Well here we are again. This week was infusion #2. Jim decided he would come down for a ride on the bike from Harvey Bay. A short 1500km ride and back!! It was so great to have my best mate kickin about for a few days. So I put him to work on wheelchair duty, and we got out and about for some shoppping, a few coffees and he was volunteered for dragging me to the Icon Centre for my second round of Avastin. We both realised how hard a work it is being crook. The infusion process is not quick, and theres lot’s of sitting around. So we ended up with a late lunch!!
And lunches!
Post haircut retiree lunch!
Jim and his brother Mick, then dragged me out for a haircut the next day to save Christine the hassle. So it was a retiree gathering at Raiders. We rolled home and sat out on the back deck for a bourbon and coke just chatting and looking over my kingdom. Life is pretty good!
Ive been really lucky this week with a heap of catch-ups, an ADFA mate (thanks Jo it was a great coffee), and a lovely work colleague from ages ago as well (thanks Michelle).
I have been overwhelmed with support in recent weeks too. My old Mx work team are rocking out to this side of town for a weekly breakfast with me. It’s been great to be a bit normal! The Air Force is lucky to have them as part of the broader ADF team. Thanks, gents it means a lot. They have even managed to get the big boss out for an early start to his weekend coffee by starting on Friday morning with us, thanks Damo!
My immediate team, I just left also all put in for some awesome cards with lovely messages, and I got some yummy treats. I was so lucky. With such awesome treats, I asked Christine to set us up on the back deck on Saturday afternoon just watching the world and munching out! I loved the messages in the cards. I’ve always tried to be a decent person to work around, so I may have been on the right track with the lovely words. Thanks team!
Christine and I got a great visit from Gerry and Kimberley too for a Sunday afternoon cuppa. It was a great surprise that Neaney also had a morning off so bought over some cake for a catch up too. So this week I am exhausted!!
I really want to reassure everyone that I am really ok. I know that the last post may have and in some cases hit a bit hard. ….but I did warn you. None of this stuff is easy, and the rapid adjustment that both I and our family had to undergo has completely not been easy. It was/is as hard as it was to read. However, now that I am one-handed and use this forum as a journal, I need the words to get out. So after I cleared the decks I am good.
Trust me when I say nothing is easy, and I get as frustrated as shit, with everything. …But I can’t change my situation, just deal with it now. All I have is the ability to control my response to the day-to-day shit situations where I can’t help myself. And not allow me to be overwhelmed by all the small stuff. And when I reflect it is small. It just doesn’t happen the way it all used to for me.
You probably won’t even believe me when I say that I have been really happy, quite positive, and weirdly very hopeful. This has got me really wondering why. But I am not looking a gift horse in the mouth. So happy and content is what I will be sticking with!! I’ve said it before I will not wallow in a pity pool and bitch and moan. Nope, not worth it and I owe everyone more than that.
Stay Awesome, be happy (it’s all small stuff), and hug your fam
Like me, you are probably thinking ‘this stuff is getting real’! And you had better freak’n believe that…
REQUEST: if you have any mental health issues, or are a little fragile, go to the top right corner of the screen and press the ‘X’ right now, look after you. as I say ‘you do you’. Because this post will be entirely and unapologetically at times be un-fucking pleasant. I promised warts and all, and this is the warts. I cannot raise real awareness unless people know the absolute real stuff, so here we go…… last chance, just ‘X’ out….
The last post should have everyone up to speed on the shit growing in my head. As I write that I just had a very weird thought. I have cells reproducing inside my body faster than the rest of my body can cope with, and they’re smashing me. And they’re uninvited, seriously how bloody rude….
Lot’s of people have been asking ‘how are, are , and are you ok?’ etc. I haven’t been lying when my response is I am ok, subtext: as ok as I can be, because when I think about it all, I am totally fucking exhausted of this shit show. But what is pissing me off and far more internally distressing is how people around me are. Especially my carers in chief, Christine (I am considering a notification to the Vatican for Sainthood), and Zac who is neck deep in final semester of yr12. Let alone how shit this is all for my big boy William, who is in final yr of Engineering at Newcastle, and neck deep in his own right in Final year Project (thesis), and is on a no-fail mission, as he also is starting discussions on landing his first posting when he passes, with Air Force, which is no mean feat at the best of times.
I am in a head position where the only thing that matters to me is these guys success and support.
Because at this stage and basically for the last 8 weeks each morning has been a real adventure in terms of my (Aircraft engineering words inbound) Systems BIT (Built In Test) Check and what parts particularly my left side is going to be: FMC: Fully Mission Capable, (Green) PMC: Partially Mission Capable, (Amber) or NMC: Non-Mission Capable (Red)
And the way it has been going there’s more Red than Green. And that is basically distressing. I am now at nil use at all of my left arm (read: RED), and hand. Just sits in a sling. All it does is knock shit over as I no longer have the sensory perception of even knowing ‘where’ in the 3D world the bastard is. To the point that sometimes I need to wake Christine as I can’t find it, to cradle it. ‘Now why would you need to cradle your arm at night you may be thinking….’ I have lost so much shoulder support and function that I am at high risk of dislocating my own shoulder with a bump or pull/push. So I am cradling to not get it stuck, and I roll over and it just pulls out of the socket.
I am not going to lie, small things are hitting home my predicament. Only a few weeks ago Christine was helping me to get ready in bathroom. I was standing in front of our mirror, holding my deodorant (that I could only barely take the lid off) looking at my right arm held up, my left arm just hanging across my front. I could not will nor make it lift to be able to apply that sticky shit under my arm. WTAF! Yep tipping point, I burst into tears. About same week, I get in touch with Defence Physio and get an urgent appointment to see if I could get some crutches for walking support. Lucy was amazing, an hour later I am in the office with her.
