For Dying Matters Week, we are sharing Emma’s story on how she came to terms with the death of her beloved mum. She was diagnosed with renal cancer and kept positive throughout 14 years of experimental treatments. But, as time started to slow, the family knew that the end was close. Emma shares her thoughts on how her mum accepted her fate, and how she herself came to terms with the fact her mum would no longer be around.
“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.
I was 29 when she died and she had been ill for 14 years during my teenage years. I think it never seemed like that big a deal to me because I think Mum, in hindsight, was thinking of me and she was very clear about what was going on but she was never ‘oh, this is terrible.’ She must have felt like that because you can't not, but whenever she spoke to me it was oh bloody cancer sort of thing and almost making a bit of a joke of it.
Because she had lots of experimental treatments that kept adding time on for her, I didn't feel like it was hanging over me when I was younger, and because of the way she handled it, we just we talked about it quite openly, and this made it slightly less scary as a teenager. I feel like she did it for everybody else to make them feel comfortable about it, but she definitely would have got something out of that as well because when you normalise something it does become less terrifying, it just makes it a little bit more manageable.
She'd been in and out of hospital quite a lot in the months running up to the second stay at the Hospice because she'd broken a hip and her arm still wasn't quite right, she was very uncomfortable. When they said they were taking her to the Hospice, we were thinking ok, this could be it. She wasn't quite herself by that point and she was very tired, although when she first went back in she perked up a little bit for a little while and that was nice to be able to have a bit more of a normal conversation with her as opposed to sometimes when people are very tired, it's more that you're talking at them than with them.
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.
The staff were all really good, they weren't overbearing, they were just gently coming in and just checking things, reading the room for whether we wanted them to stay, whether we wanted to talk, and then they would just leave us to it.
I always remember the doctor was very, very good. I remember thinking what a horrible job this must be to tell people that this is it, I think she is about to die. But he did it in such a good way; he was very quietly spoken, he wasn't overly soppy about it, he was really clear. It just felt like if you need anything we’re here, it felt like we could ask him anything but we knew what was going on. It was a really good balance.
I can't remember what time she died, but she just sort of faded away. I know now that isn't always the case and people die in all sorts of different ways, and it's nice to know that it was just like a calm fading away that she had. So that was nice, as nice as it can be.
Afterwards I definitely didn't feel rushed at all, they gave us plenty of time in there together and then Josh and I went out and left my dad with her for a little while. I remember they just said when you're ready, come and let us know so we told them we’d said our goodbyes and then they took us to a different room and gave us a couple of leaflets, a couple of bits of information, didn't overwhelm us, and said if there was anything that we needed, they were there. A few days later, we pulled up and said, sorry, I'm not sure we took any of that in, this is what we've done so far is there anything else that we need to do? And they again were great. They just softly hold your hand through it.”
The final part to Emma’s emotional story will be posted at the end of the week.
If you know anyone in North East Essex 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.