Today is the 4th Anniversary of being told I was terminally ill, with no treatment options and given 3 to 18 months to live! That is worth a celebration I think.
I’ve been meaning to write about “the new normal” since February but other things got in the way; the BBC’s atrocious piece of journalism on the Hallwang Clinic; NHS England refusing funding for my treatment yet again; and having treatment itself which I’ve responded marvellously to again.
So this post is going to be an explanation of what I think is the new normal and what my wife and I are trying to do.
Life over the last few years has been a complete roller coaster; being told I’m terminally ill and might only have a few months to live; managing to live longer than the most generous prognosis with a relatively good quality of life; being almost at the point of death in early 2017 then having treatment that almost cleared me of cancer; thinking someone in the medical profession would be interested in my response and assuming my treatment would be funded; then finding out that nobody was interested and NHS England are just bureaucrats who have been told not to fund anyone’s treatment; fighting for funding for over a year and just getting refusal after refusal, worrying about how I am going to get treatment and how we’re going to afford it; deteriorating again with no prospect of treatment; then our local hospital agreeing to treat me if I fund the drugs; accepting, having treatment and responding really well.
That has been the last 4 years of life for myself and my wife and we are both heartily sick of it. I’m still alive and we have had some good times but living like this, not knowing what the next twist and turn will bring has taken its toll on us, physically and mentally.
In January we went through the surreal experience of putting in place three different plans as I was deteriorating with no prospect of treatment.
- We contacted Macmillan and arranged to be registered with a local hospice. There was a real likelihood that I would die this year, possibly within a few months.
- We engaged a solicitor to challenge NHS England over the funding refusals which we and he thought were ludicrous.
- The solicitor put us in touch with a doctor who would treat me privately in the UK, but the cost was pretty high. So we looked at raising the money and set about arranging the treatment.
In February things changed: we were told by our local hospital that they would treat me if I funded the drugs. This was significantly cheaper than having it privately so we jumped at the chance.
We realised that being treated locally would give us some stability so we sat down and discussed how we could make our lives more enjoyable and less stressful.
We’d been trying to do this for a while. We’d spent some really enjoyable time in late 2017 and 2018 working on our allotment which my wife had put her name down for a couple of years previously when she thought I wasn’t going to be around much longer. Here’s a link to our youtube channel.
We’d also started going to the Gym about September last year, I was getting stronger and fitter but in December found that I was having to use less weights and run slower as I deteriorated. I stopped going as I could’t face doing it. We’d been going together and so Helen didn’t go as much either.
In March after we thought our solicitor had got us somewhere with NHS England we realised that they were just going through the motions and would probably never agree to fund my treatment. There’s no way of appealing their decisions or presenting your case personally so only thing to do was take them to court for a judicial review. Unfortunately the cost of doing this and the risk of losing and being liable for their costs meant, like many others in the same position, we had to reluctantly drop our legal challenge.
This is where the new normal comes in. I need to come to terms with my condition and live accordingly. I doubt I’ll ever be cured of cancer (I don’t think anyone ever is) but with treatment it can be managed to give me a good quality of life. So I need to learn to live with it, lower my expectations a bit and we need to take more time enjoying ourselves and less time dealing with cancer.
We realised that apart from eating in airports and Premier Inns we couldn’t remember when we went out for a meal together just for an enjoyable thing to do. So we’ve been out for a couple of not very cheap meals together! We went out for a beautiful Sunday lunch yesterday, because we can!
Cultural activities have been sparse for years too! So we went to the theatre the other week, we now go to the cinema once a week providing there’s something worth watching and we’ve booked to see a couple of Shakespeare plays at the pop up theatre in York in the summer. I booked us tickets to see Michael Buble in Leeds at some heinous price. Unfortunately this was while I was on steroids and a bit hyper so not only does it coincide with my last treatment day but also with Helen’s birthday. I’ve put them up for resale but unless they sell I could be having side effects at the back of the O2 arena while Michael croons at the front. I also need to make time to go and see what is on at the Art Gallery ad Museums in York, these are excellent but I’ve always thought I was too busy; no more!
The Allotment keeps us busy but I’ve stopped thinking “I must do this, I must build that” and I now just do what I can. I rest regularly rather than going at things like a man possessed, sometimes I just sit and enjoy the surroundings. Its really therapuetic and things we plant do grow, which is nice.
I go sailing now and again but I’m not fit enough to do more than one or two races or cope with a decent breeze. So I only do what I can manage, I enjoy sailing and am still fairly competitive. As I recover I might have the chance of competing a bit more strongly, but if not I’m still going to enjoy it.
