Partner just diagnosed

Hi redandrea71

Sounds like your partner had a pretty rough time of it but glad they are back on track now.

I had my last chemo on Nov 7th and my op was Jan 5th so just under 2 months .

It went really well and they got all the cancer out and the histology report was good as well.

Eating and drinking a bit of a challenge as they removed my stomach but that will get better in time. The post op chemo starts March 7th same as your partner and it will be 4 more rounds that will hopefully kill off any remaining microscopic cancer cells.

I will be monitored on a new trial for 3 years so if it comes back they can give me more treatment.

I really hope your partner's chemo can be finished before your son's exams as the whole process is very stressful and worrying for everyone. I wish you all the very best.

Best wishes

Dean

Great to hear you are doing so well, both for you and your family but also hearing positive accounts gives hope and optimism!

Someone has mentioned discussing some trial with my partner, so the trial that's been mentioned to him, might be the same as has been mentioned to you!

My partners chemo definitely won't be done before our son's exams - his 4th round pre-op ends on 7th March. We've been told he'll then have 6-8 weeks rest before the op (a full stomach removal seems to be the most likely option for him to).

I'm hoping he'll be admitted for the op around the 24th/25th April so that by the time of our son's first exam on 10th May, he might be about ready to be discharged  all going to plan!

Do you mind me asking what T Size your tumour was? 

Hope you get used to the different eating & drinking habits - this will be a learning curve for my partner as well, ironically I'm the one who has the smaller appetite preferring to snack smaller amounts more often whereas my partner used to enjoy large meals, 3-4 rounds of bread, would finish off my leftovers and have a pudding to follow!

Though right now, I think he'll be happy to just taste something different than the occasional starburst sweets he's chewing for a bit of flavour!

I don't think my partner asked for the details of the trial that was mentioned to him, but I'll post it on here when I know more - see if it's the same as that mentioned to you.

Sorry to hear about your partner Samantha, hope his recovery is getting better!

Sounds like my partner has the same chemo - he also comes home with a 4th drug on slow release for 24 hours that's removed by a district nurse the following day.

He's felt a little sick, had a sore mouth, felt dizzy and has had pins and needles in his fingertips but has otherwise been ok with the chemo so far (fingers crossed).

He did get a gut infection called C-Diff which we don't know if he got as a result of the chemo (as it is linked to chemo) or if he caught in hospital whilst awaiting a feeding line being fitted when he stopped being able to eat or drink when the tumour got too large.

Hope your partners prognosis is good post-op and post 2nd set of chemo xx

Thanks JPM for sharing your experience of Salford Royal - we'd read it's one of Europe's leading hospitals for this kind of cancer & are so grateful we live nearby!

My partner is under R Chaparala - hopefully he'll be as good as you found Mrs Farooq to be. 

My partner is set to have either the same operation as your husband had or a full stomach removal (they've said they'll know which one when they explore the effects the first 4 chemo treatments).

I'm not sure if there's any such thing as "optimal" condition for the operation but from the surgery "school" session we attended my partner can't really do anything else to prep than he was already doing before this happened - he doesn't smoke so doesn't need to quit/cut down; he rarely drank and hasn't since diagnosis, so again doesn't need to cut down, he exercises regularly and his diet was reasonably good (it's limited to the liquid "feeds" he has via the feeding tube now, but he's hardly lost any weight and is a good weight for his height).

I know recovery is different for everyone, but has your partner returned to work yet (if he worked beforehand that is)? Not working is frustrating my partner - he only stopped due to his job not really being suitable in light of all the equipment needed for the liquid feeds plus his self consciousness about his appearance with the tubes up his nose and stuck to his face - good to hear you're feeling like life is getting back to some normality though! x

Hi My husband is now retired ..He turned 66 this month ..He hasn’t worked i since May ‘22 after he collapsed due to weakness from a three stone weight loss during a lengthy 6 month diagnostic process at the Royal Bolton Hospital ( long story !! )  and subsequently required a JEJ feeding line fitted into his duodenum to help with nutritional assistance ..His  tumour was totally blocking the junction between his oesophagus and stomach .This was an absolute godsend  at the time and thank goodness Salford Royal intervened ! He had the JEJ for twelve months in total ..it was very beneficial post surgery too as we could administer top up feeds whilst he was adjusting to his little and often routine ..He’s now regained the majority of his weight loss .

