Hospital Chronicles

There is no place like the hospital. At times it was
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

Its been a long silence again.

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.

Finding my way back

Its been awhile since I last blogged. A combination of being so busy and so sick that neither allowed me coupled with that I seemed to have so much to write about that I eventually ended up leaving it all there just in my thoughts.

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.

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....