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.

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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. 

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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.

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Another year bites the dust.

As another year comes to an end I thought I would contemplate the year that has gone. At the start of 2018 I gave up FB, I was tired of my own envy for other people’s lives. My friends all seemed have endless health for themselves and their family, plenty of time and money for holidays and adventures and generally seemed to be having good lives (I do know that the reality might not have been what they portrayed on FB.) I thought that without the envy I would be happier. Of course Mike is still on FB, and he would on occasion tell me what people were up to, so that didn’t help. I also realised that without FB I had very little contact with the outside world. Apart from my family and two very dear friends I have heard from no-one. Unless you count staff at the hospital or check-out staff at the supermarket I speak to no-one. I have been so lonely this year that I wonder if the shallowness of FB is worth rejoining. At least there, my screaming into the darkness is sometimes acknowledged. 

Mike’s health has not improved despite the chest drain. Yesterday I ordered a wheelchair so we can at least leave the house occasionally. He’s still a proud man, and I can see many arguments ensuing as a result. 

As for 2019, I’m scared. Scared of being totally alone. Scared of not knowing what I am to do when I am no longer caring for Mike. Scared of the unknown. 

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In brief.

The respite was short. One night in the hospital, 1.5 litres of “fluid” the colour of a gold beer taken from the pleural sac and two antibiotics to take. The first night out he slept like a baby, last night he managed six hours, which is good, except at 5 o’clock this morning his coughing woke me, he was then hungry, and he wanted a coffee, and then at 6 the granddaughter could be heard saying she was hungry (she slept here as her mom was out on her works Christmas do.)

So by half past six, I was up, I had made sausage sandwiches for the pair and on retrieving the plate, Mike was back asleep. He didn’t reawaken until nine.

I’m exhausted.

Merry Christmas everyone. 

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Mike is in the respiratory ward this evening. They want to do some investigations, once he has had some platelets. I am glad of the peace and quiet. The constant coughing and breathlessness has a dripping tap effect, it can send a person crazy over months and months.

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Top blowing.

Weeks of worry. Sleep deprivation. Unhelpful remarks. Too ill to help. Christmas preparations. Must be normal. Don’t tell people I’m not very well. Let’s pretend. No presents ready. Christmas Day menu. We’ve got to have. Too much food not yet bought. Final straw. Spilled drink. Toni playing. I shout at dog. “I’ll clean it up tomorrow.” I blow my top. Say things I shouldn’t. “That’ll make a change.” “Haven’t moved for months.” Sleep in separate rooms. Still not talking. Just keep walking.

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If I could have just 24 hours with the man I married I would happily give up the rest of time.

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Today I feel so alone. There is no-one to help with the caring. No-one to help with the day to day tasks. No-one to help with the Christmas preparations. No-one to talk to. 

If you are reading this, just say hi. 

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Why do things not turn out as expected?

When Mike and I met we were far from spring chickens, we would often talk lightheartedly about looking after each other in “old age”. That time has come rather sooner than expected. Mike and I imagined that we would be caring with good humour and pleasantness, the reality is very different. Mike is miserable and bitter (I know it is hard to be infirm and ill) without so much as a thank you if I do something he has asked, and a far worse mood ensues if I do something he hasn’t asked.  All of this adds to my woes, how do I maintain the expected positivity and humour when all I receive is negativity and bad temper? I don’t know how others do it. I’m ready to run and keep on running. Poor Toni never gets walked, I never get fresh air (unless you count the air I get walking between the car and the supermarket.). My brain is fried, I can’t remember a thing, and my body is struggling to cope with the simplest tasks.  I can’t settle down and read, or even relax in the bath. Even as I sit here at the computer I can hear his constant cough……

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