I have recently been diagnosed with hpv tonsil cancer for the 2nd time. I went for what was going to be my discharge appointment but actually was the start of it again. I can't have treatment this time because I had osteoradionecrosis & was told it would make my jaw worse. I have to have an op but I'm scared because of the affects this op can bring. Can anyone who has had this give any advice? Xx
Hi Joeyfrankie and a very warm welcome to the Community but sorry to hear about your diagnoses….. I understand the feeling as I have relapsed multiple times over my 24 years with my type of cancer.
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 direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Head and Neck Cancer support group. This 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 click on this link>
…… then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. 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.
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.
Hi Joeyfrankie I'm Dani and I hang out in the Head and Neck Cancer Group. Take Mike's advice and join us there. There are a few of us who have had multiple ops to try to get rid. We are friendly bunch. There will be somebody there to talk to.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
