Category: Onwards and Upwards

Onwards and Upwards No. 44

Hello my healing team,

I hope this update finds you well.

My recent frustrations were alleviated today when a very dear friend suggested we unlock those frustrations by going for a swim. Given I have been unable to exercise with a broken foot, this gesture was significant. It was made more significant when I suggested we swim in 14 deg cel water at Shoreham beach.  This was even more significant again given the water at Shoreham beach is seriously cloudy, on the ocean side (so prone to large wild life) and full of stringy seaweed beds.  Uncomfortable was top of mind.  Regardless, the reason why I choose Shoreham beach is because it is cold so it tests my immune strength, it is a 1.4km swim so it tests my physical strength and it finds us swimming into the unknown, the deep dark blue, so it tests my mental strength.

It is an interesting mind battle when you are swimming with little visibility.  You swim knowing that you should be fine, but can never be absolutely certain what is lingering in your path just up ahead.  I find that it is not dissimilar to my cancer experience.  I often feel as though I am walking into the dark, but I push on, taking one step after another, placing hope in the fact that I won’t step into a pothole or off a cancer cliff.

Before my buddy and I got into the water today, we acknowledged our worst case scenario in there possibly being sharks, but trudged into the chilly waters regardless.  We would tackle it together.  Secretly I felt challenged given the saying “If you stumble across a bear in the woods, you don’t have to out run the bear, only your slowest friend”!!  My friend is a far faster swimmer than I.  Bummer!!

As we swam to the first pole, some 500m away from the shoreline, we had overcome the freeze brain and were feeling good, even empowered.  We were swimming in 5m deep water and visibility was 2m.  My feet extending into the depths looked hazy.  We swam towards the second pole which was another 600m away.  We were plodding along, turning our arms over in unison. I was staring down, my eyes drawn to the changing shadows. At that moment a 4 foot long flash of silver flashed immediately below us.  Aarrrgghh (that’s me letting out a boy scream). I think I even let out a little bit of wee.  My buddy saw it too and yelled ‘swim in’!! I put my head under water. My buddy was easily going to beat me in, and I wanted to see the bugger that was going to bite me.

It was then that I saw Flipper’s dolphin brother, (I call him Rufus) finning slowly below me. Swimming 10cm from my feet, he was upside down looking up at me on waters surface. I think he was smiling at me. For the next 3-4 minutes, we were spellbound by Rufus and his two mates, the most majestic sea creatures constantly circling us, often swimming within my hands reach, with them as interested in us as we were in them!!  We could even hear the dolphins squeeking / talking!!  Frikkin amazing!! It was one of those moments when you are humbled to be present, humbled to be experiencing, humbled to be alive.

Upon reflection, I recognise that if I had not put myself into that situation that was so uncomfortable, I would not have experienced something so profound.  I would have perhaps felt more comfortable, but I would not have lived.  I want to strive to live more, even if it means being uncomfortable.  Further, what is more notable, I wouldn’t have made myself uncomfortable without the support of my buddy.  I would have found a reason to stay at home. I wouldn’t have lived.  With my last update, I received over 200 messages of love and support, each of which gave me strength. The strength to swim on!!

Thanks for swimming with me :).

Take care,

Geoff

Onwards and Upwards No. 43

Hello my healing team,

I hope this update finds you well.

Health-wise, I feel good.  My white blood cells are at their low point, so I have low immunity, but have managed to dodge all infections thus far!!  I have even managed to get outside for the occasional walk in the winter sun.  Winning!!

In the lead up to this SCT, I was made abundantly aware that statistics suggest 1 in 7 people will die from this procedure.  When first told, of course my bravado and positivity came out, pushing aside any suggestion that I could die!!  I have always believed, or knew, that I would be on the good side of those statistics!!  I have to so I can make 80!!  My challenge is that I have had a lot of time and space to contemplate. I found that the stat of 1 in 7 was keeping me awake.  I also found that I often felt emotional.  My feelings were unresolved and were playing on my mind big time. Why ……. I hear you ask??  Well if you were going skydiving (or any activity) with seven other people and you knew that one of you would die, you just wouldn’t do it!!  But here I am in the position where I have to go through this SCT.  I have no obvious alternative offering long term reprieve from this disease. The challenge is further compounded by the statistic that the average life expectancy after diagnosis is four years, a stat that becomes sadly real when you see good friends with Myeloma pass away.  Sometimes it can all become too much to manage.  It’s a tough gig!!

