Chris,

It sounds like you're in the worst part of the treatment cycle and not getting the aftercare you are entitled to. I'm not familiar with your treatment or condition but if the side effects are getting worse, it must be time to get some help to alleviate those symptoms.

You should have been offered follow up services from both the District/Community Nursing service and the MacMillan service. If you are not already receiving services from them, contact your GP (or get someone else to do it if you don't feel up to it) at the first possible opportunity and tell him or her that you need an emergency referral now - no if, no buts. Tell them exactly how you are feeling and that your side effects are becoming unbearable. Be honest about how much in despair you feel and how you feel badly let down by the system and that as your care coordinator you are asking them to put you in touch with the right people.

Sorry if this sounds stroppy, but I feel incensed on your behalf that you have been so badly let down. It would also be worth formally writing to Guys about your terrible patient experience. Getting the surgical interventions right is only part of the job they are paid to do. They also need to look after your welfare and ensure you are receiving the practical and psychological after care you need. Something seems to have gone badly wrong and if you can help stop someone from else being similarly treated you will have done Guys and their future patients a service.

Good luck
Dave

Hello Simon.  Chris here. thanks for your response.  Here we go again - I had typed a fair bit of text and it disappeared so I am starting again.  Can I ask did you have a nasogastric tube or PEG.  I have the NG tube and cant have PEG due to other preexisting medical problems and it seems that people who havee had PEG dont lose their swallowing function altogether as I have.  The mucus is unbeaable but more than that it affects my nasal passages blocking my nose so when mucus is in back of throat I lterally can get no air and feel like I am drowning and have a panic attack which does me no good at all.  Consequently I get no more that about half an hour per stretch sleep and manage about three or four hours altogether per day.  I am tired and exhausted.  They tell me to nebulise but this blocks my nose even more so I am reluctanct because it makes matters worse. You are quite a way into your recovery and if I remember rightly they dont tell you that your eating patterns (should you make it that far) cahnge.  Why is it you cannot eat these things that were previously ok for you?  Is it swallowing.  Is it digestion. Is it taste. And do you just find out by trial and error.  Like yourself I have never been a big eater and border on skinny and struggle to maintain a good weight but I did enjoy my food when I ate and I know what I like.  This is a fundamental pleasure of the human being that has been eroded.  I am glad you have a positive outlook and of course that you are through the worse and a survivior, but I am sad to say had I been infull possession of the facts of what was to come I would never have started treatment and would have taken my chances.  Easy for me to say because I do not have children or family but do have a small circle of fantastic supportive friends and one in particular my life long friend (since we were  5 yrs old) has held my hand as much as possible throughout thisordeal.  It is for her and our friendship and her kids (her kids are my kids) that I decided to go through with treatment and she is the reason that in my darkest hours I havent taken that extra step to finish it altogether.  My fear is that I might because of the overwhelming fear that I will never get better and that I will never be able to sit with my friens and have a meal and a chat.  I am  disappointed with my oncology team and consultant.  I am due to see them once more on new years eve and then they have fobbved me off to a local head and neck team which is a Hospice.  I tell them that my swallow function is not returnong despite me religously doing the excersises. (which was my "care plan" - one sheet of paper showing swallowing excersises.  In all, I will keep in touch for support and guidance but my dark moments are becoming more and more and lasting lomger and longer.  I fear i am becoming a horrible person and have lost all sense of "me" - who I am now.  Perhaps you could answer some of my questions and maybe know of someone during your internet travels who has/had the NG tube and not PEG.  Once again thanks.  I would not be atall surprised if people dont want to respond to me - I am the perfect downer for the merry season and will probably bring people down with me. But I am just being honest with how I feel.  Chris

Hi Chris,

In answer to your questions....

I had a PEG tube. All in all it was fitted for around 6 months. I lost my swallow completely for around 2 months (may have been slightly less). I slowly found that things started to improve around 8 weeks after treatment and I moved onto taking the PEG food via mouth and not through the tube, then I progressed to various soft everyday foods, some suggested by the hospital, some by this site and some by my own trial and error.

Foods I found worked for me included at various stages.......
Tins of rice pudding
Tins of macaroni cheese
Scrambled egg
Runny porridge
Soup (as long as the contents didn't include black pepper)
Ice cream (microwaved for a few seconds)
Batchelor's box noodles / pasta
Some Pot Noodles
Batchelor's Super Noodles
Spaghetti hoops
Mashed potato (very creamy / runny)
Well done soft veg
Cheese sauce with everything (except the ice cream)!

