Help and Support groups

If only we knew all the answers. If only everything that happens makes immediate sense and provides and instant clarity. If only we knew what the great plan was for us and what path we are to follow in the face of adversity in the face of all this uncertainty.

What if we are told from every person we meet, from everyone who knows, from every book we read that we must trust, that we must have faith, that we must have conviction.

When all these ifs and what ifs and what could have beens and what should have beens plague our minds and plagues the essence of our souls, as the strength of our imaan ebbs and flows like the tides at sea. It is then that we need to seek help.

What kind of help we then ask. Is it the help we ask when we kneel in supplication? Is it the help we ask when we see our physicians or is it help of a different kind. Help which has knocked on the door of a community closed to its benefits, blind to its existence. A community who equates seeking help with disbelief and with lack conviction.

And if we were to seek and accept this help, does this belittle our faith, does it belittle our conviction. Or does it acknowledge that we are just beings, searching like everyone else, not knowing all the answers and at times only having questions.

What then will this help achieve we ask.

It would be like being in the desert afraid and lonely only seeing dunes of sand for miles and miles and then on the horizon a glimpse, another being, then we look in a different direction, we see yet another then another and all so quickly we are no longer alone and afraid in the desert but at an oasis of hope. An oasis of souls who like us have thought they too were lonely and stranded in the desert.

So we have faith, we have conviction and we have this support. And it is here available to us and this was only possible through faith, through conviction.

This support is a place to work through the what ifs, could have beens, should have beens and questions which plague our minds and we are given skills to use in this, the face of adversity and in this face of uncertainty. So that our Imaan no longer ebbs and flows like the tide at sea but stays firmly on the shore looking out and seeing our path being shaped in the distance...

dealing with changes

the curtains are closed blocking out
the light
the windows are closed shutting out
the noise from traffic
the room is filled with nothing but
the sound of emptiness and
its almost deafening

I cover my ears blocking out
the noise
I am still
allowing my rambling thoughts to be heard but
there is only silence except
the noise of the
emptiness

it enfolds me
it crushes me
its noise is too much

so

I uncover my ears
I open the curtains
I let the light in
I open the windows
I let the noise of the traffic in

I am still
allowing my rambling thoughts to be heard
but there is no rambling
only thoughts flowing and
the room is filled with everything
but emptiness and
the sound of its silence.

eyes wide open

We look into the mirror each day. We style our hair, donn our hijaab, and we do whatever we can to perfect our outer beauty. Our physical appearance. The face pf the person that goes out and works, studies, that interacts with many people at a time, at work, places of study, shopping centres. Have you ever actually made a mental note of the amount of people we see in any given week and the people who see us. And what is it that they see. Or more accurately what is it that we perceive that they see.

Do they see what we see when we look in the mirror?

Someone asked me today whether it bothers me that my right eye is half closed and that I have to wear spectacles. And my reply was that yes it did in the beginning and then I realised that there is nothing that I have been doing that I do less of that whatever vanity I possessed had already been stripped by my loss of hair during chemotherapy, that when you battling for your life, that a half closed eye as she put it is completely insignificant and that I think of it as half open.

And then I realised that she always covers her chin with her Hijaab and I asked her, why do you then close your chin and she lifted her hijaab to reveal a chin covered in deep scars from teenage acne. She further relayed how this has affected her ability to do things, how this acne has always stopped her from interacting with people, that she is afraid of rejection, of people staring.

And then I realised that there are so many people out there just like her, who limits their potential because of physical imperfections or is it emotional imperfections, I wonder.

Yes I have been stared at, questioned, and my blunt reply is always the same. Three words I have cancer. Does it stop me from going out, from speaking in public from interacting, no it inspires me. It inspires me when someone says, " hey your eye is half closed" and I am reminded how open it really is. Because even though most people have eyes that open their eyes are completely closed.

That some people have acne that they cover, should they not rather cover their hearts to shield it with Taqwa. Should they rather not look in the mirror and instead of seeing the imperfections see the perfections.


