Hi there, I'm currently supporting a very close family member whose been diagnosed with mouth cancer and today found out they'll have to have most of their tongue removed, a feeding tube and breathing tube fitted. I don't want to bombard them with questions and scared to look on google. Can someone answer or help with the below for me?
Will they loose all taste when the tongue is reconstructed from limb muscle?
What will the breathing tube be like- will it connect to the throat? Will they always need this?!
I want to support them as best I can and will be moving in as a carer when they leave hospital. I'm a bit scared though, of getting meds wrong or not getting information 1st hand. Will the hospital team talk to me/ her other carer before she comes out to go over care plan?
I'm really worried what her quality of life will be post op, I can't imagine never tasting food again or breathing for self?!
Thank you
Hi AnnJoy and a very warm welcome to the Macmillan Community but sorry to hear about your close friends diagnosis.
A cancer diagnosis can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type and support challenges will help a lot.
The Community is actually divided into dedicated Cancer Specific Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Head and neck cancer support group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
It will be an emotional time supporting your friend so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions, you may also benefit from joining our dedicated Family and friends and Carers only support groups where you will connect with others navigating the same support challenges.
To connect in with a group click on the “Bold Italic Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can put up your own post by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and provide support from all the family.
Do get back to me if you need further help navigating the community but in the meantime all the very best.
