Not just any cancer information day…. from the diary of a patient advocate

By Gabi Ott

It is a sunny autumn morning, the sky is blue and the air crispy as I turn into the parking lot of the hospital. Not many cars there, it’s a Saturday. There will be an open day for cancer patients with lots of lectures, workshops and information booths. I greet my colleagues from the German sarcoma foundation. Cheerful faces, laughter. We are two patients and one professional patient advocate who will be at the booth to provide information for interested people, or just chat with them.

I was in a so-called high-risk situation, diagnosed with a rare type of liposarcoma. For the medical specialist team it was clear that a full blast of therapies was required. I grasped rather little of what was going on back then. But what stuck with me was mainly, that treatment would take a long time and I would not be able to work. An eight-months-journey began, during which I was on and off in this hospital going through a multi-modal therapy. Thereafter, regular visits for monitoring over five years followed.

I feel so grateful and so free to enter this building today not as a patient.

I wonder whether I will see some of the nurses who took care of me during my journey through oncology, radiation, and surgery wards. They would probably not recognize me. Probably I wouldn’t either. But I have not forgotten that they have helped me in the most miserable situations: When I had the toxic shock, hallucinating and crying all the time, the nurse gave me comfort and medicine, and watched over me. When I collapsed in the bathroom, the nurse found me and took care. When I had to stay in a machine while parts of my body were heated up to 43 degrees, the assistants changed the music to play my favorite songs. When I told the radiation assistants that I heard about a training for hospital staff on sarcoma in the evening, they all went in their free time. When the pains after surgery were terrible, the nurses patiently and professionally did everything they could to help me.  Often understaffed, mostly overworked and always underpaid, they do a marvelous job every day. I thank all of them for helping me get through this.

However, I get to see two of my treating doctors at the open day. They are renown sarcoma specialists and will be giving lectures. They and their colleagues helped me survive with their highly specialized knowledge, experience and dedication. For the first time, I don’t see them as a patient; I am not scared anymore, and my life does not depend on what they say. I look forward to learning from them. There is a session specifically for sarcomas, with about 30 participants. I ask some questions that I have never really understood, because I realize some other participants share the same concerns. The specialists answer, kindly, neutrally. They do not recognize me, they have moved on to helping other patients. I will be eternally grateful to them.

I return to our sarcoma information booth. Only few people are stopping by, asking for leaflets or just trying to find out what a sarcoma is.  If we can help just one person with useful information, it will be ok. I was lucky to find that crucial bit of information from the German Sarcoma Foundation. I am happy to offer my time and volunteer to support their extraordinary work.

Photos by Gabi Ott, Michi Geissler  and Uli Deck for  SPAGN