Take Control and have fun with Wigs

It can be very daunting seeing your hair fall out in front of your very eyes.  I can remember finding clumps of hair on my pillow!  When I ran my fingers through my hair more clumps would appear ... on the headrest of the car seat, on the floor, in the sink and on my clothing.  This took place day 15 after my first chemo session.

I asked my sister to shave my hair in celebration of me taking control of this journey.  No turning back.  Bald is beautiful! We chose a Saturday night for the event and both my husband and brother-in-law shaved their heads too ...

Finally - the sexy new wig received loads of compliments!

Moment of today

My cat - Chelsea just loves having me home

The Chemo Journey - Don't be Afraid

My chemo day lasted up to 12 hours.  I had a cocktail of chemicals three of which were the most toxic,  Doxorubicin, Cyclophosphamide and Cisplatin.  
Be prepared for what will happen today.  Visit the oncology ward/room of your hospital and introduce yourself to the nurses the week or day prior to the big event.  

The nurses will first get you to provide them with a urine sample and will test this against other samples throughout the day, so wear comfortable pants (not jeans like I did).  An IV shunt was placed in a vein of my left hand and used to flush out with Saline.  Then, the first of many drugs started to flow slowly through the canula.

Take a heat pack as the arm being used will get cold.  A heat pack keeps the veins soft and allows them to open a little more as the drugs begin to take effect.  An ipod will also be handy as this is the perfect time to visualise all the bad cells leaving the body and/or meditate.

1. Learn what drugs are going to be administered today and how long you will be there - in my case it was 9 hours.  

2. Secondly - bring along a cancer pal to accompany you and remember the experience will be very hard for them too.  

3. Packs lots of snacks.  I tried to be healthy but my side effects resembled being extremely hungover with crazy  jet-lag and the flu at the same time.  The only thing that satisfied me were hot chips and often a burger (even if only a bite).  Don't deny yourself what the body is asking for as you won't feel like eating anything over the next several days. 

4. If you are taking Dexamethasone - be prepared to gain weight.  Visit chemocare.com for a list of possible side effects.

Being Organised

As promised yesterday, today's blog is all about keeping yourself organised before and during all your treatments.   My team consisted of: my husband who was my ops manager, my sister became my secretary, cook, chauffeur, atm and everything in between, the rest of the family were on top of everything else I needed from time to time.   Friends were often my comic relief.  They visited, took me out for morning tea and made me laugh at the silliest things.  Those who are reading this blog know it's YOU!

Seriously though, being organised is essential.  Both my sister and husband are Virgos (totally obsessive compulsive) and I'm a Scorpio (always seeking justice and truth).  A dynamic combo.

Together we created a slick operation.  I kept a medical folder with sub-dividers titled: Research/Medical Bills + Receipts/Correspondence/Calendar Planner/Insurance/Pain Register/Questions.

I also kept a journal that helped me keep track of all the treatments, supplements, list of side effects and had a specific booklet where I wrote the questions referred to during my medical visits.  

I had either family or friends attend appointments with me as their ability to digest the doctor's comments helped me focus.  I found I often focused on one small negative message as opposed to the other 9 positive ones.  My team would then debrief the appointment and I would write the detailed summary of the event in my journal.  I referred to this journal daily and as time passed I realised how much I came to terms with the illness. 

As far as medical appointment go make sure you schedule them early so you don't have to fast all day eg CT Scans, PET Scans, Blood Tests and the dreaded Biopsies.

Top tips for today are:

1. Keep focused on the outcome

2. Be clear with your expectations

3. Don't worry about the future - today ..... the present is all that matters

Next, I will share the first of many chemotherapy experiences including photos.  This is the time I wanted to crawl into my Scorpio shell and reflect.  I had to learn to ask for help from those who would cope seeing me in pain.  I didn't know what chemo would be like so having cancer pals around got me through some difficult times.

