Swallowing problems

I.m having chemeoradiotherapy on my oesphagus and into the third week of a four week course i.m having problems swallowing food and drink i.m eating bland foods and drinking through a straw but still struggling has anyone got any tips to make things easier thanks in advance

[MEW53]

Molly6460,

I have severe swallowing problems and I have to watch what I eat.

I understand what it’s like to have land food. I have to take care as I can have really bad choking issues.

I was on a very soft diet for a long time then I managed to incorporate more things as time has gone by. I cut food up really small and make soups and then try and liquidise/ sieve the veg to make it easier to digest. Haddock is easy for me to eat, battered by my local fish and chip shop and good for protein. My range of food is very limited but I have moved on from a liquid diet.

I avoid sweetcorn, rice, peas, tomatoes and anything small that can get caught in the oesophagus and I sit forward when I eat and take a long time eating cos of my swallowing issues. It’s a case of trying something and seeing how you get on. I used strawers in the early days cos I couldn’t use a cup or glass very easily, but I drink quite slowly. I started with really bad swallowing issues about 4 years ago and I do miss the occasional steak but some meats are too fibrous to chew and swallow. I tend to live on tuna fish, haddock and chicken breast but better than the liquid diet I was on.

I don’t know if this helps.

[Hidden]

Molly I remember that so well! It really hits at this stage of the treatment and it’s miserable! I could really only manage liquids. I was lucky to be supported by a dietician. This is what I did. I had two bottles of fresubin from the dietician. Each bottle contains 20 grams of protein and half your daily vitamins and 400 calories. They drinks are quite small not particularly nice but really keep you healthy. Then I could only eat fresh custard and homemade soup. Like you it was all over Christmas when everyone else is enjoying themselves! There is also a medicine that you can have to numb the area before you eat and that helped. But the great thing is about ten days after the treatment it began to get better and I was able to eat very well before the surgery. So good luck get medical help and keep hanging on in there it’s possibly the worst part but hopefully not for too long

Suzyx

[Hidden in reply to Hidden]

Thanks for replying the doctor has given me some medication to hopefully improve things i.m finding just drinking water painful at the moment and like you say watching everyone else eating and drinking over Christmas is hard did things improve when radiotherapy had finished i.ve still got 12 treatments to go 😥

[Hidden in reply to Hidden]

Yes things really started to improve about 10 days after radiotherapy and by the time of the surgery about nine weeks after the chemo radiation finished I could eat pretty well anything. It just got better and better! I was able to travel from Cornwall to Milton Keynes and London about six weeks after it finished and I could eat most things. You are in the worst bit now and it improves. Every few days I could eat a bit more variety and I started to feel better. The stage you’re at now is the pits! Hang on in there it’s not for ever!

[Hidden in reply to Hidden]

Thanks for your reassuring reply at least if I know these problems are normal it makes it a bit easier to cope with so glad your op went ok and you sound like your doing really well which makes me feel better because I know a lot of people on here have problems x

[Paulbrighton]

Hi Molly. I had exactly the same problem when I had chemo radiation. It hit me on week three too. I am now ten weeks post treatment and only now is swallowing getting easier. Here are my coping strategies:

I took a tablespoon of aloe Vera juice (Holland and Barrett, reduces inflammation) followed by a tablespoon of Sucralfate (provided by the hospital, for sore oesophagus) about half an hour before eating. I start the day with two scoops of whey protein powder in water or almond milk. It’s about 300 calories and 50g protein. I use a low volume of water so I can drink it all and prefer Metapure as it has nothing else in it.

I ate scrambled eggs, baked beans, pot noodle or oily fried pad Thai noodles (Uber eats) or pasta with sauce or baked potato with cheese although I really didn’t want to eat and found it very difficult, I felt so awful I couldn’t eat much. I ate mayonnaise with almost everything as it’s a good lubricant. I had two Fortisips a day, which give about 300 calories each plus a tiny amount of protein etc. And I eat at least one ice cream a day such as a Magnum, which is about 270 calories. During chemo and radio and for weeks afterwards it is important to drink as much water as possible, but that’s difficult for us isn’t it. I would drink 500ml of water as soon as I woke up, which took me at least an hour, 6 gulps at a time. Then at 1230 I would drink more and also 430pm. This way I would get water in when I had digested food but at least Half an hour before my next food or snacking. I never managed my goal which was two litres a day (which was easy before surgery) but I found that the more I drank, the better I felt and to some extent I still feel the same. Incidentally I drank lucozade sport or Oasis or Drench whenever I could because they also have about 100 calories in. If not then those I liked cordials, not many calories but easier when on chemo and I felt sick or had a bad taste.

As I mentioned earlier the swallowing took me a couple of months to improve but it does get better eventually. I hope that yours improves quickly and that you find some of these tips useful.

[Hidden]

And hey Molly Just the fact we can all share our experiences with you is so amazing really! I thought I’d never eat solid food again I couldn’t manage poached eggs or anything! But magnums and the fool desserts are great for calories if needed!

[Zantri]

Molly,

I had similar issues and eventually could not eat so was hospitalised. The radiotherapy was the issue and so I was prescribed sulphracate, a tablet which as soon as it hits liquid dissolved and coats the surface. So I had to swallow it quickly, very quickly. I was also prescribed another medicine to coat an dorotect my throat. Ask your doctor explain what is Halle img and they can help.

