Another small hurdle

For near 12 months I have been working towards heading back to work, putting some normality in life. I enjoyed my job, but its not necessarily the work that I crave. Its things like:

1. The social piece, shooting the breeze, adult contact, relationships. 
2. The idea of being valuable. To be able to do stuff of value to others, rather than asking people to do stuff for you.
3. The link to the normal, the idea that I don't have to focus on the disease and treatment 24x7

I have had 2 false starts in my return, both were medical, both times i had planned to return and unfortunately could not. This time I had planned to return this Friday for a day a week, and have been very excited about this for some time. It was going to happen.

Unfortunately my employer EMC could not accommodate the 1-day per week role, and have made a business decision to terminate my employment due to medical incapacity. So double hit. Not returning as hoped to give it a go, and employment terminated. 

I understand the reasoning, and am accepting of the decision, like lots of things I have to be, no choice really. But the timing is tough, and the decision is really out of the blue so its a bit of a hard one to stomach. I will still be covered under salary continuance insurance which pays partial amount of my salary, but it does prove several financial challenges for us, as well as some mental challenges.

But what will be will be, yes I had my heart set on it, but as someone told me today, it can provide me with other opportunities to do some stuff that I really want to do. Some sage advice, one that I will explore.

Wishing Jo all the best with her results, back into limbo land again, know that one well, but Jo seems to be coping extraordinarily well. Great to catch up with Smithy, Chez, and a great lunch with the Talkforce crew last week. Awesome to catch up with you all, and thanks for listening.

So although this week did not bring me what I thought it was going to, I am sure next week will bring something new, as tomorrow is always another day.
Love.
Trev.

 

Lucky Trev

I am a lucky guy. The last 12 months have been a bit of an awakening.

To be confronting mortality means that I constantly need to consider today and aim for tomorrow. I hug tighter, I talk deeper, I love harder, I laugh more heartily. More than I ever have before. I am privileged to have had this awakening.

It's not a spiritual awakening, it's a rational one. I reckon many of us don't have this. We carry on with our daily lives one day after another. It s bit like going through the motions, taking things for granted. Those disagreements we have about the stupidest little things, why. It's OK to have them, but bounce away from them as he quick as you can. No ones fault, just accept and move on. I've always had trouble with that one, but still working on it.

I urge you to take my lead. Your life and the lives of your loved ones are so precious, and short. Go home tonight, hug the kids for no reason except that you can. No need to go overboard, a simple hug, a touch, a look, a laugh, a few words. They might giggle and push you away, laugh harder at that, giggle more, hug more. Tell them you love them, every day. Corny? Yeah it is, but so what? Important and meaningful? My f*&#$en oath.

I get to hug my wife and kids every day, to tell them I love them, to laugh and giggle and listen and talk. More than I ever had before. How privileged am I to be in this situation and to be able to do that. Very privileged, very lucky.

I am proud to be heading into my 12 months anniversary since diagnosis and still be here. The have been many times when I didn't expect to make it, but I have, and hopefully heading in a good direction for now. And tomorrow I will hug and kiss and love and laugh, as tomorrow is certainly another wonderful day. And you should as well, really.

Love.

Trev.

The Battle

In a battle there is a winner and a loser. With me, if cancer wins, then it loses, as without me it cant propagate  For me, I can never really win, as I will never be rid of cancer, it will be with me till the day I die. It's always going to be a management of the disease. We will never be able to get rid of it, it will always be trying to keep on top of it. Remission is not a word that I can consider.

There are no winners and losers here, no matter what happens, no matter what the outcome.

So its really not a battle, I am really not battling the disease. What I am doing it trying to live with it, to live with the diagnosis, the issues and problems, living with the disease and all that goes with it. Whatever happens, I have always coached to play the game out right till the last whistle, finish with your head held high. I will continue to do that.

Been a great couple of weeks. Lots of footy, lots of catching up with good friends, lots of time with family.

