Hi everyone. Sorry for highjacking the thread but its active and I've read many of your stories and see you're all such a supportive bunch I thought it might be worth reaching out. My dad was diagnosed stage 3 summer 2021 and had flot chemo followed by surgery in October 2021. He's now well into his recovery from surgery but is very tired and sick and still finding it hard to eat anything. He's also been unfortunate to suffer from a deep vein thrombosis in his leg which is really painful and is adding to his discomfort. He is due to start post operative radiotherapy this week but my mum is very worried because he is still so uncomfortable and sick and she fears he's just not up to the radiotherapy and sees him "wasting away" in front of her eyes. He sleeps so much, and whenever I go to visit, he sits with me for a few minutes and then goes back to bed because he feels sick and doesn't like wretching in front of anyone. The oncologist and surgeon are pleased with his progress and surgery outcome, and have offered the radiotherapy to be on the safe side as they didn't find any spread into lymph nodes. What I'm hoping for is any advice or stories about people's experience after surgery so I can tell my mum and dad that what they are going through is all part of it, and that you can come out of it the other side. I've read here about people going on holiday etc and try keep telling them these stories to keep them positive. 

Thanks for the info

Bought a point and press thermometer which works a treat.

First day of chemo was 12th.  He's feeling very cold, tired and a bit sick and is still being fed by tube. I'm feeling far more positive now treatment has begun.  How long before he starts to feel the benefit?   Can he drink while the tube up his nose is in place?

The staff at the Oncology unit are great - so helpful, kind and understanding. 

Next cycle to start on 26th

Hi Distraught, 

Good, your off then- clapping emoji's. Absolutely yes, to drinking with the tube in nose. 
As for feeling better, mine at the start was about a week after the chemo before he felt slightly better, I terms of tumour shrinkage and being able to actually get stuff down, about 10 days after the first chemo, but really really improved after the 2nd - BUT everyone is so very different. Yours may not feel like eating because of nausea and tiredness or just doesn't want to. AS for room for food to pass and chemo shrinkage, again , all so very different, mine's adeno was 'longer' rather than 'fatter', so didn't take much to flatten it to make room. Depends on its 'figure' LOL. Being cold goes with the turf, does improve over time.

HI, BL123, 

welcome to the club, not hijacking at all- public board n'all.

Yes, the post op period is tricky and yes, unpleasant. THe weight just starts to drop off. Mine lost all his weight in this period, up until he finished his post op chemo , about 2 stone in all, his butt disappeared (lol). We are now a year post op exactly , I would say he was really blah until he finished his chemo toward the end of March,then after that well, we booked and went on holidays, got used to the new plumbing etc and eating. So by now a year later he is back at work, weight gone back on ,bought a sport car (lol) and we are booking hols again.

So yes the post op period and treatment is grim and you feel like absolute pants. It feels never ending, BUT IT IS NOT and you do get there, little by little.

So crack on and finish this rollercoaster.

Keep keeping that faith folks

hilts

Hi Hilts and everyone,

Just checking in to see how everyone is doing? 
We did some walks on our visit to the Peak District. I was going to say that the 'Dumping Syndrome' hadn't been happening but unfortunately 'thought  too soon'! Husband is really trying to gain some weight whilst I'm trying to loose it lol. Seriously it does seem difficult for him but he has managed to gain 3lbs. I've read it usually takes time around a year? He's doing very well overall and he's managing the beer Hilts! 

Distraught - hopefully you are feeling less distraught - yes I agree with everything Hilts said. My husband used to take his own drink/food for the day but they did provide warm drinks and sandwiches etc. The cancer nurses were brilliant. He also took a snood and gloves and wore them when the oxiliplatin was given. It did affect his throat but not badly. Hope all goes to plan tomorrow.

BL123 there are patients who get through this very tough time and come out the other side. My husband had FLOT/OP/FLOT so not sure about radiotherapy but I know it is offered to some patients. Every case is unique but my husbands path took an unexpected and unusual turn a week after the op which resulted in complications not to do with the initial operation which went well. He made it though and yes we've had a few breaks away in cottages in the UK. Home from home with no pressure to do anything if you don't feel able to but just a change of scenery makes such a difference.

There are others on here who have come out the other side.

Anyhows hi to all and thinking of you all and your families.

keeping the faith for everyone 

Milly

Hi Milly - good to hear from you. I hope everyone is doing well - a grey and gloomy time of year. I have been told that it's too late for my post op FLOT - as now nearly 4 months and my oncologist said it needed to be given up to 9 weeks after op!! Bit gutted as it's the 'belt and braces'!! Has anyone else not had the post op chemo??  I now have my feed line out - can soak in the bath - blisss!! The thing I find hardest is sleeping 'sitting up'. I'm hoping to go to Scotland in May - hope I'll be OK - at the moment I'm feeling quite sick - but hopefully it will pass  - any tips always welcome  

Keep smiling

Andi xx

Hi Andi,

Lovely to hear from you and good news that the feed tube has gone! Re chemo it's strange as my husband was offered it 12 weeks after the operation. His oncologist said it's usually given between 6 - 12 weeks after the operation so he was just within that timescale. 
Regarding sleeping we invested in an electric bed as we had ordered a new bed which due to COVID hadn't been delivered and then Kev was diagnosed etc. You do get the VAT taken off due to it being a medical need. 
My husband also bought a wedge pillow off the usual internet shop! He has found this comfortable too. Also an inflatable one - so all bases covered lol. 
A trip to Scotland sounds wonderful! 

keeping the faith 

Milly

Hi Milly

i think it's just too late for me to have chemo - as was in hospital for 10 weeks and still too weak to have it. I'm sure things will be OK!!  I have a wedge 'pillow' which helps. - will look for an inflatable one - thank you. I have thought about the electric bed - I'm sure it would help. 
 

Thanks for the tips

Andi xx

Hi Andi,

Sorry to hear your out of the window for follow up chemo, I visited my surgeon last week and he said oncology want to give me post FLOT however he said he felt that I don't need it as the operation was a total success I'm recovering well and more chemo means taking a step back.

I did ask why they thought more chemo was being recommended, he said that apparently I was in the 20% of people who have an excellent clinical reaction and it's not often they get a patient of whom post chemo gives increased chances of reduction the potential of recurrence

now I'm not sure if that's BS but he said it would improve my chances by 4-6% I've got appointment with oncologist to discuss further as we all know chemo is nuclear 

my operation was 9th November, so we are 13+ weeks and consultation next Tuesday 

I'm eating well, walking between 2-6 miles a day and back at work, I'm managing well just not keen on taking any steps back, just want to crack on with life 

Tipo x 

Hi Tipo

That's very interesting - they told me post chemo would increase chances by 5% - about the same - and knowing how awful the chemo is I really don't think I'd have wanted to step that far back. Please let me know what your oncologist suggests!! I' m still breathless but improving a bit and couldn't have full dose!!

Great to hear you are doing so well - my op was in.  September - and it's taking ages 

look forward to an update 

Andi xx