The heads up

"We are all going to die. If you are lucky enough to get the heads up that your time may be looming, you'll fight tooth and nail to hang around as long as you can". Jimmy Stynes.

What a perspective.

And on a daily basis I am fighting. Any timeline that we talk to the doctors about are simply milestones that need to be met. There is some pain and trouble along the way, but I will continue to face up to those and move on to work towards the next milestone.

The recent good results has allowed me to set some new milestones. Before that things were not looking great, and had some heavy discussions about time left. Now, we are back. Again looking to plan a part time return to work, to plan some family stuff, to look beyond next week.

Got to the movies earlier this week to see the new Avengers. Sensational family outing, loved it. Got to Nats 18th on the weekend at. Penno Pub too, awesome to see best mates. Barb and Daz. Haven't done those things for a while.

So continuing to fight tooth and nail as tomorrow is always another day.
Love.
Trev.

Reflections

Now I am about 9 months into this journey, and been entering posts on my blog for the last 3 or 4 months.

The reason I started the blog was twofold. 

• First was that I found so many things going around in my head, good thoughts and bad, and I find that by putting them down on paper, well virtual paper, allows me to define the idea from all these things bouncing around, box them up and then if needed push them aside or file them away. Allows me to move them on if I need to.
• Secondly it was to educate. I am an open book, I talk lots, too much many would say. I like sharing. I also thought that I knew stuff about cancer and treatments, but found out quickly that I didn't really know so much in the beginning, but oh how that has changed. So if I can use it as a way of sharing some info to help others be more open and knowledgeable about dealing with theirs or others cancer and other diseases, than that's great.

The other sub reason is that its a good way to update many on where I am at, what I am doing, how I am coping. But that's more of a selfish reason I reckon, and a byproduct.  I have had lots of good feedback from the blogs and really appreciate that. That's great, so thanks. 

So to reflect on the journey so far I just read through my last 40 somthing blogs. Brought back some good memories, and pumped my tyres a little to think of the way I have handled what I have known to be some of the not so good times. But also reminds me of the reality of where I am at, how quickly things can turn for the worse, how I constantly live in this limbo land, up and down, tears and laughter.

But I read somewhere last week that "...on particularly rough days when I cant possibly endure, I like to remind myself that my track record for getting through the bad days so far is 100%, and that's pretty good."

As I reckon I know better than most, tomorrow is always another day.

Love,

Trev.

Mind over Matter

My mind is writing cheques that my body cant cash.

With such a great end to last week I am feeling mentally strong, really good. Over the weekend I kept thinking I am going so great, so over did things and paid a little for it. But I just feel like I gotta keep going. The results were great, the cancer is reducing, so I want to move forward with that.

I feel that it may take some time, but reckon I can do the things that my mind wants to do. Just got to take that leap of faith and then then let my body slowly catch up. I have always thought that the power of the mind is pretty strong, I don't believe it can heal me, but I do believe it can set me up to help make the chemo work.

So the plan is this. We keep on doing the same chemo, every Monday. We will keep on this regime until it either stops working and that pesky cancer finds its way around it, or it becomes toxic. Had some side effects which suggest it is starting to become a little toxic, but managing them OK. We could be on this regime weeks, or years.  I know what I am aiming for.

It is clear that we will never be able to kill the larger tumours, but the aim is to get them down to a point where I can come off the pain meds and then we can hopefully maintain them at that level with a lighter form of chemo.

But at the moment, its business as usual. Mondays in for infusion, sleep on and off for a few days, and just work through it all each week. Do a little more each week and hopefully start getting some of my old life back.

That's the plan.

I'm still really washed out from yesterdays chemo, thanks so much to Dave T and Chris for the up and back lifts yesterday. Saw another part of the hospital on the way out with Chris, I thought I'd seen every corridor.  Thanks Chris for coming out in that crap weather to get me too.

So moving on and seeing what my mind can conjure up for me over the next few days, as tomorrow is always another day.
Love.
Trev.

Finally, some good news

So, after all this time, near 9 months from my calcs, I have been awaiting some good news. Had a couple of snippets, yep the radiation shrunk the tumour in the bowel in September, yep the bowel surgery was a success in October. Other than those its been a swag of bad news. Jane reckons we shouldn't pay when its bad news. However, for every piece of bad news I get, that must mean I am 1 step closer to good news.

I had my CT scan yesterday to determine whether the chemo is working or not. Got a call this arvo from my oncologist, Josie. Went something like this.

