Cancer is not a dirty word
1980 year 8
It was the winter of 1980 which means hockey season. I loved to play sport in summer it was tennis, winter was hockey. I would swim all year round and also did calisthenics and ballroom dancing.
I was very active and loved anything energetic..
One morning when I was getting ready for before school hockey training my leg started aching as I walked to school. The pain went away as my body warmed up with training.
But alas the pain returned as the temperature dropped that evening but nothing a panadol couldnt fix. After a few days of continuing pain my mother took me to the doctor. His diagnosis was that I was suffering muscle strain from all the sport and dancing I was doing prescribing me pain killers and telling me to take it easy for a while no training!
I was very active and loved anything energetic..
One morning when I was getting ready for before school hockey training my leg started aching as I walked to school. The pain went away as my body warmed up with training.
But alas the pain returned as the temperature dropped that evening but nothing a panadol couldnt fix. After a few days of continuing pain my mother took me to the doctor. His diagnosis was that I was suffering muscle strain from all the sport and dancing I was doing prescribing me pain killers and telling me to take it easy for a while no training!
You have no idea how hard it was to not play any sport no dancing no running just sitting on my butt twiddling my thumbs and waiting for my leg to get better. I took my painkillers every time I was supposed to but soon they didnt seem to work anymore and I started taking panadol with them.
Losing my longtime friend
One night we got a phonecall from a friend telling us my horse Sonny had gone down and was laying on the ground in a ditch. Sonny had been a part of my family since my mother bought him when I was 2 and so was he.
We arrived at the paddock in pouring rain and pitch black with torches in hand we walked out to find him. We tried to get him to his feet but he struggled and groaned with pain his breathing was labored and he was in desperate need of a vet.
If we were to have any chance of saving him we had to get him out of the waterfilled ditch. It was not as easy as it sounded I was cold and wet and in immense pain but I was not about to tell my mother how much pain I was in. My friend needed me.Using a lot of elbow grease and pure determination we managed to roll him over a couple of times up the hill and propped him up with haybales.
The vet arrived and after a basic exam said he could feel a mass in or near his stomach and would need to open him up to investigate. With Sonny sedated the vet made a small incision in his abdomen and the news was not good. My dear and loyal friend had a cancerous growth the size of a football on his stomache. He was put to sleep there and then 2 days before my 14th birthday on August the 1st the day of his 14th birthday.
We arrived at the paddock in pouring rain and pitch black with torches in hand we walked out to find him. We tried to get him to his feet but he struggled and groaned with pain his breathing was labored and he was in desperate need of a vet.
If we were to have any chance of saving him we had to get him out of the waterfilled ditch. It was not as easy as it sounded I was cold and wet and in immense pain but I was not about to tell my mother how much pain I was in. My friend needed me.Using a lot of elbow grease and pure determination we managed to roll him over a couple of times up the hill and propped him up with haybales.
The vet arrived and after a basic exam said he could feel a mass in or near his stomach and would need to open him up to investigate. With Sonny sedated the vet made a small incision in his abdomen and the news was not good. My dear and loyal friend had a cancerous growth the size of a football on his stomache. He was put to sleep there and then 2 days before my 14th birthday on August the 1st the day of his 14th birthday.
Back to the doctor
My mother took me back to my doctor when my script ran out and he seemed concerned. My leg should have been better by now and he wanted to send me to an orthopedic surgeon for further assessment.
We went to the appointment armed with the referal letter which we were told not to open.
The doctor took the letter but in all his wisdom chose not to open it but to make a diagnosis as he saw it...... I had a large lump now on the inside of my right leg a few inches above the knee...The doctor told me this was residual muscle swelling caused by the strain of all my sporting activity not to mention that I had dislocated my kneecap in a dancing mishap a year earlier.
He decided that it was due to tendons being too loose and allowing too much movement in my knee.
I was then prescribed 4weeks of physiotherapy in an effort to tighten the tendons. I went to all my appointments with the physio for 3.5weeks and walked down the hill after each past the swimming pool and up to Greensborough shopping centre where my sister worked and my mother would pick us up.
