Cancer is never a word you want to hear. What does a chondrosarcoma of the brain even mean?

This article is a synopsis of what happened me in 2017.

I hate to spoil the surprise for some of you, but I lived.  Dark humour has helped me navigate some very difficult situations in my life.

!! Warning !! this article contains some images which may upset or disturb.  I share them for those who need to see. !!

I hope for anyone going through similar circumstances or having a loved one in a similar situation my story might help or offer some hope of what could be to come.

If you want to get in contact for any reason please do.

• Innocuous beginning
• The core of the matter
• Getting my head around it
• 15 minutes in the microwave should do
• Thank yous

 

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Innocuous beginning

Coming into this

In December 2016, I was 39 years old and a bit over weight.  My wife Emma and I had just had 2 dogs come into our family to join the cat.

Little did I know that within 4 weeks of the new year my life would pull the hand brake on me.

If you don’t have health insurance.  Stop reading this article right now and go get some.  I’m with VHI and none of this would have happened without them.  The removed 50% of the problem and have been seamless to the entire process.   I’m so so so glad I’m with VHI.

 

When you start your own business, you and your partners are under a lot of stress, continuously.  You often feel that you’re responsible for everything in the business.  In order to get the ball rolling you do more than you probably should but you do all you can.

Bringing that stress home is something you do and turning off just isn’t possible. I was one of those.

The optimism of entrepeneurship to me is that I can accomplish anything I set my mind to.  If there isn’t a way I will make one : Aut viam inveniam aut faciam.  This blog is the epitome of that spirit.

Sometimes however Mother Nature gives you a little push to remind you there are other things in life that are more important.  In my case, a very swift kick was required and it hurt!

 

Bit of a late one (Feb 2017)

On the 7th of February 2017 at 01:00 in the morning I was still at my desk programming.  Late ones were not uncommon.

This particular run was for a client who we were pushing the boundaries of the capabilities of our platform for and I was not going to let it fail.

I was getting ready to wrap up.  Leaning back in the chair I felt a click in the back of my neck as you do when you stretch.  Suddenly I got pins and needles down the right side of my face and a blinding headache.  Having been a former scout leader with some first aid training, my brain went into immediate scout mode… what’s happening?  Stroke?  So all the FAST checks were done.  Face… tingling but not devoid of muscle control.  There was no arm weakness.  I headed to the bathroom for a conversation with myself to check my speech.  Time to call?  Nope, not me, I’m of the “make sure I’m dying first” gang before calling for help.

After 20 mins of being rather unwell and with a blinding headache I wrapped up the shop and started the 25 minute drive home.

I didn’t sleep a wink that night as the migraine totally upset my stomach and even putting my head on a pillow hurt.  Sleeping upright on a chair is a lot harder to do when you can’t rest your head on anything.  I don’t recommend it.

Come 7am my dear wife Emma had had enough.  We’re off to the hospital.  I’d had migraines before but this was new.  I was too tired and worn out to argue.  Off we set.

 

Doing the rounds (Feb 2017)

Off to the Swift Care clinic in Swords was a quick referral to hospital.  I have a far greater understanding of the suffering of people who get travel sick.  A cardboard kidney dish is not your friend in transit.

Into Mater Private who didn’t have beds or a specialist available so had to immediately leave A&E there and over to Blanchardstown. Some more driving and now almost 12 hours of solid pain.

 

In the car outside Connolly hospital my neck clicked again and the tingling stopped and the headache subsided somewhat.  “Any chance of going home?” I asked sheepishly.  The look I got from Emma that when two people know each other long enough, her stern look said enough.

I was seen mercifully immediately in Blanch and transferred to the Acute Injuries department.  A couple of basic metric gathering tests were done and then I was off up to radiology to go through some more detailed tests.  Cutting a long day of stories short, I was sent for a CT scan of my head and then an MRI.  Computed Tomography and Magnetic Resonance Imaging.

Grand I though, a few asprin, a bit of bed rest and I’ll be grand I thought to myself on the walk back to the ward.

When I got back into the ward and Dr. Wanik under Dr. Bhatti greeted me the second I came in.  I knew something was “up” as I was immediately sent back for a higher level scan with the line “I’ve spotted something in your scan we need to check”.  After repeating to me what felt like exactly the same process I came back to the ward and once again Dr. Wanik greeted me

“Please sit down Mr. Lacey I’m afraid I have some bad news.”

The clocks on the wall stopped I’m sure of it.

“You have a lesion on your brain.”  Right so!  I take it that’s not good?!

 

Immediate aftermath (Feb 2017)

So that night I got to stay in a very well catered hotel… called Connolly Hospital.  My scans were sent to Beaumont the cranial specialist hospital of Ireland.  Dr. Wanik informed me that a review of my scans would be back in the morning.

