I was diagnosed with CML 18 months ago after an extended period of feeling extremely unwell. I had an enormous spleen (23cm), I was in pain and hardly eating anything because I literally couldn’t fit anything in. I was lethargic, short of breath and I was sleeping a lot. From memory my wbc was 375,000 and I was considered high risk.
So the reason I let it get so bad is I have a severe needle phobia and a general fear of all things medical. My haematologist is a very patient but frustrated doctor because I can’t be tested. No one is willing to put me to sleep to take blood. The two blood tests I’ve had were unbearably traumatic and it gets worse each time.
On top of that, unfortunately I’m extremely sensitive to medication and I’ve managed to get most of the side effects on three different TKIs. As well as debilitating headaches, fatigue, bone pain, muscle cramps, nausea, diarrhoea etc, etc, I was suicidal on Dasatinib, deeply depressed on Imatinib, and had the worst anxiety on Nilotinib to the point of crying and sobbing nearly all the time. Before all of these drugs I was an emotionally stable person (as long as I stayed away from doctors and needles!) and when I take a break from the drugs I return to an emotionally stable place in spite of my fear that CML is going to take me from my beautiful family.
18 months on I’ve hit a wall. I feel crushed by the weight of it all. I have stopped taking tki’s to clear my head, get some space and take some big deep breaths. Words cannot describe the relief of feeling like me again. My kids are enjoying having an engaged mother again but my husband is understandably worried.
I feel completely isolated in this journey. My friends and family have found a new rhythm to life while I continue to live this nightmare. I don’t really have any questions but would welcome any words of advice or stories of those with similar challenges. I guess I’d like to know I am not alone but I have grave fears that I am.
It has taken a lot of courage to post this so please be kind.