Well, here we are again after a year of political hay making. It has been an incredible year. But in the midst of all of that, we also had to contend with Tina Tumours. I will be doing a political update shortly, but thought I should round it off with a review of the events since August.
It is really weird thinking that for nine months of this year I have had the tumours to contend with. I first started noticing it in about April, thinking I had conjunctivitis coming on, which I have had two or three times historically. I remember every day at work with my work colleague Sue out having a cigarette, the annoying swelling in my eye would be commented upon most days. Then I saw a Dr and he said it was hay-fever, so I left it. The swelling got worse and worse, to the point that my eye was pushed out so far I got double vision. The problem is, we had a referendum going on and I was just so damn busy. But, when the double vision was too much I went back to the Dr and got referred on. Then that day happened. 9 August 2016.
My abiding memory of it all was when the Dr had left the room after we had seen the CT scan. I just sat repeating to myself over and over "Oh shit, oh shit, oh shit". As is evidenced in the first Blog on the subject, it was just so f*cking HUGE. It was massive. How the hell had something so massive grown? How the hell did a Dr think it was hay-fever?
The first two telephone calls were the hardest - the first to my friend & travel agent Helen. I had to cancel my holiday, which was 4 weeks away. The first time I said it was hard. The second call was to my best friend, and that was a much harder call.
So we went through the tests and the biopsy and more tests. The most painful was when they took a core sample of my hip bone. They literally took a sample from one side of the bone right through to the other. Thankfully I had gas and air, and damn was it good :D
Throughout all of it my best friend Elizabeth was with me. For that I will always be eternally grateful to her.
So where are we now?
We were originally going to treat the tumours with radiation. But the oncologists thought that due to the size I was likely to burst my eye-ball, so they wanted to do something less drastic. The drugs have reduced the over-all size of the tumours, the biggest being around the eye. But the drugs I am on are quite toxic, so I have to go on another round of drugs in January to stop the side effects, one to increase the work done by the first and one to close off the lymphatic system. That last one is an immunosuppressant drug. I had actually forgotten that that course of treatment was one of the first suggested - I only remembered re-reading blog one. They hope that will stop the growth. I am not looking forward to it. I do not get colds or flu because I have a fantastic immune system, so losing that will be daunting.
The blood clots appear to be under control. I have not had any more in my leg since November. I had about four - three in my left leg and one in my right foot. And I can tell you, it really, really, really f*cking hurts like you would never believe. Then the three in my lungs are the main worry, but they have never caused me any issues - we only knew they were there from the CT scan in September - though no-one told me until November about it because the hospital was just too busy to actually write up the report on the CT scan. I am hoping there isn't anything else they missed. The oncologist had to ring up and apologise that they had over-looked it for two months and ask me to hot foot it down to the hospital pharmacy to pick up drugs.
I am officially at three hospitals - Christies, Eye Hospital and Manchester Royal under four different consultants. The tumours cause the problem of short term memory problems, which now appear under control, sweating too much, blood clots and high blood pressure. I have always, always had perfect 120/80 blood pressure, but it has been raised significantly for some time now, so my GP says we are going to have to start yet more drugs to combat it as it is far too high and appears now to be permanently high,. As at yesterday, I have to check my blood pressure twice a day for two weeks and my GP and consultant will work out how to treat it.
I hate having to stick myself every day with heparin syringes for the blood clots. I am to do this for six months.
But, despite all of this, I am healthy ish and it is only causing me real issues on pain control, fits and now to a lesser degree memory. Christmas Eve, as many of my friends know, was horrendous. I have never had pain like it. 40mg of morphine did absolutely nothing. It started easing by lunch-time on Christmas day. Fortunately I do not do Christmas, so did not ruin anyone's Christmas with me writhing about in pain. The pain is in the tumour attach to the brain. I think it is as the tumour shrinks it is pulling itself out of the brain and that's what causes the intense pain - though that is my view - I might be wrong - it might be growing, but as I did not have that before the drugs started, I have to assume it is shrinkage causing it. I have had a lot of pain with the tumours before, but this is getting worse. The intra-orbital tumour (the one in and around my eye) caused massive crushing pain. I no longer have vision problems, though I do know that it has caused substantial damage to the optic nerve and the bone structure. The tumour over the sinus has grown substantially (relative to its size) and has now blocked the sinus on the right side. With the loss comes a loss of smell - but I suspect that is just because of the lack of breathing through the sinus rather than damage to the nerves that allow me to smell. I never looked at the sinus on the last scan, so will be interested to see what the next one shows around this region.
