Geoff Nyssen

Hello my healing team,

As always, I hope this update finds you well!!

The great feeling of being in remission has now settled in and I am now starting to look towards future management of my cancer and wider wellbeing. Since my last update, I have met with Nan (my Kinesiologist), Prof. Choong (orthopaedic surgeon and shoulder specialist) and Prof. Andrew Spencer (Myeloma guru).  At this stage, my recovery is progressing well, and very much as expected.  Physically, I am feeling good and have started going to the gym to re engage my deteriorated muscles, and have started walking so that I can reestablish some cardio form. Last week I thought I was feeling good and so I went for a run. I set off feeling like Rocky Balboa with grey track suit and red headband (only I wasn’t running up steps in Philadelphia) and I very soon realised how far my fitness had been set back. I was soon waking home feeling like Patty or Selma from the Simpsons (even looking the same shade of yellow).

Yesterday I met with Prof. Choong to assess my shoulder.  It was Prof. Choong that first diagnosed my Myeloma, so it was really nice to go back and show him how well I’ve progressed.  I was pleased that he shares my optimism and agrees that I can be here in 30 years time.  He is please with my shoulder recovery and is suggesting that I may not need any surgery. As a precaution I will be having an MRI scan in the next few weeks to assess the current structure of the bone. It is likely that physio / rehab should have me playing bball in no time, although I think my game will be a little like Elmer Fudd’s from Space Jam.

It was really interesting to meet with Prof. Andrew Spencer to discuss my future myeloma treatment. Prof Andrew Spencer is on the scientific advisory board for the International Myeloma Working group. Effectively he is Australia’s Myeloma guru. He also oversees the Allogenic (Brother) stem cell transplant program at the Alfred Hospital.  He has suggested that if I relapse, we will do an Auto SCT (to reduce the increasing cancer levels) followed by the Allo SCT (to introduce a new immune system into my body). What I find amazing is that I will inherit the strength of my brothers immune system, but I will also get his weaknesses.  I already have verbal diarrhoea with a health splash of arrogance so……can’t catch what you already got!!  It has also evolved that Prof. Spencer will be my treating doctor from now on as he will need to manage me through my Allo.  Dr Ali doesn’t have the facilities to do the Allo.  Although Dr Ali won’t get to read this, I would like to take the opportunity to thank him for his assistance!  He has been awesome in supporting Sarah and I through the tough times and he answered all of my brothers difficult technical questions when they met him. He even had those nice Kleenex tissues with the infused Aloe Vero.  It feels strange to be parting ways really.  But we must progress.

My recent discussions and treatment with Nan have been really helpful and insightful.  As I mentioned in my previous update, I now need to focus on implementing what is necessary to keep me in remission for a long time. The challenge has been me not quite knowing exactly what is required to stay in remission.  There is so much uncertainty with it all and there is no single proven approach. What is clear is that I must take a look at all aspects of my life and continue to improve myself in all areas. For me, I think positivity and mental well being are key. These will be enhanced by living ‘deliberately’. By that I mean I need to seek out the things I want to do, the things that inspire me, and be active in pursuing them.  The challenge is…….what do I really want to do??

I spent a lot of time pondering the question “what do I want to do”. I think the answer to this question lies in the simple fact that I need to ‘trust my instincts’!  For all of us, opportunities continually present themselves, however, in the past, I had my head down and failed to recognise or act on them.  I effectively had my blinkers on.  THIS HAS TO CHANGE!

An example of me trusting my instincts, since being diagnosed, I have had to make a lot of decisions about my treatment, maintaining my wellbeing, and how I interact and communicate with everyone around me.  When I was first diagnosed, an opportunity came to see my Kinesiologist Nan.  At first I was apprehensive as I had no idea what Kinesiology was. But I went along anyway.  It felt like the right thing to do.  As it has evolved, Nan has been a huge help to me. She helps me address and respond to the issues that are challenging me the most. She has also helped me open my mind to the opportunities that are out there for me.  From the first day I met her, she strongly encouraged me to write and to communicate my story. This has materialised through my updates, a tool which has been very rewarding for me.  Tomorrow, communicating my story will go to the next level, as I will be on the radio with Nan talking about my journey. Between 3 and 4pm tomorrow (Wednesday 22 October) I will be on 88.3 Southern FM, Mentone to talk about the path I have walked.  Please tune in.

With all that I have been through in the past 6-8 months, I know that I don’t want my family or I to have to go through that again anytime soon. So my focus has to be on what I need to do to stay in remission and I think my primary need is to live more deliberately. I feel that I cannot afford to go back to the old normal.  I now need to create a new normal. When I look back to 2013 (and prior) I think that my life was quite uni dimensional. I was happy with the predictability of my life then.  I roughly knew what was going to happen each day, each week. Now I look forward to not knowing what I am going to be doing, rather knowing that what I need to do will present itself as an opportunity, an opportunity that I will be waiting and looking for.

Love and hugs to you all.

Take care,

Geoff

In early March this year I was diagnosed with multiple myeloma, a blood borne cancer. Since that time, my goal has been to achieve Complete Remission (given there is currently no known cure).  I have achieved Complete Remission. My bone marrow biopsy and Mibi scan, completed Monday, found no detectable trace of cancer.  Goal achieved.

I cannot easily explain how I feel about this amazing result.  I feel like jumping up and down, hugging strangers, doing strange little dances on the spot without music, laughing and crying.  Being honest……..I have done them all.  Most of all, I want to share this moment and these emotions with family and friends who have been there with me.  I have truly needed you there as the past six months have been very difficult. I am thankful.

