OK, pull up a sandbag, rig up a lamp that swings, get a brew on (or something stronger) and have a smoke – this one is going to be a long one I’m afraid.
Yesterday I went for a second opinion to The Royal Marsden Hospital in Chelsea, mainly to be completely sure of what my options are and to ensure we have explored all the avenues open to us and we are clear about what options we have. We left with pretty much all our questions answered even though I didn’t much like what we were told.
If you think your local hospital is busy, go and have a look in the NHS patients’ waiting room at The Royal Marsden, I’ve never seen anything like it and it really brings home the scale of the cancer problem in this country. We were seen first by a junior doctor and the nurse we’d spoken to on the phone. It quickly became clear that there wasn’t going to be much they could offer but we discussed what I’d been doing and what we had looked into and our questions were answered with a really positive approach. The junior doctor then went to brief the consultant and they all returned and the atmosphere changed somewhat.
Essentially the consultant repeated what the junior doctor had said but not with the same manner, he also made it clear that in his opinion it wasn’t worth throwing a lot of money at treatment that had a limited chance of success, he also stated that “the standard treatment” for my form of cancer is a course of chemotherapy and that is what he proposed. I tried to make the point that the only reason it is the standard treatment is because nobody knows any better as nobody has ever gathered any information on the efficacy of various treatments on metastatic cutaneous squamous cell carcinoma because surviving patients are so thin on the ground, so they prescribe what is available. This wasn’t received well and I decided there wasn’t much point arguing the toss. Immunotherapy is simply not an option until someone produces some evidence that it is better than chemotherapy for my form of cancer and this is just not going to happen, not in my lifetime anyway. He also pointed out that that whatever treatment route I chose, I only have a limited window of opportunity; if I continue to deteriorate I will not be fit enough to stand up to the treatment. I talked about my diet and the nurse said “we advise treatment based on a balanced diet that includes dairy and meat”, I pointed out that I credited my change in diet as being largely responsible for me still being here but it was obvious that they weren’t interested. We’d got what we needed before seeing the consultant so I shut up, thanked them for my time and left.
So I need to make a decision about what to do now. and like many decisions there isn’t an obvious answer.
When I (swing the lamp now) was in the army we used to have decision making exercises, we were given some ridiculous scenario with conflicting aims, insufficient manpower and limited equipment (a bucket and spade, three elastic bands and a swiss army knife for example). Armed with the scenario we had to produce an appraisal of the situation, consider the pros and cons of each option open to us and then decide what to do and come up with a plan to achieve what we decided to do. The game was that there was no right answer, whatever you decided to do would achieve one part of your mission whist failing on another, you didn’t have enough manpower or equipment, you were overloaded with information and weren’t given enough time to come up with a decent plan. You normally presented your appraisal, options, decision and plan to a panel of worthies who would then pick it apart trying to get you to change you mind, admit you were wrong and try and come up with something on the spur of the moment, which was always worse than your original plan. You’d lost if you did this.
The key to decision making exercises was to make a decision and stick to it right or wrong, as when the shit flies even a wrong decision is a million times better than dithering.
I did one of these things on my Foreman of Signals selection course when I was a Sergeant. The scenario was something like you were manning and guarding a coast guard station at the top of a cliff, a ship was sinking in the sea in front of you but you could only save some of the passengers and crew, the nearest lifeboat had gone somewhere else, etc etc, you get the gist. Your choice was to either leave your post to go and save people or stay where you were as you didn’t have enough manpower to do both. Whatever you did you were wrong.
Any Sergeant knows that in this situation in reality what you would do is pick up the phone, pass it on to someone senior to you but gullible enough to take it on, then leave the phone off the hook, light up a smoke, get someone to make you a brew and continue watching Debbie Does Dallas without further interruption.
Unfortunately this solution was not an option when trying to pass a selection process. We had 20 minutes to do the appraisal etc and then had to present it to a panel of a couple of officers and senior ranks, most of whom knew the score and would try and get you to change your mind and let you go if you didn’t. I somehow decided what to do and pretended to have done a decent appraisal and went in to present my plan. I’d miscalculated timings, used more manpower than I had available, over estimated how many people I could save with the equipment etc etc, before even considering the conflicting aims which were impossible to satisfy. One of the panel was a young Second Lieutenant who hadn’t anything better to do that day and he quickly pulled my plan to shreds.
