As I said in my last post, I was going to get back on my regime and stop looking for a miracle cure, and that’s pretty much what I did. I sorted out all my supplements, got back on to the laetrile and apricot kernels and knuckled down.
Then I went skiing.
We’d booked the skiing holiday a year ago and were returning to the apartment in Arcs 1950 that we had used last year. Up to about November I was fine but I seem to have deteriorated badly over the last few months so by the time I went skiing I was getting quite short of breath and prone to coughing as the tumour in my lung gets bigger. Going up a mountain when you are short of breath is not a good idea, I really suffered. We managed to get out skiing on about 3 days but I couldn’t manage to do much as I was short of breath and my strength has all but gone. It was very frustrating, but at least we were in a nice place and had a big apartment with wi-fi and English telly to fall back on.
I recovered a bit when we got back to some sort of reasonable altitude, however it brought home to me that I probably don’t have long left as my cancer continues to spread.
But we did still carry on following up a few things.
First of all I continued corresponding with the Winship Cancer Care Clinic in Atlanta about the clinical trial one of their doctors was proposing to run in collaboration with Merck. Unfortunately, after 3 weeks of trying to get some idea of the costs I would need to cover in addition to flights and accommodation, I really couldn’t get a straight answer. Eventually they said to me “send us $100,000 and we will put you on the trial”, but they couldn’t tell me what that was likely to cover. I pointed out that I wouldn’t put my car in a garage and give the mechanic £10,000 and tell him to just give me back what he didn’t need. It was just too vague and i was really worried that I’d end up stranded in the U.S. with no medical cover and the airlines refusing to let me on a flight home as I was too ill. So I turned down their kind offer.
I tried to contact the clinical trials team at Merck to see if I could blagg my way onto a trial in the UK, but although I got one reply to an email, I couldn’t get any others. I left voicemails for people but nobody phoned back. Drug companies are not interested in patients it seems.
In January I read an article in The Times about people traveling abroad to get treatment that just isn’t available to them in the UK. A lot of things chimed with me; statements like “the NHS sent me home to die” and “The trouble with the NHS is you do get written off a bit once you reach the end of the therapeutic road”; both those things happened to me in April 2015.
But the other thing that came out of the article was that going down this road would be very expensive, most of the people they talked about were having to crowd fund to cover the costs of their treatment.
Even after the extremely negative second opinion from the Immunotherapy and Skin Cancer team at The Royal Marsden, I still think the best chance for me is immunotherapy but it isn’t available to me in the UK as it hasn’t been proven to work with my form of cancer. It probably never will be either as there are so few people with my form of cancer that nobody will ever be able to cover the cost of a clinical trial from the few patients it will benefit. However, the Germans do not have such restrictions and seem to take a much more personal approach to cancer treatment. So I could probably get immunotherapy drugs in Germany, but I would have to pay for them.
The clinic that is mentioned in the article is The Hallwang Clinic in Bavaria, so I gave them a google and it produced mixed results. There were a lot of people singing their praises for providing treatment that has helped them immensely whilst their are a couple of science blogs that say they just give false hope to cancer patients.
Having nothing to lose I contacted them and they got back to me pretty quickly, asking me to have all my diagnosis notes, scan results etc forwarded to them so that they could see if they could help and possibly put a treatment plan together. So far so good, they were being cautious and not claiming to be able to cure me. I arranged for my notes etc to be forwarded to them and on Tuesday last week I received a phone call from one of their doctors. He was incredibly enthusiastic and said that he believed that my form of cancer would respond well to immunotherapy, possibly to full remission, however he would need my tissue samples in order to determine what would be the best approach for me. I was a bit overwhelmed, I don’t think I’ve ever had a positive conversation with a doctor during the whole of my treatment.
So he was pretty keen to get me across to the clinic but he was also cautious about how they were going to treat me, he wanted my tumour tissue samples before committing himself to a full treatment plan. It was still sounding good. I duly received some forms to fill in, including a consent form so they could get my samples, and a treatment plan, with costs, for my week long stay at the clinic. The treatment plan contained a number of optional items with varying costs as they will not decide what to give me until they have tested my tissue samples, so I’m not entirely sure how much this will actually cost me. It will be in the region of 60,000 to 100,000 Euros.
That made me sit down as well!
It’s an awful lot of money with no guarantee of it working but I have a lot of confidence that they will do their best for me rather than just have my money and not really care. If I don’t do it, I will be dead pretty soon, it might work, it might save me, it might not.
I can fund this first visit and possibly another, without making my wife homeless, as I was paid my Army pension early and still have the lump sum, I’ve also emptied my personal pension (tax free as I’m terminally ill) and am selling my beloved (but valuable) Northern Soul record collection. But if I have to continue to go across there for treatment I’ll need to start some sort of Crowd Funding and send you all begging letters, which sort of goes against the grain for me.
I’ll know if its going to work after this first visit so I’ll make a decision after that. Wish me luck!