Writing about cancer most weeks can be extremely challenging. Unfortunately in recent times there has been very little positive to mention. This is one of the most difficult posts I have worked on. Primarily because I know the incredible Lesley (@lgoodbu) who has written it. But mostly because after at least 10 years of fighting for better cancer care, almost nothing has improved in the pancreatic cancer sector.
You will read about the terrible statistics affecting people with the disease. How big a killer it is, but most astonishingly, that no progress has been made in terms of survivorship. If I put my ‘business hat’ on, how can such a serious issue not have improved in at least 10 years? I cannot accept that after so much time and money invested, things are no better! Does cancer have too many vested interests involved in it? So many people making money from no improvement? Why is this allowed to happen, not just here but internationally?
Here is Lesley’s very sad and personal experience. Unfortunately becoming more common, not less!
“A cancer diagnosis is devastating for both the person who gets it and for those nearest and dearest. It is hard to digest, the thought of treatment, the possibility it might not work, the enduring hope that it will. Then there are the conversations with more distant family, work colleagues and friends then the little sympathetic tilt of the head, that acknowledgement that cancer has invaded someone’s life.
That head tilt that is meant to be sympathetic, but can seem empty and patronising. One in two people in the UK will be diagnosed with cancer, and for most the sympathetic head tilt is about the diagnosis, the thought of treatment, surgery, radiotherapy, chemotherapy and all that those interventions entail. Thankfully less often it is for the fact that the cancer diagnosis is late, it has spread, that the disease is treatable but not curable.
I have been the person who has given others that signal, and it was meant in the most supportive way. Whilst hearing of another cancer diagnosis affecting people within my circle of family, colleagues and friends. However, over the last seven years, I have met people who didn’t have the luxury of the repeated head tilt. They were people with a pancreatic cancer diagnosis. A cancer where 1 in 4 people die within month of diagnosis. For every 10 people diagnosed, one gets the chance of potentially lifesaving surgery. Two get chemo, and seven of out ten people get NO treatment whatsoever. Whilst 49% of people are diagnosed at A and E, pancreatic cancer receives less than 2% of overall cancer research funding in the UK. As a consequence the statistics are stark and it remains at the bottom of the graph for survival rates. That has barely changed in 50 years!
In 2014 I like many, I knew little about pancreatic cancer. I had a vague notion that it was “one of cancers you wouldn’t want to get,” but apart from that nothing about the signs and symptoms and how vague they are. I had no idea of the stark statistics that put pancreatic cancer at the bottom of the survival rate chart. Recall the advances that have been made in the last 50 years in all areas of life, technology, the internet, cancer screening and treatments. But the survival rates for pancreatic cancer are still on par with the 1970s with the 1-year survival rate at 23%, the 5-year survival rate at 7% and the 10-year survival rate at 1%.
You may ask how do I know about these statistics and what is the relevance of the head tilt to me? In May and June 2014, I was the recipient of that sympathetic head tilt because my husband Seth and I discovered he had late-stage pancreatic cancer. He was told he had days, maybe weeks to live and he died in hospital 33 short and heart-breaking days after his diagnosis he was 49 years old!
After Seth’s death I was determined to change things. I decided there were three things I hoped to change. Raise awareness of the signs and symptoms of pancreatic cancer. Highlight the psychological impact of a later stage diagnosis with a short prognosis. Finally to improve end of life care. In the last 7 years I have been the recipient of that sympathetic head tilt many times, in my awareness and fund-raising work for Pancreatic Cancer UK. In my work with researchers to provide psychological support for patients and families who receive a pancreatic cancer diagnosis. Also in sharing Seth’s Story via a play, a film and an educational resource to improve end of life care.
Unfortunately, little has changed in the last seven years in terms of survival rates for pancreatic cancer. But through my work, and that of a dedicated army of pancreatic cancer patients and families who loved ones have died, many more people are aware of the signs and symptoms. More people understand the psychological impact of a pancreatic cancer diagnosis via the work with the NICE Pancreatic Cancer Recommendations and the Quality Standards, and researchers are starting to develop research proposals in this area.
Finally, I know many people have taken action having seen Seth’s Story and made improvements to end of life care. However, I still receive those sympathetic head tilts usually from former cancer patients who I work with across NCRI and other European and International Organisations. They know that pancreatic cancer is at the bottom of the pile in terms of survival, investment in research and there is much to do to improve survival rates.
I look forward to the day when a cancer diagnosis doesn’t prompt a sympathetic head tilt! Most of all when the pancreatic cancer survival rates improve. When people are more aware and pancreatic cancer sees an increase in research funding to give it the investment needed to make a tangible difference to those affected by this most cruel and currently hopeless of cancers. I look forward to this day as I cannot bear the thought of people experiencing the devastation, pain and emotional turmoil that Seth and I faced together as we approached his imminent death.”
Thank you so much Lesley for sharing this very difficult story, and doing the incredible work you do in extremely difficult circumstances.
More information visit www.purplerainbow.co.uk and to subscribe to the Purple Rainbow Pancreatic Cancer Podcasts.
Pancreatic cancer kills 1 in 4 people within a month please find out more about the signs and symptoms. Be aware might just save a life. #sethslegacy
Thirty five years ago I remember campaigning to stop breast cancer before it starts. Everyone agrees that it makes sense. Big pharma stops such thinking immediately. Rachel Carson campaigned many years before us but was stopped in her tracks by both the medical profession and big pharma. The profits from cancer cure are so great that it’s 1% spent on prevention is lost in the sea of meaning.
I was invited to attend a meeting last week by a group of heath care professional – GP’s, University Researchers, Macmillan and NHS staff from. “Right by you” was the project’s campaign slogan. CRUK.are conducting a similar project inviting lay people to get involved. As I sat through the meeting I was transported back in time. I heard the same story of how this advisory group want to improve cancer care. Why now I thought. Have the many reports carried out by cancer charities and gov funded researchers not arrived at this urgent need to improve cancer care decades ago. My heart sunk at the pointlessness of waiting yet another decade of producing more reports saying the same thing. Most of these are in my research findings and are from Macmillan.
I don’t want to appear too despondent chris but this is why I consider working with terminal patients more of an urgent priority now. They need the support that Macmillan promise to provide but never deliver. I suppose 40 years of campaigning has made me angry and tired. Although I will always find the energy and the will to support cancer patients themselves and those families recently bereaved.
Firstly, thank you so much for taking the time to share your own very personal views and experiences. It is always interesting to get the feelings of people that work inside the cancer system. Unfortunately your own, represent mine too, and I can already see the old work being introduced with new titles.
Unfortunately all the people that are at the top of the chain within the sector have done nothing new for so many years. The same names have been there for years! This includes charities, where Cancer Research and Macmillan Cancer Support and the worst examples of that. People at the top within the NHS are basically Government puppets waiting for their healthy pensions. Pharmaceutical, runs things because of the money involved. Now mostly focussing on Covid.
I despair too, as during my 10 years I watch the same campaigns come round on a regular cycle, as millions of donated pounds get spent on lobbying the Government?? I’m sure nobody who donates to cancer support expects that!! My hope is that patients will force the change that we need in this lazy self-serving sector.
Thank you for all the incredible work you have done and continue to do! I’m with you every step of the way! Chris