Geoff Nyssen

Hello My Healing Team,

I hope this update finds you well.

I guess it has been a little while since I last updated you on how I am travelling. I am ok 👌. There are good weeks and some that are not so good. Regardless, I get up each morning feeling thankful. I make plans for the day, for weeks, months and years all in the ultimate pursuit of putting a bigger smile on my dial and on the dial of those precious people around me.

As I write, I am sitting in the day oncology ward of the Epworth Freemasons Hospital. There is a few litres of junk draining into me that we hope will keep those nasty cells in check all in the pursuit of a happy long life. I come in here on a fortnightly basis and look forward to this going monthly in late July. Less time spent here the better. I look around me, and all of the 30 odd ‘big chairs’ are occupied by people receiving their own cocktail of junk. They too are doing what’s necessary to keep smiles on their own dials. I do get annoyed because I know what these 30 people are going through. However, I am a little satisfied by the fact that I am likely to be the youngest here, probably by at least ten years. I wonder to myself, given I am much younger than them…… should I invite them to my 80th birthday party?? It would certainly give them something else to live for because it’s going to be huge!!!!

The last 4-5 months have come and gone without too many hiccups. On a good week I toil with golf, on a bad week I engage with Netflix. Recently, there have been more good weeks than bad. Winning. Regardless of the week, I am lifted each day when Riley and Georgia bounce through the door having spent the day at school, and unload their views on the trials and tribulations that they have experienced. It is such a privilege to be able to be home to immerse in their life.

My last last bone marrow biopsy, where we test cancer prevalence, was done in January, and the next will be done in August. I have no knowledge on how my cancer is responding to this treatment other than knowing how I feel at any given moment. I was tempted to get frustrated by this lack of detail, but soon got over it as I figure that my day to day first hand measure of ‘how I feel’ was enough.

I think about why I haven’t written much, and maybe it is because I don’t want to be known as ‘the cancer guy’. I guess I want to be known for the good things that I do or have done, the laughter and the light that I bring. Everyone is befallen by bad things or challenges from time to time. It is important to me that I do not become the bad, but rather fly free and be represented by my strengths, or best traits. I want to be Superman, not Kaptain Kryptonite!! I recognise that I have a big role to play in managing how people perceive me and what lasting impression I leave. It starts with me. Time to be superman!! As a wise man once said “No one saves us but ourselves. No one can and no one may. We ourselves must walk the path.” – Buddha

If you want ‘the feels’ this 11 year old kid has nailed exactly what I am talking about!! Watch … https://m.youtube.com/watch?feature=youtu.be&v=BmFukQHrmmk

Take care

Geoff

Hello my healing team,

I hope this update finds you well!!

I asked you for crossed fingers and I got that and more. Thank you!!

I find that I feel most conflicted about my predicament when I am uncertain about the path forward. I don’t need the path wholly mapped out. However I do need to feel confident that I am walking in the right direction. I have met with my two doctors a few times over the past week or so and we now have a way forward. I always felt that I would find a way to navigate the dilemma of hideously expensive drugs, and navigate we have. There are two drugs I need, with one estimated at $30k per month, and the second at $10k per month. My new Dr, who I aptly nickname ‘the Fresh Prince’, has drawn on all of his experience and contacts to secure the more expensive drug for free!! Yup!! Nudda! No need to sell the house and the kids no longer have to work at Safeway as night fillers!! Furthermore, for the second drug, we have found an alternative drug that I can use that is government funded i.e – free baby……yeah!!! Winning all round!!

So the replacement drug that my Dr has come up with is Thalidomide. So some background on this drug………..Thalidomide was first used decades ago as a sedative and as a treatment for morning sickness in pregnant women. When it was found to cause birth defects, it was taken off the market. Later, it became available again as a treatment for multiple myeloma. Side effects of thalidomide can include drowsiness, fatigue, severe constipation, and painful nerve damage (neuropathy). These side effects have been found to occur in 50% of patients. So…….it’s not all a bed of roses, but I am hoping I am on the good side of that 50%. If not, I may have to revert back to the drug Revlimid which I will have to pay for.

From where I sit right now, I am thankful. I am really pleased that there is more clarity on the way forward. The unknown was messing with my head. I am thankful that I don’t currently face the prospect of huge expenses. I didn’t really fancy living in a caravan. I am thankful for all of you guys, for all of the kind messages and offers to assist that we have recently received. Luv ya’s!!

Take care

Geoff

 Hello my healing team,

Merry Christmas and Happy New Year!! I hope this update finds you well!!

 I hope this update finds you well!! Since my last update, I feel that we have lived well. We were fortunate enough to travel over to Europe on holiday where we saw many amazing things and spent time with fab friends. At home we have been busy with the kids finishing school for the year, we survived a crazy Christmas with lots of connection and socialising, and I have even been learning to play golf, albeit restricted to rounds of 9 holes as limited by my fatigue. Having done all of this, and with my cancer levels low, I feel as though I have had a little ‘cancer holiday’. I’ve appreciated it and am grateful. 

Sadly, that holiday is now over. Its confirmed the cancer is on its way back up. Advice in late December from my doctor suggests, “we don’t have to act over Christmas!! Early January will be fine”. Awesome 😳😳😞🤕!!!! So my doctor says that I have several options:

1) Fingers Crossed Option – another dose of cells from my brother. However, this time I have no data on efficacy, and we would just be hoping my bro’s cells attack the cancer and don’t attack me.

2) The $$$$$ Option – Source a drug called Daratumamab from the pharmaceutical company Janssen at a cost of $10-30k a month. Ideally cocktail it with other drugs but I may have to pay for them too at an additional $10k a month. 

3) Waiting Game Option – wait for the cancer to get really high so some PBS (government) funded drug becomes an option.

Happy days.

I have recently sought a second opinion and it seems the best option is the $$$$$ Option, however, the costs are crippling. There is a glimpse of hope that I may be able to get access to these drugs at a significantly reduced cost, perhaps even free, so I am sitting here with legs, fingers, toes, hair and eyes crossed!! Being confronted with an ongoing monthly bill of between $10-30k is frikkin ludicrous!! I know many people are in the sad position where they have to navigate this, but WOW!! I have a renewed empathy. Not only does one have to deal with the mind cramp that comes with having a terminal cancer, but to also throw in that you could lose your livelihood as well….. gimme a break!! The real kicker is that there is no promises that the drugs will work!! It kills me to think that there are people out there that have lost their homes to this scenario, and in some instances, then died from their disease soon after.  

Being honest, thoughts of $$$$ isn’t what’s keeping me awake at night. I know I’ll find a way there!! What has me quite scared is that I am following the statistical case studies whereby I am gone before my 50th birthday. As a 45yo, it’s freaking me out. All the things I would miss, and all of those that would miss me. I am finding it harder to say with confidence that I will dance the funky chicken at my 80th birthday!! I am finding it harder to stay unwaveringly positive, and to believe. I just haven’t seen the evidence for me reaching 80, but have seen the evidence of young loss!! Please know that I don’t share these thoughts and experiences for sympathy, more so for your understanding and so you have a glimpse into this reality. Please also know that whilst I do waiver, I will (with your support) find a way to remain positive and to believe. What else is there?? 

Take care

Geoff

Edit: I expect to know in a week how much the drugs that I need will cost.