It must be four weeks since I finished the first of these treatments. That was the PDT treatment and I'm really suffering what I hope are the after effects.
For the past week or so I have an awful taste in my mouth. Sharp, sour, metallic and permanent. It only goes when I eat and that is only temporary relief. I have inflammation in my throat which is making it tricky to swallow and the left side of my neck feels hard and swollen. Hopefully these are the after effects of the PDT treatment and at least, if so, they show that the treatment has done something. Of course, there's always the worse possibility that a new tumour is growing in my neck and it is that which is causing the restriction and foul taste. For the first time since I found out about the cancer the ordinary process of getting through a day has become, literally, distasteful. Don't get me wrong, I'm still finding a lot to enjoy, life is still worth living and I'm finding plenty to do but living with this taste cannot be ignored.
The Winchester Maverick thought that the inflammation was likely to last until towards the end of December before it starts to fade out - I really hope he's right. He has a mysterious computer programme that looks like a graphic artists workshop but which he claims is a spin-off from the Russian Space Programme. It shows every organ in the body and is accompanied by musical scales. I have wear headphones and face a detector whilst the tones are played in my ears. Apparently the tones stimulate a magnetic response in the body's organs and by measuring the magnetic fields an indication may be gained as to the health and function of each organ. Apparently the WM can see that by body is now dealing with dead cancer cells. This doesn't mean that all the cancer cells are dead but he is satisfied that it's a good start.
In the meantime I've had to change my diet and start popping pills and dietary supplements like nobody's business. I'll be on about 10 or 15 things every day before long. Some of these are meant to make life difficult for the cancer, others are meant to boost my immune system or support my body's organic processes. It's impossible to know whether anything is working so it's a question of try anything while I can. One result of this philosophy may be a 'holiday' to Germany in the New Year for a newish treatment - dendritic cell vaccine. This is a vaccination that is specifically designed to match my cancer. It is an immune system booster and so programmes blood cells to recognise and attack my cancer cells. Again, there is no guarantee that it will work but if it stands a chance I'll try it. I've only ever spent one day in Germany and would likely have to stay for a week so we thought we might as well make a holiday of it and do a bit of exploring. The clinic is in a small German town called Gottingen. This is in Saxony between Hannover and Leipzig, so if anybody has any suggestions as to things we could do or see whilst in the area let us know.
After that it will be back to England and then three sets of follow up vaccinations at the Winchester clinic. The big problem with my cancer is that it is so hidden. No-one can tell whether it's gone or not, whether it will reoccur or not. The only way to know whether it's there is to wait and see.
Rather than do that I will probably look at the mistletoe treatment at the clinic near Bewdley. So I still have a long way to go and many options open but no guarantee that anything will work to save me. I will be very much happier if I can feel the swelling in my throat getting less and the taste going. At the moment the taste, if anything, is getting worse although the swelling has checked. Still, I'm trying hard to whack the cancer while I can. Although the docs of the NHS seem to feel that little but conventional treatments will work, there are others out there holding out far more hope and making a lot of money out of offering help. We'll have to see. Not everybody survives but I'm not going to get to that stage without a fight.
Last Wednesday we had an appointment at the Royal Marsden Cancer Hospital in London. We drove down on Tuesday and treated ourselves to a night in an Earl's Court hotel. It was surprisingly comfortable. A lovely building, nicely appointed public rooms and very quiet. Our room was certainly compact - although the en-suite was a good size - but it was tastefully decorated and spotlessly clean. It was within walking distance of the hospital which made getting there much easier than if we had stayed in Brentford. The doctor's we met were lovely, helpful and wanted to do everything they could to help. Unfortunately all the had to offer was more cutting, burning or poisoning. They gave us the impression that their conventional therapies were the safest way to go even though they felt that there was little chance of getting rid of all the cancer. I had hoped that maybe there were new therapies - gene or stem-cell based that I might be able to join a trial of. No such luck; even if there were I would not qualify as they have not exhausted all conventional treatments on me yet so putting me in for trials would be unethical. They've left the door open for me to go back for more cutting and burning if I want it - don't think I do.
So I'm investing my hope with the quacks and mavericks. Who knows, maybe they're the ones who really know, maybe they're the ones who can help me beat this. Time will tell.
If I don't write any more here before Christmas let me wish you all a very happy holiday. Elaine and I haven't decided about Christmas cards yet so if none appear please accept this as our own greetings to you.
MERRY CHRISTMAS
with love
RON & ELAINE
with love
RON & ELAINE
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