After getting over my initial shock at being a couple of years ago, I’ve never really thought about the implications of living with a chronic illness. For the most part I feel well, with only minor side effects from my medication. I don’t need to do a lot to manage my illness apart from take my daily medication, have the occasional blood tests and even more occasional bone marrow biopsies.
Of course there are issues with long term use of any medication. As the current treatment for CML is under 10 years old there is no data showing very long term side effects. The front line treatment manages the disease, but doesn’t cure it, so it needs to be continued indefinitely. However, I don’t think too much about those issues. Data is showing so far that side effects tend to decrease with time on the drug (although whether that is a continuous trend is not known). Besides, as I do not have a compatible bone marrow match anywhere in the world (at this stage, the search is continuing) I’m not eligible for a bone marrow transplant. And a transplant comes with a whole other bag of issues. So I have no choice but to keep taking my meds.
Over the last couple of weeks I’ve begun to realise other implications of living with a chronic illness. It seems I’ve moved to a new chapter in the diagnostic handbook. Now when I go to my GP instead of being in the category of
This is probably such and such. It could be something else, but the statistics say it is very unlikely to be. So we’ll treat it as such and such
I now get
This is probably such and such. But because of your CML we’d better run a few tests just to make sure it’s not something else
I’m beginning to cultivate a growing list of specialists and appointments. I’m finding it a little difficult to keep track of everything at the moment. Yesterday while at Little Mermaid’s swimming lesson I received a call to let me know that Mr Russell had a cancellation at 3:15 that afternoon. Would I like to take the appointment? I couldn’t remember which specialist Mr Russell was or what I needed to do for him before I went. I was trying to think of babysitters while I was talking on the phone (making no sense at all I might add). It was all a bit fuddled.
Then at the appointment, how much information do they need to know? Do they need to know about the other specialists I’m seeing, the drug side effects I’m having, anything else? My problem is that unless the doctor asks me something specific, I tend not to relate one thing to another and don’t think to tell them about it.
I’m not really sure of the best way to manage this. Perhaps I need to create a little dossier to carry around with me – or is that going a bit overboard?
So many questions! If you have some suggestions I’d love to hear them…please.