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osophagus cancer diagnosis

1 Apr 2021 23:00 in response to Daisy71

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



 

 

osophagus cancer diagnosis

2 Apr 2021 08:16 in response to Milly58

Thanks, that's really good to know! 

osophagus cancer diagnosis

6 Apr 2021 20:23 in response to RayB

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

osophagus cancer diagnosis

8 Apr 2021 20:46 in response to dooggreg

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

 

 

osophagus cancer diagnosis

8 Apr 2021 22:59 in response to 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 

osophagus cancer diagnosis

9 Apr 2021 16:18 in response to dooggreg

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

osophagus cancer diagnosis

9 Apr 2021 16:34 in response to RayB

Good luck - it is a very long hard road but should be worth it.  Keep strong.

osophagus cancer diagnosis

9 Apr 2021 17:26 in response to corrinesue1

Wow, 

I swear us oesophageal club people must be rabbits!!!
There are more and increasing by the day, hour even!
welcome Corrinesue1.

I really really didn't realise how 'common' we are until my husband ,aged56, diagnosed last summer out of the blue. You never hear much about OC and I thought it was quite rare, clearly NOT(:

You are out the other side too then.  We have just finished 2 weeks ago. 
Now (as you can probably see) I am obsessed with it coming back, I want to know all the signs and symptoms, wether he will be scanned, scoped etc etc. Aaarrrrgggg (:

Also another query for the board ( oh my I am seriously buzzing!) - what dose of omeprazole are y'all on. He's on 40mgs, my mum is a higher dose than that about 80mgs and she is nowhere near his level of 'illness'- she has 'silent reflux'

All ( in depth) info would be helpful.

thanx

Hilts

 

osophagus cancer diagnosis

9 Apr 2021 18:14 in response to 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

 

osophagus cancer diagnosis

9 Apr 2021 19:47 in response to dooggreg

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

osophagus cancer diagnosis

10 Apr 2021 15:10 in response to Hilts

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)


 

 

 

osophagus cancer diagnosis

10 Apr 2021 16:42 in response to 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.

osophagus cancer diagnosis

10 Apr 2021 19:56 in response to Hilts

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 

 

 

 

osophagus cancer diagnosis

10 Apr 2021 21:37 in response to Milly58

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 (: (:

 

 

osophagus cancer diagnosis

10 Apr 2021 22:09 in response to Hilts

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!