It’s all new to me

Hello Debbie 

at the end of April I had surgery to remove a tumour under my tongue and reconstruction of my tongue using tissue from my thigh like you I struggle at times in spite of having supportive family and friends it is not easy but things will improve there are people on here who will offer you advice and support I am not great at navigating this site I wish you well and hope your dark corners get lighter they will

sybil

Thanks for your kindness. As with all things. There are good and bad days. And I am seeing an improvement, but its a long journey.

Debbie

Hi Debbie

personally I had throat cancer so I count myself really lucky as my recovery is so much easier. However, there is an online support group, Swallows, which you may have heard about. It is nationwide and i also do our county one. It’s all on zoom now, one good thing from the pandemic… but anyone with head and neck cancer can dial in, plus family etc. 

in my local group everyone ekse has had tongue cancer so face a lot more than I do, but we chat, keep spirits up, share tips on things that work food wise etc. Even wearing rubber gloves for washing up (my hands were a mess from tube feeding and washing up syringes etc) Taste and texture is the most common that we all seem to experience the same, so again great for tips on everyday food and eating out. 

Tge nationwide one was more talks rather than chat but hopefully this is something that appeals. I have found it so helpful and I’m 2 months post treatment now.

Sending hugs! xx 

Thanks for the information. I know about Changing Faces. But not Swallows. I will look into it.

Debbie

Hi Debbie

sorry you have had to undergo this surgery, not brilliant is it?  However believe me it is very early days for your recovery at this stage.  I had the same surgery mid March last year, but opposite side, right jaw - left fibula.  You will adjust to the changes as the discomfort gets a little easier and the shock of it all lessons.  If I can help in anyway with any concerns please ask.

June

Debbie doodles said:

. But not Swallows.

https://theswallows.org.uk/

It’s run by Chris Curtis ( a HNC survivor) and his wife Sharon. 

Hi Debbie

It is really early days yet, things will improve although it might not feel like it at the moment.Unfortunately you just can't rush things no matter how much you want to. You have gone through a big op and it is only natural that you are feeling a bit down at the moment.

I have had 3 ops for jaw cancer and now only have my lower left jaw left so I do understand how it can change your life. In April I had reconstructive surgery for my top jaw and now have dentures after a year of being jaw and tooth free. It was not a big op like yours as there was a high chance of failure with a bone transplant so the surgeon put 3 implants into each of my cheek bones, attached a framework to it and then attached the dentures to that.

I do understand the difference it makes to you both in eating and in looks. I found it took me quite a while to adjust to the changes but you do get there eventually. I found talking to my surgeon about my concerns when I was really down helped a lot. He suggested a short course of antidepressants but I found just talking about things helped a lot. I  found being on this forum helped as people here really understand what you are going through. Macmillan do counseling sessions so that would definitely be worth following up.

I have had a longer time than you to adjust as my first jaw op was in 2013 then 2019 and 2022. I am now back to doing everything I did before my ops and living a happy life. I have found ways and means around the eating issue and it does not hold me back from getting out and about.

You will get there. Keep the faith.

Best wishes

Lyn

xx