Christine is in the waiting room, coordinating another doctor, I walk in and see a walker, and different crutches, and just think no fucking way what is going on, I can’t even walk or move unassisted. I again burst into tears, …. awesome Draper you dickhead, so much for strength, before anyone writes it, no, ‘I do not got this…..’. Poor Lucy, she just looked at me and said ‘I’ll go grab Christine’. Thank god I needed my safety net. This past weekend Christine needed to do some weeding out front. So with far too much effort, gets my shit together, a chair, a blanket, phone, puzzle book and speaker as she knows I am happy just sitting in my country music.
Out of nowhere I just started getting overwhelmed frustrated and pissed off all at once. I don’t like being a hassle, a burden or fucking difficult. My mantra is it’s not hard to be a decent human, but I started to get short with her because all I felt was a burden. The effort to get me out just totally pissed me off, when she had important stuff to do. So, yep, I burst into another energy ball of fucking tears. Luckily I got myself together because our neighbour came past and I ended up having a nice chat with him.
I don’t want to hear those words either before you write them, ….. ‘you aren’t a burden its not your fault’, academically, psychologically, sure, knock yourself out, make yourself feel better by saying them because they’re cold fucking comfort to the way my head head operates. Each basic task I need help with takes time out of someone’s time. Think doing pants up, shower, toiletries, food cutting up, sorting out medication, admin stuff like printer management. Transport and going somewhere. It’s now endless….
At the start of this shambles and following surgery, with each small setback a small ray of light (hope) was still there to grab and rip away at. With each step, pedal, pushup, pullup and bench press, I knew I was crushing this bastard to death. 4 days a week to the gym was tough but it was just work, and I owed everyone my full energy and effort to go hard, and never relent. What I am facing now is different. Like I said, nil idea what tomorrow may bring, and that is (in my position) not bloody exciting. Trust me it’s not like I have that ‘can’t wait to wake up for Christmas feeling going on’……
Other stuff is also getting to me, and I am looking at things differently. Judith Durhams recent death and Olivia Newton John’s. The first thing that jumped straight into my mouth and popped out were ‘lucky bitches, they both got 20 more years’. Two amazing ladies who did and gave so much, but 20 more years….. I had a complete moment of wow though. When through all of the gushing from the Nine network on ONJ’s passing (basically focussed on Richard Wilkins total devastation for all to see -totally pathetic, he should have had the decency and self-awareness to go home, but alas pride and ego…… ).
Nine bought on Magda Szubanski to discuss her experience of working with Olivia. Now I haven’t been a fan of Magda, however, her first words again bought out my waterworks. She started after a lengthy throw from Karl desperately seeking another devasted industry insider (aka Wilkins I guess), but she immediately said ‘I would like to recognise all of the other people out there and their families who are living this situation it must be devasting to hear this news as they reflect today’ (or similar words).
Magda my love, you can likely never know how special those words were to me in that moment. All morning I sat watching outpourings of grief and support for Olivia. And all I could think of were my family, and friends (yes that’s you) and what we’re also going through. And so many other people like us.
Yep its been a tough few days. However, as I said to my Pailliative care Nurse and Social worker I will not let this shit consume me. For each of these moments in time, I control one thing, as do you. My emotional response to these situations arise. I allow myself to be pissed off and let it out, then staying that way will do sweet fuck all to change it all back, so I pull up my panties, put the race face on and just accept the help and be that pleasant and polite person, that the world needs me (all of us) to be.
I made my Paillitive team happy as When I saw them this week they expected me to be far worse physically than I was. And I also let it all out and told them how powerless, helpless, frustrated and just pissed off I was, again I cried. They were really concerned that last week, apparently I looked I had my shit so together I think they wondered if I knew what was going on. Ahhh,’no I am like this all the time but I don’t need to mope and complain, as it’s not going to make it better nor easier for those around me’. ‘I told them about how big my pity pool is and could be, but that while I dip my toes in, I will not, nor will I ever choose to stay there.
You see there is that option again. I have as do you, that control to choose your response to the world people and situations. No one else does that but you.
A prime example and another news item that pissed me right off, the recent hype on the ex-AFL plyer Eddie Betts book release and the focus on a training camp (in 2018) where he got butt hurt about comments on his indiginous heritage, and is holding onto it so hard that its getting him down. You see that’s his ego now, it’s not him. But because he just wont let go, it’s consuming him. If anyone knows Eddie, I’d love a coffee with him. The first thing I would do is ask a really simple question, ‘can I have your body, because mine’s fucked’. Then maybe we could talk about stuff that matters, letting go, and comms skills so he can articulate shit with others rather than making those emotions his existence and becoming bitter towards a world that is conspiring against him.
Yep I am running out of patience and tolerance for helpless arseholes who expect everyone to apologise to them for their feelings.
People here is the thing, and I mean it, you have to TAKE offence, offence is not given….. I have never heard in proper english the phrase he gave me offence….. its not a fucking gift! Again its your emotional choice. If you want to take offence its yours to do so. Otherwise leave that shit right where it fell out of someones mouth and on the floor.
New wheels
Thank god that is all out……
In other news I have wheels. My physical stuff (decline) has all happened so quick, that the walker frame for house lasted a week, and the wheeled walker never even got a day out…. Now the wheelchair has proven ok. Its made life for Christine heaps better when we are out. And around home I can be a bit safer and do a few more things for myself.
I want everyone to also know that I am feeling so energised by all of the support that I get from blog responses. I generally have a full dancecard for breakfast or coffee in mornings. Zac drops me off at a coffee shop on way to school and Christine gets a babysitter! The boys from work have been awesome, and no one minds cutting up my toast! My team at work, gave us the most awesome hamper with wonderful messages of support. I know people will think otherwise but I do feel guilt on not sticking with these guys and seeing a huge part of our program through.
