My Bone Marrow Transplant

To the dentist for my first check up and clean since the transplant. They fixed me up before the transplant with 4 hours of cleaning and filling work. My teeth are very sensitive now, due to the drugs, so it was a bit of an ordeal, especially when they blew air on them. I got the usual lecture about flossing.

I reduced the Prednisolone dose to 10mg this morning. The diarrhoea is intermittent and I am taking Loperamide to try to stop it. The tablets were given to me when I was discharged from hospital but this is the first time that I have had to use them. I need to find Acidophilus and try taking a small dose every day to help stabilise the gut bacteria.

Poppadoms with the chicken curry for dinner tonight. I haven’t had those in over 8 months. Francesca is on her way home from the UK so we will be together tomorrow afternoon.

I went to see Dr. Lopez at St. Luke’s Medical Centre first thing this morning to bring him up to speed on my progress. I had sent him my Patient Discharge papers and last blood test results to bring him up to speed. He gave me a brief once over and said I was in good shape. He also gave me a lot of good information on the side effects of the steroid which explained a lot; it causes skin thinning, vision problems, tremors. I told him that giving up coffee yesterday had helped calm things down. He suggested that I alternate the Prednisolone 12.5mg and 10mg alternate days. I’ll take a 10mg dose tomorrow and see what happens.

After that I went to the lawyers who are processing my visa to stay in the Philippines to hand over the completed forms and copies of documents that they require. My last visa expired last year while I was in hospital in HK so we start the process all over again!

I spent the afternoon working on our iPhoto picture library for 1997! All the Album data got lost in a software upgrade so I reconstituted things as Events rather than Albums. It was fascinating! Sam’s birth and baptism pictures, our trip to Vietnam with Tony and Candice, the hand-over of HK from the British back to China, lots of photos of a very cute Francesca.

I went to my first event since returning home this afternoon, the BSM school concert. Linds said that there wouldn’t be that many people there so it would be safe and I really wanted to see Sam perform. It was a good afternoon and I got to see many old friends.

My stomach/upper GI issues continue but have eased slightly. I picked up a useful tip on the GvHD forum that I subscribe to from a woman in Hawaii. Take 1 teaspoon a day of Acidophilus. She says it really helps her so I might give that a try if this doesn’t go away soon. I have stopped drinking coffee as it irritates the upper GI. So now I have a persistent headache from the caffeine withdrawal!

We met Simon and Maureen who we knew from HK days. Their son Thomas just graduated from BSM and is off tomorrow to learn about boat maintenance and do a yacht delivery from Samoa to HK. They came back to our place and we had a long chat to catch up.

I woke up late when Sam woke me up to tie his school tie for Speech Day. I was up at 3am and 7am as the GvHD flare-up continues to play havoc with my stomach and Upper GI. About 20 minutes after I took my pre-food drugs before breakfast I had dry heaves for a brief period so I started breakfast with 2 plain pandesal. After the pandesal the fruit did not cause any problems, nor did the fresh Buko juice 20 minutes later or the Itraconazole at noon.

England beating Sweden 3-2 in Euro 2012 overnight helped to boost my good mood from the delightful dinner last night. The warmth and friendship were truly humbling and Sukanya’s speech almost had me in tears. Cecilia came to visit in the afternoon, it was great to see her again after such a long time.

Today is the 6 month anniversary of my transplant. Thank you all for the support and love during this challenge.

The GvHD flare-up continues which makes me feel slightly under the weather. I drank some fresh Buko juice after breakfast and it made my stomach cramp for a few minutes. The good news is that I was only up once last night at just before 4am, and taking the Itraconazole 2 hours after food is definitely better than taking it 1 hour before.

The apartment was busy all day as we prepared to host a small leaving dinner for Sukanya and Leela who are off to live in Tokyo for at least the next 3 years. Dulce was here before 9am to help Linds with the preparations. Joost and Naomi made it even though they were moving to their new apartment today and they were in total chaos in the middle of unpacking!

The party was very enjoyable, 8 adults and 6 teenagers. 30 minutes before the guests were due to arrive I had some severe stomach cramps and was wondering if I would be able to participate, but when people started to arrive I was OK. Sam’s FaceBook account was heavily fraped by the girls; more fool him for telling them his laptop password. Edna cooked a wonderful meal and everyone went back for more. Leela made a beautiful thank you speech to her friends, who all recorded it on their mobile phones, you would think they would have designated one to do the recording and then share it. We also had a cake for Sukanya in celebration of her birthday next week.

