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Reply To: Dealing with recourrence and lack of treatments

GCS Project Home Forum Share Your Story Dealing with recourrence and lack of treatments Reply To: Dealing with recourrence and lack of treatments

María Santamaría

Dear Kathy and dear Charmaine (and all others who are reading this post),
thank you so much for your condolences and your supportive words. There are no consolation for such a loss as a mother (I´ve not father either) and specially in the circumstances she went through. Still my brain does not accept she´s gone.
Kathy, the availability of treatmetns for my mother were not based on our Health Insurance options, as in the States, but on the suitability for her (she had previous pelvic radiations and high level of toxicity in her body). Maybe I did not make myself clear enough. Fortunately we have a real universal Health System in my country (altough currently challenged by the COVID-19).
Regarding the translation into Spanish I don´t know which is the best formula. The PDF documents are normally addressed to the general information, not including the Forum. Yet, another version of the website will allow the translation of this relevant part which, as Diane´s well envisioned, is the core of this Project, the dialogue and exchange of experiences. In any case we will need more Spanish speaking volunteers to carry out such a project, but for sure I will be one of them. As a relative I felt hopeless and desperate most of the time due to the lack of information about this rare disease, so I promise to myself to do something about it for others and, above all, in my mother´s memory (not being able to sabe her life has been the most painfull feeling I have ever had).
Charmaine, I have experienced the darth of information about GCS among the medical community. I have the suspicion that the gynecologists that treated my mother had not seen many cases of this disease. We need to use this means to spread the awareness of this type of cancer, as you put it, it is golden to do it in Spanish (600 million people has it as its mother tongue).
Let me know what else I can do here… though we are confined at home in my country at this moment.

Charmaine, don´t stop to share your thoughs during this path. Hope everything is at the same point as your last post.