Do It Yourself

Hello, hello, hello, hello, hello - as the copper said to the man with five heads. I bet you've been waiting for this update with anxiety, impatience and foreboding. Well allow me to put your hearts at rest - I am still alive and kicking!

The last entry was pretty black and must have sounded quite hopeless. It was written at a time when Elaine and I were at a particularly low ebb and when we'd just been given some seriously bad news. I find it inspiring to discover that so many of you have asked and encouraged me to continue with this blog. So be glad that today's entry will hit a happier and more determined note.

We weren't about to take it lying down, so pretty soon after 'Black Friday' Elaine and I got onto the Internet to try and find out what was out there. The first stop was to buy me a voice amplifier. This is a gadget that looks rather like a 1970's transistor radio. It has a suitably discreet throat microphone that sits to one side of the larynx on a band round the neck and a main unit that will fit into a reasonable pocket. Suddenly I can engage in group conversations again or go out for a meal with friends without just having to sit and listen all evening. It does take the unexpecting (shop assistants, waitresses etc) by surprise when they hear this metallic, amplified voice issuing from my chest or waist but so far no-one has been curious or confident enough to ask about it. Eating out can cause some amusement as the unit amplifies everything, voice, burps, swallows and drinking sounds. Fellow diners in a restaurant look round in astonishment trying to locate the source of these unusual sounds. However, that is a small price to pay for the convenience it brings me. Maybe, some time in the future, speech therapy or Teflon surgery will render it unnecessary but I could be dead by then!

Following this purchase we went on to look at treatment options. To kick off I went for the DNA micro-array tests in Bristol. On a wet and miserable day Elaine and I took a gentle drive down the M5 and found the road to Clifton Downs without trouble. After a short stroll around we found the clinic housed in a very impressive Georgian mansion on a most impressive road facing a park beyond which was the suspension bridge itself. Much to my surprise there were dozens of doctors all operating out of the same building. The place was a warren of independent practitioners all collected together under the same roof. Whether there was any common thread or philosophy running through the different practises was impossible for me to know. The waiting room was really impressive, rather like a lounge in an expensive country house hotel. There was a open log fire, antique furniture, a huge window at least 10 feet tall and lots of glossy, expensive end magazines. We had only a short wait before someone came to collect us. Turning a corner from the public areas showed another face of the practice. We were led along a narrow, hospital cream painted corridor in need of some personal touches to a slimline lift that had difficulty accommodating three. Then, instead of going up we descended into the bowels of the building. Exiting the lift we followed along subterranean corridors stacked high with boxes of medical gear, lined by electronic equipment linked to the rest of the building by thick, heavy cables. There were overstuffed filing cabinets and supplies of all sorts taking up half the floor space. Eventually we arrived at our doctor's domain. Her secretary's desk was stuck in the corridor, her nurse's room had no outdoor light and was already occupied by two patients having various liquids dripped into their bodies, her waiting area was four chairs stuck in the corridor. The doctor had her own consulting room but as the door was shut all the time we were there I have no idea what it was like.
The nurse came and drew blood, there was a questionnaire to complete, an invoice to pass over and that was it for the day. The results were promised in seven to ten days, provided I had paid my bill.

The following day we had an appointment with the NHS oncologist in Cheltenham. Rather than do too much running around we went straight there from Bristol and B&B'ed overnight. The Cheltenham Dalek is in fact a good bloke. You can see that he wants to do his best and is involved and concerned for each of his patients. He gave the impression that he agreed with our decision to reject surgery and went on to tell us about the palliative chemo-therapy. He explained that the drug (for drug read poison) that he would try me on first would kill some, but not all, of the cancer cells as some of the cells would be drug resistant. These would then multiply to become the majority which would then require the need of a stronger poison which again would not kill all the cells and so it would go on. There was more talk of scans and side effects but eventually we were encouraged to look at the other, alternative treatments before using chemo as the chemo knocks out the immune system and the aim of many alternative therapies is to stimulate the immune system into attacking the cancer cells. So, for the time being at least, we have rejected chemo too.

