I’ve really enjoyed the last few months, I haven’t seen a doctor, haven’t had needles jabbed into me and haven’t sat for hours in any overcrowded waiting room. Its been fantastic!
I’ve spent most of the time working on the allotment that my wife Helen got at the end of September last year. She applied for it about 18 months previously knowing that there was a long waiting list but was expecting to be a widow by now. (I said expecting not hoping, calm down!). It was a bit of a jungle when we got it but we’ve slowly cleared it, identified what can be saved and what should go, made a plan and done a lot of digging. It has been massively therapeutic for me as it has given me a distraction from the continuous disappointment from the NHS and various powers-that-be and it has also been great for the physical exercise. So I’m more relaxed and also a lot fitter.
Here’s a few pictures of our progress:
Of the 6 options I listed in February I actually went for Option 6 – Do Nothing as none of the other options were really feasible.
- I’m not going back to The Hallwang Clinic unless I win the lottery, so option 1 is out.
- The consultant at Southampton lost interest; After failing to be seen in January he eventually sent me the scan results with no explanation so I had to google the medical terms on the report. We discussed taking out a small lump I have under my chin (which was present in November but didn’t show up on December’s scan) for a biopsy but in the two and a half months to the end of March he and the surgeon in the same hospital couldn’t get their act together to organise it. When I eventually lost patience and told them to get their act together he saw his arse, invited me to find another oncologist and wrote a letter to my GP containing a lot of half truths in an attempt to cover his arse. So I’m not going back to Southampton anytime soon as none of the things we discussed in June last year have actually materialised. That’s option 2 & 3 taken care of.
- There is absolutely no chance of getting funding treatment on the NHS. Following my MP’s intervention I’ve had a letter from a representative of Jeremy Hunt which got everything pretty much wrong including my name and condition and referred me back (incorrectly) to the local NHS CCG who are probably not aware of my existence despite the bullshit about being patient led on their website. My MP followed this up and I got a letter from a minister (Steve Brine) which was full of platitudes and advised me to appeal the IFR decision. Despite being in the Department of Health he clearly has no understanding about the IFR process as there is no process that enables me to appeal the IFR Screening Group’s decision. The IFR Screening Group have still not replied to my first oncologist despite the fact he wrote to them in December (they know they are unaccountable), Simon Stevens (Head of NHS England) still hasn’t bothered to reply to my MP, neither has Phil Mettam (Vale of York CCG), because both of them know nothing will come of it and they will still get their 6 figure salaries and fat pensions whether I die or not. So that’s option 4 gone.
- The clinical trial that my consultant in Southampton recommended to me is not an option either. When I looked at the exclusion criteria I am not eligible as it is only open to people who have not previously had a vaccine. I also don’t like clinical trials as the health of the patient is a long way down the trial’s priorities, people have died when trials finish because the drugs were helping them but after the trial finishes they can’t get them anymore. Also the detail of this trial showed that the first part was an attempt to work out a safe dosage, so what they do is keep increasing the dose until you are ill then they can get a feel for what is safe; NO THANKS! So option 5 is out as well.
So option 6 (do nothing) was the only one left.
Now regular readers of this blog (both of you) will know that doing nothing isn’t in my nature, so I figured that it was up to me to keep myself alive. My logic was that the scan in December showed that there were still small tumours here and there but they were pretty inactive, so I was in a good position to try a few things to maybe get rid of the last few bits. I’m probably in a better position than I was in early 2015 when the cancer was aggressively active and my body and immune system were trashed from surgery, 7 weeks radiotherapy and a couple of hefty shots of platinum based chemotherapy.
I feel fit and well and my only real problem is that the immunotherapy treatment in Southampton has trashed my digestive system. The NHS tell you about potential side effects but do absolutely nothing to mitigate them or deal with them. So I did a review of what I had been doing and what I thought I should do and what other things I could do.
