Plan B

Well plan B of chemo did not quite go according to plan. Went in there with high hopes, ready for a good normal day of infusion. Wore my favourite red Hawaiian shirt for my 50th birthday. Everyone checking my details wishing me a happy birthday, Doc Josie, Janice, Pricilla, Debbie, Jenny, plus others all wished me the best with some good jokes and banter, I love the banter, I love the chats, love the happy smiling and giggling, it's awesome.

As the first drug, Erbitux, started going in I had a bad case of rash, itching, lips felt swollen, constricting in the throat. I held on, Jane held my hand, I persisted. This one has to work, so I have to last it out. It got to a point where I couldn't bear it, called over the nurse. It was great to see how quickly those nurses clicked into action to stop the infusion, start a flush, call the onco. Immediate relief.

But my concern is what that meant. Did it mean I could no longer do the infusion, did this mean I had already burned plan B? But they all assured me no, it's just a hump, and after some tears and consoling and assurance they pumped me with phenergan and I pretty much closed my eyes and dozed off straight away, and then over the course of the next 5 hours they proceeded to get all the chemo drugs into me whilst I was pretty much spaced out. True to their word, their assurances, we got thru.

Obviously I felt pretty ordinary for the rest of they go day and evening, but we have got thru the first bit of plan B. Tick that box. Hopefully can feel better later in the week and it all goes again next Monday. Can't wait. Well not really, I am happy to wait, or not, really not sure.

So happy birthday to me. Yesterday on Feb 23, 2015, I made 50, now that's a milestone isn't it? What a better present than to get thru what is hopefully the drug combo to keep me ticking for a lot longer. I'm happy with that. Oh, along with the family pie, cheesecake, white chocolate heart and chocolate flower arrangement thingy, all the cards, the texts, the emails, the FB posts, all the love of my family, well, they were all pretty good too. Thanks. No really, thanks heaps.

Today I might still feel a bit ordinary, but tomorrow is always another day.
Trev.

Staring at Strangers

I often find myself staring at strangers wondering, wondering about what their problems of the world are. Are they well, are they sick, how would you know? Sometimes at the shops when I see people stressing about some piddly things I feel like going up to them and telling them not to worry, there are other things more important to worry about than running a few minutes late, or your kid hanging onto the shopping trolley, believe me, there is.

Why the old folk sometimes think they own illness, or why do some people see illness and frailty as the exclusive domain of the elderly? The number of times at the shops at St Ives I have had oldies just simply push in front of me at the line at Bakers. Maybe they think the bread is running out, or is it that they think they are just more important than this young fit fella.

Sitting at the pharmacy the other day waiting for a script, I wasn't well, the world was spinning, my bag was full, I needed my meds and wanted to get home to have them. The ladies in the pharmacy sorted the script for the 2 oldies that came in after me before they did mine. Obviously they were more important than me, or were they sicker then me, or what? I was pretty pissed. I regard myself as a generous fella, but....

Do I have to lift my shirt up and show them the scar, and the bag? Do I need to quote my medical history each time I arrive at some place? Instead I get cranky, I speak up and tell them, peacefully, logically, tactfully, and accurately. Some get it, some don't. Those that don't try and justify their position and view, but the logic just doesn't hold water. So, North Turramurra Pharmacy, lift your game, your thoughts on priority customers are misguided and wrong.

Tomorrow is always another day.
Trev.

Doctors

I reckon I am starting to get more of a sense about reading doctors. For example, when you get a call from the doctors receptionist that the doc wants to see you first thing tomorrow morning, its not good news. Had that a couple of times. Now I tend to turn off fones the evening after scans (not really).

Heading into last couple of appointments. First CT, I headed into the waiting room. I had a bad feeling going in, but that could have been the dodgy sausage sanger I had before leaving (when did i cook them again? How many weeks have they been sitting there? Doesnt the microwave kill all the bad stuff?).

