On November 17th, 2021 I visited my GP because I felt something in my abdomen. After a series of exams, bad news.
On December 7th we were told that I have a very rare form of cancer: uterine leiomyosarcoma (cancer in the smooth muscles and soft tissue of the uterus) with metastases in both lungs and thus stage 4 (palliative).
I went from a healthy, lively woman in the process of setting up a second business, to a woman who just two days later has to start thinking about the last phase of her life. Surreal. Now after 3 weeks and more consults and scans and hours of self-study it is becoming more and more clear how cruel and rare this type is.
This type of cancer is discovered in 50 women in the Netherlands every year. The numbers are the same worldwide. Insufficient to have a protocol, insufficient data or successes. Insufficient to fund.
Survival (live longer than 5 years) in my phase is around 10%.
Although my story is still a fresh wound, I feel a great urgency to share my story here and to help others with me and after me. That is why I am in need of the following:
*Information on innovative treatment of Uterine Leiomyosarcoma on a European level?
* The best soft tissue sarcoma experts?
*Experience with this type of cancer?
*A network I can use?
While I am still in the diagnostic stage at Antonie van Leeuwenhoek, the best cancer hospital in the Netherlands, and the conventional treatment is still uncertain, I immediately started a complementary/alternative programme on December 8th to inhibit and hopefully reduce the growth of the tumor.
*Sugar, carbohydrate, salt, meat-free diet.
*Meyers cocktail and vitamin C intravenous infusion 2 x week.
*Walking at least 1 hour every day
under the supervision of the Preventive Medical Center in Capelle a/d IJssel. I believe in a natural, conventional and spiritual approach. I have commenced with the first and last with full conviction.
How am I?
Devastated for my 22-year-old son and my husband, grateful for the full life I have led, no regrets, no longings, 50 shades of disbelief, fearless, still full of life, grateful for my beloved family and friends, in the flow and at peace.
I feel a deep love and connection to others, even strangers on the street. And, a huge need to record everything and help other women.
Dr. Trossel from the PMC said to me: “you have to drop everything immediately. Work, hobbies…everything, because you have to become an expert in your own illness.” So advised so done.
On old year’s day, I had my 3rd scan to assess whether the tumor has grown, how aggressive the treatment should be, if treatment is possible, and calculate my life chances. That’s how 2021 ends for me.