I'm New here ....and I'm a very stressed anxious and sad wife !

Hi my name is Debbie and I am actually writing this as the wife of someone that has in the last four weeks had a total Oesophajectomy with a 2 field lymph node removal following T3 adenocarcinoma. The surgery went really well....home after 6 days , suffered tremendous flank pain from chest drain and initially tolerated soft diet. NOW ....nightmare! Barely getting fluids down and having to have OGD ....weight dropping off so quickly! I don't know how he's holding it together because I'm almost at breaking point I feel more stress now than when he was diagnosed in April and he still has another 9 weeks of chemo to endure ! Has anyone else had these problems and come out the other side ?! Also he sneezes every single time he tries to eat !??? ...what's that all about , anyone else do that ?

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  • Hi Debbie,

    Sorry to hear your husband is having such a hard time. Oesophagectomy is such major surgery that many people have complications. It's a horribly worrying time. At least your husband is at home, I spent the first two months in the Intensive Care Unit. My problems were different from yours, so I can't help there, but I did have the same sneezing problem. It sounds like a minor thing, a joke, but in fact when you're recovering from surgery, it's really painful. I found hugging a cushion to my chest when I felt a sneeze coming helped a bit. My surgery was 7 years ago, I would sneeze up to 30 times, really violently, it was exhausting. I still sneeze a lot now, but now I'm fit and well It doesn't hurt anymore.

    I hope things improve for you soon. Good Luck Jane

  • Thank you for that ! My hubby Tony is so pleased to hear that he's not the only one with the " sneezing" issue ....it's crazy but annoying for him .....think the nurse specialist thought he was mad !

    Just wish the eating / swallowing worry was as easily solved .

    Deb

  • Hi Debbie.

    Not sure how much use I can be. I'm a wife too, but my husband is just had the start of this long road ahead. He had his 1st chemo session on Friday.

    Is there a specialist nurse and or dietician involved in your husbands care that you could ask for advice regarding his nutrition? Is he being peg fed overnight at all? I only ask as my husband has already been told this will be happening after he has his operation even if he is managing soft foods. Husband also isn't getting chemo after the op either

    I think you need to speak to someone about how your feeling. When we got husbands diagnosis I was a complete shambles (not afraid to admit that). I was upset, angry, chucking things about, throwing tantrums, wanted it to be me that had this illness and not my husband. I talked to as many people that would listen, my friends and work colleagues mainly, but I felt the more I told people the story and what was happening the more I was able to accept it and get my head in the right place.

    I know we're not in the same position and I can't really answer the medical questions you have as I've not been there yet. I'm sure some of the folks in here who helped me in my darkest hour will have some advice/answers/suggestions for you too. They are an amazing bunch!

    Take care.

    L x

  • Hi Lucy

    I've actually been writing a reply to you following your initial mention of diagnosis but I don't know if it's 'sent' as I can't find it ?! Not sure if I would be of help ...but maybe to you ..as we are a little way ahead . Symptoms since Feb and told April 5th 2017 @ 1:40 .....a day i will NEVER forget .......my world fell apart ....and from what I've since learnt from specialists and other patients ...will never be quite the same again. But ....what we have to remember and am ( must admit found hard ) is to be grateful and heaven knows thankful that our husbands were able to have surgery ....as so many times we have been told that only one in four do !!!

    Tony my hubby never looked ill either , I had to remind myself it was real ! the first few weeks were 'numbing ' I had awful dreams .....it was all the 'cliches ' you ever hear about Cancer rolled into one. We have tried to stay positive the whole time .....Tony has never been anything but strong. Chemo will get tough though , he was having EOX 9 solid weeks and every 3rd session was a heavy infusion which he hated ! The rest was tablet form . He suffered awful cramps , exhaustion fatigue nausea ...and wasn't allowed to eat drink or go near cold things or fridge ...it would give him throats spasms like electric shocks and even the rain felt like pins, and his veins were really put through the mill bless him ! By the second week or so he could start antibiotics and by then he'd feel much better !

