Quite often over the last couple of years it has been difficult to keep slogging away trying to beat this obnoxious disease, it would be much easier to pack it in and let nature take its unnatural course. So I thought I’d have a bit of a ramble on about a few things that have inspired me to keep trying to beat this cancer and drive me on not to pack it in.
A really inspirational thing is seeing someone overcoming everything that life has thrown at them and still remain cheerful, still push on. When I need an example of someone like this I look to Ben Parkinson MBE. If you have been living as a hermit for the last 10 years and don’t know who he is I’ll give you a bit of background.
Ben Parkinson was a Lance Bombardier in 7 RHA (the Royal Artillery’s paratroop unit) when, in 2006, he was the rear gunner in a WIMIK Land Rover when the rear axle detonated a huge anti-tank mine, Ben took the full force of the blast. He was flown back to the UK with little chance of survival, he had broken every single rib, his spleen was ruptured and with his legs so badly damaged surgeons had no option but to remove both above the knee. His body was shattered and no one knew what damage had been done to his brain, but as he lay in a coma for more than three months the prognosis was poor. Aged only 22 he’d gone from being a 6 ft 4in, super fit paratrooper to a brain damaged paraplegic given little chance of survival.
A lesser man would have died, but Ben is stronger than your average person; he defied the doctors by waking up from his coma and beginning to communicate. His family were told he’d never walk or be able to speak again, but the doctors underestimated Ben; he can do both. In 2012 He walked through Doncaster on prosthetic limbs carrying the Olympic Torch, in 2015 he kayaked down the Yukon River with colleagues from the Pilgrim Bandits Charity, formed by a group of Special Forces veterans; their mantra is ‘Always a Little Further’.
When asked about his motivation, Ben simply replies: “If someone says to you – you’ll never walk or talk, would you just be like ‘I’ll take it’ or would you fight to prove they are not right – to walk and talk again. So onwards and upwards for me.”
I follow Ben’s facebook page and his humour shines through in his posts. His attitude of just getting on with it and remaining cheerful, despite everything that has happened to him, is truly inspirational. To fight back from those injuries, defying what people told him, is also truly inspirational. If he can do all that, I’m certainly not going to pack in while I still have a fighting chance. Thank you Ben Parkinson for giving me inspiration, help and support even though I have never met you.
Another thing that has inspired me is a scene from The Deer Hunter. Now the character that should be inspiring is Robert De Niro’s “Mike Vronsky”; he’s organised, level headed and single minded; he takes serious things seriously but also likes a laugh. But the guy that inspires me is the marine at the bar in the wedding scene. Have a look and I’ll try and explain.
The marine casually walks in to the bar and pretty much ignores what is going on, Mike notices him but doesn’t say anything, it’s Steve that draws attention to the marine so they buy him a drink. The marine doesn’t pay any attention to them at all until they toast him “Na zdorovije!” then he looks their way. The look that the marine gives them is one that tells any observer that he’s been there, done it and got a whole cupboard full of T-shirts to prove it, and he doesn’t really want bothering, he looks back to his drink. They approach him and tell him they are “going airborne” and “send us where the bullets are flying”, etc. Being forced to engage the marine lets a small smile cross his face and toasts back “Fuck it!” which surprises and annoys them, they try again: “what’s it like over there?”, again the marine just responds “Fuck it!”. It’s all a bit tense for a moment then the guys laugh it off, buy the marine another drink and toast him “Fuck it!”, the look and half smile that passes across the marine’s face tells everyone watching what he’s thinking: “you can’t even imagine what you’re going to, good luck”.
Actually the good luck bit is probably sarcastic. But the reason the marine is inspirational to me is that he is completely in control of the situation, he doesn’t feel threatened by three drunken steel workers, he’s immensely confident of his own capabilities. The look he gives Christopher Walken’s character when he walks round to the other side of him is enough to send him back to his friends. He’s alert and ready throughout the whole scene but completely in control and gives of an aura of superiority that his uniform emphasises. There’s no way he’s even going to start to explain about Vietnam because he’s been through something they won’t begin to understand until they have been through it.