It was great to see David when he came to pick up Angel. He couldn’t make the dinner as he had an event he had to speak at. They are off to Cannes tomorrow and we will catch up with him properly when they get back.

It wasn’t until I went to rest for a while at 11pm that I realised how tired I was! Being with some of our closest friends was such a delight.

I was up at 7am to take my new anti-fungal drug an hour before breakfast. I took the cyclosporin at the same time. I did not feel nauseous or queasy, but 45 minutes later, while I was showering, I started throwing up. Just clear liquid and not that much. Afterwards I felt OK and we went for breakfast which we always start with fresh fruit. On my third mouthful I started to vomit again. Again, after it was out of my stomach, I felt fine. I stopped eating the fruit and had 2 dry pain de sals which stayed down. That enabled me to take my other morning drugs. Later I had a banana and no adverse reaction. I moved my dentist appointment to next week and at a later time which gives me time to work out the best way to deal with this new drug.

During the day my gut felt uncomfortable so at dinner I tried taking the Itraconazole 2 hours after food which seems to be better.

A bit more sleep last night but no sleeping tablet. I was tempted to take one at around 3:30am. Linds said she woke up a couple of times and I was snoring! I was up twice as well and she was sound asleep both times, so we are out of sync there. The GvHD is still a bit strong so I haven’t reduced the steroid dose yet, but as I expected the Noxafil has run out as of this morning’s dose so I switched to the Itraconazole replacement this evening. I felt a lot better after lunch so maybe this flare up is subsiding.

I went to the local hospital this morning for catheter flushing. I had to retrain the nurse as I am the only Hickman they ever see and the last time she saw me was in November before I went to Singapore. And she has been on maternity leave until today so she was thrown in at the deep end.

I had lunch with a very close friend who is Dutch and has been a great supporter during this whole illness. He even flew to HK when I was diagnosed and got himself on the bone marrow registry there to see if he could be my donor! Selflessness and friendship at that level is so very special; I hope that we can repay him one day.  He will be up at 2:45am tomorrow morning to watch the Euro 2012 Netherlands v Germany match in a local pub. That’s dedication! Of course, being British, for me it is easy to support the Dutch tonight and I will support them in every one of their games unless they are playing England. And I will support any team that plays Germany.

Sam and I watched Iron Sky this evening and thoroughly enjoyed it. It’s one of those so bad it’s good movies. We played spot the movie reference of which there are plenty, the best being the classic Hitler rant scene from Downfall.

From Wikipedia:

“The Philippine Declaration of independence occurred on June 12, 1898 in Cavite II el Viejo (now Kawit), Cavite, Philippines. With the public reading of the Act of the Declaration of independence, Filipino revolutionary forces under General Emilio Aguinaldo proclaimed the sovereignty and independence of the Philippine Islands from the colonial rule of Spain, which had been recently defeated at the Battle of Manila Bay during the Spanish-American War.

The declaration, however, was recognized by neither the United States nor Spain. The Spanish government later ceded the Philippines to the United States in the 1898 Treaty of Paris that ended the Spanish-American War. The Philippine Revolutionary Government did not recognize the treaty, having already gained the upper hand in its war of independence from Spain. When the Americans sought to execute the terms of the treaty, a bitter three-year conflict, now called the Philippine-American War, ensued. This conflict represents the first of America’s mass deployment of its troops into foreign soil and saw the evolution of guerrilla warfare as bands of poorly armed Filipinos challenged the highly organized and well provisioned US armed forces. Pockets of resistance continued well beyond the armistice of 1902 that paved the way for American colonization of the archipelago. After democratizing the governmental and educational systems of the country, the US finally granted independence to the Republic of the Philippines on 4 July 1946 via the Treaty of Manila. July 4 was observed in the Philippines as Independence Day until August 4, 1964 when, upon the advice of historians and the urging of nationalists, President Diosdado Macapagal signed into law Republic Act No. 4166 designating June 12 as the country’s Independence Day. ”

I decided last night that I needed to wean myself off the sleeping tablets. I didn’t take one and as a consequence I got about 3 hours sleep! But I did manage to call my brother in the UK at 3am my time as we haven’t spoken in a while. I expect it will take 3 – 4 days for my system to accept that the drug isn’t coming back.

