Thursday, 5 April 2012

Hair Today, Fraggle Tomorrow

It's important to note that this post has been written in two parts. A good week and a bad week. The first half is so terribly bitter.

It's been a long time since my last post and this is purely because this week has been an unbelievably stinky pile of shit. The chemo seemed to be taking some semblance of a pattern and I was hoping that being a little more prepared for it all would help me get through it easier. I felt moderately well until Wednesday when the jaw ache returned but not as aggressively as the previous occasion. The worst part of the chemo pattern was the effect that it has on my stomach. It seems that my body forgets how to digest food and my stomach is filled to the brim with acid. Although my doctor had given me Omeprazole to diffuse the acid, it wasn't working. I developed a permanent burning sensation in my stomach like a  dirty fingernail gnawing at the lining of your stomach. It was/is one of those pains that is dull but chronic, enough to wake me up. I called my GP and she prescribed me some sleeping tablets but they were crap, they helped me fall asleep but didn't knock me out through the night. I was waking up through the night and then waking up at 7am unable to get back to sleep, then all that I did was wish the day away with a hot water bottle on my stomach, waiting for sleep when I wouldn't have to deal with the pain. I would wake up every day hoping it would be a little better but it wasn't. So I cried and repeated "I can't do this" for three days. On the Friday I was still in pain but had developed a mentality similar to people with chronic pain. You try to ignore it and get on. What I had to get on with was cutting all my hair off. My plan of keeping my hair up was a huge error as the hair that was falling out developed a strange texture and became incredible matted. It was almost woven like when you make felt or something. You could not put a brush, comb or pencil through it. I told my Mum that we were going to have to cut it all off because it was really irritating my scalp and there was nothing else that I could really do. I sat on the stool in my bathroom (not stool as in poo) and she came in with the scissors. I decided not to watch in the mirror because that was all a bit intense and melodramatic for my liking. It reminded me too much of when you watch yourself cry in the mirror to make yourself cry more like a loser. Jen got really emotional and cried that she really didn't want to do this. I felt bad for her but she had to do it, so she began cutting. It felt strangely exciting to have it all cut off. Jen had to hack through it because it was such a matted mess and at once point I caught a glimpse of myself in the shower door. I looked like a Fraggle from Fraggle Rock. This made me laugh and my Mum tried desperately to stifle hers but I looked fucking ridiculous. If you were unfortunate enough to miss out on Fraggle Rock as a child, I'll save you Googling it.
Christ. So I was now the proud owner of a psuedo-lesbo hairstyle and could honestly not give a shit considering I had a volcano in my stomach. Tracey the wig lady came on the Tuesday to look at my hair colour and see what I wanted in style etc. She was coming on the following Tuesday with some choices and would sort it all out for me. So knowing I had the wig in the pipeline I really wasn't arsed. The stomach issue was the thing that was bringing me down. During those days I was ignoring all phone calls, texts, emails and any form of communication with the outside world. The last thing that I wanted to do was to have to sit an write or text or talk about why I felt so shit and why I was so depressed, knowing that no one really understood. "Oh God that sounds terrible" Yes, it fucking is. It's no one's fault and I wouldn't wish it on anyone else but it gets mentally draining having to explain the same stuff to people and then hear bullshit suggestions about what I can do to make it better. "Have you tried Rennies?", kiss my arse. The most frustrating part of being ill or in pain is when the medication that is supposed to make it better doesn't work and no one can explain why. It just doesn't.

My mum was supposed to see my brother in London on the Saturday so he could treat her to lunch for her birthday but because my body was being retarded she didn't go and he came down instead. I felt really guilty ruining their day and felt even worse that my brother came down because I knew I was going to be a horrible person to be around. The only person I could talk to and be around was my mum. I had reverted back to being six years old again when I would become anxious when she wasn't around and couldn't concentrate on anything until she got back. I was in my room on my own watching the only thing my mind could take A Place in the Sun. James came in and said hi and saw me for the first time with my fraggle hair which was about 2 inches long. I keep forgetting about other people's feelings and reactions and failed to recognise that this would be the first indication of me really being a cancer patient. He sat on the bed and asked me how I, was visibly shocked by the hair. I replied stonily that I cut all my hair off, didn't care and had a chronic stomach ache and that I didn't really want to be around anyone. I'm such a lovely sister. He left and I felt bad but my mood was so low there was nothing I could do to help it. I was so angry that I wasn't getting any better and my mood was bi-polar to say the least. I would flick between ultra tactile,loving and childlike to an icy bitch.
Those few days were hard, it was a case of waking up and waiting to go to sleep so that I didn't have to be conscious and deal with the pain. On the Tuesday, Tracey le wig lady came and sorted me out with a plush wig that more or less is a complete match for my hair. It doesn't look immediately wiggy so I'm very pleased with myself. It wasn't cheap. Jen sorted me out though, she's a good lad. I feel fine wearing it out with a hat but without I'm so much more aware of it, it will just take a bit of getting used to I suppose.

