Humour after a tumour
LIKE MOST Jewish parents with a son approaching his 13th birthday, Adam Blain and Lucinda Melcher are anticipating their middle child Sacha’s barmitzvah, which will take place in October. “We’re hoping to have a party, but we’ll have to see how it goes,” says Lucinda. “We’ll do something, whatever happens.”
Her reticence is understandable. They have no idea if Adam will be well enough to celebrate with his son by then, or even if he’ll still be here. He isn’t supposed to be. In May 2014, he was diagnosed with a terminal brain tumour and told he had just a year to live. Three years on, he is acutely aware he is living on borrowed time.
The couple, both 47, met through a Jewish dining club 22 years ago, and married at Brighton and Hove Reform Synagogue. They have three children, Jonah, now 14, Sacha, 12, and Thea, seven, and belong to the New North London synagogue.
Adam was working hard as a successful corporate lawyer when he began to have headaches. At first, his GP said they were tension headaches but they became more severe and more frequent until, one morning, Lucinda — an oncologist — decided she should take her husband to A&E at North Middlesex Hospital, where she is a consultant. “I just thought enough was enough and he should have a scan to rule things out,” she recalls. “I didn’t suspect anything sinister.”
Leaving Adam at A&E, she went to take her clinic. Some time later, in between patients, she phoned him. “He said he still hadn’t got the results, and he needed to get back to work, so I just thought I’d look them up on the system for him, to speed things up.”
What Lucinda saw on the screen in front of her made her blood run cold.
“I knew immediately what it was,” she says. “I could see that it was a malignant brain tumour — a glioblastoma — and I knew from my training what that meant. Glioblastomas are the most aggressive form of adult brain tumour and the prognosis is very poor. There are no long-term survivors.
“It was absolutely awful — in a split second our lives had been devastated. I had to abandon my clinic, get a colleague to take over and then go to tell my husband what was wrong. Apparently, I phoned his parents as well, but I don’t remember doing that.” Adam says there was no comfort in hearing the diagnosis from his wife, rather than a stranger. “It really isn’t about who breaks the news. Lu didn’t mess around; she said it like it was. I was in total and utter shock, I felt bewildered and exasperated.
“I’m very logical, a realist. I deal in facts and it’s quite hard to be optimistic in my position. So I went into practical mode. My whole focus was on making sure Lu and the kids were OK financially. What else is there? That’s all you can do.”
Within days, Adam had surgery to remove the tumour and the right temporal lobe of his brain. Afterwards, he had radiotherapy and chemotherapy. “They managed to get all they could see of the tumour out,” says Lucinda. “But this type of tumour has little tendrils that spread through the brain cells, so you can never entirely remove it all.”
They decided to bring forward Jonah’s barmitzvah, from July to March 2015, changing the location to lunch at their home, so that Adam could rest if necessary. “It was lovely, and our son understood,” says Lucinda. “But it was difficult for him. It’s been horrible for all the children, and they’ve all coped in different ways. At the moment, they’re OK because Adam is OK-ish, but it’s early days. Things will get worse. You can’t be strong 100 per cent of the time.”
Adam says they have been honest with their children. “We don’t want them to have resentment later in life that they didn’t know the full story. Our sons are very good with maths, so they know all the stats. And the stats are dire.
Our youngest is too young to get it. She thinks it’s all to do with how my head looks, so when I came back from hospital with a big bandage on it, that was bad, but now I don’t have a bandage, I’m better. That’s really hard.”
A recent scan showed that, while his cancer is currently stable, his radiotherapy has caused brain damage. “I’ve got severe memory loss, so I’m currently off work and it’s very depressing.”
He has filled his time by spending more time with his children and by writing a book — Pear Shaped: The Funniest Book So Far This Year About Brain Cancer — so-called because his tumour was the size of a pear.
“I’m a bit of an amateur comedian and I just decided to start jotting down my thoughts, and then publish them as a book. My humour is very dark; it’s my two fingers up to cancer, my way of hitting back. I refuse to be completely cowed and owned by the disease. I need to still be me.”
He’s had hundreds of reviews, mostly five-star. “Many are written by victims of the disease and their carers. My book seems to help people, which is great.” He’s writing a sequel and volunteering at a soup kitchen every Sunday.
The whole family has been helping to raise awareness and funds for The Brain Cancer Charity, taking part in a 10k twilight walk, and filming a video about their experience. Sacha has set up a Just Giving page to raise money during his barmitvah year.
“There is a lack of funding and research compared to a lot of other tumours,” says Lucinda. “The prognosis hasn’t improved in the last 10 years.”
They say friends have been amazing and are grateful for wider support. “When we go to shul, everyone is lovely. And our rabbi has came round a few times with challah and fruit.”
They won’t bring Sacha’s barmitzvah forward. “In May, Adam will have survived three years since diagnosis, which is double the median survival. We take each day as it comes now.”
Adam echoes this. “I’ve learnt to live for the day. If something good happens to me I savour it. Lu and I now have a weekly date night, every Thursday without fail, when we go out for dinner, just the two of us. It’s something that we’ve been focused on doing and maintaining, enjoying the time we have. I know l’ll never get an all-clear, and I never forget that I’m living very much on borrowed time.”
Lucinda and Adam with children Thea, Sacha and Jonah. Below; Adam after surgery