Our team that is you guys have been conspicuous in our fundraising overachievement!! and there may be a chance that I get interviewed and share some of my story of which you guys are a huge part. It’s hard to express how thankful I am to have such a great cheer squad who I know are there for me no matter what is taking place in my slightly dysfunctional bits and pieces!
I shouldn’t be too hard on myself even my neurologist is now surprised at the fact I have enough movement in my left foot to transfer to a chair or even get into car or to the toilet from chair/bed let alone negotiate stairs into and out of house the toe drag is still frightening though and while to be celebrated actually being out of chair and moving, I am freak’n the whole time. in short, it’s just bloody scary. But folks a bit of news for you. Life wasn’t meant to be easy, so deal with it draper as Christine reminds me! and she is right, there are no free rides so don’t expect one and you’ll be a better person for it! it’ll lead to this awesome character trait called resillience… I have managed to get a few milestones in which is keeping me pretty stoked. William has handed in his assessments for uni, Zac had his 19th Birthday and is in his own final mile leading to end of school. Even better is that Zac has created a number of pathways from school into full time work and follow on qualifications that Christine and I know will have him set for life. Work aside. what matters most is that both boys hit the mark in our view of the universal #1 human trait of just being a decent human and no it wasn’t luck it’s been a labor of love (read: consistent hard work from the time they popped into our lives in just a few weeks they’ll both graduate. It was all I’d hoped for at diagnosis. which none of my treating docs would commit to. So grateful I am to be here to see it! You see how I did that? failing body shit outlook (prognosis) and a wheelchair, and yet I know there are good and positive things that surround me I just need to look for them! Are your eyes open enough to see your own awesome?
In more good news I am close to a wheelchair assessment to help with the back pain and lock-ups I have been experiencing because as you know
Zac has been my driver alot these last few months, thxs mate!
i don’t like drugs so loading on panadol even shits me I want the cause treated not throw more chemicals at the issue
I am trying to help around the house though!!
In other what is trashed in bullet’s body bingo this week…. my leg and arm are vibrating and doing their own thing with increasing regularity. it’s no less disconcerting but just another thing to be aware of! the sensitivity of my left side is getting orse. and slightest cold touch is excruciating I also now have a habit of hitting my face on door frame as I am moving into the bathroom. I haven’t bruised yet which I consider lucky… the left sensory issue also affecting mouth now and even eating weet bix with cold milk and fruit this morning was a bit painful. seriously can’t win a trick! but it’s food so I worked through it!!
Please send me your walk pics and I will try to pop them up!!
I am slowing up my weeks a bit due to getting tired easy…. like at 0730 I can easily go back to bed now for a few hours. yep makes me great company for the family….
Christine got me out to the last weeks Brain Tumor Support group meeting run by BTAA it was nice to see everyone. There was a new family there, who are three weeks post surgery, and with him a similar age to me. it just makes you ask again WTF why so cruel. prime of life everything to live for. but as above. not everyone gets the golden eilly wonka ticket to life. sometimes life is just not easy so we just need to show up each day and be your best you. my advice stick with it. you never know your real strength until tested!
Christine’s three boys in the one place for a change!!
It’s been great to have William down a few times now the thesis is handed in.
stay awesome, look for the good/positive everywhere, and hug your fam bam
after physio we drop into shops to grab a few things and in the transit across the footpath there are a fair few bumps, which start everything vibrating, including unbeknown to us, my left foot so we get inside onto the smooth surface Christine sets me up in front of Sushi place and looks down and says wow your foot is going off! I look down and yep that was the reason why I was sitting not moving but still vibrating away! My foot was going at it still in time with where we were everything still bumping away. he quickly jumped down and did all we know to stop it. and that is pull back on the toes to stop it. Thankfully, it got itself together and calmed down!
Seriously my bits are starting to do the weirdest shit!
Now thanks everyone for huge support for the upcoming walk 4 Brain Cancer. our fundraising read your efforts are hugely welcomed and the awareness you are sharing is even better, so thank you!!
Stay awesome, look for the bright side there’s fun everywhere, hug the fam,
Bullet
In other what is trashed in bullet’s body bingo this week…. my leg and arm are vibrating and doing their own thing with increasing regularity. it’s no less disconcerting but just another thing to be aware of! the sensitivity of my left side is getting orse. and slightest cold touch is excruciating I also now have a habit of hitting my face on door frame as I am moving into the bathroom. I haven’t bruised yet which I consider lucky… the left sensory issue also affecting mouth now and even eating weet bix with cold milk and fruit this morning was a bit painful. seriously can’t win a trick! but it’s food so I worked through it!!
Please send me your walk pics and I will try to pop them up!!
