Thursday, 15 September 2016

How my Husband is Beating a Brain Tumour

I'm a compartmentaliser; which means I keep aspects of my life separate ... in little compartments.  My blog & IG is one little compartment kept for me and my sewing obsession.  My personal life is another compartment and my work life (which I am giving up to devote my time to caring for my family) is another compartment.  The compartments don't cross over and I am very comfortable with that.

This post is so far out of my comfort zone it isn't funny.  So why am I doing it? 

Well, my Husband is a Super Hero and is beating a brain tumour that has killed most people in 3 - 5 years.  The reason I'm sharing is that if his story can help one person, one person who is the whole world to their loved ones just as he is to us, to survive then it is worth all of the discomfort it causes me to write this. 

In April 2013, after months of mini seizures, my Husband was diagnosed with an Oligodendroglioma brain tumour.  His GP (General Practitioner Doctor) discovered it from CT and MRI's which were conducted because his Father had died from a brain tumour 11 years prior.  We saw a Neurosurgeon which the GP referred us to, who confirmed that it was a tumour and it should be removed.  I didn't have a good feeling about that doctor and I've learnt to always go with my gut feeling... I'm never wrong!  So I looked up Dr. Charlie Teo who is based in Sydney and has a reputation for being one of the worlds leading Neurosurgeons.

Now you can't just make an appointment with Charlie (yeah, we just call him Charlie).  He is in such massive demand that you have to send your MRI and he determines if you're a suitable patient in need of his skill.  I sent the MRI with a pleading letter and called everyday to follow up.  Finally, his very tolerant staff told me that Charlie had left a note on my Husbands MRI saying "Book for immediate consult and surgery". Okay.  So it was bad enough to warrant Charlie's attention. 

In fact, the tumour was 6 cm x 4 cm x 5 cm.  That's a big tumour! 

We had an initial consult with Charlie who told us all the in's and out's.  The risks and benefits of surgery, and then asked us what we wanted to do.  I answered for us both, saying that it needed to come out! Charlie said he was happy to hear that as he had booked a surgery for 6 am the next morning.  This was happening!

At the time our daughters where 17 months and 2 months old.  Sure, it was stressful (the biggest understatement EVER!) but it was also a blessing.  They were too young to know what was going on. 

In the interest of this not being a massive post, I'll skip over details and say the surgery and his recover went well.  If anyone you know has had brain surgery you know how debilitating it is and how slow the recovery is.  The post surgery biopsy revealed that it was a grade 2 / grade 3 tumour.  Grade 3 means cancer. 

Getting the news from Charlie that people with this type of tumour had a life expectancy of 3 to 5 years stopped my world.  My blood ran cold.  I retreated so far within myself that I felt like I was having a nightmare.  3 to 5 years.  Our beautiful daughters were babies.  Would they not have their Papa for long?  Would they grow up not remembering him?  How could I parent without him?  Without my anchor, my rock.  What would I do without the love of my life?  Why is this happening to our beautiful innocent girls who need their Papa as much as I need my Husband?

Charlie said to me "you need to make plans accordingly, you can't just bury your head in the sand".  The comment wrenched me from my sleep more times than I can count.  I would hear Charlie's voice in my head, clear as a bell for a long long time, saying "most people live 3 - 5 years.  You need to make plans accordingly, you can't bury your head in the sand".  Again, and again, and again.

Out of nowhere I asked Charlie if there was anything we could do.  He had already explained that life expectancy was not improved by chemo or radiation, in fact, studies were showing that those treatments CAUSE secondary cancer.  Charlie casually mentioned that a patient had shown him a YouTube clip about the Ketogenic Diet to fight cancer and the science they talked about was true science, so we could give that a go.

Something on YouTube?  What?!  But if anyone knows, Charlie knows.  So we gave it a go.  A BIG go!  This link was my first go to... there is a sea of information out there for this diet... most of which is NOT helpful. 

2 months later we had a follow up appointment with Charlie, during which time his wife had been diagnosed with breast cancer (I'm not sharing his personal information, he has spoken about it on Australian TV). She was on the Ketogenic Diet to fight her cancer.  He was no  longer talking about it in an off hand sort of way, he knew all about it and was advocating it hard.  Think about it, if it's good enough for his beloved wife to be on to fight her cancer, then it must be good!

The brain tumour is being beaten with diet.  It's so simple it seems too good to be true.  Sugar/carbs feed cancer cells, by depriving cancer cells of their food source they die.  Healthy cells can thrive on carbs or ketones, so by being on a Ketogenic Diet you are only feeding healthy cells.  This is true for all forms of cancer.  The diet is not widely supported by the conventional medical community, and certainly not by drug companies as there is no money to be made in cutting out sugar.

My Husband takes large doses of Turmeric (pure & ground into capsules); Charlie said that his research team had proven that Turmeric kills cancer cells and his wife was also taking high doses.  We buy it from Herbosohpy.  My Husband also chews on raw ginger (which is very much an acquired taste!) but is reported to have significant health benefits.

Our girls still eat fruit and grains etc.  I do not feed them refined sugar (the occasional bit of birthday cake not withstanding) as there is absolutely no need for it in a healthy diet.  All of our main meals are ketogenic and I love it!  Our blood sugars and cholesterol levels are healthy.

Most people with the same type of brain tumour have a recurrence within 12 months.  It has been over 3 years since my Husband's surgery and he has had no recurrence.  He has not needed another surgery, has had no chemo or radiation.  At last MRI my Husband still has "something" there.  It could be scar tissue or low grade tumour, Charlie can't be sure without surgery.  Either way, he is kicking the butt of the odds and we (Charlie included) could not be happier.  He is 3 years post op and is healthy.  I thank God for that everyday! 

I am not an expert on the Ketogenic Diet.  There is a formula for each individual to work our their carbs per day.  We don't do that, we just go as low as possible.  There are also urine tests to asses your keto level; my Husband was doing that but didn't continue as the MRI results were proof enough that it was working.

If you have any questions about what we eat on a daily basis, please let me know.  As I said, I am not an expert, I am simply the wife of a Super Hero who is beating a deadly brain tumour thanks to the Ketogenic Diet and the Grace of God.

February 2018 edit: Due to administrative overspending at the Cure For Life charity, Charlie has started his own charity (go Charlie!!).  Please support the dream of a world free from brain cancer at the Charlie Teo Foundation.  Charlie's vision is "a world free from brain cancer" with a mission "we can and MUST do better".

Thank you.