This piece by Sonia Khan is a powerful reflection on the need for awareness and funding to help the thousands of families who each year have to face the hidden struggles which come with a brain tumour diagnosis. It was first published today in The Times - www.thetimes.co.uk/article/brain-tumour-sufferers-are-being-left-on-the-scrapheap-pfg8dt9vv
We’re very grateful to Sonia for supporting our work and sharing her words with us.
When I heard that the actor Paul Ritter had died of a brain tumour, my heart sank. While I’ve never suffered from one, my husband has had three in the least nine years and I can imagine the pain Paul’s family is going through.
The news came as a shock as most people didn’t know that Paul had a brain tumour and I’ve found, having got to know this community over the years, that most people don’t tell others. They carry on as if life is normal and while they look fine, they’re often hiding the fact they may be carrying a golf ball-sized tumour in their brain.
For this, brain tumour sufferers can face great discrimination.
From going to A&E with debilitating headaches and not knowing if the growth in their head is going to kill them now or in days while others tut “you look fine”. From using disabled loos with a carer as many of their fine motor neuron skills have been decimated from surgery and bouts of radiotherapy only to be yelled at for not “looking disabled”, to being told “you’ve got fat” as the dexamethasone – now a key COVID-19 drug – has left them with a lot of swelling/water retention.
They suffer in silence to avoid attracting attention, but attention is exactly what this cause needs to attract the funding it deserves.
I contemplated for a long time whether I should write this article. As someone who has been a carer and seen first-hand the awful impact of brain tumours on those who survive, I feel that I must be an advocate for better funding.
It shouldn’t be the case that those who shout the loudest get the most amount of money. Or that change only happens when those in high power and with influence can get the change they want and seek, something exposed in previous weeks.
I’m not a former prime minister nor was I special adviser when I was first exposed to brain tumours. I was 19 when my now husband experienced his first tumour – long before I entered national politics – and I know how helpless it feels to watch a loved one be wheeled in to surgery after being told of all the risks.
I can understand why some people have taken their families abroad to get the treatment they need while facing the risk of imprisonment. I can understand why some re-mortgage their homes to get their family treatment in countries with more advanced technology.
I understand but it’s not right and they shouldn’t feel the need to take this action.
Covid-19 has shone a light on the incredible things this country can achieve especially when the right funding is in place. The speed of developing a vaccine was like no other but we saw the consequences of the laser-light focus on the pandemic — many people couldn’t see doctors and there were delays in cancer diagnosis and treatment.
We shouldn’t further exacerbate the pain by underfunding research into key cancers and we should ensure that funding reflects the delays posed by Covid-19 so those waiting aren’t left on the scrapheap.
For all the talk of investment into big projects, buildings, transport and more, it doesn’t matter if we don’t make the ultimate investment — the investment in people. It is people who will keep the country going — from teaching the next generation and developing lifesaving products.
We can’t let Covid-19 stop this progress nor can we move forward as a progressive society if we’ve saved the nation’s people from one disease only to then lose them to another.