He had a fitness test prior to the surgery to test the strength of his heart and lungs and he was given a lung expander device and exercises to do three times a day to help strengthen his lungs  ..This helps with the lung inflation after deflation during the surgery .

Its definitely been life changing for him in a lot of ways ..He has several treatment related issues he’s learning to live with , but that’s just him …He was a very fit and active man prior to all this so it’s been a time of acceptance for him to realise  he’s not the man he was before but life goes on , albeit differently and we’re very grateful for everything that has been done for him .

regards J 

Hello ,

 I am new to this and at much the same stage .

My experience is that exactly yours as the endoscope didn't meet much resistance- and as it seems that as this type of cancer only shows once our gullet is blocked that I have to repeat " no problem swallowing " to every medic I meet. 

And at these stages we get a hinge amount of info we aren't prepared for - so accompany your partner to all appts you can and take notes if you can.

And ask as it's our health - so I eventually asked if my stomach / gullet valve was affected " yes , that's where the cancer is " said the lead surgeon . So I waited 4 weeks to be that bold.

Chemo - seems very fine tuned and I'm overnight 4 times a fortnight apart starting in a few weeks.
There is an option of a second night - now that may sound odd as we all want to be home - but if you are having strong side effects being in hosp and getting immediate help is better than being at home and trying to find help.

on side effects of chemo -my fantastic oncologist said for mouth ulcers bicarbonate of soda in a pint glass in the fridge is a good mouth wash.

And lastly , love the things you have rather than regret the things you don't x

Hi

My diagnosis was T3 N1 M0 and was near oesophagal junction.

When it came to the op the surgeon said total gastrectomy (stomach removal) was the best option.

It all went well with all cancer removed and only 1 of 68 lymph nodes removed had sign of cancer. Histology was good as well meaning no residual cancer so basically the post op chemo Is to just make sure I can hopefully get the all clear

The trial I have been selected for us called SARONG. It has two groups one of which gives you 2 scans per year for 3 years . Luckily I'm in this group and my surgeon explained it runs for the 3 years as the cancer could come back during this time. So if it does they can provide more treatment. After the 3 years if you are clear the chances of it returning is very low.

So if it's the same trial you have been offered do it. You only have to fill in a few forms online and if you get into the intensive group like me you will be monitored very well. So if anything does come back they will be able to catch it early which is very important

Your husband will get some taste back after chemo but yes it's horrible

Best wishes

Dean

There's definitely a huge amount of information to process (and equipment, medication etc)!

It can feel overwhelming at times, I've been attending all the appointments when any information is given and making notes as it's easy to forget things after.

My partner is having his chemo every fortnight x 4 rounds pre-op (3 completed now) FLOT (the initials of each drug).

He's not staying in overnight though - he's in about 4 hours/ 4.5 hours, then comes home with a bottle going in via his Hickman line for the following 24 hours - then a district nurse comes to remove it and flush the line the next day.

Maybe it varies depending on area live in, proximity to hospital, age, general health etc.

He was back in Christies 4 days after his 1st chemo for about 12 days but that was due to the tumour having grown and him no longer being able to eat/drink.

By the time they realised that was why he couldn't keep anything down it was Friday afternoon so the feeding tube couldn't be put in until the Monday.

He then caught an infection so was kept in plus had to be trained on how to use the feeding tube for both the nutrients and all medications in liquid form as he couldn't keep any tablets down either.

But apart from having to go back in over the weekend a couple of weeks ago when our dogs paw pulled the tube out, he hasn't had to stay in.

It's good knowing how responsive they are though and how quickly they'll admit if needed.

His team have prescribed him 2 different mouthwashes for the sore mouth and they seem to be helping - good luck with your journey - hope your 1st round (and the rest) goes ok xx