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

Hilts fantastic to hear about the pizza, and the holiday, good for you, loving the attitude x

Hi, all, 

Glad we are all moving over and finding each other, just got to track down Doug now (: he is almost a year post op . And of course there is the amazing Davek who is 7 years (I think) into his non operational palliative.

i think 'palliative' is a word that seems to strike panic and horror into most. It took me a while to work it out. When I was a young student nurse (early 80's) that term didn't exist. What is now 'end of life' was called 'terminal'- it used to make me smile rather, as of course we are all terminal from the day we are born! Palliative effectively means 'treatment of a chronic condition', relief of symptoms when they play up. I thought many years ago it meant check out soon, but no that is 'end of life care'. Why am I talking about such things.........

Nothing is off limits I guess, if it is on our mind.

Yes Daisy- we really are in **** it mood. All that 'healthy living' claptrap is defo not in fashion in our house. I have said that I am now going to follow the 'Keith Richards health promotion plan' . I love the guy, I actually really do find him quite inspirational (: how on earth is he still here!
It seems if you try leading a so called healthy lifestyle then you still get *** like OC. I really am feeling like ' I am only here once and I am going to have fuuuuuun.

Guess what is on my mind now though......give up?
'what are the symptoms of reoccurrence'- wth, I mean, I have to have a word with myself sometimes. Of course I want concrete stats and symptoms, deep,down though I know that will not happen. Aaarrrg. It is on my mind I guess, because there is a little gap in there where the treatment 'worry' was , now I have created worries to fill the gap.......

My husband also felt a bit 'peckish' in the night last night- came down and has THREE weetabix  with sugar and maple syrup, then had the cheek to moan about wind........and regurge.

This 'predictive' text is sooooo annoying. For some reason it doesn't seem to like my lingo.(:

Time for some tea I think.....

Hi BFG,

Thanks for your reply. That's good to know that your oesophageal cancer is in the same lower part of the oesophagus. Yes each person is unique. This supportive chat group has helped especially as it can feel isolating in the best of times without the extra difficulties of COVID. My husband is due to have his second jab soon so this should be before the op. I've been baking and generally fattening up my husband. Fortunately he has been able to  eat but he definitely found it easier after the second cycle of FLOT. He did have nausea but medication and chewy ginger helped. We've done a 3 mile walk today after a zoom exercise class which is linked to  the NHS. 
 

Well done for getting this far and I hope your next  round of FLOT goes well. Sounds like it's just over a month since your op? 
 

Kindest regards

Milly 

Hi Daisy,

Thanks for your reply. I am pleased that your husband is responding well to the treatment and has gained weight. It is difficult to comprehend when the diagnosis is given and even weeks/months after it still feels unbelievable. My husband also looks well which we can only take as a positive. I think Hilts response to your question re palliative care is very helpful. I have a friend who has bowel cancer and was given 'months' but five years later is continuing to receive chemo. She has also agreed to clinical trials. She looks/feels well and before COVID enjoyed trips away and going about daily life.

I hope your husband continues to do well and my best wishes to you both.

Kindest regards,

Milly

Thanks, that's really good to know! 

Hi rayb

Glas to see you on the mend i was  worried you had gone missing , i haven't been on much as i am on the fed up bored part of my journey until shielding ends here on the 26th , i hope you are getting there as i see you have had a couple of issues , pneumonia is scary i had it in my teens , otherwise stick in and look forward to summer , take it easy.

regards

Douglas

Hi Doug, 

As the 'veteran' of this board, would you mind filling in the gaps for me. As you know he is now 16 weeks (or thereabouts) post op. He has been discharged by Dieticians & oncologists, just have the surgeon now. Soooo

1) No info as yet about going forward. All the Surgeons are looking for in his follow up is 'recovery from the surgery' . Fine , BUT my mind now has empty space to put new worries in,( why change a habit of a lifetime) what I really want to know is how they go about checking it has not come back..... in the Oesophagus (or what is left of it) or anywhere else. Sign , symptoms etc. What to look out for...

What do you get  in terms of follow up,if you don't mind me asking (cheeky sorry )

Any info greatfully received.

