Page 10
My daughter, Tayla, is a beautiful, strong and independent child, who is mature for her age yet a sensitive soul behind her tough facade.
She has just turned 16 but was 14 years old when I was diagnosed with Cancer
Being the older of the two children ( Jarrett was 12 at that time), Craig and I assumed that she would have the better understanding and be the one to cope with what we faced as a family.
The problem was, we underestimated just how much she understood and did not give her enough information for her to process and for her to feel secure.
On the night we told the children, Craig sat holding Tayla on the couch.
We told the children that I was very ill and that I had Cancer.
Tayla burst into tears... Craig held her as she cried and we continued to tell them about what to expect so that they would not be frightened or traumatised when they saw what was going to be happening to me.
Craig and I had already had a few days to come to terms with this as well as speak to the psychologist, so we were already in the frame of mind that I was going to survive this.
We assured them that, although it was going to be a difficult road, I was going to be alright.
As I said in a previous blog, neither of them asked "could I die"...so we never discussed the possibility of dying or how serious the Cancer was.
When she stopped crying, I thought we had successfully re-assured them and that they would be fine.
How naive I was!
As the days went by and I showed more signs of the treatment taking effect, Tayla withdrew emotionally until she withheld all affection from me and stopped saying " I LOVE YOU"
She behaved like a nurse and would gladly hold my hair back when I was vomiting or bring me anything I needed.
She took on a practical role and avoided any personal conversation.
I tried to talk to her and ask her about her feelings but she would not go there.
I tried talking to her about my day and she was not interested in hearing about that either.
It broke my heart as I interpreted this behaviour as her being angry with me for being ill, and not being there for her as her mother.
BUT..
I was wrong!... and only much later came to understand that....
As she is highly intelligent, she was not only seeing but hearing everyone talk about how serious it was.
She was frightened and thought I might die, therefore she was distancing herself from me to cope with loosing me.
She thought we had not told her the truth, and she could not bear to ask, so she carried that uncertainty with her and it ate her up emotionally!
We should have been blatantly truthful so that she could have known how hard I was fighting to be with her not think I was lying to her.
In retrospect, we should have said the words
" Even though this is very serious, mom dad and the doctor's are going to do everything possible to make sure that I survive....I am not going to die"
On the day I was told the Cancer was CLEAR, we immediately told the children.
Tayla said the most precious words...
" I LOVE YOU MOM"
Next Blog:
Should you have any questions or comments, please use the tabs at the bottom of each blog page.
Sunday, 29 April 2012
Friday, 27 April 2012
How Craig ( my Husband) Coped with my Cancer
PAGE 9
This blog is so important to share with you as I want to tell you about how my having Cancer affected my family.
My husband, Craig and my two Children, Tayla, my daughter and Jarrett, my son.
My husband was my ROCK!
He faced this disease with such strength and determination and just stepped up to face it HEAD ON!
I remember his words to me just after I was diagnosed
"Babe, we are going to treat this like a bad cold"
He was not making light of the fact that I had Cancer but used that idea to maintain perspective and not allow the fear of loosing me to overwhelm him.
From the start, Craig took total control of everything medical.
He dealt with all the doctors and medication.
Managed all the information that was being thrown at us from every direction , processed and made sense of it which enabled us to make the decisions together that would make the difference between Life or Death.
He was as petrified as I was but hid it from me by being brave and confident.
I actually don't know how he maintained this !
He took me to treatment every morning, holding my hand on the way in and holding me up on the way out.
His employers were very understanding and supportive during this time.
He settled me down at home after all the vomiting every day before going to work and dealing with all that additional stress.
He handled all the bills that were flying in from doctors, specialists and hospitals,
He had my medication on a schedule and knew exactly what had to be taken when and what it was for. If I had any side effects, he discussed this with the doctors immediately.
He had found a woman, Jane, who made home made organic soups. Craig had told Jane that I could not eat solid foods so every few days, Jane would deliver fresh soups and put a beautiful rose on top of the punnet for me.
Small gestures like that meant so much when I was feeling so beaten down,
Today we are all good friends!
Craig would blend my fresh juices for me and sit with me while I struggled to get it down, encouraging me all the way to fight through the pain....
and..
the most incredible gesture of love was....
I had 5 doses of morphine per day and the last dose was due every night at 2a.m.
Craig would prepare the liquid morphine in a syringe each night, set his alarm and get up to walk around to my side of the bed, squirt the dose into my mouth and gently tell me to go back to sleep.
All this while trying to maintain the emotional well being of the children, my mother and himself!
He was under tremendous emotional strain watching me suffer and being so helpless to do anything about it ,
YET...
NOT ONCE, did he show anger or frustration at the situation he found himself in or direct it at me.
I admire him so much for that!
His emotional release was meeting with his friends after work ,at our local pub here in the village, to talk not about himself, but as they all told me afterwards, how
" He used to break down sharing with them how much he loved me, how brave I was and how much it hurt him to watch me suffer."
He was so grateful to all his friends for being there for him!
Craig and I can understand now how an emotional experience like this can tear a marriage apart but with us .....IT WAS THE OPPOSITE!
This has brought us even closer and that was because we talked our way through this with each other.
We were REAL with one another about our feelings and especially our fears.
BUT..
NOT ONCE DID I EVER SAY " I WANT TO DIE" no matter how tough it got.... because I knew that would break his spirit and would hurt him beyond belief.
If we had hidden away from discussing the fear of loosing each other we would have grown apart.
We cried together A LOT!
It was also so important for him to know that ..
I HAD NO INTENTION OF GIVING UP and for me to know .....
THAT HE WAS NOT GIVING UP ON ME!
