Monday 8th May to Sunday 14th May marks Dying Matters Week. This week-long celebration encourages us to speak up about death, dying, and bereavement. So, we can make it easy and more comfortable for people to talk about their death and concerns after they have passed.
In honour of this we are sharing Emma’s heart-warming story. She sadly lost her mum to renal cancer in September 2016. She remained positive throughout 14 years of experimental treatments. Even in the weeks before she died in the hospice, she made sure she enjoyed the time she had left with Tony her husband, 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.
She spent the evening there and I spoke to her the next day and she said ‘oh it's like a hotel, the food! I've had salmon, I had salmon to eat!’ She said it was beautiful there and ‘I can get in a bath here and they’re going to wash my hair and they came round and offered me a drink in the evening’. She absolutely loved it and listed off these things. Getting ‘proper food’ as she called it, food that felt palatable to her when she was feeling so poorly, was very special.
The bath and having her hair done too was so special. She’d been in hospital for a while and before that we didn't have a bath that she could get in at home, so the fact that she could have one at the Hospice was wonderful. It’s those little touches, like every evening they used to come round and say would you like a drink? She said it just felt then like she wasn't ill, she saw it that ‘I'm dying soon, why would I be watching what I eat or watching what I drink’, so the fact that she could have a glass of wine in the evening was just great.
As long as I can remember we've loved watching Eurovision together, all very cheesy which is very much our cup of tea, and we used to have our Eurovision drinking game so it was always like a big party. During her first time at the Hospice, Eurovision was on and she said ‘I've told them that I'd like to watch Eurovision and they said yes fine’. The staff wheeled her into the family room for the evening with the telly on and a glass of wine and then we were messaging each other throughout, oh pyrotechnics, great, have a drink!
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 will continue with Emma’s story throughout the week. Keep an eye on our socials to read more.
If you know anyone that is struggling with a life limiting diagnosis or has lost a loved one, visit the St Helena Hospice website to see how they can help you too.