However I do know that the path I helped get us on, and my #2 being thrown into the breach will continue the miracle. I was so lucky to get Matt posted in at the start of the year, I owe him a coffee for picking up the role!
Well thats likely enough for now. Next update will be following Avastin infusion #2. See where we land. I might also have a few insights on how the palliative care system operates to share, now before you freak, they are really helpful, and help a lot with support and quality. We already know I will not be a candidate for staying home in long term, as once I go totally floppy, Christine will find it too hard. They also have great drugs to give out too, so that you remain comfortable!
Stay awesome have a great day, What’s your response to every situation?, and hug the fam,
I am pissed off, and that is borne about by resentment and fear. Again.
Two months and here we are. A few things have been going on, I am sure the same for everyone. But I may as well get straight to it. My March MRI that I last let you all know I was doing, results were a little concerning to my Oncologist, and the Radiologist who did the report. So it was recommended that I get another scan in 4-6 weeks. Another cock up with bookings and aligning doctor appts resulted in an MRI exactly on the 6 week mark. Unfortunately getting my specialists straight after was not possible.
All of this led to my asking the Oncologist’s office as I was scheduling my follow up appt to ask that given the delayed appt if he could review the scans and at least let me know if it was just a false alarm. So about 2 weeks after the scan I got a call Thursday afternoon, and the call was reasonably short. Doc says scan didn’t look good, and confirmed earlier scan that something was up. He had already had a connect up with my Neurosurgeon, and Radiation Oncologist and they agreed that it would be a good idea to get started with two rounds of chemotherapy, straight away. They did not think that it would be worth considering Radiation again, or Surgery at this point. Yay for that.
So I had to leave work as the Icon Centre (where I get treatment) already had a pathology request for bloods to be taken that I needed to have done before Chemo to monitor all levels through the cycles. A mad dash to get it done. So Friday morning after the gym (it was leg day, and tough guys don’t miss leg day…), within 10 minutes of packing my weights away I was at medical getting a party bag of stuff to keep my body slightly under control through next few months. Just like that, back on the merry-go-round of ‘how is your stomach and fatigue level Bingo’ for the next few months.
Bloods to be taken
So Friday afternoon after a busy day, I had to bang out early and back to the Icon Centre to pick up the chemo.
Chemo again, a couple of cycles, and see where we land.
And there you go, just like that, here we are. I am not going to hide it, I am frustrated, disappointed, and just fucking pissed off. I don’t want to be back here. the last few years (yes lucky I can use that phrase), have been really hard on my head. It has just not been easy. Any slight feel on left side has triggered me to think is it back? Over the last few months I have had a few headaches, same thing,…. is it back? So getting back into work has been a steady way of getting that stuff out of my mind. Also allowing me to rebuild confidence to actually leave the house, and know I can get through the day, not having to be in my safe cave.
But now after this, it has all come back again.
But what am I going to do? There is no point moaning. By the sound of my oncologist’s voice, this was the option. There’s no lying, I am emotionally shit, but it happened quite fast. Which has meant less think time. However now after the first dose last night, I have to settle in, put the negative ‘poor me’ bullshit aside and just get on with it. I am hopeful that now through these next few weeks and months that my body won’t be as smashed as I was and I will be tolerating it all ok. Although I went straight back onto same dose as I finished on. Nil ramp up this time. Straight back into the saddle.
The last almost 48 hours I have just thought again all over why me, can’t I just let this shit go. But in a huge show of understanding of equity and diversity, cancer doesn’t mind who or what you are. It doesn’t matter that you may be a good person who works hard. There is no consideration of you being a member of society that is trying to leave the place better than they found it. the cancer arrows are indiscriminate. Maybe the world could learn a lesson here from illness?
Through next few weeks Ill keep everyone informed on progress, how I am responding and stuff.I will remain positive, and try and keep on keeping on. This morning went out with Mick for breakfast, stomach still in tact so far. So ill make use of it while I can.
As written by Chris Stapleton in his song, ‘Starting Over’ ‘Now this might not be an easy time There’s rivers to cross & hills to climb & some days we might fall apart And some nights might feel cold & dark’
In better news I went on the Snowy Ride. It was really tough on the small bike, and the weather was awful. But at least I was on the bike. Here is a shot of me coming up towards Charlotte’s pass.
And yes I look cold because it really was!
It was fun though to get out of the house, and onto a ride weekend. A bit of solitude to clear the head was good. But I really did start to think about a bigger bike again, so……
A slightly used F800gs it was!
Back on a BMW it is. A few years old but a nice bike. Depending on how this small shitfight goes I am aiming for a Cape York trip with the boys in late Jul.
And super good news William turned 21. He wanted low key and nothing special, so we went up to Newcastle, and did a celebration at a pub with his mates and Girlfriend Jess. It was a good night, and we sponsored a few drinks for everyone that were appreciated!
Out for a walk around Newy while we were there, Happy Birthday Bill!
Other stuff has been going on, bjt all the while I still get the most amazing support from Christine the boys family and all of you guys. At tougher times I draw strength through these interactions, and I remain ever thankful for your kind thoughts and open ears.
Stay awesome everyone, stay thankful every day, and Hug the fam,
There was a time when I was reasonably confident that this day would not come, for me at least. To see 2021, let alone the 2 year point, is really good.
