The Right To Hope

Behind the Right to Hope, with Catherine

Can you tell us more about your very poignant video?

The video was something David felt compelled to do, from early in his diagnosis, when we learned more about the persistently low survival rates for certain cancers - not because we were ever inclined to share, but because David felt some principles mattered enough to show. David wanted to give an insight into the human cost, beyond the statistics and beyond words. Not because he ever once felt personally aggrieved by the tragedy we were facing - his strength of character throughout was exceptional. It was because we did not wish to be passive in addressing, for others, what could perhaps have been addressed long ago. The more we learned about the issues, it strongly indicated to us that the single biggest difference would come from government leadership - the political will to address the known impediments to progress, and thereby enable science to move these cancers towards improvement. We would never have presumed to ask governments for anything previously - and we are resolutely apolitical. But leadership did not feel like too great a request - and it felt that David had perhaps earned the right to state it. I am grateful to our (then) MP for echoing that, in David’s name.

David understood it would take me some time after he tragically died to feel able to complete the video, and to show it publicly. It is of course deeply personal, and I could not have done it without kind support. But what would it have said about my courage if I had not been prepared to try to match David’s. We considered ourselves private people - this is not a natural thing for me. But I can’t, and won’t, stand back on brain cancer.

Our experience of cancer together, in what David called ‘our little coalition of 2’, was to humbly acknowledge an incurable diagnosis and, at the same time, to strive for even one more day together, never letting go of what is possible day by day. David wanted to show how that feels. He never once had a moment of ‘why me’ for himself. His grace and strength were incredible. His focus was always on what he could still do - and what he could do to improve outcomes for others, in whatever time we had left.

The central part of the video has many meanings for us. On one level, it was about defying cancer - in whatever way we could - until the illness tragically took over. David’s tumour brought weakness to his left side, affecting his mobility and arm. It was how the tumour suddenly first made itself known. Nature did not permit the strength to return to David’s arm. But David was determined, with nature’s cooperation, to try to reclaim the rest of what cancer had taken. He didn't do it to inspire - it was our way of doing something about the cancer, when so much of what we were hearing was focussed on what couldn't be done, and what wasn't possible. We set a goal to walk through cancer our way, in defiance and for however long nature would permit. And we did, hand-in-hand as was our way. I know what it took for David to do that. I know what every step meant. The leadership I now humbly seek from governments will involve their effort - but nowhere near that personal scale.

All the images of David during his illness, and of us together, were chosen by David. They were taken during a time when we were still able to have one or two outings. David then selected those images specifically for the video. He had taken off his supportive arm sling just before, because he felt it got in the way of us holding hands. He therefore felt those images showed both the physical and emotional impact of cancer on us - he did not wish to shy away from showing either.

The video was not about overcoming disability. We have never believed that the way someone moves through the world defines their worth or their innate self. In the video, David wanted to show himself both before and during cancer - with and without his wheelchair - because he is the same person throughout. We felt very strongly about that. For that reason, and of specific significance to us, it is also a humble and respectful challenge to assumptions that can be made.

‘Don’t believe in impossible’ was our encouraging call - and our heartfelt thank you. To all those who work tirelessly to improve outcomes. And who, like us, never let go of what is possible.

For the challenging moments when David knew I would be taking forward the Right to Hope on my own, he told me to hold close for reassurance the words of Theodore Roosevelt. I feel that the sentiments apply to all the organisations and individuals who have worked with such commitment - undeterred - long before our own cancer experience led us here.

Why ‘the Right’ to Hope?

The first thing we learned about Glioblastoma, the brain cancer David had, was that it is incurable. Treatments and outcomes have barely changed in a generation. A significant reason for this is the - perpetually - low level of national cancer funding for brain cancer, and the impact on vital research.

Brain cancer takes the lives of more children, and adults under 40, than any other cancer. Yet it has historically received just over 1% of national cancer funding. We found that hard to comprehend, and even harder to accept.

David and I had more than six decades of public service between us. We understood resource issues, competing demands, and complex decisions. But I equally could not grasp why any cancer with a perpetually low survival had not triggered a sustained focus and commitment at government level - by the owners of national cancer strategies. As with anything in life, if results barely improve, it deserves proactive focus to understand why, and to bring it to where it needs to be. It should not - knowingly - be perpetually left behind. Yet here we were talking about people’s lives - the life of my husband - and it felt that they were being left behind. That was visceral for me.

We therefore established the Right to Hope.

What are its aims?

To do what it can to break down the barriers to hope for brain cancer and the other cancers with the lowest survival.

It currently does this by:

• seeking sustained leadership from the owners of national cancer strategies to address the barriers which impede improved survival rates
• championing expert organisations and charities who strive for better outcomes
• fundraising, for improved outcomes
• constructively highlighting, directly with stakeholders, some of the challenges we faced from diagnosis

• Separate to our cancer endeavour, David and I wanted to help - in any appropriate way - organisations who support people affected by brain injury.

Why did you decide to extend it beyond brain cancer?

Brain cancer was the tragedy we faced. But everyone facing cancer deserves hope - too many other people also know how it feels to receive a devastating prognosis.

I am grateful to Brain Tumour Research and the Less Survivable Cancers TaskForce for their support to David and me in this effort.

David’s video shows our personal and tragic experience of Glioblastoma. We would not feel qualified to talk about the other cancers. But if we can help - even in a small way - to raise broader awareness and increase funding, that is what we wanted to do.

Is Right to Hope a charity?

No, we wanted to champion expert organisations and charities. So we made a decision not to establish the Right to Hope as a charity itself for now.

Importantly, fundraising done in the name of the Right to Hope does not come to the Right to Hope - there is deliberately no mechanism to do so. Fundraising in the name of the Right to Hope is divided between the nominated recipients on our fundraising page, and goes to them.

Your closing words are for your husband…

If the Right to Hope can achieve anything, it is entirely down to David’s courage. When he first wrote for this website, he said he did not wish to be defined by brain cancer - but by doing something about it.

That is now my sad, but privileged, personal purpose. I hope David will be defined not only by his brilliant flying career, inspirational leadership, and lifelong service to others, but also by his commitment to help save lives - even as he faced the end of his own.

David’s selfless courage, dignity, and humility will forever be etched on me. I could not be more proud of him - and it will always be my greatest privilege to forever be by his side.