A devoted father died just six months after a lung cancer diagnosis, despite being told he was “too young” for the disease.
Ben Williams, 37, was diagnosed with small cell lung cancer (SCLC) in January 2021 after experiencing months of severe pain above his hip.
His wife Anita Williams, 43, said doctors initially told them he was “too young for cancer” but by the time he was diagnosed, the cancer was stage four and terminal, and he was given a prognosis of 12 to 18 months.
While he underwent chemotherapy and immunotherapy, Ben’s condition deteriorated, and he was admitted to a Sue Ryder hospice, where he died in July 2021, aged 38.
After Ben’s death, Anita, from Winchcombe, Gloucestershire, realised she had few keepsakes capturing his life and is now creating memory boxes for other families facing terminal illness, while encouraging people to be more open about grief and death.
“I think the most important thing that people should understand about grief is that, yes, I might be five years in, but that doesn’t mean I’m OK,” Anita said.
“It has changed me and my life completely; I’ve lost everything.
“I’ve had to navigate my children going to university, finishing university, taking exams, finishing exams, passing driving tests and starting school on my own, and none of it’s easy.
“It just feels like one battle after another when you’re grieving and, while it does get easier, it’s an ongoing struggle.”
Anita first met Ben in a nightclub, aged 19, describing the story as “cliché” as they swapped numbers after catching eyes on the dancefloor.
The couple’s relationship progressed quickly, and they married in April 2004, before welcoming their first child Kieran, now 22, and their daughters Ella, 19, and Emilie, seven.
She said Ben worked as an electrician, was an “avid Manchester United supporter” and, in his spare time, he enjoyed playing cricket and five-a-side football games.
“He was such a laid-back person… and a real gentle giant,” she said.
Anita said Ben was “always fit and healthy” and did not have any health issues, until he started experiencing a “nagging” pain on one side, above his hip, in the summer of 2020.
He went down the “normal routes” of seeing his GP, who completed urine and blood tests, but she said doctors “couldn’t find out what was causing it”, adding: “You’re too young for cancer.”
Ben was then referred for physiotherapy, which did not improve his symptoms, and Anita therefore enquired about an ultrasound scan through the private healthcare she had with her previous employer.
“They said they could see something on his liver, but they didn’t think it was anything to worry about,” she said.
“We didn’t really think anything of it. We just thought, ‘Oh, well, at least we’re going to know what’s going on’.”
Ben then had a CT scan, which flagged “something in (his) lung”, and was invited for another CT scan in January 2021.
This follow-up scan revealed masses on his lung and liver, and, after a biopsy, the couple were called in for an appointment and told Ben had SCLC – a cancer Anita had “never heard of”.
“I remember sitting down… and I said, ‘What stage is it?’, and he said, ‘It’s stage four because we’ve found it in his liver and his adrenal glands’,” she said.
“Then he said, ‘I’m really sorry, but it’s terminal. There’s nothing we can do to treat this’, and I just screamed. Ben was holding me and I was wailing.”
Anita said she does not remember much after this, but having to tell the children was “absolutely horrific”.
She added: “I just thought, ‘This can’t be happening to us. You’ve got to do something. Surely, you’ve got to save him’.”
Ben started chemotherapy soon after, which helped to relieve the pain, and had immunotherapy – but after this, Anita said he started to deteriorate in June.
The couple therefore planned to renew their vows in August, before Ben started to lose his ability to swallow, walk, urinate and speak.
With Ben’s pain “out of control”, he was admitted to Sue Ryder Leckhampton Court Hospice, where he was diagnosed with another form of cancer called leptomeningeal cancer.
This meant his cancer cells had spread to the thin tissue layers covering the brain and spinal cord.
“It shut down his central nervous system from the inside, bit by bit, and those last four weeks were horrific,” Anita said.
“It was the most horrible thing I’ve ever had to watch somebody so big and strong go through.”
Anita said Ben did not talk about his feelings much, but he expressed that he would like photographs on his coffin and for his ashes to remain at home.
After around four weeks in the hospice, Ben died, with Anita by his side, in July 2021.
Anita decided to buy memory boxes to fill for her children, but she did not complete these until after his death – and it made her realise there were memories she wished they had captured together.
“I hadn’t thought about getting his fingerprints or handprints or his voice or his handwriting, or all the memories that he could remember that he wanted to write down or things he wanted to say,” she said.
“That was when I created the boxes because I knew there’d be other people who also couldn’t think about these things at that time.”
This inspired Anita to create A Box from Ben – a memory box designed to help families facing terminal illness preserve precious keepsakes for their loved ones.
Main symptoms of lung cancer
NHS
Common symptoms of lung cancer may include:
- a cough that is not going away
- shortness of breath
- coughing up blood
- chest or shoulder pain
- often having chest infections, or having a chest infection that is not getting better
- losing weight without trying
- not feeling hungry (loss of appetite)
- feeling tired all the time
She has since donated boxes to Sue Ryder Leckhampton Court Hospice and is using her family’s experience to help other parents create lasting memories and support their children through grief.
Anita said the boxes can include photos, letters, drawings, a jar of notes with memories written on them, objects which have meaning, a USB stick with videos or recordings, or hand and finger prints.
“It’s just a way to capture those things that become really important once someone’s died, that you don’t think about until afterwards,” Anita said.
Anita said she has had trauma therapy for post-traumatic stress disorder (PTSD), caused by “watching (Ben) die so horribly at such a young age”, and she said grief “takes a real physical toll on your body”.
She likened it to “wearing a 20-kilo backpack” every day – and while it will always be a part of who she is, she said she “gets stronger and stronger as time goes on”.
“Grief was, and still is, the most difficult thing I’ve ever had to deal with in my life,” she said.
Anita joined a Facebook group called Widowed and Young after Ben’s death, which has given her great comfort, and she has “found some of (her) best friends for life on there”.
She said grief does get “easier” with time, and she would advise others experiencing loss to “take it hour by hour, day by day”.
Along with talking more openly about grief and death, Anita hopes her story encourages other people to seek medical advice if they have any unusual symptoms and to advocate for themselves.
She added: “If you feel something’s not right, please push to get yourself checked.
“And finally, I think I’d say to anyone who’s dealing with someone who’s grieving, be kind.
“It’s hard to get up every day and make yourself do the things with that person missing from your life, it’s hard to keep carrying on all the time and to create a new normal, so please just support them.”
Paul Madden, head of grief and bereavement quality and governance at Sue Ryder, said: “Grief is a deeply personal experience, and no two people will respond to it in the same way.
“Some may throw themselves into keeping busy, while others might find everyday tasks overwhelming, and neither reaction is right or wrong.
“There is no set timeline for grief, nor a ‘correct’ way to navigate it. It can come in waves, often when least expected.”
Sue Ryder is a leading palliative care and bereavement charity. For any support with grief, visit: sueryder.org/grief-support.
