Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

hi,

it,s sad to hear about your loss especially after your mum going through the operation i know its difficult to accept your loss especially when you read posts like mine telling others it will all be fine , god bless you and take care of yourslef and your family.

Hi distraught,

There sounds like a confident plan is in place, good luck.

Lee

hi Distraught

I hope you will be able to change your name in the near future as the treatment gets underway maybe you will just become become "concerned" and eventually "elated " , joking apart the FLOT and the JEJ or feeding tube go hand in hand i used to do four three hour feeds to break up the monotomy , the FLOT treatment itself which tends to take 36 hours is much the same , i used to take loads of bags of sugar free sweets  and bottles of flavoured milk with me , yes i did notice a very quick change after my first cycle and as post operative pathology showed the four cycles had destroyed the tumour , i am 2 years on this month and the overriding thing i would say is be patient when it comes to the recovery period ,i read of far to many people who are having post operative complications by trying to return to a normal lifestyle to quickly , this procedure is big stuff and needs respect , i for one have had a pain free two years and i partly put that down to giving my body time to heal and adapt , anyway if i can offer you any non clinical advice no matter how minor the subject please ask , it's going to be a hectic six months ahead for you but it passes quickly , take care and bless you both.

PS to all you regulars on here a happy new year and i am keeping an eye on your posts

Regards

Douglas

Hi Douglas

A very Happy New Year to everyone. Can you please answer a few questions for me. I had surgery on 29 September 2021 - but due to complications was in hospital until 7 December. I now have to make the decision whether or not to have the second set of FLOT chemo????  What I would like to know is how did you manage to get enough food into you to give up the 'night feeds'??  I can just about maintain my weight with the feeds!!  Also - do you sleep almost sitting up??  
 

Look forward to hearing from you

Andi xx

hi Andi

I chose not to have the second "clean up " FLOT as i had not at that point reached a stable weight after discussing it with my oncologist and based on the pathology report and that decision was the right thing for me ,  i gave up the feeds gragually over about 2months when the actual tube fell out completely one day but by then i had cut it down to 500mil every other day, i continually snacked on chocolate toffees , milk , cereals and anything else in moderation and have eventually got eating under control although it still shocks me as to how little i can get by on , i might have 2slices of toast a plate of soup at lunch and a 400g ready meal on a good day , i also take some supplements for vitamins but not a lot , if i overeat i have learned it's better to just bring the excess back up rather than suffer during the night  , as for sleeping well yes i have six pillows , never lie flat or on my left hand side as  this causes me to regurgitate but fine lying the other way or on my back as i said in my other posts 2years has flown bye and i am now back at the gym , i have also done loads of things in the last year to improve my appearance as i am a bit of a vain old *** and i didn't like the chemo wrinkles and bingo wings also had some massage and reflexology treatments people say how well i look now and i must get a new picture on here soon , anyhow if you want any info on feel good treatments just ask , like me you will probably wonder what all the fuss was about in 6 months time , meanwhile take care and keep on healing !!!

Regards

Douglas  

Hi Douglad

Thank you so much for that - really helpful.  Already I've learnt not to 'keep down' any excess food but I can only eat such a small amount. Can't imagine stopping the feeds but desperate to do it!!  I gather you are living quite a good 'normal' life - do you go out for meals - go on holiday??  I had a Tracheotomy for 8 weeks and am still very weak - but determined to get stronger. It really is a battle!!  So good to hear of others who have survived the journey - I will do it!!

Thank you again 

Andi xx

hi Andi

if i go out for a meal it's i usually look at the menu online before i go and have even phoned and asked if they can do me a reduced portion and never have had any problem , no point in kidding yourself that your going to eat a 16oz steak and trimmings , as for holidays not yet but soon although not sure about travel insurance as i have seen some horrendous prices quoted for cancer patients regardless of whether you are "cured" or not , as for feeling weak i was like that for the first 3 months and i still struggle to open bottles and jars but that is a side effect of the FLOT along with the cold hands and feet , i am sitting here with my feet on a hot water bottle , lol , it's all about building a routine that suits the stage you are at in your recovery that is important , your body will quickly let you know if yout overdoing things , as i always say , "take it easy " , sharing your views and your story on here and with friends and neighbours will also help boost your recovery and promote the  feel good factor !!!

Regards

Douglas

Thank you - really helpful - especially the restaurant menu idea as I really miss socialising - will give it a go. Yes - my feet and fingers are cold and tingly!!  It is a huge help to share experiences on here and with others. I just found nd it hard to even imagine what normality will be!!  Will feel better when I see my oncologist and decide whether or not to have more chemo. 
 

Keep getting stronger

Andi xx

Hi Andi,

So good to hear that you got home in time for Christmas! You have been through the mill and a longer than planned stay in hospital. If you read my post you will see that my husband had a lot of setbacks and he too wasn't sure about post op chemo. He had the emergency 3rd operation on 1st July but decided to go for the chemo after speaking to the Oncologist. He started this on 6th August just 5 weeks after the VATS decortication on his left lung and 12 weeks after the Oesophagectomy. It was tough but he felt worth it. Re the feeding tube - my husband didn't have to use it at home. 
Everyone's situation is unique and as you say the best person to help you decide is the Oncologist. 
Re eating out my husband has done similar to Doug. Carverys are a good option or eateries that serve the veg in separate dishes. We have also asked for two plates when we had a sandwich and shared. 
 

