Firstly, to everyone here, I am so, so sorry for your losses.
Finding myself searching for support has really shocked me. I’ve lost lots of close family and friends and all have been big losses and because of this I thought I knew in some way that I would cope with losing my partner.
He was my best friends big brother, 7 years older than me and we met when I was 14. I had the biggest crush on him. But we didn’t get together until I was 31, he 37. We’d both had failed serious relationships and children but we’d both known in some way that we had a different story to tell. And we had been together for the last 13 years. 19 days ago I lost him. He was diagnosed with advanced bowel cancer that had spread to his lymph nodes 2 years ago, He underwent chemo and radio and the cancer went from the glands and the massive tumour had shrunk and they took it, and an area the size of a rugby ball out leaving him with a stoma. Op successful!! Or so we thought. Less than 4 months later we spotted lumps along his collar bone - cancer was back and spread rapidly. So back on chemo but the prognosis changed to incurable on the 3rd round when we could see more and more lumps. But his consultant was eager to move on and try another chemo so we felt we had plenty of time still - the clock wasn’t against us. The next chemo did nothing but new lymph nodes weren’t becoming obvious so there was a chance it was slowing it at least. Then he woke up and lymphodema had materialised with a vengeance and his right leg was at 3 times it normal size and he was in immense pain. Urgent scan showed a bizarre mass and his muscle in his thigh was calcified and the horrendous pain was the cancer on his sciatic nerve. A new diagnosis - nothing to do with his bowel cancer . The heavy duty pain meds came out but within a week he could no longer walk. A hospital bed was sent in for him and overnight our home became a hospital. Each day the pain became a little worse. The palliative care team were amazing. They were coming once a week at first with the district nurses twice a week - even his consultant came to the house to check on him once. But I was his full time carer and we weren’t getting close to having the pain at a level where he could breath without gasps. He was a stubborn man and was insistent he didn’t want to go into hospice but for the pain relief he needed it couldn’t be done at home. 4
more weeks it took with him passing out regularly from the psin before he agreed but for no more than 7 days. He’d put a limit on it. We got him in and everyone promised him he’d be home in less than 7 days. The first super strong pain med sent him loopy and it took 2 days to wean him off to try the next combo but he was still acting strangely. We thought it was just taking longer to clear his system but then his bloods showed there was an infections somewhere. He had no temperature at all. But he was in a state and had to be sedated for his safety. I had the discussion with his Dr about whether it was terminal agitation but they were sure it wasn’t and were still trying to work out what was going on. He got worse and worse with the pain breaking through and waking him out of sedation. In the end they asked for my permission to give him a drug that would put him to sleep for the rest of his life. It was the only way to stop his pain. I felt like I died at that point. I had in effect put him to sleep. They withdrew everything other than the pain meds and this new sedative, even withdrew fluids. And it took 4 days for him to die and even sedated you could see the pain on his face all that time. If I could have ended it for him quicker I know i would have but they kept assuring me it would be quick. I feel evil that I sat there holding his hand watching him starve and dehydrate and I didn’t do anything. I should have. What kind of monster am I. !! I don’t think I’m really here anymore. I’m taking care of his affairs and the funeral is arranged (5 week wait!) But I feel that I’m shutting down like him. I can’t eat - haven’t kept anything down since he went. I slept 20 hrs a day right up to 4 days ago and I haven’t slept since. Is this my punishment?
Sorry for writing this all down but I haven’t said this to anyone but I think I’ve realised i want to live . And I feel even more guilty about that.
Dear Mandalina, what a time you and your partner have had. I Lost my husband to cancer also, it just took over his body, it was also in his lymph nodes, you could see the growths grow daily, the hospital withdrew treatment and within 6 days he was dead.
I don’t think you are a monster, you have been so brave and thought about the pain snd suffering your love one was in and made the decision the professional advised was for the best.
Please please do not torture yourself with thoughts you didn’t do your best for him, you did.
Once treatment was withdrawn Ian wanted to come home from hospital, he had been in for 5 weeks and he did but only for 4 nights, he was so agitated I couldn’t cope, so he went into the hospice, he died the next day. I know I did the right thing getting him into the hospice as he wasn’t agitated, his final hours were so quick and peaceful.
Have you attended Maggies, if you don’t have a local one you can make a phone appointment to speak to someone, I find this helps a lot.
Please speak to someone, even your doctor.
@Mandalina
I’m so very sorry for your loss, I am in the same boat as you with the not eating and not sleeping and hearing what you guys went through, I fully understand how you have slipped so far, I can only hope and pray you can find strength and help at this horrid time.
Wanting to live is what all of us should strive for I’m pretty sure our partners would not want us to be in pain for even a minute.Its not a punishment its just our reacting to the loss of the loves of our lives.
I hope you will find help and advice to make your journey a good one.
Sending you a hug x
Dear @Mandalina I am so sorry that you had to go through the dreadful events that cancer imposes on us. Your story has reminded me of what my wonderful husband endured and the emotions that racked my head watching this cruel disease do it’s worst. Nothing prepares you for “the end” when I think of my handsome husband reduced to a skeleton unable to do anything for himself and then watched as nurses removed his fluid drip leaving him to dehydrate is one of the cruellest things I have ever witnessed. I still don’t know how this is allowed to happen in a civil society. Thankfully I can block those images out most of the time but it’s taken 5 months.
Please don’t feel guilty as you have done nothing wrong for me I blame politicians for allowing this barbaric process to continue despite numerous petitions to allow dignified end of life
Jen