Severe long term side effects from head and neck radiation

Hello @mysister Welcome to Connect and the Head and Neck cancer group.
It seems you are in a difficult situation, getting help for your sister from miles away. Basically we here are patients, former or current, learning and helping each other by experience our medical teams do not possess. We may have ideas for specific issues. But let us get some additional information.
Is your sister a citizen of Germany on their healthcare? Or is she a foreign national or military?
Can she get to a clinic or hospital well versed in head and neck cancers, as this may be a return of cancer?
It is also not uncommon to have pain/ nerve issues from radiation years later, which is often dealt with by physical therapy, although this seems beyond that a bit.
Perhaps someone here will be able to help you with specifics. Don’t hesitate to ask. Starting your own discussion was an excellent way to get the ball rolling.

Hello @mysister
I’m in my 9th year post treatments as well.
Like your sister I too have many after effects of the chemotherapy and radiation.
Your sister needs to get a social life going for sure, I probably wouldn’t be alive if I didn’t have family and friends.
Does she have family members living with her or is she alone?
Does she have a primary care physician?
She needs to see a physician regularly and she needs to be open with her provider.
Maybe she has slipped into a depression and doesn’t know where to turn and that’s what is making her disability worse?
I think while talking to her by whatever means you’re using, you need to pry into her personal feelings and see if there’s any underlying issues and coach her into seeking therapy if needed.

Wishing the best for your situation,
Jody

As Jody said, most of us are here because of side effects, the blessings of surviving cancer, and are looking for answers. I would suggest you direct your sister here to know she is not alone. I'm 20 years out, and I am still dealing with things that I now take for granted. They are inconvenient for sure, but I have learned to live with most of it. A good support network is important as the medical staff can only do so much. Your sister survived a deadly disease, but it is also important to learn how to go on living. That can be a challenge if you're always looking over your shoulder, with constant reminders plaguing you. I hope she gets the help she needs, and thank you for being so supportive.