So what is it that people see when we interact with them. Do we let them see the face we chose to wear that morning or the one who looks into the mirror with closed eyes.

So I go out and I interact with eyes wide open.

Addressing Stigma's

When I was first diagnosed with cancer, I met many people who knew someone who had cancer or who was beaten by cancer. And I never had the fortune to meet any of these cancer afflicted people.

When I was in the company of people who knew about my illness, they used to shy away from me and I wondered at times whether it was my illness that made them uncomfortable or my openess in the expression thereof and I realised that it was the latter.

I started feeling as though I was alone and that there were hardly any real people with this disease. People that I could actually see and not those just spoken about by others, read in statistics or found on the internet. I started wondering whether the 10 million people who are diagnosed every year, actually even lived in Cape Town for they certainly didn't exist in the muslim community.

I recall my first visit to the Oncology Unit at Groote Schuur, sitting in the waiting room with many others who were predominantly aged 50 and older and whose faces showed the pain of their challenges. I recall leaving the waiting room and standing outside convincing myself that I was definately not meant to be there that I was too young to have cancer that I was healthy and definately in the wrong place and certainly in the wrong time in my life.

Little did I know then that I was in exactly in the right place in the right time of my life.

I recall listening to thikr on my ipod and happily waiting for my appointment and exploring all the notices on the walls and observing the people like I was witness to a movie I had just switched on.

Then a lady walked up to me and asked are you in the right place? and I replied with an uncertain yes and she then said but you dont look like you have cancer.

It was then that I first became aware that to most people cancer had a face, and as the ensuing months passed I realised that to most people I did not fit the cancer profile that they had conjured up.

What was a cancer survivor supposed to be like, to look like and of what ethnicity or religion. I searched for these answers asking friends, family, strangers and no-one could really give me a clear reply except to further raise an eyebrow at my apparent "denial" or from my perspective "positivity"

My suspicions that the stigma attached to those who have cancer were further proved by personal experiences with people.

In exploring this stigma I experimented becoming very vocal about my illness and expressing statistics in conversations about the volumes of people who have cancer. conversations which were quickly changed to more comfortable subjects.

Why is the word cancer so uncomfortable, why then does it create such fear, create such aversion. Why?

Its because the thought of dying makes most people uncomfortable that most people knows someone who has been beaten by cancer rather than someone whose time it was to return to our Creator. Its for fear of getting cancer. Its the illusion that this is something that only affects other people, something read about in books or seen in movies. Its people who are thin. People who have no hair. People who are to ill to be out of bed. People who are unable to live a normal life. People who unable to enjoy life and people who are perceived to be consumed by organic food and prolonging their days.

I found that the stigma was worse in the muslim community, that cancer was not something spoken about. That muslims dont get cancer. That you must have done something wrong that you are being punished like this. That your disease is a bad omen sent from your creator. That good muslims they dont get cancer.

So I became everything the perceived cancer wasn't. I decided to give cancer a make-over!
I became comfortable and in touch with my own mortality. I looked cancer in the mirror and decided I was more than that. I had no hair, I lost weight from my chemotherapy, I was ill but I was better off than most people who complained incessantly about constant physical problems. I thought about those things that would make me happy and started doing that, I ate more healthy and more chocolates. I empowered myself with the knowledge that Allah loves those whom He tests, that this illness that I have that everyone dreaded was a blessing and not a punishment.

I became an artist, scarf stylist, aspiring magazine editor, a Orphanage activist, a da'wah volunteer and best of all a cancer activist! and along the way met many wonderful dynamic cancer survivors who were on the same journey to live life to the fullest.

So the stigma that cancer receives should be re-thought by those who created it. Because if having cancer means having a renewed love for life then I choose cancer anyday.

Cancer does not discriminate between age, ethnicity, culture or religion.

It reminds you every moment every day to be gratefull for at any moment at any day that this could be the end or just the beginning....

A chat to some med Students

April 28, 2010

Today, I chatted to 2nd Year Medical Students who have chosen to specialise in Oncology. The are covering an area which involves relaying diagnosis and prognosis to a patient.

