Hi all,

Just come up after a great evening - we feel very young lol! And where do I look on here if course! 
Scott : my husband 'took a turn' a week after the op but they sorted him out. They truly are brilliant in ICU!

Andi keep going and yes you will see your great granddaughter! 

Hilts  I hope your husband is recovering well after his latest operation.

keeping the faith for everyone 

Milly 
 

Hi Hilts

They have just found me a trolley to put my oxygen bottle in so I can walk alone - too weak to carry the bottle. So I can get more exercise and get stronger - and get HOME !!!

Andi xx

Hi Everyone, 

I have never posted on a forum before so no idea how not to reply to some specific (sorry about that!)

My mum has just been diagnosed with OC with an 8cm tumour, we are going in for her CT scan on Tuesday. It has all happened really quickly and what I am sure always feels out of the blue. She is 69 and lives on her own. I live 2 hours a way and have a one year old so its all feeling quite overwhelming at the moment.

I wondered for my first ask for help if anyone can suggest how I can stop her losing the mad amount of weight she is losing. She is such a lover of her food and she is managing just on complan and watery porridge. I have just ordered some Huel but is there anything else we can do at the moment to help her keep her energy and weight?

We are waiting for the facts too but I could do with knowing what we need to prepare for, she is in denial at the mo (not a bad thing I think) about the care she will need through treatment and what happens next. I am looking at how I can stay with her or she stays with us but she is very stubborn about her independence understandably.

I would love just to follow your stories and connect, learn and hopefully keep positive 

Thanks for reading xx

Jen 

Hi Jen,

Welcome to the club that nobody wants to be in!. I am just over a year down the road with my Dad- have a good read of this thread and there's really useful information from everyone that has gone through the journey or is still on it.

On the point about weight loss - we found that having lots of smoothies (we have a nutribullet) full of different fruits, veg, nuts etc. Is a real good way of getting goodness and quantity inside whilst also being relatively easy to swallow (compared to solid food).

My Dads path was only chemotherapy but as a result of the chemotherapy (and other means) reducing the cancer,  surgery became an option. 

As it's been said on previous threads,  this part of waiting forca 'plan of action ', can be the most worrying as your mind is all over the place. 

Please read through the individual journeys on this forum and you'll get a lot of info and encouragement. 

Lee

Thank you so much Lee, so glad I've found this thread. It's already making me feel a sense of relief, it's such an isolating time. 
thank you for the nutribullet ideas, I didn't even think about that.

I hope your Dad continues to do well and his spirits are positive. 
 

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!