So the plan for 2017 is keep on with drugs, stop the immune system for a while and see what happens. There is supposed to be a new biopsy, though I do not know when. They want to make sure it has not changed - part of the reason I have to inject heparin rather than oral tablets is in case we need to quickly switch to chemo. Thankfully right now chemo is not the favoured option of any of them, but the oncologists think it is likely if the tumour changes. And they want this new biopsy, so being on a short acting anti-coagulant will allow the biopsy to be done with relatively little notice and chemo can be started relatively quickly by just stopping the injections for two or three days. If I were taking oral tablets then that time-lag would be much longer - and if they want/need chemo they want as little a time frame as possible to get it started.
So how am I? As I note above, I am actually quite good health wise. I have a few minor issues, but aside from that you would now not be able to tell anything is wrong with me. The pain is my only problem, but that appears to be caused by the tumour reducing in size. I would far rather have pain from it reducing than pain caused by it growing. And that is my over-all opinion - everything about it is positive. It appears to be shrinking, it appears not to be spreading and it appears, with the immune suppression, it will be treatable without chemo. It will need radiation at the end, of that I think everyone is 100% in agreement, but to reduce its massive bulk we are able to do it with a lot of drugs - and I am so glad we can do that (drugs) rather than chemo. Having to do chemo would have really screwed up so much. I love my new job and would have been crushed to lose it. I am fairly sure they would not have been bale to keep me on if I had to go part time (yes, you can work part-time these days with chemo only taking up a 2 day hospital stay - I was amazed, but the oncologist said he had no doubt I would have been able to work if we needed to do that). So yeah, it is to me all positive. Right at the start it really looked to me to be the worst case scenario - so the fact that it is the exact opposite leaves me very, very positive.
And on top of that positivity I have some really, really supportive friends. The support I have had has been amazing and really, really touching. Even when things were really gloomy for me - and I did at one stage tip over into depression - the support I have had from friends has been amazing and touching. So a big thank you. I really think I have been so positive about it all because of the support I have. The road is likely to take well over a year, but with friends like I have I can take that :D
Happy New Year everyone. Despite the tumours, 2016 was actually one of my best years ever. Amazing result in the referendum, more and more amazing friends from politics and over-all a hugely positive year. The tumours will not stop that - and I could not have done it without my friends.
As a side note I have to say the NHS is awful. It is falling to pieces at the seams. Manchester's NHS has been massively hit by cuts and I genuinely do not think it can continue. They do not have the staff numbers, they are chronically under-funded in every aspect. Something will give. Manchester's Mental Health trust is bankrupt. People have needlessly committed suicide as a direct result of it. Despite what the staff do, the under-funding of the NHS in the UK - but especially in a socially deprived city like Manchester - means that it can only get worse and more and more people will die as a result. Despite that it is both a Labour & a Conservative problem, I would expect people will continue voting Labour & Conservative and wonder why it never gets better. The staff working for the NHS are amazing people, but the under-funding is killing off the NHS. If something is not done very soon it will be a terminal deterioration.
edit: one thing I forgot to write when I did this blog earlier today. "Cancer" is something that really is weird. Right from the get-go it was always "tumour" or "tumours". But then occasionally a consultant or Dr would talk about cancer. Despite knowing the tumours are cancer, I have to say, it has always been a cold shiver down my spine when Tina Tumours is discussed in terms of cancer. Is it because I say Tumours and try and hide from myself how bad it is? Maybe. Is it because cancer is such a bad word? Maybe. Maybe it is because I have never really got my head round it (did you see what I did there? Lol) or maybe I have hidden from the seriousness of quite how dangerous and precarious a position I really am in. I don't know, but I really detest hearing the word cancer, and when it used instead of tumours I lose the smile from my face, for a moment, quickly recovering and laughing it off. It really is hard living with cancer. I am fortunate that it has such a relatively speaking small impact upon day-to-day activity that I suppose I am fortunate. On certain days though when I can't walk or when I am recovering from having fits, I do remember. Some things are just best not recalling & remembering. I do not intend being a victim and I will not be.
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