Save Paul From Cancer
My name is Paul Thomas-Peter, I'm 59 and I was born and bred in York.
If my oncologist had been correct in 2015 I wouldn't be sitting on this seat today with that wonderful display of daffodils behind me.
I need your help to try and ensure this isn't the last time I see the daffodils on York Bar Walls.
In late 2013 I was diagnosed with a minor skin cancer (squamous cell carcinoma of the skin) on my right temple. In January 2014 it was removed and I was told not to worry as it very rarely spreads.
By April 2014 it had started spreading through my lymph system and in August I went through 7 hours of surgery to remove the lymph nodes from the right side of my neck. From September to November 2014 I went through daily radiotherapy together with 2 hefty doses of chemotherapy.
Unfortunately, in April 2015 I was told that my cancer had spread to the lymph nodes in my chest, it was terminal, the only treatment available was palliative chemotherapy to ease my symptoms and I had between 3 and 18 months left to live.
I have never accepted that there was nothing that could be done (because I'm a stubborn Yorkshireman) so I have researched my condition, tried many alternative and complementary therapies and have continued to look for something that might help. The details are in my blog Trying To Beat Cancer
Although some of the things I tried definitely slowed the progress of my cancer, nothing got rid of it.
In the latter half of 2016 we began to hear about a new treatment called immunotherapy and read of the amazing successes being achieved, particularly on people with my or similar forms of cancer.
This treatment is slowly becoming available in the UK, but only to patients with specific forms of cancer where clinical trials have shown some success. This doesn't include my form of cancer and by the time it does become available it will be too late for me. I need this treatment now.
In January 2017 we heard about the Hallwang clinic in Germany and contacted them immediately. My diagnosis and previous scan results were sent to them and they were enthusiatic that they could help me but needed to test my tissue samples first. My tissue samples were sent to them and tested and they were more enthusiastic that they could help, even mentioning the words "full remission".
They put together a treatment plan for me which included 3 immunotherapy treatments, so my wife and I flew across and spent a week there getting the treatment that I just cannot get in the UK. I have to return every 3 weeks for 3 months (but only for a couple of days at a time) in order to complete the minimum course of treatment.
Treatment at the Hallwang Clinic is not cheap, mainly due to the cost of the drugs involved. That first visit cost us around £60,000 and each successive visit will cost us around £25,000.
To pay for this I have used my Army pension lump sum, I am emptying my other personal pension funds, I am turning any other savings into cash and I'm selling my beloved Northern Soul record collection.
But I don't know if this will be enough to complete the course of treatment. So I've decided to try and raise some additional funds using this platform. It goes against the grain a bit to ask people for money as I've always been fiercely independent, but this treatment may well save my life.
All the funds raised will go towards my treatment at The Hallwang Clinic. Please help if you can.
My wife Helen and I have been married for 37 years now and we've always done everything together. She was with me through most of my 16 years Army service moving round the world, then we spent some time in London (doing careers!) before moving back to Yorkshire and eventually York. We do everything together and were looking forward to enjoying our retirement after over 40 years of work. Instead Helen has ended up as my carer.
We'd like to think that if we get through this we can still enjoy our retirement and I can be active again. We've regularly enjoyed hillwalking, sailing, skiing and touring in our camper van. We go to Cyprus every year for a late summer holiday in September and this year's is booked, I hope I get to go with her.
I can't put into words how grateful we will both be for any donations as it is difficult to express how much the possibility of surviving this means to us both.
If you can, please help us.
It is now just over a year since I started this fundraiser, I said I'd like to see the daffodils on the bar walls in York again and here I am, still here, and the daffodils are out.
Thank you to everyone who has helped me get here.
I haven't posted an update for a couple of months, mainly because nothing much has happened.
The NHS has gone back into its usual mode of failing to get anything done. What started as a really encouraging opportunity at Southampton has deteriorated into normal NHS service.
I wasted 2 days in January going to Southampton to get the results of the scan I had just before Christmas. After waiting two and a half hours to be seen it became clear that I would miss my train if I waited any longer so I left.
My scan result were emailed to me in late January, I don't fully understand them but apparrently nothing has changed much since July.
This means the treatment I had at Southampton hadn't worked so it seems that the vaccine (which my Southampton consultant had said was a waste of time) was actually pretty important. We missed it out and the combination of drugs hasn't seemed to have done anything useful other than completely mess up my digestive system.
