Hello everyone, I'm new to the site. I was diagnosed with stage T4a N0 M0, p16 positive squamous cell carcinoma of the right tonsil. (m54)
6 weeks of treatment starts for me tomorrow with 2 lots of chemotherapy and daily radiotherapy. Been a very busy few weeks, ensuring my teeth are up to scratch, CT and PET Scans, Feeding tube being fitted and various other bits and piece prior to treatment. None of it is pleasant.
I had to have surgery in the end to get the feeding tube (RIG) fitted. The initial attempt under local via my nose was not successful, but I was lucky enough to get be squeezed in for an op. It's been about 4 days now since the fitting.
Wanted to ask others who had a feeding tube if you had experienced any cramping/twinges/spasms in the days following installation? Every now and again I seem to get this very painful twinge/cramp - perhaps when my breathing is slightly deeper, certainly when I cough it hurts and lying down seems to be worse than standing up. When not twinging, everything feels ok and tube flushing seems fine. It's quite intermittent, but sitting down can be as much as once every 5-10 minutes.
I ate quite a bit for supper last night, and it was very painful afterwards - I'll be taking easier tonight! Walking definitely seems to help a lot. Has anyone else experience something similar? - it's difficult not to worry when things are not going as expected.
Thanks,
David
Hi David DBa and a very warm welcome to the Community but sorry to hear about your diagnoses.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).
The New to Community is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Sarcomas support group. This will be 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 below
…… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself 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.
You may find it helpful to call the Macmillan Support Line open 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/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
Do get back to me if you need further help navigating the community.
