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“I’m hoping that this year we get to spend Christmas at home together and it feels like a proper celebration.”
Last December, David and Danielle and their two children had a calendar packed full of Christmas celebrations. “Like any family with young children, it was a busy time and we had lots to look forward to” says Danielle.
But on the 6 December 2019, this all changed. David, who worked full time in London, was commuting home when he had a massive seizure on the train.
He was rushed to A&E where a scan revealed he had a brain tumour. “From A&E, David was admitted to hospital where he had a craniotomy to try and remove the tumour, which they hoped was either benign or low grade,” explains Danielle. “When he woke up from the operation, he seemed his normal self – it was amazing; but then the next day things started to go wrong. The pressure in his head kept going up and he was becoming less and less responsive. He was taken for emergency surgery and the next time I saw him, he was intubated on the Intensive Care Unit.”
It was while David was in Intensive Care that the family received the news that the tumour was in fact a grade 4 glioblastoma. “From that point his prognosis wasn’t great,” explains Danielle. “It was a scary time for all of us. He had multiple emergency interventions and no one was sure if he was going to wake up and start responding. It was a big relief when he did eventually start breathing for himself and was able to respond to the instruction to squeeze our hands.”
On 23 December, David was still very unwell in hospital – the operations had left him completely immobile and unable to communicate – and the family were trying to work out how they were going to celebrate Christmas. “We were really stressed about how we were going to manage Christmas with the children as the ward had such strict visiting hours and we didn’t want to leave David alone,” says Danielle. “So, it was a big relief when we were given the news that St Barnabas House had a room for David.”
“David was transferred to the hospice for palliative care on Christmas Eve, and as soon as we arrived, everyone was so kind. Even though there were going to be six of us, they offered to cook the whole family Christmas lunch the next day. They wheeled in extra tables and we enjoyed our food together around David’s bed. David couldn’t swallow at this point, so the catering team pureed all of his Christmas dinner and shaped each of the ingredients to look like the food on everybody else’s plate. It made it feel like I was really feeding him Christmas dinner rather than puree, which, alongside a safe space for the children to open their presents next to their daddy, somehow helped to make the day special for us”.
“By the start of the new year, the nurses and the rest of the care team had got to know us all really well – always chatting and having a laugh. Small things they did made a big difference, like putting on music while they were giving David bed baths to make it a nicer experience for him. David is a sea shanty singer, so they’d play his favourite sea shanty songs which everyone got to know really well!”
David continues, “I couldn’t remember a lot of what happened at Christmas, but as I started to feel a bit better, I was surprised to find that the hospice wasn’t a sombre place, it was noisy and there was a lot of laughter. I had visitors most days and no one was ever told to ‘shhh’ – my friends were even encouraged to play their guitars in my room. Everyone was just so nice and welcoming.”
“It was wonderful to see what a positive impact the hospice was having on David’s recovery and wellbeing,” says Danielle. “After David became very unwell again in January 2020 he had to go to hospital for another emergency operation. He was lucky to be able to return to the hospice following this surgery and it was startling what a calming effect the hospice environment had on him. Within a few minutes of entering the building his whole demeanour had changed, he looked more relaxed, happier, and appeared far less sick. I also don’t think I’d anticipated how positive the environment would be for the whole family; the children looked forward to visiting David and the building felt like a soothing space for all our anxieties during that uncertain time.”
“David had a huge amount of support from the Therapy Team. Alongside the nursing team they worked with him through all the stages between being completely immobile to finally moving with support,” says Danielle.
“The physios, occupational therapist and therapy technician always put up with his craziness and joking around, and when they found he didn’t like doing his exercises much, they used things he enjoyed doing to make the exercises more appealing. Like trying to strengthen his arms using table tennis bats and getting him to bounce the ball on the bat to improve his hand eye coordination. They even got him boxing!
“As David started to stabilise, the aim we worked on with the Therapy Team was to get him as mobile as possible to eventually come home. I remember the first time he sat in a chair felt like such an achievement as it opened up possibilities then for maybe using a wheelchair.
“David had his own aims all along though and he liked to set the Therapy Team challenges!” laughs Danielle. “I was determined to walk again,” says David. “It was a slow process, but I went from using a hoist to help me sit, to another hoist to help me stand. From there, once I got stronger, I could pull myself up which meant I could use a frame. In March, my third month at the hospice, I was able to use my frame to walk around the nurses’ station. That was really exciting.”
“A few days later, David was able to return home for the first time since he’d had his operation in December,” says Danielle. “We were so happy to have him home and the hospice made sure we had everything we needed – from help applying for money for carer’s support to equipment like ramps, hand rails and a wheelchair.
“When the country went into lockdown less than two weeks later, we had to reduce support to the bare minimum – but the Therapy Team continued to visit and support David. By this point, they felt like part of the family.”
David continues, “With their help at home, I was able to start using different height frames, then crutches and then walk unaided again. But, one of the biggest breakthroughs came when I was able to leave the house and go to the beach with the whole family. With support from the Therapy Team, I was able to step into the sea which felt so amazing.”
“Things have continued to gradually improve, and the last couple of MRI scans have shown that the tumour hasn’t grown for at least six months,” says David.
“Although I can’t do a lot of what I used to, I’m managing longer walks each day and I’ve been starting to cook again and play my guitar a bit.
“My main goal at the moment (as well as getting back to playing table tennis and kitesurfing!) is to return to my job, where I used to manage a large team of software engineers. To help me with this, the Therapy Team have referred me to the community Neuro-Rehabilitation Team who are helping me with the cognitive aspects of my recovery.
“In the short term, something I’m really looking forward to is a more normal Christmas this year,” continues David.
“But we also feel a bit nervous about making too many plans,” adds Danielle. “I think that’s because we had so much organised last Christmas that didn’t happen. Christmas at the hospice was as lovely as it could be last year, but I’m hoping that this year we get to spend it at home together and it feels like a proper celebration.
“Even though we hope we won’t need support from the hospice this Christmas, it’s comforting to know that St Barnabas will always be there to support us when we need them.”
You can help support families like David’s by visiting donate.stbarnabas-hospice.org.uk