Exposure has a downside

After my cancer diagnosis in 2012, I became involved in charity work. In 2013 I became an Imerman Angels Ambassador. During my cancer treatment in 2013, I was confronted with taste alteration. This experienced pushed me to develop a concept to tackle taste alteration during cancer treatment. After working on the concept for almost three years, the HungerNdThirst Foundation became a registered charity organisation. An official Public Benefit Organisation, with all the necessary certifications. The foundation's primary focus has been non-pharmacologic management of taste alteration caused by cancer treatment through research, education, collaboration, taste profiling and product development. Fast forward to 2020, we focus not only on taste alteration, but also on nutrition, malnutrition, and I am personally interested in screening for early diagnosis and treatment of prostate cancer, personalised medicine, precision oncology and value-based healthcare.

In June of 2019, I joined the board of the European Cancer Patient Coalition (ECPC). Since then, I have been invited to be part of the Patient Advisory Committee of Data Saves Lives, the GSK Patient Advisory Board, the EU Health Coalition and the ECCO Patient Advisory Committee. I am also a member of the Let's Talk Prostate Cancer Expert Group and an Inspire2Live Patient Advocate. Being an 'active' patient advocate requires some travel, and it is resulting in me feeling as if Brussels is becoming a second home.

Between all this, I did my best to apply for jobs and run the HungerNdThirst Foundation. Fundraising for the HungerNdThirst Foundation and applying for jobs are two significant challenges. Only recently I came to realise that because of my travels and charity work, my network has come to believe that I am in no need of a job and the work which I am doing, the charity work, must be paying the bills and more. I stand corrected that I am partially to blame. I have not been clear in communicating that all the work I do is charity. Charity means that expenses are compensated (travel, accommodation, consumption). Time and the knowledge you bring to the table, though valuable is not translated into any monetary benefits.

Finding the balance is key. I am passionate about my charity work, but something is missing. That something is a paying job! Having exposure can at times paint an incomplete picture of reality.