Monday, November 1, 2010
Hospital Chronicles
like being at a comedy show, but this time I had front row seats.
You have the fellow patients, being in an oncology general ward, the nurses treat you with their special "death voices" meaning extra sympathy and it is presumed that you are incapable of doing anything besides testing how many times your bell can ring in one minute.
My legs were completely lame, they lost all ability to move or walk and yet I struggled against advice to keep them still and the use of toilet pans, as a trip to the bathroom would involve a mobile toilet and an additional nurse.
so I struggled against the odds, determine to make my own way to the bathroom and secretly wiggled my feet vigorously to circulate the blood in my legs. After a few days I was able to move my left knee and with effort my left leg.
I remember waiting until the evening when nurses were not around to drag myself out of bed, pulling my right leg with me to the bathroom. Me not being able to walk was something I could not make peace with not yet. For I have made peace with many things over the last two and half years, but this I was not ready for yet.
Upon the discovery of my eight year old that I could not walk she matter of factly told me "not to worry we have a wheelchair, its fine" and somehow in almost an instance I knew I would be fine, no matter what I was to deal with
The nurses aided my slow walk to the toilet with the greatest of patience, I guess it was better than trying to convince stubborn me to use a more convenient way. Eventually walking became easier with each passing day as my pain decreased and in no time I was walking comfortably.
The hair conscious
I lay across from a patient who felt that her hair was of crucial importance and every alternate day her sister would blow dry her hair and then flat iron it. I use to sit and watch trying to hide my amusement. I completed understood her need to look good, I just wasn't sure how a straight hairdo and a hospital gown matched and her lack of regard for silence in the ward raised a few eyebrows.
The angry one
The patient next to me was a fellow cancer survivor and there was not anyone in the ward who dared challenge her. Even I was the victim of her wrath playing on my blackberry. I was very impolitely told that us cancer patients had to rest and that nurses were there to help us. We were not there to be busy.
I made it clear that we were not from the same cancer planet if ever there was such one, as the one I was from still allowed you to be normal. meaning I could still play on my blackberry and have visits from friends and family and laugh with nurses about things that did not make sense at all. Ofcourse I got the you must have something wrong with you look. Turns out I had alot wrong with me, I may have a brain tumour which was busy mestastasing in my body, but I also had so much right with me, my sense of positivity, hope and faith was mestastasing even faster.
Next thing I knew I was being pushed into a private ward, my own bathroom, own tv, felt almost like a hotel, except for the food which will be a blog on its own:)
So there I spent the next two nights until I was scheduled for another MRI, a brain and thoracic one this time
New Experiences
Hospitilisation, A craniotomy and Radiation has dominated the last two months. I will attempt to recount the days and nights of which this journey was made up of.
Wednesday, August 25, 2010
Finding my way back
It is recovery from my recent hospitalisation which brings me back to the screens of my blogging again. This morning I read something inspirational.
I spent days after coming home from a all too lengthy hospital stay, in bed. I was not able to stand unaided and without a visit to the floor and I was no further than my bathroom, a mere couple of steps from my bedroom. I had not eaten anything besides yogisip and a couple of spoons of soup, lovingly fed by my husband. I had not felt the sun on my face or felt the chill on my skin which everyone had told me about.
I realised that 10 days had gone by and that it was almost the middle of a ramadaan that I had not had the opportunity to experience. I thought about the many things that I had missed out on and that I was continuing to. Not for a lack of trying as my every attempt from my mind to leave the confines of my bed was met with every attempt from my body telling me that I had to stay and recover.
That I discovered that I had the start of what was bedsores, something which my mind had conjured up to be something that I cant verbalise when in fact all it was was redness from laying in bed too long.
So I lay in bed my mind racing, reflecting and contemplating my fate when I read an email from someone I had never met telling me that she found inspiration in my blog and I thought well maybe I could do with some of that. So I read my own blog and then the blog of another survivor and I felt an inexplicable sense of enlightenment to the fact that I have been through much worse that in fact It would get better. So I made my way struggling with every step and found that my body had healed a little and so with every step my mind was healing as well.
Then my daughter who is 8 came home from school and with her usual enthusiasm told me about Ramadaan and I realised that I had not missed it, that it was still here all around me and that through her eyes I was seeing it and through my heart I was feeling it. That although I was unable to fast and partake in the activities around that, I was with my family at every suhoor as they were with me in hospital. That we never really leave the ones we love its just a matter of proximity.
That in experiencing the start of bedsores, I was healing that in my mind contemplating my fate from being told " you are incurable" one to many times that I was finding a way back again. That every day I was in bed, I was surviving another. That Ramadaan was about sacrifice and peace and somewhere in between, drips and feeling like I had lost all sanity, I was sacrificing more than I knew and I had found such peace. That although today I was contemplating my fate, I was again accepting it.
So I managed my way outside and soaked in the last few rays the sun had to offer and I let the chill of the air surround me but not envelope me. As I was warmed by the new realisations filled with hope and opportunities which presented itself, clearer and louder with every thought. And finding my way back was a beautiful journey on its own.
