Hi all,
Been following the discussions for some time but this is my first time posting, just wanted to share my experience of my treatment journey ( I know everyone's experience is different).
I was diagnosed with T2N1M0 HPV16+ tonsil cancer (right) in March 2024 (just a couple of weeks after my 40th birthday, I had been hoping for a wee holiday abroad as a surprise), got both my tonsils removed the middle of April and started chemo/radiotherapy start of June.
I had my 35th and last radiotherapy session on Friday and managed to cope with 6 rounds of chemotherapy (cisplatin) apparently I have been given the gold standard treatment (never been that successful at anything so to get gold makes me quite proud).
I think that I have been quite lucky with my treatment in terms of side effects (fingers crossed that continues) in that up until my final week I had been able to cope pain wise on 2 paracetamol before bed. I lost my sense of taste towards the end of my second week and around that time my mouth started getting very dry. My diet started changing and most foods became quite difficult to eat due to dry mouth and I slowly moved to a softer food intake. The gels and mouthwash definitely helped. My current diet is 3 2cal shakes a day with a pro-cal hit in each, Weetabix for breakfast with milk, potatoes and lots of gravy for dinner and custard and glass of milk for supper. The past week though my ulcers have got worse and the secretions are making me cough and gag alot (using mucodyne syrup which works) but all in all the worst thing I have experienced pain wise was getting my tonsils out. Chemo days were long but I found the most difficult part of it to be dealing with the effects of the steroids, I just couldn't sleep for a few days after.
My once glorious beard is no more due to the radiotherapy but it's a small hopefully temporary price to pay. It's now just the waiting game until my 12 week scan.
As I say, I know everyone's experience is different but just wanted to share my own to show people that not everyone will go through the worst of the side effects.
Oh this is good to know Hazel. I’ll give strawberries a miss then. Today for lunch I had a crepe with stewed apples and cinnamon. I had to add a fit of sugar to make it taste like something. I was thrilled to get it down without chasing it down with liquid.
You’re right. Early days. At restaurants I stick to soup . I have coped with tinned pineapple. Had some on a pizza and it was fine. Not tried fresh yet I’ll hold off for now 
At restaurants I stick to soup
Pasta was a godsend eating out.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
We’re meeting with a group of dingy sailors this weekend
That brings back memories. My daughter used to teach at Queen Mary Reservoir. Her favourite dingy was a Laser.
She got a Blue at Cambridge but gave sailing at uni up saying her crew were unsafe on rhe water as they spent too much time being drunk the night before any races.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Sometimes I’ll have a banana
Banana and avocado ( throw in peanut butter if you want) are a winning combo.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
