www.moohouse.co.uk

2010-01-28T14:38:00.003Z

I'm sooooo tired, permanently! You know that being a mum is going to be hard, you know you won't get a proper night's sleep for weeks on end, you even kind of know you'll turn into a loon who automatically pats her husband on the back to burp him when he hugs you, but you still aren't prepared for what being a mum actually involves, at least I wasn't. I get very grumpy sometimes and my lovely husband puts up with it and even pretends that I've not been mean when actually I could reduce a hardened hitman to tears. I'm lucky to have him. Sometimes I forget how lucky I am, how lucky we both are. We have a beautiful healthy daughter and that is something many couples don't ever get to experience, even the ones who haven't had treatment for cancer. When Leyla smiles, or does a huge man-burp or when she bites my finger and I discover the tiny sharp point of her first tooth, that's when I know how lucky I really am. When she wakes me at 4am, I sometimes forget that!

Another way in which I'm very lucky is that I have a husband who is able to provide for us so well. I've just decided that I won't be going back to work in May, when my maternity allowance ends. Instead, I'm going to be a work-at-home mum and make baby things and headscarves from home. It won't make me rich but it will hopefully be some pocket money for me. I should add here that I'm very proud of Arif as he recently got promoted at work. He's worked really hard for it and deserves it completely, and what he's done recently must have been extra hard because he gets woken in the night. Clever man!

The decision not to work, at least while Leyla is little, has cheered me up so much. I feel a lot lighter now, if that makes sense, and also more free. It also means that I feel more capable of turning my thoughts to our future as a family. I know that by most people's standards, Leyla's birth was a relatively easy business but it left me feeling pretty awful. Nothing went how I wanted it to and I barely even remember holding Leyla or any of the nice stuff, I just remember lots of pain and an awful lot of screaming. Then Leyla was jaundiced and too sleepy to feed properly so I feel incredibly guilty for not breastfeeding for more than a few weeks. I know people say not to feel bad but I do, and I also miss it a lot. It's such a nice thing to be able to do and I wish I had tried harder to make it work for us. And Leyla having to go back to hospital just after we went home was pretty miserable. Because of all that, after she was born I had weird panic attacks like when I was having chemo. Yuk! Anyway, I wasn't supposed to be whining. What I wanted to say was that I now feel better about thinking about having more children later on. I wouldn't want Leyla to be an only child, I can't imagine what it would be like without my sisters.

Leyla is now sleeping so I should really go and do some housework before she wakes and wants feeding or playing with. I have a huge pile of washing to sort (it literally is about four feet high, grrr). Fun fun fun!

Rach x

Adrienne

2009-10-02T11:57:00.002+01:00

The Hodgkin's world is in mourning for Adrienne. Her family made the heartbreaking decision to take her off the ventilator yesterday. I can't imagine ever having to make that decision for anybody, let alone your child.

Adrienne fought long and hard and gave the Hodge everything she had and more, supported by her loving family and friends. Both Adrienne and her family, especially her mum Alison, are and always will be a huge inspiration to people all over the world.

There isn't anything to say to make this better. It isn't fair. The only thing to do is to give your loved ones an extra hug and be grateful for every day that we have.

Rach x

2009-09-29T14:12:00.001+01:00

I am soooooooo tired. Babies are hard work.

I'm not getting dressed today. And maybe not tomorrow.

R x

2009-09-27T16:56:00.007+01:00

Leyla Rose Khan arrived on the 12th September and weighed an impressive 9lb 1oz.

She has a lot of hair, which has not turned out ginger unfortunately, but she does have very pretty dark blue eyes for now. Apparently she has my chin (or chinS as my lovely husband pointed out!) and she has Arif's mouth. She's very cute and quite a good baby so far.

This is when she was fairly freshly squeezed:

We also think she looks very like my sister Nikki did as a baby. Not sure if that's a good thing or not... sorry Nik!

This is baby Nik and me:

The first few days were a bit stressful with the little madam not wanting to feed enough and ending up dehydrated and a bit jaundiced so we ended up back in hospital but that soon sorted itself out and she doesn't stop eating now. We also have a weird blood thing going on because my blood group is O+ and she's A, which means that my antibodies have started to break down her blood or something. It's called ABO incompatability. It will resolve itself in a month or so, but she'll be having a few blood tests just to keep an eye on her and we're giving her extra folic acid. She's just about to start screaming like a dinosaur for food so I'd better go!

Rach x

Full Moon?

2009-09-02T14:19:00.002+01:00

Baby is due tomorrow! I'm not really feeling any different though. I keep getting Braxton Hicks but they're not painful so they don't really mean anything. I have read that more women go into labour when there's a full moon... and Friday is the full moon so maybe she'll decide to make an appearance then. I'm not sure if there's any truth in the full moon stuff but if the moon can affect the sea, maybe it does affect the water in your body and the baby is surrounded by amniotic fluid so who knows? Fingers crossed! I have a GP appointment on Friday too.

I'm soooo tired! Time for a nap I think.

Rach x

Prayers/good vibes/love for Adrienne

2009-08-30T13:16:00.002+01:00

Just a quick request. I don't know if anybody still reads this blog but if you're out there, please pray for or send good vibes or love or whatever it is you do for Adrienne. She's not doing very well. See her blog here - http://adrienne95070.blogspot.com/

Adrienne has fought Hodgkin's for a long time now. She (and her family) are an inspiration to everyone out there who is fighting or who has fought this horrible disease. It's not fair that somebody should fight it for so much of their life and then have to go through what is happening now. So please, prayers/vibes/love to Adrienne.

Rach x

2009-08-28T23:16:00.002+01:00

It's getting scary now; baby is due in less than a week, although something like 80% of babies are overdue so I'll not hold my breath. I think I've got everything ready - baby clothes are all washed and ironed (let's face it, that's the only time they're EVER going to meet the iron!), the cot and moses basket are in place, the pram is ready and waiting in the hallway. I've got loads of nappies (woo!) and baby toiletries and the baby's room is pretty and tidy. Shame the rest of the flat isn't tidy but I've read that newborns can't focus on things more than 20cm away so she won't care.

I feel huge though I don't seem to have got much bigger in the last week or two, which is nice. I can't turn myself over in bed without holding onto the headboard though! And I've given up trying to wash my feet. I normally just soak them clean in a nice warm bath, but tonight Arif actually washed them for me, which was sweet of him.

It's Ramadan so Arif is fasting at the moment, which means he gets up at 4am to eat before the fast starts at about 4.30am. Poor man then tries to get back to sleep, only to wake up again at 7.30am to go to work on the hot and sweaty tube. And there's no drinking allowed either, not even water. And it's summer so the days are long. He is allowed to eat at about 8pm. I don't know how people manage it. I'm obviously not fasting because I'm pregnant but I admit that I'm really glad I'm not. I do get up to make him breakfast at 4am... trying to be a good wifey! I try not to eat and drink too much in front of him, but I still feel a bit guilty. And as well as the lack of food, there's also a lot of tiredness to contend with. Getting up at 4am ruins a good night's sleep!

I'm not sure how things will go when the baby arrives. Ramadan lasts a month, so Arif will be fasting until about the 20th September. Hopefully I'll be okay at looking after the baby overnight so Arif can get enough sleep. I'm sure that fasting plus a newborn is not a good recipe for well rested parents!!!

Arif is asleep now. He fell asleep while I was watching The Tudors (for the historical stuff, obviously. I close my eyes at all the crude bits) but I'm achey and not tired enough to sleep yet. Maybe a warm bath will help. Good idea me. I'm off for a bath!

Night,

Rach x

Pretty things

2009-08-03T09:13:00.013+01:00

I'm now 35 weeks and 4 days pregnant. Scarily, she's due in a month... it's come around so quickly. I'm sure these last weeks will drag though. Baby constantly has a foot in my ribs and her bottom sticking painfully out of my right side, though she does move to a more comfortable position (for me) when Arif asks her too. I think she's going to be a proper little daddy's girl. If I ask her to move, I just get kicked or ignored!

I've been meaning to post some pictures for ages. The first thing is the pram mum bought us. It's one that converts into a pushchair for when she's older and it folds up small enough for our flat. And my lovely sisters bought me (I mean, us) a beautiful changing bag, one that I couldn't justify buying myself.

Here goes:

If I've spoken to you recently, you might have picked up on the fact that I've become quite obsessed by nappies. Not nasty disposable ones, but proper cloth ones. The years of boiling terry squares for hours and stabbing your baby with nappy pins are long gone... now it's all about beautiful fitted nappies and easy washing. And it's far better for the environment, and better for baby's bottom. So I've got some disposables to start off with but I hope to use cloth nappies as soon as I can. I initially bought some very sensible Smart Nappies from Mothercare, but they're plain white and there's probably just enough to last for two days. So I really needed more because I plan to wash every other day but they'll take a while to dry and I thought that I may as well try some different makes too, to see what works best.

Here's my stash so far:

These are the actual nappies... four I got from a lady who makes them on a forum I visit (top left), a MotherEase one size (fits from birth to potty!), a Bambinex Teddy (pale pink at bottom left), a microfibre Little Lamb, a Nature Babies Diddy Diaper and a bamboo Little Lamb.

The four at the top left have a fleece outer layer so should be pretty waterproof unless baby is sitting on her bottom for ages. The rest will need a wrap, so I've got these:

My favourites are at the top left - they're Tiny Eco pink fleece with roses and were very cheap. The plain pink one is a Baby Beehinds one from ebay, the white ones are Little Lambs, the blue gingham is a Nature Babies and the one with pictures is a MotherEase Air Flow with ocean creatures!

I've also got some muslin squares and some prefolds, which you use like terry nappies. The muslins are apparently great for newborn poo (nice). You use a nappy nippa, which kind of grips the fabric from the outside, instead of pins and the same with the prefolds. It's sort of like origami. Then you put a wrap over the top. These are my muslins, prefolds and nappy nippa:

And last but not least, I have some more on the way. One bright red Itti Bitti D'lish, which doesn't need a wrap and has snap in extra bits for big wees, 2 Wonderoos birth to potty pockets, 2 Fuzzi Buns birth to potty pockets and 2 medium sized Fuzzi Buns. They were a great deal!!! Pockets are kind of cool cos you don't need a waterproof wrap and there's a sort of pocket in the back where you put as much or as little extra fabric for your baby's needs. Can't wait to get them!

Yes, I love nappies. But they're practical and cheap and pretty and I'll be saving the world one nappy at a time. That's how I justify it anyway.

Argh, got to go to work.

Rach x

2009-05-26T23:37:00.002+01:00

If you know me fairly well, you'll probably know that I'm a member of an internet forum for those affected by Hodgkin's Lymphoma. It's a place where those who have the Hodge and their familes and friends can talk about the millions of things that the horrible disease affects, as well as a place to share triumphs and stories of Life After Hodge. I'm also a member of a pregnancy forum, where mostly women get together to ask "am I normal?", to gripe about the indignities of pregnancy and to delight in each others' stories of scans and births and bargains in baby shops.

It struck me today how those two forums often seem like complete opposites. One deals with sickness and the other with new life.

Today the world lost a lovely man named James. He was a husband and father and was only young. On the 30th April, the world lost a beautiful lady called Jessica. She was a wife and a mother and she too was only young.

I read the sad news about James at about 10.30pm. I sat here at the dining table and cried for him, but mostly I cried for his wife and his son and everybody else that knew him. I cried because there is now a huge hole in their lives.

And then, half an hour after reading about James, I appalled myself by turning back to my laptop and clicking on the link to the pregnancy forum. I read about bras and peanut butter and babies in tummies kicking dogs.

Am I awful for going so quickly from one forum to the other, from such saddness to triviality? I've been thinking about it since I did it. At first I thought I must be really heartless, but then I realised that both of those forums are really about the same thing.

The Hodge forum takes as its subject a disease, cancer, and there are some very sad things that are written about on it. But there are also some very happy times too. There are photos of people's post-Hodge babies and graduations and stories of long term survival against the scariest odds.

The pregnancy forum starts off in a place of happiness, of new life, but it is also a place of fear at times. Of bleeding and complications and those terrible stories of babies who are just not meant to be.

Both of the forums are about life. And death. And both are happy and sad, and both are frightening and hope inspiring.

What am I trying to say? I have no idea. It's quite late now and I'm just writing how I feel at the moment. I feel sad because people, good people, die and leave others behind. I feel happy because there is a baby inside me, kicking me every few minutes to remind me that she's in there. I'm feeling how connected everything is, how life and death are inseparable. I'm hoping that our baby will be okay and I'm hoping that James' family will get through the horrible times ahead.

Rach

2009-05-08T12:09:00.003+01:00

More clothes... courtesy of Marks and Spencer and some vouchers from Sky!

Cute!

Rach x

Oops

2009-04-24T15:30:00.009+01:00

I tried to be such a good wife. We needed milk so I thought I'd just nip to Tesco to get some and get a chicken for hubby while I was there as a Friday treat (!). Well I managed that, but I also managed to get lured into the baby clothes section. Oops.

This is what I got... how could I resist?

Very sweet pink dungarees with flowery embroidery and a flowery sun hat:

A hoody and a fleece:

Adorable little romper suits:

I tried to put them back but they just wouldn't go. I HAD to get them. No more now!

Rach x

Baby buys

2009-04-23T09:59:00.008+01:00

You may have been shocked to see the time of my previous post (the one from today) because it’s quite early. Well NEWS FOR YOU… I’ve been up since half seven. And I did the same yesterday. Think I’m coming down with something, maybe a small bout of insanity.

Yesterday when I woke up, I did the normal breakfasty things, listened to some radio, read some forums and then decided to go shopping. It was the first day after finding out we’re having a baby girl so there was some serious shopping to be done! I got some very cute things, and (thanks to some gift vouchers I had lurking in my handbag) managed to spend very little which is always nice.

This morning, I had a sudden urge to write on my blog and post some photos. So (and I know this is sad, you don’t need to tell me) I decided to write a list of all the things I’ve bought for the baby and post pictures on my blog. I posted the scan pics from Tuesday first though. Now here’s the fun stuff!

I’ve decided to give washable nappies a go so I’ve bought one set of Mothercare Smart Nappies so far. I’ve also turned into a freebie collector so I have some free samples of disposables and eco disposables. I thought I’d get a start on cotton wool and things too; buying a little each week is easier and helps spread the cost a lot.

I’ve bought three hooded towels with matching wash mits, and two blankets (one made of waffle!) so far.

Basics are always good (and cheap) so I’ve bought a pack of cute white short sleeved body suits and a pack of three sleep suits (two yellow, one white).

When we told mum and my sisters we’re having a baby, she bought the cutest little set of things from Next – three adorable short sleeved body suits with teddy bear patterns, two matching hats, three pairs of socks and a set of five bibs, plus a snuggly Winnie-the-Pooh sleep suit with matching bib.

I found this in Primark – it’s a 2.5 Tog baby sleeping bag. I’m finding it hard to figure out what sizes to buy for what seasons – baby will be born in early September so she might get a month or two of summer but then it’ll be winter. This sleeping bag is pretty much as thick as they come but it’s 0-6 months so should be okay in the winter. I’ll hopefully get some lighter Tog ones for the early days.

How cute are these? They’re sleep suits with matching hats from Asda. The black and white one has a panda on it and says ‘I’m just so cute’ and the beige one has a tail on the back and says ‘I love milk’. I love them!

These are things I got yesterday on my girly shopping trip! The jeans are so tiny and have pink buttons on the front and blue swirls on the back. The body suits all have a different motif on them – butterflies, elephants, flowers – all in cute girly colours.

This little outfit was on sale in Boots. I love red and blue on little girls and I love polka dots too, so it’s perfect. It’s a bit bigger than the other clothes so should be just about right when it starts to get a bit colder.

This is my favourite buy. If they made it in big, I’d wear it!

That’s all for now. I plan to buy more!!! The basic stuff I got early on all came from supermarkets and cheap shops like Matalan and Primark… I haven’t hit there since finding out she’s a girl so that’s my next job.

Oh, here’s a pic of baby’s ‘bedroom’. We live in a one-bedroom flat so she doesn’t get her own real room but our bedroom is huge and we have very sturdy wardrobes so we’ve partitioned off a bit for her. It’s just the right size for a cot, a chest of drawers and a blanket box. It also has some of the bookcases from our room, which are empty of books so I’ve bought some clever boxes for storing things like nappies and bathtime stuff. I’ve painted the back of the wardrobes to look like sky and made some kites out of felt to stick on the walls. The fuse box is in there so I’ve stuck a big wadded lilac gingham kite over it to hide it a bit. And I stuck up a beautiful mural/poster thing I bought with the alphabet and numbers. It just reaches right round the room like a border. It’s getting there!

Okay that’s enough lists and photos. I’m sure I’ve gone mad, at least a little. Oh well.

Rach x

20w5d Scan

2009-04-23T09:51:00.006+01:00

On Tuesday, we went for an ultrasound, called the Anomaly Scan, which is where the baby is basically checked over. Baby passed! It sounds like baby is quite like its mum - awkward! The sonographer kept having trouble looking at certain bits because the baby kept hiding behind my tummy button and getting into all sorts of weird positions. At one point, I almost thought it had one arm on the front and one on the back, but apparently baby was just waving around sideways. Looking at all the movement and weird postures, I'm amazed I can't feel wriggles yet!

Here are the pics from the scan... the sonographer spent ages trying to get some nice ones cos baby wasn't playing along!

Profile of baby's face:

Another face profile:

Amazing picture of baby's spine (no, that doesn't look comfortable!):

First attempt at picture of a foot:

Second attempt at the foot:

So there we go. If you can't tell from the pictures of the foot, SHE'S A GIRL by the way. No 'man toes' on this baby!

I’m so happy she’s a girl. I know some people won’t believe me but I would have been just as happy if she was a boy – I had no preference whatsoever. A healthy, happy baby is what’s important. But now I know she’s a girl, I can start really imagining her; it feels a lot more real now.

Arif feels all clever because he was convinced we would have a girl. I think he’s quite pleased with himself because, although his older brother already has children, he’s the first to produce a daughter. Arif has three brothers and one sister, and his older brother has three lovely sons. It’s the male who determines the sex of the baby, and although it may seem like statistically the family is ‘owed’ a girl, that’s not the way it works! Because the men in his family have boyish sperm, it was actually slightly more likely that we’d have a boy. Maybe there’s something unknown to medicine as yet… the Rodgers/Coulshed eggs actually turn away male sperm and only let the girly ones in?! Maybe I can take credit for a baby girl after all!

Rach x

Somebody stop me...

2009-03-14T11:20:00.001Z

We brought some doughnuts home last night... seven shiny beautiful doughnuts, some dripping with icing, others filled with gooey custard or jam. After my breakfast, there are three left. And Arif hasn't eaten any. Whoops.

Rach x

Cravings

2009-03-10T12:42:00.005Z

Does it count as a craving if you NEED to eat a full packet of Sainsbury's tiffins, followed by a big bag of jelly beans? Or is that just greedy? I choose to believe that the baby needs some vital nutrient contained in what are, after all, such highly nutritious food stuffs. And I think the baby also NEEDS some crisps. It's a hungry baby!

Rach x

2009-03-06T10:45:00.007Z

You know you'll remember some days forever. 5th March 2007 - I found a strange lump on my collar bone. 8th February 2008 - Arif first got in touch with me. 17th October 2008 - we got married.

And now, some new dates to add to that list. 2nd January 2009 - found out I'm pregnant! 3rd September 2009 - Baby Khan is due!

I'm now 14 weeks pregnant and we're telling everybody. We didn't want to spill the beans too early because it felt like tempting fate. I hate the phrase 'miracle baby' and I won't be using it ever again, but this does really feel like a little miracle. Arif and I have both had chemo and, although our doctors were pretty sure it wouldn't affect our fertility, I still didn't think we'd be able to have children. To find out that I'm pregnant is amazing.

It's been more than 18 months since I got the all clear and over a year for Arif. When we got engaged, Dr B met us both and told us that as far as he's concerned, everything was fine for us to have children. We asked how long he would advise couples to wait after chemo, in terms of treatment effects and in terms of risk of relapse. He didn't really want to say! He said that the standard line is that two years is a good length of time, but then he emphasised that he's had patients have children only a year after and he's fine with that. So I took that as him giving us the go-ahead!

I had my first ultrasound on the 25th February. Everything seems to be in the right place and the right size. Oh and I think the baby is a unicorn. Cool.

Some pics:

The one at the top right is a close up of the baby's head... CLEARLY showing a unicorn horn!

I think (hope) it should be a fairly normal pregnancy. I've had horrible all-day morning sickness but thankfully no actual throwing up and it seems to be getting better now. For those of you familiar with the side effects of ABVD chemo, well pregnancy is actually remarkably similar (unfortunately!). Now I'm in the second trimester, things are supposed to start getting better for a while. I want to glow!!! Probably the worst thing so far is that I'm extra sensitive to smell and things that I know in my head smell fine, smell horrible to me at the moment. Walking round the supermarket is a nightmare - every old lady in London seems to have put on half a bottle of stinky perfume and I'm sure they follow me around. It makes me gag.

Anyway, even if I feel sick for the rest of the pregnancy, it's still great. And now I can start buying cutesy baby stuff!

Rach x

What a difference a year makes...

2009-01-28T11:38:00.002Z

At this time last year I had been all clear of cancer for about 6 months. I was back at work and my hair was just about getting to a length where I was happy enough to show it to friends and family. Chemo was beginning to feel well and truly in the past and the short term side effects were long gone.

