The other day someone commented on my previous post and said “I look forward to your future posts”, they also emailed me and said they hoped my scan results were good. I realised I hadn’t written on here for a month! I have updated my Fund Raising page but even that isn’t up to date.
So this is what has been going on since just before Christmas.
Scan & Results
I had my last of 4 treatments with Pembrolizumab and Ipilimumab at Southampton in early December, my consultant said he wanted me to have a PET CT scan before Christmas and we booked an appointment for a consultation on 4th January 2018 by which my scan results should have come through.
As Christmas approached and I had heard nothing I started chasing things up but couldn’t seem to get anywhere. So, thinking I wouldn’t get the scan until the new year, I moved my appointment to the 11th Jan. Within an hour the company that the NHS outsource PET CT scans to phoned and arranged a scan for 22nd Dec 2017. So rather than mess about moving my appointment back I just went with what was organised, booked a hotel and train tickets to travel down on the 10th Jan and return in the afternoon of the 11th.
I had the scan and tried to put it out of my mind over Christmas, then headed down to Southampton to get the results. What ensued was a fairly typical farce engineered by the NHS. In brief, my appointment was for 11am, my train was at 1.30pm, unfortunately I hadn’t allowed for the fact that it is standard practice in the NHS to book 4 people in an hour when they are only capable of seeing 2. As 11 came and went I told the nursing staff about my train, they said that my consultant was “still seeing his 10 o’clocks” but they would let him know about my predicament. Unfortunately, the method of communicating they used was not to walk 5 yards across the waiting room and tell him, it was to scribble a note and attach it to my patient notes, which he wouldn’t see until it was my turn in the lengthening queue. At just after 12:30 I said that unfortunately I had to go and get my train and asked if they had actually told my consultant about my train. This was when I found out about the scribbled note. I questioned whether this was actually an efficient means of conveying urgency to which the nurse said “well, i did highlight it!”.
Knowing when to fold your hand is a key skill when playing poker, it was clear that I wasn’t going to get anywhere so we headed for the train and came home. 2 days and about £250 wasted.
I eventually got my results by email on the 17th Jan and they were somewhat disappointing. Apparently there had been little change in my condition since the last PET CT scan done in July – the treatment hadn’t worked.
I’ve got no worse though and I still feel really well, but I’m back in the limbo of not knowing what to do next and having few funds left to do it with.
The IFR Saga
My last post on the IFR farce finished with me having to contact my Leeds oncologist to ask him to request an explanation from the IFR Screening Group as to how they reached their conclusions given the content of the IFR (clue: they could not have done so). So I emailed him and he wrote to them on the 18th Dec, to date he has received no reply. Anybody surprised?
In an idle moment between Christmas and New Year I decided that as an individual I was going to get nowhere with a bureaucratic organisation like the NHS who are adept at giving out excuses, fobbing people off and making statements that everything is wonderful when they clearly are not, so I wrote to my MP Rachel Maskell.
Rachel Maskell worked in the NHS so clearly understands its workings so I hoped she might find my situation as bizarre as I do and support me. So I wrote a short, 8 page letter and emailed it to her. I did actually cut it down to 8 pages but felt I couldn’t reduce it further without losing some of the impact. I tried to give as much background to my reasoning and back up what I was saying so that there wasn’t much further research required.
She was extremely sympathetic and emailed me back almost straight away. I clarified a couple of things then printed and copied everything and dropped them off at her constituency office. She in turn wrote letters to the Secretary of State for Health; Jeremy Hunt, the chief executive of NHS England; Mike Stevens and the accountable officer at The Vale of York Clinical Commissioning Group (CCG); Phil Mettam essentially asking them to support the funding case and also report on the other concerns in my letter.
The letters were written on 9th January 2018, I haven’t heard anything since so its probably about time I asked if there had been any response.
I’ve also decided to complain, not just by ranting on this blog but to put in an official complaint (or 6). I’m certainly going to complain about the IFR farce but I might think of a few other things while I’m about it.
