Fundraising for my rare cancer treatment

This GoFundMe campaign is to raise money for my immunotherapy treatment of Pembrolizumab and the next patient. Each round of treatment costs £9.5k. Thank you to those incredibly kind friends who have already donated. It is truly humbling to know I have your support. Any help would be amazing and immensely appreciated.

I was diagnosed with an 8cms tumour in my heart 15 months ago, given 3 weeks to live unless they operated. Thankfully the amazing NHS surgeons successfully removed 2 tumours from inside my heart. Unfortunately it has now spread to my lungs. I now have stage 4 intimal sarcoma cancer of the lungs with about 10 tumours in each lung.

So far I've had 11 rounds of chemotherapy. None of which have managed to halt the growth of my tumours yet. My options are running out and now I am seeking private treatment in the form of immunotherapy. The Harris and Trotter Charitable Trust have very kindly agreed to pay forward for my treatment. I am therefore now aiming to raise money for their charity so that the next rare cancer patient has a chance of benefitting from their incredible support.

Health permitting I plan to cycle from Marseille to Naples later this year to raise money for the Harris and Trotter Charitable trust. A total of 773 miles approximately.

My 'sob' story is as follows...

Back in 2015 my darling late wife Jackie, was diagnosed with a very rare form of cancer called sarcoma. Jackie battled for 2 years and was bedridden for the last 6 months. Surgery was not an option and very sadly no amount of chemotherapy, radiotherapy or even immunotherapy could save her.

As I held her hand in the St John’s hospice day and night, watching her slowly slip away, I had no idea that I would be in her very shoes 7 years later.

Cut to November 2022 I was struggling to walk up a flight of stairs without being out of breath and dizzy. I spoke to a friend who is a doctor and, on his advice, went straight to the John Radcliffe Hospital and checked myself in.

Within 5 hours, the doctors had diagnosed my condition - there was a very large tumour inside the left side of my heart and unless they operated I had about 3 weeks to live. 7 days later I underwent a 9-hour open heart surgery where the amazing NHS surgeons removed not 1, but 2 tumours from my heart (8cms and 3cms). The recovery was brutal.

I went home after 10 days barely being able to walk. 3 days later I was rushed back into A&E in the early hours of the morning, unable to breath due to a lung infection that required my lung to be drained. It took me 2 months before I could even sleep lying flat, and I can honestly say that there were some very dark times physically, mentally and emotionally.

Whilst I had been told that most cardiac tumours are benign, I was not so lucky. Biopsy results confirmed that my tumours were in fact malignant. And they were sarcomas! What were the chances? I had the same cancer as my Jackie!

Insanely rare and unlikely but nevertheless, the fact remained, I knew only too well the battle that lay ahead of me.

Recovering well from open heart surgery, in January 2023 I had a PET scan. Bad news followed. The cancer had now spread to my lungs and I was classified as Stage IV. Incurable and given 6-18 months at best. So, what next? The dreaded chemo was my only option. Doctors wanted to take some biopsy material from my lungs, but I was too weak to undergo another invasive operation, so we decided to start chemo asap.

I had 3 allergic reactions to Calyx chemotherapy, incredibly painful and deeply unpleasant to the point of feeling like I was literally dying from the poisoning to my body. Thank God for the incredible MDU nurses and doctors on hand at the Royal Marsden who saved me each time by immediately pulling the IV and injecting me with neutralising painkillers. And after 9 months of going back and forth every 3 weeks for treatment my tumours have not disappeared but now have only increased. I currently have 10 tumours in each lung and another beauty on my heart. Deep joy!

The fact is I have something so rare and wonderful that no standard treatment is effective as a curable solution. In western medicine doctor's minds, my situation is incurable and managing my quality of life is the best outcome I can hope for. This is something I do not accept. There is always a solution.

So what is the solution?

I certainly don't have all the answers. Navigating cancer treatment and care is a complex minefield with so much conflicting information to process and digest. If I can help in any way to reduce the burden for fellow patients and future sufferers, then I would very much like to do so. And at the same time if we can help the NHS oncology teams around the UK to gain the benefit of more research and insights so that they have the tools and assets at their disposal we will hopefully be able to help improve the treatment options for future patients.

Something positive has to come out of all of this.

And that is why I have set up the rare cancer awareness brand, Soulheart

My intention of Soulheart is to help others in a similar difficult situation by designing (which is what I do) a logo and product range that starts the conversation with people who are proud to wear the logo with the aim of raising the visibility and knowledge of sarcoma and any other rare cancer types. I want to shine a spotlight on this rare cancer, and other rare types, for people to understand what it is, how testing and demanding it can be and the brutal battle patients like myself face.

I was given 3 weeks initially, and then told that I had 6-18 months at best. 12 months on, I'm still here, feeling better each day. I'm not going anywhere just yet. I've got too much living to do.

As a friend said to me recently: 'Well don't go and die mate, that's way too boring and predictable!'

Wise words of advice that I remind myself of daily, as I live each day to the full and in the moment. My advice is, live for the now.

Thank you for reading my depressingly melancholic story, any support you can give me and the next patient is immensely appreciated.