Hi, and I'm so sorry that your wife is suffering so badly.  My husband has stage 4 lung cancer, six rounds of chemo and 20 radiotherapy sessions, that was the end of 2017 and yes it left him with a lot of problems but he's still here and is coming up 73 years old next month.  I agree there is not a lot of after care and you will probably find most of us on the forum feel the same.  You need to write a letter saying you can speak for your wife, just a simple note signed by her, lodge it at the GP and that should go on file.  I basically just used our GP surgery, said he Had incurable cancer and they sent a GP out.  You have to be bossy in this situation but polite don't *** foot around if she needs help demand it!  Try some liquid indigestion medicine, I just went to the chemist and bought it and it covered the throat in a protective layer, my opinion was that others didn't help so I would make my own decisions.  You can get liquid powder drinks with vitamins for sick people, once again the GP will assist.  If she's suffering being in bed then buy a sheepskin fleece to lay on, Amazon do them.  Make Sure you cream the area that has been targeted. Any vaseline cream non scented should help, we did this twice a day and laughed as I said it was like basting an oven ready chicken.  I have kept a daily blog all the way through so if you want a read of that time we went through I'll sort it out.  It's very hard being a carer, we definitely draw the short straw trying to keep everything going.  So post again if you need to.  Carol 

My wife did go into hospital for a few hours last night. £30 home in a traxi, 5.30. She got checked out. Steriods seemed to help with the swalling problem. For a short while. Still not in great shape today though. She is regretting radiotherapy massively. And looking forward to immunotherapy - with dread. If she is able, of course.. I am mightily disappointed.

Thanks for you kind interest.

Hi I don’t know if this is any help but the after effects of radiotherapy do seem to get better after a couple of weeks. Straight after radiotherapy nothing then swallowing /deafness then a few weeks later improvement. Not helpful just now but on occasions it seems to improve. So perhaps with steroids then with time she will improve. It is gut wrenching seeing someone go through this and the situation seems hopeless and you despair. I truly hope it gets better. I too am watching a loved one suffer and I am just pushing for the doctor to come out if I don’t see any improvement. Not knowing who to turn makes the situation worse. I wish you all the best. 

Are you receiving the DWP payment for having cancer, your McMillan nurse should help with this.  It's a reasonable payment and can be used on anything that you need.  Glad to be of help.  Carol 

I put all my energy into focusing on us as trying to fit in other problems is a waste of energy and quite often one branch of health care has no idea what the other lot has done!  Things should get a little better as time goes on so perseverance and an upbeat attitude does help, you don't have to be all chirpy but try being positive, it sounds like you already are, referring to the black comedy of it all!  So keep us updated and sharing your thoughts definitely helps.  X Carol

My wife had another day of intense pain, after passing the 'swallowing problems' phase. Once again admitted to local Hospital for assessment. Spent 7 hours there. X-Ray, CT scan..No blood clot, and nothing else significant I assume, so sent home with instructions to double pain relief meds. oromorph & Zapain and it worked so far. 2 six hours periods of sleep, and much brighter today. Her voice also has more strength for the first time in a week. One Macmillan nurse did suggest increasing steroids but that didn't happen.  The learning curve continues.

That sounds a little bit better for you both.  It is a learning curve as we haven't dealt with it before.  This forum helps because we can all relate in some way and offer help.  Look after yourself as well as your lovely wife, you're very important in the scheme of things   Carol