2 years today, surgery removed the GBM4 growing in my head, this was followed up with Radiation and 12 months of Chemo. It has been a slog. I didn’t realise that I could cry so much. The positive side was that at least after surgery the seizures stopped, I was up to 9 a day even on medication leading to surgery. I have agoraphobia, so having my head pinned down for radiation was totally no fun. But I checked that box. Chemo (temoz), seriously didn’t agree with my insides, but I got that bad boy out of the way too. And finally allowed to return to work this year in March. Which has been going well, even posted now for next year into a sideways role at next level too (no I haven’t been promoted, but it would be nice!!).
I am thankful to be able to walk again, to be able ride (my MTB) again, I am thankful to drive, and I am back on a motorbike too. The saddest days of my life were selling my Harley and BMW adventure bike. I have learnt that tomorrow will be better than today, I know that even if it isn’t, then I can focus on the day after. I know that family and friends give you energy when you have none left to work with. I have learnt that the art of walking is taken for granted. Trust me when I say there’s nothing worse than (in your head) telling your leg to move and it just sits there looking at you.
But with some help from good people, and huge support from my family (my biggest cheer squad) I have that chance to move it now thanks to waking up, showing up and just getting on with it all. I was able to pass my fitness test for work (Oct 19) while in the second last round of chemo, I was even able to run back down the road after I had finished the run (just over 11 mins for my 2.4km) and bring in the last person. I am sitting here writing this after returning from a 35km gravel/road ride on my gravel bike.
I don’t call this situation a journey, because to me a journey is some really cool travel adventure, nope, this is a trip. Nothing planned, some days good, others exhausting.
A positive spin-off is that I have done a heap of reading on really interesting stuff about your head and mental position. You can check out my recommended reading on the top right of the home page. I know I am lucky. I know what the prognosis was. I am one of the GBM4 peeps now on the other side of that curve.
Never let go, there is always hope. You have more strength than you know you have, but most of all always show up. Sometimes you may be having a shithouse day. But that is all in your head, because I have also learnt that about the only thing you control is your thoughts, feelings and emotions to whatever is thrown at you.
It rained on me on my ride today and I smiled, happy to be able to be out there. Even today I looked out at the weather and thought maybe not. But with that thought lingering I got dressed, and I showed up. To get to the end you have to show up. You can’t win or even just complete something if you are not in a position to complete it.
And when all is said and done if you just showed up when the universe sought your attendance, you are a winner.
I have been asked so many times about what I read. So I have finally got around to get them up onto page. I will do some work and place a short para on what I thought. But at least I have it up for you to start doing some reading!
I am really keen to get your thoughts and feedback as you start to get some reading done too. So do a comment as you go.
This is a book by David Goggins, and is about his life story. Click this link to find it on Audible, Can’t Hurt Me.
I tried something new for this book, as I was on a huge drive to QLD and back recently, so used Audible for this book and another. The awesomeness about this book via audible is that the book is read by David’s ghost writer Adam, and the style is totally different to a usual audio book. This reading is book/interview/podcast and a heap of extra context and backstory, that is usually not heard or read by the reader. At the end of each chapter readers are drawn along a journey of self-improvement and reflection through small challenges that extend upon the theme of each chapter.
Before I get into this review, A bit of a warning or caveats. This is a book maybe, not for everyone. Firstly, there is a bit of a language warning, and secondly this guy and his life story is just hyper positive, it may wear you out just reading it.
For me when I read a book, I am looking for the concepts, and the main takeaways. Not seeking offence from a few words here or there that I may not like to use or hear used. I won’t make an excuse for the style. Goggins tells an amazingly gritty story detailing surviving horrific abuse at the hands of his father through to being one of the fittest men in the United States if not the world. To clarify, the first few chapters are a tough read. And through the early parts of the book the reader gains a view of a person at the bottom of the barrel, in fact perhaps even trapped under the barrel itself. At the least a future statistic, or a guy pre-programmed to fail.
As the book moves forward a strength of spirit and drive emerges as Goggins realises he has a depth of strength he never envisaged. As the middle few chapters detail, our physical limitations can be self-imposed walls to achievement of goals and dreams. Goggins realises that his power rests within his mind, both conscious and sub-conscious. His introduction of the concept of an ‘Accountability Mirror’ (yep just a mirror in his bathroom) is a huge change to his life. This is a space where you become accountable to yourself alone. This is a gift (among many) he gives to the reader. You will never look at another reflection of yourself in the same way again!
As the book progresses Goggins takes you on his life journey from a depth few of us could understand to completing the US Air Force para-rescueman training, passing the Army Ranger course, and becoming a US Navy Seal. He is the only person to have ever completed all three armed services Special Forces training programs. His Seal course had to be done three times as you will read.
During these achievements he found Ultra marathons and triathlons and eventually to becoming the world record holder in another discipline. You can read about that, I won’t spoil it for you.
On reflection the three big concepts of the book, are that you can make you, physical barriers are there to be worked with and through, and mental attitude can be changed and is the real key to your future. Without a therapist in sight Goggins looks deep into his soul and mind and works himself out, breaking barriers at all corners. He acknowledges he isn’t perfect. But who is?
I thoroughly enjoyed this book and is my current recommended reading to anyone I bump into!! I defy anyone to read it and not get something from it.
Please read this book, the messaging here is what our soft society is so badly lacking that this read is like a breath of fresh air. For sure a six out of five.
I don’t know about you guys but I am a bit exhausted. Since late 2019 my (and that of my families) world turned upside down, or went totally to shit. With surgery, diagnosis, treatment, all while living through bushfires and now COVID. Not to mention global events like COVID and the US political meltdown has not been fun to observe either.
I think that I have told you all that I have not yet read a word on here after I have posted. Some of it I am sure is painful, some total crap, but at least I am getting it all out. So I would have no idea how often I double up, or say stuff that is meaningful. So my apologies if I am saying stuff I have already said.
