Lynne, in my case they did some swallowing tests, which consisted of me sitting in a fluourscope-type x-ray machine while swallowing various liquids and solids. It was quite amazing when they showed me the video afterward - could actually see all the structures in my neck and throat as the stuff went down.

That of course was just diagnostic. Based on that it was determined that the problem wasn't too severe so all I had to do was exercises - various sorts of tongue things, words to speak. All designed to get things moving again properly. After not too long the problem resolved itself, although I also had concurrent problems lower down in the esophogus, including a web that had grown across it. I gather that having throat dilations isn't all that uncommon for people who've had rads to that area, and I've had perhaps 6 or 8 of them. Though none for a year now so maybe that's history.

And please don't ever feel bad about moaning! Go ahead and moan. As I said, I consider what I went through barely a scratch compared to some of the incredibly brave and resilient people who post here. I always use the word hero to describe them, and I am in awe.

And as Kathy says, don't be too bothered if the scans light up. My docs waited 6 months before scanning me.

Oh and I'd heard about the magic mouthwash but only after my treatment. People tell me it helps. I only had viscous lidocaine and various sorts of saliva replacement things - Caphosol comes to mind although as I recall it was very expensive and maybe not available where you are (?). I dunno if it helped or not. Swishing with baking soda/water several times a day is always a good idea.

Thanks for the info Kathy and David. Interesting to hear what you say about possible false negatives from what may be a scan too soon. Ummm, don't my team up here know about this??
The info on magic mouthwash is useful but what's it's generic name please anyone?? It sounds like a cousin of magic mushrooms!! I've got a replacement saliva spray , not sure what it's called, I'm just ready to crawl into bed, so will investigate another day. However I've hardly used it as I've not really been eating since I had it..time will tell if it's any good for me but it's certainly very useful to get names of other meds that people have found helpful to ask about. I will try the baking soda meanwhile.
Can anyone tell me what the difference is between a quick reply and a reply? Not sure if this will post in the same way..I'm not a user of forums so am having to learn all this as I go along here.
I'm giving this site web address to another lady over on the west coast whose oesophagus has closed over, she texted me today after a long gap as she's been having various ops to try and get a tube in to allow future stretching but the op's been unsucessful, so she's fairly despondant. I hope she'll have a look see - I told her how friendly and helpful and balanced this site is. I know myself I've felt so alone and cut off and I think she's in a worse mental state than me, so I do hope she has a look. Personnaly I find I don't want to socalise much as I feel the spitting and coughing is a problem and perhaps if I'm really thinking about it, I feel safe at home in my little cocoon world and routines just at present.
Night all,
Lynne

I used Pink Magic during and right after treatments, and it definitely helped (sorry, but I don't know the generic name). You mentioned oatmeal in an earlier post. I found that foods that were soft but still not too smooth (like oatmeal) could be more difficult to down at times.

Hi Lynne,
The mouthwash Kevin used says...C-Lidocaine/Diphen/Anta. Not sure what the 2nd and third words stand for. I am getting this off the bottle because I have saved it for sore throats!! It's good stuff!
The term is False Positive, not false negative. It means it shows a positive uptake and there really isn't anything bad, just inflammation. The false negative would mean it didn't show anything but there really was something. DON'T want that for sure.
IF the scan comes back with an uptake they will do more research. Maybe another biopsy, maybe an MRI. They have to follow protocol as if it is bad until they know it is not. On this site we try to go with staying calm until the biopsy is back and they say FOR SURE it's bad. NOT an easy thing to do. As I said, we went through it in March and it was terrifying for a couple days.
We have another next Tuesday. Will try to remain a little calmer this time!! TRY is the key word.
I hope the gal you gave the info to signs on. It is such a lonely place to be. I did not find this site until almost the end of Kevin's tx and by then I was a nut case!! I found so much peace here.
Glad you are with us!!
Kathy

Hi Lynne, I'm just down the road from you in Edinburgh. Welcome to the forum. Like you I didn't find it until I was through the worst but it has been a fantastic help since. I am now 9 months out from a very similar Dx and treatment as you and I was having similar experiences as you at about the same stage. My main problem was sores in my mouth and boney bits from where I had teeth out which made my tongue sore when I moved it against them! Plus lack of appetite, taste and swallowing problems.

Sorry to not have reply sooner but I'm only just back from 3 weeks holiday, driving round Europe and camping. So yes things do improve, but it is at snails pace. I am very proud of myself because I managed to keep my weight static while on holiday (without my juicer and magic bullet blender, which have been my best friends in the kitchen over the last 6 months)though I only managed to do this by additional chocolate (only 70% or more cocoa and melted in the mouth with a hot drink) and beer! Going through Belgium was very helpful as they make fantastic beer and chocolate.

But back to the bad times, which are now fading from my memory, to respond to some of your queries.

I didn't find the morphine particularly helpful, as my pain was as a result of eating. The mouthwash that I found helpful was Diflam (Benzydamine hydrochloride)which I got on prescription. Would gargling that get to the sore areas in your throat? Could thrush be causing your pain? I had severe thrush through my treatment which took ages to clear. It could explain why the pain has got worse.

