“You choose to be sick, just as you choose to be healthy. By this, I don’t mean that I will get well, the cancer will not return, that just because I do not wish it, my nausea and neuropathies will disappear, I will not develop mouth sores, I will not ache, and my hair will not fall off. I am not talking about things you can measure with MRIs, CT Scans and biopsies.
I am talking about the time when in spite of the neuropathy in my legs, I went to the mall in a wheelchair with my mother; the time when my hematocrit was so low that I ran out of breath every 10 steps, but still went for a stroll in the most beautiful footpath of the city, even though I had to rest at a bench every 20 meters; or the time when I celebrated my sister’s birthday at a restaurant even though I could not eat or drink anything because of extreme nausea.
I speak about the joys of life… The things that no one else can take away from you, only you can deprive yourself of them.”
* This is Emma’s latest unfinished blog post that she intended to publish. On October 20, 2016 our beloved Emma passed away after a 5 year long battle with cancer.
Activist, volunteer, active member of her school community, excellent team leader of Untouchables 3.0 at the Race for the Cure 2016 marathon, optimistic, passionate for life, always surrounded by loving friends and family, this is how you came to know Emma in her personal blog Scars & Scarves.
As Emma would have wished, the Scars & Scarves blog will continue to demystify and mainstream cancer, breaking down taboos about the disease and to demonstrate that “life does not end when cancer strikes; instead it becomes worth living”, as she said in her first blog post.
We look forward to continuing the relationship you began with Emma, continuing to feature many new and young voices speaking out about cancer. Feel free to share with us your personal stories as well as ideas of how the blog should evolve, because we are stronger together!
Emma’s vision and unique smile will continue to inspire and guide us as we launch this new chapter of our blog in order to show that “life does not end with the diagnosis and shouldn’t become reduced down to hospital visits, doctors’ appointments, IV drugs and endless blood tests. Life goes on and it’s in our power to continue living it ridding ourselves of all taboos and prejudices.”
Let’s all continue together, for Emma!
Anastasia, Emma’s sister
As with every one who is familiar with you, lovely intelligent courageous Emma I needed to mourn your passing.
I learned about it from your Mom and your aunt. I had the pleasure to seeing them and speaking about it
in person when I returned from Greece after a long absence. As is often the case when one is not in the country and cannot return right away to one has always thought of the departed to be carrying on with her life
, you mourn from afar ..but then when you return home a few months later you experience
this loss all anew, the huge empty space.
Emma you left and we are all now responsible for carrying on with your message on what needs to be done about patients and the world of oncology. Especially young persons who are not meant to experience such a difficult
task in a place where there can still be huge disconnects regarding the rights of patients. To be educated on what
is right and what these rights may be.
I would like to emphasize the importance of giving a cancer patient the respect his/her unique personality
requires on the path to healing. And yes, especially because this path can be a long and winding road.
To remember that a patient has rights and yes, on this long road should be able to refuse standard procedures
Get a break from it all for a day when he or she had enough of all the standard procedure, get a break, a holiday
from it all. Most of all, as experience tells me even when the treatments seems to swallow one up to have
options to distract the patient, to have joy and not loose her/his love for life as beloved Emma so well showed
Emma you will live on and as you do, I wish for your message not just to be remembered but to be fulfilled.
I send my love to your family and all those out there who love you!
There is a saying among oncology patients “you get married to your oncologist”. This means that when you have to deal with this complicated illness which, in most of the cases, lasts for years with maybe various relapses or the threat of a relapse, the doctor should respect people, be supportive, knowledgeable, embrace the power of information and communication technologies to support people with the best available information, while respecting their individual values and preferences. Let patients talk and listen to them carefully. Should assess each situation carefully and help whatever the situation. Use EVIDENCE as a tool not as a determinant of practice. Work cooperatively with other members of the healthcare team. Be proactive advocate for the patients.
Our beloved Emma is in our heart every minute. Thank you, Anastasia, for continuing to keep Emma’s corner alive with “light cancer stories,” because we need it. Accompanying Emma in her journey, we learned a lot about how the Greek medical profession treats cancer patients, and there is more we want to learn from others. Emma was always assertive, and wanted to know details and options on treatments, as well to have her family’s support the implementation of her decisions regarding her care. I would really like to hear stories of friends of this blog about how they dealt with their own issues successfully. From your experience, what are the three most important talents and characteristics for a doctor taking care of a patient with cancer?