Wednesday, 22 March 2017

Time for a change

As you will all know already, this past year I have been miserable, really miserable. Mike has had enough. We argue constantly. "Misery likes company." 

So I have taken down my last two "negative" blog entries and I am now going to make an effort to only blog "positively" or at least more chirpily. I might still be miserable, but I won't be dragging you all down with me. 

We had an appointment about Mike's next holiday yesterday (SCT) and we have been given a date of April 4th. The transplant coordinator seems quite positive about the likelihood that there will be a bed, especially as Mike needs things to happen quite quickly as he couldn't tolerate the Revlimid.  

So it looks like April could be a busy month, seeds to sow and stem cells to grow. Stem cells and tomatoes. 

Saturday, 11 March 2017

Where to begin?

Where to begin?

The last few weeks have been awful. We just weren't prepared for the way Revlimid (lenalidomide) would affect Mike. Lots of other people we had read about seemed to still have a life, off on holidays going out and about, we assumed Mike would feel the same way he had on Velcade. We were so wrong. The first week of RCD seemed to go okay, then Mike developed a rash, the prophylactic antibiotic was blamed and stopped. The 5 mg daily dose of Revlimid was continued. The rash went and Mike developed a cough, not a chest infection, just a really annoying cough. By the end of the first cycle Mike's blood counts had plummeted. So much so, that it was agreed that the second cycle of RCD should be 5 mg every other day. Mike only managed a week. His Hb dropped to 71 (7.1) and his platelets at 54 meant that it took us 55 minutes to stop his dialysis site from bleeding, times that by two needles and you have a very long day. Eventually on Thursday they gave him two units of blood.

Mike still has the cough that plagues our sleep, still can't climb the stairs. My emotions are a complete mess. I go from angry that I have had to do everything around the house for eight weeks, then guilty because well Mike is ill, back to angry that he offers to help friends and family when he can't so much as lift a cup to help me, then selfish when I find myself wishing they would just take him into hospital for his SCT so I can get a break. 

I am fed-up of reading about other couples who have a "perfect" relationship despite illness, am I the only one who is sick of being nothing more than a carer, a slave, chief cook and bottle washer?  I miss being a lover, a friend, the other half of a couple who do things together.