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

The Journey, is it still going? Are you still here?

I'm in an funny situation. I am still here, who would have thought?

When I was diagnosed in July 2014, the prognosis wasn't great. There has also been some times along the way when things were going downhill quickly, and then turned it around. But, I am still here, let me come a little closer, and slowly repeat that in my most enthusiastic voice, "I am still fucking here!!!!".

I remember many times looking into close friend and families eyes, with some of the not so good news knowing that they are wondering "is this the last time we will see each other?". I know I have thought that at times. I remember speaking to good mate Davo, and once he said I wasn't sure about calling you, wasn't sure you were still here! But on it goes, on I go. I am very proud of the fact that I am still here and still in the game, still kicking a few behinds (goals are a little out of my reach so I am happy with a few behinds, and I guess a double meaning of "kicking butt" for Kicking Behinds works for me too). Bit battered and bruised, but still in the game.

So when I say I am in a funny situation, the situation is that my journey has gone on longer than many of us thought it would. So its a funny situation. Lots of people made a big deal of it all in the beginning especially  making things easier for me and my family, food rosters, lifts, lunches, catchups, visits. Honoring with awards, life membership of the footy club, articles in the news, mentions in newsletters, the recent AFL award, all those things I say in the humblest way I can, are fantastic, and really give me a reason to keep punching on, keep trying really, really hard to wake up tomorrow with a smile and a wave. They have been, and will continue to be, awesome. The continued catchups are wonderful, that's what life's about, family and friends, relationships.

But I am sure that with the fact that I am still kicking that there is an element of tiredness of the journey. I am sure people get sick of asking me how I am and getting pretty much the same answers. I know, people are nice, no, I mean people are great, you are all great. And I know its always genuine concern, but I also understand that because of the way it has gone, that there is some "same-old-same-old" with it. In a way, I sometimes wish it would go one way or another, either I would dramatically get better and life would return to normal (yep, preferred option for sure), or it would go the other way. If you are going to get me, then get it over with you bastard.

So I understand when I start to ramble on about chemo and treatments and drugs and poo and pain and meds, feel free to glass over a little, or not. Just letting you know I understand and you are not offending me in any way, I just appreciate spending time with you.

So today's blog is a little heavy, but as always just saying whats on my mind, being raw and honest. Hoping to give an insight into how I, and possibly others in similar situations feel.

So I continue to enjoy my catchups, spending time with the people I love. Was great to get out on Sunday and watch E running around at Swans training, snapping a few photos. Will continue to get out and enjoy life, today and tomorrow, as tomorrow is always another day.

Love.

Trev.

 

The Lottery

The lottery continues, day by day I get up and just wonder how I am going to be today.

The chemo seems to hold no real consistency on what it brings. Each day I wake up glad that I am still here, glad to greet another morning. But after the initial move to the coffee machine, I start to wonder how I will be by lunchtime.

Things have been really good, have been having a good few weeks. Last week had a couple of days where things went a bit pear shaped, just couldn't get off the lounge, the fatigue was once again massive and hard to deal with. I wonder why it works like this. I always expect that we could work out trends, when is good when is not. Is morning better than evening, do certain foods or activities set stuff off, but I just cant work it out, each day is a bit of a lottery

I'll keep trying, trying to work out the line of best fit to enable me to keep on top of it. If you are dealing with friends or loved ones going through some chemo treatment, are they the same? They continue to tell me it hits everyone differently, so I guess its all part of the lottery. be patient with anyone you know that is getting hit with the weed killer, often you wouldn't know what is going on, how they are really coping, be patient, be empathetic, just be there for them.

Great to catch up with a few East Hills Old Boys at the anniversary open day. Thanks for lunch Healz, and great to meet up as always guys, love you all like brothers.

Class of  '82. Impressive bunch of roosters.

Mmmm, burgers.

Have my smaller chemo tomorrow (Monday), then my next progress scan is on Wednesday with results coming through on the 14/12. Bit anxious as usual, bit of SCANXIETY eh Jo?

