Monday, 3 August 2015

The editor didn't want this

I wrote the following for an editor for a newspaper who didn't want it.  I thought I'd therefore share it with you.

Old man's cancer, chemo plague, fatigue, fertility, sobriety, limbo land and being user friendly.  These are not words I ever thought would sum up my 20s.

Diagnosed aged 22 with old man's cancer - Chronic Myeloid Leukaemia (CML)- on Friday 19th January 2007. Nearly feinting twice in a week was enough of an impetus for friends to nag me into going to the doctors. Looking back weight loss from a size 14 to an 8/10 was not in fact due to eating a bit better and going to the gym. Nor was the hair loss 'just because I have thick hair so a lot falls out' either.

Rare because of my diagnosis and age. Around a 100 are diagnosed a year with CML; the majority male over 40 and anyone diagnosed aged 18-25 is rare, the lost tribe that people don’t realise get cancer. Not that I don't enjoy being rare as the 'ignored' middle child until my diagnosis.   I also live on a daily pill form of chemotherapy and have for 8 and a half years. Another anomaly with my diagnosis is it happened in a day. A blood test because the doctor didn't know what was wrong. That night the phone rang. Long story short I guessed I had cancer over the phone because I refused to go in until I knew more. I was in Edinburgh; my parents were in West Berkshire. I wanted to phone them not some doctor.

When diagnosed I had 3 questions. Will I die? Can I drink? Can I have babies?
I was told that as long as the pill chemo worked I wouldn't die.
Yes I could drink. So did. A lot. Too much. So now I don't. Looking back I used it as a coping mechanism.
The first chemotherapy I started on didn’t affect fertility.
Fine. I was good to go; I didn't need to know anything else.

In some ways I say I lost my life that night and there is a parallel me living the life I thought I was going to have. Completing my History of Art degree, then law and working in art fraud. Cancer fucked that up. Side effects I was told I wouldn't have and ignored by my consultant meant I had to take a year out of University. I ended up leaving with a general degree which means fuck all. I call my BA in Humanities and Social Science my fake degree because it means nothing. I now have a real one. A BSc (Hons) in Complementary Medicine: Naturopathy.

Fertility was something I didn't think I would have to consider at 22 but I ended up having eggs frozen after switching chemotherapy due to intolerance.  I was put under a lot of pressure to have embryos frozen but didn't want a sperm donor. Ironically if I'm still single at 33, I'm going to have an IVF baby. Not having children is the worst thing I can imagine happening. Worse than all the cancer shit I’ve had to deal with. When I was a teenager I thought I would be married with a baby by now. I think that not drinking is off putting. I’ve seen men take a step back from me when I say I don't drink. Maybe it's just all the shit that goes on in my head. Or it’s cancer and chemotherapy. Fatigue definitely gets in the way. Someone thought I was blowing them off and I wasn't interested when I was too tired to meet up. They’re now in a relationship. Maybe this would have happened anyway.

Fatigue. It's really shit.  I’m on the train writing and all I want to do is cry. Two nights poor sleep because I had to get up to pee about 5 times both nights. I have recently upped the dosage of my pill chemotherapy and think my liver and kidneys have gone in overdrive. My chemo plague has been awful recently too. Spots that appear on my face, neck, shoulders, back and chest. I think God is getting back at me for being a naughty teenager when I had pretty good skin.

Back to fatigue. It’s what I struggle with the most; I’m so user friendly to the eye. I’ve always had my hair. I don't look ill. I'm not ill. In remission but on treatment. Limbo land. It's a funny place to be. Never knowing if I will be able to come off chemotherapy which I strive for. I’m 75-80% good with my diet eating as organically as possibly. My breakfast is a fruit and vegetable smoothie. I exercise. I smile and try to be happy. I forget I have cancer. And then. Bam. It hits me because I can't function on less than 10 hours sleep if I have to do anything that needs brain power. Yes. I can sit on the sofa and read. Or colour in, my new thing. Or write my blog which stops me from going crazy. Less than 10 hours sleep and having a meeting or God forbid two meetings, alongside some research for a patient. Anything I have to focus on. Well. I can't. So I cry or sit in a foul mood. And I forget things. My memory is fucking awful at the moment.

I walk around with this silent undetectable thing that hinders my life. I stopped being able to do whatever I wanted during the day AND night in my early 20s. I can't remember what it's like not to be tired. Not to worry about doing too much. Constantly checking in to see how I feel. Am I ok? Do I need to eat something? Can I walk to where I need to go? Do I have to cancel my plans? And no. I'm not so lucky to be able qualify for a Freedom Pass. I’d much rather have my life back, make plans, do them, and not need 12 hours sleep to recover.

During my last degree I didn't have a social life for a year because I couldn’t study and see friends. A wonderful friend got me though those very dark days of exhaustion and depression, a side effect of the chemotherapy I was then on. His encouragement and trips for the daily 'share' bag of chocolate got me through. I knew it was really bad when I ate a bag of giant Milky Way buttons in under 5 minutes and thought about another.

I hate all the 'accepted' language around cancer. Fuck knows who allowed it. I don't fight, battle or suffer.  Maybe it’s because I live with it and have for nearly a quarter of my life. I can't have those negative feelings towards cancer the floats about in my blood stream.

I wouldn't change my diagnosis. Aspects of it yes, in a heartbeat. In some ways I lost my life at 22 but the one I gained I wouldn’t change. People are very kind to me on twitter and with my blog. They call me an inspiration. But I'm not. I'm just living my life the best way I can. Whilst I had some shocks and changes in my 20s, it's made me, me.

1 comment:

  1. Louise (Delphdahling)3 August 2015 at 15:06

    I'm glad I've got to know the "you you" a little better after reading this. To hell with the Editor I say x