Late last year I started designing and selling t-shirts ‘promoting’ my band Los Romeos Oxidados. There were two things that drove me to do this, one being the obvious band promotion, but the other as a means to raise awareness of, as well as funds to donate into, the purchaser’s choice of either Cancer or MND research.

As I made my first donation of funds raised by early shirt sales, to the Cancer Council of NSW, I responded to an accompanying question that was asking why I was donating; I explained how the donation had come about.  A week or so later, I received an email asking whether I would mind being interviewed for a blog article on the Cancer Council of NSW’s website, and if you follow the link below, you can read the result of that call.

This is not intended to be a ‘woe is me’ or an attention seeking post, but rather, it will hopefully alert you to the need to regularly check your health, something that if I’d done, I might not be in the position I am today.

Of course, in the linked article/story, there’s a link to the t-shirt post on my band’s Facebook page and you’re more than welcome to order one if you feel cashed up and so inclined (every sale has $5 going to research and I make a small amount as well for my troubles). If you are interested, just leave a comment here and I’ll get back to you. All of the information you need is in the post I just mentioned.

https://www.cancercouncil.com.au/news/tims-story-how-music-helped-him-navigate-his-cancer-experience/

I hope you don’t object to me essentially documenting the process that I’m going through, the effects of that process, and their impact on me (it may be of interest to some, but if not, please just ignore).

For me, expressing what I’m experiencing is kind of helpful, and I hope that an understanding of what I am going through, might in some way help anyone reading this, to understand, via my experience, what others they might know, are going through (not everyone, for whatever reason, likes to share or discuss such experiences).

After a five week course of radiotherapy in 2023, in which I went through 25 sessions of radiation as well as oral chemotherapy, my first encounter with full on chemotherapy was a five and a half month stint of fortnightly cycles beginning in September 2023 and ending in February 2024. The following is also applicable to my current treatment regime, with only the toxic waste they pump into me being different (bottle is still the Irinotecan

The cycle begins on a Monday and involves a 3 hour infusion of the chemo drug (Oxaliplatin in 23/24 now replaced with Irinotecan) at the hospital, after which I have an infusion pump bottle attached to me for the next two days (I have a permanent port in my chest through which they feed their toxic waste), which is full of a chemo ‘drug’ called Fluorouracil. Oxaliplatin is the devil’s own brew… it is nasty!  Irinotecan is far more gentle, but still hard going with some different side effects (described below).

On the third day (Wednesday) I return to the hospital, where they detach said bottle; a quick and painless procedure.

On the Friday of the following week I attend the hospital for a blood test so they can keep track of the cancer’s veracity via what they call the CEA marker.

On the following Monday I meet with my oncologist after which the whole cycle begins again later that morning.

I am now in the middle of my second fortnightly cycle (I restarted chemotherapy in the last week of January) and have just started to get hit with the side effects… gastric issues which are controllable with medications, and, as of today, major hair loss. In my 2023/24 chemo, I managed to keep my hair, but it’s looking pretty certain that this time around, I’m going to be as bald as the proverbial badger; at least I’ll be able to finally put those MND beanies to good use!

Anyway, that’s pretty much all I have to say today… if you’ve read this far, thank you! I hope you might have gained some insight into what is involved and what literally thousands of people are going through every day… as I mentioned in the original post, this is NOT about me seeking attention, or worse, sympathy, it is about building awareness and hopefully encouraging others to occasionally get check ups (colonoscopy, bowel cancer screening test you get in the post, chest x-ray, mammogram etc etc). I’m paying the price for my ambivalence… don’t you be like Tim (me 🤣).

I might as well plug my band t-shirts again, as this is a way you can add to your wardrobe while donating to Cancer or MND research. Just follow, this link:

https://www.facebook.com/share/p/1A17nCiLTy/?mibextid=wwXIfr

And just for [censored] and giggles, here’s a clip of my UK based friend’s son’s composition in which he is sporting one of my shirts:

 

 

Thanks for sharing Tim - sending you every strength for the road ahead. 

1 hour ago, Grapeviney said:

Thanks for sharing Tim - sending you every strength for the road ahead. 

Thanks mate. I appreciate the thought… I do tend to get a bit verbose at times, but in this case I think it’s not such a bad thing. Take care.

