A father-of-three who joked about being the “fittest guy” he knows has been told his cancer diagnosis is now stage 4 and terminal.
William White, 61, from West Lothian, Scotland, was first diagnosed with colon cancer in February 2020 after noticing weight loss and blood in his stools.
The former software developer who lives with his 58-year-old wife Ellie and has three children, Ross, 38, Cheryl, 36, and Hayley, 29, underwent surgery and chemotherapy, but relapsed.
Then a routine scan in August 2023 delivered the devastating news: his colon cancer had progressed to stage 4 and was deemed terminal, with an average prognosis of two and a half years.
During treatment, William reignited his childhood passion for Lego and now has nearly 70 sets, including Formula One cars, flowers and even a castle, which he is building with his wife.
His love for Lego has helped him plan his own funeral, which will feature a Lego-themed coffin and order of service, and he wants to encourage others to “live their life as if it’s their last day”.
“Christmas 2019, I’m talking about being the fittest guy, the fittest 55-year-old I know – and within weeks, I’m diagnosed with colon cancer and my world has been turned upside down,” William said.
“Now, my mission is raising awareness about stage 4, that you can still go out and do special things when you have cancer, you can still make memories.
“My time is limited, and I am going to make absolutely the most of what I’ve got.
“I tell everybody just to live their life as if it’s their last day.”
Speaking about the motto he lives by, he added: “Go big or go home.”
Before his initial diagnosis, William was “fairly fit and active” and a keen cyclist, riding around 200 miles per month.
However, in December 2019, he started losing weight and noticed blood in his stools.
After seeing his GP, he was sent for a colonoscopy – a test to check inside the bowels – and he was diagnosed with colon cancer in February 2020.
“I had surgery to remove part of my colon, I had chemo, and everything was OK for a couple of years,” he explained.
“I went for a routine scan in 2022 and found out my cancer had returned.”
When William relapsed, he learned the cancer had spread to his pelvis and he underwent further surgery to remove the cancerous tissue, along with more chemotherapy.
He said chemotherapy has left him with nerve damage, called peripheral neuropathy, which means he has numbness in the soles of his feet, but he has otherwise “tolerated (the treatment) reasonably well”.
However, after going to hospital for the results of a routine scan in August 2023, William was told his colon cancer was stage 4.
“I saw my oncologist, she sat me down, and she basically said the cancer had returned and it was inoperable and incurable,” he said.
“If I’m being honest, that’s all I heard that day.
“It will sound like the most ridiculous thing on the planet, but my wife and I had been to the cinema the previous night and saw the Mission: Impossible film, which ended up being in two parts.
“And the first thing that came into my mind when I got told I was stage 4 was I might not see the second part of the film.
“I didn’t think about how I was going to tell my children or my dad or my sister or my grandchildren. The mind works in a strange way.”
William learned the cancer had spread from his colon to his peritoneum – a membrane lining the abdominal cavity – and the average prognosis was two and a half years.
He said the NHS had been “absolutely wonderful”, but at this point, he was advised to make the most of his private healthcare through his work as it would “give (him) more options”.
He is now having regular check-ups and undergoing a new type of chemotherapy and taking tablets, and he has “good weeks and bad weeks”.
He experiences stomach cramps, pain and other bowel issues, but he “makes the most of the good days”.
“My wife is taking six months off work so we can spend more time together because, obviously, you don’t want any regrets,” William said.
“So if we have a good day, then we’ll go out and do something, like going out for lunch or for a drive.”
Just after his stage 4 diagnosis, William started something called Will I Am’s Making Memories Tour.
He said he has featured in a short film, seen Kylie Minogue perform live twice, been on several holidays and, as a Formula One fan, visited the Red Bull factory on a tour.
“I never thought I’d get another holiday when I found out I was terminal,” he said.
“The tour is about making the most of your life and doing as many different things as I possibly can with the time I’ve got left.”
Having loved Lego as a child, William’s passion for it was reignited while going through treatment, particularly during the Covid-19 lockdowns, as he was unable to leave the house.
What started with one Lego car has turned into a collection of nearly 70 sets, including Formula One cars and flowers, which he displays in bookcases and on shelves and windowsills around his home.
“Lego just became a go-to and then people started buying it for me and it became out of hand,” he said.
“I ended up milking two birthday parties for my 60th… but they were both Lego-themed, with Lego bunting, a Lego cake and a Lego figure of me, and that’s how it started.”
At his wife’s suggestion, William also started planning his funeral to ensure his final wishes are fulfilled and to alleviate any stress for his family.
Along with a Lego-themed coffin and order of service, and a Lego keepsake, William has written his own eulogy and planned his music, including Never Forget by Take That, which is his “daddy-daughter song” with his eldest daughter, Cheryl.
“The day is supposed to be about remembering the person, so I thought, ‘I’m all in on this one’,” William said.
“It’s an incredibly sad day, but I just wanted to do my story my way.”
William, a grandfather of three, said his family and friends have helped him through his diagnoses and treatments, but it has been “tough” for his loved ones.
He said Marie Curie Hospice, Edinburgh, where he joined the music group, has been hugely supportive, and he has a “network of people” who are always there to help and talk to him.
William is encouraging people with unusual symptoms to get checked and not to wait until retirement “to do the things you want to do”.
Speaking about his love for Lego, he said: “It started off as a joke, but it’s ended up being something very personal to me, because it’s all part of my cancer journey.
“That’s where the love came and it’s snowballed out of control – and I suppose my argument to my wife is, what I used to spend on bikes, I spend on Lego.
“With the Lego and Making Memories Tour, it’s not a case of, it’s the end, it’s a case of, you have a real opportunity to do something special and make memories with the people who are really important.”
For more information and support, visit Marie Curie’s website.
