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Six years ago today I had my first and so far only flight in a private jet. And I was in a coma! It was an air ambulance ferrying me from Manila to Hong Kong. My long journey to recovery started with that trip.
My then boss, Stephen, whose birthday it is today, funded the trip. I was accompanied by Linds and a nurse. At Hong Kong airport we were met by an ambulance which took me to Hong Kong Sanatorium and my recovery began. The 11 month journey to get fit enough to have the transplant that would save my life.
Three years is the magic figure quoted by Doctors for transplant patients. If the disease isn’t back within 3 years, then the chances of it returning are small. I have 1 month to go to reach the 3 years! We are planning a big party to celebrate.
There is a big discussion on the forums about fatigue, anxiety and depression, and that some patients are being treated for PTSD. It makes sense. A transplant is a truly horrible experience, physically and mentally. You enter the transplant room knowing you could die from the treatment, knowing that you will be in great pain for weeks. Then the intensive chemo regime destroys your body, then the transplant, then the agonising wait for the first sign that it has engrafted. Waking up every morning is a victory; another day that you dodged infection, your heart held out.
But then the first uptick in the WBC signals it might have taken. Every morning you wait anxiously for the results. Another higher WBC count, then another, then hope gets stronger. It looks like you have pulled through.
So is it any wonder that people who have been through this are traumatised, get anxious over small things? I don’t think so. We have survived our own battle with death. We have faced death day after day, helpless, trusting in God to guide the doctors and nurses.
It’s a bittersweet week. Today is my 64th Birthday and I have been showered with greetings and love from all around the world. It’s my sixth bonus birthday, so lots of reasons to be cheerful. I’ve seen Francesca graduate, seen Sam grow up into a fine young man. I’ve been blessed with a truly wonderful wife, who has been the rock of the family. But last Friday a friend died; she fought cancer for several years; it came back 4 times. In the end, the punishment that her body had taken proved too much. She leaves a husband and 3 children. We went to the service for her last Sunday evening.
So the guilt comes back; the feeling that people who have lost family to cancer will look at me and think “why did he survive and our precious die”? There is no answer. Talking to someone last week who had lost his wife to Lymphoma 2 years ago, we talked this through. He said there was a woman in the village where they live in the UK, who could not bear to see them because she had a daughter who had survived the same cancer. And the inanity of people who said “well, it’s a good cancer to get because the survival rate is so high”. There was real anger in his voice as he said this. His wife didn’t respond to any treatment.There are no “good” cancers, people. All cancers are horrible, for the patient, their family and friends. Cancer destroys homes, lives, relationships.
I should have died in July 2009. But the doctors and nurses and Linds and our friends – especially James – got me through it. I know they called Linds one night at about 3am because they weren’t sure that I would make it to the morning. I should have died in March 2011. Linds brought my children and grandchildren from the UK because my condition was so serious. I went into a coma in Manila and woke up in Hong Kong. My daughter Louise slept in my hospital room in Hong Kong, away from her young children for a couple of weeks. I had dinner with her 2 weeks ago on her birthday and said “there were times in the early days in HK that I went to sleep not knowing if I would wake up”. She said “Yes, we felt the same.”
So, God wants me to do something, and I think that I might be starting to understand what that is. It will be tough.
I haven’t posted in a while. A discussion on one of the GVHD forums about Fatigue prompted me. I thought my fatigue was because of the persistent low RBC. Turns out, other transplant survivors with “normal” RBCs also have it. But they also have Chronic GVHD, which (touch wood) I don’t have at present. Turns out they also have elevated Creatinine levels and have to drink a lot. I love the forum; it helps me know that what I am going through is par for the course. The heart breaking posts are those from parents of young children, or those who have just lost a loved one.
Advice from doctors: exercise and stretch. Been doing that. And Yes, fatigue is lessened after some exercise, and the stiffness is eased. If I don’t stretch in the morning, I really feel it in my legs when I get up after sitting still at my desk for some time.
What else is going on? At my last check up my RBC was up slightly. Hopefully a trend that will continue.
I still have the lizards. I tried going back to the amitryptyline but the side effects were still there. Numbs the pain a little but makes me a zombie. I threw them away. I’ll live with it. I stopped taking Lipitor because the side effects were horrible. I still take Allopurinol because my Uric acid level is high. But no steroids or immune suppressants for months now.
I have a right shoulder rotator cuff problem. Been getting physiotherapy for it and it has helped a lot.
I went scuba diving again. Probably a really stupid thing to do because of the infection risk but I had a great time. Did 4 dives in 2 days and coped just fine. Getting the BCD on was tricky because of the rotator cuff problem, but we managed.
I read a report recently which said that standing up is good for anti-ageing. Great! If I stand up for long periods my legs almost lock up. I was at a reception last night and really, really, wanted to sit down during a speech. But I was right in the eye-line of the speaker so I couldn’t shuffle off and collapse gratefully on a sofa until he finished.
Three months to go to the third anniversary. Another major milestone coming up fast.
I am growing a moustache for ‘Mo’vember to raise money for the victims of the Bohol earthquake. If you want to learn more about Movember go to uk.movember.com. Please sponsor me.
Simple rules: you must have a clean shaven upper lip on November 1st, which I had. No beards or joining to sideboards. Here is my moustache on November 6.
I had my 22 month check up in HK last Monday. All is good but I am now resigned to the fact that I will never have a “normal” red blood count. The bottom of the normal range is 4.5 and I hover around 3.1, so anaemia is the norm for me. As is taking Lipitor to control my cholesterol. My next check up will be January 6.
They started my 3 year vaccination program, treating me as if I was a new born baby, 2 vaccinations this time, 4 more at the end of April.
I also saw a Pain Management Specialist recommended by James, who prescribed a new drug to go with the existing pain drugs. However, I didn’t have time to get it in HK and then found that it isn’t available in Manila even though it is a well known drug. Not even St. Luke’s has it in their Pharmacy. Luckily a friend is in HK this week and she will bring some back for me tomorrow. He also sent me details of a Lignocaine patch which is supposed to be effective. Again, not available here but this time not available in HK either, so friends in Australia will get some for me to try.
I got the drug, Amitryptiline and have started taking it. The instructions are to take 1 25mg tablet before going to bed. It’s supposed to help me sleep and also reduce the pain. All I can say is that, after 3 nights, it just makes me sleep through the whole of the next day. It’s an effort to stay awake to write this.
The pain has lessened. Its more of a dull but strong ache with occasional knife blades. In the affected areas my skin is very sensitive, it is best for me not to wear a shirt.
Linds posted my last blog entry on FaceBook asking for help with the pain. We got so many responses, thank you all. We are trying turmeric tea and Capsaicin cream, the latter donated by Ruth. I drink the turmeric tea 3 times a day and use the cream at the same frequency on the under side of my left arm and my man boob.
I feel like I have been kicked in the left man boob by a horse. The whole thing aches. Holding it relieves the pain. However I don’t get the shooting pains at anything like the frequency or intensity as before. I’ve noticed that the skin on the under side of my arm doesn’t feel normal when it hurts and before I apply the cream. It feels numb as if the nerves are shut down. The cream normalises it, gives it elasticity again.
I’m still taking the Lyrica but with longer intervals between doses. All in all some slight progress.