Yep we have added some new team Draper/Bullet members! And in extra awesome news, they are a great gang of absolute Angels. Today Christine and I had a visit with the staff at Clare Holland House who have been providing in-home Palliative support these last few weeks. A few have had a read of our blog here, and held on tight for the ride, and have even got a bit out of these ramblings. Remembering that you guys who’ve been on the trip, kind of are used to my stuff, and maybe slightly less confronted by my position and future choices. In saying that, these new team members are pros in (no doubt) dealing with difficult engineers who try and analyse my failing vehicle/body like an F-35 or Super Hornet and make sense of the bloody shambles. I can’t wait to trade this bastard in. I am going to try and cut a deal with the light to come back as a Dakar rally rider, only on a full contract ride as I won’t be cheap. Either that or an Instagram influencer who travels the world doing fuck -all but sharing their unasked for opinions and travel pics. Stay tuned, you’ll see a sign it’s me.
I mean it when I say, angels. Given most western heads are totally scared shitless of moving on, the P word (Palliative) is almost like Harry Potter’s arch nemesis who we never mention. So I already know I (and the fam bam) are in super special & supportive hands The main reason we wanted a wander was to ensure that I had walked a few corridors, seen the exit doors, etc. Reduce the anxiety/stress load when the holiday begins. The bottom line is that while this whole debacle has been running at speed for three years. and I have worked hard on my mental fitness, I still have issues with anxiety so getting early situational awareness (SA) can only help me through this next phase….(did I say though that I am a superhuman because I am falling on the far side of GBM stats. for kicking on this long? as I am in the small percentage of GBMers who get to 3 years
But Let’s not be dumb though as even I am not immune to what this all means. So I am very appreciative of the time that the Clare Holland team invested in us to show us around. Remember that time is the only thing that you can never get back once it’s spent. So big thank you to my newest team members.
MRI result
we also sat with Dr Dua again. Divvi reported that there were no surprises and that the bastard up top still pushed the Avastin aside and picked up another 5mm. basically same as last month. He did say that we now know that treatment and I just don’t go well together…. so that is that no more Avastin trauma. Thank fuck for that… as we know that the last few weeks have been nil fun. Christine and I are now heavily focused on quality, and having each day as low impact as we can. I have been described in my career as high-speed low-drag, and this Moniker I will now gladly own. I want to keep this as simple for my girl as I can as she has dug way deeper than most spouses would ever even consider at contract signature let alone do.
Random thought, medical disclaimer…. this is not medical guidance, ‘I reckon that a reasonable sub for reflux medication may well be chocolate. while it hasn’t worked yet, it tastes better
A great quote to round us out, and for us all to meditate on this fab weekend… ‘Do not fear death, But rather the inadequate life’ – Bertolt Brecht
Stay awesome, beware How you SPEND your time, Hug the fam bam
What I have been desperate to do the last 2 weeks: Ride my mountain bike Go for a motorbike ride Go to the gym Go for a run Mow the lawn Sweep the back deck
What I have not wanted to do: Get help to get dressed Have to be washed and helped into bed Have to have help to cut my food up Talk to another fucking doctor Ask how the picture (MRI) looks Discuss how many more Avastin treatments I am willing to put in for, (hot tip, I am close to done….). Get my weekly call from the Palliative care team to discuss how I am going, (even though they are awesome and so very supportive) Have to get help to get up and down our couple of stairs to get in and out of house. Drag my useless fucking left arm around. Having to eat super slow so I don’t chew the fuck out of the inside of my non-feeling left side of my face Be supervised
I’ve never asked for a lot here, but today I want you to genuinely think about the seriously small shit you think is a big deal.
I’ve generally been pretty good in the head, but the last few days for some reason have left me in a total state of emotional emptiness. Christine copped a full breakdown last night over about 2 hours. I even relented and broke out a tablet to help with a bit of sleep. It worked, small mercies.
I really need to work hard to be that best me over these next few days… I now realise that there is a real link in your physical fitness and mental fitness. So do your head a favour, put your fork down, get off your arse and go for a physical activity to keep your head in check.
Stay cool, enjoy putting your own socks on, and hug your fam,
I will give an update on the last few weeks and see where we get to. In our last juicy episode, everyone found out back to Chemo it was. As I was called by my Medical Oncologist on the afternoon of 2 June and informed of the fun to be had. Racing off from work to get blood tests so that pills could be issued the next day. You guys may recall that a part of the Chemo process is the blood test to see where all of your levels are. Important things like how your immune system is going, and also how are your organs functioning while on chemo as the stuff is in general not great for your body.
The pharmacist at the Icon Cancer Centre in Canberra is super lovely and has been so nice to me whenever we meet. However when she came out and said hi Nathan, my response was, ‘Jenny you know how we last spoke and what I said? That the end of 2020 was the last time I wanted a professional relationship!!’ She laughed as I am sure she has heard it before. But it was true. The last time I got that stuff I could not wait to get my arse out of that centre. Going back there for doctor’s appointments is well enough.