I was pretty miserable though. The novelty of being back at work had worn off and I was beginning to realise how horrible it is to work in a place where you feel ignored and overlooked and where you are made to feel guilty for feeling sad about that. I was told in my annual review that I had failed to meet the changing needs of the business and needed to make some big changes to the way I was at work. Well, it's long enough since I last worked there that I feel completely comfortable now in saying BOLLOCKS, YOU ARSEHOLES! Borders UK, as my employer, you had a legal duty to look after me when I returned to work. As you are well aware, having had cancer means a person is covered by the Disability Discrimination Act and you completely ignored that. You did nothing to help me when I came back to work and changed things, like my hours and duties, which made it harder for me. And when I raised issues, you promised big things and always failed to deliver. And not just for me either. You suck, really you do. Yep, I am still bitter.

I intended this to be all positive, whoops. So, back to the good stuff. Just about a year ago, I was miserable. Work was rubbish. A relationship I thought I had been in for the last few years turned out to be nothing but a sham.

I wasn't to know it but in a few weeks' time, things were about to start getting better. On the 8th February, I received a message on the Hodge forum from the future Mr Rachel. He was called Arif back then. We got chatting... you're probably aware of the story. He encouraged to me to apply for a new job, which I got and which turned out to be the best job in the whole world.

Fast forward a year and I've been married for three months. And I'm really happy.

So, as I've copied the title from Mr Rachel's blog, I'll also copy his advice-giving at the end. If you've tried to get things back to normal after treatment, bear in mind two things:

1. It should get easier with time. If it doesn't, you should think about changing some things.
Most people just want things to go back to exactly as they were before, but sometimes it's better to move onwards and upwards. Open your mind to new situations and possibilities. Make some silver linings to your experience.

2. Some people will stick by you through treatment and beyond, others will drift away when trouble strikes. Others will emerge to support you when the going gets tough. Forget the ones who are useless and cherish the ones who stay with you, whether they're new or old. They're the people you want around you when you're celebrating the great things too.

Blergh, I've gone weird and soppy. I'm going to slap myself now.

Byeee,

Rach x

2008-11-24T16:23:00.003Z

Married life has been busy! I'm just starting to settle into my new home and get used to being away from my family. Maybe I'll write more about the wedding and afterwards another time, but for now...

On the Hodgkin's forum, Bekah started a Gratitudes thread (seeing as Thanksgiving is coming up in the US) so I just wanted to share what I am thankful for. The list could be much much longer, but these are the things that are at the top of my list right now.

I am thankful for:

- My husband, who has made this year so much easier and happier than last year
- My mum and sisters who I miss horribly but who are making sure to keep in touch now I'm living away from home
- My favourite girl, my dog Carnie, who always gives me a hug at just the right time
- Everybody who came to our wedding and made it such a special day, especially Veronica, Wullie and their gorgeous girls who travelled all the way from Scotland
- My father-in-law who fixed the shower for us!
- All the doctors, nurses and receptionists at Royal Preston Hospital who looked after me and kept me cheerful on chemo days
- Silver linings... without the Hodge, I would never have met my husband.

Rach x

2008-10-13T13:16:00.002+01:00

I'm not sure where my brain is today. It's not where it's supposed to be anyway!

I get married on Friday. I can't believe it's come round so fast. And I feel like I have loads left to sort out. I need to buy 15 bottles of Sprite for a start! And double-confirm all the arrangements. And pack for the honeymoon. Dollars, insurance, flight details, sort the cake, sew some beads on my dress, get my nails done, get a lovely sister to cut my hair, sell my car... there's loads more. ARGH!

I'm nervous and scared and excited. I feel like I'm planning a children's party x a million! Normally, I look forward to it for ages beforehand, but in the last few days I'm wondering why I'm doing it all... why didn't we run away and get married on a beach? It would have been sooooo much easier! That said, I am looking forward to it and I've made lots of lists, which has helped ease my mind a bit. My sisters and my mum are all going to be given a list of responsibilities today (they don't know it yet) so that I have nothing to do/remember on Friday. It won't stop me worrying and I'm sure I'll nag and double check everything they do (sorry ladies) but it won't just be me trying to remember everything at least.

I tried on my full outfit yesterday. I'd tried on each individual bit but never done the whole lot together before. Mum got all shiny eyed so I think that's a good sign that it looks ok. Ahh who am I kidding? I think it's perfect! We're having quite a small scale, informal wedding (so no poofy wedding-cake dress) BUT I would have chosen the same outfit even if we were having a HUGE wedding. It's just right, thank God. I was worried when I tried on the veil and it didn't look right, but then I made a bigger tiara than I was going to wear and now it's just what I wanted. I love crystal beads!

Right, I'm sure I have something important to be doing right now. Oh yeah, I need to buy helium. And go and complain at the bank for charging me an arrangement fee for an overdraft I've had for the past 3 years! Naughty HSBC, I'm soooo moving to the Co-op bank as soon as I can.

Rach x

2008-09-23T17:04:00.002+01:00

Again, it's been ages since my last post. I feel like I've been really busy but that's probably just me being lazy.

I saw Dr B (he actually graced us with his presence!) a while ago. It was an appointment to talk about fertility. Basically, he said that my fertility should be back to normal now (and from what I can tell, everything is the same as it always was before). I asked how long they would normally say to wait before trying for kids and he said the textbook answer is two years. That's enough time to be reasonably sure that the Hodge won't be coming back (though of course relapses can occur at any time, even many many years later), but Dr B did say that he knows of patients who try for kids straight away, especially if they're in their late thirties. ABVD can make the menopause happen a few years earlier, so I suppose if you're nearing that age anyway, you'd want to try asap. But thankfully that isn't a concern for me, seeing as I'm only just coming up to 24.

Basically, I think Dr B just wanted to reassure me that everything should be fine with me now and to tell me to use contraception unless we're trying to have babies, which is nice to hear. That kind of talk is only for after we're married though, so don't worry mother, you're not gonna be a granny any time soon!

Rach x

2008-08-09T11:33:00.003+01:00

It's been ages since my last post. Things have been busy!

I suppose the first thing to mention is that I had my check up on the 4th August. I saw the lady doctor and one of the nurses I hadn't seen since the start of my treatment and we spent most of the time talking about getting married. The actual doctor stuff took literally two minutes...

"How do you feel?"
"Okay but tired."
"Tiredness can last up to two years after chemo so that's normal. Any other problems?"
"No."
"Great, let's have a quick feel of your neck... That's fine. So tell me about your wedding......"

Apparently, I can transfer my follow up care to London if I want but I don't have to. That was one thing I was worried about. I've had everything in the same place with the same people and I really didn't want to have to move to another hospital but apparently they have people come over from abroad for follow ups so it's not a problem for me to stay. And I'm now only going back every 4 months so it's easy enough. We talked weddings for a while, then the doctor mentioned that I should ask Dr B about contraception/having babies and that was pretty much it.

Yesterday though, I got an appointment card through to see Dr B on the 27th August, which freaked me out a bit, but I think it's probably either that they forgot to get me to have a blood test (in which case I'll just get them to post the form out) or that they want to talk about the baby stuff. I'll ring and ask on Monday. It's a bit cruel of them just to post me an appointment with no explanation!

Apart from medical stuff, I've been quite busy at work. There was a big manga event this week which went really well and I've been sorting out future events too. What's sad is that I'm now planning events for after I've left so I'm making sure to write everything down properly for whoever takes over. We've booked the civil ceremony for Friday 17th October so I've just handed in my notice - I'm leaving on the 20th September. Hopefully that day should be good cos it's the release date for a long awaited book - Brisingr by Christopher Paolini - so I intend to go out with a bang and do a great launch party.

On Monday this week, Arif and I went to Dave and Shaper's civil wedding and reception. They're Muslims and did the Islamic wedding stuff ages ago but they've just made it all legal. It was lovely and gave us loads of ideas. In fact, they got married in the register office where we're getting married and we LOVED where they had the reception so I think we're just gonna copy the whole lot. We actually spoke to the restaurant as we were leaving the reception and it all sounds perfect. I'm just waiting for Arif to arrive now so maybe we'll try and sort it all out today or tomorrow before he goes back home.

Right, must go and do something like laze around doing nothing

Rach x

Happy News

2008-07-13T21:59:00.003+01:00

This one is for Veronica. Okay so maybe I'd already written it and just forgotten to publish it but still!

Here goes...

I'm engaged! It may come as a surprise to you but it's true, Rachel is engaged. To a real man and everything.

In case you don't know, his name is Arif and he's from London. He's lovely lovely lovely. We actually met through the Hodge forum, so yes, it's a sad internet thing! Such geeks.

Arif had Hodgkin's too and had similar treatment to me, though we didn't know each other while we were going through it all. We started talking once it was over and we were both trying to get back to normal. He really helped me sort things out in my head. The best thing about it all is that if I hadn't had the Hodge, I never would have met him so it makes it all seem worthwhile. I'm really happy, happier than I've been for years. Oh, and I have a lovely diamond on my finger which helps a bit with that!

The only bad thing is that Arif lives in London where he has a great job and I live in Preston where I have a job that I love but which pays peanuts. I don't even really like peanuts. Sooo there isn't really a decision to be made about which one of us moves; I'm moving to London. I hate having to leave my job, especially as I would soon have been given the children's section to look after, which is what I have been working towards for years. We don't want to wait to get married though so I'll soon be leaving my perfect job. It's for the best reason though and I have been told that if I want to transfer to a London branch, it shouldn't be a problem, which is nice to hear.

Anyway, we got officially engaged on the 5th July so I've had a fiancé for over a week now. It feels good (and grown up!).

Rach x

Normal

2008-06-28T17:37:00.002+01:00

Normal? NORMAL? What on earth? Why not beautiful? Or sexy? Or just downright lovely?

My oncologist says I'm NORMAL. Huh.

Well, I guess that's good news actually. My 'CT scan performed on 11.06.08 was normal'. Huff.

Shouldn't complain.

Rach x

Scanxiety

2008-06-17T10:04:00.001+01:00

Firstly, no results from my CT yet. No big deal.

I don't normally suffer from scanxiety but yesterday I had a horrible taste of what it's like. I don't worry about my own scans because I know I've been feeling okay and I just don't really think about it - it's just a normal appointment for me. In fact, I normally worry more when I go to see my GP than when I see Dr B. But yesterday, Arif went to see his onc to get the results of his recent CT. It's so much harder when it's somebody else!

I knew, rationally, that he was probably fine - he hadn't been feeling unwell and had no symptoms or anything, and for the few days beforehand I was fine about it. But when I knew he was on his way to his appointment, I was so scared. When it's somebody else, I think it's natural to feel that they'll be fine - I certainly feel that if one of us was going to relapse, it would be me, and that's the way I prefer it - but just for that half an hour beforehand, I was petrified. And of course I couldn't really say anything about it because admitting that might seem like I thought the results were going to be bad, which I didn't but I was just so scared in case they were. I'm getting myself a bit confused now!

Anyway, of course Arif's results were fine, as I knew they would be. But I did get a taste of how all the families and friends of those of us who have or had the Hodge feel around scan time. It's not pleasant!

Rach x

2008-06-13T22:13:00.003+01:00

I had my CT on Wednesday as planned. Now that was a seriously long day (by my standards anyway!). At work for 08.30, finish at 17.00, nip home to change into big knickers (gotta be careful when you're wearing a hospital gown and climbing up onto beds!), quick bite to eat and off to the hospital for the scan, then back to work by 19.10 for an event with an author, home by about 21.15. I was sooo tired that night.

The scan went as usual - easy enough. The lady who set up the cannula and injected me with the contrast stuff was really nice and chatty, so I asked her why some people have to drink gross stuff before an abdominal scan but I don't. When Grandma was having scans of her abdomen a few years ago, she had to drink it but I don't - am I special? No, it turns out that I'm not special.

Apparently, they used to make people drink it cos it's a contrast thing that shows up what's inside you, BUT some people were having chemo and couldn't stomach it so the doctors just used to say drink plain water instead, and they found that they could still see stuff just as well. And others were nil by mouth so they couldn't even drink water and they found that drinking nothing didn't really make a difference either, so the department made the decision that it wasn't worth making anybody drink anything unless specifically requested by the doctors. Fine by me, thanks!

I won't get official results (unless there's something wrong and I'm called in sooner) until my onc appointment on the 28th July but I'll see if I can get some unofficial ones at the beginning of next week. Fingers crossed for me please!

Rach x

CT Scan

2008-06-09T19:45:00.003+01:00

Just a quickie to say that I have a CT scan booked for 6.30pm (after work) on Wednesday. Thankfully, where I have the scan they don't make you drink anything yukky. I have no idea why some people have to drink contrast stuff and I don't even though I'm getting my abdomen scanned as well as my neck and chest but I don't really care! Official results will be on the 28th July when I have my onc appointment but I should hear something unofficial as soon as it has been reported by radiology.

Rach x

This cancer card lasts forever, damnit

2008-05-20T22:15:00.003+01:00

This is a rant so you should probably stop reading now!

As the title says, this cancer card lasts forever. Yeah so mostly I may say that I'm over the whole cancer thing and I may be 'better' and I don't really get worried about stuff like scans, blood tests etc, but this cancer thing is for life and I've never denied that. There has to be a silver lining somewhere and mine is the CANCER CARD, damn you, and you're NOT taking that away from me.

What do you think when you get a cough? Do you worry that the tumour in your chest is back and making you cough again, or do you think ooh time to get out the cough medicine to ease my poor poor tickly throat? When you get a cold, do you worry that there's something dodgy going on in your immune system again, making you unable to fight off simple bugs, or do you think ahhh time for some Kleenex Ultrabalm and a fluffy blanket and a day in bed? If you feel tired and achey, do you wonder if it's a symptom of something sinister or do you think you must've had a busy week at work? Can you guess which ones I think, which ones I'm SUPPOSED to think? For the rest of my life I'll be on high alert for symptoms and clues. You don't know how easy you have it. So, I have a cancer card, it's still valid and it's valid for the rest of my life. You're not taking that away!

Rant over.

A gentle reminder of something I said ages ago, this is my personal journal. If you don't like what you read, tough. And don't discuss it with me, I don't want to know what you think unless you want to heap praise or support on me. Thanks.

Rach x

2008-05-16T21:47:00.002+01:00

Just a quickie... when I was off sick and when I went back to work and found things really difficult, there were a few people who really made an effort to keep in touch and looked after me. One of those people was Dave G. Dave's a great guy and today I heard some great news - he got a fantastic new job. Well done Dave!

I hope he doesn't mind me saying here but Dave had cancer too but a lot more seriously than I did. He's living proof that sometimes bad things happen but good things DO happen to good people and I think we all get what we deserve in the end. GO DAVE!

Rach x

A very long one - have a wee first.

2008-05-13T21:31:00.011+01:00

I've blogged a bit recently about how much things have changed over the last year and how I've changed as a result. I'm in a very different place to where I was this time last year or eighteen months ago, or even six months ago. Some of the changes are obvious. Eighteen months ago, cancer was a word that related to other people. Twelve months ago, cancer was happening to me and I was having chemo. Six months ago, cancer was in the past but it was still having a big effect on my life and I was struggling to get back to normal. I suppose those changes are pretty obvious to the outside world. I was healthy, I was sick, I was getting better. What you can't see are the changes that those very physical things make to your emotional, mental or spiritual states.

Before cancer, I described myself as an atheist. I decided that when I started high school. I didn't agree with what I'd seen/read/been told about religion and I loved to criticise religion in my RE lessons. I did my GCSEs (including Religious Education and Religious Studies. RE was the one everybody does; RS was the one where you study two religions in more depth, in my case, Christianity and Islam.) At college, one of my A-levels was in Religious Studies. At uni, I studied Philosophy and a little Islamic Studies. BUT, since I was 11 and I made the decision that I didn't believe in God, I didn't question my own beliefs again. I loved to question other people's beliefs and evaluate them, but I never related that to myself or reconsidered what I believed.

During cancer, I was okay. I was a little lonely at times; at other times I was cranky and tired and hurting, but I was mostly okay. I didn't really ask the question that a lot of people ask. "Why me?" didn't really cross my mind. I didn't question the big picture or even if there is a big picture.

After cancer, well that was the most difficult part. Honestly, I was lost. I hated my daily life and I found it very difficult to get back into things. I was more miserable than I had been at my very worst point during chemo. At least when you're sick, you're sick. You can take some medicine, you can sleep, you can moan and cry. When you're better, you're supposed to be better. I wasn't, I was worse and that didn't make sense to me or anybody else. I started to question why things were so hard. I was so low and I couldn't really see a way that things could be better.

I started to question things. I found myself talking things through with a strange someone. This strange someone was not a 'real person'. Was I talking to myself? I didn't pay much attention to it, but I talked more and more to this person. I just passed it off as something I had always done, but I was doing it more often every day.

Things kept getting harder. I posted a message on the Hodgkin's Lymphoma forum that I visit about one problem I was having and received a lot of support. One person emailed me to help and we started talking a lot. We found that we both had very similar experiences and we were both interested in the same kind of things. One thing that really interested me about him was that he is a Muslim. I hadn't really thought about religion for quite a long time but we started talking about our own beliefs and questioning each others' ideas. I replied with my usual atheist responses - the problem of evil and suffering, the psychological need to believe in God, the way that 'proof' doesn't appear to be available to everybody. It was text book. For every argument he had for the existence of God or for every answer he gave, I had another critisism or another point to raise. My RS teachers would have been proud.

I soon realised though (without giving myself away, I hope) that I was just spouting what I had taught myself to say. There was no conviction behind what I was saying. I was just giving an alternative view point to his. Did I really believe what I was saying? Had I really thought about it? I believed what I was saying when I was 11. That's a long time ago.

So, I started reevaluating my beliefs and I found that what Arif had been saying all along was pretty much spot on. I asked lots of questions, I got lots of answers. I wanted to make a rational and informed decision. Google got hit pretty hard with my questions. I had a lot to think about.

What is just as important to me now though, and I didn't realise this before, is how something makes me feel. It's not all about science and rationality. When I was really miserable when I was a teenager, I used to cry and find myself repeating "I want to go home" even when I was at home in my own bed. I never understood that. Now I think I do. I was never happy in my own skin. I think I've found what will make me feel at home - Islam.

So, this whole very long, rambling, waste of space blog has all been to get to that point. I'm converting to Islam.

I've told some people already and with the exception of one person (who won't ever read my blog, so don't worry, it wasn't you), the response has been overwhelmingly supportive. Not everybody understands it and I'm sure some people think I'm crazy but everybody has realised that I'm happy and doing what is right for me and I think that's enough for them. If you, on the other hand, have something nasty to say, please email it to straight_in_the_bin(at)moohouse.co.uk. Thanks!

This may seem strange and sudden to you but I firmly believe that this has been a long journey for me, that started when I was young. I've always had a keen interest in Islam and events of the last year have led me to where I am now and opened my mind. Soooo, if you see me in a headscarf, NO THE CANCER ISN'T BACK. I'm just being good and modest.

Well, I can try.

Rach x

2008-05-04T19:47:00.002+01:00

I'm so tired! Working full time with no set routine is draining. I've worked full time before and not had a problem with the hours, but having different days off each week and rarely having two days together is so tiring. Oh well, I'm sure I'll get used to it. Apart from that, I'm still enjoying work. I do miss working with my friends from that other bookstore whose name I won't mention, though it's nice that quite a few people have dropped by to see me at work.

I had a doctor's appointment on Monday. I saw Dr S who works with Dr B. She's very nice and very easy to talk to. I don't think I mentioned that I went to Arif's last appointment with him (poor boy usually goes on his own) but I did, so he came with me and mum for mine. It was all very short and sweet. Quick check how I'm feeling, quick poke of my neck and under my arms and that was pretty much it. Oh, my blood work and xray from last time were fine, but I knew that anyway cos they didn't contact me about them. I got the forms for another xray and blood tests but I wanted to spend the day doing fun stuff so I'm not going for them until my next day off, which is Tuesday. I'll be having a CT scan in June I think Dr S said. That will be interesting. I like the people who do the CT scans - they're always really nice. So are the xray people actually.

I don't really have much to say actually. I feel like I've been really busy but everything has sort of blurred into one big thing in my mind so it's hard to separate everything out. I went to the Lake District for the weekend (think it was last weekend, maybe the one before), which was nice. I've done a couple of events at work. I've had a horrible evil cold this last week and have been snotting all over everything but I think that's clearing up now. A Northern poet and author who came for an event at work liked the Chorley cakes I got him. That's about all I can remember.

Rach x

2008-04-05T12:31:00.005+01:00

I have been told that it's about time I posted on here again, so here you go Arif, a post just for you! Now, don't you feel special?

It's a few weeks since I last wrote but the time has flown by. I did my first ever seven day stretch of working full time with no days off - I feel very grown up now. I'm still loving my job. The only real difficulty I'm having is with getting confused about us/them and you/we when I'm talking about where I used to work! Oh, and I miss my reading groups.

On Tuesday, it was my sister Nikki's 21st birthday so we went down to London to see Joseph and the Amazing Technicolour Dreamcoat. It was fantastic! When I was little, Grandma Shirley took me to see Joseph, then she took Nik and me together, then she took all four of us. Mum had never seen it though! So we decided that it would be nice to all go together for Nik's birthday. It was mostly about Nik having a good 21st but, for me at least, it was also about remembering Grandma.

The Joseph trip was all planned months ago, but conveniently, Arif lives in London so I got to see him too. All five of us stayed overnight after the show, so Arif met us outside the theatre and we went for some dinner. It was nice to see how Arif fit in so well with my family. When all five girlies are together, we can be intimidating to say the least, but he took it in his stride. Then afterwards, the others went back to the hotel and I stayed out for a while with Arif. We went for a walk along the river, which was really pretty (VERY cold but somebody sweet remembered to bring a jacket for me) and Arif got a parking ticket. Oops.

The next day, the others had a lie in while I got up and met Arif. We spent the whole day together and it was great to see him in his own environment. At about 11am, we went on the London Eye - Arif is such a tourist, even though he lives in London, and took loads of photos! The family went on it about an hour later, then they went shopping for a bit and then drove home. I stayed though, and caught the train home that night.

