Cancer Alliance Stigma Survey

Cancer stigma is a great problem in South Africa, it touches all groups, ages and genders and impacts cancer patients daily.

With our current survey we aim to gain more information and insight into the role of cancer stigma in our communities.

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Dan Shapiro | Brain Cancer

1991 was most certainly the best year of my life, attached with it however comes enormous irony. In that year I repeated my Matric since I devoted my initial Matric year to one subject, Computer Science.As it happened, during my Computer Science Final Exam in 1991, I experience a somewhat extreme version of a Migraine...

THE LIFE & TIMES OF A CANCER SURVIVOR

1991 was most certainly the best year of my life, attached with it however comes enormous irony. In that year I repeated my Matric since I devoted my initial Matric year to one subject, Computer Science.

As it happened, during my Computer Science Final Exam in 1991, I experience a somewhat extreme version of a Migraine. I without hesitation realized that this was no ordinary run of the mill migraine and subsequently consulted my GP who in turn sent me for a CAT scan. It was at this point that I’d learnt that I had a brain tumour. My mom in fact didn’t want me to be told that it was malignant and thought I could just undergo a standard operation after which life would continue as normal. At least as normal as life could possibly be since my dad was diagnosed with Cancer of the Colon a couple of weeks earlier in Oct. 1991.

I was unaffected when I was eventually told that I had a malignant brain tumour that had to be operated upon, since 1991 had been such a phenomenal year! At the same time, we didn’t know the severity of my dad’s cancer. As it happened I had to have 2 operations. The first operation comprised of an implant of a shunt that still extends from my brain to my stomach that has to be maintained for the rest of my life. Literally every 5 yrs to date since my diagnosys, I have had problems with my shunt, either a couple of centimeters or the whole shunt has had to be replaced since it had gone awry. According to the records, my shunt operations have recurred in 1997 and 2002. Being the year that it is, I am holding my breath…

Since my Neurosurgeon was unable to remove the entire tumour since it was so deeply implanted in my brain, I had to undergo a battery of radiation treatment that has resulted in permanent hair loss to my temples and somewhat thinned out version of the bush of hair that I’d always taken for granted. I am now forced to cover my head with a hat or beanie whenever there is even a slight breeze or drop in temperature since my thermoregulation in my brain has been permanently damaged!

Part of my prognosys was one of intellectual retardation and since my intelligence bars me from defining that, I can only account for it by way of a seriously short-term memory deficit that has stifled my development to date socially, academically and professionally. Although I battled on with my studies for ten years post matric and post diagnosys, it all proved fruitless as I had to drop my standards academically as the years progressed. I started at UCT, followed by various colleges and Animation schools. Computer Animation has been my passion since I discovered it in 1993 when I phoned a friend in LA and asked him what role computers played in the film industry. It was at this point that my future was told! At least in fantasy… I began a scrap book of news clippings and computer graphics that wowed me! I can recall gallanting through the street of London from 1 college / university to the next marveling at the stupendous animations young 20 something year olds were creating…Although I knew I was unable to pursue any of the truly outrageous Degrees that the universities had to offer, I nevertheless collected cart loads of magazines, student portfolios, course material, show-reels and what have you that sent my ego spiralling!!! To this day, I still page through my “bible” – aka. scrapbook from time to time and hold it close to my heart with the thought that one day I CAN proudly call myself a Computer Animator!…………….

During the year that followed in 1992, the visits to the hospital for either radiation or chemotherapy treatment for both my dad and I placed an enormous strain on my mom especially while as hard as I fought it, the depression of it all engulfed me. I can however recall being the life of the Cancer Unit and the clinic initially, given my enthusiasm and sincere optimism that both my dad and I would recover with a clean bill of health!

In the latter part of 1992, I was given the green light since the radiation proved successful and that I would live to be an old man not however a grandfather since the radiation not only left me with a quirky hairstyle given my bald patches on the sides of my head but also left me sterile.

My dad was however not as fortunate since a cure could not be found. To this day, I have never understood why he had to endure such a terribly heart rendering and excruciatingly painful journey since he was such a prominent member of our community. His generosity, selfless nature and service to the community as a whole were immeasurable and were recognised by an array of plaques that are mounted in his honour across our community.

Although this account of my dad and l’s experience with Cancer was recorded in 2007, I’d forgotten to publish it on PLWC’s website as asked to by Linda Greef repeatedly. Just as well though, simply because it was incomplete! I have as it happened recently discovered the root and related symptoms of my diagnosis. On 29 July 2009, I attended a Cancer Support Group at the CANSA association in Mowbray, Cape Town where I met a young gentleman by the name of Gerhard who in turn had Cancer of the Brain as a teenager! He informed me about the functionality of the Pineal Region of the Brain, where my tumour had found its home. It is accountable for the body’s levels of Depression as well as our ability to retain the logic of sequencing, two completely unrelated functions! It actually says a whole lot about why my life has taken the road I have travelled since I can recall feeling the symptoms of depression back in 1982, when I was just 9 years old and in standard 2(grade 4). At the same time, the reason why I struggled to retain the logic of the Windows environment on my PC is related to my difficulty with sequencing! I’d met with a Professor at the University of Jerusalem (1994) and with a multitude of Oncologists here in SA to date. None of whom were able to enlighten me in such a life telling regard since it accounts for my struggles to study all of those years! At the same time, it also tells me why my tumour became active in 1991 since I can say with the utmost confidence that it was the best year of my life when I’d broken away from my high school which served as the home of my depression, to repeat my matric year at a college! My feeling is that my overwhelmingly, over the moon, so completely enthusiastic and motivation to move ahead in life with confidence and passion put too much pressure on my Brain Tumour that it became active after all of those years of being dormant! I guess you could say, it was a self discovery, a road I had to travel alone as enlightening as it has been, I have found peace in knowing why I am who I am today!

And so the life of a Cancer survivor continues without a career but left with a deep seated passion that heightens my inspiration and motivates me to trudge through the unexplained setbacks of life as we know it….

With the Deepest Sincerity…

Dan Shapiro

AFTER THOUGHT:

Tribute has to be paid to the Cancer Association since they have and continue to give me the most beautiful experience ever in the form of the annual SHAVATHON! It is truly the most heart rendering and the most enlivening event of my calendar and without any reservation, takes the trophy of selfless giving that unceasingly continues to delve right to the core of my heart, my very being! Each year I race back and forth between the V&A waterfront and Nedbank Cavendish where the SHAVATHON is held and always shave some heads and show my appreciation in what has become a very emotional experience in ways completely unfamiliar, unexpected and hugely rewarding. Words cannot express the joy with which I was honoured to cut a beautiful woman’s long and especially beautiful pony tail that was as long as the length of her back! A truly earth moving experience! One I will cherish forever… I don’t think anybody could and will ever realise the depth of my appreciation of such sensitivity and selfless act of kindness! The emotions that I experienced were so unexpected since it was so unlike me to lose control and couldn’t help but burst into tears of joy, sadness, gratitude and appreciation!

I think I can put the whole controversy surrounding the notion that using Cell phones can cause Cancer since last year in 2009, I had dared to use one on very rare occasions only to be confronted by a relapse of my Cancer once again. I was given hugely serious warnings that I dare not put a Cell phone next to my temple ever again otherwise it could be fatal…Nail in the coffin!!!

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