And I have to say I feel like that sometimes dealing with cancer. Cancer is very common these days and so pretty much everyone of a certain age has been touched by it in some way, yet to be terminally ill, getting slowly more affected and knowing that at some point its probably going to catch up with you and kill you, is something that only those that have experienced it can understand. I’m always pleased to discuss with people my current treatment and how I’m feeling and I know I’m probably boring people, but I tend not to discuss the dark places it sometimes takes you.
I wish I was as confident and in control as that marine. Fuck it!
The final thing that drives me on is my lifelong hatred of people who treat you like an idiot, who patronise you and think they know better without finding out first. There are at least two people on my cancer journey who fit this bill to a “T” and I want to prove them wrong.
The first is the arrogant consultant from The Royal Marsden who spared me 15 minutes of his valuable time to talk down to me as if I knew nothing of my condition and nothing about immunotherapy. One thing any fighting cancer patient does is become an expert in their condition and researches possible treatments for it.
He’s a big cheese in what used to be called “The Melanoma Department” at The Royal Marsden who decided to grandly rename their department “The Immunotherapy and Skin Cancer Deprtment” when immunotherapy drugs were authorised for use on Melanoma in late 2016. When you go to a department like this you think you are meeting experts who can discuss drugs and their likelihood of being useful to you. This guy seemed to make it up as he went along, didn’t appear to know as much as us and talked to me like I was a 6 year old for 15 minutes not allowing me to get a word in edgeways.
His recommendation was that immunotherapy (broad brush not specific) would be unlikely to be successful (less than 20% chance he said) and the standard care for my condition was “platinum based chemotherapy” (no % chance given, not surprisingly) and that was what he recommended. I’m hoping that both of us realised that this was bullshit, I certainly did, what he meant was that it wasn’t available to be used on me by the NHS. I wish he had just said that as we could have saved some time. I’m fairly confident that I’m going to recover fully and get a few years more on this earth and when the NHS confirm this, he’s getting a letter.
The second is someone who I know vaguely as he sails at the same club as me. I was dropping off my boat on Sunday at the club and went for a coffee in the club house, the racers were in between races so I had a natter with a few. He chose his moment to pop over and ask me how I was and given I hadn’t seen him since sometime last season I said I was really well but had had my ups and downs. He said he’d looked at my blog and then proceeded to tell me that he had concerns about the clinic I was going to, the Doctor who was treating me and my treatment. He essentially said that the clinic doctors and owners were charlatans who were “getting rich by giving false hope to cancer patients”. Perhaps I should point out this chap is an NHS GP.
I’ll put aside the crass insensitivity of a doctor approaching someone they know is terminally ill and spending 5 minutes lecturing them on how stupid they are, trashing the treatment that they are spending a six figure sum on, and trashing the clinic they are attending. However, its not really possible to ignore the sheer arrogance of thinking that we hadn’t researched the clinic by contacting current and previous patients, that we hadn’t done some research on the doctor who is treating us and that we hadn’t researched the treatment we were getting and were fully aware of the risks. To assume that we were just slinging our not considerable savings away without doing any of that beggars belief. I pointed out that it was only 7 weeks since my first visit and in that time I had gone from deaths door to all my visible and obvious tumours disappearing, he responded by saying “I’m glad you think it is working for you”.
“I’m glad you think it is working for you” !!!!
The sheer arrogance of that sentence is shocking. It must be doctor speak for “I don’t care how well you are or how many tumours have disappeared from your body, I have spoken and anyway it can’t be working because we don’t do what they are doing in the NHS”.
I tried to explain that I was getting a combination of immunotherapy drugs and antigen vaccinations, these drugs are expensive and that made up the bulk of our expense. I told him that they had tested my tissue samples to determine what treatment would be most likely to work on my cancer before treating me. I admitted that I didn’t know which element of the combination was making my immune system attack my tumours and make them disappear to which he replied “that’s the problem!”. What problem? My cancer is going, I am being cured. Where’s the problem? I think he was inferring that the treatment plan was basically throw anything at the problem and if your lucky something might work.
