New Limitations

There is very little information about recovery after a pneumonectomy and the effects on the physical, social and lifestyle activities of previously healthy and active people.  I loved to run, complete demanding spin sessions at the gym and swimming a kilometre at a time was a form of meditation for me.   Would I ever be able to do that again? Did it matter?  What would my new limitations be?  Here are some hints:

Shortness of Breath: most things will be exhausting for many months.  Twelve months post surgery, I still struggle walking up the stairs but I'm improving every day

Lifting: don't do it

Daily Living: Showering and washing your hair will be a challenge for several months so ensure you have someone to help you

Sports and Fitness: I changed my spin classes to Yoga and 5 months post surgery I started swimming with a kick-board and flippers.  Initially, I could only swim 50 metres but now I can swim that very important kilometre - with kick board and flippers.  My recent attempt at freestyle lasted 50 metres ... and that is OK with me.
Epigastric Symptoms: You may feel you have something wrong in your stomach post surgery and get used to the RURR RURR sounds.  It doesn't hurt, just uncomfortable

You will begin to accept your new limitations as a result of the limited respiratory reserve.  People won't realise the significance of your limitation because outwardly .. there are no visible signs.  Be positive and accept that your new way of life will not be going away.

Modify your lifestyle in order to get the best out of it.

Day 4.  First walk without oxygen.  Loaded up with Oxycontin.

Day 5.  I asked an exercise bike be delivered to my room so I can start the transformation.
Five-Eight minute cycles at a time made an enormous difference to oxygen saturation 

Day 7.  A miracle.

Week 8.  Take as many pain killers as you need to enjoy the best thing life has to offer. The pain will go away.

Grin and Bear it!

I knew early in my diagnosis that I would eventually need to have the lung removed.  But, after my last session of chemo it was all too real.  There was no turning back, in 4 weeks I would need to learn to live with one lung (45% breathing capacity).  I was told my right lung, pleura, diaphragm and maybe the lining of your heart will be removed -  Pleuropneumonectomy,  I was weak, emotional, shocked and cried uncontrollably.    Prof McCaughan handed me a tissue from the other side of the large table and said 'It's OK, almost everyone cries here on Fridays.  It's usually the day I tell the patient what I will be removing'.

As told by Jocelyn McLean, Prof McCaughan's personal Nurse, a pneumonectomy is one of a number of operations that provide the only chance of a cure for many lung cancer patients.  I don't have lung cancer.  Thymoma is very different, however, it had spread to the pleura and given it was spreading around the lung I was treated similarly.

The most important question on my mind at the time was 'How would I handle the pain?" I was told there was no bigger operation than a lung removal and to expect uncontrollable discomfort.   Looking back, post operative pain was truly uncontrollable.  If I told you it felt like having electric shocks, being branded by a hot steel rod, trampled by horses ... it wouldn't be enough to describe the level of pain I experienced.   Severe pain is the most significant factor as a result of the necessary coughing, inability to breath deeply and sigh.  Preventing pain wasn't as important as relieving it.  I was taking copious amount of Endone, Oxicontin, Indocid (both fast release and slow 12 hour release dozes).  I found Indocid suppositories to be one of the best for immediate pain relief - even thought it's used for inflammation, swelling, stiffness, and joint pain ... it worked for me!

I read extensively about the potential of becoming addicted to these drugs and the common withdrawal symptoms.  So, I took particular care and diarised every doze taken every day, time and place. Understanding how to manage your own pain is essential before you are discharged, so make sure you practice in hospital by working with the medical team and understand what tablets are to be taken when.  Don't try to be a hero and miss out on a doze .. it's not worth it.  Obtain the hospital and your case manager's phone number and call them every few days to ensure you are on top of their mind!

Finally, surround yourself with the people that love you and support you.  I was rarely left on my own and always had someone around to help me walk, shower and generally get around.  My home was my haven.

Don't be shocked by the following pictures ... if only I could have found some on the net before my operation.

One more kiss before being taken into the operating room.  How wonderful it was to take my last full breath.

ICU in Isolation - the pain was unberable

Three days post surgery - incredible recovery thanks to Oxycontin 

Swelling is normal and will last for several months.

Myasthenia Returns

Well, its been three months since I've written.  Lots has happened.  I returned to work, but after only 4 weeks I found my Myasthenia symptoms had returned.  I haven't had any symptoms since 2006 and not sure why the droopy eyelid and double vision are back.  I'm sure it's only temporary - I'm not worried.   There could never be anything more frightening than cancer.  I'm currently working through the Mestinon and Prednisone levels to determine the best ratio of medication that will result in me returning to full remission.

