Hello, I’m Elisabeth. I was diagnosed last Xmas with tongue cancer stage 4. Operated on in February, whole of tongue removed and flap from thigh put in. Also stomach peg for feeding. No chemo but 6 weeks of radiotherapy which was brutal, ended in June but five months of bleeding from neck, hospitalised four times due to it. Now at home but really struggling.
I hate the peg but have had swallowing therapy and throat very damaged so unable to swallow Ensures drinks. Able to have small sips of water but nothing else. Will never eat again or drink normally. Speech heavily impaired due to no tongue and radiotherapy damage. Also limited mobility due to muscle damage in thigh, awaiting ultrasound.
Most days I don’t want to go on as feel have no quality of life. I hate the peg, not eating or drinking and not being able to talk properly. Does anyone have any advice please as not sleeping despite Temazepam (3 hours a night) and can’t see anything to look forward to. Had September scan and no cancer present but didn’t feel the relief I expected. Any tips gratefully received. Sorry to be so depressing. My family have been supportive but broke up with partner of 20 years during this so that hasn’t helped. Thank you.
Hi Elizabeth
So sorry to hear how things have gone for you. I have a friend, Laura Marston, who has gone through exactly what you have and has learned to talk and eat again. If you like I can put you in touch with her. She runs the London branch of The Swallows head and neck cancer support group. I can give you her FB link but privately as Macmillan doesn’t allow them in open forum.
I have sent you a friend request. If you reply I can send you the details.
Thanks for reading the blog. Yes I am well I never thought I would be at the beginning. I know it’s not the same for you. You have higher hurdles but somewhere I hope you find what you need hugs xx
