My husband died of cancer of the oesophagus

Hello, I only discovered this website by accident a week or two ago, it was on Facebook so I clicked on the link and discovered lots of people sharing their experiences, I have responded to a couple of people already. I only wish I had discovered the website a year or more ago when my lovely husband and I were facing his diagnosis of cancer of the oesophegus, which we were told was inoperable. There is so much support and useful advice and I am so sad that I have missed the opportunity to share our experiences and share the wonderful support we could have had.

My husband sadly died in November last year and I am just distraught and unable to come to terms with his death. I suppose he was so much stronger than me in the end although he always told me that I was the strong one in our relationship. He was diagonsed in December 2009 and commenced Chemo 2nd February 2010. He was supposed to have 8 sessions but only managed 6. He suffered so much during his Chemo sessions, ended up in hospital with severe sickness one time, a blood clot on his lung another time. He was also a COPD sufferer and one time a doctor told us he didn't know how my husband was still able to breathe as his lungs were so poor. But he battled on and never ever gave up hope. Unlike me he refused to read anything about his condition, I had read and known that he was unlikely to survive beyond a year - but his amazing spirit and determination did have me believing he could be with me for a few more years.

Last October he developed a horrible cough, i was so worried and told him he had to see his GP. He relented and we went, only to be told his chest was 'crystal clear'. Well that was such a relief to me as two years previously he had pneumonia and was in intensive care on a ventilator for 11 days. Only a few days later he got up one morning and couldn't stop coughing and his breathing was bad. I called an ambulance and the paramedic tested his sats and told me they were below 50 which is dangerously low. He was admitted to hospital and spent the next 3 weeks recovering. By this time he was very weak and barely able to walk. He was constantly on a drip which was very painful for him as they had to put a canulla in his veins but due to the Chemo it was very difficult for the doctors to even find a vein. After he'd been in for one week a doctor came and told us there was calcium in his bloood. I had no idea what that meant and no-one explained it so I looked it up. There are several reasons but one of them is cancer spreading to the bones. He did get a bone scan but no-one came back to us so I assumed it was ok. My husband was one of those people who thought 'if they find something they will tell us, I am not going to ask'.

Anyway he got home on the Friday afternoon, was I happy!! I knew he was weak and tired but in my mind I just thought he would pull through. Only the next day when he was trying to eat he started having difficulty, nothing would go down. We watched a bit of TV that night then he went to bed. He never ever got back up as the following morning he was just so poorly and couldn't get out of bed. when eh was breathing his chest sounded to be crackling and I feared he had another bout of pneumonia I had to get an emergency doctor and the district nurses were coming to give him an injection for his pain. The following day I called his own GP out who hardly spent any time looking at him, just asked me if he would be able to take liquid antibiotics and off he went. He rang me about 4 hours later asking if I knew that it was 'end of life' for my husband. No way did I believe that diagnosis and asked how he could make it when he didn't even look properly at him. He then decided to try to get my husband re-admitted so they could do an endoscopy as he was unable to swallow by this time. They took him back into hospital at 1.30 the following morning, did the endoscopy later but then nothing else. I wondered why they weren't treating his chest infection.

That same evening they transferred him from the admittance ward back to the ward he had been on but they put him on a side ward. Some people have told me I ought to have known that he was nearing the end then. Why should I have known? He was on a side ward when he had the blood clot and recovered. I so so regret going home that night when visiting time was over. No-one mentioned that I could stay and I always thought, wrongly I know now, that he woul pull through. I did ring the ward about 9.15 but the nurse said she had just come on duty nad was busy treating another patient and hadn't seen my husband yet. I wish I had rang back but didn't want to become a pest. At 1.30 the following morning I got the phone call to say my husband had deteriorated so I ran back to the hospital. the doctor told me he was going to die and they would not be able to resuscitate him, did I have any questions. I only wanted to be with him so they let me, but he looked so different to when I'd left him a few hours before. I'm not sure if he would have known I was there as the doctor said he was almost unconscious and I could tell by his eyes he was just not properly awake. I must have been in shock as I have no idea what I said to him. He died within minutes of me getting there but I have very little memory of our last moments. My sister managed to get there too so she has told me littel bits, but she wasn't there the whole time.

I feel tremendously guilty about my apparent lack of concern that night, just going home and leaving him like that. I ask myself how I could have just been so certain he was going to be ok and the only answer I come up with is this - he thought he was going to be ok and in the end I believed in him and not what I had read about this hideous illness. He was a massively positive person, unlike me, but that is what got him through those months while he battled his cancer. I was so certain he wouldn't be with me for most of last year but there he was fighting until November, as well as his battle with COPD.

I miss him so much and there hasn't been a day since he died that I haven't cried for him. We were so close and did loads of things together. I wonder how I'll ever get over losing him. I've got a lot of wonderful friends who come to see me, invite me out, they're just there for me. I am so grateful because they do help take my mind off things but then when I'm alone the grief closes in around me and I find myself crying for my loss. I have read other posts and know it's not only me, but sometimes it really does feel that way.

