Safe –  if you look up the word in the dictionary it means protected from or not exposed to danger or risk; not likely to be harmed or lost.

The synonyms for safe are        

shielded
sheltered
guarded
defended
secure
safe and sound
out of harm’s way
all right

Seth always used to say that being with me made him feel safe and the truth is that being with him made me feel safe too.

When I finished work each night the thought of going home to Seth used to make me feel safe, when I went away for a few days with work the thought of coming back to Seth with a cup of tea ready-made and waiting for me, his home-made food and his wicked sense of humour made me feel safe. Every weekend with its prospect of a whole two days together used to fill me with a quiet joy and the idea of a holiday together was so cherished. Life felt safe.

I know Seth’s feelings were reciprocal; I know because every single day he did something that made me feel safe and sound, when times were tough he was always there with a huge hug, a warm and crinkly hand to hold and a well timed joke or quip that would just break the sadness, ease the tension or release the tears. When my mum was ill, he was there, when my mum died he was there, when there were deaths of other members of the family he was there, when someone needed help he was there. He was always there for his mum Patricia helping her to feel safe at her most vulnerable times. He was there for friends and work mates, he was always there but then so suddenly just five years ago he was gone. Forever gone and then life didn’t feel at all safe.

On 13th May 2014 I was no longer safe and I couldn’t help Seth feel safe, I was powerless; pancreatic cancer rendered us both powerless.  

I struggled so hard for the next 33 short and heart-breaking days to help Seth feel safe; at the time when safety wasn’t really an option, a time when we both knew that what was happening to Seth wasn’t safe, wasn’t controllable.

It was a time when the world was slipping away from us both. Seth was slipping away and my whole world seemed to be slipping away via inevitability of Seth’s death.

By the 14th June 2014 I had never before felt so unsafe, so exposed, as I walked out of the hospital leaving behind the dead body of the man I loved with all my heart. A body which was a shell; devoid of warmth, love and all feelings of safety were gone. A body from which the very essence of a very beautiful soul had just departed.

For the minutes, hours, days and weeks after Seth died I was in a haze and in a world that was unsafe………. I was lost. I was alone, there was no one to protect me from harm or danger, Seth wasn’t there to shield me.

I felt vulnerable and I was guarded; I didn’t want to let anyone in, I didn’t want anyone to share my intense pain;  it was my pain to feel, I defended my grief it was mine to work through, it was all consuming and it still is.

For the first few weeks I was angry

  • I was angry with the GPs who didn’t even examine Seth. If they had they would have discovered that his  abdomen was full of fluid
  • I was angry with the healthcare system, which instead of supporting us at the time we most needed support, ignored our voices and which steam-rollered us into a hospital ward from which we couldn’t escape.
  • I was angry that Seth died in hospital when he wanted to die at home
  • I was angry that a simple catheter could not be supplied when it would have freed us from the prospect of dying in hospital, a catheter that cost £100 and for which there are instructions on YouTube.
  • I was angry that Seth never stood a chance.
  • Most of all I was angry that this insidious vile disease – pancreatic cancer killed Seth without warning

I remember punching the cushions on the sofa until my hands were so curled I could barely unfold my fists and the skin on my knuckles was so red it almost burst. I was angry.

A month after Seth died I knew I needed to do something. So I went back to work, I wrote the journey of our 33-day experience from diagnosis to death and I wrote letters that explained how it felt to be either me or Seth on each of those 33 days.

But I still didn’t feel safe,I felt more and more vulnerable, I felt like there was no possibility of staying out of harm’s way, because I knew I had to share our story and that was a huge risk,  it certainly wasn’t  the safe option.

So that’s what I did, I shared our story and eventually after much soul searching I found safety in the story of Seth’s and my experience, I found safety in the memory of the love that we experienced as soul mates.

Our story became Homeward Bound. Our story has been life affirming for me, I found safety in the response that I have had from people who have watched the play and the film. I have met so many people because of sharing our story and there have been some truly life changing activities as a result

When I set out to share our story it was to

  • Raise awareness of pancreatic cancer
  • Improve the experience and support for people affected by a late diagnosis of a disease which has a short prognosis
  • Improve compassionate care at end of life.

I have done so many of those things and I have started to feel a different kind of safety in the solace of the story and in the creation of what has become #Sethslegacy.

I am so proud of Seth and the way in which he dealt with his diagnosis, with quiet, wise and dignified acceptance as he approached the end of his life, far too early.

For the last 33 days I have struggled, each day reliving our experiences; experiences that are as vivid now as they were five years ago.  For the last 33 days I have been angry, sad, tearful and distraught, but each year the 14th June seems to release all that pent-up emotion. Then from somewhere… somehow… I find the strength to face another year without Seth. Another year to build on #sethslegacy; another year where I am safe in the knowledge that his love, spirit and humour are with me always.

Seth, I will love you with all my heart forever.

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