Tuesday 13 November 2012

"A caregiver's perspective" - from a reader


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Today I am posting a blog sent in to me from a reader, Cameron Von St James.
I have often said to friends...." I had morphine 5 times a day to help me through my cancer, but my poor husband had to cope with me, the emotional well being of our children and my mom while holding down his job and coping with all the bills and doctors.

Here is a valuable article written from that perspective...enjoy!

Thank you Cameron for sharing this with all of us!
 
 
 
 One Caregiver's Perspective of a Cancer Diagnosis

My wife, Heather has said several times that she cannot imagine how I managed to deal with her mesothelioma diagnosis. I spoke with her once about it, but I’d like to share more in the hopes that it might help others currently struggling through cancer.  

Prior to her diagnosis, our first daughter, Lily, was born. We were overjoyed with her birth, but the diagnosis soon after lead to feelings of fear and uncertainty. When the doctor said the word mesothelioma, I looked into my wife’s tear-filled eyes and wondered how we would cope with the diagnosis.

When I heard, I was overwhelmed and had feelings of despair. Then, I heard the doctor’s questions about my wife’s future medical care, and I was brought back to reality. This was the beginning of many days that I would feel overwhelmed, but I still had to help my wife decide the best course of action for her medical care.
 

After her diagnosis I had feelings of rage, fear and anger, and controlling these feelings was a major issue. These bouts of anger were often accompanied by profane language. However, I quickly recognized the need to be a source of strength and stability for my wife and daughter.  I knew that the last thing they needed was to know just how scared I really was. This is why I learned to control my emotions. I succeeded most days. On my weak days, I remembered why I needed to remain strong, optimistic and stable, but it wasn’t always easy.

My to-do list of responsibilities grew immensely following the diagnosis. My tasks ranged from work to travel arrangements for my wife’s medical care, taking care of our home, Lily, our pets; the list seemed endless. I had to prioritize my daily tasks to reduce my feelings of being overwhelmed. I also learned to accept help from the many generous members of our community, friends and family. Their unbelievable outpouring of support helped us understand that we were not alone in this fight.


After Heather’s surgery, there was a two-month period when I could not see her or Lily because they both were in South Dakota with Heather’s parents. Lily had been staying there during the operation, and Heather flew down following the surgery in order to recover and prepare for the next round of mesothelioma treatment: radiation and chemotherapy. I had to remain behind in order to work and take care of our home, and because of this I was able to see my family only once during those long two months.


I drove 11 hours one night on a Friday after work, in the middle of an unexpected snowstorm to see them for the weekend. I was able to sleep for a few hours in my car while the plows cleared the roads, and I arrived, exhausted, on Saturday morning. I spent a day and a half with them before making the 11-hour drive back home to be at work Monday morning.  It was a lot of grueling travel for just a few precious hours with my family, but it was worth every second. My brief separation from my wife and daughter was difficult, but it was necessary given our circumstances.

 

I learned through this ordeal that while many of the decisions we were forced to make were difficult, I had to be able to take comfort in the fact that we were able to make any decisions at all.  Our ability to choose a course of action gave us some sense of control over a situation that oftentimes seemed to dominate our lives.
I am so grateful Heather is alive and healthy six years later, and I hope our story will be a source of hope and inspiration to those currently battling cancer.
 
 
Cameron Von St. James
Mesothelioma Cancer Alliance
http://www.mesothelioma.com/blog/authors/cameron/
 
 

 

Thursday 8 November 2012

Twitter and Facebook

Please follow my twitter page @PinkPhoenixSA for daily quotes to inspire and motivate you in the fight against cancer or,
"like" Pink Phoenix Cancer Foundation on Facebook, to follow the initiatives we have launched, the projects we fund and the present and upcoming fundraising functions....and remember

"You cannot win the race if you don't run....you cannot win the victory if you are not prepared to battle!

