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On Diagnosis

“Shocked, stunned, amazed, angry,hurt, cross, depressed” all adjectives one would imagine are used to describe the emotions felt when given the diagnosis for cancer. Mine was just numb; zippo, zilch – I didn’t feel anything or rather I couldn’t feel anything – I couldn’t take it in.That was nearly 3 years ago now but feels like yesterday.

I still remember the pattern on the curtains in the hospital room where I was told I had a mass on my pancreas. My pancreas? Throughout my 41 years of life I had, up ‘till then, given no thought to my pancreas. I knew roughly where it might be and roughly that it had a function to control blood sugars but that was the extent of my knowledge. I had no idea you could get cancer of the pancreas.

This, I have since discovered is all too common; not many people know about pancreatic cancer. Some don’t even know they have a pancreas!

Up until a month before diagnosis I thought I was fit & well. Then I began to have back pain – not in the lumber region, but higher up. It felt as if I had a tennis ball strapped to my back – preventing me to get comfortable in a chair and, eventually when lying down. This pain soon radiated round to the front just under my right rib cage and the pain became significantly worse. It was at this point that I felt unable to eat – whenever I did eat I got a searing pain in my gut.

I was lucky – I persistently kept going back to the GP after diagnoses for dyspepsia, IBS and even after being told that wind can be painful! Eventually after visits to A&E I was told I needed a scan as they suspected gallstones. The wait for a scan would be 4 weeks + on the NHS. I was lucky to have private medical insurance through my husband’s work which got me to the Consultant Surgeon (who ended up saving my life) within 2 days. I was admitted for tests straight away (ultrasound followed swiftly by a CT scan) which revealed a mass on my pancreas.

A week later I was in having surgery – a distal pancreatectomy & splenectomy to be precise in which 80% of my pancreas and all of my spleen were removed. It was only afterwards that I discovered that only 10% of all pancreatic cancer patients are eligible for surgery and for people like me whose tumour is in the body or tail, less than 5% of those are diagnosed in time for surgery to be an option. Crickey, with those odds I should have bought a lottery ticket that week!

This I followed with 6 months worth of combination chemotherapy. Gemcitabine and Cisplatin I had through an IV line -  both drugs weekly, every week for 3 weeks, then a week off. I tolerated this really well and progressed on to chemo-radiotherapy – 5FU 24/7 administered by pump via a central line plus daily fractions of radiotherapy for 6 weeks.

To be honest I didn’t much think about what I had got while I was undergoing treatment. It wasn’t until I had finished everything that I took a look back and realised the enormity of my situation. Up until then I hadn’t really taken a look at the statistics. Sure, I knew they were bad but I really wasn’t prepared for the shock of knowing that not only are the survival rates dismal but I was dumbfounded by the fact that over the past 40 years there has been NO improvement in pancreatic cancer survival rates, whereas survival rates for the majority of other cancers have improved significantly over this period.

This is why it is my mission through Pancreatic Cancer Action (www.pancreaticcanceraction.org) to raise awareness of pancreatic cancer to the general public, the medical community and to Government so we can “Change the Numbers” for pancreatic cancer in the UK.

If you want to help me do this, please visit the website and click on “how can I help”  I would love to hear from you.

Ali

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The views expressed in this blog are the authors' own.