After the London Eye, we had some brunch and then went on a river cruise. Again, it was very cold but it was great fun. Then it was more or less lunch time so we went to Arif's worworkplace and had lunch in the canteen there. Very swish! We actually stayed there for ages, just chatting about stuff.

In the evening, we went to visit Waterstone's!!! The store there is amazing - they have about a million different floors with abslutely HUGE sections and many many more books than I've ever worked with in each section, let alone the whole store. SOMEBODY was being sneaky and taking photos without me realising, but he did get a good one of me browsing in the Islam section. For me, that's just something I'd always do, but Arif seems to find it hugely significant. Wonder why?! We should probably go back there in a year's time and redo the photo and spot any changes!

I caught the train home at quarter to nine and got home at about midnight. Emma and Nik very kindly collected me from the railway station. It was a lovely two days - the only bad bit was coming home (no offence, family!).

Today is my day off so I've had a lazy start to the day, just staying in bed and making a phone call or two. Later, I think I'm going to the cinema with Mum and Nikki, which will be nice. I think we're going to see that film about being a bridesmaid with Izzy from Grey's Anatomy in it.

Then after that, I might go along to my old workplace to see who's at tonight's teenage reading group. There is a very nice family who had children in each age of reading groups and I was going to tell them I was leaving at my last meeting just before I left, but they weren't there. I was really sad about that because they're so lovely and have always been so nice to me. I'm hoping that they'll be there tonight so I can explain that I haven't just disappeared!

Then it's home to do nothing. Well, I say nothing when I probably, no definitely, mean have a very long chat on the phone.

My last post was quite reflective - I was looking back at the last year. Well I'm feeling a bit like that now, but looking forward instead of back. This next year promises to be an interesting one. I have some big decisions to make and some changes to look forward to. I have no doubt that there will be lots of high points and several low points but from where I'm sitting right now, it looks like it will be worth it. Since the whole cancer experience, I've reevaluated what I want from life and recently I've been thinking about that even more. I've made up my mind about how I want to live and who I want to be. That was the easy part. Now I just have to do it!

So, there will probably be some weird and wonderful posts from me in the next year.

Rach x

Changes

2008-03-22T21:30:00.007Z

Yesterday was a year since I got my partial diagnosis of "some kind of lymphoma" and I was referred to oncology. Mum and I were given this information in front of a room full of people I didn't know. An interesting experience!

A lot has changed since then. A year ago, I was in a job I absolutely adored, working with and for people I loved working with/for. I lived and breathed work. I was in a long-term relationship. I was really quite happy.

Then I got the diagnosis and actually, I don't think it made me particularly unhappy. I still had my job, I was still in a relationship. The idea of chemo etc wasn't nice, but it was do-able.

A few weeks later, treatment started to change things though. I wasn't working so I missed it horribly. I kept in touch with people at work by going to the quiz every week (or every other week, depending on chemo side effects) and several of my friends made a real effort to keep in touch. I don't think those people understand how important that was to me. My relationship started to suffer.

Half way through treatment, I was pretty low. I was bored at home. My relationship was non-existent. I don't remember ever officially breaking up, but when one of you is sick and you don't talk for weeks on end, I think that generally means your relationship is over. When one of you doesn't visit the sick person at any point from before diagnosis until well after the all clear has been given, your relationship is dead.

After I'd been given the all clear, I returned to work straight away. I hated it. I was completely miserable. I loved the people I worked with but I found it impossible to work FOR them and to keep my sanity. I thought it was just me having difficulty getting back into things so I persevered.

Six months after I went back to work, I was probably at my lowest since the whole thing started. My job was horrific. My relationship was sort of alive again but very rocky and I was finding it very difficult to forget things that had happened (or not happened, as the case may be).

A few months on from that though, I'm in a very different place again. I have a new job. I know it's probably too early to say yet but I get the feeling that I'm going to love this job even more than I used to love my old job. Everything is just better. I do miss people from my old job, but my friends are still my friends so I haven't lost that. Quite recently, my relationship ended for good. It was time to stop flogging a dead horse and I think we both realised that. We were clinging on just because it was easier than admitting defeat and going back to being single. Honestly though, I could not have made that decision without the help of a very dear friend. I met this friend through the Hodgkin's forum, not all that long ago actually. We started talking about relationships and he gave me some very good advice (which I totally ignored, of course). We started talking about other things and it turned out that we have an awful lot in common - our experiences of the Hodge, our interests and values, our hopes for the future.

So now, I'm happy again. I have a job I love (already). I have a very close friend who I speak to pretty much all day, every day if I can. I have some important decisions about my life to make but they don't make me unhappy.

It looks like the wheel has turned full circle. Though there were some exceptionally low points, I wouldn't be where I am now without those experiences. If I hadn't had Hodgkin's, I would not have met Arif. I would not have discovered how weak my relationship with my ex was. I wouldn't have learned how true some friends are. And I would probably still be working in the job I had (and I would definitely be hating it by now, cancer or no cancer). Cancer has taught me a lot about myself and a lot about the world and it has made me ask the BIG QUESTIONS. You know, those scary big ones that make a huge difference even if you never get any answers. So, that's why I have some important decisions to make. I think I've made a good enough start. Cancer has made me realise that life is short and there is no point doing something that makes you unhappy if there is an alternative. I was unhappy in my job so I got a new one. Without cancer, I wouldn't have dared. And as for those big questions, well I don't have any answers but I am looking hard and I think I'm gaining just from that.

This has been long and rambly so if you're still reading, I thank you!

Rach x

Happy days

2008-03-11T14:01:00.006Z

Today I went for a chat with my new employer so they could get all my details (so hopefully I'll get paid!) and I could ask any questions etc. I got some fantastic news too - they want me to work on events!!! The person who is leaving currently arranges all the events for the store, so that's big events like author signings and smaller ones like children's activity sessions at the weekend. In my interview and on my application, I emphasised how I love doing stuff like that and they know the kind of events I've been involved in at my current job. They know that I've never done any big 'proper' events where I've arranged the full thing myself so they're very keen to support me with that. And until I get the hang of it all, I'll still be able to do stuff I'm more familiar with doing on my own.

I'm going to have a couple of mornings with the person who's leaving so she can do a proper hand over of all her contacts etc, but I'm sure they said that she's just moving to a different store so I can get in touch if I really need help with something. Anyway, I've got to learn all the basics first... computer systems, ordering, merchandising standards etc etc. Hopefully it shouldn't be too difficult to pick up. At least I've worked in a proper book shop for a few years now. When I first moved there, I'd worked at WHSmith, which does sell books but I'd never have considered myself a Bookseller. Now though, I know what people are going on about (most of the time). Hopefully it'll be different but not so different that I'm lost. Everybody seems really nice too and everybody is so happy compared to where I am now! That will probably be the biggest change - happiness!

I had a lovely weekend too. I met up with a good friend who also had Hodgkin's at around the same time as me. We never seem to stop talking! It's really nice to be able to chat to somebody who really understands what it's like. Other friends and family are great but, try as they might, they'll never completely get it. It's lovely to be able to talk to somebody about anything and then just suddenly change the subject to cancer and nobody gets shocked or upset or worried!

Rach x

Better late than never

2008-03-07T16:32:00.005Z

Today is exactly a year and a day since I first saw a doctor about a mysterious lump on my collar bone. I meant to post here yesterday but got busy with other things and forgot.

At no point was my cancer particularly life threatening but if it had been left, it would have got to that stage. I would say I thank God that I was diagnosed so quickly but I feel that that ignores the people who actually did the hard work. I'm so lucky to have been seen by such fantastic doctors, who didn't dismiss me like some doctors do when presented with Hodgkin's Lymphoma. My GP, Dr A, saw the lump and sent me straight off for a chest x-ray, which showed my tumours. Dr M at the hospital looked at my x-ray straight away and came in especially early to see me again the next day. Before a week had gone by, I had a biopsy and a week later I was diagnosed. It was scarily quick.

Now I'm eight months past treatment. It feels very strange. I'm now about to start a new job that I'm really excited about and I can put the last year behind me. Well, I can try!

Rach x

Guess who got a new job?!

2008-03-05T18:05:00.005Z

That's right, I got a new job and I'm over the moon about it! Anybody who's spoken to me in the last six months has probably heard me rant about how miserable I was at work and it all really came to a head recently. I applied for a job somewhere else, had the interview yesterday and they rang the same day and offered me the job! It's still working as a Bookseller (at the main local competitor to my old store) but the great news is that I will no longer be chained to the non-fiction section. The job is for the ground floor of the shop, which includes Fiction (and genre fiction), Front of Store and Children's. You can probably guess what I'm most excited about... Children's books!!! Even just working on the same floor is better than where I was. The shop is in the city centre too, which is great because I live two minutes away from a Park and Ride bus service, which drops off really close to where I need to be, so it's easy parking and not much driving. I think/hope that I'll be allowed to get involved with Children's events again. I was asked in the interview if I was keen to do that again (I'd said in my application and CV that I'd done it in the past) and I said a big YES! The managers who interviewed me were really nice, and while I was waiting for my interview I was listening to some Booksellers chatting and they seemed to be happy and friendly. Also, a MUCH better dress code/uniform than my old job, which is hugely important (ginger hair and red shirts are a big no no!).

Soooo, I'm one happy Rach at the moment! I will really miss my friends at my old job but I'll definitely be keeping in touch so it won't be too bad. I'll also really miss the children and parents from my reading groups, but at least this time I know they'll be well looked after. Last time I left them, I came back to find them reduced to nothing and had to build the groups up again. This time, I won't be going back but the person who I imagine will take them on is great and knows what she's doing at least!

I'm starving now, so food time!

Rach x

I scare little children!!!

2008-02-10T17:45:00.000Z

I had a very funny experience at work yesterday... well, I thought it was funny anyway. The little girl concerned probably didn't!

I run a reading group for 7-9 year olds, which I started before I went off sick with the Hodge. A lot of kids stopped coming while I was off work so most of the group now are fairly new but there are still one or two from when the group was new. Anyway, I was walking through the store yesterday evening when I saw one of the original girls who I think is 8 years old. She's really sweet so I gave her a big grin and said something along the lines of "Hello madam, how are you today?". She pulled a terrified face and scurried away as fast as her legs would carry her.

Her dad was a few paces behind her so I said hello to him and we both went our separate ways. A minute later, I was walking towards them again and I could hear her dad saying "And why didn't you say hello? Go on, say hello now." She looked scared again and whispered something to him, at which point I realised that she had absolutely no idea who I was. She knew me with long hair ten months ago, she's known me with a headscarf for the last six months but the new short hair was just too much for her to cope with. Poor kid! So I said to her dad, "I don't think she recognises me anymore!" and I reintroduced myself to her. She came over later for a chat so she mustn't be permanently scarred by the mad strange woman talking to her, but I'll be more careful in future. I think the older kids (about 10 years old to teenagers) are all fine with recognising just faces but I'll try not to scare anybody else!

Work was fun yesterday cos Jane asked me to do her reading group for her. They were the first reading group I started at that age group and a lot of them have been there from the start so it was nice to see them again. I felt very much like a supply teacher - when it's your group, you have to try to make them stay on topic as much as possible, in a fun way of course, but when it's somebody else's group, you can pretty much let them talk about anything, like when you get a supply teacher at school and they let you do whatever you want as long as you're quiet! They're a great group so they do tend to talk about good stuff anyway so we had a nice discussion about books in general and I think we chose an interesting book for the month after next. They did seem to think I'm about a million years old though; they were very surprised to hear that I'm only 23 and I could actually hear the high-pitched-whiny-noise-for-young-ears-only that they were playing on their mobiles. At one point, I threatened them with detention if the phones didn't go in pockets and they pointed out that I'm not a teacher so I can't do that. I very calmly informed them that teacher training only takes a year and they're only in the first year of high school so I could easily be their teacher at some point if I wanted to. One boy said that was impossible because he goes to a school quite a way away from work... turns out that the school is 2 minutes down the road from when I live so that made him reconsider the phone issue!

Well, it's my day off today so I've had a very lazy day watching Rome on DVD. It's quite good. Lots of blood and lots of sex. What more could a girl ask for?

Back to work tomorrow though. Somebody is on holiday so my days off are Sunday, Thursday and Friday which is unusual, but then I'm only back for the Saturday before I have Sunday, Monday and Tuesday off next week so it should be good. Saturday is one of my reading groups too, so it should be fun.

Righty-ho, I've just drunk a pot of coffee so I'm dying for a wee. Byeee!

Rach x

2008-02-02T22:26:00.000Z

A strange thing to celebrate, but today I'm celebrating the fact that five hairs fell out when I had a shower. I take this to be a good sign. Since chemo finished and my hair has been growing again, I haven't lost any hair. Before chemo, I would malt all over the place; I must have lost around a hundred hairs a day. Then during chemo, it all just fell out everywhere, which wasn't nice, but since it's been growing back, none of it has fallen out at all because each hair is too young. Today though, I noticed that a few hairs fell out in the shower, which I think must be because they're now old enough to act like normal. So yay, my hair is acting normal again.

Today was the first day I've braved going to work without a headscarf. I am now Rachel-with-the-short-hair, not Rachel-with-the-headscarf-so-she-must-have-cancer! A lot of people said nice things, especially some of the mums of tonight's reading group, which was very much appreciated. My only problem now is that people now know I do actually have hair, so I can't just wear a headscarf when I'm having a bad hair day. Damn it.

I feel strangely sad and happy all at once tonight. I've just been reading other people's blogs and forum posts and all of them make me cry and smile at the same time. It makes my forehead ache. I'm still catching up on everything that has happened during the last few months and some of it is heavy reading. I am in awe of all the people who blog/post about it though; they all seem to be able to find the goodness in any situation. In particular, Bekah's blog (click here) shows how wonderful a group of people are on the Hodgkin's forum. Bekah herself is pretty amazing and looking at all the support for her is heart-warming.

Rach x

2008-02-02T00:35:00.000Z

Well my blood counts were all within normal ranges so that's good. I've had no word about the chest xray so I assume that's good. If I'd grown another lung or something I think I would have heard by now.

Over the last few days, I've been revisiting the Hodgkin's forum that I used to visit a million times a day. I hadn't been back for a while, which I feel guilty about, but I just don't seem to find the time like I used to. Anyway, I've been back and it all seems so sad. In the last few months, some truly wonderful people have lost the fight with this evil disease and others have had bad news. It makes me feel guilty for being fine and it makes me scared because most people think they're fine, then the bastard returns. Mostly it just makes me so sad. This is "the good cancer" but there's no such thing.

I've run out of words. This must be my shortest post for a long time. I need to sleep anyway. I had another weird night terror/panic thing last night so I didn't get much sleep. I just feel so sad today.

Rach x

2008-01-29T20:48:00.000Z

Well, so much for me trying to lose weight! I've come to the sad conclusion that maybe the weight I lost about a year before diagnosis was weight that I lost because of the lymphoma, not just me starting to do more exercise. So now, even though I'm doing more than I was back then, I'm still not getting back to the weight I was. It's not that I've actually tried to lose weight - I'm still eating like a pig - but I had sort of hoped that I would just get back to my happy weight without trying. Maybe I'll stop living off chocolate and actually try a vegetable once in a while.

It's hard to believe that it's now six whole months since I had my clean scans, and about ten months since I found the lump on my collarbone. In terms of how I feel and how much I think about cancer, I don't really seem to have moved on from where I was about four months ago. The initial exhilaration at being given the all clear has worn off and I'm back to normal life, but it's still constantly on my mind. I don't have particularly bad thoughts, I don't do the 'what ifs' very often, but most trains of thought seem to end up back in the same place... cancer. It's strange. I suppose it was a big part of my life for four months, so it would be silly to expect myself just to forget about it.

I had an appointment with Dr B yesterday but I actually saw another doctor, his second in command I think. She's very nice and I saw her once about my weird night panic things but I don't actually know her surname, so I'll just call her Dr N. She just checked how I feel in general, which is fine, then did the usual poking of my neck to check for lumps. I think she felt that my nodes in my neck are swollen cos I've been fighting a cold, so she did a bit more poking than normal but didn't seem concerned. She actually showed me the trial protocol for follow up checks and it turns out that what Dr B said was totally wrong (and Mum heard the same as me when he said it, so it's not just me!). Men! I'll be having three-monthly check ups with bloods and chest xrays for a year, then it's six-monthly check ups for another year, then annual check ups till I reach the fifth year. If I wasn't on the trial, I would be seen for just two years but that's still a lot better than what we thought Dr B said, which was one more scan and one more appointment then nothing unless I have any problems! I was a bit miffed at having to get blood taken (it didn't even cross my mind that I would need to) and I wasn't happy about the xray either cos there's normally quite a wait, but the blood clinic lady was absolutely fantastic - I didn't feel a thing - and there was nobody else in xray so I went straight in. Well, I'll know what to expect for next time, which is the 28th April.

Work is no happier. I can't remember when I last had a moan about that so I'm going to do it now. I went full-time cos I quite need the money and it's nice to work properly, but I was expecting it to get back to how it used to be. Instead, it's now a place that makes me feel absolutely miserable. I like the people but I miss what I used to do there and that makes me a nightmare to be with. I feel sorry for my colleagues. Anyway, the worst bit is that my ideal job came up and they gave it to somebody else and fobbed me off, saying that nobody else wanted it or was willing to work the hours required. HELLO??? What have I been moaning about for the last year?! And yes, I just reduced my hours back down BECAUSE I WAS SO MISERABLE NOT WORKING IN THE CHILDREN'S SECTION and I told them that. If I had that job, I would work any day they wanted. So, I'm still looking for a new job. Well, I'm fed up of thinking about that, it makes me too angry.

I must say thank you to Marsha, who left a lovely comment on one of my postings here saying that she'd written something very similar to a rant I'd had. It was nice to know I'm not the only one!

Rach x

2007-11-05T15:47:00.000Z

It's been ages since my last post and I've been up and down like anything recently. Not in the fun way either.

One minute, I'm full of beans and excited about anything. The next I'm in a black mood and I just want to hide under the covers.

I don't know if I've written about this before so excuse me if I have, but it's on my mind so I'm going to babble on. It really bothers me that I'm still constantly thinking about cancer. To other people, I had cancer, I got treatment, I was given the all clear and that's it. They don't seem to understand that it's not over that quickly, if ever. For one thing, there's the possibility of long term side effects to consider (e.g. the breathlessness that I'm still experiencing) and the possibility of relapse. That isn't what bugs me the most though, as I'm quite positive about all that. If it happens, it happens and there's nothing I can do about it. Worrying doesn't help so I just put it out of my mind.

The most horrible thing is that I rarely go even half an hour without thinking of cancer or treatment or something related. It's not all bad stuff... sometimes I think about people I met during treatment, or I'll hear Bloc Party and it'll remind me of getting chemo, or I'll think about raising money for Rosemere Cancer Foundation. So, it's not all bad stuff I'm thinking but it is all cancer-related. For other people (apart from my fab mum and sisters) though, cancer is done and dusted and that's an end to it. During treatment, people were more than happy to listen to me talk about it and they were very supportive. Now though, it feels like I'm bringing up ancient history and I feel like I'm boring people and they're fed up of me. Maybe it's not true but I don't want to annoy anybody.

People don't understand about hair either. To them, it's all positive from now on. My hair is growing back (about an inch of even, thick-ish hair now) and that's something to celebrate and talk about. But to me, it's still something horrible. It's not about the growing back, it's still about having lost it in the first place. I'm not happy to go out in public without a headscarf. I know people are trying to be nice and to be supportive and to let me know that I can go without covering up, but I don't want to. I'm not ready yet. To me, hairloss is like having a huge visible sign of cancer, like a scar, and to see it getting better is good but it still makes me feel horrible. You wouldn't ask somebody when a scar was going to heal and I don't see why people think it's okay to ask when my hair will be back. I do know that people are trying to be nice but it just makes me feel like crap, and then I feel guilty too for feeling angry at them.

So, you see, people just can't win with me at the moment. If they don't talk about it, I feel alone. If they do, the only thing they really know to talk about is my hair and then I feel nasty.

I had a lovely dream last night where I did my hair then looked in the mirror and realised that it wasn't as short as I thought. In fact, although it was still only an inch long, the way it was lying on my head made me look like I had a beautiful chin length bob. Weird but nice!

I forgot to say at the beginning, I went for my CT scan and it was fine. Nothing unusual so we do know that there's nothing tumoursome (good word, I just invented it) going on. The breathlessness is probably just some lung trouble related to the chemo drugs. I have another appointment in January to check up on it. If it's not better by then, I think I'll be referred on to the lung doctors. Fingers crossed there'll be no need.

This morning, the most beautiful dress in the world arrived for me. It's grey tweed and pencil-skirted. Only trouble is, I ordered it in the size I should be, rather than the size I am. I fit in it fine and it looks lovely even if I do say so myself, but sitting down may be a problem with my big fat ass trying to split seams. Well, seeing as it is a perfect dress and the next size up may be a bit too big, I'm keeping it. I've hung it on display on my door so I can see it all the time. I'm going to look at it whenever the chocolate monster calls, until it fits me comfortably. I may even take up some light exercise too, lungs permitting. So now, this may become a weight loss blog for a bit.

I was about 8 stone 5 pounds (117 pounds) before chemo and I'm about 9 stone 5 pounds now, so I'm determined to lose that extra stone (14 pounds). I'm giving myself a month to do it. I think that's quite reasonable. When I started working where I work now, I lost about that much in the first two months without trying (just down to extra activity I think) so I should be able to do it if I try hard, especially in the pre-Christmas rush at work. I will look good for Christmas.

In Bridget Jones stylee, here we go:

Today

Weight: 9 stone 5 pounds

Eaten: errr a piece of chewing gum. I'm healthy like that.

Drunk: Pot of coffee, milk no sugar.

