A few people have suggested to me that I should change the title of the blog to something else as I’m doing so well but I haven’t beaten this thing yet, far from it, so I thought I’d write about living with terminal cancer as that is what I’ve realised I’m doing now.
Its a subtle change in view from trying to beat cancer to living with it but I’ve realised that I may never beat it, particularly as I continue to be denied any useful treatment. I need to get a few things in perspective and feel that writing about it might help.
Over the last few years I’ve tried quite a few things to beat this, but cancer is a sneaky opponent; it changes, it reacts to what I’m doing and mutates accordingly. I’m a firm believer that it takes a combination of approaches to have any chance of beating it, you have to keep the cancer on its toes; keep it guessing, make it work to gain its foothold, not let it become complacent. So I’m constantly looking for things that might help fight it.
I’ve seen a number of people seemingly recover from near death and think that they are clear (many are declared clear by their doctors) only to have a rude awakening when their cancer takes advantage of them dropping their guard and pounces again with usually fatal consequences. So I know my chances of beating this are pretty slim, that won’t stop me trying to beat it but as time goes on, fighting cancer takes over your life and wears you down. I know that there are things I should be doing with more diligence but I find it really hard to keep up the effort 24/7 and this can be pretty depressing.
So for the sake of my mental health I decided to have a review and change my mindset from someone trying to beat this thing to someone living with it, managing my cancer as best I can in order to live as long as I can with the best quality of life I can achieve.
Cancer has definitely taken over my life, I try and stop myself talking about it to people as it isn’t a very popular topic of conversation but its always at the forefront of my mind. I try not to rant about how useless the NHS is but it only takes the usual “Save our NHS, its so wonderful!” comments to set me off. It isn’t wonderful; its a massive money sucking monster that is hopelessly disorganised and inefficient. It provides far too many people with 6 figure salaries for anyone to have the inclination to change it, it should be be scrapped and built again from scratch but that will never happen in my lifetime.
There I go again.
I should be elated to still be here, I’m in no doubt that I am some sort of phenomenon. This form of cancer (cutaneous squamous cell carcinoma) is not rare but it only metastasises in 5% of cases. Where metastasis has occurred the mean length of survival is “less than 2 years” from diagnosis according to the NHS. Actual figures are difficult to obtain because metastatic cutaneous squamous cell carcinoma is so rare that nobody in the UK bothers to collate figures; neither the NHS nor Cancer Research UK know how many people get this form of cancer each year or how long they survive. Both organisations are only concerned with the cancers that affect tens of thousands per year, the rest of us have to just go home and die.
What I have is a nasty, aggressive cancer that kills almost everyone who gets it quickly, usually within two years. But I haven’t died, I’m still here nearly 5 years after diagnosis. Nobody quite knows why but unfortunately nobody is really interested either, saving lives isn’t top of the medical profession’s priority list any more; making money and/or making a name for themselves is the driver for most of them, the lives of mere patients are not of any importance.
Back on track, please; less ranting, more substance.
I’m not elated, I’m depressed. I seem to spend all my time chasing the bureaucrats in the NHS trying to get them to actually do what they are supposed to do. They have even made a mess of my complaint.
I sent a letter to the IFR Screening Group on 13 Sep 2018 demanding they reply to my oncologist’s letter of Dec 2017 or I would put in an official complaint. For some reason this letter didn’t go to the address on the letter and I received a letter at the end of September from the “Customer Contact Centre” in Redditch saying my letter had been forwarded to the IFR Screening Group (where it was actually addressed to in the first place) and would be answered “in due course”. Quite how a letter sent to an address in Newcastle found its way to Redditch only the NHS can explain (though they won’t). So it took more than two weeks to get to where it was actually addressed to, by which time I was already writing a letter of complaint.
I only found out what had happened to my September letter when my complaint letter (received by the NHS on 2nd October 2018) went unacknowledged despite their procedures stating it will be acknowledged by the 3rd day after receipt, so I phoned them up. What followed was the most ridiculous conversation where they waffled on about “putting your second letter with your first so it was missed”. I pointed out that the first letter was addressed to an office in Newcastle whereas the second letter was addressed to Redditch and that they were not related in any way other than the second was a complaint about the failure to reply to my oncologist (amongst other things) after the first letter had gone unanswered. Having phoned the number given under the Redditch address I was surprised to find myself being spoken to by someone in Leeds.
Confused? I certainly was. How do they do this?
I’ve now been told that my complaint “has been expedited” but I don’t believe a word of it as I was also told on 11 Oct 2018 that a response to my first letter had “been drafted and was awaiting review”. Unsurprisingly neither I nor my oncologist has received anything to date. A response to my complaint has to be produced by 6 Dec 2018, I have no doubt that it is not being investigated in any way, they are just trying to concoct some story to fob me off with. It is clear that the NHS’s strategy in this case is to drag things out for as long as they can in the hope that I’ll die in the meantime and the problem will then go away.
Anyway, living with terminal cancer, that’s what I’m supposed to be writing about.
I’m trying to get back to as normal a life as I can rather than rampaging about trying in vain to cure myself. I’ve become pretty isolated over the last few years as all the things I was involved in pre-diagnosis I gave up in order to fight this cancer. I am seeing a trick-cyclist from the Cancer Psychology Department in York which gives me someone other than my wife to rant at so maybe it will do some good but other steps are needed.
I’ve started to go the gym again as I haven’t had much exercise over the last few years and when I went rapidly downhill at the beginning of 2017 I lost 4 stone and my muscles wasted away. I’ve sailed in 2 National Championships since then but I was absolutely knackered at the end of each week long event. The gym sessions bring a couple of benefits; my body shape and stance is changing, I don’t slouch as much and my core strength is slowly coming back; I also get a twice weekly rush of dopamine which lifts my spirits no end.
