Complications from the oesophagectomy November 24

Hello Galloway 

I am Brian, one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't give you an answer myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the page and I hope seen and answered by other members of the Oesophageal cancer group.

I do hope you find some encouragement as the present situation can't be good for Stuart.

Best wishes - Brian.

Hi Galloway, i just thought i would respond to your post but not sure how useful my comments will be.  They come from someone in a similar position to your Stuart. I had my oesophagealectomy in August 23 following four rounds of FLOT chemo. Then more chemo after. Even though the treatment was horrible,  a few months after i started to feel as though i was on the mend.

In August 24 following a little discomfort in my chest a further scan showed what they thought was an inflamed lymph node.  A pet scan followed that,  and showed what was diagnosed a an inoperable but treatable cancer in my right upper trachael lymph node.  Chemo and radiotherapy followed up until Christmas. Initially it looked as though the cancer had been stunned into submission but it started growing again. At the moment i am waiting for a follow up meeting after my latest scans. It has affected my voice and reduced me to a whisper/croak. I am also starting to have difficulty eating/swallowing which is affecting my weight.  I have always refused a nasal feed tube as i don't like the thought of it and while my weight is pretty stable around 72kg down from 137kg in 23, I am now wondering if i should contact the dieticians for more advice.  How does Stuart cope? I don't know what the future holds or if a tracheostomy may come my way. I suppose it depends on the direction of travel.  I was told it's inoperable because of its location next to major blood vessels and other structures. I find it hard to understand why they can't operate especially when you think of the major surgery we have already had. Surely if the can cut you nearly in half, break your ribs, collapse your lungs, cut out your oesophagus and stomach then put it all back together. Why the issue with a lymph node. You hear others saying operations are not possible because the lymph nodes are affected but in a lot of ops including mine they remove surrounding nodes as a matter of course to check for spread. It's difficult to make sense of it all. 

I wish you and Stuart well on your journey. 

Thank you so much for taking the time to reply. I’m sorry to hear that you may be in a similar position to Stuart. I’m heartbroken for him. It’s been painful to watch but I try my best by supporting him throughout and I know he’s so grateful. His surgeon has been surprised that his swallow has not returned and she was going to fit a PEG last September but this was put aside due to this latest episode. He found the nasal tube difficult and embarrassing initially though I still think he would be very glad to get rid of it. However, it keeps him alive. Think of it as enabling you to enjoy aspects of your life. I too am puzzled why they haven’t operated to take out the cancerous lymph nodes. I may ask them. He has a scan soon and then the nerve wracking wait for results. I can’t get over how much he’s changed physically. After your chemo did you start to look more like yourself? 

Hi Galloway, i was very big before my initial diagnosis at 137kg. I loved a drink and food was great. I had a little discomfort swallowing which is why i went to the doctors. An endoscopy and biopsies showed the issue to be Adenocarcinoma at the junction of my oesophagus and stomach. I think i had started to lose a little weight at this point but nothing significant.  As soon as i started chemo it made me feel sick and everything i ate tasted like metal.  This obviously put me off eating all together and then the weight just dropped off. Post op I was at 90kg and still loosing weight so they prescribed all these little protein rich shakes,  soups and supplements but they tasted awful. Once my post op chemo had finished and some months later i was back to eating little and often and managing to keep my weight around the 80kg mark. 

Your comments about waiting resonate with all of us I'm sure.  It's just the worst time. What takes them so long i just don't understand.  If you watch these ambulance/hospital programs on tv, they can see the results immediately. I know they have to wait for an official interpretation by a radiographer but even so.  It shouldn't be weeks later. You're just sat worrying and this thing inside is growing and spreading to a point where it is to late to help.  Or that's how it plays out in my head. I have had no further treatment for my secondary cancer since last christmas. Even though the scans i have had have confirmed that's it's still growing.  At each consultant review they just say we need to wait for more diagnostics and reports.  I have my next meeting on the 23rd. I have written down quite a few questions ready for this one. 

My wife is the one person who has been there for me at every step. She has stayed strong and held me while I've cried, when she is desperately needing support herself. While we do discuss things and i have made changes to make sure she it's self sufficient and able to cope financially if this cancer takes my life away. I feel helpless. I know she must be thinking the worst and wondering what the future holds. I want to be positive and make each moment we have left together count but it's difficult to do that when we are both full of unspoken dread, unanswered questions and am uncertain future. 

One of the greatest things for me is still being alive to watch my great grandchildren come into the world and watching them grow and develop their own little characters. Let's face it, people face death and die everyday. And all sorts of other more awful conditions. 

Stuart and yourself sound like an awsome team.  If he's anything like me he will love you even more deeply because of the journey you are supporting each other through. 

Just be there for him.  I'm sure like me he is frightened about the prospect of dying and how that will come about. But let's stay positive in this moment for each moment of each day is the chance to make more memories.

Hugs to you both. 

Thank you for your kind words. Before we entered the awful world of cancer treatment I had no idea how complicated and difficult it was. Stuart had his chemotherapy yesterday and is resting watching The Hobbit films. Once he’s recovered from this last treatment I must encourage him to get out locally. Maybe once his hair grows back in he’ll feel more like it. He so enjoyed taking our dog, Isla, out. I was food shopping this afternoon and looking through the cereals which made me so sad as I remembered Stuart loved cereal in the morning. It just catches you out despite carefully avoiding thinking about the sad stuff. Anyway, I’ll finish. Please stay in touch and I hope your team come up with a plan soon. 

Sending hugs, 

Anne