A bit more trivia for you, I went straight back onto the 80% full dose that I was on the last time I took the Temozolomide. I didn’t get a ramp up, it was just straight back to where I was. I am also trying a different style, starting them on a Friday and also in the evening, before dinner. It stuffs the family around as it means I am on a strict timeline for no food, then food between tablets and eating etc. But I wanted to get away from mornings, as I was really struggling to get the tablets down mentally in the morning, not long after waking. So Saturday morning, I made the most of my ok stomach, as Christine already had a walking and coffee date with her girlfriends, so I went out with Mick for breakfast (he was all I could muster at short notice!!).
But throughout the day, I could feel a few stomach grumbles, and then by Sunday it was all back to normal. I attempted to work on Monday and didn’t go too bad, even getting into work. But Tuesday was a definite non-starter, and by my scheduled GP appt I was off the hook for the week. Our agreement is that I will do sick leave for the chemo week, and look to the following to get back into it. It was good to get a bit of clear space to deal with stomach and headaches. And by the end of the week, I was almost starting to be ok, But by mid-week, Christine and Zac had come down with, … yep COVID!
So I pulled my britches up and attempted to look after their food needs as we were now in Isolation. Lucky we had only just done a food shop so were looking pretty. We also had Dad down the road and Aunty, Uncle and miss Charlotte on standby as we needed. Also a heap of offers of help too, so thank you, everyone. Even with separating beds, making them stay at the back of the house, and masks at all times, it didn’t work. I got COVID by the weekend too. But being in a slightly different situation, Defence medical and the ACT government kicked in and I was provided access to the Anti-Viral medication Paxlovid.
So Caz was to the rescue with the COVID centre at Canberra hospital with a COVID care package full of stuff, a drop into Medical as well, and a full show bag of gear for me. I finished the anti-virals today. This stuff is heavy duty. Terrible metallic taste throughout the whole time, which helped to feel nauseous throughout, but can confirm nil COVID symptoms!! But what this amounted to was feeling like crap from the start of chemo through the following few weeks. But the good news is that I feel pretty healthy to get into Chemo again on the 1 July…
Oncologist Follow Up
Friday just gone we had a call with the Medical Oncologist Dr Dua (Divvi). He is a good bloke, and pretty straight to the point. Christine has started again coming to appointments as with the bad news shit, I switch off after a certain point through the appointment. She even takes control of the phone. I think it is right to summarise the discussion with:
my medical team held a multidisciplinary meeting about my scans
Neurosurgeon – Rebecca
Radiation Oncologist – Angela
Medical Oncologist – Divvi
there is very likely regrowth taking place. Rebecca was sure about that, but the other two were a little more unsure. Given my dealings with her in the past before surgery, however, I trust her eyes here. Given the location and the changes noticed (‘subtle, and dispersed’), surgery is definitely not an option.
Radiation was not recommended or able to be done due to its dispersed nature.
All agreed that the best (only) option was to go with immediate Chemotherapy due to how it responded last time to the 12 months of Chemotherapy.
The obvious question was will it really only be two cycles, and the short answer was ‘no a minimum of six cycles’, and see where it lands at that point. ….and this was about the point that I switched off, pushed back on bed and rest was a little blah blah blah. I didn’t want to hear it. Honestly, I knew it was a zero hope but I just did not want to hear anything other than two cycles. Call it catastrophizing, but I just do not do the drugs well. I’ve said it before I don’t even like taking tablets…. But I am now in a position where I have no other choice, I need to get this done. Because in reality the other option is hey let’s do nothing (there is always that option) and see where this shit leads us?
So I did what all strong men do, I went into the toilet sat down had a short cry. All those questions came back up, here we go again, no control? Has all the effort to be fit and healthy over the last few years even been worth it? And I even got to when does this all end, and what does that look like? I know how shit this has been for people around me, I will maintain that I do not want to be more of a burden than this shit has already put on our family and my friends.
I then waited for CD to finish work while having a short lay down on the bed, but that fell through as it started to get dark. So I thought I will go and light a fire. I lit the firepit and was just pissed off, cranky, frustrated and a whole heap of other stuff. However, I now know that behind all these emotions, I am just plain scared again. Chemo to keep going is shit, full stop. But as Christine reminded me, mum did that for ages, my tough cousin Kimmy has been doing it for a lot longer than mum did. So I should stop moaning and just deal with it, because this is what has to be done.
All of this is true. Luckily my workplace is really supportive and with their support this time (COVID aside) I will be working three in four weeks for the next few months. I am hoping I can work out a tempo that I can get into that works for family, and work that will suit my body. Functional is not what I am aiming for, but that may be what I achieve. No matter what and all other shit aside, for now I will just keep showing up, and see what the day brings.
Enough of the pity party, back to work tomorrow out of isolation, and I will do a light gym session too. Yes deep down I know working my body both light and hard is required to be the best me.
The smallest things keep you going in these times. Belly and Danny popped up and gave me a cool gift from their recent trip to Thailand. He has been trying to get together since he got back for a coffee! Anyway a COVID visit it was a few metres back from the door!!
