Geoff Nyssen

Onwards and Upwards No. 31

Hello my healing team,

I hope this update finds you well.

As I navigate my cancer journey, and reach out to people as I do, I often encounter people who say to me “you are so positive” and go on to describe how “being positive helps you overcome your disease”.  For me, it is nice to receive the compliment and it’s nice to see that others recognise my forward looking approach to life. However, when I think about positivity, it’s not all that it is made out to be. In my opinion, positivity can be a facade. You can easily exude positivity in front of others, and they will believe it, especially if they don’t know you well. You can wear positivity like a jacket, only for it to be stripped away when you are by yourself and vulnerable to the negative voices in your head.  On this basis, I wonder how beneficial positivity really is?? Whilst I acknowledge that being positive helps, will it really help me overcome my disease?  I don’t think it will………

Belief is what I rely on to get me over the line.  Belief is not a facade for others. It is within your core. It is part of you that can be tested, but not easily stripped away. If you truly believe, whilst the demons are screaming at you in your head, you can be unwavering in striving towards your goal. So what do I believe??

• I believe that I am doing the things necessary to help my mind and my body to fight cancer.
• I believe that I have the right people around me to provide love, support, sage advice and knowledge.
• I believe that I can overcome the challenges that come before me.
• I believe that I will live deliberately, achieve my goals and complete my bucket list items (only to make another bucket list).
• I believe that I will live into my 80s.

Belief by definition is the acceptance that something exists or is true, especially without proof.  I have acceptance that I will overcome my disease, even though there is no definitive proof.  In time, I will be the proof.

Do you believe you will achieve your goals??

Take care

Geoff

Onwards and Upwards No. 30

Hello my healing team,

I hope this update finds you well.

There is not much to report at the moment on the health front other than all is going quite well. Fatigue proves limiting, but I am thankful that it is manageable.   Last week,  I was talking with my amazingly supportive sister in-law, Corinne.  We were on holidays in Sydney and preparing for my youngest brothers wedding.  We were talking of how I juggle my time and my priorities and I reflected that I often feel guilty about how I manage myself, my time and my priorities.

Since being diagnosed with Myeloma, I have had to look at all aspects of my life and implement much change.  This includes my diet, my priorities, my daily routine, and especially, I changed by adopting a deliberate approach to life.  I have made these changes so that my mind and body is at its strongest to fight the cancer, and so that I give myself the best chance of living to the happy age of 80. However, occasionally I lapse. I eat crap food, I don’t exercise enough, I get distracted from my priorities, I fall back into my old ways, I relax.  When this happens, whilst it is normal for all of us, I feel guilty.  That feeling of guilt, can materialise as anxiety, with a shortness of breath and a knot in the belly.  The reason why I get that feeling of guilt is because if I am not constantly doing everything possible to stay strong, I may not get to 80.

Guilt and the associated anxiety can be detrimental.  In the past, there has been times when I have been overwhelmed by it and it has stopped me in my tracks.  Now, I treat guilt in a similar manner to all of my other challenges.  I acknowledge the feeling of guilt and I expose the way it makes me feel.  I talk about it to those close to me, after all, a problem shared is a problem halved.  Also, by sharing the challenge, I get to test whether the guilt I am feeling is justified.  If it is not, then I can brush it aside.  If the guilt is justified, then I treat that feeling as an alarm bell.  An alarm bell that wakes me from my assumed comfort, and reminds me that if I want to live to the age of 80, I cannot relax.  I have to eat well and exercise, I have to prioritise my family, I have to live deliberately.  I must stay strong.

Do you feel the anxiety of not doing enough??  If so, acknowledge it, share it with those close to you to test if it is real, then act.

Take care

Geoff

Onwards and Upwards No 29

Hello my healing team,

I hope this update finds you well.

It has been a relatively busy couple of weeks for me.  Following my last bone marrow biopsy result, which was quite positive, I had a bone scan. The scan was to assess whether there were any tumours in other bones away from the biopsy site. This week, my Doctor – the Nutty Professor,  sent me a simple text with the message “all clear”.  Well said Nutty!! I couldn’t have said it better myself!  Although my numbers are rising slowly, I have no hidden tumours, so it’s time for living.

Back in 2014, after my stem cell transplant, I set myself a goal to share my experiences, learnings and thoughts as far and wide as I could so that I might inspire others to embrace wellness and live deliberately.  I set this goal because of the simple statistic that 50% of the population will be diagnosed with cancer at some stage in their life (according to WHO)!!  Whilst this stat staggers me, I am reassured by the fact that 1/3 of all cancers are preventable. I want to inspire as many people as possible to strive to modify their lifestyle so that they can fall on the right side of that 50% by making changes that will help them prevent cancer and other diseases.

This week I have had the chance to realise that goal again as I was invited to Brisbane to deliver a presentation to nearly 400 people, talking about how to become empowered from a position of adversity, and how to embrace deliberate living. I am always a little nervous before talking. It is quite hard to put myself in the position where I am totally vulnerable, talking intimately of the challenges that my family and I face.  However, as has always been the case, I was warmly received and the feedback given to me was abundantly positive.  I am making a difference. It is an amazing feeling.

As I am confronted with a terminal disease, I occasionally think about how I want to be remembered when I pass (after I turn 80). What will be my legacy.  Some of the things I want to be remembered for include:

• Being a caring father and husband.
• Being active within my community by connecting socially, being a good friend and supporting those around me to be the best they can be.
• I want to have contributed to society in a meaningful way, both in my career and in support of the charity organisations that I believe in.
• I want to have provided support to those who experience adversity, and conduct myself in a manner that demonstrates to those people that you can become empowered, embrace change and live deliberately when times are difficult.

