Good morning world! I bet you all thought that I was gone for good, leaving you all on the edge of your seats about Mike. I've been to the blog several times, meaning to update you all, but I didn't seem to be able to find the words and then as time passed I felt guilty and that only made it harder.
I'm here now though, so here we go. I won't bore you all with the details of events from where I left off, I'll quickly give you the bare bones.
When I left you all Mike was bed bound and awaiting physiotherapy. What a waste of time that was. The physiotherapists would do their rounds once a day, usually when Mike was down on dialysis, and as he wasn't in his room they wouldn't return until the following day. If he was in his room having come back from dialysis they would refuse to do physio as he had been on dialysis. Oh and to add insult to injury, they didn't come weekends. To to sum up, Mike did Monday, Wednesday and Friday dialysis, leaving Tuesday and Thursday for physio, if he was feeling up to it, which he didn't.
Eventually on 19th June Mike decided to simply discharge himself into my care. The hospital didn't want him to leave, he couldn't stand never mind climb the stairs or even get to the toilet. But Mike was determined and so somehow me and our friend Mike C. managed to get him home, lift him up the stairs and get him into bed. For two weeks I struggled lifting him out of bed, onto the toilet, off the toilet, in and out of his dialysis chair...... it took a month for him to have enough strength to use a frame to get himself up and down out of a chair. Hospital visits relied on a wheelchair.
Slowly Mike has regained enough muscle to be able to walk short distances. His blood figures are still not brilliant and half the time he is neutropenic, his platelets are still around 30 and he picks up infection after infection from the inevitable waiting at hospital appointments. Nearly six months on and he is really only as well as he was a month after the first stem cell. The "experts" keep saying "give it time", I swear the next time they say it I might just start screaming and not be able to stop! 😄
We have both been struggling with the relentless treatment regime, there is no escaping the dialysis and the last couple of months only heightened how life limiting it all is as we tried enjoying our holiday and then had our wonderful friends over from Australia for a month. 🙋(Quick wave to L & D!)
I have come to realise that I need the blog as an outlet for my frustration at / with my life, I know that I am currently suffering once more from a form of grief, the fact is I had assumed Mike would recover in the same way that he did after the last stem cell, that our life by now would be the same as it was two years ago, we'd have to do dialysis but there would still be days off and life would be sweet. Poor Mike just isn't able to get his body to recover, I don't know how to help and no matter how much he hates me for it, I just can't stop myself from being "negative" unable to see or imagine that life will be better in six, twelve or eighteen months time. As I told a friend recently who is struggling, grieving for a life we had expected but lost is similar to grieving for a loved one. The Mike I met and fell in love with has all but gone, and even though I still love the Mike I have now, I mourn the loss of the Mike who has gone.
Apologies to anyone I might offend in my attempt to express my feelings.