‘My son was the youngest person in the hospice where he died at 20 – now I volunteer to make the ward a brighter place’

A mother from Kent has spoken about her experience of what she calls “the walk from hell” through a hospice to say goodbye to her 20-year-old son, an ordeal that has since inspired her to help other families facing similar heartbreak.

Kirsty Boles lost her eldest son Jack – who she described as her “best friend” who had “an amazing smile” – to cancer in 2021, months before his 21st birthday.

She said the walk down the corridor to see her son in the Hospice in the Weald for the first time is a vivid memory that she won’t ever forget.

“Jack was the youngest patient there at the time. There was this long corridor on the inpatient ward, and that was the walk from hell for me. It’s a long walk, it’s a tough walk,” Kirsty told PA Real Life.

“Before I’d even walked into his room I just broke down and one of the nurses had to take me outside.

“But the way it looks didn’t match what it was like. There’s a lot of love on that ward, everyone who works and volunteers there goes above and beyond.”

The mother, who now volunteers at the hospice three days a week, said her whole world came crashing down 18 months earlier when Jack received a diagnosis for acute myeloid leukaemia, a rare form of blood cancer, aged just 19 in July 2020.

This came as a shock, as the few symptoms he had shared with his mum at the beginning were extremely subtle: shoulder pain, tiredness and swollen testicles.

“In 2020 he started experiencing shoulder pains which we initially put down to sleeping awkwardly, and we thought all the headaches and tiredness were because he was up late playing games,” said Kirsty, 45.

“I remember during Covid I met him for lunch and he said: ‘Mum, my balls are swollen’.”

At first, they brushed it off as a possible STI, but later that day Jack was sent home early from his floor manager job at the local Wetherspoons. Later on that day blood tests at Maidstone Hospital revealed that he had leukaemia.

“You hear the word cancer and I think the whole world falls apart… everything stops,” Kirsty said.

“It’s scary. Everything changed after that phone call. The cancer was in his lungs and his heart… it was everywhere.

“I got a lift to the hospital at one in the morning, and he looked like Homer Simpson… He was so yellow.”

Jack was in intensive care the following week, followed by seven months of chemotherapy at UCLH (University College London Hospitals NHS Foundation Trust) and the pandemic restrictions added another layer of frustration and heartbreak for the family.

“It was really hard as we had to choose who was going to spend time with him and had to do lots of Covid checks,” said Kirsty.

“We FaceTimed all the time, and for 18 months we had phone calls every day, and all of a sudden he passed, and it all stopped.”

Throughout the torturous year-and-a-half, Kirsty said she was stunned by Jack’s unwavering positive attitude, which only cracked the night before his bone marrow transplant surgery, which took place on his 20th birthday on January 5, 2021.

“He was amazing, he was like: ‘I’m alright mum, we’re going to be alright’. We are very proud of the man he became,” said Kirsty.

“I’m sure that he was petrified, but he didn’t show it, apart from the blip he had just before his transplant.

“He was a mummy’s boy, but was a typical Jack-the-lad. He had an amazing smile, liked the ladies and just loved life. We were extremely close; he was my best friend.

“The night before his transplant, he had a wobble. He said to me, ‘I’m scared of dying’ and I said ‘you’re not going to know you’re dead, Jack. It will be everyone else around you’. That was one of the hardest conversations I think that I ever had to have with him.

“After the transplant, he got the all clear, but six months later his balls started to swell again, and the cancer came back.”

When the family were told that he wasn’t going to make it to his 21st birthday, they held an early celebration that was attended by around 300 people.

“He loved that night. He was suited and booted and had his flat cap on,” said Kirsty. “We even got him a stripper.”

Jack was referred to Hospice in the Weald in Pembury in September 2021 and on the morning of his passing Kirsty and Jack had one final walk together, a core memory that is imprinted on Kirsty’s mind.

“The pathway hadn’t been finished, and he was in his wheelchair, and it was raining, and I walked him all the way down, and I was slipping and sliding while pushing in his wheelchair,” recollected Kirsty, who is mum to four other children.

“Later in the day we asked his friends to leave the room, and he sat in his chair, and each of our kids held onto a different body part. He sat in the chair, and they were all like, we love you, Jack, you’re the best big brother. Jack very suddenly couldn’t talk and he was nodding, and then had a massive smile, and then just passed away in the chair. He went peacefully.”

Two years later Kirsty decided to start volunteering at the same hospice to help other grieving families.

“If I can just help one family and tell them that it’s going to be alright, then I’ve achieved something,” said Kirsty. “I also wanted to prove Jack wrong, because I told him that I was going to start volunteering there and he said that I wouldn’t be able to.

“People that come into the hospice are petrified because they know that their lives are going to change when they walk out that door, because they’re not going have the person they came in with.

“I build rapport with them because I have been through it too. I’m living proof that you can move on. You never forget but there is light at the end of the tunnel.”

Although she loves the warmth of the people who work there, she is keen for this to be reflected in the interior of the hospice, so has been helping shape the hospice’s refurbishment plans alongside other patients, families, staff and volunteers.

The major transformation will see not only the ward, but all patient areas upgraded to better support patients for years to come. As part of the plans, the inpatient corridor is being transformed into a lighter, brighter and more welcoming space.

“I wanted to be involved because I don’t want people to experience what I felt,” said Kirsty.

“I told the architects that these people aren’t dead yet and that we need to bring the outside in. I hope it will make people feel completely different. There is a lot of love in there and it needs to be shown. It needs to be felt as soon as you walk in.”

Visit hospiceintheweald.org.uk for the latest updates on the transformation programme, along with fundraising news and events.