Skip to content

My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Monthly Archives: February 2012

To the hospital for the weekly check up.Prudy came with us so Linds could show her the pharmacy and what types of things we buy there, mainly to do with Hickman Line site care.

The doctor is pleased with my progress, some of the results were not back yet but he said they would call if there was anything to be concerned about. That was many hours ago and no call. The doctor is very concerned about me going back to Manila for further treatment as Manila cannot do some of the virus tests that are required and they don’t have one of the drugs in the proper size tablets for me. And who knows if they have other drugs that I might need in the future if complications set in. Plus they don’t do unrelated donor transplants which have double the complications of sibling donors so they may not recognise things quickly. We discussed it and the provisional plan is that I remain in Singapore for maybe another 3 months or until the check up schedule is 3 weeks apart, then I move back to Manila but go to HK for my check ups at the HK Sanatorium with Prof. Liang. I’m not sure how the logistics of the extra months here in Singapore is going to work out. Prudy is off to France soon to look after an elderly relative and bring her home to Manila. Linds needs to travel back and forth to sort ut a lot of things. But we’ll sort something out.

After the hospital we went to the Stanford Swiss Hotel to pick up our dear friend Gi who is town because her husband Hans is attending a YPO meeting. She came back to the flat with us for lunch and a catch up chat.

Linds flew back to Manila late this evening (actually 2am tomorrow) for 2 weeks to spend time with Sam and sort a few things out with the flat.

I had an almost no sleep night last night but Linds is much better this morning, Thank God! She’s taking an antibiotic I had left over from when it was stopped 3 weeks ago. Luckily she has taken it before and knows that this works for her chest condition.

She and I went into the office this afternoon to meet an old friend and colleague from Cambridge who is in Singapore for the day, and I had to sign some documents.

Our Qi Gong teacher and Linds both commented that my feet look less swollen than before. Probably because of squeezing them into the trainers last night! I don’t see it but my shoes today did feel a little loose.

Our helper Prudy arrived today to look after me for 2 weeks while Linds has a break in Manila. She will make sure Sam is fully prepared for his Beijing trip as it is going to be cold!. Prudy will be here until the 15th. Linds leaves on March 1 on a 2am flight!

I feel much better today. I have 2 people I am corresponding with privately about the whole transplant experience. It is fascinating how different our treatments and experiences have been. Some people in the list servers complain that their doctors don’t really understand what is going on, and that their treatment is inadequate.

Prudy brought my Nike cross-trainers so I would have better shoes to go walking in. The trouble is, with my swollen feet they are hard to get on. But we managed and did a 1.3Km walk.

Linds is not well,  she has been sneezing a lot and this evening was very listless. I hope it clears up soon.

Well, I stayed up and watched the England v Wales game live.  I was wrong to be so fearful. It was a very close game but in the end Wales won thanks to the referee. England’s game management was not good, but for such a young team they are improving fast. And Owen Farrell was superb.

I am not feeling too well today. My stomach is uncomfortable and I feel weak. I had a short nap this afternoon. Linds dragged me out for  a 1.2Km walk this evening which was nice but didn’t make me feel much better.

Finally, a night’s sleep with only 1 interruption at 2:30am then the next thing I knew it was 7:20am!

Through the GVHD list servers I have been contacted by another person being treated at SGH! He seems to divide his time between Boston and Bangkok and gets treatment in SGH when he is in Bangkok. He reckons he will require a transplant at some stage. He has CCTL-MF which is explained here: http://www.clfoundation.org/sites/default/files/publications/CL_fast_facts.pdf

Linds went shopping again today for warm clothes for Sam for his school trip to Beijing next month. A friend took her to the right stores and she bought him a very nice thick coat, some wool socks and a beanie which covers the ears. That should do for the Great Wall, Summer Palace, Forbidden City sight seeing.

RBS 6 Nations Rugby tonight! I will definitely watch the Ireland v Italy game and then see if I am up to watching England v Wales live at midnight! I’m very nervous that the rebuilding England side won’t be able to cope with the Welsh, especially playing Owen Farrell at No. 10.

Hair is growing on my upper lip and chin. Not much, but it is encouraging after weeks of having a face as smooth as the proverbial baby’s bottom. There is a little bit of bum fluff on my cheeks as well! I might have to start shaving again soon!

A transplant is for life, not just for Christmas. This just popped into my head today, I guess the fact that I engrafted on Christmas Day has been stirring around in my subconscious.

I’ve been on the ACOR GVHD list server following a thread about GVHD of the Lungs. Not nice, even the treatments have serious side effects. One to avoid if possible. Another thread was started by a woman about her Skin GVHD which has reoccurred 4 years after her transplant. She has no rashes but the dark, burnt looking, skin which I have on my back and upper chest. Mine is clearing up quite quickly now. Sobering to think it can reoccur after such a long time.

A Qi Gong session this morning then Josep and Monica came to visit in the afternoon. Josep knows I love Opera and he gave me a CD of Cecilia Bartoli singing arias by Gluck. I can listen to her while enduring the long waits in the hospital.

We walked 2.3Km this evening. It is getting much warmer and a lot more humid so breathing was more difficult and I sweated more.

Time has flown by, I can’t believe that it is 10 weeks since the transplant. I guess the memories of the pain, nausea, fatigue are still too fresh.

I had a lousy night; woke up at 4:15am and couldn’t get back to sleep. Still, the solution to a problem that had been bugging me had popped up from my subconscious so I got up and implemented it; it worked. I tried to sleep for a short while in the afternoon but couldn’t.

My left calf has been aching all day, rather like the ache you get after a cramp, but I don’t remember any cramping.

Armstrong Economics

Forecasting the World

WordPress.com News

Pain is inevitable, suffering is optional.

Waddling Tales

Tales of a slow runner with cancer

MDS journey

MDS Journey to health

Tallbloke's Talkshop

Cutting edge science you can dice with

To do: 52

Venturing out of the comfort zone

Madsen Pirie

Just another WordPress.com weblog

Climate Audit

by Steve McIntyre

Bishop Hill

Pain is inevitable, suffering is optional.

Watts Up With That?

The world's most viewed site on global warming and climate change

Guido Fawkes

Parliamentary plots and conspiracy