Become the CEO of Project Health

Having had management roles for 20 plus years,  I had some idea about being organised and bossing people around.  After getting through the shock of being told I had cancer in my right lung I had no choice but to get moving.  My first few days of acceptance took me to a dark and very lonely place.  It was unfamiliar territory and I chose to get out quickly.

I decided to project manage my health and assumed the role of CEO of GIGI & Co.  Every CEO knows the importance of recruiting competent staff to promote and drive the corporate vision!  Well, my situation wasn't any different.  I selected a leadership team who I allowed to get close during my illness.  Handpicked members of my family headed up by my amazing sister, various friends who to this day have stuck by me on a daily basis, doctors, specialists and healers!   My husband was my trusted advisor and the Operations Director.  The most important message I have for you today is that you select your team as soon as possible.  Time is of essence so get cracking!  

My second message for you is to go doctor shopping and aim for the best.  Not every doctor/oncologist/surgeon you visit will be suited to you.  This is the time to buy the best you can.  Call every hospital in your area, call your friends and ask them if they know of anyone they may recommend.  

As an example, my first oncologist, albeit a great breast cancer and prostate cancer specialist was not the right doctor for me. He told me he wasn't familiar with my illness and at the same time told me "if not treated, you may last 4-6 months".   I always said the key to a great relationship was open and honest communication.  Well, I felt my doctor and I spoke different languages let alone be able to communicate.  Listen to you gut ... and go with the team that feels right.

We went doctor shopping and after 4 weeks we found two specialists.  Both recommended by different friends and unbeknown to me ... both worked together 1. Professor of Oncology and 2. Professor of Cardio-Thoracic Surgery.  Both these doctors saw me within a few days of making the call and both had treated advanced invasive Thymoma State IV A.

Top tips for today:

1. Entrust family and friends with key roles and responsibilities ... DELEGATE

2. Find the person who knows most about your disease

3. Quality lasts .. don't settle for second best

As I had four weeks to get myself organised, process the information, find the right specialist for me and research all about Chemotherapy and Thymoma, the next few blogs will have loads of information to help you get through a challenging and busy time.  Being the CEO of your health is a very busy role. 

Thank God it's Friday!

Now What?

When you are healthy you think Cancer is far away ... but, when you are sick, suddenly the whole world wakes and as you open your eyes you note Cancer is all around you.  It's like buying a new car and suddenly everyone is driving the same style of car.  Funny that.


There is no way of sugarcoating the words 'You have Cancer. If it's not treated you may last approximately 4-6 months'.  Getting such a diagnosis threw my entire world upside down.  I wanted to climb out of my body but unable to.   I felt I had a straight-jacket on and as much as I wanted to escape I couldn't.


Having processed various diagnosis, I can say it doesn't get any easier BUT  this is not the time to curl up and go mad.  There are loads of decisions to make so the more grounded and focused you are the better.  Sure, let yourself go, cry, scream but come back to a place where you can regain some control to deal with what will lie ahead.


My top three tips for today are:


1. Give yourself time to process the diagnosis and accept the "Why Me"
2. Don't tell everyone
3. Delegate mass email duties to your husband, partner, friend.  This is a great way to communicate to the masses and you will avoid the exhaustion of telling the same story again and again

Quote of the day

Pen to Paper - Better late than never

Well, here I am for the first time.  Typing away after giving lots of thought to writing about what 'Living in the MOMENT' means to me.  In June 2009 I received a phone call from my doctor as a result of having a yearly check up.  I was told I had Invasive Thymoma and it had spread to the right lung.


Time stopped at that MOMENT.  I felt like I was being run over time and time again.  I quickly collected my thoughts and asked if the disease was going to kill me.  My doctor took some time to respond and answered 'you must start chemotherapy immediately'.  After seeing the first Oncologist I was told I would have six months to live without treatment. 


Twelve months on ... I'm still here.  A survivor living in that MOMENT and with only one lung.  I hope you find my entries helpful.  I will share with you my learnings, the importance of using food as medicine, the importance of getting second opinions, and the importance of surrounding oneself with wonderfully loving and supportive people.

Publish Post