I continue to work on our allotment which has been incredibly therapeutic for both me and my wife as it is calming and a great distraction. Even though it is a long term thing, it only takes an hour or two to do something and the rewards can be pretty much instant. I think the seasonal nature of growing things mean that although long term planning is something I avoid, the seasonal changes provide natural breaks so everything seems short term.
Which brings me neatly to one of the biggest difficulties of living with terminal cancer; long term planning is absolutely out of the window. I have no idea if I have 5 years, 5 months or 5 weeks left. so anything that requires any sort of longer term planning (and most things do) I can’t really commit to. The class of dinghy I sail have an annual jolly to Fowey, Cornwall over the late May bank holiday but I can’t commit to it as I don’t know what state I’ll be in by May. The last time my cancer got the better of me I deteriorated quite quickly, in a matter of 2 to 3 months, so I’m reluctant to book anything too far ahead. The same thing goes for skiing; I love skiing but I found out in February 2017 what it was like trying to ski whilst being pretty much incapacitated, it isn’t pleasant but it is expensive. Maybe we’ll go on a last minute booking if I’m OK, maybe not. We haven’t booked next year’s summer holiday for the same reasons, it isn’t difficult to decide where to go but it is difficult to predict whether I will still be around to go.
I’ve dropped all the projects I was working on and I’m reluctant to start them again because they will probably take longer than I may have left. My local history project is the one I regret most, I’ve done a lot of research work but haven’t put it all together. I have a few web sites in similar situations; nothing done for years. I have started doing some family history work again but nothing too long term. I know it will take me a long time to write a local history book properly but I’m reluctant to start as I doubt I’ll be around to finish it. The irony is that I’ve been putting it off for longer than it would have probably taken to write.
And its the same with most things. I probably have a dozen whizz bang ideas every day of which one is probably pretty good. But I don’t follow anything up because I don’t think there is any point. I have a handful of neglected web sites and a couple of domains for projects I didn’t get the chance to start, I keep thinking “I should really sort this out and then I could …” but again I just think “what’s the point?”.
I really need to get away from this line of thinking, it isn’t doing me any good.
So in terms of short term plans, I tend to look forward to the next event. I have just attended the 17th Gathering which is a get together of ex Royal Signals soldiers in York, most are ex-army (and above) sportsmen. I get to attend as I live in York and I’m friends with the guy who used to organise it. It’s a boozy weekend where the highlight is an afternoon black tie dinner, great fun and lots of laughs. Next up is my 61st birthday later this month, given I didn’t think I’d get to 60, I’m really pleased to reach 61 as you can imagine. Following that is Christmas, yet another one which is a couple more than I thought I’d see. After that, maybe some skiing but no firm plans. I’ve got a few things to build on the allotment over the winter before the next growing season so that takes care of short term plans. I might get some sailing in but I’m not very enthusiastic about sailing through the winter.
I continue to self medicate, I take Celebrex, AHCC and Cannabis oil every day without fail but I’m a bit haphazard about the rest of my regime. I do think I should take it more seriously though; I still eat pretty well; very little dairy, not much red meat and absolutely no rubbish. But I probably drink too much; I really like beer and wine but I know it really isn’t good for me. I do sometimes wonder whether I shouldn’t have another go at the extremely strict regime I went on when I was first told I was terminally ill with no treatment options, but I shy away from it as it was really tough to stick to.
Recently I had a look about for something else to try in an attempt to keep my cancer on its toes. I found a web site called Herbactive run by a medical herbalist by the name of Alan Hopking. He’s in the UK, seems pretty genuine and knowledgeable, so I contacted him. He was really helpful and gave me a list of things with dosages that he thinks could help me, so I might just give it a go.
So that’s about it; living with terminal cancer; its frustrating stressful and depressing, so you have to regularly take stock and gee yourself up to carry on. In an ideal world I would be getting treatment and support but we don’t live in an ideal world and the support structure for cancer patients in the UK is pretty non existent; its as poor as the standard of treatment. I see adverts in the press and on telly for organisations like MacMillan Cancer Support which seem to make out that they are there for cancer patients and spout platitudes such as “We’re here to help you live life with cancer” but the reality is that I haven’t seen or heard from a Macmillan nurse for about 2 years now, I don’t even know if one is allocated to me. Cancer Research UK puts out similar rubbish such as “Together we will beat cancer”, the reality is that they have been researching for drug companies using public money for over 70 years yet all the really good breakthroughs come from the US. I know I’m moaning, but if only the reality matched the guff put out by these organisations.
The NHS is the worst of the lot, on the bottom of every letter they send me refusing me treatment they print the strap line “Quality care for all, now and for future generations” which is complete bollocks and adds injury to insult.
I am still finding and buying music, mainly new releases at the moment and I’ve found a liking for “nu-jazz” which is all quite interesting. I still have a small box of my Northern Soul 45s left, all the best stuff has gone so this is the cheap or less popular stuff that is hard to sell, but it does still trickle out. When I sell one of these 45s for about £20 to £30 I spend the money on a new LP and I’m really enjoying it.
Anyway, lets try and finish on a positive note; I’m still here nearly 5 years after diagnosis and well over 3.5 years since I was given between 3 and 18 months to live. So that’s not bad is it? In February I will officially become a cancer survivor having reached 5 years from diagnosis which is pretty ironic. I’m relatively fit and healthy and only have the odd sign that I still have cancer. Things are actually pretty good if I stop and really think about it. I’m learning to live with terminal cancer.
Keep yourselves healthy, eat well, take exercise and enjoy yourselves.