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 Milly,

Great to hear the milestone...may there be many more.

Lee

Yes he's on chemo . It's a new one now , to help it shrink 

fingers crossed  

Take Care . 

Hi Rusty1,

The chemo my husband had was FLOT. He noticed a difference by the second cycle. Most people on this forum noticed a reduction from having the chemo so as you say fingers crossed.

keeping the faith 

Milly

Hey Lee,

Thank you. How are you doing? Still think of you and hope you are finding your way. As I think I've said before my mum died of breast cancer aged 51 - I was 24 - a huge shock. I still miss her and feel cheated. However my mum said 'don't get bitter as bitterness affects you and no one else'. Your relationship with your dad was so special it's a huge loss. Take your time - it's early days. 
 

Big hugs and still keeping the faith for all of  us in our lives

Milly

Thanks Milly - therectge same words my Dad said many times. Unfortunately we don't have any control on whether the good ones go or not.

Taking one day at a time and trying to keep ourselves occupied as much as possible.

I had to go to an office to collect paperwork yesterday and it was opposite the hospital- those memories came flooding back-2 years of in and out of hospital for appointments, treatment, scans, chemo...

It's a place I don't want to visit for a long, long time.

Lee

Hey y'all, 

wow, what a little flurry xx and a newbie x

LEE- great to see you pop in xx. I too have been thinking about you and hoping you'd pop in. Little steps I guess with lots of tissues and amazing memories. Probably way to raw at the minute to even smile at memories, but at some point you'll find yourself smiling instead of balling when thinking about him. Little steps xx

MILLIE - yay- 1 year since the full monty...... with extra's- clapping emoji's x . I know how much you must be smiling. Looking at your guy and thinking what they have been through. That is why the Orange County trip was so important to me. To see my lovely Wally on those vomiting coasters and swimming in the water parks AFTER all his body has been through! ANDI - note it is possible. 17 months post original op for us.  We've just booked another....... don't ask. Relaxing (hopefully)one on a Greek island this time- I guess we are making the most of what we've got and there is nothing quite like OC to focus your mind on what is really important.

Alos, some time ago on here we were all talking about travel insurance. To go to America we used SAGA , 'only' cost us 450 for all of us. I was shocked, thought it would be far far more than that given where we were going and what we were doing! and what he has had done!

Millie - first sutton on sea, Orange County , now the isle of white! We love it. Ventnor in particular. That is the holiday we went on the week of diagnosis!

Rusty- keep that faith. Welcome to the club no one wants to be in, but hey, here we are. Sounds like your partner is in the early stages of treatment. Like Millie's husband mine also has FLOT pretty nuclear stuff, but good at what it does. My husbands swallow was pretty grim when he started, but after the 2 nd pain and gagging was much reduce and he was able to eat again, gagging for other reasons! by the 4 th it was like nothing was going on. 'Incurable' sounds pretty full on BUT there are several 'incurables' around on here- one who unbelievably was 'incurable', but is currently disease free!!!! and another who is 10 years into his incurable /palliative diagnosis/ treatment . 

take care you all and keep keeping the faith

Hilts xx

Hello  

Yes, Millie he did take FLOT, the first time around for 13 weeks . There was a difference as he was eating, we were going out for meals. But then he unfortunately started to feel blocked again. So we contaced his oncologist and she suggest the stent. He's had lots of pain since having it fitted, because as the tumours growing it's pressing against it causing him to feel pressure in the chest. He described this as like being suffocated. 
it's been awful for him . And I've felt helpless seeing him in pain. 
He is going to be taking his 2 nd chemo (camto) on Wednesday . 
I hope and pray it will start to shrink it .
Thank you for listening xx 

Take care ️

Hi Rusty1,

Hopefully the chemo will shrink the tumour and improve his swallowing, eating and ease the pain. Presumably the hospital will review the stent? We are hear to listen and we are a supportive bunch . We all have different stories. Some are patients, others family members. Just remember everyone is unique and some on this forum who have defied the odds. I have a friend with Bowel cancer who was given 6 months and is still on treatment 5 years on.

I do realise that one word - incurable - is absolutely devastating but sometimes it can be controlled. I wondered if you had both been given the opportunity to have a holistic assessment by the Upper GI team. We had one and this led to emotionally support for me as well as Kev (who didn't think he'd need it but has used it). I must say the team were very supportive and I accessed a local palliative care nurse during the time between Kev's extra operations. 

keeping the faith for everyone 

Milly

Thank you for the advice xx 

will look into it . 

Hiyah all,

How're you getting on Andi ? Scotland all go OK and CT scan all good ?

Hope everyone is OK too.

Thanks,

Redski.

Hiyah all,

How're you getting on Andi ? Scotland all go OK and CT scan all good ?

