Update and the next stage

Unknown said:

He still struggles to open his mouth fully due to the skin graft in his cheek I'm praying that the rt wont make that worse. 

It might because there will be a dose to his TM joint but these things can be mitigated. I would get him to insist he gets some exercises going before during and after treatment and ensure he is shown how to do them properly by his speech and language team. 
I did my swallow and jaw exercises religiously even though they hurt. I still do them once a day three years later. I can open my mouth just as well as before I was ill and can swallow most things. It was hard work at first but worth it. I used to be able to whistle but that’s gone 

Hi Bev.

Glad to read your son is doing well after his surgery but sorry he is going through this. Yes 12 hour op is long. It will be normal for your son's mouth opening not to open as wide at this stage given the surgery and length of time it took. When he is ready  and  has made steady progress with his surgery he will be given mouth opening exercises to help him. It will be very important to do these and monitor progress.  I agree with Dani's advice about getting advice on being shown how to do these properly. The earlier he starts doing these (but only when under the medical guidance) the better.

Best wishes 

Nicky

Hi nicky and hazel hes got a video call with speech and language either later this wk or nxt so hopefully some advice and exercises will be given. I will pass on the importance to him of getting started thanks everyone x

That  is good Bev he has a video with the speech and language therapist.  His medical team will let him know when to start exercises and any other things he needs to know or do.  As for now his healing will take priority.

Best wishes

Nicky

Hi Bev, my sons rt was aimed at his cheek.  His cheek and mouth are so swollen that it's making it difficult for him to eat.  Hopefully your son won't need too many sessions, my son had 33, which is rather a lot.  At least there's no cancer left now,  We just have to wait for the surgeon to have space to operate.  My son has been off work since June last year, and just want's to get back, it will only be from home and only a couple of hours a day to start with, but not knowing if or when they will operate again means it's difficult to predict when he can return to work.  Please keep me updated as to how your son gets on.  It's a very difficult time for you and the family.  I certainly know how you feel.  Sending prayers for your son's fully recovery.  

Janet x

Hi Janet it must be so painful for your son his mouth being so swollen and 9 months after treatment have they said why it's still so swollen. Has it affected his voice at all. My son as been and had a talk with the radiographers today about all the possible side effect and what to expect.treatment will be every day Monday  to Friday for 6 weeks Just reading the form its frightened me so much but I know it's the only way to be sure hes cancer free. I really do hope all goes well for your son and he can get back to work and start to feel himself soon. I will definitely keep you updated please let me know how your son gets on. Sending hugs xx bev 

Bev the list of acute and chronic side  effects is long but nobody gets all of them. I got a fair few nasty ones during treatment but nothing that couldn’t be managed. I got away really lightly with long term problems. 

Hi dani I know I must stop thinking of the negatives and only allow the positives in. It's great to hear from ppl that are a couple of years post rt and are doing so well. Dani if you dont mind me asking where was your rt aimed also is there a tooth paste and mouth wash you would recommend x

Hi Bev

i had surgery in December and was told all the cancer had gone. I have started radiotherapy, week 2 of 6 currently. I was given the option to have radiotherapy or not. I was so undecided and found it a difficult decision. The oncologist gave me the facts but didn’t really help with the decision of whether to go ahead or not. I spoke with the Macmillan nurse and she reassured me, she said the mdt meeting where all the specialist get together to discuss cases, had my surgeon and 3 oncologists ( I had my op in a larger specialist hospital) who all suggested offering radiotherapy to mop up any microscopic cancer cells that may be present. I decided to have it because I know if it recurs I will question myself as to why did nt I have it?  Also as any cancer can return, mine was adenoid cystic cancer which, of what I understand, usually always recurs. So radiotherapy for me in my head is to lengthen the time, hopefully before it returns (if it returns). Hope that helps

Elaine 

Hi elaine 

Thankyou for sharing your story I you keep strong and well through your treatment.and you get rid of it once and for all.I believe that was the decision my son came to he didnt want to be looking over his shoulder waiting for it to possibly come back. Please keep me updated on your progress 

Bev