Pain in the arse

I wish I had a pain in the arse.

As a Baggie and with a little less bowel than most, I don't get those pains in the arse, instead, I am much more susceptible to fluctuations in my movements, the runs or various levels of constipation. Because I am taking an amount of pain meds I get bunged up pretty quickly.

So to handle I gotta make sure I do a few things. Firstly a few laxatives, they get the gurgling started. Lots of water, lots of drinking, 2litre a day at least. And moving, keep moving around, physical exercise, this is probably the best thing to keep it all happening. Just have to keep things all smooth and moving along.

Wish I had that pain in the arse again.

Tomorrow is always another day.
Trev.

You're only as sick as you feel

This last week has been great, the best since this whole thing started. Took Lyssa to the airport and had brekky. Went to E's Academy Induction at the SCG. Got a romantic brekky in with wifey in at Cockle Bay, trip to Newcastle way to pickup E and also pickup our new dog. Then a 50th on Sat night, and an Oz day BBQ on Monday. Most we have done for ages, was sensational. This was my best week 2 in the chemo cycle.

Chemo is a bitch. On my fortnightly cycle, I have my chemo on Monday and for around about 6 or 7 days I am pretty non functional. Fatigued, nauseous, aches, cramps. Then on day 7 or 8 of the fortnightly cycle it all turns around. I feel nearly normal for the week. Certainly a little fatigued from the meds, but near normal.

There are 2 sides to this. Firstly it's great to feel near normals for that week. I can take back some control of my life, have some fun, quality time with friends and family. The flip side is it's clearly hard for people to see how bad I am in that first week and the times when dealing with the illness and the pain. My lovely wife and children see it, and they are the best in ensuring I am as comfortable in every way. They also have to suffer my groans and grumbles.

So in the second week, it's good. I am doing more stuff, and sometimes, just on the odd occasion, I nearly forget that I am sick. Can that be? Because you're only as sick as you feel.

Tomorrow is always another day.
Trev.

PS, our new best friend, Sapphire.

Life of Limbo

It's a life of limbo.

I find that I'm living in limbo land. First there was initial diagnosis, then several tests over the next 5 days to then wait in limbo for the next specialist appointment to find the results. As I started radiation, it was a waiting game, was it working, was it shrinking the thing, probably, maybe, and waiting for each milestone to then scan and check.

Surgery, was it a success, did it work, did they get it all, "we have sent the tissue away for biopsy". Again, waiting, in limbo land, was great to see surgeon Peter skipping into the room 3 days later with the statement "clear margins",  best news for months. The waiting, wait till it all heals, cant do anything for a while until it heals, so cooling my heels until the surgery heals (see what I did there, heels, heals!).

Chemo starts, is it working, or is that clever little cancer too smart for it. Lets do that CT scan, and then wait, over the weekend, results on the Monday said that the tumours are still bigger than back in September  but that may mean they grew a lot, and are on the way down, or not. So just wait, 2 or 3 more rounds of chemo, then another CT to check, so lets wait, lets go back to limbo land for a while.

OK, well I can deal with limbo land, if I wasn't a patient man before then I am quickly learning to be. But I am taking a bit of control of the revolving limbo land door. I am so excited to going into work tomorrow and chatting to a few guys about ways I can return to work, part time of course. What can I do, what cant I do, and lets have a crack. I am excited to be starting to get back involved in the footy club, slowly, and not too much, just some small things that I can help with, and chatting with gusto to all the coaches and guys on committee about the season. I am excited to be dropping Cass at work, picking Jane up from the station, ferrying the kids, and doing a bit more around the house ....when I can.

So I'm excited. This is the new normal. Of course its not like it used to be, it never will be, but its the new normal. A little more each day in my good week, and a little less in my bad week, lets have a real crack. I am greatful to have such good family, friends and work colleagues that are helping me with the new normal.

So I will continue to live the life of limbo, but to claw back some of that normality I have craved.
Any you know why? Because tomorrow is always another day.
Trev.

My Bucket List

Well in short, I don't have one. I used to have a number of things that I wanted to do before I died. Travel mainly I suppose, but as death has been fast forwarded for me, this has changed. Been doing a bit of reading and researching, and this view is formed as a result of that.

It is about looking at what's important, what's meaningful. If I had a bucket list now, it would never really end. The places to travel, the time there, the activities, the list would continue. But no longer for me is it about accruing, no longer about ticks on the bucket list. Those that know me will know where this is going. The most important thing for me is my family. What's important is to continue to spend quality time with my wife and children. I want my time and their time to be useful, practical, loving, great conversations, good fights, heavy talks, great makeups, lots of laughing. I want it to be present, in the moment, meaningful and lasting.