Here's something Funny..2

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Here's something Funny 2:

My husband Craig was away for a short business trip and my mom had flown down from Pretoria to assist while he was away.

My mom cannot drive a stick shift car so Sam, my close friend, drove me to treatment that day.

It seemed to be a lucky day after radiation that morning, as I got off the table, out of the building and into the car without vomiting yet.

Sam was driving, my mom in the back seat behind me and I was in front, in the passenger seat.

Sam had witnessed the result of chemo and radiation but my poor mom was in for a surprise as this was her first day with me and the first "hands on experience" of the after effects.

With my "trusty" lime green bucket tucked safely between my legs and the nausea overwhelming my senses, we made it onto the road before the wretching started.

The problem that day was that I had forgotten to bring my hair clip with me so My hair, all clean and blow waved, was hanging in all it's glory around my face.

As I heaved and projectile vomited into the bucket, a large lock of hair fell into the bucket at the same time.

Sam saw what had happened, I was trying to call to my mom to grab my hair from behind but could not get the words out in-between the wrenching and vomiting .

My poor mom is such a sensitive soul and froze in panic so Sam, while still driving decided to assist in retaining my dignity by lifting the hair out the bucket and attempting to hold it back for me.

By attempting to pull the hair out before it touched the content of the bucket, she probably should have done it gently but....too late!

My lock of hair was soaked and as her hand pulled it back, the spew flicked all over her and the steering wheel.

There was nothing anyone could do, so Sam adopted the most amazing attitude about the situation and putting me at ease about feeling guilty and embarrassed, she proceeded to drive home with herself and the steering wheel in a soggy mess.

At the time we did not find it funny but now it is one off our favorite stories which crack us up every time we tell it.

Sam admits that before her experience with me she could not deal with seeing anyone vomit but....after her experience that day and dealing with it all the way home.... She can now witness all 3 of her kids and the dog vomiting without even flinching.

So you see... Even my friends gained something positive out of a traumatic experience.

I would like to invite you to find your own humorous story and send it to me on sharonvstraaten@gmail.com so that I can publish it on my blog.

Let us spread the laughter and show that we can find a moment of light and laughter in our darkest moments!

Tuesday 6 November 2012

Here's Something Funny

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 Here's Something Funny

I have not updated the blog in a while as LIFE was happening and I was loving every minute of it!

It's time to share the excitement !

I was invited to attend a fundraiser for breast cancer and at the function I volunteered my time  to help out where I could.

This lead to an invitation to speak at a fundraiser !

My thoughts were not to speak about the hardship of cancer and the treatment thereof but I wanted to share my thoughts, my fears and ultimately what it took to dig deep and find the courage and determination to fight with everything I had to survive .

While thinking back and writing notes, I was intrigued that I could recount 2 humerous events so vividly that occurred during treatment. I marvelled at the strength of my mind to be able to recall the positive and happy thoughts and after only 18 months was shutting out the dark moments and the trauma associated with the treatment of chemo and radiation.

So I decided to share those with you today to show you that there is always something good to come out of any traumatic situation.... If you let it!

Story 1:
I wore a full facial and neck mask, moulded and set into every crevice of my face, clipped onto a board for radiation treatment, every day Mon-Fri for 3 months.

As I said in my previous blog.... I had to find my happy place and go there every day during this treatment or claustrophobia could have just been ONEmore thing to worry about.

It was my last day of radiation treatment and I had been counting down the days.

It was the longest treatment...or so it seemed... Possibly because I could not wait to take the mask off for the final time.

The moment arrived and the."monster machine" stopped turning and ground to a very noisy halt.

The hard wooden bed slid slowly forward into the open and stopped with a jolt.

My heart was racing as I heard the footsteps of the nurse stop next to me and felt the release of pressure against my face as the 4 clips clicked open.

FREEDOM!

I jumped off the bed, feeling the nausea already rising from the pit of my stomach  and headed for the door.

Just before reaching it, the nurse called out...."Mrs. Van Straaten....would you like to keep your mask as a SOUVENIR "....

