in June 2023 I was operated on for squamous cell cancer below my left ear. Surgery was very radical involving removal of a significant part of my neck tissues, nodes, glands etc and the corresponding glands/nodes in my left chest/arm. My chest muscle was transplanted to replace the tissue removed from my neck. I completed 6 weeks of radiotherapy in September 2023. At first everything was very manageable and I was looking forward to getting some normality back in my life. However, as time goes on the scar tissue and the fibrosis resulting from the intense radiotherapy have become very challenging. I’m able to eat well with some restriction to my chewing ability. Head and neck movement is the primary issue; having to pull against stiff tissue with each head movement and concern with how much this will increase over time. I do the exercises and rub a cream into the area affected.
Would be great to hear from anyone going through similar experiences.
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
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
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
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
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
Sophie66
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