When I got home I thought about what he’d said and realised his only sources of information were my blog (which he’d clearly only skimmed) and googling the Hallwang clinic. So I thought I’d put his claims to the test. His claims were:
- The clinic was providing false hope for cancer patients
- The clinic owners and doctors were just getting rich on the back of cancer sufferers’ desperation
- The doctor treating us was suspect because “he doesn’t run clinical trials or publish papers about his work
- The treatment was random in the hope that something would work
Some of what he claimed about reminded me of something I’d seen when I initially googled the Hallwang Clinic, it was a particularly sneering article in The Spectator written by one Edzard Ernst. In the article he skims over immunotherapy, clearly not knowing what it is but saying it is not alternative medicine, then continues trashing alternative medicine. Very few people go to the Hallwang Clinic for alternative medicine, everyone I met has gone there for immunotherapy or similar drugs as they are only available to a very limited number of patients in the UK. Alternative therapies are available if you want them and some people say they benefit from them but that is not the clinic’s prime focus.
The Spectator article is quoted on scienceblogs.com in an article that again focuses entirely on alternative therapy and accuses the Hallwang of quackery. It doesn’t take long to find out how poorly researched this article is, in it the author says:
I was able to find a name, Dr. Jens Nolting, mentioned by patients on discussion boards, but I was able to find little or nothing else out about him.
Mmm, try using google.de rather than google.co.uk! Jens is part of the Haematology and Oncology team at Bonn University Hospital and has 51 articles where he is the author on pubmed.com, many are immunotherapy associated articles.
Now, a bit of caution required, there is more than one Dr Jens Nolting! So clicking on the first of the 51 Jens Nolting articles leads us to the full text where happily there is a picture of the correct Dr Jens Nolting next to the aricle.
So I think we’ve successfully refuted the claims that the doctor treating me is suspect; he is an acknowedged expert in immunotherapy.
What about the false hope claims? Well lets start with Pauline Gahan who is mentioned in the article on scienceblogs.com. I met the Gahans on my last visit and they had nothing but positive comments about the Hallwang. The treatment Pauline had gave her an additional year of life with a quality of life she would never have experienced otherwise. Although all the other tumours disappeared, unfortunately the tumours in her liver never responded fully to treatment and she died last week. How much is an extra year of life with a good quality of life worth?
Another example is Claire Cunningham who I met in March, she’d been given 24 hours to live in September 2016 after battling cancer since 2008, read Claire Cunningham’s story here or use google. Claire said to me in March, “yes its expensive but I’m still here and I’m improving, I’d be dead otherwise”.
Quickly a couple of other people’s stories: Haley Kalinins and Lisa Harris, I’ve met both of these ladies and both have improved enormously following treatment at The Hallwang clinic after being told there was no hope for them. Neither think they are being ripped off or being given false hope.
Finally a thread on a breast cancer forum which speaks for itself, I haven’t met any of these people.
There are some common themes that run through these stories; all were at the same point as me when they decided to go to The Hallwang Clinic – no other options; all have benefited from the treatment; nobody is under any illusions – they want to live a bit longer, a cure would be a bonus; finally the extremely high cost of treatment. The Hallwang Clinic doesn’t give false hope it gives hope.
So lets look at the cost and the claims that the clinic are getting rich by duping desperate cancer patients. Costs for patients are confidential so I’m not going to be too specific but I have already said that my first visit cost around £60,000 and each subsequent visit costs me around £25,000. How is this broken down:
- Tax – The first element of these costs that doesn’t go to the clinic is the 19% tax (VAT equivalent) that is payable on everything, so this around £5,000.
- Travel & subsistence – We take the train from York to Manchester, Fly to Stuttgart, taxi to the local town, overnight in a hotel, taxi to the clinic. We return by bus, train, flight and train. With meals this all costs around £500.