Exercise: I reached for the remote when I was in bed. Does that equal one sit up? Also, reached up to high shelf for my shoes. That's one of those stretchy things you do in aerobics.

All done for today,

Rach x

2007-09-24T18:27:00.000+01:00

Well, I'm in a better mood today. I was asked to do some extra hours at work, so my previous rant about that is null and void. And a person who I thought had been avoiding talking to me properly since I went back to work after the big C, did talk to me properly and it turns out that, actually, not everything is about me. I know, shocking isn't it? Perhaps as well as making me mean, cancer has also made me even more self-centred than I already was. I didn't even stop to consider that this other person might be having problems of their own, I just assumed it was something I'd done/not done. Well, that shall be my lesson for the week - it is not all about me.

Having said that, it's my birthday tomorrow. I will be 23, which feels an awful lot older than 22. I think I'll probably go out for dinner with the family (Ems is coming home from uni), then go to the work quiz (couldn't possibly miss that after we did so well last week), then out for a few drinkies. It should be an okay day, except for the fact that I'm working from 9am to 2pm. Grrr.

I saw Dr B again today. He said there was definitely nothing remarkable on my chest xray but he still doesn't want to put everything down to chemo damage, as then it'll be on my notes and every time something goes wrong in future, doctors after him will automatically assume it's the same, which is very sensible of him I think. So, I've got a CT scan in a few weeks, then I'll see him again. At least we've ruled out any tumours, so I'm quite happy. Plus, it's an excuse to walk slowly everywhere.

Well, I may do some very important watching of tv now.

Rach x

2007-09-18T16:14:00.000+01:00

Cancer has made me mean. Okay, well maybe I was always mean but I seem to be showing it a lot more now. I have less tolerance for people I don't like and people who do stupid things and I don't really care if people think I'm mean. At least before, I used to hide it a bit. Now I just say what I think. It's quite liberating. I've yet to conquer the bit where I actually tell people what I think of them - at the moment, I just tell everyone else what I think of them, which is two-faced I suppose but I really don't care. Being nice and doing the right thing doesn't get you anywhere.

Take work for example... I worked my previously-pert-but-not-so-now bottom off in that place when I was on the kids' section. I didn't do anything wrong, in fact I did a lot right and spent an awful lot of my free time doing extra work for free. Did it get me anywhere? Did it fuck. I spent a lot of time doing posters and other promotional stuff in my own time. I didn't mind. I enjoyed it. But where am I now? I'm bloody miserable, that's where I am. Even while I was off sick, getting paid SSP rather than proper sick pay, I was still doing computery stuff for them. I enjoyed it. But did it get me anyway? Like hell it did. I went back to work as soon as I'd finished my chemo... the doctor would probably still be giving me sick notes now if I wanted... and now I'm miserable. And because I was dedicated I probably went back far too early, so now I'm miserable and there's not much I can do about it. But when I'm miserable it shows and it was quite clear that I wasn't happy at work and I did some searching for new jobs. But did the fact that I'd just recovered from cancer get taken into account? Yeah right. Now, I'm the miserable one who isn't dedicated to the company so there's no chance of me getting any extra hours (and the money is sorely needed) so I am actually going to have to leave. And one last gripe... we have to collect email addresses from customers. If you're happy, you collect a load, well I always did anyway. Now I'm miserable and I still ask exactly the same thing but I'll soon be in trouble for my dire collection record. Well adjust the bloody target for me. I'm special. Like that's gonna happen.

This turned out longer and more miserable than I planned. Well sod it.

Rach x

2007-09-17T14:50:00.001+01:00

I saw Dr B this morning. He was really helpful. He sent me for a chest xray and I had blood taken (FBC). The chest xray is to see if there's anything dodgy going on lung-or-tumour-wise and the blood test is to see if there's anything weird happening there (anaemia etc). I'm going back to see him on Monday for results but a little birdie tells me that my bloods are fine and my xray looks good too.

Dr B was actually better than I expected. I thought that he might just say that the breathlessness and coughing was due to the bleomycin causing some lung damage and tell me to wait and see if it gets better, but he was really understanding and keen to rule out anything lymphoma-related, even though it's highly unlikely to have come back. He did say that some people only really notice the bleo damage once chemo has finished (maybe because I'm a lot more active than the slug I was during chemo) so it's quite likely to be that, but he wants to rule out anything else first. It could be a virus of some kind - apparently, the chemo will have aged my body so I'm not as able to fight off bad stuff now. Anyway, if the xray is reported as fine, I think Dr B might move my CT scan, which I'm due for in another 4-6 weeks anyway, forward just to rule out bad stuff. If that's fine and I'm not infected with gross germie stuff, then it's most likely to be the bleo. I think he said that you normally just have to wait and see what happens and after maybe 6 months, look at seeing a chest doc. Sounds okay to me. All I really wanted to know is that it isn't being caused by tumour. I'm happy enough to have a chest infection or a virus or even lung damage! Sounds daft, I know, but it's true.

Well, that's all for now.

Rach x

Untitled

2007-09-14T22:42:00.000+01:00

I didn't speak to Dr B on Tuesday. His secretary rang and made me an appointment to see him on Monday (17th Sept) instead. I still want a chest xray, though the cough is bothering me less now. Mum says that it's just that I don't notice it as much anymore. Apparently, she and my sisters do. Well, we'll see what he says.

I'm not feeling too great at the moment to be honest. Apart from the cough, I feel fine physically, but mentally I just feel worn out and fed up. I have more energy than I have for years but I don't know what to do with all the extra time I spend awake. I don't have all the extra fun stuff I used to do for work anymore, so I can't spend my time doing that. I do still have the Leyland Warriors stuff but it doesn't take up long and my ability to concentrate isn't great. I can generally manage about half an hour of doing something before I need to switch to something else.

While I was having chemo and having those horrible night fear things, I got into the habit of never letting my mind rest. If I did and I let my thoughts wander, I would start to get one of the panic attack-type things so I quickly learned to keep my mind occupied. That's fine when there's something worthwhile to think about. At work, I'm pretty much constantly on the go so it's easy, but when I'm at home and not doing much, it's exhausting trying to constantly be thinking. I've not had any weird night things since the chemo stopped but I can still sometimes feel it creeping up on me. Even if it wasn't haunting me, if I let my mind wander it always ends up going over the same old shit that I'm fed up of thinking about. It makes me feel angry and bitter so I'd rather not think it, so I have to keep thinking of other things. I'm just tired and tearful and fed up and generally pissed off with life. It seems cruelly ironic that I've just spent three months having chemo to make me well, but now I am well, I feel so crap. I'm happy that I'm okay but I'm inexplicably sad a lot of the time. I need a new direction, a purpose in life and I'm desperately looking for one but I've had no luck so far. I feel guilty, too. There are people out there who won't get better and they're managing the best they can, but I'm here, told I'm in remission and I'm not happy. I'm just a miserable old grouch. I'm sure it will pass.

Rach x

Bleurgh

2007-09-08T21:50:00.000+01:00

Dr B is supposed to be ringing me on Tuesday to talk about the cough and breathlessness thing but I've just realised that my supervisor has switched my work days so I'll be at work until 1400 so I might not be able to speak to him. That's shit. The nurse mum spoke to on Ribblesdale didn't seem bothered when she spoke to her... 'it would be really rare for the cancer to come back'... well yeah but it was rare to get it in the first place and it doesn't stop us worrying. The GP I went to see was also as much use as a chocolate teapot, talking about being reluctant to give me antibiotics. I don't want antibiotics, you muppet, I want a chest xray just to put my mind at rest. It's not exactly difficult. You get a little form out of your fancy doctor desk, you fill in my details and you tick the chest xray box. Humph.

I get the feeling that Dr B will say that I shouldn't worry, my CT and PET scan were fine, it's probably just bleo damage to my lungs, and he won't do anything. Well I'm sorry but that's not what's going to happen. I want an xray and I want blood drawn. My blood, not his. I might just be anaemic but we won't know until somebody decides to do what I say!

Grr.

Rach x

Back to normal I suppose

2007-09-06T10:46:00.000+01:00

I haven't written for ages because I haven't had anything interesting to say. It would've all been complaining about work, which isn't really fun to write and it definitely isn't fun to read. I think it's enough to say that although I am still working where I was before the Hodge, I am looking for work elsewhere, preferably within a childcare setting, though it would have to be somewhere to take me on with no childcare qualifications. Still, the pay can't be much worse than I'm on now and it would be something I would really enjoy.

Nothing much else has been going on really. There's been a work night out (where I got very drunk, as usual) and a night in the pub (where I showed my amazing skills at pool) and not much else. Dave came to visit on Monday, which was nice. Still not sure where we are, relationship-wise.

I shaved what was left of my hair off, maybe two weeks ago, because with it all raggedy it was very difficult to tell if it was starting to grow back and it was just nasty. Now I have a nice fuzzy head, so it's definitely growing. I can understand why some people choose to keep their hair very short - it's so easy! I'm still wearing a headscarf though. I think I probably will for at least a few more months yet. I've never had short hair by choice so I just want to wait till it's normal again. Plus, wearing a headscarf at work means that customers (apart from one snotty stupid shit of a woman who was complaining about books not being on offer yesterday) are really nice to me. I think they must assume that it's because of chemo so they're ever so grateful when I offer to get them something or show them where something is, especially older people. One lovely couple made a point of telling a colleague how lovely I'd been to them. Well, there have to be some perks to this cancer lark.

Now back to cancer. Woohoo. It's really weird being in remission, or whatever the doctors want to call it. It's still a huge part of my life and it will be for a long time, but people are already starting to forget and, irrationally, that annoys me. Well, not annoys me but it's horrible that people don't understand. Everybody knows I'm okay now and that's it as far as they're concerned. My mum and sisters are great because they went through it with me so they understand and I think they're on the same page as me, but it's just weird with other people. I have a bit of a cough at the moment, which is worrying because I had a cough before chemo (that I never even really noticed, it was just something that was there) and it went after the first few chemo sessions, I assume because the tumour in my chest was shrinking. Now, when I'm a few months post-chemo, I'm coughing again. Just a niggly little cough, but still a cough. It's probably a bit of a cold or something, but there's always the possibility that it's not. I mentioned it to Dave and he just said "I haven't noticed it" and that was it, even though I explained about the tumour thing. I suppose other people just want to think that everything is fine until I tell them something else. They don't want to concern themselves with what ifs and maybes. My family understands though. As I write this, mum is at work and has been speaking to some doctors about it. They think I should go for a chest xray so mum's going up to the cancer unit to see what they say. I'm supposed to be working at three o'clock but that will just have to wait.

I've run out of steam now. This getting up early thing is exhausting. I never realised how much energy a person is supposed to have. I just thought I was lazy and was perfectly happy to sleep for 14 hours a day. Now, I can barely managed to sleep for 8 hours and I wake up early every day. Physically, I have loads of energy but it's mentally draining being awake for all those extra hours. I don't know what to do with myself!

Rach x

Work is crap

2007-08-19T16:09:00.000+01:00

In case I haven't told you, I didn't get the Stockport job. I was kind of relieved, to be honest. It was an hour's drive away and I was starting to wonder if I'd rushed into it. I would've taken it if they'd wanted me and I would've enjoyed it, but I think now is the time to enjoy myself and my new-found energy, not spend all my time working and travelling and tiring myself out.

I've been back at work for two weeks now. I've got another week part time (20 hours) then I think I'll be full time. Not sure what my hours will be like yet. It's good to be back and around people again, and the headscarf is working wonders on the customers - they're all being really really nice to me and about me. I don't suppose they feel comfortable being rude to a 'cancer victim'! Ha. It's nice to see everybody more often and I'm enjoying the customer part of work, but I'm not so sure about the job as a whole. I agreed to work on Front of Store, so all the new and promoted books, but I'm starting to think that it was a stupid idea. Yes, there's lots to do, but there's nothing to get into. In the kids' section, I was really into the books and I spent a lot of time with kids. At FOS, it's all a mish mash of stuff that I'm not particularly interested in. Well, time will tell. I've spent a grand total of two hours there over the last week. Maybe it's just unfamiliar, but at the moment, I'm actually thrilled to be put on the tills for an hour if it means I don't have to work on FOS. That's really sad.

What I am really having a hard time with is not being in the kids' section. I just want to be back there like things used to be! It was so much fun. Now, every time I walk past it, I feel miserable. Hopefully that will pass, but I can't see it.

I've seen a job advertised in the library in Preston. I think I'll apply for it. I'm not sure exactly what it entails but the pay is about the same as where I am now, and even if it was a horrible horrible miserable job, I'd be no worse off than I am now. I'd rather be miserable somewhere new than be miserable somewhere that I've been really happy. At least then I wouldn't see the contrast all day every day.

Well, that's pretty much all I have to say. Work is miserable and it's making me miserable. I hate work! Fingers crossed that it gets better. I used to love it so much. Shit.

Rach x

Not a grump but tired

2007-08-11T11:40:00.000+01:00

Thanks for everybody who tried to cheer me up after my paddy in my last blog! I'm feeling more cheerful now, thank goodness.

I went back to work on Wednesday... starting at 9am. Anybody who knows me well will know that I normally only work afternoons and evenings... I don't mind staying up late but getting up early is not my cup of tea. It wasn't actually that bad though... since I've finished chemo, I've been waking up early anyway. It is nice to be back and to see people without just being the weird person who hangs around when she's off sick, but it's also been a bit disappointing. I suppose I was looking back at working with rose tinted glasses. I haven't been asked to do anything horrible, in fact, they're breaking me in gently and letting me do the good stuff, but I used to have a definite role there as a Children's Bookseller. Now, I'm just a Bookseller and I haven't been given a section to look after cos I'm still waiting to hear if I got the job in Stockport and they don't want to count on me being there if there's a chance that I might not. So, I feel a bit displaced... all my expertise (yes, I like to think I'm an expert, so call me immodest!) is in the children's section but I feel like I'm stepping on toes if I hang around there too much. It's not my job to talk to children and help them find their books any more than it's my job to help someone in the sport section. It is quite nice, though, when you walk past and one person asks you a question and then you get a steady stream of people wanting your help and you can actually help them. At least I haven't forgotten anything. I just need to get up to speed on new releases.

I was bitterly disappointed to discover that one of my book groups for 10-12 year olds has been allowed to disappear. It was the second group for that age group and was still relatively new when I left. It had about seven children signed up back in March, so it should have been pretty much full by now with maybe ten or twelve members, but people have stopped coming and the few that do still come have been moved to the other group. That's really sad. It was a promising group. I know that the other 10-12 group has been well looked after. I'm going to check on the group for 7-9 year olds and I want to see the teenagers too. They sent me a nice card while I was off and it will be nice to see them again. Hopefully, those groups are still going strong. I will be having words if not!

I should hear whether I got the Stockport job on Monday. Before I went back to work, I really wanted the job but I would also have been happy to stay at Preston. It's familiar and near home and I know everyone well. Stockport is my ideal job, does a lot better than Preston money-wise and would really give me something to get my teeth into, but it's a lot further away. Now though, I'm not so happy at Preston. I don't have a place there anymore and the place that I want, I can't have. I would be happy to stay there for a while, but I won't make a secret of the fact that if I could work in the children's section somewhere else, I would jump ship in a second. I feel guilty for saying that, but I want to be happy and I won't be there.

Today I'm working at 3pm. I think there's a craft activity going on and I'm down to work in the children's section while it's going on. It will be a mighty test of my will-power to see if I can refrain from butting in. I will not interfere. I will not interfere. I will not interfere!

Rach x

Big old grump

2007-08-07T00:29:00.001+01:00

I'm in a grumpy mood. I have to get up early tomorrow to ring the doctors' to get an appointment to see my GP. Well, I say my GP but she's not actually mine. She's the doctor I saw who started the diagnosis process going and I've been going back to see her ever since because she's so lovely. The only problem is that she's only in once a week and that's as an emergency same-day-appointment-only doctor, so you can't book an appointment in advance. Hence the ringing the surgery at 8.30am to try to get an appointment. Grrr.

Also, my hair is still falling out, which is pissing me off. I suppose it could just be normal daily hairloss because I always lost an awful lot each day before chemo, but losing the normal number of hairs is just no good when you don't have that many to lose. I don't even know if it's starting to grow back yet. And I'm SICK of people asking me about it. I mean, COME ON PEOPLE, don't you have any brains at all?!

Let me see... 22 year old girl, long (strawberry) blonde, perfectly straight and shiny hair, will never cut it shorter than shoulder length because she really likes her hair, suddenly loses her one beauty due to toxic drugs. What part of your tiny little brain makes you think that she won't be incredibly sensitive about it and definitely won't want to discuss it with anybody but the people closest to her? Are you terminally dumb? I can tell you now, if you try it again, I will MAKE your stupidity terminal. And I will stretch out your death, I promise you that.

I don't mind talking about it if I bring it up. That means I like you and I know you well enough to discuss it with you. But really, is asking me "Do you actually have any hair?" appropriate or sensitive or considerate? (The answer is no, by the way). I would never say it to you face-to-face, but I'm beginning to despise you and your idiocy. You're bordering on disgusting.

Well, as you can tell, I'm not very happy. Rant over now I think. Oh, no, hang on... I have GOAT eyebrows. They thinned down during chemo and they're starting to grow back but they're baby soft and stick out everywhere. I don't want to pluck them though; that seems like a stupid thing to do when I'm so grateful for a few hairs. Good job I'm blonde.

Oh, and you people who regularly comment on the headscarf - SHUT UP. Don't touch it, don't talk about it. I feel like enough of a freak already without you reminding me about it. If you'd just shut up, I'd be able to forget about it and think like a normal person.

Right now my rant really is over. If anybody I live with is reading this, I don't mean you so ignore me. I'm sure I'll wake up feeling better in the morning. I'm just being a grump.

Nightie nightie.

Rach x

Woohoo!

2007-07-30T18:19:00.000+01:00

Okay here we go... my CT scan report says "radiologically, appearances are those of a complete remission". COMPLETE REMISSION! The PET scan report, though I didn't get a copy of that one, basically says that there's nothing unusual going on in my body, so woohoo, I'm cancer-free! Also, the second bit of good news is that I've been randomly assigned to the trial group that gets no more treatment so I'm free to do whatever I want. I just have to go back to see Dr B in two months for a check-up.

My appointment with Dr B was short and sweet. We actually spent half of the time discussing the American health care system and how the UK's way of doing things is so much better. Sorry to any Americans reading this but free health care for all is the way we like things!

Then, I went and had my picc line removed straight away. Now I can have a shower without having to keep my arm out of the water. I'm going to have the longest soak in the history of mankind!

Thank you to everybody who's been so supportive and kind while I've been having chemo and waiting for results. I'd list you all but I'd be sure to forget somebody and then I'd feel bad. Anybody who's sent kind messages or advice, anybody who's cheered me up when I've been down, people from work who've been filling me in on the gossip and been so good about when I'm coming back... there's plenty more things that people have done but I'm a bit dizzy today. I'm sure you know who you are if you've helped me. I can't not mention my amazing family though... but will the cancer card still work? I can no longer say "you can't tell me off, I have cancer" but I think "you can't tell me off, I'm recovering from cancer" will do nearly as well, so sorry mum and blisters, your ordeal is not over! Thank you to everybody anyway.

I'm feeling a bit weird cos I'm happy because of my results but I have a job interview in Stockport tomorrow so I'm nervous about that. Wish me luck!

Rach x

Scans all done...

2007-07-25T15:29:00.001+01:00

We (Mum, Nik and I) got back from London last night. We went on Sunday afternoon, I had my PET scan on Monday and we got to spend Tuesday shopping. We also managed to eat an awful lot of very good food - thankfully, my tastebuds are more or less normal now (if anything, they seem more sensitive) so it was not wasted on me.

The PET scan was okay really. I was expecting the hospital to be really nice but I have to say I was quite disappointed. Maybe I'm just spoiled because the oncology unit at my local hospital is quite new and is really nice, but St Thomas' seemed a bit grotty in comparison. The PET scanner is down in the basement and is down these really dingy corridors that feel like somewhere in IKEA - I did wonder if we'd somehow managed to come down the wrong way and were trespassing in the staff only bit, but apparently not. I didn't expect the staff to be as friendly as in Preston because they don't know me, but they were all exceptionally distant. Professional and perfectly nice, but not at all friendly. It could be a London thing, although most of them seemed to be Australian.

They took me through to get started as soon as I arrived (which was half an hour early) and told me that I HAD to go to empty my bladder, even though I'd only just been. Then I changed into a sexy gown and they injected me with the radioactive glucose stuff then left me to lie still for an hour and a half, without reading or talking. How boring! I did get to laugh at a stupid woman though. Her mother was there for a scan and she was desperate for her mother to need her - she talked to the poor woman like she was a child - "don't worry mum, they'll come and get me if you're scared when they put you in the tunnel". I mean, COME ON! The mother sounded perfectly with it and didn't seem scared at all. And to adults, it's a scanner, not a tunnel!

The actual scan took 30 minutes - that's 30 minutes of lying perfectly still. Of course, my left leg started twitching after about 10 minutes, but they didn't say anything so I think I managed to control it enough. Then they kicked me out and I spent the rest of the day shopping and eating with Mum and Nik.

I didn't actually buy much - just a few tops - but it was nice to look. I forgot to go back and buy some shoes I wanted, but we have the same shop in Preston so I can get them here anyway.

Now I just have to wait for the results. I had a CT scan in Preston on Friday and I'm seeing Dr B on Monday, so he should have the results of that by then. For those who don't know, here's an unscientific and possibly inaccurate intro to scans:

CT scans are like x-rays but they're super detailed. They show what's where... so if you have a tumour, it should show up as an unusual lump.

PET scans look at where activity is in your body. You're given a kind of radioactive glucose and since glucose is used for energy by your cells, it travels to where the most activity is. Cancer cells use a lot of energy, so when the scanner then scans your body for the radioactive stuff, cancer should 'light up'.