It was a normal sort of day I went to school and then off to physio. After treatment I walked down the hill past the swimming pool and was just reaching the bottom of the steps when I suddenly found myself sitting on the ground. I say that because I didnt stumble or trip I took a step and just went down. There was no pain but when I looked at my leg it was massively swollen. I put my hand under my thigh and tried to lift my leg but felt the bone move realising somehow I had broken my leg.
It was september and the pool was not yet open it was getting dark and I was cold and scared.
I dont know how much time had passed when I saw a guy working by the pool. I called out to him and he finally realised I was in trouble and came to my aid.
He then phoned my mother for me who came down and using the pools stretcher they loaded me into the back of my mothers kingswood stationwagon (my orange ambulance).
My mother drove as carefully as she could but after being moved onto the stretcher I suddenly found myself in immense pain and felt every bump on the drive to emergency.
The legs of the stretcher were wedged in the gap of the tailgate and my head was hanging out the back of the vehicle so I got to watch the sky as we made our way to the Austin hospital.
Austin Hospital Emergency Room
Here I was in the emergency department expecting to have a cast slapped on and be on my merryway in a few hrs.....how wrong could I be.
Firstly when you are 14 noone tells you anything but they all walk around with a look of absolute terror on their faces while telling you not to worry.
Then came the strangest thing...I could hear them talking about a shadow on my Xray and then they closed the door so I couldnt hear anymore. When they returned to my cubicle they told me that I would be having a splint fitted and they would be admitting me to the ward...
It had been a lot of hrs and I was tired and in pain and finding it hard to understand why I was being admitted on the small amount of information I was being given but a pethadine injection later I was off to LALA land and information would have to wait til after I slept.
Firstly when you are 14 noone tells you anything but they all walk around with a look of absolute terror on their faces while telling you not to worry.
Then came the strangest thing...I could hear them talking about a shadow on my Xray and then they closed the door so I couldnt hear anymore. When they returned to my cubicle they told me that I would be having a splint fitted and they would be admitting me to the ward...
It had been a lot of hrs and I was tired and in pain and finding it hard to understand why I was being admitted on the small amount of information I was being given but a pethadine injection later I was off to LALA land and information would have to wait til after I slept.
My mother my strength
My mother came to see me the next day and after more xrays and scans of all sorts tells me I would need a biopsy. As you can figure I didnt have any idea what they needed to do a biopsy for but my mother said I needed it so ok.
On the Monday I went into surgery for my biopsy.
Friday came bringing me a visit from my orthopedic surgeon...
He pulled the curtain and sat on a chair by my bed and said something like this.....
"we have the results from your biopsy and you have a tumor it is cancer....we are going to have to take the tumor away and a little bit of your leg has to go with it."
I thought about what he had said... I looked at my leg.....ok so they will be taking the kneecap and a lot of muscle my leg will look mutated but oh well....
THEN MY PARENTS WALKED INTO THE ROOM
Their eyes swollen from crying and I was confused.. so I asked my father...Dad how much of my leg are they gonna take??? His response hit me like a truck "ALL OF IT!!"
With all of 2 days to get my head around the idea on Monday the 6th of October 1980 at 1.30pm I went into surgery to have my right leg removed above the knee....
8" below the hip.
On the Monday I went into surgery for my biopsy.
Friday came bringing me a visit from my orthopedic surgeon...
He pulled the curtain and sat on a chair by my bed and said something like this.....
"we have the results from your biopsy and you have a tumor it is cancer....we are going to have to take the tumor away and a little bit of your leg has to go with it."
I thought about what he had said... I looked at my leg.....ok so they will be taking the kneecap and a lot of muscle my leg will look mutated but oh well....
THEN MY PARENTS WALKED INTO THE ROOM
Their eyes swollen from crying and I was confused.. so I asked my father...Dad how much of my leg are they gonna take??? His response hit me like a truck "ALL OF IT!!"
With all of 2 days to get my head around the idea on Monday the 6th of October 1980 at 1.30pm I went into surgery to have my right leg removed above the knee....
8" below the hip.
waking up
I dont remember the next few days.. I am told that every time they tried to bring me out of sedation I would start screaming before regaining consciousness so they would sedate me and try again the next day. Finally with the pain under control I found time to smile.
