Image courtesy of breastcaresite.com
First, confessions of a journalist who is optimally curious. I am in many groups that share my interest in health. Most of the time, I watch the discussions from a distance. I am most keen on learning, I want to know how to be better in telling the health story. One of my most favourite groups is Limau Cancer Connection. A random evening can begin like this;
“…..here we smile through the tears,dance in the rains,change the sails,and take one day at a time as we march on….folks….we are in turaba twa bata ,hands in the air and one,two,three…”
I follow conversations that start on the Whatsapp group and sometimes end up on Facebook. Everyone with information to hold another’s hand is welcome to share. The live Facebook chats have seen me question my place as a journalist. If indeed mine is to inform, what is it that I inform the person walking this journey, who has been on a platform like I am in? What do I tell this person who has direct access to the doctor on the same platform to ask all they want to ask and challenge information that they feel does not adequately answer their concerns? The caretaker knows their struggles. They seek answers and comfort from other members of the group. There are organized live facebook chats where experts, survivors, take questions. For the journalist, the ground is shifting.
How does the journalist ensure that they engage at a much deeper level with the audience that has access to more channels of communication? How do I make my journalism better and deeper? But I digress. It is time to clap for the democratisation of the digital space, limitations notwithstanding.
Disappearing Forests in Human Bodies, Chemo and All that Shebang…..
The body that is ravaged by cancer does go through tremendous changes. The cells that refuse to conform, the treatment that disorganises, the mind that refuses to imagine what is happening to the body, it is all part of the journey, as I have come to know from those who are living testimonies.
One day somebody wondered about hair loss. It is the responses that followed that made for a quirky read
Who seriously needs pubic hair?
The forum has zero chills. I like the fact that there is always another side to a story that is always playing out.
“I remember the day I realised that my forest was also falling. I noticed on the toilet bowl and I was like …Haiiiyaaaa kwani even Karura forest clears? I thought only the hill that’s Mt.Kenya (head) does. These are the funny sides of chemotherapy”
I joined the group to learn, to be taught how to be sensitive to the stories of those going through this journey. On this day, I had my lesson. Chemotherapy can sometimes cause hair loss all over your body. Your armpits, pubic hair, eyebrows, eyelashes are not spared the onslaught brought about by chemo.
The stigma that some of those going through the motions of life with cancer can be disgustingly raw and sometimes ugly. There are those whose hearts are broken by lovers who walk away, abandoning them at their time of need. There are those who are hurt by how loose our tongues are, how our words sting, how we are mindless and ignorant.
Loving the body that has known cancer is tough love. I have followed conversations that broke my heart. I have wondered what souls these bodies carry? Where is it they fetch their strength in such abundance?
Ambrose L Kirkland had breast cancer. As a man, he has had his fair share of stigma. First, there were those who were seemingly surprised that he had breasts that can carry cancer. It is tough to survive in a world that thinks it has standards and certain expectations of what maleness and femaleness constitutes. Those who veer off the trail are
‘I have been told that only men who are gay get breast cancer. That I must have a lot of female hormones to get it.’’
Because he has been broken by statements that were mindless, he is on a mission to create awareness about the male body afflicted by breast cancer.
My takeaway is that there is a lot else that goes on in the mind of the body that is battling cancer. You and I who have not walked that journey can seek to know how to make it better. We can agitate for affordable, accessible and reliable treatment and management of the disease.
We can relentlessly demand that leaders are in touch with the reality of cancer. They must wake to the rising statistics of cancer, that they will not be assuaged by promises of ‘we will’ but proclamations of ‘we have, we are’’. Speaking in future tense has become tiresome, cumbersome and unreliable. You, you the ordinary Kenyan who is wondering what you can do for the patient who has cancer, you are in the right frame of mind and right place. Cancer needs you to hold your leaders to account. It needs you to know how to care.
For me, I now know, there is nothing like feeling helpless, wondering how you can be present. I can do more by becoming aware that cancer is a collective responsibility that requires a collective response. Because I am a storyteller, I will do my part, the best I can and tell the cancer story. I will live up to Limau Cancer Connections mantra ‘When life hands you lemons…..make lemonade’’ Limau, just in case you did not know, is Swahili word for lime.