Whilst hanging about in York Hospital in December waiting for my step father to be seen in the eye clinic (3 hours later than his appointment as it turned out), I noticed on the myriad of notice boards that the corridors are filled with (no shortage of funding for notice boards it seems) a display from York Advocacy Hub. “Do You Have a Concern About Your NHS Care?” – Yes I bloody do!
It takes up a lot of your time chasing round after care, traveling to get care, worrying about paying for care etc. etc. So I thought it might be good to get some help, so I emailed them and received a couple of pretty incoherent emails that essentially told me they only help people with mental health issues or “sensory issues”. Now this isn’t quite what their web site says so I phoned them up, explained my situation and in all seriousness said it probably was starting to affect my mental health, I need some help. An NHS advocate is going to call me next week.
I’m also thinking about taking the NHS to court over the IFR farce. It’s been done before: https://www.theguardian.com/society/2017/aug/08/court-rules-against-nhs-over-drug-funding-for-boy-with-rare-condition.
I was also contacted the other day by someone with a completely unrelated condition to mine who had received a letter from the IFR Screening Group that was evidently word for word the same as mine. So maybe my conspiracy theory of the IFR Screening Group only existing to save convening a national panel isn’t as far fetched as I thought. Still looking into this.
Personally, I think the IFR Screening Group should be held accountable for their decisions, have to explain the reasons for their decisions to patients and their should be some method of appealing their decisions. At least 2 of those things are in the NHS Constitution so it isn’t a lot to ask. I’ll keep prodding them anyway.
What next? I don’t know!
From the scan results it looks like the bit we missed out; the vaccination strategy, may have been the key to my previous response. We don’t know for definite though. But clearly just continuing as we are is not really sensible as it didn’t work.
I did manage to do what I thought was impossible; I managed to get the Doctor at The Hallwang Clinic and the oncologist in Southampton to speak to each other and discuss my treatment. Given that any consultant in the NHS tends to rubbish what The Hallwang do and that the doctor at the Hallwang tends to laugh at what the NHS do, it was probably a phone call that metaphorically resembled two stags rutting. However they seemed to have at least had a dialogue.
My options at the moment are:
- Go back to the Hallwang Clinic for another round of treatment as before to try and get clear – this isn’t feasible as it would cost me at least £125,000 and I haven’t got that unless we sell our house. But it is my favourite option.
- Increase the dose of both drugs and continue treatment at Southampton – not sure this is worth doing as I might just be throwing good money after bad (I still have to fund the drugs and larger doses mean more money), it hasn’t worked this time round.
- Combine the two; drugs at Southampton and vaccination with infusions at The Hallwang – this would cut my costs but would still cost me around £70,000. I need to do my sums to see if this is doable and it means a ton of travelling.
- Get funding for treatment on the NHS – I think I might achieve this but it will take time and I don’t know if I have time, as someone said to me the other day “cells don’t wait”. Given that the funding applied for was for the last round of treatment, will I need to submit another request? This requires one of my oncologists to do this and both are reluctant as it takes a lot of their time up and they consider it a useless process that is never successful. Can a cost be put on the vaccination strategy when we don’t know what the vaccine was?
- There is a clinical trial coming up for people with any form of cancer, to test a combination of a drug similar to Pembrolizumab but developed by Roche instead of Merck (this must be the future of cancer treatment as all the big pharma companies are developing and trialing immunotherapy drugs) together with a personalised vaccine. This requires a sample of my cancerous tissue and most of what is left is difficult to access without opening my chest up and getting my heart out of the way. I do have a small lump under the left side of my chin which might be useful, it was present before my scan but I don’t know if it showed up or not as I haven’t seen the images. The trial is global and has a base at Southampton so my consultant thinks I should do this. It would only cost me for the travel but could go on for ages and might not work.
- Do nothing – very tempting but I’d like to try and live a bit longer, however if that means becoming a perpetual patient having to constantly suffer from the side effects of pretty toxic drugs then this option might become the preferred one.