So together, we just kept on giving each other the strength throughout the whole experience.
We had to face a very difficult issue together, and that was, "the updating of my will."
Under normal circumstances that is not a comfortable issue to deal with because you are facing the possibility of your mortality ...but it was so much more emotional and heart wrenching as this was a REALITY for me.
We both felt so torn emotionally and it I knew it broke his heart putting me though this!.... It was soul destroying acknowledging on paper that I was preparing to DIE when in reality I was fighting so hard to LIVE!
I am so proud to have this man beside me in life, as I know, that no matter what life throws at us.... after surviving Cancer...... we can face it together!
My Next Blog: The Effect on my Children
Please feel free to comment or e-mail me.
This blog is so important to share with you as I want to tell you about how my having Cancer affected my family.
My husband, Craig and my two Children, Tayla, my daughter and Jarrett, my son.
My husband was my ROCK!
He faced this disease with such strength and determination and just stepped up to face it HEAD ON!
I remember his words to me just after I was diagnosed
"Babe, we are going to treat this like a bad cold"
He was not making light of the fact that I had Cancer but used that idea to maintain perspective and not allow the fear of loosing me to overwhelm him.
From the start, Craig took total control of everything medical.
He dealt with all the doctors and medication.
Managed all the information that was being thrown at us from every direction , processed and made sense of it which enabled us to make the decisions together that would make the difference between Life or Death.
He was as petrified as I was but hid it from me by being brave and confident.
I actually don't know how he maintained this !
He took me to treatment every morning, holding my hand on the way in and holding me up on the way out.
His employers were very understanding and supportive during this time.
He settled me down at home after all the vomiting every day before going to work and dealing with all that additional stress.
He handled all the bills that were flying in from doctors, specialists and hospitals,
He had my medication on a schedule and knew exactly what had to be taken when and what it was for. If I had any side effects, he discussed this with the doctors immediately.
He had found a woman, Jane, who made home made organic soups. Craig had told Jane that I could not eat solid foods so every few days, Jane would deliver fresh soups and put a beautiful rose on top of the punnet for me.
Small gestures like that meant so much when I was feeling so beaten down,
Today we are all good friends!
Craig would blend my fresh juices for me and sit with me while I struggled to get it down, encouraging me all the way to fight through the pain....
and..
the most incredible gesture of love was....
I had 5 doses of morphine per day and the last dose was due every night at 2a.m.
Craig would prepare the liquid morphine in a syringe each night, set his alarm and get up to walk around to my side of the bed, squirt the dose into my mouth and gently tell me to go back to sleep.
All this while trying to maintain the emotional well being of the children, my mother and himself!
He was under tremendous emotional strain watching me suffer and being so helpless to do anything about it ,
YET...
NOT ONCE, did he show anger or frustration at the situation he found himself in or direct it at me.
I admire him so much for that!
His emotional release was meeting with his friends after work ,at our local pub here in the village, to talk not about himself, but as they all told me afterwards, how
" He used to break down sharing with them how much he loved me, how brave I was and how much it hurt him to watch me suffer."
He was so grateful to all his friends for being there for him!
Craig and I can understand now how an emotional experience like this can tear a marriage apart but with us .....IT WAS THE OPPOSITE!
This has brought us even closer and that was because we talked our way through this with each other.
We were REAL with one another about our feelings and especially our fears.
BUT..
NOT ONCE DID I EVER SAY " I WANT TO DIE" no matter how tough it got.... because I knew that would break his spirit and would hurt him beyond belief.
If we had hidden away from discussing the fear of loosing each other we would have grown apart.
We cried together A LOT!
It was also so important for him to know that ..
I HAD NO INTENTION OF GIVING UP and for me to know .....
THAT HE WAS NOT GIVING UP ON ME!
So together, we just kept on giving each other the strength throughout the whole experience.
We had to face a very difficult issue together, and that was, "the updating of my will."
Under normal circumstances that is not a comfortable issue to deal with because you are facing the possibility of your mortality ...but it was so much more emotional and heart wrenching as this was a REALITY for me.
We both felt so torn emotionally and it I knew it broke his heart putting me though this!.... It was soul destroying acknowledging on paper that I was preparing to DIE when in reality I was fighting so hard to LIVE!
I am so proud to have this man beside me in life, as I know, that no matter what life throws at us.... after surviving Cancer...... we can face it together!
My Next Blog: The Effect on my Children
Please feel free to comment or e-mail me.
Saturday, 7 April 2012
Coping with Chemo and Radiation Daily
Page 8
My treatment consisted of a combination of Chemo once a week and the highest dose of radiation available on a daily basis (Mon - Fri) for a period of 3 months. I was given week-ends free to recoup.
I was advised that the radiation would cause internal as well as external burning and that after 4 weeks I would loose the ability to speak and eat... Well, it took only 2 weeks for that to become a reality!
My body reacted to the radiation so early in the process so I was put on to a daily routine of two additional injections. These were administered into my stomach in order to counteract the effect of the radiation.
One day, I remember looking down at this swollen mound of flesh, that once was my flat stomach ,and not recognising it as my own body. It was blue, green yellow and purple from the bruising; it was difficult to find a clear patch each day for the next round of injections.
Having Chemo every Tuesday for 2 hours before my daily dose of radiation was not an easy task and this became the worst day of my week.
I received the Chemo intravenously over a period of 2 hours while sitting in a comfy chair in a big room with other cancer patients all receiving their doses too. Cancer patients sit there, lost in their own world of silence in a struggle for their own survival. Chemo drips in their arms and portals in their chests, looking sad and depressed and it takes enormous strength not be affected by it.