The last month or so I have been unfortunately filled with both a sense of peace and high anxiety. Weird combination, trust me.
Peace, Seriously???
Yeah go figure. I am still working through my Meditation book Meditation and In-Depth Guide by Ian Gawler. If you need any inspiration regarding meditation, and various techniques this is your book. I have been asked by a few folks about meditation I am certain that it helps your head, and whole life outlook. With the diagnosis I am dealing with I couldn’t do this without Christine or meditation. Like all people who meditate, especially beginners, I don’t do it enough. But we have already accepted I am a work in progress… I am onto the chapter about Mindfulness of Emotions. So it has helped me in dealing with fear and anxiety stuff. Which leads well into…
Fear, Panic and Anxiety
As I have said the doctors told us in October 2019 that I had about 12-16 months. Fark me, that was a jolt to the system. It really messes you up when a doctor sits you down and discusses a diagnosis like a Glioblastoma Multiforme Grade IV. Most people just colloquially refer to having it as either the monster or more plainly, a death sentence. Awesome, even as that time comes I am overachieving….
However I can count my blessings. Surgery went well 2 Oct 19, I survived Radiation (Nov-10 Dec 19), and Chemotherapy was a shithouse 12 months finishing up on 16 Nov 20. that means I am into … month 16. This leaves me in that place in my engineers head of being told by a medical professional or three, maybe more, that I am statistically on the right side of the bell curve. Like I said the past month or more I have been having no fun in my head regarding this period. What do I do, rejoice, call myself a survivor, pensively wait to fall over again and be paralysed by fear of what it might all look like or when the next episode takes place? Too many options right?
A huge worry for me is that the Air Force is assessing a return to work option for me. What I do not want to happen is let people down. I have had so much support from the system, and also from colleagues past and present. The last thing I would want is to have an episode at work and scare people. It has been traumatic enough for my family, I don’t want to trash someone’s day when they are just trying to pump out work at their desk or in a meeting. While I know it can happen to anyone, I guess in my situation I am just very sensitive to the situation.
On balance though I am so very lucky. I am here, I am able to write this blog post and keep you all updated. I have got through the treatment to date, and pending an MRI in Feb I have had no discernable growth over the period since surgery. I have had outstanding love and support from family and friends. I’m able to get out on my mountain bike and ride, I am possibly in the best shape (apart from small leg issues) that I have ever been in. I almost consider myself a professional athlete given my four days a week at gym! It helps me to not feel so guilty being paid for my rehabilitation.
I have been keeping up to date with a few folks on Facebook and Twitter who are really doing it tough and are giving me so much inspiration and drive to keep my shit together. I know I have mates who consider me a bit of an inspiration for a positive attitude. But if you are looking for fight, tenacity and will, have a read of these ladies efforts Brain Cancer Babe, Libby and I love the sharp wit from Thanks Cancer.
All good to keep a lucky guy thankful for what I/we have. Remember folks about the small insignificant shit.
Where does this all get to I hear you say? Here you go, in an effort to reduce stress a bit and gather myself I have slowed social media to an almost standstill. I browse twitter to see how these folks are rolling and a few others, as it helps my perspective, but I have almost entirely ceased facebook. I check in here and there, but frankly I have been happier without the small bullshit that people are losing their minds about.
Have to stay close to home for COVID? Seriously, try confined to home and taking chemo! Or better try having to stay close to home or at least a restroom because chemo has trashed your guts so bad, well you just never know how much time you will have once notice given to your head…. Home schooling kids tough? Be thankful you have kids to care about, and have the opportunity to spend some real time with them preparing them for life. Work giving you the shits because of your boss? Be happy you have the ability to get to work and contribute to something bigger than you. Can’t go to gym or fave coffee shop to meet friends. Be thankful you are well enough to have a coffee and keep food down.
Sorry but no fucks given, and some of the garbage on Facebook people are moaning and whining about I just don’t need. And you know what? I am happier for it. The shit I read now no longer controls how I start the day or end it emotionally. I catch a little news so I know if the world will end now or tomorrow (news organisations of all sides basically are about sooner rather than later) and that’s about it. Reading some good stuff and listening to things that give me strength and knowledge have been far better for my holistic health.
Check out this guys podcasts if you want a real hit of insight and intelligence slotted into your day when you would normally take that drug called dopamine through Facebook (you know when you are bored and just check your feed, like about 4 hours a day….). Ryan Holiday has some outstanding knowledge and wisdom for everyday use and application on Stoicism. I can’t wait to read some of his work, I will add it to my list but for now his podcasts help me get through the day.
Stay Awesome, use your time wiesly, Hug the Fam Bam,
It is human nature to want to be better, and strive to have more. To accommodate these it is traditional for us to set some new years resolutions. This gives us the opportunity to get back into a new year fresh and to perhaps find a better version of you.
The reality is that this is a great concept until the first day of work, usually in a few days after the new year that comes and goes. You get back to work, and the enormous cost of going away from your desk, or away from work site and the ensuing pressure of ‘getting back on track’ hits home. Killing your inbox, and long hours to get back on top, takes precedence over those resolutions. It takes 21 days to create a habit, so many folks say. So if your new year started with a gym membership and you go back to the 12 hours a day, it won’t work. Save your money!
So here is a different take on the concept. I did a google on top resolutions, and they were largely in any particular order: – lose xx kgs – do more exercise – better diet – make more money – declutter your house/life – drink less
Rather than go out and buy gym clothes (and looks sporty at the shops), or buy a gym membership (and go twice until you are too sore to move), or you can buy a fridge full of good food – that gets thrown out, (did you know that San Francisco alone throws out 700 tonnes of food waste a DAY), or maybe throw out the first two items you see in your house etc. think about these few ideas….
