Larynx cancer

Affected by larynx (voicebox) cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Nervous waiting

seeker1
Posted by

Oh please ask as much as you like although my blog does mention some of what you point out. Yes I could have as many visitors as I liked and I had very many since I am quite well known and dont live far from the hospital. I was in intensive care as I mentioned in my blog but it is supposed to be a one to one nurse. But she was never available, either on the computer or at break or talking to her friends. I was much better off in the ward. And as I wrote she wont hold your hand. There was always a shortage of chairs, for me. I still cant speak after two years and dont ever expect to speak again but I can type and I manage and that is the least of my problems. There are ways of speaking but I havent bothered. You are given a peg and that is the place where it hurts after the operation, and can take some time to get over it. Especially when you cough or when they use suction. They overdo the suction and also the nebuliser. I manage without a nebuliser. They sometimes leave it in much too long. But cleaning the stoma isnt easy. For some reason the suction machine which you have to pay yourself for is not as powerful as the hospital one and doesnt work well. You are given a button to press for a pain reliever this also didnt work too well but i pressed my stomach at the place where it hurted and that helped. They gave me a swallowing test after one week which I failed but passed the next week. Then i could start using my mouth again. Remember if you also have radio they will take your teeth out and if you want them back in you have to pay for that. The radio is what spoils your mouth not the surgery. It is difficult to get discharged from hospital, they make sure first of all that you can use the peg and the syringe and that you can clean the stoma with a type of blunt scissors they give you. And then they say you are not well enough, also you have to buy a nebuliser which isnt too dear and a suction machine which is. Otherwise they wont discharge you. You can discharge yourself but they will say they wont take you back if necessary, dont worry they will. Remember you will have hallucinations terrible ones worse than any dream you have ever had, and the nurse if she is there ought to wake you up. I imagine it is like taking drugs but much more severe. This can take longer than two weeks to stop. Before the operation date they will give you a two week stay in hospital for tests and biopsy. In my case it ruined my water and my bowels as did the operation. They were very reluctant to put a catheter in until they checked that my water was at bursting point. As I mentioned in my blog for the bowels they ought to use colonic irrigation like princess diana did. They do use it in an NHS hospital like St Marks but they wont use it elsewhere. I can tell you that this hurts most after the operation. You eat from the peg but cant get it out. The enema they give you keeps turning over inside but nothing comes out. You can hardly move just your hands and feet. Well if there is anything else dont hesitate I will reply. 

juniperbreezed
Posted by

So sorry to hear this. I too have recently gone through this with my husband. He had his surgery and opted to have his larynx removed and then radiation treatments. He is now starting his radiation in two weeks. It is a big lifestyle change but we have adapted better than we thought we would! One day at a time as they say! It's a waiting game and patience is something that I had learned very well! Good luck to you both! You will be fine

seeker1
Posted by

Please read as much as you can about radiation. It has ruined my life and I dont think it was necessary. At least I believe it was overdosed. I have no end of complication and endoscopies and blood transfusion to cure them. Maybe I am an exception, but one cant be sure that I am the only one. 

Nanniedragon
Posted by

My husband has just completed thirty sessions of radio therapy and I was wondering how long ago you had you treatment and what side affects you are still having?

walkkt
Posted by

Hi, my hubby finished 33 sessions end of March. 

It took about 3 weeks post sessions before he started to recover. 

Fast forward to now and he’s doing well with just a few symptoms, dry mouth, coughing... 

take one day at a time and make sure he gets lunch to of rest. X