Josie came out between appointments, and eye contact was made, I said g'day, and he gave me a little nod. Not his usual affable self, maybe he is busy. But nope. Similar situation in after the last CT. Josie seemed as gutted as I was. He has been really determined all the way through, always has the right thing to say to move me on to the next step, to pick it up and run with it. This time, it was quite different.

I wonder what it's like with these guys, how they cope it's the lows. Are the highs and successes that good to make it easier to deal with the lows? In many cases they would be watching a persons demise, their transformation from healthy and fit young person to old and frail, in a short time. I feel for them. My life is in his hands, and I trust him implicitly. I question and comment and discuss, but he is so far up to it all.

So keep bringing your A game doc, I trust you, I'll work with you, we will do it together.
Tomorrow is always another day.
Trev.

The Weed Killer

A friend, Megan, refers to the chemo as weed killer. I love that, can I take that one Megan, great name?

It comes in packages with masses of warnings and fine print, the nurses have to gown and glove up because it is toxic to all it touches.  Make sure you don't get it in the good things as it will kill them too, but oops, sprayed a bit on that lovely flower over there, oh well.

Next time I'm up at Bunnings I'll check the shelves a bit more closely.  I am starting my new weed killer next Monday, Feb 23 2015, a very significant day. Ready to go.

I have a lot of my mojo back I reckon. The pain has certainly ramped up again which I think is because I am off the chemo for the moment. I am now trying a couple of Ibuprofen to control the inflammation  seems to work ok, good suggestion Barb. Had a great morning at work yesterday with my EMC mates, was lovely to go in and say hi, such a great bunch of people.

Tomorrow is always another day.
Trev.

Never Surrender

Been a tough week this week. With the news that the chemo wasn't working on Monday, has been hard to get my mojo back this week. Pain seems to have increased again, I don't want to up the pain meds, but think I may have to. Starting the new chemo regime on the 23rd Feb, with a weekly infusion on this one. Was planning about heading back to work part time but that is another unknown at the moment. Life in limbo again.

Great to catch up with Shaun, Shane, Gaz and Rodney this week, lovely to chat wit Rog, BP & John  as usual, thanks again Mike for being with me on Monday. I value my strong friendships with all you guys.

Read Jimmy Stynes book recently about his cancer journey. Have known a bit about the story, but never read the book. Cassie selected it as a chrissy present, perfect choice, and a good read. One of Jim's tag lines was "never surrender". I like that. Jim, I'm taking that one on.

Jim tried everything, i mean everything. From the standard chemo and radiation, to all the spiritual things he could lay his hands on, a number of trips to Bali for things like smoke therapy. The documentary which came after the book opens with Jim chucking a couple of ice cubes in a glass of his own wee and drinking it.

I am not spiritual nor religious  and as I look thru these alternates that people send me I look at the logic and science, show me the studies, the control groups, the effect. Mostly they are "well it worked for me". My theory is that often the alternates are taken alongside other more conventional therapies, as well as the power of the mind that the alternate may help to provide, its hard to then say what made the cancer go away.

I wonder when, or if, I will get to that point where I will start to try some of Jimmys therapies. He seemed to me to be grasping, trying anything that may work. But my reading of it is that he did this in deference to actually spending his final time with his family. There were so many trips and times when he was out of action due to some of these therapies, that it took away time he could be spending sitting with the kids or with his wife Samantha. That to me was not somewhere where I want to go. My focus has to be determined, but also balanced with the here and now.

Tomorrow is always another day.
Trev.

Did I run over that black cat again

Jane reckons that you shouldn't have to pay for the doc if they give you bad news. But the more bad news I get, it only means I am 1 step closer to the good news, I guess.

Doesn't feel so much like that at the moment. Results of last weeks CT scan says all the tumours are continuing to increase in size, the chemo is not holding them, not working. Gutted. I was sure, no, I was more than sure, that it was working. I've been feeling so well in my off chemo weeks. but yep, not working. Sometimes, life is shit.

