Matt’s story

Matt’s story

News Description

I was diagnosed with Ewing’s Sarcoma in November 2007. I was an extremely active 16-year-old, who assumed an innocuous tackle in a football match was causing the pain and swelling in my right heel. But after two months of investigations, I was told I had a rare form of bone cancer: Ewing’s Sarcoma.

The next few weeks were a whirlwind of activity. I was diagnosed on a Friday, and on the Monday, I was expected at University College London Hospital to begin tests and treatment. I had CT scans of my chest, full body bone scans, heart, and kidney function tests, and the most painful of the lot, a lumbar puncture to ensure my bone marrow was healthy.

Thankfully, after three days of tests, the hospital doctors said the only evidence of the cancer was the tumour in my heel bone. So, chemotherapy began. No-one really knows what to expect when you have chemotherapy. People who haven’t  seen a loved one having it, or received it personally, don’t know what it is. I was hooked up to a drip for four consecutive days. I had a PICC line inserted, which went in my arm and ended just outside my heart, through which a number of horrible drugs were pumped.

So, it didn’t really sink in that I had cancer until that first treatment was over. We got home, exhausted, and then the side effects of the treatment began. I got painful mouth ulcers, I was tired, and my immune system crashed, meaning I immediately got an infection and ended up in my local hospital having antibiotics. I was frustrated, confused, and scared.

This was a pattern that lasted two months, until after a painful and very ill Christmas I went to see my consultant to discuss the options for surgery. I went into the appointment with high expectations; I came out knowing my consultant recommended I have a below-knee amputation. Having cancer had been bad enough already, the thought of losing a leg was unacceptable for someone who lived to play sport and be active.

For a further two months I wrestled with the decision of whether to have my leg removed, or whether to ask the surgeon to do something different. So, on the morning of my operation, my mum, dad, and I went to the Royal National Orthopaedic Hospital at Stanmore, not knowing what would happen.

I sat down with my doctor, Dr Rob Pollock, and discussed what we should do at great length. So, literally an hour or two before I was due to go under the knife, we decided; I would have an amputation – with the compromise of him leaving me an extra inch of “leg” left.

When I came around from surgery, I wouldn’t look at my leg at all. I didn’t want to accept what had happened to me. I was on so many drugs for pain relief the rest of the week was a bit of a blur. I remember watching rugby on Easter Saturday, waiting to see whether I could go home, five days after my surgery, finally getting the good news that I could go leave.

Next Wednesday, I was back at school. The thing that kept me going during my first lot of treatment was seeing my friends and doing my schoolwork. I think it kept me focused on something and allowed me to block out my emotions when they threatened to overwhelm me.

But chemotherapy didn’t finish after surgery. Two weeks after losing my leg I was back at UCLH for my post-operative chemotherapy. This time I was to have eight cycles, as opposed to the six I’d had before my operation.

Strangely, these cycles were worse. I didn’t react well to one of the drugs that was used, and it made me feel really ill. It took the hospital a while to get this under control, so the first few cycles made me really sick.

But thankfully it passed, and after some delays I was nearing the end of my treatment. But this scared me more than staying on chemotherapy. I’d got used to having chemotherapy, and I felt safe in the knowledge that whilst I was under treatment, the cancer couldn’t come back. What if I stopped chemotherapy and it returned?

This was a difficult period for me. I felt like my safety net was being taken away. And initially, after getting the all clear, I struggled to cope with this.

But I was slowly getting further away from treatment, six months, then a year, then two years. And then I got some bad news. My consultant phoned me about a week after some scans I’d had, to say he’d seen something he didn’t like. So, I was back to the old tests; CT scans, bone scans, everything again – much to my back’s displeasure, another lumbar puncture.

And then the news I was dreading. It was back; this time in my lung.

In a way, I was really relieved – it was just one tumour. I’d convinced myself it was going to be the worst news; that there was nothing they could do at all. But my consultant was optimistic, so I went back up to UCLH to start treatment again.

So much had changed at the hospital in the two years since I’d left. Both the drugs I was treated with had been used before though, so I was at least used to something. And this time, I had other things to contend with.

I had to drop out of University because the workload was too intense to keep up with part-time, which meant I had a lot more time to myself, and mentally I was affected a lot more than first time around, when I had had things to take my mind away from cancer.

I was also treated on an adult ward. This was difficult because for the first time since I’d been treated, neither of my parents could stay with me overnight. This was a big thing for me because I was often very unsteady on chemotherapy and was worried about going to the loo during the night on my leg.

I had two cycles of chemotherapy before surgery this time around. We had gone up to UCLH expecting to have a third chemotherapy, but my consultant, Dr Whelan, had said he’d changed his mind, and was sending me for surgery because my scans were good. A week to the day later, I had the tumour removed.

I was expecting to be out of hospital pretty quickly after my chest operation, but it was much more painful than when I had my leg removed. We had to wait for my lung to heal before they could remove the chest drain, and then we had to wait for them to wean me off of the pain relief before they would let me go home.

I was released on the Thursday after my surgery, which had been on the Monday, which was considered really quick. But sneezing and coughing was still really painful, and I couldn’t sit up after sleeping, so I needed a handout of bed.

Between the surgery and the post-operative chemotherapy, I had a lot of time to think about things and weigh up what I wanted to do. It was during this period I decided I wanted to start a charity, to fund research to improve treatments.

So, I went on to have my high dose chemotherapy, which involved three weeks in hospital, having stem cells pumped back into me, and losing my immune system for a couple of weeks. It started well, and we were wondering what all the fuss about until my immune system finally crashed.

Then all hell broke loose. I ran a temperature for about six days, didn’t eat anything, barely had anything to drink, and nearly ended up in intensive care.

But the important thing was that I came out the other side and started to recover from the effects of the high dose. My bloods improved, as did my energy and I slowly started to find my feet again.

Needless to say, helping run the ESRT keeps me busy. It gives me a lot of pride to say I’m doing something to fight Ewing’s Sarcoma, to try and give something back to the people who’ve worked so hard to keep me alive.

If the work we do through this Trust goes towards saving the life of one Ewing’s patient, it will all be worth it, because someone else has the chance to live a life they may not otherwise have enjoyed.

Matt returned to university and graduated in summer 2013.