I wrote this a while ago to send out to publications to see if they wanted to publish it and/or liked my writing. I have been in talks with one editor they said this topic has been written about loads before. I replied. Well then why do the media keep on using it if patients hate it?!? And then I saw 'Cancer Girl' in the Metro earlier in the week and thought, now is the time. If you know any jurnos, feel free to share this with them,.
Cancer sufferer. I hate that phrase. Along with cancer
journey and winning or losing their battle with cancer. I know hate is a strong
emotion to use in reference to words. But I really do. I read those media
friendly approved words and phrases, by fuck knows who, which are also often
used by cancer charities which does my head in, and feel rage.
But I think I'm allowed. As I am a cancer sufferer battling
on their journey and winning. If you want to use the accepted language that
everyone feels comfortable with.
Which I hate.
I do however have a fuck load of survivor’s guilt. Is it
because of this language associated with cancer that you see everywhere? And
have you noticed, as was pointed out to me by a friend who also follows me on
twitter when I was ranting about this, that only cancer has this? You don’t
hear of cardiovascular patients winning or losing nor with diabetics. Why is it
cancer has this?
I do however have my own cancer language - chemo plague, the
spots I get periodically which I blame my daily pill chemotherapy on. It could
of course be hormones or maybe the cheeky bit of chocolate I had. But it's
funnier, to me anyway, to call it chemo plague.
I have to laugh.
I also have a cancer card, an invisible thing I use to my
advantage, normally when I don't want to do something. And once again. It makes
me laugh.
I’m a TYA OAP – teenage young adult old age
pensioner. I was diagnosed at 22 so fell
within the TYA age bracket of 16-24. I
am now at 30 a little bit beyond that but still feel my affiliation and
allegiance to those TYAs, the lost tribe often forgotten about and The Teenage
Cancer Trust will be my charity until the day I die. I wasn’t lucky enough to have access to one
of their wards when I was diagnosed as there wasn’t one in Edinburgh, and my
treatment was well, fairly horrific being ignored by a consultant who didn’t
know what to do with me because I was about 60 years younger than the rest of
their patients and generally speaking able bodied. When I started reacting to my treatment and
showing severe intolerance I was told that I shouldn’t feel like that because
according to the research I won’t.
However, this is not a space for me to talk about that. Again.
I have a blog. I talk about that there. A lot.
Because 8 years after that happened, I still carry it around with
me. Because you do. The Teenage Cancer Trust prevents this
happening because they are amazing. So,
I’m a TYA OAP, which also makes me laugh.
I am 'user friendly'. To look at me you would never know
that I was diagnosed with old man's cancer (chronic myeloid leukaemia) when I
was 22. And I am female. Making me a rare diagnosis. Which I must admit, I do
like. I'm a middle child- any excuse to talk about myself! I have and always
have had my hair. I'm not bloated from steroids. I don't have a Hickman line. I
just take a pill every day. And deal with all the shit that goes along side it
in the best way that I can. I do have an amazing therapist though who helps me
through it all. She’s also my
mother. No doubt against every ethical
rule in the book, but for me, it works.
Nothing better after a therapeutic sob to get a cuddle, to be embraced
as you were when a child and reassured and comforted. A kiss on the forehead to remind me that it
will all be ok. I still need that. Even though I am 30. My diagnosis in many ways catapulted me back
to being 5 years old again.
This accepted language is good at tugging on heart
strings - I get furious with charities for using bald 8 year olds or having
words like 'you can't save me but you may be able to save the next person
diagnosed'. I think that's dirty advertising to get money. And yes I know
that's it's this money that helps support families of those 8 year olds
currently in hospital on intravenous chemotherapy that I have never had. Or
funding research into drugs that may help stage 4 breast cancer. It just
doesn't help those still here. Still fighting.
Urgh. Helpless to help
those. Maybe that’s why I hate it all,
it makes me feel helpless. I am now a
therapist myself, a Naturopathic Physician.
I like to help people feel better.
To make them smile. And I can’t
with those photographed in the adverts.
But then. Maybe this language used is all about you. Not
about me. I am voicing something that I believe many going through treatment or
who are beyond it feel. Or maybe I'm just writing this as a survivor. Urgh.
Hate that. I am writing this as me. A 30 year old who walks around with enough
Leukaemic cells in her blood stream to mean that daily chemotherapy is
essential. But few enough that she looks normal and can basically live a normal
life. Just waiting to see how the fatigue is on the new chemotherapy. Drug
option number 4. Intolerant to the last 3. Last option. Let's hope this one is
better.
I am not a cancer survivor or someone who is wining or
won or fought or battled. I am simply living life the only way I know how to. I
responded to the drugs. I didn't need a bone marrow transplant in the end. I
didn't die. I shouldn't feel guilty because of this. And I do. Because of the
media friendly language.