- The drugs – I’m receiving Pembrolizumab (trade name Keytruda), Ipilimumab (Yervoy) and a vaccine with adjuvent that is made up specially for me to combat the antigens present on my tumours. These cost me around £17,500. It is really difficult to find a reliable market price for these drugs as the drug companies tend to charge what the market will bear and agree discounts with organisations so I can only make a best guess at what they actually cost. Here are the NICE approval documents for Pembrolizumab (2015) and Ipilimumab (2013), bear in mind that the NHS gets a discount and prices may have changed since these documents were written. I can’t find a comparable cost for the vaccine but I don’t think I’m being robbed. The clinic is a business so they will have a margin on the drugs but it doesn’t seem like a huge one.
- So that leaves around £2000 for two nights stay at the clinic, full board, for two, 24/7 nursing cover, all the consumables (bandages, canulas, labour, etc etc), blood tests and infusions. Have a google for the cost of a stay in a UK private hospital and you’ll see that this isn’t excessive.
The clinic is a business but to claim that the owners/doctors are getting rich from it is taking things a bit too far. Taking into account all the staff (Doctors, nurses, chefs, waitresses, administration) they have there compared with the usually handful of patients present, we wondered if they were making sufficient money.
So, the Doctor is not a charlatan; its not false hope they are peddling it is extra time on this planet, usually with a good quality of life and they don’t seem to be fleecing me on the costs. What about the treatment?
My main treatment is:
- Pembrolizumab – an anti-PD-1 monoclonal antibody drug, PD-1 normally maintains the balance of the immune system by shutting it down at the right time. Some cancers take advantage of this shut-down mechanism by activating PD-1, enabling them to escape attack by the body’s white blood cells. It is approved for use in the UK for Melanoma, non-small cell lung cancer and Head & Neck Squamous Cell Carcinoma (which is very similar to my cancer, I have Metastasised Cutaneous Squamous Cell Carcinoma). Pembrolizumab prevents PD-1 from activating allowing the immune system to attack the cancer. A google search doesn’t take long to find papers showing positive effects of Pembrolizumab and other anti-PD-1 monoclonal antibody drugs on my form of cancer. This is why I went to the Hallwang, to get this drug.
- Ipilimumab – is a monoclonal antibody that works to activate the immune system by targeting CTLA-4, a protein receptor that downregulates the immune system. It is approved for use in the UK for a number of cancers. Evidence of use on my form of cancer.
- THX-Vaccination-Strategy – my tissue samples were tested and certain tumour associated antigens identified on the surface of the cancer cells. As I understand it, the vaccine essentially trains my immune system to recognise these antigens as not a very good thing and therefore attacks the tumours. As the control system for my immune system has been switched off by the Pembrolizumab and Ipilimumab, it needs to know what to attack and what not to attack, a rare side effect of immunotherapy is the immune system attacking vital organs rather than tumours!
So all of these treatments are relevant to my form of cancer and specific to my tumour associated antigens, it doesn’t really look haphazard does it?
What about the use of them all together? Have a read of this article discussing combinatorial and personalised approaches to Immunotherapy. What I’m getting is personalised, leading edge, cancer specific treatment that people in the UK can only dream of.
So after all that rambling I think I have successfully shown that GP’s rant about the clinic and treatment are un-researched rubbish and completely unjustified.
I and many other patients like me have no illusions about what our money might get us; a few more months or years of life with a quality of life that we would otherwise not have had. I managed to stay alive just long enough to get to the Hallwang Clinic in March 2017 after being told there was nothing more that could be done for me in April 2015. After 7 weeks I almost have my life back, and after another couple more treatments I may get a few more years of life. How much is that worth?
Hopefully I’ll live long enough to see immunotherapy become the standard treatment for cancer and be available to me on the NHS.
It just illustrates the difference between knowledge and wisdom: knowledge is knowing that a tomato is a fruit, wisdom is not putting it in fruit salad.
Well done if you read this far.