But will ride through the week with some worry, some anxious moments, some doubts and fears, and some hope and optimism. Nothing I can do now will change the results, so I'll get through today and hopefully wake up tomorrow and deal with whatever comes my way, as tomorrow is always another day.
Love.
Trev.

Keep Making Decisions

I have this feeling that I need to keep making decisions. Its always about making decisions, after each scan, each treatment, each doc appointment, we come out and we make another decision about what next, what approach, what to change. Once I stop making decisions, then that's it, no more.

I got reminded of this last week when one of my FB Bowel Cancer buddies got told to go home, try and keep comfy as there is no more that can be done. I feel for you Pete, I shed tears for you and Paula and the kids. I can't understand how you must be feeling, but from afar admire how I know you and your family would be handling it, play well my friend.

All of us on this Stage 4 cancer journey are likely to face this at some stage, some sooner, some later. But until I get the talk from the onco, I will continue to make decisions. I think my onco likes my approach, I go in there each fortnight with some research and thought and we have a good robust conversation on what next, and always make some decisions. Some good ones, and maybe some not so good, but irrespective, we keep making decisions.

So today and tomorrow we will continue making decisions, as tomorrow is always another day.
Love.
Trev.

SOB's Dinner, a couple of weeks back.

Chemo Day

Sitting down on Sunday night thinking about tomorrows chemo. Do you know anyone that has been through, or is going through chemotherapy? Just some thoughts about what to take with you, what works for me.

1. Bring with you a good attitude - I am known at the SAN for my collection of Hawaiian shirts. It all really started as I need to wear button up shirts so they can access my Port,  and the only button ups are either business shirts, or my collection of colourful Hawaiian shorts. But it drives my attitude  it brings smile to mine and others faces. If I am going to be there, I might as well enjoy myself. Check your attitude, chat to the nurses, just go with it.
2. Water - bring a bottle of water, the hospital will be able to supply, but be well hydrated. If you are being accessed through a vein in the arm, then need to drink lots to make it easier.
3. Emla patch - if you are going in through a port, then ask the nurses for an Emla patch, put it on an hour before and it deadens the skin for the HUGE needle they shove into you.
4. Something to do - I have my chemo series that I watch, only at chemo. Remember the series Kung Fu. I'm right into it, its calming, and gets me through, funny heh? But whether its a book, puzzles, magazine, music, iPad with movie, whatever gets you through the day. Something that takes your mid off the big needle dropping the weed killer into your body is a good thing. If you are taking iPad or movies, then dont forget your headphones.
5. Meds - make sure you aren't caught short if you are there for a while. You are able to mix in your normal pain meds, just check with the onco first.
6. Fruit Tingles - good for when the metallic taste thing kicks in, they seem to jump start the taste buds in a way. Although you probably wont find any in the St Ives area, as I have bought out most of the local shops supplies.
7. A friend - some like to have someone sit with them during the session. I notice some people have the same loved one each time, others have a roster of friends that come along. I actually like drifting off into the life of Kane, wandering the earth helping people. Its whatever is best for you, whatever gets you through. Maybe vary it all.
8. Bring it - to add to number 1 with the attitude, just bring it. Bring your sense of humour and laugh a little with the nurses. Bring your faith in your medical team. Bring your fierce determination to survive, keep that one with you. 

Getting yourself in the right mindset for chemo is another topic, but bringing the attitude is important.

So been a great week. Good to catch up with Jillan, Paul and Dave. Had a blast at some great friends wedding, caught up with a few other good mates there as well, what a great night to be part of. Also good to continue watching E do well at Footy, hoping the season never ends!

 

So as we got to Sunday arvo it all caught up with me a bit, missed out on the street chrissy party with a well earned doze on the lounge. Back to chemo on Monday morning. Looking forward to another fun week ahead, and tomorrow is always another day.
Love.
Trev.

Winning

Been having some wins lately. Are there changes in the wind?

Most days been feeling pretty good, having a nanna nap in the arvos most days, but the reduced weed killer is doing ok. Quality of life they say, so its good to be able to get through the days with clarity, lots of chat, lots of laughs.