So very thankful for mates and all they do. Sometimes it is just small things.
It’s been a tough few weeks. Since I last posted I have only just realised that it has been a bit harder than I thought to push through. What totally tilted me was the Canberra hospital again ballsed up my appointment. I really wish that I had been getting my MRI’s private. This shitshow needs some attention. Appointment booked three months out. Because as most of you know I freak out if I do not get my scans on date set by the specialist. So we get the referral in when I see him for the last scan review.
I was called to set up the appointment and when I get there, didn’t have it in the system. It’s frustrating. But leading up to this one my head has just not been in the game. Work has been crazy busy, which at least helps me not to focus on me. I rode my bike to Melbourne which trashed my body and got me a bit tired too, but more on why that tired didn’t matter soon. So tired led to stressed which led to anxiety and the spiral basically fucked me up.
It is hard on all of us some days to keep our shit together. I of all people know that. But it still makes me no smarter in doing a good job of looking after my head and managing it all. I do always remind myself that it is ok to have a shit day, but don’t stay in that shit day (in your head) as it will only get worse. Work is a small vent for me, and I have been quite active at the gym 3 days a week before work. The 5 am starts are probably not helping my tired state but they are worth it. It takes effort to build a set of guns, and I am willing to put in the effort.
Unfortunately at the rate I am progressing I know two things a) it’s going to take me a while to build them big enough for anyone to notice, and b) a bodybuilding career is not on my horizon. Primarily because I like cake and donuts…..
A big bike ride….. Melbourne here we come!
I said I would get to it. A few weeks ago Jim (from River Heads Nth of QLD) said he was going to visit his mate and fellow course member from joining RAAF all those years ago in Melbourne and did I want to come. Now, this was no ordinary friend. Because before Christmas Jim called me and asked if I could call a mate and say gday as Pete had been diagnosed with a GBM4 and was starting Chemotherapy and Radiation was underway.
Seriously how many people have to get this shit in their heads I thought straight away! Like me, Pete’s life really sucked at the time I called and said gday to Pam his lovely wife and just like Christine amazing carer and #1 fan/cheerleader. I got to have a good chat with Pam, tried to answer some questions (like we all have early on in treatment), but more importantly provide a light, that as tough as each day is, it’s another day checked off on the treatment roundabout. I talked with Pam, as given the position of his tumor, speech and words are a bit of an issue, and still are.
So, with that in mind, I had no choice but to get on my bike and roll to Melbourne. This was a very big decision for me. It was the first big ride I had been on since getting crook. You all may recall that I was preparing for my tassie trip and packing bike when I had the first big seizure. But more, I would be leaving the safety of Canberra and home, the hospitals and doctors I know and the support mechanisms I had built up. So mentally the start of this trip was very hard. I also knew I had a totally not right bike for this trip. If anyone has ridden a 250 trail bike for more than an hour you know what I mean.
But, this was important for me to show up. I need to keep doing this type of stuff even this long after the shit show happened. My main challenge now daily is the head game. Some days the small things, other the big things like getting on that bike and riding 9 hours day 1 through dirt and highway roads to get to the outskirts of Melbourne. But like most scenarios we create for ourselves it turned out the opposite to the pictures in my head and it was great fun! The best was the dirt. Because I had the smallest (lightest) bike, I wasn’t the slowest. Now I did nearly stack it twice, as I was having a bit too much fun. But I don’t think I lost too many skills in being off-bike so long. I do need to slow down though that’s for sure!
We spent a wonderful lunch with Pete Pam and their family. What struck me was just how awesome they all were. It again highlighted that Cancer has no limitations on morals or ethics. It will just grab hold of who it wants in an exceptionally non-discriminatory way. From that respect, we could all learn a thing from it. The lunch was outstanding (I’d go back to that restaurant!!). Here is a few pics.
Ray, Ratty, Pete, Gino, Jim and the best looker there on the end…
I worked with both Gino and Jim when I first got out of my training in 1988 so was great to see Gino again. I am lucky to have Jim (and Sonja) with me through this time. Good mates are hard to find, but we find each other.
Me way off to the end standing on the pegs to be seen!A warm hello.
After our lunch and a relaxing dinner with Bruce who I joined the RAAF with as well, and a good night’s rest, we all bomb burst and went different ways. Jim’s brother Mick and I went straight up the Hume highway. This was a big eight-hour slog on a small bike with not a lot of wind protection. By the time I got home, I was exhausted. I am pretty sure even my toes hurt as they were hanging on as well.
But it was worth the ride and the pain! I know that Pete and Pam got a boost out of it, and so did I. I expanded my world again back to a bit of normal. Christine knew I was worried and she pushed me hard to get it to happen. She knows when to do that, and when I can do it even though I still doubt myself, and am having an internal battle. Jim and Mick gave me the reassurance it’d all be ok once we got on the road. The outcome was good because I showed up and just had a go. I’ll say this doesn’t necessarily make it easier, but still builds back the confidence, and helps settle the negative chatter. I think in this situation we just create a bit more negative chatter than the rest of the population!
