Not had a particularly good month really.
I was pretty upbeat and optimistic in October and November; at the start of October I reviewed my regime and added a few things then in November I stumbled across a study that I thought might help as well.
At the start of November I started getting pains in my kidneys and after doing a bit of research I decided that the high doses of vitamin C might be the culprit so toned it down a bit.
I started on the new re-purposed drugs study in early November and that seemed to go well for a couple of weeks but I still had pains in my kidneys. So I stopped taking most of my normal regime supplements and continued with the drugs on the study and my kidney pains started to diminish.
At the end of November I visited Margate to see old friends, DJ at Soulgate on Sea, get a bit of sea air and take in some culture at The Turner, Margate. I also tried my hand at roller skating at the afternoon roller disco, (yes I know I’m nearly 60 but it might be my last chance). By the end of the night I was feeling pretty tired and had to leave the event a bit early.
In the third week of the study the doses of the various drugs increased and this finally did for me, by the end of the first week in December I had nearly every side effect listed on each of the drug information sheets: nausea, indigestion, stomach pains, back pains, tiredness, constipation (which turned quickly to diarrhea), shortness of breath and a general feeling of lethargy, to name just a few.
So I stopped taking the drugs from the study as well!
By this time I was completely confused as to what was causing each of the symptoms. I was pretty sure that I’d reacted badly to the study drugs but I wasn’t sure if the shortness of breath was due to them or my cancer spreading to my lungs. I still had some back pains but I’d had them before starting the study, though this was also a side effect of one of the drugs, and I’d also fallen over on to my back a couple of times roller skating (yes I know, shut up).
I’d noticed round about the time of my last scan that a couple of lumps had appeared on my body, a few more have appeared now, my oncologist said not to worry about them, but I am; perhaps they are causing my digestion problems, perhaps there are some I can’t see. They don’t seem to get any bigger once they appear, but they keep appearing. So I booked in to see my GP and spoke to my MacMillan nurse about getting a scan organised before Christmas, I need to know where I stand.
I had blood tests and a chest X-ray in mid December and a CT scan in the week before Christmas. The blood test showed I was anaemic with low iron but I haven’t seen the results of the X-ray (turned up on the wrong day for the GP appointment, doh!) and I get the scan results later this week.
After a couple of weeks off everything I started to feel better, I still had pain in my back but it wasn’t pain in my kidneys and my digestive system is recovering very slowly. So I started back on my original regime and added an iron supplement to try and sort out the anaemia. I still need to try and fight this thing, I’m not giving up.
About 4 days later the kidney pains came back so I knew it was something I was taking in my regime. It’s not the vitamin C as I haven’t started taking that again yet so after rummaging around the internet I found the culprit: Selenium. As well as kidney problems being a side effect it is also about the worst thing I could take given I have skin cancer. I think I read somewhere of someone who’d used it as part of their regime, so added it to mine, but looking again; they had prostate cancer (kicks self, reminds self to do homework before just shoveling things into body indiscriminately).
I’ve told the clinic in London about my problems and sent them the blood results, they want me to continue the study but I don’t think I will. I don’t want to feel that ill when I don’t know if these drugs are going to work and I also don’t think they have really looked at the problems I’ve had. I’ll decide in the New Year.
On the plus side, I ordered my new British Moth from John Claridge Boats and hopefully it will be ready sometime in February. I’ve been selling my Northern Soul collection to pay for it (so that’s what it is going to be called; “Northern Soul”) but haven’t had to sell as many records as I thought as they are reaching such ludicrous prices. I sold my Streaker just before Christmas as well so I’ve raised all the money I need without touching my pension money from the Army.
I’ll put up another post in a few days with the results of my scan and we’ll see where I am in the New Year, at the moment I’m feeling good and optimistic so hopefully that will continue.