As anyone who has been in the army knows; youth and talent is no match for experience and treachery.
I fixed him with a stare and said “I’m not sure you’ve correctly grasped my plan sir”, smiled and then and proceeded to run through my ludicrous solution one more time. After about 3 repetitions of this he’d got quite agitated and the other members of the panel had to calm him down. One was trying to hide a smile, one wasn’t too happy with me but I think the last one was actually starting to go with my plan. Happily we’d wasted most of the time available so with a couple of trick questions neatly sidestepped I was allowed to leave.
The moral of this story is that when there isn’t an obvious path to follow, make a decision and stick with it. So that’s what I’m going to do.
I have a rare condition for which there is not much information available as to the best course of treatment, therefore a standard treatment plan has been followed in the hope of effecting a cure. This standard plan (surgery, radiotherapy and chemptherapy) unfortunately failed to stem the spread of the cancer. The only treatment available to me on the NHS is further chemotherapy with limited chance of success. The latest form of treatment for cancer is immunotherapy, however it is only approved for use on a limited number of forms of cancer. There is no evidence that it would effect a cure on my form of cancer and it is unlikely that any attempts will be made to gather this evidence due to the rarity of the cancer and the lack of sufficient patients to form a decent sample for a trial. A regime including natural therapies and diet has been followed with arguable success, this regime is not recognised or supported by the NHS. Funds to cover treatment privately are available but limited. I have already outlived my oncologist’s longest prediction so I have no idea what my possible lifespan is, my gut feeling is that unless something unexpected happens I’ll do well to see my 60th birthday in November.
1. Do nothing
This is always an option! I could just let it take its course and try and enjoy myself until death catches up with me. I’ll probably continue to deteriorate and will be dead in a few months.
Achievability: 5 (out of 5, where 5 is high)
Likelihood of cure: 0
Likelihood of extending lifespan: 0
Level of cost involved: 0
Quality of life: Good initially but probably rapidly deteriorating in a short space of time.
The standard treatment and the only one available on the NHS. Everyone agrees that the only thing this will achieve now is that my tumours may shrink but will come back again, the idea being that my possible lifespan may be extended by using this treatment. There is absolutely no evidence that this will have any effect on my form of cancer because nobody has gathered such evidence to date. Treatment is likely to be over 2-3 months and from past experience those months will not be pleasant. It may extend my life by a few months (but it may not) and I need to have the treatment now while my body is strong enough to recover from the hammering it is going to take.
Likelihood of cure: 0.01
Likelihood of extending lifespan: 2.5
Level of cost involved: 0.1
Quality of life: Poor whilst receiving treatment and likely to be poor whilst recovering.
Immunotherapy drugs are at the early stages of their use and so dosage and effects are not well understood, likelihood of a cure is on an individual case by case basis. Immunotherapy will not be available to me on the NHS in the foreseeable future, the only ways to get hold of it are if I get accepted on to a clinical trial or if I pay for it myself. There are no known trials in the UK however there is one scheduled to commence in April in Atlanta, Georgia, U.S.A for pembrolizumab sponsored by the manufacturer Merck. There is a high likelihood of serious side effects with immunotherapy, some are life changing and/or life threatening. The cost of private prescription in the UK is extremely high (of the order of £10k per month for the drug and associated care), it is not certain that treatment for side effects and support would be covered by the NHS. The cost associated with a clinical trial in the UK is low as the drug is provided by the sponsoring company and care and support would be available on the NHS. The cost associated with a clinical trial in the states is high as although the costs of the drug are covered, the ancilliary care and treatment isn’t (the only thing more expensive than engaging a solicitor is the US medical service if you don’t have insurance). If serious side effects are encountered whilst in the states there is a high likelihood of being stranded without being able to afford medical care and also being unable to travel home due to carriers refusing to transport an ill patient. A clinical trial in the US would only be possible if the sponsoring company agreed to cover ancillary medical costs.
Likelihood of cure: 2
Likelihood of extending lifespan: 2.5
Level of cost involved: 5
Quality of life: Poor whilst receiving treatment and likely to be poor whilst recovering, possibly poor for remainder of life whether cured or not.
