Squamous Cell cancer upper oesophagus unable to tolerate liquid feed

Hi Flossie60

Sorry that you find yourself here. It's good that you've reached out. There are a lot of kind helpful people on here, all happy to support you and your husband through this difficult time.

I had squamous cell carcinoma, mid oesophagus, T2N0M0, 6cm, in 2021. I was 53, never smoked, rarely drank, generally fit and healthy. My tumour blocked my oesophagus completely so I ended up in hospital on a drip then had a nasal feeding tube fitted, then a stomach feeding tube. I had the nasal tube for a few days, and was fed by pump over many hours. That gave me diarrhea. When I moved on to the stomach feeding tube I syringed the Fortisip, water and medication through that. It was very time consuming as I had to have 6 Fortisip a day, plus all water and medication via the feeding tube as I was nil by mouth.  I really struggled with the Fortisip small bottles, particularly banana flavour. I had the most horrible painful burps and diarrhea. I got so weak because I wasn't getting any nutrition from the Fortisip. The dietician suggested a different type of feed, one that's usually put through a pump, but that didn't help. Then she suggested neutral flavour small bottles of Fortisip and that suited me much better. A few months later I found I could alternates neutral with the flavoured Fortisip, but never banana, that just didn't suit me. 

I had to sleep propped up on a wedge pillow. After every feed I had to sit still for 30 mins. It seemed like I'd just get over one feed and have to start the next. Talking caused saliva to collect at the tumour and I'd have to cough that up and spit it out (one time there was blood in the saliva, from the tumour) so I stopped talking as much as possible and messaged everyone instead, even when sitting near them. Thankfully my tumour shrank a lot after the first chemotherapy so things improved.

I suggest you contact the dietician or your specialist nurse or Macmillan nurse. Mine were quick to help even though it was peak covid times.

Hope this helps. Anything else please ask. 

Amanda 

Hi Amanda 

Thank you so much for responding to my post and sharing your experience that has really been helpful.  The dietician is due for a visit this afternoon so we will be discussing all this with her. 

I have just purchased a wedge pillow for my husband who has to sleep propped up, and will share with him your post and he will feel less alone.  He's not one to go onto forums so that will be my job.  

I'm so glad I found this forum early on in our journey..  Wishing everyone here good health and positivity. 

Flora 

Hi Flora,

My husband was diagnosed December he has a adenocarcinoma mid oesophagus stage 4 and we have just found out small spread to the liver.

My husband is 56 occasional drinker never smoked fairly fit started having issues of upper back pain and food getting stuck with regurgitation.

The weight has literally dropped off him about 3 stone but stabilising now.

He is on a soft food diet and also has fortisips.

This forum has helped me so much the last couple of months and Amanda is lovely and will answer any of your questions so will any of us.

We will never be alone in this we are here to rant at or just to talk.

Stay strong

Angie x 

Hi Angie 

Thank you for responding to my post. The rapid weight loss is scary.  Our lovely nutritionist was in this afternoon and through her support and that of our GP they are pushing for a “rig”, for feeding.  The waiting for the MDT outcome regarding a treatment plan is torturous but I know it is for everyone.  Amanda’s response today was very comforting.  

It’s good to know that there is such a supportive group here . 

Thank you both 

Flora