Re holidays we have been away in cottages in the UK which make it home from home. Getting away does make you feel better. We have booked a holiday to Tenerife (meant to be there now) but postponed it until end of March due to the current uncertainty. So fingers crossed. Meanwhile we are going to Buxton in the Peak District for a week. 

Doug I think I recall you being in Scotland in an open top car???

Hilts has been abroad - it is doable but again a personal decision.

I am so pleased that you have posted as I've thought of you often. I hope you had a good Christmas with your new great granddaughter.

keeping the faith as always

Milly
 

Ah Milly - so lovely to hear from you - again all tips/experiences help such a lot. Yes - I will listen to my oncologist - but it's 14 weeks since my operation now - and only 6 weeks since I came off the tracheotomy - my breathing is still bad but getting a little easier by the day. I really hope you get to Tenerife - I so want to go away - I am widowed and do go away on my own but would feel a bit nervous now!!  I have fabulous friends and family who would go with me but I feel such a liability - I know they all don't mind but I'm a bit too independent for my own good - but I'll see  

Anyway - hope 2022 is a great year for you and everyone - keep sharing all the helpful tips

Andi xx

Hi Distraught,

Thanks for the update as I've wondered how your husband is doing. Your timescales are very similar to my husbands. He was delayed by 2 weeks due to DPD test delay so started chemo on 29th January. It's good news that he is on the 'curative' pathway.  

The Chemo is more targeted these days and everyone on here seems to have had an improvement on being able to eat after 1-2 cycles. I was allowed to go in with Kev for the first cycle which definitely helped him and me lol!It's a long day especially the first one. We found the cancer nurses absolutely lovely, cheerful, dedicated and caring. My husband took a flask and some snacks. They will give him lunch but it needs to be at room temperature as the Oxyplatin doesn't like the cold. My husband also took gloves and a snood. Warm clothes are needed especially at this time of year.
District nurses came to our home to take bloods before each session and to dress the Picc line in between. They were great but my advise would be to not assume anything and chase things up if you need to. They are busy people and we had two occasions where the bloods were too late to be sent so we went to the hospital which wasn't a problem as we have transport. Overall the NHS are brilliant just stay ahead and check if you're unsure. Best wishes  and if you have any questions please ask. Just thought you will need a thermometer a cheap digital one was fine. 

 keeping the faith 

Milly 

Hi Distraught,

Thanks for the update as I've wondered how your husband is doing. Your timescales are very similar to my husbands. He was delayed by 2 weeks due to DPD test delay so started chemo on 29th January. It's good news that he is on the 'curative' pathway.  

The Chemo is more targeted these days and everyone on here seems to have had an improvement on being able to eat after 1-2 cycles. I was allowed to go in with Kev for the first cycle which definitely helped him and me lol!It's a long day especially the first one. We found the cancer nurses absolutely lovely, cheerful, dedicated and caring. My husband took a flask and some snacks. They will give him lunch but it needs to be at room temperature as the Oxyplatin doesn't like the cold. My husband also took gloves and a snood. Warm clothes are needed especially at this time of year.
District nurses came to our home to take bloods before each session and to dress the Picc line in between. They were great but my advise would be to not assume anything and chase things up if you need to. They are busy people and we had two occasions where the bloods were too late to be sent so we went to the hospital which wasn't a problem as we have transport. Overall the NHS are brilliant just stay ahead and check if you're unsure. Best wishes  and if you have any questions please ask. Just thought you will need a thermometer a cheap digital one was fine. 

 keeping the faith 

Milly 

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

Hi y'all.

I am trying to be 'good' only coming on once a week. Difficult though. Been very quiet again on here. Hope everyone is trooping along.

post op chemo- sometimes it would be so much easier if they didn't give us so many 'options'. !!
I know Doug didn't have the post op juice. Mine did, but didn't actually'need' it due to good histology. 5-6% is quite low in terms of improvement in risk. and as we all know too well no guarantees in this life. Everyone on this earth has risks and all of us have the risk of cells going bad. It really is a case of damned if you do, damned if you don't. However, if you are feeling good and recovered/ing, and the clinical advice is 'don't bother' then I guess they are saying go and live.

Mine is still having trouble with the coughing- it is soooo random. Not related to the bowel drifting upward and haiatial hernia still all fixed. Our lovely consultant was like "right, that's it, I am determined to get to the bottom of this"- we know it is not dodgy and it is down to 'irritation' and most certainly down to reflux, but how to stop it is the problem. They are thinking barium swallow to see where the fluid is going when causing irritation if that makes sense. Very common......apparently. Luck of the draw and how new plumbing behaves.For us extremely annoying, but y 'know after all the other stuff, minor in comparison.

Other than that, what to say. All good. The recurrence 'fear' is starting to become less bothersome, we know it will always be around, but less anxiety provoking

Anyway

until next week

keep keeping that faith

Hi Hilts and everyone,

I hope your husband's consultant sorts out the nuisance cough. Be interesting to know what percentage of patients have this type of ongoing annoyance. 

My husband sees the Consultant oncologist next week for his 'check up'. Fingers crossed he is doing well. He has been to the local gym for the first time since diagnosis. He has taken part in the 'Active Recovery' NHS program since diagnosis apart from during treatment/ operations!

Fingers crossed we get to Tenerife at the end of March!  

Also I thought I'd mention he was contacted by letter from the hospital to offer him a fourth jab which he has opted to take. It was because he was immunosuppressed when he had previous jabs.

Very quiet on here which I hope is a good news as I think of you all on your respective paths. Sending healing hugs and caring thoughts.

keeping the faith

Milly