Trev: Hello.
Josie: Hi Trev, this is Josie.
Trev: Hi Josie, how are you (I didnt really care, just exchanging pleasantries)
Josie: I'm good thanks, but you're brilliant....

So the outcome is that the 10 odd large tumours have all reduced in size, an average of about 20% reduction, in the 8 weeks of chemo. Wow. Phew. 

Relief, joy, happiness,  contentment, exhilaration. I feel like I have been given some more time, feel a bit like that movie that JT is in, In Time I think its called, and I just got an extra bit of time credit. My onco Josie was nearly as relieved and happy as me, he is on the journey with me.

Not out of the water by any means, but looking like I am headed in the right direction. I am having some challenging neuropathy in my hands and feet which I will have to try and manage, and then there's the rash. We will continue on the same track, weekly chemo. But at the moment, after all the concern and sleepless nights, I am feeling stoked. Just stoked.

Yesterday I caught up with some old school mates. Was great to catch up with these guys again, love you all like brothers (L-R) Healz, Chop, Fincha & Mic. Hope now to have many more catchups fellas.

I Wonder

Been feeling a little worse for wear physically this week. Not sure whether the Tuesday chemo (rather than the Monday) has thrown me this week or what. Physically I have struggled a little though, maybe I overdid it a couple of days. Was good to catchup with the Huttons, Andrew and JB earlier this week and chew the fat, thanks guys. Thanks so much to JG and Mike for my chemo lifts up and back, great that you could join me on the day I got those awesome results on the markers, thanks.

Head is still full of thoughts, what will be. I have my CT scan on Thursday morning. That's always fun, drinking the lovely prep drink, which looks (and tastes) like wee. Not sure how I know what wee tastes like, Im not onto that alternate therapy just yet, but anyway, it does. Then I will ring my onco Josie on Friday to get the results. These I reckon are the 2 most important days of my life so far. The results will give an indication of to the effectiveness of the current chemo. I am hopeful, I am pumped, I am ready, I think. The cancer markers have been giving me an indication so I reckon that will be reflected in the result.

The result might be 

1. The cancer is reducing, 
2. We think the cancer is reducing but need some more tests after a few more cycles,
3. The cancer is still growing, or 
4. The cancer is still growing but at a reduced rate. 

I am greedy, I want 1, I reckon I deserve 1, so that's the aim. If 2, then lets keep going and lets see what happens. 3 or 4 are unacceptable.

I took my normal Sunday night trip down to my local pharmacy tonite to renew my pain meds script. After a previous run in with a pharmacist at Turramurra I now go to my local pharmacist, Mark at McDonalds Pharmacy at St Ives. He is great, I look forward to our Sunday evening 5 min chat. He looks after me. On the way home on the ipod in the car I was listening through the Chris Isaac collection of songs. Love Chris Isaac. One of my faves is the song I wonder, and I started listening to the words, or singing the words, well the ones that I know at least.

When I was younger, I believed that dreams came true, now I wonder.

Cause I've seen much more dark skies, than blue, now I wonder.

I keep on praying for a blue sky, I keep on searching through the rain.

I keep on thinking of the good times, will they ever come again?

Now I wonder.

And I do wonder, wonder if things will ever be the same, or somewhere at least in the vicinity. Look up the song, its a lovely song, and as usual I have never really thought of the words but as you all know I am now thinking way too much about stuff. But I do wonder, really do.

I am wondering about the results on Friday, I am hopeful, not quite confident, but hopeful. But whatever happens this week, I will go to sleep, eat, and keep on keeping on, because tomorrow is always another day.

Love.

Trev.

Finally, a little good news

Finally, had some positive news on Tuesday. One of the cancer markers that we keep an eye on which  is an indicator for the activity of the cancer is down. Early in treatment the lowest it was at was 22,000. The number itself is a little meaningless, it's the variation which seems to be more important. At the height the markers rose to 36k, then last round was at 17k, lowest yet, awesome. On Tuesday, get this, the marker was down to 4k. Totally awesome, like wow freak me out!

To put it in perspective, the markers are known to be unreliable, but the variation in the numbers is undeniably sensational news for me. Leading into next weeks scan fills me with confidence and of course anxiety. Physically I still feel pretty crappy from Tuesdays weed killer, but mentally feel very strong from the news of the markers. They are not just down, they are plummeting, really feel that I just may have bought myself some more time on this earth, and that is an unbelievably great feeling, I reckon so.

Might just break out my favourite Hawaiian shirt for today's unhook at the SAN. Keep an eye out for the fotos later.