I was the youngest in the Chemo room and I found the atmosphere very depressing even though the nurses did their best to keep it cheerful. Apart from the odd comment or conversation there was an element of such sadness and even a cheerful story or joke only changed the energy for a short time.
I could not bring myself to speak to other patients about their treatment or condition. I did not want to compare "war stories" with anyone as I found it difficult enough coping with my own.
I felt that if my cancer at stage 4 was more severe than theirs or if I had of received that pitiful look from anyone...it would have undermined my belief and faith that I could survive this...... so, I did my best not allow myself to be engulfed by this negative energy.
Craig, my husband on the other hand, was amazing, and chatted to everyone about their health or inspired them by talking about food and recipes that he cooks. It really was a wonderful distraction for all of us in the room.
He even baked cheesecakes for the nurses in oncology which they still talk about every time they see us at check up appointments.
After my first day in Chemo I made a decision.!.......
I enjoy dressing well and love fashion, so to help me feel good and keep my mind strong, I decided to dress well, do my hair and put make-up on every day to go to treatment. I did not want to look as though I was dying!
I truly believed that if I did not look sick I would not be sick !
The nurses in the oncology rooms still joke about how good I looked each day and how my handbags always complimented my outfits.
I feel this helped me so much from a psychological point of view........although walking in high heels while vomiting into a bucket does take a bit of practise!
Facing the treatment was daunting so Craig and I decided that the best way to cope with this overwhelming task ahead, was to deal with it.....ONE DAY AT A TIME!
By doing this I experienced a sense of relief when each day was over and marked each day off in my mind like a castaway on an island. I compared days with each other so that I could recognise and acknowledge a good day when I experienced one and that kept me hoping for more.
Eventually I got to that point and to the realisation that I was having more good days than bad and it was the most amazing feeling as I knew I was on the road to recovery.
The Radiation treatment really surprised me and caught me off guard! I expected the Chemo to make me ill but after the first few radiation treatments, and all was still going well, I thought radiation was going to be easy . It seemed so gentle and there were no side effects for at least the first 7 treatments....until.......after a short 2 weeks the external burns started to show on my throat.
My voice disappeared as my voice box was being burnt and I could no longer eat solids.
Swallowing became increasingly painful until it became impossible to even get liquids down without taking painkillers first.
By the end of my treatment my neck was burnt black and peeled from tiny suppurating sores due to the radiation burn.
If that was the external damage, imagine the radiation damage to my throat and organs internally!
I had lost all my taste buds and had no taste at all.
My saliva glands were also damaged and my saliva dried up completely.
The pain was so intense that I was on morphine 5 times a day.
I was losing weight ! I am a slim person and I knew that I could not afford to do that, so my husband Craig, bought me a juicer.
I lived on painkillers to numb my throat and fresh juices daily, in order to maintain my strength and give my body every nutritional advantage to repair and heal.
I knew that nutrition was a key element to my survival as much as believing that I would survive this!
I will discuss nutrition in a later blog.
Radiation made me violently ill and vomiting became a daily routine.
I used to carry a lime green bucket with me each day to radiation as I would get off the table and not even make it to the front doors before the vomiting started for the day!
What really surprised me was when my hair loss was affected by the radiation, not the Chemo.
I was warned that my hair could fall out and I dreaded the day. I have long hair that when left to dry forms soft locks like a gentle perm.
I stood in front of the mirror one day and an entire lock just came away in my hand. I looked at it and burst into tears as I could not imagine myself bald.
I have one ear that stands out further than the other and all I could think of was how am I going to hide my ear, as the tears streamed down my cheeks.
I lost my hair from the back of my head to the nape of my neck as that was the area affected by the radiation treatment ... luckily I could wear the rest of my hair down over the bald section.
My hair grew back beautifully over the next 2 years, with baby soft locks that curled their way down to join the length of the rest of my hair.
Before starting radiation treatment, a wet mask was moulded to the contours of my face and once left to dry, set into a hard casing that mirrored every detail in my face.. This was then fitted onto my face each day and then used to clip me onto the table in order to hold my face in the exact position required.
The markings on the mask indicated where to radiate and where to protect my face in order to minimise the burn damage to facial nerves, tongue, arteries .
At first I felt claustrophobic but soon learnt to calm myself down and "zone out". Imagining all the good the radiation was doing ... not the destruction.
It was an opportunity for me to visualise the cancer healing and take myself to a calm and peaceful place before the vomiting started for the day!
The consequences of radiation after 2 years are that my saliva glands have still not recovered and I drink water constantly during the day and night to keep my mouth moist.
I have also learnt that water does not dissolve food like saliva does and have virtually given up eating pasta's or breads.
My sweet taste bud has also not recovered.
I miss this the most and sometimes get very frustrated....as chocolate tastes like cocoa, cookies taste like flour and marshmallows taste salty.
Foods don't taste like I remember them and I am often disappointed when I have a craving as my brain and my mouth no longer speak the same language
BUT....
I keep reminding myself of what it took to get to here and I am so grateful to have survived this that I find it a small price to pay for the GIFT OF LIFE!
It's hard to believe that my body was poisoned and burnt to that extent and then recovered to look and feel so healthy again.
I marvel at the capability of the human body!
It made me appreciate my body so much and I have such respect for the capacity to heal. I am very conscious of what I put into my body now as I know that my continued survival and ongoing health is directly related to the fuel and nutrition I feed myself.
Next Blog: How Craig ( my husband) dealt with my Cancer
My treatment consisted of a combination of Chemo once a week and the highest dose of radiation available on a daily basis (Mon - Fri) for a period of 3 months. I was given week-ends free to recoup.
