Geoff Nyssen – Page 3 – Empowerment, Wellness and Deliberate Living

There is something about Death

Onwards and Upwards No. 43

Hello my healing team,

I hope this update finds you well.

Health-wise, I feel good. My white blood cells are at their low point, so I have low immunity, but have managed to dodge all infections thus far!! I have even managed to get outside for the occasional walk in the winter sun. Winning!!

In the lead up to this SCT, I was made abundantly aware that statistics suggest 1 in 7 people will die from this procedure. When first told, of course my bravado and positivity came out, pushing aside any suggestion that I could die!! I have always believed, or knew, that I would be on the good side of those statistics!! I have to so I can make 80!! My challenge is that I have had a lot of time and space to contemplate. I found that the stat of 1 in 7 was keeping me awake. I also found that I often felt emotional. My feelings were unresolved and were playing on my mind big time. Why ……. I hear you ask?? Well if you were going skydiving (or any activity) with seven other people and you knew that one of you would die, you just wouldn’t do it!! But here I am in the position where I have to go through this SCT. I have no obvious alternative offering long term reprieve from this disease. The challenge is further compounded by the statistic that the average life expectancy after diagnosis is four years, a stat that becomes sadly real when you see good friends with Myeloma pass away. Sometimes it can all become too much to manage. It’s a tough gig!!

I knew I had to find a way to come to terms with those statistics. I mean …… really come to terms as opposed to brushing the thoughts off with a ‘she’ll be right mate’. In the past I have brushed it off because I am not scared of death for myself. When I die, I won’t care. I’ll be dead!! What scares me, and makes me sad, is how my dying would effect those close to me, my beautiful Georgia (8), Riley (11) and Sarah. How would they cope should I die soon. It shatters me to think……

Being honest, I really didn’t know how to start the conversation with myself, or others, on how to deal with the prospect of death. To get my head around it, I needed help…. enter my fab kinesiologist Nanette Abbott!! After much discussion and a balance, we achieved some clarity. When I used to imagine life post Geoff, I pictured dark clouds rolling in for all of those around me, I see crying, I see sorrow. Not trying to talk myself up :), it’s just how I saw it. I also saw me no longer being present. Not being there for them when they needed me. After some time spent with Nan, I have resolved that I can influence this outcome. Death doesn’t have to be all doom and gloom. Sure it will be a sad time, but I think that if I was to pass, I will still be there for the ones I love ❤. Spiritually, I am not religious, so don’t believe the traditional ‘heaven after death’. But I do believe in the soul and energy transfer. A scenario where the soul, the source of living energy, moves out of our body, but is still present. It is in this instance that I can and will be present in the days, months and years post Geoff. A butterfly will land on Georgia’s face and it will be me tickling her cheek. The wind will blow and it will be me affectionately roughing Riley’s hair. The sun will shine and it will be me placing kisses on Sarah’s forehead. You will be able to see my smile on the horizon with every sunrise and sunset.

Let’s face it, it would be a bed of thorns as opposed to one of roses should the worst case come to fruition, especially for those close to me. The reality is that I won’t be here in person, however it does provide a little comfort to think that I will still be there for them in some capacity.

Hug your loved ones tight.

Take care

Geoff

In memory of our good friend Simone who, at 38 years young, passed last week from Myeloma. Our thoughts are with Brent, and little ones Harry and Finn.

An ode to the Allo

Stem Cell Transplant No. 3 – Update 1

Hello my healing team,

I hope this update finds you well.

I received some promising results last week with my recent bone marrow biopsy showing that after chemo and one Stem Cell Transplant (SCT) my cancer has gone from 30% down to 0.2%. This is really positive as it shows that the cancer is readily treatable and behaving as it should!! Yee har!! The challenge is that there is still cancer present which confirms the need for additional forms of treatment.

To really nail the cancer, last Thursday, I received an Allogeneic SCT. This is where I receive cells from my brother Dan. His cells will effectively take over the immune function in my body. It does this by replacing my bone marrow with his in the hope that Dan’s bone marrow (and immunity) fight my cancer where my body cannot. Riley suggests I will be a mutant Uncle Dan!! Although Dan’s cells have only been in for a week I am a little worried. I can already feel the mutation occurring with my hair going curly and my brain function slowing 😎. I would love to think that I was morphing into an elite version of Dan, but I don’t think I could ever be as funny as he is!! Actually, Dan giving me his cells is a selfless act that I am truly thankful for!! He may not be the messiah, but he is a very good boy (did you see what I did there?? His funny is coming through already!!).

