Tuesday, 11 October 2016

Power of persuasion

I thought I would share with you all how the last week has gone. Last Tuesday and Wednesday passed without event. There was the usual long wait on Tuesday for Mike's treatment to make it to the ward, but that really is the norm I'm afraid. The fun didn't start until Thursday.

When we saw P.M last Monday she had asked Mike to make sure he arranged to have a line fitted that was suitable for dialysis during his SCT holiday. We know that a line can be an infection risk, but given the amount of blood that leaks around the needles when Mike's platelets are 65 or below, we had been extremely worried about what would happen when his platelets hit rock bottom. When P.M. told us about the line we were very relieved. 

On Thursday morning I took a call from the transplant nurse. The line had been vetoed by the renal team at the QE, Mike had GOT to use his fistula. At the time of calling Mike was sitting waiting for his access sites to stop bleeding, so I had to relay what had been said. Bearing in mind that Mike had been leaking blood for three and a half hours of dialysis, Mike hit the roof. Once we'd got him patched up he was straight off to see our renal nurses, the nurses on the dialysis unit and then home to call the QE. He spoke to anyone and everyone, whether they wanted to listen or not. Eventually a doctor on the renal team said he would look into it (he couldn't work out how Mike had got his number, Mike had actually been passed around and eventually been transferred to him). 

On Friday morning we got another call from the transplant nurse who seemed a bit surprised at the number of emails and phone calls that had taken place in 24 hours...... She told us the QE had changed their mind on this occasion and that Mike would be allowed to have a line, that the renal nurses would be going up to the haematology ward to train the nurses in dialysis hygiene (don't ask why they don't already use proper hygiene!) and point out that "protocol" had been overridden. 

Mike (and me) are over the moon. 

13 weeks to go.

Tuesday, 4 October 2016

The countdown begins.

Hello again. Long time no see. I had hoped that when Mike restarted treatment he would continue to update you all, he obviously didn't :)

Today we start cycle 5 of his VCD treatment. The last four have passed pretty much without much to say, apart from one case of pneumonia and low platelets that according to "protocol" are not low enough to warrant a transfusion, but which are low enough that, while on the dialysis machine, the needles have a constant trickle of blood from around them. Well it's only for four hours! 

Yesterday we were given the provisional date for Mike's second SCT, get your diaries out and pencil in January 11th. The actual event depends on Mike's numbers having come down enough, there was a blip due to the break in treatment due to the pneumonia, which had the docs reaching for an alternative. Luckily the Velcade seems to be still working. Mike was asked if he would prefer before Christmas, no thank you was his reply. Everything seems to be the same as last time, the timetable hasn't changed in six years. I wish I could say the same.

This time I have no humour to add to the proceedings. I am in a permanent state of depression and anxiety. I will however try and keep you all entertained or at least informed. 

14 weeks to go......