Saturday, 19 September 2015
You are lucky.
One of the first things my consultant said to me when we met on Monday 21st January 2007. I'm lucky to have the cancer that I have because I won't die from it and I can take a pill a day for the rest of my life which will make me feel better than I ever did before.
I cannot tell you how angry I am at that consultant for saying those things to me. Yes. It might have been what she believed and thought. But it has in many ways been anything but lucky for me over the last 8 and a half and bit years.
However. I am a walking contradiction because in many ways I am so lucky.
I have recently had to say goodbye to people because they haven't been as lucky as me. And I don't like saying that I have luck when they don't and didn't.
I don't know why some people respond to treatment or rather that treatment works for them. Because at the end of the day that's the reality. It's not down to how hard the person fights or battles. Fucking hideous terminology. It's if the treatment works or doesn't. People don't win or lose against cancer. The treatment either works or doesn't. People should say that the chemotherapy or radiotherapy or treatment is fighting and battling not the person. And if the treatment doesn't work. Then science has failed the person. Not the person has failed by dying after a cancer diagnosis.
So. Being lucky. Well. I have my hair. I don't look ill. I can basically get on with my life. But I don't want to be on these pills for the rest of my life.
Chronic fatigue. It's my invisible companion. Always there. Hovering. I never know when it will hit. I now know that if I do x y and z then I will regret it and should have only done x and y or many even just x. Should it be like that at 30? Maybe it is and because I have felt like this for so long I have a rose tinted idea of how my energy levels should be. Maybe they would be this shit anyway. I don't know.
I have worked my way through all 4 drug options that have been developed for CML. Sorry, I should always call it chemo. I think I confuse people when I say the chemo isn't working and they panic and think I've relapsed or something. I call the chemo I take 'the drugs' because it's more user friendly. It means I don't think that every time I take them it's chemo. It takes the edge off and doesn't mean that I think every day, I have cancer, I must now take chemotherapy. Because I don't want to be thinking like that all the time.
So there are 4 different chemotherapy pills that have been developed for the specific cancer I have. The first I was so unbelievable intolerant to. The second. I got worse and worse on. Feeling exhausted and depressed. The third I had to fast which was a fucking nightmare. And the fourth. My final hope which is why this feels like such a kick in the teeth because I wanted to feel so much better on it. And it fucks my liver up.
So the options. Take steroids to stop the reaction and start option 4 again and see what happens which I don't want to do. My liver was half way to cirrhosis. And this is my body saying it's really intolerant to the drugs. And everything I believe in goes again taking a pill to suppress a side effect of a pill.
Let my liver recover. Go back on drug number two. Get the leukaemic rate under control again (because I've spent 7 weeks off the drugs) and then lower the dose to a manageable yet still clinically effective level.
So at the moment I don't feel particularly lucky. And no. The pills don't make me feel better than ever. In a way I wish that I had felt ill before my diagnosis and then I wouldn't mind so much. But I didn't. I felt ok. And then all this shit was dumped on me.
It's just been a low few weeks. I will bounce back again I know.