I believe that if you can articulate your legacy and work towards it, you are more likely to achieve it.

What’s your legacy???

Take care

Geoff

Onwards and Upwards No. 28

Hello my healing team,

I hope this update finds you well!!

Today I received my latest bone marrow biopsy results from the test I had in mid January.  This test tells me the percent cancer cells in my bone marrow. Ever since I relapsed, the cancer number has been steadily growing.  Eight months ago, my result was 1.6%, then 3.8% only four months ago.  Given it has been effectively doubling every 3-4 months, I was expecting a result of 7-8%.  As suggested in my previous update, with the numbers increasing, I move closer to a time where I have to make hard decisions relating to my treatment and wellbeing going forward.

My result is 4.2%.  This represents a significant slow down from where I expected my numbers to be.  Yee har!!  This means that ‘decision day’ has been delayed. It means that I can continue to live a relatively normal life.  It may even mean that my body (and my immune system) is learning how to deal with the cancer………but I don’t want to jump to any rash conclusions too quickly.  It means I can stop, take a deep breath, hug my family, and enjoy my time.  I LOVE TIME!!

The way I believe that I am going to beat this cancer is by living deliberately.  By not settling for comfortable mediocrity.  I need to continue to look towards improving myself, with a clear focus on improving my immunity and my body’s ability to heal itself and fight the cancer.  My good friend Enzo reminded me of all the things that I do to continually inspire myself to strive for improvement.  I have summarised them;

• I read information from new and varied sources.  I don’t believe everything that I read, however if the author describes an idea that has merit,  I give it a try to assess whether it suits me.  If it does, I implement change.
• I watch programs or inspiring footage of people doing amazing things, whether that be something as simple as a kid conquering his fears, or a person learning to walk again after being significantly injured.  I know that the ability to do amazing things comes from hard work.  They inspire me to work hard and persist.
• I love watching informative clips.  Programs like TED talks where people thrive in adversity inspire me to be better.
• I talk with those around me.  We share ideas, and whilst I don’t believe or agree with everything that I hear, I ponder it and consider how different ideas can help me to be better.

Although my result today is positive, the numbers are still increasing.  I cannot sit still and rest on my laurels in a state of comfortable mediocrity. I have to seek the life changes and implement routines that will have me here until I am 80.

Finally, thanks for all of your kind messages, all of your fingers that were crossed and your gestures of support.  It is why you are in my healing team.

Take care

Geoff.

Onwards and Upwards No. 27

Hello my healing team,

I hope this update finds you well.

Although it has been relatively quiet, I have a few things to report on the health front.  Sarah and I recently took the opportunity to seek a second opinion from the (arguably) second most recognised Myeloma haematologists here in Melbourne.  Whilst I was a little hesitant to step outside of the shadow of my current haematologist, (the Nutty Professor) who happens to be the most recognised Myeloma haematologists here in Melbourne, on Sarah’s insistence we did. As a result, some of the decisions that we soon have to make relating to our path forward are a little clearer.  As you may recall, my shitty cancer has resurfaced and is growing.  At some stage soon, it is likely that I will need to commence a three month program of chemotherapy in an attempt to reduce the cancer.  Assuming this is successful, I will then reach a crossroad where I need to make a decision, a decision that is now more clear given our recent ‘second opinion’.  Our decision or choice is this…Likely longer lifespan with compromised quality of life OR Likely shorter lifespan with improved quality of life.

The associated options are;

• Option 1 – longer life span: Immediately following chemotherapy treatment, submit for another stem cell transplant where the stem cells from one of my brothers is transplanted into me.  Effectively an immune system transplant.  I understand that this option is my best chance of having a sustained longer term remission. However, it does have its risks with the most likely being reduced quality of life associated with Graft Vs Host disease, where the introduced immune system can attack my body.  This impacts everyone differently and can range from very minor side effects such as persistent nausea and diarrhoea, through to more significant side effects such as major organ damage or impairment and even death.  The upside, statistics suggest I will live longer with this option.
• Option 2 – improved quality of life: Following chemotherapy treatment, we shelve the stem cell transplant and commence a long term low dose chemotherapy program.  Whilst this has side effects, they are typically quite manageable (hence the improved quality of life).  However, stats suggest that the cancer will find a way to conquer the chemotherapy, and re-emerge more resilient to secondary chemo drugs.  With this option, whilst I can jump into the next stem cell transplant at any time, the longer I put it off and the more resilient the cancer becomes and the less effective the stem cell transplant is likely to be.
• Option 3 – Something in between.

The real kicker is that whilst I feel more comfortable that I understand my options, the actual outcome of any treatment is unknown as everyone responds differently.  Hmmmph!!  So for now we sit and wait.  I recently had another bone marrow biopsy, where they take bone and bone marrow from my pelvis and test for cancer prevalence.  I get the results back next week.  If the numbers are favourable, then I don’t need to make any decisions for a few months yet.  If they are significantly increased, then it may be decision time.  Fingers crossed hey.

In my recent updates, I have spoken about bucket lists and goal setting.  Why??  I share my thoughts on this because I hope to inspire people to live deliberately.  I want to inspire you, the people I care about, to be purposeful about what you do, what you achieve, and ultimately, the legacy that you will create and leave behind.  I know it sounds cliché, but we can all make a difference. We can make a difference in our lives and in the lives of others. We do this by setting goals to be the best we can be and by establishing a bucket list so that we can have as much fun whilst we navigate our current lives.  I have spent a lot of my life living in a place where I have been happy to accept comfortable mediocrity.  I didn’t plan to achieve, I simply walked the path as it emerged.  I was quite happy living in that manner.  However, I have found that with only minor changes / planning, I can be more deliberate about the way I live.  I can impact on more people, the people I care about. You.

Take care

Geoff.