Geoff Nyssen

Onwards and Upwards No. 21

Hello my healing team,

I hope this update finds you well.

I often write about my experiences of coping during times of adversity.  In my experience, the adversity that I have been exposed to in my life has all had some level of associated stress. Adversity creates stress.  I think that stress can also lead to adversity.  Sadly, some events bring with them unprecedented levels of stress and it is during these events that we need either an inbuilt ability for tolerance, or some method to help us navigate and process the stress we face. It is our ability to cope with and to process stress that often governs how damaged we will be on the other side of the adverse experience.

I think of all of those times when I was highly stressed. More recently it has been related to my being unwell. But before becoming unwell, I had quite a bit of experience dealing with stress whether it was work related or was due to Richmond Tiger’s inability to string together a decent season of football.   Over the years, the stress that I have been exposed to has increased gradually so I have been able to acclimatise. I could function quite well in high stress situations. This ‘training’ certainly helped me deal with the adversity that I have recently endured. I could be thankful that I have endured high stress in the past as it has helped me deal with my current adversity.  Alternatively, I might also question whether that same stress made me more susceptible to becoming unwell in the first place?

With that thought, do you operate in a high stress environment?  Do you cope well or are you ignoring signs that could lead to you becoming unwell.  Could your stress be leading you to adversity?

Take care

Geoff

P.S – By the way, a recent PET scan has identified that I have a Hurthle Cell Tumour on the left side of my thyroid. This is an unrelated condition to the Myeloma.  It has a 70% chance of being benign and a 30% chance of being malignant.  Either way, I will have the left half of my thyroid removed in the coming months and have my fingers, legs and toes crossed that it is not cancerous.  Just a little more adversity to deal with……… and deal with it I shall.

Onwards and Upwards No 20

Hello my healing team,

I hope this update finds you well.

It has been a little while since I wrote my last update.  Whilst writing my updates is usually a sanctuary for me, I just haven’t felt like doing it.  I just haven’t had anything that I felt like sharing in this format.  I have been reflecting on my updates, and I want to use them as a tool to motivate people.  To show strength and lead by example. With that, sometimes I don’t always give a totally accurate account of the challenges and the adversity that my family and I face.  I have spoken with a few of you about my circumstance, but many I have not. This update is not intended as a ‘pity party’, it’s just me sharing with honesty.

I have a disease where statistics say that in eight years from now I won’t be here with you to share the good times or the bad, laugh with you or cry, to walk or talk.  I do everything I can to remain positive and I constantly tell myself (and others) that I will live until I am 80. But with this stat hanging over my head, my positivity is silently tested. It is further tested every time I read that another Myeloma patient has died.  I read that on a weekly basis and I can’t avoid that reality.

When I am struggling with my circumstance, I often brush the emotion away and tell myself that I must be strong!  I tell myself that I have to believe that I will live until I am 80.  Geeze, if I don’t fully believe it, how will the cancer get that message and know it needs to piss off? I try to use a voice or vibration strong enough so that it knows I am serious.  But when I see the stress and sadness in Sarah’s eyes as she struggles with the thought of losing her life partner, it breaks my resolve. I don’t give in, but it does become particularly real.  It also becomes real when I have that discussion with Sarah about me dying.  We never broached the subject before, but we did recently.  I spoke with confidence as I don’t think this will happen any time soon, but it sucks having to talk about how Sarah will manage after I am gone. How does Sarah manage when the kids are having a tough day, how does she manage when she is having a tough day, how do the kids manage without a dad, will Sarah have enough money to maintain the family, will the kids be able to do their activities, can she stay living where we do?  I am only 41.  Sarah is not yet 40. Why should we have to talk about this now?  It’s just crap.

Death is one aspect of cancer we have to face.  Dealing with cancer whilst alive is another aspect. Nearly 12 months ago, we all celebrated and danced a little jig when I found out that I had managed to achieve complete remission.  The great thing about being in remission was that whilst there, there was no disease progression. There were only (relatively) minor physical effects, and I could live pretending that I didn’t have cancer.  That paradise was shattered when I was told I had early disease progression.  Despite doing lots of positive things to maintain wellness and despite me ‘willing’ myself to maintain complete remission, cancer just laughed at me and quickly re-emerged.  F&@k you cancer!

The challenge of not being in remission is that I am now exposed again to its life changing effects.  At some stage soon I will recommence chemo.  Drugs that make you want to vomit, you feel pain and you feel tired.  I have to plan my weeks with doctors appointments, and I have to plan my months knowing that I may be recalled into hospital for a stem cell transplant.  The ‘allo’ stem cell transplant is my best chance at long term remission, but it also comes with it own stats.  Stats that say that 10-30% of people die from this procedure.  I quote that with hope because that means that roughly 80% of people survive, but it still sucks to have it on my horizon.

