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.