Hi,
I just wanted to put my own experience out there and see if anyone can offer any advice. I am a male aged 59 I was diagnosed with Tonsil cancer in Sept 2025, I underwent Chemoradiation 5 Chemo and 35 Radiation finishing Mid January 2026. Weight dropped from 12 stone to 10 stone. Was in hospital for last 3 weeks of Radiation. Once home was eating soft foods, mouth much smaller so Trismus was in place. Started suffering bad headaches and struggled to eat food so lost more weight. Was admitted to hospital mid May 2026 for some TLC and to help me gain weight. It was then found that I had a hole in the back of my mouth around the size of a golf ball in diameter id say I also had a very sore shoulder and stiff neck which I think was Fibrosis of the neck from Radiotheraphy. Apparently once I ate food orally it was tracking over into the neck via the Hole in my mouth and infecting it with any bacteria that was in the food. I was then put on a Rig and told to not to eat or drink anything orally to the infection could be cured which was done using Antibiotics. I have now being told I need to have a free flat op to fix the hole in my mouth. Im not sure if this will help the shoulder pain subside. The Oral mucous is now worse then it was even when undergoing Radiotheraphy. Just wondering if any members have had similar experiences and any advice.
Hi Miked and a very warm welcome to the Macmillan Community but so sorry to hear about the journey you are on.
I know from experience having been on my cancer journey for over 26 years (first diagnosed in 1999 at 43) with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) then Asbestosis and recently Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….
…….. support group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