The plan going forward was for a biopsy to be arranged to take a tissue sample from a small lump under my chin, this would allow some testing to find out what is happening and would also be useful for genome sequencing and for a possible trial.
Unfortunately, in the 2 months since this was discussed, nothing has been organised and it now seems the promised genome sequencing etc has been sidelined. The usual guff about funding for my treatment was put forward, whereas I just think it is lack of interest and/or high workload pushing my case into the background.
The good news is that I am not getting any worse, I feel really well and am getting stronger by the day. I put on quite a bit of weight over the last few months, I think as a result of my digestive system problems, this is now starting to go. Working on the allotment is giving me plenty of exercise making me stronger and fitter. There has been tons of digging to do and I am also constructing a shed/greenhouse out of largely recycled materials.
I have also been contacted by the Pamela Northcott Fund ( http://www.pamelanorthcottfund.org.uk/) who help cancer patients who have been denied treatment. I'm quite optimistic about this, so we'll see what happens.
Nothing much came out of my MP writing to Jeremy Hunt, Simon Stevens (Chief Exec NHS England) and Phil Mettam (Accountable Officer Vale Of York CCG who are apparently responsible for commissioning my treatment). The reply from JH's office made no sense, got my name wrong and also got my predicament wrong, referring the issue back to the local NHS. Simon Stevens and Phill Mettam didn't even bother to reply. Another letter has been written to Steve Brine MP (Parliamentary Under Secretary of State for Public Health and Primary Care) who responded to the Cancer Strategy debate in the House of Commons. No idea if anything has come of it, not holding my breath.
I've also started taking errrr ..... something I shouldn't. It seems to be doing me the world of good so I'm just sorting out the dose. I got the contact last year but didn't bother with it as I thought I was on the mend. Its very hard to get a reliable contact, most people advise you to grow it and refine it yourself, which I don't really fancy. We'll see how that goes.
I also had some Celebrex left from my visit to The Hallwang Clinic. Waste not, want not - so I decided to take what I had left which was roughly a months supply. Celebrex is an anti-inflammatory arthritis drug, however it has a spin off effect of killing cancer cells in some cases ( https://www.webmd.com/arthritis/news/20041130/celebrex-makes-cancer-cells-self-destruct).
A couple of weeks after starting to take Celebrex again I noticed that the small lump under my chin had reduced in size. It is still reducing! I can't get Celebrex in this country as it cannot be prescribed for cancer so I've ordered some more from The Hallwang Clinic.
So going forward, I shall endeavour to do as much as possible while I feel so well. I shall continue self-medicating and I doubt I will be returning to Southampton (which I won't miss).
I'm in the process of sorting out a more local NHS oncologist, preferably a skin cancer expert as I've never been seen by one. I doubt any useful treatment will be forthcoming but I might be able to get scans etc.
So I'm still here, still fighting, still positive and still enjoying beer. What's not to like?
Unfortunately, the NHS practice of booking 4 people for appointments at exactly the same time meant I traveled to Southampton on Wednesday (5 hours), stayed overnight, went for my 11am appointment the next morning, but despite telling them I had a train to catch at 13:30 I still hadn't been seen at 12:20. So I went for my train and traveled back to York (5 hours).
What a waste of time! I still have no idea how I am as my consultant hasn't got back to me.
So here's an update of what has gone on since my last update.
I've had a number of events that earlier this year I didn't think I'd be around to experience; my 60th birthday spent DJing in Margate followed by a trip to Venice with my wife; Christmas with relatives, and seeing the dawn of another year.
Hopefully the cliche "New Year, New Me!" will actually be true.
I also appeared on television again, on Look North (Tyne Tees), the video should be on this update. Damian O'Neil, the BBC reporter put a lot of time and effort into this short piece and absolutely nailed the important elements of my incredible recovery. So thank you Damian.
It's a shame it didn't get picked up nationally, or shown on Look North (Leeds) where it would have been seen by people who know me and was probably more relevant, but at least the message got out.
My funding request was turned down, which was annoying but not unexpected. The reasons for turning it down were farcical though so I haven't just accepted it, I've demanded an explanation and I've also written to my MP (Rachel Maskell) about it and the whole saga of my treatment. She is extremely sympathetic to my situation and has written to the relevant organisations for an explanation. It will be interesting to see what comes from this.