I was advised that the radiation would cause internal as well as external burning and that after 4 weeks I would loose the ability to speak and eat... Well, it took only 2 weeks for that to become a reality!
My body reacted to the radiation so early in the process so I was put on to a daily routine of two additional injections. These were administered into my stomach in order to counteract the effect of the radiation.
One day, I remember looking down at this swollen mound of flesh, that once was my flat stomach ,and not recognising it as my own body. It was blue, green yellow and purple from the bruising; it was difficult to find a clear patch each day for the next round of injections.
Having Chemo every Tuesday for 2 hours before my daily dose of radiation was not an easy task and this became the worst day of my week.
I received the Chemo intravenously over a period of 2 hours while sitting in a comfy chair in a big room with other cancer patients all receiving their doses too. Cancer patients sit there, lost in their own world of silence in a struggle for their own survival. Chemo drips in their arms and portals in their chests, looking sad and depressed and it takes enormous strength not be affected by it.
I was the youngest in the Chemo room and I found the atmosphere very depressing even though the nurses did their best to keep it cheerful. Apart from the odd comment or conversation there was an element of such sadness and even a cheerful story or joke only changed the energy for a short time.
I could not bring myself to speak to other patients about their treatment or condition. I did not want to compare "war stories" with anyone as I found it difficult enough coping with my own.
I felt that if my cancer at stage 4 was more severe than theirs or if I had of received that pitiful look from anyone...it would have undermined my belief and faith that I could survive this...... so, I did my best not allow myself to be engulfed by this negative energy.
Craig, my husband on the other hand, was amazing, and chatted to everyone about their health or inspired them by talking about food and recipes that he cooks. It really was a wonderful distraction for all of us in the room.
He even baked cheesecakes for the nurses in oncology which they still talk about every time they see us at check up appointments.
After my first day in Chemo I made a decision.!.......
I enjoy dressing well and love fashion, so to help me feel good and keep my mind strong, I decided to dress well, do my hair and put make-up on every day to go to treatment. I did not want to look as though I was dying!
I truly believed that if I did not look sick I would not be sick !
The nurses in the oncology rooms still joke about how good I looked each day and how my handbags always complimented my outfits.
I feel this helped me so much from a psychological point of view........although walking in high heels while vomiting into a bucket does take a bit of practise!
Facing the treatment was daunting so Craig and I decided that the best way to cope with this overwhelming task ahead, was to deal with it.....ONE DAY AT A TIME!
By doing this I experienced a sense of relief when each day was over and marked each day off in my mind like a castaway on an island. I compared days with each other so that I could recognise and acknowledge a good day when I experienced one and that kept me hoping for more.
Eventually I got to that point and to the realisation that I was having more good days than bad and it was the most amazing feeling as I knew I was on the road to recovery.
The Radiation treatment really surprised me and caught me off guard! I expected the Chemo to make me ill but after the first few radiation treatments, and all was still going well, I thought radiation was going to be easy . It seemed so gentle and there were no side effects for at least the first 7 treatments....until.......after a short 2 weeks the external burns started to show on my throat.
My voice disappeared as my voice box was being burnt and I could no longer eat solids.
Swallowing became increasingly painful until it became impossible to even get liquids down without taking painkillers first.
By the end of my treatment my neck was burnt black and peeled from tiny suppurating sores due to the radiation burn.
If that was the external damage, imagine the radiation damage to my throat and organs internally!
I had lost all my taste buds and had no taste at all.
My saliva glands were also damaged and my saliva dried up completely.
The pain was so intense that I was on morphine 5 times a day.
I was losing weight ! I am a slim person and I knew that I could not afford to do that, so my husband Craig, bought me a juicer.
I lived on painkillers to numb my throat and fresh juices daily, in order to maintain my strength and give my body every nutritional advantage to repair and heal.
I knew that nutrition was a key element to my survival as much as believing that I would survive this!
I will discuss nutrition in a later blog.
Radiation made me violently ill and vomiting became a daily routine.
I used to carry a lime green bucket with me each day to radiation as I would get off the table and not even make it to the front doors before the vomiting started for the day!
What really surprised me was when my hair loss was affected by the radiation, not the Chemo.
I was warned that my hair could fall out and I dreaded the day. I have long hair that when left to dry forms soft locks like a gentle perm.
I stood in front of the mirror one day and an entire lock just came away in my hand. I looked at it and burst into tears as I could not imagine myself bald.
I have one ear that stands out further than the other and all I could think of was how am I going to hide my ear, as the tears streamed down my cheeks.
I lost my hair from the back of my head to the nape of my neck as that was the area affected by the radiation treatment ... luckily I could wear the rest of my hair down over the bald section.
My hair grew back beautifully over the next 2 years, with baby soft locks that curled their way down to join the length of the rest of my hair.
Before starting radiation treatment, a wet mask was moulded to the contours of my face and once left to dry, set into a hard casing that mirrored every detail in my face.. This was then fitted onto my face each day and then used to clip me onto the table in order to hold my face in the exact position required.
The markings on the mask indicated where to radiate and where to protect my face in order to minimise the burn damage to facial nerves, tongue, arteries .
At first I felt claustrophobic but soon learnt to calm myself down and "zone out". Imagining all the good the radiation was doing ... not the destruction.
It was an opportunity for me to visualise the cancer healing and take myself to a calm and peaceful place before the vomiting started for the day!
The consequences of radiation after 2 years are that my saliva glands have still not recovered and I drink water constantly during the day and night to keep my mouth moist.
I have also learnt that water does not dissolve food like saliva does and have virtually given up eating pasta's or breads.
My sweet taste bud has also not recovered.
