A while ago I mentioned that with myeloma you get a whole new set of significant dates that join your birthday, wedding anniversary, etc. One of mine was yesterday, 6 May. This was the date that I got my stem cells back during my stem cell transplant last year.
Now as you are aware, unless this is the first time you’ve ever read my blog, we didn’t get as much mileage out of that as anticipated. My paraprotine (M-spike) registering in blood tests on 31 December but not sufficiently to quantify at that point and becoming a much more measurable 15 by 14 February.
When I had my stem cells harvested and right up to my transplant my paraprotein level had been zero an ideal position to be in one would think.
Looking back would I have done anything differently? Would I even have had the transplant at that point in time? Yes and yes.
Yes, I would have had the transplant because it is was the best proven way to obtain a longer disease free progression. If I hadn’t we would certainly have been looking back and saying that the reason the myeloma had staged a comeback was because I hadn’t gone down the transplant route. Having done it we can at least say we gave it a go and it didn’t work for me.
Yes, I would have done things differently. I wouldn’t have gone back to work full time. Even though I worked only one five day week between the end of August and the beginning of February I was working 9.30 until 18:00 on the four days I did work with commitments on my day off. We got Buddy, which I don’t regret for a millisecond, but this added other things to do and I aimed to walk him twice a day. And I admit it I did feel overwhelmed at times. Then I put myself under pressure to do a handmade Christmas, which I have done in the past, but maybe it was too much in the circumstances. I also had other commitments that I tired to cram in as well.
By not giving in to the myeloma, by attempting to do everything I would have done before and trying to make up for not being able to exercise like I did, by not taking it easy maybe I allowed it to sneak through weakened defences when I got the stomach upset and ear infection.
I don’t know. I do however know that it’s a fine line between not letting it stop you living your life as much as you want to but yet not living it so much that it causes you harm.
Since being forced to take it easy during the two weeks in hospital and the lethargy that accompanies some of the treatments I have had very little bone pain. I know I have previously stated that I had no pain it was more discomfort and it was compared to how it had been but know I truly know what it is to be pain free. I wake up on my back some mornings not because the ‘discomfort’ has woke me up but just because it’s time to wake up.
It is hard to set yourself new limits, especially I think at an age when you shouldn’t have any, but having experienced life almost pain free (with the aid of paracetamol and codeine) and feeling better for doing less, it is worth it.