July 28 2014 Latest news:
Lauren Everitt, Health correspondent
Wednesday, June 25, 2014
Andy Priest has a life that might sound enviable to other fathers. He manages to spend more time with his six-year-old daughter than other dads could dream of. But the truth is that he is terminally-ill and is making the most of the time he has left with his loved ones.
Andy Priest was told the devastating news that he was terminally-ill in January 2012.
The diagnosis came after he had previously defied all odds to overcome leukaemia with wife, Annette, initially told her husband had just two hours to live as he was in multi-organ failure.
The 45-year-old was diagnosed with acute lymphoblastic leukaemia in February 2010 after suffering around four months of excruciating pain.
Initial blood tests came back clear and a neurologist could find nothing wrong.
“On one occasion Andy said it felt like his legs were breaking and he couldn’t cope,” Annette, 46, recalls. “I had to call an ambulance and he was given morphine but it didn’t even touch the pain.
“He got sent home from hospital because the doctors couldn’t find anything wrong.
“He had lost one-and-a-half stone and his stomach swelled. He had all the classic symptoms of cancer.
“During that last week before his diagnosis he said he felt like he was dying and he really did look like he was dying in front of my eyes.”
Andy was rushed to hospital where Annette was told her husband was in multi-organ failure and had just two hours to live.
But he astounded doctors by surviving those critical hours and was then diagnosed with leukaemia which had affected his lungs, liver, kidneys and heart. The diagnosis brought a survival rate of just 20%.
What followed was a course of aggressive chemotherapy and whole body radiotherapy before a bone marrow transplant from Andy’s brother, Jason, in August 2010.
Annette, who lives in Wickham Market with Andy and six-year-old daughter Isobel, says: “Andy was a bodybuilder and was incredibly fit, thank goodness, and was about 15 stone and we think that’s what saved him.
“He lost all his hair and had a bone marrow transplant which left him in solitary confinement for weeks.”
The gruelling treatment caused side effects including diabetes, cataracts, kidney and liver damage while the bone marrow transplant left him open to infections.
Despite being in “tentative” remission for nearly four years, the leukaemia treatment also left him with terminal lung damage due to a bacterial infection, pseudomonas.
“So he was given two hours to live, then a 20% survival rate and had several scary moments,” Annette explains. “You get through leukaemia and think there’s light at the end of the tunnel and then that diagnosis came.
“The only thing that will save him is a double lung transplant but he can’t have that until he’s been cancer-free for five years.”
Andy, who also has sons Declan, 23, Jordan, 21, and Liam, 17, adds: “But I won’t last that long.
“I haven’t gone yet but I’m still fighting. It’s attacking me now and I can feel the disease getting worse each day.
“I know time is running out for me.”
The couple say they are dealing with the terminal prognosis the “best way they can”.
“You can sit there and wallow in self-pity thinking ‘poor us’ or you can get off your backside and live every moment you can,” Andy, who is in constant pain and has six nebulisers and nearly 30 tablets every day, says. “We have a six-year-old and have to keep things normal for her and my three sons.”
Annette adds: “We’ve had four years of living and a lot of it has been at hospital, taking medication, but equally Andy was forced to give up his hydraulics and engineering company as soon as he was diagnosed so he has spent a lot of time with Isobel that most working dads wouldn’t be able to do.
“We look at the positives and get through it with humour.”
Their positivity is one of the reasons the couple, who have been together for nearly 19 years, took part in Channel 4’s frank documentary My Last Summer, which tackles taboos around death with five people who are terminally-ill facing their last months together.
“I know the disease is going to kill me, but I don’t know how long I’ve got left,” Andy says. “I’m making the most of the time I’ve got.
“I wanted to put my message across that when you have a terminal illness, it doesn’t mean you have to go home and die.
“You can think ‘right, I need to change my life so I can still enjoy the time I have and not think about dying’.
“Too many people do that and you need to talk about it because it’s a taboo subject.”
Andy’s biggest fear is leaving Annette, Isobel, a pupil at Grundisburgh Primary School, and his sons behind.
“In some ways at least we’re able to prepare for me dying,” he explains. “I’ve been writing birthday cards for Isobel until she is 21.
“They have different messages and one says: ‘You have grown into a beautiful little girl and I’m so proud of you’.
“The hardest one is her wedding day card – I can’t even think about that at the minute.”
The couple say they did not keep the diagnosis from the boys but delayed telling Isobel.
Annette explains: “We had a party which was a celebration of Andy’s life with family and friends in Oxford.
“We knew there would be quite a lot of tears and emotion at the party so we had to tell Isobel.
“She said ‘I know, it’s okay, nanny told me. She said she will be coming to get you in a little while’.”
One of the other side-effects of Andy’s diagnosis was the financial implications.
Annette says: “We had to sell our home in Oxford and move somewhere cheaper which is why we moved to Wickham Market.
“We had bailiffs knocking, asked family for money and got lodgers in to help make ends meet.
“We lived in Grundisburgh for a year and then Andy’s life insurance paid out which bought our current home.”
Andy adds: “I wanted to ensure the girls had somewhere to live.” Andy has spent several days at St Elizabeth Hospice in Foxhall Road, Ipswich, where he has discovered a talent for song-writing.
“Going to a hospice has given Andy a new lease of life. It has given him a purpose with his song-writing and making a CD,” Annette explains. When the time comes Andy has decided he wants end-of-life care from St Elizabeth Hospice at home, with Annette by his side.
While on camera for My Last Summer, Andy refused to cry but broke down when Annette bought him a Harley Softail Heritage Classic motorbike – something he had always wanted.
“We agreed to buy it as an investment that could be sold to pay for Andy’s funeral,” Annette says.
Andy adds: “I always wanted a Harley and was going to get one for my 50th birthday but obviously I won’t be here then.
“When I am on my bike that is the only time I switch off from everything; I forget I am ill. It makes me so happy.”