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.

Aha! Hey- Hope

As our Lee says - welcome to the club nobody wants to be in, but hey ho here we all are - The oesophageal cancer club. Glad you've found us x I bet you thought OC was quite rare..... as you can see there are a LOT of us x

I am , like you, the watcher, my then 56 yr old husband diagnosed, literally out of the blue in July 2020. We are out the other side ( for now- I always say that , trying to not tempt fate! ).

This is the very very worst part, the shock, horror, tears, anger,  confusion...... the human emotions exploding everywhere. The unknown. The diagnostic process feels endless. But once you have a plan it does get slightly better.

Like you, we have young kids, tweens, at the time , now very much teens!!!. As for how you'll manage, you WILL xxx

Diet- Anything she can get down . The higher in fat and protein the better.  My husband melted cheese in everything, olive oil everywhere, custard, trifles and loads of cream. He didn't' 'get on' with all the suppliements, so never really bothered. No doubt they would have been more palatable if they were 'beer flavour'! 
We all refer to this diagnosis and treatment as - the rollercoaster - emotionally and physically and everything.

Ask away- whatever is on your mindx

Andi - what a fashion accessory LOL, YOU ARE OFF- mobile- excellent. Don't worry, I have just bought myself a shopping trolley!!! LOL - functional, but I feel like my mother !!!

Hope everyone is chugging along. 
Keep keeping the faith

Hilts x

Thank you so much [@Hilts]‍  I have recently gone through this bloody rollercoaster with my Aunt who passed away last year so its all a little fresh to be back here again with my Mum. It's a horrible horrible torturous time, all the acronyms and jargon don't help!! I am a research fanatic so really not sure if knowledge is power or knowledge is @!£YU?£  Anyway, we are where we are and going to keep us both distracted best we can this next week.

How long did everyone wait from diagnosis/endscope/CT to MDT meeting? I am trying to get a handle on how long I can keep sane!

Hey Hope x

Yes, there seems to be a 'lot of it about' , I don't know what on earth is going on with cancer- it seems to be everywhere! - but I suppose we as a human race have a handle on many of the 'old illnesses' so I guess people are living longer and better, giving the old C time to move in. I am a bit of a pragmatic type of chick and still retain a sense of humour, even in the darkest of times (: essential I would say for this rollercoaster! 
Time to treatment etc. It very much depends . We got 'lucky' (: ours kicked off the same time as Covid, so everyone was focused on that, so I guess people just weren't being seen or referred! So E day ( endoscopy day) was 29th July, then CT Scan next day!! I thought OMG - that's it, but no, ct were quiet.got a phone call of the nurse at MDT the same day!!! You can imagine the panic! THEY Gave us 3rd August to come in for the 'chat', we delayed to the 8th as we were going on holiday! - what else on earth are you supposed to do eh (:. So, went along, told us what they thought , staging etc,and what they were going to do, dependant on upcoming PET scan . Started chemo 5th September. Finished the whole thing on 4 th feb - I think.

DONT LOOK AT GOOGLE! LOL - it is a horror show, the worst of the worst case scenario in all aspects- we all do though (: if any of us took what was fact on the net, we would have all popped off in a week- even the medical sites are bad bad. For me, it bears NO relation to the reality at all- don't get me wrong , it is no fun, BUT, honestly, the doom and gloom on there is enough to finish anyone off.

Keeping sane! Good,luck with that ! Don't even try too hard- you are human, with all those human emotions. If you need a meltdown, have one, gawd knows , most of us on here have had several.one posted made me laugh out loud once, posting "what not to say to cancer patients" , you know the sort of things other people say trying to be 'helpful' I still laugh at it now, it is on here somewhere- lord knows where though. I love 'how are you coping' and 'stay strong' - what on earth to either of them look or feel like- sorry , I am quite a literal chick'

Anyhows, snowing here, and kids are chucking it around and husband has gone out 'posing' in his dressing gown. Arrrrg

Keep keeping that faith

Hilts x

PS- I note your Mam is on the old complan- just my humble opinion, but gawd is it rank!! Like most of the supplements- you think modern medicine would have advance to things like mohjito flavour or something!! My husband just stuck to what he fancied, but modified.

