Tricky times

The last few days have been a bit tricky. Mike ended his birthday by calling an ambulance as he couldn't breathe. He had already discovered that his HB had been 8.5 (85) the day before and he reasoned that was the cause of his problems. As it was almost midnight, Mike went off to the hospital alone. It took him over seven hours to convince them he needed a transfusion, but they eventually gave in. After the transfusion he was discharged and safely back in his own bed by Saturday evening.

Today he was due into the day case for his immunoglobulins so we were up at 3 a.m. to set up the dialysis machine and get the process over before the appointed time. I duly delivered him to day case on time and made the 20 minute walk home. It was while I was walking Toni that I got a call to say they were admitting him, his breathlessness was a real concern and his infection markers were up. I rushed over with his night clothes etc. only to find him on oxygen, arguing that he didn't want to die in hospital. 

I won't bore with you with all the back and forth discussions, needless to say  Mike is now on ward, but only after he got his DNR, the last thing he wants is to find himself with an infection on ICU, unable to say no more please. To be honest, every time he goes into hospital he catches something, he even got Norovirus when he went in for his bone marrow biopsy. Tomorrow they will give him platelets, and drain his chest again. The hope is that Mike will gain enough time to sort out the loose ends that are bothering him. 

Happy birthday to you.....

Tomorrow is Mike's birthday. His health will stop him celebrating as he once would have, but I will definitely be celebrating the day that my gorgeous husband was born. I can have a drink for us both!

Happy birthday darling. xxx

Mike aged 11

Maudlin moments

I am having a bad day. Even before Mike starting discussing his funeral plans I was emotional and tearful. I have been spending too much time looking at old photographs of Mike, photos taken just after we met, photos of holidays together, photos of our wedding. Time takes its toll on us all, but the it isn't just time that has stolen away his youthful appearance. Mike is a shadow of himself both physically and mentally. He no longer laughs the way he once did, he doesn't laugh at all. He no longer says he loves me, he can barely look at me these days. I can read the anger and frustration in his face, he has every right to be cross with life, I just wish that anger didn't spill over onto me. 

A question to you all. Should I continue to write this blog detailing the last few months or should I leave it unfinished?

Every cloud.

Yesterday Mike went off to have a bone marrow aspirate, Dr B. wants to check what is going on with his bone marrow, whether Mike now has the added benefit of MDS / myelodysplasia / myelodysplastic syndrom and also do some genetic testing on the sample. Mike wasn't looking forward to it, he's only had two before and both were really painful. When I went back to the room to collect him (with wheelchair in tow) he was happy to report that it hadn't been anywhere near as bad, the reason being that he has lost 20 kg since the last one and it is much easier to do on an almost skeletal body (I don't recommend drastic weight loss as a cure for painful BMB!)

Nothing else has changed, the blood he was given made very little difference, his lungs just aren't oxygenating the blood sufficiently, something that is clear to see during dialysis as the blood in the lines has gone from red to a very dark almost black red. We don't have any idea how to improve things, and as yet, nor have the doctors.

What can you say?

We went to see Dr. B. yesterday afternoon. As you would imagine he was surprised to see Mike being wheeled in by me, he had hoped the chest drain just before Christmas would have made Mike feel better. Mike's platelets had dropped again along with his red blood cells, Mike expressed his feelings that his body is shutting down, Dr. B. said let's wait and see if the respiratory man can find something to help. There are currently no answers, not ones that anyone wants to say or hear at least.

Tomorrow Mike is booked in for red blood and platelets, the hope being that they will relieve some of his symptoms until he sees the respiratory consultant the third week of January closely followed by another appointment with Dr. B. 

Happy New Year, 2019 is here.

The weather here is what you would expect from winter in England. The sky is overcast and the sun low in the sky behind the thick cloud. Certainly not a good day for taking photographs (well not for someone with very limited ability.) So instead I will simply share a photo of the local robin.

HAPPY NEW YEAR!