He was a former calibration engineer and was informed a few days prior to Christmas His leukemia is fatal and he is given months to liveHe set up his “live funeral” in order to be able to say goodbye to his loved ones and friends before he died.
Rob Hill, 33, resides in Thornbury. South GloucestershireHe said he had known for nearly two years that he was going to die of leukemia—a cancer of the white blood cells—but he did You do not receive a final prognosis It was “devastating” until December 2022
After being told by doctors that his remaining life would be measured in “weeks to months, rather than months to years”, Rob came up with the idea of having a “live funeral” at Cattle Country Farm Park, in BerkeleyAnd Gloucestershireto bring his family and friends together.
The event featured a buffet and games for the children, as well as a photo table where people could share fond memories of their time with Rob.
Rob said the occasion was “better than (he) could have hoped” and, on one occasion, he even went down the park’s “death slide”—a vertical-drop slide—and was met with applause and cheers from a crowd of more than 50 when he reached the bottom.
“I’ve been to quite a few funerals in my life, and they’re all very sad, somber; (everyone) is dressed in black, with their heads bowed,” said Rob.
“I knew that at some point, I would have that funeral, but I also knew that a lot of the people who would attend it, I probably wouldn’t get to see before I was actually dead.
“I wanted something where I could see them all, and could talk to them, catch-up with them, (and) have an actual opportunity to say goodbye.”
Rob, who had been in the aviation industry for over 15 years, was diagnosed in April 2021 with leukemia. He had contracted Covid-19 in February and had worked in the industry since February.
Rob believed that his symptoms of night sweats, extreme fatigue, and fever were due to prolonged Covid. But it wasn’t until he received an email from Bristol Royal Infirmary 23 April that he realized he was actually at work. Myeloid Leukemia.
“My mind was just starting to race; I didn’t really get what they were telling me.”
“When the phone call ended, I remember I just leaned over the device I was (working on) and just started crying.
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“About 5 minutes later, one my coworkers shot into the room I was in and asked, “Is everything okay Rob?” “
“I don’t know how I said it because it’s hard to say now but I just said, ‘No, I was just informed I had leukemia.’”
Rob informed his parents later that night, but didn’t tell his sister until a few weeks later, as his sister was due to give birth “any moment” and he didn’t want to “cause any stress” for her.
Rob describes himself as “funny” or “silly” but he admitted that it was difficult to be “light-hearted” during the next days.
There were many tears, but it was the last thing they had hoped for.
“They knew I had Covid, and they knew I had, but they didn’t realize how serious it was.
“It is disappointing to learn that your first child has leukemia. But, I tried my best to be positive and kept my face sour, and they did the exact same.”
Rob was admitted at Bristol Royal Infirmary approximately 10 days after being diagnosed.
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He was “near death,” he said, as the blast cells in his blood — abnormal white blood cells — were at 95% at the time.
He was kept in hospital for the next four-months. He had to undergo blood tests, scans, ECGs, and electrocardiograms. A peripherally inserted central catheter (known as a PICCline) was fitted. This allowed doctors access the large central veins. His heart.
Rob has had several rounds of chemotherapy. He also received eight sessions total body radiotherapy and a stem-cell transplant.
Rob stated that the first round, with no side effects, was easy. But the second round was more difficult. He remembers one particular day where he was scratching at his face when the beard hairs from his hands fell out.
He said it took him 80-days to recover from the second round. He also mentioned that he developed “horrible infection” during this period and was fed via a tube for six more weeks.
Rob’s parents were also informed by doctors that his cancer had spread to his central nervous systems. They decided to spend the night with Rob, as they believed he wouldn’t make it.
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He said, “They all thought that it had spread my brain and that I had only two days to live.”
“So my dad was told that ‘You can come to him and stay with them until he’s gone.
Amazingly, Rob survived, despite doctors’ concerns. He later stayed in an apartment building near his parents for approximately 60 days before returning to home.
In the months that followed, he had to return to the hospital almost every week for blood transfusions and checkups. But then Rob noticed lumps developing on his testicles.
Rob received an ultrasound on December 16th, which showed that the cancer had returned. His leukemia had spread to his blood.
Rob stated that he was “devastated”, but that the news was “not surprising to him”. He also said that they had been friends for about two years.
“I used to accept that I was going to die from leukemia, and that all I had been through the past two years was prolonging it and buying more time.
“I was supposed to die in May 2021, but the fact that I’m still here, makes it worth it that I went through everything to get that extra time.”
Rob said that social media was the main thing that helped him get through his “darkest time”.
While in the hospital, he set up an Instagram account to keep track of his progress and to help “other people around world” with leukemia. It now has over 1000 followers.
He also began to write a list about all the places he would like to visit before his death – specifically castles – and later, he created an online fundraising page to help pay for travel or lodging.
Rob explained that he is fascinated by history and that castles were more than just stately homes during his childhood. He plans to visit as many castles before he dies. Tangail CastleCornwall is currently at the top of the list.
He has already visited Corfe Castle DorsetHis friends planned a surprise vacation for him on January 7, which was “absolutely unbelievable.”
Rob said that his friends were dressed in jockey costumes and it was an amazing experience to see them participate in something that meant so many to him.
Rob said that everyone was laughing and having fun at the “Live Funeral” one week later, on January 14.
Rob now “takes every day as it comes” but is grateful for the love, support, and encouragement he received that day.
He said: “Everyone was really thankful to me for putting something together that brings everyone together like this.
“If someone tried to book a reunion now, they said, no one would really care, but given the sad circumstances I got everyone together, they would never have met 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
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