The Bounce

When we watched our kids play sport, Jane used to say that they bounced. With all 3 of them we would watch them play sport, hit the deck and bounce straight up and keep playing, often with bark hanging off them. Get knocked down, then get up again, aint nothing going to keep them down.

Resilience. That's "the bounce". Maybe the kids got some of that from me. Maybe we all have it in us. There are lots of ups and downs in this journey. Lots of times when things get on top of me. But that's ok, the critical thing is not to spend too much time in the dark places, but to bounce back. Resilience is about the bounce, to get back to living life, getting back to some normality. Don’t get bogged down by the things you cant control. Get on with life while you can. The Bounce.

Having some problems with the neuropathy at the moment in the hands and feet. They seem to be getting worse each day and making it harder to walk, making it harder to do some simple things. Couple more pain killers and pushing through, will have another chat to the onco on Monday.

Was lovely to talk to a workmate Jo yesterday. Jo is going through some really tough times with advanced breast cancer, and some really difficult issues. 3rd time cancer for Jo, wow. In our short conversation her resilience is clear, the way she talks about the treatment, the family, whats next, living in limbo between tests. I had a few tears yesterday arvo after our conversation. However, Jo definitely has the bounce, the resilience.

Went to the Biggest Morning Tea at EMC on Thursday, great to see Jillian and Roger and my work colleagues again. Cant wait to get back to work 1 day a week, planning on starting on Friday 25th June. Thanks Marty for your help again with he pool. Thanks Ed and BP for brekky, great to catchup with both of you. Also great to catch up with Smitty and Blowesy yesterday, love you guys. Best selfie yet fellas.

So let me bounce back again this weekend for some good times, as tomorrow is always another day.
Love.
Trev.

Where are Sleepy and Grumpy?

Today was my smaller chemo day, a few hours of weed killer. However today we decided to try it without knocking me out with the industrial strength Phenergan. After the event of Feb 23 when I had the Anaphylactic reaction to the Cetuximab, I was pretty anxious, bit of an interrupted sleep last night. On the flip side, I want to get off that Phenergan, it stuffs me for a few days, really washes me out. I would rather be just dealing with the side effects of the weed killer than adding this other stuff to it.

So we hit the weed killer without the Cetux, and waited. Lyss waited with me. 15, 20, 30 minutes, and no reaction. Once we got to 45 mins I reckoned we were clear. Nurses were pretty stoked too. So I then talked to Lyss, watched a bit of the Bourne Identity, and all was good. So fantastic, I walked out after a few hours with just the weight and fatigue from the weed killer, but not the intense drowsiness and other stuff that came from knocking me out for the day.

Awesome, no sleepy and grumpy today, just a little tired and washed out. Still don't feel fantastic, but the fact that we got through the morning without the knockout is doing great things with my head space.

So I am sure I will get a good nights sleep tonight, then wake up refreshed tomorrow, getting a little better each day, as tomorrow is always another day.

Love.
Trev.

Living Life

Living Life, what does this mean?

Does it mean going to work each day, then organising our yearly holiday? Does it mean ticking everything off the bucket list?

It sort of is everything, all of these, and none of these. Facing mortality has forced me to consider many things. Particularly what is important, what is a priority. And its not accruing things or experiences any more. Its more about the connections, the love, the relationships, the events and interactions.

Things are going well at the moment. The chemo continues each week, and I am planning things past next week. Things are starting to feel a little normal. Normal in an abnormal situation.

We are going to try to pull off the industrial strength phenergan next Monday. You may remember that I had to get this heavy dose each infusion after I had an anaphalactic reaction to the first dose. Well apparently you can get used to the drug, maybe. So we will still have the steroids, then instead of knocking me out with the phenergan we will try to go straight for the Erbitux. If everything goes ok then we will just continue. If I have another reaction, we will stop, flush, and then back to the phenergan before the Erbi. I want to try this as the phenergan really knocks me around for a few days, so if we can get off it then thats great. However, I am a little anxious about the reaction, the way it happenned last time.

So thanks Lyss for this weeks lifts. Was great to get to the Swans v Cats game on the weekend and catchup with John and MA, good to see Chris Y and Scott on the way home on  the bus, great to see Chris beginning to get back on track after his accident. The St Ives AFL club raised over $2K for Cansupport from RNS with our pink sock day. This is fantastic, more than we have ever raised since I have been involved. This is great, and I'm looking forward to go and present the cheque to the group. Very proud of the club and AFL community. Thanks for all my footy mates that have been helping with the food roster for us, as we have our head a bit above water now we will have a break from that, but we really appreciate all the help and all the meals over the last 9 months, I am so grateful. Thanks to Diane and Mike for organising all this time.

So I am back trying to live life just that little bit more. To create memories, to live and love and connect and engage, and to chat and hug and laugh and cry. Now that's living, and tomorrow is always another day.

Love.
Trev.

...

Another Sunrise

I am always grateful to see another sunrise, another day with my beautiful family, another day of chatting, spending quality time, thinking, pondering.