I had a RIG (similar to a PEG) for 5 months which I found very uncomfortable but it did stop me losing too much weight. I was prescribed Fortisip feeds which I started taking by mouth rather than tube at about 3 months. I still need a couple of bottles a day at present to keep my calorie/protein levels up. They are pretty disgusting but that motivates me to getting off them as soon as possible. The first fluids I managed other than tepid water was an infusion of ginger root and honey. My mainstay food to start with then and still is now is porridge, with a chopped banana cooked in it (I read your post re bananas being a problem but cooking them helps a lot), to which I also add: blueberries, creme fraise, honey, ground flaxseed, ground almond, ground hemp seed. you can make as thick or thin which ever is easier by adding milk. Next I moved onto juicing fruit and veg which I still find much kinder on my mouth than bought juices. Melon gives very kind juice (leave the skin on when you juice it to get the nutrients under the skin) as it stings a lot less than other fruits. Nectarine juice is also good. I usually mix 3 fruits. It is well worth getting a good juicer. Juicing means that I know I have got a good range of vitamins and nutrients as I can't manage salads or cooked veg (though well steamed carrots were good quite early on). Adding milk or yoghurt (probiotic) to the juice can help neutralise the acid. I also use a magic bullet blender to blend avocado and banana and make smoothies.

Once my mouth sores improved I had to deal with the very dry mouth (my consultant always comments on how 'very' dry my mouth is so I quess it is worse than some people). I am learning to live with that. I always carry a small water bottle, the type that runners use, with me and some Biotene gel. This has got easier as water no longer tastes disgusting. Now my main problem is that anything more solid than porridge, soup or yoghurts, like bread, gets stuck just about where the tumour was. In fact today I have just been for a videofluoroscopy swallow test, as David described above. I still have to go back to see the video and get the exercises but the speech therapist can see that the muscles around the tumour site are weak and not squeezing the food down well enough. So at least I know I can do something positive to improve this, and David's post above is very encouraging. I also have worried that I caused the problem by not eating and only swallowing water for quite a few weeks, but throughout my checkups the speech therapists where happy with my swallowing. I am sure that my problem is due to radiation damage to the area around my base of tongue.

I had my 'baseline' CT scan at 3 months. This was thankfully all clear. The protocol at the Edinburgh Cancer Centre seems to be that I will not get another scan unless there are indications of problems and the scan will be the baseline to check against. This makes me a bit nervous as the relief of a clear scan is very reassuring. The reasoning for not having routine scans is that they don't want to add to my radiation overload any further if not necessary. I do get 6 weekly checks with the nasal camera.

I hope some of this might be helpful to you. But my main message is that it does get better so don't get too despondent. Please feel free to send me a PM (personal message) I would be happy to chat on the phone if you wanted to chat. Sally

Thanks for your replies Tim, Kathy and Sally. Great to read an digest all the good advice and information. Yes I realised I'd written false negative when I should have put false + as you say Kathy I certainly don't want that. Good luck with the scan on Tuesday, not sure if it's happened or is next Tue. Sally it's great to get your long detailed post (I'm in Inverness) and well done you, going on holiday to eat and drink your way across Belgium!!
I do have Difflam but it only helped in my mouth and didn't help further down.
I've had thrush twice and my oncologist put me on 2 wk course of treatment after hearing of the pain prior to the visual scope and she stated there was no sign of thrush being the culprit.
Your smoothie of advocado and banana made me shudder (tho I used to love advocado, it now sears my throat) and you know what I think of bananas...not sure if I need them enough to try the cooking but thanks for the idea!
My mono diet of ready brek is ongoing. Yesterday was bad in that water was difficult to get down but today I've managed 2 small bowls of ready brek without too much pain. Hurrah.
When I saw the speech therapist she advised me to do some exercises and also gave me some wooden spatula type things to hold my mouth open to help with the jaw pain I've been developing alongside an inability to open my jaw as far as it used to go. It's called trismus I believe. She will see me again in about a month and said she may offer me a 'terrabite', some sort of stretching device I think. I felt a whole lot better after seeing her as she said that as long as I do swallow water every day I will retain my swallow ok. That's been a huge relief.
Thanks again everyone,
Lynne

I think stick with what you find most comfortable but keep trying things periodically to see if there is any improvement. Eventually it will get better. It just seems to take a long time for the healthy mucosal lining to recover. Especially after thrush.

Not wanting to eat was the aspect of recovery that upset me the most. I was quite worried that I would never want to eat again. I dreaded meal times. It felt quite psychological at the time but was based in physical causes. Friends and family would try to help by suggesting things but nothing was right. I always have a reason why I didn't like it so it felt like I was always making excuses! Eating was a chore that had to be attempted, and I worried that I was too dependent on the gastric tube. Then one day I tried some small pieces of marinaded chicken in a tomato sauce and I suddenly realised I was enjoying it. It was such a relief. Unfortunately I haven't been able to recreate the sauce again to quite the same specification! But since then the improvement has been slow but steady. I've only recently started enjoying avocados.

That's great that your Speech therapist is giving you the right support. I also suffer from some trismus, as do a lot of people here. I was annoyed that I was not warned about this so that I could do some stretching during the period I wasn't eating. Of course I hadn't realised there was a problem until the first time I tried eating banana! And that would have been about the same stage as you are at. I haven't been offered the terrabite (I believe they are on prescription here) but tongue depressors are helping. You need to keep doing the stretching regularly.

I know Inverness well, almost had to move there with my job a few years ago which will give you a big clue to who I work for!
Sally