Engineer given terminal leukaemia prognosis organises living funeral to ‘say goodbye’ to loved ones before he dies

A former calibration engineer, who was told just days before Christmas his leukaemia is terminal and he only has months to live, organised his own “living funeral” to give him the “chance to say goodbye” to his friends and loved ones before he dies.

After doctors told him his remaining lifespan will be measured in “weeks to months, rather than months to years”, Rob came up with the idea of having a “living funeral” at Cattle Country Farm Park, in Berkeley, Gloucestershire, to bring his friends and family together.

Rob said the occasion was “better than (he) could have hoped for”, and at one point, he even went down the “death slide” at the park – a slide with a vertical drop – and was met with applause and cheers from a crowd of more than 50 people as he reached the bottom.

“I’ve only been to a few funerals in my life, and they’re all really sad, sombre; (everyone is) dressed in black, heads bowed,” Rob said.

“I knew that, at some point, I’m going to have that funeral, but I also knew that a lot of the people that might attend it, I probably won’t get to see before I actually die.

Rob, who worked for an aerospace manufacturer for more than 15 years, was diagnosed with leukaemia in April 2021 after contracting Covid-19 in February.

“My mind just started racing; I didn’t really absorb what they were telling me,” he said.

“When the phone call finished, I remember I just hunched over the machine I was (working) on and just started crying.

“After about five minutes, one of the guys that I worked with popped his head into the room I was working in, and he said, ‘is everything alright, Rob?’

Rob told his parents later that day, but he did not tell his sister until a few days later, as she was due to give birth “at any moment” and he did not want to “give her any stress”.

While Rob describes himself as typically being “humorous” and “silly”, he said it was difficult to be “light-hearted” in the days that followed.

“They knew I had Covid, and they knew I was struggling, but they didn’t realise the severity of it.

“I guess finding out that your first child has got leukaemia is quite a devastating thing to hear, but because I was trying my best to keep a brave face, they did the same.”

He said he was “very close to dying”, as the blast cells in his blood – abnormal white blood cells – measured 95% at the time.

Rob had multiple rounds of chemotherapy, along with eight sessions of total body radiotherapy, and a stem cell transplant.

He said it took him 80 days to recover from the second round of chemotherapy, and during this time, he picked up some “horrible infections” and was fed through a tube for six weeks.

Doctors also discovered the cancer had spread to his central nervous system and, at this point, Rob’s parents were called in to spend the night with him, as they thought he would not make it.

“So my parents were told, ‘you can come and stay overnight with him until he goes’.”

Incredibly, despite doctors’ fears, Rob survived, and he later stayed in a nearby accommodation block with his parents for around 60 days before going home.

He had to return to hospital regularly for check-ups and almost weekly blood transfusions in the months that followed, but Rob then started to notice lumps had formed on his testicles.

Rob said he was “devastated”, but the news “was not a shock” to him, adding: “I’ve known for the last two years almost.

“I’d come to accept that I was going to die of leukaemia, and that all I went through for the past two years has been prolonging it and buying more time.

Rob explained that one of the main things that helped him get through his “darkest times” was social media.

He also started writing a bucket list of all of the places he wants to visit before he dies – specifically, castles – and he later created a fundraising page to help pay for any travel or accommodation costs.

Rob explained that he has “always been fascinated with history” and “castles had always stood out more than stately homes” during his childhood, so he is planning to visit as many castles as possible before he dies, with Tintagel Castle in Cornwall currently topping the list.

He has already visited Corfe Castle in Dorset, as his friends planned a surprise trip for him on January 7, which he said was “absolutely brilliant”.

The “living funeral” was held a week later on January 14, and Rob said everyone was “laughing” and “having fun”.

He said: “Everyone was really thanking me for putting something on that brought everyone together like that.

“They said, if somebody had tried to book a reunion now, nobody would really bother with it, but because of the sad circumstances, it just brought everyone together that otherwise would never have crossed paths again.”

Visit Rob’s fundraising page here: www.gofundme.com/f/roberts-bucket-list or follow him on Instagram @robs_cancer_journey and @robs_final_dance