Monday, 5 June 2017

Is there no end? Day 20

I had a call from Mike yesterday. His mouth is still so sore that eating anything solid is still impossible. They are still feeding him through the tube and he is still having those lovely milkshakes. So far so good.

Mike also told me that they have moved him out of intensive care back to the ward where he has his own room and his own bathroom. This would be good, except he realised that he can't actually get out of bed, his leg muscles have wasted so badly that they will no longer take his weight. He can't walk or stand and needs physiotherapy. Yet another hurdle, something else to stop us ever getting back to some sort of normality. 

Please don't tell me it will all get better unless you can guarantee that he will be normal again by September. I'm so angry with the whole world right now. 😭😡

Saturday, 3 June 2017

The verge of adulthood day 18

It's nearly a week since I posted. I should have posted progress before but I couldn't find the time or brain space. For those who don't FB I will recap.

Sunday +12: Mike went backwards. 

Monday +13 Mike stuck backwards. Very frustrated wife questioning why, nurse (they rotate constantly) says he doesn't seem any different from when my colleague handed over. Luckily a few hours later a different colleague who had seen him Friday happened to pop in and couldn't believe how much worse he was. (Thank you. See I'm not crazy.)

Tuesday +14 Mike still in rut. One of the drugs they are giving him makes him hallucinate. Conversation has been impossible since he was taken to Intensive care. The only words out of his mouth have been random rubbish unconnected to what I have been saying, The icing on the cake is a call at midnight (so this is partly for Wednesday). Mike tells me to call the police and tell them the nurses are trying to murder him. 

Wednesday +15 Mike finally agrees to having a nasogastric tube. He hasn't kept anything down for fifteen days. I have a meltdown as I can't understand why Mike isn't improving, not even a tiny bit. 

Thursday +16 I manage to do something never before seen by the paramedics. Whilst simply walking along I manage to get a screw embedded in my foot. I did try to pull it out, no luck. The ambulance was called out by a passing stranger, much to my embarrassment. A trip to A&E was made and two hours later I was out and on my way, the super fast service due to the fact I told them I was actually on my way to Heartlands to see my hubby in Intensive Care. They couldn't have been more helpful and I very grateful. Now you would have thought I would have gone home (I only had one shoe by now) but no, I dutifully went off to see Mike. Cue another meltdown and a good telling off for Mike. I told him enough was enough and that if all I was going to visit was a sleepy, delusional  husband then I wasn't going to keep spending four hours a day travelling. 

Recreated accident

My poor foot!

Friday +17 Another delusional phone call first thing, Mike is convinced we have won some big court battle and can now afford to pay for private care. He has been trying to pull out his lines and feeding tube. I suggest he asks them to review his drugs as obviously something is sending him loopy. I don't visit, but in the afternoon Mike is taken down for dialysis on the proper machines. At 18:00 Mike calls to tell me he has managed to drink and keep down the special fortified milkshake they gave him. Finally a bit of progress.

So today is day 18+ the first day of adulthood. He was out of hospital last time round. Still at least we finally have signs that he is going to recover, cross your fingers he doesn't go backwards again. 

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.

Sunday, 30 April 2017

Quickie

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.