relearning

I sit on the sofa and watch the rain outside longing to trample in the puddles and shake the water of winter off my coat again. I tell myself that soon I will be strong enough that I must just persevere a little longer. That this time the craniotomy tooks its toll. All the side effects the dr's thought i would get I got.

I read something inspiring and it goes" forget about all the reasons why something maynot work. You only need to find one good reason why it will" its funny how when you have to relearn everything that you find out all the things you have been doing wrong or taking for granted! that your whole life you have been living on autopilot and now suddenly everything could not be more clearer!

you discover how many muscles you use to walk, sit, drive, talk and eat. How hard it is to smile. the simplest thing in the world you may think but yet the most challenging.

so like a child you start to focus on the things that you can do and you keep re-assuring yourself that you have come a long way.

then someone comes along and tells you all the reasons you should give up, and you start thinking well maybe I am wasting my time. That voice inside just wont let you quit it says come'on one more step when all you want to do is give up.

So you persevere a little longer and the results are great! maybe you cant yet doeverything but most things are good enough. So what if your parking skills need working... the greater population wont notice anyway or care as much as you think:)

Humour

When I was first diagnosed I felt almost like a celebrity. The flowers, fruit, books, sms's and so many family and friends coming around to share their sympathy, others their hope and some their support.

Its almost as if you died somehow when people come and say their goodbyes and make it their duty to see you, as if they are clearing the conscience. Almost ticking you off their to do list. I never thought I would be on someone's to do list so I really do feel rather flattered.

People never know what to say, so they say all those things that they think someone in my condition would want to hear. So there are no jokes, silly talk and inspiration in any form, has completely evaded them. I am left with the sympathy and the " you are going to die look"

Somehow I began my comicall part of this journey when even I thought I had in fact died. I was extremely ill and there were lots of people at my bedside. I woke up in a daze from all the medication and in fact asked loudly. " Have I died?" and indeed the reaction was one of dismay and sadness. So began my journey into the humour of a life with cancer.

Let me say at the outset that this in not mocking of the very serious illness but just helping myself including everyone else cope with it just a little better. For at times humour is the only thing that you have, when all positivity and sense of hope is lost.

So whilst I travel and I discover the humour and the comedy in the way I and others deal with my illness and all that it affects.

My favourite one" If you are too open minded, your brains will fall out"

blogging

An enquiry today led me back to my screen. For it has been a long time since I have blogged or rather felt some inspiration to. Yet here I sit behind the screens of my computer and share me journey with all those who care to listen.

I am to educate as I blog, as not much is said about cancer it has become a sentence all on its own. Life is challenging already for most if not all of us. My plate is just more full than most. When I am done dealing with the life stuff, I have the cancer stuff to deal with.

So I put cancer in a little box which I always carry around with me, and I let it out when I want but I seldom let it define me. Rather i have defined it and I redefine it as the days pass and as it requires more attention.

So I am challenged and I step out removing my shackles but never forgetting them as they are there I believe to always keep me grounded.

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...