Let’s consider these resolutions: Lose XX kgs Why set a target? Sure for the goal setters this strategy may work. But if you are that person, you will not be needing to do this anyway as you will already be at your target weight. Why not think about lifestyle factors, like diet, exercise, sleep, work and stress factors. You do not need to go crazy here. In our modern affluent society with the worlds knowledge at our fingertips we all know or can search for the changes that we need to consider and make. Once you understand what to consider, start doing it. So be a better you.
Do more exercise You don’t necessarily need a gym to do more exercise. Walk your dog, walk with a friend, go for a ride with your kids, or take them to the park or start water aerobics to get moving. Get into the habit, don’t sit around when you get a moment. If you are honest with yourself, if you sit around and watch TV in the first few days of your new ‘goal’, then you have already buggered it up. You’re now on holiday, so do something today. Otherwise, save your head from torture of not ‘achieving’ anything and be happy in who you are. I have learnt that small changes and consistent effort towards a picture you create in your mind is what it is all about. But above all be a better you.
Better Diet I was recently surprised as I thought I understood a fair amount about diet. Disclaimer here; I am not a doctor, and this isn’t medical advice. But I watched the couple of Netflix documentaries on food the Game Changers, and What the Health. I don’t and won’t advocate a diet to anyone, but small changes can make huge differences. There is so much information EVERYWHERE about diet there are no excuses to feeling shit because you don’t look and feel like you say you want to. I will share a hint with you, portion control and fruit and vegetables are your best friend. All things in moderation. Start small, think about your choices, but above all be a better you.
Make More Money/Get More Money This is a usual one. Jim Carrey has famously said ‘I hope everybody can get rich and famous and will have everything they ever dreamed of, so that they will know that it’s not the answer’. Solid words. I get that there is a sweet spot of income, for comfort and reduced stress. Aim for that, but too much and a single focus on money above all other things like relationships, time with family, and a lack of life experiences will come with regret later in life. Two weeks holiday a year where you put your earning efforts on hold and give some time to your closest, does not cut it, sorry for that… You can say this as ‘I am setting them up for a future’, but this is a bullshit statement for your own mind to justify your focus on you feeling successful, and being satisfied in your own efforts to make more than the next guy. If you want to really set your family (children) up for success, let them know what presence is, and a solid family is. How to spend time with people and make those people feel special because they feel listened to. This is wealth, as it will pay dividends for their life, they will also pass this skill onto their children and beyond. I am a work in progress here as I have focused way too much on work (not for personal gain, but for service). You can be your best you, by being present with whoever you are with. This is a real investment in personal relationships, starting with your family as an example to your little folks, this will ensure you are your best you.
Declutter your House or Life Nothing that you ‘have’ can you take with you when you die. think about that for just a bit. All the stuff you have will be staying where it is when you head off to another place whatever your philosophy or religion. Sure, get yourself comfortable, get stuff for your hobbies but what is the point of stuff to store. Think about this with your future purchases. If you do, this will not be a future goal!! So just get this sorted. Look around your place and what you don’t use, or need for records. Recycle it, donate it and use your local Vinnies/Salvation Army, because someone will actually need it. You can be your best you by actually using what you consumed (the planet will thank you later…).
Drink Less This one can’t be serious, but it is a regular. Alcohol is a double edged sword. It is fun to have a few drinks with mates (I have been known to have a few more than that here and there). But if you are drinking by yourself for the sake of it (starts with boredom which we have all seen plenty of in 2020) then just fucking stop it. Poor you buttercup, you are bored with sitting at home, I have nothing to do etc and all the other piss-poor excuses. Here is the thing if this is you and you end up just drinking then you will end up with head issues, health issues and I pay for you via the public health system. Frankly see above on health and exercise. There is no excuses here. Harden up, deal with your day, grab an apple and go for a walk, ring a mate and have a meaningful discussion, make their day. Coordinate an event like a walk with a friend. But there is no better reasons to be a better you than this one.
You may be thinking that I am a real Debbie Downer here…. But I would never leave you hanging like that. If you can only do one thing this year, then it is almost a guarantee for both better mental fitness and to be your best you. I urge you take up an empty exercise pad or go out and buy a nice journal book and pen and commence a small bit of writing. This is called Journaling. There is a famous book titled the Artist’s Way’ by Julia Cameron. In her book she advocates a daily activity known as ‘Morning Pages’. Now to ease your fears, this is not creative writing, in fact it is the opposite. If it was creative then I would have tapped out at first glance.
This is kicking off the day with three pages, or near it, of thoughts. Yes, just thoughts. So it is pretty easy as we all have thoughts. You just put the pen on the paper and write whatever comes to mind. What is shitting you off, what you are happy about and just generally how stuff is going. I use mine for reflection here and there and to work out what went well (top three for day) and where you want to improve or could have gone better. there aren’t too many rules but the first rule of Journaling is that it is only for your eyes. They aren’t for sharing. the bottom line is that it is cheaper to buy a book and pen than sitting with a psych. Generally more enjoyable and less time to jot some stuff down.
And here is where you can be your best you. Write down you picture create the vision of you. But the important part of journaling is that you hold yourself accountable to that picture. Sure if you want to create goals, fine. But by using words you get beyond ‘I want to be more active’, to writing a bit more and building the picture of what a single line even means. What is more active? Do you want to ride a bike walk around a lake or hike a mountain. When you write down that extra piece, then you do a review, it is you who is accountable to you. You will generate your own steam. Also it will help you to work out what you really want. Because by writing it down, making an effort, you will work out what is really important to you.
So create your picture of you, and be your best self this year. It isn’t that hard. Do it for you.
