Back in June, because I'd been having some pain again, a CT scan was organised, and got the results in July - not good. The tumour has come back in the same general area and is about 5.5 x 8.5 cm. It's pressing against a nerve which is why I'd been getting so much pain, and is also squeezing one of the tubes from my left kidney.
The oncologist said that I've had as much radiotherapy as I can have, and the standard chemo for Anal Cancer had stopped working last year so he doesn't see any benefit in trying that again. There is one other "mainstream" chemo, which isn't standard for Anal Cancer, so wouldn't even be guaranteed to work, but he said that as the side effects are quite severe, my quality of life wouldn't be good while I was on it, and if I was one of his relatives he wouldn't want me to have it. So, there aren't very many options left as far as conventional medicine goes.
I have been offered a Phase 1 drug trial, which initially I thought would be my best bet, but the more I read into it, the less sure I was. At time I was offered it, less than 50 people in the world had had it so far, and at the moment they are testing doses, and checking how the body tolerates each amount, so there's no guarantee that the dose I would get would have any effect. I also wouldn't be allowed to take anything else for the duration of the trial and for a period of time afterwards and I'm not sure if I want to put all my eggs into the one basket when there's no guarantee that it's going to have any positive effect. We spoke to the research nurse at length about it and decided that, at the moment, it's not the best option for me.
In the meantime, one of the district nurses suggested finding out about
Mistletoe therapy, so I phoned Clan House and made an appointment to see a doctor there. To cut a long story short, she asked my GP to refer me to a doctor at the Camphill Community who specialises in the treatment of cancer patients using Mistletoe therapy and a "whole body" approach. She also got me started on the Mistletoe injections there and then.
Two weeks later I got an appointment at Camphill and got started on intravenous Mistletoe. Compared to the injections which are 0.2mg, the doses are huge. I started on 20mg, which went up to 40mg, then 80mg. The last dose a week ago was 120mg after which I did have a bit of a reaction - shivery, fluey feeling for a couple of hours. This is good though as it shows that my immune system is beginning to kick in and fight for itself. The infusions are given in much the same way as chemo - through a cannula in the back of my hand and take a couple of hours to go through. The main difference is that I'm in a cosy wee room on a couch with comfy pillows and a duvet, so I either cosy down and sleep through it all or read my book until it's all over. Afterwards, I seem to have a lot more energy and just a general feeling of wellbeing, and I've been hearing some good reports about people who, statistically speaking, shouldn't still be here if it wasn't for the treatment, so fingers crossed...
My GP also agreed to give me a private prescription for a drug called Low Dose Naltrexone. This is licenced to treat drug addicts and alcoholics in doses of 150mg to dampen the effect of the high they get from their chosen poison and helps to wean them off. In smaller doses of 3 - 4.5 mg it's been found to help the symptoms of some auto immune diseases including MS and some cancers. Very, very simply, what it does is tricks the body into producing more endorphins, which trigger the production of more T cells, which in turn help the body to fight for itself. However, since it's not licensed for this use I was very lucky that my GP was willing to prescribe it at all. As it is I'll have to pay for it, but it's only about £30 a month which isn't much in the grand scheme of things.
None of these are miracle cures, but I think in the meantime they are the
best chance I have to have a good quality of life for as long as possible.
Even if I can stay at my present level of health without getting worse, then
I'd be happy and in the meantime, progress is being made in conventional medicine all the time, so who knows what's going to come along? The only thing I can't do is sit and do nothing and wait for it all to happen. It's not over till the fat lady sings, and we have her bound and gagged in the cupboard under the stairs at the moment!
I also had another stay in hospital a couple of weeks ago - taken in by
ambulance on the Thursday evening with a bleed from my wound (yes, 8 months on from surgery and I'm still having to have it packed and dressed every day!). Apparently
it's a side-effect of the radiotherapy, which can cause blood vessels to dilate. I was told that if it wasn't treated quickly, there was a possibility that they could burst causing a "catastrophic bleed" which could be "quite serious". As a result I had to have two blood vessels embolised (blocked off). Horrible, horrible procedure and I'd hope never to have it done again. I had a local anaesthetic then a catheter was inserted into a vein in my groin and a contrast solution was injected so they could see where they were going. I could feel everything that was being done and was in so much pain by the time I got back to the ward an hour and a half later that I had to be put on a morphine pump. I was kept in over the weekend (including my birthday - see previous post) and got out on the Monday.
So that's where I'm at.... I can't drive myself for any distance, but since I've started on the Mistletoe, I do feel a lot brighter, and can look forward to planning weekends away and, of course, THE WEDDING! He doesn't know what he's let himself in for!
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