This is a post I tried to do last night. 'Timed out, trying to reconnect'. Some 8 hrs later and I am reconnected.
As some will know hubby went into hospital last friday for modified radical neck dissection. The Op turned into a more radicl dissection. Hubby still in hospital due to various setbacks after surgery. However today (thursday and his birthday) he has received the most awful news following a Scanned swallow test which has shown that he has lost the ability to swallow safely. He has massive internal swelling, some caused by lymphodema (expected) other unknown origin. The scan showed the swallowing muscles not strong enough to swallow properly. The surgeon has been called to see him and discuss with him why this has developed. (Suspicious me thinks they probably know more than they are saying to him at the moment). Solution is a permanent feeding tube, which for him is one of the worst possible outcomes. I am sad for him tonight.
I know from here that other people have overcome this situation to some extent. Not sure how he will cope once he is home and has to start adjusting to his new 'him'. He hated with a passion the PEG he had fitted last year. At the moment I cannot see how it will pan out longer term. Quality of life has always been important to us both so we shall have to see. The left side of his head also feels numb to him and neck (other than the scar area) and the left side of his tongue is also numb although staff have said that can be improved over time.
Until the beginning of June he was making good progress from his previous op and radio-chemotherapy. He was beginning to get his life back on track.
It is all still raw and we are both still processing it all but it doesn't help that I can't visit him although that may be about to change over this weekend, still waiting to hear about that.
I did manage to get a zoom call with him yesterday, as it was his birthday, and he looked tired understandably but it was lovely to see his face and hear his voice.
Hopefully I will have better news soon.
Stay safe folks
Good evening Brandygirl, i tried replying last night but gave up after two attempts lets hope this one sends ok, great advice from Linda and Hazel. Hazel is right in saying i have had cancer 3 times all involved surgery. Sorry to hear that your husband has had a couple of setbacks, the trouble is they can do all the test and scans etc but they never know what they will find until they start surgery and will do what is necessary to remove any signs of the cancer/tumour. I lost the ability to swallow properly or safely after my second operation as i was making good progress after my first operation so very much like your husband. I think its to early to say that he will not be able to swallow for definite as he is still in the early stages of recovery and hopefully once everything has settled down and healed the consultant will get a clearer picture of what is happening. I rely on my PEG for most of my feeding but can drink thin liquids at a much slower rate which im quite happy about rather than no swallow ,also the tongue plays a massive part in swallowing as well as eating and talking. As Linda mentioned your husband will have a speech and language therapist ( SLT ) who will give him excersise to help build up the muscles in the swallowing area and tongue if needed. I would say try to look as if there are positives still ahead but as always there are no guarantees,i never gave up neither did my team despite it returning a third time, im very happy with my way of life it just takes time to adapt and accept sometimes. Great to hear you managed to see and speak to him via video call on his birthday , Wishing you and your husband all the best, stay positive, take care .
Chris x
Its sometimes not easy but its worth it !
