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

Bfg, have to say that isn't so bad this time round as it was with the first lot of chemo, could have inflated a small airship then!
Hilts, that's really interesting about PET scans, always wondered

Thanks everyone for good wishes

keeping the faith

Hi all

Yes , Tabnabs- I knew absolutely zero about PET scan before this, but my chemist of a husband felt he had to describe in fine detail the whole thing(:

They inject you with radioactive glucose, let is find its way around the body for a bit.

Cancer cells LOVE sugar, so they really love to absorb masses of the glowing glucose (:, shove said person in scanner and watch the little ba* rds glow., BUT , and there is always one, even though microscopic cells will soak it up, they are too small to be seen on imaging. So any 'tumours' have to be over a certain size. I might be talking rot, but that is how I am understanding it. Amazing bit of kit really(:

Yes, Millie we've been out all day, not in the sports car (:, but on the river - not in it for a change. Sailing- soundS glam - er no, just one of those inflatable boats that you can buy from a major sports shop beginning with D and just drifted down river, once had enough, deflated it and go the bus home (:

Now just poleaxed on the sofa (:

keeping the faith

hilts

Hi all, just at the start of this OC journey, lost my dad nearly 10 years ago to this awful disease. Not quite ready to share yet as still trying to wrap my head around it all, but have spent the day reading this chat and am inspired, in awe, and feeling comforted.

please forgive me for not sharing more x

Hi Bee-Q

Welcome!

I haven't been on here long myself but I have to say what an awesome group this is, really supportive and very welcoming. 
take your time to absorb the news, and share when you're ready,

it's a really tough time for you, but we all understand and have been through the mill one way or another.

keep the faith

Tabnabs x

Hi Bee_Q and welcome. 

I can only reiterate what Tabnabs has said - this is a place where you can find very useful and encouraging info that can help you in your journey through this horrible illness- stay strong and believe that each year that passes better, more advanced medication is found and used to fight this cancer.

Good luck 

Lee

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 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