Struggling mentally with recovery after head/neck radiotherapy

Hi Gosman Sorry to hear the issues you are  going through. I. Trying to think of someone through the last 7; years who has been through similar issues to you. Are you near any late onset side effects clinics there’s a very good one at Nottingham run by Emma Hallam .You should have a specialised cancer nurse at your hospital not sure where you are? They may be able to refer you or contact the Nottingham team. 
I’ll have a think and pop back in later if I can come up,with anythjng. I do have a small amount of at the back of my neck I had 35 radiotherapy sessions and 2 chemo

Hazel 

Hi Hazel, thanks for getting back to me and apologies for my delayed reply. Well done on your 6 years free. Something for me to aim for. It will be 2 years in June since my surgery. 
I live near Harrogate so Nottingham is a bit far away. I’m 77 years old and pretty fit. Go to the gym twice a week, though festive holidays have prevented that for now. I’ve done a couple of marathons in my time and the Great North Run a few years ago and numerous 10/5Ks. 
My biggest challenge is keeping my head in a good place, although I am getting better at pushing the demons out! These cold miserable winter days don’t help of course. When I hear of others who have lost facial features, had jaw bones transplanted I do appreciate that I’m in a better place than some. I guess we all have our own challenges when it comes to dealing with the recovery. 
I’ve enjoyed reading your blog which I find very reassuring. It certainly demonstrates there is still a good life to be had. Patience is probably something I’m lacking, expecting healing to happen much faster, but you’ve demonstrated that with patience things will get better. Thank you. I’m also dealing with a recurring niggling inguinal hernia, repaired 3 years ago. 

Colin

Hi Colin. Yes it takes time some weeks 2 steps forward and one  step back. Presume you were treated at Leeds cancer centre like me? We don’t yet have a late side  effects clinic something that’s being worked on. But we do have a Maggies centre at Bexley wing it could be worth you getting in touch with them. Hopefully you are  stop having checks every 3 months or so? I would mention to your consultant as well. 
Thank you for reading blog hope you picked up a few tips. 
Yes as my mum used to say patience is a virtue I didn’t use to be but I am now  

Best wishes 

Hazel 

Hi Gosman. It does take a while to come to terms with the 'new normal' after having head and neck cancer. It sounds as though you are doing everything you can to take some control and your fitness level sounds impressive. I am 71 and a few months ago started lap swimming (very slowly) and have found the exercise so beneficial. I have never enjoyed exercise but I have found that swimming is my thing although I am not great  at it. It makes me feel that I am taking some control of my life and makes me feel much more confident. I have been on the cancer journey since 2013 for jaw cancer and then in 2019 and 2022 more ops so understand the  'late effects' issue. We just have to press on regardless and take the wins as they arise and come to terms with the loses. I still enjoy my life enormously although I have found that adjustment takes time.

Wishing you all the best

Lyn

Hi Lyn, thank you for your encouraging words. They help a lot. Throughout my life I’m afraid, I’ve always looked for the worst case scenario in the hope that I’ll be prepared and perhaps stay ahead of any problem. Futile I know. I should stay in the present, take each day as it comes and make the most of it. It’s a terrible affliction to have and so difficult for me to come to terms with. Fortunately my wife is a positive person and is a huge help in keeping me on track. We’re soon to go on a holiday to HK and New Zealand. My ‘what if’ mind has been working overtime, but I’m not going to let it get the better of me. My consultant is aware of my issues and has been very encouraging in telling me that I must go and there are no medical reasons that I shouldn’t. 
Thanks again for your understanding and encouragement. 
All the very best. 

Colin. 

Back from hospital 

stage 4 tonsil and base of tongue

no planning as another scan needed for spread to shoulder blade

bricking it

heartbroken

Hi Colin. Have a wonderful holiday. It is a big step going on holiday good on you. I went on a trip to Tasmania last year with my husband(I live in Australia). I was a bit like you trying to make sure it would all go smoothly as I have issues in the food department as I am on a modified diet. I had a great time and there were no issues at all. We had self catering accommodation and that worked like a charm. I know you will have a great time. Be proud of yourself for taking up the challenge and moving on with your life.

Lyn

Forgot to ask

whilst having treatment and afterwards were you able to get out and about 

Hi Lyn, well… oodles of encouragement there and just what I need. I’m sure you came back from your holiday all charged up with positivity and looking forward to getting on with things.

It’s a dull overcast day here with temperatures hovering around 0C. Difficult to find positivity in such an atmosphere. However it will be between 20 and 30C where we are going so that should make things a lot better. Also been reading some of the other posts and I think that I have little to complain about. My cancer originated in the skin, so no internal neck intervention required, no tube feeding, no significant swallowing problems. Banish the ‘what if’ mentality and look ahead with positivity. 

Thank you again for your upbeat words and your pats on the back. 
Colin

I’m struggling today

not even started yet

im totally alone and depressed