Trevor passed away in his sleep this morning at approx 4.20.

Thank you all for the support over his whole journey. All your messages were read to him. We all appreciate it.

Further details to come.

Thanks again,
Cassie, Alyssa, Jane & Ethan

Final Siren

Hey all, Cassie here again.

Dad's condition continues to deteriorate and we seem to be drawing closer to the end.

From now on, we'd like it to just be the five of us, so please don't visit at this point. If you'd like to send well wishes to any of us via us or through Trev's phone (which I'm currently in possession of) then please do, but just now we'd like it to be the five of us only.

Thanks for all the support over this time for ourselves and for Trev. We all know how special he is and how much he's impacted those around him.

Please know we will continue to keep you updated through the blog and through facebook.

Thanks again,
Cassie, Jane, Alyssa and Ethan

Last Quarter

Another day, another change of blogger. This morning brings the news that the infection is no longer treatable and Dad's body is shutting down.

This has been a long time coming but it's still very difficult. At the moment he is just sleeping, he hasn't been able to eat or drink because he's too drowsy.

If you're inclined to pop in and say goodbye to Trev, it needs to be in the next couple of days. He's at Neringah pallative care facility just next to Wahroonga station. Keep in mind that he's very out of it and may not be able to answer you, but studies have shown that even in this state he may still know you are there.

Thanks for all the messages of support, he's getting the best care possible. It's a wonderful thing that we're able to reach out to the many people he's touched through the blog and through other means.

Thanks again,
Cassie.

Jane's mobile: 0400 713 707

Latest update

Hi Everyone. Change of blogger this week. Jane filling in.Trev is currently in  Neringah  Palliative care  facility doing it very tough. His liver is failing and he has developed  cellulitis in his legs. He's  pretty out of it so visits are restricted to immediate  family only.  We'll  let you  know  when  he feels up to more. Thanks for all your  support during this difficult  time.  Love  Jane, Cassie, Alyssa and Ethan

The RESET

I've had a few emails and texts over the last week asking about my welfare, "Are you OK?" , stemming from a group asking each other have you heard from Trev?  Its great to know when I don't blog, or post, or go to ground a bit that people are concerned and wondering how I am, thanks.

Just to let you know, I am OK.

The RESET

Last week the family spent a week on Hamilton Island courtesy of Dreams2LIve4. It was an awesome week. Was a mix between relaxing and activities, we all had a heap of fun and was great to be there as a family unit.

Snorkeling on the Great Barrier Reef

Such a big thanks to go to Dreams to Live for, please click on the link above to get more info on who they are, what a wonderful organisation and thanks to Louise for making it happen. I plan to write some more stuff up on these guys with more photos when I download them.

Since then....

So since then I have tried hard to settle back into reality. For whatever reason, I am constantly tired and fatigued and have been sleeping so much more than normal. Sleep however is not normal sleep, it comes and goes, sometimes deep sleep, sometimes not. It just means that I tend not to have enough time to do lots of stuff, as I spend a lot of time just resting. Hence why you haven't heard a lot from me.

Apologies to those I have plans to catch up with, there is a few of you that I have missed out on at late notice, but just couldn't get to it, very sorry. Thanks for Dave Tilley for the chemo pickup on short notice too.

Thanks for all your concerns and hope to resume normal transmission real soon.

The Green Dream

In my recent stint to Emergency Department I had another chance to have a closeup encounter with "The Green Button".

What is the Green Button? Well the green button is called a PCA or patient controlled analgesia.  Its about the infusion of pain relief.  To simplify, the basic idea is that when we need to have pain relief it can be put into us at regular or irregular intervals, however the PCA is all about the patient experience and giving control to the patient as to how much pain relief they get, and when they get it.

So my first experience on the PCA was with Morphine after my surgery in October . I was really all for them getting as much morphine in me as they could at that stage, just give it to me baby, uh huh, uh huh... However they negotiated with me the PCA, so what that meant is that I would sit there with the beep machine, and when the dose became available so I wasn't OD-ing then the light would come on with the green button I was holding, and I would push the button and so get a regulated drip of morphine. Sounds good? I am in complete control, well, some not complete, but some control of the dosage and when. So if I didn't need it, then I wouldn't have it. I like that aspect, as I would prefer not to have if I don't have to, does that make sense?

So the pros and the cons....

