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....
Thursday, May 13, 2010
Monday, May 10, 2010
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.
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.
Wednesday, May 5, 2010
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!
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!
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!
Friday, March 12, 2010
Sharing
I always imagined the scenario of sharing my story with people for somehow I always knew that the time would come that I would start this process. But some how the day that I shared my story to a big group of strangers did not quite turn out the way it did when I imagined it.
In reall life it was way better, more therapeutic and not at all as daunting as my imagination had allowed. Sharing my own personal journey, the one from my heart the one that I am travelling on not the one I write about, for I realise now that these paths are very different. The one is walked upon and the other looked upon, Its almost as though at times you living someone else's life, for the reality of this life is at times just surreal.
So I told my story the unfashioned truth, the lows and highs of a life with cancer. And then I got that cancer look, the one I get when people know. Its like they box you, now I have been categorised and whatever I say from hereon doesn't matter all they see is the cancer. All mindless conversation now turns into questions, disbelief and an interest in a little thing called a tumour. Funny how such a tiny growth can make such a huge impact on people and their perceptions.
There I was at training to be a volunteer for CANSA. The very thing that led me to this point I was volunteering my services for and it was then that I decided to share my story.
And the rest as they say in the classics "is history"
In reall life it was way better, more therapeutic and not at all as daunting as my imagination had allowed. Sharing my own personal journey, the one from my heart the one that I am travelling on not the one I write about, for I realise now that these paths are very different. The one is walked upon and the other looked upon, Its almost as though at times you living someone else's life, for the reality of this life is at times just surreal.
So I told my story the unfashioned truth, the lows and highs of a life with cancer. And then I got that cancer look, the one I get when people know. Its like they box you, now I have been categorised and whatever I say from hereon doesn't matter all they see is the cancer. All mindless conversation now turns into questions, disbelief and an interest in a little thing called a tumour. Funny how such a tiny growth can make such a huge impact on people and their perceptions.
There I was at training to be a volunteer for CANSA. The very thing that led me to this point I was volunteering my services for and it was then that I decided to share my story.
And the rest as they say in the classics "is history"
Tuesday, February 2, 2010
A walk down memory lane....
“To get up each morning with the resolve to be happy... is to set our own conditions to the events of each day. To do this is to condition circumstances instead of being conditioned by them.” Written by a Cancer Survivor
Walk with me as I share a chronological account of medical facts down memory lane..
With every change of season, I had the usual sinus sniffles, sneezes and hayfever. Then came recurrent ear and sinus infections. So what right? 60% of Cape Town's population suffer from these common ailments. But to link these to cancer? A term which meant very little to me. A term used for "other people" people who get sick, not healthy young people like me.
Then I was a mother of two girls aged 10 and 6 and pregnant with another daughter. My pregnancy was easy and without any complications except for these really bad recurrent sinus and ear infections. Sleeping at night was impossible as any position I chose to sleep created more pain, sinus pain or so I thought.
Then one night, I had a severe attack, a headache so bad that my worst migraine experience paled in comparison. I think then I knew somehow that there was something more to this.
I had a brilliant ENT who insisted that I have an MRI after the pregnancy, to look more closer at my sinus infection problem. Very reluctantly I agreed to have the MRI, two weeks after the birth of my daughter.
February 13th 2008 - I have an MRI scan.
February 14th 2008 - My ENT calls and asks to see both me and my husband. What a valentines day present!
February 15th 2008 - we are given the news of a growth or tumour. My ENT was as shocked as we were. This is just a growth right? People get them all the time.
February 23rd 2008 - I am booked for a biopsy. I am given a general aneasthetic and a tube is inserted through my nose to get a a sample, a specimen for further testing. I am home same day and I am groggy for the next two days, with constant nose bleeds.
February 27th 2008 - 5:30pm - I receive the news of my malignant tumour. So thats like cancer right.
February 28th 2008 - I see a professor for further prognosis
March 2 - I see an oncologist - I am told I have a rare and incurable tumour. The prognosis is really poor and I have to wait for specialists to look at what can be done.
March 10 - A team of Dr's decide on Neutron Radiation
April to July - I have radiation
August - An MRI shows that the tumour has shrunk
January 2009 An MRI shows significant growth. I am told there is nothing more that they can do. That this is it. They give up medically!
May 2009 - I ask for agressive chemotherapy even though there is a 5% chance of any change
April - July 2009 - I undergo aggressive chemo therapy
September 2009 - An MRI shows no change
October 2009 - Brain Surgery
December 2009 - An MRI shows Some reduction
January 2010 - still it grows
February 2010 - Tumours on my lungs
And yet I stand strong, resolved in acceptance but armed in war the war against cancer.
Walk with me as I share a chronological account of medical facts down memory lane..
