Pancreatic cancer two words that I use every day, two words that I truly hate, two words that took away all of my tomorrows and two words that are now part of the very core of me.

This week I received a lovely Purple Star award from Pancreatic Cancer UK to recognise the work that I have been doing to raise awareness of the disease and there was a heartfelt thanks from the charity and a moving speech about my passion to raise awareness. It moved me and when I was asked to respond, all I could say was thank you as the tears welled in my eyes, tears that had the reflection of Seth’s lovely face in them.

When Seth died in 2014, I was lost, my world had collapsed, it felt like I couldn’t  get through an hour, let alone a day, I was angry that a disease could be so cruel that it would take away the man I loved with all my heart so quickly. I was left devastated by the rapidity of the disease, with a gaping hole in my heart and with so much love that had nowhere to go, love that manifested itself in grief.

Just a few days after Seth’s death fueled by grief, I contacted Pancreatic Cancer UK and asked if they could use our story to help others be more aware of the disease . Within six months a film was made with patients and carers explaining how the disease affected people with its own unique brand of devastation.

That seems like a long time ago and since those first few months of being involved in the charities work, I have learned so much more about the disease that has poorest of outcomes for people diagnosed and statistics that continually remain at the bottom of the survival data chart.

I want to remind you all of the facts about pancreatic cancer

  • Pancreatic cancer has the lowest survival rates of any cancer
  • Survival rates have barely changed in the 40 years
  • Every year over 9,000 people die from the disease, 24 people every day, one every hour
  • 26 new people are diagnosed every day
  • It’s the 5th biggest cancer killer and is predicted to rise over the coming years
  • It’s the 11th most common cancer
  • 45% percent of people are diagnosed at A and E
  • 80% of people are diagnosed when the cancer is at an advanced stage
  • Only 8% of people who are diagnosed can have surgery which is the only cure for the disease
  • 1 year survival rate is 19%
  • 5 year survival rate is 3.2%
  • 10 year survival rate is 1%

BUT DESPITE ALL OF THIS

  • Pancreatic cancer receives less than 2% of the cancer research funding in the UK

and

  • There is no public health campaign to raise awareness of the signs and symptoms

and

  • The data collected at a national level does not accurately record the type of pancreatic cancer diagnosed. So its takes Pancreatic Cancer UK to research the true figures and report on the real survival rates.

and

  • There is no additional money to help research this disease

This all seems unreal, unreal that people die every day from a disease that is subject to such inequality.

Inequality of investment, research, awareness, training, data collection. Inequality that falls to the charities that support people with the disease, charities that lobby for change, who raise funds, who invest in the research shortfall and who every day make such a difference to those diagnosed and those whose loved ones become one of the 24 people who die every day in the UK.

My Purple Star award now sits on my sideboard as a reminder of all of the people affected by pancreatic cancer, of all of the pain both physical and emotional that pancreatic cancer brings to families, of the inequality that the disease endures, of all the work that still needs to be done, and of the man who was my world….. Seth Goodburn.

Since Seth died and being involved in awareness raising and campaigning I have met 100s of people like me who do everything they can to support the pancreatic cancer community in its awareness raising. People who have been one of the very few to survive the disease and the majority of people who do what they do out of their love for someone who has died. Love which had nowhere to go, love which manifested itself in grief and then turned  into direct action, action to make a difference for others.

I like many other people was moved the courage and determination of Tessa Jowell who when diagnosed with brain cancer took the opportunity to campaign for better diagnosis, an annual global symposium and more investment in research. This campaign resulted in a national rollout of a brain cancer diagnosis test, the annual symposium and a doubling of research investment.

All of this is predicated on the inequality of access to treatment for brain cancer;  a cancer that has a 14% survival rate over 10 years and in a disease where survival had doubled in the last forty years.

Pancreatic cancer experiences inequality, it doesn’t have a fasttrack in road to the Secretary of State for Health and Social Care or to the Prime Minister. It doesn’t see quotes like those below made in the national press; no it is much more unequal in every respect.

 “I hope that the actions we are taking now and in the future to improve care and research for those confronting a terrible disease will form part of the lasting legacy of an inspirational woman”  Theresa May The Guardian 13th May 2018 Talking about the governments investment in brain cancer.

 “Moved by her bravery and selfless campaigning in her final months, and determined to honour her life and memory with the action on brain cancer that she fought so hard for” Jeremy Hunt the Guardian 13th May 2018 Talking about the governments investment in brain cancer.

In 2014 my adorable Seth was diagnosed with pancreatic cancer and within 33 days he was dead.

Seth Goodburn (October 1964 – June 2014)

He never really stood a chance.

Seth was inspirational, brave, selfless and he asked me to raise awareness in his name and that’s why I do what I do and  because I have so much love that has nowhere to go … pancreatic cancer took my love away from me.

So every day I will continue to use the two words I hate most in the English language…. pancreatic cancer…… using them to raise awareness in the hope that one day, the Prime Minister and Secretary of State for Health and Social Care make public statements backed up by action and investment to end the inequality endured by pancreatic cancer the most cruel of diseases.

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