For Chris Green, 46, the fact that his children Tom, 15, and Florrie, 12, want to come back to the place where their mum died sums up what the Hospice means to them all. Here, he tells their story:
Sarah, my lovely wife and a wonderful mum to our two children, was a fit, healthy 44-year old when a sudden seizure in the middle of the night in September 2012 turned our lives upside down.
What started out as a tiny dot on a scan became a growing, inoperable brain tumour. I’ll never forget the way we were told by the neurologist at Luton Hospital. ‘Only the fortunate few survive,’ he said.
I remember Sarah’s words as we sat in the car park. ‘I’m so sorry,’ she said. It didn’t seem real.
Radiotherapy started in March 2013, followed by chemotherapy through to October. She had moments of forgetfulness and confusion and had to give up her job as a learning support assistant. But on the whole, she was OK until January 2014, when the results of a further scan - which we’d waited until after Christmas to hear - revealed that the cancer had spread.
They tried her on a different course of chemotherapy, but just a few weeks into it, Sarah woke up one Monday morning after a weekend-long headache and was unable to get out of bed.
Her mum came down from Ormskirk in Lancashire to stay and an occupational therapist from Grove House visited to help us with adaptations like extra bannisters and bath supports. But Sarah was increasingly poorly and two weeks later, Grove House phoned The Hospice of St Francis to enquire about a bed.
Sarah was mortified – she thought that if she went in she would never come out. But they said it would just be for a few days so they could sort out her medication. Reassured, she was admitted 48 hours later.
We had no idea what to expect but I’ll never forget feeling very lucky that Dr Ros Taylor was on duty that Sunday. She sat with us for a long time to learn about our family and how the cancer had affected us all, which immediately put us all at ease.
Ros ensured that everyone knew our names which surprised the children the first time they went to the hospice. The surroundings were lovely. The food was great and Sarah could enjoy it because very quickly, they had managed to control her sickness and headaches.
I’d come in every day once the kids had gone to school, staying until 9pm, and the kids would come in with Sarah’s mum after school. They had pony rides in the garden, Tom and I joined the six-week Teen Cooking with Chris Course, which uses cooking as therapy on a Tuesday night, and Florrie joined Drawbridge.
The horrible vulnerability and worry I’d felt about caring for her at home and not coping if she’d had a seizure or a fall was replaced by a feeling of being cared for and of belonging for us all.
We talked with Polly, the social worker, about next steps and the possibility of Sarah coming home, but Sarah was becoming less and less mobile and her sight and memory were deteriorating.
Three weeks later, she was too ill to have her next bout of chemo. However much I clung to the hope that she would get well enough to have it, on 21st March, with her mum and me at her side, she quietly slipped away, but I know for a fact that she wasn’t in pain.
Just four days after we lost her, Tom and I came back for Cooking with Chris. They hadn’t been sure whether we’d come, but Tom absolutely wanted to and we carried on until the course finished in May.
He loves cooking and the course gave us the opportunity to spend time together, just the two of us. The focus, very cleverly, is on food and Tom loved being able to boss me around in the kitchen.
He also asked to start coming to Teen Drop-in at the end of September when he found it difficult around the time of Sarah’s birthday. They sit and chat and drink Coke and eat sweets but it’s that shared bond, the fact that there’s no elephant in the room and the fact that they don’t have to put on a front, which I’m sure is what appeals to them.
Florrie loves art and when they asked if she’d like to come to Drawbridge, an art therapy group which meets every other Wednesday, she leapt at the chance, in the same way she did when they invited her to come to the Pony Days, which she’s been to twice.
Florrie after Drawbridge with her Dad
Florrie never really talks about how she feels and I worry that she stores things up. She still likes to hold my hand when we go out and for me to kiss her goodnight. Through activities like Drawbridge she can express herself and, very expertly, the supportive care team can read between the lines.
Sarah was such a lovely warm person – a really tactile, caring mum - and that’s what they’ve lost and that’s what I find so hard to do in her place. I’m just so sorry that they’re in this position and there’s nothing I can do about it.
I say to them both that we have to look after each other and that we’re a team. Tom has grown up so much in the last year. He had some English homework and he was going to write about cars but couldn’t find enough to write about. Instead he wrote about cancer and said that the three of us had become closer, which was really nice.
He’s very good with Florrie. He wouldn’t admit it but secretly he likes being the big brother, making sure she’s OK. Being three years younger, Florrie of course looks up to him.
My way of coping has always been to keep busy but I was finding it really hard to do everything and be everybody. I needed a vent for my feelings so in September I started having one-to-one therapy, where I could say things to a stranger that I couldn’t say to relatives or friends.
It’s hard to believe that it’s just over a year since Sarah was admitted to the Hospice, but what stands out for me is that even though their mum died here, the children have never not wanted to come back. More than a stone in a graveyard or a garden of remembrance, I think it’s the link that this is where Sarah was and where we all were for those last five weeks of her life.
I can never thank the Hospice enough for providing such fantastic care for Sarah and for continuing to provide support for families like ours, allowing us to maintain the bond that we all feel so strongly.”
Muddy Team Sarah with Chris second from right at our 2014 Mud Pack Challenge