“We were on holiday in Scotland, we had only been there a few days, and we were walking up a slope to a viewing point. We had invited our friend along and when Douglas had trouble getting up the slope myself and our friend helped him – it was then we knew something was wrong.
When we got back from Scotland we went to see our GP who sent Douglas for some tests. We had planned to go on the holiday of a lifetime to New Zealand, but when the test results came back the Doctor said we should cancel our holiday, they had diagnosed Douglas with cancer of the bone.
He started radiotherapy treatment and with further investigations they realised that primarily he had cancer of the kidney and the cancer in his bones was secondary. It was like a bomb went off, I think we both went into denial and we found it really difficult telling the children. We had been dealt this hand and we had to decide what we were going to do with it, so we decided to do as much as we could while we could.
We had to travel to Bristol for Douglas to undergo his radiotherapy and this made him very tired, it was also a shock when his hair turned from brown to white. When Douglas was put on a new medication, we were very lucky as it gave him more time when his initial prognosis had been 14 – 18 months.
Our GP had referred us to the Hospice and we met Sue Gerry, Douglas’ Community Nurse Specialist. When the medication stopped working three-and-a-half years later and we were told it would be pain relief and TLC, I became Douglas’ full time carer.
I went to a course run by Sue which gave me new skills like how to manage Douglas’ nutrition and fatigue. It also helped being with people in a similar situation – Douglas and I talked about other things, he never wanted to talk about it, it was something he had and we were dealing with it. I didn’t want to talk about it – there was nothing I could do. When you’ve been such a strong person and see the look on his face and are not be able to doing anything about it, it’s awful.
After Douglas passed away I felt lost, I was wallowing in life, not living. I was invited to go to one of Sue’s ‘Buddy Groups’ by a lady I met at the Hospice Carer’s Course. She had been in the same situation with her husband. The Buddy Group was a chance to talk to people who were going through a similar thing. I felt guilty that I was still here when Douglas wasn’t, we all had broken hearts, it was the end of our world, but the group helped us all. It helped us survive!
When I found out about being a volunteer Community Companion I knew it was something I wanted to do. It was my way of giving something back for all the support Douglas and I had received from the Hospice. All the care in the world was there for Douglas, I had a lot of support and care from the family, but not everyone is as lucky.
I like to think of myself as an informal ear for someone who needs to talk. I’m just an ordinary person who has gone through a similar situation, I may not know all the answers but I can be a reassuring presence. I know what it’s like – sometimes you just want to get things off your chest and it can be difficult to talk to family as you don’t want to worry them. I offer guidance where I can, sometimes it can be a case of just talking through the options and what kind of help is on offer, then they can make the decision on what they think is best.
Trust is very important as a Community Companion. Anything anyone tells me is completely confidential, it means they can talk freely and in turn I can share my experience with them. I don’t want anyone to ever feel like they’re alone, I’m always a phone call away. I want to be there solely for the carer if they need someone to speak to and help them to access any support they need. I like to think of myself as a ‘carer’s carer.”
Community Companions are part of a new initiative aimed at supporting those who are providing informal care (often called ‘carers’). A Community Companion is a volunteer with significant life experience – many of them having been bereaved and provided care for a loved one. They can help those involved to create an informal support network involving family, friends, neighbours and the wider community. For more information, visit the Weston Hopicecare website.
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