I feel bad posting this as I am not a cancer sufferer but we are affected by the long term effects of the treatment on my partner who had head and neck cancer.
The treatment chemo and radio was pretty intense and many years on now ,while cancer free his side effects have constantly evolved. He lost so much weight , has very little energy and mini-stroke and due to nerve damage can no longer eat or drink( swallowing no longer works and aspiration pneumonia is constantly over shadowing us). He has a permanent peg fitted. We both still work full time ,support our adult kids and wider families as much as we can. The issue for me is that most of the time we muddle along, but planning for the future , travelling , communicating about support needs (that are not fixed and creep up on us) is super hard. We also have this vague sense of worry because my partner doesnt have a clear health plan and everything just feels reactive. He also has a few different health care professionals involved but its hard to know who to talk about what he needs in the round. I wonder if anyone else feels similar to this ?
Hi OAR
I don’t feel that way as my long term effects after six years are minor but I wanted to welcome you here.
It might be worth contacting the hospital where your partner was treated to see if there is a late effects clinic you can both go to. I know there is an excellent and pioneering one in Nottingham and there are others dotted about the country.
You could give the MacMillan support line a ring too. They might have a suggestion
There is a cancer charity called The Swallows that is very active in support. Have a look at their website. They run monthly support meetings.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
