Hi Hilts

not been on for a while , the weight thing is the same as i experienced mine bottomed out at 18kg loss but i have regained about 5kg now , as for the feeding tube i cut mine down by trial and error and eventually weened myself off it after about 12 weeks when it actually fell out , otherwise i hope you are all well , i hope Rayb is ok not heard a word from him.

regards 

Douglas

Hi Doug, 

I guess I am getting to the point where I am checking in less too-  it is probably as we recover and process the whole affair Our brains fill with ordinary stuff.

I know, I am wondering where Ray is, he was op'd a few weeks ago now? So either he is vv good or vv not good!!!!! Don't know how we 'find' him.

Good news on the husband & weight. You are slightly different as you laid off the post op chemo. He feels so sick on it and had the anaphylaxis'event' -his appetite is just wiped out. Oddly ,though he has gone back on the overnight feeds and his appetite has picked up hugely. He is 'playing' with volume and alternate nights, but has put on 6lbs in 10 days!!!

He is currently watching 'Gordon Ramsey's best moments ' oh god, there is no hope. He needs to go back to work, I am laughing my head off too.

Hi All

2 weeks at home now,  and after swapping my antacid ppi to evening and taking a dollop of gaviscon, my 5am reflux has stopped. 

My post op assessment was that yes - lots of weight loss but to be expected and this will bottom out and stabilise. My start point was a bmi of 32, so plenty of wriggle room weight loss wise.  I've been given some shakes to supplement the diet as my taste buds are still shot and my desire to eat is dodgy at best,  although they do say this will change.  Chemo will start soon to mop up any stragglers, and then hopefully end of lock down!

I'm glad your hubbies appetite is improving - there is hope yet. 

Cheers

BFG

Hi BFG, 

Nice one. Yep, husband has done a lot of 'tinkering' with different stuff to make it work for him. His BMI was 32 as well pre op. You 2 are really cut from the same cloth. (:. We are now JEJ - less. It 'fell' out on Wednesday morning!!!, all stitches bust over a few weeks, but didn't think to 'mention' it on the unit. So will probably loose some more. I've just bought him that whey powder, the body builder protein stuff ,so he can sprinkle it  and stir it into food. He hates the drinks. 
A lot of his weight loss seemed to occur after the chemo, between the dex'amphetamine, metabolism through the roof, nausea etc, reduced appetite, but he found putting a stack of fluid down the jej really help, he put a pint through it for 2 days after his 3 rd and only lost 2lb as opposed to 6. 
There is another 'board'  with a lot more recent oesophagectomy's post on- it is on my followed discussions, if you click on my name, should be there. Started by rayb (who is also a victim of a recent shark attack!) called 'oesophageal cancer diagnosis'.  Come on over..

He's just finished his last chemo FLOT without the 0 (:. It is all a bit weird- we have felt very contained for the last 8 months, now we are down to 1 follow up every 2 months, so we have to 'look out ' for ourselves, so brilliant but strange, we kinda miss all the reassurances .

keep eating!
hilts

Hi all in this club,

Firstly thank you for all the posts which I have been following since my husband was diagnosed on 27th October 2020. Like many of you a 'bolt out the blue'. He is 63 (was 62 at the time!) fit, active abd seemingly healthy. He noticed it felt like food was 'stuck' and after chocking on an apple contacted the docs. We were told on the night of Endoscopy (I was sitting in the dark in the car until I was called in) such a complete shock.

The reason for my delay in joining the chat is because until today we didn't know for sure that surgery was on offer. We had a wait from diagnosis until end of December whilst all tests were carried out. I know you like your stats Hilts so T3 N1 M0. There was (still is) a question Mark re lymph nodes and whether they are affected or just enlarged as a reaction. As you will all appreciate it has been very stressful. Anyway they said he was on the 'curative pathway' FLOT, surgery, FLOT but no surgery date set until after the four cycles of chemo followed by CT scan.  The info on FLOT on this site has helped. He coped well, not easy but he managed the side effects and completed the 4 cycles(last one on 12th/13th March. He did drink lots of water including during the night. Difflam helped with mouth ulcers.
 

The CT scan was last Sunday 28th March and the hospital called late this afternoon to say the chemo had produced a favourable response which means he can now see a surgeon and the operation should take place after mid April. A huge relief after 5 months on this rollercoaster which none of us want to be on. However this is the best possible news, as my husband said next it's Beeches Brook! 
 

So that's us really - we will hopefully know more after the appointment with the surgeon. Your posts have made me cry and smile - such positive but supportive attitudes to one of the toughest challenges. My best wishes to everyone and thanks again. 

Hiii Millie 58, 

Welcome  to the 'club'. !!!. 
There are sooooo many of us, all with similar experiences. What is going on!! Maybe we seem more 'common' as 'these days' we can find each other in places like this.

We are done with treatment dare I say 'for now'. Finished last FLOT , without the O last Tuesday. Now it really is feeling a bit surreal! We look at each other and think "what just happened ". We are feeling a bit 'wobbly' as now it is just us, all professionals are done, apart from the routine follow up.

Anyhows, for once all quiet and. very little to report (:

i always respond to any post from whichever board they come, but , there is another 'board' where so many of us post. If you go into my 'profile' and go to 'followed discussions', it is the one started by RayB , called 'oesophageal cancer diagnosis'. We are increasing daily! I think I might call that the 'shark attack survivors club'. One of the group refers to his recent oesophagectomy wound as that- as of course it looks like a huge bite  mark.

i have found through all of this, even in the darkest of hours, that laughing really is a tonic- if you can't laugh, what can you do eh'

Best wishes

Hilts- the data digester (:

Hi Hilts,

Thank you for replying yes your 'story' and others have helped. I've wanted to post but felt like I was tempting fate until we knew that we would be following the surgical route. Your husband has done very well especially with the second FLOT after all the drama! 

