my story

SOULHEART IS A NEW BRAND THAT IS RAISING MONEY FOR RARE CANCER RESEARCH AND TREATMENT.

WE DONATE PROFITS TO SARCOMA UK AND THE HARRIS AND TROTTER CHARITABLE TRUST FOUNDATION TO HELP FUND THE RESEARCH AND TREATMENT OF FUTURE RARE CANCER PATIENTS.

SUPPORTING THE 1% WHO FALL BETWEEN THE CRACKS

THE STORY with cancer…so far

Back in 2015 my darling 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.

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.

unless they operated I had about 3 weeks to live.

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 had been diagnosed with intimal sarcoma, approximately only 5 people a year in the UK are diagnosed. 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 neutralizing 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!

What were the chances? I had the same cancer as MY Jackie!

I currently have 10 tumours in each lung and another beauty on my heart. Deep joy!

I am stuck between a very large rock and an impenetrable hard place.

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.

People in my position are given little-to-no options, and due to reduced funding and stretched budgets within the NHS, access to cutting edge technology or innovative treatments is limited. This is only compounded by the absence of clinical trial data, which just hasn’t been possible to collate as it’s not been carried out enough in treatment trials on controlled groups of patients for rare cancer type cases as there aren’t enough patients. This makes it even harder to properly assess or prove that these new advanced treatments could work for rare cancers like Sarcoma. A typical catch 22 situation if you like.

At the same time there is limited evidence to suggest that standard practice of care treatments work either as rare cancers are renowned for being stubborn and aggressive to treat. Long term cures are miracles and in the majority of cases available chemotherapy treatments merely prolong the inevitable. I am currently stuck between a very large rock and an impenetrable hard place.

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

So what's the solution? I certainly don't have all the answers, but I do think that if I can use my experience and situation to draw attention and highlight the limitations patients like me face, then I can do something good to help benefit future cancer sufferers.

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.

So my intention is to design (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 have partnered exclusively with Sarcoma UK and will be donating 25% of all sales to their sarcoma research and treatment fund. The remaining profits will be evenly distributed to the Harris & Trotter Charitable Trust and other independent charities for rare cancers we identify in the future.

STILL HERE AND STILL FIGHTING

I am currently undergoing chemotherapy again now. 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.