Pink Ribbon Day, Movember, Daffodil Day, 7 Bridges Walk

Its great to see so many ways to support cancer research, these are just a few of them. The more funding does often relate to the decrease in mortality rates in the type of cancer, your donations do have a direct correlation. Breast Cancer has certainly had a big run over recent years and certainly the McGrath Foundation, pink ribbons, have helped the awareness and level of funding. Let me preface any of my comments with the idea that whatever cancer research you feel inclined to supporting, that's a great thing to do, and it can directly help many people now and in the future, so please, if you are in a situation where you can support, and you are inclined to do so, feel very proud that you are doing a great thing.

However please indulge me with my version, Bowel Cancer. Its not as high profile as many, and so does lack funding and research. I am hoping that when the time comes there will be a clinical trial happening that I can try, and further treatments rolling off the production line. Let me give you a few stats that hit me as pretty important (from "Lifting the lid on Bowel Cancer"):

1. Bowel Cancer is the 2nd most common (Prostate No. 1), and 2nd most deadly cancer (Lung still no. 1) in Australia.
2. Approx 4000 Australians lose their lives to bowel cancer each year.
3. 66% of those diagnosed with Bowel Cancer will live past 5 years, compared to around 90% with melanoma, prostate and breast.
4. For those with Advanced Bowel Cancer, less than 1 in 5 (16%) are expected to be alive in 5 years. I'm up to 18 months now and still in the game.
5. Bowel Cancer ranks 6th in terms of clinical trials and 7th in terms of no. of participants.
6. Last year Bowel Cancer received a 5th of the total grants and funding provided by Cancer Australia for research and support serviced given to breast ($7.3 mill v $1.3 mill) and Prostate ($6.5 mill v $1.3 mill)
7. Bowel Cancer received no gov't funding for support services whilst $31.5 mill has been dedicated to breast care nurses and $7 mill for prostate cancer support services over the last 8 federal budgets.

The paper does go on to talk about bowel cancer suffering from profile and funding, that it is often a more uncomfortable conversation. Hence my continued "speaking up" to continue to raise awareness of both the disease and early diagnosis. The poo test, keeping an eye out for change of bowel habits, regular colonoscopies from 50 on-wards, sometimes before that if warranted.

There is some great stuff on the the Jodi Lee Foundation site, and the Bowel Cancer Australia site.

You can download a full copy of the report HERE.

Had my short chemo on Monday and seem to be bouncing quicker with the change of treatment. Still feeling pretty washed out, but compared to a few weeks ago, feeling pretty good. Booked in to see an Exercise Physiologist in a couple of weeks on recommendation from one of my infusion nurses. Hoping to get some guidance and activities to up the fitness, keep the body operating at peak without over doing it. Was good to catch up with Nanna & Grandad today, who also brought along sister Sue and partner John, nice to catch up.  

And last week, on October 20, Jane and I reached the 25th wedding anniversary milestone. I am so proud to have made it, to be here, Celebrations were quiet, and reserved, but really, really important. Feel so proud to still be with the love of my life after all this time, and reckon that I love Jane more now because of this happening. Love you forever Jane.

 

So this week has started well, and tomorrow is always another day.

Love.

Trev.

  

I feel good, dadadadada... like i knew that i would, dadadadada

So good... so good.....

Thanks James Brown.

So this week is a little unexpected. After meeting with the oncologist on Monday morning we decided to try and get the body and mind in a bit better shape. His view as to how we have been going is that my body needs a break, reached a bit of a limit with the toxic weed killer, with how I have been feeling in the last couple of months its hard to argue with that. So we are off the Irinotecan, one third of the chemo protocol, and clearly the most toxic in the current protocol. I feel significantly better than what I normally would at this time of the week. That's good right? Right?

Of course it is good, but I am wondering that if I feel good, well whats happening on the inside. Are the less toxic drugs keeping the cancer at bay, is it holding it up? Well we wont know for another 8 weeks when we have the next scan, so I have to take a breath, and enjoy the better feeling. Its not all great, I do feel significantly weller, but I am still pooring weed killer in every Monday  so its not like it used to be for sure.

I often talk about this as a mind game, I am dealing with the physical issues of the disease and the treatment, but it always seems more challenging working through those constant thoughts of doubt and what if's. Pretty exhausting emotionally sometimes I guess. But we push on, we enjoy life as we can. We create some happiness and enjoyment out of what is a pretty abnormal situation for us all. Love the effort that family and friends all do to take part in that.