My diet has very slowly improved over the last year. My problems with eating nowadays are twofold....
1. Reduced saliva - it has very slowly improved over the last year but still very different to pre-treatment
2. Sore and sensitive throat / mouth to hot or spicy food
Nowadays my eating issues are not huge problems. I, like many others, have come to live with them. Once I find what works I tend to stick with it and then just experiment occasionally.

Keep plugging away at the doctors and nurses, Chris. Have you got a stroppy friend you could take with you to the New Years Eve appointment? Also, I used to find that writing things down to go through during the consultations helped ensure that I did not forget to cover anything.

Good luck Chris and keep us posted.

Simon XX

Chri here., Thank you for your kind response.  I have been reading some other helpful replies which has given me a little glimmer of hope.  I dont think I have received the best of aftercare from Guys Hospital and leave their care to a local head and neck team at Hrris Hospice. My last appointment with Guiys (until my PET scan I guess) will be 31st December 20014.  When I make comments and tell them how badly I feel I am doing, my firend has also involved herself with my care and spokent to them beacuse I have no voise - they simply say follow the care plan.  My care plan consisted off one sheet of paper showinf jaw and swallowing excersises.  Some care plan.  My friend is hoping to be able to come with me on the 31st and voice my concerns for me.  I will keep you posted.  Thanks again for respondind. It must be difficult to reply to someone who is currently on such a downer.  The fact that people are still suffering after a year hasnt given me much hope and the fact that eating food that one once enjoyed will never be the same again is a horrible thought.  I feel that I was never fully made aware of all these side effects and certainly none of the longer term ones or even the lifetime ones.  I feel like a spider caught in a web at the moment.  My life has no pleasure only pain and I done want to feel like this but cant help it.  I will keep plugging away and put up with it as that is all I can do.  I will post again and thankyou so much for your reply.  Chris.

Hi Chris,

I hope I didn't leave you with the impression that you would never enjoy food again or that there was nothing to look forward to. On the contrary, I really enjoy eating and have done for a long time now - it's just that I eat some different things nowadays out of necessity. I have discovered new food to enjoy. Every cloud has  a silver lining!

Take care.

Simon xx

Hi Chris - like Simon, I didn't mean to give the impression that you will never enjoy food again.  I have also had to adjust the way I eat.  There are certain things I used to love (chocolate for example) which I never eat now because it just doesn't taste right.  I also avoid very dry foods like bread because I find it hard to swallow with reduced saliva.  I eat less meat than before and a lot more vegetables.  So although things are different to how they used to be (I was definitely an over-eater before, yo-yo dieting my whole life) I now find I am able to eat fairly normally again - just smaller portions and washed down with copious quantities of milk.  For a while I completely avoided eating out, but on the run up to Christmas I had a couple of lovely meals out with workmates by chosing things I knew would slip down easily.  So please don't get too despondent about that (easier said than done, I know).  I am living a normal life again and have just had to make a few adjustments. I did get a bit emotional on Christmas day when it suddenly hit me that I was enjoying my food and drink and thinking back to last year when I had just started treatment and constantly feeling or being sick.   I do agree with the others, it sounds like you could use a lot more help and support as far as aftercare goes - your description of the care plan for swallowing exercises sounds totally inadequate to me.  Unlike you, I didn't completely lose my ability to swallow while I was PEG-fed (just had to keep taking sips of water and milk to keep the muscles working) but I was reassured that if I did develop problems I would be referred for specialist help.  So, hopefully your friend will be able to help push for proper aftercare at your appointment on the 31st.  If they don't get the ball moving for you, then you should certainly follow up Simon and Dave's suggestions to go to your GP or local A&E.  It might also be worth asking the moderators on this site to see what advice they can offer?  They might also be able to direct you to a thread where you can chat to someone whose experience has been closer to your own (i.e. NG tube rather than PEG and loss of swallowing/speech). I'm sure you would get enormous help by speaking to someone who has been or is going through the same as yourself.  There's also a link 'ask the nurses' on the menu to the left.  You deserve to have proper support after everything else you've been through and I sincerely hope that you find it.  Another thought - do you have a Maggie's Centre (or similar) nearby?  I found them a huge help offering alternative therapies (massages, aromatherapy etc) which gave me a real lift/treat when I was unable to eat and generally feeling down.  I will check in from time to time to see how things are going for you.  I can't stress enough what a lifeline this website was to me when I went through the worst times (last week of treatment and about 4-6 weeks after that).  Everyone is different, but I am sure you will start to make progress before long, especially with the right care and support.  Good luck on Wednesday and as Dave said 'get stroppy' or ask your friend to get stroppy for you.  Irene x