Dad having palliative care for mouth cancer

Hi, I am new here so thought I'd introduce myself.

My Dad is 82 and was diagnosed with stage 4 squamous cell carcinoma floor of mouth on 18/12/19. He was given the choice of radical surgery followed by radiotherapy with a 50/60 % chance of success but leaving him with severely impaired quality of life, or radiotherapy on it's own to possibly extend his life but with no guarantee of working, or to have no treatment but palliative care and to try to enjoy the time he has left, which they said would be "months".

It has been devastating as he was a great 82, very active and independent, doing his exercises and generally acting like he was much younger. 5 months down the road and he is a shadow of his former self, unable to eat so he survives on Fortisip drinks.

The level of care he has received has not been what I expected and I have had to fight every step of the way to get him the pain relief and medical attention he needs. It's been a constant battle and became worse due to the COVID 19 situation.

He lives alone at home and I have been allowed to visit him every day, despite the lockdown as his care team advised that terminally ill patients in his situation would be classed as extreme circumstances and I am caring for a vulnerable person.

We don't know how long he has left or even much about what is ahead for him. He has no regular visits from anyone, apart from the district nurse who has been  coming every week recently to change the dressing on a sore patch of skin he has developed.

I think I am rambling now, I could write pages and pages but this brief outline will do for now.

Thanks for reading x

  • Hi I'd like to introduce myself my dad is at late stage terminal with Mesothelioma. It's caused purely by Asbestos and he got it when he did national service at 18 years old they think! He's 82 now but has always been soo active. He was diagnosed nearly a year ago now, end of June. I'm very grateful that he had 6 good months where he was relatively unaffected. Unfortunately now things are on a rapid decline, mum had to call 999 twice in 24 hours as he fell then got stuck. It's hard because he hasn't let me go up since mid March as he knew he was getting worse and won't let me see him like that. His wish is basically that I remember as the man he was 6'3 and very chirpy and not as he is. They've just visited and put in the equipment so he can remain at home which is his wish. I'm trying to care remotely which is tricky. Was hoping someone may have some input on late stage Mesothelioma.

  • Sorry to hear what you are going through. Can't offer input on Mesothelioma but I do know how difficult it is to watch a parent deteriorate in such a horrendous way, no matter how old they are it's heartbreaking to see x