Hi Milly

That's useful to know - may look into the bed. I'm finding it harder to get over the last surgery - becoming a recluse and very down. Usually very upbeat but just so tired of being in pain now. Don't know if anyone else has had problems after a hernia operation - caused by the oesophageal last year. Where they've 'put my insides back in their right places' - apparently hundreds of stitches ( good old robot) - my bowel has gone to sleep - so uncomfortable- just want to sleep. Sorry I'm a misery - any tips in constipation. 
 

Finding it hard to keep the faith!!

Andi xx

Hi Andi,

I'm sorry to hear that you are feeling down but it is understandable after all you've been through. This time of year can be difficult too.  The bed was definitely worth buying as you can raise the top and bottom too. Useful when I broke my ankle!

Recovery can be a vicious circle as moving about will help your bowels wake up but because you feel in pain it makes it hard. I think that I've said before that my husband is part of the NHS active recovery group. They still do zoom and it is suitable for most people. Also we had psychological help via NHS but there is also Maggies. Have you got a specialist nurse that yiu could talk too? Also you could contact the upper gi dietician as they should be able to advise to help with constipation too. 

Please don't suffer in silence and just put on a brave face as it won't help in the long term - I know that from past experiences. 

I hope it helps to know we care and although we can't know exactly what you feel - we do get it's difficult. You just need some support to get through this hoop and then you will start to feel better and more positive. 

keeping the faith still for everyone 

Milly

Hey Andi 47

Bless you- I second everything MIllie has said.

you know- it's okay to feel pee'd off  and this time of the year is the WORST. Everyone going on "it's Xmas" etc, but I think most people are faking it! and feel just as blue.

However- after all you've been through you have some added extra's in the blue mood equation. Although it may not be nice, completely expected. Husband used Maggies, then McMillan, which helped , and of course the great healer is time.

You are finding it harder this time, because it's your 2nd long spell on the table! Also general anaesthetics are great ones for causing a period of the blues, up to weeks after ( that will be all those barbiturates and opiates) 

As for the 'other end' my gran swore by prune juice LOL, but there is so much out there to get the problem solved. See GP. I am a 'lover' of old fashioned senna, available everywhere. Husband used Senna to get rid and movicol to keep getting rid- sorry this is getting 'graphic' now , but I would avoid the 'bulk' forming ones given you have less space in the guts(: fybogel comes to mind- right enough of that from me.

As for the bed- We are still in original bed, but he uses one of those triangle pillow wedges, which seems to do the job- but electric beds are the business, so go for it id within your means .

Forgot to say my husband didn't have Ivor ( the engine) Lewis, he had it all done by keyhole- just because keyhole was his surgeon 'thing'- but same on the inside I guess- he was on the table 10 hours, as expected.in fact done on the  17 th it will be 2 years exactly- he was chucked out on Xmas eve.

Anyway time for some more chocs

keeping the faith 

hilts

Hi lovely's, it's Tuesday and we had the phone call as to whether the cancer had spread (as seen from the staging lap last Tue) I'm so happy to say it hasn't, I asked grade and stage but said they won't know till the operation, So I'm taking that that they'll do the op, we have an appointment next Monday to talk  I'm still scared and know I should get my big girls knickers on, while he's in hospital I'm fine as know he's getting looked after but then it's down to me to do it all and unlike you hilts I'm no nurse!  I'll just have to get on with it I guess plus you're all here x

Sorry Andy1947 that you're not so good, I've obviously got no answers cos this cancer is all new to me but just want to say hope you feel better soon, take care, 

Thanks all Xx

Hi Hilts

Thank you once again for your hints and tips - it's so good to know there are others with the same problems. I really need to get some 'get up and go' - have been bathing in Epsom salts - but need something more - and every day!! I WILL FEEL BETTER - nearly Christmas 

Andi xx

Hi Andi, please always remember how blessed you are to be successfully out the other side of our diagnosis … your current situation is never a full stop and just a hyphen to the next chapter ! Keep going, keep pushing !

Hi Sue,

That's the best news possible. The surgeon will say it as it is but they don't offer this operation lightly and as you have seen on here people do come out the other side. 

Try not to anticipate as everyone is an individual- we found the specialist upper gi team and dietitian very helpful. There are also support groups if you feel this will help you. We had to cope on our own because of COVID and with chemo it suppressed Kev's immune system. I also broke my ankle just before his post op chemo! We even managed a week away inbetween chemo and just before his op as self catering had opened up!'It's not an easy journey and we understand your fears but take heart that people can get through it. This forum helped and continues to help me. Who did I tell about our latest scare? You guys - a safe, non judgemental group of fellow travellers as Hilts would say.

keeping the faith

Milly 
 

Thanks Milly, yes good news about it's not spread but why do I feel worse today than before,  I'm just finding it so hard, Ocupatinal Therapy phoned me up today, a lovely girl,, then I wrote down all I wanted to ask when we go on Monday, I had another look at the stomach cancer pamphlet they sent us at the end it says 1 in 3 are not cured that made me think.

Can I ask everyone if you have the cancer in your Oesophagus is that all you have removed or some of your stomach as well, I'm finding that hard to understand, I don't know if my husband will have just his stomach removed or some Oesophagus. 

Redski I know you had your stomach removed, how are you eating and managing life now. I'm so glad I can ask these questions it would be really hard without you all.

Thanks all of you for been there xx

Hi Sue,

Feel free to ask anything- we understand how overwhelming all of this is for you both. My husband was a need to know kind of guy so I was the 'investigator'. He had half his oesophagus and the top third of his stomach removed as his was junctionsl cancer. Try not to focus on statistics there are people on here who have beaten all the odds.  It is a massive operation but they are very skilled. 

Redski is definitely a good source of information for you as he has had a total gastrectomy. Your husband will loose weight. My husband managed to gain some before he had the operation as he wasn't overweight when he was diagnosed. They give you high calorie feeds and also liquid products to boost calories after the operation. You are fortunate not to have a long wait as once things kick I and many on here felt better as something was being done. As I've said we had over 3 months wait from diagnosis to starting treatment. Having said that the NHS are brilliant and the staff are very dedicated. 

keeping the faith 

Milly