Got out for a kick with E yesterday, and apart from him continually telling me that my left foot kicks were better than my right, and the left foot was not so flash, it was good to at least get the feeling of the leather on boot, sharing a few kicks with the boy, felt good, altho was pretty stuffed after it, but worth the push.

Found a nice family photo from a dinner last year, happy days.

Great to catch up with old workmate Mike for a coffee, and with John for lunch. How good are those lunches at the cafe at Microsoft, sensational. Good to see you guys. Also like to bring up some great old friends that are on the other side of the world, but continue to be in my thoughts, Gail and Doug. Gail, your updates, cards, letters, postcards are fantastic. So good of you to reach out and I love the notes and updates and wishes you continue to send. Thanks so much guys.

 

Life is good, so good, thanks James Brown, and thanks all family and friends. Today is good, tomorrow I am sure will be even better, as tomorrow is always another day.

Love,

Trev.

Grass is always greener

I'd like to send out my love and best wishes through the ether to Luke and Paul, a couple of guys with similar battles, and going through some really tough stuff. Both you guys are handling things just sensationally. I couldn't imagine how hard with the pain, the not being able to eat, the weight loss, and the rest of the crap you guys are going through. The light at the end of the tunnel is not a train coming the other way! You are inspiring fellas, anything I can do to support you, just ask, I'll be there.

It is amazing how people handle the real life challenges. I am not talking about when your laptop crashes, altho, that probably is one of life's biggest challenges. When faced with the life threatening ones, lots of people do say "I don't know how I would handle it". I think there are varying degrees of strength and acceptance, but it really is a no choice option. The choice is to lie down in the fetal position, or to handle it, and most of us, and YOU would, just handle it. Just look left and right at the people around you, and I reckon that's pretty much enough to say, fuck this, I am going to deal with this and make the best of it. What that means may be differ from person to person, but we will all, mostly, just handle it.

What I do think is different is the levels of acceptance, pragmatism, optimism, resilience, and communication and openness about it all, and maybe a few other things. I have worked really hard on all of these things as I think they are vital for me and my family to work through it all in a constructive way.

Health Update
So an update on some health challenges. 2 weeks ago I had a scan which showed that the chemo is not working as good, and that the cancer had pretty much plateaued  no growth, but no more reduction either. We knew this day would come, just hoped it was a while away.

Had a detailed talk about it all with the onco today, was a very good discussion. His view was that based on the last few months, my body has had enough of the chemo and needs a bit of a rest. We have agreed that we will stick with the current chemo protocol, with dropping the most toxic of the drugs and just infusing the other 2.  The hope is that these will firstly keep the tumours at bay, at least a bit. Likelihood, who knows, maybe, maybe not. Secondly, this will give my body some time to recuperate, and hopefully get on top of the fatigue a bit. Then what I want to do and I told the onco that I will then have a good 4-6 weeks off chemo over Christmas and January, spend some good, well time with the fam.

So we are starting to look at really balancing the quality of life with the management of the disease. Is this a good thing, I don't know really, but at the moment I'm sure it is, I think it is what I need. But I am still in the game, still a few goals behind, but I am sure some of the future treatment will give me a good tail wind to kick with in the 3rd quarter, just need a little bit of luck.

Catchups this Week
A lovely birthday lunch for Lyss in at Cockle Bay on the weekend. Great to catch up with some good mates, worked with Steve C for many years across a few organisatons, great to catch up. The post-season wrap with Fincha, Mic, Brendan and Chop, as usual brothers, was great shooting the breeze and telling some lies. Good to talk with Vic & Paul, thinking of you guys.Good night at seeing Illawarra take the chocolates at the basketball with E.

So after my big day at chemo today, as we have reduced the drug intake i am feeling surprisingly well, albeit still being wide awake from the steroids at 1am. I'll take that, and I reckon tomorrow I will be just that little better, after all, tomorrow is always another day.

Love.

Trev.

Did I tell you the one about our year 11 English teacher?

FIncha, Mic, Digits, Chop, and me.
Wig wearers on one side, Hair challenged on  the other.

Go Haws, thats Illawarra, not that crappy AFL team.

