Contents:

(1) Diagnosis of Cancer and a Sudden Turn After “Cure”
(2) Treatment with No Immune System and the Onset of Sepsis
(3) The Treatment I Received Because I Was in Norway
(4) Antimicrobial Resistance as the “Climate Crisis of Health Systems”
(5) Speaking Out as Both a Cancer Patient and a Physician
(6) When Patient Stories Connect Healthcare and Policy

(1) Diagnosis of Cancer and a Sudden Turn After “Cure”

In November 2021, I was diagnosed with an aggressive form of lymphoma. Although I had been involved in cancer care as a physician, it took time to come to terms with the reality that I was now the patient sitting in the consultation room.

The treatment went well, and I was told by my doctors that my cancer was “cured.” However, that joy did not last long. Within a few weeks, I began to lose strength in my lower body. In a short period of time, I became paralyzed from the waist down and needed the help of a wheelchair. Further examinations revealed that the cancer had spread into my spinal cord. I was told that when lymphoma affects the central nervous system, as in my case, life expectancy without treatment is around six weeks. Once again, I had to face a very harsh reality.

(2) Treatment with No Immune System and the Onset of Sepsis

My treatment plan included four courses of chemotherapy followed by an intensive fifth course prior to transplanting new stem cells into my bone marrow. With each round, my immune system was wiped out, leaving virtually no white blood cells. My body was defenseless, and even a mild infection such as a common cold could pose a life-threatening risk.

It was during this period that I developed sepsis, which is a serious bloodstream infection. With little immune function left, I had nothing to fight the infection with. I developed a high fever and my face turned completely pale. What ultimately saved me was the fact that effective antibiotics were available. Even now, I strongly feel that “without antibiotics, I would not have survived that course of treatment.”

(3) The Treatment I Received Because I Was in Norway

To survive and get through such treatment, extensive infection control and reliable access to effective antibiotics are absolutely essential. Survival depends not only on the skills of healthcare professionals, but also on whether patients can access antibiotics as a life-saving resource.

At times, I find myself thinking, “In many other countries, there may simply not be enough resources to provide the same level of treatment for this disease.” In my own case, I was able to receive treatment with the reassurance that antibiotics would be available if I developed an infection. The fact that antibiotic resistance is still relatively contained in Norway, and that I could receive treatment here, is something I consider a great stroke of luck.

At the same time, antibiotic-resistant bacteria are also on the rise in Norway, and the government has launched a 35-point action plan to curb their spread. Without prudent use of antibiotics and international cooperation, we will not be able to preserve this “life-saving resource” for the future. My own experiences here in Norway are just one example within the broader global trend of increasing antimicrobial resistance.

(4) Antimicrobial Resistance as the “Climate Crisis of Health Systems”

Advanced treatments such as cancer chemotherapy and transplantation are built on the assumption that antibiotics will work when needed. I have learned firsthand that even if we succeed in controlling the cancer itself, the benefits of treatment can be lost if we cannot ultimately control infections.

I see antimicrobial resistance as “the climate crisis of health systems.” If resistant bacteria become more widespread, healthcare could be pushed back by decades, and many of the medical advances we have achieved may be undone. As a result, more people could lose their lives in the course of cancer treatment.

The world is becoming smaller, and people, goods, and microorganisms cross borders with ease. We must not forget that any use of antibiotics, wherever it occurs, can contribute to resistance in the future. Antibiotics are a limited resource that can save lives. They protect the lives of people like me, and I believe they are something we must pass on to future generations so that they can protect the lives of cancer patients who will undergo treatment after us.

(5) Speaking Out as Both a Cancer Patient and a Physician

Until now, I have worked as a physician caring for patients with cancer and infectious diseases. At the same time, after going through aggressive lymphoma and sepsis myself, I also came to know what it is like to be “the person lying in the hospital bed.” Moving back and forth between these two positions has helped me understand, in a much deeper and more multi-dimensional way than before, the anxiety and loneliness that do not show up in test results or scans, the difficulty of undergoing treatment while continuing to work or raise children, and the reality that my life depends on whether effective antibiotics are available.

After completing treatment, I joined an Adolescents and Young Adults (AYA) cancer patient organization. There, I was fortunate to receive training from professionals on how to communicate my experiences as a patient. This opportunity broadened my activities and expanded my network. Since then, I have shared my story in various settings, including study sessions at hospitals, national events, and, at times, at parliamentary and international meetings. In these venues, I have tried to convey how families, healthcare professionals, and communities can better support people undergoing treatment. Working with the Norwegian Cancer Society since 2023 has also shown me firsthand how structured advocacy programs can have a very real impact on shaping and changing health policy.

When I was invited to speak at the Norwegian Parliament in December 2023, I used the opportunity to speak openly about the emotional ups and downs and changes in daily life that cancer patients experience, and to emphasize the importance of antibiotic policy in cancer care. Cancer and AMR can sound abstract and difficult, but when we talk about them through concrete personal stories, they are much easier to understand as “issues that affect me and my family.” Through my advocacy work, I have come to strongly feel that individual experiences can help bridge the gap between discussions in clinical settings and policy arenas and can keep debates on health rooted in “the realities of the people most affected.”

(6) When Patient Stories Connect Healthcare and Policy

Patient advocacy is not a special activity reserved only for a select group of people with particular qualifications. By gradually sharing, within one’s own comfort zone, the hardships and fears of treatment, the words and systems that offered support, and the points we felt were especially difficult, we can increase the number of small circles of dialogue that connect patients, healthcare professionals, policymakers, and the public. At the same time, much of this work is voluntary and requires time and emotional energy. To sustain such efforts without burnout, understanding from employers, flexible work arrangements, and a broader societal recognition that “patient voices have value in improving healthcare and policy” are all essential.

Antimicrobial resistance is not “a problem happening somewhere far away,” nor is it “an issue limited to a small group of special patients.” It is already a real risk in many life-saving settings such as cancer care, surgery, and intensive care. Antibiotics are a limited resource that underpins people’s lives, and patient stories play an important role in communicating this reality.

Many advocacy activities focus on specific diseases. However, I believe that spaces for “cross-cutting patient advocacy,” which address system-level issues such as access, communication, and support, will become increasingly important. At the same time, sharing lived experiences requires a careful balance: deciding “how much to share and what to keep private” in order to protect one’s own and one’s family’s privacy. If my experiences can encourage readers to reflect on the importance of using antibiotics wisely and on the need to incorporate patient perspectives into discussions on AMR, there would be no greater joy for me, both as a patient and as a physician.