My Head and Neck Cancer Journey – Liz’s Story

My journey began in late 2020, when I noticed a lump (around the size of a grape) on the outside of my neck. Like many people, I went to my GP and was referred to ENT in Winchester Hospital for an ultrasound. They told me it was probably just an overactive gland and to come back in six weeks if I was worried. I did go back, and again they said it was nothing. Probably viral-related and it would (should!) go down.

For nearly two years, that lump stayed there, unchanged.

Then in November 2022, everything shifted. I was competing in the Triathlon World Championships in Abu Dhabi when I noticed something ‘different’ in a hotel bathroom mirror. My tonsil on the same side looked larger than the other one and something felt ‘strange’ at the back of my throat. Had it not been on the same side as that original lump, I might have ignored it. But the coincidence worried me, so when I got home, I went back to my GP.

This time I was referred onto the two-week pathway. What followed was four weeks of appointments for a whirlwind of tests; ultrasounds, Fine Needle Aspiration (FNA) of the lump, MRIs, blood tests, CT scans. I was fit, had no other symptoms; no weight loss, no tiredness, nothing that hurt. I honestly thought they’d tell me it was nothing.

So in early 2023, I bounced back into ENT in Winchester thinking exactly that.

But instead, they told me that they’d found “something nasty”, that needed further investigations. They never actually said the word cancer, instead handing me a letter saying I’d been given some “devastating news” and did I have any questions? My head was spinning, of course I knew they meant cancer but wasn’t sure, and couldn’t process it. I just wanted to leave.

The next 6 weeks were the hardest part of my entire journey. I was left in limbo, not knowing if this was really serious, as they were x-raying my lungs, or if it was just a storm in a teacup. Was I dying or was this nothing? The uncertainty was very difficult to manage.

When the final diagnosis came in early February, it was HPV-positive tonsil cancer, which had spread to two lymph nodes. And I’ll be honest, it was almost a relief to hear the word ‘Cancer’. Finally, I knew what I was dealing with.

I was offered two treatment options: six weeks of radiotherapy in Southampton, or I could join the TORPEdO trial for proton beam therapy (plus chemo) at The Christie in Manchester. Initially, Manchester seemed too far from home. But then I realised that being away would let me focus entirely on myself, without trying to maintain my “mum duties” at home.

So in March 2023, I headed to Manchester for nearly seven weeks of treatment. The proton beam therapy was part of a trial comparing ‘protons’ to standard radiotherapy. The theory being that it could target the tumor more precisely with less damage to surrounding tissue. I felt privileged to be part of it, though it was surreal being treated in a brand new facility where the only other patients were children with brain tumors. The resilience of both the children and their parents was extraordinary.

The treatment started benignly enough, but the pain built relentlessly. By the end, I was on significant amounts of morphine. I was determined to keep eating though; I didn’t want a feeding tube, and I wanted the best possible long-term outcome. ‘Five Guys’ milkshakes became my salvation. Pile in all the flavourings and you can hit 1,300 calories per shake. I can’t even walk past ‘Five Guys’ now without getting PTSD!

I rang the bell on 19^th April 2023, but the pain continued to build for another couple of weeks. It took about three months to feel somewhat normal again. Then in September, just five months after finishing treatment, they found some more pre-cancerous cells behind my wisdom teeth, possibly caused by the treatment itself. The surgery to remove them set me back yet another four months.

It was a full year from diagnosis to where I am now. I wouldn’t say that I am “normal” though. I have a dry mouth, can’t open my jaw very wide (I use something called a Therabite, twice daily to stretch it), I need water to swallow down any food and recently have developed a strange tingling sensation on my neck. But I’m here, I’m functioning, and I’m living my best life.

Throughout treatment, I was determined to show my children, then 12 and 14, that cancer wasn’t a death sentence. When I first told them and my son asked “How long have you got, Mummy?” It broke my heart. I was determined to show them that cancer is not always a death sentence, that I was going to fight this and they didn’t need to be scared. So I sent home daily TikTok and YouTube videos from Manchester, not always cheery, but showing I was still me. They visited me several times and saw that the hospital was actually a lovely place, not the scary environment they’d imagined.

Having run the local vaccination centre and being a GB triathlete and ocean rower, I drew on everything I’d learned about resilience. I walked 7km each way from my accommodation to The Christie Hospital each day, just to stay active and to be outdoors. Sure, I had my “why me?” moments, but I kept reminding myself that everything we go through in life makes us the people we are today. This was just another building block.

My sister, being a GP was invaluable, without her I would have felt abandoned in those early stages. Now, working for the NHS, I try not to assume everyone has the “first class” experience I feel I had. But it certainly helps me understand the system from both sides.

Looking back, if this had been the end, I’d had a bloody good life with no unticked boxes. But thankfully it wasn’t!

I want people to know that cancer doesn’t have to be a death sentence, and I feel genuinely privileged to have experienced both the NHS and humanity at its best. With huge thanks to all my supportive family and friends around me!