The first clinical trial is still ongoing, and has one participant, yours truly, me.
My father died of liver cancer in 1982. That was my first exposure to cancer. But cancer really crossed my path in February 2010 when my urologist infomed me “You have bladder cancer!”
During the early days of my cancer process I was overwhelmed by a strong need to collect and analyse as much information as possible. I not only studied available medical scientific literature, but also ploughed through as many cancer stories as I could lay my hands on. These stories were more than the experiences narrated by cancer patients, as they also included the experiences of medical professionals. In so doing I came across the little green book of a Dutch cancer doctor, Dr. Cornelis Moerman. Some of his remarks struck a chord deep within me, in particular the question he raised ‘Is cancer a local disease or not?’ and his description of the ‘small clinical symptoms’ that can precede cancer. They strongly influenced my decision to try out the Moerman diet. And six years later, that decision has stood the test of time.
Embracing (non) standard cancer treatments
After the diagnosis of bladder cancer and surgery in February 2010, I chose to adopt a lifestyle therapy of nutrition, exercise and sleep instead of agreeing to the regular protocol treatment. Now that you know this of me, I can imagine that you are thinking ‘That man rebels against the mainstream cancer treatments.’ Actually I do not. I embrace both regular and non-regular treatments.
My decision in 2010 was to go for a light operation followed by some changes in living / lifestyle. So far it has worked out well for me. But that is no guarantee for what the future holds in store.
If cancer should return, in any form, then I will re-evaluate the new situation and again make a decision based on the available regular and non-regular treatment options. I personally believe in combinations of treatments, and that the individual ingredients can strengthen each other when combined together (interaction and synergy), and that the same ingredients in various proportions (recipes) can be tailored to the specific needs and situation of the individual cancer patient.
I would like to make a contribution in the following areas:
- more opportunities for ‘something’, a variation outside the normal protocol;
- more modern method (monotherapy approach traditionally) for clinical trials, so that combination-therapy trials may be carried out better;
- more conscious choice of treatment that includes the ethical considerations, when weighing up the “scientific value” against the best interests of the patient.
Personally, I believe in the power and added value of providing options and combinations of treatments. As a patient I have the right to choose for myself what treatment or combination of treatments I want to try out. And a doctor, if invited by me, should also have the freedom of choice to accompany me in this process. We are not that far yet, but this is the direction I want to move in.
During my first two years as a cancer patient I committed my thoughts and emotions to paper. Not all at once, but gradually, I noted down my experiences on a daily basis. Thus began my story.
Subsequently, the need arose to share my experiences within a larger set of experiences, which included not only the stories of cancer patients, but also the stories of everyone who has come into contact with cancer. Why? It was the stories of others that strongly influenced my decisions, the choices I made and still make. I had bladder cancer and underwent light surgery. I have no experience with chemotherapy or radiation treatments. Others do. I have no experience with other cancers. Others do. The emotions and choices of some cancer patients are familiar to me, and others are not.
These thoughts kindled the idea of collecting and analysing the stories of cancer survivors. The concept for a narrative research project was born.
Each situation, each person will be unique, as everyone’s way forward will be.
Examining our different experiences with cancer will lead to a better understanding of what takes place when cancer comes our way.
My story is just my story, one story.
In 2015 a narrative research project was launched under the name ‘Public Program Cancer’. The objective was simply to collect and analyse the stories of cancer survivors who had adopted changes to nutrition and lifestyle into their daily lives. One year and 142 stories further this project has been rounded off. As simple as the project objective was, so are the findings.