I haven’t bought any clothes for years because I didn’t see the point. The other day I went through everything, sorted out my wardrobe so I can find things and piled stuff up that I’m going to throw out. Then I went out and bought some new clothes!
We’ve been wondering what to do about holidays; will I be fit enough etc. But I’m fine at the moment so we booked a holiday to coincide with the end of my treatment, leaving enough time for side effects and recovery. So we’re going to Gran Canaria for just over a week with the intention of doing absolutely nothing. We normally go to Cyprus in September but we’ve done that for about 20 years so we might have a change. Don’t know if we are still fit enough to go skiing next years, we’ll wait and see.
We’ve hardly used our camper van as a camper van at all over the last year or so, the last time was at the 2018 British Moth Championships last August. Its been used to take stuff to the tip and carry compost etc to the allotment. So we’re hoping to give it a clean out and get away for a few days here and there through the summer.
Although I had to sell my Northern Soul 45s collection to help fund my treatment, I still have my LPs. Whisper it quietly: I still buy the odd one or two, financed by the trickle out of the remainder of my 45 collection; the lesser valuable and less desired records. So I had a bit of a sort out of my records and organised them. I used to put mixes together from my Northern Soul collection but haven’t done one for over 3 years. So I thought I’d put together a mix of largely joyous and uplifting tunes from my LPs in celebration of still being here. I appropriately called it The Lazarus mix.
I’ve started writing the local history book I’ve been meaning to write for ages. I’ve put this off numerous times on the basis I won’t live long enough to finish it. It would be published by now if I’d started back in 2015 when I said I would. I write little and not often enough, but at least I’m writing.
We’re reviewing the Gym membership at the moment but I’d like to start going again. But I need to change my mindset as far as going to the gym is concerned; I have to start looking at it as more a means of getting exercise than a requirement to beast myself until I am knackered. I don’t need to increase weights as I go along, I’m not trying to compete with anyone or impress anyone. I’m over 60 now so slowing down a bit isn’t something to fret about. I have no intention of running a marathon so I need to convince myself that walking and jogging on the treadmill is all I need to do, I’ve already learned that trying to compete with the guy on the next treadmill is a waste of time! The gym has a swimming pool, I used to play water polo but now I need to get used to that I’m not training to challenge Michael Phelps but just leisurely do a few lengths for exercise. There is also a steam room so I should make use of that too.
As far as the hospice is concerned, it turns out they are not just a place to go and die in, they provide complementary therapy too, so I’m heading to see them at the start of June with a view to learning about mindfulness. I’m not sure whether it is for me but then again I might just turn into a hippy! Well a smartly dressed hippy anyway.
Fighting NHS England has achieved nothing other than cost us time, money and my mental health. It is just frustrating and stressful. They are not going to fund my treatment because they don’t fund anyone’s treatment, unless they are forced to, or will get some good publicity out of it, so I might as well stop wasting what is valuable time.
I might be having to fund the drugs element of my treatment but at least I am being treated locally and by the NHS. The local trust are largely on my side so I’ll try and work with them to find a solution to this issue.
New treatments are slowly being authorised, so our strategy is for me to stay alive long enough for them to be available to me on the NHS. Cemiplimab (similar to Pembrolizumab) is already approved in the U.S. on my condition and recently got a restricted approval by the European Medical Agency (EMA) so full authorisation is not far away. It will take some time for NHS England to catch up, but they will. There is no other licensed treatment for my condition and there are so few people with it that cost of treatment should not be an issue. So we’ll wait it out, if necessary we’ll fund another round of treatment locally before I deteriorate again.
There’s also a political revolution in process in this country at the moment. A new government might not look too favourably on an organisation that seems to just be a gravy train for the middle class and is headed by someone who used to advise David Cameron on privatising the NHS. Andy Burnham predicted the current state of NHS England back in 2009 when he called them “The World’s Biggest Quango”. Time has proved him right and given all the recent and current scandals being uncovered, their days could be numbered under a socialist government. I’ll help them empty their desks with relish!
So I’m not wasting any more of my energy and time fighting NHS England as it does me no good and has largely got me nowhere. I still take the mickey out of them and abuse them on Twitter; it probably doesn’t register with them but it makes me happy and adds to the growing number of people criticising them (patients and staff).
So that’s it really, we’re working on a new normal in an attempt to live as normal a life as possible.
I’m a much less stressed and angry person now I’ve realised I should enjoy myself more, my wife Helen also likes me again.
Maybe I shouldn’t have spent so much time fighting NHS England but my psychologist did suggest that it was the fight that was keeping me going and there is probably some truth in that. But I’ve taken it as far as I can and its treatment that keeps me alive so that’s what we are concentrating on.
Onwards and upwards!