Illustrated by Katerina Karali
PAMEMMAZI is a non-profit organisation that supports the fight against cancer alongside the clinical environment provided by the hospital. We aim to facilitate this through offering activities such as yoga, painting, book reading etc.
PAMEMMAZI would like to create a ‘life zone’ in the hospital where patients and families can participate in various activities such as creative writing, trash art, make-up seminars, music therapy and aid respite.
«Life does not end when cancer strikes nor should it be reduced down to hospital visits, doctors’ appointments, IV drugs and endless blood tests. It’s Thursday afternoon. I’m walking out of the hair salon without wearing my scarf for the first time, not because I managed to ‘save’ my hair but because I was not afraid of losing it».
In 2016, Emma Vernikou passed away from cancer at the age of 24. A lot has been written about her, her proactive attitude following her diagnosis of Ewing sarcoma at the age of 19, and her blog Scars & Scarves. Whilst hospitalised abroad, Emma came to understand the importance of psychosocial support being made available in order to aid treatment and improve quality of life.
PAMEMMAZI, a non-profit organization established by her family and friends, realises Emma’s dream to offer art, entertainment and education programs for patients in hospitals. Anastasia Vernikou, speaking on behalf of the organization, quoted a patient: «Being at the hospital for endless hours, PAMEMMAZI is an «oasis». Within the hospital the organization provides daily activities with the helping hand of professionals and volunteers. This is within the grounds of the General Oncology Hospital «Agioi Anargyroi» in Kifissia. More than 900 people including patients, families and caregivers, have participated in the program since October 2017.
The organization’s vision is to create a “life zone” within the hospital, a place where the patients and their families can decompress from the daily rigors of struggle and treatment, through relaxation, expression, creativity and communication. «Our goal is to provide individuals with a person-centered treatment. This will include meeting physical, mental and spiritual needs with emphasis on psychosocial well-being and a strong focus on expression and communication».
Apart from the activities available, PΑΜΕΜΜΑΖΙ organizes forums and interactive workshops, with the participation of patients, their families and health professionals. We aim to promote a holistic approach and the development of psycho-oncology in Greece, creating a safe place where all involved are able to meet, exchange views and share experiences. «We believe that this environment fosters one’s capacity to make informed decisions regarding wellbeing. The patient will thus be better equipped to make choices in order to improve quality of life».
Going forward the organization would like to establish and implement similar programs to be rolled out across other clinical facilities within Greece. It is our intention to also make provision available to adolescents and young adults.
«We understand the importance of strengthening resolve during treatment, in order to cope better with side effects and to promote decision-making around life and health matters. Our aim is to help patients understand the disease and available treatment. With this in mind an individual is empowered to make choices which reflect personal needs, reduce anxiety and regain a sense of control».
PAMEMMAZI offers a variety of activities throughout the week, patients and their caregivers are free to choose and try new things without any time limitation. Some of the activities are aromatherapy, yoga, creative writing, trash art, book reading, make-up seminars and music therapy.
Through daily contact with patients and their families, Anastasia Vernikou observes that they need to incorporate elements of “regularity” into their daily lives. The fact that their life has changed does not mean that the disease should label them. Most of the available cancer treatment methods affect the appearance of patients, which may be the key reason for stigmatization. In addition, «the life threatening and physical integrity of the disease often causes a sense of fear. Nevertheless, the most important element that contributes to the stigmatization is the lack of proper information supported by scientific facts and the transmission of information by the media. This stereotypical presentation may lead to the creation of a sense of patronisation and dramatization of the situation».
By breaking the existing stigma, the organization aims to tackle societal taboos. «Our activities contribute by promoting the positive message that illness does not define an individual». Engaging patients, families, and people who volunteer to help with hospital activities, leads to a familiarity with the disease, gradually eliminating stigma, prejudice and the fear of the unknown.