I like the idea that you only take what you want, so if you don't need it, you don't get administered it. That's good right? I never like taking too much, whether its fear of addiction, or the worry of longer term effects. You cant take too much in a PCA environment, its controlled.

But what I did find in that initial situation is that I was watching the button. The button turns green when you are "allowed" another shot. Jane said I would stare at the button and as soon as it lit up, so did my eyes and my trigger finger.

The pain is my kryptonite. Once I get to that pain threshold I find it hard to get back from, I spend time settling down, trying to deal with it all, and mostly not dealing with it real well.

In this last visit to ED, I knew I needed sleep, liquids, and buy some time till Josie my Onco came in the following morning so we could sort it all thru. However they urged me, well insisted really, that we go on the PCA, "you will be glad you did, it will make a heap of difference". Well with the pain what it was I just ran with it, not really thinking. It was set at I think 10 or 15 mins, so the green button would light up in 10-15 min intervals, I would watch, wait, click, try and close my eyes, watch, wait, click,... .

So how much sleep do you reckon I got that night, waiting for the pain, clicking the button, and so on.
Get the picture?

The green button is good, in many ways, but gotta think this thru. The situation I was in did not suit, in this case better off would have been a regular dose and then maybe checks every couple of hours perhaps. I think some docs and/or nurses are probably more wedded to the green button than others, I dont know their protocols for pushing patients onto one, but will certainly be asking the question next time its up on offer.

Pros and cons on both sides I am sure, but just got to calmly and clearly weigh those up and make good decisions.

Now into 2016

So after a challenging beginning to the 2016 year I have started chemo full on yesterday with full on FOLFIRI with Cetuximab. Couple of glitches over the day yesterday, feeling the wash of yesterdays chemo, but dealing with it ok. Each day will be better, as tomorrow is always another day.

Love.
Trev.

Joke time

So after my 2 weeks in Hospital, I have 2 pieces of humour for you, first is a joke sent by my mate Merren, pretty good one to lift the spirits, the second is an actual thing that occurred on the ward that I was subsequently very apologetic for, but was pretty funny.

Joke 1...

A male patient had a full face oxygen mask, the trainee nurse had just given him a sponge bath of sorts, and he mumbled thru the mask "Nurse, are my testicles black?".
Embarrassed, the young nurse replies, "I dont know sir, I'm only here to wash your upper body and feet.".
Struggling to ask again... "Nurse, please check for me, are my testicles black?",
Concerned that it may elevate his blood pressure or heart rate, she overcomes her embarrassment and pulls back the covers, moves a few things around and cradles others gently, "Sir, there is nothing wrong with them, they look fine."
The man slowly pulls off the oxygen mask, smiles at her and says vrey slowly... "Thank you very much, that was wonderful. Now listen very closely. Are-my-test-results-back?"

Joke 2, well this one really happened...

After having much trouble sleeping in hospital over the last couple of weeks, we hatched the plan of a relaxant, Atovan a around 8pm, then a couple of Panadol to also help with the fevers at around 9pm, and then a sleep pill, Temazapan, at around 11pm before nodding off to try and get some sleep.

My nurse was Homer, a lovely and capable guy that I have also has as my nurse at the infusion centre. Homer is very quiet, and just goes about his business really well,one of the nurses I feel in very good hands with, and have a good affinity with.

So all going to plan, however the doc had prescribed up to 2 sleep pills at a time, so instead of 1 we decided to go 2. So I went to sleep, worked a treat. First I remember is around 3am-ish waking up on the other side of the bed with my full port assembly disconnected, alarm from the beep machine going off, and Homer rushing in and asking me, "Trev, what have you done?". What i had done, was very skillfully after watching the port connections many times, I had clipped and disconnected the lines, Homer was concerned for the leaks, but nope, I had done it well, no leaks and all good.

So I think what had happened is that as a result of the drugs that worked so well I was so zonked that I went into some autopilot to disconnect. Not sure what was coming next, whether I was just going to shower without my pole, or I think more likely I had, had enough and was about to exit and head home, but for Homers quick action, I might have made it, damn!

Over the subsequent couple of days I continued to be apologetic to Homer, and he was completely fine. All the other nurses knew about it, some were a little critical  but most had a little giggle with us as well. Something I am sure we will laugh about for some time. They will be careful to keep an eye on me during the witching hours just that little more I am sure.

Next week....
So next week I will hopefully get back to some routine and back into a chemo round whilst getting used to the new pain regime. Today was OK, and tomorrow is always another day.