Holly xx

  • hi holly what you are feeling is FALSE GUILT we are punishing ourselves because they are no longer with us. you are mourning and the bad things come to surface before we think about good things and times. i have been like this too. everyday i think of something bad and then i think but we had loads fo good times. do you have support from doc or counselling? i'm waiting for my counselling appt i need ti ge alot of my chest i also asked to have an appt to speak with the doc that was treting steve, i need to know what happened? why did he die so quick. i feel i will learn to accpt he has gone if i know these things and also to have access to his records . keep thinking of the good times you have memories forever

  • Hi blackbun40

    I met with an old friend today, haven't seen her since Doug died as she lives away. She is a lot younger than me but was so careful to explain things to me, I really listened and tried to take in what she was telling me. It did make so much sense. She carefully explained about the guilt feelings, about Doug's last few hours and how nothing could have changed, about why I should not be beating myself up because the hospital didn't say more to me that night.

    I have spoken to my husband's consultant and also one of the nurses, who both tried so hard to help me come to terms with losing Doug. Everyone has said I should feel no guilt and i should stop worrying about what other people think of me. I have tried so hard to build a normal life in the 3 months since Doug died even though I know that isn't possible. I have met up with friends, invited them to my house etc etc. But worried that people thought I was over losing Doug because of what I was doing. I will never ever get over losing him no matter what I do but in time I might come to terms with it a bit better. That time is a long way off but it might be on the horizon.

    I hope you get your appointment soon with the consultant who was treating Steve. Will they allow you access to his records or will they just discuss his treatment with you? I am interested to konw, I would really want access to Doug's records but that hasn't been mentioned to me.  I strongly believe that part of the problems people face is just the not knowing what was happening. I know for sure I would feel some kind of closure if I could find out what happened with Doug that night. But in his notes are just a few entries later in the evening to say his blood pressure had dropped and that they could do no more for him. I wish with every fibre in my body I had been with him all night but I can't turn the clock back, hence my guilt.

    Take care.

    Holly xxx

  • hi holly. i am still waiting for someone to call me back to arrange appt to see the consult. i have been told i can see his notes regarding his treatment while he was in hosptil.;. willl phone back monday. i have had my hair done this week (badly needed it)     also had counselling assessment. will get  a call next week at arrange what day i go. i'm sure it will help me along the way to be-able to talk about what i have gone through over the last three months. i'm meeting a friend of wednesday for a drink, she lost her hubby three years ago to lung cancer within three months. i stilll feel guilty about being alive, but i know steve would say' carry on and look after the girls for me'.  everday is still hard and i know it's going to get worse before it gets better, but it's still a frightning journey, hope you feeling ok today

  •     Hi Blackbun40, I hope you manage to get your appointments sorted out this week. I wasn't sure if anything was going to help me understand and come to terms with what happened. But I do know I wanted to try everything available, just in case, and I always think it can't do any harm and might even do some good. No one mentioned counselling to me but the nurse has told me I can ring her any time and she will come out to have a chat. I hope you manage to have access to Steve's records just so you know as muvh as possible about what was happening. I'm glad to read that you are meeting up with your friend Wednesday whose husband died of lung cancer. She has gone through what you're now going through so will have a great understanding. I have a friend whose husband died of leukaemia 3 years ago and I know she can relate to what I'm going through. Every day is still very hard and I don't think I feel any better now than I did when it first happened. I wonder if any good days are not very far away? It doesn't seem like it yet everyone says it will happen. It is indeed a frightening journey, one which none of us want to make but we don't have a choice. My worst times are when I dream that Doug is still alive, very vivid dreams, then I wake up and find I'm still all alone and I just can't bear the pain.

    Please let me know how your week goes and I do hope you get some news about your appointments.

    Love Holly xx

  • hi holly. i go wednesday for another session. my friend has cancelled our drinks hopefully she will book again soon. phoing hosptial back this morning to find out about appt to see the consult. sometimes when i dream about steve. i suddenly wake up:(  i don't feel in such a limbo as i did a few weeks ago. but the pain is still there and the loneliness, part of me has not taken it in that he won't be comming back. maybe i don't want to belive it just yet. i still keep going over the day he died. i know i did everything i could to help him, in his final hours(which i did not know would be) it's scary knowing we have to do it alone and do the best we can, but still not fair. hope you coping as best you can holly xxx. where are you from ? you can sent private message if you want

  • Hi blackbun, so sorry to hear your story xx my husband Peter has liver cancer and cancer of the oesophagus, unfortunatly there is no treatment for him as it's aggressive, he was diagnosed after numerous test back in April but we didn't ask how long he has left but we know it's roughly 6_12 months . We got married in July , Pete has his good days and bad days he is on slow release morphine and has oramorph to hand he has some pain along with tiredness , it's heart breaking to see your loved one suffer , my thought are with you xxx
  • I'm sorry for your loss my wife died breast cancer on the 22nd of December last year she is 39 she left me two children nine-year-old and a two-year-old  i'm here if you want to talk

  • I am so very sorry to hear about your wife, so young it's heartbreaking.
    my husband was diagnosed with stage 4 osephagus cancer on 2nd Feb this year, we have a 16 year old daughter.

    I can't possibly imagine what you are going through but please reach out for support, there is a lot out there, also support for your precious children.

    always here to chat 

    take care 

  • Hello 

    hope you're husband is feeling ok? Cancer  is horrible I hate it today has been hard kids up and down  it's a horrible feeling for all of us x