Oesophageal Patients Association
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Post op .....3 months !

Hi all !

Not posted for a while , I’ve been sooo low and suffered from stress myself recently. Even though everyone said how unbelievably hard this all is and how “ not to expect anything as near to “normal “, for at least 12-18 months , you never really comprehend what they mean .....but OMG , I naively thought that pre -op Chemo and the Ivor Lewis itself , was the hard part! but no one can ever , ever prepare you or tell you what to really expect afterwards.

I never thought I could feel as heartbroken and helpless as I have these last few months. Tony looked just the same, in fact he tolerated the first Chemo and surgery amazingly....but now , I long for the man I once had and I’m dreadfully sad to see him go through how he is now. He’s tiny , like everyone I know ...but 12stone 2 down to 9st 8 is awful. He is about to have his 5th “ stretch” since Sept ! because the stricture constantly shrinks ! Last time back to 1mm ! If he’s not bringing up bile and food that’s stuck then it’s the damn “dumping syndrome “ !!!!

And now just to add to it during his last admission he has “dropped foot” , when WILL it ever end ?????!!! I never thought it would be this bad , and all the time he thankfully stays positive while I try my hardest to keep smiling and not feel resentful of other couples out doing “normal “things like eating and drinking and having a good time ....especially this time of year . I feel awful for feeling like that ...but I can’t help it . It’s almost like grieving but then I feel guilty and stupid for complaining when it could be even worse !!

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My husband is still unable to talk about the chemo, it is hard to see someone that you love so much being so ill (my husband also has a serious long term illness so I have seen both sides). These things like "eating and drinking and having a good time" will come back but it will be different. Yes, it is an understandable grief but you are both still here.

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Sorry, I should have stated that I do understand exactly how you are feeling, I do feel the same about my husband who has been ill a lot. including today I just remind myself how much I love them.

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My husband is 11 months post operation. I completely understand your "grieving" process. Know that you are definitely entitled to have these feelings even though it "could be worse." The whole process is so hard to watch and half the time I wished it was me, because it felt like the helplessness and powerlessness was worse. We have not experienced the shrinking and stretching issues, but I can see how it could be very disheartening. If he is quite positive, that is at least a good thing. Sometimes it helped me to have a dinner out with a good friend (refuse to feel guilty!) And do a few things so that you are not spending every minute worrying and watching and asking how he is. I realized that I was adding to my husband's stress by being a little too vigilant and "hovering." I hope this helps, and know that it won't always be like this,

Shelly

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It can take more than 24 months before weight goes back on. I am four and a half years on and when I saw myself post op I was pretty shocked. It took ages before my shoulders were the same on each side! But then things got better. My body repaired gradually with the help of a lot of walking. After 12 months some weight began to reappear and after 18 I got some muscle back. I was 13 stone (too heavy!) Pre op, 9 1\2 post op and I am now almost 11. So it will but the waiting and watching is grim. H

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What's dropped foot? After my op one of my feet used to land with a sort of kerflump as I walked. That took time to even out and was very alarming.

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Hi ...yes that’s exactly how it sounds ..do you remember “Morse” just how he walked. Oncologist said that it’s most likely due to the surgery and not Chemo and can occur up to 3 months post op. Tony has no control over the muscles his foot is numb top and bottom. Does appear to be worse when tired. Apparently it’s the nerve endings down the side of the leg affected as a result of lying on the theatre bed for so long, feelings may return but can take up to a year .

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It was very alarming but it just went away after a while. I did keep walking and walking.

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Aha! We should call it Morse Foot. Sounds a bit glamorous even

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Hi Debbie,

So very sorry to hear things are rough at the moment. I can't offer any platitudes I'm afraid - or even tell you things will get better etc etc - because we have only just started out on this journey and my husband is on his first round of chemo.

All I can say is that we are thinking of you both and hope your husband turns the corner soon . I can understand your feelings of utter helplessness and sincerely hope you have a strong support network to give you help. Everyone here has told me that looking after oneself is important too if we are to be able to support our loved ones. Easier said than done, I know. This forum is a great source of support and of sharing experiences. I know everyone is different but sometimes it just helps to know there are people out there who know what you are going through and are with you in spirit. This time of year is especially hard when you think the rest of the world is out there having fun - eating and drinking etc. I won't bore you with all my tales of woe about other people I know and love - but, believe me, not everyone is enjoying the festivities. Personally, I try to remember past Christmases when it was like that when my children were still at home!! Now I just try (hard I know when everywhere you go xmas songs are playing!!!) to ignore it. My husband will be eating his usual liquidised "gruel" and I'll probably get a ready meal or have beans on toast. No sipping sherry whilst the turkey is cooking this year - or downing several glasses of wine afterwards!! It's just another day for me and has been since my beloved youngest son died in a tragic accident five years ago. So, I didn't tell you that for you to feel sorry for me - just to remind you that you still have each other and Christmas is not a joyous occasion for everyone.

Take care of yourself and know that lots of people are thinking of you and sending virtual hugs 🤗 🤗 to you both.

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Hi Debbie,

A horrible time for you both, and do understand as Dave and Tony have been through silmilar experiences.

