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Sitting with his back to the door, looking small looking vulnerable; barely two hours had passed since the last time I saw him, but I knew things had changed.

Everything was exactly the same I adored Seth, he adored me, I would move mountains for Seth, he would move mountains for me, we were as one… our love and our bond was unbreakable …. or so we thought.

Many people retire early at 50, some retire at 60, for me and Seth we were heading for retirement at 67, we had plans for retirement. Which involves travelling around the whole of Italy in a camper van seeing all of the ancient roman sites that were on our huge list of places to go. But in the meantime, the plan for the intervening 18 years until retirement so many fabulous holidays planned, lots of exotic places we thought the world was our oyster.

But that all changed on that day in May 2014, the day that pancreatic cancer swept into our lives, with its dark and malevolent presence, a presence, obscured, hidden, slumbering away for years and then suddenly a shocking swift and sudden manifestation. Its diagnostic confirmation taking place on the unluckiest of dates in May 2014 the 13th.

For eight years now I have been involved using Seths and my experience to shape strategy and policy, to shape thinking, to influence services, to prompt service development, to raise funds, to campaign, to develop research proposals, to raise awareness of this insidious disease … as part of Seths legacy, in his memory and in his name.

There have been balls, charity treks, bike rides and runs, quizzes, podcasts, digital stories, committees, events, interviews on radio, in newspapers and on the TV, pottery, badges, relentless activity on Twitter and Facebook along with countless other activities. A whirlwind of things to do, things to keep Seth at the centre of my new unwanted life, a life alone, definitely not lonely but definitely alone. The activity has created Seths legacy with thousands of people who never met Seth, feeling like they do understand a glimpse of this wonderful, kind, loving curious and hilariously funny man.

But has all of this activity helped? has it really made an impact on the pathway of this dark insidious life shattering disease? The honest answer is…. I don’t know. ……. one thing I do know it made an impact on me …it’s given me purpose; it’s given me hope at the most desperate of times.

6th October is Seths 58th birthday if he were alive, he would still have 9 years to go until his retirement. 9 years until he gained his freedom in the camper van that would take him on his travels to his beloved Italy. But he is dead pancreatic cancer killed him 8 years ago.

The voice of people affected by pancreatic cancer is so important in the strategic and policy approach to the disease, it is important in subjects that are raised with government, it is important in a disease that has such poor outcomes with little progress in survival over 50 years.

It’s important to the people affected by this disease, for those few who survive, for the people undergoing treatment; people with the tentative hope of cure, for those undergoing palliative therapy, for those where the inevitability of death is close and for those who are left behind after their loved one has died.

The coming years have to make a bigger difference, they must have the voice of lived experience front and centre, representing all the various experiences of those affected by this disease. We have to hear these voices loud and clear and they have to influence all aspects of the future of this disease, not least because for someone like me whose has experienced the death of the person who meant the world to me, who was my world,  the involvement in trying to change things is a lifeline, its gives me purpose, it keeps Seth close, it feels like we continue to do this work together as the wonderful team that we were in during his life and continue to be after his death

Happy 58th birthday Seth, I will love you with all my heart forever.