Thanx

Hilts

Hi Hilts

I get where you are coming from , my last contact with my surgical team was over seven  months ago and my oncologist was november i dont see him again until start of June , you do start to feel a bit forgotten after all the intense activity of chemo and the operation , unless you have any real concerns and feel recovery is not progressing well their is no real reason for any interim visits , you can speak to your cancer nurse about physio which is where i am currently on to try and build up muscle mass loss properly , any other questions i have been speaking to my GP, maggies centres are a good source of non clinical advice for loads of subjects , otherwise there is no reason for any follow up scans at this time i have been told, i am now 9 months post op and 77kg and reckon i will be 100% recovered by July , patience is the thing here , not pushing things to far , now shielding is coming to an end we will all have a bit more freedom , by the time you reach 6months recovery you should be seeing a big improvement in eating control , energy levels , mobility, and general well being , everyone i meet keeps telling me how well i look in comparison to a month after the operation when i looked like a corpse, i am sure you will both similiar things in coming months , so don't think you have been abandoned if you think something is not going right let your GP know ,  remember i am only a punter the same as everyone else on here but am always happy to give my take on the whole process , anyway keep in touch and take care , good to see Rayb posting again to.

Regards

Douglas 

Hi Doug, 

You are indeed a punter, but never an 'only'. You are ahead of most of us in this  OC game . and post useful stuff.

i am 'off ' on one at the moment. Obsessive thought cycles , but hey ho, why change a habit of a lifetime and I know it is all to do with 'keeping it going' for the last 9 months. I take a while to download and process info. Once I 'get' stuff then I move on ( to the next obsessive worry ) lol.

Husband it doing really well, weight back up to 90kgs. No problems with eating, apart from the odd over indulgence, but ever the scientist, he is conducting'experiments' to see what he can get away with.... I'll leave him to it.

What is really bothering me is how do we know if it is back, stuff to watch out for etc. We haven't been told anything, are you being scanned, scoped anything like that?
He doesn't really have any post op stuff going down, no real problems, just expected stuff. 
I am after the specialist nurses, no luck yet though... I will ask them my traditional' no flannel question', when I get to finally speak with them.

I am not bothered really by all the professionals disappearing off, it is a good sign, but I need my (current) obsession sorting out (:

take care

hilts

Hi Hilts 

if you remember the results of your pathology were the same or similiar to mine as in the cancer has been destroyed then there would be no point in any interim scans or tests until the post operative healing process has run its course , on the omopresol i am on 20mg once a day but i am also on the ad aspirin trial for 5 years , take it easy

regards

Douglas

Hi Hilts 

if you remember the results of your pathology were the same or similiar to mine as in the cancer has been destroyed then there would be no point in any interim scans or tests until the post operative healing process has run its course , on the omopresol i am on 20mg once a day but i am also on the ad aspirin trial for 5 years , take it easy

regards

Douglas

Thanx Doug.

I am seriously nutty today. Mad as a bag of wasps (:

I know all the 'rational' info and data, but of course I am having a non rational day, so won't belive anything I'm told LOL.

It will pass no doubt, but all the stress of last 9 months washing through.

take care

Hi all,

All this chat is helpful. Hilts I can get where you are coming from. I struggle with the uncertainty of it all. I,from experience, know nothing in life is certain but OC is not straightforward! My husband is very much on a 'need to know' basis which I think is right for him but I struggle and have 'googled' which can be terrifying so trying hard to stop this! You guys are so helpful. Doug thanks for all your advice as our 'mascot'. 
 

I have a question about questions! We get to 'meet the surgeon' on Thursday 15th April. We have no idea what type of surgery will be offered but GI nurse implied it's likely to be open surgery. Are there any specific questions that anyone feels we should ask? 

I hope you are continuing to recover RayB and you don't mind me joining in your post.

Kindest regards,

Mandy (aka Milly58)

Hi Milly58, 

Oh gosh I know. Questions never stop, or at least in my head!
My husband is exactly the same, everything is on a need to know, while me as the ex nurse - left the wards in about 1990! Read everything, the more gory the better - not (:, also referring everything  I read to my experiences of oesophagectomy's circa 1989).

What I can say is in hindsight, having had, well him, the surgery. the reality was nothing of the sort!!!

