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.