So now onto plan B, Folfiri + Erbitux (check the links if you are interested in what they are). Good thing is that I start the new regime in a fortnight, so I have 2 weeks of feeling good before then starting a new weekly regime.  Now just gotta get the head back into gear to make the most of it, not going to be so easy this week.

Thanks so much to my good mate Mike for being with me this morning, hard to see a grown man cry right, but thanks for being so understanding.

Tomorrow is always another day.
Trev.

Movements

Well here is one a little more graphic than you were after, when I talk movements, it could be about midfield offensive strategies, but no, I'm talking bowel movements.

Now I have never been a great one with the diet, but have been a regular one with the bowel movements. Hell you could book me a place on the loo every morning around 10:30 they were that regular.

But alas, they have now taken that away from me. Wearing the bag, I can eat anything I want, barring a few items. The items that are a no-no, are corn, pineapple, peanuts, onions and peas. They dont break down well, so coming out they are trouble. Most other stuff I can eat. However I have to be careful that I can keep my passing's relatively fluid, otherwise blockage and that is trouble. As I am still taking Pan Forte and Endone, they are both codeine based and so bung you up, so have to ensure I drink plenty of water and have stuff that helps things un-bung.

So the laxative Movicol is one of my best friends, but just when needed. The other thing is exercise, if I can do some squats, or walking, it gets everything moving inside and so has the potential to get things moving. Great to know this, and great that modern medicine is giving this advice. When I was in hospital and had my surgery, the way to get the bowel working again was not drugs, it was exercise. Challenging on the day after surgery, but as time went on, the more I could walk and the more the body moved around to enable the bowels to kick in. It worked a treat, amazing.

So yes, I study my poo every day, look, texture, flow, timing. Its a kids science project gone mad. And if any of the boys hear me talking about movements at footy training next season, well lookout, just get out of my way.

Tomorrow is always another day.
Trev.

I don’t want to hear that I’ll be just fine

You'll be fine.
You will beat this.
Don't worry about it.
It will be ok, I just know it
When will you be all better?
Keep your chin up.
Don't give up.
Pray for a miracle.
All you need to do is to think positive.
Let me tell you about the new eye of newt remedy, my aunties, cousins, brothers swear by it.
You are only given what you can handle.

These are just some of the things that come my way, and I deal with them, but with some thought you may see that they are probably not really great things to cover off with me. Because you know what. I have stage IV cancer, even after surgery and taking out the original bowel tumor, I have tumors in 3 different organs, my liver is more cancer than liver.

So I wont be fine, I wont beat this, best I can do is manage it for as long as possible. I do worry, that's natural. I wont be ok, remission is not a word I can consider. I wont be ALL better, never, ever, ever. My chin points in one direction, if I kept pointing it up I would get a neck ache.You know me, do you think I will ever give up, ever, really (insert foto of my gorgeous wife and 3 terrific kids here)? Miracles, don't get me started. I think positive, negative, sometimes even neutral, let me do that, resilience is the plan, not total and unquestionable positiveness. Complementary and alternate therapies, well I will defer on this to previous blogs on the topic.

Lastly, platitudes, "You are only given what you can handle." I can handle 100 Auskickers out there on a Sunday morning, I can handle groups of high falutin sales guys, but this? Now, lets see how you can handle a baseball bat around your scone, I'm sure you'll be fine, dont worry about it, keep your chin up, dont give up, just think positive, as I swing.....

Say what you want, don't concern yourself with me about what works and what doesn't  as I am ok with it. I will tell you about what I feel about what you say, hopefully tactfully and considered. If you have said any of these things to me or to a cancer sufferer previously, just stop and consider it for a sec, tactfully and considered. Does what I say make sense? If yes, then great, if not, well then keep on doing what you think is right. If my raising these type of things with you makes you consider, then I'm happy with that.

My work is done here, as tomorrow is always another day.
Trev.

