CanSurvive Rivonia Head & Neck Cancer Support Group
The vision of the support group was started by Angelo Haggiyannes, a man who suffered from head and neck cancer and who was passionate about giving the patient a voice. He wanted to offer a safe place to anyone affected by head and neck cancer. A place to share stories or simply speak to someone who may understand what one’s day has been like.
Sadly, Angelo passed away in September 2013. In his honour, our Head & Neck Support Group was formed. The first meeting was in November 2013.
The informal and supportive meetings are held from 18h00 to 20h00 on the first Thursday of each month at Rehab Matters, 1 De la Rey Rd, Rivonia.
The objective is to provide information, share experiences, and help with coping mechanisms. There is always a medical member of the Morningside Head and Neck Oncology Team present. These people are leaders in their fields of psychology, physiotherapy, dentistry, prosthodontics and palliative care. Partners and family members are encouraged to attend the meetings as well.
Meetings usually consist of a talk by a guest speaker, followed by questions arising and sharing of individual experiences or problems. Our speakers have presented topics including oncology treatment, alternative treatment, nutrition and diet, pain management, palliative care, sexuality, physiotherapy and various other ways to help one live with cancer.
We believe that patients with head & neck cancer need their own Support Group, as the problems resulting from treatment are unique. The group consists of people that have had any form of cancer in the head or neck area. Patients range from newly diagnosed, to 20 years down the line.
The patients can help each other to cope with the varying problems. For example, surgery, radiation and chemotherapy, in any combination, cause loss of ability to eat. Losing 20% of one’s body weight is the norm. After surgery, but before radiation, patients have to have some, or all, of their teeth removed, as radiation permanently disrupts blood supply to the jaw. Patients lose jaw-opening range, and need on-going physiotherapy that needs to start during radiation. Most have severely diminished speech capacity initially, often needing speech therapy. Some lose the ability to swallow, and need intense swallow therapy involving electrical stimulation.
The most important difference is that it is a VISIBLE cancer. Surgery can cause disfigurement, which is visible to all. People that have already walked this road are able to help and support those who are just beginning treatment.
The Face Value Foundation Trust has been formed in memory of Angelo. The main areas of focus will be research, training and treatment of head & neck cancer.
More research on how current methods of treatment can be made more efficient and effectively available are required.
However, treatment, early detection, nutrition, the support group, assisting with medical claims and having a full time nurse training and assisting in early detection.
Training and educating nurses, dentists and doctors to detect early onset signs and how best to treat patients is the only way to fight this.
Please see www.facevaluefoundation.co.za
For further information email firstname.lastname@example.org OR info@ facevaluefoundation.co.za