5 years post op

[SamanthaJP]

Hello, just thought I would introduce myself. My partner Wayne was diagnosed with Cancer of the Oesophagus in January 2020 after tumours were found when he had trouble swallowing. He had NHL in 2010 stage 4 and recovered well. This time he had 8 Chemos then the surgery followed by 8 further Chemos. Now 4 years on hes still suffering (thats why I've joined this group). To cut very long story short we had lots of trouble after the surgery with swallowing and they discovered a stricture in the rebuilt Oesophagus. Hes had numerous dilations and is now on his 3rd biodegradable stent. He's lost 12 stone in weight. (He did have it to lose luckily) He is able to eat very small portions sometimes but mainly lives on soup, yoghurt and ice cream and remains in pain. We have had quite a few visits to A&E with dehydration and they kindly put him on a drip. He suffers reflux and his voice has almost gone. Just wondered if anyone else on this journey has any experience of this.. Many thanks for listening, I wish you all luck in this nightmare.. Sam x

[liz_crisp]

Hi i was very lucky and didnt have these problems but a lady i met and became good friends with had throat cancer and swallowing was a nightmare as was keeping her weight up. We made ice lollies oit of slim fast mixed with fortifued milk. (Milk witj added powderd milk) cream and cremefrche. Sometimes adding flavour with strawberry ribena, coffee, maple syrup etc. the coolness helped and they could be sucked so it was just little amounts. But she couldnt stand the drinks from hospital. Custard and a floating island was a favorite made with evaporated or fortified milk. Were also favourites. We went for the most calories in the smallest softest package that tasted nice or had a nice texture. Savoury mouses like cheese sauce with egg whites or egg yolks strred in Eating for us both was a chore rather than a pleasure. Dont know if this helps any it does aound as tho eating has become stressful. Hugs.

[purplekey]

I’m so sorry to hear he’s having such a struggle. I too am 4 years post op. Reflux affects my voice basils too I seem to only reflux fluids so I have to be very careful doing anything that requires bending over. I leave an hour at least after eating or drinking before I clean, garden, wash my hair etc. I sleep with 5 pillows behind me and one under my knees and have Elepants feet under my bed head to prevent reflux in the night. I would have a medicine review with your team to check on his meds for reflux and discuss his pain. I think you need to discuss low food and fluid intake too. Good luck and take care.

[purplekey in reply to purplekey]

Not basil…should read often!

[Smithyrat159]

Hi Samantha, I'm sorry you're both going through this nightmare. My story is similar; lots of problems after surgery and a structure/bend in the new conduit. I was tube fed for nine months in the the hope that it settled itself but unfortunately not. It could be resolved via endoscopic surgery (too far down) so I was offered either to carry on with tube feeding ( they would put a peg in my stomach in stead down the nose) or further surgery to straighten the conduit. I didn't want to spend the rest of my life tube feeding (my choice) so I opted for further surgery. It was successful and I can now eat pretty much anything albeit with the usual challenges that everyone in our community has. BUT, and it is a big but, I'm now in constant chronic post surgical pain which so far I've not been able to find anything to control it. It took a year on the pain management waiting list just to be seen and now I'm waiting for an appointment to try capcaisin patches, having tried medications galore. I'd have stuck to the tube feeding if I'd have known. But we don't know so we keep trying and I still hope for some relief somewhere down the line. I'm forever grateful for the surgery to remove the cancer because the alternative would be unthinkable. So please keep trying to find a solution for and with Wayne because there's still a chance for us x