8 minutes ago, hardtack said:

Thanks mate. I appreciate the thought… I do tend to get a bit verbose at times, but in this case I think it’s not such a bad thing. Take care.

Good luck buddy I wish you well ,keep fighting the effing devil

1 minute ago, forever demons said:

Good luck buddy I wish you well ,keep fighting the effing devil

Thank you! That’s the plan 😊

Best wishes to you mate

On 18/02/2025 at 22:40, hardtack said:

I hope you don’t object to me essentially documenting the process that I’m going through, the effects of that process, and their impact on me (it may be of interest to some, but if not, please just ignore).

For me, expressing what I’m experiencing is kind of helpful, and I hope that an understanding of what I am going through, might in some way help anyone reading this, to understand, via my experience, what others they might know, are going through (not everyone, for whatever reason, likes to share or discuss such experiences).

After a five week course of radiotherapy in 2023, in which I went through 25 sessions of radiation as well as oral chemotherapy, my first encounter with full on chemotherapy was a five and a half month stint of fortnightly cycles beginning in September 2023 and ending in February 2024. The following is also applicable to my current treatment regime, with only the toxic waste they pump into me being different (bottle is still the Irinotecan

The cycle begins on a Monday and involves a 3 hour infusion of the chemo drug (Oxaliplatin in 23/24 now replaced with Irinotecan) at the hospital, after which I have an infusion pump bottle attached to me for the next two days (I have a permanent port in my chest through which they feed their toxic waste), which is full of a chemo ‘drug’ called Fluorouracil. Oxaliplatin is the devil’s own brew… it is nasty!  Irinotecan is far more gentle, but still hard going with some different side effects (described below).

On the third day (Wednesday) I return to the hospital, where they detach said bottle; a quick and painless procedure.

On the Friday of the following week I attend the hospital for a blood test so they can keep track of the cancer’s veracity via what they call the CEA marker.

On the following Monday I meet with my oncologist after which the whole cycle begins again later that morning.

I am now in the middle of my second fortnightly cycle (I restarted chemotherapy in the last week of January) and have just started to get hit with the side effects… gastric issues which are controllable with medications, and, as of today, major hair loss. In my 2023/24 chemo, I managed to keep my hair, but it’s looking pretty certain that this time around, I’m going to be as bald as the proverbial badger; at least I’ll be able to finally put those MND beanies to good use!

Anyway, that’s pretty much all I have to say today… if you’ve read this far, thank you! I hope you might have gained some insight into what is involved and what literally thousands of people are going through every day… as I mentioned in the original post, this is NOT about me seeking attention, or worse, sympathy, it is about building awareness and hopefully encouraging others to occasionally get check ups (colonoscopy, bowel cancer screening test you get in the post, chest x-ray, mammogram etc etc). I’m paying the price for my ambivalence… don’t you be like Tim (me 🤣).

I might as well plug my band t-shirts again, as this is a way you can add to your wardrobe while donating to Cancer or MND research. Just follow, this link:

https://www.facebook.com/share/p/1A17nCiLTy/?mibextid=wwXIfr

And just for [censored] and giggles, here’s a clip of my UK based friend’s son’s composition in which he is sporting one of my shirts:

 

 

Just read thru your report again with tears flowing good luck mate

Keep up the good fight, @hardtack

Our thoughts and prayers are with you always 🙏 ❤️ 

3 hours ago, forever demons said:

Just read thru your report again with tears flowing good luck mate

Thanks so much mate! I’m actually all good with it, and happy to go with the flow and see how it all turns out. I got the old head shave today (will post pics)… I keep wondering who is the stranger in the mirror 🤣

3 hours ago, Macca said:

Keep up the good fight, @hardtack

Our thoughts and prayers are with you always 🙏 ❤️ 

Thanks Macca… I’m all good, although the new chemo regime they have me on, has attacked my hair, so after a visit to my hairdresser guy this morning, I’m as bald as a badger.

First points in my battle against the big C, go to the toxic waste they are pumping into me, otherwise known as Irinotecan….

8 hours ago, Damo said:

Best wishes to you mate

Thanks so much Damo…genuinely appreciated!