I miss this the most and sometimes get very frustrated....as chocolate tastes like cocoa, cookies taste like flour and marshmallows taste salty.
Foods don't taste like I remember them and I am often disappointed when I have a craving as my brain and my mouth no longer speak the same language
BUT....
I keep reminding myself of what it took to get to here and I am so grateful to have survived this that I find it a small price to pay for the GIFT OF LIFE!
It's hard to believe that my body was poisoned and burnt to that extent and then recovered to look and feel so healthy again.
I marvel at the capability of the human body!
It made me appreciate my body so much and I have such respect for the capacity to heal. I am very conscious of what I put into my body now as I know that my continued survival and ongoing health is directly related to the fuel and nutrition I feed myself.
Next Blog: How Craig ( my husband) dealt with my Cancer
Sunday, 25 March 2012
Coping with the Fear of Recurrence
PAGE 7
Before I write this week I would like to thank all my international readers from South Africa, USA, Canada, Australia, Israel, Russia and recently the Emirates, who are reading my blog. Your interest inspires me to keep writing and I hope that my survival story will be an inspiration to you or a loved one to be a survivor too.
My words are no longer just being recorded on paper; I now feel as though I am speaking to YOU!
I am digressing from my follow on blog as planned and want to tell you about something current which transpired this past week and is very relevant to the ongoing survival process.
I have been having pain in my left hip and this pain had been getting progressively worse over the past few months and it had spread into my lower back.
Staying in a positive frame of mind as a cancer survivor can leave you in a confusing place at times.
My survival instinct told me to run to the doctor for tests, yet my mind told me to stop being paranoid and at my age it was normal joint pain. Everyone around me told me to remain positive and said
"Don't worry it's nothing" or came up with a perfectly reasonable explanation.
So I put my fear aside and ignored it!
I had received the "positive" result for my second PET Scan recently and that meant that I was cancer free for my second year. A huge achievement and I was ECSTATIC.... but weeks later I could not shake this nagging concern.
What was also playing on my mind was that a friend, whom I had met during treatment ( a cancer survivor) had informed me recently , that his cancer had returned. It had spread to his liver from his colon after 2 years and that it had presented as back pain.
Another incident that broke me down emotionally was when my friend called me to say that a friend of hers, a young mother of two, who was struggling with throat cancer had been hospitalised the previous week and had passed away.
I then knew I had to know what this pain was and face the outcome.
I was petrified!
My mind was in turmoil!
The pain in my body was telling me that the cancer could be back!
My strength and positive belief was saying there was another simple explanation!
I was actually feeling guilty about wanting a positive outcome and wondering why my result should be positive when others so close to me are dying!
I understand now what is meant by survivor's guilt!
I called my Oncologist and told him about the pain I was experiencing and asked him if there was any chance that the PET Scan could have missed anything. Well... within an hour, I had had an appointment booked for a bone scan in a couple of days time.
The test was CLEAR and I am officially getting older as I have arthritis......What a pleasure to cope with considering the alternative being... Cancer?
I have to be grateful that I am clear.... not question why?.... or feel guilty about it!
It takes 5 years of being Cancer Free to be termed "IN REMISSION" and this is what I am aiming for!
I have a PET Scan once a year and a throat check up or biopsy annually as well. So, effectively I am having a check up every 6 months.
The PET Scan involves a radio-active dye being injected into my blood. I then drink a glucose liquid which carries this dye throughout my bloodstream to all my organs and should any cancer cells exist, they will react with the glucose and show up on the Scan.
This PET Scan is amazing as it takes 7000 cross section images of my entire body including all the organs, to detect any sign of cancer.
The throat check up is either done by inserting a camera into my nose and down my throat.. yes! it does feel as weird as it sounds, but you get used to it !
The throat biopsy is done under local anaesthetic where samples are taken from the throat area for analysis.
I live every day with the attitude that I have "SURVIVED CANCER" and that I am "CANCER FREE" and I refuse to allow my life and the decisions I make to be influenced by the fear of that cancer returning.
However, when the annual scans are due....a FEAR emerges out of nowhere, as though a light bulb has just been turned on, and it takes constant filtering of my thoughts to keep it at bay.
To help me cope with this, Craig (my husband), books my scan appointments and only informs me a day or two prior to the appointment so that I do not have too much time to think about it.
It's the fear of hearing those words again.... "IT'S CANCER"... and the possibility, that I will be back in that moment where my life is catapulted into that abyss of uncertainty.
When I hear the words "YOU ARE CLEAR" coming out of the oncologists mouth, it is the most precious gift as I know I have been given another year of my life.
I cry like a baby when I leave his rooms and his nurses all think it's hilarious... but I cry with sheer joy as I am so grateful to share another care free year with the people I love!
Next Blog: Coping with Chemo and Radiation
Before I write this week I would like to thank all my international readers from South Africa, USA, Canada, Australia, Israel, Russia and recently the Emirates, who are reading my blog. Your interest inspires me to keep writing and I hope that my survival story will be an inspiration to you or a loved one to be a survivor too.
My words are no longer just being recorded on paper; I now feel as though I am speaking to YOU!
I am digressing from my follow on blog as planned and want to tell you about something current which transpired this past week and is very relevant to the ongoing survival process.
I have been having pain in my left hip and this pain had been getting progressively worse over the past few months and it had spread into my lower back.
Staying in a positive frame of mind as a cancer survivor can leave you in a confusing place at times.
My survival instinct told me to run to the doctor for tests, yet my mind told me to stop being paranoid and at my age it was normal joint pain. Everyone around me told me to remain positive and said
"Don't worry it's nothing" or came up with a perfectly reasonable explanation.