    We had a 4/6 gap after Chemo in order to build strength ready for surgery ...and life felt 'normal' .....I was naive to think we could go on holiday but he wasn't strong enough for that but make sure you plan something local with your family .....especially meals out ! Or in !....eat anything and everything ! If Cancer has taught me anything it's life is sooo precious and the simple things matter the most ....I never thought I'd go from someone that raised an eye brow if my hubby pinched another biscuit...to wishing to God that he could eat the flipping lot !!!!

    Aug 24th ...just over four weeks ago.....the BIG DAY ...9 hour surgery ....longest day of my life !! But fantastic surgeon and team and amazingly after ITU / HDU the ward ...home after just 6 days ! Very scary at the time seeing him in ITU with tubes out of everywhere ! So be prepared! But never had a feeding tube at all .....came home with just small dressings over the wound sites and clips which come out after ten days. He has had an awful lot of pain where chest drain was on right side but at least that's fine now , the main problem and worry is he has a blockage ....gradually worsening over last week ....I'm so worried now ....he looks ill ....when he didn't , the weight is falling off ....been in touch with hospital for referral for endoscopy as he now needs 'stretching' or medical term is an OGD ( Oesophageal dilation) they insert a balloon to stretch the skin but needs doing two or three times . I wasn't prepared for this ......I feel so so sorry for him after all he's been through already ....and still has more Chemo to face ! Cancer was found in the nerve endings ....funny but being told that last week during follow up really didn't make any difference on top of everything else ....it's just like "what ever". ! Although we were always told that Chemo post op was the best insurance policy .....even if it was only 5% difference .....so it's a " no brainer"

    We hope this is just a "blip" as Tony's always called his cancer ( among other names I can't repeat !) And we are fully expecting a long road ahead .........I just want it to carry on a little less "bumpy"

    Good luck to you and yours with your "voyage" ahead ....keep smiling if you can ....failing that my tip is a G&T !!!

    Deb x

  • Hi Debbie.

    Sorry to hear you are both having such a tough time. Everyone is different and some people might have the sneezing problem, others the dreaded cough. I did have the sneezing but it didn't last too long. I also had the cough which I was told was caused by reflux.It is a long and difficult journey recovering from this surgery but things do improve. I am now 10 and a half years post op and feel very lucky. Incidentally I have had Pleurisy a couple of times over the years and was advised to wrap a towel around my ribcage when sneezing or coughing. It really helped

    I would ask your GP just to be on the safe side if it would be ok to do that.

    Best wishes to you both.

    Steve.

  • Hi Debbie,

    I'm so sorry for all the problems you and Tony are having, and really empathise and understand.

    My husband was diagnosed with OC in May 2016, and like you our world fell apart.

    Dave had his oesophagectomy in January and has had many complications anf problems, some we were expecting and some not. He has also had to have OGD ( a total of 6 so far, and still has major problems with food sticking/not going anywhere which means he can eat very little, I think due more to slow motility.

    The stretches have started to work, and I think the longer period of recovery the less the scar tissue build up, so hopeful news for Tony!!! Other problems like slow motility we will have to learn to live with. Like you we are incrediby grateful for a 2nd chance at life (Dave was also T3 N2), but still struggle to adapt to the new way of life at times.

    Our motto is take one day at a time. We can't bring back what is gone and tomorrow hasn't yet arrived, so we focus on today ~ not always easy I know!!

    The weight loss is normal, and we find trying not to stress about it helps. Keeping mealtimes as relaxed as we can, and not worrying if food is left as I think this can cause pressure. Some of it is accepting what has happened and the new way of life ( which is dfficult), and trying not to compare it to what we had/have lost is key too.

    I know the op and new "plumbing" has at times made Dave feel inadequate, and knocked his confidence, but I know, like you, with time we can and will do this together.

    Our thoughts are with you both, and please do let us know how you both progress. Extra hugs to you as I know how tough being a carer, and watching the person you care most about going through this is!!