WHAT?.......was she kidding me?

All I could imagine was bringing this thing out at dinner parties?...How to kill the party

I did not even bother answering her as I ran for the door before loosing the content of my stomach into my trusty lime green bucket tucked under my arm.













2nd Story:





Sunday 29 April 2012

How my having Cancer affected Tayla (my daughter)

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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.



Friday 27 April 2012

How Craig ( my Husband) Coped with my Cancer

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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

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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

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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

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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

Sunday 26 February 2012

Preparing mentally

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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

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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


Telling the Children

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On our way home in the car we discussed how we should tell our children about what we were to face as a family. My daughter was 13 and my son 12, so they were at such vulnerable ages in their lives to have to understand this.

Before talking to them, we decided  it would be best to see a Psychologist who knew both children from doing an educational assessment on them at an earlier age.He could advise us on how to break the news to them without causing fear and trauma.
In hindsight, having seen what they did, they were affected anyway no matter how hard we tried to make it easier... but I will discuss that later.

My husband Craig is a fantastic cook, and a legend amongst our friends and family. Food is the heart of our home so the Psychologist's advice was, prepare some comfort food and tell them in an environment where they can express their feelings and find comfort.

So we laid out all the lovely snacks and treats and told the kids we had something important to discuss with them. We were advised to tell the truth about what I would be facing over the next few months. The loss of weight, possible loss of hair, vomiting and the loss of my voice.

My daughter, Tayla, burst into tears at the mention of Cancer as my husband held her tight but neither of them asked whether I could possibly DIE, so we decided not to go there.

My son, Jarrett, listened with tears in his eyes and when we had explained everything, he asked, " Can we talk about something else now!"

That was our cue. The war had begun!



This photo was taken the day before my gland operation by a friend of mine who is a photoghrapher.
I asked her to take these photo's of us as I had just been diagnosed a few days earlier and I was so uncertain at that stage of whether I would survive, I wanted these photo's for my family to remember us by.
We all had such fun at this photo shoot!

These photo's became our pride and joy and a symbol of our love, strength and endurance each time we look at them now

Wednesday 8 February 2012

The Treatment Options

 Please click on " OLDER POSTS" to start on page 1

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Our ENT Surgeon and the 1st Oncologist suggested a second operation as the cancer was fast growing and they were concerned about the other glands being infected. A"Y" cut was to be made in the neck and onto the shoulder to remove all the glands in that area. This was a very difficult surgery with all kinds of disfiguring complications to my face ( a high risk to facial nerves), tongue and shoulder area. Our biggest concern was waiting for 6 weeks for the 2nd wound to heal before starting radiation treatment as the cells won't heal once radiation starts burning them.

This cancer was just spreading through my blood.

It could settle in any organ!
We felt so helpless and scared.... lost in our own worlds of silence as we walked outside the hospital, holding hands.

Looking back, it was that moment that a Guardian Angel was sent to help out!

A friend of my husbands walked by and saw the state we were in. We told him what was happening and he immediately phoned a friend who had been treated for colon cancer. He called his Oncologist who set up an appointment immediately for a second opinion with his Oncologist

We are such good friends with Rob today and I call him my Guardian Angel as he was the one who sent sent me to the person who knew how to save my life!


Rory, the Oncologist, suggested we start treatment immediately and aggressively as he had one of the few radiation machines required to treat cancer in this tricky area of the throat and neck. There was only a 3% difference in the survival statistics between the two methods of treatment and the other involved dramatic additional surgery.

My husband, Craig and I, were both in tears when we asked the Oncologist if he would take me on as a patient.

That was the moment it all became REAL for me and I sobbed so hard that my whole body was gasping for air!


