Ryan Fox, 23, from Blyth, was diagnosed with rhabdomyosarcoma in October 2023. He took part in the FaR-RMS clinical trial, which involved intense Chemotherapy and Proton Beam therapy. He had most of his treatment on the Teenage Cancer Trust unit at Newcastle’s Northern Centre for Cancer Care, at the Freeman Hospital in Newcastle, and had Proton Beam therapy in London at UCLH.
“I had a strange journey to my diagnosis. I had lumps on my neck and waited a couple of weeks to see if they’d go down, then took a trip to the GP who said it was probably swollen glands. I was told to come back after two weeks if they hadn’t gone down, which I did, then they booked me for a scan.
“After four weeks I didn’t have an appointment, so I called the GP to chase it up but was told that I’d just have to wait.
“By now I had quite big lumps on my neck and under my chin and by mid-September the left side of my neck was really swollen and painful so I went to A&E. They took blood, and said I was fine, but that they couldn’t do a scan as it was past 8pm. When I went back for the scans, shortly afterwards, a lady took me into a room and said it could be cancer. I was with my partner, and we were both completely shocked. I’d had a feeling that it could be cancer, but when I heard the words my heart just dropped.
“Everything moved quickly after that. I had a biopsy and then two weeks later, on 16 October, I got a call at work. I was on my break, so I answered it and was told, over the phone, that I had cancer. I was taken aback in shock. I was going to go home but I stayed at work to keep my mind off things.
“At that point I had no idea what stage it was at or what type and had to wait for my consultant appointment on 30th October. Shortly after that appointment I was referred for a PET scan and was later diagnosed with stage 3 Rhabdomyosarcoma.
“The cancer had started on the left side of my nose and then spread to my lymph nodes. If I didn’t have the lumps I would have had no clue. I was fine and healthy, at work, and had no sickness. I was signed-off from work and started Chemotherapy straightaway.
“I was in the Teenage Cancer Trust unit for my treatment, and it was nice. I’d sit in the dayroom and play games with other people. I met other young people who were going through the same thing and was able to socialise without having people worried or constantly asking if I was OK. The nurses were great too, so welcoming.
“There were social events outside of the unit too like golf days, a panto at Christmas, and a Lads Only social where we went bowling and had food.
“I was on an adult ward for a short time when I had my Hickman line put in and it was totally different, there was no privacy and everyone was a lot older than me and there was no smiling or laughing. I think staying there long term would have been lonely.
“I have a young daughter, she’s only six, and during my treatment it was really tough as there were weeks when I couldn’t see her. Like when I had to go to London for Proton Beam therapy for 6 weeks, I missed her so much. She’s so young that she didn’t understand what was happening. Sometimes it was really hard as I was so sick. The first time I saw her after I had a feeding tube fitted, she was a bit scared but she got used to it.”
“My partner has been amazing throughout all of this. There were times where she took long periods of time off work to look after me. I also had a big support system of friends and family around me.
Life post-treatment
“I had my final dose of chemo on 18th May and I’m now in remission. I’ll be taking tablets for the next year then potentially another 12 months after that, depending on how I am and the needs of the trial.
“I’m trying to get back to normal, since having my hickman line out I was able to take my daughter swimming after being restricted beforehand. But I’m still really weak and need to get my strength up. I can’t do things like doing up buttons or tying laces yet as my hands have been damaged by the chemo.
“I work in a warehouse and I’m hoping to get back to work soon. I’ll be easing myself back into doing 15 hours a week to begin with.
Clinical trials
“I was given two options – the clinical trial option was 9 months of intense chemo followed by 6 weeks of proton beam therapy, then a year of maintenance. The standard option would have been 7 months of chemo. I was told that the clinical trial could give me a better chance of getting rid of the cancer for good.
“I was given a load of leaflets and things to help me decide whether or not to take part but they were difficult to understand so in the end my friend’s Mum who is a nurse came to my appointment to ask loads of questions to see if being on the trial would be right for me. I think the new website with videos and other information about taking part in clinical trials will be really useful, and I hope it helps other young people who are in my situation now who are having to make a choice about what treatment to go for.”
