Hu­mour af­ter a tu­mour

The Jewish Chronicle - - LIFE - HI­LARY FREE­MAN www.the­brain­tu­mour­char­

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

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