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 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? 

Hi Ruth & Millie.

Millie- in my experience wobbles are compulsory (:. It is an incredibly weird surreal experience. I still don't feel it is 'real'. Even after going through 8 months of treatment. I even worry to myself some days why I am NOT feeling emotional. Why do I feel normal. We sit down of an evening and I think what just happened- was it real. Then other days I am sooooo angry. I have no idea why I feel the way I do?, is it normal or not.... who knows. I have started to 'go with it' rather than worrying about the in's n outs. I feel the way I do , because I do (: 

Ruth- As you know I am not the victim, just the onlooker. Tiredness is something I can really comment on (:. I've always been what may be called n 'insomniac', I am only thus because the world functions on. 9-5 life. I can always sleep for 8-12 hours, but I would prefer that to be starting at about 4am.....

Anyway , the reason for tiredness, the answer is very easy = who knows (: That is not meant to be flippant, but it could be cancer related or not. How to put this politely- getting older - eke I said it, I am 52 you see and I would say that is more to do with it than anything else. Also look at the last year we've all had, life effectively was cancelled. I would say that a lot of my tiredness is down to boredom and ennui. He gets tired, but he is now post treatment and just 'goes with it'.

It is kinda odd, that everything felt a little better once we had all the staging and plan. Something quantifiable and firm, and end to aim for and tick off. So fingers x. 
 

Daisy71- c'mmon over. 
keeping the faith- hilts

Hi Ruth,

Like Hilts Im an 'onlooker' . It's hard to know re the tiredness as it can be caused by many other things. One thing I will say is that your staging is moving at speed which is good. My husband was diagnosed at the end of October and started his chemo on 29th January so a long time, especially during lockdown. However the staff and care has been very good and thank goodness for the NHS! It is better once you have a plan and something to focus on. I wish I could say/know more but I hope it helps to know others are going through similar and care.
 

Hilts thank you re 'wobbles'. As you know I've experienced very difficult situations before but my husband was always there  to support and this is different. I'm trying to stop researching as much. At least we are able to get out a bit more now before his op. He's tried the stairs and managed 3 mins! Work in progress but thanks for the advice. Off out for a walk .... 

Mandy 

Thanks Millie and Hilts,

I really do appreciate your insights into all this. It has made things easier knowing that we can all support each other as we go through it. 

With the tiredness, you could be right Hilts, I went from a super active and busy lifestyle pre covid to a much more relaxed one. As well as not being able to see friends and family or my partner. This definitely could have brought on some tiredness.

Had my PET scan yesterday, all went well, they even found a vein first time, which is unheard of for me. :) EUS on Monday, which I'm not looking forward to, it will be my 3rd endoscopy in 4 weeks but I guess I just need to get used to them. 

Hope all is going well for you two ladies, and again thank you for the support. It's amazing how talking to strangers is sometimes easier.

Rx

Thanks Millie and Hilts,

I really do appreciate your insights into all this. It has made things easier knowing that we can all support each other as we go through it. 

With the tiredness, you could be right Hilts, I went from a super active and busy lifestyle pre covid to a much more relaxed one. As well as not being able to see friends and family or my partner. This definitely could have brought on some tiredness.

Had my PET scan yesterday, all went well, they even found a vein first time, which is unheard of for me. :) EUS on Monday, which I'm not looking forward to, it will be my 3rd endoscopy in 4 weeks but I guess I just need to get used to them. 

Hope all is going well for you two ladies, and again thank you for the support. It's amazing how talking to strangers is sometimes easier.

Rx

Hi Ruth,

I agree, chatting to others who have a shared experience does help. Pleased the PET scan went well. My husband was 'sedated' for the ultrasound EUS which he found better. I thought we'd learnt enough new terminology because of COVID - clearly not! 
 

Mandy (aka Milly)
 

I know it's funny. I have learned so many new words and procedures the last couple of weeks. 

I'm a bit of a science geek to be honest and only for my career took a different path in my early twenties I always had the want to be a pharmacologist. So if I'm honest I am finding the whole think fascinating, scarey absolutely but also finding out what they can do now is great. 

