New To Group

Hi Moon3 

being a support person is a feat in itself, the very fact that you are here says what a wonderful daughter you are. 

does your dad sleep elevated? How far away is his ultrasound endoscope? 

Thank you. We are trying, just doesn’t seem like enough.

Yes always slept elevated.

We’re not sure as he has an infection at the moment. 

Need it to get a plan in place

I am so sorry for the complications you’re facing. 
It’s brutal and confronting and I feel for you fully. 
I am willing strength into the universe for you to support your dad. 
My husband faced several bouts of aspiration pneumonia prior to diagnosis and before developing a plan. 
We have been diagnosed for 6 weeks & undergone an Ivor Lewis op 3 weeks ago. We are yet to see our surgeon & oncologist since being discharged 1 week ago. 

For us there was strength from a plan but with it a new sense of terror from the unknowns of treatment. 

The most uncanny circumstance occurred for us. Our daughter visited a medical clinic for herself during the intense period of treatment her dad was undergoing, her treating nurse’s dad was 6 years out the other side of oesophageal tumour treatment. He was grumpy and prone to depression and feeling sorry for his circumstances, she on the other hand was grateful for his life and treatment. It was the most bizarre twist of fate for her to speak to her that night, when it was most needed. 

There is strength in sharing. You have come to the right place as this site has been so reassuring for me, I hope you find some solace in shared experience at least. 

Thank you.

It is helpful to read other people’s experiences. Not just from the medical scientific side of things. 

Also think having a set plan would help knowing things were moving forward.

We’ve been told surgery will not be an option but are hopeful for other treatments.

Main concern at the moment him not being able to swallow or keep down water. Worried about a blockage. Maybe someone has experienced something similar?? 

Hello, my husband has 3 lots of biopsies like your Dad and all were inconclusive which is pretty unbelievable and something that he really struggles with, even though inconclusive they said seeing it visually 97% is cancer but doubt is still there that it’s cancer. He did proceed with the first FLOT chemo sessions, last one was 2weeks ago now, had CT scan and it shows now a small area on lung now that has grown during chemo! We are waiting to hear from Lung MDT who meet today to agree with our gastrointestinal surgeon who is pretty confident that they agree that the area of lung can be removed whilst doing the big surgery and it’s lucky (if you say lucky) that they agree lung is on the go into anyway. The waiting to hear at every stage is so hard. You are being a terrific support and that is worth so much, there is so much support and information on here so keep asking questions xx

hi Moon3, you are definately in good hands with this family.  they were there for me once diagnosed, advice when the horrible wall paper paste foam stuff just wouldnt stop, (had good tip for amazon sick bags, discreet, and helped when it happened when out and about.)

pre op and post op, and recovery, there are so many previous forums to gain strength, and support and honest advice, it was and still is a god send for me, my op was jan 8th, now trying to get the weight back up.  feeding tube was literally a life saver.  

ask anything you want, say anything you want, i have had a few meltdowns on here and always got picked up.  and the non swallowing thing is a new normal until treatment, hence the tubes and potein drinks.  all the best,

take care, 

jules x