Wins. 
Before my Melbourne trip the NSW AFL guys did an interview and they finally got it up on the website. Then the North Shore Times did a piece as well. Very proud of both, came out well. Thanks to Jane and Ali for some of the photography.

• North Shore Times Article
• NSW AFL Article

Exercise Physiologist again this week went well, got some more strengthening and resistance exercises to do, and hopeful to improve energy and fatigue. See him again in a few weeks and hope to have some good progress, ready for a great Christmas.

Catchups
Had a walk along Dee Why beach last Friday with Luke. Great day, apart from it being a zillion degrees  Great morning and great to spend time with good friends. Hope to do it again this week.

Had our 5th (I think 5th) SOB (St Ives Old Boys) dinner with some good mates, great chat, although not sure I will be going back to Warimoo Woodfired Pizza in a hurry. Slowest service I have had for a while. Good night chaps, happy Christmas to you all and see you at the next one. Good to see Robbie remember this one, missed you Goodey.

Great to catchup with the Fardys again, and with Greg and Kim. Good to catch up with friends as usual, and was good to feel up to all of them too. Pretty busy week but went superb.

 

Usual week with E at Swans, seems to be going well so far, but for me its great to sit on the sidelines and watch. No off season in this house, rookie draft is on next week, plenty to keep busy with.

Update
So had my small dose of weed killer today, pretty weary, but doing OK  Looking forward to the week. Pain is still increasing little by little, but its under control. Increasing the meds just a little to deal with it. Had a talk with the pharmacist yesterday and nurses today, so will just keep the discussion up and play it as it comes.

1 day at a time, but at the moment plenty of wins are happening  I'm sure more are coming tomorrow as tomorrow is always another day.
Love.
Trev.

Planning Ahead

Have recently had a few conversations about planning ahead. What I mean is that in my current state, how far ahead is reasonable to plan ahead?

Some may remember my anxiety over my licence renewal, they sent me my licence and asked me to renew for 1, 3, 5 or 10 years. I froze on that, as I don't like to waste money, so how much will I renew for? Here is the entry if you want to revisit.

So we have a few things that have come up for 2016, couple of concerts and sporting events that I wouldn't mind going to, also what to put my hand up for in the footy season. So what do I do?

Some say I should just plan for if everything stays as is, because it might, I might get some amazing results from treatment and so be cruising through the year. Some say, or imply, that if I am not completely positive with the potential outcome that I am heading in the wrong direction, you know, gotta be positive, all the time.

I take a different perspective on this though, I haven't entirely worked it out, but reasonably clear on my approach. I AM positive, optimistic, hopeful, that's me, that's how I have always been, so nothing changes in that. However I am also pragmatic, logical, realistic.

• I do look at the worst case scenarios, I believe that it gives me some time to plan for the worst and hope for the best. 
• Planning for worst case means that if the worst case scenarios don't happen, that it looks good, not hard to find the silver lining.
• I plan for success, but also plan for other what-if scenarios. 
• I always need to have a plan, not always a good plan, but I need a plan.

So I still hesitate at the 2016 planning. Some things I do plan for, hoping that I'll get there, but other times I don't, would rather play the wait and see game. I'm not always sure why I make each of those decisions, maybe the time of day, or week, maybe the weather, I'm really not sure. But playing the wait and see game is also planning ahead, it may not be me being as positive as some would hope that I would be, but it is a plan and a realistic and practical one. What I ask of you is to please let me be pragmatic and realistic sometimes, please respect that of me, it is part of my makeup.

So this week has been awesome. It seems like my bounce happened last Sunday and has continued feeling good for the week. Still get very tired easily, but nothing like the fatigue of weeks past. I had a great visit with an Exercise Physiologist this week, I reckon this will make a difference for how I feel over the next few months. Really liked his approach and how he listened to all I had to say, thanks Brendan, just a shame he is a Hawks supporter.

Catchups with Shane, Shaun, Tim, Edmund, lunch with one of my oldest and best mates Smithy and wife Kerry, just an awesome week. Was so great to see the progress from  Luke, been on a donkey ride to hell and back and starting to come good, you're inspiring mate. I am certainly tired today, but worth it for the great week I have had.

