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 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 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

Hi Hilts

Thank you for the very encouraging message - always uplifting. I'm sure your hubby deserves and enjoys his beer!!  I have found that Baileys 'slips down' so really enjoying the odd glass or three. 
 

Andi xx

Spoke too soon, the feeding line got blocked so he's back in hospital for a replacement to be fitted.  Hoping this doesn't put his chemo plan in jeopardy.  

Not quite past the distraught stage yet and I genuinely don't think I will be until he starts the FLOT treatment.  I know it's going to be a difficult journey for him and all our family but can't wait for the treatment to start to begin his fight back against this horrible disease.

Seems it's not unusual for feeding by tube, judging by other posts.  Currently the tube is in his nose, squeezing past the tumor and into his stomach.  Are the medics likely to fit him up with a direct line into the stomach if this turns out to be a long term arrangement?

Here's hoping my distraught soon gets changed to something more positive.  I will try to think of something suitable.

Hi distraught 

on the subject of feeding lines the one you get post operation known as JEJ goes in about 4 inches to the left of your belly button and into the small bowel or jejunum it is easy to maintain as its quite short but needs flushed out with sterile water after use , i had mine in for about a couple of months , i think it can only be fitted during the surgery though , take care now

Regards

Douglas

Hi all, not so good news today.

We had a meeting with the oncologist (first meeting post surgery). He confirmed that although my Dad had had a successful esophagectomy 7 weeks ago, the scan has shown it has spread to the liver and probably also in the blood stream and maybe lymph nodes.

As you can imagine, this is really hard to take - a feeling that we always had but one that we hoped wouldn't happen. 

The oncologist has said the plan is again palliative and the chemotherapy will start again in 2 weeks time after my Dad has strengthened more. 

I guess we are back somewhere near the start of this journey again, back in August 2020.

Lee

Hi all, not so good news today.

We had a meeting with the oncologist (first meeting post surgery). He confirmed that although my Dad had had a successful esophagectomy 7 weeks ago, the scan has shown it has spread to the liver and probably also in the blood stream and maybe lymph nodes.

As you can imagine, this is really hard to take - a feeling that we always had but one that we hoped wouldn't happen. 

The oncologist has said the plan is again palliative and the chemotherapy will start again in 2 weeks time after my Dad has strengthened more. 

I guess we are back somewhere near the start of this journey again, back in August 2020.

Lee

Hi Lee,

That is tough news to take on board.Very difficult for your dad and all of you. I'm not sure what to say other than they are continuing with treatment and hopefully chemo will keep it in check and your dad can build his strengh. 
I appreciate you letting us fellow travellers know as I certainly feel a connection to you and your dad. 
 

keeping the faith for you all

Milly

Hi Lee

So sorry to hear about your dad - keep strong

Andi x

Hi Leechap 

sorry to hear your journey has taken you down a more difficult road and i hope the palliative treatments provide your dad with good results , surprisingly i bumped into a fellow patient last week with who i shared a ward with in hospital and has been getting ltreated for liver cancer for over 2 years and he is still receiving treatment as we speak , anyway take care.

Regatds

Douglas 

Thanks Douglas, any true positive stories are a real help at the moment. We'll keep fighting as we have from day 1.

Lee

Hi y'all, 

I am really only trying to come once a week now!!!! Not because I don't'love y'all' anymore, but 2-3 times a day !!! Need to find a 'hobby'(:

Lee- what can I say absolutely keep fighting, but also LIVING, get out there and live it up. I know I tend to be a bit 'over positive' LOL. Do remember that palliative does NOT mean check out time- it means treating a chronic condition when symptoms play up. There are a few around on here that have been palliative with OC , one for at least 8 years and another who was deemed palliative, become disease free after a load of chemo and immunotherapy- so get living xxx

As for me 'dreading' New Year's Eve-  , not really anymore- I kinda expect those expected events on that date!!! LOL. At least I can 'plan' - what else can you do eh!

Welcome  also to two newbies- Tracy and Tipo. The ever expanding oesophageal cancer club x None of us medics on here , just experts in the lived experience of 'living the dream' ask away. Tracy- my husband was diagnosed originally with the same as yours. Ask away- nothing 'off'limits (:

Tipo- you are also pretty much the same as us. My husband 'bless him' , a year post op still doesn't quite get the concept of 'little and often' .Looks like you may only have the post op chemo to do then?
 

Keep keeping that faith my fellow rollercoaster riders

Hilts

Hi all - nice to hear those words of encouragement Hilts, whenever I read a msg like that, it does definitely give us an upbeat feeling (which is greatly needed at the present time).

Tipo - welcome to the forum and walking 2 miles a day is a very good achievement.

Andi-keep practicing that walk to the departure gate!

Redski- nice to hear you're out having a nice family meal...nice choice of pasta

Lee

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.