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
                                                                              
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                                                                            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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