Saying hello

Hi Spey6,

Sorry that you have found your way here. Would be helpful for you, and useful to others in being able to provide advice and support, if you shared something of your story. I’m presuming that your partner has been diagnosed with oesophageal cancer? 

Yes.  My partner was diagnosed with oesophageal cancer two years ago.  He has Barrett’s Oesophagus and I’m told that this carries the risk of cancer.  He could only be offered radiotherapy.  NG fed for about a year.  He has pharyngeal and oesophageal pouches, which complicate swallowing.  9 weeks ago, his voice became hoarse.  ENT were surprised to find that one vocal cord has stopped moving and suspect that cancer may have spread to that location.  He chokes and coughs with everything he tries to swallow.  He has been losing weight steadily in the past months.  Neck and full body CT will happen next week. We’ve been through it all many times, but this time, I see his fight flagging.  I’m finding this hard of course.  

Mine started with vocal fold paralysis because of the placement of the tumour. I've had a pathetic cartoon voice since January 2024 and swallow problems since about March. My specialist cancer nurse gave me some juices and shakes. The brand name is Ensure+. These are high in calories with the intention to add weight but they are complementary, not a whole diet.

He also advised me to eat full fat dairy. I have been using lactose-free, since the cancer and treatment can cause enough inflammation without the help of lactose! Full fat, lactose-free milk, cheese, cream cheese, cream, yoghurt. I expect you're familiar with levels 4-5 and 6 diets for dysphagia? With level 4 being pureed, 5 minced and 6 small bite size pieces. I’ve found a few online places who deliver frozen meals in these formats. I find that potatoes in any form are a no-no as they cause instant reflux. White fish works for me but not chicken as it’s too fibrous. I’ve bought a pureed steak dinner which looks like it’s made from jelly and I haven’t plucked up the courage to eat it yet! Maybe this evening. Simple carbs like Rice Krispies and Cornflakes work, they have to be soggy, so not complex carbs like porridge. Bread has also been a no-no but I’ve found a pureed tuna melt sandwich and will try that soon, too. Milk puddings such as creamed rice, custard, Angel Delight and things like trifle and jelly are good, too. A little bit of dark chocolate was OK’d by the nurse, although I find one or two squares of Bourneville enough otherwise it can inflame the bowel. Try to encourage him to eat things he likes the taste of. Fluids – drinks, soups, anything he likes to eat which can be whizzed in a blender. Acidic fruits should be avoided – orange, apple, etc. But carrot and beetroot and banana are gentler on the innards. Tiny bite size portions, little and often. Spend time together. Be kind to each other. xx

Edit: and someone just recommended this stuff, which is a nutritionally balanced meal replacement in a shake: https://uk.huel.com/

Thank you for sharing this experience and advice.  Despite being more or less abandoned by the dieticians, we have a good idea of what would be best in terms of type and texture.  Over the last 18 months or so, with experimenting and record keeping (!), we have found that what might slip down better today, will cause profuse distress tomorrow.  It’s the randomness of it all that is frustrating for us. With lack of input, appetite wanes and it becomes a vicious circle, doesn’t it.  We have protein powder to add to food and have done the Ensure route too.  Every day is a lottery!  Thanks though, for telling me about your own experience.  That itself, is always helpful.

You're welcome - it's good to chat and share. Agreed - it can be a lottery. I'm sorry to hear you've been more or less abandoned by the dieticians. My cancer specialist nurse has been my first point of help and referred me to the dieticians. My first appointment with them is a video call in January. Can you chivvy them along? See if they can offer more help? Don't struggle on your own.