In other news, Zac and I rode our bikes into the city while the enlighten festival was on to try some nighttime photography. He is very smart with a camera, and is doing photography as part of his yr 12. I always wanted to be creative but I am not really. So he encouraged me to go on full manual on camera rather than rely on internal settings and the results I was really happy with.
The people who get great shots I envy. But these were a good start for me.
I’ve thrown a bit down. This last month has been a slog. My new scan date is next Wednesday 30 Mar, and I get results later in the week. I am hoping that the phantom feelings I’ve been creating in my left side will settle down. Another head thing. They have been getting worse as this quarter has wound down, so I am looking forward to the scan and getting it done. And looking for the usual stable feedback.
I am heading off to a BTAA meeting today to catch up with the group. It’s been ages since I was able to get to one with a heap of clashes over the last few months.
Next weekend to continue to push myself, I am off on another ride around the Snowies. This time to support the Kevin Walters foundation for childhood cancers. This is the 25th and last one, and I have always wanted to do one of these, so was glad that I was invited by great mates and big supporters Rob and Rachael. I will again thrash the little beast and hope that I don’t hold anyone up. But at least I will show up.
That’s the message I want to leave you all with. You can win some days by just showing up. That stuff you are scared about, a good presentation, a tough deadline, a big day after a night up and down sorting out little people. You are your best you when you just show up. Because by showing up, you at least put yourself in the position to be there at the end, including being a huge success. But if you don’t show up, to begin with, then you can’t be there at the end.
Stay Awesome, just show up, and hug your Fam Bam,
Bullet
p.s. I also this last week had my 52nd birthday a milestone we never thought I would get to.
Yep, as I sit here writing a post to you all it’s almost a quarter of the way into the year. Seriously where did that all go? And with that I will certainly say, maybe as you would think, this year has been a bit distracting.
COVID-19 sort of slowed then got going again. But thankfully the government pressed on and for our Australian landscape with our high vaccination rate has opened up again. This has been a progressive road to a semblance of normality. In the background though for the first part of the year many parts of Australia are hit by floods this time. I remember two years ago where we were all in masks due to fires and smoke so bad it was tough to go out. All while undergoing Chemotherapy and getting through side effects of Radiation therapy.
Anyway, this year we have had so much rain in the eastern coast that a huge part of Australia is now cleaning up of still watching their houses underwater. It’s pretty awful to watch. And after living through the 1974 floods and helping when I was a lot younger with the State Emergency Service with people with all forms of storm damage. I had vowed to never live in a low-lying area. Apart from not liking work (cleaning up), I couldn’t bear to watch all that you had underwater and just plain starting again. Not to mention insurance premiums…
And now, all the while we all watch on to an unstable world leader hell bent on bullying the world and killing innocent civilians, all so that he can try and return his country to some sort of former glory. The situation in Ukraine is past horrific. When you invade a country and then target women and kids, but worse take pot shots at an operating nuclear reactor, it would be hard to class you as stable.
And all of the above, has reinforced to me (in a way) the situation that I find myself in, which is similarly out of control with your destiny. So many people are just out of control and finding themselves hanging on for the ride. I have got myself back in a way to a bit of a groove, and feeling mostly ok. This period has certainly taken me to really think again that we aren’t in control despite our best efforts. I am happy for you to think that I am deluded, because there will come a point where I know you will feel it to your centre.
The main thing is for us all to get up each day and put in the best you can. Throw your knees out of bed and if they feel good, then get up and into whatever is in front of you. Don’t ever think that someone else has a perfect existence, life tip: their is usually a lot going on behind their Instagram pictures. You can see this now in people’s eyes on tv when they are getting interviewed. The fear, anxiety and the broader not knowing what is going to happen next look.
In my own case the fear of unknown led to lots of anxiety, and then with chemotherapy each month the fear of the known set in, because I knew what was coming. But over time I got a little used to it and that just became a constate of well let’s just see how tomorrow rolls, but I always held close that no matter what happened today, that tomorrow was always a fresh go, and it would be better than today. Sometimes they were better, sometimes not so. But over time from trend perspective, tomorrow was always a better day. It may have just taken a few tomorrow’s to see that better day.
This week I got back onto my motorbike and for the first time since 11 Sept 19 I rode to work. Not in the tin can. If you have not tried motorcycling you are crazy. It was so nice to be on the bike starting and ending the day. I need to do this more, as soon as the weather allows I will be doing it a few times a week! My bike is not optimal as a commuter, but I will work it out. For anyone suffering a little now, it really is the small things that connect that can make your day. Let’s face it we don’t win lotto every day!