Next in line was a visit to Hampshire to see a maverick doctor who works out on the fringe and about as far away from conventional medicine as possible. He is Mr Draculamp II. Mr Draculamp II does not use lasers or potions that turn you into a vampire. Instead he uses green drops that stain your tongue for two days and mean you must not go sunbathing until the end of the week. When the end of the week comes you have to have blood taken (you'd expect that with a vampire now wouldn't you?). The blood is drawn by one of Mr Draculamp's helpers who are dressed up to look exactly like real nurses. The blood is then mixed with another magic potion that looks just like water but it turns the blood bright pinky-red. The 'nurses' say it's called ozone but it isn't really 'cause we all know ozone's a gas don't we? Now, very generously for vampires, the stick the blood back in through exactly the same hole they took it out of. After a ten minute rest to allow the pink blood to circulate I had to lie on a plastic bed surrounded by ten thousand little LEDs (light emitting dwarfs) that all glow red because of the tremendous exertion they have to go to just to keep warm. It just so happens that they glow at the exact frequency needed for the green drops and the pink blood to react and release oxygen; and we all know oxygen is poisonous to cancer, don't we? After six days of treatment on either side of the weekend I was sent home with a warning that things would carry on working and the cancer would become inflammed and die off. My neck and mouth would become more swollen and probably painful. That was two days ago. It's just possible that my neck and cheek are more swollen today, but it's marginal. Fortunately there's no pain.

Between visiting the Hampshire Maverick for an initial consultation and going back for a week of treatment we pursued another, more local, option. Trimpley is between Bewdley and Bridgenorth and is the location of the only clinic in the country that practises the anthroposophic medical practises first developed by Rudolph Steiner and now quite commonly used in Switzerland, Germany and Austria. The aim of their treatment is to kick start the immune system and strengthen it so that it can attack and hopefully contain if not destroy the cancer (again no promises). In order to achieve this end they use a drug derived from mistletoe. The initial treatment is to give intravenous infusions of mistletoe which in turn provoke a fever. The fever is a sign that the immune system is working overtime. Their aim is to invoke four fever episodes in a fortnight. Fortunately, as the body becomes used to this abuse the reaction becomes less traumatic. Cancer cells do not like extreme body temperatures and although the fever is not so extreme it does provoke enough change in some cancer cells for the immune system to recognise them as alien. Thereafter the immune system will continue to operate against the cancer. One down side of the treatment is that the injections have to continue for years if not for ever. Sub-cutaneous injections into the belly two or three times a week may not sound bad to those who have to check their blood sugar levels and dose themselves with insulin on a daily basis and I'm sure I'll get used to it .....

A few days ago I received the results of the Bristol blood tests. Although one needs a degree in medical jargon and another in statistics to be able to interpret and understand them, they appear to confirm that I do still have cancer in my system. Next week we have to go down to Bristol to meet the doctor and get a clearer idea of what they show and what they suggest should happen next. A couple of weeks after that we go back to Hampshire for more blood tests and some idea of whether the maverick Dr Draculamp's treatment has done any good. Then it may be close to Xmas and then maybe I'll sample the delights of mistletoe. And if none of this works .... well there are plenty more odd treatments out there to consider.

It's just one week now until my 60th birthday. It feels like far more of an achievement now than it did when I handed in my resignation 18 months ago. I know some of you thought my birthday was in the summer when I was going to have my party - you were misled. I'd decided to have the party early when we could still use the garden. On top of that I was hoping to be in America until Nov 4th on our house exchange, so coming back jet-lagged, to a party was a non-starter. The house exchange only half-worked. We stayed here but our exchange partners, Amy and Tom, came over. They have stayed with us, used the house while we were down in Hampshire and visited other friends of theirs. It's been great to meet them and exchange experiences. We're still hoping to be able to take a trip to America before it's too late.

OK, that's about it for now. Thanks to all of you for your interest, support and encouragement. We're still open to visitors if you can make it some time and it will be good to see you if you can.

Ron.