Simone shares her journey living with multiple myeloma in remission
- Blood cancers account for an average of 12 percent of all cancer diagnoses in France annually, according to figures published in 2019 by Santé Publique France.
- The early phase of the medical journey involved a rapid sequence of appointments, blood tests, injections, and treatments.
- Although Simone is currently in remission, her medical routine requires ongoing management.
Blood cancers account for an average of 12 percent of all cancer diagnoses in France annually, according to figures published in 2019 by Santé Publique France. Speaking about the discovery, she explained that the condition was identified during a scan for a backache. Simone noted that while the doctor explained the condition, she could not truly process the information beyond understanding its severity.
Accessing Treatment and Medical Care
The early phase of the medical journey involved a rapid sequence of appointments, blood tests, injections, and treatments. Simone described that initial period as moving through a blur where medical professionals scheduled every step.
I was like a sheep: you follow the path without thinking too much because you are told: you have to do this, that.
She also highlighted the structure of the French healthcare system during her treatment.
What is truly extraordinary in France is that you are taken care of and you don’t have to pay anything.
Managing Life in Remission
Although Simone is currently in remission, her medical routine requires ongoing management. She receives a monthly treatment that will continue for life, carrying a permanent risk of relapse.
The illness altered her active lifestyle. Before the diagnosis, she was an avid hiker who spent two hours each week walking with a group. After experiencing dizzy spells, she had to stop the activity. She now limits herself to short walks in areas where she can easily return if a problem arises. Age has also played a role in reducing her desire to travel far, but the demands of the disease remain a primary factor.
I have to take my vacation time around the timing of my treatments. It’s a juggling act, but my doctor has arranged for me to receive my treatment in another city.
Simone
To manage her care on the move, she consistently carries her complete medical file and her medications with her.
Finding Community Support
Sharing the cancer diagnosis with her family presented a significant challenge. Simone gathered her relatives early on to outline practical arrangements and discuss potential outcomes as a way of confronting the illness.
A turning point in her understanding of the disease came through the Journée du myélome, an annual event organized by the Association française des malades du myélome multiple (AF3M). Attending the event allowed her to connect with others facing similar circumstances.
Finally, to identify with something, and not just a word. I saw people there talking about neuropathies, difficulties related to treatment, and the side effects of medications.
Simone
Six years after first engaging with the AF3M event held in November 2020, the organization remains an integral part of her life. The community provided her with a clearer perspective on the disease and a network for managing the long-term realities of living with multiple myeloma.