Love.
Trev.

Hospitals, I love them, I really do

You people that consistently or intermittently spend stints of 1, 2, 3, 4,5, 6 + weeks in hospital, how do you friggin do it?

What a difficult 2 weeks this has been.

It really started a couple of weeks back on NYE when I came in with some undetermined pain. This turned out mainly muscular in the ribs, so stayed in a few days in the ward and then out again, still with some discomfort, but managing.

Infusion machine.

But where weren't aware of when which we found our when we came back to ED a couple of weeks later on Sunday Jan 16th, this time was that the tumour had had significant growth since Chrissy, seems like it has just let go. We we're hoping that the current level of stability that I had got to would hold though my January chemo break, but looks like it went the other way, the floodgates were pretty ready to open and so they did.

So have now spent 13 days in hospital and have well and truly had a gutful. My normal strength of mind has deserted me and had been replaces with tears, feelings of distress and anxiety, meltdowns. I have mentioned this in various ways and various tones to my many doctors and nurses with varying levels of success.

But Its time to go home. I cant sleep, so its a vicious cycle, my mum used to tell me sleep and fluids to get better, and I am only getting one of them. I need my family around me, not just visiting me, but around me, conversing, discussion, making life feel at least a little normal. Whatever is going to happen there needs to be more quality of lif that this, even if that's just annoying Jane and the kids, that's got to be more fun doesn't it?

So whether I go home or not seems to be up to a fill in onco as its Saturday today and my main onco aint here. Each doc I see is current pushing some responsibly to the others. I don't know what this guys is like, old, young, cranky, inflexible, but already I don like him just its because its his responsibility. He could be a great bloke, or lady, although I think Josie said he was a bloke. Even I I could go home for a few days and come back in later in the week, it would at least give me some time to recup physically and mentally.

Laying in my angled hospital bed, man you need any auto engineering degree to get these beds as the right angles, and if you lost that right angle, someone presses the wrong button (how dare they make the bed). Waiting for their not good bloke fill in onco that I have never met, waiting to throw the toys out of the court as I know I am up for an argument. Lets see how this plays out, hoping for a night in my real bed and on my lounge for sure, but yep, well see.

So hospitals I really do love you. the SAN you have been exceptionable good to me, but just for now I need to have a break, I think we have been moving too quickly. Its me, not you. Not, its sort of a bit you as well, sorry bout that.

I love being there most of the time, I love my time with the nurses in infusion'. I love the way they look after me in ED and the wards, most of the time. Just not today ok? Lets try again tomorrow  as tomorrow is always another day.

Love.
Trev.

BYW, yes, not many toys had to be thrown and I am sitting here at home on my favourite couch, ready for a good night sleep. love it.

Shrinking Violet

When I was young I didn't have much of a green thumb, though i did take some interest in plant life. The African Violet was certainly a favourite, I am not sure why. The colour, the touch. Along with the Venus Fly Trap that we used to get off Dave Healey rated up there as well.

Thanks to my family for the African Violet in the recent hit.

So the latest update has been a challenging one, aren't they all I guess.

Had a good day at the BBL and WBBL last Saturday with Cass, was a good day, my old bones got a little tired, but really enjoyed the day. Thanks Jamie for giving us the car parks to make it easier, and a few friendly members stand attendants for letting us sneak through to give us a quicker exit, made a difference eh Cass, well done, loved spending the day with you as always.

Then on Sunday things went a little pear shape and hasn't really improved since. I have less of an appetite and a nagging pain for w eek prior, nothing bad, nothing really unexpected, just something to manage. On Sunday it got to that point that the pain continued escalating, some inside and some near the outside, couldn't really put my finger on the basis of the pain. My DIY doctoring off the boil today.So got Lyssa to take me off to ED, the idea I would get them to pump me full of morphine for the night then would see my oncologist the next morning. Not that it never does, but that didn't quite go to plan. Anyhow, plenty of morphine and fentanyl, and then on the scan-train.

So been here a full week now, and we found out earlier in the week that although there was some stability in the growth, as of last scan in 2015, that clearly the chemo was JUST holding them, as soon I took the break from chemo they just let loose again. That has been a large source of the pain, sometimes the pain escalating to the 9/10 range,the scratching at the walls and screaming type. I also developed a range of killer hiccups, who wants friggin hiccups when you have pain in the abdo and ribs and all sorts of other places.

