Oesophageal Patients Association
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All for nothing

I'm truly sorry to be so down but I suppose I'm just being honest. My husband was diagnosed in July last year with stage 3, he had pretty radical chemo and then the Ivor Lewis op in late October. He was told he had a good chance. Post-op he had no chemo or scan and went off to recover. Some weeks later, around Christmas, we felt as if he was making some slow progress, this continued, but I posted here about weight loss and chemo brain as we seemed to have started going backwards, and the last 2-3 weeks he became more tired and weak and then short of breath, a lot of difficulty eating, and I took him to see 3 different GPs all of whom could find no cause for his symptoms. Finally on Monday I took him to A&E and he was admitted first to our local hospital and then transferred to the upper GI team where he had his op last October.

2 days ago we were given the terrible news that his cancer has spread into his liver and a rib. Also he has a pleural effusion (fluid on his lung) and there's a big problem with some kind of obstruction , they called it nodes, preventing his food from being processed through his digestive system, fluid had all backed up swelling his stomach and they've been aspirating this through a naso-gastric tube, 2 litres initially and gradually less. No wonder my poor darling was having difficulty eating. He's on IV fluids, 3 different IV antibiotics, and oxygen.

So it was all for nothing, he's been given months to live , possibly, and he was offered chemo to give him more time, but he said he couldn't go through with that again. They are gradually introducing soft foods today, soup and jelly, and this will increase gradually depending on the obstruction. If that doesn't work he'll have a naso-gastric feeding tube inserted and will be fed that way. Once his nutrition needs are met he'll come home and I hope that his remaining time on this earth will be spent in comfort surrounded by love.

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I know exactly what you are feeling just now.

My husband (48 when diagnosed -August 17, T3 N2 M0) had pre-op chemo (September through to December 2017) then an Ivor Lewis operation January 18. We call it the op that never was because after 10 hours of surgery and having 2 surgeons working on him they couldn't get the tumour out. It's still in there although the pre-op chemo zapped the lymph nodes so they are clear and there is still no spread.

We too feel that it was all for nothing. However we are taking each day as it comes. My husband has yet to start palliative chemo. It's taken him a long time to get over the op that never was. He's been admitted 3 times since then. However he got his jej and peg tubes out last week and is at last managing to eat with only the occasional bout of sickness.

Don't give up. Perhaps once your husband has his nutrition sorted he may feel strong enough to have chemo or at least look a bit more in to it. I noticed from one of your previous posts that your husband is being treated in Edinburgh. Mine too. Chemo at the WGH and surgical at ERI. Small world really. We've probably sat in that waiting room of the Western together as some point and never realised.

I'm sending you some positive thoughts and I hope that the dieticians get your husband's nutrition sorted so your time together is that of quality.

Thinking of you.

L xx

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Dear Lucypuppy,

Oh my God, your husband is only 48 and this terrible thing has happened, you must be utterly bereft, but I suppose you both have to hang in there and get through it one way or another. I feel very humbled, my husband is 77 so he has lived a long life. I am his second wife, his first wife died of breast cancer 7 years ago , I was divorced and we married four and a half years ago, and were able to find happiness again late in life, and now it has all to be snatched away, so unfair.

Since hearing the terrible news on Friday I've almost been grieving, going through emotions of sadness, disappointment, frustration, tiredness and anger. He was diagnosed in July having had no symptoms whatsoever other than tiredness, so it came as a terrible shock, as I'm sure it did for your husband. But we were given hope, scans had shown spread only into lymph nodes around his oesophagus and pancreas, and he was given a good chance of a 'cure' as the surgeons called it. So we went for it and then came weeks of treatment, first radical horrible chemotherapy and then the surgery. He was on the Romio trial and his abdominal approach in the IL op was with the laparoscope. He came home on his 8th post-op day to my loving arms. District nurses came in daily to attend to his wound which had burst open in the hospital, one of them said she could almost put her hand inside the wound. But we persevered, as we did with his jej tube, the feeding making him feel bloated and sick. Always hopeful of a 'cure'.

By his clinic visit in early February we were feeling as if he was making slow progress but then all of a sudden things changed, he was finding it really difficult to eat and he was getting weaker and his breathing was laboured, he was losing weight and almost shrinking before my eyes. I took him to 3 different GPs all of whom could find no reason for this change and I eventually took him to A&E at our local hospital on Monday. And then came the awful news from a surgeon that his cancer had spread.

I feel very angry and disappointed that he went through it all and it's been for nothing. Today I will ask his surgeon some questions. Why do they not follow up with post-op chemo? Why do they not do a follow up scan? Why are they not draining the fluid off from around his lung? Why has it accumulated there? What has caused the obstruction in his digestive system?

None of this is helping you, I feel very sorry for you, for us all, and I hope we all have the courage to face the future, whatever it may hold. And yes, our paths have quite possibly crossed in WGH or ERI. Good luck with it all, you're in my prayers and thoughts.

