Geoff Nyssen

Onwards and Upwards No. 37

Hello my healing team,

I hope this update finds you well.

Well straight into it……… like a boomerang, it’s back. My last results in May found that my cancer was 5% in my bone marrow and had reached a steady state with several consecutive results all being in the same range. I was hopeful. Now, just four months later, it is at 25% which is the same level as when I was diagnosed. Ouch 🙁.

So where to from here?? I had a lengthy 13 min discussion with my haematologist, the Nutty Professor, where he explained that my results had gone to poo, it was time to act now, and the best option for me was to start treatment comprising of;
– Starting in the next two weeks, complete three months of intense chemotherapy where I have to inject myself with drugs on a weekly basis that destroy the cancer cells, but also randomly destroy other cells within my body.
– In January 2017, I have to complete an autologous stem cell transplant where I receive my own stem cells back after receiving high dose chemo. This is the same process I went through in August 2014, where I spent 3 weeks in hospital, was administered with roughly 20 different drugs to help me cope with the chemo that they put in, and it took me 6 months to recover from. I also lost my hair……. I know!!
– In April 2017 (all going well), I am scheduled for a allogenic stem cell transplant. This is where I get my brothers stem cells introduced so that his immune system will replace mine. This will take me 12 months to recover from. The only thing I have to say about this is…….stats indicate that 13-20% people die from the procedure. Enough said.

I am submitting myself to all of these awful treatments so that I can live, and here is the kicker, for another 5-7 years (according to statistics). It just sucks! I reflect on all of the things I have been doing to embrace wellness, live deliberately and give. I know it is worth while, I know it is the right thing to do, I know I will keep doing it…………. But in the absence of meaningful, long term progress, it does hurt.

If that read as though I was wingeing a little. Apologies. Maybe I was. But it is a pretty shitty reality.

So here I am. I am working to get my head around the size of the mountain that my family and I have to climb. I take a deep breath and ponder how I will navigate the path. I am encouraged by the fact that I have so many supportive people around me that will rally. I am encouraged by the fact that there are many people that have walked the same path and they have faired well, so well in fact that they defy the stats and are smashing it. They live with determination and hope. I will do the same.

I will continue to embrace wellness. I will continue to live deliberately. I will continue to give. It’s just what I do.

A reality check. According to WHO stats, 50% of people will get cancer. 33% of cancers are preventable. Embrace wellness. Live deliberately. Give.

Take care

Geoff

Onwards and Upwards No. 36

Hello my healing team,

I hope this update finds you well.

Watching and reading the news, and with some of the trending story’s on social media, it is pretty clear to see that Fear is prominent in our society.  I understand fear. Especially when it results in people fleeing their home. But much of the time it is propagated by power brokers or institutions, all looking to use fear in order to gain votes, air time and / or an increased income.

Now I am no stranger to fear.  It’s fair to say I completely cacked my dax the day that I was told that I had a terminal blood cancer.  Nothing that I have experienced induced more fear than being told that I only had a few years to live …………. although there was that one time when I nearly forgot mine and Sarah’s anniversary.

Fear is our inbuilt safety mechanism. It protects us in times of danger, but at its worst it is negative in so many ways. As it manifests, it can manipulate and modify behaviour, it can stun and cripple. It can drive some to participate in unthinkable acts, it can drive others to spend. Some respond by withdrawing, others respond by lashing out in aggression. Left unchecked, ultimately it can be terminal.

Fear comes in several forms. There is Logical Fear, where you have all of the information and fear is induced by the fact of your circumstance (those fleeing wars). Illogical Fear is where you feel fear in the absence of credible information, or due to misinformation. This circumstance is often propagated by others so that they can manipulate and control you for their own gain. Then there is Gut Fear, where you assess the information around you and rely on your instinct for answers.

In the few instances in my life where I have been gripped by fear, I didn’t turn my back, I faced it. In considering how I respond to my fears, I also acknowledge that others have experienced fears far more grave than mine. For me, if fear is based on misinformation, hear say, shared rumour, or if I just don’t know enough about it, then I research. I feel that if I understand it, then I know how to respond to it.  If with research, it becomes a Logical Fear, well founded and legitimate, I engage with it to disarm it.  However, most often, my research dispels fear.  If I work hard to understand it, I know I will learn to control it instead of it controlling me.  When I can control it, I can use it, it will become my strength instead of my disability.  I will kill that fear, I will kill it with kindness and banish it.

I chose this topic given that fear is so prevalent and can be used as a tool to gain power. This use of fear is just sad, especially when you appreciate the circumstances of those who live in unsafe environments, those who’s fears are Logical.  If fear is left unchecked, it has so many negative potential outcomes. Do you know your fears? Are they Logical or Illogical?  Can you control those fears or are they controlling you?  Do they manifest as your strength or your disability?

Take care

Geoff

Onwards and Upwards No. 35

Hello my healing team,

I hope this update finds you well.

This week I went to Perth to deliver my presentation to a fantastic group of work colleagues and friends.  The process has me on planes and in hotels and takes me away from home for a few days.  I reflect on why I leave home to deliver these presentations. Further, why do I write blogs, do podcasts and engage the way that I do??  In most of these undertakings, I am just talking about myself. But to what end??

