“I thought I would live a long, healthy life. Then pancreatic cancer changed everything.”

I never imagined cancer would happen to me. And when it did, it was one of the deadliest forms.

I was 64 when I was diagnosed with pancreatic cancer. Until then, I had always been healthy, active and full of energy. There was no history of cancer in my family. I exercised every day, played volleyball at the national level when I was younger, and later moved on to tennis. I enjoyed being outdoors, travelling and making the most of life.

My mother is still alive at 94, and my father lived to 92. I had always assumed I would enjoy a similarly long and healthy life.

I had every reason to believe there were many more years ahead of me.

The small signs I almost overlooked

Looking back, there were subtle changes in my body in the years leading up to my diagnosis.

It began with a very slight cough, so small that nobody else noticed it. Later, I experienced something that felt like mild heartburn. The changes were gradual, and nothing seemed particularly alarming.

I thought it might be stress or my workload. Some doctors suggested it might simply be part of getting older.

But something did not feel quite right. I knew my body, and these changes did not feel normal to me. Fortunately, I continued looking for answers.

Then, while on holiday, I experienced a sudden episode of severe stomach pain during the night. I had eaten a large meal quite late in the evening, so I initially thought that might explain it. The pain was brief, but intense enough for me to mention it to a gastrointestinal specialist.

The specialist referred me for an ultrasound.

I waited a few weeks for the examination. The following day, my phone rang.

They had found something on my pancreas.

Further investigations confirmed that I had stage III pancreatic ductal adenocarcinoma.

Suddenly, the long, healthy future I had taken for granted no longer felt certain.

Learning to live in a changed body

Surgery was strongly recommended, and thankfully, the operation could be done and went well. But I was completely unprepared for how difficult the recovery would be.

My digestive system had been reconstructed, and something as simple as eating became one of my greatest challenges. I struggled with constant nausea.

At the same time, I was determined to regain as much of my strength and independence as possible.

Movement had always been part of who I was. As soon as it was medically safe, I began exercising again, gradually returning to jogging, tennis and my other physical activities.

Then came six months of chemotherapy at as high a dose as possible.

I did everything I reasonably could to reduce the risk of complications. I avoided crowded places to limit my exposure to infections, maintained my healthy habits as much as possible, and focused on giving my body the support it needed.

But eating remained my biggest challenge.

I counted every calorie. Some days, I spent as many as seven hours simply trying to eat enough. It brought no pleasure, but I understood how important nutrition was for my recovery.

After surgery, I had quickly lost around eight kilograms. I set a personal goal to regain that weight, and more, within six months.

During chemotherapy, I managed to gain ten kilograms.

To someone else, that might sound like a small detail. To me, it was an enormous achievement. It represented months of persistence, discomfort and determination.

I am still proud of it.

The question nobody could answer

Early on, I understood something that frightened me.

Even after successful surgery and chemotherapy, there is still a 75% risk that the cancer could return. If it does, there is no cure, and it will most likely be a death sentence.

I kept asking the same question, again and again, to different doctors and experts:

“Is there really nothing more we can do?”

The answer was always the same. There is nothing more to do; the risk is that high.

I found that difficult to accept. Not because I doubted the professionals caring for me, but because I could see how much more needed to be done for people affected by pancreatic cancer.

For decades, pancreatic cancer has been neglected. Patients still face limited treatment options and poor survival outcomes.

I began to realise that if I wanted things to change, I could help make them change.

What started as a personal search for answers gradually became something much bigger.

Finding my voice as a patient

Throughout my experience, I asked questions, searched for information and became increasingly involved in decisions about my care.

I learnt that even the most dedicated healthcare professionals cannot know everything about a patient’s individual needs. Sometimes, they simply do not have enough time or resources to explore every possibility that might help.

That is why I encourage other patients to stay informed, ask questions and take an active role in their care.

I have been fortunate to have open and constructive conversations with my healthcare team. At times, I have asked about treatments outside standard recommendations. We discussed the possibilities together and often reached a shared decision about the best way forward.

I believe the best care happens when patients and healthcare professionals work as a team, bringing their different knowledge and experiences to the same conversation.

I also recognise how fortunate I have been. So far, my case has been straightforward, without challenging complications.

I received excellent healthcare and met people who genuinely supported me. I never felt I had to fight to be heard or get the care I needed.

I know that is not everyone’s experience.

In some ways, strangely enough, my year of treatment, 2023, was a good year. I was surrounded by so much love and support from my partner, family, and friends that I did not spend my days worrying.

Their presence gave me comfort, strength, and a sense of security when so much else was uncertain.

Turning my experience into something meaningful

A few months after my diagnosis, I joined PALEMA, the Swedish cancer organisation supporting people affected by cancers of the upper abdomen.

At first, it was an opportunity to connect with others who understood what I was experiencing. But it soon became much more.

Through PALEMA, we support one another, share knowledge and work with professionals to improve healthcare for patients and their families.

Today, I dedicate a considerable amount of my time to raising awareness of pancreatic cancer, advocating for better care and helping to improve survival outcomes.

It has become the most important “job” of my life.

I had other plans for my retirement than patient advocacy.

Yet I have found a purpose in using my experience to help make things better for others.

I cannot change what happened to me, but I can help change what happens to the people who come after me, and I can try to improve my chances in case of a recurrence.

Living well, while living with uncertainty

It has now been three years since I completed the treatment.

I feel strong. I feel well. I am active again, and I continue doing the things I love.

But I am not the same person I was before cancer.

My body has changed, and so has my mind.

Even when I feel well, the possibility of recurrence is always there, in the background. It is an uncertainty that never completely disappears.

I find it difficult to make plans too far into the future. Before cancer, I assumed there would always be another year, another journey, another opportunity.

Now, I know that nothing can be taken for granted.

And yet, I still want to live fully. I want to stay active, enjoy the outdoors, travel and spend time with the people I love.

Above all, I want to be there for my children.

They are the most important people in my life, and the thought of sharing more years with them means everything to me.

I do not know what the future holds. But I know what matters most, and I intend to make the most of the time I have.

You can reach me at Christina.gerde@palema.org or find me on Linkedin.