Some positive news.

I am in a very similar position. I’ve had all the staging CT,PET and MRI scans along with an EUS and laparoscopy. My oncology appointment is next Wednesday 26th. 4x FLOT, surgery then 4 x FLOT all bring well.

linda

That’s good news you feel so much better when you have a plan to concentrate on, I’m T3N0M0 and am having a Ivor Lewis end of March Feeding tube is a life line and easy to use overnight having to stay in one position all night took some getting used to !! 

Hi Linda 

So it looks like some of us including dibden doll are on a similar path and timeline. I’ll try to update when I can and if possible we should all do the same. 

Sometimes it helps to know that there are others going through the same thing at the same time that you can talk to. If anything else it will also be interesting to see what slight differences in treatment there is in different NHS trusts. 

Hope you are doing well and I’m fairly sure we’ll all as a group gravitate together during our experiences with treatment. 

All the best and I hope your appointment goes well on the 26th. 

Dean. 

Thank you, it’s good to know that the tube is easy to use etc. I’m going to run it in the day tomorrow for the first time, just because I’m not doing anything. I’d rather run it and be awake just in case there are any problems the first time round. Myself and my wife have been trained on it and know what to do, just a case of remembering or reviewing the manual/YouTube videos as it’s been over a week since we had the training. 

Im sure we’ll speak again, I’m in and out of here when I’m not busy but just in case I hope your operation goes well in March and it is easy for you to get through. 

All the best. 

Dean. 

Just make sure you flush it well as the tube block very easily ! I had to have mine removed as it managed to get its self misplaced ! Apparently very rare but luckily I was eating by then, you might be fine but the liquid food made me very constipated which I think was one of the reasons it got misplaced who knows ‍♀️

Wishing you all the very best on your treatment path. My husband has just completed his 4 pre op FLOT cycles. The first three were maneagable, the last was pretty awful. He is much older than you. I would say there is much info here to help … I had gloves pinned to the fridge door to avoid touching cold things and he was banned from the freezer as neuropathy set in from the start. Likewise a ski type neck gaiter that could be pulled up over the mouth was a godsend. Ondansetron was very effective for any nausea .. he was given that in his chemo pack. Get a good thermometer and check temp at least twice daily. Use the cancer helpline and if you feel very unwell dont hesitate to call them for advice. Hope that helps a bit.

Geraldine 

I absolutely will do. Currently doing the twice a day 60ml flush, will keep on top of flushing before and after feeding too. I’ll also keep in mind about getting blocked up. I’ve already got some liquid laxative just in case things get a bit complicated in there. 

Thank you for the advice, I hadn’t been told anything about that. I had been told more likely to possibly get dumping syndrome initially, but much better to be prepared for both. It always helps. 

Thanks Geraldine, again I didn’t know too much about what remedies I would need so it’s always extremely helpful to know. I’ve seen the extremely common neuropathy stories on here, doesn’t sound nice at all but if I can be as prepared as possible then that’s something I can hopefully deal with. I play guitar, so the thought of losing feeling in my fingers is a bit daunting. Guitar has helped me to relax and enjoy myself for 30 years this April! 

I didn’t even think about a thermometer either, thank you very much for the advice, I’ll invest in one of those tomorrow.