4. Cannabis Oil
There’s an awful lot of people that claim that Cannabis Oil cures cancer, but like most non mainstream “cures” there’s no scientific evidence for this as nobody is going to bother producing any. You cannot patent cannabis oil and it is cheap to produce so there is no money in it. But there is a growing amount of anecdotal evidence that it works, the chap that made it famous in the U.S. is called Rick Simpson and this web site explains more about cannabis oil. It is possible to make cannabis oil yourself but growing cannabis is illegal in the UK, you also need specific strains of cannabis not just any old weed that people smoke to get high. Cannabis for medical use is now legal in a number of states in the U.S. and Colorado has the most lenient laws. Even in Colorado you need to be a Colorado citizen to obtain medical grade cannabis, although many purveyors will sell you cannabis oil in limited quantities over the counter if you are a tourist. Apparently you need to take it in increasing doses over at least a 3 month period for it to be of any benefit. The maximum tourist visa available is 90 days so in order to achieve a full course you would need to hit the ground running. The costs are not particularly high and a 3 moth stay with cannabis supply would probably cost in the region of £15k. It would mean taking a 3 month break with no knowledge of whether it was going to be successful.
Likelihood of cure: 1.5
Likelihood of extending lifespan: 1.5
Level of cost involved: 3
Quality of life: Reasonably good with limited after effects
5. Continue with current regime
Looking back over this blog the best results I had were at the start when my scans showed the spread of the cancer had slowed and at one point the tumour in my chest lymph node reduced in size. I was really serious about my diet and regime during this period. Unfortunately in the middle of 2015 I ended up in hospital with a throat infection and after that I couldn’t tolerate the dosage of apricot kernels. I don’t know if they were responsible for the good results but I reduced the dose and things have got worse. I do know that I have lived longer than expected and nobody has an explanation for this other than “it was just an estimate”. I think it is due to my generally vegetarian, non-dairy, no red meat, no refined sugar diet. I do fall off this now and again but largely stick to it. I’ve also messed around with my regime, particularly in the last few months, adding things without doing sufficient research and also starting on a study that with hindsight was ill advised. I do have difficulty getting all the pills down every day (well over 30 now) so miss a few now and then. At the moment I feel pretty low but I also think I’m still recovering from the side effects of the study drugs and also from a blast of radiotherapy last week (9th Jan). I’ve also put the regime together with little knowledge or knowledgeable support, perhaps I’ve relied on hope and stubbornness more than I should have. A review of the regime by someone else might be a good idea and also the support of someone knowledgeable and sympathetic to what I’m doing might help as well. I’m not going to get this on the NHS so some cost is involved but not a massive amount in the scheme of things.
Likelihood of cure: 2
Likelihood of extending lifespan: 3
Level of cost involved: 2
Quality of life: Good until I deteriorate as I’m fairly sure I will, I just don’t know when.
It’s fairly obvious from the above that I’m going to stop looking for some miracle cure and continue with my regime. I actually think it still holds a possibility for a cure and is likely to extend my lifespan. I’m going to get my regime reviewed by the Cancer Options people and try and get some regular support from them as it is pretty tough to stick to this regime.
Ages ago I tracked down a holistic dental practice in Huddersfield and meant to get my teeth fixed; my front teeth were smashed and never properly repaired ages ago and they replace all the metal in your mouth to lower toxicity. I’m going to book an appointment and get my teeth sorted out.
I’ll probably continue looking at the trial in the US but its only an option if someone will guarantee my medical bills. I’ll try and do a deal with Merck somehow as I think I’m as important to the trial as it might be to me. But it is only a hope and doesn’t have much chance of coming to fruition. I’ll keep an eye out for trials in this country, but again I don’t hold out much hope of a suitable one appearing.
I might yet try cannabis oil but I’m not sure I want to take 3 months out to find out that it doesn’t work, the jury is still out on that.
Lastly, quality of life is extremely important to me, with hindsight I wouldn’t have had any of the treatment as I gave up a lot of things, it didn’t work and I have never really recovered. I was told that with no treatment I would be dead in 2 years, 6 months later (after the treatment) I was told I had between 3 and 18 months to live. I was fit and pretty healthy whereas after the treatment I was pretty much a wreck and minus my right sideboard. I am still a tad bitter about this, I think people forget what they have said to patients as they see so many but individual patients don’t forget. In truth all the pain and suffering I have endured has been because of treatment, my cancer has so far never given me a problem. I’m not bothered if I never see another doctor again.
Given a choice between suffering for a few months for the possibility of an extra few months (where I might still be suffering) and really enjoying my last few months of this existence, I choose the latter. I might be wrong but I’ve made my decision.