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

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Hi Bee-q

A huge welcome to the now legendary oesophageal cancer club board.

You share as much or as little as you like. The good and or the bad. No rules ( apart from the site ones)

None of us are medics on here, just fellow travellers on the rollercoaster ride that is OC. I suppose we might even say 'living the dream' I love vomit worthy cliches.

We all on here, I think it would be fair to say, have found each other amazingly helpful. We thrive in anonymity. Although I am starting to suspect we all know each other! So many 'coincidences' (: what's been so 'therapeutic' is we all 'get it' and when one of us has had a bad day, we can all truly understand how the other feels.

We - my husband is the 'victim' me = the chatterbox, are just out the other side (for now- eke). Visable disease free a year almost to the day of 'that endoscopy'. 7 months post op and 4 months post last chemo. We still look at each other and say WTF just happened. Surreal doesn't even come close. He was 56 at the time of diagnosis, expecting maybe an ulcer or two giving him upper gut rot, Long history of reflux, never expected this.

You are probably extra stunned and 'twitchy' having lost your Dad to this, one or 2 on here that it has happened to.

The physical is one thing , but the emotional stuff is a bigger beast altogether.

Hope you keep retuning and sharing as much or as little as you like. I am a great big 'spiller', share most things. It is weird that I find sharing so therapeutic; almost a way of ' processing' everything , making sense of the spaghetti that are my thoughts.

Anyhows

always keep the faith

Hilts

Welcome Bee_Q and Chrissy 

We are a friendly, helpful and supportive OC group. I, like Hilts, am the concerned wife! I've been 'Head of Research' but be careful on that one! My husband is on a 'need to know' path. Probably the better path to take! Lots of sites have out of date statistics and are a scary read.

No pressure on sharing. I 'stalked' this chat until I felt ready to join. Some post more frequently than others and that's what's so good, share as much or as little as you like. We are here and as it's been said we aren't medics and everyone is unique. We have each had different experiences but we will answer questions that we feel able to.

If you've read the posts you will have a general idea of our journeys. My husband was diagnosed at the end of October aged 62  - a complete shock. He is still on the pathway and has an appointment with oncologist this Wed. Unfortunately he has had a few deviations - it's been like snakes and ladders! However hopefully he is back on the right path again! 

Chrissy - not sure what plo means but the cancer team or your doctor may help? 

Keeping the faith

Milly
 

It has been nearly 8 weeks since my mums diagnosis and still she has not started chemotherapy she is 85 and when we went to see the oncologist he said another 2 to 3 weeks before starting treatment in the meantime she is getting worse and struggling to keep anything down even the meal replacement rang for an ambulance at 2 o’clock in the afternoon on Saturday they didn’t turn up till 7 o’clock Sunday morning and my mum was in bed asleep and said no she was not going to sit up A & E for 8 hours again like last week l am beginning to think that because of her age she is being left at the back of the queue hoping she will pass so they don’t have to treat  her no one seems to care what is happening to my poor mum I am getting so frustrated and cross with the lack of treatment she is receiving 

Hi ohdeary

Welcome to our little club, an ever expanding one; one you'd rather not be in, but here we all are.

You mum , bless her,. It is difficult for anyone to comment on what is going on as there are sooooo many variations on diagnosis and treatment plans, depending on staging. Depends if her plan is curative or palliative ( that does not mean 'end game' - it essentially means treatment of symptoms when they play up).

In my humble, non medical experience and opinion, her age would not make a jot of difference, it would be all down to staging and plan and whether she is fit for chemo & other treatments

In terms of her keeping stuff down, do you have any links to the dieticians at the hospital- they have fortified drinks etc. meanwhile stick to high calorie fluid stuff, soups with cheese melted, custard etc Also GP's ( if you can find one!) will also be able to prescribe. Do you have an MDT around who diagnosed etc

As for a 'little loose', yep , any change in diet will do that, I wouldn't worry about that end too much, just get as much fluid food down her. Those 'replacement ' meals are RANK!(:

TBH- I don't blame her for not wanting to hang around A & E for a few hours!!! Much better to stay tucked up with family x if you had an extended team around you, you would unlikely need to call ambulances.

Also you sound utterly fried with good reason. Macmillan and Maggies are the place to go. Maggies in particular are just a walk in job, where you can have a good ball and just talk (:

Rest assured you are not alone

Hilts

Hi All,

Bobbing back to check on everyone and give a wee update.