Well I really do have a bucket list, and each morning I wake up and look at it, but there is only 1 thing on it, and I need to make sure I fulfill that every day.

Love you Jane, Cass, Lyss and E. You are, and will always be, my world.
I love you more every day, and tomorrow is always another day.
Trev/Dad.

Oh the pain!

Well this week has been a good week. Its amazing that on Sunday I was still too fatigued and nauseated to do anything, then Monday the switch flicked and its near normal Trev back. Whatever the reason, I'm taking it. Feeling pumped.

When I had my bowel surgery, every small procedure that the nurse wanted to do I would ask "will it hurt?".  Answer was always "No", or "maybe only a little". I learnt after that the nurses meant it won't hurt THEM (thanks Barb).

I started pre surgery for the pain on 6 Hourly panadenine forte, and endone as needed. These are pretty fast acting, kick in after 15 to 45 mins. When my liver started getting angry the docs got me on Targen 12 hourly. This is slow release, so got to take it on time, once the pain hits, it's too late.

I find I get anxious about the pain, as now that I have had it, once it kicks in there is no going back. I get in a bit of a spiral when the pain comes on, so it's important for me to keep on top of this. The Targen affects me pretty badly, spaces me out, world spins, increases nausea & fatigue, I certainly can't drive with it. This was one of my few options when the additional pain hit tho, I certainly don't want to have to goto hospital and get pumped with morphine again, man was that a bad experience. Panadeine and Endone I seem to deal pretty well with, as long as they hit the pain OK. It's a balance.

In talking with lots of people about pain meds, everyone is an individual about what works for them. For some, Endone is a huge relief, others, it gives them nightmares, others, it hardly tops the pain for them. So having a great mate help me through what works and what doesn't, calling me each day during the critical time to see how we should adjust, that was the winner for me. Thanks again Barb. But the thing here is that there is no point being stoic and strong and sitting there in pain not being able to move. The pain relief allows you to function in some way, and allows your body to do what it needs to do to heal rather than focusing on the pain issues. So, don't be a martyr.

My goal is however to pull back as much as possible on the pain meds. I slowly weaned myself off the Targen, that was a big win for me, pretty happy with that. Longer term goal now is to try and keep decreasing the other pain meds. It's a real balance though, as I still remember what the bad pain is like, and I'm very anxious that I don't want to go there again, but I am working on it, without being a martyr of course.

So dealing with the discomfort and feeling relatively comfortable.

Tomorrow is always another day.
Trev.

I have a theory

A big sigh from my kids. Another of dad's theories. I like having theories and hypothesis. Might be the challenge of proving it right or wrong. Might be just that I like theories, not really sure. My theories are always (well mostly) based on some thought out logic and at least a smidgen of research. Like, "I reckon that route A is quicker than route B".

For example, I have a theory on alternate therapies. My theory is that an alternate therapy had any weight that someone would have thrown some cash at it and it would move out of the "alternate" column. I read some research lately about how some alternate therapies can potentially affect chemotherapy drugs, both the effectiveness and also create further side effects. Simple stuff like green tea for instance. That's the science.

I have had lots of people bring to me various therapies that their uncle or aunt were cured by.  I do like to be informed about what's available, so I am happy to receive those, look at the articles or YouTube clips. But I am currently trusting the science, and it's likely that I always will. But there may come a time that my view on that does change, I doubt it, but mind is absolutely open.

With my theories I am sometimes not right, after all, that's what a theory is about right. I am happy to be proved wrong, and so I really believe that I have an open and inquisitive mind. So if you have an asparagus concoction that you believe cures cancer, as long as there is some logic behind it, I'm happy to have a look. But what's I do ask is that you leave it for me to decide then, don't judge me harshly for not taking it up, or deciding that I think it's not useful, and don't press me on it as the response may offend.

Tomorrow is always another day.
Trev.

Baggie

Like most guys, I still like a good poo or fart joke. So there's a good place to start. My dad taught me that it was always better out than in. He used to let rip at any time, it was just what he did. At least when I do it I have a little giggle, his was a serious rip, no joke, it was like a medical or health thing for him. Maybe he thinks he is going to blow up if he doesn't let it go.