Onya Stevo.

Owning the Curve

Got some great comments from the last post, thanks guys. Love the idea of owning the curve. I have to get my head around the curve, what it means, what comes next, how I will handle it, and been having a little trouble doing that. But I do have to own it, I do have to take some control, any control I can, and I am working on it.

Part of owning the curve and taking control is the idea that I will push through any challenge, will look for the silver lining, will make the most of each day. The result of that is often appearing normal, looking good (well as good as can be I guess, but I am a handsome rooster for sure, just ask me).  But sometimes I struggle with that, I push hard every morning to move forward for the day, to do something productive, to be UP, to be, well to try and be me or whats left of the old me. But let me tell you, sometimes its hard, really fucking hard to do this.

I don't usually grab these things, but these words pretty much encapsulated how I have been feeling a bit lately. Its not just discomfort, its fair dinkum pain, its not just tiredness, its this weight of fatigue that is indescribable.  I don't want pity, no way, but I need understanding, maybe compassion sometimes. I certainly need help and support to push on and keep UP, its not always so easy.

So its been a bit of a down week, still working out what the curve means, and how to handle the results, but will talk with my onco Josie next Monday and I am sure we will work out a good plan of attack, for now.

So each day I reckon I am coming closer to owning the curve, and so tomorrow I will be a little closer, as tomorrow is always another day.
Love.
Trev.

The Trouble with the Curve

Love my Clint Eastwood movies, have you seen this one, "Trouble with the Curve"? It's a good one, a baseball movie referring to the curve ball. Well my curve I am talking about is somewhat different, but onto that later. First things, the Grand Final weekend.

The weekend was awesome. To catch anyone up, Jane and I went to Melbourne to goto the GF after receiving an award from NSW AFL. Firstly on Thursday we caught up with great friends Dave, Michelle, Wilke and Monet. Then Friday we attended a ceremony at Government House to receive the award, met up with Gill and Mike (AFL people will know that these guys are reasonably important in AFL circles), then walked in the GF parade, fantastic to see Gabe and then Mic and Ali along the way. Then went to Marngrook, met host. Grant. That was simply a great day, words could not explain the high I was on after that day, and still are, so many great things, great feelings, and to share the most of it with the love of my life. Then off to the GF, and then met up with great friends Maree, Duncan and Claire before flying home.

What a weekend, just stoked. This is what life is about, creating shared memories. My wife and kids could clearly see how I enjoyed the weekend. Hopefully they shared some of that joy though me too. Real big thanks to the AFL for hosting the trip and having me along, the NITV guys for getting me VIP seats at Marngrook and organising the meetup with host Grant.

GF, Go Swans???? 

Me, Jane, Duncan, Maree and Claire

GF Parade, thanks Ali and Mic

Mike Fitzpatrick

Gillion McLoughlin

Marngrook, Host Grant

So some medical stuff now. Had my progress CT scan last Wednesday, but told them I didn't want my results till I got back and had my regular onco appointment yesterday, Tuesday. I have been doing progress scan about every 8 weeks which checks about 9 of the larger tumours. The last scan showed an average 15% reduction! the previous an average 21% reduction. Both great. Now for the "trouble with the curve".

The trouble is that it is a curve. Yesterday's results showed no further reduction In any of the tumours, in fact small growth in a couple of them. So we knew this time was coming, but we had hoped that it was some time off, that the current protocol would continue to reduce the cancer and get it to a point which made it easier to manage, get back off some of the pain meds. But that's not the case. There is plenty that we don't know, one is whether the current protocol will continue to hold the cancer for a while, or not. So we will continue the current protocol for now, and I expect will do a scan sooner rather than later to then see whats next.

From what I understand the further protocols are about maintenance rather than reduction, so the way I see it we are at the bottom of that curve now. We now look to stay at this point for as long as we can, but finding this a hard one to come to terms with, having a couple of days of thought and reflection on what it means.

So the current protocol may hold the cancer for a while, or may not. The next protocol may then hold it, or may not. Their may be some other protocol in test now that may come up soon. There may be some clinical trials on the way that I can jump into, and may have some success with that, or of course, may not. Might need a couple of days to think through this one.

So, I know where I am, I know we are at the bottom of the curve, but taking it 1 day at a time, and tomorrow is still, always, another day.

Love.
Trev.