Friday, 22 September 2017

World CML Day

So what does this mean? Probably not a lot to most. Most don't know what CML is. Chronic Myeloid Leukaemia. The translocation and therefore genetic mutation of chromosome 9 and 22. They don't know why it happens. It's not a lifestyle cancer. It just happens. It's rare. Only 4,800 people live with it in the UK.  Because it no longer kills those diagnosed with it, it gets very little attention from the press or (most) charities who prefer people who look ill. Harsh but true.  Much better to have a photo of a bald person with lines going into them than someone like me.  Tugs on the heartstrings more.  Gets people to give money.  I get that.  It doesn’t stop it from fucking me off.  The photo is me today.  No makeup.  11 hours sleep.  Still got fucking massive bags under my eyes.  I don't look like a cancer patient do I. Way too much hair, eyebrows and eyelashes. I'm wearing one of my Bloodwise (go to bloodwise.org.uk and have a look.  They are such an AMAZINGcharityy. I heart them).

When I was diagnosed, over the phone, I hadn’t been feeling quite right, not ill, but not right.  Weight loss which for me was a massive bonus!  Down from a size 14-16 to an 8 in around 6 months. Fucking BRILLIANT!  Hair coming out in handfuls was a bit concerning but the thing that made me go to the doctor, or rather friends insisting I go, was nearly fainting twice in a week.  I don’t faint.  I was gearing up for a collapse.  Not surprising when I had 112,000 detectable Leukaemic cells in that first blood test and my white cell count was something like 700.  Normal range is 4-10.  They – the hospital, were astounded I was walking, talking and fully functioning.  It also explained the exhaustion and complete lack of concentration I’d had for the couple of weeks leading up to that phone call.  I could also feel my spleen...  Thinking about it.  My body is pretty amazing in how resilient it is and kept going even though I was very close to being critically ill.  I was not far from the ‘blast phase’ which is very dangerous in CML and well.  I might not be here today if that had happened. It also explains why I was in my own room in hospital, not on a multibed ward.

I’ve been through a lot of shit over the last 10 and a half years with my body, but you know what, it hasn’t really ever let me down.  I’ve not managed to get to that magic 0.000% with the Leukaemic rate to see if coming off treatment is a possibility.  Very few ever do.  A transplant would mean that would happen.

My counts are now normal with my white cells, and my leukaemic rate is now 0.03% and I have around 23 detectable Leukaemic cells in the blood test they do. 

It's a funny day today. I didn't know it existed until a year or so ago. Having said that. Time is a strange concept at the moment and what feels like yesterday could have been a year ago. So maybe I have known about it for longer. Today might be my last CML day as a CML patient. If I do have the stem cell transplant, this time next year I would be cancer free. No longer have Leukaemia in my blood. No longer be on the drug regimen that has impacted on my life so much over the last 6 years making my life pretty miserable. I think the first 4 years, actually no, most of the first year was horrific. I think I’ve had 3 years of it all being out of the last 10 and a half, but I’m not entirely sure.  Hard to remember.

But. 

It's ‘only’ a been pill. Oral chemotherapy. It could be worse. I'm 'lucky' I have an 'easy' cancer. And I might be risking my life in order to no longer have it because it's such a walk in the park… 

This wasn't meant to be a rant. I don't hate my cancer. I don't think 'fuck you cancer' as so many do. I can't and won't hate myself. When it's in your blood, that's what you would have to do. Hate all of you as your blood goes everywhere.  And I absolutely refuse to think about myself in that way. Side effects of treatment have been pretty shitty, yes, but that's not the cancer, my cancer. That's the treatment. 

I have met so many amazing people. I have done so many amazing things. I have been given a voice since my diagnosis and all of this I would NEVER change. 

I do wish I wasn't a 'sensitive responder'. That I could fully live my life AND take the daily treatment. Which is now a weekly injection as the oral chemo annihilated me too much. All of them. I tried all 5 options available. A couple of them twice. The problem is that there isn't much funding given to CML anymore because of these amazing pills that basically save everyone now, when pretty much everyone used to die. Another problem with these amazing new (potentially very toxic) treatments for Leukaemia that have been in the press so much recently is that they work on proteins on the cell surface of the cancer cells. With CML everything is on the inside of the cell so immunotherapy etc hasn't worked. 

I thought I was going to have a bit of a focus with this post today. To try and raise some awareness of CML. When you look fine, and in my case so much better than I feel, but aren't always. And if today is my last national CML day as an active CML patient. Well. That's pretty huge. It's my tenth one this year. Maybe it's a good number to end on. Think I've had enough of living with CML in all honesty. I think I now just want to live. 

With love and hope,

XXX

1 comment:

  1. What can I say but, I'm with you on all of this. Your rant made me smile because I thought my god, i wish you hadn't ever had to spend your twenties like you have but fuck it, at least we've both had our twenties and for some of them I think, been able to just get on and forget our illnesses.
    I don't have CML, being honest with you I didn't know what it was as just as you point out, the press don't do 'invisible' cancer. (Talking from a brain tumour patient perspective, full head of hair from age 25 to 33 here).
    Also diagnosed over the phone-what is with that? But I cannot complain about my level of care since! Also on oral chemo, which my body or more specifically my blood counts have just said 'NO NO more' to.
    Enough about me. Your post was an epic rant, the end, just wanting to live, I hear you, my god I hear you.

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