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