So, CT scans show lumps and bumps, but not what they are. PET scans don't show lumps and bumps, but do show active areas (cancer is active, but so is infection and some other stuff).

The CT scan will show the size of my tumours, BUT my type of Hodgkin's is characterised by bands of scar tissue running through the tumour, so size alone won't tell everything, since the scar tissue won't be vamooshed by chemo. Obviously, I'm hoping for significant reduction in size, but I don't know how much of each lump was scar tissue. Of course, there is the other possibility that the tumours have grown. That wouldn't be good. I can tell just by feel that the one on my right collar bone is smaller and I no longer have a persistent nagging little cough, so I think the one in my chest is smaller too. I'm trying not to think about it too much though. I'll just wait for some proper news.

I think the results of the PET scan will be at least a week, maybe two. Then I'll see Dr B again and find out where I stand with regards to the trial.

A lot of people on the lymphoma forum I visit are having scans at the moment, too, but most seem to be people who've finished all of their treatment. I'm trying not to get my hopes up too much, since technically, I'm about half way through my treatment. Normally, I'd have another month of chemo and 17 days of radiotherapy left, so if I'm not clean, it's not the end of the world. I do want to go back to work though, so I've got my fingers crossed.

Food time now.

Rach x

2007-07-16T21:31:00.000+01:00

I wouldn't bother reading this... it's a load of rubbish. No interesting or new information, just me drivelling on about boring stuff. Come back tomorrow!

It feels weird to say it but I'm desperately trying to be more negative at the moment! I've got this PET scan coming up and my brain still seems to be stuck in the 'cancer won't happen to me' mindset. Okay so that didn't quite work out and I did end up with the dreaded C but I know that Hodgkin's is very curable and I'm quite early stage so it really doesn't feel that serious. Ask me about it next time I'm in agony or when I actually get round to measuring my new waistline and I might've changed my mind, but at this moment it doesn't feel like cancer. Not the kind you see on TV or soppy films where there's a skinny pale thing in a bed with a brave smile. So anyway, even though I'm desperately trying to be realistic, I keep rejoicing that my chemo is over and I'll be able to get back to normal soon, even though, even IF my PET scan is negative, I still have a 50% chance of more chemo then radiotherapy, which will probably take me to at least the beginning of October. But still, I won't listen to myself and I'm being all happy and optimistic and thinking that it's all over and done with, when there's a more than 50% chance it's not. I know you're always supposed to be optimistic, but at this stage I'd much prefer some pessimism so that I won't be disappointed. At least if I'm prepared for more treatment, I'll either be right and I'll be ready for it, or I'll be wrong and it'll be the best present ever!

All this blasted optimism is making me think about the future. Up until the Hodgkin's, I was working as a Bookseller in a job I absolutely adored. Seriously, you can't even begin to understand how much I loved that job. So much so that I probably spent as much time at home in my free time doing stuff for work as I did when I was actually being paid. It's sad but true. It was my perfect job - working with books, working with children, being able to be creative and play and having the freedom to bring in my own ideas. Best of all was the feeling that although I was basically a 'shop girl' (boo hiss), I was actually making a difference in that I was encouraging kids to read, which has got to be one of the best things you can do.

But (here's the big BUT and it's not the one behind me), just as I was being diagnosed, things were shuffled at work and my job is no longer working on the children's section. In fact, I don't even know what it is anymore. I went off sick before it was sorted and there've been new people starting since and everything is covered now. I do still have a job to go back to but it's not the same job I had. Okay, technically, it's the same job, the contracts just say Bookseller, but it's not a Children's Bookseller. And that puts me at a bit of a loss really.

The whole cancer thing, when I think about it seriously for a minute, has changed my life. Before, I didn't know what I wanted to do with my life. I was very aware that working in a shop is crap and that people look down on you. In truth, I looked down on myself for it a bit. It seemed a waste. All those years of being told I'll go far, could do anything I want etc. and I end up working in a shop? It seemed silly. But I was happy doing it, even though it made me unhappy when I thought about what I was actually doing with my life. So even though I was happy doing my job and would have been forever, I was ambitious too. I'd have worked my way up, trying to do something that makes a difference but that was along the same lines as what I was already doing.

Now though, I don't care about what people think. I don't even care what I think about myself working in a shop. I just want to do something that I enjoy and I don't care about the job title or the money or any of that stuff. The bugger is though, that now I've realised that I want to do what I was doing and that I don't actually mind doing it, I can't do it anymore because the job isn't there! That's life for you.

So what do I do now? I have to go back to work and make the best of it, I suppose. People say that I might enjoy doing whatever it is I'll be doing. Some other section (not History, noooooooo!) or spending all day on the tills like a bloody moron ("would you like a bag with that?" *dribble dribble*). So, I go back to work and give it a go. But in my heart, I know that I'll hate it. I'll enjoy the people and the actually working instead of sleeping all day, and I'll enjoy helping people, but I'll always be wanting to be doing something else.

I want to work with children. I want to work with books. I want to work with children and books. And I can't do that where I am. People have said that I can still work my way up where I am, and I probably could, but I really don't want to. I don't want to be a supervisor or a manager. Those jobs are no fun. It's about keys and floats and people being sick on the carpet and making sure Starbucks is finished on time. I want craft sessions and games and glittery fingers and costumes and getting children to read. Hands on stuff. How the hell I do that now, though, is anybody's guess.

Maybe I'm looking at it wrong. You're not supposed to enjoy your job. It's supposed to be boring and demoralising and mundane. Your hobbies are your fun times. Well, I guess I'll be doing a lot of volunteering in future then. Mundane work here I come.

Woohoo. I've depressed myself now. Chocolate. Now!

Rach x

2007-07-14T22:43:00.000+01:00

I'm bored bored bored. It's Saturday night and I have nothing to do. I could be doing some voluntary computer type work but it's all a bit pointless at the moment. There's nothing good on tv. I've just finished a book. I didn't win the euromillions jackpot so plotting my takeover of the children's book sector in Preston is a little premature. I keep losing at computer solitaire.

In other exciting news, I'm not sure if it was the picc line causing the breathlessness after all, though it definitely won't have helped. I still feel a bit short of breath, though I'm pleased to announce that this is possibly due to my dress being too tight 'up top'. Steroids may have given me a fat face but they have also increased my size in more pleasant ways too! Now just to selectively lose fat so that I can get back to my former svelte self while retaining the bits I like. Hmm.

In case you don't know, the chemo I had this week was my sixth lot, which is part 3b. The initial course of treatment prescribed was four cycles of chemo (so eight doses over four months), followed by seventeen days of radiotherapy. However, I'm part of a trial that is looking at whether PET scans can be used to reduce the treatment. That's why I'm off to London next week for my three-cycles-complete scan. If the scan comes back negative, i.e. no areas lighting up as cancer, there's a 50-50 chance of me having no more treatment (so I would get one cycle of chemo less and no radiotherapy) or carrying on for the full lot. That's just randomly assigned. If it comes back as positive, I assume I'll carry on with the normal treatment and then reassess at the end.

Obviously, I'm hoping that the scan will be negative, but if it is I really don't know whether I'm hoping for more treatment or not. This is all still a trial, though quite an advanced stage one, so they don't know that reducing the treatment is as effective as having the standard treatment, so it could possibly mean that the Hodge could come back. On the other hand, radiotherapy has well-known risks associated with it, things like breast or lung cancer further down the line, which I'm not keen to get either. Luckily, it's not up to me. I just get randomly assigned to a treatment group, though, of course, I can withdraw from the trial at any time.

Part of me says that the Hodge can kill and it would be stupid not to do everything possible to get rid of it once and for all, so have the chemo, have the radiotherapy, hell, even promise to eat twenty portions of veg a day if the doctors say that will help. But the other part of me is saying that I'm sure the treatment I've already had has worked (after all, cancer is what happens to other people, hehe) and I really really don't want to increase my risk of other cancers. It's a debate that everybody has an opinion on but nobody has the answer. Yet. Hence the trial.

I'm really tired but I'm not going to bed until I'm super tired. I don't want to risk waking up terrified in the middle of the night again. It happened again last night, well it was about half five in the morning, grrr. I'm not a happy bunny!

Might go to see if there's something good on tv. If not, it's back to the solitaire.

Rach x

2007-07-13T13:20:00.000+01:00

It feels like ages since I last posted... I've been very busy doing nothing as usual.

Thanks to everybody who's emailed and left me messages, especially about the crazy thing. I've been to see the doc at the hospital since I last wrote here but she didn't really know what to say about it. It doesn't seem like a reaction to any of the various drugs I'm on because it doesn't just happen in the week I have chemo. In fact, until this week, it had only happened in my week off. The doctor was really nice but admitted that I'd stumped her. Either it's a physical reaction to something or it's a mental/emotional thing, but neither seems to fit particularly well. She's referred me on to talk to somebody else, a psychologist (woohoo!), who might have seen it before or will maybe have more of an idea. Until then, it's just a matter of waiting to see if I'll wake up terrified! Unfortunately, the suggestions some people are giving me won't help - I can't stop myself doing it because I'm asleep and have no control when it happens, I'm not stressed and I don't believe in God so the Bible is just a story to me. I get the feeling that Jane's suggestion may work though - SHOES! I'm going to London for my PET/CT scan on the 23rd July, which seems like a perfect opportunity to try that solution.

Even though she couldn't help with the craziness, the doctor I spoke to may have found the cause of my breathlessness, which is nice. Apparently, my picc line was too far in and was fiddling around with my heart valves. I had it pulled out by about 5cm yesterday. It's really strange cos it's worked fine all the way through chemo. Weird.

Well I have nothing else to write so it must be time to go back to bed.

Rach x

I always knew I was a CRAZY!

2007-07-06T01:02:00.001+01:00

Well, I eventually got to see Dr B, though it was a day later than planned. Some inconsiderate truck driver managed to explode his dangerous cargo on the M6 near here so all the traffic was diverted onto the A6, which, of course, is the road that runs pretty much past my house and is my only route to the hospital. Preston was brought to a standstill for most of the day... even moving my appointment with Dr B to the afternoon didn't give me enough time to get there, so I went to see him on Tuesday instead.

Since my breathing doesn't seem worse and I've not had a temperature or any other symptoms, Dr B is pretty sure that the breathlessness is being caused by the bleomycin doing some lung damage. However, since I only have one definite chemo left and the breathlessness isn't serious, we're leaving it in the chemo cocktail for the next one. If I need more or if it gets worse, we'll reconsider. Dr B said that as long as we don't let it get serious, the lung damage will heal itself when I finish chemo and it's not really bothering me much so that's all fine by me.

What is bothering me is that I've turned into a crazy person. And I don't even mean in the normal crazy way that you're used to. I mean in the barking at trees kind of way. A while ago, I went through a weird thing where I'd wake up an hour or so after going to sleep and I'd be absolutely petrified, so completely scared that I'd start to cry and wouldn't be able to stop. The crying would just get louder and louder until I was about to scream, when I'd realise that I was about to wake people up and eventually manage to cry more quietly. I wasn't scared of anything real. I wasn't scared of dying, like in a panic attack kind of way, I was scared of something that I can't describe. It was like there was this huge important concept that I couldn't grasp and my mind would keep going round and round until I cried. Every time I let my mind relax, it went back to this scary thing and I was petrified, more scared than I can ever imagine being in any normal circumstance. Eventually, I would manage to get myself back to sleep by humming or listening to the TV or writing things in my head. That happened a few times, all pretty much the same, then it just didn't happen again so I forgot about it. Until last night. Then it happened again.

I woke up at about 4am doing the same crying thing. The last time, I told mum about it the next day and she said if it happened again to wake her up, so this time I went to her. It was weird. I'm fully awake and it's not a nightmare or anything like that. There's no real basis for my fear. I know, even as I'm crying uncontrollably, that there's nothing to fear but I'm still terrified. As long as I can keep my mind occupied with something, I can keep the fear at bay, but one moment of silence or not thinking in words and I'm back in the fear. I told you I'm going crazy!

Mum said today that she thinks it was some kind of panic attack or something like that so she went to see the chemo team today at work. The nurse she spoke to said that it isn't unheard of and I've got an appointment with Dr B's registrar tomorrow. Hopefully, she'll be able to prevent it happening again. I'm actually afraid to go to sleep. All day, if I think about last night, I can feel the same fear in the back of my mind, even though I'm not actually afraid of anything. It's freaky. You're probably thinking that it's some kind of repressed fear about cancer and all that a-level psychology stuff but I don't think so. If I do say so myself, I'm a remarkably well-adjusted young lady(!) and I'm really okay with everything that's going on at the moment. Yes, sometimes it's scary but that's a fear I can understand and it doesn't make me want to rip my head off or start a crescendo of screachy crying! I'm hoping that it's some sort of weird chemo side effect, maybe a nice chemical imbalance that can be corrected by eating more chocolate.

Well, I think it's probably time I went to bed. I'm going to watch a film called Dragonheart, which is fantastic - a talking dragon, yay. But first, I must see about finding a tree to bark at.

Rach x

2007-07-01T14:42:00.000+01:00

I love cottage cheese with pineapple on Tuc biscuits. Hmmmm I could live off the stuff, and it looks like I may have to if I want to get back to my former size. Damn steroids. Note: Me saying that I've put on weight DOES NOT give you the right to tell me I'm getting fat. Only somebody truly stupid or insensitive would do that.

It's been raining like crazy the last few days and we had a nice, though brief, storm today. I was feeling a bit crappy so I put on a dress and my red spotty wellies and went for a play on the trampoline. I got soaked again but it was worth it. 'Live life to the full' is my new motto and it seems to include a lot of getting wet so far. Fun.

I finally managed to watch one of the BBC's Seven Ages of Rock programmes the other day. It was about Nirvana and REM and that sort of music... made me want to start listening to it again so I've dug out some old CDs that I haven't listened to properly for years. I've also started listening to the Pixies, who I'm ashamed to admit that I've never given a chance before. I'm very much liking them so far. It seems to fit in well with the joint/bone pains I'm having this week.

Talking of joint pains, I think I'll be going to my appointment with Dr B tomorrow. He said to make it and then just cancel if my breathing got better. I don't think it's any worse but it's not any better either so I'd better go. At least I don't think it's PCP since I don't have a temperature. That means it could be the bleomycin causing lung damage (yay) or maybe just another innocent little infection. I don't really know. What I do know is that I do not want steroids! I hate thinking about breathing - it makes me breathe funny! That's why I'm not 100% if it's worse or better or the same because whenever I think about it, it makes me breathe different anyway. Duh. Better see what Dr B says.

Owwww I have a stabbing pain in my ribs. Oww owww OWWW. I'm sure rib pain was not what the Pixies were referring to in Gouge Away but it does feel like somebody is gouging at me with something quite sharp and in the most unpleasant places. The guitar is appropriate too. Ouch.

Rach x

2007-06-26T18:27:00.000+01:00

Why is it so hard to breathe normally when a doctor wants to listen to my chest? Breathing is a normal thing to do, I do it all the time, but as soon as a doctor puts a stethoscope anywhere near me, it becomes to most difficult thing in the world! I suppose it's cos they want you to breathe normally but loudly, and I hate loud breathers so I try not to do it. Anyway, that's besides the point. What I'm meant to be writing is that I've been feeling a bit breathless for the last week or so. I had a chest xray yesterday, which Dr B thinks looks normal but it hadn't been reported on by the radiographers when he looked at it, so it wasn't the true expert's opinion. Dr B listened to my chest and said it sounded fine, but then went on to say that I definitely am breathless (I'm not just imagining it, which was a possibility that was lurking in the back of my mind!) and that it's probably due to either the bleomycin (the B part of my ABVD chemo) causing lung damage, or PCP (pneumocystis pneumonia, I think), which is the kind of thing you can get when you're immunocompromised, which I am because of the chemo. So, neither of those is a particularly attractive option. I have another appointment with Dr B on Monday to see how it's going and I've been told to watch my temperature because PCP would make it run high.

Although lung damage isn't great, I think I'd rather it was the bleomycin causing the problem than PCP. If it was the bleo, they'd probably just take it out of my chemo cocktail or otherwise tweak my drugs to sort it out, but PCP can be really serious and would probably mean time in hospital, which I am not prepared to do! No thanks.

Apart from that, chemo went fine yesterday. My bloods were fine - Hb: 12.0 (11.5-16.5); WBC: 6.8 (4-11); Plts: 285 (150-440); Neutrophils: 3.13 (2.0-7.5). Numbers in brackets are the normal ranges. To be perfectly honest, I would've expected the WBC and neutrophils to be higher because of the daily stabbings for six days to raise them, but it just goes to show that I definitely wouldn't have been able to have chemo this week without the jabs so a little pain equals a lot of gain, if it means this chemo crap can be over quicker.

I was at the hospital for a bit longer than usual, with having the chest xray and seeing Dr B before chemo. Then a poor little old man got some bad news and crashed on the ward so all the nurses had to do a mad dash to sort him out, which delayed chemo for everybody. Not that I'm complaining about that. I had the misfortune to be standing at the crossroads between the nurses' office, the chemo unit and the ward when the alarm went off and all the nurses went flying. It was just a matter of standing still and making myself as small as possible to let them get past. It was really weird. I'd never even met the guy and he looked really old but as I was walking back to the waiting room I had to try my hardest not to cry for him. Poor man. I think he was okay later but it was still sad. Normally, the really sick people are kept on the ward and the okay-ish people stick to the day unit so we don't see much of each other. It really brought it home.

Anyway, apart from the breathlessness and feeling a bit funny in the tummy, I'm doing okay so far. Admittedly, I'm only just about to get dressed at ten to seven in the evening, but I am going out to the quiz at work so I can't be feeling that bad. I think I may have to tell Quiz Master Andy to scrap the sport and news questions and give a chemo round - I'd be okay at that!

Rach x

Feeling better...

2007-06-23T18:15:00.001+01:00

Why oh why do I let my room get so messy that I have to spend an entire day tidying it every few months? I'm supposed to be a grown up now, I'm supposed to be past the age of throwing everything in a big pile on my floor until it takes over the whole room and I'm forced to clear it. I'm just about half way through the current tidy-up. It's that awful stage where it looks worse than when you started and you just want to kick it all back into a pile and give up. I just have too much stuff! I can't even push the mess under the bed because every last inch of space in my room is packed with boxes and boxes of stuff and under there is no exception. And no, it's not stuff that can be thrown away, it's all DVDs and photos and other exciting things.

At least I'm feeling better and have been for the last few days. Unfortunately, it's chemo again on Monday, with the added bonus of a chest x-ray to see why I'm breathless sometimes. Just going upstairs leaves me out of puff, which it really shouldn't. I'm hoping that they just tell me I'm hopelessly unfit and should do some exercise. I don't want to think about what else it could be, since the chemo is supposed to be shrinking the lump in my chest and I don't fancy any chemo-induced lung damage. No thanks! I have to be there at 0900 for the x-ray, which means leaving home at 0820 - eek! At least having the actual x-ray is quite fun - they're always really nice and tell me I'm tiny, which is a great compliment! I love them! Then at 0945, I have an appointment with Dr B and chemo at 1030. Hopefully, I'll be home by early afternoon, depending on how busy it is.

Tomorrow, weather permitting, should be a good day out. Dr M (God) has organised a doctors vs management cricket match at a local cricket club to raise money for Rosemere. It sounds like it'll be quite a big event so we're going to cheer the doctors on. Pray for sunshine!

Well, that's all from me for now. If you're into the whole positive vibes thing, you might want to send some up to Wullie in Scotland, who's getting ready for a stem cell transplant to kick his Hodgkin's bottom once and for all. Everytime I feel down and I post a grumpy blog, people like Wullie and his wife Veronica leave me a message that makes me feel better, so they deserve all the positive thoughts you can spare.

Toodles for now.

Rach x

Bad tempered...

2007-06-17T14:41:00.000+01:00

What a week. It's been bloody awful, the worst since I started with all this rubbish. I was fine on Monday and Tuesday but by Wednesday I was in the worst mood ever. My joint pains were starting to kick in and on Thursday I started my daily injections of some nasty stingy stuff that is supposed to rally the white blood cell troops. I have to have one injection a day for six days, starting on the fourth day, with chemo being day one. The actual injections aren't that bad (thank you Mum) but I was supposed to stop having any needles stuck in me after I got the picc line and it hasn't turned out like that, so I'm in a bit of a strop about it to be honest. Apart from that, I've been feeling like absolute shit. The joint pains are quite bad, though the painkillers do help, and I'm so so tired. I haven't actually been dressed since Tuesday (though I have changed my pyjamas so I'm not stinky) and I'm not intending to get up today either. I figure that I'm so bad tempered and tearful for no reason that I'm probably just best staying in bed until I feel more human. Sorry to anybody who's sent me messages that I haven't replied to. I will (probably) reply when I come out of hibernation.

One thing this has made me realise is how fantastic a lady my grandma was. She had chemo pretty much constantly for at least four years and I can't cope well with just a few months. Grandma had to deal with a lot of cancer symptoms as well, which I'm lucky enough to have avoided. I don't know how she did it, and if I could talk to her now I'd definitely ask for some hot tips! Maybe she knew something I don't, or maybe she was just really strong. Whatever it was, I would never have appreciated her strength like I do now if I hadn't had this experience, so that's one positive thing to come out of it.

Rach x

2007-06-12T16:05:00.000+01:00

Feeling okay today, just a bit tired so far and my taste buds seem to have up and died on me already so everything tastes like cack. Apart from that, life is good.

Chemo went well yesterday, apart from the news that since I've been too neutropenic for chemo twice now, I have to have injections to prevent it on days 4-9 after each chemo. Yuk. At least Mum can do it at home.