I think the third and fourth options are the most feasible although if I had the money I’d just head back to The Hallwang Clinic. We’re going to get the lump taken out and tested as it is needed for the trial (which actually hasn’t started recruiting yet but will do in the near future) and it may provide us with useful information anyway. So a stay in hospital somewhere soon is on the cards – Oh Joy!
Life in General
Contemplating my disgust at the bureaucratic side of the NHS is actually pretty depressing.
One of the reasons I haven’t written anything on hear is because I decided to write a post on the structure of the NHS because I realised I didn’t understand it. It has become a millstone! Every time I sit down to write it I find yet another part of this strange beast that is the NHS and try and work out what it does and where it fits in. The more I work it out the more it annoys me.
I also find my own situation disgusting; I know there is a cure for my cancer as I have experienced it, but I can only have it if I can afford it. I could at first but now I can’t. There are many, many people in a similar situation – they can be cured but only if they can personally afford it. This is the complete antithesis of why the NHS exists.
I feel absolutely brilliant at the moment, I haven’t got any worse since I finished my treatment at The Hallwang in June 2017, if anything I feel better as time goes on. But I know I have cancer and I know it could come back at any time and finish me off and I’ve seen how quick that happens and what form it takes and it isn’t pleasant. It’s quite a paradox as I am not what people expect to see when they think of a person with terminal cancer.
But the way I’m trying to view it is; at least I know I have cancer, I am trying to do something about it but at least I know. Almost 1 in 2 people will get some form of cancer and many don’t know they have it until it is too late. There must be thousands of people with cancer wandering about completely oblivious of their medical problem. Many are happy, fit and healthy, it’s only when they are told the have cancer that things change for them.
So I’m trying to approach life from the other view, I have cancer but I feel fit and healthy so lets get on with life and enjoy it!
I am pissed off with the NHS and I am pissed off that I’m not wealthy enough to afford the cure and I am pissed off that I don’t know what to do next but as the marine said: “F*ck It!”
I made it to my 60th birthday which 3 years ago I thought I had no chance of doing.
Christmas was just fantastic, last year we went round to Helen’s brother’s which was great as I was deteriorating, so they came to ours this year as did Helen’s mum. We even had a visit from our nephew Tom and his wife Laura whose wedding we went to in July last year (something else Helen thought she would be attending alone), and he brought champagne! He can come again.
It’s still too cold to sail (for me anyway) but I’m looking forward to sailing my dinghy through the Spring and Summer, I want to try and beat my 9th place at last year’s National Championships this August. I’m completely unfit due to a mixture of muscles wasting away in early 2017, lack of exercise generally and 3 years of battling cancer. But I can get fitter, I can’t do anything about the ugliness but I can get fitter.
The Volvo Ocean Race visits Cardiff in June this year and I have a bit of unfinished Family History research in that area so we’re planning a couple of weeks in the campervan to coincide.
I’ve caught up with loads of things that had just fallen by the wayside over the last couple of years. I’ve fished out my local history project, organised it into manageable sections and started writing.
My wife got an allotment last September and I’ve been clearing it of brambles and weeds, digging planting beds and building things on it over the last few months when the weather allows us. It is great exercise, I get out in the fresh air and it is enjoyable because I can. I collected a van full of recycled wood and decking to make a shed and greenhouse out of the other day. It took two trips and I had to load and unload it all, I enjoyed it because I could do it. This time last year I was starting to have difficulty getting upstairs.
So far I’ve had at least a year that I shouldn’t have had if cancer had got its way, I can’t spend the time I’ve got railing about the NHS and worrying about my cancer, I’ll go mad. At least I know I have it, I’m taking steps to mitigate it and I’ll continue fighting it. I might even live long enough for the NHS to drag themselves into the present and start treating cancer patients rather than poisoning them. But in the meantime I’m also making every effort to enjoy myself at every opportunity!