Saturday, 27 May 2017

Passing the 11+

Today is +11. I am back from the hospital and can report that Mike was a bit brighter today. His blood pressure is still far too low, he has an infection that could still see him off and he still isn't eating, but through the codeine cloud of nonsensical mutterings Mike was definitely brighter. We had large ducks on bicycles, hairs growing out of the wall and children standing with guns. 

So why when I got home did I burst into tears and sob for half an hour? I'd like to tell you all it was tears of joy or relief, but it wasn't. I cried because there is a pretty good chance that at some point in the next five years I will have to go through the same grief that I have felt over the last few days for real. I don't want to have to keep being told I might lose him, for one day I know I will. I don't want him to die, of course I don't, but the niggling "threat" becomes unbearable. Every bout of pneumonia has a risk of sepsis (I hadn't really understood sepsis until now), every infection a ticking time bomb. My heart can't stand the Russian roulette that myeloma creates, and yet I have no choice. I have to stand by and watch and feel it all. I sobbed for all the lost years of innocent living that "normal" couples have. 

I will leave the rest of my thought processes to your own imagination. I feel so awful.

Friday, 26 May 2017

Health Warning - A bit sad.

I have to warn you all that this is a rather sad post, so if you are feeling delicate please click off. 

I have warned you.

Well if you insist.

Mike 2004.

Yesterday I arrived at the hospital to discover Mike had taken a real turn for the worse. His blood pressure was dangerously low and he has neutropenic sepsis. The consultant from ITU had been down and decided it was best if he was moved as they had more one to one care and drugs that would temporarily raise his blood pressure. Mike told me all this himself, along with the prognosis of what would happen if his heart stopped or his breathing became difficult, in both cases the consultant had said with so many things already not working, there would be no point in either ventilating or performing CPU. You won't need me to tell you how I reacted. Later when Mike was in ITU the same consultant, a very nice man who obviously believes in not sugar coating things, something I actually appreciate more than "let's wait and see", repeated what he had said to Mike. The resulting effect was the same as first time. 

Mike is pretty much the same this morning, it is a waiting game now to see if his stem cells start working and if they do whether they help him fight back from the unknown infection that threatens to kill him. Last night he asked me to make sure this is played at his funeral (tissues at the ready):

It is our song. Mike sang it to me over the phone while he was at the karaoke, after only a few weeks of knowing each other. I think that is when I fell head over heels in love with him. I cried then, I cry every time I hear it. It will now forever more make me cry. 

Wednesday, 24 May 2017

A week on day +8

Well a week has passed and nothing much has changed other than Mike's blood numbers. They have taken the expected nosedive and have yet to make any improvement. Mike hasn't been able to keep anything down for a week now. There seems to be little anyone can do, the hospital certainly don't seem to be bothering to try. Mike is all alone in a room by himself, I have tried to get to see him most days since last Tuesday, but my stay is limited to just a few hours, the travelling to and from takes around four hours if I have to use public transport, and I can't always get a dog sitter. I can't get to see him today, my plans had to be changed at the last minute. It is all so frustrating.

It was around day 8 last time that Mike truly went downhill, I'm scared that when I visit tomorrow he'll be even worse than he was yesterday. Well meaning people tell me not to worry, that they will be taking good care of him and can't we Skype or talk on the phone. Mike is in no fit state to talk to anyone. He doesn't open his eyes while I am there, I question if he even really knows I visit. 

There's lots of cheer leading from people on the sidelines, telling me it will all be forgotten in a few weeks / months and Mike will soon be back to normal. They forget that our normal is dialysis five days a week and there is very little joy to be had in that. 

I'm not a quitter, so I'm not going to pack my bags and leave him to it, but I do find myself feeling unloved and unappreciated as a wife, I'm just the live in carer these days. 😢😭

Tuesday, 16 May 2017

Here we go.

Those readers who know Mike and I on Facebook will already know that late on Saturday afternoon Mike got a call from Heartlands hospital saying they had a bed. It wasn't our first choice of hospital, but as Mike's numbers were steadily rising and there was little hope of a bed at the QE we had little choice. The biggest problem is how inaccessible it is unless you happen to live that side of Birmingham. We knew that I would only be able to visit maybe once or twice a week rather than every day. Still we put on brave faces and managed to get through Sunday, and then yesterday I visited and sat there as they gave him the melphalan. I left Mike in good spirits and planned to keep in touch via messages on our phones and the occasional phone call until Thursday when I would visit again. We both knew it would be the last chance to have a reasonable conversation before his counts bottomed out and he became ill.

What we hadn't planned on was his reaction and accompanying infection. By the early hour Mike was feeling very poorly with nausea and a high temperature. By the time he had eaten breakfast and sent me a good morning the nausea had become full blown sickness. The took him off to dialysis and that is the last I heard from him. It seems the radio silence has started far earlier than we had hoped and all I can do is sit here and cross my fingers that they manage to get the infection under control and that the stem cells he is due to be having as we speak do their job. 

I have been a blubbering wreck 10 o'clock this morning.  I thought after the last time we knew what to expect, I was wrong. 😭

UPDATE: At 19:30 today Mike was taken to ITU. Hold tight it's going to be a bumpy ride.