The real battle is still coming
After being awake for a few days they finally let me get out of bed and gave me a wheelchair you know what they say about wheelchair races on the third floor are all true...well it was on my third floor :)
A week or so after my surgery I was transferred to the Royal Childrens Hospital in Melbourne to start chemotherapy. The chemotherapy I was to be given was a high dose experimental program.
To explain chemotherapy in terms easy to understand they poison you to within inches of death then give you the antidote. Cancer cells die faster than normal cells so the theory is more cancerous cells will die than normal cells each treatment.
I was started with 6hrs of fluids then via the IV I was given a push of the drug vincristine followed by a bottle of the drug methatrexate. This would run through my body over several hrs.
Soon I was vomiting until there was nothing left but to wretch until my entire body was aching.
Over the next 24hrs I would be given the drug calcium lucavoran and once the drip was removed and I could hold down fluids I would be allowed to go home. I would return to the hopital 3 weeks later for a dose of Adriamyacin. (Lovely stuff looks like raspberry cordial. And they know you have had enough when your heart enlarges) This drug would leave me bedridden and vomiting for several days. The following week they would check my blood and take lung Xrays and make sure I was well enough to be treated again.
losing my hair
During my first visit to the Childrens hospital it was explained to me how the drugs would cause my hair to fall out. They then explained they would have a hairdresser coming to see me who would cut my hair short as it would be easier and they would use my hair to make wigs. They told me they would cut my hair as short as my mothers so you can imagine how upset I was when they were finished. After a while the tears subsided and it was time to try and make light of the situation.
Christmas with no hair
Losing my hair was tough, first it came out in small patches starting at the front, soon I would wake in the morning with a pillow resembling a mohair rug.
Living with no hair was a very trying time. Kids are cruel and I was called a lot of nasty and hurtful things over time. I have to give out some points for originality though for names like Hopalong Cassidy without the horse...and Hopalong Kojak without the chuppachup just to name a couple.
Living with no hair was a very trying time. Kids are cruel and I was called a lot of nasty and hurtful things over time. I have to give out some points for originality though for names like Hopalong Cassidy without the horse...and Hopalong Kojak without the chuppachup just to name a couple.
There are a lot of things that I strain to remember but there are so many more that I wish I could forget. I dont remember going into surgery much, it is like a series of still pictures to me, yet the view of the roof rolling by as I was wheeled into theater is vivid. Masked faces, bright lights and the sound of my racing heart which was almost louder than the teams voices.
I remember wanting to vomit seeing the butterfly needle they use for the anesthetic. It is the same type they use to inject the red drug into the back of my hand. Its funny how small things can bring on extreme reactions. It was many months before I could look at red liquid without dry reaching.
I couldnt go to the fridge in a shop to buy a drink because of my reaction to seeing raspberry soda. Every time we would drive to the hospital I would feel fine until the hospital came into view and I would get a hot flush and overwhelming need to vomit.
Memory is made up of so much more than what you see, what you smell can be an unbelievably powerful tool to invoke memories.
Hospitals have a very distinct smell. There are chemicals they use for different things and each one changes the smell of a room. The smell of the linen on the beds, the pink liquid the staff would use to clean their hands before and after tending to you. The smell released when they open the bag of disposable instruments even the smell of the floor polish they would use every morning.
Over the chemical smells of the sterile environment came the distinct smell of the people caring for us. The doctors, nurses, family and friends even the visitors of other patients. I could smell them coming. Still now when I enter different places the smells around me trigger some very powerful both good and bad memories.
I remember wanting to vomit seeing the butterfly needle they use for the anesthetic. It is the same type they use to inject the red drug into the back of my hand. Its funny how small things can bring on extreme reactions. It was many months before I could look at red liquid without dry reaching.
I couldnt go to the fridge in a shop to buy a drink because of my reaction to seeing raspberry soda. Every time we would drive to the hospital I would feel fine until the hospital came into view and I would get a hot flush and overwhelming need to vomit.
Memory is made up of so much more than what you see, what you smell can be an unbelievably powerful tool to invoke memories.
Hospitals have a very distinct smell. There are chemicals they use for different things and each one changes the smell of a room. The smell of the linen on the beds, the pink liquid the staff would use to clean their hands before and after tending to you. The smell released when they open the bag of disposable instruments even the smell of the floor polish they would use every morning.
