Tuesday, 15 March 2011

Living in Oz

It is extremely conceited of me, but I like to think that on the whole I have been like Glinda, a good witch. I certainly tried to do everything I could to help and support Mike during his treatment.
Today however I feel more like the wicked witch.

Mike has gone off to the hospital to have his Hb checked and I have stayed at home. It is the first time I have voluntarily not gone to the hospital with him. I do feel guilty, but in reality, what is the point of me sitting there for hours, only for us to be told the same thing as three weeks ago? I do worry about the fact he feels he needs a transfusion yet again, it is only two weeks since his last one. Does it mean his SCT was a failure? Are we about to start the roller-coaster ride of treatment again? May be those worries are the very reason I chose not to go today. If when we see SB in two weeks time he tells us Mike has got to go back treatment, we're both going to be spending a lot more time back at NX.

I'm sure some of you will understand that I need some me time before that happens. I love him dearly, but I have put certain areas of my life on hold. We drive when Mike doesn't feel up to walking, take lifts instead of stairs. My health and fitness have both suffered and I'm just starting to take control of them again. I need more time to build myself up both physically and emotionally. For those times when it suits him, I know Mike is seriously ill and for those times when he is feeling great, together we will conqueor the world.


  1. You are absolutely doing the right thing. I have to say that because it is the kind of thing I do myself! ;)
    But seriously, I caught myself singing in the car this morning and thought "What the hell are you so happy about? Your darling husband is seriously ill on the Drug of Last Resort!" and then I thought "Yes, but he had a good night last night and you can do no more today, so drive to work, stagger across the cobbles in your ridiculous new shoes and just enjoy the break from worrying!"

  2. Yes, you have to take care of you so you can take care of Mike - but ultimately, you have to take care of you, because on this horrible roller-coaster ride, if you don't hang on tightly, there is no one to hang on to you and you will fall off. Sorry to be so blunt, sounding like the Wicked Witch of the West or her sister, but there it is.

    No one is going to judge you for what you have to do to survive this, to be able to conquer the world with your beloved. Please don't you judge yourself, either.

    Also, sometimes the transfusions are just a stopgap measure until the new cells can take over the task of generating new blood cells on their own... I am intending this is so for Mike.

  3. Yeah this caregiver stuff certainly gives us a beating. You do have to "save yourself" sometimes when you realize you're kind of nearing the edge of your sanity.(I've teetered on that edge MANY times in these last 4 years.)
    Tim had a lot of trouble with his blood counts when he had his transplant. He needed neupogen shots even after he was realeased and a Aranesp
    shot for his red blood cells too. In his case, there was a mistake made with his stem cells and he got short changed on them. It is more common than I ever knew though for some stem cells to die off in the freezing, thawing and engrafting process and lets hope that is what Mike is dealing with. They eventually recover and repopulate their own marrow but it takes time.

  4. B has no qualms about abandoning me at the hospital - well Uncle Ray can take you, the neighbours will pick you up anytime - I however draw the line at clinic appts. He's tried that twice now but I insist he accompanies me - and it has nothing to do with him having to get up early on a Friday and then sit for hours in the waiting room! ;D