 My husband has a tumour at the junction of the oesophagus and stomach so therefore it's more than likely the top part of his stomach will be removed too. Just wondered if your husbands was similar? We will know more once we see the surgeon. My husband is dealing with it all on a need to know basis - I'm 'Head of Research' which can be terrifying! That's why all you guys who have been on this path are such a huge support. He has a positive attitude and is aware it's a long journey - not the type of journey we normally plan ha ha! 

I hope your husband and indeed everyone in this 'club' continues to make good progress both physically and emotionally. I hope we can cope as well as all of you have done - we've certainly 'had our moments' especially tough during lockdown. Thanks for the tip re the other link. 
 

Kindest regards

Milly58 

Hi Millie

i have posted on the 'other side' and see you have made it over. Good

My husband and yours sound like the same guy (:(:. I am head of research and he is on the 'need to know' . I should say rather I am the one who likes winding myself up with too much info, while he just takes it as It comes...

As for where the OC was, d'you know , we haven't got a clue !!!!! We do know that they did take the top part of his stomach, hence why he suffers from regurge. when he has overdone the grub. The valve that keeps,it in the gut is no longer there. So my guess it was probably junction. Considering I love detail , I am thinking I don't care where it WAS as long as it has gone.

People ask me ' how are you coping' arrrrggg, I so hate that word. What does it look and feel like? First up how do they think we are coping, of course we are having the time of our lives........ The answer to the people I can be bothered to respond to is ' I don't know'. I get up every morning, go to work, come home, have tea etc etc . Daisy 71 had a brilliant post some weeks ago that genuinely made me laugh out loud about the things people say. to cancer persons...I am smiling now thinking about it.

As I said on the other post, we are now 'worrying' about reoccurrence!!!! I want clear symptoms, dates, times etc. and of course I know we won't get that ever. I also know they don't use the word 'cured'for at least 5 years ):

Through all of this, one thing that has really helped is sense of humour, laughing. My god, we have laughed at some really really inappropriate stuff.

I think we have ALL had quite enough of Covid. I have some very strong views about the whole thing, but I won't post as I'll probably get chucked off the site and get a knock from the men in black' (:

it is funny , when you get a cancer diagnosis all the rest seems like small fry. Covid and the hysteria has been like annoying background music/ noise.

Better get off kids are fighting and husband is shouting..........if only I could go to the pub!

Hi Hilts,

Thanks for your reply. As you say the main thing is - it's gone! Sounds similar if part of his stomach was removed. Re coping - yes it is an emotive word- things people say is a strange one. Without trying to sound like a sob story we have experienced difficult times before. My mum died from breast cancer aged 51 - I was 24. We have two sons  but our third son although born normally developed pneumonia at a few days old and this developed into sepsis and other complications. It was a very difficult period in our lives and tragically he passed away aged 3 1/2 months after coming home and going back to hospital a few times. The following year my mum in law passed away aged 68. So coping is not easy.  
 

This diagnosis was a complete shocker. I like to know what we are dealing with but sometimes it's easy with Google to get overload! This type of cancer certainly seems complicated! The whole staging process and 'jumping the hurdles' has been stressful to put it mildly. I must say the hospital staff have been great especially considering Covid. The cancer nurses have been brilliant- the rapid response help line just that helpful. I found Macmillan nurses very helpful too having called them (in bits in the car park outside the hospital while waiting for my husband who was having one of the scans/tests).

We are trying to go day by day and making the most of what we can do. Since losing my mum we have always had the motto 'do what you can while you can'. Good on you for booking a holiday and being determined to have fun. Your husband with your support is doing really well and is an inspiration! Keep going - we are hoping to follow! 
 

Happy Easter - get out hunting for the eggs!

Wow, 

You have had some rotten life experiences. You'd know all about what I mean with the word 'coping' more than most with all that lot. All we/you can ever do is put your face on every morning and carry on. I have found my saviour apart from laughing , has been distraction, anything not to think about 'it'

Yep the staging is really x3 complicated and being PRE op it will all be C stage, meaning clinical, what they think it is by what they can see. After surgery you get the P (pathological) which is what they actually found. Turned up all letters and numbers- looking like something Bletchley Park would have to deal with (: But of course I 'loved' that ,as it was definite and quantifiable. 
 

OMG- the service and treatment we have had has been phenomenal, breathtakingly good. The 'media' call the NHS everything and trash it, but when the chips are down, nothing better. I worked out the other day, as you do, that the death rates for any cancers is in countries without our safety net nhs skews the figures in a downward trend. Essentially, if you can't afford it, the prognosis is pants. We must have had at least £600k worth of treatment- phenomenal really. I like to think about one of my all time favourite TV series. Breaking bad. That really does show how 'ruthless' some health care systems are.
Don't get me started on how amazing the whole care was/is at every stage. Ask me anything you like and I mean anything about the whole 'what to expect'stuff.
I contacted Maggie cancer care the other week as I was having a 'wobbly'- phoned me back straight away. By the next day I had perked up, but I was really re assured that they were so good.

No doubt I will be in touch will them again (:.

Anyhows- keep cracking on. I will keep on with my 'Keith Richards health promotion plan' 

hilts