Really hope this earl quickly, the radiotherapy is horrendous but it gets better. I am 2 years post treatment.

Z

Xx

[Tommy12]

Hi molly

I recently finished my chemo/radio and i was the same. It lasted for 2 weeks after. But then the soreness went and i felt really good. It is a little sore now but i have my surgery next week and no doubt that will bring other things!

[Hidden in reply to Tommy12]

Thanks for getting back to me I hope your surgery goes well will you let me know how things go I know it's the next step for me in a few weeks time take care x

[Ellapup in reply to Tommy12]

Good luck Tommy , will be saying some prayers for you to keep your strength up. Rest ,eat well and get some exercise for your heart . This operation is not easy and will change the way you do things but I believe at the moment it is the best choice to keep you alive.

[Dogday20]

I had chemoradiotherapy for 5weeks, by week 4 l nearly gave up. It had become so difficult to swallow any thing. Food was too wet, too dry, too spicey too fruity too acidic too anything. I thought l was going to end up being an inpatient but they started me on oromorph and l was then able to eat a very bland diet. Once the treatment was over it took about two weeks to ‘ peak’ before it started to ease. I had my surgery on April 28th, l am now just beginning to feel my normal self though still get very tired. If l have anything planned for the evening l try and have a nap in the afternoon.

I was prescribed fortisip drinks but could only manage one a day if that, then we bought a cheap ice cream maker and lots of little pots. Three bottles of fortis makes about 5/6 little pots of ‘ice cream’ . I have these as between meal snacks,so maybe 3 or 4 a day . I do a batch every couple of days even now. I have a drawer full in a variety of flavours in the freezer. As with any homemade frozen puds just remember to take one out about ten minutes before eating.

Hope all goes well for you Molly and anyone else going through this at the moment.

[deedle]

I just did not feel hungry when having the chemoradiotherapy and was given fortisips drinks and ate soft boiled eggs and buttered bread for breakfast trying to live a normal routine, lost about a stone in weight and after the treatment my appitite returned slowly plus my weight, though by then I did not have problems swallowing, I just took each day as it came always thinking that tomorrow was another step forward and each day feeling slightly better. I had my tumour removed with EMS and turned down an Ivan Lewis op trusting that the chemoradiotherapy would mop up any stray cells. However 3 years later it has returned, and now seeing the consultants again trying to decide which treatment to have ,as an active 76 year old I feel that I do not want to loose a single day with my family and friends.

Good Luck with your treatment and always think no matter how you feel at this moment in time that you will come out of it looking forward and enjoying living … Paul

[Hidden]

Thanks for your reply the doctor gave me some medicine to help with swallowing which has helped and this morning i.ve managed a slice of bread which is good because i.m just living on liquids at the moment so hoping it continues to improve. So sorry to hear things aren't going so well for you do you think you will now have the operation I know it's a frightening op to go through and I will be having it done in a few weeks time hope things go ok for you take care .

[grandylynda]

I had medication to help me swallow during treatment.. If you havnt, I should ask

[Ellapup]

I had my ivor Lewis the end of August and into 4 months now and starting to see the light . The chemo and radiation I think still give me days when I am just plain tired and I take it easy. I had alot if trouble during that time trying to eat and staying hydrated as my esophagus was 80 to 90 % blocked. Drinking water was not good but an aloe drink I was getting would be fine or a shake. I would take baby bites and sit there for how ever long it would take to eat. I would also smoke weed to stimulate the appetite. You need to stay as strong as you can now and come through this with some weight on . I had 6 wks of chemo and radiation and found that it takes awhile after the end treatment to get to feeling better. During the so called rest period you need to eat well, rest and exercise to get ready for the next phase. It is not easy but it like I said 4 mos. out and I am riding my bike again and enjoying family and life which I was about lose. Hang tough because you will have to be , stay strong and positive as much as possible. Oh ya bread would always give me a tough time. I wish you the best and will say a prayer for you

[Hidden in reply to Ellapup]

Glad to hear your doing ok after your op it sounds really tough and I know i.ll be going through it soon how long were you in hospital for and what's your diet like now I can't eat bread at all at the moment and like you it hurts swallowing water i.m drinking soups through a straw which helps but my diet is terrible at the moment can you eat whatever you like now or are you still restricted to certain foods x

[Hammiboy]

Hi,I had the same problem and have now been fitted with an ng tube I have to connect myself to a pump for feeding which lasts 10 hours ,i was able to eat soft foods or blended foods but can now only manage tinned soup .I am starting chemo next week and hopefully it will shrink the tumor enough to get the tube out and I will be able to eat some foods as its driving me crazy not being able to eat

[Hidden in reply to Hammiboy]

I ve just finished my chemeoradiotherapy and the doctor says the swallowing problems are due to inflammation and should settle down soon . I know it's awful not being able to eat properly I hope things improve for you soon are you having radiotherapy as well . I should be getting a date for my op soon which is the next scary step but I know it has to be done . Do you know when yours is ?

[Hammiboy in reply to Hidden]

I start chemo in the next 2 weeks..I am getting 3 cycles of chemo then they say I will be scanned to see if the tumour has shrunk any before deciding when I will have surgery to remove part of my esophagus ..it just seems like forever since I was diagnosed and up to now no treatment has been done to try and kill it ...I hope your op goes well and you are back to normal as soon as possible