Reckon you look younger without the mop of hair @hardtack

4 minutes ago, Demon Disciple said:

Reckon you look younger without the mop of hair @hardtack

Yeah, a few people have told me that… maybe I should have done it when I was of a more desirable age 🤣

Edited February 20Feb 20 by hardtack

9 minutes ago, hardtack said:

First points in my battle against the big C, go to the toxic waste they are pumping into me, otherwise known as Irinotecan….

 

Yep, you look better bald, hardtack!

And younger too! Late 50's, early 60's look!

 

Just now, Macca said:

Yep, you look better bald, hardtack!

And younger too! Late 50's, early 60's look!

 

Decade or age? 🤣

1 minute ago, hardtack said:

Decade or age? 🤣

Ha ha!  Age! 

Trim the goatie and add a splash of streaky light colour and you'll be the veritable devil (Demon)

2 minutes ago, Macca said:

you'll be the veritable devil (Demon)

Just call me Lou Cypher.

1 minute ago, hardtack said:

Just call me Lou Cypher.

Well there's a film that has escaped me!

Angel Heart (for the benefit of others) Looks a goodin' too with Rourke & De Niro

50 minutes ago, Macca said:

Well there's a film that has escaped me!

Angel Heart (for the benefit of others) Looks a goodin' too with Rourke & De Niro

It’s a brilliant film! Bill Cosby was absolutely outraged by Lisa Bonet appearing naked in a very graphic scene; she was, I think, still appearing in the Cosby Show at the time.

Started third cycle of chemo today. So far not feeling and side effects and feeling pretty good. Unfortunately my peripheral neuropathy and resultant balance issues, is here to stay (upside is that I get to look sophisticated with a lovely ornate walking cane). These are how I spend some of my time in the chair…

A further update. My band will be playing a gig for a friend’s birthday in April (still open to the general public, so it should be crowded). Despite it being at the end of the week in which I have my chemo infusion, and is when I’m at my lowest ebb, I’ll be attempting to sing a handful of songs… but I’m in the process of inviting a few other vocalists and musicians to help out.

So far it’s looking like Mick Daley, Andy Baylor, Jonny Gretsch, Marcus Phelan, with possibles being Terry Serio, Vogli Bonze (from the Japanese band Buddhadatta) and Lizzie Mack (from the Soul Movers)… other musicians who will almost definitely join in are Richard Burgman (Saints and Sunnyboys), Murray Cook (Wiggles and The Soul Movers), Marcus Holden on fiddle, Peter Head (from The Headband) and Bob Spencer (The Skyhooks and The Angels). A few aren’t yet locked in, but I’m hopeful most will make it, plus a few more. The older folk among us might recognise a few of those names.

If you’re a Sydney based supporter or are likely to be in Sydney on Saturday 12th April, please try to come along and introduce yourself (how do I get more Demonlanders to see this post?).

Edited March 9Mar 9 by hardtack

My takeaway chemo infusion pump bottle, awarded to me on completion of my fortnightly 3-4 hour infusion at the hospital.

Let this be a warning to make sure you get the occasional colonoscopy, act on the bowel cancer screening test sent to you in the mail, and not to let life get in the way of these things. I was guilty on all counts.. don’t you be like Tim.

Edited March 10Mar 10 by hardtack

 And so Cycle #5 begins. As the effects of the new chemo poison, Irinotecan, replacing the devils brew they were pumping into me over the five and a half months in 2023/24, while being less debilitating are still having a cumulative effect that, despite my having more energy and am now able to walk to the local shops (something I could only dream of doing while on the Oxaliplatin), it does leave me feeling wobbly and off balance right up until the end of the cycle.

My appetite is still with me, but everything tastes like [censored] thanks to the affect it has on my taste buds. My weight is therefore a lot more stable, having only dropped a bit over half a kilo down from a tad over 92kg (I’m 188cm) to 91.4kg. Over the five and a half months of being poisoned by Oxaliplatin, I lost something in the order of 14kg down to 78kg (not necessarily a bad thing).

I am enjoying spending my time in the infusion chair, generating images from my imagination into AI, using an engine known as MidJourney. A substitute for my now reduced ability to draw with my hands, or to get out photographing, although I have arranged to meet and photograph the Japanese band Guitar Wolf this coming Saturday and another Japanese band that I’m happy to call my friends, Buddhadatta, in April (they’re currently touring Australia).

Some examples:

Edited March 24Mar 24 by hardtack