Sunday, 10 February 2019

February week two update.

Mike is pretty much the same, but I went down with a bad cold on Wednesday, which doesn't help when you are trying to take care of someone else almost 24/7. I am feeling slightly better today, the nose is still bunged up and I have a cough, but my energy levels are improved. 

We saw Dr. B. for the last time on Thursday, (that in itself deserves a separate entry), the results of the bone marrow aspirate showed that the cells that produce the platelets are reduced and that there is some dysplasia resulting in reduced red cell production too. The good news was that there is no myeloma, so it is merely the side effects of treatment that are causing Mike's ill health. In my opinion it is still ultimately the myeloma that has lead us to the situation we now find ourselves in. Without the harsh chemo and gruelling  second SCT Mike would still have a relatively health heart and lungs that worked. There is nothing to be done and no point in being bitter. So we are continuing to try and make the most of the time we still have, that's when Mike can stay awake long enough. :)

Sunday, 3 February 2019

February week one update.

I thought I would update the blog so everyone knows what's going on. Mike was only in hospital Monday night. They drained his chest on the Tuesday after which he decided he wanted to be at home. The doctors tried to argue with him, but the reality, whether we like it or not, is that the nursing staff just haven't the time or possibly inclination, to be constantly checking up on people. Mike doesn't like being left alone in a side room for eight hours at a time, unable to walk further than the bathroom and with nothing to occupy him other than four blank walls. No TV, no radio, a newspaper that he has finished reading. They couldn't say where the infection was, it wasn't his chest as that had been x-rayed, Mike reckons it was more to do with the eye infection he had been suffering from for a month. At home he is comfortable, gets fed when he asks, and has me running around after him. 

Amidst all the sadness however we do still have moments of laughter. On Friday Mike went to see a funeral director to get a quote and begin to sort out what he wants. While we were sitting there Mike said that the one thing he regretted was not being able to get to Australia. The lady said that it was possible, if I take his ashes to her and get them officially sealed, I will be given special paperwork which will allow them to be taken through customs. I can take him with me. So at some point we will be going to Australia, with Mike in my luggage, that's one way to save on airfares! Mike says I must take photos of him while I'm there. 

Monday, 28 January 2019

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. 

Thursday, 24 January 2019

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

Wednesday, 23 January 2019

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?

Wednesday, 16 January 2019

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.

Tuesday, 8 January 2019

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.