April 2017 – Geoff Nyssen

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

With gratitude comes happiness

Onwards and Upwards No. 42

Hello my healing team,

I hope this update finds you well.

As I write this, I sit at the Alfred Hospital doing all of the pre testing before I can undergo a Stem Cell Transplant (SCT) which is booked for mid April. Today, I have had a full skeletal survey, a chest X-ray, a cardiac test, an ECG and a detailed blood exam, all completed to ensure that my body is strong enough to tolerate the bad ass drugs that they are going to give me as part of the SCT. I need the SCT to bring my Myeloma back under control and to give me a chance at long term remission. When I ponder it, it sucks to think that these drugs are going to be that hard core and harsh that they need to comprehensively test the condition of my body to ensure I can tolerate them. Crazy!! However, I am doing all of this to live longer.

It is my perspective that my health is just one aspect of my life, and whilst it is pretty challenging, the rest of my life gives me so much to be grateful for. I feel grateful because I have;

Two happy kids;
A beautiful wife who is caring and supportive.
Had more than 1000 people attend the MY Mount Eliza Festival that was the realisation of my vision and dream.
Been supported in the delivery of the Festival by over 120 volunteers, with most of those being my amazing family and friends.
Through the Festival, raised over $25k for Myeloma Australia so that they can continue to support patients, carers and families.
Shared the event with most of you.
A couple of weeks of school holidays where I can spend fun times with my wife, kids and friends.

All of this is just frikkin awesome!! I feel so appreciative and grateful.

I was recently listening to a presentation delivered by David Steindl-Rast. He explained why happiness is born from gratitude. To quote him, “If you are grateful, you’re not fearful. If you’re not fearful, you’re not violent. If you are grateful, you act out of a sense of enough, as opposed to scarcity, and you are willing to share. If you are grateful, you enjoy the differences in people and are respectful.”

The way I see it, if you are grateful, you appreciate, and with appreciation comes happiness. When I stop and reflect on what I am grateful for, I appreciate what I do have (in the sense of enough) as opposed to what I don’t have. It is at this point that I don’t focus on my challenges, I focus on the abundance of awesomeness around me!

You are part of that awesomeness. Thank you.

Take care

Geoff