The details of my funding refusal have been covered in my last blog post here: http://tryingtobeatcancer.org.uk/individual-funding-request-farce-nhs-says-no/
One of the organisations my MP wrote to is the Vale of York Clinical Commissioning Group (CCG) who are apparently responsible for commissioning my treatment.
Despite all the guff on their web site about "putting the patient at the centre of treatment" I'd never heard of them. After having a look at their web site and the York Hospital web site, I realised that despite ranting about "the NHS" on a regular basis, I don't really understand how "the NHS" is structured. So I'm currently putting a blog post together about this and also looking at where the money goes in the NHS.
This will probably bore everybody who reads my blog but I do like a bit of detail and I don't want to just whinge about something I don't understand.
I must be getting better, I'm angry and curious again!
Looking forward; I'm going to start doing some work again. I've had a couple of small bits of Family History research work from my web site http://www.eborfamilyhistory.co.uk so I'll freshen that up a bit and start touting for work again. I might also brush up my Wordpress developer skills and try and pick up some work again in that field. I had just built up the beginnings of a small business in Wordpress development when I had to pack it all in before my surgery in 2014. I might even get a part time job but I'm not a very good employee.
Another thing that I can get stuck into is the allotment that my wife took on last September. I've already fabricated a 3 bin compost system from scrounged pallets and double dug the first of 3 large planting beds. I have a shed and greenhouse to build as well as 2 more planting beds to double dig. Working on the allotment is remarkably relaxing and clears the head of worries, we might even grow something!
Thanks again to everyone that has helped in the past, I have a couple of fairly large donations coming up; the money raised from Soulgate on Sea 7 in Margate and the proceeds from the Ripon Sailing Club naked calendar. But every little helps.
Yet here I am; 60 years old today!
I can't tell you all how grateful I am for your support, the money raised here has helped enormously to get me to this stage.
The two people I will always be most grateful to are (in order) firstly; my lovely wife for supporting me, looking after me and putting up with me through the ups and downs of the last few years, I am not a good patient.
And secondly; Dr Jens Nolting of the Hallwang clinic for treating me with the treatment I needed at what was almost the last few moments of my life. It might have costs a lot of money, but nobody else would treat me.
To say I'm elated to still be here writing this is an understatement. Every day is something to cherish. Better than that, I am still getting better but I won't know where I stand until the new year.
In a couple of weeks I head off back to Southampton for hopefully my last treatment but today I am darn sarf To DJ at Soulgate on Sea #7 where all the money raised this year are going towards my treatment costs.
Thank you all again for your support, I wouldn't be here without you.
Thank you for continuing to support me, I'm humbled and extremely grateful.
I've recently had my first treatment in Southampton and what a hectic day!
Appointment with the consultant to discuss scan results, decision on treatment, possibility of involvement in research project. He was disappointed that I don't have any accessible tumour that he can get a biopsy from, but I have to say that I am not :-)
Next up a CT scan so I couldn't eat all morning.
Then a quick lunch and off to the chemo ward for my immunotherapy drugs.
Arrived there at 9am, finally got out at 7pm!
A week or so later and thankfully no serious side effects. I've started taking some of my immune system boosting supplements again and also the stomach protection and liver flushes that I was getting at the Hallwang clinic, so hopefully these drugs are now killing off what little remains of my cancerous tumours.
I have another 3 treatments in Southampton to come then a PET scan to see the results (probably in January). Hopefully I will be clear of cancer (or No Evidence of Disease to give it its official term).
The application for funding was approved at the local level in Leeds and is now with NHS England, so fingers crossed they actually fund this treatment and save me about £25,000.
That isn't a lot to the NHS but having spent £170,000 already, I could really do with it.
This weekend sees the launch of the Ripon Sailing Club "Streaker Boys" calender which features myself and 8 other fellow sailors in little more that a life jacket and flip-flops. The professional photographer Nikki Mitchell ( http://www.nikkimitchellphotography.com/home), who gave her services for free, has produced some brilliant photos and these have been put together into an excellent calendar.
Ideal for Christmas gifts for those people who don't mind seeing my naked backside for around 8 months of the year.
You can purchase it here: https://www.ripon-sc.org.uk/product/streaker-boys-calendar-1 and all profits go towards my treatment costs.
Thanks to all involved in producing it.
Happy birthday Paul Make sure you have a few swift ones as you deserve it I’ll definitely be having one to toast you All the best buddy Wayne
Great update T-P. Hopefully more good news in the New Year. Will look forward to another meet up in the sunshine next year. Enjoy your day and also tonight.