For my own health, I am back in the tube late this month, I will let you know how it goes. I feel ok mostly apart from really tired from work. But getting promoted into new job has been just plain busy. I’ve also been given a huge task to just get done in the next few weeks. I am no longer thinking that my profession is as a Systems Engineer more political strategist, chief cat herder, and bulldozer operator (all at once) and in a technical environment. I enjoy the challenge, but sometimes the challenge enjoys me more, and just spits me out at the end of the week. The hardest part of everything is really the longer game of dealing with the head, that is while my body holds up, and the thing doesn’t get active again.
My psychologist thinks that I should be setting goals for a longer term. I am not really that keen to be honest because I had those before and they really didn’t get me too far. So I met her in the middle and said fine, I would like to see out this posting (end of 2024), that will align with my medical board again, I am happy if Defence then flick me and I can draw a pension for 12 months (just to say I did it). That’s my goal, if I can do that I would be happy. My short term goal (which was long in 2019) is to see Zac out of yr 12, and William graduate university. These coincide at end of this year. So I told her I have 2 goals…. Irrespective, I am still getting to the gym a few days a week, I am riding bicycle to work (trying for a day a week) about 52kms for the day (I also hit a max speed on the trip home last week of 65.6km/h), and doing some light running as well. I started park runs a few months ago and got a personal best last week, 24mins and 49secs for a 5.1km circuit. That I was pleased to see. Once the rain settles I will also get out to a MTB ride on the weekend too. Zac and I got out for a quick ride a week ago and I always love the two wheels feeling, even without an engine.
Sunset over Bonner
In amongst all this stuff, recently we’ve been so lucky to see some incredible Sunsets which even I can get a good picture of. Here is our house one awesome evening. I think that the way light works you get about 3 min window for beautiful shots like this.
QLD Trip
We have done a small road trip before all the weather and caught up with Jimmy and Sonja at their retirement retreat in River Heads, a really nice part of the world. You can throw a rock to their place from the Fraser Island ferry launch point (if you have a really good arm….).
MTB time again
I was lucky enough to get out MTBing with my niece Ava while the big boys went nuts at another area, on our trip to QLD. We had a blast and I really hope that Ava remembers this time and her first real MTB ride and stays close to bikes!
That’s probably enough from me as you’ve likely given up reading now! Speaking of which I have knocked over another few books which I need to document on my list and do a few words on.
The year has almost come to an end and as always this group has shown a huge amount of support and continued strength throughout the year. With my families support, I recognise and acknowledge that I am very lucky. I have said it before and will maintain that there are plenty of people far worse off than I.
Some great awareness-raising by Kev and Daz
A couple of rock-solid legends, who have stepped up to the plate are Kev Le Poidevin and Darrell Greig (a.k.a Kev and Daz). Zac and I did a quick trip to Sydney yesterday to visit the boys on Kev’s Boat Rogue Wave. He is again entering the Sydney to Hobart this time in the new class of double-handed, hence the two of them! Kev was one of the first folks to get in touch with me when I got crook and has been a solid supporter, as many of you are. This time though he has gone above and beyond. He asked if I could provide an organisation that is worth him raising a bit of money for.
The boys and I on the old Rogue!The transit from Port Stephens to Sydney Cruising Yacht Club
This was a super easy ask, I straight away thought of the Brain Tumor Alliance Australia, BTAA. Now many here will know that I go along to support meetings with BTAA on a monthly basis. These guys are a great team, and together form a good network of folks in which to stay connected to, or even just touch base with when folks have questions about this whole brain-tumor/cancer saga. While many organisations focus specifically on charitable donations for cure, what makes the most difference to patients is the here and now. Trust me when I say as an Engineer, I more than get root cause analysis to reduce those here and now moments. That is if we get a cure then we don’t get patients….
But for now where we need valuable resources is for appropriate support to that person sitting in an office with a surgeon who says, ‘I am really sorry to have to tell you this but it is brain cancer, and the stats say you have about 12-14 months’. Because in October of 2019, that person was me and my family. I was lucky to have a specialist cancer nurse (where brain cancer was just one of her jobs), come and be with me and the fam within 30mins of that discussion. She helped with advice, and support when it was needed the most she also pointed us in the direction of BTAA. A support network.
Now for those who really know me, you’ll well know that I am not a ‘group’ kind of person. However, in BTAA I found a real community, where we can talk exceptionally openly about this stuff that needs to be aired out. Where no one is surprised by the stuff that we say, as it is not usually news to those who come along. And we can just layout if we are pissed off with dumb comments from well-meaning people, or just plain people who don’t get it.
Kev has also been a long time supporter of Soldier on as well. Who coincidentally were also a big part of my getting back up on my feet. I was recommended to go along to my local group as they did activities that would keep me busy. So I went to the Canberra group. We did walks on weekdays, sat and had a chat, and I even got to do a 2 day MTB training weekend. These activities gave me an aim point. When I was down and being wrecked by chemo, I had something to stay in the race for, a direction of getting up and out of the house for a walk. Sometimes it saved Christine the effort of cajoling me after she had done a big day in the office too.
