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Each and every day on social media photographs and all kinds of memories pop up that take you back through the years. Some days those memories make me smile, some days they make me sad and some days they make me weep.

This week those memories were more poignant, all the blogs that had written over the years about Seth’s death, raw, visceral, painful, and traumatic.

It’s interesting to read those reflections ten years on and the person who is reading them now, is a vastly different person to the one who wrote each of those entries over those last 10 years.

It would have been so easy on the 10th anniversary of Seth’s death to think of everything I’ve lost. That kind, funny, curious, warm, wonderful, man who I had planned to spend my life with.

Each and every day I am so conscious of what I’ve lost; so sad that Seth and I have missed out the last 10 years together; so angry that pancreatic cancer took away the man that I loved in such a short amount of time; so disappointed that over the years despite everything nothing’s really changed there’s no more chance of survival from  today then there was when Seth died 10 years ago. No discernible change to 50 years ago you have no more chance of survival in 2024 than you did in 1974 when I was 10 years old the thought of that truly breaks my heart when I think of the 10,500 people who are diagnosed with pancreatic cancer each and every year It makes me think about 50 years of heartbreak for all of those people who have died and all the people who love them.

Part of the reason for sharing Seths and my story was to give a voice two people affected by pancreatic cancer to help use my knowledge of the NHS and working  in experience of care to try and help people understand this disease; it’s devastating impact and the need for awareness of the signs and symptoms and also the dreadful statistics.

On the morning of the 14th of June 2014, I received a call at 4:30 in the morning asking me to get to the hospital. For four and a half hour’s I sat at Seth’s bedside listening to his breathing getting shallower and shallower, listening to the Cheyne-Stokes breathing; the death rattle: knowing that with each fading breath Seth was slipping away from me.

Whilst I was sitting beside his bed holding his hand I made decision that I was going to do three things

  • I was going to raise awareness of the signs and symptoms of pancreatic cancer.
  • I was going to make people understand the need for psychosocial and emotional support for people affected by a late-stage diagnosis and a short prognosis regardless of the disease type.
  • I was going to improve end of life care.

The commitments made that morning by me were made out of anger, heartbreak, distress, and the pain of the inevitability of a death from pancreatic cancer.

It would have been so easy to make those commitments silently and then in the overwhelming swathe of pain, grief, and trauma to have done nothing.

Somehow, somewhere I did do something, and I spent the last 10 years continuing to do something, often with a plan, often where things just happened, often by the power of synchronicity and serendipity but always with the support of wonderful people.

Friday was the 10th anniversary of Seth’s death I didn’t want the day to look back and be regretful and angry about his death,  I didn’t want it to be sad,  I didn’t want it to be a remembrance because for 10 years that’s what I’ve been doing marking the day of Seth’s death remembering him and regretting that he isn’t here anymore.

I made a conscious decision this year, but I would do something to celebrate the life of my wonderful, kind, amazing, funny, and weird husband Seth. Friday was a celebration of Seth and his life.

So, on Friday I was joined by over 130 people online and 30 people face to face who came together to talk about creativity at end of life; to talk about stories; lived experience; art; poetry; performance; dance and how those creative means can make an impact.  how they can improve end of life care raise, awareness of pancreatic cancer helps people understand the need for psychosocial support and to help people understand the devastation of the grief and bereavement that lives with you every single day after someone you love so much died.

There were a variety of people, who gave their commitment, time, passion and dedication to Friday and it truly was a celebration and I thank you all.

I would trade anything for Seth, to still be here with me today but there’s nothing to trade and that’s never going to happen….. Seth died 10 years ago and there was nothing anyone could do to change that.

Over the years what I have been able to change is people’s understanding of pancreatic cancer, understanding of the trauma of a late-stage diagnosis and the need for anticipatory grief support. Sharing our story has helped conceptualise Dame Cicely Saunders quote “how people die remain in the memory of those who live on “I know that sharing our experience has helped improve end of life care for others.

I have also been able to share a real time bereavement and grief journey which has lasted for 10 years and which I now know will last until the day I take my last breath.

I am so grateful for being able to turn the most devastating loss into something that’s positive I have grown as a person, I understand so much more about love, life, death, grief, and bereavement because Seth died I have experienced dynamic growth.

I came across this poem by Becky Helmsley called Afterparty a few weeks ago please read it…. And know … Seth I will love you with all my heart forever.

 

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