First, I visited my GP and asked for a referral to an oncologist who deals with skin cancer. I have skin cancer and have never been seen by a skin cancer expert. I also asked for a referral for my mental health; on a number of occasions I’ve considered purchasing a baseball bat and travelling the country dealing with all the people who can’t be bothered to intervene or respond to requests to intervene in my case. A couple of these are local and I’ve genuinely considered going and “having a word” as they say. This will come as no surprise to some people but its one thing to say it and another to do it. I know it won’t help in the long term but I may get some short term satisfaction. Joking aside, it’s a worry that I genuinely have come pretty close to doing this.
I then looked at all the medication and supplements I’d gathered over the last few years and decided what I should take:
- AHCC – this is aimed at boosting the natural killer cells in your immune system. I like to think that it was this sort of thing that helped my body be in the position that when I had the treatment at the Hallwang my immune system was raring to go, it just needed to be able to see my cancer. Took what I had and ordered more.
- Beta Glucans – again, this boosts your immune system, I had some left so they are on the list. Not sure if I’ll continue with them though.
- Cumin – has a really good reputation for fighting cancer, I have a big tub of tablets, might as well take them
- Celebrex – this is an anti inflammatory for arthritis but the doctor in Germany said it would fight my cancer. When I had a google of Celebrex and cancer, it evidently has a coincidental side effect of attacking tumours that express Survivin (which inhibits the natural death of cells – sneaky cancer!) which mine do. So I started taking what I had left although I only had a couple of weeks supply. It is a prescription drug in the UK and there is no way any doctor in the UK was going to prescribe this for me, so I contacted the Hallwang and got another 3 months supply.
- Cannabidol – this is a legal product that contains Cannabis CBD in gel tabs, it doesn’t get you high as it doesn’t contain THC. I took it prior to going to the Hallwang and it really helped me sleep. Had some left etc etc
- Probiotics – I need something to try and get my digestive system back on track so I have a couple of these a day with a meal. They are working slowly.
I then had a look at what I could take that would possibly fight the cancer.
I considered going back onto Apricot kernels, but I’ve never been convinced of their efficacy, one of the tumours in my chest did get smaller whilst I was taking them but I was doing other things as well. Also, in December 2016 I’m fairly sure they started to make me feel ill as the symptoms I had were similar to mild cyanide poisoning (if that can ever be described as mild!) possibly due to the cumulative effect of taking them. They do have pretty good anecdotal evidence of success with some people so I wouldn’t rule them out, but I still have my doubts.
I also have some Laetrile left, it was pretty expensive so the Yorkshireman in me is screaming to not waste them. But again, I don’t know how effective it is and I also have no idea what is in the tablets I bought, they were from a recommended source but they are just white tablets and the source has no authority and isn’t recognised. Not convinced.
The thing that has the best anecdotal evidence of success with cancer is cannabis oil. I’ve looked at this a couple of times but have shied away as it is illegal to possess or make. But the establishment that makes these rules is the same establishment that refuses me treatment that I have demonstrated will save my life so why should I stick to their rules? My life is at stake here, if it works and saves my life, who cares about rules?
Also, the current government is completely hypocritical about medicinal cannabis; the official stance of the Home Office is that cannabis has no medicinal benefits and thus refuses to allow it to be prescribed. Home Office advice states “It is unlawful to possess, supply, produce, import or export this drug except under a Home Office licence. It is also an offence to cultivate any plant of the genus Cannabis except under a Home Office licence.” They have granted a licence to grow to G.W. Pharmaceuticals who are researching producing cannabis based products. What they are doing is trying to synthesise products from Cannabis so they can be patented and branded and everyone will make loads of money, in a similar way to how pharmaceutical companies make huge amounts money from cancer at the moment. It wouldn’t do for a natural product to be found to work as nobody could make any money from that.
The hypocrisy comes from the Drugs Minister Victoria Atkins continuing to insist there is no medical benefit from cannabis when her husband Paul Kenward is the UK’s biggest grower of cannabis for medicinal use. Apparently, Theresa May’s husband’s company’s fund is also one of the biggest investors in GW Pharmaceuticals, the share price has gone from less than $10 in 2013 to $161.10 on 25 May 2018. Noses in the trough, what a surprise.