So these days, I no longer poo and fart like most people. I wear a bag, I am a Baggie. On October 14, 2014, Dr Pete took around 35cm of my lower bowel (along with a pretty large cancerous tumour), and then on my right side just under the ribcage brought the bowel out and sewed it in. It's called an illeostomy, as the illeum is the lower part of your small intestine, the ostomy part refers to the stoma which is the bit that sticks out. We call him Bob (don't we Dazza).

It's a hassle in some ways, but pretty amazing in other ways. The stoma, which is the little bit of bowel, is a couple of cms diameter and sticks out a couple of cms. The bag has a sticky part which is about 10cm diameter with a hole in the middle which goes straight over the stoma. It has a charcoal filter so doesn't smell, I empty when it fills up, and change the bag every couple of days. I have no control over what happens, so Bob tends to fart a bit. All I can do is put my hand up, yep, that was me. Licence to fart I tell the fam.

I had a great mate that is currently wearing a temporary bag, so when I knew that it was happening, I grabbed him and we had a few coffees and chats. That was essential in me coming to terms with wearing the bag. Plenty of people struggle with bags, both physically and emotionally. They become sore, sometimes you have blockages, some people have blowouts (ewwww), but lots of these things would be hard to deal with. Early on I had a couple of leakage issues, which I didn't deal,with well. The stoma nurse at the SAN saw me right. I can't thank enough the value that came to me from my great mate who talked me down on this whole issue and brought me very quickly to acceptance.

So now it's just another series of tasks that I have to do, like putting out the bins. Although I don't put out the bins, I make the kids do it. I hope to get a reversal later this year so I can go back and poo and fart like a normal person but will deal with that later.

One last thing, one of the first things my great mate asked me was how many people I know that wear a bag, and I said I don't know any. His response was that I bet you do, but you just don't know who they are. They are more common than you may be aware. Good call.

Tomorrow is always another day.
Trev.

I'll pray for you.

Let me start with stating A couple of things:

1. I am a card carrying non believer, but I respect your right to believe in your faith.
2. If your god has had some interest in me getting this cancer thing, I think that gives me a legitimate reason to pass comment on this issue.
3. If you have any play with your deity, then I am very happy that you put in a good word for me.

On a recent FB post where one of my cancer buddies is not in a good way, lots of posts of people posting "I'll pray for you", or "you are in my prayers". This is awesome. Even for a non spiritual person, this is sensational. It has so much more meaning than the religious one. Simply put, to me, it means I am in your thoughts, you are hoping that it all works out well, you are providing me emotional support, it's nearly like I can feel you wishes, it's awesome, so keep them coming, I am happy to accept. It is your faith, and I am so happy that irrespective of my beliefs, you think enough of me to help out where you can to support me. Thanks.

On the other side, I noted a post on one of my cancer buddies FB, the initial post from the cancer sufferer was about running out of chemo options. He had days to live, weak, posting was done by family. Many responses about thoughts, wishes, prayers, love. But one post went to their faith, and was something in the ballpark of  "don't give up, god will provide, miracles do happen, all you have to do is believe and have faith".  I found this very disrespectful, and denying the sufferers own faith and beliefs in favour of their own.

Pray for me by all means, I get that. But don't preach to me. I have my own beliefs, please respect them.

Tomorrow is always another day.
Trev.

Not what I was looking for

Today was a big day. Today I sat down with my oncologist with the results of last weeks CT Scan. We were hoping that the 4 cycles of chemo has had some impact on the tumours, and that hopefully that would show with a decrease in the size of them all. Results were not what I was looking for.

The last CT I had was a couple of weeks prior to surgery. The existing tumours are now larger than they were then. What we are hoping is that this means that they grew significantly between Oct and Nov, and once chemo started it has started to shrink them, just not far enuff yet. The other alternative is that they are still growing. We have decided to do another 2 cycles of chemo and then do another CT to determine which one of the above is happening.

So its a setback, pretty down about it for sure. I feel a bit like I am heading out the back door. But its OK.  If its working, then we continue on with the same regime for now. If its not, then we look to go to another regime, which like this one, may, or may not work. The key for the treatment seems to be to stay on each chemo regime as long as you can, because there will come a time when it will stop working, or become toxic. Just have to try and stretch that time out as much as we can. I was hoping I would be able to stay on this first one a lot longer with it working well. Maybe, maybe not.

So family has talked it all over as usual, a few tears, and then we park that and move on, back to a good day tomorrow. We are crossing our fingers for the next scan in a few weeks. I read Jimmy Stynes book this week and he described his approach to his cancer battle as "never surrender". I like that, it doesn't always mean fighting, it means that we will keep trying, keep moving forward, keep making decisions, keep enjoying each day we can, and fight when we need to. That makes sense to me. As I have said before, its not about staying positive and strong 100% of the time, its about resilence, bouncing back, seeing the good, accepting the not so good, and moving on.

