Finding my way forward: Erin’s story

In April, Erin’s partner died from a brain tumour at their home in Frant. James was 53 and had received support from Hospice in the Weald’s Outreach Service. Here, Erin shares her story, from their love of the Lake District to the realities of grief.

“He was incredibly witty,” Erin says. “I think that was one of the main things that drew me to him. He was also very handsome, too. And outside of work, his great passion was rugby.”

Erin and James met at work, albeit different departments. Early on, they discovered a shared fondness of the same location. “Our happy place was the Lake District and just hiking and walking there. When we got together, we discovered the Lake District was special to each of us individually.” At the point of diagnosis and in the following weeks, James reacted differently to Erin.

She remembers: “We both went off in completely opposite directions in our emotional response during those first few weeks. He was just ‘it is what it is’. And I thought: ‘oh my god no. This is a nightmare’. I was in complete shock, complete panic, so I was trying to cope by being ultra practical, ultra logistical.

“I remember when James and I came away from the neuro-oncology unit, which is where we got the diagnosis, and we came back home, we’d already been triaged and referred to the Hospice for palliative care,” she continues. Hospice care was new territory for them both.

“I think I got a call saying that two people would come out together to visit us, to do a home visit. After the two lovely women left, James said, ‘Well, I just don’t feel I need the Hospice at the moment. You know, it’s too early. We’re doing fine. I don’t think we need them.’

“I was feeling, ‘Oh my goodness, I want a phone call from the Hospice every week’.”

The hurdles that faced – and still face – Erin have been varied and persistent. “The utter grief you feel when that partnership is ripped apart, there’s a particular kind of devastation because this love that you poured into this person who’s not related to you suddenly has nowhere to go.”

Support and structure have been important in the months following James’s death. “My friends are the ones who have blown me away with their kindness,” she says. The day after James died, Erin contacted a friend. “I made a list of 15 of my girlfriends and I said: ‘can you put all these people on one WhatsApp… I don’t want to be on my own.’ And for four weeks, I was not on my own, day or night.

“My children have been wonderful,” adds Erin. “They were brilliant on the day he died. A lot happened that day. Now they both need me to just be their mum. I have to get up and take them to school.

“I have to not cry all the time in front of them and just get on and make sure this house has singing in it. And the radio and cooking and laughter.”

Journalism is Erin’s craft but writing now holds a deeper meaning. “The one thing that has kept me peaceful, grounded and feeling safe is writing. And I think it’s just because I’m a journalist so it’s what I’ve always done; it’s what I’ve always been good at, so it’s what I come back to for solid ground.”

Hospice in the Weald provided support and care for James, Erin and her boys; something Erin takes great comfort from. She questions: “Why on earth do we have the hospice movement as a charity and not part of the emergency services, or as part of the healthcare network in this country, as a statefunded healthcare provision?

“Because to me, that support that we received from the Hospice from the word go was vital…to know that when we came out of the hospital with a terminal diagnosis, we would literally come back into our house, and already be plugged in to the hospice support system was so reassuring.”

Erin wants to continue sharing her experiences so that more people can learn from what her family went through, and her own journey now, which includes receiving counselling through the Hospice. “My one bit of advice is; sit with the loved one who’s dying. Be quiet. Ask them what they need from you, what they want from you. And be with them on the same page. Try to be with them where they are emotionally, rather than where you are.”

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