Although I am now in remission, I do have to be realistic and at least acknowledge that remission is different for everyone, and can last for only 12 months or for 20 years. But for now, let’s go with the latter. I also have to keep in mind that I am still recovering from my Stem Cell Transplant. My doctor suggests it will take at least 3 months for me to get back on my feet, and return to feeling normal.

My next goal is to continue to adopt and implement a plan that suitably incorporates family, wellness, friends and work in a manner that sees me doing the funky chicken dance at my 60, 70 and 80th birthdays! I need to continue to do the good things I have recently implemented, and continue to evolve so that I can be as well as I can be.  As I am sure you are aware, I have already started on this goal! I hope you will all stay on this ride with me as I think I am going to need a lot of help along the way!

So the plan from here:

1. Today I look forward to meeting one of Australia’s gurus on Multiple Myeloma.  We will discuss the benefits of an Allo Transplant (brothers as SC donor). This discussion is to explore how to get me as close to cured as possible.
2. rest and recover.
3. In a few weeks time I will revisit the surgeon to assess my shoulder. You may remember that I found the Myeloma by shattering my shoulder.  I can finally investigate what condition the bone is in and what I can do to ensure I can play basketball/walk Kokoda trail/walk the Oxfam 100km walk/swim. That’s enough for now.

Thank you for all of your love and support.  As my healing team, please take credit where credit is due and know that you contributed to me achieving my goal.

Take care and hope to speak soon.

Geoff

PS……I only ate the fish 🙂

Hello healing team,

As always, I hope this update finds you well.

It has been a while since I have been in touch.  I feel that I must apologise to those who have messaged me recently and I have not responded.  I have just kept my head down to focus on my recovery. I will be better placed to respond in future so please keep the messages coming.

The last month has been rather uneventful, but a fair bit has happened. Today is Day 42 post Stem Cell Transplant (SCT).  You may recall that I was discharged from hospital on Day 13 having got through the SCT relatively unscathed. Well just to prove that I am fallible, I returned to hospital the following week with the symptoms of high temperatures, excessive pain, extreme fatigue, restricted breathing and groaning belly.  As it worked out, scans and test showed that my White Blood Cells had plunged back to zero but I was reassured by my doctor that this was quite normal.  As it worked out, the symptoms I was experiencing were due to one of the following;

1. expansion of the bones and reestablishment of my bone marrow
2. the home cooked spicy vegetarian vindaloo that I had consumed. Gotta be careful what one eats!!

I have really enjoyed the last few weeks at home.  Whilst I was in hospital, I missed being at home with Sarah and the kids. The time really helped me to refocus on what really matters. Since getting home, both Riley and Georgia had birthdays (and parties) and I was present to participate in all of the activities, I have found walking the kids to school has never been more enjoyable, it has been great being around at dinner time every night to listen to the days stories, we have spent much time kicking the footy, we have been going on walks down to the beach and we have even had the time to take our neighbours dog on a few walks.  I really didn’t give enough time or priority to these activities previously!!  They are precious.

The last few weeks has also been a time to re-establish my wellness routine.  This has included focussing on diet, meditation and the beginning of some exercise. My recent visit to the guru Prof. Avni Sali has helped to reinforce how important these are to my recovery. To revisit some of the important points from one of my previous updates;

• undertake daily meditation and some exercise.
• all meals to have at least 80% veg/greens. The chlorophyll in greens helps to maintain your body with an alkaline pH
• avoid sugars and processed foods
• regular consumption of; turmeric/ginger (curcumin); red grapes and berries (resveritrol) , cold pressed olive oil (unheated), coconut oil for cooking, cinnamon for insulin and blood sugar management.
• oily fish and cacao (70%+ dark choc) as our priority foods

A recent visit to see Nan, my fab Kinesiologist, had us discussing things to consider once I achieve remission.  Given I have found myself with cancer, I need to make sure that the environments and situations I put myself into going forward don’t contribute to deteriorated mindset and wellbeing.  Whilst all of the answers to this quandary are not immediately apparent, it is something that I need to further consider and resolve. It is clear that the process of writing about my experiences and sharing my updates has been helpful and healing for me. So I wonder where that could lead?

Something that I knew would happen through this whole process is hair loss.  I really had no idea how this would occur (or where).  Well I am happy to advise that you loose all hair from your head, and hair from other areas only ‘thins out’ or becomes patchy. I must admit that it is a little bit freaky to grab your hair and have it fall out in your hand, or to wake up in the morning and have your pillow covered in hair and find that your head has patches of hair missing. It is much harder to explain than dandruff to those who are unaware! Actually, the real fun starts when it begins to grow back as it can come back as a different colour or curlier/straighter.  I have kept my head shaved as I am not yet ready to see what that will look like. My beard has come back all patchy.  I looked like I have been attacked by a blind dude sponsored by Gillette.

So as I sit here writing today, I feel quite well.  The pain has settled down a fair bit.  It is now manageable without medication. Fatigue comes knocking regularly which slows me down a lot.  I find this quite frustrating at times, but I am heartened knowing it will go with time. On Monday I had a Bone Marrow Biopsy to assess cancer levels.  I get my results of this later today.  I feel quite anxious about the results.  Effectively this result will tell me how effective the last six months has been having undertaken three months of chemotherapy, ten sessions of radiotherapy,  a stem cell transplant, countless doctors appointments, blood tests, scans including MRI/CT/ultra scans. It will also assess my attempts at wellness and everything that has incorporated. So I sit here with fingers, arms, legs and toes crossed.  I feel that the result will prompt me to either have a glass of wine…..or a bottle of wine.  However, I do need to ‘keep the faith’ regardless of the result.  As my brother Jerome reminded me this morning, “remember that all of your uni results sucked and look at how good you turned out.”

So…………I will be in touch again soon!!

Take care

Geoff