Friends of Cancer

"The most painful thing about oral cancer is... I can't even clearly say "I love you"

I stepped into the meeting room, and already a dozen or so people were seated and listening to the enthusiastic talk of the social worker. Quietly I sat down, and was in the midst of a "Friends of Cancer" group meeting.

Yes, as frightening as cancer is, you can be a "friend" to it, as long as you accept that it is there, and try to coexist with it, instead of fear and dread what it will do to you and your body. And the meeting was for patients and their relatives, for them to get to know about their condition, understand about nutrition and post-treatment care, as well as get support, whether psychological or financial. 

When I inadvertently saw the flyer at the chemotherapy ward, I though it would be about head-and-neck cancer in general. But the one-hour lecture was focused more on oral cancer, which is but a subgroup.  Mum did not come with me, as much as I would have liked her to, as she returned home after a few hours of treatment at the hospital.

Around the room were mostly middle aged males sitting next to (what I presume are) their wives. The vast majority (a staggering 88%!) of cases of oral cancer in Taiwan is caused by the chewing of betel nuts (penang). Smoking and alcoholism are other causes. It is most common among the lower and working classes and in the countryside, where the chewing of betel nuts is more prevalent, and primarily it strikes the male segment of the population.

Most of the patients in the room had a cough mask on, thus hiding most of their faces. Other than chemotherapy and radiotherapy, the most effective treatment for oral cancer is the surgical removal of the infected area, which often involves the complete removal of parts of the mouth and the lower jaw area. And after the procedure, the patient often resembles someone who has been seriously defaced after a terrible blow to the face. Truth be told, and as judgmental as it may be, some of the faces look frightening, like a  deformation, and I avoided looking at the faces for too long...

But this is exactly the kind of stigma and ostracisation that patients of oral cancer face. People shun them, and employers are afraid to hire them, because they are not "presentable enough. It is bad enough to have cancer, and to deal with the debilitating effects of the treatment, but after the treatment, most have to live as social outcasts, and many dare only go out wearing a mask of some sort.

I was extremely moved by the talk of the social worker, who shared information on getting support. Two people came up on stage, and despite inhibited ability to speak after the surgical removal of much of their mouth, they had such enthusiasm anead optimism for life. Just because you have a life-threatening illness, one that in some cases will almost definitely kill you, does not mean you cannot live and live life to the max. They were depressed and isolated themselves from everyone, but it takes just a change of heart to finally go out and face the sunshine, to realise that the illness does not mean the end of everything, but a new beginning and a new perspective on life. They shared how their relationship with their families have changed, how they have learned to appreciate life and the world much more. "Living day by day,  moment to moment..." It is almost Buddhist in the approach to the world and everything in it. No use beating yourself up about a condition you cannot change, so just accept it, embrace it, and take everything as it comes and goes. And the foundation has done invaluable work to support patients and their families, with work programmes, holidays, counseling services and much more. One such working programme is training oral cancer patients, most of whom have never touched a needle or thread, to work as tailors in the comfort of their own home, making textile carrier bags for sale.

I was extremely touched by their spirit, and at various moments moved to tears by their ability to accept fate, and to continue living despite the physical and mental pain they have had to, and most likely continue to, endure on a daily basis. At the end of the meeting, we were all given a carrier bag, the very kind sewn by a survivor of oral cancer.

The fabric felt especially soft, especially precious, and so very humbling. As I left the room, I looked the people with whom I shared an informative and touching hour with. I walked slowly away, and the corridor of the oral cancer ward filled with the chatter and rare laughter of patients and their relatives.