I knew I had to find a way to come to terms with those statistics. I mean ……  really come to terms as opposed to brushing the thoughts off with a ‘she’ll be right mate’.  In the past I have brushed it off because I am not scared of death for myself. When I die, I won’t care. I’ll be dead!! What scares me, and makes me sad, is how my dying would effect those close to me, my beautiful Georgia (8), Riley (11) and Sarah. How would they cope should I die soon. It shatters me to think……

Being honest, I really didn’t know how to start the conversation with myself, or others, on how to deal with the prospect of death. To get my head around it, I needed help…. enter my fab kinesiologist Nanette Abbott!!  After much discussion and a balance, we achieved some clarity.  When I used to imagine life post Geoff, I pictured dark clouds rolling in for all of those around me, I see crying, I see sorrow. Not trying to talk myself up :), it’s just how I saw it.  I also saw me no longer being present.  Not being there for them when they needed me. After some time spent with Nan, I have resolved that I can influence this outcome. Death doesn’t have to be all doom and gloom. Sure it will be a sad time, but I think that if I was to pass, I will still be there for the ones I love ❤.  Spiritually, I am not religious, so don’t believe the traditional ‘heaven after death’. But I do believe in the soul and energy transfer. A scenario where the soul, the source of living energy, moves out of our body, but is still present. It is in this instance that I can and will be present in the days, months and years post Geoff.  A butterfly will land on Georgia’s face and it will be me tickling her cheek. The wind will blow and it will be me affectionately roughing Riley’s hair. The sun will shine and it will be me placing kisses on Sarah’s forehead.    You will be able to see my smile on the horizon with every sunrise and sunset.

Let’s face it, it would be a bed of thorns as opposed to one of roses should the worst case come to fruition, especially for those close to me.  The reality is that I won’t be here in person, however it does provide a little comfort to think that I will still be there for them in some capacity.

Hug your loved ones tight.

Take care

Geoff

In memory of our good friend Simone who, at 38 years young, passed last week from Myeloma. Our thoughts are with Brent, and little ones Harry and Finn.

Onwards and Upwards No. 42

Hello my healing team,

I hope this update finds you well.

As I write this, I sit at the Alfred Hospital doing all of the pre testing before I can undergo a Stem Cell Transplant (SCT) which is booked for mid April.  Today, I have had a full skeletal survey, a chest X-ray, a cardiac test, an ECG and a detailed blood exam, all completed to ensure that my body is strong enough to tolerate the bad ass drugs that they are going to give me as part of the SCT. I need the SCT to bring my Myeloma back under control and to give me a chance at long term remission. When I ponder it, it sucks to think that these drugs are going to be that hard core and harsh that they need to comprehensively test the condition of my body to ensure I can tolerate them.  Crazy!!  However, I am doing all of this to live longer.

It is my perspective that my health is just one aspect of my life, and whilst it is pretty challenging, the rest of my life gives me so much to be grateful for.  I feel grateful because I have;

• Two happy kids;
• A beautiful wife who is caring and supportive.
• Had more than 1000 people attend the MY Mount Eliza Festival that was the realisation of my vision and dream.
• Been supported in the delivery of the Festival by over 120 volunteers, with most of those being my amazing family and friends.
• Through the Festival, raised over $25k for Myeloma Australia so that they can continue to support patients, carers and families.
• Shared the event with most of you.
• A couple of weeks of school holidays where I can spend fun times with my wife, kids and friends.

All of this is just frikkin awesome!!  I feel so appreciative and grateful.

I was recently listening to a presentation delivered by David Steindl-Rast.  He explained why happiness is born from gratitude. To quote him, “If you are grateful, you’re not fearful. If you’re not fearful, you’re not violent. If you are grateful, you act out of a sense of enough, as opposed to scarcity, and you are willing to share. If you are grateful, you enjoy the differences in people and are respectful.”

The way I see it, if you are grateful, you appreciate, and with appreciation comes happiness. When I stop and reflect on what I am grateful for, I appreciate what I do have (in the sense of enough) as opposed to what I don’t have.  It is at this point that I don’t focus on my challenges, I focus on the abundance of awesomeness around me!

You are part of that awesomeness.  Thank you.

Take care

Geoff

Onwards and Upwards No. 41 – Slippery slope from here

Hello my healing team,

I hope this update finds you well!!

I am happy to report that everything in my space is going well.  The positive test results that I received in January have been enough to help me refocus on living deliberately, although I must admit, our two week cruise around the South Pacific Islands helped no end also. In short, I feel good, I feel strong.