Really looking forward to enjoying the next few days as the chemo fatigue load lightens, as tomorrow is always another day.
Trev.

Scared Shitless

Had a decent week this week. Since my small weed killer on Monday have had a decent few days. Great to have lunch with good mate JG who has been awesome with support for the whole trip so far. Had a good session at my Bowel Cancer Support Group up at the SAN this week too, love you guys, my cancer buddies. Nice to reconnect with an old school mate Brendan today.

Most of the time over the last 9 months I have been very proud of my strength of mind. I have been able to work through the bad news, the various events, and keeping very determined to work towards a good outcome. At the moment, most of the time I am still keeping that momentum, but in coming up to my next scan on 16/4 and then the results on the following Monday, I'm looking down the barrel of the most important week of my life so far and its playing a little havoc with my head. To put it bluntly I am scared shitless.

During the nights when the pain seems to reach its crescendo, and when the world is a little quieter giving my head a bit more time to bounce things around, I am starting to really struggle with some demons. Is the chemo working, is it not? Is the increasing pain the tumours growing, or is it them dying and becoming necrotic? Jane and I talk it out often. I'm sure she is tired of hearing it and I'm sure it is hard for her to have the conversation, but she doesn't say so, she just listens, and comforts and helps me keep those demons at bay. I certainly married a good one, love you forever my darling.

Waking up the next morning and then relaxing, or having a catchup or whatever, and life seems to move on. That is until the evening comes around again, and so begins the roundabout. But I know when I go to sleep finally that I can wake up tomorrow and start again, onward and upward, as tomorrow is always another day.
Trev.

JG & Trev - 1/4/2015

Respect my judgment and treatment decisions

Today is the day after my smaller chemo. Sleep patterns are weird, fatigue is weighing down the shoulders, but coping ok. Its a non answering phone day, laying on the lounge for most of it, man do I love this lounge, great job on that Mr Moore. Watched a couple of movies, closed the eyes a few times.

I've now gone through a number of treatments, and still put my faith on the medical approaches. People still point me to alternate therapies, and I confess, I still google about alternates, but none yet have floated my boat. I don't think they ever will. Logic and reason and science for me.

There have been a couple of time during treatment that we have negotiated with the medicos, where there were conflicting opinions on approach, and the process worked well. I still believe I am in charge of my treatment, that I am driving the bus. I have some pretty good people riding on the bus with me, but in the end it is my decision.

I potentially may be coming to another decision point, after the next scan based on the results we need to decide on the next course of action. I go there armed with knowledge and confidence,  as long as I'm alive we will keep making decisions, continue to move forward.

Whatever I decide to do, wherever that may lead, it is my decision to make, and I will make it with lots of research, thinking, analysis, and discussion with my family. Your decision in the same circumstances may be different, and that's fine. So my treatment decisions are a very personal thing, and so if I choose a different path than you think is right, then it's important to me that you respect that. As I am still driving the bus.

The bus continues to move forward, and tomorrow is always another day.

Trev.

My hurt is better than your hurt

Had chemo this morning. This was my little chemo, in there for around 2 hours. Thanks again Lyss for being my ambulance driver. Can I turn on the siren again? Slept thru it, and then continued sleeping at home till the evening, hence being still awake at 1 in the morning. Will spend the next couple of days working thru the in and out sleep and fatigue and hopefully get back to some semblance of feeling ok mid week.

Something I get a lot is the "I know my thing is not a pinch about what you are going through, but....". Your hurt is equally important to me as my hurt. This isn't a competition, and I certainly don't feel that what you are going through is in any way less important than what I'm going through.

I am sure some people are reluctant to tell me their problem of the day, but I assure you, what's important to you is important to me. You are good enough to listen to me and how I rant about my problems, the least I can do is the same for you. And sincerely, your hurt, your issues, if you want to share them, please do.

So no need to worry about what you do or don't say. Please do not think that I have enough on my plate, or that I wouldn't want to be burdened with your issues. On the contrary, I'd be happy to listen, as you have kindly done for me.

So, although today has been a crappy chemo day, am feeling fatigued and nauseous, aches and pains, cramping legs. I can remember back to last weeks similar Monday night, and can also remember that tomorrow will be better, and tomorrow is always another day.
Love.
Trev.

Having a Crack

I said "having a crack",  not "having crack"! You guys thought I was onto some new drug regime, didn't you. Did they legalise that?

