In February Mark’s wife, Samantha, 38, was given end-of-life care by our In-Patient Unit team. Samantha lived with a brain tumour for almost all of her adult life and the couple had been supported by our Willen at Home team during her final months. Inspired by this care, Mark is taking on an abseil challenge in May to raise money for the Hospice.
Samantha and I first encountered Willen Hospice in May last year, when she was told that there was no more treatment available. She was given three to nine months to live, and by November she was bedridden.
“As 38-year-olds, nobody really seemed to know what to do with us.”
Amongst the multiple agencies and teams I was dealing with, I can honestly say that Willen were on top of their game. As 38-year-olds, nobody really seemed to know what to do with us, but also there’s a maze of bureaucracy that the Willen at Home team helped us with.
Always smiling
Samantha was always very, very happy. Always smiling. She’d always been like that even though she clearly had a lot to deal with.
In 2008, when Samantha was 21, she was diagnosed with a rare type of brain tumour called an oligodendroglioma. She had surgery to remove what they could. A few years later she started university in Coventry to become an occupational therapist. While she was studying she had radiotherapy and chemotherapy.
The year she graduated in 2017 was also the year we met. Despite everything she’d faced, she went on to work as an occupational therapist for the national brain injury charity, Headway, and a specialist neurological care provider.
“She never let her illness get in the way of anything…”
In summer 2022 we got engaged. But once again the tumour changed. In the following years she had more chemotherapy and radiotherapy, finishing just weeks before we got married in June 2024.
She never let her illness get in the way of anything, although I think it was particularly hard for her during her degree. Because of the way the tumour was affecting her, she knew that she could only ever work part-time. She spent her career looking after other people with brain injuries. Then, unfortunately, it was her turn to get that care herself.
Much-needed support
When Samantha started receiving palliative care, I didn’t think I would have to be juggling so many different professionals and companies. And working out who did what. Knowing who you’re meant to speak to isn’t as simple as you think. Willen at Home were able to explain things properly, chase things up and get them done.
Without the Willen at Home team, we would have really struggled with arranging and adjusting Samantha’s medication, as well as getting help in a crisis. One morning she took the wrong pills and fell down the stairs, breaking her pelvis. She was struggling to walk for a long time after that. Willen at Home were coming out to make sure Samantha was OK and help us arrange the support we needed.
“People don’t know that the Hospice is set up to offer so much wellbeing support for patients and their families.”
Then there are all the other services that people might not know the Hospice provide. Samantha had six or seven sessions with a clinical psychologist, Laura, which she found really helpful. First at the Hospice and then Laura came out to our home a couple of times as well. A complementary therapist came out to give Samantha a massage while she was bedridden. People don’t know that the Hospice is set up to offer so much wellbeing support for patients and their families.
Helping fund care
I joined Milton Keynes Rugby Club around 2010 when I moved to the city. The club do a lot of charity challenges through their Ring of Fire fundraising, which has been going for 10 years. To date they’ve raised more than £100,000 for the Hospice, which is incredible.
“I definitely think that as a community we need to help fund Willen Hospice.”
I’d successfully avoided being talked into any of these challenges until now! On Saturday 9 May I will be abseiling down the world’s tallest permanent abseil, the National Lift Tower, which you may have seen overlooking the Northampton Saints rugby ground. It’s 418ft (127m). I’ll be raising money for Willen Hospice and a couple of other charities that I support.
You can’t really train for an abseil, but I’ve done the world’s highest bungee jump in the past. I’m hoping that having jumped off a bridge twice as high as this, I should be OK.
I definitely think that as a community we need to help fund Willen Hospice. I remember seeing the amount of NHS funding that the Hospice gets in the local paper not so long ago. My immediate thought was that it didn’t seem fair. Samantha and I heavily relied on the Willen at Home team over the last year, so I know first-hand the difference their care makes.
You can find out more about Mark’s abseil challenge at https://localgiving.org/fundraising/RoFAbseilMark
