So, as you could tell from my last blog (HERE) I had a big falling out with the hospital because they are inept. Anyway, at the exact time I fell out with them my surgeon had written to another Dr to see me about the drugs I take and am supposed to take (letter dictated 9 October and actually sent 23 November!!!!!!!!!!!!). That new Dr sent out an appointment without knowing that I'd told the hospital to go and f*ck themselves. So I went along to the appointment :D
It was very worthwhile. First, they confirmed that the blood clots in my left leg and both lung are caused by the tumours, almost definitely. That means I can re-start the drug (I had thought the blood clots in my leg were caused by the drugs I was taking, so stopped taking it until I could speak to someone. This was the first chance in 2 months I could speak to someone!!!) It turns out that when cancer appears in the body the blood coagulates in order to catch errant cells going off round the body and unfortunately that results in many people with tumours also get clots because of this.
So, I am to re-start the original drug. Dosage slightly changed. I am to start two new drugs. They will enhance the original drug, stop some of the nasty side effects and thirdly they will knock out my immune system. The lymphatic system has been in over-drive (which is why I never get colds, flu or similar). So, she did tons of blood tests (about 20 I think) to test everything. I am to go and get a flu and pneumonia shots, as my immune system won't be able to fight them off in the way it normally does.
So that was cool. Made me feel a lot better. I then got an appointment with a haematologist. That was great to go to, because this guy was really chilled out about the blood clots. I am to carry on injecting myself every day with 15,000 IU (I have no idea what that means - I thought it was milligrams, but it's not) of heparin every day for six months. He said it was all perfectly normal for someone in my position and I really should not worry about it. He was confident the heparin would stop the blood clots forming and would see off the ones that are there. As it is this specific type of heparin and as I inject it I can stop it and it will very quickly leave my system allowing for a new biopsy and if I suddenly have to start on chemo therapy (every doctor tells me what will happen if we suddenly switch and I have to start chemo, but they all are pretty chilled that this is unlikely).
So the position is that the tumour has grown and is now starting to impair my eye again. It is painful, but the tearing in my brain I had when the tumours were shrinking has stopped, though now I am re-starting the drugs it is likely to start off again - need some more morphine. I am unsure why, but it tears stuff in my brain as it shrinks, but not in my eye or over my sinus. In fact, other than being told and seeing it on the CT scan I would have no idea the tumour covers my right sinus. Never had a problem with that specific tumour, only the eye and brain tumours cause any problems.
The symptoms have only just re-started this week. So I am now back to sweating a lot and my vision is being affected. That is likely to calm down very shortly.
I do think I got a touch over the line into clinical depression. I was having a few problems with emotions, but I think that will sort itself out. Not sure how long the treatment will go on for, but I suspect a good year. Once the tumours are shrunk they will clean out the bones using radiation (the tumours are within the bone and have eaten away some bone). They elected not to do radiation in the end because it might burst my eye ball, so they want to use drugs and mop up the last of the errant cells using two or three shots of radiation. So, I get to carry on doing the job I love without too much of this side of my life impinging upon what I do both professionally and politically.
I am very angry at the hospital though. They're just in disarray. Labour did not fund them properly and then tories starved them of cash. It has not worked. But people will still vote Labour at the next General Election here in Manchester and will still be unable to understand why nothing ever changes!! But I am confident and happy going in to 2017 - it will be a good year. Not too happy about injecting myself every day, but I suppose it is better than having a stroke and dying, I guess.
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