Talk about moving on big time!!. My guy had keyhole, but apparently that is a rare breed, the 2 other guys in his ward had open. Both styles are the same inside the bod. All of them with same post op gadgetry,same post op recovery regime- like being kicked out of bed the day after the op, about 2 nights in ICU. Most of the guy's on here are post 'shark attack' aka open. If I remember rightly, the all started on oral fluids on day 3 ish and purée food on day 4/5. That is a cracking treat ......... They all got kicked out of hospital between day 8-10

Ask away, really happy to answer anything.

I think I was particularly'nutty' / fizzy yesterday after Prince Philip popping off ): the guy had been around all my life and I did rather like the old goat(:, made me smile. End of an era sort of stuff.

Not as nutty today, so questions have calmed down.....for now.... no doubt they will rev up again when they feel like, but tbh I've been like this all my life and now finally (at 52) know how I 'operate' and more importantly that it will pass.

sooo

ask away

take care

Hilts

PS- Doug-Husband  is currently being 'recruited' to the aspirin trial. We are really umming and r'ing. Why ?because with all clinical trials about 50% are given placebo. We are having 'naughty' ideas about just buying some otc aspirin and keeping fingers x. Naughty.

Hi Hilts,

Hi Hilts,
 

Thanks for your reply and info. I wondered if you asked the surgeon any particular questions that aren't obvious - especially you being a ex nurse and all that!

I'm on the fattening the hubby regime! I love baking! The problem is I don't need to eat it! Also he is following an active recovery programme via Zoom through NHS. We are increasing our walks. Has anyone taken part in the Inspiratory Muscle Training (IMT) before surgery? 
 

Many thanks.

Mandy 

Hi Milly58, 

Do you know, we only asked the surgeon one question really....

' Can you get rid of it' ! LOL I genuinely think that was all we asked. It this curative or palliative?
He didn't really want to know anything else, and tbh nor did I.

We knew it was major surgery, but we didn't really need to know a lot, other than again, get rid of it.

I suppose we felt 'what choice do we have', just do whatever, again to get rid of it LOL, seems to be my favourite line tonight.

Yep, he did the inspiratory training. The gadget that you inhale with, increasing resistance. Did that about 3 times a day, working up to a 7. He was semi fit anyway, so he took to increasing his stamina. One of the best, free and probably most difficult was to walk up and down the stairs for 10 mins twice a day. Sounds easy, but after 1 minute I was a jibbering wreck (:, needing cake, but he cracked on and even got up to 15 mins- trust me it is a killer (:

Looking back I think it did make a huge difference, I can't say how exactly, but he was moving pretty well post op. 
Fatten him up - absolutely.  Mine had some food clogging , that put him off his food a bit, but, Once mine had his 2 nd pre op chemo, my oh my, there was no stopping him, total glutton.  Most of his weight loss has come after surgery, more so with the post op chemo nausea poor appetite. All husband and fellow travellers left hospital with something called a jejunostomy feeding tube. Goes into the gut and for 2 weeks post op he had 'delicious' vanilla feeds overnight. It keeps the calories going in. He hated that. They decided to stop overnight feeds after 2 weeks, but leave the tube in until after chemo finished. That came in very handy, as when appetite or fluids were really off, just shoved a pile of water and feed into that. He has lost about a stone in total most of it since the op, but he is now starting to put on again.

The tube was 'self removed' about 4 weeks ago. All the stitches had broken and he 'forgot ' to mention it, so it just slipped out. LOL.

He is just really starting to enjoy food again now.

we have decided in celebration and in 'f' it' mood to get ourselves a couple of tattoos.........never had one before, nor him, but after coming through this, why the heck not (: (:

Hi Hilts,

Thanks very much for this! The stairs is definitely something he could do. We both normally go to the gym 3 times a week (swimming and gym) but obviously this hasn't been open very much at all since last March and we won't risk going now as his op is scheduled for 4th May (not a Star Wars fan but May the fourth be with him!) He has his 2nd jab tomorrow so that's good.

Your husband is doing so well and you too! Defo go for a tattoo to celebrate and dance on the table at the first opportunity! 

Hi All

How is everyone ?