You take your eye of the chat, and look what happens…..

Hi Andi – never have I been so utterly delighted and chuffed to bits to read your post!!  It’s nearly 9 months since my op and you sort of forget that it’s quite an ordeal at the time and for some even more so. Well done on getting this far and I would like to apologise for the “minced and moist” diet that you are moving on to – I still wake up in a cold sweat having the occasional nightmare about it. The name of the game now is “baby steps” – each day is incrementally better, and some days you will feel rubbish – but it will improve and you will be home for Christmas!

Hi Scott – post op, they are ultra cautious and will keep a very close eye on things – I hope your dad is improving now.

Hi Lee – it’s back to baby steps, but his steps look like they are following mine and there will be incremental improvements.  I too was in surgery for longer than expected (I think I mentioned on one of the threads, as it was quite funny (but not at the time)).  My memory was arriving in ICU post op to have a phone thrust in my face to tell the missus that I was still alive. 

Hi distraught – great news on the PET scan.  It all sounds very similar to my results.  He’ll probably have a laproscopy booked in too as a final, final, check and then you will move over to the oncology team for the first round of FLOT.  Assuming things haven’t changed with the “gold standard” for treating this, it will be 4 cycles 2 weeks apart, about 6 weeks past the last cycle for surgery, and then the final 4 cycles starting 6 weeks post op.   The support teams are phenomenal – and they will probably scare the proverbial out of you with all of the possible side effects, and to be honest I would say that those of us who have been through it on this chat have had almost the full range of possibilities between us, which is not meant to worry you – but just to say that we all react differently and with varying degrees across the symptom range.  It’s a case of buckling up for the ride with the first one being the worst – primarily because you’ve no idea what’s coming and his mind will be working overtime.  Keep the fluid levels to flush the stuff out the system, and take the medication they offer.  Talk to the team about any side effects (most of the medication they give you acts as a buffer for the worst of it) as they can tweak things around.  And don’t forget to ask away here too- I’m sure we’ll help where we can.

Hi hopingforhope86 – there should be an upper gi team who (you may need your mums permission) you can contact on anything related to timescales.  But your MDT will be “weekly” so often it depends on when you’ve had the scan as to when they discuss the results and get back to you with the next steps.  And as Hilts says – any high fat, sugar type food – this is not the time for “healthy” eating. 

Hi BFG

Thank you so much for your reply. I start minced and moist tonight - even the name !!!!!!! Bad day today as told I will be here AT LEAST another week - I so want to go home. The 'up' side is I've gone all day without oxygen and still over 94%. They are making me keep it in over night - but hopefully nearly gone. How are you coping - are you eating OK  - how was the second round of chemo?? 

At the moment I feel as if this will never end - 9 weeks so far - just depressing!  Anyway - must put my 'feed' on - another one of the joys. Apologies if not an up beat message - feeling very down today - as you say - good days and bad days!! 
 

Andi x

Hi Andi- are you kidding. I challenge anyone to be upbeat on the minced and moist. The best thing is that's its the sign of massive progression and brings you closer to going home. 

There is no doubt that the relationship with food changes, but nothing is off limits now - big 3 course meals are out,  but that's about it. 

2nd round of flot was pretty much the same side effects as the first but tended to last a little bit longer - so 4 days of being a GOG (grumpy old git) rather than 3. How did you get on with your first round?

Hi Andi- are you kidding. I challenge anyone to be upbeat on the minced and moist. The best thing is that's its the sign of massive progression and brings you closer to going home. 

There is no doubt that the relationship with food changes, but nothing is off limits now - big 3 course meals are out,  but that's about it. 

2nd round of flot was pretty much the same side effects as the first but tended to last a little bit longer - so 4 days of being a GOG (grumpy old git) rather than 3. How did you get on with your first round?

Hi - after the first chemo I thought it was a breeze - then reality kicked in. The third was postponed a week because I was so ill - it really knocked me out - so dreading it. I should have been nearly through it but won't be until next year now. Ottawa very long journey xx