Day +15
The last two weeks have been tough.
I knew of most of the risks of an STC, but had no idea how that would unfold. But whatever the risks, they outweighed the risks of not having one. I had a moderate heart stenosis (thickening of a valve) that was discovered during examinations for the STC. Other than that I was clinically fit.
The first problem I had was a chest infection. It started with a pain in the chest in the night.After an ECG and painkillers it settled, and they put me on a course of antibiiotics for a few days and it was cleared up. This was just after the transplant when I had no immune system at all.
The second problem was I was starting to accumulate fluid. I gained 2 litres in one day, and my weight went up 9 Kilos in a few days. I had a liver scan that showed some problems, and given diuretics to reduce fluid. A special drug is being given three times a day to tackle the liver problem.
The third problem was one evening my heart rate went high on the regular observations. An ECG showed atrial fibrillation – fast irregular heart beat. A Beta blocker seemed to resove that.
Not all these happen in an STC. The point is, the staff are ready and waiting to respond swiftly, calmly and responsibly.
Hair
Well, it’s gone! It started to fall off yesterday, and by the end of the day it made sense to get rid of it all. I expected it, and the beard has stayed so far. They say it can come back curly and a different colour – red and curly sounds good.
Dietician
I’ve had two visits from dietician’s who encourage me to eat more of the terrible stuff they serve each day. My wife now brings me in an M&S meal and some smoothies. Fortunately, they haven’t worked out how to make rice crispies inedible.
Walking
I’m now allowed out of the ward room wearing a mask – neutrophils in a good place. Yesterday I did two return lengths of the ward corridor. Today I have done 3. I feel a lot more alert today.
Day +16
I managed to walk from my room to the ward entrance this morning. There I found a comfy sofa – bliss. Then back. 100 metres is about my range right now. The brain fog is slowly lifting. My weight is down to 84Kg.
The critical thing now is my liver and kidney function returning to normal. I’m still on a drip for over 12 hours a day as the drug for my liver can only be administered that way. Next clinical review will be Tuesday.
Day +17
This morning I managed a 15 minute wander around the ward corridors. This is the most exercise I have had since I came in. I needed a few minutes rest before I could have a shower, then another few minutes before I ventured out to buy a coffee and pastry. The sense of freedom from this is amazing.
Later my daughter visited and I managed another trip to the cafe – twice in a day. I had the most delicious fruit and granola compote. Now I’m pretty tired.
I move from alertness to tiredness very quickly, but I back off as soon as it is starting to feel too much. Each day it will get easier as long as I don’t push too hard.
Day +18
Today’s delicacy was a hot, toasted currant teacake with lashings of butter and a hot coffee.
I managed three trips out of the ward, for a drink or a snack. It isn’t far, but it is just far enough. I’m slowly pushing the envelope but not overtrying.
I’m still sleeping over 12 hours a day, but feeling more rested in between. Concentration is slowly returning though reading a book or watching anything demanding is a bit much yet.
Day +19
Today’s delight was a M&S Katsu Chicken Salad for lunch.
I’m in a steady place now. The doctors are pleased with my progress. I’m not needing transfusions of blood products to get by. Platelets and Neutrophils are doing well. Red blood cells are lagging behind as expected, but I seem to be refreshing them at the rate they run out. As the graft continues to grow, I should see that level grow back to normal.
I’m on a drug that has another week to run, and unfortunately it is 4 x 2 hour infusions a day, so I am still hooked up to Flo most of the day. Other drugs are being moved to oral.
Now i am adjusting to the regularity, and I am getting to know staff. Home does not seem too distant now.
Day +20
A young man brought tears to my eyes this morning.
He did my regular morning blood pressure and temperature. I thanked him by name, and he was surprised I remembered his name. His accent suggests he grew up in Africa, and he is very formal and business like, not very chatty.
Ten or so days ago, when I was at my weakest and most vulnerable he cleaned me up a couple of times. He said he was so happy I was looking well. When I was sick and helping me he said he was looking after his father and his reward was seeing me get better.
All the staff here are kind and compassionate. I am being cared for by a team of angels.
Day +21
Good news today. All the numbers are going in the right direction, and I can go home in 6 days time.
My liver reacted to the chemotherapy and the high number of infusions. I could not clear the fluid, and I put on 10Kg in fluid which made me quite poorly. That has all gone now. I need to continue the drug that resolved it for 21 days, but when that is complete I should be ok to go home.
My neutrophils, the white cells that are the first line of immune defence, are now in the healthy range. My platelets that were 6 when I came in are now 97 and increasing by the day – they are part of the clotting process and why I started all this with a nosebleed. My haemoglobin is 78, but has stabilised there, so I am still anaemic, but red cells take longer to recover. At least it looks like I no longer need transfusions which had become weekly.
I can’t express how relieved and pleased I am.
Day +22
A treat this morning. My daughter was planning to visit later (visiting is afternoon only), but she suggested breakfast instead. So a breakfast wrap and coffee at 10.00 am. I was off the ward for nearly 3 hours. My energy and concentration is coming back slowly. I feel quite slow and weak walking, but that is as much having been bedbound for a long time as it is anaemia – it will come back as I gently push the envelope, and I can manage a couple of hundred metres easily. Doctor reports steady numbers on blood results.
Day +23
For the first time in over 30 years I have gone an extended period without a daily meditation.
I expected, when I came in, to be able to continue my daily meditation practice. Three days in it was evident I could not. Although I am in an isolation ward, the traffic through the ward is endless, and as the treatment progressed it became impossible to find a quiet enough time.Then as the treatment progressed further, my concentration went, and so meditation was not going to work. If I tried, I just fell asleep.
The other day, as I was walking around for some exercise, I found the faith centre. So, this morning I made my way there, and sat in the quiet room by myself, and settled down to practice. My concentration is returning. Now I have a space to practice, I shall try get a meditation in each day for my final few days.
(There is a blog to be written on not practicing, but that is for another day).
Day +24
There’s a sense of just waiting now until I can go home.
I managed another meditation, a little longer today. I can feel some of the tension of the last few weeks unwinding. I don’t think I will get back to daily practice until I am home, but that is not long now.
Day +25
Consultant confirmed Wednesday as the discharge day. Blood counts are all in good order. It will be a few weeks before the anaemia resolves, but I appear not to need transfusions. I will attend a day clinic every Monday for tests and and monitoring of medications.