Over the chemical smells of the sterile environment came the distinct smell of the people caring for us. The doctors, nurses, family and friends even the visitors of other patients. I could smell them coming. Still now when I enter different places the smells around me trigger some very powerful both good and bad memories.
A hospital life
Some days were good and some days were really bad... I lost my hair, I would get burnt if I was in the sun more than a minute I couldnt eat properly my life was nothing like it had been before.
Then the unthinkable happens....They discovered 8mths into my treatment that there was one spot on each lung visible on my Xrays. I was sent for a CT scan which showed 2 spots on each lung visible on the scans.
I had secondary cancers growing in my lungs despite being on a high dosage chemotherapy the whole time.
The doctors talked about what to do in depth before confronting my parents. They explained how there is a surgery that can be performed and it would involve opening my chest cavity from my back and removing the cancerous growths one side at a time.
They informed them that noone under the age of 18 in Australia had survived a double lung operation of this magnitude.
They continued to say
"what is better the quality of life or the quantity of life take her
home and let her die!"
My Parents were devastated and advised the doctors to come and tell me that...
I remember the doctor trying to explain to me why I should go home and die quietly. As he spoke the whole situation seemed surreal, I was listening to what he was saying but it couldnt be right? Was he telling me to give up? I could not comprehend the thought of giving up I was not ready to die! Finally he stopped and gave me the chance to respond. I was anything short of polite using all sorts of colorful words but WTF the man is telling me to go away and die!!!!
Forgive me for not being too specific but it was 30yrs ago.....
My response was something like this...
"Who the f#@k died and made you god...who gives you the right to say I cant have surgery....who gives you the right to tell me I am not allowed to fight...who gives you the right to say my family must sit and watch me die slowly.... If I go now I have 6weeks tops, if I die on the table it is over in a day...but WHAT IF I DONT DIE...WHAT IF I am the first person under 18 to live...WHAT IF I am going to be that miracle?? Dont I deserve the right to choose????
Well I am here today so guess what....
I was the first...I am the miracle and I was nearly sent home to die.
next would be a whole new type of chemotherapy a whole new attack on the disease and many more months of sickness and suffering...
Then the unthinkable happens....They discovered 8mths into my treatment that there was one spot on each lung visible on my Xrays. I was sent for a CT scan which showed 2 spots on each lung visible on the scans.
I had secondary cancers growing in my lungs despite being on a high dosage chemotherapy the whole time.
The doctors talked about what to do in depth before confronting my parents. They explained how there is a surgery that can be performed and it would involve opening my chest cavity from my back and removing the cancerous growths one side at a time.
They informed them that noone under the age of 18 in Australia had survived a double lung operation of this magnitude.
They continued to say
"what is better the quality of life or the quantity of life take her
home and let her die!"
My Parents were devastated and advised the doctors to come and tell me that...
I remember the doctor trying to explain to me why I should go home and die quietly. As he spoke the whole situation seemed surreal, I was listening to what he was saying but it couldnt be right? Was he telling me to give up? I could not comprehend the thought of giving up I was not ready to die! Finally he stopped and gave me the chance to respond. I was anything short of polite using all sorts of colorful words but WTF the man is telling me to go away and die!!!!
Forgive me for not being too specific but it was 30yrs ago.....
My response was something like this...
"Who the f#@k died and made you god...who gives you the right to say I cant have surgery....who gives you the right to tell me I am not allowed to fight...who gives you the right to say my family must sit and watch me die slowly.... If I go now I have 6weeks tops, if I die on the table it is over in a day...but WHAT IF I DONT DIE...WHAT IF I am the first person under 18 to live...WHAT IF I am going to be that miracle?? Dont I deserve the right to choose????
Well I am here today so guess what....
I was the first...I am the miracle and I was nearly sent home to die.
next would be a whole new type of chemotherapy a whole new attack on the disease and many more months of sickness and suffering...