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Dear Laverock, this must all be terribly hard to deal with. I too am surprised about the chemo and ct's. My hubby had 9 weeks chemo, Ivor Lewis, complications so the second chemo had to wait a couple of months. Then 9 weeks chemo, then the ct noted the raised lymph nodes so 5 weeks radio. he had nearly a year clear and then everything came back, but his ct's were every 3 months, then 6 months then back to 3. he also had extra endoscopys and x-rays inbetween and a further two lots of chemo and other ops in between for unrelated items. I think I would question why yours seems so little in comparison. We were based at two hospitals but the actual surgery was the Norfolk and Norwich where they are really good with OC. I hope they can make your husband as comfortable as possible. Take care, Carrie

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sorry, got confuffled, I should have replied to Lucypuppy. xx

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Question everything. That's what I've been doing since the start of this. It's the medical teams job to help you to understand what is going on. If you don't agree or don't understand it then ask and question it. I lost count of the times during my husband's stays I've queried why they did this or that over that and this. I must admit I ruffled a few feathers too when I felt my husband wasn't getting the appropriate care to the point that when he was in HDU various "chiefs" sat round his bed with me and my husband and apologised for the lack of care he was getting.

I too think its awful that you have to fight for everything however, whilst my husband is unable to do it for himself I will do whatever it takes and if that means rufling feathers then so be it.

Before the op that never was I too questioned several time why there would be no post of chemo and no follow up as I had read various research articles that was the gold standard. I'm still waiting a proper answer to that. Not that it would've made a blind bit of difference in our case. From a paper point of view the odds for my husband were good. His age, he had no underlying health issues, he pre-op chemo had shrunk the tumour and zapped the lymph nodes. He too was supposed to be part of the romio trial, but his op was brought forward by a week as they had a cancellation so it was a full open surgery he had. He basically had the Ivor Lewis procedure without the removal of the oesophagus and the tumour. Everything else had been done in preparation and thats when the problems started in theatre. They couldn't remove the tumour. Then because of the prep work they had done about a week later his stomach moved in to his lung space and took up residency. Cue another operation to rectify that.

Anyway I digress. I really do understand your anger and frustration. I've been through it all. That and grieving for the life that we had planned that we aren't going to have. But we will have new plans and take it from there.

Yup hubby was only 48 when diagnosed (49 now) I'm 40 and he has 2 teenage daughters (17 & 16). We'd been married for 6 months when he was diagnosed. So his first goal was to get himself out of hospital for our 1st wedding anniversary at the end of January and he did it! No big celebrations, meal out or glass of wine, he simply couldn't manage so we sat and had ice cream in bed for breakfast 😂

He has since had a stent fitted and is managing to eat and is steadily putting on weight. He's not 100% but we're getting there albeit slowly.

We don't know how long he has with us, all we know is that things are stable so his team are happy to allow him to build his strength up before any treatment is started.

I hope they can answer some of your questions. I usually find the nurses are a bit more forth coming with information and can be pushed a bit further.

Thinking of you. If you need to rant or chat feel free to private message me on here. We can vent together.

Take care.

L x

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So very sorry to hear this awful news. My thoughts are with you both. Kate x

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Dear Laverock

I am so sorry and of course you would feel down - don’t apologise.you should cry and rail as much as you want. This cancer is awful. I am so sorry to hear about your husband - it’s devastating.

I myself was diagnosed Jan 2016 after 6 months delay by useless doctors. Went through chemo followed by chemoradiotherapy and 12 hour surgery. 1 month after being given the all clear a large metastatic tumour was found in my hip socket. Surgery and radiation again. Pain again. Will know if it’s successful (but unlikely) in May. No one has any experience in my situation so there isn’t even a treatment protocol.

Despite being in daily pain and constant anxiety I tell myself it was worth it as each day I live is another day to see my son grow up. I had a terrible time with the chemo so I can understand your husbands choice - for some it’s really bad.

Sending you hugs and prayers for your husband.

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Hi Blossomstix. I am sorry to hear of your troubles. Have you asked for better pain management? My hubby had some morphine, low dose with paracetemol and the two together give a stronger dose (if prescribed correctly). He also had Oramorph for the extra pain. Don't do what he did and suffer, I had to ask for extra in the end as he would constantly struggle, but never ask. Take care of yourself, and wishing you all the best. xx Carrie

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Hi Pride

Thank you for your kind words. I find oramorph makes me feel so wired and sick and nauseous and paracetamol is just for a mild headache although I do use it. I take co-codamol at night when the pain is worst as it helps me sleep. I just seem to find strong painkillers just make me feel worse than the pain. But thank you for the suggestion.

