Adam Blains three children know he has terminal cancer. In fact, theyre so familiar with the reality of his illness, its become boring background noise, he says. Long may it stay that way.
Once a lawyer with a top London firm, Blain has always been straight talking, and he makes no exception when it comes to speaking publicly about his brain tumour.
For me theres no other option I dont want to dress it up, he says.
If nothing else, my children cant complain that its a shock when Im on my deathbed.
At 44 years old, Blain was diagnosed with glioblastoma multiforme, an aggressive form of cancer, and underwent major surgery to have a pear-shaped tumour removed from his brain days later in May 2014.
The median life expectancy after such a procedure is just 18 months, but more than seven years since diagnosis, Blain is still here, still telling jokes and writing his third book in a series of darkly comic memoirs about the experience.
He is ideally placed, therefore, as one of several non-experts to feature in a public exhibition opening at the Francis Crick research institute in London this month.
Outwitting Cancer: Making Sense of Natures Enigma will be an immersive exhibition exploring the latest cancer research taking place at the Crick, an impressive open-plan space designed with cross-collaboration and creativity in mind.
Helping to bring some of that research to life are a series of short films, each one capturing a meeting between a researcher and non-expert or layperson.
]Their candid interactions help to illustrate the underlying theme behind the exhibition: that cancer should be an open discussion, with no question off limits.
Meeting with Simon Boulton, senior group leader at the institute, Blain asks: Why do you use worms in your research? Its not a silly question: some scientists use mice, others use fruit flies. What on earth do worms have in common with humans?
The answer, Boulton explains, is that worms go through their life cycle very quickly from a single cell to fully-grown adult in 36 hours which allows researchers to see genetic changes taking place in rapid time.
In another short film, the broadcaster Alix Fox interviews Karen Vousden, Cancer Research UKs (CRUK) chief scientist, and senior group leader at the Crick, to unpick questions including: Is cancer contagious? And Why dont elephants get cancer veryoften?
If the exhibition leaves visitors with one message, Vousden tells i, its that cancer is no longer the taboo subject it once was.
Were taking a tricky topic, one that people tend to shy away from, and opening it up to allow them to understand more about what cancer is and what it means. Were hoping that people will see it as serious but also hopeful and positive, she says.
When we consider that one in two of us will get cancer at some point in our lifetime, its surprising how little most us know about the disease, and how little most of us want to talk about it.
Recent warnings from CRUK about the backlog for treatment caused by Covid-19 have no doubt added to the fear around cancer diagnosis: in June 2021 the number of patients waiting six weeks or more for tests was six to eight times higher than in 2019.
For experts like Vousden, these stark figures present another reason why we should all be talking about cancer much more openly.
Understanding is such an important part of managing and approaching cancer, she says.
We know that people are often reluctant to come forward to their GPs with a problem, and much of the time thats because they dont understand whats happening to them and theyre scared.
Cancer is complicated, much more difficult than rocket science, Vousden jokes, but its her hope that the films demonstrate how you can have a conversation with scientists. Were not these alien beings, were human and we want to share whats interesting and the good things that are happening.
And there are plenty of things for visitors to the exhibit to feel positive about.
Another non-expert who features is the BBC journalist and news presenter George Alagiah, who is living with bowel cancer.
He meets Vivian Li, stem cell and cancer scientist, to learn about her work creating organoids, or mini organs, from mice as a shortcut to studying how cancer progresses in the human body.
These organoids are opening up new possibilities for personalised treatments for cancer patients the idea being that a particular drug could be run through a sample of the patients own DNA cells in the lab to see how effective the treatment will be.
This will help consultants to prescribe more targeted treatments tailored to each patient and reduce the risk of side effects.
Meanwhile, new genetic sequencing technologies are unravelling some long-standing mysteries about the evolution of tumours for instance, how and why they spread more quickly in some patients than others.
Because of these studies, we can actually monitor evolution of cancer cells occurring and find evidence of the cancer coming back in blood samples before its present on a CT scan, says Charles Swanton, a research group leader at the Crick and chief clinician for CRUK.
There are other reasons, too, why experts are keen to generate more interest in cancer research among the public. Cancer charities, which fund a lot of the research taking place at institutions such as the Crick, have suffered as a result of Covid restrictions.
Much of the income received by CRUK, for example, comes from its high street stores, which were forced to close, and mass fundraising events like Race for Life, which were cancelled or postponed.
This all means we will ultimately be able to fund less science, Vousden warns.
Brain tumours like Blains are one area of research that is already disproportionately underfunded, something he is vocal about, taking the opportunity to raise awareness through his books and public appearances but all in good humour.
Blains first book, Pear Shaped, even received glowing reviews from the likes of the former US senator John McCain, whose wife Cindy described it as much needed medicine throughlaughter.
There is no situation where humour cannot be dug out, even brain cancer, says Blain.
We want as many clever people doing as many interesting innovative things as possible, and so to make people laugh, relax about it anything that can start the dialogue and get people interested is going to be a good thing.
Outwitting Cancer: Making Sense of Natures Enigma is a free exhibition running from this Saturday to 15 July 2022 (Wednesdays to Saturdays) at the Francis Crick Institute in London
More here:
My children know I have a terminal illness talking openly about cancer benefits all of us - iNews
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