The past few months have been busy.  I have worked hard to stay well. I could have done more exercise, but am happy with what I have done, swimming and riding with my local buddies.  My diet could have been better, but I have eaten well enough.  I continue with many of my complementary therapies like kinesiology and acupuncture, and am working with a Chinese herbalist.  You may remember in a previous update that there were a lot of unpleasant symptoms that go with my chemo.  Well, I think I have been quite lucky given that I have tolerated the symptoms reasonably well, I attribute this to all of the things I have been doing to stay well.  So maybe, not all luck……..but either way, I’m Winning!

Now that I have finished chemotherapy, the next step for me is an Autologous Stem Cell Transplant.  This is the same procedure that I had in August 2014, where they give me high dose chemo to kill off my existing immune system, then reintroduce my stem cells so that they can rebuild.  It is quite daunting as I will be very unwell and feel pretty crappy for a few months.  I received the news last week that my stem cell transplant will occur from 18-20 April at the Alfred Hospital.  Arrgghh.   Having been given the dates, it really feels as though ‘Shit just got real’!!  I have known for 6 months that this was coming, but now that I have dates, and it will all happen in just one months time, it is a little intimidating.  I do remind myself “you did it once, you can do it again!!” ……. and I will.

To occupy my mind, I have been supremely well supported by friends and family to deliver the MY Mount Eliza Run & Fun Festival.  So in a little over a week, on Sunday 26 March 2017, we will host this event with a planned attendance of roughly 1000 people all coming to enjoy running, walking and a host of family festivities including:

• 5 or 10km run /walk
• face painting
• jumping castles
• gaelic sword fighting events
• BMX /skate / scooter events
• A day of live music.
• Reptile petting zoo
• Heaps of kids games and activities.
• A day of awesome live music
• Much much more

For more  information or to register to participate in the  run / walk, go to:

www.mymounteliza.org.au

The Festival is being run by myself and a group of amazing volunteers and all proceeds will go to Myeloma Australia to help them continue to support patients, carers and families impacted by Myeloma. Mileage come along to show your support!

Take care

Geoff

Onwards and Upwards No. 40

Hello my healing team,

I hope this update finds you well.

It’s has been a while since I last wrote.  I guess that I really haven’t had anything meaningful to say, or any good news to pass on.  I find that if my mind is in a whirl with all of the challenges, when I am having a crap time of it, then I find it hard to write.  It is hard to conjure meaningful authenticity when all I have to say is crap, crap, shite shite, help.

Six months ago, I really thought I was prepared for the eventual relapse.  I was flying along, numbers slowly increasing, but generally feeling strong enough to handle anything.  I now know that I wasn’t ready. I wasn’t ready to give up my normality and routine of work, family and socialising.  I wasn’t ready to go into a program of self injecting drugs that make you feel really unwell for days on end, and nor was I ready to accept that my prognosis of 10 years was now statistically 5-6 years given the relapse.  The reality is that I was never going to be ready for that.

The greatest challenge with relapse is managing the mind game.  All of a sudden I find myself in the position where there is no certainty.  My treatment plan has me on low dose Chemo until March, then in April I have my first (of two) stem cell transplants. The uncertainty arises given no one knows whether any of the treatments will work.  The uncertainty breeds fear, the fear breeds anxiety and the anxiety mess’s with your head.  Tough times.

Over the last few months, for the first time since diagnosis, I have spent a lot of time thinking about death.  It comes with the anxiety.  We all know that with each day we get one step closer to dying, but the reality for most is that they picture themselves having passed away, laying in a coffin with grey hair, many wrinkles (except for those that Botox), and a full life of fun and love behind them.  I just want the same thing. But  the likelihood of this eventuality is tested when anxiety creeps in, when the uncertainty and disempowerment imposes its will.

Yesterday, I was given some reprieve.  I have recently had testing done, through bone marrow biopsy, and results indicate a 50+% drop in cancer levels.  The Myeloma has gone from 20-30% to <10%.   phew.  It is a great relief because it means that the drugs are working, and it validates the last few months of weekly injections.  Really, it makes all of the ‘feeling crap’ OK. I can now compartmentalise the feeling of uncertainty and I can feel myself becoming empowered again.  Aaaaarrrggghhh. All of a sudden I want to be active again.  I want to keep doing good things!  I want to strive into my 80s!!   I will continue my journey Onwards and Upwards.

Are you coming with me???

Love to all

Geoff

Oh btw – a fab group of friends and I will deliver the Inaugural MY Mount Eliza Run & Fun Festival. It is in support of Myeloma Australia.  We want you there to run, walk or just be present.  We really need people to register at .  Go on….. do it for me :).  Thanks