So I put my fear aside and ignored it!
I had received the "positive" result for my second PET Scan recently and that meant that I was cancer free for my second year. A huge achievement and I was ECSTATIC.... but weeks later I could not shake this nagging concern.
What was also playing on my mind was that a friend, whom I had met during treatment ( a cancer survivor) had informed me recently , that his cancer had returned. It had spread to his liver from his colon after 2 years and that it had presented as back pain.
Another incident that broke me down emotionally was when my friend called me to say that a friend of hers, a young mother of two, who was struggling with throat cancer had been hospitalised the previous week and had passed away.
I then knew I had to know what this pain was and face the outcome.
I was petrified!
My mind was in turmoil!
The pain in my body was telling me that the cancer could be back!
My strength and positive belief was saying there was another simple explanation!
I was actually feeling guilty about wanting a positive outcome and wondering why my result should be positive when others so close to me are dying!
I understand now what is meant by survivor's guilt!
I called my Oncologist and told him about the pain I was experiencing and asked him if there was any chance that the PET Scan could have missed anything. Well... within an hour, I had had an appointment booked for a bone scan in a couple of days time.
The test was CLEAR and I am officially getting older as I have arthritis......What a pleasure to cope with considering the alternative being... Cancer?
I have to be grateful that I am clear.... not question why?.... or feel guilty about it!
It takes 5 years of being Cancer Free to be termed "IN REMISSION" and this is what I am aiming for!
I have a PET Scan once a year and a throat check up or biopsy annually as well. So, effectively I am having a check up every 6 months.
The PET Scan involves a radio-active dye being injected into my blood. I then drink a glucose liquid which carries this dye throughout my bloodstream to all my organs and should any cancer cells exist, they will react with the glucose and show up on the Scan.
This PET Scan is amazing as it takes 7000 cross section images of my entire body including all the organs, to detect any sign of cancer.
The throat check up is either done by inserting a camera into my nose and down my throat.. yes! it does feel as weird as it sounds, but you get used to it !
The throat biopsy is done under local anaesthetic where samples are taken from the throat area for analysis.
I live every day with the attitude that I have "SURVIVED CANCER" and that I am "CANCER FREE" and I refuse to allow my life and the decisions I make to be influenced by the fear of that cancer returning.
However, when the annual scans are due....a FEAR emerges out of nowhere, as though a light bulb has just been turned on, and it takes constant filtering of my thoughts to keep it at bay.
To help me cope with this, Craig (my husband), books my scan appointments and only informs me a day or two prior to the appointment so that I do not have too much time to think about it.
It's the fear of hearing those words again.... "IT'S CANCER"... and the possibility, that I will be back in that moment where my life is catapulted into that abyss of uncertainty.
When I hear the words "YOU ARE CLEAR" coming out of the oncologists mouth, it is the most precious gift as I know I have been given another year of my life.
I cry like a baby when I leave his rooms and his nurses all think it's hilarious... but I cry with sheer joy as I am so grateful to share another care free year with the people I love!
Next Blog: Coping with Chemo and Radiation
Tuesday, 6 March 2012
Dream becomes Reality
Page 6
Well, I don't know if I can call it a plan because I did not realise what an important role this dream would play in my recovery.... but it really worked for me and helped me through the darkest moments of my life.
I thought about setting myself a goal to aim for, so before treatment started, I booked the family a trip to Disney World Florida in 12 months time.
We had always spoken about taking the kids one day, so I thought it would be something positive to focus on during treatment.
I remember lying in bed one day wondering what state of health I would be in for this trip and suddenly I was overwhelmed by sadness. I contemplated the 3 realities that faced me:
* I could be fully recovered and have my energy back
* I could still be weak but at least I could relax at the Resort while the family had fun,or
*I would not be there and my husband and children would need this trip to bond as a new family unit.
When this last thought entered my mind, I was sobbing and tears were streaming down my face. I realised how destructive this way of thinking was to my healing process and forced myself to change my thought pattern.
From then on I viewed the trip as my PRIZE or REWARD for having to go through this experience.
In moments when my body was beaten down and my mind struggled to hold it's own... I would visualise the trip to Disney and imagine myself healthy and laughing, riding all the roller coasters and standing in front of Cinderella's castle with Craig and the kids.
There was no other script to this story in my mind!
Well, guess what? .... 2 weeks before we left for Disney, my PET Scan showed I was clear of cancer.
I felt amazingly healthy! I walked around Disney day after day and rode every roller coaster that I could.
It was a dream come true... OUR CELEBRATION OF LIFE TRIP as we called it!
Next Blog: Coping with chemo and radiation
Well, I don't know if I can call it a plan because I did not realise what an important role this dream would play in my recovery.... but it really worked for me and helped me through the darkest moments of my life.
I thought about setting myself a goal to aim for, so before treatment started, I booked the family a trip to Disney World Florida in 12 months time.
We had always spoken about taking the kids one day, so I thought it would be something positive to focus on during treatment.
I remember lying in bed one day wondering what state of health I would be in for this trip and suddenly I was overwhelmed by sadness. I contemplated the 3 realities that faced me:
* I could be fully recovered and have my energy back
* I could still be weak but at least I could relax at the Resort while the family had fun,or
*I would not be there and my husband and children would need this trip to bond as a new family unit.
When this last thought entered my mind, I was sobbing and tears were streaming down my face. I realised how destructive this way of thinking was to my healing process and forced myself to change my thought pattern.
From then on I viewed the trip as my PRIZE or REWARD for having to go through this experience.
