Understanding Amidst Confusion

Survivorship

Hello everybody.

Thank you for giving me a chance to speak from my heart.

Cancer is a very special cause to me. I am a cancer survivor. I was diagnosed with cancer of the post nasal space (that space where your ear, nose and throat meet) in 2004. I underwent chemotherapy and radiotherapy and one of the things that bothered me is the mental nature of the disease. 

I could stand here and talk to you all about the process, the battle, the diagnosis and side effects but I’m sure that most of you have heard the story over and over again.

But today I want to talk to you about a side of the struggle that is rarely mentioned. I am a husband, a son, a brother, a friend, a cousin, a nephew, a colleague a patient, an acquaintance and so many other things to so many different people.

But sadly enough the cancer journey is a lonely one. It is a journey that your parents will not understand, your friends will not understand, your sisters will not understand and even your doctors, with all their knowledge, education and experience could never understand.   

When your doctor gives you a scale of 1-10, he doesn’t know what level of pain 1 really is. Or what 10 really means. I remember going to my ear, nose and throat doctor and he kept telling me that I need to starve from about 6pm the night before going in for my next check up.

I went in 3,4,5,6 times. And each time he would send me home because he thought I was lying that I had not eaten because of the gag reflex I had developed.

Unbeknown to him, during my radiotherapy, one of the side effects was that my throat was so sensitive that it became extremely painful to yawn because of the area that was being affected by the treatment. So painful that I began to suppress my yawns to a point that after a while I would feel my jaws click every time I yawned. Due to this, my throat had become more and more sensitive to foreign objects. And every time my doctor tried to shove that wooden thing down my throat to examine me, I would gag.

Cancer is a disease that no one but the patient can understand. I remember being told that I would be introduced to a couple of support groups. But this was just a by the way. A statement in passing that till today is much underestimated.

I remember my family jumping up every time I got up to do something for myself. My parents, sisters, caregivers, friends and anyone else that came into contact with me during that period.

I just wanted to be treated as a normal human being. Not as an invalid, not as someone who was on their last breath and needed a push. Just as a normal human being. I craved the opportunity to speak to someone who could understand what I was going through but did not have the strength or volition to look for that person or support group.

My hope is that one day the mental side of the disease is tackled. Yes, early diagnosis is important. Early detection and treatment increase the chances of survival. But there is a feeling one gets when you speak to someone about your experiences and they display that cue. That familiar smile, or chuckle, or tear. By you knowing that they understand something about what you’re going through.

On the days that I would wallow in my sadness and think about how horrible the disease is and how bad the pain is, I would have really bad days. From the moment of my diagnosis, I decided that I was going to be strong. Even if not for myself, for my family. And on the days that I was not selfishly dwelling in self pity, on the days I chose to be strong, to resolve to beat the disease and give every ounce of energy towards being positive, the days would be slightly more bearable.

The power of someone speaking hope and life into your situation goes way further than any doctor could. That is why I want to encourage anyone who has had the privilege of fighting this battle to reach out. To tell their story, to lay themselves bare. Somewhere in you, there is a message to those who like me, did not know who to talk to, how to be positive. People who have no light at the end of the tunnel. No hope or faith to hold on to.

But by listening, or hearing a story told by someone who kind of gets what you were facing, they slowly begin to realize that they are not alone. There are others out there fighting similar battles, suffering similar pains, people doing much worse than you and people doing much better. Some who may not make it and others who will. But every one of them deserves a chance to belong. To feel some semblance of being part of a community, a group, a family. And that’s what sharing your story does for them.

My dream is to have cancer centres all over the country and the world where kids, teenagers and grown people can go in, socialize, exchange experiences, feel like a part of the group, spread the love and the hope to the millions of people searching for just that.

Get out there, tell your story, live your life, take it one day at a time, one step at a time, one radiotherapy session at a time, one bout of chemo at a time, one surgery at a time. But resolve to keep moving forward. Cancer cannot take our resolve away, our fight, our determination. That is one thing we are completely in control of. And even though some of us may not make it to the other side, no matter the outcome, we can say that we gave it our best fight and be proud of ourselves.