Estelle,

I also belong to a few Facebook groups, but I do not rely on them for reliable information or support. I also found some of the folks on there to be outright mean to fellow survivors or caregivers - that is not the reason you join these groups!

I have found the OCF website and forum to be the best source of reliable information and support. Through OCF I have met other local OC survivors by attending some of the many OCF events (walks) that are held throughout the USA each year. There are face-to-face support groups in some locations, but not near where I live. I don't know what is available in England, but perhaps there are some support groups in your area. It really does help to connect with fellow survivors. In some cases you should ask your doctor, but that isn't always practical when you have a question at 3AM.

If you are looking for answers to certain questions you have, try using the search function for the forum. I've used this a lot over the years to read what other survivors have gone through.

Wishing you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)