    Best wishes,

    Lynn x

  • Thank you Lynn , it is such a relief being able to correspond with people that know exactly how you feel . I've always been a strong person ( lost my darling brother in law end of last year with Pancreatic cancer) and was devastated to discover it hit our close family again less than 3 months after !! our motto has always been "make the most of life " you never know what's round the corner ! We held onto that even more and it's flipping tougher than anyone can imagine and we know things will never be the same again ,but we WILL enjoy life again.

  • You WILL find a new way Debbie. Life can be hard can't it? We lost Dave's Dad unexpectidly 4 weeks before Dave was diagnosed, and also 2 of our dogs to cancer, who were a huge part of the family. Like you,we don't take life for granted anymore but value what we have.

    I am on facebook where I could let you have my details if you think chatting and sharing would help?

    Take care x

  • Hi Lynn yes I would that sounds great ! I am on there too x We had a fairly successful first response after the OGD yesterday .....it's a start , actually managed a full mug of bovril which has never happened since the 5 weeks ago that he had surgery. We know he may need more attempts but it's a start to building him up before Chemo soon hopefully!

  • Really pleased. That's a positive start for you both, we're keeping our fingers crossed for you!!

    If you do look on facebook, I have pictures of greyhounds as we work with the rescue, so easy to spot, and not that many with the same name x

  • I think it is enormously stressful to feel that you have the responsibility of your husband's care at home; at least in hospital there are doctors and nurses who can take charge of things. Also it is something that you as a wife go through just as much, but in a different way, from your husband. So you do need to appreciate the strain that you are feeling, quite normally.

    It might be that the food is not draining through into the rest of his system very well, and that he might need to have his pyloric sphincter stretched a little bit (it is the valve at the bottom of the stomach). I think asking for a review through the specialist nurse would be a good thing (but I am only speculating without qualifications!).

    It does look dreadful when we get thinner and thinner, but this is not necessarily anything other than a reflection of reduced food intake and the system recovering from the shock of surgery. If he can nibble at biscuits and take build-up nutrition drinks, this will be helpful. Anything to get his new system trained to accept food again.

    It is true that the chemotherapy causes a great complication in all this, and people's reactions are so different from each other. It is an enormous challenge to resilience and courage to keep going, and definitely a struggle for both of you. But it does not sound to me as though he is progressing anything other than normally, within the range of other people who have had this surgery. That may not make any difference of course, but do not despair. This treatment / therapy kills off the cancer but it feels like it is killing the patient as well at times.

    What you really want to see is visible progress to reassure yourselves that the surgery has all been worthwhile, but that may not come for a while yet. It does take a lot longer than we bargain for. Meanwhile, keep going with trying to get various issues sorted if you can, and there is every chance that things will be OK.

  • Hi i stayed in hospital for 2 1/2 weeks as fluids nit going down. I had a stretch which took no time they put in botox injections. Then fluids stayed down. Went onto soft diet then eventually normal small portions. Trial and error some things still stuck or heaved as reminded me of chemo. Lost 3 stones. Now settled down 18months post op. My family were too stressed!! Need to be calm and take one day at a time. New plumbing causes problems with dumping still.

    Away in crete enjoying life again. Yes things like eating are a problem.

    Renember csn and dietician at hospital should be contactable.

    Got lots of support on here

    Good Luck in his recovery small steps yes chemo harder. I had 2 drugs only but still cut short the treatment time. No two patients the same.

    Best wishes

    Debbie

  • Hi all can I say firstly as so many of you have , that How brilliant this forum/ community is ! all my fantastic family and amazing friends are so supportive and kind but it still feels very lonely at times being forcibly removed to this Cancer bubble we're in, it's good to have voices out there even if they're silent.

    Anyway ..today after a few anxious calls and Tony not even getting milk down/ any fluid down without being sick ! He now has an OGD booked 8:40 tomorrow morning. I know it's probably going to take several attempts but it's a start, failing that because he can't swallow any dietary supplements they may admit him.

    Still keeping positive!