I missed the ice-hockey last week that I really wanted to go along to with Jane. Ethan took my place, they had a great time. I saw a few days of Ethan playing footy, the State Carnival, a few club games. He had a ripper today against East Sydney at Acron, 4 goals and a great game. I also got to watch the Swans game at the Alexandria Hotel on Saturday night with good mates Mic and Fincha, and got to chat with good friend Davo again who was hosting the night. Great catching up with all you guys as always, love you brothers.

  

Now that I am off the phenergan I'm awake for each infusion. One thing that it was masking was the nausea, which hangs around for a good couple of days. My white cells continue to go down, so I have scratches and cuts and broken skin on various parts of my body that really don't heal so well, so its an everyday battle with more creams and band-aids and putting up with the discomfort. I also feel pretty awful some days, and find it hard to shake that, to bounce back from that sometimes physically, I put that down to the low count as well. The continuous fatigue sometimes catches up with me, but I think I am getting better at resting when I need to catching up on a bit and so being up for the times I want to be up for. My pharmacist Mark hears about my new problem every week, hes doing well so far. My feet and hands continue to be troublesome with the neuropathy, just got to suck it up and keep going with that.Thanks to my designated drivers for the last couple of weeks, Lyss as always, and JG.

Still looking forward to returning to work for 1 day a week starting June 26. I also have my next scan coming up soon to see how we are going. I do have a few extra aches and pains, but hoping they are nothing, or nothing bad that is. But I have worked out from previous experiences, I can't read these things, I just have to wait and see. Last scan was great, so no reason to think the next scan is also going to be great. Well, not too many reasons really, except the extra pains down around the liver and lung area, but I am sure they are nothing (did I say that already?).

So big day in at the SAN Hospital tomorrow, big day in infusion. Should be fun, always enjoy catching up with a great bunch of nurses, and Lyssa is my designated driver again. Put your hat on Lyss, rev the engine, away we go.
Tomorrow is always another day.
Trev.

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.

The heads up

"We are all going to die. If you are lucky enough to get the heads up that your time may be looming, you'll fight tooth and nail to hang around as long as you can". Jimmy Stynes.

What a perspective.

And on a daily basis I am fighting. Any timeline that we talk to the doctors about are simply milestones that need to be met. There is some pain and trouble along the way, but I will continue to face up to those and move on to work towards the next milestone.

The recent good results has allowed me to set some new milestones. Before that things were not looking great, and had some heavy discussions about time left. Now, we are back. Again looking to plan a part time return to work, to plan some family stuff, to look beyond next week.

Got to the movies earlier this week to see the new Avengers. Sensational family outing, loved it. Got to Nats 18th on the weekend at. Penno Pub too, awesome to see best mates. Barb and Daz. Haven't done those things for a while.

So continuing to fight tooth and nail as tomorrow is always another day.
Love.
Trev.

Reflections

Now I am about 9 months into this journey, and been entering posts on my blog for the last 3 or 4 months.

The reason I started the blog was twofold. 

• First was that I found so many things going around in my head, good thoughts and bad, and I find that by putting them down on paper, well virtual paper, allows me to define the idea from all these things bouncing around, box them up and then if needed push them aside or file them away. Allows me to move them on if I need to.
• Secondly it was to educate. I am an open book, I talk lots, too much many would say. I like sharing. I also thought that I knew stuff about cancer and treatments, but found out quickly that I didn't really know so much in the beginning, but oh how that has changed. So if I can use it as a way of sharing some info to help others be more open and knowledgeable about dealing with theirs or others cancer and other diseases, than that's great.

The other sub reason is that its a good way to update many on where I am at, what I am doing, how I am coping. But that's more of a selfish reason I reckon, and a byproduct.  I have had lots of good feedback from the blogs and really appreciate that. That's great, so thanks. 

So to reflect on the journey so far I just read through my last 40 somthing blogs. Brought back some good memories, and pumped my tyres a little to think of the way I have handled what I have known to be some of the not so good times. But also reminds me of the reality of where I am at, how quickly things can turn for the worse, how I constantly live in this limbo land, up and down, tears and laughter.

But I read somewhere last week that "...on particularly rough days when I cant possibly endure, I like to remind myself that my track record for getting through the bad days so far is 100%, and that's pretty good."

As I reckon I know better than most, tomorrow is always another day.

Love,

Trev.