My Journey with Pancreatic Cancer, five years later…

Hello, my name is Anders Bovin, I am 80 years old, and these days I spend my time between Sweden and Southern Italy.

In the spring of 2017, I received a pancreatic cancer diagnosis. The tumour was considered inoperable because it was located on the head of the pancreas, where the important vessels were attacked. I was offered cytostatic treatment. I saw no hope, no future.

But thanks to meeting a surgeon, Prof. Marco Del Chiaro*, at Karolinska Hospital in Huddinge, Stockholm, I was offered a life-saving operation. It was a very difficult and time-consuming operation – a total pancreatectomy involving the removal of the pancreas, spleen, duodenum, gall bladder, and some lymph nodes. In addition, the portal vein, superior mesenteric vein, and hepatic artery were reconstructed. That was on the 13th of September 2017, 5 years ago. I was 75 years old at the time.

Insulin dependence

After the operation, I woke up to a new life as Diabetic 3c (this diabetes is named differently in different countries!) with total dependence on Insulin for my survival. It took at least three years to understand and master my specific dosage, food intake, exercise, and other factors that affect blood sugar levels. I didn’t know that blood sugar was influenced by many factors, such as stress (positive and negative), sleep, dreams, worry, cold, sun etc. Unfortunately, there is not much research on Diabetes 3c, and most recommendations apply to Diabetes 1.

After many insulin types and dosage suggestions, I now know what works best for me.

Proper nutrition is essential in managing my condition, and my daily diet consists primarily of vegetables (a little potato), fish, chicken, some meat, cheese, and fruit. As we live in Italy, I occasionally enjoy pizza, pasta, ice cream, and pastries, and then I need to plan my insulin and food intake for the day. I drink mostly water, occasionally enjoying a glass of wine with dinner, but never any hard liquor.

I use a continuous glucose monitor, with a signal that warns of low and high blood sugar, to help me keep track of my levels. Over the years, I’ve learned how to efficiently manage my blood sugar levels because I know how long it takes to go back to normal.

Enzymes for digestion

Patients without a pancreas cannot survive without the intake of enzymes at every meal.  There is a lack of research in this area, especially on why the dosage differs from patient to patient. But it is crucial to accept that the stomach does not work as before. A lot of air builds up in the digestive system, causing discomfort and loose stools.

There are very different suggestions on how to take these enzymes, before food, during food, after food or by emptying the capsules into a liquid. I think that all patients find handling their enzymes quite troublesome, and it takes a long time to find the right level.

How I live today

I don’t see many limitations in my life because of my illness. But all the examinations and the surveillance of my health take quite a lot of time. Every six months, I visit the diabetes nurse and podiatrist (foot care). Once a year, I try to get a CT scan, run blood tests, and see my surgeon, the ophthalmologist, and the cardiologist. Unfortunately, this does not happen automatically, and I must coordinate all these visits myself!

Also, I have always ensured I have all my vital medications, insulin, and digestive enzymes at home and on my travels.

I have an active social life, with many trips to Italy and across Europe. I run my own consulting company and am also responsible for finances and conferences for a printing organisation, www.nopa.nu.

But above all, much of my time is spent working with the cancer organisation www.palema.org. I am a board member of PALEMA and responsible for the six healthcare regions that Sweden is divided into. PALEMA has approx. 1000 members with diseases of the upper abdomen. We collaborate with the hospitals, arrange various meetings, lectures and webinars, and the members get much help from each other through closed Facebook groups. Every year, on World Pancreatic Cancer Day, 17^th of November, PALEMA organises a digital meeting with lecturers from the USA (Marco del Chiaro), Germany, and Sweden. Join our discussion HERE.

Epilogue

What has affected me most is my illness and its consequences. The trauma my wife Sonia and I experienced before my operation is also something we will never forget. But through this ordeal, I have also received some incredibly meaningful years and deep friendships with my surgeon and his colleagues, many new friends, connections in PALEMA, and last but not least, close relationships with cancer patients and their relatives.

Some contacted me from abroad thanks to a previous article published in Insulin Nation, where I told my story a few years ago. I look forward to sharing my experience and being helpful to more people affected by pancreatic cancer.

My most important message for this journey is to try to be hopeful, optimistic, and very informed about the illness.

*Prof. del Chiaro currently works in Denver, Colorado, USA, at the University of Colorado Anschutz Medical Campus/Department of Surgery.