Back to a waiting game now, work thru the 2 weeks of bad-week-good-week, then back into chemo again for the day the other side of Australia day. Might wear my Australian Flag Boardies that day.

Because, tomorrow is always another day.
Trev.

Can I book a counsellor for 3am next Thursday?

I tend most days to wake somewhere between 2 and 4. Sometimes I can get back to sleep, but lots of time I can't. Not exactly sure why I wake, could be the medication, could be time to empty the bag, don't really know. The head spins with thoughts, good, and not so good.

In speaking to fellow cancer sufferers, this doesn't seem an uncommon thing, the 3am wake. But maybe because it's quiet and dark it often quickly drops into reflection of where I am at and thought about what will the future behold.  Thoughts goto my family, what have I done to them, what will I leave them with, what will they miss out on.

It's hard to find the positives sometimes, but they are always there. With a wonderful wife and children I am lucky, I am blessed, I am ok. They will be fine, they are independent and strong, they will move on and deal with anything that comes their way.

So, if you are looking for a career change, the 3am counsellor may not be a bad idea. I might be able to find a few patients for you. But if anything, you know why I am sometimes pretty tired during your waking hours.

Tomorrow is always another day.
Trev.

Why Me?

I understand that this is a big question that worries many sufferers, why me? Why did I get it? What could I have done differently? Could I have found it earlier?

I remember having 1 night with Jane where we talked about this over a few tears! but I was thru this very quickly. Perhaps my oncologists handled it very well with me, not sure. For me, looking back, I had few symptoms, so can't see how I could have found it any earlier. The way these things in the bowel come on is thru polyps, and about 1 in 5 get angry and can move to become cancerous. That's all. Perhaps some diet, perhaps some bad luck. Irrespective, I am here now, let's look forward.

My question is where are all the dickheads? If you get on a train you will see a small percentage of dickheads hanging around. But it seems all the people I have come across that have this disease are good people. And yes, I am saying I'm a good person, that's a given, of course! All the people I have come across are giving, polite, real quality people. So where are the dickheads? Perhaps the theory is, become a dickhead and avoid disease. Maybe? Nah, scrap that.

Tomorrow is always another day.
Trev.

Scans, scans and more scans

Had a CT scan yesterday to review whether the tumors have reduced in size, waiting game now till Monday, always a waiting game, for results.

Over the journey so far had lots of scans. The normal X-ray, the rotating x-ray which zapping directed radiation at the tumors. MRI, and the PET scan.

The PET scan they get dressed up in space suits like they used in Lost in Space, give you the radioactive spiderman stuff, then lock you laying down in a dark room for a couple of hours. Bit weird, good that I like my own company.

The CT is an interesting one, this is my second time with this. It is a scan where they run dye thru you to check where the tumors are. A CT is better than an x-ray, but not as good as a PET, but it suffices for the purpose of looking at the existing tumors for size and gives an indication of density.

When I first had the scan, they give you some yellow drink that looks like wee, and tastes just as bad. Its supposed to put some coating on down there for the dye to go thru, as well as cleans you out a bit. Then a canula, altho for today they used my magic portocath which worked well. Lie down on the entrance to the big donut looking machine, hook you up to a large glass of the dye hanging from the ceiling which during the scan gets run thru the body, so all good.

So the first time I had this, as I lied down on the bed ready for the rotating donut, the young fella radiologist, gave me the spiel.

"So Trev you ok?"
"Yep, all good". He continues to click together the bottle.
"A couple of things I need to tell you, you will likely feel a bit of a hot flush."
"OK, sounds fine." He hangs the bottle ready to go.
"Oh, and you will have a metallic taste in your mouth, it will last for about 5 mins."
"OK, sounds fine." He fiddles with the clips to ensure it is all ready.
"Oh, and and you will get this hot feeling, feels like you are wetting yourself, but you arent".
"Umm, OK." He walks to the door, opens it, walks thru, about to close it and pokes his head in 1 more time.
"Oh, and 1 more thing, you are likely to get this hot feeling downstairs, it will last for about 20 seconds, and it feels like your balls are on fire. Alright then lets get started".
"Wha... umm...., uh..., but...."

So, radiologists do have a sense of humour.
Test complete, fire extinguished.

Tomorrow is always another day.
Trev.