Patient Advocate: Jolanda van Rooijen
My name is Jolanda van Rooijen, born and raised in Amstelveen but I have lived in Sweden since 2000. This was then a quality of life choice exchanging traffic jams for nature.
In 2012 I made another personal and mental quality of life choice to exchange working on a senior level in the IT industry by going back to the academic world to pursue my PhD, in my case in the quest for recycling of electronics at the Department of Engineering Sciences in Uppsala.
I have seen close friends and family members struggle with cancer and some have sadly died of cancer. Treatment choices that were often made for them impacted their quality of life in different ways. Whereas their wishes were not always heart or not even asked for I can only guess, as their voices might have been weak, as a result of uncertainty, the impact of a diagnosis, a total trust in the oncologist’s knowledge and for others as they were guided by fear not facts.
Treatments differ per hospitals despite national policies in place, which ultimately leads to differences in impacts of people’s lives and their mental and physical wellbeing. Quality of life for a doctor when considering the cancer patient is likely to be something else as for a patient him-/herself. But how do we know if we do not ask patients or, and if I change the side of the coin, why don’t patients request quality of life more often than they do when they evaluate their treatment options?
A practical example is why so few women are offered a primary (immediate) reconstruction after a mastectomy and why so few women are aware of or informed about that they can request for this. To suffer in silence is something breast cancer patients no longer should have to cope with.
Another example is that life style advice is seldom given to cancer patients, be it food or physical activity in order to avoid recurrence. I would personally wish more research would be initiated in this field.
I sincerely hope to profoundly contribute to the quality of life debate, which the focus group at Inspire2live has commenced. With today’s modern means of communication, the physical distance will not be a challenge for me to add to the debate anyway.