Shaun & Shane

Ed

 

Tim

  

So I am looking forward to another good week. Tomorrow I will see my onco Josie, get my bloods done and have my big weed killer day. But bring it on, ready for it with renewed vigor  and even though tomorrow is a weed killer day, tomorrow is always another day.
Love.
Trev.

Mojo Rising

Well its time. After a couple of weeks of some disturbance in the force, time for mojo to start bouncing back. Started yesterday dropping E in at Centennial Park for some more footy work, then was awesome to catchup with the Peterson's and the Pyc's for some food and chat. Trent, you will be happy to know, no salmonella, that pink chicken turned out fine!

So mojo is rising, its all starting to come back again, time to bounce back from the "walking dead" into the land of the living.

I find I am drawn more closely when I see a report in the news of cancer, whether its a patient or a treatment or a death. This weeks was a great story about a Christchurch school kid that was diagnosed with a rare form or cancer the week before graduation, and the wonderful speech that he gave at graduation night.

CLICK HERE!

For a teenager to face it like he is was very brave, I thought his insight was impressive.

"Here's the thing, none of us get out of life alive, so be gallant, be great, be gracious and be grateful for the opportunities you have".

Wishing you all the best Jake, you are a brave young man with a tough time ahead, but you sound like you will front it and do your best.

So the fatigue has been harder than I though it would be this week, just something I cant pick what each day is going to be like. But yesterday and today I feel good, ready to take on what comes. Those down days I also get tired, cranky and much less tolerant, not nice to be around I know. Apologies to my family for having to put up with that. But with some hope and good management the good days will outnumber those other ones and we can chat, and laugh and joke a little more, and enjoy life.

Was great to catch up with chemo buddy Lisa this week, I am in awe of your approach and brightness and optimism Lisa, hope that some of that rubs off on me sometimes. Good lunch with Dave T, and then to catch up with the in-laws for Maja's birthday. Was more difficult than usual to push to get to each catchup this week, but its important for me to catchup with all. Really look forward to these every week, so thanks for being there.

Sunday Footy, the season never ends.

With Mojo Rising I find today is a good day, I am whipping this weed killer infusion, easy peasy. And if today is a good day, cant wait till tomorrow, as tomorrow is always another day.
Love.
Trev.

The Promise

Having a few bad days, well, bad moments I suppose interspersed with some good stuff.

Over the 18 moths since diagnosis there have been plenty of ups and downs. When the chemo started coming good mid year my views changed from planning my out, to looking forward to Christmas and beyond. It has been a good ride. I haven't felt that well for a great deal of that time, but that has been overwhelmed by a sense of future, that I have more time than was initially planned when this started, that my positiveness and resilience was pushing me on. To me it was really a promise of future, a promise of more time, a promise of the unknown, a promise of disease management. 

My feeling now is of a withered promise. The discussions with the onco are now as much about quality of life as they are about treatment, and I know that when the balance sways more towards the quality of life discussion that's the downhill slide. We aren't there yet, we still have options to work through, but we are certainly closer. 

I am finding this a little harder to deal with at the moment. I do feel much better than previously with the new drug regime, we have dropped the toxic of the 3 drugs on the protocol, no more Irinotecan at the moment, and that has made a difference. But I still have a big fatigue issue that I am trying hard every day to overcome. I feel I am letting my family down, that I should be doing more, I try, but its difficult, and its difficult to explain how hard it is. I just keep trying to do what I can, when I can, and hope that's enough.

On the flipside, I am feeling a lot better with the change of drug protocol, and so perhaps thats why I am thinking more (is that a good thing or a bad thing?). Awesome to catch up with great footy mate Rob R. I have been coaching teams against Rob and working with him in different capacities in footy for 10 years, and have formed a great friendship. Also made the St Ives AGM yesterday, and was great to chat some planning with Rob McG and the gang. Such a pleasure to work with this years committee and looking forward to the early 2016 planning. Thanks for meeting up for lunch JG, always great spending time with you. Luke, good to see you finally home from hospital and working on the mend. Listen to your body and rest when it tells you to, take care and keep improving, 1 game at a time eh. Love my footy mates.