So I did some investigations.
The most high profile person in respect of medicinal cannabis in the UK is Jeff Ditchfield of Budbuddies. Starting with those links it is pretty easy to find out what to take and with a bit of digging where to get it. Bud Buddies is so overwhelmed with people asking for medicinal cannabis that they restrict their supply to ill children and have a few very high profile success stories, not just for cancer. They advocate that the best way to get good quality cannabis oil is to grow and make your own and have produced a book telling you how to do this.
Cannabis contains a number of cannabinoids, the two best known are CBD and THC, the THC cannabinoid is the one that gets you high but it is also the one that apparently attacks cancer cells. A product containing anything more than 0.2% THC is illegal, CBD products containing less than 0.2% THC are legal and readily available, even Holland and Barratt have recently started selling one (when they introduced it, it sold out in one day). Ideally what I need is a product with high THC and high CBD content, preferably in a 1:1 ratio.
Unfortunately, growing a few cannabis plants for your own consumption (in any way and for any purpose) carries a maximum sentence of 14 years in prison, so its a bit of a leap for me to go down this route. I’m definitely not growing it in my house or on my allotment! Obtaining Cannabis and making my own oil requires me to buy it in relatively large quantities and sources within the UK are, how shall we say, somewhat unreliable. Also the quality of Cannabis sold on the streets is generally poor and not of the right strain. Cannabis smokers want to get high, so the THC level in Cannabis grown for smoking has a very high THC level, I need a 1:1 ratio of THC and CBD as both cannabinoids do you some good and the CBD apparently offsets the high of the THC. So getting hold of suitable Cannabis Oil is something that is pretty difficult for any law abiding citizen like me, which is why I’ve never really sought it out before. Maybe I should have.
Luckily, while I was at The Hallwang Clinic a relative of another patient gave me a reliable contact for good quality medicinal cannabis oil (please don’t ask). The relative was a doctor and an integrated health specialist so I trust this contact. I’ve been taking it since early March and I feel brilliant.
I don’t quite know the ratio of THC to CBD but was told it is high THC so I also take CBD Brothers Purple CBD paste at the same time to offset the high. I take them late evening and sleep really well! Only time will tell if it is doing me any good. Like most things it took a month to build up the dose, but now I’m quite happy with things.
Once you start actively digging, there are a massive amount of online resources for Cannabis Oil (legal & illegal); forums, facebook groups, websites etc. People are taking forms of cannabis for many conditions; cancer, epilepsy and fibromalgia seem to be the main ones. It seems to be quite an incredible plant and the demand for legalisation of medical cannabis in the UK grows. Medicinal cannabis is legal in many states in the US, Spain has a tolerant approach to people growing small quantities for medicinal use and Canada seems to be taking an extremely sensible path towards legalising medicinal cannabis using strict regulation. Here in the UK we lag behind many developed countries, as we seem to do with everything these days. If Medicinal cannabis is ever legalised in the UK it will be some time years from now and too late for many people who do not wish to be criminalised for trying to save their own lives when the medical profession has abandoned or failed them.
As a footnote: the other week I visited St James Hospital in Leeds to see my new oncologist. I actually thought somebody had hit me with a baseball bat as what happened seemed like I was dreaming. The waiting room was almost empty, I was seen on time, she didn’t ridicule what the Hallwang had done or anything I had done, she said that given my condition I shouldn’t really be still alive, she agreed I should be monitored and said she would arrange a PET CT scan. Two days later the scan appointment arrived! What is going on?
I don’t expect to get any useful treatment, I just really want to know where I stand and have some continuing monitoring. If I’m getting better I want to know, if I’m going downhill I want to know, I don’t think that’s a lot to ask of a system that I’ve paid into for 44 years. I’m on some waiting list for the mental health referral so hopefully the baseball bat itch will not come to fruition in the meantime.
Thanks for reading, onwards and ever upwards!