So this week has been interesting. Seen onco Josie and Palliative care doc Gillian daily to try and get on top of the pain. We are now working on getting control of the pain and getting over the infections. Both have there challenges, but at least we now have some plans.

Starting to feel normal, well, not not normal, but somewhere in the vicinity of it, so after a full week in hospital we will hopefully be heading home sometime mid this week.

So back to rest and recup,and tomorrow is always another day.
Love,
Trev.

Happy New Year

What a year 2015 has been. I'm pretty sure that Ive never had a year with so many ups and downs. The highs have been really high, and the lows been really low.

Some of the negatives I sometimes wish I could forget, however the challenges over the time help to provide that reason to keep going, I look back on the strength I can draw, the way I have always bounced back and look at the resilience it has drilled into me, the bad days are part of me and help make me what I am.

In every situation I try hard to draw the positives, find that silver lining. There is always a silver lining. Of the whole journey what I am so pleased with is the way I have reconnected with old friends, and got closer to current ones. Whether its because I have the time to do so, or the inclination to do it due to the situation, I have met up with so many people this year for simple coffees and lunches and dinners, and its been just wonderful. Just keeping in touch with so many people, and getting so many texts, letters, emails and phone calls of support and love is astounding.

Daily I get messages from people with words of support or love. Who gets that? Really, who gets that. It brings a smile to my face and a tear to my eye every day when I receive that simple text or email. "Might have been a while since we spoke, but just wanted you to know...".

I am a very lucky guy.

So a huge thank you to all of you that are there for me, that are supporting me. It means the world to me to get that, keeps me going for sure. Thanks.

Update:
So its been a challenging couple of weeks. Most of you already know but spent a few days in hospital after deciding to watch the NYE fireworks from the Emergency Department of the SAN Hospital. Their small Samsung TVs grainy screens were awesome to watch it on, just hard to buzz a nurse for some more ice at 1 minute past midnight on NYE, where the hell were they?

So we think the pain I had was from some rib and/or rib-cartilage issue, with the liver and the colon inflammation putting pressure on the ribs and causing what was immense pain. We thought it may have been a stoma blockage or my liver packing it in, but I guess this is a relatively good result. The bad part of it is that it will take a while to heal, in the mean time its a bit like having a cracked rib, so as long as I dont laugh, breath, cough, or move in any direction, then all is good. Tweaking the pain meds now to try and get on top of it without totally spacing myself out with them.

I am grateful to my onco Josie who came in to see me in Hospital both on New Years Day morning and also the Saturday morning, and spending time with me to help sort this out. Yeh I know its their job, but he treats me like I am his best patient every time I see him, he spends the time and really cares.

Thanks to my old, old mate Rod Young (old as in years known, not as in age) for my new Hawaiian Shirts dropped around yesterday. Saffy and I particularly like the green with the paisley touch, awesome. Rod and I hadn't seen each other since primary school up until we got together earlier this year.

Love the shirt, don't you?

So will be looking to get on top of the pain management this week, maybe getting out a little bit without over doing it, spending time with the kids. Tomorrow is always another day.
Love.
Trev.

The Best Christmas Present

So a few days down after my results, if you  haven't caught up with that then heres the link
http://trevjourney1.blogspot.com.au/2015/12/latest-scan-result.html

I've got some great chrissy presents over the years, but I cant remember one that I have felt like this about. Is it relief, joy and happiness, I am really unsure.

It is certainly a relief. I was sure that the cancer was growing, that the weed killer wasn't working. What a relief to hear that I was wrong. Don't mind being wrong in this case for sure. Anyway, I am used to being wrong, I don't need to be right with a family full of people smarter than me, and that includes the dog (yes the dog is a person).

But I think the overwhelming emotion is happiness with a generous amount of optimism for the future. Even though the last week I have been having a post midday blues, not feeling so well, I am treasuring spending moments just sitting chatting with all the family, thinking about future. I feel so optimistic about 2016, what we will be able to do, memories we can make. It feels so, so different to a week ago. Am I explaining this OK?

For the first time for quite some time I am feeling for the future. Even talking about booking an event that we all want to go to next August. NEXT AUGUST, can you believe that? A week ago I was not willing to book something up for next March as I had no idea how my health would be. The news has given me a different perspective, one that even though I still don't know how my health will be at any time, I am optimistic that I look to the future, lets aim for it and see where it lands. I'm sure I wont always hit the bulls-eye, but I'll keep practicing and keep working.