Both of these organisations are amazing. They do work that largely goes unnoticed, and I am sure that while the people know it is important, sometimes they don’t know just how important it really is.
Why it really matters to me is that these guys are again about to be in a similar situation to me in a number of ways:
They need to be stayers,
In the small boat that they are in, they are at the mercy of many factors,
The control they have on these factors are largerly out of their hands,
These guys just have to show up, each day they are on the water no matter how they feel, or how their situation looks, they have to be there,
No matter what, you can be sure nothing will go to plan, so they are agile in the thinking and responses,
And their environment is not as safe as many, while they are out there bobbing about. So bad choices can have large consequences.
They know that nothing is predictable,
They have an aim point, an eye on the prize of getting to Hobart,
Every action gets them closer to their aim point.
Yep, these guys are legends. And while many have told me that I am brave and have a lot of tenacity, I admire these blokes for their ability to commit and face this challenge. To hold firm in their resolve to do it, and to remain calm in the face of real adversity for their time at sea.
Please consider doing something small everything helps and make a donation to the boys, as what they are doing is a massive feat in itself sailing to Hobart well off-shore. They are self funding their race, so all the money goes to the right places: – They have a justgiving page kev-n-daz-2021-sydney-hobart-rogue-wave-for-bullet – And also a Soldier on Page Racing-for-our-mates
I even get a mention on the side!
Kev looks like he is doing some interviews on his efforts in support of me so the race promo people have lined up interviews that you can watch on Boxing day (Race day) Ch9 at 0710h I am assuming on the Today Show (?), and Fox Sports 0915h. So hopefully all goes to plan and Kev gets to be seen and recognised for his efforts, we will get some coverage for BTAA, Soldier On and my page is also on side of the boat! I hope he gets a chance to share a bit of the back story to them just making the start line. It has been a huge effort in just making it into Sydney, the boat is only just back together!
That’s all for now. I am sure Kev will share his tracking on his BlogSpot Either way I will post his tracking link as soon as we get it, so after watching the boats leave you will have a boat to follow all the way down to Hobart.
Stay Awesome, Happy holidays/Merry Christmas, hug the fam bam,
Again far too long between drinks, not that I really do that anymore!
I hope that you are all well. I know that over the past few months I have been in contact with a few folks who’ve been doing it tough. So I consider myself again to be exceptionally lucky and am grateful for how I have been going. Work has kept me super busy, and as I transitioned out of my acting role for my boss back into my normal role, the work there ramped up to where I was anyway!
However, in the last few weeks, I have started to transition into my new job because I am posted for next year into another team within the same program. This is also at the next rank level too so a promotion to WGCDR! Now, I have been hanging in there for a long time to see this. If any of my USAF mates are reading this, our promotion system is quite different and to move from O4 to O5 is a pretty big deal, and for an engineer, I am not too far from average at 11 years seniority. In particular for me with my recent past. I am just thankful to have the ability to put in and assist and do something useful on a day to day basis.
It was really nice that work allowed me to pin on in our last All-Hands meeting for the year with our whole project team. There were a few things that made this special, the first was that Christine came along to replace a rank slide, and as Zac was on school hols he got a free breakfast out with Christine so he came along as well! The other was that our new senior military member and Deputy Program Lead (AIRCDRE) came from our Joint Strike Fighter Program as the Director General. His lovely wife (Suze) was one of our senior logistics team when I was on JSF too. They are both great humans, and the moment was made so much better to have the JSF family link. So to have Damo do my ceremony was a really nice touch.
Not the best pic, but it was great!
I felt weird through the day however, I will admit that it didn’t sit right with me for a few days, by Friday I got a bit more used to it though. I do not know how my head took a while for the new rank to sit well with me. It was really great to have some great support and congratulations sent through from many folks across the program. I was really touched, as some folks were a bit emotional as well as they have been with me as teammates from the start of this cancer shit show.
But onto other news too, and just in time for Christmas. I had an MRI the Friday before last, and as you all know that means the rounds of doctors the following week. And I am lucky and pleased to say that again we have managed to stave off any growth, and my scan is stable with nothing untoward going down.
Proof of a brain…..
As you can see from above the white blob is a result of scooping some stuff out, so basically backfilled. I have some scarring starting. This hasn’t surprised my Oncologist as it is what happens. Overall though the docs are all very happy and likely a little surprised with this outcome all at the same time! But not that happy, as we are staying at three monthly scans….
In keeping with positive news, this time in the MRI machine I was ok. Even a little relaxed. I now realise that I have a process and I am not to change it up. I need time to get there, sit and get into the environment. The previous time was a complete shit experience resulting in a panic attack mid-session. I was really embarrassed and frustrated at the whole shit show. I had been working really hard on just getting these done with no hiccups. It also puts others out as MRI machines are a limited resource. So to have to take a short break part way and gather myself just pissed me off.
