advice

Hi. Sorry to see you are floundering. Do you get a nasoendoscopy at your ent check ups? 
I would make a list of all your symptoms and a diary of how and when they occur. Take that to your GP. If you are meeting resistance then get your CNS to write to the practice asking that they take note of what’s happening 

A request from a hospital often does the trick 

ichi said:

i have had no other after care since finishing the treatment and 1 MRI at the end of 2024, is this normal?

Yes largely. Apart from your 3 monthly reviews which will likely soon be extended to 4 you are left in the charge of your GP. 

I have been for a 6 monthly review today, it took 5 minutes, the oncology consultant who looks after me is very good, any issues are addressed via my GP who is now in charge of my aftercare, side effects can appear months or years after treatment finishes... your GP should be well aware of this, you should maybe push your GP a little bit more...we are certainly not making up symptoms.

Hi Ichi. Sorry to hear that you are not getting the support that you need. It must be really frustrating not being listened to. I had 3 monthly reviews with my surgeon for 2 years and then he extended them out to 6 monthly reviews for up to 5 years. I am lucky that my surgeon is very attentive and gives me good suggestions when I am struggling with side effects. He does say that I need to go back to my G.P. to discuss some of the issues which I have done. My G.P. has then helped me or referred me on to someone who can. I have found that I have to be pro active and be very clear about what I am asking my G.P. to help me with although she is great but has limited experience with H&N cancers.I have seen the same G.P. for some years now and she is very familiar with my case and is very supportive. Could you cultivate a relationship with the same G.P. as this does help. If you can find one that is supportive it makes all the difference. 

Sending you my best wishes. You will get some great support from this forum from people who have experienced something similar and can point you in the right direction with side effects. They have actual experience which is not theoretical which is what our G.P.'s have. Theoretical experience is great but it does not help the G.P. really understand what is going on. 

Lyn