On Wednesday I went for my check up with Dr Gale and he knew something was bad when I started to cry. I normally walk in there with a "no it's all good" attitude because quite honestly it is most of the time. This stomach stuff was insufferable and I told him how relentless the pain had been. He suggested that it was the Vinblastine, the V of ABVD. He thought it was that because of the jaw ache that I was getting as well and the all over prickly pain. Vinblastine affects your nerves so anywhere there is nerves it can affect it, I don't know much about the human body but I do know that you have HELLA LOTTA NERVES. He said that he was going to omit the Vinblastine for a week and put me on a course of steroids instead to see if it made a difference. If it did he would reintroduce the Vinblastine in a smaller dose and couple it with steroids which I respond really well to. He did say that I might get " a bit of a chipmunk face"...nice one. Bald and chubby cheeks. Come and get me boys. My mood for the next few days was a little subdued. I had lunch with Adele on a lovely day and we sat outside discussing our illnesses. I took a lot of my attitude and positiveness from the way she does with her MS. She doesn't complain and doesn't let it take over her life. These are the cards you get dealt and you either wallow in self pity or try and enjoy your life. We sat being tragically clichéd saying how the simple things seem so beautiful and more impressive when your a couple of sick fucks like us. We then went into town where we were lambasted by those charity wankers. They go for Adele when she's on her mobility scooter thinking "well she's a sorry bastard, she must be compassionate enough to give me 30 quid for a key ring". We both stood there while Señor Charity Wanker went on and on and Adele reeled off all the charities she gives to, stressing she cannot possibly afford more. He was a twat and wouldn't shut the fuck up, so I pulled out my C card and said to him that "Unfortunately, she's disabled and I have cancer. We're both poor so have our own problems to deal with". Rude? Certainly. Unnecessary? Debatable. Quite frankly he was pissing me off, plus I know he's getting paid £7.00 an hour to do this 'noble' work so any money I donate won't be going to these kids, it will be funding his excessive hair gel habit.

Chemolicious Friday rolled around and I brought Emily O and Kathryn fresh from returning from uni. Chemo is usually cool had my nurse Sally been there. She wasn't and instead I got left with THE TROLL. The troll is a bitter, rude, short, angry little woman that runs the day unit. Fucker. The first thing she said to me was "You can't have two friends here". I didn't understand. What the fuck was she talking about, I had two people last week and no one had ever told me there was a limit on it. So I cried. I was already in a highly emotional state for the past week. I cried at Britain's Got Talent, the Voice, You Deserve This House; the list is long and embarrassing. She then said that she would let me have them there for that week because I didn't know. She then insisted that next time I could only have one because they would be have 40 patients there. Strange as there are only 8 chemo recliners, dirty, rotten, ratty liar. She also poked about in my veins and made it sore so the chemo was a bit of a bitch that week. My friend Kathryn decided to wind her up the entire session making comments like "child birth is disgusting, when it came down to it I just wouldn't push". She was disgusted but it indulged her "I KNOW BETTER THAN YOU" attitude, digging at us saying "you didn't do physics, did you?". Bitch please. My mum hated her from the moment we met her, she had been incredibly rude to us before she knew that I was a cancer patient. Those kind of fake niceties make me feel sicker than the chemo, you can see right through it.

The weekend after the chemo was great and made me feel like a normal person again. Most of my friends from uni were back and I saw tons of people from school and the like who were nothing but lovely. I did get told by a bouncer to take my hat off and I bluntly explained that I couldn't because I had cancer and was wearing a wig. He looked pretty awkward. Earlier in the night as well some fellow tried playfully whip my hat off. I almost had an aneurysm. Vigilant wig surveillance is in order I think.

The next couple of weeks are looking good. The Vinblastine is definitely the one that makes me feel like utter shite because I feel absolutely fine this week. I'm making the most of it, visiting Brighton and London to see my brother and because a wonderful friend of mine has secretly organised a charity run round London. He won't want to be named but I will Mr Dom Garforth. Next week is my birthday and Birmingham folk are coming to play along with Sean and his family who I absolutely love. Nights out are hilarious and we all adopt the attitude that we are the best people out therefore don't try to join in. It's just what I need to take my mind off the impending PET scan. I have my 4th treatment on my birthday and after that the scan. I really, really, really hope that it's all gone or at least have a concrete finish date for the treatment. I can't wait to get back to uni and being able to make plans for the months ahead without the uncertainity of the length of the treatment. If everyone could send good vibes of cancer killing kind it would be greatly appreciated.


  1. Good vibes x a million, a billion, a googol (let me know when to stop). Despite your rubbish week you continue to write brilliantly and to raise a smile in your readers, loved the "hair gel habit" person, wish he could read this and take a moment to think (along with your charming day unit troll person...) Always great to read your blog, think of you lots, sending you love along with the good vibes xxx

    1. Thank you! She's tricky, I hope I don't get her again today. Always lovely to hear you've read it though I can't help but feel the posts are getting slightly lack lustre. I may have to become more interesting. Thank you for the vibes and love xxx

  2. You have no idea who I am and I have no idea how I found this blog but I don't regret it. Always make sure I read your posts and loved the hair gel nobhead, I'll remember that next time I get harassed by these charity wankers prancing around like Gandhi. All the best :)

    1. I don't know who you are but it's actually a greater compliment getting lovely comments like this from people I don't know. Glad you enjoy the blog and please keep reading even if they begin to get terribly dull. xxx