I knew, even when I was very little, how lucky I was to have her as my mum. Spending time with her was one of my favourite things: idling the hours away endlessly chatting, doing face masks, going for walks, cooking supper, or: ‘Darling – 2nd floor at Liberty’s? Let’s have some tea and the sales are on; I want to get you something lovely.’
Mum had a unique capacity for love – she was just passionate about strangers. It was how she transformed the world around her. It didn’t matter to her who you were, she saw a magic in people that they often didn’t know existed in themselves. And you just need to take what you know of her as a public servant and times that by infinity to understand how she loved her family: no matter how much she gave to so many others, she saved her best for us. Whatever the pressures of her job, she would always answer her phone, even if she did occasionally say in a hushed voice: ‘Sweetheart, I’m in Cabinet, is everything OK?’
The love between us came into soaring technicolour when my daughter was born. Morning rituals of FaceTime and lengthy conversations about how our night had been, how many times Ottie had fed or not, new expressions that had appeared overnight – all of which were observed by Mum as if she was witnessing for the first time the miracle of life itself.
But at 6.45pm on 24 May 2017, when my daughter was just 10 weeks old, the magic of our ordinary life ruptured forever. Completely out of the blue, Mum had two major seizures and was diagnosed with a grade 4 glioblastoma, the most lethal of all cancers, in the left temporal lobe of her brain. We were told it was terminal and, if we were lucky, we had just over a year. Even for a family of staunch optimists like my own, we were cast off into a landscape that felt impossibly dark and utterly hopeless.
It’s difficult to explain to anyone who hasn’t experienced the trauma of an event like this what it feels like, because it is less of a feeling, more like a physical assault on your body. For months I felt like I had electricity coursing through my veins, a searing combination of panic, heartbreak, shock and anxiety. However, what we didn’t know at this point was that we were already at the lucky end of an awful spectrum.
As the news of Mum’s diagnosis became known to friends and colleagues, we quickly found ourselves under the guidance of some of the leading global experts in neuro-oncology and medical innovation. That crushingly low ceiling of treatment options was removed and, in the coming months, a galaxy of other options at the front lines of innovation was revealed: genomic data was sequenced, and everything from nurtraceuticals to repurposed medications to off-label cancer drugs could be recommended.
Of course, the NHS operates – as it has to do – within narrow financial limits and a strict ethical framework, so it was clear that we were going to have to fight tooth and nail to access these other treatment options ourselves. For the past year, this became my life. A full-time occupation, officially termed ‘patient advocate’ – it is actually a work of love, generated by sheer desperation to do anything possible to save the person you love beyond description. But we were the lucky ones...
The only time I saw Mum cry was after one of her radiotherapy appointments. She had observed the waiting room of people, and processed the brutal realisation that the fate of each person in that room had already been written by virtue of their privilege, or lack of it. In her words, this is ‘the most despicable example of inequality’.
Our mission was written in this moment, and in the last four months of her life, she instigated a call to arms to radically rethink the way that we approach research, trials and patient access. How can we improve patient experience, so as to close the huge cancer inequalities that exist both in the UK and around the world? Mum’s campaign for more innovative cancer treatments to be made available through the NHS has instigated a movement that will change the future for cancer patients. ACT for Cancer has been created to deliver Mum’s legacy. Her speech in the House of Lords earlier this year saw the first-ever standing ovation in its history. As she said, ‘What gives life meaning is not only how it is lived, but how it draws to a close.
We have already seen incredible progress in our campaign, with the Government pledging an additional £65m to research, and next year will see the launch of the first-ever national adaptive treatment trial for brain cancer, funded by the Brain Tumour Charity, at Birmingham University Hospital, called the Tessa Jowell Brain Matrix. Even in her death, Mum is a giant of leadership – she is with us on this mission, guiding us all the way.
But no legacy is greater than that of mothering. Mum is in every molecule of the way I love my daughter and that continuum is as close to immortality as we get. Reconciling her physical absence is just impossibly painful. It has created a searing longing that I have not yet learned how to navigate. I have regular bouts of missing her so much that the earth in this strange new world suddenly disappears from underneath me. But just as I start to fall, like magic, she is there again. Igniting the resilience that she spent her lifetime embedding into my core