Rob R, good brekky bud.

Lastly I want to apologise for the sometimes downer conversations I have. However the objectives of this blog has always been twofold. First and most important for me its a way of boxing up my thoughts and I find putting them into writing makes them real and allows me to get those thoughts that are bouncing around in my head together, and to put them in a box and move them on. Secondly its to update people of my journey, where I am, what I am doing and feeling. All raw and honest. No sympathy wanted, none. 

But whatever I am feeling now I do know that tomorrow is another day. Just sometimes, its hard to look that far ahead.

Love.

Trev.

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.

Grand Final Week

Been watching all the footy shows this week, Brownlow last night, lapping up all the analysis. Just getting ready for the Melbourne trip and talking footy for the whole weekend. Just loving it. Jane and I leave on Thursday and back on Sunday. Lots of stuff on, hopefully will sneak in some red and white for the Swans to the MCG on Saturday, will see.

Its great to have the Melbourne trip on, such a great distraction and part of getting on with some normality and some fun stuff. But its never far from the surface and never far from reminding me about where we are at. My progress scan is due this week, so am having a CT early tomorrow, but even though the results will be available pretty quickly I have told my onco that I don't want to hear about them until my next appointment next Tuesday. Good or bad, let me enjoy the normality of the weekend and try not to think about the results. Usually I don't want to wait, I want the results as soon as I can, but maybe I am getting used to the waiting game, or maybe just a little more ambivalent, not sure.

Had my small chemo on Monday, just a dose of Cetuximab and various steroids, been an exhaustive couple of days but feeling pretty good, ready for the weekend. Stoma has been playing up a little, so just have to watch what I eat a little more and drink plenty of water, will keep working on it.

Was great to catchup with Mike and Trav, good to spend some time with Luke at MacQuarie hospital seeing what he is going through. Great strength and fantastic attitude, some really brutal stuff and just moving through it like a knife through butter. That is great for me to see, wonderful, helps me to see how I should behave through these travels, hope I am holding myself somewhere close to what I see in Luke, awesome buddy.

Went out for an impromptu dinner with Jane and E to "Abbys Beer & Burgers" down at local St Ives. Sensational burger, and had my first beer in around 15 months. Tasted pretty good. Not sure I will be turning it on too much, but was good to have a sneaky ale.

So just in case you want to know, my tip is ABH (Anyone But Hawthorn). Weagles by 2 goals, Priddis for the Norm Smith. Tomorrow is always another day, and my oath am I going to enjoy the next few.
Love.
Trev.

Sartorial Eloquence - Cancer Council Relay for Life

My loving in-laws have dressed in my favourite attire, the Sartorially Eloquent Hawaiian shirts and participated in the Cancer Council Relay for life.

Rodney, Cait, Maja, Sarah, Grandma Jean, Niamh, Sean and Dale, all looking very swish. Thanks so much guys for suiting up and treading the boards, raising the cash, and for your thoughts along the way. It is still open if any of you out there feel the inkling to donate. Each donation, large or small, helps to fund Cancer Councils research, prevention, information and support services.

http://fundraising.cancer.org.au/site/TR/RelayforLife/CCNSW?team_id=38793&pg=team&fr_id=2570

Special thanks to Grandma and Cait who are also fighting their own personal demons that this disease brings.

Had a pretty good week this week with coping with the weed killer pretty well, nausea is somewhat lighter with the new anti-nausea drugs, the fatigue a little better too. Great to catch up with old mate Marc on the weekend, it astounds me each time I meet a mate that I haven't seen for a while at how easy and comfortable it is, friendship certainly endures.

Was also great to catchup with Rob McG, talkin' footy, enjoy the hols with the family bud, you've certainly earned it. Wishing Rob up the road another happy 21st birthday  how many is that young fella, great to see you and Cheryl and Amy as usual. And a lovely lunch to farewell Ben with my best mates the Scotts. Not that we enjoyed farewelling Ben, but hope he has a great experience in Noosa and keep a spare lounge for me for sometime next year perhaps.

So excited about next week, even though the Swans wont be there, Jane and I will have some red and white to represent them at the AFL GF. Be great to catch up with our good mates the Dickys and the Whites over the time.

