Category: Charity Fundraising

Hello my healing team.

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

It feels that not a lot has happened over the past week. I have been living Groundhog Day, each day waking up expecting to find myself with tire marks on my chest after having been hit by ‘The Truck’.  I don’t want to celebrate too soon, but I think I may have dodged ‘The Truck’ as I am yet to have any of the nastier symptoms including nausea, diarrhoea, contracted any infections or had general body/bone pain!!  Frikkin awesome!!  I am actually feeling quite well with my only challenges being fatigue and loss of appetite.

The return of stem cells on Day 0 went off without a hitch.  Apparently they preserve my stem cells in a solution that smells like urine after eating asparagus. So for the following few days I stunk like the wee wee asparagus man. Yay. Today is Day 10. On Day 8, I was very pleased to report that I hit zero!!  That is to say that I no longer have any white blood cells (WBC) cruising their way around my body fighting infections. Whilst it may sound a little alarming, it is actually the number that I have been hoping to hit for several days now. It means that the chemo drug Melphalan successfully removed all bone marrow, and has hopefully nailed most of the cancer cells!  From here I expect to stay at zero WBC for several more days while my newly transplanted stem cells embed themselves in my bones and restore my bone marrow (bless their cotton socks).

So for me now, Groundhog Day has me waiting for my ‘numbers’ to pick up. I need my WBC count to go over 1.0 before they will allow me to go home. My biggest concern now is avoiding infections and illnesses while I have no immunity. So for all of you out there that who had cleared their calendars and were planning to visit me, please make sure you have no lurgies!

Over the past 12 days, Sarah has been working to keep the kids in their routine and happy, and she has driven to Melbourne every day to keep me occupied. She really is awesome.  A lot of people are providing much needed support to Sarah and I by visiting, calling, providing cooked meals, babysitting etc. Both Sarah and I are very thankful for all you have given. Thank you.

To update you on our fundraising for the Leukaemia Foundation, we are close to raising $25k (not all is shown on the LF website http://my.leukaemiafoundation.org.au/geoffnyssen ). Thank you so much for your generous donations and support.  We are still collecting donations, we had a raffle for diamond earrings that were donated (won by Kristy Lewis) and we are now holding a raffle for a Jimmy Choo clutch worth over $1,000 that was also generously donated. Tickets $50 – please contact me for more details.

I have attached a few photos.  I particularly like the picture drawn in my room by my daughter Georgia.  Also, there is o photo of me getting my stem cells back (red liquid in drip).

Until my next update,

Take care

Geoff

Hello to my healing team (if you are reading this and sending positive thoughts to me……..then that is you).

I hope this update finds you well.

Although i have been in touch often regarding our fundraising activities, i thought i would give you an update on how i am progressing.    Apologies for the ‘Bryce Courtney / Tolkien’ nature of this update.

On Tuesday, I was admitted with a bald head into St Vincent’s Public Hospital to commence my Stem Cell Transplant (SCT). Whilst I go into this procedure confident that it will help me achieve Complete Remission, I also have to be honest that it does concern me how all of the drugs administered will negatively effect me and my wellbeing. Being a little more honest, I often feel bloody annoyed and sad that my family and I have to go through all of this at this point in our lives. I know i am not alone in those thoughts. They are shared by those who care about me / us, and they are shared by others who have loved ones touched by serious health and life challenges.

I am, however, completely overwhelmed and thankful for the kind and generous support shown to my family and I from all of those around us. I have been amazed by the generous donations of money, donated items for raffle and for the time you have spent getting in touch with us to share your stories, sending messages of support and inspiration, popping in for a coffee, helping us with the kids or just being there to instigate a laugh.  With my SCT now underway, please keep it coming as our the next few weeks will be a challenge…… not to mention a bit boring whilst in hospital. Please also know that visitors are more than welcome unless you are unwell.

So the injection and ingestion of drugs started yesterday (Tuesday). This is considered day minus 1. It started with two litres of saline, followed by a litre of the chemo drug Melphalan, then another couple of litres of salty water. This has been complemented by another 20ish injections that are meant to assist with nausea, diarrhoea, water retention, fatigue, blood thinning, virus immunity enhancers, bacteria immunity enhancers, steroids, pain management and general antibiotics (to stop any other critters from getting me while immunosuppressed) to name a few. The plan now is to return my stem cells today (well 2.5M of them). This is day zero. In addition I will get many of the supporting drugs noted above as well as some phenergan to slow me down if needed, some additional nausea meds and more steroids to supercharge the effectiveness of all drugs administered. I do wonder what will be the cause of my death when I go (at the age of 80…….or possibly now 78 :o).

As a chemo drug, the Melphalan has a short ‘active period’ (half life of one hour).  In that time, it has targeted all fast growing cells in my body including those in the mouth and digestive tract, hair, bone marrow, stem cells and importantly the cancer.      As suggested, I get my stem cells back today – day 0.  It is expected that by day 4, my bore marrow will be gone and by day 7, my white blood cells and platelets will be depleted to nearly nil. Until day 7, I expect to be quite mobile and out, but after this time I will be restricted to the hospital…….and will begin to feel quite rubbish. This will be the rough time and will last until approx. day 14 at which time my marrow and WBCs should have re-established enough to provide minimum levels of immunity, which will have me feeling better.  It is between day 14 and day 20 that I should be well enough to return home. I understand that fatigue and nausea will continue to be my buddy from then for the next 3-6 weeks.

So I have been thinking a little about what this gig is all about.  And whilst there is no one easily articulated answer, I think that part of the answer sits in the following – We are here to create and nurture some form of positive growth, something that when we leave (or whilst we are still here) can become bigger and better than what we were or what we did. This can include many things not limited to;

• our kids and families
• other relationships we hold or people we can influence
• the homes we build
• the environment we live in
• the infrastructure we build and support and
• the systems and processes that we create and interact with to hold them all together.

All of these items are areas that I can positively influence and support their growth. I see my current health situation as another topic that I will have personal experience and knowledge on that I can impart to others to support, nurture and enable.

I have attached a couple of photos showing me on day -1 with my head (entirely bald excl eyebrows), the view from my ‘hotel’ room, my morning injection proposition and me getting the Melphalan (significant as it is my closest step to CR). I have also added some photos of my supportive bald siblings and dad.

To update you on our fundraising for the Leukaemia Foundation, we are close to raising $20k (not all is shown on the LF website http://my.leukaemiafoundation.org.au/geoffnyssen ). Thank you so much for your generous donations and support.  We are still collecting donations, we had a raffle for diamond earrings that were donated (won by Kristy Lewis) and we are now holding a raffle for a Jimmy Choo clutch worth over $1,000 that was also generously donated. Tickets $50 – please contact me for more details.

Please note that I have been a little more descriptive in this update as to how things are going. Some of the things I am going through are not nice, in turn, some of the upcoming updates may not all be entirely nice. I understand if you would prefer not to receive these updates. Please let me know if this is the case.

Big hugs to you all.

Thanks

Geoff