Its OK to say or do the wrong thing

Sometimes when chatting to people I feel that they are trying too hard not to do or say the wrong thing.

I hope that if you have been reading some of my blogs that you can come to the conclusion that there really isn't really a wrong thing to say, that I am pretty open to people saying whatever they want, because I am. Its important to remember that I WANT things to be normal, I want and need to be treated just like you have always treated me.

If you take the piss out of me, I probably wont cry, if you do something that you think may be insensitive, I reckon we can laugh it off. Don't you think so? Haven't we always?

So in some ways, nothings changed with our relationship, except these tiny little things inside of me, and that's how it should be.

So if you were worried, then don't be, lets just talk, and not worry too much about what we say or do. I would rather you say the wrong thing to me rather than say nothing at all.

Was great to catch up with Stevo today and see him recovering so well. Hope that Natasha's recovery goes well over the next few days. Good to have a coffee with Dom, great to chat. Wonderful to catch up with the old footy brains trust, Paul, Tez and Goodey for dinner last night. Yep, I went out for dinner, how about that, a planned dinner, I am actually planning stuff and not having to cancel all the time. Sensational to start going to a bit of sport, E's Academy training and basketball, always love to go and watch some sport.

Jane and Lyss still away, got a bit snowed in, in Boston, but now in Washington and seeing the museums and stuff.  CT scan was on Thursday and my second big news when the results come back on Monday will determine if this round of chemo is working. Last time, I had an bad inkling, and it played out that way. This time, I have a bit of a good inkling, so, well, maybe its going to turn out that way. If not, then we look towards plan B.

Tomorrow is always another day.
Trev.

Oh coffee, I love you

Used to be a 10 coffee a day guy. Well maybe not quite 10, but sometimes pretty close. For some time have been a 1 coffee a week interspersed with a few black teas. The taste became too bitter, didn't enjoy the coffee any more. 

Well for some reason, I've got a bit of the taste back. Having my morning coffee each morning, and then maybe another 1 each day.

Is that a big deal? Well I don't know. I tend now to think deeply about stuff, or another way of putting it is that I read into things. Every twinge, is that more cancer, and every positive change, is that my body changing for the better? Am I taking those 2 steps forward and not having to take the few steps back? Is my rekindled taste for coffee a sign that I am starting to feel my old self again (no pun about feeling my old self intended Chop). Is it a small return to normality?

This is such a head game, like lots of sports, so much of this journey is played out above the shoulders. Can you believe it, I've snuck in another sport analogy!

Back to enjoying my morning coffee, because tomorrow is always another day.

Trev.

Waiting for the switch

Had a great week last week, my off-chemo week. I had hope some of that resilience would run thru to this week where I had my chemo on Tuesday. Well, maybe it did, maybe it didn't  not really sure. Have been up and down as always in my chemo week. Weight pushing down on the shoulders, heavy head, spinning feeling, nausea (a little better than last round, I think), the calf cramps, the ankles locking, and that huge fatigue. The fatigue, wow, the fatigue.

I did feel well enuff to have a have a quick visit from Angela and Mike this arvo, great to talk footy, life and stuff. Good on the Chels, BP and John for lifts earlier this week. Worked with E to make the new doggie door for Saf, paid for it in the evening, yep, overdid it again, remind me next time to watch out for that. Cass and E have been terrific in looking after me, and ensuring I can do what I need to do, love you guys, and thanks so much. New dog Sapphire has fitted in so well this week, love her to bits already.

So now that its Sunday night I am waiting for the switch. Waiting till that little invisible thing inside decides its had enuff and its time to be OK again. Will it be tomorrow? Maybe? Or because I was a day late with the chemo because of the public holiday, maybe it will be Tuesday morning. It better be by Tuesday, if not I will call the authorities, or write a letter to the editor.

So come on baby, flick the switch, you know you want to.

Tomorrow is always another day, and hopefully, a real good one.
Trev.