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 y'all

Andi- you MADE IT home for Xmas - big clapping emoji's. You will be 'weak' for at least 3-4 months. Like Doug says, major major procedure. As for post op chemo, as Doug and Milliemsaid, very individual and person choice. My husband has excellent pathology, but went for it anyway, tough few months, but did finish. As for the feeding, again very personal thing, husband kept his in until after post op FLOT finished. For him it took the pressure off trying to eat to maintain the weight. We also shoved loads of water & feed  down it during the FLOT nausea . 
in answer to your socialising- YES, YES AND YES (: but only when you feel ready. We have been out for many many meals, as I think has BFG. My husband has no concept of 'little and often' and he does sometimes pay the price (Wally), when you feel more up to it, we found 'Indian' take away's good, cavery's, 2 starters instead of a main and he always goes for high protein stuff like steak or fish, but less veg and starch. And of course beer, but the less said about that at the moment the better ( growling face emoji).

As for going away- yes, we've been on 2 hols, one abroad. So once you have recovered, get booking- you don't come through trauma like this to sit a home! You will also need to buy a sports car.....

Distraught- as Doug says, the name is gonna have to change to something like 'curative', hopeful, or rollercoaster rider. You have had quite'good' news really, but rather a 'bummer' of an Xmas. and you are starting treatment vv soon, so the time is up for those dodgy cells. The chemo is no fun, but my husband saw an improvement in swallow after 1st FLOT and eating back to normal after 2nd. So onwards you two xx

As ever, keep keeping that faith

Hiltsx