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 Cautiously Optimistic !

Good to hear your Hubby is doing well and moving nicely out the other side of the op, well done !

My surgeon didn't allow anything by mouth for 5 days post op and I just remember dreaming about glasses of ice cold cola in my sleep as I'd had enough of sucking on wet sponges on sticks to quench my thirst !

When day 6 rolled around and I was allowed ice cream I remember being on FaceTime to my Wife as it arrived and breaking down in tears on the phone to her as it tasted so amazing to finally be able to eat something, after so long - it was amazing yet something I'd taken for granted all my life. Those 5 days post op made me think and appreciate a lot of things !

I was in hospital just shy of 10 days I think, and remember that they wouldn't discharge me until I'd had a bowl movement - and I was desperate to get home to see my Wife and kids (it was mid 2021 and covid restrictions meant no visitors @ hospital) and being clogged up from all the pain killers was preventing me getting home any quicker haha !

My Wife changed all my dressing and they were pretty gruesome to start with - she was a trooper as I looked like an extra from the beach landing scene at the start of Saving Private Ryan to start with ... and remember her calling the MacMillan Helpline a few times as the dressings were so bad - but she trooped on through and here we are 7+ months later with a beautifully healed scar !

I had the follow up FLOT and it was about 4-6 weeks post surgery and was the absolute, without doubt the hardest thing I have ever been through in my entire life. It made the pre op stuff and the op itself seem like a walk in the park. It absolutely kicked my derriere with nausea, vomiting, feeling toxic in my own skin ... it felt like I had been part of the Salisbury, novichok Russian poisoning.

I remember saying to my Wife after the first post op cycle, I don't know how I can do another 3 of these. But through her support and encouragement and all the people in this thread too, I limped on through and made it out the other side thankfully !

My advice would be, it's blooming tough so manage your expectations and support your hubby through it if he chooses to do it, but id take whatever they offer to minimise any chances of having to go through it all again.

Encourage him that life can be good again the other side of it all. Last Saturday night my Wife and I went on our first date night, no kids for in as long as I can remember. Lovely restaurant and I managed to eat a filet steak, chips with peppercorn sauce and a cream filled meringue with fruit coulis for dessert and two mojitos ! Not bad for someone that's had a total gastrectomy.

Yah, crazy here in Surrey too ... snow this morning and now blue skies and sunshine this arvo !

Hilts, I had a scan yesterday morning too and saw my surgeon in the afternoon and happy to hear that no dodgy cells present currently either !

Endoscopy in a few weeks time so he can check out his handiwork by the sounds of it too.

Thanks everyone for the encouragement here and support, hope you're all OK and trucking on thru our respective journeys.

Ello Cautiously optimistic and y 'all,

Yep, got caught in a right 'blizzard' this afternoon!! They weird thing being I was looking at the forecast for Florida- where we are finally off to next week- 80deg V 32 deg. 
 In terms of your husband coming home and dressing etc. mine was chucked out day 8 or 9 BUT it was Xmas eve and he had it all by keyhole, so he had no dressings either, just 4 bullet hole wounds., which were 'glued' not stitched and were all nice and dry.He had a very small dressing over his abdominal feeding tube.  His chest drain hole had a tiny piece of gauze over it. But by day 4 it had scabbed nicely, so I took it off, It really does depend on what the wounds look like, they may not need dressing at all, especially I'd they are 'nice and crusty' . If he does have any dressing, they will be very simple, just pull the old off and stick on new, bathing wounds etc stopped donkeys years ago. I am an ex nurse ( left wards 1990 ish) and we were moving then to leaving wounds alone, not dressing them every day unless there was good reason and never bathing them, theory being less fiddling, sooner mended. Unlikely to need district nurses as unlikely to be anything complicated if at all. If I think back to my c section wound, I had no dressing at all after about 3 days.

As for the post op chemo, as Redski says about 6 ish weeks. and yes, husband found it all pretty grim, as all the effects are cumulative, so the body really is well miffed by this point, BUT most on here have muddled through the glue and come out the other side and worth that extra 'pain' for the gain. Just think though 8 weeks and that's it, done, finito. Rollercoaster car back at base .

You will certainly get there and no doubt will sit down, look at each other and think WTF just happened! If it's any consolation we still are doing that!
keep keeping that faith

Hilts 

Hello everyone,

Sorry but this isn't an exact response but not long out of hospital after surgery. Added complications with lungs collapsing and constantly wretching and coughing up phlegm every day, episodes last from 30 minutes to 2 hours last night. I've only

managed one meal in nearly 3 days and just can't stomach anything. Did or has this happened to anyone else? Does it take long to get better?

the added issue of low SATs and inability to walk for, finding things tough and may have lost my GF over this as I have some bad days. 
 

Just didn't know where else to turn too,

It's given me some strength to see those who have been through similar.

Brotherhood

Hi Brotherhood

Ibhad the same - and honestly - one day you go to bed and suddenly realise 'I haven't coughed or been sick today'. It may come back occasionally but it gets less frequent

Keep with it 

Andi xx

Hi

just wondering if anyone has any experience of a persistent cough post surgery.

my Husband is now 8 weeks post surgery. Doing well really, but has developed 3 weeks ago a persistent cough, very annoying.

anyone else had this?

tracy

Glad to hear you're doing OK Andi !

Hi Tracy, [@Hilts]‍ is our resident expert on this !

Her Hubby had a mystery persistent cough post surgery and investigations etc to get it sorted so I've no doubt she will have bags of advice and knowledge on it to share with you !

Thank you Redski - it a long and slow process - but getting there. Hope you are OK x

Thank you Andi,

It is early days, I hope I get to that stage sooner rather than later. 
 

Anyone have any tips for mental health while I cannot walk more than 10 yards without being sick? At 30 it's really playing on my mind that I can't do anything anymore really, not to sound ungrateful to be alive folks sorry. 
 

Brotherhood

Yes, just focus on and remember that your current situation is not your forever situation fella.

Like Andi says, one day you'll realise how much progress you've made without knowing and feeling it until that time.

Rest and sleep is such a good healer too, don't push yourself too hard, rest a lot - it really helps.

I suffered after my op with foamy phlegm coming back up too but it's gone now and passes - you will get there, just keep walking forwards through your journey and stay positive !

Youre post op with all your bad cells removed in surgery, you've much to be grateful for, even if you are feeling a bit battered, bruised and through the mill currently !

Yes, just focus on and remember that your current situation is not your forever situation fella.

Like Andi says, one day you'll realise how much progress you've made without knowing and feeling it until that time.

Rest and sleep is such a good healer too, don't push yourself too hard, rest a lot - it really helps.

I suffered after my op with foamy phlegm coming back up too but it's gone now and passes - you will get there, just keep walking forwards through your journey and stay positive !

Youre post op with all your bad cells removed in surgery, you've much to be grateful for, even if you are feeling a bit battered, bruised and through the mill currently !