Was great to watch another sunrise with my great mate Dazza. This time we went to North Head. I remember back in the 80s during a slow night-shift heading out with Hoppy and watching the sunrise out there. Haven't been in touch with Hoppy for many years, would love to find him out at some stage.

So after a bit of hunting around North Head in the dark, Dazza's sense of direction kicked in and we found a couple of good spots for some great shots.

I have started to get some more exercise in and feeling pretty good about it all. Still not in great shape physically, but its clear that things are moving in the right direction. Thanks to some more antibiotics and some creams my infected toe is clearing up well as well. The rash and dry skin on my torso is still fairly prevalent, and some bits appear on my face every now and then which I hate, but its not too bad, I shouldn't be so vain eh.

Spent the weekend with Ethan in Melbourne watching a bit of footy, was great to get away after not doing much at all for the last 9 months. Great to plan more than a week ahead. Was a little anxious about it but worked out great, big E took care of me and made sure I didn't overdo it. Good to cheer in a Swans win too.

This Saturday is the Swans v Cats game at ANZ. The Jodi Lee Foundation are at the game in order to raise awareness for bowel cancer. These guys are doing a great job to get it on the agenda, and are pumping the Bowel Screen kits. I have to go along, just have to, I feel a bit of a sense of ownership for the game, so we are heading out. AFL have even stumped up for a few free seats for me, always like free stuff.

http://www.iknowsome1.com.au/

Was great to catch up with some great mates over the last couple of weeks, Dazza, Pricey, Flanman and Shane, Tone, Smithy, Ian, Riddles and Jules tonite, cant wait. Was great to take part in the article in the North Shore Times regarding our pink sock day with St Ives AFL, was really happy with the piece.

So feeling strong, still going through lots of ups and downs, but mentally feeling strong and resilient. Tomorrow the sun will come up again, I know, I have caught it a few times, and I know that tomorrow is  always another day.

Love.
Trev.

The Shitbox Rally

So stoked to be on the bonnet of Damo's car in this weekends Shitbox Rally.

Right side, Survivor/Fighter, 6th from the top.

Glad I'm not on the left side yet. Planning to keep away from that for a while.

Trev.

Not a walk in the park

Each time I think about how well I am, something pops up to remind me.

Last fortnights visit to the onco had a bit of a nasty ulceration in my throat which made it hard to eat and drink. Some Cylocaine at $114 for a small bottle, more pain relief, some simple Difflam throat spray, and a fortnight later and we are pretty good with it.

This weeks issue is a nasty infection in my big toe. Surely that's not related. But yep, the current regime is known for breaking up the skin on fingers and toes. Fingers and toes have been having lots of dry skin and bit of breaking up on the finger extremities, but toes? Give me a break! So this week, more creams, some heavier antibiotics, walking with a limp, and see how it goes.

As the guy who jumped out of the 10th story window, as he was passing the third floor he said "so far so good".

Thanks so much to Dave T and Chelsea for my lifts this week. Good luck to Bec and Gen for the journey to the toothman. Thanks again so much to Renee for helping to make  Janes 50th very memorable. You are a cake magician, both the work and home cakes were awesome, great time. I also enjoyed filling in for Rob at the AFL club Presidents meet this week, was great to see some guys again and thanks to Huzz for his nice words of welcome.

So, it's not a walk in the park, but so far so good. Limping off into the sunset as tomorrow is always another day.
Love.
Trev.

PS: Just worked out upon saving that this was my 50th post in this blog. Very proud to be still writing, and very glad and a big thanks to all the medico's (particularly Josie) that I am still here to do it. There have been times that I thought I wouldn't make this far, and yet, we are now heading in the right direction and have never felt stronger mentally than now. Rock on.

What was that word again?

My parents are both still in pretty good health (better than me really, the buggars), but as dad is now over 90 there times when he loses a few words. We look everywhere but rarely find them, they are just lost!

During the chemo treatment many people have talked about "chemo-brain". It seems to have a lot of the symptoms of oldtimers. Forgetfulness, focus, clarity, short term memory, and add to that mental fatigue.

My role at work involves running workshops, meetings, up front of loads of people. A key part of it is the focus, the keeping on track, thinking on your feet. I am concerned, as some of the things that I suffer from as a result of chemo-brain directly affect the things that I need for my work, the things I am, or was, good at.

I lose words, I get off track easily, I find it hard to focus, I tire very easily. You might think that we all suffer from these things, that's true to an extent. The issue for me is the difference between what was, and what is, and I notice it. It concerns me for sure, but really, what will be will be. It wont stop me from having a crack, getting back into it and seeing what happens. I am lucky that I have some great work colleagues who I am sure, positive, will be understanding and help me through it.

Read an article today about chemo-brain which explains it well and brought it back into my thinking.
http://www.iflscience.com/health-and-medicine/cause-chemo-brain-discovered

I am coping really well at the moment, mind is still really strong, body not quite keeping up. Jane turned 50 last week, we had some fun with cakes and dinners, was great. I am starting to plan stuff past next week, feel a new lease on life. Heading to Melbourne next weekend with Ethan to watch some footy, have a boys weekend. Should be great.

Tomorrow is always another day.
Love.
Trev.