Saturday, May 22, 2010
Help and Support groups
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...
Wednesday, May 19, 2010
dealing with changes
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.
Monday, May 17, 2010
eyes wide open
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.
Thursday, May 13, 2010
Addressing Stigma's
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....
Monday, May 10, 2010
A chat to some med Students
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
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
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
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....
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
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...
Monday, January 25, 2010
My Journey
My Journey through cancer
Outside it was one of those perfect Cape Town, Summer days, peering through the soft stained wooden blinds of my room I could see Table Mountain uncovered by cloud. I longed to leave the confines and heat of my room, but felt imprisoned, waiting on news that I knew was bound to change my life forever.
“No calamity befalls, but with the leave (ie decision and Qadar of Allah’ (Qura’an 64:11)
My thoughts were interrupted by my two week old baby needing to be nurtured. I looked down at her, and felt so blessed alghamdulillah that even though through a difficult pregnancy this little angel, delicate and graceful was born. I knew then whatever it was that I was meant to face, that this little angel was sent by my Creator, and I took it as a sign to be strong.
I paced the passageway countless times trying desperately to absorb the news given to me from the other end of the line. News I had feared, but the reality of which had never dawned upon me. CANCER saying it out loud sounded like some foreign disease, one that I had only seen in movies made by celebrities whose fake display of the realities I was about to face paled in comparison.
Kneeling on a welcoming yet cold passage floor I lifted my hands above my head in supplication that I find the strength to convey the news of my incurable malignant brain tumor to my beloved husband, children and family. I felt the back of my hand wiping my tearless face almost in automation but even my hand felt the numbness and the disbelief my expression held.
“ O, you who believe! Seek help in patience and the Prayer” (Qur’an 2:153)
My parents who instilled a consciousness of Allah SWT in me from a very young age, re-confirmed to me that everything comes from Allah and that I should be strong have patience and persevere. Conveying the news to my spouse, children and siblings and listening to them reveal the depths of their own fears was the hardest part. Fears shared by me. But they stood by me firm and unwavering in their continuous love and support.
Our family shares a strong bond and this news strengthened those bonds. It pulled and stretched each rope that held us together that we would at times be holding on only to the fibers which remained.
The weeks ahead was a myriad of Oncologist meetings, tests and planning for treatment I was to undergo. And like a tamed deer I was to lay encaged by high tech machines which was to bring about relief. So the weeks that followed become months and I become still and robotic drifting from treatment to treatment devoid of emotion.
Then one night in a defining moment we made our niyah for hajj, my journey not only to the holy lands but my souls journey to Allah. For somewhere in between the treatments I had lost a nearness to him in my robotic quest for a medical cure, I had lost the conviction I had that HE was the only cure. So my spiritual path meandered its way not only to the Ka’bah but to Allah and my complete submission to HIM.
I completed a walking Hajj alghamdu-lillhah proudly carrying the flag, the flag to me symbolizing not only fighting cancer but fighting for and upholding my spirituality, for it is that which gave me physical strength. As I write this nostalgia sets in thinking of the holy lands and all the beauty and bounties it has to offer and my heart yearns to re-visit it again insha-Allah.
I was told that if my duas are not answered in this world that something better awaits me in the hereafter and that those who are tested have been chosen to be close to Allah SWT and to exercise their patience which Allah has granted and that after every difficulty comes ease.
“Verily, with hardship, there is relief” (Qur’an 94:6)
My conviction in this was tested in the ensuing months of more treatments of a harsher kind. Treatments which humbled me to the core of my being. I lost not only all my hair but all of my vanity. And to rid oneself of one’s vanity is to be humbled like a tree in winter stripped of its leaves, exposed to the elements that the wind carries but never to be stronger and more grounded.
I was grounded and my roots, spread deep beneath the soil of Imaan and Taqwah and it strengthened me and I survived radiation, chemotherapy as well as brain surgery and still I stand exposed to the wind but stronger.
Cancer this word that I had feared whenever in its encounter, became my gift and it became my key unlocking a new world of opportunities I would not have had the fortune to experience.
It opened up my eyes closed to a community that needs assistance. Eyes closed to the gratitude we owe for every limb, muscle and movement we are so effortlessly able to use without a thought that every second only Allah SWT makes this possible. Eyes closed to those who lives amongst us, in our very midst that suffers perils far worse than physical illness, perils of the heart, perils of the lack of God consciousness.
“and if you would count the graces of Allah, never could you be able to count them”
(Qur’an 31:20)
Through this gift of Cancer I am able to sacrifice a job once loved for I know that I am destined for greater more meaningful work, work to help shape a path of inspiration and of hope and to provide assistance to those in need and ultimately walk my path back to Allah.
On this perfect summers day, I sit and reflect in complete submission and acceptance of Allah’s will and decree and I have no fear for tomorrow and what it holds as I know it has been ordained long ago for the ink is dry and the pages have been written. And I am no longer imprisoned by fear but free in enlightenment.
“verily from Allah we come and to him we must return”
Published in Sisters Magazine Spring 2010 issue