My role was to provide them with some insight of my experience and how I thought the Attitude of the Dr. can change the way a Cancer Survivor views his/her diagnosis.

Firstly let me define a cancer survivor. If you have been diagnosed with Cancer you become a Cancer Survivor, whether you are in remission, or fighting cancer or have been beaten by Cancer or even if you have a loved one suffering with cancer.

Although I was briefed by the Lecturer before the session, I was still apprehensive of what to expect and of the questions that would be asked but was comforted by the knowledge that my sharing was going to help shape the minds of our future doctors and help pave the way for a better Doctor-patient experience.

As I opened the lecture room door, I felt a sense of concern as I saw eyes belonging to students who could be aged no more than 21 staring back at me. Eyes filled with hope for the future and faces with expressions which conveyed the invincibility of youth. Was I too shatter their realities with my story, was I to render them speechless at the rarity and medical incurablelity of my typer of cancer. Or was I to encourage and inspire these young minds. Was it the truth they needed. Or was that too much. Perhaps it was hope they needed.


So I shared my story and changed grim details to ones with room for hope. Changing terminality into immortality. Changing a poor prognosis to one who lacked enough research. Changing medical information to personal transformation.

But despite this, the obvious shock and disbelief which presented facial expressions they were not even aware of left me reflecting.

I was never told that I had cancer only that I had a growth, a lesion, a tumour, a malignant neoplasm. Ofcourse I knew what these medical euphamisms meant, but I was never actually told those words. " You have cancer" It would have been so simple. 10 million people per year are diagnosed with cancer. You are never told that people are diagnosed with malignant neoplasms! So simplicity was the key. The truth another, perhaps like me Dr's want to shield us from the harsh realities that we will face but there is no changing the truth, you can make it a bit more glamorous, but the facts remain the facts.

Dr's are not God a fact which Dr's at times forget or perhaps their degrees have not allowed them to think otherwise. That even though they use every medical avenue available to them, they are still unable to determine the exact time and date of the end of life. That this power does not belong to them. That they are just an instrument of healing that has come from a greater power which is not documented in medical textbooks. I was living proof of that.

All statistics show that my time will near its end and yet since my diagnosis my time has only neared its beginning.

Then the questions came, the what ifs, the could have been's. My reply I cant change what happened but I can change the way I wish to see it and my attitude towards it. My advice: to be simple, to be truthful and to acknowledge the limits of medical knowledge. To encourage and support and to be part of the journey of not only the patient but of life.

So I left them with hope that altho' their medical knowledge will always be limited. Their belief should never be...

And so I closed the door leaving eyes filled with tears, but still filled with hope and invincibility.

Gratitude

We wake each day automatically using our sight, our hearing, every part and function of our body with out the thought that at any minute even just a small and what may seem as an insignificant part of our anatomy can stop functioning.

That every bat of our eyelid is a blessing from Allah SWT. That every movement of our eye is a blessing and every other ability that we have we owe to our creator.

We may know this but we are never really conscious thereof until a part of this anatomy of ours no longer functions, until something that to us is so insignificant takes on significance.

On this journey, I have become acutely conscious:

Every time my eyelid closes because I make dua that the next day it may open again. Every time that I look to the right so that I may look to the left again. Every time that I lay down, that I may get up and walk again. Every time that I have pain that I may be pain free again. Every time that I feel challenged that I may feel courage again.

And every time that I take things for granted that I may feel gratitude again.

Let us appreciate every movement in the knowledge that this is only made possible by our Creator!

Defining Cancer

Events unfold. It changes us and over that we have no control. But what we can control is how it defines us, whether we evolve because of it or stagnate and let it claim us as a victim. It is then that we become a victim of circumstance or it is then that we allow what has happened to us become a catalyst for change. A better change.

That is how I am viewing my challenge and my struggle with Cancer. Some days I feel like a victim of fate and of circumstance and it is then that I reflect on exactly what victimises me so is it my attitude or my perception and when I change both that I am no longer a victim but I begin to evolve again. I begin to grow into a new me everyday!