So keep on trucking, as tomorrow is always another day.
Love.
Trev.

Marcy Mueller and an awesome Sunday Brekky.

Coping with the limbo time - Waiting for scan results

I've previously referred to a life of limbo. We seem to live this life of waiting, waiting to see if the treatment is working, waiting for the next doc appointment, and the hard one, waiting for results. This life of limbo it often really hard to deal with, you are hoping for good results, but you really don't know. You want that call from the doc, but the early call from the doc may mean a bad outcome. You never want the doctors office to call you the day of your scan and ask you to be in his office first thing tomorrow morning, that's never good news.

So now heading into my next scan in a few weeks, I was thinking again about how I will handle it, what will I do to help me through it. I have read it referred to as "SCANXIETY", anxiety for scan results, good one. It shouldn't be underestimated the impact it can have on you. I read recently someones description of how they felt about waiting for scans.

“It’s like every six months, someone holds a gun to your head, and they slowly squeeze the trigger. You can hear the springs in the gun compressing, you feel the muzzle shake a little as their muscles quiver, and you tense up, anticipating the explosion. Adrenaline pours through your body. You try to keep from shaking, from crying, because the gun exploded twice before, and you don’t want to go through that again.This time, there’s a loud “click” of the hammer slamming down on an empty chamber. Just that sound explodes in your ears. Every muscle in your body jolts tight as the sound echoes – then rings away.No bullet this time.Good.But it takes awhile to recover.And no… you don’t ever get used to it.

Wow, I found that pretty close to what I have felt before. Always hard to sleep, to stop the anxious thoughts, and no, you never get used to it. So what are some of the things that I think I can do, and maybe others can consider.

What have you done before?
Are there ways that you have handled stressful situations in your work and home life before that have worked well? What are they? Can you use them in this situation?

Relax.
Are there techniques that you can help yourself to relax? Breathing exercises, mediation, reading, cooking, going for a walk? Often easier said than done right, but what do you normally do to relax and plan that into the few days.

Focus on the Positives.
Yes you will be thinking about it all, but the positive is no matter what you do now it is not going to change the result of the scan, what will be will be, so what is next in the various scenarios, what can you do to move on no matter what the result?

Talk about it.
Talk to others about it, partners, online blogs, put your thoughts down on paper. Problem shared perhaps? Make it clear when you talk about it that you are not looking for advice, you are just looking to bleed a bit, need a bit of empathy.

Accept that you are going to be anxious.
The worry is normal, it is something that will happen to everyone in this situation, and the point is, IT IS OK. Accept that you are OK to be concerned, but try not to spend too much time inside that emotion, try and bounce back with spending time with family and friends, laughing, chatting, just shooting the breeze. Don't let the worry be the single emotion that overtakes all others, that's not healthy for mind or body.

So the last couple of days have been pretty good, the fatigue this week seems to be improved, certainly better than the weekend. Great to catch up with JB and Cooky for brekky yesterday and see Mum and Dad. So with some preparation for the scan in a few weeks I will try and cope with the life in limbo and Scanxiety. School hols next week, will be good to have the boy home for a few days, looking forward to tomorrow as tomorrow is always another day.

Love.
Trev.

Onya JB.

The Mental Rollercoaster

I love this time of year.

1. Its between seasons, the cold seems to start moving away and the sun visits more often. Do I wear shorts today, or still don the jeano's? Sorry for that picture, my near hairless legs out in the open, some people pay lots of cash to have smooth legs like mine.
2. Its the end of the kids footy and netball seasons, we have finals, and wrap-up with great discussions about the year, and thoughts of next year.
3. Its AFL Finals Footy, Swans are always there, and again we are in it, but the games every weekend are such high standard, its great to watch the games and all the analysis.

For the mental challenges that my disease and treatment bring, these are all great distractions. I don't know how much the mental side plays in the whole scheme of things, but for well-being in general I think its significant. To have the distractions, and all the conversations around them, it enables me to focus in other positive directions.