In moments when my body was beaten down and my mind struggled to hold it's own... I would visualise the trip to Disney and imagine myself healthy and laughing, riding all the roller coasters and standing in front of Cinderella's castle with Craig and the kids.
There was no other script to this story in my mind!
Well, guess what? .... 2 weeks before we left for Disney, my PET Scan showed I was clear of cancer.
I felt amazingly healthy! I walked around Disney day after day and rode every roller coaster that I could.
It was a dream come true... OUR CELEBRATION OF LIFE TRIP as we called it!
Sunday, 26 February 2012
Preparing mentally
Page 5
The road ahead was daunting, so Craig ( my husband) and I decided the only way to cope would be to get through one day at a time and not think about tomorrow.
That is what we did!
Each day we focused only on getting through that day no matter how hard it was and just kept hoping that the next day would be better. By picking out a good day out of a bunch of bad days it gave me hope that soon it would be reversed and that there would be one bad day in a bunch of good... .. it did get to that eventually!
I allowed myself to be honest with my family and friends and would admit to them when I was really in pain and feeling down but the key to surviving this was not allowing myself to wallow in self pity.
I realise now how important it was to be honest with the family about how I was feeling on a daily basis. This air of honesty allowed us all to deal with our emotions and not walk around on egg shells petending everything was alright.
I only had limited energy each day and decided to use it in a positive way and visualise my recovery and not waste it on negative thoughts of being ill or possibly dying.
I imagined separating my body and mind.
I had no control over my body. It was being prodded, poked, poisoned and burnt and I had no choice...It was under the control of the doctors and my body was going to react in it's own way and heal in it's own time.
All I could do was learn to be patient and make sure I gave my body every advantage from a nutritional point of view.
Great idea!.. but it did not work all the time though, seeing as I could not swallow or eat within 2 weeks of starting radiation on my throat.
BUT.. what I did have control over was my thoughts!
I truly believed my body would follow my mind.
I tried to filter my thoughts by acknowledging when I was scared or sad or in pain.
I cried often.
Then I would put the thought aside and focus on being well and imagine that being the only outcome.
( see my next Blog and you will read about what I was aiming for and visualising)
There was no point in getting frustrated or angry and the big one, not to find someone to blame
These 3 feelings...the acknowledgement thereof, and dealing with them (so I realised) are the most important things to come to terms with as early as possible.
The anger of why this happened to me.
I had every reason to ask "WHY ME?" and " WHAT DID I DO TO DESERVE THIS?"...
This cancer usually affects males ( I am female), smokers ( I have never smoked), drinkers of alcohol ( remember I don't drink because of migraines) and predominantly ages over 50 ( I was 45).
The frustration of loosing control over every aspect of my daily life and hating that feeling. Loosing my independence and feeling like a burden on everyone around me.
How easy it would have been to find someone to blame. All those neurologists who did MRI's and CT Scans in that area. I used to tell them that the migraine's started in the exact region where the cancer was later found, but as we were told the two are not related.
I decided it was wasted energy from the start and filtered my thoughts away from that kind of thinking.
The best way to deal with this was HEAD ON! So, I accepted that I had Cancer, accepted that it was serious and that I was fighting for my life and that I had to do everything possible to give myself the best chance of spending my old age with my amazing husband and to see my two beautiful children grow up.
This was my plan:
Hand my body over to medical science (it was not mine anymore)
Filter my thoughts and focus them on Survival ( my mind was mine)
Give my body as much nutrition as possible to heal the cells that the chemo and radiation were destroying
Next Blog: My Dream becomes Reality
The road ahead was daunting, so Craig ( my husband) and I decided the only way to cope would be to get through one day at a time and not think about tomorrow.
That is what we did!
Each day we focused only on getting through that day no matter how hard it was and just kept hoping that the next day would be better. By picking out a good day out of a bunch of bad days it gave me hope that soon it would be reversed and that there would be one bad day in a bunch of good... .. it did get to that eventually!
I allowed myself to be honest with my family and friends and would admit to them when I was really in pain and feeling down but the key to surviving this was not allowing myself to wallow in self pity.
I realise now how important it was to be honest with the family about how I was feeling on a daily basis. This air of honesty allowed us all to deal with our emotions and not walk around on egg shells petending everything was alright.
I only had limited energy each day and decided to use it in a positive way and visualise my recovery and not waste it on negative thoughts of being ill or possibly dying.
I imagined separating my body and mind.
I had no control over my body. It was being prodded, poked, poisoned and burnt and I had no choice...It was under the control of the doctors and my body was going to react in it's own way and heal in it's own time.
All I could do was learn to be patient and make sure I gave my body every advantage from a nutritional point of view.
Great idea!.. but it did not work all the time though, seeing as I could not swallow or eat within 2 weeks of starting radiation on my throat.
BUT.. what I did have control over was my thoughts!
I truly believed my body would follow my mind.
I tried to filter my thoughts by acknowledging when I was scared or sad or in pain.
I cried often.
Then I would put the thought aside and focus on being well and imagine that being the only outcome.
( see my next Blog and you will read about what I was aiming for and visualising)
There was no point in getting frustrated or angry and the big one, not to find someone to blame
These 3 feelings...the acknowledgement thereof, and dealing with them (so I realised) are the most important things to come to terms with as early as possible.
The anger of why this happened to me.
I had every reason to ask "WHY ME?" and " WHAT DID I DO TO DESERVE THIS?"...
This cancer usually affects males ( I am female), smokers ( I have never smoked), drinkers of alcohol ( remember I don't drink because of migraines) and predominantly ages over 50 ( I was 45).
The frustration of loosing control over every aspect of my daily life and hating that feeling. Loosing my independence and feeling like a burden on everyone around me.
