With gratitude comes happiness

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

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Slippery slope from here

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

Ready or Not ……….. Not

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

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The mechanism of coping

Onwards and Upwards No. 39

Hello my healing team,

I hope this update finds you well.

The last week has been interesting and quite eventful.  I started my chemo last Monday and had my second dose yesterday.  Along with taking 24 tablets, I have had to inject myself with the Velcade.  I did the self injection yesterday for the first time, and I must say, it is a little freaky given the needle is roughly 5cm long and I have to push it all of the way in!!  Given I stabbed myself without passing out, I did feel brave 💪💪.

The symptoms have been as expected and manageable.  As I sit here at 4am Tuesday morning, I can confirm that the insomnia from the steroid is back.  From Monday to Thursday, I wake up each morning feeling as though I am hungover.  I actually feel a little ripped off as I have the hangover but missed out on the fun bit the night before that creates the hangover.  I feel further ripped off given a Berocca, panadol, meat pie and a Coke slurpie no longer cures my hangover like it did 20 years ago. Only time heals.  Worst of all though is the hiccups.  They start 24hrs after taking the steroids, and continue for 24hrs, even waking me from my fragile sleep.  I feel validated every time that someone in my presence gives me that sympathy look, both of us sharing the knowledge that hiccups sucks massively!

This week, our new normal has arrived.  We have had to adapt.  I am no longer working so am trying to keep busy and remain positive.  My positivity has been challenged as I confront the ‘Why’.  Why has this crappy disease reemerged??  It has had me question and in some cases, stop pursuing those things that I have been doing to remain well including my nutrition, the health supplements I am taking, my mindfulness routine.  Why bother doing all of this if it is not going to hold off the cancer!!  But in recent reflection, I have realised that all of my actions form part of my coping mechanism.  I do things to help me feel as though I am taking control by raising my energy, connecting into my social network, doing things that strengthen my immune system.  I have to keep up my routine, I have to continue to do those small things that will help me maintain resolve and stay strong.  I have to fight for me.

My coping mechanism is important, but it is only one of the four techniques that I have observed in my house this week.  With me starting treatment again, Sarah and I felt it was time to divulge our secrets to Riley (11yo) and Georgia (8yo) by telling them I have cancer, and have had cancer for the past 2.5 years.  This undertaking has meant that Sarah and I now have to observe, nurture and manage the coping mechanisms of our beautiful young kids 🙁 . Kids shouldn’t have to deal with this shit!! However, the sad reality is that many kids do have to deal with adversity, and they do manage admirably.

We sat the kids down to host our family chat.  Riley sat with me and Georgia sat with Sarah.  When we started the discussion with “hey guys, can we have a family chat”, they knew some form of significant news was coming.  When we confessed, their reactions gave an honest insight with their coping mechanism.

Riley bounced up and down exclaiming “I knew it, I knew it”. Apparently he had been given a heads up by one of his honest little buddies at school.  Whilst he had previously been told of my cancer, I know he didn’t believe that news…….. a little like when he was first told that Santa didn’t exist.  He heard it but didn’t believe it. Riley seemed almost excited at first.  The nature of the energy that he displayed confused me a little.  Why the excitement?  I now understand that he was putting on a form of cloaking display, just like I would. He was putting his energy out there so that he didn’t have to immediately dwell.  Extrovert at his best. I do know from first hand experience though that Riley will have to manage his mind during those future quiet times.  It won’t be easy.

Georgia responded very differently.  As soon as she heard the news, it was very clear that she had no previous idea that her dad had cancer.  She was immediately sad, a little scared and I could tell she wanted to cry.  She fought to be strong and so walked away and started colouring in.  So frikkin cute and sad at the same time!!  We lured Georgia back to keep her engaged, but also let her do her thing.  Let her cope in her way.  Like Sarah, Georgia’s mechanism is to internalise and think.  She knows a lot about what is going on and will need some time to process.

Now that Riley and Georgia know of our little secret, they will openly talk to others about their dad having cancer and so they will have to manage all of those voices, opinions and the (occaisional) misinformation that they hear. Sarah and I are responsible for teaching our kids how to manage all of this information, and to help them manage those quiet voices that will occur in Riley and Georgia’s beautiful little heads.  It is not easy, but given we understand their coping mechanisms, Sarah and I can be there for them.  I thank you all for being respectful and for being there for our kids too!  They are so precious.

This week we have been reminded that everyone has their own coping mechanism.  I realise that there is no one way or right way to cope.  Whether it be extroversion or introspection, energy or reflection, crying or crowing, I understand that what is needed is a lot of love, support, space, understanding, patience and compassion.  I am not always good at embracing and implementing all of these qualities, but my promise to Sarah, Riley and Georgia is …….. I will try my best.

Take care

Geoff

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Normality. It’s a lot to ask for

Onwards and Upwards No. 38

Hello my healing team,

I hope this update finds you well.

Whilst living on a day to day basis can sometimes feel slow,  as I reflect back, time flies.  It was October 2014 that I was told that I had achieved remission. Starting on Monday, I begin a five month program of chemotherapy at the Alfred hospital to knock down my recurring cancer. As part of this first phase of treatment, I will receive the three drugs Velcade, Cyclophosphimide and dexamethasone.  The Velcade and Cyclo are the drugs that hunt down the cancer.  The Dex is a steroid that supercharges their efficacy. When I had these drugs in early 2014, the side effects were manageable, but annoying.  Nausea was occasional, insomnia only hampered me on Mondays, the hiccups started on Tuesday morning and continued until Wednesday morning, my suppressed immune system would materialise as a stye and infected eye every few weeks, and apparent I had the propensity to be grumpy.  But don’t believe everything you read……… that last bit is just hear say!!

What troubles me about all of the side effects isn’t the physical duress, but the mental arm wrestle that you have to participate in.  For the past two years I have lived a relatively normal life. One without too many side effects and without the constant reminder of cancer.  However, when you are routinely in hospital, when you look in the mirror and see that puffy infected stye eye, when you hiccup for 24 hours straight, they all serve to constantly remind you that you’re not normal and that something is wrong.  It annoys me that that is where I am headed again. I miss normal already.

This week I am finishing work for a period of 1-2 years.  This is the time that it will take for me to undergo treatment, then recover.  I will miss work.  I will miss the challenge and the responsibility.  I will miss my fabulously supportive friends and colleagues.  As I was packing up my desk, I had a poignant moment.  I was placing all of my belongings into a box and grabbed my box of personal business cards. I taped the box closed so that they wouldn’t all fall out.  As I taped the box closed, it felt like I was closing the lid on my professional identity as a business person.  It’s not normal. It hurt.

I have found a saving grace this week that has become my silver lining on the cancer cloud.  Today I have travelled to Darwin to deliver my presentation on being Empowered in Adversity.  I will also facilitate a workshop on how to Live Deliberately.  By delivering my presentation, it forces me to engage my ghosts, and explain to a room full of people how to manage adversity, how to become empowered, and encourage people to strive to be the best that they can be. By delivering the workshop, I am reminded that I need to strive to be the best that I can be.

Whilst I won’t be experiencing the normal that I have become used too, I will find a new normal.  I will endure and I will rise. I have done it before and I will do it again.

Don’t wait for adversity to strike before you consider how to be the best you can be. Start today. Embrace, love, live.

Take care

Geoff

I must recognise the tremendous support that has been afforded to both Sarah and I by our family and all of our friends.  We are overwhelmed by your response to our challenge.  Thank you!!

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