But its never far from the surface, its never far from conversation, and I think that's OK. Its not about trying to forget about it all, that would be silly, and something that would be hard to do. I have never been a bury-the-head-in-the-sand sort of guy anyway. Its about providing the mind a chance to get away from the concerns and worries of the situation to give the mental piece time to rest and perhaps even to recuperate and repair. I still need to think about the practicalities and continue to ponder the various scenarios, be ready for the next onco appointment with my current crop of questions, but I also need to be able to separate from it at times.

Part of the separation I feel is that although to a certain extent the disease does take over, it cannot over the long term define who I am. When you refer to me now or anytime, I hope that the disease is just 1 of the subsets that make up who I am. A major one for sure, I understand and accept that, but I continue to work hard to make it not the defining one in my time here. What my hope is that when people do talk about me, that they talk about other things first, bad or good I am not sure, but that the disease is a secondary thing. Does this make sense?

So after having my smaller weed killer yesterday I am feeling pretty good today. I am a little surprised that I am feeling this way after such a foul weekend, but I am happy to take it while it lasts. Might have been the pep talk from JG on the way home yesterday, footy, cricket, finals, you know the drill. Thanks for the lift by the way JG, always there for me bud. So might get out soon and take the dog for a walk in the beautiful weather, and try and relax for the day to keep this feeling going for a while.

Happy that I can smell the roses, had some hayfever sneezing this morning so might restrict the rose sniffing a bit, but good that have had a switch and ready for whats next, as tomorrow is always another day.

Love.
Trev.

I'm not tired, really I'm not

The cancer related fatigue is one that I have been trying to explain for some time, but still don't reckon I have explained it well. Over the last month or so I have been really fatigued, one of the reasons they say may be the accumulated effect of the chemo. But how to explain what that means.

Fatigue in usually from activity, overuse perhaps. If you are tired, usually a good nights sleep will at least help relieve it. In the case of the cancer related fatigue, a good nights sleep doesn't cut it. Its a  real lack of energy, whole body tiredness is how I have heard it described. Its acute, its chronic, its exhaustion, and it doesn't really go away. It may be from the disease, or the treatment, it can come on quickly and be extremely debilitating.

For some reason this weekend has been pretty bad, spent most of the last couple of days on the couch. Sometimes I sleep, sometimes I don't, but its hard to function normally, to get up and get a drink. In the last month i have found I can help plan for it. I don't plan anything on the chemo day and the few days following, and then for later in the week i just make sure that I only plan to do 1 thing per day, 1 catchup, and can usually get myself up for that. After that, it tends to kick in and I am back on the lounge or in bed. But still working out how to manage that in a normal week, but this weekend has hit a little harder. Maybe I overdid it this week, or maybe its something else, I don't know. Got to get this right and pace it.

However, got to Cassie's netball Grand Final on Saturday, and Ethan's AFL presentation day today, in both cases, planned for it and got through it pretty well. We didn't win the GF, but Ethan received a runner up B&F award, congrats to both.

Loved catching up with Deb, Dicky, Healz, Fincha, and the St Ives AFL Old Boys. (Yep, probably over did it this week by the sound of it). Heading back in for chemo tomorrow, have an early appointment so better try and get some sleep eh. Try and wake up and enjoy the day chatting with the nurses, as tomorrow is always another day.

Love.
Trev.

Healz had left, should I superimpose him on?

Well that's a surprise

So what next? At the risk of you looking closely when you next see me and thinking or saying WTF...

My eyebrows have been thinning slowly, but just last night, interestingly, they pretty much fell out. Wow, now that was a surprise, but you wouldn't know it, as how do I raise my eyebrows in surprise, or shock? Or that one eyebrow raise of disapproval? I know the kids will be happy at that one. So BAB, those cracks about my oversupply of body hair are wearing a bit thin. Get it, wearing a bit thin, thinning hair? Jokes aren't as good when you feel you have to explain them, are they.

So part of the story is at yesterday's big chemo we are trying a couple of new nausea drugs, as well as another steroid to try and combat these side effects and get me back on track. The nausea seems to be better, which is great. The additional steroid still tries to trick me into not being able to sleep, tired, but can't sleep, and no eyebrows. So wonder if there is a grow-an-eyebrow drug I can take? Advanced hair, yeh, yeh. Will keep trying to try to get over this hump and improve quality of life.