You would be forgiven for suggesting that it was only to feed my own narcissistic needs. Whilst I certainly get a lot out of the experience, there is more to it than narcissism.  In sharing like I do, I choose to make myself vulnerable, so l don’t think it is just all about me.  I think I have experienced a lot, and especially of the past few years, I have learnt a lot.  On this basis, I think I have something to share.  I try hard not to push my ideas and ideals onto anyone else. More, I want to share what I’m learning because for the most part, I think it is worthwhile.  I share hoping that through my experiences, you may reflect on you, looking for an improved outcome.

When I write and present, I try to be honest and authentic. I make myself vulnerable to those who read and listen.  In doing so, I hope to target that vulnerable place in your heart. That place where all facades are dropped and all pretences are put aside. It is at that moment that you are listening to what I am saying, and honestly reflecting on things you can do to improve your life outcome for yourself and for those around you.  It is at that point, when we are both vulnerable, that the decision for real change can and will occur. It is at that point that the benefits for you, me and those around us will materialise.

There is a big upside to vulnerability. Embrace it with me.

Take care

Geoff

Onwards and Upwards No. 33

Hello my healing team,

I hope this update finds you well.

It has been a while since I posted my last update. The main reason for the gap is that I really haven’t had too much to report relating to my health and I haven’t felt inclined to update you just for the sake of it. I tend not to write unless I have something authentic to share. My last bone marrow biopsy was in May, and since this time, I am assuming that my cancer has been simmering away in the background, doing what it does, all the while I am getting on and doing what I do. To be honest, I don’t give a crap what the cancer is doing at the moment. I am too busy having fun.

My focus for the last month has been on living!! I have worked hard and I have played hard with some rest in between. Sarah, Riley, Georgia and I have taken a much deserved holiday. We have been lucky enough to come to Bali, sharing the experience with one of my high school buddies and his family. It has been an amazing cultural experience, and a very relaxing one too. We stayed in the busy town of Seminyak where the beach, bars, shops and markets are most prominent. Now we are enjoying Ubud, a slower more relaxed mountainous region where good food and pampering is a priority. Next is Nusa Lembongan where I understand that relaxation and beach activities will be on the cards. They have a dive spot there where you dive with Manta Rays!! It’s a bucket list item ready to be struck off the list. What I have appreciated the most is that I have actually slowed to the point where I can stop and appreciate the look and smell of flowers. I am grateful to have the opportunity to stop, enjoy, appreciate and absorb the many fantastic sights, sounds, smells and experiences.

Whilst I am busy living life, I am proud to say that I have starved my cancer of my attention. Cancer will always be a voice in my mind, but recently I have banished it. Exiled to being a tiny little voice with little influence over my day to day contentment. I appreciate that as it grows, the voice may become more prominent, but for now, I am listening to the sweet music of my own voices playing in my mind as opposed to the a obnoxious beat of the cancer drum.

What are the voices playing in your mind? Are they obnoxious and stress building, or harmonious and mind expanding? You do have control over the voices that gain prominence in your head. You just have to choose which to listen to and act accordingly.

Take care

Geoff

Onwards and Upwards No. 32

Hello my healing team,

I hope this update finds you well.

I am comforted when I reflect on the fact that it has been 5 months since my last bone marrow biopsy, and I have not had any significant treatment for my myeloma since August 2014. A whole 21 months.  Whilst I have been a regular pedestrian in the hospital, I feel fortunate that the treatment I receive is manageable.

Last week I had another bone marrow biopsy.  The cancer cells measured in my pelvis have gone up from 4.2 to 4.9%.  This is another pretty good result showing a slow down from the doubling in numbers that was previously occurring.  Whilst this had me a little excited, I was quickly brought to earth by the fact that my neutrophils (white blood cells that are effectively my immune system) have been consistently dropping over the past 10 months. Normally, your neutrophils would be expected to be 2-3. Mine are 0.9 which is significantly low.  We are not certain why this is occurring, however, as the cancer becomes more prevalent it displaces my bone marrow and reduces my bodies ability to produce good blood.  Whilst I am ok at the moment, if this reduction continues, my immune system will become compromised and I will be susceptible to infection. Bloody great hey!!  It seems I may be on a slippery slope towards my next stage of intense treatment.

So how do I mange myself going forward??  Whilst I am not really sure what the next six months look like, I have made one definitive decision.  I will say YES………..

I was recently listening to a TED talk given by Shonda Rhimes, a very successful TV executive.  Whilst she was extraordinarily successful, she came to a point in her career where she hast lost her ‘humm’ or her mojo.   She found she was becoming automated in what she did.  She was drawn out of this situation by her kids who were seemingly starved of parental attention.  She found that she got her ‘humm’ back by shelving her own self importance, reprioritising her life, and saying YES to her kids.  Actually, she set aside one whole year and said YES to them every time that they wanted her time. She rewired and improved her life and in turn, reinvigorated her career.

I am going to take a leaf out of Shonda’s book.  I will say YES and prioritise.

• I will say yes when my kids ask for me to come and play
• I will say yes when Sarah needs me to be present (or for a hug)
• I will say yes to initiatives that help my community
• I will say yes when I receive an opportunity to connect with people, both those I know, and those I don’t

I will say YES.

It is not going to be easy to say YES all of the time. I may even slip up occaisionally.  However, I expect that the more I say yes, the happier I will be, the happier the people around me will be, and I will use this positive energy to smooth out the challenging bumps that lie in the road ahead.

Who do you need to say YES to in order to bring happiness and priority into your life??

Take care

Geoff