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Full text of the below article - written by Shan Cothi

Pancreatic cancer -  My story

My experience of pancreatic cancer is an all too common one and clearly defines why I felt the need to form our charity ‘Amser Justin Time’. Pancreatic cancer is one of the least researched cancers, yet has the lowest survival rate. Much of this is due to its late diagnosis and symptoms often being overlooked. Unfortunately very little appears to have changed over the last forty years.

My late husband Justin Smith passed away in the prime of life, aged 42. In June 2006 he began to experience abdominal pain and three months later had to stop work due to constant discomfort and pain. He went through the usual procedures, from GP to BUPA and had the recommended scans only to be told it was probably Irritable Bowel Syndrome and not cancer. Justin was also losing a lot of weight. It was even suggested it could have been ‘stress’ related due to the demanding nature of his work. We felt the need for a second opinion as Justin’s condition was now preventing him from working and he’d lost three stone. In November he was urgently advised to demand another more thorough scan of the pancreas, as the doctors were obviously missing something. You do not lose weight as drastically as this for no reason. We waited and waited – Justin had the scan and we waited again. The results came after the New Year. Finally, in January we were told by the same specialist in BUPA that it was pancreatic cancer. I remember that moment so well – we both filled up and swallowed hard and our hearts stopped. We felt so hopeless but tried to deal with the news positively. I was so naïve and had no idea what pancreatic cancer meant or even what it was. I remember ringing a friend of the family who was a Specialist expecting them to say “Don’t worry there’s treatment available”.  How wrong I was to assume this. It was evidently clear that what treatment was available was limited and the late diagnosis had confirmed Justin’s fate, that this was terminal cancer. It was just a matter of ‘time’.

Justin passed away eight months later in Sept 2007 age 42.

During Justin’s final eight months he managed to perform with Tigertailz in Milan one last time in June 2007. We even made the trip to Sloane Kettering Cancer Centre in New York in the hope of finding a miracle cure. What we actually discovered and realised was the harsh truth – there was nothing to be done. There was no cure, there was no treatment and there was no hope.

The specialist was amazed we’d even managed the trip, considering  Justin’s condition. All they could do was advise us on ‘pain management’. This was real now and my main goal was to get Justin back home safely. The return trip was  horrendous. Justin’s condition deteriorated further during the flight home. We had to call an ambulance at the airport to take him to A & E outside Stanstead and persuade the team there to sedate him enough to make the journey back to Velindre Cancer Hospital in Cardiff possible. The journey from Velindre to Marie Curie Hospice in Penarth was painful and it was inevitable what lay ahead. Every moment was precious. Justin and I had planned to marry before he was diagnosed but naturally this was put to one side. Realising Justin’s fate we finally married just a few days before he passed away in the Hospice.

I wish I could have taken the pain away. That’s what I remember most…the pain. We were also dealing with the frustration and the harsh reality that there was no cure,  there had been very little research and that Justin’s fate was sealed from a very early stage. Pancreatic cancer is such a cruel disease and is referred to as the ‘silent killer’. The doctors and specialists at Velindre and Marie Curie Hospice were incredible – they have to deal with this on a daily basis knowing that there is nothing more they can do. 

We simply HAVE to invest more money into researching this aggressive cancer to enable us to diagnose it sooner and at least give people a chance in life.

Since the birth of ‘Amser Justin Time’ I have met many other unfortunate people who have developed pancreatic cancer. I find it so upsetting knowing what faces them and knowing that nothing has changed since Justin’s passing seven years ago.

This has to change.

Western Mail article - Shans Story