Myasthenia Gravis is an autoimmune neuromuscular disorder.  Noone in my family has ever had any illnesses ... so I'm not sure "Why me?".  The condition is characterised by varying degrees of weakness of the skeletal muscles of the body. Certain muscles such as those that control the eye and eyelid movements, facial expression, chewing and talking are effected.  The muscles that control breathing may also be effected.

It's an odd disorder and occurs when normal communication between the nerve and muscle is interrupted.  In Myasthenia, antibodies block/alter the receptors that send the message to the muscle thus the temporary weakness.

The Thymus Gland, which lies in the chest area beneath the breastbone, plays an important role in the immune system in early life.  The gland is large in infants and reduce to the size of a small pea in adulthood.  In my case, the gland was enlarged and in 2006 it was removed.   Thymomas are generally benign and I'm one of a rare few that somehow achieved to be diagnosed with both, in addition to Recurring Thymoma in the lung 3 years later.

The relationship between the Thymus Gland and Myasthenia is not yet fully understood and there is no correlation between high antibody levels and active Thymoma.  As far as I'm concerned, as long as Cancer doesn't return ... nothing is a problem.

Here are two photos.  One taken in 2006 and the other today! Dont worry - it's not as bad as it looks!

Eating for Recovery - What I've learned

The Gawler Foundation and the books recommended in this blog should provide you with sufficient evidence that 'food is medicine'.  If only I had come to that conclusion earlier! 

Its really simple .... Cancer is multi-dimentional and no-one really knows why one person gets it and another doesn't.  In my case, I was healthy, exercised, never smoked and ate good foods.  However, in addition to genetic predisposition and various other elements ie smoking, asbestos etc, cancer has been found to be aggravated and stimulated by inflammation and stress.  Our western diet is highly inflammatory caused by foods such as meats, fats, refined sugar and chemical additives.

To give you an example, I had three PET scans where radio-active glucose was injected intravenously.  It took approximately 60 minutes for the 'radiotracer' to travel through the body and to be absorbed by the cancer tissue being studied.  The tumour loves the glucose/sugar and feeds on it.

The basic principles are:

• Rethink your lifestyle and base your diet on vegetables, grains and fruit
• Where possible use chemical free produce.  Plants produce phyto-chemicals which are like 'natural pesticides' that stop plants from being eaten by insects. When plants are sprayed with pesticides - you will absorb those chemicals.
• Steam, dry bake, wok saute but don't deep fry.  In human history frying food is a relatively new way of preparing food. The heat of frying changes the chemistry of the fat molecules in the food. Our bodies are not adapted to take care of these fat molecules altered by frying and on a biochemical level the altered fat molecules interfere in a negative way with the functioning of the cells. 
• Keep your body Alkaline and remove all acid forming food such as meat, soft drinks, salt, sugar, jams, pastries, white breads .... refined, sweetened and processed foods!

Anti Cancer Foods:

• Cabbage, cauliflower, brussel sprouts
• Turmeric/Curcumin
• Pomegranate
• Broccoli
• Spinach
• Vegetables juices at least 3 times a day (as per the Gawler Diet)

What to expect from Chemo

I'm sorry its taken so long to write another blog entry.  I've taken up studies and it has taken up most of my time!

Today's entry will focus on how I reacted to chemo.  Don't forget that everyone is different! So, you may experience various other symptoms or maybe no symptoms at all.  Taking copious amounts of other drugs whilst having chemo is the norm. Namely to treat nausea and vomiting as part of chemo treatment.  One of the drugs administered for the entire 3 months was Demamethasone.  It is used to relieve inflammation in various parts of the body and decrease swelling associated with tumors.  However, be warned ... it increases the appetite, will cause irritability and insomnia.  I also experienced fluid retention and over the 3 months I put on approx 7 kilos.  It may not sound like much but standing tall at 160cm - its approximately another dress size!

I had 4 chemo cycles and felt quite average after each one.  Exhaustion was an accumulative effect and found myself sleeping more and more.  However, after the 4th or 5th day post chemo, the sky opened up again.  I began to smell the flowers, hear the breeze and the birds, crave healthier food and wanted to go out an exploring. This is probably the most important time to have family and friends pop by and prepare you lunch or dinner.  I could not imagine what it would be like being on your own.  I had very little energy to do anything but go out for short walks and rest.  So, be kind to yourself and listen to your body.

I didn't look forward to the 15-17th day post chemo.  That was when my body had reached it's peak again, while blood cell count (lymphocytes) had returned to normal thus time for another cycle.  Lymphocytes are a type of white blood cell that's responsible for protecting the body against bacterial and viral infections.  They are made in the bone marrow and when the blood cell count is low after chemo - infection is a high risk.  Make sure you stay away from anyone who has the slightest sniffle.

Next entry will focus on what I learned about the food NOT to eat and the importance of creating a cancer unfriendly environment in your body!

Do what you LOVE

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.

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