With every change of season, I had the usual sinus sniffles, sneezes and hayfever. Then came recurrent ear and sinus infections. So what right? 60% of Cape Town's population suffer from these common ailments. But to link these to cancer? A term which meant very little to me. A term used for "other people" people who get sick, not healthy young people like me.
Then I was a mother of two girls aged 10 and 6 and pregnant with another daughter. My pregnancy was easy and without any complications except for these really bad recurrent sinus and ear infections. Sleeping at night was impossible as any position I chose to sleep created more pain, sinus pain or so I thought.
Then one night, I had a severe attack, a headache so bad that my worst migraine experience paled in comparison. I think then I knew somehow that there was something more to this.
I had a brilliant ENT who insisted that I have an MRI after the pregnancy, to look more closer at my sinus infection problem. Very reluctantly I agreed to have the MRI, two weeks after the birth of my daughter.
February 13th 2008 - I have an MRI scan.
February 14th 2008 - My ENT calls and asks to see both me and my husband. What a valentines day present!
February 15th 2008 - we are given the news of a growth or tumour. My ENT was as shocked as we were. This is just a growth right? People get them all the time.
February 23rd 2008 - I am booked for a biopsy. I am given a general aneasthetic and a tube is inserted through my nose to get a a sample, a specimen for further testing. I am home same day and I am groggy for the next two days, with constant nose bleeds.
February 27th 2008 - 5:30pm - I receive the news of my malignant tumour. So thats like cancer right.
February 28th 2008 - I see a professor for further prognosis
March 2 - I see an oncologist - I am told I have a rare and incurable tumour. The prognosis is really poor and I have to wait for specialists to look at what can be done.
March 10 - A team of Dr's decide on Neutron Radiation
April to July - I have radiation
August - An MRI shows that the tumour has shrunk
January 2009 An MRI shows significant growth. I am told there is nothing more that they can do. That this is it. They give up medically!
May 2009 - I ask for agressive chemotherapy even though there is a 5% chance of any change
April - July 2009 - I undergo aggressive chemo therapy
September 2009 - An MRI shows no change
October 2009 - Brain Surgery
December 2009 - An MRI shows Some reduction
January 2010 - still it grows
February 2010 - Tumours on my lungs
And yet I stand strong, resolved in acceptance but armed in war the war against cancer.
Time
Dr's say my time is limited. I have a rare an incurable disease one they know very little about. All attempts at curing it has proved futile. And now they say we wait. There is nothing further we can do.
I draw the curtains and I let the darkness surround me enveloping me, curling up under a warm duvet for even though it is summer outside, it is winter in here. And even the feathers of the duvet cant provide warmth or comfort from the cold.
I try to cry but my tearducts wont cooperate. I feel like the rain of a winter that has not yet come is soaking my clothes, drenching my face, drowning my soul.
Courage, hope, positivity? what is that? it sounds like a cliche from a book someone wrote who has never been challenged, not like this.
I have lost my health and am slowly loosing my hope. For what is hope this word we seek when the darkness envelopes us. Is it that bit of sun streaming through the slits of the blinds, is it that part of our soul that wont let us crawl further under the duvet, or does this word hope paralyze us.
Does the thought that it all may not be so bad, not conjure up images that it could be okay. Does that thought not strike more fear than the acceptance that it is really so bad. Does that thought not make one then understand the meaning of hope and not be so paralyzed by it?
And like the tide at sea my Imaan begins to ebb and flow between the belief that it may get better to the acceptance that it may not. A friend once told me "we only have as long as we are allowed" So no sooner, so no later will my time be than what has been allowed for me.
But yet I remain enveloped by the darkness not wanting the sun to stream in. Not yet...
I draw the curtains and I let the darkness surround me enveloping me, curling up under a warm duvet for even though it is summer outside, it is winter in here. And even the feathers of the duvet cant provide warmth or comfort from the cold.
I try to cry but my tearducts wont cooperate. I feel like the rain of a winter that has not yet come is soaking my clothes, drenching my face, drowning my soul.
Courage, hope, positivity? what is that? it sounds like a cliche from a book someone wrote who has never been challenged, not like this.
I have lost my health and am slowly loosing my hope. For what is hope this word we seek when the darkness envelopes us. Is it that bit of sun streaming through the slits of the blinds, is it that part of our soul that wont let us crawl further under the duvet, or does this word hope paralyze us.
Does the thought that it all may not be so bad, not conjure up images that it could be okay. Does that thought not strike more fear than the acceptance that it is really so bad. Does that thought not make one then understand the meaning of hope and not be so paralyzed by it?
And like the tide at sea my Imaan begins to ebb and flow between the belief that it may get better to the acceptance that it may not. A friend once told me "we only have as long as we are allowed" So no sooner, so no later will my time be than what has been allowed for me.
But yet I remain enveloped by the darkness not wanting the sun to stream in. Not yet...
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