So making plans for Chrissy, thinking about the rest of December and January and its going to be great, every bit of it.

Loving today, and loving that tomorrow is always, always, another day.
Love.
Trev.

Just an old family foto, always good times.

Latest Scan Result

So this is about my latest progress scan, let me set the scene.

Scanxiety again

Got the scan done last Wednesday, so I could have called up for the results on Thursday or Friday, but I always like to wait until I see my onco on the Monday. Not sure the reasoning, but it seems safer, and more practical. Whether good or bad results, it is more real and considered, and we can sit and work out the way forward calmly and logically. It seems to make sense to me.

The flipside to this is Scanxiety kicking in. Its interesting isn't it, i keep telling myself that I'm handling it fine, but I find I am a little anxious, that I work through different scenarios, whats going to happen, what the results may be. Sleep leaves me, I tend to have more interrupted sleep, wake up early and not be able to get back. But it still seems logical, somehow.

The Context

So the context of the scan. After last scan where the tumours had appeared to have leveled out, we tweaked the chemo drugs slightly to see what would happen. Since then, I have had increased pain, so my DIY medical expertise was sure that meant that the bastards were growing again, that the week killer wasn't working.

My thinking was mainly based around how much they had grown, what would be the next steps. I have been planning for months to have a full month off chemo, I dearly want to let my body recover some, and also spend some side-effect free time with the family. But if the growth was significant, then the advice from Josie the Onco would be to keep on the chemo, or try the next option of chemo which I know has significant side effects. I dont want to make that decision, because we are starting to really talk life and death decisions now. timing comes into play.

If this doesn't work, which I am sure its not, and if the next ones don't work, then my calculation takes me to a bit past mid 2016 as my use by date. Hows that for thinking, does that give you a bit of scanxiety, it sure does me.

The Result

So, lets put us all out of our misery. After the normal pre-appointment chit chat, Josie stated he was very happy with my results. What does that mean I asked, he said its STABLE. What? STABLE? So I made him read out the last and current measurements of the 9 odd tumours they were marking. Some were same, some were slightly, very slightly larger, and 1 was even measured as a little smaller. We were expecting the cancer had grown, that it was starting to take over, but no, its stable. Thats a great word for now, an awesome word.

I don't believe it, Jane was with me, and we both didn't believe it. Well we did believe it, but it was so unexpected. So a few hours later, massive hugs from lots of people  including my onco, hugs of joy, Jane, nurses. And i add lots of tears, very happy tears. One of the nurses even questioned my red rash on my face, but I told her that was more likely from the intermittent shedding of tears, which led to a new conversation on why and then some more hugs from nurses. Even the pharmacist Lee shed a few tears with me. These nurses and docs ride the roller coaster with us, they feel it and take it on, such empathy.

Managing the Bastards

I am stoked. So relieved, happy, unexpectedly so. What a result. So up till yesterday I was resigned to this likely being my last chrissy with the family. I reckon this result could have bought me at least 1 more, and maybe more with all the possibilities of opening up more trials and other treatments. We are on the way to managing the cancer. For how long I don't know, but I am going to have 2 full fortnightly cycles off chemo, so finish next Monday, and then start again on January 25, 2016. Its an unbelievable feeling today, I feel washed from the chemo, but in another way I feel I can run through brick walls. Awesome.

News

So this week has been a little quiet. Just been taking it easy and getting some recovery time in. Scan, Support Group Chrissy Doo on Thursday was good to catch up with my buddies there, bit of club footy work catching up with Rowey and Thommo, and taking E to footy trials where he had a great week to finish off the trials. 

However some not so great news today for us, E got word that he didn't make the final cut for the Swans next year. However he is on the cusp, and the head of the Academy was very positive with his feedback, gave him some specific things to do over the season with the intent that if he does well then he will again be invited to the trials at the end of 2016. Swans Academy has been a big part of our lives for 5 years and has been great in Ethan's development and maturing. I am extremely proud of my boy for the way he has conducted himself all the way throughout  the work and effort and the results he has achieved. So proud of you E, and love you so much.

As always, life goes on around us, my results and E's news are just a couple of the things that happened in a world of things that happened today. And for us, life will also go on and tomorrow is always another day, full of hope, and laughs and lots of possibilities. Bring it on I say, we will take it head on and make it a great day.

Love,

Trev.

Todays Infusion