I went to see my GP this morning and she confirmed, yet again, that she is a fantastic lady. She always seems happy to just sit and talk, no matter how late she's running, and she's so understanding and so obviously wants to help. I explained about Dr B's evil refusal to prescribe me painkillers to help with the joint pains so that I can sleep, in turn preventing the migraines, and she was really good about it. She looked up all the drugs in my chemo cocktail and couldn't find any mention of joint pains as a side effect, so I was a bit worried at first that she wouldn't want to give me anything. But then she said that just because it hasn't been written about doesn't mean I wasn't feeling it and asked if some stronger anti-inflammatories would be okay. I've been taking brufen for it so far and they've taken the edge off but not worked fully, but the ones she's given me are stronger and only need to be taken twice a day. I can still take paracetamol with them too, and they should help with migraines if I get any, so I'm happy! Woohoo, drugs! On the down side, the price of prescriptions seems to go up and up... £6.85 now. Oh well, it's a small price to pay for my sanity.

I'm going to the quiz at work tonight. I didn't go last week cos I was very neutropenic and it didn't seem worth the risk. But now I'm fine so I'm going. Even if some evil question-maker-upper has assured me that there will be forty questions on sport. I have threatened violence!

Think I will go and do some bouncing on the trampoline now. I have on a nice full skirt so it should fly around me nicely!

Rach x

P.S. My blood counts were as follows yesterday: Hb: 12.3 (11.5-16.5) ; WBC: 9.3 (4-11); Plts: 369 (150-440); Neutrophils: 4.89 (2.0-7.5). Numbers in brackets are the normal ranges.

Life can be AMAZING!

2007-06-11T17:53:00.000+01:00

I had my chemo this morning so I was feeling super tired and, for want of a better word, bleurgh. I'd just made myself a milky coffee and was about to go back to my room when I heard that it had started to rain. The weather's been great over the last week and today was really hot and sticky. We'd had all the windows open so it was cool enough inside but it was still really muggy. So, I thought I'd go outside for a minute cos the rain was that kind where there aren't many drops but they're big cool ones that make the garden smell really nice and earthy.

I took my coffee out into the back garden and stood on a stepping stone on the bark area. Then the rain started getting heavier and it was a tad chilly. As I was about to go inside, I had a flash of inspiration. I put my coffee down on the table and got on the trampoline, which is one of those big circular ones. It was FANTASTIC! The rain kept getting heavier and heavier and I was there in a dress and barefoot, jumping as high as I could. I must've looked a right weirdo, out on my own with my dress soaked through and rain splashing up all around my legs. The rain was so heavy that my hair was dripping and water was streaming down my face so much that I couldn't see. From feeling quite crappy and miserable (Dawson's Creek didn't arrive today!), I went to feeling on top of the world. I don't know what the neighbours would've thought if they could see me and Em and Jen laughed at me, but I haven't felt so good in ages. So, the moral of the story is if you're feeling bleurgh, do something wacky, especially if it involves rain and trampolines!

Rach x

PANIC..... uh, okay, panic over...

2007-06-05T13:10:00.000+01:00

Argh, I just scared myself. Stupid girl. I have a habit of touching the scar on my neck / Meredith-the-now-seemingly-absent-lump. Well, a few minutes ago, I was sitting at my computer reading somebody's blog, just idly stroking the scar and thinking how nice it is to not be able to feel Meredith anymore. Then, PANIC, I felt a lump that I hadn't noticed before.

Horrific thoughts started leaping around my mind... I thought the chemo was getting rid of the cancer, Dr Biswas seemed happy last time I saw him, but now it's growing again? That isn't right, something is seriously wrong, the chemo has stopped working, the cancer is fighting back...

Then I realised that what I was feeling is actually my collar bone. I'd moved my hand a little further along than normal and had found the knobbly bit near the middle of my neck. Yep, a quick check confirmed that it's symmetrical to the other side. Phew. What an idiot.

In other news, the family should be home soon. Peace and quiet shattered! It will be nice to talk to somebody other than myself / Carnie the dog/ Lily the cat though. On Sunday, I actually went into work just to have somebody to talk to! Well, it's not quite as sad as that, I had some stuff to take in and I spent a while chatting but it did make me realise that I hadn't spoken to another human in a few days. Strange for me.

Rach x

Neutropenic again

2007-06-04T10:25:00.000+01:00

Grrr. It was supposed to be my fourth chemo session (part 2b) today but I'm neutropenic again so I couldn't have it. My neutrophil count is 0.11 (normal is 2.0-7.5), which is very low. I'll hopefully have it next week instead. It looks like I might have to have some nasty little jabs to keep my counts up. Not sure how many but some people have them every day for a week or so, some have less. Unfortunately, it doesn't go through the picc line, it goes into my stomach I think and it's something you're supposed to do yourself. Lovely. There's no chance that I'm stabbing myself... the sisters can have fun doing it. I'm sure they'll enjoy some sweet revenge for all the torment I put them through as children. Karma bites me on the bum yet again!

Well, every cloud has a silver lining. The weather is absolutely glorious and for a few days after chemo I burn too easily to even look outside. Now I have a week's break. I still have to wear a big hat (yay!) and cover up and put factor 1,000,000 sunscreen on but that's just my normal fair skin being awkward so I can at least go outside. Maybe some quality time with Carnie and Lily. I feel a day of snoozing on the trampoline coming on. They really should market trampolines as the comfiest place ever to lie. We've got quite a big one and it's the most fantastic place to just listen to the world go by (quite literally, seeing as there's a bloody great big dual carriageway behind the house).

Damn damn damn the neutropenia. I just remembered that I wanted to go to the quiz at work tomorrow but I'm not sure if I should go now. I'm not sure how likely it is that I could pick up an infection but I don't really want to risk it. Infections = pain or hospital, and I'm not keen on either. Sigh.

Rach x

Slight overreaction?

2007-05-30T21:06:00.000+01:00

No, I didn't overreact, it was a misunderstanding! After my slightly ranty blog of yesterday about being asked to clear out my locker at work, it turns out that everybody has been asked to clear theirs out. Nobody has their own locker anymore, which sucks but it isn't directed at me specifically. Whoops.

Just been down to Next and bought a new pair of jeans and a few tops. It was either that or do some washing, which I object to doing because I haven't run out of clean socks and knickers yet. Give me a week and then I'll wash everything in one big washing extravaganza. I should really just bite the bullet and wash things, especially since I haven't been paid for this month and I don't know when I will be, but I did need some new jeans anyway. I can't, for shame, wear the same jeans next time I go to the hospital. They'll think I'm a skank who only has one pair (which I don't - I have lots of pairs of the same jeans, don't ask). Hmmm, I wonder if it's good manners to wear jeans when you go to see your oncologist? Aren't you supposed to show your respect by wearing dressy up clothes? Mum always dresses nicely to see any big-wiggy doctor types. Oh well, it's either jeans or pyjamas for me at the moment and I think pyjamas would be a bit too informal even for me.

Wow, I write such a lot of crap in here!

Rach x

Disclaimer

2007-05-29T21:22:00.001+01:00

Just to clarify things for anybody reading... this blog is my journal (see, it says it at the top - 'my journal as I undergo treatment for Hodgkin's Lymphoma'). It's a diary, where I write down all the crap in my head. Random ideas, fleeting bitter and twisted thoughts, bitching sessions. All is included. I don't have a private journal somewhere else. This is it and anybody can read it. Maybe that's stupid, but here I make my grand disclaimer. Just because it says something here, it doesn't mean that I always think that, or that that's my considered opinion on the matter. I write things as they happen and as I feel them. Then I contradict myself another day. So, if you read here that I hate people with arms and I'm quitting my job to join the circus, it might not actually be true. Just so you know.

Now, anybody who's been thinking, 'ooooh, you shouldn't have written that, what if your boss reads it?' or 'what if so-and-so sees what you've said about them?' you can ooh and ahh all you like, but I'm safe and happy in the knowledge that you have been warned. These are my private thoughts and you're very welcome to read them, but only on the condition that if anything you read happens to offend you, you can't complain or use it against me. If you can't agree to that, just don't read any more. Simple. Oh, and if you feel I've complained about you or upset you or insulted you or something, another rule is that you can't talk to me about it unless I bring it up first. Come on, you're reading my diary here!

Back to business. I had another migraine overnight. Not fun. Then had to get up at 0800 to see Dr B at 0900. Very short appointment, just checking in really. He didn't/can't give me painkillers for the migraines; he said I should see my GP who will know more about migraines, though he did say that they're probably caused by the chemo. Fair enough.

Then I went to work to say hello and drop off some stuff. Had a nice coffee and a good gossip with Sarah and spoke to a couple of others. I was a bit taken aback to be asked to clear out my locker. I know they probably just need the space and it's not as if I was using it but it did knock me for six. I'd never even thought that my locker wouldn't be my locker anymore. I know the world manages to carry on turning without me and people just need to get on with things but I feel like I'm only off work for a short time and I can't really explain it but that hurts! It's not rational but still, it's my locker! I would claim squatter's rights but somebody had already cleared it out for me. I was evicted from my locker. This is a sad day for locker-tenants everywhere. Now it feels all very final and like I won't be going back. Maybe it's an omen. The Omen of the Locker. Spooky.

Rach x

It's not chemo, it's LEMMINGS!!!

2007-05-28T21:56:00.000+01:00

I've been playing Lemmings on the PSP recently; it's very retro or something like that, which makes it cool. But look what I spotted on the internet when I was looking for a nice picture to steal for on here... look at the warning sign...

It's not the chemo, it's lemmings that's making me have 'chemo brain', lose my hair and not get enough sleep. Forget toxic chemicals being pushed around my body, it's the bloody lemmings! Naughty little critters. Somebody should have a stern word with them.

I haven't felt too bad today. I actually managed to stir my stumps enough to get dressed (round of applause please) and take the dog for a nice stroll. We went down the tram road and round the back of The Oaks, if that means anything to you. The dog was tired by the end of it and I was knackered but we had a nice time. Fresh air is good. I had a bit of a rest when we got back and then I had fun hacking the ice out of the back of the fridge so Mum had somewhere to put the shopping. Later, I even helped tidy up the house (a bit) and assisted in the rescue of a very cute baby bird (we snatched it from the jaws of death - Lily tried to eat it, bad cat).

Tomorrow, it's a horrible early start for me. I have an appointment to see Dr B at 0900 - eek! I don't think it's for anything in particular; he just likes to check up every few weeks. I'm going to ask for painkillers. Apart from that, I don't think I have anything to tell or ask him, apart from that Meredith is almost undetectable now! Woohoo! Obviously, the chemo is having some effect if a lump that was sticking out quite a lot above my collar bone is now pretty much gone. I can't tell anything about the other two lumps cos I could never see the other one on my collar bone and the other is hidden in my chest, but I haven't been coughing at all. I never really thought I did cough before, but Dr M (the God of all things chesty) was very surprised when I said I didn't cough and thinking back, I did, so I lied. I had sort of a dry annoying little cough that wasn't doing anything but was annoying and I did get breathless easily, though I just thought it was because I was unfit. Now, no more coughing but I haven't really tested the breathlessness. I'm still unfit!

Think I'm going into work after my appointment tomorrow. It's on the way back from the hospital anyway and I want to catch up on gossip and have a nosy. I have some posters and stuff to take in too. I'm so glad I can still be useful. I hate not being able to work. And the posters are very pretty.

Hmm, Mum has a friend round and I'm wondering if they'll notice if I sneak into the kitchen and eat six custard slices. It's probably worth the risk of being discovered. But is it worth the calories? Hell yeah... I had a salad for my dinner. What's a few thousand extra calories between friends?!

Rach x

P.S. Emma pointed out that, ages ago, I referred to 'old lady problems' caused by chemo. She said it made me sound like I'm incontinent. So, for anybody who has been thinking I'm incontinent, I HAVE FULL CONTROL OVER MY BLADDER. By 'old lady problems' I meant digestive problems, which is often a major side-effect of ABVD chemotherapy. In case you're interested, after my first chemo session I didn't poo for a week, but I've been fine ever since. How's that for too much information?

Migraines... don't you just love 'em?

2007-05-27T12:24:00.000+01:00

I'm never going to say anything as stupid as 'I feel okay this time' again! I felt fine until Wednesday, when I had a migraine. Then I had a migraine on Thursday. And Friday. And over night last night. I'm not happy! You'd think the whole cancer/chemo thing would be enough without my head deciding that it needs to explode. I don't know if it's connected to the chemo. Normally, I get migraines when I'm stressed or tired but I haven't felt particularly stressed or tired. I have had a bit of joint pain - maybe it's been stopping me sleeping properly. Whatever it is, I'm seeing Dr B on Tuesday for a checkup so I'm going to ask if he can give me painkillers or something to make me sleep. At the moment, I feel like I'm gobbling ibuprofen and paracetamol like sweeties. I'm not really sure if that's allowed. Nobody's told me I can't take normal painkillers anyway.

Emma's home from uni for summer. The house will never be quiet again! They're all going away to France for the rugby league match against Catalan Dragons next weekend. I hope they have a good time. Mum was going to cancel her ticket because it's the weekend before my chemo and they won't be back till after I've had it. Silly moo. I'll be fine on my own, especially now my car is nice and healthy again. I still get the feeling that she's going to leave me enough food for about a month and a list of people to call if I need anything, but I'll cope on my own for a few days!

Oooh I have pins and needles in my foot. Shouldn't sit on it when I type. Got to go hop around now.

Rach x

Hey you...

2007-05-22T23:06:00.000+01:00

If you're reading this, would you leave me a comment please? Pretty please? I look dead sad with no comments. Just say hello or something and I'll love you forever. If you're not reading this, it doesn't matter. I'm really doing this for myself. But if you're not reading this, you must be reading this because otherwise you wouldn't be here to read that you're not reading this. I'm confused now.

I'm feeling okay today. I don't seem as tired as I was for my last chemo. I actually woke up at 10.00 today. Maybe I'm just getting used to it. Maybe it's because I've had some work things and some rugby league things to do so it's made me get up and put my brain in gear. Whatever the reason, it's better.

Rach x

Three chemos down, five to go...

2007-05-21T21:21:00.000+01:00

Well, maybe only three chemos to go, that would be nice. Hopefully, I'll have a clean PET scan after my sixth chemo, then get assigned to the no more treatment group of the trial, then go home and have lots of drinkies.

It was okay today, though I did have to wait nearly two hours for my chemo. I think somebody in the pharmacy cocked up and didn't send all my drugs up so they couldn't start it. Pity nobody actually came to explain. If I hadn't gone and asked after the first hour, they would've left me in the dark for the full two hours, which is pretty bad. Last time, my bloods weren't right so we had to wait about an hour and Damon came out at least twice to explain and update us. This time it was a different nurse looking after me and she did zilch. Quite bad really. Before my next one, I'm ringing the unit to make sure my bloods are okay and that they have my drugs before I set off. I waited two hours today; they can wait fifteen minutes for me to get there. It doesn't seem like there's a very tight schedule for them anyway, since chemo can vary so much in length and mine has always been fairly quick so far.

I am extra tired now though. Waiting doesn't sound tiring but it is. You can't sleep cos you're in a weird place and they could come to get you at any minute, and if you stay away it makes you extra sleepy on top of the chemo-tiredness. Ahh well. I'll sleep well tonight.

Have I written about my weirdest side-effect? My stomach feels weird, a bit like being queasy but I don't feel sick. I can't really tell how it feels. I'm not sure if I'm hungry or full or just okay, so I just sort of guess how I should be feeling, which probably explains the weight gain!

I think somebody should start an awareness campaign that shows how people who have cancer really look. In films, they're always bald and thin with pale skin and a brave smile in the face of death. Well it's not like that at all. Most of the people I've seen at the hospital are older so probably started off weighing more, but I've not seen a skinny person yet. Maybe they're all hiding on the proper ward, but the majority of people aren't hospitalised and they're the people I see. They look normal. I've seen a few ladies wearing headscarves and a few old guys who were balding, but that might be their age. Most people are plump-ish with hair or a good wig. You wouldn't be able to tell them apart from the non-cancer people on the street.

I've chosen not to get a wig because they felt, to me, like wearing a dead cat on my head. And I'm not really into dead cats. Other people look fab in them but it wasn't for me. I have headscarves and hats... things that I suppose might mark me out as one of those 'brave cancer sufferers' like on TV. But I'm not skinny and I don't think I'm any paler than usual. I still have my hair, albeit shorter and I'm not sure for how long, and my eyelashes and eyebrows are still there, though I don't know how long they'll stick around either. I don't mind people knowing I have cancer; hey, I'd rather that than they just thought I was bald, but it just occured to me that if I stay the weight I am, or heaven forbid even put on weight, will people know I have cancer or will they just think I'm a fat baldilocks? TV is unfair on real people.

It worries me that if I go out places where people know I have cancer, if I look too happy or healthy, they won't think that what I have is a serious disease. It's common for people with Hodgkin's to be told that they have the 'good cancer'. Hell I'm even guilty of saying that to people when I explain what's wrong with me. It makes me feel better about giving them bad news. I don't want to worry people, and it is true that the survival rates for Hodgkin's are a lot better than some other cancers. But it's still cancer. Look on the internet. It's full of people who fought long and hard and still didn't make it. It's full of people who chemo can't help anymore and they're just being treated to prolong their life. They can't be cured. Alese Coco died a little while ago, after a hard battle against 'The Hodge' and she never gave up. She was just 23. She was a beautiful young lady with a lot ahead of her but Hodgkin's doesn't care that it's supposed to be the good cancer. It's still cancer.

People keep saying that I'm brave and I'm very chipper (my GP is ace enough to say chipper and sound cool) but I don't really know what they mean by that. I always thought that bravery is doing something scary that you could choose to run away from, like a firefighter going into a burning building. But with cancer, you don't really have a choice. It's do or die. And I'm 22 so dying isn't really an option. I have no choice but to do what the doctors tell me to do. I have no choice but to put my life on hold. And if I have to do it, there's no point moping around making myself and everyone around me miserable. There are times when I want to scream and shout because this is not bravery, I just don't have a choice. That's what pisses me off the most. If I chose this, although I can't imagine a scenario where I would have to do that, at least I would know that I'm having chemo and losing my hair and aching and exhausted because I chose it. There would be an element of control over it. But as it is, there's no control and no choice apart from how to react to the lack of choice. I've chosen to be chipper (can I pull off saying that?). I'm not brave. I'm just chipper.

Rach x

P.S. Today my blood counts were as follows: Hb: 11.3 (11.5-16.5); WBC: 3.9 (4-11); Plts: 295 (150-440); Neutrophils: 1.57 (2.0-7.5). Numbers in brackets are the normal ranges.

Big Weekend

2007-05-20T20:31:00.000+01:00

Oooh Radio 1's Big Weekend was great! Very tiring though. Nik and I only had tickets for Saturday but I would've been too tired to go today as well anyway.

Moor Park looked great and it was really well set up. The tents with the main stage and the in new music we trust stage were huge and amazing, there were loads of nice places to buy things, there was lots of good food and even the toilets were okay. I bought two hats. Very pretty.

The music was great. My favourite was Natasha Bedingfield - she was amazing. I'm now a big fan. We managed to get right to the front for a lot of the acts and we sat down at the back with food for the rest, so we were happy. My second faves were Pigeon Detectives (I think that's what they were called). I'd never heard of them so I wasn't expecting much but they were really good. I really did want to go again today but, like I said, I would've been too tired. I went to bed early last night and didn't wake up till this afternoon. Lots of fresh air and walking around is exhausting!

At least I had a good weekend before chemo tomorrow. I think I should be okay to have it as planned this time. Last time, when I was neutropenic, I had quite a noticeable rise in my temperature for a few days beforehand; nothing to bother the hospital about but I was warmer than usual. This time, my temperature is normal. Hopefully, it's something to do with WBCs and infections. That's my very unscientific theory anyway.

Rach x

Macs in packs and cags in bags

2007-05-18T23:23:00.000+01:00

Right, from now on I'm not going to say if I'm tired, I'm just going to tell you if I'm not tired. Otherwise, every blog will start with 'I'm so tired' and that's boring.

I went shopping with Nik today and bought a 'mac in a pack' from the camping shop. But this is no ordinary mac... it's purple and flowery and it's a proper lady coat shape. It's beautiful. Nik bought a 'cag in a bag', which is quite cool too. We thought we'd better get waterproofs for tomorrow - we have tickets to Radio One's Big Weekend in our wonderful town of Preston. It's quite exciting! Hopefully, the weather won't be too bad, but we now have cool coats and wellies so we'll be fine even if it's awful. And we can use our coats for camping next year, too. I'm so disappointed that we can't go camping this year (bastarding cancer ruins everything) but I'll get a head start on the planning for next year, hehe.

I put the new battery on my car today so she now starts like a dream. I need to take her to Steve's tomorrow though; one of the battery clamps is a bit broken and no, I didn't break it, it was already like that. Once that's started, I'm going to drive everywhere! I've missed being able to go out whenever I want. It's nice being driven around by other people, especially when I don't know how well I'll be feeling from one minute to the next, but it does mean I can't go anywhere on my own. Now, I'm going out. I don't know where, but out. I'll probably end up at work cos I haven't seen Michelle or Colette for ages and I'm missing out on gossip!

I spoke to Dave on the phone for quite a while today. It was nice just to talk like normal people. There was a bit of a hairy stop being so mean / you don't understand me moment but we didn't actually end up shouting down the phone so it was okay. Maybe being friends is right for us. Well, it's either that or one of us will end up sticking a knife in the other so it's probably the safer option.

Thank you to Amy, Ben and Paul who've all told me music to try out... My musical education will start next week.

Rach x

Mummy has a new car

2007-05-16T22:20:00.000+01:00

Today I had a migraine because I was so tired but I still went with Mum and Jennie to pick up Mum's new car. It's a steely blue Alfa Romeo 147 and I rather like it. Not as much as Tessy though of course. I've bought her a new battery, which I will put in tomorrow, so then I'll be mobile again. Yay!