When you’re sick creating a family WhatsApp group is incredibly helpful.  It allows you tell a lot of people what’s going on at the same time without having to report your story many many times.  It also removes the effect of chinese whispers which can elevate situations.

Dark humour can address a lot of ills at a time like this.   If they have to do brain surgery, and they get it wrong, I’m going to be in a bad way.  So better write down all my thoughts and notes for people, as I may not remember them.  All this goes through your head and there is a grain of “it could” in there.  When asked which ward I was in my family replied in “the vegetable garden?!”

 

My case was referred to Mr. Daniel Rawluk.  I was sent home with an appointment for the following day.  I was given a copy of my data to bring with me in an open envelop and a DVD of the scans.

When a nerd gets a DVD there is only one thing he’s going to do with it.  I’ve never seen a report with more “oma’s” in it.  This isn’t good I worked out for myself with the help of Google.  I’m facing down the big C of cancer.  Suddenly everywhere I look everything is cancer, cancer, cancer, cancer, cancer…

That lump is over 4 cm across, the size of a golf ball behind my right eye.

Differential diagnosis for this lesion includes chondrosarcoma, chordoma, chondroid chordoma, rhabdomyosarcoma and metastasis. Further evaluation is indicated including neurosurgical review.

 

The core of the matter

Meeting a rock star

Mr. Daniel Rawluk is a rock star.  His is everything you could hope to meet in a someone who you need to trust.

He is quite literally my life saver.

Cool, calm, collected, insanely knowledgeable and just so together.  Your world is falling apart and this guy puts world’s back together.

We had one set of pictures of the inside of my head so two big questions loomed.  What is it and is it growing or not?

We have to give it time to grow.  Uh oh, you mean I’m not getting out of this today?

6 weeks and take lots of paracetamol and ibuprofen to manage the headaches.

The plan is for another MRI scan to gauge the growth.

 

 

How a support network should work

My family and family in-law rallied and were all in touch and I had some very comforting visits.

People genuinely don’t know how to react with that kind of news.  When you have not much information to provide and you’re a bit worried for yourself, there ends up being a lot of cups of tea and conversations that tangent back into banal topics.  It’s truly surreal.

My business partners Nick and Chris were incredible.  I’ve never felt more supported and helped when it was just… drop it all… we got this, go get better.

Being unable to see straight with pain meant I got to know my neighbours a lot better as I wasn’t going anywhere.  I also got a lot of movies watched.

 

Fast forward 8 weeks (May 2017)

Back in to meet Mr. Rawluk and a more positive outlook.  The pain was still there 8 weeks later but hey…

I’m no biologist but I know enough to know there’s a bit of a problem when you get a lump.  The standard procedure apparently is to cut a bit off, test it and figure out what it is.

If however that lump is inside your brain getting to it to cut some out is a lot harder to do.  So you need a rock star neurosurgeon.

I was introduced to a new technical term I’d never heard of before.  A Schwannoma.  A bunch of errant nerve cells.  Benign (not growing) usually.  Some good news!!!  I clung to it being a Schwannoma as everything else was just so much worse.  I was then given a guided but biggest choice of my life.

I’m paraphrasing but “Do you want to wait to see what happens or do we schedule surgery to dig it out?  I’m going to have to remove part of your brain so I can get into it.  Surgery comes with risks so you have to choose.  This is significant surgery.  What do you want to do?”

I elected for surgery.  Holy (insert many expletives here)… this just got serious.  Still 6 week post surgery recovery and I’m better.  I can do this! PMA all the way.

 

Getting my head around it (Jun 2017)

Intensive care unit

I got a lovely bed on my own as apparently I had a variant of MRSA up my nose.  I was kept well away from everyone else.  It’s so nice to be treated special.  My first time experiencing first class.

I was hooked up to a full suite … heart monitor, breath monitor the full works.  Surgery scheduled for the next day.

Next day came in and I just couldn’t comprehend what was happening.  I compartmentalised everything.  I was due in in the morning but Mr Rawluk was held up a bit that day with an emergency that had to be rushed in ahead of me.  I’ll wait for my rock star thanks.

There is always someone more important who needs a rock star.  I had no problem waiting.  I’m lucky to be here at all.

Laughing and smiling and joking with anyone willing to say hello to me I was wheeled into waiting.  I met a lovely lady just before I went in for my surgery.   After shaking his hand I was led to the anesthesiologist. I was put in a crucifixion like pose as the arterial line was put in.

That is the closest to death I think I have ever come.

The ceiling neon lights faded to black.

 

That kicked like a mule

I groggily next remember it being 2am and I really needed a bathroom.  When you’re a bed with legs raised and head raised and unable to roll over urinating into a bottle is exceptionally difficult.  The kind nurse on duty removed my undergarments with a scissors to save me the discomfort of moving.  Not my finest hour.