One day at a time and hope that things will improve. Dave is almost 12 months post op, and I can honestly say his recovery is not what we had hoped, mainly due to very little motility, so on top of the dumping he suffers from chronic GERD. PPI's are a no go as he is allergic. He occasionally has a good day (happened yeterday~Yay!! Where he managed a huge amount for him, with very little consequence, so we keep hoping!!

Try not to look too far ahead but cherish each moment (hard sometimes I know!!) and take time out for yourself. You will find a balance but it's a totally new way and takes time to adjust. Thinking of you both xxxx

Kate 1503 Thankyou for sharing your story and again opening eyes to different people's problems. Our thoughts are with you very much this Christmas xxx

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Hi Lynn

Been a rubbish week! Can’t remember life before “ I.L”!! Thank goodness for this site so that we can “ air” our thoughts and emotions . Such a trial and error finding out what causes flipping dumping syndrome!! and if it’s not that it’s food getting stuck again after only a week after a “stretch “ !! Never mind....just keep thinking it “Will get better !!!! We

Happy Ivor Lewis Christmas 🎄 everyone xx

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I think that as well as the grief for lost health, body shape and lifestyle, there is a feeling of being frustrated at not being able to control anything. The body tries to heal itself, with varying results, and does so in its own time regardless of anything we do to try and influence it.

The emotions and feelings are very real and justified, and you do have to acknowledge these and look after your own need for reducing stress and anxiety.

You are still a couple and have to get through this together as best you can; many people feel, sometimes reluctantly, that shielding each other from their individual fears and feelings tends not to work in the long term, natural thought this is, but everyone has to approach this kind of thing in their own way.

The specialist cancer advisers / counsellors at places like Maggie's centres or Peggy Brohn are there for the carers as well as the patients by the way.

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Kate , I am so so sorry to hear that , what I don’t understand is why is life so damn cruel for some people!!! You would think you’d been through enough !!! Not the same as you , but for two solid years running we have had to deal with this Cancer ,we are a very close family and I lost my brother in law to Pancreatic... just before Christmas..only to discover that a month later my husband had Oesophageal. I cannot imagined

how you both feel , at any time of the year let alone now but I do have empathy in that Christmas is this year not the same for several reasons ...( definitely lack of alcohol!)

Sending lots of love to help you on this traumatic journey

Deb x

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Thanks Debbie.

Life is sometimes most unfair and unkind and you wonder why some people seem to suffer more than others. I can't answer that but all I (and anyone else in our situation) can do is soldier on, take things one day at a time and try and appreciate what we do have. I must sound like some awful paragon of virtue!! I'm far from that - there have been days, months and years trying to come to terms with my "lot" in life and I have been at rock bottom. After ranting and raving and being in the depths of grief I now know that for me the only way forward is to be grateful for what I do have now - and to love and appreciate all my family and friends. I can now count this fantastic forum amongst them - all of you are helping in so many different ways. Thank you x

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You are absolutely right there Kate , due to losing my brother in law we decided to “go for it “ and moved house after 30 years to do a building project ( husband in trade..still crazy!) complete knock down roof off the lot ... literally the night before his op I was telling him to get off the roof so that I could give him his “Clexane” injection ready for surgery! We’ve had rain come in got boarded up ceilings the lot , inside the ceilings look like jigsaw puzzles but we have been overwhelmed by the love and support of our dear family and friends through all of this. And for that alone we count ourselves extremely lucky, because without them I don’t know how we’d get through.

Jokingly said ...the house will be finished 2-3 years , never realised how true that statement would be 😉! I have a roof and dry now so that’s fine!

Xx

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Hi There, Chin up. We all empathise with each other hereabouts, I am two years and three months post Ivor Lewis and I have very similar problems. It really is a bind for wives, I would have given up the ghost long ago without the help, care and love of my wife.

I think we all agree about the frustrations etc I like your chap lost a lot of weight, from ten and a half stone down to seven and try as I might I can't put any back on. So I completely understand how depressing it is. With dumping I have found fresh ginger tea helps quite a lot and is easy to prepare. Just cut up the bruised root (a teaspoon full) add a mug of hot water and a squirt of lemon and Bobs' your Uncle!

The stricture really is awful and it's horrid having those stretches I dread them, but you have to do your best to look on the bright side if you can.

My wife often reminds me of how capable I was, and still am if it isn't too physical, but it doesn't really help. I expect your chap like me feels like he has become someone else.

Must try to be as positive as possible as long as we keep on eating what we can and keeping our spirits up we are in a good place with people who love us.

The very best of luck on your continued recovery and good wishes for Christmas

Richard

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Thank you tallbear , it’s so encouraging to hear from others that are much further down the line. I find it very hard to keep positive, thankfully Tony has a much better attitude towards getting the better of this than I do ! I struggle to picture establishing a time when we can get used to this new way of life. At the moment it’s getting over having to keep having the stretches done every couple of weeks and it shrinking back to exactly the same as before, it’s heartbreaking a drain and saddens me. We really have no choice but to keep ours chins up I know .... I am so pleased to have the “company of others on here that really understands how all this feels for both the patient and the loved one that cares for the cheers and love Debbiewallis

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