KB.

Born in 1968 in beautiful Victoria, BC, it wasn’t long before it was noticed that something was wrong with me.  Before age two I would drag my foot and my balance was off.  They treated me for an anxious stomach and when that didn’t help, they treated my ears.  At the age of 4 my speech was slurred and at times I looked like a staggering drunk.  It was 1975 when I was in the hospital for weeks being scrutinized.  I underwent surgery to remove a brain-stem astrocytoma and that was followed by six weeks of extensive radiation to the back of my head.  The facial nerve was damaged leaving a facial bells-palsy and I was left with a left-sided weakness.  There wasn’t any follow-up and being very determined I created my own physiotherapy.  Later taking piano lessons and swimming lessons was the best thing for me; even later in life, for dexterity and hand and eye coordination.  There have always been physical problems, and walls to climb, but I was a fighter and worked hard.  My self-esteem however was very low as I was constantly teased and friendless.  I graduated with honors and went to college to become a legal secretary.  I worked for a number years until the late ‘90s when problems escalated.

The Cancer Agency was in contact with my mother until I reached 20 and then they left me to fend for myself.  For it was in my early 20s that my physical problems intensified to the point where I could no longer live independently and take care of myself.  So there I was left without the much needed compassion or understanding of what was happening to my body.  There were no answers just guessing games and physical torture.  My arms were taxed with pain that was stemming from my neck and I lost the use of my hands.  After many diagnosis guesses they named it a repetitive strain injury.  Not satisfied and not one to give up, I continued to fight for answers and relief.  I finally found a physiotherapist who somewhat understood and I regained some strength; gradually the pain lessened.  I was adamant that my weakness, chronic pain, fatigue, and numerous growing ailments were due to the childhood surgery and more so the extensive radiation given to the back of my head.  With declining health, lack of energy, and chronic pain, I had to make the decision to quit my job.  My mother has been a huge support for me in more ways than one.  Many times I’ve scraped the bottom as in desperation I’ve looked for answers, compassion, and respect.

It’s been over twenty years now that I’ve been searching for help and struggling with daily life.  Over the last two years health problems have increased and is too much to bear at times.  Without any acknowledgment or help I have been stressed out and pulled down emotionally ready to just give up.  Since joining PCSSBC I have learned of numerous miserable ailments other survivors face.  Here we flounder so desperately needing acknowledgment that these are late effects from the treatment we received from childhood cancer.  It is essential that the truth of late effects gets out to the community and that the ministry of health comes to the front forthwith with recognition and full support.

It was through my own desperate searching that I found the connection to Dr. Goddard, Radiation Oncologist, and saw her in Vancouver, BC.  She set up numerous medical tests and I was reassured that I’m not crazy and that yes most if not all of my ailments are late effects from being over-radiated as a child.  Even though I still have to live with numerous debilitation and pain it has brought comfort and even peace knowing that someone truly understands and cares.

Looking at me, you might not know that I have so much to deal with.  Being a positive person I try to be cheerful and encouraging around others thus I don’t share my sorrows or hang my head down in public.  The mass, the whole slew of everything, makes each day very long and difficult.  I have always been a giving person yet it is getting harder to go out and shine, smile, and share.  Socializing has become a strain especially in groups.  Some days I find myself gasping for breath.  Despite my efforts some days I am so lethargic I can’t do anything; I can’t keep my eyes open and have to just rest.  I struggle with feeling trapped in a failing body.  I have had to learn to let go of so much and not fight against my body, lack of life, for that just causes more stress.  There is a battle of the mind though especially with the unknown.  There are times when I just have to allow myself to feel my emotions and sit down and cry.  Doing anything and enjoying life has become an extreme effort.  Staying positive can be a fight also but I find that counting my blessings and having an attitude of gratitude sure helps.

– KB.