“This is my story about me and my husband Robin.”
Robin got ill in August last year. He had Deep Vein Thrombosis in his legs which made him very unwell. Then on the 4th October 2017 he was diagnosed with Pancreatic Cancer. The doctors didn’t use the word terminal but it was stage four Cancer so at that point our whole life changed to focus totally on Robin’s care.
The first touchpoint we had with Sobell House was when I met with a neighbour whose wife had cancer. He told me that a Sobell House Community Nurse had been a great support to them, so I proactively got in touch.
Ali Flint, our Sobell House Community Nurse became our lifeline over the next two months. She came to our house on a weekly basis. We used to look forward to meeting her and we always had so many things we wanted to ask her. She was the person in the medical profession that we’d always want to talk to first. I cared for my husband but he was very strong minded and he had very good contact with Ali. We worked really well as a team.
Ali was the lifeline for us right to the end. The Community Nurses are ideally positioned between the medical profession and their patients and families. They’re on the ground and are very pragmatic. They come in and listen to what’s happening at that point in time, and are very good listeners.
The advice Ali gave us was very practical – I have a funny story about this. When she first arrived my husband said to her “Hello Ali, thanks for coming, now can you help me to have a s**t!”.
The Community Nurses also support the family. They ask lots of questions, for example are there children in the home and what impact is it having on them? They’re looking ahead at the long term impact this illness has on the whole family. It was really helpful for me as a carer to know I had that support. She’d always ask me “how are you, how are you coping?”, and assess whether I was in need of extra support or whether Robin needed additional medical help. She played a crucial role.
I was really worried about what would happen at the end; how I would know what I needed to do. I’d had some advice from other charities like the Pancreatic Cancer UK helpline but when my husband fell off his bed and couldn’t get up again I realised I needed extra help.
I called Sobell House and spoke to Ali who put Robin's name forward to get a bed in Sobell House. She told me they’d send an ambulance within 4 hours. I’d not been through anything like this but it was as smooth as it could be in that moment.
The idea that Robin would have to go to a hospice in his final days was something I found really hard to get my head around; I just wasn’t ready for that. But the hospice is a very nice space, very clean, very spacious, lovely colours, a lovely space outside.
When we got there Robin had his own room, and we filled it with the things that Ali had suggested I bring like photos and personal items. The room was amazing, I almost cried because Robin loved golf and it was overlooking the golf course. It felt like a luxury compared to a hospital.
My husband passed away within 24 hours of arriving at Sobell House. The end was very moving, very difficult but it was a very peaceful experience with the support of the Sobell House team. They were unbelievable. They looked after Robin and they looked after me and the kids. At that point I knew what it takes to care for someone and so I was in awe of their work. It was very quick but it was such a relief for me to have the medical professionals with me. It meant I could just be there to hold his hand.
Although Robin’s death was obviously not expected and very sudden I would say I got all of the care that I could have, and so did my children. I cannot give any more praise really.
I came into Sobell House a few days after Robin died and collected all the paperwork that I would need. The person I met was very caring and they talked to me really calmly. That was really nice as I was in a very fragile state.
I was contacted by the Sobell House Bereavement Support team afterwards too. It was a few months later and the phone calls from friends and family had started to die off so having a proactive call at that stage was really nice. It was good to know that someone is caring for you and wants to help you. The man I spoke with also said he’s available for my son who is 18.