Before I was allowed to go into surgery for my lung cancer I had to go through a series of training sessions to teach me how to cough properly. I know this sounds a little silly to you all but believe it or not there are right and wrong ways to cough. There are ways to cough from the top or bottom of the lung. This is necessary as after the procedure there will be a buildup of fluid and possibly infection in the lung tissues and I would need to be able to expel the offending material before it drowns me.
As I said I dont remember much about going into theater. I do however remember some of waking up in intensive care. First it hurt to breathe, I was lying flat on my back. My face was itchy so I reached up to scratch with my right hand but it was bandaged to a board with a tube coming out of it.
So I reached up with my left hand and found it was the same thing. I had a drip in each arm. My right arm was into the main vain so they could draw blood as often as needed to get a head start on any infection and the left was into the vein on the inside of my hand feeding me a steady supply of morphene.
Soon my face was not the only thing that was itching and my skin was becoming red and inflamed. I was itching all over and I had nothing to scratch with. It wasnt long before they realised that I had an allergic reaction to morphene and switched me to pethadine and the itching stopped.
I wanted so badly to sit up and the staff kept telling me to wait a little longer, wait a little longer but I really really wanted to sit up. Finally they decided it was ok to sit me up which hurt like hell but I felt better to be up. After a while I asked if I could lay back down again and was shocked to find out they would not let me. Now that I was sitting up all the fluids in my lungs would have moved to the bottom of my lungs and if they lay me down again I would likely drown. It would be more than a year before I could lay flat in a bed.
In order to access my lungs I was laid on my side and they cut in just below the shoulder and opened my chest between two ribs. They then removed the cancer spots and a small amount of surrounding lung tissue and stapled the the area. After removing the two spots that were apparent on the CT scan the surgeon ran his hands over my lungs feeling two more small lumps and removing them as well. After closing they rolled me over and repeated the procedure on the opposite side.
I cant even begin to explain how it felt after surgery. My chest was constricted and heavy and it hurt just to breathe. It would be a lot of weeks before I would understand the impact of the surgery. You dont realise how much you use your ribs until you hurt them. I could not lift myself using my upper body. Every movement that we take for granted meant excruciating pain. I could not use my crutches not only because I couldnt put weight on my arms but I also couldnt lean them against my chest. I spent many months in a wheelchair unable to lift myself.
Now it was time to get me well enough to start poisoning me again
As I said I dont remember much about going into theater. I do however remember some of waking up in intensive care. First it hurt to breathe, I was lying flat on my back. My face was itchy so I reached up to scratch with my right hand but it was bandaged to a board with a tube coming out of it.
So I reached up with my left hand and found it was the same thing. I had a drip in each arm. My right arm was into the main vain so they could draw blood as often as needed to get a head start on any infection and the left was into the vein on the inside of my hand feeding me a steady supply of morphene.
Soon my face was not the only thing that was itching and my skin was becoming red and inflamed. I was itching all over and I had nothing to scratch with. It wasnt long before they realised that I had an allergic reaction to morphene and switched me to pethadine and the itching stopped.
I wanted so badly to sit up and the staff kept telling me to wait a little longer, wait a little longer but I really really wanted to sit up. Finally they decided it was ok to sit me up which hurt like hell but I felt better to be up. After a while I asked if I could lay back down again and was shocked to find out they would not let me. Now that I was sitting up all the fluids in my lungs would have moved to the bottom of my lungs and if they lay me down again I would likely drown. It would be more than a year before I could lay flat in a bed.
In order to access my lungs I was laid on my side and they cut in just below the shoulder and opened my chest between two ribs. They then removed the cancer spots and a small amount of surrounding lung tissue and stapled the the area. After removing the two spots that were apparent on the CT scan the surgeon ran his hands over my lungs feeling two more small lumps and removing them as well. After closing they rolled me over and repeated the procedure on the opposite side.
I cant even begin to explain how it felt after surgery. My chest was constricted and heavy and it hurt just to breathe. It would be a lot of weeks before I would understand the impact of the surgery. You dont realise how much you use your ribs until you hurt them. I could not lift myself using my upper body. Every movement that we take for granted meant excruciating pain. I could not use my crutches not only because I couldnt put weight on my arms but I also couldnt lean them against my chest. I spent many months in a wheelchair unable to lift myself.
Now it was time to get me well enough to start poisoning me again