If you are like me you and your family can’t wait to see the arse end of 2020! While it sucked pretty bad it was a great learning opportunity for us all in many ways. And while our learning experiences all varied, everyone really had similar issues to deal with. What we all saw and felt were our life conditions become somewhat equalised. It didn’t matter how much money you had, it didn’t matter how important you are (perceived or real). We were all confined to our houses for extended periods. Three things kept us at home: rules, fear and personal responsibility. What made them variable was standard of living expected, individual freedoms and political system that you live under. For me, and those who are crook, on top of this was health management and real life uncertainty that far exceeded most.
The Pandemic, and for those of us in Australia, the lead up to it in extended drought and then raging bushfires really showed how we deal with stuff. This year tested people’s resilience and tenacity to just get on with it. Not worry/sweat the small stuff perhaps?
The rules were set by authorities (government at all levels). Which is interesting for those of us in Western Democracies globally. Generally fatigue started to set in with these new rules . We were also able to observe lunacy around conspiracy theories with respect to governments and business spreading the virus for monetary gain, or control over populations. Selfish individualism cloaked in standing up for rights and personal freedom abounded in some countries. What this portion of society did not allow air time for or even thought towards was that sometimes shit just happens. A pandemic is generally a once in a 100 year event, and we got ours a hundred years from the Spanish flu. Who’d have thought?
But these theories were largely driven by fear, even though the people pushing them will not accept this premise as they purport to be the intelligent and fearless side of society who will stand up to the man! Which really leads to loss of control. We in the western affluent countries went from (in our own minds) doing what we wanted, and what we do daily to being restrained by rules, governments and public safety edicts. When a portion of the population were told to stay indoors they lost their minds with the concept of being told what to do and a loss of their perceived freedoms!
Why perceived? Well even in our societies we have rules and boundaries, otherwise why would we have police without rules to comply with? Society has norms and behaviors that are expected by members of society. Sometimes these are associated with cultures (like a country) or even for various classes, or local communities. I have to say this has been lost on so many people who have tried to buck the system, and thinking only of themselves, not even able to consider members of their own families who are at risk.
Now while I love to talk politics, I have very much steered clear of this topic on this blog. However what I have done in the above few paras (that are a very high level summary only) is to build a picture for you. Because what you have now felt in a small way, and I mean really small, is how a person who gets a very bad illness lives with each day, and sometimes as dire as it sounds for what they have left of their time.
So from those of us who have a chronic or life limiting illness, welcome into the party. You are late, but at least you have had a peak into our daily life. Since early October 2019 this has been my world, and that of many others. Following surgery there was the grind of Radiation (and first round of Chemotherapy), a short period to gather myself, and 12 rounds of Chemotherapy. During this time the whole of my world was focused on health and just getting through each day.
Each scan (about monthly) was another waiting game to see what was happening. Note here, that there was zero control or ability to make an outcome happen. I was doing the treatment as told (rules set by doctors), and hanging on to see what the outcome was. All the while living in fear of where this was all leading. The difference here was that as you guys were all gaining back personal freedoms and rules morphed to accommodate such, we have all stayed mostly in the same place.
You will recall from my early writing not long after I received diagnosis and the shit show really got on the road that the biggest issue I struggled with was a feeling of total loss of control. Mainly due to the illusion I was living with. Where I thought that I controlled my destiny, and even the smallest things in my life. Especially a focus (not extreme) on my health and wellness. I had held a good understanding of diet and fitness where I thought that I was in a good position to age and live well. I was even beginning to consider and plan a retirement life and using up my Superannuation. So how/why could I get sick, let alone what I got.
How wrong I was. I have learned that our lives we are given are not guaranteed. That it is important to make each day worth waking up to. I thought I knew, but now totally understand that moments count. Time with people matter, and moreover the words that you use, your mannerisms and body language really matter.
What I have really worked out that not all days are equal. Some days it is a win to open your eyes, get up and face the day, even if struggling with your stomach all over the place and a handful of tablets to throw down.
I have worked out staring into the face of fear, it is not really a barrier but a wall that you can push, and sometimes hit to break it down. There is usually sunshine on the other side too. We torment ourselves with a perception, or thoughts of an outcome before getting to the moment, or even standing on the edge of the experience pondering what might be. Creating fear and anxiety of a potential future that not only isn’t there, but never was there to start with.
I have really learnt to be more present and here right now. I am still no good at it, and that is ok. Like you I am a work in progress as well. I have learned that it is ok to cry when shit gets real. People will understand. Sometimes being strong is showing that you are human too. But what defines us is how you then stand back up and kick in for another day, not wallowing in a pool of self pity. We don’t get enough of this from our public figures.
I have learned looking around and watching social media feeds that too many people dwell in the past, or are shit scared about the future. That they cannot work out how to live for now. Make plans, but be comfortable to change them. Because rarely does life or work go according to those plans. I have seen so many freak about past and what may have been, hint too late it’s happened. If you fucked something up go and apologise and move on.
So when you feel that luxury of lock down fatigue again settling in. Be conscious that you have a choice, because many of use aren’t offered that precious opportunity. There will be and is a future, no moment in time ever lasts, that’s why it is a moment.
So today as you ponder how 2021 may pan out, and finally consider the concept of uncertainty (that yes, shit really does happen), you will always win if you focus on the Now.
Stay awesome, think about your focus on this moment right now, and hug your fam,
I am tired. And after 12 rounds of Chemotherapy on the Temozolomide pills I am also done. I feel a little like when I finished Radiation. I know this should be a celebration, but I am crook again, and really tired. So I will save it and do a happy dance in my head.
Urgh, Temoz not recommended eating.