Next Blog:  Telling the Children

The Tiger Within - The Diagnosis

                                                                     THE TIGER WITHIN
                                                                              
                                                                                Page 1

                                                                            The Diagnosis

It has been two years since I heard those Magic Words
'"THE CANCER IS ALL CLEAR"
and so many people with whom I have come into contact since then have said,
"Why don't you tell your story, others could learn so much from it."

I was inspired by that hope that I could make a difference to someone...

For 5 years I suffered from the most debilitating migraines; then in July 2009, I was diagnosed with Cancer (stage 2 in the throat and stage 4 in the glands)

This is my Story:

I was experiencing up to 17 migraines a month and was trying any drug suggested on the market.
My body would reach a stage that it was so drug dependent that I would be in what is called a "Rebound Headache stage" where I lived with a constant headache and only the level of intensity changed.
When these stages were reached I would either be induced with heavy drugs into a comatose state or hospitalised up to 3 days to try and break the cycle.
The migraines were so bad that I used to vomit from the pain.
I had to lie on my bed in pitch darkness and not move for hours as my eyes felt as though they were going to explode in my head.

After 2 CAT scans , MRI's, in and out of hospitals (in different cities) and 4 nuerologists, no specific cause for these migraines could be diagnosed.

Everything seemed to trigger them off.
I could not touch any form of alcohol, so gave that up completely....OH! how I miss my red wine!

I could not enter a perfume store. In fact, if a woman walked past me wearing a strong perfume, within 10 minutes I could not see straight...... There went any expensive perfume gifts from my husband!

I could no longer attend music concerts and even going to the movies with my family became impossible.

The children learned that there was no music allowed in mom's car so they prefered to have dad drive them.

Driving at night was no longer possible as I had to wear sunglasses to avoid the oncoming lights or close my eyes for the duration of the journey.

Friends stopped asking us out as I was always cancelling engagements or leaving due to a migraine and our social life virtually became non existent.

My husband, who is my Rock, became mother and father, coping with all the stresses at work and at home.

My relationship with my children suffered as I was constantly in bed and incapable of being the mother the needed.

I felt like I was failing my family and my life was a MESS!

My 5th Nuerologist introduced me to a drug called NARAMIG and WOW!... it gave me my life back!

I still got migraines but  had them under control as I would pop a Naramig as soon as I felt it setting in, and within an hour or two, I had relief.
No more dark rooms for hours, vomitting and hard drugs to knock me out.
I  felt I was living again...

THEN,

a few months later on a routine visit to the doctor for my son (as he had a cold) I asked my GP to look at a swollen gland in my neck.

He became very concerned after two courses of anti-biotics and the gland had growm larger, so he insisted on a manual biopsy immediately, in his rooms.

The call came during our family dinner on 23rd July 2009.

I took the phone and walked away from the table  as my GP told me what the results were.

The cells were " A- Typical"

I remember asking him "What that meant".. but I knew..... I just needed to hear the words from his mouth
It was Cancer!

I did not burst into tears or get hysterical like in the movies..I just kept thinking "This is not real .... It's not really happening"

I remember telling myself and my husband that it would NOT BE SERIOUS!

The days that followed were a blur.
I was whisked off to an ENT Specialist and before I knew it I was on the operating table having glands removed.

On waking up in the hospital, I still felt so surreal.
I almost expected someone to tell me it was all a misunderstanding .....until... the Specialist sat on the end of my bed and gave me the prognosis.

3 glands had been removed.
The 3rd had burst and the cancer cells known as squamus cells were now in my bloodstream.
They had been very lucky and found the primary source of the cancer in my Hypopharynx (throat) which was at stage 2 and this had spread to the glands which were at stage 4.
 It was inoperable!

 His words were " You have A YEAR of good living left"
I thought "What a FOOL to say such a stupid thing, as it could not possibly mean I was going to DIE"
I could not even bring myself to ask him...
"Does that mean I am going to DIE"...... for the fear that he might say "YES"
I had two young children and a husband  that I adored, so dying was not an option for me.

I prepared for a FIGHT!


Next Blog: The Treatment Options

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