Regardless of what you have just read, when I see you next, I will smile, I will show positivity, I will be strong. I will interact with you in a very normal fashion and I hope you interact with me in the same way. After all………….I am going to be here into my 80s.

Onwards and Upwards.

Take care

Geoff

 

Onwards and Upwards No. 19

Hello my healing team,

I hope this update finds you well.

As you can imagine, the words “Early Disease Progression” are not the words I wanted to hear today. Disease progression bloody sucks, but for it to be “early”……geeze.  What a blow.  To keep it context, in October, I had 0.1% cancer cells in my bone marrow, February it was 0.8% and now it is 1.5%. That my friends is disease progression. It doesn’t sound a like a high number and the Nutty Professor says it is following the trend that stats says it will, but as I have iterated in the past, I really don’t like the prognosis associated with those stats.  If this trend continues, I will be back in hospital for another stem cell transplant quicker than you can say “rumplestiltskin” ten times.  The most distressing aspect of this all is that now I am heading into a space of uncertainty.  Control is being taken away again.

So what do I do now???

First, I need to stop and take a deep breath. Then;

1. I need to cut out the white noise that invades my thoughts, the same white noise that brings with it anxiety and doubt.
2. I need to focus and prioritise what is important.  Of course family and wellness comes first. I know what is important as they are imbedded in my goals.
3. I need to strive to improve. By following my gut instincts and researching, I can learn and modify what I do with improved learning.
4. I need to keep the door open for new people to enter, and with that, I need to be ready to change.  Change may bring the cure.

Overall, I just need to continue to be a good person.

Happy Friday.

Take care

Geoff

Onwards and Upwards No. 18

Hello my healing team,

I hope this update finds you well.

When I was first diagnosed with cancer, my world became a blur.  Many things that I was comfortable with, that I regarded as normal, changed.  They changed and I had absolutely no control over them.  Some changes that I had no control over included:

• With a broken shoulder, I found myself very limited in what I could do physically.
• I had to stop working, which at the time was the one thing that I spent most time doing.
• I was unwell which was foreign to me. I had always considered myself bulletproof.
• Living to 80 and beyond became a pipe dream as opposed to a birth right.

Effectively, I had lost control of my life.  I was absolutely disempowered. Move forward 15 months and I can now see positives associated with it.  Being in this position enabled me to strip back all elements of my life.  I was forced to stop doing everything that I was previously doing and returned to the base elements that I needed to exist.  By stripping my activities back to bare bones, I have been able to critically analyse the different activities that I fill my days with, then prioritise and enhance those that are most important to me. Fundamentally, I am using this insight to rebuild my life, focussing on what is important.  From a position of complete disempowerment, with support from family, friends and colleagues, I am now beginning to move forward with more clarity. I feel empowered.  Watch this space.

Take care

Geoff

Onwards and Upwards No. 17

Hello my healing team,

I hope this update finds you well!!

Today, 20 May 2015 is National Myeloma Day.  🎉 Yay happy Myeloma Day friends!!  The first text message I got this morning wishing me happy Myeloma Day put a smile on my face.  The latter part of text even made me laugh………but I cannot share that due to the explicit language used which was understandably derogatory towards cancer. As I sit here, I am a little confused. Am I meant to mourn or celebrate Myeloma Day??

I guess I have good reason to do both.  I can mourn as I think back of the challenges that my family and I have had to overcome, the pain and the anxiety we have endured, the uncertainty that comes with a cancer diagnosis.  But whilst I can mourn and dwell, I don’t.

Lets be clear. I don’t think that I will throw a party to celebrate today.  There will be no cake or candles. However, I will reflect on the positive aspects of my diagnosis, in particular the positive changes that I have made which include;

• I am now a lot kinder to my mind and my body.
• I work harder to live deliberately.  I focus on what I want more of in my life, and strive to obtain or achieve it.  No more plodding along.
• I appreciate my family more.  Being with them is so important. I have made a conscience decision to be more present.
• I find that I can encourage and influence people. So I now direct this skill to helping others whether it be through raising money for charity, encouraging people to register for donating stem cells, or for encouraging others to inject more ‘wellness’ into their own lives.

So as you can see, there are positives that can come from being diagnosed with Multiple Myeloma.  So can I ask that you embrace these positives with me by making an appointment to donate blood and (at the same time) registering to be a stem cell donor.  http://www.donateblood.com.au

Happy National Myeloma Day!!

Take care.

Geoff