On reflection, though I do understand that what happened did so as a result of my emotional response to the MRI, not the actual experience itself (even though it felt traumatising at the time). I control my emotions and my response to situations. The situation doesn’t dictate that response. This thought process is a constant work in progress for me. And I suspect that a lot of society has this issue. Especially with so many so closely linked to social media and the regular feelings of anger, jealousy and frustration associated with a remark on a feed that we find disagreeable. The message here is to just walk on and don’t give it your energy.
Probably like the rest of you, I have been looking forward to the end of the year as I have been getting pretty tired of late. I think that a combination of work and exercise is starting to be that bit too much. A week ago I did 4 days at the gym, rode my bicycle to work and back (52km), and on Saturday did my first Park run 5.1 km in 25m and 15s). So maybe going a bit hard recently. In the new year, I need to settle a routine to get it all in and not leave me too flogged at the tail end of the week. Next year!
So before I sign off for now, like I said upfront a few folks I know have been doing it tough. A fellow in a similar situation to mine and really struggling at the 3 month of Chemotherapy mark. But moreover a really good bloke and work colleague from when I was in AZ, John. Unfortunately, he picked up COVID, got really sick and ended up in ICU. A series of complications had him in the operating theatre twice, losing both legs to severe clotting. When I checked my Facebook page (I rarely do and am thankful to have seen his message on his feed), I messaged to see if he was up for a call.
We connected up again, and we talked for a bit. Now as you can imagine he is in a shit situation, but each day he is getting stronger, and as hard as it is getting used to his new physical normal, he is still pushing on. Like I have said here before though, coming to terms with the internal thoughts and emotions are a really tough ask. I thought as I listened, that he was experiencing all the stuff that raced through my head when I first got sick. I remember it being so hard, and the feeling of total loss is just plain painful. While I didn’t get to speak to his family, I am sure that they are all experiencing similar emotions too.
I did manage to get a joke in with him though. As I said ‘well there’s a silver lining to all situations, and that is at least he won’t have to beat yourself up about not going for a run to keep fit!’ It got a laugh from us both. Further in our conversation, John recounted his last month, in his words ‘it has been a tough one’. His sister (if I got that right) is undergoing treatment for cancer and is not going so great, we all know it’s a very tough road no matter who you are. And while he was in the hospital coming to terms with his own situation his dad passed away.
It again confirmed to me a few things. We are all going through stuff daily. Should we get angry about it or just get up and face each day and be the best we can, even on those tough ones? Well given the amount of stuff, most times it’s best not to waste energy and just get up and face each day. No matter what, no moment or feeling or situation stays permanent. Each point in time moves on, just like our emotions. So why waste energy on what might have been? I also thought that there is always a worse situation than we are currently facing no matter how daunting the present moment feels.
I learnt a great thing to think when in a shitstorm, think to yourself ‘what is not happening right now?’ Which sort of extends naturally to; the situation could always be worse. I will definitely touch base with John over the coming months to see how my mate is keeping up. And I am really looking forward to seeing him ripping about on two fresh out of the box prosthetic legs when he gets the all clear from his quacks.
And finally, you guys may remember a recent book I read, the Resilience Project by Hugh Van Cylenberg (where I got the above para thought from). After two COVID delays, we finally got to see him speak as part of his tour. He was really funny and you could tell a natural storyteller. It was a real bummer, as due to COVID he was not able to hang back and chat with us all informally. There will always be a next time I hope! If you get the chance, visit his website and get a ticket for his next visit to your local area. His message is simple if you want to get a handle on your life, and your mental fitness, then it starts with three things that I have also introduced here Gratitude, Empathy and Mindfulness.
Speaking of mindfulness, I have been doing a mediation session on Friday mornings for our workplace and our small group who are into it have been loving the opportunity. I look forward to doing this for next year and opening it up to our wider team. It doesn’t take much, we only do 15mins. You can do it too. Your homework is to write down three things you are just plain thankful for, they don’t have to be big: – Today I am grateful to be able to do a parkrun to start my day, – I am grateful for the blue sky, – I remain ever thankful for good scan results.
Stay awesome, find something to be thankful for, and hug the fam,
The universe will only ever ask for you to be your best you at any given point. It’s people who ask or expect more.
So be true to yourself and best the best version of you.
If you are happy to sit on a couch all day and that is your best you, and you are comfortable with all that goes with it, that’s your best you.
If it means running 20km a day, every day, and still fitting in family and work and everything else, that’s your best you.
You’re the one who looks in the mirror and faces you. You see the outcome of your decisions. If you are happy with what you see, and who you know you are, as a result of your decisions, the rest is noise.
But if you don’t like what you see. If you see something you want to change, then look that mirror in the eye, and make a deal with that person, to get your arse into gear and be that best version of you.
The noise won’t make the change for you. Your partner won’t make that change for you. Family and friends won’t make the change either. It’s all on the person in the mirror.
Stay Cool, don’t hide your mirrors, and hug the fam,
The Tumor Trip! 