Sunday, 30 April 2017


Just a quick update. Another month gone. Still no bed. Dr S.B. has put Mike on a course of dexamethasone, 20 mg for four days followed by four days off. The hope is that the dex will manage to hold his disease progression at bay while we are waiting. We have a months course and Mike has just started his second pulse of four days on (oh joy!) 

An SCT is currently Mike's only available treatment, so it's a bit urgent. You wouldn't know it from the way the Q.E. hospital are talking, still number seven on the list, Mike was number seven nearly four weeks ago. If it wasn't for S.B. Mike would have given up all hope. 

I'll update if we get any further news. 

Thursday, 13 April 2017

I need a hero.

I feel so lost. Mike is still waiting for a bed, it seems Dr. S.B's urgency messages didn't get through to the powers that be at the QE. They are not in a rush. Mike has had enough. He is ready to tell them to forget all about the SCT. This morning he said he has gotten to the point of letting nature take its course. I don't know what I am supposed to say to him. If I "support" his decision I will be accused of being heartless at some point. If I disagree, then I am unsympathetic  as I don't know what his life is like. 

All this after weeks and months of optimism. When Mike has recovered from his SCT there is a slim chance of a kidney transplant. Mike was already making plans about what he would be able to do to get back to work. Lots of wonderful plans, none of which really involved me. Little old me would have to find her own way. Sitting at home looking after him whilst running a small eBay business would become me running a small eBay business alone. I should jump at the chance, but I know I would go crazy all alone day after day. 

I wish I had once known what I wanted to be when I grew up. I never had a clue, never had a vocation or a plan. Others knew and still know what they want from life. I just stumbled along. The jobs I have done in the past have always been to the best of my ability, but they were never professional in nature. No-one is knocking my door down saying please come and work for us. The obvious direction would of course be care work, but I have to question whether I really have the patience for it. Mike often "complains" about the way I do things and I get upset. Hardly the right way to be with a patient. 

No I need a hero. Someone to take me by the hand and lead me in the right direction. I need a miracle.