I don't know what was up with me last night. I've just read my last blog and it sounds like I was drunk but I wasn't. It was really weird. Oh well. I still have lots of plans and I still can't wait to get back to my life. I can't wait to stop being so tired and get on with things. I want my future now!

Did I say that a little girl from one of my book groups sent me a get well card? It's really sweet, from her and her family. People have been so nice. I'm missing my reading groups as much as I'm missing work. I'm going to try to go along for the next month's meetings, just to say hello. I'll take some chocolate too. Everybody loves chocolate. I'm not sure how it'll fit around my chemo sessions but chemo is on Mondays so I should be fine by the Friday/Saturday, whatever week it is.

Should go to bed now.

Nighty nighty, pyjama pyjama.

Rach x

Quizzage and workiness - I'm BUZZING!

2007-05-16T00:31:00.000+01:00

You need to read this at high speed. Like when you record your voice and play it back twice as fast as normal and you go all squeeky. It's fast and funny!

I am crap at quizzes. We went to the work quiz tonight and I got the answers to about three questions. I did get the answer right to a logic puzzle though, which I thought was very impressive, especially with the chemo brain (if you haven't noticed, chemo affects brain power, concentration and memory). Dave G helped us. In fact, we definitely would've come last if he hadn't so thank you Dave! Andy is rude. He refuses to let me cheat. And I'm sure he makes the questions extra sporty when he knows I'll be there. He knows I can't do them. Rude rude rude.

I had a bit of a nosy round at what's been going on. Lots of sections are having a bit of a move around so I'll have to get used to that when I go back. I have to say I was surprised that there aren't more events posters and stuff up in the kids' section. I s'pose that's not my concern now though. Shame.

I can't wait to get back to work and stuff. Of course I want all the chemo stuff over because it's not nice, but the main thing is that I want to get back to my life. At first, it seemed like if I was going to get cancer it was at an okay time because nothing special was happening at work. In fact, I'd just not got a job I really really wanted so it actually made it easier cos I just didn't go back. But now, I'm itching to get back to stuff. Okay so I didn't get the job. That's their loss. And if you're reading this, boss-men, you have no idea what you're missing out on. I have an extra super killer pitch buzzing around in my head and a million fantastic ideas that should be happening now but I'm holding them hostage. My thoughts are my own. All will be revealed when the time is right and when I'm earning lots of lovely money.

Anyway, now I just want to get back to work and see what's going to happen there, whether I'll like not being on the kids' section, whether I'll want to move to another store where I can work with kids, whether I'll try voluntary work with children and whether that can take me anywhere interesting career-wise.

Not very long ago (up until yesterday in fact) I was quite depressed that I hadn't got the job I wanted. I thought it was a reflection of the person I am. I thought that my work hadn't been up-to-scratch. I thought it meant that other people were better than me. Now I'm all happy jolly and enthusiastic again. If I can't do the job I want where I work now, that doesn't mean I can't do the job at all. There are a million other places that I can do the same thing. There are even (gasp as I say this) better places to do the same thing, or even a better thing. Who ever knew?! Don't get me wrong, I loved my job and it seemed to tick a lot of the boxes, but there are other boxes and even some blank lines for me to write my own stuff on. Okay, getting a bit bizarre here. Chemo brain anybody? Fried up with some chopped liver?

I'm obviously on a bit of a high from something here (I haven't taken anything that I know of, honest) but I'm really very excited at the thought of going back to work. I'm getting twitchy just thinking about it. I want the answers now. I want to know what it's going to be like and I want to start trying to be good at it now now NOW. Like I said, I have a killer pitch buzzing around in my head. It was initially geared at getting a certain ring-wearing children's author and a rather Hogwarty lady into the store (and it sooooooooo would've worked, believe me) but now I'm thinking that the same idea can be applied to any very popular author, or really anybody very famous. Initially, I came up with my plans because I had a certain boss's word that I could have baby wolves in store if I could get both of the children's authors in, but now I'm not sure that I want to use my idea for that. It's such a perfect idea that maybe I should aim higher. Royalty perhaps? Maybe a one-off performance by the Red Hot Chili Peppers? Hmmmmmm... Anthony Kiedis, naked.... well, probably not naked. Thoughts out of the gutter Rachel! Last night, I couldn't get to sleep because the pitch was screaming at me. I had to get up and write it all down before I could get any rest at all. And even then, my dreams were of a packed theatre, full of children and orange squash and famous people.

I'm beginning to wonder if I've eaten something by accident. Did anybody leave some funny drugs around? My head is buzzing. Well it makes a change to being fed up and tired. I have energy! There's a moth under a glass on my desk. I should probably let it go outside. Nasty powdery thing. It fluttered at me. Death to the moth.

I feel drunk. Not the sleepy stage of drunk, but the bit where you go to the loo and sit there just giggling to yourself because you've just realised you're drunk. It's a great feeling. I think I'll probably regret writing all this crap in the morning when I read it as a 'sober' person. Though I really haven't had anything to drink at all. I'm just excited for no reason. Tomorrow, I'm going to regret this because I've been honest about what I think about work and because I think my bitterness has probably shown and because maybe people will think badly of me. I don't care right now. My nose is cold.

Freedom to the moth.

Rach x

Oh, I nearly forgot. Does anybody want to get married? I really really want to get married. In about a year's time. And then I want a nice house and some children. I don't need a lot of money and I'm happy to work (though part-time work and full-time mum would be better). If you know of anybody who's a nice, normal guy with normal ideas and expectations who's ready to settle down, please let me know. I'm not fussy about looks or brains. A good heart is all I ask. How romantic.

Waffle

2007-05-13T23:30:00.000+01:00

I am so so tired. I have literally been sleeping for about 20 hours a day and I'm still absolutely knackered. My brain has stopped working too. I can concentrate for about fifteen minutes and then I'm off for a lie down. Not much new then.

Chemo side effects have been easier so far this time. I've slept a lot more but the joint pains have been less troublesome (probably due to the Rhus Tox) and I've not had the same old lady problems. Now all I've got to hope for is that my good white blood cells haven't taken such a battering this time and I won't get any infections.

Also, if you believe in God (which I don't but never mind that small fact) please pray for me. In the two weeks after my last chemo, I gained FIVE POUNDS in weight. That's the weight of a small-ish baby. Please pray that I can sail through chemo without becoming a fat blimp. I always thought chemo made you look all thin and sickly but apparently not in my case. Five pounds indeed. Luckily, I've just about lost it again. Maybe it's not a good idea to live off Danish pastries and chocolate milk. Anyway, pray for my waistline please. I refuse to be a fat baldilocks.

Thank you to everybody from work for the card. I've never seen a turtle play frisbee before. I'll hopefully be in some time over the next week to bring some cookies so you don't forget me. I need to meet the new people too. Otherwise, I'll come back when I'm better and nobody will have a clue who I am.

The Teenage Reading Group from work sent me a lovely card too; it was really kind of them. They were my first reading group but I still didn't expect to miss it so much. Maybe when I'm back out and about properly, I'll look into what libraries do about children's book groups and see if they need volunteers. Stuff like that was always the best part of my job but it isn't my job anymore, so maybe I can make it into my 'good cause'. I always like to have a voluntary project and promoting literacy is a great one to choose.

Hmm, yet again I have descended into waffling.

Good nighty.

Rach x

I smell nice

2007-05-10T22:12:00.000+01:00

It's so nice to smell good again. Don't get the wrong idea, I've not been stinky recently (not that anybody's told me anyway) but I've been avoiding showers because I tend to get a good few handfuls of hair everywhere except where it should be, which is very depressing. So, I've just been washing but that leaves my hair smelling of hair instead of my normal lovely lovely Herbal Essences. I have read that when your hair is falling out, you should use a gentle baby shampoo but I tried that and it just left my hair smelling wrong and it got in knots so I had to comb it hard - not good! So, I had a lovely bath this evening and I'm now back to Herbal Essences hair. It's truly one of my favourite smells in the world, and if it's bad for my chemo hair, tough! If it's gonna fall out, it's gonna fall out smelling good. And now it's been washed and gently styled, I look like a person who chose to cut her hair, instead of a psycho who hacked it off herself. So all is good for now.

Still no real chemo side-effects except for feeling very tired, but I can cope with naps every few hours. They do say that the side-effects are cumulative, so by the end of my treatment they'll be worse, but for now it's easy enough. At least I've started off okay, so I might never get as bad as some people seem to start off. A very lovely lady that Mum works with has given me some stronger Rhus Tox for if I get joint pains again, and she's also recommended some Bach Flower Rescue Remedy stuff, which I think I'll get tomorrow. Some people say herbal and homeopathic type stuff is all rubbish but I don't care. It works for me and if it's all psychosomatic, what difference does it make? I get to feel better. I'm gradually adding to my all-natural range of things to use... distilled witch hazel for brusies and skin cleanser and cuts and rashes and itches and burns; lavender in the cleanser and for brusies and for getting rid of nausea and migraines; Rhus Tox for muscle and joint pains and headache and rashes; and hopefully Bach Flower Remedies for a whole load of things both chemo and non-chemo related. I like things that aren't drugs, especially while I'm being pumped full of toxic drugs for cancer.

Well, nothing exciting has happened and I'm just rambling (again) so I think I'll go for a lie down.

Toodles.

Rach x

New hairstyle (well, not really a style as such!)

2007-05-10T00:14:00.000+01:00

I said I'd post a pic of my new hair so here it is! It's very messy but it's easier to deal with the malting when it's short.

Note how unbelievably happy I look.

Rach x

Poor Tessy

2007-05-09T12:55:00.000+01:00

My car is dead. Poor poor Tessy. Technically, I don't actually think she's dead dead. It's more that, after not being driven for over a month, her battery is dead. So dead that the immobiliser doesn't even beep.

So I can't go anywhere even if I did want to, not until somebody's home to give me a jump start, which is a right pain! The only time I needed my car, I couldn't use it. Yesterday, Nik's exhaust started blowing and it turned out that the bracket holding the very end of the back box had broken. We wired it back up so she could take it to Steve, our friendly mechanic, today. She got about three hundred yards down the road and the bracket at the other end broke! Typical. So there she was, stuck, and here I am at home, stuck. (Mum's at work.) If we'd been together it would have been fine. She could've left her car to be towed and I could've taken her to work. As it was, Nik rang Steve and he said just to take the whole back box off and drive it in. Well, that's easier said than done! A pair of scissors, some pliers, two friendly passers by, some very dirty hands, bruised knees and half an hour later, the back box is now in Nik's boot and she's driven to Steve's, albeit sounding like a boy racer in her very loud Susie. Hooray!

Now onto chemo stuff. I'm feeling fine so far. Last night, I took one of my 'take them if you need them' anti-sickness tablets cos I was feeling a bit sicky, but that's nothing very exciting. I remembered to take my 'morning after but not the sex kind' tablet and my steroid tablets today, too. Apart from that, I have nothing to report yet and hopefully I won't have anything ever. So this could be a very dull blog, as usual.

I feel funny with short hair. It's so, well, short. And it's not even properly short by anybody else's standards, but I'm used to hair that's at least shoulder-lenghth so I feel all swishy. I'm wearing a headscarf or hat all the time now. I don't need to yet but I may as well get used to it and it means I need to wash/comb my hair less so less falls out and it contains the ones that do want to fall out all over my back to make me look like a yetti.

Yesterday evening, I spent ages redoing my MySpace to match the colours of my blog and they're both accessible from www.moohouse.co.uk now. It's all very pretty and purple.

I'll probably write more later, sorry. I like blogging!

Rach x

Choppy chop CHOPPED

2007-05-08T23:23:00.000+01:00

I cut off my hair! It was very exciting. I put it in a ponytail and hacked it off. If you ever want to cut your own hair, by the way, I DO NOT recommend cutting it like that. You end up with a messy Pob! Luckily, Emma is home at the moment so she tidied it up for me, not that it really matters but it really was bad. Now I have hair that's roughly the same length all round. If I was wearing a shirt with a collar, it would just sit on the collar. I quite like the length actually, though I will not be turning under the ends - that would be too year seven giraffe neck-ish. Argh. I will get a photo tomorrow so you can laugh at me.

I had my chemo as planned today. If you're interested, before my first chemo session, my blood count was as follows:

Hb: 12.6 (11.5-16.5)
WBC: 13.0 (4-11)
Plts: 329 (150-440)
Neutrophils: 9.74 (2.0-7.5)

My white blood cells were raised (neutrophils were too - they're a type of WBC and what they check to see if chemo can go ahead).

Last Monday, my neutrophils were only 0.25 (2.0-7.5) so I couldn't have my chemo.

My blood count was as follows before my chemo today:

Hb: 12.3 (11.5-16.5)
WBC: 7.2 (4-11)
Plts: 365 (150-440)
Neutrophils: 3.12 (2.0-7.5)

Numbers in brackets are the normal ranges. Hb = haemoglobin; WBC = white blood cells; Plts = platelets.

The chemo was okay today. It was really busy because of the bank holiday yesterday and I was the youngest there by about 50 years. Seriously, I think there were about 2 other people there who didn't have a wheelchair or a walking stick. It went really quickly and it was easy because I have Pip so no more needles. I didn't have any side-effects straight after and I'm just feeling really tired now, but it is quite late so that's okay.

Well, I think I'll go and watch some cookery TV now, or maybe carry on listening to Bloc Party's last album called Silent Alarm. I started listening to it during chemo today and I'm loving it so far. It does say the F-word though.

Rach x

Choppy chop chop

2007-05-08T12:31:00.001+01:00

My hair is falling out by the handful and it's quite long at the moment so I'm permanently covered in long blonde hairs, even when I tie it back in a ponytail and wear a headscarf. Eventually, and quite soon, I'm going to have to shave it off because I don't want to end up like some sad old man with a comb over, but I'm not ready for that yet! Today, I'm going to cut my own hair. I've always wondered how easy it would be so now I get to find out, and Emma can tidy up if I make a mess of it. I think I'll cut it so that it's just long enough to go in a ponytail. It should look better shorter and the hairs that fall out won't be so peskily long.

Well, now the vain part of my blog is over, just time to write that I'm hopefully having my second session of chemo today, after a week's delay because I was neutropenic. Fingers crossed. I have to be there for 1345 so I'm going to miss Neighbours. Oh dear.

I might write more later after my chemo. I'm sure somebody will annoy me so I'll need to vent.

Rach x

11.09pm, 2nd May (warning - icky photos)

2007-05-07T16:59:00.000+01:00

If you read my previous blog, you'll know that I had a picc line put in on Monday. Since I'm bored and I spend most of my time obsessing over my Hodgkin's, I thought I'd let you share in the joy a bit by posting some photos of Pip (the picc line). Don't look if you don't like the sight of things sticking out of skin! And don't worry, I don't really think that people are interested in seeing things like this, but, like I said, I'm bored.

This is how I came home from the hospital. Look, I'm bleeding. HELP! No really, that's just a little bit of blood (smaller than a 10p) from when it was first put in. I look like I'm properly ill now I have dressings. Wow. Get me a wheelchair somebody.

This one is how it looks when it's uncovered so it can be cleaned, which Mum did for me today. It was nice to be able to scratch my skin.

And this one is how it looks now. It doesn't need the gauze over the exit site anymore, so it's quite a bit smaller and waaaaay cooler to look at cos you can see where it comes out of my arm.

Well, that's the end of my PICCtures (haha, I'm so witty). I hope you enjoyed the show.

Rach x

3.02pm, 1st May

2007-05-07T16:57:00.000+01:00

Well the good news is that I feel fine, normal even. The bad news is that I feel fine because I couldn't have my chemo yesterday as planned.

Bit of a (dodgy) biology lesson for you:

When you have chemo, the idea is that it kills off rapidly dividing cells in your body, which means it gets the cancer. Unfortunately, you can't just target the bad cells - it also kills off good cells like blood cells. Every time you go for chemo, they do a blood test first to check that you have enough of the different types of blood cells to cope with the chemo. There's a kind of white blood cell called neutrophils and if you have too few of them, your body can't fight off infection and they won't do chemo because it would be too dangerous. If this happens, it's called being neutropenic.

I'm too neutropenic at the moment so they couldn't do my chemo yesterday. I'll go back next Tuesday to try again. Hopefully, by then my neutrophils should be up to an acceptable level. In the meantime, I just have to avoid people with bugs!

I did get my picc line put in yesterday so it wasn't a waste of time going to the hospital. I went in for 0900 and the nurse put emla cream on the inside of my elbow then left it to work for an hour. While I was waiting, I saw Dr Biswas just for a general checkup. He didn't have much idea why I'd had the joint pains but suggested that I reduce the dose of steroids for my next chemo, which suits me fine cos I didn't have much nausea anyway and they made my skin really bad.

MARK, if you're reading this, skip this paragraph. After that, I went back to get my picc line put in. I was expecting it to be a bit unpleasant but it was fine. Catherine, the Nurse Specialist, is fantastic at all things needley so you hardly feel it when she takes blood, and that's all I really felt. I now have a thing like a cannula in my arm with a dangly bit attached, but the actual thing goes all the way up my arm and into my chest, inside a vein. Then I had to go for an xray to check it was in the right place. That was fairly quick and I like going for xrays cos they're nice down there - they always tell me I'm tiny and they said this time that I'm too small for the adult shield thing they use so I had a children's one, which was very flattering! Then it was back to the Ribblesdale unit to let them know the picc line was ok. Now I won't need any needles for blood tests or chemo cos it can all be done via the line. It's very useful having a mum who's a nurse. I need a dressing change on Wednesday and the line needs flushing out on the weeks when I don't have chemo. Normally, a district nurse would have to come out to do it all for me but mum can do it instead and she can also take my blood and drop it off when she goes to work on the Fridays before chemo, so I don't have to go in. Now that's what I call service!

I don't really have much else to say. I'm a bit pissed off that I couldn't have my chemo but a quiet little part of me is also quite glad, although I know I shouldn't be. I get to spend a week feeling fine, lying in the sun. And before any workie types start thinking that I should be back at work, I can't because I have no resistance to infection. So, the sun it is. It's a hard life.

Rach x

3.37pm, 27th April

2007-05-07T16:53:00.000+01:00

Normality returns! Woohoo! Yesterday, I felt like my old self again. Okay so that still means I'm really tired but I don't feel bad in any other way. So, for my first chemo - had it on Monday and felt a bit sicky but not too bad until Thursday, when I got horrible horrible joint pains until the next Tuesday, then felt generally a bit crappy until Wednesday. I get Thursday to Sunday feeling good, then it's back to start it all again on Monday! That doesn't sound like too many good days but I'm going to ask for some nice pain killers for next time so I hopefully won't get the joint pains and I'll eat better so I won't have the generally crappiness. Now that sounds like a better ratio of good days to bad days - feel crappy Monday to Wednesday, then fine until the next session. I can do that!

I don't really have much to say in this blog but I'm a bit bored. I should say some thank yous - even though the people I'm saying thank you to don't read this. Thank you to Caroline (Sarah's lovely daughter) who made me a beautiful card that really cheered me up when I was feeling horrible after my chemo. It now takes pride of place on my noticeboard. Thank you to Jane for the cute card and the regular entertaining emails and thank you to Bernadette who sent me a lovely pressie. Thanks to everybody who's sent good wishes via Nikki and people who're keeping me updated and laughing via myspace. And most of all, thank you to my fans, you, the little people... okay okay getting carried away with the speech now. But really, thank you, I appreciate it.

I'm tired now. May go for a little lie down. Mum made a good point yesterday. I was saying how I felt absolutely fine before all this started - I was happy and healthy and bright eyed and bushy tailed. I was just starting training for the Cancer Research Race for Life in May (how ironic but can't do that this year now) and everything they've done to diagnose me and make me better has hurt me and made me sick (biopsy, bone marrow, needles, chemo). It's just weird that I felt fine but to be really fine, they have to make me feel bad. Mum made a good point - maybe once this is all over and sorted, I'll realise that I've felt bad for a while. I'm always tired but I, and everybody else, just put that down to lazystudentitis. Does it make you feel guilty for calling me lazy, when really I have cancer?! Ha. That was mean of me. Anyway, I've felt tired and generally fed up for ages and ages... maybe once I have the all clear I'll be full of beans. Now that's something to look forward to!

To get all soppy and American for a bit, the main thing that is going to get me through all this shit is my family and wonderful friends. Being diagnosed with something like this really shows you who your friends are and how wonderful people can be. I've read lots of stories on the internet about how badly people have been treated but luckily I've had none of that. Some people have said stupid things, some very stupid things in fact (HINT: if someone tells you they have cancer and the treatment is going to be horrible, DON'T let the first thing you say be "does that mean you're going to be bald?"), but I know they've only said them because they didn't know what else to say and they're shocked.

The other thing that's going to get me through is my seething anger. Some people are horrible. My bastarding father for one. When I was being diagnosed, mum and dad were half way through the courts to find out if dad should still be paying maintenance for me like he agreed to do. Mum won by the way. I didn't tell him what was going on because I don't talk to him but my grandma did tell him so he knew. He didn't contact me when he found out because he was waiting to find out what the courts would say about money! What kind of twatbag puts off contacting his daughter about her health because of MONEY?! A week or so ago, ages after the court thing, I got a card from him saying that if I ever want to talk, he's only a phone call away. As if I'd want to talk to him about anything! What does he think I am? If I couldn't talk to my family or friends, does he really, honestly think I'd talk to him? Yeah, right.

