Hi
My mum is 72 she is luckily fit and healthy but has just been diagnosed with osophaegael squamous cell.
We have been for all the tests etc and I know she is in the minority that it hasn't spread.
The plan going forward is chemotherapy radiotherapy and then the surgery.
I just wondered if anyone had any stories experiences they could tell us about the journey going forward.
We have read all the books but just wondering how life changes and what to expect particularly with the surgery.
Like everyone it had been a huge and devastating shock so just trying to get our head round things
So grateful for any advice
Yes it is good news that it hasn’t spread and that surgery is planned. This is the curative path!
I was diagnosed 7 years ago (aged 62) and had chemo then surgery.
The pre-op pathway has changed slightly over the years (for better outcomes) and the surgery can be slightly different nowadays too. Life after surgery, though, still presents the same challenges, which as a survivor I don’t find too challenging. Having said that, everybody is different and the recovery is a slow one. It takes a while for the revised digestive system to adjust and supplements are needed in the early days and even now I take extra vitamins.
My eating habits stabilised after a year or so and now I’m pretty normal, though I eat smaller portions but snack more! .
I was determined to live life to the full and just a few months after surgery I started taxing lots of far flung holidays with no problems. That has all stopped now of course!
You will hear that a positive attitude and determination do really help along with a sense of humour!
I remember one instance, a couple of days after my op, being walked down the corridor with an entourage of helpers carrying my oxygen cylinder, drains, drips and wheeling stands with monitors etc. Being shouted at by a senior nurse someway behind remarking on my “attractive” behind being on display as my rear fastening gown was gapping somewhat! Something else I remember well was my first meal by mouth: jelly and ice cream! I was eating soft food like cottage pie by the time I was discharged. Nowadays I think they like to feed by tube longer.
The toll on family is quite different to that of the patient of course; so resilience and patience will be required. Best to arm yourself with as much information as you can take in, in order to be prepared for what is to come. Your mum’s specialist nurse will have all the answers. This forum is a good place to hear of different peoples experiences. Keep asking questions and post updates too.
Counting the days, making every day count.
Brent
Hi Brent
Thank you so much for your lovely email it was great and gave us lots of info
I think you have answered my mum's question about can she wear pyjamas with your attractive behind story haha
We seen the oncologist on Monday and she will have 23 radiotherapy sessions and 5 chemotherapy sessions over 4 and a half weeks then obviously the operation
Think it became a huge reality on Monday listening about the side affects etc
Tough times ahead but we will most certainly take your advice and really appreciate you taking the time to tell us your story
So pleased you are doing so well and a shame your adventures had to stop for now
Jane
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