April 9, 2018
Guest blog by Suzanne Leempoels who was diagnosed with metastatic breast cancer 6 years ago. Her story raises important questions for EU policymakers.
MBC is more than just a lethal disease. It has a toxic impact on most if not to say all aspects of MBC patient’s lives. A situation that is aggravated by their underdog position, even in the breast cancer community itself. With prevention and runs for the cure in the spotlights the average man in the street has a pink image of breast cancer.
Seeing through these rose-coloured glasses people are not even aware that there is a forgotten group of breast cancer patients for whom their metastatic diagnoses is a death sentence. Their pink is eclipsed by countless black thunderclouds. They can not fight cancer, they must endure it. Their real fights are the endless struggles with the ignorance of inflexible, unemphatic and omnipotent authorities, the lack of knowledge by the general public and employers of the differences between early and MBC and the accumulating side effects of a lifetime treatment. The definition of empathy as “The ability to understand and share the feelings of another” implies that an in-depth knowledge of and insight in a situation are the vital basis for real empathy. The untruthful vision about MBC results in the terrifying conclusion that getting the empathy that is crucial in addressing the cancer related difficulties MBC patients experience in their daily private and professional lives is very often merely wishful thinking.
Being a MBC patient myself, let me ask you some questions:
- Could you pay rent, utilities, food, clothes, transportation AND a treatment with an allowance of less than one thousand euro per month?
- How betrayed would you feel if you had always worked very hard, paid taxes and social charges and once you are terminally ill, you are discriminated and financially starved?
- How guilty would you feel because your disease represents a heavy burden on the present and future financial security of your family?
- How would you tell your young children that you can not always take care of them, that they will see you decline emotionally and physically and that you are going to die?
- How tormented would you feel knowing you will never see your children growing up and that you will not be there to comfort them when they are feeling sad?
- As MBC patients we don’t know whether we still have a few months or a few years to live. What would you choose: returning to work or spending your limited time with your children, now you still have the luck of feeling well enough to take care of them?
- Knowing that cancer related fatigue feels like having a never ending sever flu, would you return to work when there are no adapted arrangements to make your back to work smooth and easy and without having any guarantee that afterwards you will not have to fight to get your sick allowance again?
- How would you manage returning to work in a society where employers expect us to be productive at 100% and our oncologists and our bodies tell us to slow down? Would you, out of loyalty towards your employer and colleagues or forced by an imposed workload continue until the bitter end and a complete meltdown?
- How safe and supported would you feel when health care and employment policies continue to change in an unpleasant way?
- How afraid would you be if you had a very low literacy and health literacy and you do not understand what cancer and its treatments are doing with your body?
- How frustrated would you feel and how unfair would it be if you were denied life extending and in the future hopefully lifesaving cancer drugs because you can not afford them?
- And the final question I would like to ask you. I’m aware that a lot of policy makers are really concerned and involved. Yet, well-intended guidelines and laws often turn out to be ambiguous and in the end overshoot the mark once they are really implemented. Well considered decision making is based on complete data reflecting an overall picture of all related and relevant issues. Do we have sufficient data on all aspects of living with MBC and are we not making the mistake of focussing too much on the clinical aspects and hence underestimating the real-life impact of all non-medical consequences of MBC?
Follow EURACTIV’s coverage on metastatic breast cancer.
Author : MBC Guest Contributor