I am not going to lie, it has been a tough ride. Monthly sickness for about a week and a bit. Each roll of the dice different to the next in terms of level of shitness (I think I just invented a word, it’s an adjective). As each month arrives I have no idea how I will feel or what type of month I am going to have. A few in middle were actually ok. I was lulled into a false sense of yay, this isn’t too tough.
But as the months wore on I guess the stuff builds in your body and while my bloods have remained good (no change to white cells, which is good in a year that a virus is running rampant) my stomach and general level of fatigue has risen per month.
What is it like? The first morning I have to take the anti-nausea tablet as well. It is a long release that has Ondansetron as main stuff to keep you from throwing up. That generally last 5 days. It has an amazing side effect of totally blocking your septic system. If you were ever loose in the back end before, this is a wonder drug you need, because you will go to the other end of scale….
There is a timing of the anti-nausea and the Temoz as well. So breakfast early, an hour later pop the anti-nausea, and an hour later the Temoz. Basically need an empty stomach for the Temoz to trash what ever lining is left on your stomach. While I am not into the big anti-nausea tablet, it is easier than having to take a daily dose on morning of each Temoz dose.
On the first day I generally gag and almost throw the capsules up. It takes a fair bit of head work to keep myself sorted. A few deep breaths, mind in gear, and away I go deliberately taking the three tablets, with a few deep breaths in between each go. Even today after hundreds of them, it was still an effort. I think it is due to head knowing what is coming. While I am on the Temoz, and with the anti-nausea taking its hold on the septic, I have to take some laxative. So Movicol satchels it is, for a few days to help with bloating and even more upset stomach. I hate the taste of the stuff.
Throughout this whole time I have learned a few things about myself. I am no good with warm fluids to take tablets, of any kind, especially Chemo tablets. You have power in your mind you never thought you had. Chemo makes you tired, really tired. It is usually in middle of day, just after lunch. Chemo brain/fog is the real deal, and it is frustrating to say the least. I have no idea if it is a surgery effect or chemo brain, but to refer to the oven as the ‘cupboard that heats stuff’, or the flyscreen as the ‘fishing line that stops bugs from coming inside’, is driving me crazy. I want it to stop. But I just have to keep my mouth closed more, and do the thinking before opening my mouth and compile a sentence. This is not easy for me.
Chemo regime keeps you up at night. I go through a number of days while I am on it that I am just plain restless all night. Oddly I have not lost weight!! I have found keeping some food in stomach helps to keep the nausea a little under control. So an hour after the Chemo, I am allowed to have food. By that time I need it. I then just graze regularly. Many people have expected me to lose weight, but I just like cake way too much.
It has been great to have Christine at home each week of Chemo. Her work, even after going back to office, has allowed her to work close to me while I am crook. That I am very thankful for.
My head doctor says that I should do stuff to place my brain away from focus on stomach during the week and a bit. But I have found. Lying down and just focusing on mental rest and internal thoughts (like I am ok, I will not be sick repeated over) helps more. I have trouble focusing on anything to be honest during this time.
Head Stuff
The last 6 weeks have been hard, and been getting a bit harder. I generally aim to be pretty happy and roll with the day. But last week talking with my psych Jess, it was clear that I haven’t been dealing well with myself. In fact the morning of my appt, I came close to clocking a guy who was a total wanker to me. I am not normally like this. But I was ready to really unleash a whole stack of whatever was inside me onto his face. I talked through a few things with Jess, it helped me to get a bit clearer. We got no real resolution, I have some thinking to do, and allow myself a bit more space, but over time I am sure I will.
Here is the thing, I am in the middle of the period I was told I had left (12-16 months). I am today stopping chemo. So while it is usually a joke, I am moving to hope and denial! I am getting an MRI soon and a PET scan. I am unsure if the oncologist at that point will say remission (can I even achieve that in my situation?), still there; responded well to treatment or what? Either way life goes on. With the support of family, and you guys I will get on with it. I do think and ponder what my definition of long term now looks like, but then, do I need to define it? I think it is a part of being a human. We all like to plan and achieve things, even the not so motivated.
Being me though I have come to realise that I have done this as part of being me. Planned stuff and worked towards the vision I have created. Yes, realised the vision. I have thought about it, and I really need to continue to work out my mind to be more present and in the Now. I certainly need to stop trying to save people from themselves. One of the things that shitted me with aforementioned tosser was I just wanted to shake the f$%k out of him and say, ‘be thankful that the biggest shit you are dealing with now, today, is a close parking spot to a cardboard drop off….’.
I can help people in other ways. Like at our local Brain Tumor Alliance Australia support group. Sharing hope with new members, supporting others through crap times. Sharing with you guys so you know both myself and the family are doing ok in a bit of a tough experience. There is still alot I can do and focus on, in lieu of trying to shake (physically) thankfulness into the world person by person!!!
As I look forward, like you all I am looking to a slightly better 2021. I sure as shit want a better Christmas than 2019. Last year amidst fires, post surgery and Radiation and in a haze of anti-seizure medication that was not right for me, I was struggling with facing each day. So I have a heap to be thankful for, and I know, like you all, that tomorrow is a new day. And with each day post Chemo I will again get my head into shape, and again be able to focus on the future. I remain positive that I can help my Medical Oncologist get better statistics than other doctors and keep pressing on for a few more years than most.
Until then, the strategy is hope, denial and lots of meditation/positive thinking and thankfulness. If all goes well I will keep writing these (now) monthly updates. I now have a real reason to reflect on a regular basis if I am being my best self. Something we all take for granted (in my opinion), and say we do, but I put it to you as your challenge for today, do and have you really?
Stay awesome, it’s ok to cry and let it out, and hug your fam,
The Tumor Trip! 