So it's been a terrific couple of weeks on a number of fronts. A great Father's Day on Sunday. Always good to mark the milestones, had a great brekky, my favourite meal of the day and the kids put some great thought into pressies as they always do. They reckon I'm hard to buy for, I don't believe that, and they always do so well I can't be that difficult. Wearing my new Swans hoody this week. Great to catch up with Al, Sarah, Rog and Jillian last week, and Luke, Kate, Ollie, Ella and Ava on Saturday, wishing you well for this week and what the future holds.

I wrote in a previous post, a couple of weeks back I was awarded life membership of my cherished ST Ives AFL club, so proud. Then a week or so ago I was awarded AFL Volunteer of the year for the Sydney Harbour Region. Then I got a call last week from head of NSW AFL, Sam Graham. First thing I thought was what had our club done wrong that he was calling about. However he delivered the news that I was awarded the NSW AFL Volunteer of the year award, and for that I was on an all expenses trip to the AFL Grand Final, flights, accom, brekky at. Government House, and also being part of and walking in the GF parade. Wow.

I then got onto tikitec and tried to get tickets to the GF eve Marngrook footy show. I love that show, but all sold out. So I emailed and the awesome guys at NITV and Marngrook have been terrific, Jane and I will now be at the show as a guest of the network, would not let me pay for the tickets. Wow.

Kids are jealous, but will be a great weekend away for my lovely wife and I, and hope to catchup with a few Melbourne mates as well.

So putting up with the nausea and fatigue, watching some crappy movies, with the knowledge that tomorrow is always another day.
Love.
Trev.

Talking footy... and stuff. Onya Al.

Its all Relative

We all complain at times, about life, health, work, home, relationships. The great Aussie ask of "How ya going?", doesn't always need an answer, but have had many people say to me "well, I have nothing to complain about compared to what you are going through". Its all relative right?

But we all have our emotional challenges about various things, and its certainly not a competition. Your challenges and problems are as important as mine, to you, they are much more important. But I'm happy if when you talk about your challenges if my problems give you some perspective, which may sometimes give you some view that some challenges are not as bad as we sometimes think. Yep, it is all relative, but relative to your life, how important is that problem you are facing? 

But in my context, I love to talk through stuff with you. I hope you don't feel guilty or feel you have to say "...compared to your problems...". You don't, you never did before, so in that context nothing has changed.

A great mate was diagnosed with cancer of the throat last week, my thoughts and wishes are constantly with you, and will help in any way I can, whether to listen, chat, let me know what else I can do. I'll drop the moogoo and pawpaw over soon. Its all relative right, and I am feeling for you, these early days for you and your family will be challenging, hoping you can just run with it for now, 1 day at a time.

So been pushing through this week and feeling pretty good. Daily I'm still very fatigued, but trying to manage the days so I can get out later each week for a coffee and something adult contact. Seems to be working ok. As in previous weeks having some more time feeling a little sorry for myself, but working on bouncing back to keep on top of it all.

Was great to catch up with Jo last week and compare war stories. Wonderful to hear how well she is coping with her challenges, one very strong woman. Ethan's footy on the weekend saw them head out of the finals, and injury meant he just watched as his Swans mates played on the SCG. But hopefully he will be back in a few weeks over the lower back injury. Cass had a netball win on Saturday by a goal, awesome game, bring on the GF. Also great to catch up with Hoody yesterday, love hearing about all my EMC mates.

Recently I submitted an article to the National Ostomy magazine (hand up, who knows what an Ostomy is? Time to consult Dr Google perhaps?) , and they published it in the letters section. They sooped it up a bit so was really happy with how it came out, so I have attached it here. They also asked me to do another one in a similar format, pretty pleased with that too. Loving this writing gig, fun, and pretty good as a strategy to box up some thoughts and ideas.

So its a beautiful day outside today, and I'm feeling pretty good. So will spend sometime with good friends and family and then tomorrow is always another day.
Love.
Trev.