When Pam was diagnosed with renal cancer, she remained positive throughout 14 years of experimental treatments. Even in the weeks before she died at the Hospice in September 2016, she made sure she enjoyed the time she had left with Tony, her daughter Emma and son-in-law Josh, who is now a nurse at St Helena Hospice. Emma shares the family’s experience and how her mum’s legacy lives on…

My mum was really interested in people. She had something about her that everybody was drawn to. She was great fun but I think it was more that she was selfless, just interested in everything that everybody else had to say. At her funeral, people that she'd worked with 40 years ago came because either she’d checked in with them once a year or she just meant a lot to them, it was so packed. That's what she was like, she was all about the people and she was a really brilliant mum.

Mum had cancer for a very long time and near the end once she became palliative that's when we got involved with the Hospice. The first time she actually went into the Hospice was in May 2016 and she went there for about a week for symptom control. That’s when the Hospice came on my radar for the first time because when she went there, she was absolutely full of beans about it. Mum always saw the positive in everything. When she heard she was going to the Hospice, she thought it'll be interesting to see what it's like but not really having any expectations. 

So she still got to be involved in all of that which makes a real big difference when you're... she didn't really vocalise it, but she must have been feeling a bit down about it and a bit scared, so just to have a bit of a laugh and do things that you enjoy makes a difference.

It was brilliant to have her on the end of the phone texting while she was there. It took some of the fear out of it for me as well because you're not worried about is she getting enough sleep, is she comfortable, is she worried about looking after us? She was literally saying ‘I'm having fun!’ which you don't really expect when you hear she’s going into the Hospice. It meant she could be herself, which is a bit of a relief and it was nice that she was able to enjoy herself and it made the whole thing less stressful.

Mum made friends with one of the other women that was on the ward with her. They pushed their beds together and their chairs so they could have their tea together in the evening. She would spend most of the time with the lady, who I think was a bit of a character too, sneaking off to have a cigarette and things like that; they were like a double act in there so that was really funny.

She’d get on with anyone anyway, she was just that sort of person, but the staff responded really well and they’d have a bit of a laugh with her because that’s what she wanted to do. It was like a breath of fresh air for her because the cancer was just going on and on and on and on. 

She couldn't get out of bed to begin with and the nurses wheeled her outside so she could spend some time outside in the garden. She absolutely loved it, full of beans about it.

It's very difficult to tell if she was feeling scared looking back, because mum was probably the most selfless person I can think of. She never made a big deal about herself. It was always about how she was affecting other people, so she never really complained about anything at all. We used to be a little bit jokey about life and death and all those sorts of things pretty much my whole life. It was never a taboo subject so we knew ‘hospice’ does mean end of life, but we'd known about it for a long time. I feel like before she went in, she was a little bit deflated thinking we're now at the point where I've got to go and spend some time in the Hospice but then once she was there, she was more like this doesn't feel like end of life, this just feels like a great experience and great care. 

So that probably helped her the second time when she was coming back for her final days, and by then she really, really wanted to be at the Hospice. Again, thinking of other people, she had always said that she didn't want to die at home, she wanted to die in hospital or at the Hospice because I think she didn't want to be a burden on anyone. Once she’d been in the Hospice, it became clear because it was good for everyone else and it was such a positive experience for her, and actually she really got something from it as well, which was nice that she could actually think about herself.

We got quieter about dying and death the nearer it approached, but all through my life we used to talk, when I die, this song is going to be at my funeral or this is what I want. We were open and my mum was always very passionate about organ donation, helping other people, so we'd always spoken about those things. When she got cancer, she made sure that we all knew exactly what she wanted; she’d joke what she actually wanted was ‘don't spend any money on a funeral, stick me in a white Transit van and then go have a party!’ But from that point of view, she was talking about it! 

As it got a little bit nearer to the end, it must have been scary for her as she didn't want to talk about it as much then but by that point we all knew what she wanted. That takes a lot of stress out of things later on if you're already prepared for what someone wants, whether they want to be cremated or whatever, and then you just don't have to have that as an additional thing to worry about on top of the fact you've actually just lost someone.

She started off with nurses at home, they were all fantastic. They gave a lot of advice about finances, which is advice my parents were not expecting to get from the Hospice but yet another thing they can do to help make things easier. After she'd had her stay at the Hospice the first time, she started to need a lot more equipment at home so all of that was put in place by St Helena and that was really helpful.

The cancer had spread from her kidney bed to her lungs then it got into her bones and that was when it started getting quite unpleasant for her because her bones were breaking and that wasn’t nice. That was hard to see because she'd been so positive the whole way through. She still never complained but you could just see in her face that she was in a lot of pain. It is very hard watching someone lose themselves if what they are to you is very loud and chatty and listening to you and making jokes; once they stop doing that it is very hard because you feel like you've lost them before they've gone.

Every now and again she would perk up a bit and she'd be able to have a bit more of a chat, a conversation. But you could definitely see for the last month or so there was a real step change for her and it was just sad to know that it was coming. In a way I feel like if she'd died when she was really bright and bubbly, that almost would have been worse. This way it felt like you could say it was time, she wouldn't have wanted to carry on being in pain. There's no making it nicer, but there are lots of things you can tell yourself to make it seem a little bit better.

My dad died about 15 months after my mum. He was absolutely fine, felt like he’d got the flu and he just died in his sleep. So that was a lot harder coming out of nowhere and having nothing to deal with before it, so actually with mum, it wasn't nice to see her in pain but it felt much more natural when she went, and you could just think it's better for her now.

Right at the end, the Hospice gave us a lot of notice which we really appreciated. We had our own side room and we could play music, I don't know whether she could hear at that point. I sometimes think that the people walking around outside must be like what is going on because we'd got The Beatles and Jimi Hendrix and all that sort of stuff playing in her room. She and my dad were very into music and Jimi Hendrix was her ringtone so we knew that would definitely be on the playlist. It made a horrible experience meaningful and more personalised and easier to get through.

Much later on I called up because they had said they have a counselling service and help with grief, and I had struggled probably for the first year afterwards. At the time where we were living came under another hospice so they gave me all the details and got me in touch with them for counselling. I would definitely recommend counselling to anybody because I think it just helps you decompress and talk about things. My dad and I liked to talk about my mum a lot but he found it really hard and upsetting, as we all did, and you certainly don't want to talk about it to the point that you're upsetting someone, so it was nice to have someone else to go and talk to.

Everybody is different and everybody needs different things but the universal thing is that the Hospice will help regardless of what you need. If you need emotional support, then they were great at that. If you need it to be a place of laughter and enjoyment with your loved one, then you can have that. That's what my mum needed but equally when it was coming to the end and we needed support and help and a shoulder to cry on, it was that as well. The Hospice needs to be about death, but it doesn't need to be all about death, it doesn't have to be sad and depressing. With all of the things that the Hospice does, it's about living well as you're dying as opposed to just being about death and dying.

The people the whole way through made a really big difference from right at the beginning when the Hospice nurses would come to the house. Everyone is very good at reading what people need because while you're sitting in the ward you can see other people were not in the same sort of headspace; the nurse would come and have a laugh and joke with my mum and give her what she needed, and then you'd see them go across and just almost completely change and just be what that other person needed as well. That's a talent and a skill that you probably can't really teach, but they've acquired very good people at St Helena that are able to do that and I think that's worth a million. 

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