Wednesday, 21 March 2018

Words for MPs

I have lived with blood Cancer and been on oral chemotherapy every day since I was 22. That’s 11 years 2 months and one day.  I will live with it for the rest of my life. Nearly feinting twice in a week led to a blood test on Friday 19th January 2007, in the morning, and that night, a phone call from the Western General in Edinburgh and enough information given to me to work out they thought I had cancer to get me to  go to the hospital, as I wanted to call  my parents who were over 400 miles away and tell them I had cancer, before I went in, rather than a stranger from the hospital do it.  I was in my third year reading History of Art.

Chronic myeloid leukaemia. Old man’s cancer. To be female with it and so young is rare. Daily oral chemotherapy keeps me in remission. Keeps me alive. Causes sever chronic fatigue. So much so that a stem cell transplant has been offered for quality of life reasons.  I am yet to make that decision.  In the mean time I am at the hospital fortnightly trying different drugs, when they are granted rather than denied, and different dosages to see which lets me at least try to live my life normally.

The main problem about living with a blood cancer and having my hair is that no one gets it. So much of the ‘normal’ cancer care and ‘normal’ treatments don’t apply. As a chronic cancer patient I fall through the gaps in so many places. I have never, for example, had an HNA – they didn’t exist when I was diagnosed, or filled out the national Cancer survey. And so many surveys around cancer simply don’t apply to chronic blood cancers.

When I was told about the Cancer recovery programme by Bloodwise and mentioned it to my consultant we both thought how great it sounds. Yet I am not eligible. She knows nothing about it. I will at this rate never come off treatment. I will never be cured. Very clever and amazing research has developed these magical chemotherapy pills that yes, have saved my life, but because I am a sensitive responder, so young compared to the majority of my clinic (in Edinburgh where I was diagnosed I called my clinic gods waiting Room), being exhausted all the time is an issue. I need the same amount of sleep as a toddler, between 10-12 hours just to get through the day, that doesn’t include the evening!  And that’s just not realistic when trying to run a business and have a ‘normal’ life at 33. So I don’t.  I either work or see friends, I can’t do both.  And the weekend is mainly sofa based to rest and recover from the week so I can do it all over again.  So my social life is basically non-existent. Due to these clever pills that for so many are ok and for those that aren’t, we learn to life with side effects and try to manage them the best we can, it’s almost like ‘box ticked’ with treatment and care. Don’t get me wrong, there is new research being done but it’s years from being in people and not mice. My current consultant is amazing, and I’ve told her she can never retire! I genuinely don’t know what I would do without her. And she does her best to think of ways to let me live my life. But I don’t. Fortnightly hospital appointments after 11 years is very unusual. Still trying to find the right drugs that I am ok on. For people like me, who look fine, who aren’t in -patients, aren’t on intravenous chemo or radiotherapy who don’t fulfil the ‘correct cancer patient criteria’ can really struggle with life. And it’s for people like me who in a way need support more than others as we don’t meet the criteria for other help available. We are too well for the criteria on the forms and our answers to questions aren’t right as they don’t take into consideration what it’s like to live with a chronic blood cancer.

I get out bed every day because I refuse to give in.  I am exhausted before I get out of bed every day.  Every day is a mental battle get things done.  Living with an invisible illness like chronic myeloid leukaemia has helped make me, me.  And I wouldn’t change that for anything.  I would however, like to change the side-effects of treatment and to have an end date in site.  I would like to no longer be a blood cancer patient without having to risk my life with a stem cell transplant.  I ask you today from the bottom of my heart to help get my message back to the decision makers.  To let them know that it’s not just the sexy cancers like Breast that need all the focus.  It’s those that no one knows about.  Like CML . That never go away and are never cured.

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