Well after another week long stint in hospital due to an infection I was back on track, then the 2nd vaccine, last Thurs knocked me back again! Who said this journey was a rollercoaster, was it you Hilts ?

Anyhow today was results day!!!!! Surgeon knows im his star pupil, so was very positive and even excited to tell me that the results back from Pathology were even better than he had expected.He was also impressed at my weight gain, back to pre op weight or as I call it my fighting weight lol. It was good to hear there is no spread including the piece of lung they took as it looked 'dodgy'

So now just the 2nd round of chemo (FLOT) to look forward to. Still have this horrendous cough which made me vomit (first time since op) Fri night. I made the decision to leave feeding bag off for that night and was more settled. Spoke to the dietician who was happy for me to do every other night from now on, playing it by ear for now, but best nights sleep ive had.

Next appointment 3 months.

So what do you all think?? Its took all day for it to sink in,weird feeling getting good news ; )

Yaaaaayyyyy, 

You're back. Fantastic news on the old histology- NO SPREAD.

i know how you feel ( sort of- the onlooker) , so much bad stuff, then bingo, it starts to turn upward, you almost feel like saying "ye whatever" as so much of the earlier stuff is pants. Weird. Also , I think we were bracing ourself for more doom n gloom, it's not like you don't belive them, but we were waiting for a BUT. Very strange when there isn't one.

I think infection, somewhere in the bod, is pretty usual after this sort of thing. Considering what is done. Husband had a bit of chest post op, but nothing major.

Now , the cough, I swear I am going to do for him myself (: (:. The night feeds certainly made it worse, but it is still ongoing, not as bad, but bad for me.......medics are not concerned, say all the bod takes months to settle down, have told him to eat less at meals... hahahaa. They say it is post nasal drip, there is certainly a lot of that....urg. But they have put him on a steroid inhaler, just to stop all the irritation vis a vis, will stop irritating me!!!
 

You have probably seen a few newbies joining the thread. That  will be me ' inviting' people over, I know it is your threat I have hijacked. I just thought that I see so many 'single' posts about OC that it would be good if we were all on same board, for better or for worse.

As for the weight, it was the 2 nd lot of FLOT that caused the loss, with rubbish appetite , nausea and smaller stomach. We used about a week of overnight feed, but just half of what we used before. It was just to take the 'pressure' off having to eat when feeling pants. His weight is stable again now at 89kgs (95kg at diagnosis and pre op). We found the jej tube quite useful for shoving water down, to help with dehydration after the chemo. Not prescribed, our own idea, but really did the trick.

yep, I think rollercoaster was something I coined, probably not original (:

We have been on several over the years, but one of the absolute worst ones was in Disney. A turtle like thing, that spun on its axis as well as going upside down, round and round, with all images/film on the wall of the ride. The car in front of us was having sick hosed off it !!! That should have been fair warning. It is far far worse that that Oblivion. Putting this process into the equation, husband reckon the turtle was worse!!!!

We are in the wtf just happened stage.(:

Our final decision on our celebration for getting through this is a new tattoo each- can't wait. We - well more me, i do like the old tats(: not the love/hate on the knuckles type though- LOL sorry if you have them!

take care

hilts

Hi RayB!

I'm thrilled to hear your good news! You are doing so well! I'm a newbie, my husband was diagnosed at the end of October and has completed the first 4 cycles of FLOT without any major incidents. We 'meet the surgeon' on Thursday. Op scheduled for 4th May. I've  been having a few 'wobbles' so your news has really cheered me up and it's encouraging re your weight gain too.

Hilts, your post reminded me of inadvertently going on the dragons in Harry Potter land in Orlando. I too knew it wasn't a good sign when they hosed it down and sent it round to dry. Happy days! I couldn't touch the butter beer! 
 

Best wishes for a continued recovery.

Mandy (aka Milly58)

It's Nice to see people coming out the other side of this.. such a scary disease.

Something I have noticed since October is an overwhelming tiredness. Is this normal? Would this be because of the cancer or something else?

Got my dates for my PET scan and EUS today. Looks like I will be meeting the specialist on the 23rd for staging and treatment plan. It almost feels like a relief that I will get answers rather than a worry about the staging. If that makes sense?