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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Monthly Archives: June 2012

My eyes were pretty bad first thing this morning, a consequence of the reduced cyclosporin dose. By early afternoon they had improved.

I was supposed to have a Skype call and a lunch today but neither materialised. I have no idea why the Skype call didn’t happen but my lunch date has ‘flu so no way were we going to meet. Pity, I was looking forward to Fish ‘n Chips.

This morning I shaved with a wet razor for the first time since early March 2011. It felt strange but I’m sure that I will get used to it very quickly again. Another milestone. The shave is so much smoother than that from an electric razor. Trivia fact: I don’t use shaving foam and haven’t for years, I use shaving oil. Less bulky to carry around when you spend a lot of time on the road. A few drops is all you need each time.

It is so much quicker to take a shower without the Hickman line in my chest! It was there for so long that I had forgotten how restricting and time consuming it was both before and after the shower.

We are getting ready for our family holiday in Bacolod, Siquijor and Dumaguete next week. No laptops allowed but there will be at least 3 cameras.

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I started the lower cyclosporin dose today, It is now 50mg morning and evening.

Francesca and I flew home after a splendid Dim Sum lunch with Joey, Cap and Joey. The Xiao Long Bao was the biggest I have ever had.

A huge thank you to all the friends we met up with during our time in HK, it was great to see you all. Especial thanks to Paula and Steve for letting us stay in their flat. To Joey for organising the Monday night dinner and choosing the menu, even though he could not attend the dinner himself, to Madeleine for hosting the dinner in his stead, to James for the dinner last night, to Jules for coming up with great suggestions for where Francesca can intern later this summer, and to Cap for always being there for us.

Up early at 6am for my operation. Breakfast and I am ready by 7am so I call James and he says “I have a patient before you, get here at 8:45am”. At 8:30 I set out, initially with the thought of getting a taxi, it’s not that far but it is down a very steep hill all the way. There were so many people waiting on Old Peak Road for taxis that I decided to chance it and walk. When I got to the hospital my legs were like jelly!

The operation was done under local anaesthetic and was quick but afterwards I had to sit in bed pressing on the vein in the right side of my neck for 30 minutes, then they insisted I ate something.

Cesca came to meet me at the hospital and we went for lunch, then to buy Sam a PS3 game in HMV. Afterwards we met Jules for a coffee in Landmark, went to Nespresso, the Apple store and lastly Agnes B in IFC where we met Camille for a quick chat over tea.

After that Cesca went to Causeway Bay to get a new battery put in her watch and meet a classmate from Bristol for dinner, while I went back to the flat to rest and change before heading over to Heng Fa Yuen for dinner. There was way too much food and the highlight was Norma’s Lemon Meringue Pie, made especially for me.

A busy and fruitful day.

To the HKSH at 10am for my check up. Surprisingly I wasn’t grumpy due to the fasting since dinner last night. They weighed me and took my blood pressure and we noticed our Christmas card to Raymond on the wallboard by his nurse. While waiting  for the blood test we had a quick chat to Raymond who walked by. After the blood test I had a Chest X-Ray then we went for breakfast then to Windsor House.

Back to the HKSH for my noon appointment which meant that I saw Raymond at 12:45; ’twas ever thus. All is fine except the Creatinine level is a bit high he says the increased tremors are due to a build up of cyclosporin in my blood, so tomorrow I omit cyclosporin, then start on a reducer dose on Thursday. Also, as of next Monday I can reduce the Prednisolone from 10mg to 7.5mg daily.

Then we went to the pharmacy to get 3 weeks worth of drugs which took another 45 minutes so it was a late, late, lunch at the Yacht Club before diving back into deepest Causeway Bay for more shopping, mainly for Linds. We caught up with Simon and Thomas at the Yacht Club for a brief chat over lunch. After the shopping we headed back to Steve and Paula’s flat for a rest and dinner. It was an early bed time as I have to be up at 6am tomorrow for my operation.

Francesca and I flew to HK in the morning and were at Steve and Paula’s by 2:30pm. We had a big dinner with friends at The Shanghai Fraternity Club in Wyndham St, courtesy of Joey Fan. Joey could not make it but his wife Madeleine was there. The food was, as always, excellent. I haven’t eaten so much for dinner in months, which is probably just as well as I have to fast until after the blood test at 10am tomorrow.

Today is the 3rd anniversary of my diagnosis with MDS. It has been an incredible journey and has changed the whole family in many ways. I nearly died twice, the first time in July 2009 (infected Hickman line exit site) and the second in March 2011 (fungal infection in the lungs). It is also Gurumayi’s birthday, so Linds and I went to the Siddha Yoga hall at 10am for 2 hours to help celebrate.

Afterwards we picked up the kids and went to Seconds in High Street for lunch with very close and long time friends. Grace, Andy, Lenny, Gi, Hans, Isabel and Matthew were all there. I had Lamb Shepherd’s Pie, I should have had the Fish ‘n Chips because their chef doesn’t know how to make mashed potato topping for Shepherd’s Pie. It was far too runny. Afterwards everyone went back to Hans and Gi’s house for Lava cake dessert and a nice time chatting with them! Francesca and Isabel now join the adults rather than the younger boys. That’s what University does to your kids, helps them mature. It was so good to be back with friends we have known since Hong Kong days. We decided that next year the old HK Play Group kids would go back to HK on a trip together, with parents to supervise of course!

I drove for the first time in 8 months. First to Siddha Yoga, then to lunch and then to Hans and Gi’s house. Not long trips but it was good to get behind the wheel again. Another normality tick in the box!

I have done a deal with Sam as to what grades he needs to get in his GCSE exams in 2 years time to get driving lessons.

The packing for HK is done, except for the Krispy Kremes which will be bought at 7am tomorrow so they are reasonably fresh when we hand them over.

I started taking Acidophilus today, following a tip on the GvHD blog from a woman in Hawaii about it helping to settle the GI down. She takes a liquid form, I have capsules. Let’s see how it affects me.

Sam went to a photography workshop this afternoon run by a family friend, Jim Paredes. Then this evening Linds and Francesca went to watch Madam Butterfly at CCP.

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