Am I thinking too much? Am I reading into stuff too much? Maybe. I have always loved the way the Bloods culture has been described. The way players like Paul Kelly, Stuey Maxfield, and Brett Kirk lived and breathed it. Player driven values, expectations and behaviours. The way these guys go about their business, how they relate to their fans, work ethic, amongst many other things.

Just watched a stirring speech from Craig Bolton that he gave at a very recent Swans event. Here it is if you are interested (http://www.sydneyswans.com.au/video/2015-03-25/swanstv-bolton-toast-season-2015 ).

I loved some of his views on the club, what it meant to him, what he sees in the club future, and some of the guiding principles that footy has brought into his life. Some of the views are not just about footy, but about life.

He stated that their approach is really not about the scoreboard, its about having a crack. Words he used included humility, pride, togetherness. 

I really feel these words have some relationship to my life so far. Its never been about the result, never been about the scoreboard. Sure, I want my family to live comfortably, but things like money and materials have never been the primary focus for any of us. We love our cars and our house, but we have never yearned for the mansion or the Ferrari (well, maybe not a Ferrari, but a Lambo would be good). But primary focus is the involvement Jane and I have had with family and friends. My joy has come from the time I spend with family, with Jane, Cass, Lyss and E. The sport, just love sharing the sporting experience with the kids. Even Netball, we developed a love for watching the kids, and was awesome to be up again at Canoon last Saturday watching Cass run around. Its not about how long I live, or whether I am winning or losing. Time with friends and family, never about the scoreboard, about relationships, love, togetherness, pride and humility, some great words Mr Bolton.

Already posted this one on FB, so apologies for the overlap, Spent a few hours this morning at South Curl Curl SLSC with one of my all time best mates watching the sun come up, taking some great shots, then having brekky. This man was partially responsible for that Hawaiian shirt last week by the way. Onya Dags, love you brother.

Today was a good day, and tomorrow is always another day.
Trev.

Sleepy & Dopey

I used to think sleep is over-rated. I have always been a late nighter, from my early days of working shift work, night shifts. I remember playing cards on night shift and scoffing at those idiots sleeping under the desk, getting in their power naps. Who needs it?

But now, I need it, I really need it, and when I cant or don't get it, its a problem. It has so much effect on this deteriorating body of mine, and this foggy haze I continually live in, sleepy and dopey, and maybe a little bit grumpy too. There's 3 of the 7 dwarfs, I'll work on the others.

I had my big day on Monday, my all day infusion. Wore my new Hawaiian shirt, looked awesome (thanks Barb and Dags, my sartorial eloquence is unsurpassed. I even had a couple of the chemo nurses doing a hula dance, how good is that).

From my early reaction to the Erbitux they knock me out with Phenergan and a mix of a few other things. It washes me out for a few days and really messes with my sleep patterns. I sleep right through the infusion, and they wake me to go home. I get home and continue dozing, the mix of the weed killers and the phenergan weighing me down pretty well. So then over the next few days its trying to get through the phenergan and chemo haze and get back to the normal night sleeping rather than going from the sleep-wake-sleep-wake with no regular timing.

This week with the help of a sleeping pill (never taken sleeping pills before this started), and it seemed to work. Woke up this morning feeling pretty refreshed, closer to normal than I usually am on day 3. This regime in general has been tougher than the last, but hey, I'm still here, that's gotta count for something.

Some good news this week, the cancer markers that indicate the activity of the cancer were way down this week, lower than they have been since we started taking the bloods. That's good, very good. The caveat is that these markers are not always reliable, lots of things can affect them. But its an indicator right, and I just have to wait till my next scan mid April to see if the indicators come through for me.

I'm hopeful, I'm working hard for it so should get a result for this hard work I reckon.  Don't you?
Although I am still washed out, working through the fatigue and nausea, I know that tomorrow is always another day.
Trev.

Pictures

At the moment I am into taking photos. When we go out, when we meetup, love just snapping a shot off as a memory. These are serving a couple of purposes.

1. Firstly they are for me, to help me through the bad times, to flick through my fone or laptop checking out what I've been doing or been a part of over the last little while. 
2. Secondly its as a bit of a record. In the past I often have been the photo taker, but want to get in some pics whilst I am still well, and looking good. Well I know that's debatable, have I ever "looked good", but you know what I mean. I don't really care how I look, I lived with this ugly mug for 50 years now and happy in my own skin.

So humour me, I may fuss about it all, but its a reminder for me, and for you. Its me saying I think our friendship is worth recording and remembering. Whether I look good, or not so good, lets grab a snap. This is me and who I am right now, embrace the NOW with me.

Tomorrow is always another day.
Trev.