Another person I'm angry at is my grandad. Every time mum talks to him about me, he cries down the phone. Okay maybe I'm being harsh when I say that that pisses me off but it's me that's sick, not him. Okay, be upset (I quite like people to be upset, it's flattering) but don't make such a big deal of it. If there's a time to start crying, I'll tell you! Until then, be normal. But that's not what's really annoyed me. Mum told him to not make such a fuss so I think he's told everybody (extended family etc) not to get in touch so we haven't heard a thing from anybody except my lovely cousin who's been in touch a lot. I don't want a fuss, but I also don't want people thinking that they can't call me. I like to be called! (I also like presents, by the way.)

But what's really really pissed me off is the conversation Mum had with him today. Some background first though. My Grandma Shirley died a few years ago of ovarian cancer but she lived for four years after being told she had six months. She was an amazing lady who fought all the way. Grandad was pathetic through that too. He moved out of their bedroom into the spare room so that he wouldn't have to see Grandma's bald head when he woke up, and Grandma had to wear her wig all the time. I understand how it might be distressing to see her bald if it was a constant reminder of her illness but it was her that was ill and her that was affected most by her being bald. He had no excuse to be offended by it. She had to look at his bald head every day for years! I actually thought that Grandma looked cool. I never expected that he would be bothered by the prospect of my hairloss though. I'm his granddaughter for fuck's sake! When Mum rang him today, the main thing he wanted to know was whether I'd lost my hair yet. What a bloody cheek - to ask it and to be bothered about it. Well, for anybody else who cares, no, I haven't started to lose my hair yet but I will. If it offends you, sod off! If there's one person I will not be covering up in front of, it's my grandad. Ha.

Well that's enough ranting for now I think. So much anger is probably not healthy, but it's something to think about.

Rach x

P.S. I've just realised that I'm gradually getting more and more personal with my blogs and I'm showing more of the real self that I'd normally not show, especially to people from work. Well that's too bad. This is me. Hello!

11.36pm, 24th April

2007-05-07T16:51:00.000+01:00

If anybody ever tells you to have chemo, don't do it just for the fun of it. They forgot to mention that it would turn me into an old woman. On Thursday, my joints and bones started aching and by Friday, I was rocking myself like a crazy person and considering amputating my shoulders just to get rid of the pain. Then my wrists and elbows and ankles and knees and hips started hurting as well... a kind of achey, stabby pain that doesn't stop when you move and it doesn't stop when you stop so you just kind of alternate between continuous movement and staying absolutely still. By Saturday, I was just about managing not to cry all the time so Mum went to Sainsbury's and I now LOVE the pharmacist there. Ibuprofen and paracetamol weren't working so the lady suggested some homeopathic stuff called Rhus Tox... combined with Ibuprofen, I love that stuff! I can now do things without dropping everything because of the pain, and I'm not half as irritable or tearful as I was.

Another old lady thing - chemo messes with your digestive system, to put it politely, and gives you all sorts of old lady problems. To anybody who's been listening to me whine about that particular issue (see, whining about gross stuff - another old lady trait), the problem has now been resolved, thankfully!!!

My body is very confused - I have old lady joints and insides but my skin has reverted to teenagehood. I'm never going to laugh at a spotty teenager again. I normally don't have the best skin but when I'm back to normal, I will certainly count my blessings. Nasty nasty steroids, turning my face into a volcanic mountain range. Chemo is so sexy! At least my face is nearing normal again now, so I can go out in public again soon.

Apart from all that, I'm feeling okay, just very tired. My tastebuds are either nearly back to normal or I'm used to it so I'm managing to eat my way through many many danish pastries and the beautiful chocolate caramel shortbread that Mum made. Sorry Em, you're not getting any!

Now I just have to look forward to next Monday, when I go for my next chemo (part 1b) and the crappiness starts all over again. I'm hoping not to do the fainting thing next time though. I'm getting a picc line put in my arm on the same day, so hopefully no more needles from then on, cos it's a kind of needle that just stays in my arm for when it's needed. Nikki already named the picc line Pip, in case you were wondering.

Rach x

10.35, 18th April

2007-05-07T16:46:00.000+01:00

Anybody who knows me at all well should know that I live for chocolate and sweet stuff... well my taste buds are cocked up and everything tastes like slug now. Bastarding chemo ruined my life! Chocolate and Coca Cola make me feel sick, orange juice is nasty, water is nasty, chocolate milkshake is nasty, bread is nasty, quorn is very nasty. Iceberg lettuce is okay. Fun.

Oh well, I'm sure there are worse side effects to have instead and I'm sure that there is worse to come. I'm in a cheerful mood, as you can tell.

I'm tired, still nothing new there, and I'm very bored. There's only so much daytime tv a girl can take - it all seems fun and slobby when you know you have to go to work later in the week, but my GP has signed me off work for at least three months, probably longer and now the tv is all ruined. When you should be doing something else, Diagnosis Murder seems indulgent and naughty, but when there's nothing else to do, it's just plain crappy!

I'm too tired to read properly, I'm hungry from the steroids I'm supposed to take but I can't eat cos everything tastes of slug, I'm bored, I'm missing seeing people other than family but I don't like having to explain how I am to everybody who's not family, I'm very very bored, I'm angry at people who should've been more supportive, I'm angry at people who've been too emotional and weepy, I'm extremely bored, I'm fed up of tv and I don't have the concentration for films, the only thing I really want to do is buy things online but I have no money because I can't work so I can't afford to do it. God, I'm a moaner. Well, out comes my trump card here... "I have cancer so I'm allowed to moan." Ha.

It's not that bad really. I'm just having a moan and groan. It's evening time and I'm tired and everything will seem better in the morning. Arggghhhh talking of mornings, apart from the chocolate slugs, my other really bad side-effect of this whole crappy thing is that I wake up early in the morning and can't get back to sleep. Well, I say I can't get back to sleep... what I mean is that if I stay in bed I can't sleep. If I actually get up, all I want to do is go back to bed. Crappy.

Well, toodle pip for now. I'll be happy and springy and joyful tomorrow because we're going to look at the photos we had done on Sunday to pick some to buy. Should be entertaining!

Rach x

8.30pm, 16th April

2007-05-07T16:43:00.000+01:00

Well my first chemo session is over and done with. I started at about half eleven today and was home just in time for Neighbours at 13.45. Perfect!

I have a little confession to make. I've always teased Emma for being such a baby when it comes to pain - she quite often turns green and faints. Well today, the nurse had a bit of trouble getting the needle into my vein and it didn't really hurt that much and I don't mind needles but I did very nearly faint. Whoops! It was quite horrible really, I've never had that happen before.

Anyway, once that was over and I was soaked through with sweat (I'm so ladylike) and the needle was in a different, less springy vein, the chemo was fine. My chemo is a cocktail of four different drugs that go in separately - three quick ones then the last one takes about an hour, so I was in a little room for the first three then in a nice comfy chair in a big room with other people for the last one. Typically, I started to get a migraine when the last one was going in, so out came my trusty lavender oil and mum left me for a doze. Just as I was getting to sleep, somebody came and sat right next to me (there were plenty of empty seats on the other side of the room near the AWAKE people) and started talking very loudly to her friend. How rude. I got out my Bloc Party CD and the noise dissolved... snooze.........

I got about 20 winks and then lunch was brought around... BUT... the stupid woman a few seats away from me, who didn't actually seem to be having any chemo, chose the hot pot, which was very stinky and put me off completely, even though I was very very hungry in an 'I could eat an elephant' kind of way. One hungry Rachel = one grumpy Rachel. As soon as stinky hot pot woman had finished gobbling, she got up and left. Freeloader methinks. Rude rude rude.

Then the loud people left and I got in a few more winks, only to be disturbed by a guy with his daughter and his mother sitting next to me. Come on guys, I know I'm lovely and everything, but when I'm obviously trying to sleep, why the hell do you have to sit next to me and be loud? There were plenty of empty seats, but NO, right next to Rachel is the best place. Grrrr. Rudeness.

To make matters worse, the guy smelled of garlic and spices, which I don't mind when it smells fresh and I'm in the mood for it, but when you're tired and a bit migrainey and you're having chemo, it just makes you feel sick. Plus the shitty little daughter was eating stinky cheese and onion crisps very noisily with her mouth wide open. Nasty little gobbler.

Luckily mum came back or I might have (a) grabbed the crisps and thrown them away, or (b) called a nurse and asked for them to be forcibly removed, preferably dragged out by a burly security guard, or (c) set up a craft session with glitter and sequins and glue and asked the girl to join in, minus the crisps.

Soon after that, my chemo was finished so I just needed the cannula removed and then I could go home, with a nice selection of anti-sickness drugs to take over the next few days. I actually feel quite okay - I'm very tired but that's nothing new. I don't feel sick and I don't seem to have any other side effects yet, so fingers crossed!

My next appointments are on the 30th April, when I go at 0900 to have a Picc line inserted (semi-permanent cannula type thing in my arm so I don't need any more needles), then see Dr B at 0945, then have my next at 1045. I'll be having chemo every other week, if all goes according to plan, for four months. One cycle of chemo is two sessions, so I'll be having eight sessions over four months, making up four cycles. Very exciting.

That's pretty much everything for now. This is all very boring but I'm bored and this is getting like a journal, which is fun for me at least. I'll probably keep you updated with any interesting symptoms (I forgot to say that my first wee after the chemo was bright reddish-orange) but I think I'll leave out any grossness!

Rach x

10.36pm, 12th April

2007-05-07T16:41:00.000+01:00

God I'm bored. I didn't realise how much my life revolved around work. Okay so I only actually work(ed) 20 hours a week, but I spent quite a lot of time at home doing extra stuff like getting my crafty sessions and parties organised (and practising with glitter and sequins!) and coming up with fun stuff to do. Now I'm not working at all and I have nothing to do. I suppose even when I do go back to work I'm not gonna be in the kids' section anymore, but at least I'll be out of the house for the 20 hours.

I saw Dr B again on Tuesday to ask any more questions and give consent for them to pump poison aka chemotherapy drugs into my body. Didn't really learn anything new. I'm in for a pre-chemo assessment tomorrow. Not sure what that entails but it doesn't sound very fun.

I've spent a good few hours yesterday and today fighting with my sewing machine, making cool headscarves. It's really difficult to find nice ones that aren't hideously expensive, so I was forced to make my own. I'm pleased with the results though... black polka dots on white, pink gingham, plain black and beautiful red hippy type headscarves are now in my wardrobe.

If any of you have been following the very bitter saga of my bastard father and the money that he refused to pay, that's all sorted now. He MADE mum go back to court because he decided that he wouldn't pay for my last year at uni, even though that was what my parents agreed to do when they divorced, but he got his comeuppance. Mum was okay just to forget about it but he insisted that they go back to court to get it all clarified. Well, the judge said that he had to pay the last year's payments for me (totalling £1500) and that he should keep paying until I finish in June. He also has to pay half of mum's court costs. Stupid little man.

Ahh I'm still so bored. I need something to do!

Grr.

Rach x

7.31pm, 4th April

2007-05-07T16:32:00.000+01:00

I had my bone marrow biopsy on Monday and I can say with 100% certainty that I will never be having that done again, whatever is wrong with me! The doctor who did it was the consultant so he was the best person to do it and it still took three attempts to get what he needed. That's three goes at sticking the biggest needle I've ever seen through the skin and muscle on my hip straight into my bone. If you ever need to have one done, it's not the worst pain in the world, but you can feel the doctor twisting the needle right and left to drill through your bone, which made me quite queasy. I've heard it described as feeling like having your soul sucked out, and I think I agree. Yuk. It's making me feel sick to think about it now. That's enough about that!

I saw my oncologist, Dr B, on Tuesday. It was very nice of him to see me - he wasn't supposed to be doing a clinic but he came in to see me because I'm so young. He wasn't what I was expecting at all. I thought he'd be short and fat and old, but he's young-ish and slender and very nice. He talked to us (Mum and me) for at least an hour, explaining everything really clearly. I didn't need to ask any questions at all. I much prefer doctors to surgeons!

I got my final diagnosis - Nodular Sclerosing Hodgkin Lymphoma, stage 2. I have the lump on my right collar bone (Meredith), a lump in my chest (George) and another under my left collar bone (Derek).

The Nodular Sclerosing bit is a particular type of Hodgkin Lymphoma, apparently the most common, or, as I prefer to think, the most popular. It's all to do with a particular type of cell called a Reed Sternberg cell (I think it's a cancerous B-lymphocyte/type of white blood cell).

The stage 2 bit is how far it has progressed, with stage 1 being the earliest and stage 4 the worst, so I'm not too bad. It means that I have lumps in more than one place but they haven't crossed my diaphragm - they're all above it.

The treatment for that is chemotherapy followed by radiotherapy. The chemo type is ABVD (the initials of the drugs used) and will be given every other week for four months. Then, probably, a month off and then five or six weeks of radiotherapy every day. Fun. I've been asked if I want to join a new trial to see how using PET scans (a clever scan that doesn't just see lumps, it can tell what they are too) can affect treatment. I think I'll go for it. What that means is that I'd have three months of chemo, then a scan to see if all the bad stuff has gone. If it has, 50% of people carry on with the standard treatment of another month's chemo then radiotherapy and 50% will have no more treatment. At the moment, PET scans aren't used and everybody is given both treatments just in case the chemo doesn't get all the cancer, but radiotherapy has more long term risks so they're trying to see if they really need it. It's definitely worth going for because there's only a tiny risk that they get it wrong with the scan and it could mean that I don't have to have unnecessary radiation.

I won't be working during treatment because chemo doesn't just kill bad cells; it also kills off good stuff. That means that I will be prone to infections and working in a shop with lots of scabby diseased children running around isn't a good idea! I don't know how I'll feel on chemo - I could feel like crap or I could feel fine. I'm hoping to go back to work as soon as possible (if the doctor says it's ok with the white blood cells, I'll be back) but my GP seemed to think that I should be off the whole while.

Dr B is seeing me again next Tuesday and I'll see various different specialist nurses and people and then I should be starting chemo in the week starting 16th April. I won't be going back to work until after it now - at the moment I'm too sore from the biopsy and I'm sleeping about 16 hours a day, and my GP doesn't want me getting any infections because that's not good and I'm more prone to them even before chemo cos my blood is dodgy. I'm going to be poor because the sick pay where I work is for a simply shocking 2 weeks and then it's on to Statutory Sick Pay, which is only about £70 a week. Good job I still live at home and have some savings. Bastarding cancer - stealing all my money!

Well that's all for now. If you're from work, I'll probably be in some time soon because I'll have to bring in sick notes and I'll need lots of books to read. I'll come in to model my soon-to-be-fantastic range of headscarves and hats too! If there's any interesting gossip, please keep me updated. I'd hate to miss out on who hates who and all that fantastic rubbish.

If you're not from work, I'm only as reclusive as ever, so you may see me or you may not!

Happy Easter everybody.

Rach x

3.03pm, 22nd March

2007-05-07T16:29:00.000+01:00

Well, shit happens.

Let's start at the very beginning; it's a very good place to start. When we read we begin with ABC, to diagnose we begin with BI-OP-SY...

If you've read my other blogs about Meredith, you'll know that when I last wrote I'd just had a biopsy and was waiting for results. If you don't know that, I suggest that you go back and read it! Tut, fancy being unprepared.

Well anyway, after lots of calls made by Mum to the surgeon's receptionist / secretary (who is a very lovely lady, by the way) and calls from her to the pathologist and from the very lovely doctor Mum works with (Dr M. aka God) to the pathologist, I got an appointment to see Mr DC yesterday, just over a week after the biopsy.

Not all of my test results are back yet, but they know enough to say that I have some kind of lymphoma, which is cancer of the lymphatic system. There are loads of different kinds it could be, so that's why the tests take time. I now have to go for a bone marrow biopsy and a full CT scan sometime over the next week or so, and I'll be seeing the oncologist within the next two weeks-ish. People see the word 'cancer' and immediately it's all doom and gloom, but there are worse things/kinds it could have been and I'm just glad to know so we can do something about it. I don't really know that much about treatment and prognosis etc. yet because it very much depends on the kind of lymphoma. It's most likely to be Hodgkin lymphoma, which is what Delta Goodrem had, if that means anything to you! For more info, http://www.cancerbackup.org.uk/Cancertype/LymphomaHodgkins is a good place to start.
I've told a few people so far and I'm not keeping it from anybody, but I'd really rather people didn't make a big deal about it. If you normally talk to me, talk to me; if you don't, don't! That sounds really mean but I'm carrying on as normal and everybody else should too. No big drama thank you. On the other hand, if you have anything you want to know, just ask me. I'm not going to cry on you and I'd rather you just asked than wondering privately.

Thank you to the people I've told face-to-face - you've all been very supportive without being majorly dramatic about it, and I've appreciated the hugs (any chance for me to cop a feel is fine by me! Err, I mean the men, obviously). If you're just finding out on here, I'm sorry not to tell you to your face but it gets boring after a while, saying the same thing.

Ironically, in case you were wondering, I feel fine, better than I have for ages. Woohoo for me! And if you're from work, I've got holiday until the 31st March, so I'm not sick, just enjoying myself.

Toodles for now.

Rach x

10.17am, 14th March

2007-05-07T16:28:00.001+01:00

I got to come home last night, so I didn't need to bother with the pyjama issue at all! Yesterday, I had my op at about 1130, was recovering by 1330. Had to wait around to see if I could get a CT scan cos they missed off my neck the other day - silly really, considering that my neck is where Meredith is/was! They didn't do it yesterday so I went back for 0830 today and had it done. Just got home again.

I'm a bit tired and sore and I have a purple pen mark on my neck that won't come off, but I'm happy to be home, especially as my lovely blisters got me a teddy and some delicious chocolates, which I'm NOT sharing!

I can't drive for a while cos I can't move my neck properly and I don't know when I'll be back at work cos I can't lift anything or move very fast, but it should be quite soon.

Just have to wait for the scan and biopsy results now, which should be next week sometime. I don't know how much of Meredith is left cos all around her is very swollen so I can't feel her. I didn't even get to say goodbye *sob* and now they're slicing her up. Poor Meredith.

Rach x

11.34pm, 12th March

2007-05-07T16:22:00.000+01:00

All is quiet in the Coulshed house. Well, no really, it's as loud as usual. I'm making my final preparations for going into hospital tomorrow. In case I haven't told you, I found a weird bump called Meredith on my collar bone last Monday, went to the GP on Tuesday and had various tests and pokings at the hospital for the rest of the week.

After a weekend of stressing over how many pairs of pyjamas to take with me, I'm going into hospital tomorrow morning at 0800 hours to have Meredith removed so they can see what it is. Today I had a CT scan, so I should get the results of that tomorrow, then down to theatre to be chopped up and have various cameras shoved down my throat while I'm still asleep.

I spoke to Amybaby today and we agree that hospitals should do special NUS hours for students - 'Not Up So early'. 0800 is far too early and I'm not even allowed breakfast and it could be ages till they actually put me to sleep, so I'm going to starve.

I decided to take two pairs of pyjamas, which I'm sure you find very exciting, as I'll probably be staying there for Tuesday night and if they have to put a drain in the wound (gosh, 'wound' sounds so dramatic!) I might even have to stay on Wednesday night too. I'm dreading having to stay there. I don't mind hospitals but it's the Ear, Nose and Throat ward so it will be full of loud breathers and snorters and I don't like sharing facilities. Yuk.

So anyway, I'm dedicating my blog to Meredith until she has been resolved or whatever they're going to do to her. I should really have started this last Monday but I didn't think of it then, so here's a summary of the scintillating action so far:

Mon 5th March - found Meredith in the evening

Tue 6th March - went to see Dr Ashton (GP) who poked me all over and sent me for a chest x-ray to rule out TB.

Wed 7th March - went for chest x-ray and mum asked a lovely doctor she works with to have a look at it. Dr M. said it wasn't TB but noticed another lump (George) in my chest somewhere. Had blood taken for various tests.

Fri 9th March - Saw the very lovely Dr M. at 0800 to discuss blood test results. Most things normal (my liver is fine, I've not had too much alcohol) but white blood cell count is a bit higher than normal. Saw Mr DC at 1030 who stuck a mouse down my nose, well really it was a camera that looked like a mouse's tail, but mouse sounds better than camera. He said he didn't like Meredith at all; apparently she's craggy, which is bad, so he wants to chop her out.

Sat 10th March - was supposed to be at work but had a migraine so couldn't go in. Probably stressed about the pyjama issue. Is one pair enough? What if I get blood or gunk on them? Does hospital etiquette say I need a fresh pair each night? It's a potential minefield.

Sun 11th March - bought two new pairs of pyjamas. They're very nice. Also had to buy small toiletries and nice fluffy purple towels (can't be arsed washing my normal ones, I'm such a skank). Going into hospital costs a lot.

Mon 12th March - went for a CT scan at 1400. It was quite fun. I got to wear a hospital gown, which showed my bum out the back. I'd predicted this so had worn lovely pink knickers but the lady gave me a dressing gown to wear too, so no flashing my bum in the corridor. Very disappointing. The radiographer was a nice lady called Helen and we had a funny chat while the scan was done and she injected me with a radioactive thing that made me feel quite warm and also like I was about to wet myself. That was fun but I didn't wee myself, not even a little bit.

Now it's bedtime because I'm rather tired and I have to be up at 0700 tomorrow. If they think I'm having a shower before I go in, they're going to be disappointed. At that time of the morning, they'll be lucky to see me awake.

Not sure how long I'll be away from home and my lovely computer so I'll get one of the blisters to log in as me and post a blog for me, if I can be bothered.

Rach x

First post

2007-05-07T16:20:00.000+01:00

Righty-ho, well, I started a blog on MySpace but it's not as good as a proper one, so I'm redoing it on here. I'm going to use this blog as a sort of Hodgkin's Lymphoma journal, so I'll copy in my previous MySpace posts from when I first found Meredith (my right collar bone lump). I don't know what will happen with all the dates and stuff. I imagine that all the previous posts I put up today will show today's date, but I'll put the original date as the title so it should look okay. I'm still learning how to drive this thing so excuse any weirdness.

Rach x