So here we are in 2019, somewhere that I didn’t think I’d be a couple of years ago. I thought I’d do a bit of a look forward, however; I’m not looking too far forward.
Just before Christmas I received my latest scan results over the phone, they weren’t good. Everything has got a bit worse, which is no surprise really as I have had no treatment for a year.
With impeccable timing the NHS informed me (by email) just before Christmas Eve that my latest Individual Funding Request (IFR) had been declined. Yet again it was screened out by the IFR Screening Group, despite the fact that they had invited the request to be resubmitted. They have changed the policy they apply and this also means they will no longer correspond directly with patients, so I’m waiting for them to send the relevant paperwork with an explanation to my oncologist so he can forward it to me.
I can’t even begin to guess why it has been screened out this time, the IFR Screening Group are only supposed to screen for exceptionality. It would seem that managing to live 3 times longer than almost everyone who gets this condition is not exceptional, neither is being the only person in the UK with my condition to have received the treatment I’m trying to get funded AND demonstrated that it works, and neither is being 20 years younger than the average age of patients who get the condition. I shall look forward to finding out their excuse this time (no I won’t) and will do a separate blog post on it.
So it is safe to say that without any treatment I am highly likely to die this year without some sort of unexpected miracle. I have to say that I feel beaten by a system that seems to be designed to deny people treatment, it is hard enough having terminal cancer without a completely uncaring, unaccountable medical system to deal with. There is no licensed treatment for my condition but the NHS don’t care as not many people get it. Many people with a rare cancer are in a similar situation, I’m on the brink of just giving up; I just want all this to end.
I still have a lot of admiration for the doctors and nurses that actually treat me, I’ve just had 5 blasts of radiotherapy on a lump on the back of my head and everyone has been brilliant to me. But once you are past those front line stars, what is behind it is an unaccountable, disorganised mess. Simon Stevens (NHS England Chief Executive) recently praised all the wonderful NHS staff working over Christmas. What he failed to mention was that they do not work for him, they are employed by the individual NHS Trusts who are independent of both The Department of Health and NHS England. He is just taking credit for something he has nothing to do with, not unusual amongst quango mandarins. What he fails to mention is that because of the disorganisation initiated by NHS England the UK’s medical service is currently lurching through its annual “Winter crisis”, something that no other medical service in the developed world experiences.
Anyway, enough of the doom and gloom, I have been pretty depressed but I’m trying to drag myself out of it and see what else I can do.
I do have quite a few options surprisingly, so here they are:
- Challenge the IFR Screening Group’s decision – obviously this depends on what they have dreamed up this time and it also depends on the cost of doing it. I can take this to a judicial review as long as I do it within 3 months, however it will be expensive (solicitor & barrister) and I don’t know if I still have the drive to do it. I think I would only go forward if I thought I could get a sufficient level of compensation to fund further treatment in Germany. I’d prefer that to treatment by the NHS as my experience is that the NHS don’t have a clue what they are doing when it comes to immunotherapy treatment.
- I’ve approached Bristol Myers Squibb about compassionate access to their drugs; they make Nivolumab (very similar to Pembrolizumab) and Ipilimumab. My oncologist is currently dealing with this. We tried before with Sanofi (who make Cemiplimab) but as their drug is still in trialls they were reluctant to give anyone outside a trial access in case it jeopardises their licensing application. We don’t have that problem with Bristol Myers Squibb as their drugs are both already licensed.
- There is a clinical trial currently recruiting for combination immunotherapy drugs on people with advanced cancer. I might just be eligible so I’ve asked my oncologist to try and get me on it.
- I’m re-visiting my health regime; cutting down massively on my alcohol intake and making sure I eat really well. I’m looking at the supplements again as well.
- I continue to shovel cannabis oil and paste into my body, I’m sure it is doing me good but I’m not sure if it is working on my cancer as fast as my cancer is progressing.
- I’m going back to alternative therapies so I’ve ordered some herbal remedies from herbactive. The guy seems pretty genuine; I contacted him, told him my issues and he recommended a few things. I’ve nothing to lose so I might as well give it a go.
- I’m also looking at Mistletoe Therapy (stop laughing, this is serious). Despite sounding like the ultimate quackery it actually has a reputation for helping cancer patients feel better, and some anecdotal evidence of curing people. It is actually being prescribed by NHS Scotland to some patients. Due to UK laws nobody can actually claim that Mistletoe Therapy can be used to treat or cure cancer so it is always described as “complementary therapy”. I’m investigating the costs and practicality for the moment.
Putting My Affairs in Order
I’ve avoided doing this until now as I wanted to stay positive about surviving, but I don’t believe I’m going to survive much longer so it makes sense to sort things out.
Putting my affairs in order should be something simple to do but I’m finding that it isn’t. I didn’t realise how much I had complicated my life. I have a number of websites up and running which I need to retire, I’ve neglected them for the last few years but had recently started sorting them out, planning what to do with them; no point now. I use 3 email accounts for various things and have 3 PayPal accounts associated with them. I’m trying to get rid of and close down as much as possible of my online presence as I can so my wife is not burdened by it.
Our biggest headache is our business; we own a pub which we used to live in and run, but now lease out. The lease only has 4 years left then it reverts to us, so we started a refurbishment program this year, replacing the windows first and then plan a number of other jobs over the next couple of years. However we might just need to get rid of it this year.
I’ve got 2 dinghies; one of which is very new and one which needs putting back together again. No idea what to do about them.
There’s a whole host of other things that need dealing with; various software contracts, all the rubbish I’ve accumulated over the years, the campervan and the elephant in the room; my record collection.
Its all very depressing closing your life down. I stopped planning ahead some time ago as I know that this thing comes back quickly and I won’t have long when it does . But even so, I have a couple of half finished projects that I now realise I’ll never finish. It’s difficult to remain positive.
Reflection and Look Forward
Despite what a number of people think 2018 was actually the best year we’ve had for ages. I didn’t have to travel anywhere for treatment, we had a number of great holidays, I had very few needles jabbed into me, no hospital stays and I’ve been fit and healthy. I’ve really enjoyed working on the allotment; building things, digging and enjoying the fruits of our labour, its been very therapuetic. I’ve got quite a bit of sailing in, including a National Championships and winning a trophy at the club. I’ve really enjoyed myself for the most part of this year and I enjoyed Christmas & New year despite the NHS trying to make it a crap one.
Next on the horizon is the skiing holiday we booked in December, we knew we were taking a risk when we booked it but, fingers crossed, I’ll still be fit enough to ski at the end of January. We’re going on the Eurostar to France, staying in Belle Plagne which we know well; plenty of easy skiing and a nice place to be.
I haven’t got anything else planned as I have no idea how long my current reasonable state of health will continue. I’m sorry that this is generally a depressing post, maybe I can blame the fact that the radiotherapy has left me a bit tired. Maybe I’m just depressed.