  • Hi Debs

    My wife had the IL 4 years ago, lots of complications just after the op. 6 weeks after the op she was discharged. I remember it was such a scary time, lots of challenges, aches and pains, not able to eat a constant cough to name but a few. Whilst I might not have been crying outwardly I was sobbing internally.

    I wondered whether my wife would ever get better. Well you know what - she did!

    She still has a few challenges like dumping, but my wife leads much a normal life, other than having to watch what she eats, she is now trying to lose a few pounds! Trust me your hubby will get better too! It is still very early days, allow time for body to heal and recover.

    Think to the future together, you still have so much to look forward to!

    Big hugs

    Steve

  • Thanks Steve that's really cheered us up !!

    Hope you continue to enjoy life !xx

  • Hi Debbie,

    I am now 6 years post op and 5 years after final chemo treatment. My Consultant no longer wishes me to see me. Great News - 5 years is the 'magic' milestone.

    Your husband did well being discharged so soon. Due to a leak in my oesophagous after the surgery I was in hospital for 30 nights until it healed. I lost 3 stones in weight and have not been able to regain it - but that's not a problem. Eating still presents problems and I still suffer from sneezing occasionally depends on what herbs/spices are in the food.

    I sympathise with him regarding the chemo treatment - not pleasant and some nasty after effects to cope with. He must Persevere. The outcome is worth it!

  • Well done Alex !! These replies are so reassuring and comforting ...🤗thank you x

  • Hi Debbie,

    I am also a "wife" and can relate to everything you have written. My husband is 3 and a bit years post op and doing well now. It is truly terrifying to be caring for someone who on discharge from hospital is still very poorly - the cancer may have been removed but you are left with a shell of the person you delivered to hospital!

    He had awful hiccups after they started him on liquids - it turned out to be a symptom of a leak in the join. He spent 2 months in hospital (6 of them on a breathing tube and sedated). When he finally came home, as joyful as he was , I felt that the tiger I had been visiting had been let out of the zoo.

    Things will get better, bit by bit. He had one stretch which seemed to solve some problems with swallowing - he also has a permanent stent, but this hasn't held him back. Some of the things that helped initially were sips of "full fat" coke for nausea/low sugar. Baby's gripe water for wind/nausea. If possible, get out for a breath of fresh air and think of happier times to come in the next few months. I would say it took at least 9 months before I felt we has anything near a normal routine, and had theconfidence to go out and about very far. Since then we have managed 3 holidays abroad and we are grateful now for each and every day.

    Keep talking to people, look after yourself too as it is all too easy to neglect your own well being.

    best wishes and good luck,

    Elaine x

  • Hi Debbie

    Does Tony have a scar low down on the left side of his neck?

    If yes then he has had a radical operation where, in order to create a sufficient safety margin away from the tumour, almost all of his oesophagus has been removed.

    So the pulled up stomach, which has been refashioned into a narrow tube, is reconnected to the remaining stump of the oesophagus in a third stage procedure called a cervical anastomosis.

    This procedure is tricky as there is so little room to manoeuvre at that position. Some collateral damage is almost inevitable. The most common injury is to the left recurrent laryngeal nerve, which looks and feels like a thin piece of spaghetti and runs all the way down the neck, looping under vessels to the heart and then back up the neck. Different branches of this make different nerve connections along the way. Unlucky IL patients experience speech difficulties but paroxysmal sneezing is the commonest side effect.

    Mine ( 26 years post op ) is triggered by anything crispy scraping the left side of my throat as it goes down. So cornflakes and granola are no noes! Not surprisingly sensitivity can be increased by infections such as sore throat etc.

    It is annoying but otherwise nothing to worry about, but do make sure he has emptied his mouth when the bout of sneezing begins to avoid food particles being blasted up behind the soft pallet which is very uncomfortable.

  • Hi , yes he has had all removed plus a third of the stomach and 2 field lymphoidectomy. Thanks so much for that , it's exactly what happens...every time at present , regardless of what he eats but he's also realised as you say , it can be uncomfortable!

    Thanks again

    Deb

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