The GvHD is a bit more active today, I can feel it in my gut and my lips are dry and cracking. I was going to cut down the prednisolone tomorrow morning but I think I will leave it until this little attack subsides. I should finish the Noxafil tomorrow and start the Itraconazole which is the replacement. This makes life a bit more complicated because it has to be taken 1 hour before or 2 hours after food.

We spent over an hour in a bank this morning sorting out bank account stuff which required both signatures. I spent the afternoon scanning more medical documents and emailing them to various doctors and the insurance company. And paid a few bills.

Igna came to visit this afternoon which was great. She had a lot of S$ left so we swapped them to Pesos at a good rate for her. She is such a treasure and looked after us so well in Singapore. She takes the bus to Bicol tonight for a holiday at home. The trip will take all night but she is a very sprightly 76 year old!

I met up with Dan for dinner and a catch up. I have known him since 1989 when I started dating Linds and she introduced us. It was great to see him again and find out what’s going on with his family. 3 days of being at home and normality is such that I almost forgot to take my pre-food drugs before I left for the dinner!

Pacquiao lost to Bradley! It can’t be, the PacMan never loses! He should have lost to Marquez in his last fight but in this one the stats were clearly on Manny’s side. We watched it live in the function room of our apartment building courtesy of a new Cable TV company which wants to sell their purely HD channels to us. After the fight, as Sam and I walked out of the function room, we met Fr. Arnold who says Mass in our building’s Chapel. He was holding up a hand written sign saying in big letters “I’M FOR BRADLEY” and underneath “Now let’s go to Church”. I was really glad to see him looking well because I know that he has been quite ill while I have been away. He confirmed to me that he is fully recovered.

Lunch was Chili con carne and rice at home, for dinner we went to The Last Chukka at the Polo Club and I had a Pizza Antonio. I have to carbo load to watch the French Open Men’s Final!

I called Sky Cable this evening to upgrade our subscription as Linds had cut it down to the absolute minimum while I have been away.

Talking to Customer Services rep 1: “I want to upgrade my Sky Cable subscription.” I have to give my name and account number. CSR1: “I will pass you on to someone else.”

Talking to Customer Services rep 2: “I want to upgrade my Sky Cable subscription.” CSR2: “Can I have your name please?” I give it. CSR2: “And your full address?” Me: “Wouldn’t it be simpler if I gave you my account number?”

CSR2: “OK Sir”. I give her the account number. “How may I help you?” Me: “I want to upgrade to a package which gives me Star Sports, ESPN and HBO.” CSR2: “That would be Gold sir, it will cost x.” Me: “That’s fine, please do it for me now.” CSR2: “I can’t sir, you need to send us a letter.” Me: “Why?” CSR2: “We need documentation.” Me: “OK give me the email address. What happens after I send the email, you activate it immediately?” CSR2: “No sir, someone will call you back.” Me (getting a tad irritated): “You have got to be kidding me! That’s just stupid.”

CSR2: “Sir, send the email right now and I will stay on the line and deal with it.” I send the email, she confirms receipt. CSR2: “Please turn on your Cable box and TV and check Channels 32, 36 and 54.” I do so and Yes! It’s done.

Me: “Thank you, now I also want to subscribe to your Euro 2012 and Olympics package.” CSR2: “I’m sorry sir, it isn’t available. We are unable to show Euro 2012 at this time due to technical difficulties.” Me: “You are aware that Euro 2012 has already started?” CSR2: “Yes sir, we will notify you when we can offer that package.” Technical difficulties my (swollen) foot, I’m about to watch the French Open live. More like the price they were asked to pay for the rights to show it outweighed the interest here. Football is not that popular here, but it is gaining followers. I’ll bet the technical difficulties disappear immediately Euro 2012 finishes.

Dealing with Customer Services at big companies. It’s more fun in the Philippines!

I have added a page showing my Transplant Schedule for those who are interested in the day by day procedures. Now that I am home I have access to our scanner and have been scanning lots of important documents. Tomorrow is a busy day with banking and legal stuff to attend to.