Take care

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Hi Blossomstix, I would highly recommend asking to speak to a pain specialist. my hubby had dealings with lots over the years to ensure they had given him everything they could that would work for him. Please ask as there may be something better out there for you. xx

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Dear Laverock, words cannot express how deeply I feel for you both right now. It is terribly sad and upsetting, but hopefully you will be able to bring him home and have some quality time together. Personally after watching what 4 lots of chemo did to my husband I would have to agree with yours not to have it. If it is only going to give him a little longer anyway, he may as well live it without poisoning himself. My husband was due to return from hospital back on Tuesday 3rd May 2012, the last lot of chemo although mild had hit him so hard that he had oral thrush and ulcers in the mouth again and needed two carers to help him out of the bed just so he could sit in a chair or use the toilet. I wanted him home though to feed him up as he was just 6 stone. However on the Sunday I was told he wouldn't make it, and he succumbed on the Monday. Someone looked after our children and I luckily stayed all night where we said what we needed to. You will hopefully have a few months to talk about and spend some quality time together. If he is well enough, use this time to say everything you wish you had already, visit places if you can. We hardly did anything over the 3.5 years - well 4.5 as he had a heart attack and triple bypass with major internal infection first. Mal was just too ill from day one he had four lots of chemo in total, 5 weeks radio and the Ivor Lewis, but also had several other complications along the way. I often wondered what the point was, but without it, there was no chance at all. His dad had the same illness in Oct 1988 and by Feb 89 he was gone, half his original weight bedridden for most of it. Just 55. Mal beat him by one year at 56.

If you ever want to talk, I normally have the computer on in the background. Sometimes talking about nothing or to a stranger helps. Obviously it won't be easy for either of you, do you have anyone to help you? Friends, family? Ask for a care package to be put in place to. We were given a substantial amount of equipment, like a hospital bed, commode etc. and would have had 2 carers 4 times a day had he have come home. Make sure you look after yourself to. Wishing you both peace at this most difficult of times. xx Carrie

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Big hugs and love over the ether ............

Steve

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Laverock, you are entitled to feel 'down' about this as it is perfectly natural to feel that way.

There are not any guarantees in the treatment and sometimes, despite the best efforts of the medical team, they cannot clear the cancer, and these things always have a personal dimension when it is your husband who is one of the unfortunate patients who do not get cured. These cruelly dashed hopes are the price of love and the positive optimism that you have to have in going through the treatment in the first place, hoping for the best.

I am sure you are right in concentrating on making the best of the time he has left.

The hospital will, I am sure, do all they can to alleviate the pain and discomfort; but usually the consistently best people at dealing with pain are the hospices. Try not to think of approaching a hospice as a sign of giving up. They can do a great deal that hospitals sometimes cannot do to the same degree, and the earlier you make the contact, the smoother things can be, especially regarding organising care at home if that is what you decide to do in due course.

Our very best wishes to you both

Alan

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Oh I am so so sorry to hear of your hubbies tragic news. I don’t quite know what to say. I hope you have him home to you soon although it must be very scarey for you. Remember we are always here, sending big Huggs your way and may your precious hubby be home with you soon xx

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Thank you all for your replies, I feel that we are not alone with all this wonderful support. My daughter, Zoe, flew up today from Essex and is helping us greatly, and we hope to have my husband home tomorrow after we have meetings with the OT, physio and dietitian. Also Zoe will collect a wheelchair from the Red Cross, We had a big meeting with the leader of the palliative care team today so I feel good about the support we'll be given at home. There was a beautiful sunset tonight shining over the river Forth, and there is a new moon in the sky. I made a wish.......

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Hi...I’m so so sorry to hear about your hubby, I know you say he’s had his life but 77 is still just a number and in this day and age he should have still years to live and love. I lost my darling brother in law to Ca Pancreatic last year and we thought we’d have him for a long long while to come , he was the same age . Then three months later my darling husband is diagnosed with Ca Oesophagus, ...9 weeks Chemo , an Ivor Lewis and another 9 hope weeks post Chemo ,now coming up for 7 months post op but if I let my guard down ...I feel I’m constantly in fear . I’m petrified it will return and I feel guilty when others have dreadful news when although Tony has had constant ‘stretches ‘ And bloody dumping syndrome is a nightmare... but it’s so hard to keep looking forward and trying to ‘live’ again. I hate what this damn disease has done to him ,to us , and no one else understands apart from those going through it .

I wish you all the strength in and love for all of you , to and once again I’m so sorry...keep up your strength and look after you too xx

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My turn.

Today it is my turn, my husband was only in the door from the hospital when the phone rang to tell me I'm to have an endoscopy today as the unit had a cancellation. A pre-cancerous lesion was found in my stomach 6 months ago so this test will check it's progress, I need to have it done.

Fortunately my daughter and son are here so they will be with my husband while I'm away at the hospital.

I phoned our Hospice this morning to try to find out what palliative care my husband will have , we've heard nothing and are unsure of what happens next. We're both very emotional also, the shock of th cancer last year was one thing, we coped with it vbecause we had some hope, but this is different, we have little to cling on to but each other.

Sorry to be so down.

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I can't express how sorry I am ... words fail me. I can only send you a hug and say a prayer.....

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Thank you all. We have some care in place now, Marie Curie nurses and our district nurses and our GP, and we have a wonderful bed with a special mattress, a wheelchair, a shower seat, we're awash with equipment. He wants to stay at home. My husband is being given medication by injection which is keeping him comfortable, and he is tolerating small amounts of food and drink. I'm contacting friends and family by email, less stressful than constant phone calls, and I've taken some control over visiting hours so that we could both have some rest. We've come to terms with the shock and are resigned to what happens from now on, trying to enjoy the time we have left together. The main thing is that he's comfortable and knows that he's loved.

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Sending you good wishes and strength and hugs xx

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