Tuesday, 11 September 2012

2 Years on...

Warning - this post is not for the squeamish.

It's two years since I was diagnosed with Chronic Myeloid Leukaemia (CML), and I am still here.

Today I went for my yearly bone marrow biopsy, last year I had a panic attack just before they sedated me. This year they put the needle in quite a few times but I didn't have a panic attack, which was. er.. nice...

But today didn't go well. They couldn't get the needle where they wanted (despite trying repeatedly) so couldn't aspirate (not entirely sure what that means). So now, instead of going into the back of my hip, they are going to arrange another appointment with another doctor to try to do the bone marrow biopsy from my sternum. OMG. Seriously. OMG. The doctor's words when she told me this were 'you're not going to like this'.

Bone marrow biopsies are not nice. The doctors will numb the area where they put the needle in and then they put in one of these needles (below). I am not entirely sure which they use and how, but my husband says that one of the needles has a mini saw at the end and they put their full body weight on it to get through the bone.


The other thing I know is that the anesthetic and the sedative do not stop the pain when they get to the marrow. The advantage of the hip biopsy is that you can't see it. In my sternum, it will be right in front of me...holy s**t!

Today is my yearly reminder that I have this disease. Most of the time I forget about it and carry on. 

After two years, my family, friends and colleagues have stopped doing the head tilt and saying 'but really..how are you', I'm still here, I am well. I think they are starting to believe me. 

I take my 4 little pills every day, have my blood tested every 3 months and try to ignore the side effects, the breathlessness, the fatigue, the sweats, the pins and needles in my hands and the muscle aches. I largely have a normal life.

My eldest daughter thinks I am lazy, because she only see's me in the mornings when I get her ready for school, or after work when I am exhausted or at the weekends when I am getting my energy together for the week to come.

I can't get travel insurance which covers my disease, not even if I pay more. If I wanted to change jobs (which I don't) would anyone else employ me?

Today my husband and I are reminded that I am ill, that I need tests and procedures regularly. Yes, I'm lucky, lucky it isn't another type of cancer where I need the type of chemo where I throw up and my hair falls out. Yes, I'm lucky that they can probably keep my cancer at bay for many many years (with the tablets I take they can give me 13 years as that is as long as they have been around for, but the results are good). I'm lucky I don't have to have lumps cut out of me. I am lucky because 2 years on, I am still here. Ten years ago, there is a very reasonable chance I would be dead by now. 

But I am unlucky, CML most commonly happens to people over 60 (I found out when I was 42), it is more common in men. I have cancer. I would rather be healthy. I would like to feel confident that I will be around for my girls and my hubs in the years to come. 

Today, I am sore and uncomfortable and feel about a hundred years old. Tomorrow, I will wake up feeling like I have partied all night, with out the joy of having done anything.

I initially blogged about this here and I am a little disappointed in myself for the above as that initial post was way more upbeat. Then here when the reality of my disease was kicking in. 

Anyway, had a bit of a crap day, so apologies for the pity fest. 

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