For the last eight years, Eva Grigoriadou lived and worked in Scotland as an art psychotherapist in clinical settings where patients were able to engage in activities that they themselves had the option of choosing within the hospital. Art therapy has already been an integral part of the UK health care system and it has been offered alongside medical treatments in the National Health System since 1981. «When people are confronted with a life threatening disease or a disease that has greatly changed their daily routine, there is a great need for a holistic therapeutic approach. The psychotherapist can offer patients and their caregivers an alternative way of expression within a safe therapeutic context».
Key to the organization is the close collaboration of a multidisciplinary team that is necessary due to the complexity of the disease. PAMMEMAZI believes in maintaining quality of life throughout the treatment process. By close communication we intend to offer patients the most appropriate and effective treatment in an increasingly complex setting of choices, as well as to improve and positively affect quality of life. «It is important for the members of the team to be governed by a holistic philosophy and not merely a scientific one during all phases of cancer treatment. The harmonious collaboration of the members provides the cancer patient and family with confidence that their hope rests upon a well-established, operational and effective team, that is well coordinated, with accuracy and consistency to accomplish the best health outcomes», Anastasia Vernikou said.
One of PAMEMMAZI’S activities is “Painting & Discussion” that takes place every Thursday and lasts for two hours. A theme is suggested at the beginning of the session to take away the fear of the “blank canvas”. With that said the session is more accessible and with less fear to perform. Patients, their caregivers and the volunteers sit around a table and paint. Eva Grigoriadou undertook the framing and co-ordination of an open group that is not just of therapeutic character, but aims to facilitate expression and communication of thoughts and feelings. «The reason we chose to organize an open art therapy group instead of providing in depth therapeutic sessions is because patients do not have the ability to engage in a weekly treatment program. This is carried out within a safe and confidential space as it would be in any other therapeutic context session. It is neither a painting lesson nor a critique of the artistic abilities of the group members. The aim is to relax, express, create, and at the end of the artistic process, whoever wants, can share some thoughts or feelings with the rest of the group using the artwork as a starting point».
The need to create this group was born out of the observation that many of the patients and their caregivers – although the latter do not immediately admit it – have the need to express their thoughts in a secure and contained space, to meet people with whom they share similar experiences and to think outside of the illness. «The sense of choice and control, unfortunately, could be perceived to be limited due to the illness. This can change through the use of materials and expressive means such as creative activities. The fact that patients can represent themselves on their own terms and through their artistic creation strengthens and validates their sense of identity, which most probably at this stage of their lives is unclear».
According to the volunteer-supervisor of the activity-group, it is important to recognize the impact of the patients’ illness, physical fatigue and pain on the caregiver and to offer support to them also. This can also be tailored to their needs. «The roles within the family are no longer clear. I remember a woman with cancer who visited us on a Thursday, and when she finished her drawing, portraying a tree, she said «I raised my kids on my own, being the “trunk of the tree” that supported them all. I thought how difficult it is to have such a dynamic role and then you need to ask others to help you, suddenly you are the one who needs a tree to sit on and rest and feed yourself with its fruit».
During her hospitalization, Nadia Zorzou enjoyed making soaps. «I really felt like a child and all I was thinking about was which color or shape to choose and of course, what scent».
She describes the endless hours of inactivity in the hospital before finding such activities, in two words: “Loneliness” and “Depression”. We often tend to believe that patients – whether they are our own people or not – lose their interest in habits and hobbies. «I personally did not give up my activities but I should say that I had to adapt to my current physical condition. After mastectomy, I could not perform some physical exercises I did before, but I have discovered some others».
What did you learn about yourself in this difficult time and about the people who were close to you either your relatives or members of PAMEMMAZI?
«I learned to say: I do not like this or I do not want to do this. I learned to look after my body and my diet. I learned to give as part of my choice and not to make everyone else always happy. I know who my real friends are and during my trajectory I have been lucky to be engaged in PAMEMMAZI. I admire the enthusiasm, energy, the unconditional contribution of all the volunteers. For me, PAMEMMAZI is a family and there is no way to visit the hospital without going to see the volunteers. The spark in their eyes and their will to offer, gives me courage and strength».