“My husband’s wish came true – he was at home and pain free when he passed”

Neil went in for a colonoscopy and they couldn't even do the test because the tumour was so big. He ended up having an emergency operation to have a stoma put in and started on a course of radiotherapy.

This damaged his bladder, so he had to have bilateral nephrostomy   tubes attached to his kidneys to drain urine. It was incredibly painful. He couldn't lie down because of the nephrostomies or lie on his side because of the stoma.

It was one thing after the other for the next two years

His stoma got blocked and he ended up in hospital, where we were told he wouldn't make it to Christmas, but he fought on to January. He was then accepted for a full pelvic exenteration  . He was in hospital for about six weeks and there were times when it really was touch and go.

Three weeks after returning home his stoma got blocked again. The hope was that it was scar tissue following the operation, but unfortunately the cancer had returned and spread. It was then that he was placed on palliative care.

All Neil wanted was to be at home

Having spent so much of the past two years in hospital, Neil wanted to spend whatever time he had left at home with me and his daughter. So a mountain of medical equipment in boxes turned up at our house and I was trained to feed him liquid nutrition and fluids.

I just remember our home being like a hospital and everybody saying to me, "Are you okay? What about you? Are you sure you're okay with him being here?" I was like, "I'm alive, I'm healthy, this is all about him and what he wants. That's all that matters."

I've never seen anyone die. No one talks about it, no one prepares you for it all. I didn't know whether I was going to wake up one day and find a dead body next to me. And for it to be that person, my person. The thought's too horrific to bear.

I was getting less than an hour's sleep a night

At least every two hours Neil was in blinding pain and required pain relief. You can't book these injections in because the district nurses cover such a huge area. When they knew he needed them, they told us that they would floor it to get to us.

It was the nights they were most concerned about, which is why we were referred to Marie Curie. I've never seen anyone in that much pain, so when Marie Curie called and said, "We're sending you a nurse tonight." I just burst into tears.

Looking back, I have no idea how I was functioning. To know Neil wasn't going to be screaming in pain and there was someone that was right there next to him to give him pain relief, that feeling was indescribable.

A sense of peace, calm and love pervaded our house

Marie Curie was unlike anyone else on his journey. I'd been doing everything for him and knew exactly how things needed to be done – and Marie Curie just got it immediately. The sense of care they had for Neil; I can't even put it into words.

I slept on the sofa next to his hospital bed, and I actually slept! They sat in the chair right next to him watching him the whole night. And he finally relaxed and slept too.

The only way I could describe it was like being helped by angels, because it just happened, and we didn't have to do anything. It's the most incredible gift anyone can give you. They're special people. I could see that Neil had trust in them as well which meant everything to me.

Neil's wish came true

Neil was at home and he was pain free when he passed, and that's all he wanted from the start. You just can't ask for more.

When the district nurses came to take his syringe driver off after he'd passed, they said that they'd lost another three or four patients in the same night and some of them had passed in a lot of pain.

Had Neil not had Marie Curie care, I can't begin to imagine the emotional and mental state that I would be in now. Grief still lives with me, but I can manage it and I know that is in part thanks to the Marie Curie Nurses.

It's almost like they've joined your family. I struggle with strangers in the house and when it's that person in that state, to let somebody else look after them and to trust their life in their hands is very difficult. But the way they talked to him, they genuinely cared. I even had cards from them.

The gratitude is pushing me to give back

In recounting this story, it's not the fact that my husband died that brings the tears, it's the overwhelming gratitude for all that we were blessed with.

We were proud people who just got on with things by ourselves, but we needed help then – we had no choice. And we didn't have to ask for it, it was just there, and in exactly the right way.

It's that gratitude that is now pushing me to give back in a way that makes me feel good, that makes my heart sing. I'm guided a lot by that feeling now.

I volunteered to be part of Marie Curie's Information and Support service because I was desperate to give back and support such an amazing organisation. I want to be able to support others and say, "This is what my husband went through, it's okay."

Everyone deserves to be cared for at the end of life, but sadly one in four people won't get this care.

You can help every husband, every Neil, everyone, get the end of life care and support they need. Donate to the Great Daffodil Appeal today.

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