The exciting aspect of this SCT is that, based on current technologies, this is my closest chance at achieving long term remission. It buys me time, and let’s face it, the thing that we yearn for most is time. With a massive possible upside comes massive potential down sides. As this is similar to an organ transplant, there can be rejection issues. These chronic side effects, which don’t normally materialise for several months into the procedure range from rashes and discomfort, through to major organ complications and possible death 💀. Given I am already committed to living into my 80s, I’ve decided that the latter is not an option. Wish me luck with that one hey!!

It feels like it has been a huge process getting to where I am now, having just had the SCT. It started way back when I was first diagnosed in March 2014, when I was told that the Allo SCT was likely the best option for me. To prepare mentally there have been many hoops that I have had to navigate, and physically the SCT has given me a kick up the arse for the second time in as many months.

The transplant process has been ongoing for the last few weeks and for once, I have not been the only one self injecting drugs. Dan had to do some injections too!! Payback for him being a cheeky snot when we were kids!! I had a week of chemotherapy, topped off with Total Body Irradiation. The irradiation is like something out of the dark ages where they put you in a room resembling a concrete bomb shelter, place you on a bed against a wall, then blast you for 30 minutes with a machine that looks like one of the death ray creatures from War of the Worlds!! As I lay there, I felt fully reassured as they put a big block of lead next to my head so that the treatment wouldn’t ‘fully’ screw me up. Lucky me!! Next was receiving Dan’s cells. Dan did a marvelous job with his collection giving up 5.7M cells for me. I only needed 2M!! He always was a high achiever. Apparently, Dan’s cells ‘looked’ perfect, resembling guava juice, so in they went.

Over the past week, I have felt pretty crappy with nausea and severe fatigue returning with vigor. Thankfully I am starting to feel better now, but admit that cautiously as my white blood cells are now dropping me into a neutropenic state (as expected). This means that I will rug up for another week at home as my immune system will be dangerously low. I just can’t risk getting another infection. My infection last month hurt too much!!

With everything that has occurred over the past few months, I feel cautiously optimistic!! Whilst I am in the thick of this very dense cancer forest, I feel that I can see the light on the other side of the darkness, and the light is in the form of a beach somewhere; a beach that has warm golden sands and silvery water, and is drenched in warm sunlight that will sustain me for the next 30-40 years!! See the photo attached :). Come visit!!

Take care

Geoff

Post Transplant Joy

Stem Cell Transplant No 2

Hello my healing team,

I hope this update finds you well.

The last week has been quite eventful. As you know, I have been feeling crapola and have lost my appreciation for zopper doopers. Regardless, with the support of my beautiful wife, I have been existing well enough out of hospital. On Saturday morning I even plucked up the energy to go for a walk in Fawlkner Park to watch younger people playing footy. It was nice.

I checked into hospital on Saturday for some blood tests. At that stage, the chemo had done its job as my blood counts had all hit zero meaning that I effectively had no immune system. So after being in hospital for half an hour, I started shaking uncontrollably,I found myself in growing amounts of pain and deteriorating quickly. I was put in a bed and soon become delirious. Every time I opened my eyes, there were more people over me, pumping in all sorts of drugs and connecting me up to different machines. I woke up three hours later to learn I had scored an infection, which had started doing nasty things to me. Effectively, it properly nailed me and it has taken until today to get back on my feet.

I woke up yesterday to a bit of a surprise. After pulling my covers back, it looked like a tabby cat had lost all of its hair in my bed (not that I have ever seen that happen)!! At the same time, my body was looking a lot more ‘boyish’ . So I took the big step and shaved my head as I got sick of it all falling out everywhere. So now I need a beanie to cover my big cold ears.

Today I checked out of hospital. Unfortunately, all in my family have been unwell, and wanting to avoid another infection, I am staying with friends. Being amazingly accommodating my buddy Kristy has given me a well appointed room, and was even thoughtful enough to provide a ‘guest’ bottle of shampoo, which I thought was a bit of a low blow given my new circumstance 😂. So it is time to keep my head down and focus on getting better. Onwards and Upwards!!

A few nights ago, I walked in the shoes of that person who I have never been before. I was suffering massively from whole body pain. I felt nauseated and ready to release from either end. I was experiencing hot and cold fevers and the shakes. I struggled to lift my head up off the pillow to take a drink of water to soothe my dry mouth and cracked lips. I felt tired, vulnerable and sad. As I endured this, my saving grace was in the knowledge that I knew this stage will pass. I can be strong and show positivity because there is light at the end of the tunnel and I will get better. However, I let my mind wonder a little and sit in the emotion where this stage wasn’t going to pass, a reality for many cancer patients, and a possible future eventuality for me. I wanted to experience that feeling of helplessness so I could understand that scenario. I admit to being a little scared and very confronted. I may even have let a little tear go. It’s not a place I want to be again any time soon and luckily for me, I know I won’t be. They say it is a good practice to occasionally walk in the shoes of others. They were very uncomfortable shoes!!

