Last act
Filming Tessa Jowell’s final weeks
Baroness Tessa Jowell broke the nation’s heart in January when she stood in front of the House of Lords and delivered an impassioned speech, drawing on her own year-long battle with brain cancer to plead for innovative changes that could improve the lives of others.
“What would every cancer patient want? To know that the latest science is being used and available to them,” the former culture secretary told the chamber. “In the end what gives a life meaning is not only how it is lived, but how it draws to a close.”
Peers, moved to tears, gave her an unprecedented minute-long standing ovation.
After watching her speak, I felt compelled to find out more about her campaign and approached Tessa to ask if she would participate in a film. She was eager to get involved, in the hope that her voice would help other sufferers. This is how I came to have the privilege of spending Tessa’s final weeks with her and her family, witnessing some of their last, intimate moments together for a special BBC Panorama episode, which airs on Monday. The film shows the harsh reality of brain cancer, explores the trials that are under way and asks what more the UK could be doing for patients with a terminal diagnosis. But it is about much more than that: it shows how human determination, altruism and, above all, love can persist in the face of fatal adversity.
Tessa announced she was being treated for brain cancer last September, on her 70th birthday. Four months earlier, she had been diagnosed with glioblastoma multiforme, or GMB, an aggressively malignant tumour for which there is currently no available cure. In the UK, which has one of the lowest survival rates in western Europe, three in four people diagnosed with her type of tumour are dead within a year.
In the last year of her life, Tessa and her daughter, Jess Mills, 37, divided their days between treatment, quality family time and lobbying for change. One of the only times throughout the ordeal that Jess saw her mum cry, she told me, was in a hospital waiting room, when Tessa realised those around her without money were likely to die sooner. She was devastated at the despicable inequality. It was this passion for other people in the face of her own terminal struggle that I wanted to convey in the film.
Tessa’s final campaign was to bring investment to brain cancer research and open trials up to more NHS patients. We have had no major breakthroughs in the treatment of her type of cancer in 50 years, or improvement in mortality rates for 30 years. New treatments that do exist are not available to most British citizens, because the NHS can’t afford them.
One treatment Tessa trialled was a £240,000-per-year skullcap that fires electrical pulses into the brain to target the tumour. Another patient I filmed, Jack Sanders, 36, who has the same cancer as Tessa, had to raise thousands of pounds for an immunotherapy treatment in Germany that isn’t available in the UK.
But not every patient is as lucky as Tessa and Jack. Only four per cent of brain cancer patients make it on to clinical trials in the UK, meaning that once NHS treatment (limited to surgery, chemotherapy and radiotherapy) runs its course, there is nothing more that can be done if they can’t pay privately.
Although her speech had started to deteriorate and she needed to take regular naps, Tessa was unfailingly warm, bubbly and welcoming. During our time together, the house was always busy with Jess cooking, her baby daughter Ottie – Tessa’s first grandchild – being passed around, and friends and family members popping in. We filmed with her for a couple of hours a day. There were times when Tessa was too tired and we’d turn the cameras off, but, if she was suffering, she never showed it. She always had a smile and wouldn’t stop offering us tea and snacks – to the point we had to say: “Really, we’re fine, pretend we’re not here.”
One poignant moment I was lucky to witness was Tessa’s final appearance at the Houses of Parliament on April 19, when she returned to attend a Commons debate on cancer treatment, after which her colleagues honoured her with a reception. There was a sense among those who came to see her – Jeremy Hunt mingling with Ed Miliband and Yvette Cooper – that they may be doing so for the last time.
“Tessa, when you faced the biggest challenge of your life, getting a tumour, you didn’t have to tell us to rip up Government policy on brain cancer and tell us to start again, but you did,” Jeremy Hunt said, in his speech. “We’re so proud of the legacy you’re going to leave.”
Tessa’s responded: “I hope I’ll go on doing this always. I have had so much love, so much care, so much attention. I want other people to have the same.”
We never discussed Tessa’s death. The family – including her husband David, who stayed in the wings – were so keen to campaign, look for new treatments and meet other patients that they never dwelt on the end. Thinking about the future kept them busy – and happy. They knew Tessa had a terminal diagnosis, but apart from her appearance, you wouldn’t have known there was a cloud hanging over the home. Every moment was spent laughing and cooing at Ottie.
When we started filming, I truly believed she would live to watch the programme when it aired. It was sometimes difficult for her to find the right words, but she was still lively and wore the electrical skullcap and a warm smile as she bustled around. There was no sign that her life was about to come to an end. But on May 12 2018, a week after we finished filming, I woke up to a message saying she had sadly died.
Tessa’s family are incredibly brave and I hope the film, which means a lot to them, will further her fight to bring about a radical and permanent change in NHS cancer treatment. A sea change is under way, but there is so much more to do.
Jess clearly needs to heal, but she’s proud of her mum and, while it’s impossibly sad, knows she also has a lot to celebrate. In the days after Tessa’s death, the Government said it would double its investment into research for tackling brain cancer to £40million in a fund named in her honour.
It has also committed to looking at the trials available on the NHS and how they could be improved. And the Universal Cancer Data Bank, a global project to collect and share patient data, for which Tessa became the first signatory, has launched its mission in the US and is about to start its first trial with around 1,000 patients later this year. Separately this week, there was also news that researchers at King’s College London had “remarkably promising” results in preliminary research into a vaccine that could double the life expectancy for people with GMB.
If there is one thing I will take away from this project, it will be to always live in the present – and never take a moment for granted. When challenges come my way, I now think, “if Tessa can do it, I really can”.
For anyone who watches, I hope they will see a woman who never stopped fighting: Tessa had the power to bring together those from competing parties and backgrounds to work on challenging projects, from the London Olympics to brain cancer. Her legacy is already improving the lives of people all around the world.