Sunday, 20 September 2015

Five Years

It has been five years since I was diagnosed with Chronic Myeloid Leukaemia (CML)

I was diagnosed in September 2010.

It was a complete shock - I have talked about that here.

In fact I have talked about it off and on for years. Living with a chronic disease isn't always easy, you need to get 'stuff' off your chest.

Mostly people forget I have anything wrong with me, which is brilliant because the last thing I want or need is people feeling sorry for me.

I would, occasionally like them to remember that I can't try the next fad diet - or take strange vitamins and minerals with out checking with my doctor first.

I can't run or walk quickly to things, as I do get breathless because of the anemia which reduces the amount of red blood cells in my blood, this is caused by the drug that keeps me alive - Dasatanib.

My CML is now undetectable in my blood and has been for some time. This is amazing because in principle I am in full remission, but unlike other cancers, I am not cured nor am I likely to be, there is no cure (yet). So it is always there, in the back of my mind, could I get sick again?

The Dasatanib is a second generation Leukaemia drug which is awesome. The side effects, that I have been affected by are; headaches, this improved after a few months, nausea, I still get that off and on, anemia, fluid retention (I ended up reducing my dosage as I swelled up all over the place....not pretty), fatigue (which at times can be quite crippling) and bone and muscle aches.

However, I am so grateful that I haven't had to have traditional chemo or bone marrow transplants, which are both grueling and not always successful.

There is a part of me that would love to come off my tablets for 6 months and find out exactly which aches and pains are age related and which are infact because of the Dasatinib.

My emotions are always mixed when I talk about this, I am lucky, lucky to live now, 10 -15 years ago my chances of survival were significantly reduced, see all the lovely stats below for more info - you know how much I love a stat!

But, I am not lucky, if I was lucky I wouldn't have got the disease in the first place, I wouldn't have been one of the 15 women around my age in the UK diagnosed every year, and honestly, I resent that.

For the first two to three years I got panic attacks anytime I did anything outside the norm. Like when I went out for a drink with friends or visiting places I wasn't familiar with. After some counselling and serious naval gazing, I realised I felt fragile, I was no longer indestructible. I could die.

Now, at five years, I suppose, I am more pragmatic, I could get run over by a bus, or fall down the stairs and break my ankle (which I did) See here.

Now, I am feeling more fiesty, I want everyone to have what I have had, so I have been and will remain dry for September for Cancer Research UK - Please sponsor me here, you have no idea what a big thing this is for me..em...hello...my name is Jane and I am an alcho...you get the drift.

I try and do the MacMillan Coffee morning every year (that's on the 25th September - next Friday, just saying, if you want to sell some cakes at work, Macmillan will be very pleased with you)

And, coincidently, it's Bloodwise month, Leukaemia and Lymphoma research re-branded in June this year and became Bloodwise, and they are trying to raise awareness of blood cancers, hopefully you have seen the posters. Next month for Macmillan you can go sober for October, if you are inspired by my efforts. Its not as easy as it sounds.

And finally, one last thing. Dasatinib has really saved my life, it is now on a list of drugs that the government want to cut, as I have been on it's clinical trial I am not sure if I will be able to continue with it based on what the cuts mean. This could mean a whole new situation for me and many like me (By the by it is affecting lots of drugs, not just blood cancer ones, but breast cancer as well) so if you want to sign the petition you can here.



So here's to another five years. Cheers (picks up imaginary drink and downs it in one!)

Statistics and Stuff (thanks to Cancer Research UK for the info)

About 8% of people diagnosed with Leukaemia in the UK have CML,

CML accounts for 0.2% of new cancer cases.

675 people were diagnosed with CML in the UK in 2011 of which 273 were women. For women my age, there are about 15 cases diagnosed per year, it is more prolific as you get into your sixties.

CML was first diagnosed in 1960. Prior to that I can find no reference to diagnosis or prognosis.

Prior to 1983 around 15% of people diagnosed with CML survived for more than 8 years.

Between 1983 to 2000 prognosis improved to 42% to 65%.

From 2001 it has increased to about 87%

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