For many people living with F@$ken cancer, much of the pain and discomfort is not directly caused by the cancer, but is a result of the chemotherapy drugs administered. I now realize why people often forgo chemotherapy, and roll the dice of life.

Take care

Geoff

Transplant Time

Stem Cell Transplant No 2.

Hello my healing team,

I hope this update finds you well.

Last week I got four bags of Stem Cells put back into me. I would love to say I am flying along, but I will stay honest. I have not been well. I am feeling pretty shitty actually. There are a lot of symptoms that could have materialised, and most of them have. Nausea, diarrhea and severe fatigue are the ones that have me at my worst. The fatigue has me sleeping the whole day and too spent to move, and the other two have me breaking the land speed record and yelling “for god sake…. get out of my way”!! I wish I could paint a prettier picture of it, but I cannot. A kind friend recently asked whether there is anything that they could do for me. My response is that nothing can be done. I just have to suck it up and work through it. Wish me luck.

The last week has been interesting in that the kids are absolutely aware of my predicament, or rather ‘our’ predicament. Things just aren’t the same at home. For starters, I am resting all day which never happens, we have had lots of people over to help, and we have our fab friends dropping off food. Whilst this is humbly appreciated, they are red flags to the kids that something at home is wrong. The kids coping strategies have been on show with Georgia being quiet, more reserved and teary. Riley has been more considered, short and grumpy at times. All pretty much expected, but sad to see our kids having to experience these things. We realize that when times are challenged, the best way to cheer up the kids is with nice food. We gave them Zooper Doopers.

Take care

Geoff

Stem Cell Transplant No. 2 – Transplant Preparation

Hello my healing team,

I hope this update finds you well!!

Firstly, thanks for all of the wonderful support that you have shown to Sarah and I over the past few days! All of your messages have put a smile on my (somewhat bald) dial!!

All kicked off yesterday with the insertion of a Hickman line. This is a couple of tubes that get installed into my chest and connect to my jugular vein for quick blood access. The installation is a surgical procedure that is meant to take an hour. However, I got Dr Quick Fingers who was super fast and knocked it over in 15 minutes. I think he had another nine holes of golf that he had to get to. It is normal for the patient to be comfortably sedated during the procedure, but Dr Quick Fingers forgot to administer until half way through so it didn’t really kick in until I got back to the recovery ward. It did make recovery more interesting, especially the process of going to the toilet!! I’ve never had to concentrate so hard 🙄.

For me, the Hickman line has its pro’s and con’s. Up side is that there will be no more needle jabs for the next 3-4 months. Down side is that I have these horrible tubes hanging out of my chest. I have to be careful not to get them too wet so no swimming. I must not damage them or pull on them so no wrestling with the kids (or Sarah 😻) and it is infuriatingly itchy as the holes in my chest heal. On top of that, I need to go into the hospital weekly to get the dressing changed so I am tied to this crappy place. Bloody annoying. I have watched a few episodes of ER in my time so I felt quite comfortable to redo the dressings weekly myself but ‘apparently’ given the device goes straight to my heart, they don’t want to risk infection!! Blah.

High dose chemo today (Wednesday).

So they start by sticking in anti nausea, anti bacteria, anti viral, anti fun, a dose of pain management and loads of saline. Then they give me some steroids to pep me up and keep me awake. I was also given a diuretic so that I can quickly pass the toxic drugs out of my system, then drugs to stablise my kidneys to protect them from the harsh effects of the chemo and the dying cells in my body. That’s the first 10 minutes done.

Next they introduce the Melphelan which is high dose chemo. Melphelan was developed in 1980. They first designed it to sterilize dogs and cats. It also got picked up by PinoClean as a hospital grade toilet cleaner. Winning!! (Please know that I rarely let truth get in the way of an entertaining story). So they run the Melphelan through me for roughly one hour, and as it passes through me, it indiscriminately kills all the fast replicating cells in my body including hair follicles, cells in my gastrointestinal tract, my mouth lining, my bone marrow and hopefully the cancer. Some of the side effects include ulcer damaged mouth and “back passage”. Recent medical advances has found that if the patient sucks ice, it helps with the mouth ulcers as the cold stops blood (and Melphelan) flow to the mouth lining. I asked the nurses what I could do to protect my back passage and they gave me a Zooper Dooper 😳.

So I have been asked many times over the past week how I feel. When I pull away the facade, I just feel pissed off!! I won’t explain why. It’s pretty self explanatory. Sarah says she is pissed off too 😡!!

As you reflect on this update, know that I am sitting in the day oncology ward at Alfred hospital (one of 20-ish hospitals) that treats up to 20 patients at any one time. The seats are full from 9am to 5pm with patients typically staying for an hour…… that’s a lot of Zooper Doopers!!

Have a great day.

Take care.

Geoff