Corby firefighter's heroic battle: Raising funds to fuel his cancer treatment

A well-known firefighter from Corby is striving to raise as much money as he can in order to get the treatments he needs for his Stage 4 Sarcoma.

Hilmi Say was diagnosed with Sarcoma Cancer and was told he had just 18 months to live. That was 16 months ago.

Hilmi’s Story

Eight years ago, Hilmi went to the doctors with a lump on his leg the size of a golf ball. He was told it was a fatty lymphoma that was likely benign.

Six months to a year passed. He had no pain and the lump wasn’t growing but he did go back and ask the doctors to remove it.

Due to different complications the operation to remove it kept getting put on the backburner and then shortly after Covid happened and no minor operations were taking place.

Hilmi said: “Because it was benign, it wasn’t ever serious in my mind. I just wanted it removed for vanity purposes. It never seemed serious to myself because the doctor told me it was going to be alright.”

A short time after Covid passed, a lump the same size as the one on his leg, appeared on his armpit.

Hilmi went back to the doctors again and was sent to the breast cancer unit in Kettering, where they did a biopsy of the lump.

They got back to him four weeks later to say it was cancer but were not sure how serious it was, without a full body MRI.

After he’d had his MRI and the results came back, he was told he has stage 4 Myxoid Liposarcoma with bone metastasis, meaning it had spread to most of his bones.

Hilmi said: “I have more bones with cancer than without. They said I had 18 months to live. That was 16 months ago.

“That was horrendous hearing that news. I literally left the hospital appointment with an appointment for chemotherapy. I didn’t know much about cancer at the time. I didn’t know that cancer could be a lump on your leg.

“They said to me that 95 per cent of sarcomas go undiagnosed because people don’t know what they are and only two per cent of doctors in the country ever come across a sarcoma and only 200 people a year are diagnosed. It’s a very rare form of sarcoma and sarcomas are rare anyway, that’s how they justified me being misdiagnosed.“

Hilmi started chemotherapy 10 days later.

“In the meantime when I left the doctors appointment I was with my now wife and just turned around and said ‘do you want to get married’ because we were thinking about getting married anyway and I didn’t know how long I had left.”

Hilmi’s wedding was organised in less than nine days.

“I was in hospital over the nine days quite a lot, while they organised the wedding. It was a full on wedding as well, I had 35 guests.

“I’m a firefighter, so without me knowing the fire service turned up, two trucks, 20 odd firefighters, it was really nice.”

To this day Hilmi has remained employed by the fire service, who have been very supportive of him.

“The fire service has been brilliant, they’ve been supporting me 100 per cent, they’ve kept me on full pay for the entire time. I don’t know what I would have done monetarily if they didn’t keep me on full pay.”

Hilmi then started chemotherapy. Unfortunately, he did not take well to the treatment and was left very ill.

“I read all about chemotherapy and the success rates and it was very apparent that the chemotherapy had very low success rates, like we’re talking five per cent chance of shrinkage of the tumours and zero per cent chance of cure.

“At the time I wasn’t hearing, chemotherapy does it cure you, I was just like a rabbit in headlights, I just wanted to get better, I’ve got kids so I don’t want to die.”

Hilmi stopped his treatment after three months.

“My nails were going black, my teeth were going wobbly, I lost all my hair, my appetite, I couldn’t go to the toilet, I was constantly in pain, stomach pain, constipation, headaches, it was horrible.

“They had me on a couple of drugs. The drugs that they were giving me alongside the chemotherapy was terrible, the steroids would keep me awake all night, and the painkillers would upset my stomach. It was just horrendous, it never felt like I was getting better, it was the worst I ever felt.

“So I decided to stop, I started doing alternative therapies. I looked into diets, tablets, and vitamins, and immune therapies because at the end of the day, your immune system is the one that fights the cancer.

“16 months later I’m here. The cancer is very slow progressing. I’ve lost 7 stone on my diet. I never lost the weight because of cancer or because of chemotherapy, I lost the weight because I went on a diet. My diet consists of fruits and vegetables, organic from organic farms. I cut out refined sugar, dairy, and meat.”

What’s next

During this time, Hilmi has never given up. He wants to give himself a chance of living further and is raising money for special treatment abroad.

“I’ve exhausted every hospital that I’ve been to. I’ve been to The Christie in Manchester, The Royal Marsden in London, all three Leicester hospitals and they all give me the same spiel that it’s a very rare cancer, there is no cure, there is no human trials with a cure for it.

“They’re saying to me that I don’t qualify for certain treatments that are out there for sarcomas like surgery. Surgery is a massive one because the only way to get rid of a sarcoma, really, is to surgically remove it but because I’ve got so much cancer in me they physically can’t remove all of it so they said if they can’t remove all of it, there’s no point removing any of it.

“I’ve always had the argument that surely reducing the cancer load will help my body fight it for longer and they’re not agreeing even though other doctors around the world are agreeing.”

Having done a lot of research, Hilmi has found multiple treatment options around the world that will hopefully give him a fighting chance to live longer.

“I’ve found a couple of hospitals in Mexico, Spain, Germany, Switzerland, and other countries especially Turkey as well which are happy for me to go over and get treatment.

“They’re saying that some of the treatments have success, some of the treatments may not have success but overall they can prolong this way longer with the treatments abroad. They’re also offering me surgery.

Hilmi has spoken to many of these doctors who are keen for him to fly over.

“I spoke to a few doctors on Zoom, over FaceTime, I’ve shown them my lumps and bumps on my body, I’ve given my results over email and they’re all saying come over we can remove this one we can remove that one, this will alleviate this problem that will alleviate that problem but there’s a price tag along with it and unfortunately, you’ve got to pay these people upfront because if you were to die on the operating table, they can’t get their money.

“If 100,000 people donated £5 I’d get exactly as much as I need, to be able to do all these treatments, to give myself the best opportunity to survive, nobody would be out of pocket.

“Everyone can afford a fiver, it’s not even a McDonald’s meal, it’s not even a half a packet of fags and then I’d get the money without friends and family having to put in £50, £100, £150.

“I think somebody donated £250. That’s a lot of money for one household to donate considering the current climate in the UK with the electricity costs and the cost of living going up.

“I feel bad and I feel a bit ashamed, begging on the internet for people to give me money for an operation but I have no choice, if I want to survive long term, if I want to see my daughter get to university age, she’s only 14.

“I’ve exhausted everything. I’ve sold my car, I’ve remortgaged my house twice, I’ve taken out a loan, I’ve maxed my credit card, because I thought I’d be able to afford to do this myself and unfortunately I can’t.

“I’ve spent maybe £50,000 to £60,000 extra on top of my wage. I've probably spent about £80,000 this year on alternative therapies, weird and wonderful medicines from abroad, different countries, holistic therapists, herbalists, you name it, I’ve done everything I can try.

“I’ve been doing everything I can to keep myself healthy and strong and try and starve the cancer and it’s just not working because I need surgery, I need the cancer removed and then let my body do the rest.”

The fundraising goal on Hilmi’s Just Giving is set at £450,000 but ideally he needs to raise as much as he can in order to have the best fighting chance of prolonging his life.

In just a couple of weeks, friends, family and the community have already managed to raise more than £18,000, a substantial amount but still only a drop in the ocean of what he needs.

As well as a Just Giving page, a Facebook group has been set up so that everyone can stay up to date with what events are being put on to raise the money for Hilmi.