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. 

1 comment:

  1. Birdie said...
    Oh, Lorna. I have no words from my own experience but I saw what my dad went through. My mom was so ill. My dad had to do everything for her. When she had her colostomy she didn't even try to learn how to change the bag and got my dad to do it for her. Everything from gettting a bowl of cereal to huge parts of her needed care was done by him. It sounds awful but I think he was relieved when she died. We are given false ideals about life with a partner with a terminal or long term illness. It's so unfair to the 99% experiencing th reality. (I also see the reality eveyday in my job.). It is beyond exhausting. Anger. Resentment. Bitterness. Jealousy. Too name a few.
    My comment just published and I didn't mean it to.
    Reality is months or years of little sleep, ongoing doctors appointments and medications. Having to change bedsheets (and do the laundry) because of vomit or sweating (from medications) or urinary or fecal incontinence. Bathing, special meals. Care from brushing teeth to pericare.
    When I say my dad was relieved when my mom died I don't mean glad or happy. Part of it was relief that she was no longer in misery. Part of it relief that he could finally stop after 6 years of fighting. They were both tired. So very tired.