How easy it would have been to find someone to blame. All those neurologists who did MRI's and CT Scans in that area. I used to tell them that the migraine's started in the exact region where the cancer was later found, but as we were told the two are not related.
I decided it was wasted energy from the start and filtered my thoughts away from that kind of thinking.
The best way to deal with this was HEAD ON! So, I accepted that I had Cancer, accepted that it was serious and that I was fighting for my life and that I had to do everything possible to give myself the best chance of spending my old age with my amazing husband and to see my two beautiful children grow up.
This was my plan:
Hand my body over to medical science (it was not mine anymore)
Filter my thoughts and focus them on Survival ( my mind was mine)
Give my body as much nutrition as possible to heal the cells that the chemo and radiation were destroying
Next Blog: My Dream becomes Reality
Thursday, 23 February 2012
The days before Treatment
Page 4
The treatment included Chemo as well as a full course of radiation Monday to Friday for 3 months. This would start as soon as the existing wound from the removal of the 3 glands on my neck was healed. This gave me a couple of weeks to prepare myself.
I remember going to the shopping mall alone one morning just to find comfort in normal daily routine by walking around and shopping. I felt as though I was having an out of body experience. I no longer felt grounded, I had the feeling I was floating. People were walking by oblivious to things around them and taking their tomorrow so for granted.
I realised mine was not!....and suddenly there was no comfort in any material things around me. The shoes and clothes that I used to love buying seemed so pointless and I could not wait to get out of there.
I envied everyone around me and wished I could have told them how privileged they were to be healthy.
I learnt such an important life lesson from having this experience with Cancer and that was:
When my life was under threat, all material value became so insignificant and that my family was all that mattered.
It was at this early stage that I found myself asking some serious questions.
Have I been a good enough mother?
Have I been a good enough wife?
Have I spent enough time with my children?
Would they have enough memories of me to last them a lifetime?
I felt so privileged to be able to stand in that space of no regret and answer myself "YES "
My family has always come first and my friends have all heard me say many times.
"I only have my kids for 17 years before they leave home so, I want to spend as much time with them as possible and create as many memories as I can. It is these memories that will bring them home when they are older"
Craig and I have lived by that motto!
I did not want to face this battle with only my family so, I contacted all my friends individually for coffee dates.
I told them I needed their support and that I wanted them to keep in contact with me and not feel that they should leave me alone because I was ill. I explained that I would loose my voice within weeks as the radiation on my throat would damage my voice box. I asked them to sms me at anytime as I could always reply via sms if I could not speak.
I wanted them to understand that when things were at their worst, I would need them the most.
My friends did not let me down!
My home was filled with flowers; they set up lift clubs to fetch my children from school and sport; and people I thought were acquaintances are amazing friends today.
One friendship was lost though... a close friend who I spent many years with... seeing her through trying times in her marriage. Yet, she could not pick up the phone to say " How are you, I hear you are ill"
Looking back, I have realised how each person deals with illness and the possibility of mortality in a very different way. Some people cannot face it at all and that is not easy to come to terms with as it's often a person you expect the most from.
After seeing so many people give of themselves in my time of need, it gave me an opportunity to experience really personal human connections and build even better friendships.
Next Blog: Getting my Mind prepared
The treatment included Chemo as well as a full course of radiation Monday to Friday for 3 months. This would start as soon as the existing wound from the removal of the 3 glands on my neck was healed. This gave me a couple of weeks to prepare myself.
I remember going to the shopping mall alone one morning just to find comfort in normal daily routine by walking around and shopping. I felt as though I was having an out of body experience. I no longer felt grounded, I had the feeling I was floating. People were walking by oblivious to things around them and taking their tomorrow so for granted.
I realised mine was not!....and suddenly there was no comfort in any material things around me. The shoes and clothes that I used to love buying seemed so pointless and I could not wait to get out of there.
I envied everyone around me and wished I could have told them how privileged they were to be healthy.
I learnt such an important life lesson from having this experience with Cancer and that was:
When my life was under threat, all material value became so insignificant and that my family was all that mattered.
It was at this early stage that I found myself asking some serious questions.
Have I been a good enough mother?
Have I been a good enough wife?
Have I spent enough time with my children?
Would they have enough memories of me to last them a lifetime?
I felt so privileged to be able to stand in that space of no regret and answer myself "YES "
My family has always come first and my friends have all heard me say many times.
"I only have my kids for 17 years before they leave home so, I want to spend as much time with them as possible and create as many memories as I can. It is these memories that will bring them home when they are older"
Craig and I have lived by that motto!
I did not want to face this battle with only my family so, I contacted all my friends individually for coffee dates.
I told them I needed their support and that I wanted them to keep in contact with me and not feel that they should leave me alone because I was ill. I explained that I would loose my voice within weeks as the radiation on my throat would damage my voice box. I asked them to sms me at anytime as I could always reply via sms if I could not speak.
I wanted them to understand that when things were at their worst, I would need them the most.
My friends did not let me down!
My home was filled with flowers; they set up lift clubs to fetch my children from school and sport; and people I thought were acquaintances are amazing friends today.
One friendship was lost though... a close friend who I spent many years with... seeing her through trying times in her marriage. Yet, she could not pick up the phone to say " How are you, I hear you are ill"
Looking back, I have realised how each person deals with illness and the possibility of mortality in a very different way. Some people cannot face it at all and that is not easy to come to terms with as it's often a person you expect the most from.
After seeing so many people give of themselves in my time of need, it gave me an opportunity to experience really personal human connections and build even better friendships.
Next Blog: Getting my Mind prepared
Subscribe to:
Posts (Atom)