Did anyone get the licence plate of the truck that hit me??

After a short few days I returned home and the process of getting over some pretty serious brain surgery.

The contents that were dug out were sent off to Blackrock for analysis to figure out what was really in there.

In the photo on the right yes that is a brain drain!

I’ve heard the old expression “chicks dig scars” but I’m not sure I got this one quite right.

 

 

 

 

Ready for round two Mr. Lacey? (Aug 2017)

Needless to say recovery took more than a day or several.  That hurt.  Still, we’re all good … yeah… yeah….

I’ve heard the expression “for someone to be inside your head” but have it literally happen is quite different.

It took 3 weeks for analysis to come back when I experienced what a break in communication can really do to a person.

I got a phone called from the Hermitage Radiology department scheduling when I’m to be booked info a consultation with a different doctor, Dr. Osama Salib who works in Radiology!

I had a meeting with Mr. Rawluk the next day and the news was not what I’d hoped for.

 

So it was cancer?

The lump in my head wasn’t a Schwannoma.  It was instead a Stage 2 Chondrosarcoma which was malignant.  We are back to cancer, cancer, cancer, cancer…

The reason it took so long to diagnose is that it is a rare cancer to get in the head.  Usually found in cartilage in elbows and knees apparently I just had to go and be different didn’t I.

 

Slow growing but it was growing back. If I did nothing with it, the lump would grow back and I’d be dead in 6 to 12 months.

Now where the cancer was in my brain it was right beside my brain stem and wrapped in my trigeminal nerve and around the carotid artery.  All of which making it next to impossible to get out.

Instead of it being a nice squishy Schwannoma which could be easily hoovered out, it was actually like concrete which needed to be chipped out.  During the surgery the carotid artery was nicked and I needed massive blood transfusions, so what was a 2 hour surgery became a 5 hour.  What a rock star Mr. Rawluk is. Seriously… amazing guy and so humble to meet in person.

However now I needed radiation therapy.

Whatever remained needed to be cooked out using ionising radiation.

As the picture implies… well here’s another fine mess you’ve gotten us into it… as the cat photo bombs me.

 

15 minutes in the microwave should do

Meet the rocket scientists (Aug 2017)

The Radiology department in the Hermitage are quite simply superb.

Their understanding and ability to treat cancer is amazing.  That they took time out every morning to talk me through what I had questions on was such a comfort.

 

The doctor at the head of a 7 person strong team working on my plan was the consultant radiation oncologist Dr. Osama Salib with Mr. Rawluk also consulting on the plan.

If you ever needed a reason to study science in your life, meet these guys.  Inspirational life savers the lot of them.

 

 

 

New free head gear (Aug 2017)

They had to come up with a plan to cook out the bits in my head without cooking my entire head.

I needed some kit.  Specifically a head mask to keep my head very still when I’m being shot.

That is hard plastic in that image.  Initially heated up it’s then pulled gently down over your face so you end up with a perfect mould which sets hard.

A bit of physics

So you would have possible heard of Rads. A rad is the little click you hear on a Geiger counter in movies.

The metric system doesn’t use Rads, it uses Greys.  There are 100 Rads in a Grey.

Now cells can take some radiation and be fine.  The sun or going for an x-ray for example are perfectly within the capability of your body to handle.

A normal human body can absorb 1 grey to the whole body in a day and would be very sick.  Take 10 greys to the whole body and you’re dead in 1 to 2 weeks.

 

Physics applied to me

So over your entire life, a cell can take 50 greys before it dies. My cancer required 70 Greys to kill it.

This is the really “challenging” news.

If all the shots were in a straight line, for this much radiation, everything on the line would die.

Instead imagine an X.  On both lines everything in the path takes 10 greys.  At the point they cross over, it takes 20 greys.

So imagine an asterix * the central point takes a ton of greys whilst the surround lines take much smaller.

This is how they shot the cancer.  The plan Dr. Salib and the team agreed on had 73 different paths.

You can see the paths as blue tubes in the image here.  The yellow dot in the middle is my right eye, so they’re going around it.

 

When it pings take me out… I’m done (Sep and Oct 2017)

On a 5 day on, 2 day off basis for the next few weeks I visited the amazingly compassionate and understanding team in the Hermitage Radiology department.  Cancer is most definitely their specialty.

The process of IMRT took about 20 minutes of lying very still and trying not to think too much.  The team are so professional yet compassionate, I’m full of admiration for them.  There were cases far worse than mine all around me and that’s saying something.

I met Michael Walsh most mornings and I ended up looking forward to chatting to him and for a brief moment forgetting why I was there.  If I meet Michael in subsequent follow ups even to this day he always has a broad smile and a warm handshake to share.

Always smiling, always listening, always compassionate, always amazing.  They had me up on the table every morning as soon as they opened for business.