Hope everyone is OK too.

Thanks,

Redski.

Hi Redski

Good to hear from you - yes Scotland was amazing - very cold and wet but beautiful. Drove back from Perth yesterday - long 8 hrs as loads of traffic problems - but I did it. How are you?? Can you - or anyone - confirm if they are now able to eat bread post op?? I really miss it!!  I'm off to Turkey in 4 weeks - so getting a life back   Hope you are all still keeping the faith

Andi xx

You too Andi ! And, so pleased to hear Scotland was amazing for you. Well done for doing the 8 hour drive too, you must realise now that you've come a long way (and I don't mean in miles travelling home!) and is so good to hear from a fellow journey-er.

Yes, I can confirm I can eat bread ! Last time I had some was when I was down BFG's way having some mussels and they were served with bread to dip into the creamy, garlic sauce at the bottom of the pot. Have marmalade on toast at breakfast sometimes too.

Give it a go. Things improve over time, stick with it. My surgeon told me to push myself with my eating and I've been through some bumps pushing myself with discomfort and sickness sometimes eating larger portions etc but it all helps expand everything. And, the other week we went out for a curry on my birthday and I got through a couple of poppadoms, a chicken tikka balti, garlic naan, ice cream and two pints of cola and was OK ! He scoped me a week or so after in my check up and said that through pushing myself I've expanded my small intestine (I had a gastrectomy, not Ivor Lewis, so have no stomach at all!) from the size of a tennis racket grip diameter to the size of an inside trouser leg - which is why I'm able to eat more now !

Also he emphasised the importance of trying to get maximum calories from the smallest volume. And said that if I wake up in the middle of the night to have some ice cream ! The other day, I woke up at 2am for a wee and had a cornetto - haha ! All helps to put the weight back on post op !

This is soooo encouraging - I had mussels last week but didn't have the bread!!! I did try a curry but just a vegetable one and managed about half. I just hate it when I over eat and am sick - but I will keep trying to eat larger portions. Can't wait to eat a 'full' meal !! Will definitely try the midnight ice cream snack

Andi xx

I hated the sickness too, but it definitely helped me out with being able to eat more and getting more back to normal with it all Andi so give it a try, push yourself and if / when you do get sick just remember it's your stepping stone to your final destination ! 

Let me know how you get on with the midnight ice cream ! It's helped me put some weight back on !

Going ice cream shopping tomorrow xx

Hello I wanted to share a great book I got for People struggling to eat . It was from e bay only £10. 
it gives you recipes for all different types of foods even various of texture . 
SOFT FOODS FOR EASIER EATING . 
hope this helps . 
the soups are delicious .

Thank you - will have a look x

Hello y'all

Very quiet on here recently! Even me - now that is rare (:

Hope you are all keeping that faith xx

Andi47- from my experience- well his- it is really a case of trial an error. Really a case of eat it and see what happens! . For him Rice is an absolute no no, but pasta is okay- go figure we can't! He gets appalling dumping after rice. Bread ,he's half and half. Toast , 1 slice, early in the day is okay, but anything later than about 12, it 'hangs about' and he will then start coughing. Same with potatoes. Those 'complex carbs' are really tricky. 
what he does best with is meals with no ' cloggy' stuff. So on Saturday he had trout , mussels, small amount of veg, followed by 3 ! Scoops of ice cream. No dumping/ coughing. He will also go for things like steak, casseroles, curries. Usually protein heavy Doesn't cut the stuff up small , just as you normally would. Also if you're out for food, he sometimes goes for 2 starters, just about the right size.

Glad you made it away, once you've done it once and you managed, there will be no stopping you now xx

Take care and keep keeping that faith

Hilts x

Good to hear from you Hilts - and a huge thank you for the 'tips'!! I also can eat pasta but not rice but OK with potatoes!!  Haven't really tried bread as even a tiny bit - and I'm sick but will keep persevering!! Just love fresh bread!!  Hadn't even thought about steak or any 'dense' meat!! Will give it go now - just thought it would need chopping into mince!!  So good to hear other journeys. Keep keeping the faith everyone 

Andi xx

Hi Andi, Hilts and everyone 

So pleased to hear that you've made it on holiday to Scotland Andi! Great you've booked Turkey roo. We are just on our way home from the airport after two weeks in Sorrento to celebrate my 60th. We've had a fab time! 

Hilts interesting re carbs - I'll pass that on as no dumping this last two weeks and thinking about it he's had less carbs. He can eat bread but just smaller amounts. Limoncello was fine as were the local beers lol. Hospital appointment tomorrow for routine check up. How is your husbands cough as it sounds like it's less persistent fingers crossed. 

Still keeping the faith

Milly