I was diagnosed with tonsil cancer in November 2020, having contacted my GP originally about a sore throat on the left hand side of my throat. He referred me to an ENT Consultant who said it was most likely due to stress as I had just lost my mother to cancer. However, he then did an endoscopy, saw nothing and made me have an MRI scan 'just in case'. The scan discovered nothing on the left hand side but did find a mass on the right hand side. A week later, in early November, I had a biopsy, was referred to an ENT surgeon who confirmed that I did have a carcinoma in my tonsil that had spread to a couple of lymph nodes in my neck.
The options were chemo/rad or an operation to remove the tonsil nad lymph nodes. I chose the latter and in early December had the operation. It was discovered that more than 2 lymph nodes had been impacted and that one had 'burst'. I was the advised to have chem/rad - consisting of 5 chem sessions and 33 daily sessions of radiotherapy starting as soon as everything had settled from the op. The pain from the op was immense and I took daily codeine, paracetamol, oramorph (just so I could eat). The Tuesday before Christmas I had an intense stabbing pain in my lower stomach and (as a result of the original MRI scan had been referred to a urologist as there was also a small mass in my kidney) and didn't feel so good. Had a further MRI scan on Xmas eve for the kidney and got a call 2 hours later to say, yes there is a small mass but what was worse as that I had perforated my colon, which is life threatening. I was asymptomatic but referred to a gastro-intestinal surgeon, who fortunately lived near me and went to his house and he prescribed heavy duty antibiotics. The whole experience would delay the chemo/rad.
Treatment was scheduled to start 18th January but my father (who subsequently succombed) who I had seen and was in our 'bubble' got Covid so treatment was delayed again until 1st February.
Chemo/rad is unpleasant. The chemotherapy make you feel bloated, and the steroids, anti-sickness drugs cause constipation and impact sleep patterns. To start the radiotherapy caused no side-effects. One of the first things to go were my taste buds - and although I had been advised prior to 'stuff my face' to bulk up I had to be careful to avoid a repeat of diverticulitis that had caused the perforated colon.
As my treatment progressed I had good days and bad days. Chemo was always on a Monday and due to the steroids I always fet OK through to Wednesday then on Thursday - crash! When I stopped the chemo I started to feel a bit better but the effect of radiotherapy is cumulative so by week 4 I was suffering from the side effects - ulcers in my mouth, painful throat (again), sore skin. Fortunately the hospital gave me treatments to mitigate the impact - namely Caphosol for my mouth, and they recommended StrataXT for my skin - it's not available on the NHS and bloody expensive for a 50g tube (£110.00) but it certainly helped. Eating was a struggle, not just due to loss of taste, but lack of saliva (another side effect) and I only ate soft foods. I was warned that if my condition worsened I could be hospitalised. (I was told up to 50% of patients at this stage are hospitalised). I finished radiotherapy on the 17th March but the impact of it continued to increase so was given protein supplements and only ate 'liquidy' foods like scrambled eggs, porridge, mashed avocado, although it made my mouth hurt more.
I am now 2 weeks post treatment and my recovery has been described as ‘remarkable’ and ‘inspirational’. I was fortunate to not have to work from January, and I followed, to the letter, the treatment regime. It is a full-time job, taking meds, resting when tired, not stressing about anything, taking small bits of exercise, eating (especially when you can’t taste anything). The pain in my throat has more or less gone, my skin has more or less recovered but will continue to require attention for the foreseeable future with Diprobase once the second tube of StrataXT has finished. I still can’t taste anything but am back to eating normal solid food. My follow-up scan is being scheduled for June and my feeling is that I will be cancer free in my throat.
I consider myself incredibly lucky, having the tumour caught early and the swiftness of the operation and treatment plus the amazing care I received, as well as the support of all my family and friends.