At the end of the IMRT process the team was going to give me a big dose using something very science fiction sounding called a Cyber Knife pictured here.  That was a longer process which was an hour per visit but only 4 of those visits were needed.

 

I spent my 40th birthday sick as a dog.  So much for a big party!  Priorities.

I got through the treatments but radiation sickness isn’t fun!  It’s a lot better than being dead though.

When your treatment course is done its rather strange.  You’re just done.  It hits a brick wall.  Off you go, get better, we’ve treated you.  This isn’t a criticism it’s how the process works and the paperwork that the centre supply warn you of the emotional effect of this and offer advice on how to mitigate it.

 

Watch out for the kicker

In Nov 2017 I literally was sitting on the couch going what just happened and feeling dog ill.

I had thought I was on the final trip to get better when boom my balance went.  Turns out an edema is a swelling and I probably had one in my head.

Not to worry, I’ll live with it and it’ll go away on it’s own.

More waiting.  Ok, can someone help me down the stairs please.

 

Heroes in your own back yard (Nov 2017)

I live in Ashbourne, Co. Meath and our local practice is the Ashbourne Family Practice.  There’s a doctor there called Dr. Stephen Murphy.

 

Dr. Murphy helped me understand what was going on with my body as it recovered and explained in calm, practical rational ways what my body was going through and what it does to the mind to deal with all of this.  I’ve never been more impressed with someone who simultaneously

• Runs their own business and manages a good operation that is appreciated by all
• Is so widely versed in medicine and yet accessible by joe public
• Whose communication skills are second to none (and I’ve met some amazing communicators)

Whilst Mr. Rawluk was a rock star to do such intricate, delicate and skillful surgery and Dr. Salib the genius scientist playing with radiation, Dr. Murphy was the human practitioner who really really made the whole thing something that could be emotionally dealt with.

There is so much I owe in my life to this man and his competence.  Legend!

 

What next

So after almost a year of medical process my life is different.

I have to sit and watch and wait to see how my body handles some scarring.  There’s some painful nerve damage which just takes time but nothing impossible.

All the motor skills and memories work exactly as before.  I got so lucky I had such skillful technicians looking after me.

I am ready to “embrace your new normal” which was reiterated to me throughout the entire process.

No one escapes the emotional aftermath of something this big without a scratch, so I learn to deal with it all.

For me, writing helped more than talking.  It was like I was telling someone else’s story.

Strong positive mental attitudes and kicking your own ass to try harder does help though when you’re going through the rough bits.

Health insurance made this whole thing survivable.

I personally have a strong faith which I have heavily relied on many times and it has gotten me out of some very deep holes.

So I’m back to it.

I had a life before, now it’s time to take stock of what’s changed in a year and build on what I have and don’t have.

 

Thank yous

Family

I would not have tried so hard if it wasn’t for my wonderful wife Emma, my incredible parents and fantastic brothers their partners and my nieces and nephews.

Courage is doing something even though it scares you.  Emma held my hand through it all and my brother Graham drove me to radiation therapy more often than not.

My in-laws and extended family were never more than a message away and helped life to pass as if nothing had ever happened.

My cousins were all in touch and supportive and had such lovely messages of support.  Whilst I’m part of a small family, it’s small but perfectly formed.

 

Business

My fellow directors and friends for over a decade made life so much easier.  They were supportive and understanding.  They kept the business running seamlessly without my input.  Which is a testament in itself to how well the business was put together and the skill of the team working there.  People stepped up and managed superbly.

They never pushed or pressed or made situations complicated and I will be forever grateful for that support. The whole team all kept in touch and sent their frequent regards.  When you’re isolated by illness contact means the world.

What was even more heartening were the messages and understanding from clients.  Really big hearted clients reached out and kept in touch and I’ll be forever grateful for that compassion and care.  In business you don’t have to care but when you do its a different world.  A caring world.

 

Medical profession

I’ve mentioned above a few of the leading stars in the amazing tale to whom I am so grateful.  I didn’t include the names of those from the support staff, especially the radiology team in the Hermitage who made every difficult morning that little bit easier. https://www.hermitageclinic.ie/services-specialities/clinical-departments/radiotherapy-department/

Thank you to all the people who’ve dedicated hours of their lives to studying and solving cancer.

I am amazed that people choose to follow a profession that has in it such pain and suffering and by their choices they alleviate some of that suffering.  Thank you.  Thank you more than you will ever understand.

 

To all

Cancer is not a death sentence any more as I’m living proof of thanks to modern medicine

Thank you for your prayers and messages of support.

They mean the world and are very very much appreciated.  I’ll be in touch personally to say thank you.

Right where did I leave that life… I better get back to it!  I’ve a year of catching up to do.

If you want to get in contact for any reason please do.

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