LOL Millie, I am an ex - Nurse and I have learnt so much new terminology!!!
One thing for sure though, I would never have an endoscopy without sedation- if I'm ever offered that I always take it (:

We went yesterday to see the Oncologist- We/he was discharged .....yippee, BUT there is always one, for once it is for a good reason.. a clinical trial offer. The Aspirin one.  They spent what felt like ages discussing the bio chemistry of Aspirin, him talking about making it as a student and how he will know if he is taking placebo etc. At this point I 'discharged'myself and went for much need retail therapy (: fascinating stuff though, looking at the inflammatory process and cancer cells. I wonder if eventually the key to killing cancer will be found from nature.

I have decided he needs to get back to work soon, when I can home this afternoon he is watching Zulu!!! I do love it at the end when they both salute 'fellow braves' (:

What tomorrow I wonder (:

take care

Hilts

Hilts that is great news. Delighted to hear your hubbie has been discharged. I'd imagine that is a huge weight lifted.

Hope you treated yourself to some lovely treats on your retail therapy trip. From the sounds of it it was definitely well deserved. :) 

Hi all,

Firstly, great news Hilts! You definitely seem to be on a quick route. Don't blame you doing some retail therapy - you definitely deserve it. 

We have been to meet the surgeon this afternoon. Apparently two will be performing the operation planned for 4th May. A lot to take in despite my research. 

RayB like you it's likely he won't be allowed visitors so any tips on what to take in would be appreciated. Doogreg did you have open surgery too? 

#keeping the faith Hilts 

Mandy or Milly or maybe Molly

Hi, 

still under the surgeons though, but next seeing them in June,

I don't think we asked the surgeons very much - apart from ' get rid' (:

I think it was useful NOT knowing the inns and outs as we felt 'what choice did we have' !

I think or at least hope that you take some comfort/reassurance from us lot on here, Knowing that there are (quite a few of us) are out the other side, in reasonable shape. 
Ask away though for what is that saying ' the lived experience' LOL

I didn't buy much LOL, but I just liked wandering around town, with quite a lot of other humans about, sun was shining and the coffee was hot........a good start (:

hilts

Hi,

It definitely helps knowing that others have come through the op and available for advice. Thanks.

Pleased that you enjoyed your new bit of freedom and it will be interesting to hear how trial progresses. 

Mandy

Hi Milly and everyone else reading 

yes i had the full operation but it was no problem at all , i have been posting my progress since my operation last june and i am getting back to normal now with not really any dramas to report , as i have said to others just ask about anything , its always good to hear from someone who is as far down the recovery route as me and how to deal with any hiccups which buy rhe way are also  a side effect of the procedure , anyway ask away and take care.

Regards 

Douglas

Hi Doug,

So glad to that hear life returning to normal for you. I had my EUS today. Have to say was a little uncomfortable and I got very emotional at the end. Which I felt embarrassed about but not sure many people noticed if any.

They can see the cancer in lining but not too deep which is a good thing. They may have caught it early. They did say they noticed an ulcer at my ogj. But they couldn't determine yet if it was cancer or just an ulcer.

That's all my diagnosis tests done now, I will go back to hospital on Friday. They have said I am allowed bring someone with me for this. I kinda want to go on my own but my friends and family are insisting that I bring someone with me. 

I don't like a bug fuss made. I like to process things and then talk to ones I love with the correct facts and knowledge. I really hate worrying or upsetting them.

Hi Ruth 

You are just at the start of your journey and the next few months will usually  be filled with tests and teratment in pretty quick succession , i have about 30 odd posts going back to last summer about my experiences and even have done reviews on google about my treatment , many of the others who post on here have been through the same scenarios since then  , i started my journey about a year ago so i would expect you to be in the same position as i am today this time next year , i am lucky enough to be able to put a very positive spin on the whole thing but only because of the first class treatment i have recieved from the NHS , trust me a year line passes quickly and i often wonder what the fuss was all about , i am a very happy bunny and have been throughout my journey and hope yours will be the same if i can help at any time with anything you are unsure about just ask , take care and keep in touch

regards

Douglas