I need repeat Biopsies as the lab has lost mine. Still losing weight, down a stone and a half in 4 weeks. Saw a community ENT consultant today who scoped and says he wants to do a 2ww referral, what fun! 

Only saw ENT cos my GP thought while we wait for a new biopsy date it would be worth having a flexible scope up my nose to check the voice box area.

So continually loving the roller coaster that is life. Hope you're all keeping well x

Hi Leo25Daisy,

Lovely to hear from you. Im sorry to hear that your biopsies have got lost! Hopefully they will get you sorted ASAP. Please keep us updated and we are with you.

Keeping the faith 

Milly

Hi ohdeary,

So very sorry to hear that your mum has OC.  Everyone's  case is unique and none of us on here are medically trained. It is a complicated cancer with lots of different options depending on the staging and patients health. 
I suggest you contact the team looking after your mum who will be able to help you. Also as Hilts suggested Maggies will support you at this very difficult time.

We understand how hard this diagnosis is but not exactly how you feel as everyone's situation is unique.

we are with you 

Milly

Afternoon y'all,

Update from the front line.

Husband is done and dusted. He had what is known in the trade as a 'parahaitus hernia repair' on tuesday, laparoscopic/keyhole.

Surgeon was very 'chatty' post op, saying large amounts of his colon had migrated into the chest cavity and was pressing on the lung - hence cough - green face emoji- he was surprised his bowel hadn't obstructed!!!
Picked him up yesterday in good nick. The best part of all is that his cough has GONE!!! First time since original op that he ( and me!) has spend the night without it yaaaayyy. Although still taking piriton for the post nasal drip which also sets it off.

They narrowed the hiatus ( which was enlarged to rebuild plumbing originally) and tacked it all in place , so shouldn't move again , fingers x emoji's.

This 'complication' is rare - apparently, very rare in open, BUT, about 20% of keyholes have problems, so it is increasingly being seen.

They also found no evidence of anything 'dodgy' present

So happy day for us yay

Keeping the faith

Hilts x

Hi Hilts...great news! So proper sleep again...both from no coughing and mentally knowing all is good. 

Great news

Lee

Hi Hilts,

Thats great news Hilts! A good nights sleep now! Also brilliant that nothing dodgy was found - so a free MOT included lol.

Really pleased for you both. Don't know if you saw on a post but we've booked Tenerife for two weeks in January all being well - can't jinx anything lol.

Lee any news on a date?

keeping the faith

Milly

Hi Hilts,

Thats great news Hilts! A good nights sleep now! Also brilliant that nothing dodgy was found - so a free MOT included lol.

Really pleased for you both. Don't know if you saw on a post but we've booked Tenerife for two weeks in January all being well - can't jinx anything lol.

Lee any news on a date?

keeping the faith

Milly

Thanx both, 

yep, the difference with the cough happened immediately- incredible. So maybe ,finally,  we can move on. Don't get me wrong, we are vvvv pleased that no dodgy bits, but the cough was driving him (and me) MAD. Fair play to the unit though, they just got on and sorted it.

At the moment we are watching 'For a few dollar more' - I love it especially the score/music. He is pain free and moaning about how itchy his bullet wounds are ......, not wounded by Clint or Van Cleef (:

He was on free fluids straight after op yesterday and got to eat by evening, light diet one might think- er , nope not him chicken korma followed by jam sponge and custard!!! No beer though as hospitals are, as yet unlicensed (:

Millie- you absolutely Enjoy Tenerife- warming the bones and not cooking (:! Is gooood for the soul.As is 'curative' beer (: 

Lee- let us know any updates

Keeping the faith

Hilts

Hi Hilts /Milly, back end of next week...feeling positive but very uncomfortable...just planning everything as best we can so we'll all be ready.

Lee

Hi Lee,

I think how you are feeling is perfectly normal. I felt a mixture of relief that the big day had been agreed but also trepidation.  Remember they are highly skilled professionals whose vocation is to help patients. This op is big so they don't do it unless they think that

a) the patient can tolerate it and

b) they feel it's worth putting the patient through the operation.

Hang on in there and if your dad is aware that you are part of this group please send him best wishes that he has a lot of fellow patients and their relatives routing for him.

keeping the faith for everyone 

Milly

Hello,

Dad has been given new date of next week too, I completely understand how you are feeling Lee. A little helpless but also remaining positive that this is a massive win in the next stage of beating the OC!

I hope all goes well with your dad and I look forward to hearing about his progress!

Hilts - great news on your hubby! Yourself and other have inspired me with your stories over the past 6 months! I talk about your stories to my dad like I know you personally!!