Firstly thank you to all on here who have been so supportive and helpful through the diagnosis and pre op chemotherapy journey. The support and advice has been so helpful and I have learned so much from the experiences of others.
Chris, my husband, had his op on 16 April, surgery went well and was completed more quickly than I expected. A bit of a blip with heart rate meant he stayed in ICU for a few days but was discharged and came home on day eight. He was amazingly well …… no problems moving around, climbing stairs or bending etc. Eating softish food without problems ( no feeding tube) …. not too many problems with dairy or sugar so far. Tired obviously and needing regular rests. The only blip … bit of a urine infection and a badly leaking drain needed redressing.
Progress has continued well and he’s already mowed the lawn 
FAST FORWARD to yesterday and our follow up. Cancer was removed but margins were less than 1mm and 11 nodes out of 37 removed showed evidence of cancer. Much more advanced than any of the scans had suggested. Apparently Chris had already been discussed at MDT meeting who decided no further treatment. Chemo had only shown partial response we think and the last round had caused neutropenic sepsis. The surgeon has said she is asking the team to reconsider no treatment and to use radiotherapy …. Chris and I want this as he was also willing to continue with post op FLOT come what may.
Has anyone any positive thoughts around this diagnosis? I really need some.
I feel angry that a decision around treatment did not include us but was left to the surgeon to try and explain. She clearly doesn’t agree possibly because she saw how well Chris is doing now compared to when the oncologists saw him last. Oncology is at another hospital. I welcome your thoughts.
Geraldine xx
Oh Geraldine, I'm so sorry to read this is happening to you and your hubby, and that they've not involved you in the decision! What an odd thing for them to do.
To try and help with positivity, my margin was less than 1mm, and although I only had 2 nodes infected, I did manage all 4 rounds of post op FLOT (at 80% dosage as the 100% also gave me neutropenic sepsis). After that, and because I am in the intensive cohort for SARONG, I've had regular scans, and my first two were totally clear. As you know, from my recent post, I have a bit of a cloud over me at the moment after my latest scan, but I've had some good clear scans and a clear endoscopy since, and still feel really healthy. I'm hoping it's a blip, but I'll face whatever it is with the same tenacity as I did before.
Originally they were only going to offer me post op radiotherapy, but changed it to FLOT as they said it gave slightly better end results. I'm not the expert, so went with what they suggested. I'd have been happy with either, but the FLOT was hard going and took a long time to recover from. There were times I wished it had been radiotherapy!
My surgeon told me that in the UK a 1mm or less clear margin leads to post op radiotherapy or FLOT, but in the US they still deem it as clear and don't follow-up like they do here, so anything your hubby has afterwards should be a positive... that's how I viewed it, so was happy.
I feel for you though, particularly over not being involved in the decision. Take comfort from how well he is doing though, and positive mindset can definitely help 
️
Thank you so much Nicky ….. that really helps 
Dear Geraldine,
I am sorry that the news you have received has been so negative, especially after everything that Chris has been through, I hope at the next meeting other treatments are considered.
I can only suggest that you ask that Chris be considered for any trials that may currently be available, it is something that Dal was offered when his treatment stopped working, I know it is different, due to there being no surgery, but the trials are regularly coming up, and may be available.
I wish you both the very best.
Lowe'
You have really been through the mill Sarah ….. I can so relate to it being the centre of every day. I feel like that even more than my husband I think …. he’s better than me at compartmentalising things and not really wanting to know the details until he has to. I think your anger at not being tested sooner is justified ….. possible early symptoms are not recognised even by GPs. I knew what was coming the first time Chris choked and I told him not to come home from GP without an appointment for an endoscopy. I only recognised what was happening through having supported my neighbour and friend through the same illness … she was sadly diagnosed too late. I find it surreal to be fighting the same battle again but with Chris.
The last FLOT floored him and he had neutropenic sepsis too plus terrible hand/foot syndrome ….. his fingernails are still coming out. Again only a partial response and apparently this combo was thereason for no further treatment. Chris though recovered really well and went into surgery fit and feeling great ….. he is 70. He was out on day 8 and has made a brilliant recovery ….. walked over three miles this morning already.
I have shared my feelings with the team and the upper GI nurses are also questioning the absence of further treatment. The surgeon wants radiotherapy to the surgical site …. so all is to be discussed with oncology again on Friday. I know chemo would floor Chris even more but he wants to try even if he only manages one. He doesn’t want to think …. what if ……. rock and a hard place for so many.
I do hope you have lots of support ….. I shall cross everything for your clear scan in June.
Scanxiety is a thing I have learned ….. and something I’ll have have to try and learn to live with from now on too. So hard!
G xx
