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.

Company, or lone time

Had my short weed killer blast on Monday, went without too many hitches. Knocked out again so been a sleepy couple of days. Starting to feel a little normal. The rash from the Erbitux has got worse, so pumped up the creams and antibiotics to combat that, got some new stuff on Monday to try. I'm starting to look a bit spotty.

Company or Lone Time.

My children laugh about how I can never be alone. I go to the shops for a loaf of bread, and make one  of them come with me. I just like their company. Like talking and laughing with them, and it's good for some captured time in the car. So I'll keep them thinking what they want, if it allows me to laugh and chat.

I am a big one for sharing, so I do like company. All my footy mates probably cringe at our chats, as I talk lots, share lots. But that's me, it helps in this situation for me to talk and share and it helps to think and work things thru just by getting it out aloud. Problem shared, well you know that one.

On the other side, I also value alone time. Time to sit and rest and veg out, or time to think and reflect and ponder. Talking with Jane and Cass the other day and we got onto introverts and extroverts, what they like, what they need, interesting convo.

Both company and lone time are very important to me, and good friends understand. Good friends understand when I don't want to answer the phone, or return calls, or if I cannot have that coffee. They listen to what I say, don't push when they see me flounder or hesitate. They don't just drop in but send a text to see if ok. But they continue to follow up and reach out, and understand. They really understand, and you all know who you are.

Everyone's different. I dearly enjoy spending time with good friends and family, over a coffee or a beer (much less beer these days). Thanks so much for understanding, all my good mates, my good friends, my family, all of you are my loved ones.

Tomorrow is always another day.

Trev.

Things are different, but things are ok.

Had my big chemo day earlier this week, thanks to Lyss and Chels for the lifts up and back. Again they pumped in the Hydra-cortisone and the Phenergan which knocked me out for the day and pumped in the weed killer. No reactions, but really washes me out for a few days. After a couple more weeks we are going to try with lighter doses of the knockouts, hopefully my system gets used to the weed killer and I can tolerate it more, that's the plan. Doms picking me up soon to go up to the SAN and get my fortnightly bottle unhook. Cant wait, hate this thing around my neck, even if it is for 2 days a fortnight.

Feeling pretty good, going to try and get to the Swans NAB cup game on Sunday, its a bit of a test to see if I can get there and last the game. Pretty confident, we'll see.

Just watched a new movie on HBO, 'The Crash Reel". Its a documentary about a snowboarder, Kevin Pearce, that suffered a traumatic brain injury and his ongoing recovery. He so wanted to get back to snowboarding, and it took some time for him to accept that he wasn't going to be what he used to be. Good movie, check it out if you get the opportunity, really well done.

Once he got towards that acceptance, I like how he put his perspective to his brother...

"Its about understanding that things are different, but things are good, and things are OK...".

I like that for me. Things are good, and things are ok, just a little different, I get that. The new normal.

Tomorrow is always another day/
Trev.

Sometimes I’d rather hear about your day than share news about mine.

Now you know I don't like talking, I am a shy, retiring introvert, right?

Well, maybe not, might be stretching it a little. Part of my therapy that I have engaged with is talking about my disease, treatment, what it does to me both physically and emotionally. I find it does help to share it all. I know you all sometimes get bored, and I know I talk too much, but I do thank you and appreciate you listening.

I do find that I still think about this thing 24x7, I really can't get away from it. So it's sometimes nice to hear and talk about something else. I'd sometimes rather hear about your day, your ups and downs. They are certainly just as important to me.

This weekend has been great. After my shorter infusion last Monday by Thursday I was feeling pretty good, nearly normal. We even went out to dinner on Saturday night, haven't done that for a while, was great to get back out and do some normal stuff. Back into the big infusion this week, should be fun.

Tomorrow is always another day.
Trev.

Do you remember Martin Crowe?

Had another dose of Erbitux yesterday, after a bit of discussion the gist of it all was that they knocked me out for the day and then threw in the weedkiller. So slept thru it all without the dramas, and also pretty washed out today.

I saw last week the NZ Cricketer, Martin Crowe getting an ICC lifetime achievement award. Didn't think much of it, but he looked ill and thought I heard the commentators say something about his health, so I googled to find a little more.

He was diagnosed with a lymphoma a couple of years back which since turned into a rare blood disorder. He wasn't expected to live till the end of last year, and is still hanging in there. He went thru some brutal chemo initially, but for this latest bout he decided to not do chemo, try some natural therapies and stay at home and rest.

"Its just a journey based on what I believe within myself".

He has taken it into his own hands on how he wants to handle it, made decisions based on what he thinks is best for him. I am sure he would have got some hassle over denying the chemo and moving to alternate therapies, but he is taking control, I like that.

"Removing the prognosis from my head has been the hardest, but we are getting there".

Its another story of the power of ones own self belief, being in control and believing that it is the right thing whilst staying pragmatic about the situation, I get that too.

"You call on everything that you have got. The main thing is love for the people around me and what is given back. I only really focus on compassion and forgiveness because that is the only way you can keep moving forward".

I think this is really accepting and enlightened thinking from Crowe. I am not sure I am quite there yet but what he expresses is pretty much where I want to head. Love, compassion, forgiveness, what else matters really.

I remember Crowe as a cricketer, in the days of Hadlee and Chris Cairns, I think he had a brother that played as well. I remember Chris Cairns bottle bat that he hit for miles. I vaguely remember Crowe to be a fierce competitor that has clearly been changed significantly on his journey with illness and confronting mortality. His words were real comfort, they make sense.

"I don't have any fears or doubts".

I am not there yet Martin, I have plenty of them for sure, but I'm working on it. All the best for your journey brother. I'm sure you know it but tomorrow is always another day.
Trev.

All that Free time you have

Free time, I wish.

I am not working, because I cant. I cant because I daily deal with nausea, massive fatigue, my spinning world, continuous feeling of fainting, doctors appointments, more doc appointments, different doc appointments, infusions, researching drugs, working out drug regimes. I have taken time off to deal with the cancer and the treatment, and its certainly more than a full time job.

I wish I had more time and better health to use the "time off" for good rather than evil. I wish I could have gone to the swans club game last week, or Ethan's training, or picked up the girls from the station, or driven Jane to work. These are things I cant normally do, normal things, the ones that I cant goto because I cant stand up for long periods, nor drive, or because I am trying hard not to throw up the majority of the time or laying down to stop my head from spinning for a short piece of relief. I force myself to get out sometimes, just because. I took the dog for a walk a couple of days back, made the 20m up to the park, then virtually kneeled down and threw the dog the ball for a few minutes, that even felt too much at the time. Got to the Swans fan day this morning, awesome. After getting ourselves a coke, sat in the shade for a while to get it together, spend about 40 mins walking around chatting to the players with E and Lyss, that was clearly enuff, had to head for the car.

Its been a bit of a tuff week after my new chemo regime started last Monday. Been feeling up and down, hoping that the switch would flick and I could enjoy a couple of days, but not quite. Hoping that will come as I start getting used to and coping with the new chemo drugs, hoping. Now back in tomorrow for another dose of the Erbitux. Hopefully we can hit it with something before they pump it in me so we don't mirror the reaction of last week.

So anyone that has told me how bored I must be, I assure you, I am far from bored. I am sick of the time off, I am tired of the time off, I am sick of not being able to plan too much, knowing that I have limited standing time. I want no more of this so called free time that I must have. There is no boredom from being off work, there is no time to sit and enjoy myself or get bored.

But, we will keep working on it as tomorrow is another day.
Trev.