Carrying on

Hey there, still riding the roller coaster, good days, not so good days. Had my big chemo day yesterday so slept badly from the steroids, and feeling dusty from the chemo. Its an interesting thing that when I am on the downhill run later in the week I convince myself that I can do anything, as long as its working that I can do it and get through it. But on the bad days, the chemo days and the following few I wonder sometimes how long I can keep doing it. But we carry on.

Last week I had a glitch, had a blockage in my stoma. I think it was overdosing on KFC that did it. So started about 7pm on Wednesday night as the pain began. I am pretty good at recognising it, and usually when I have a bit of a block I have been able to free it. Water, Movicol, and moving around, squats behind the couch, twisting around, it gets the insides moving and has always worked to free whatever potential block i have had. However, this time it didnt work. More Panadeine Forte, some Endone, Movicol, more Movicol, lots of pacing and moving.

By 2am (now Thursday of course) I could take it no longer, woke Jane and off we went to the SAN. Triaged immediately, into the bed, didn't bother accessing the port as it would have taken 5-10 mins to get it all sorted, so straight into the vein and in went the Morphine. Some more Morphine, and then simply saline drip, and then after a few hours it freed up and blockage was cleared. The admitted me for the day and went home around 4pm that arvo. Pain has been my kryptonite all along, its something I remember and avoid like anything, and once it is there its hard to get rid of. I hate the Morphine, but man did it do the trick.

All the medical staff was awesome at the SAN. But it was interesting that the emergency nurses were concerned about my rash, whether it was infectious. This is the rash that the chemo drug gives me, that I have multiple pills and creams to keep it under control. You go into the cancer ward or the infusion centre and no one bats an eyelid, but they all have their specialties, so no issue with that.

Over the weekend my Junior AFL club participated in the #iknowsome1 campaign with the Jodi Lee Foundation about Bowel Cancer Awareness. So proud of the players and parents and officials that embraced this and was a great day. It was simply awesome to help drive this and hopefully a few more people do their bowel screen tests and check themselves out. Early detection.

So washed out for a couple of days, but all good and clear. So now will rest up for another day or 2 and then back to a few coffees and catchups and stuff around the house, and spending time with the fam, as tomorrow is always another day.
Love.
Trev.

We are heading in the right direction

Had a CT Scan last week, this one was to determine if the chemo is still working, if we are still heading in the right direction. The last one was around 8-10 weeks before, which showed that there was a 21% average reduction in the larger tumours. This one showed that the chemo is still working, this time around about a 15% reduction from the last scan. Awesome. We are keeping a lid on the bastards, we are heading in the right direction.

Jane was with me for the news, it felt good, not great this time, just good. After a few tears and hugs after the onco appointment it was back on the treadmill, back to chemo for the day, hook up the drips, watch a few movies, feel the fatigue, the rash, and the nausea again. It is great news, but was also a funny reminder that I am still on that road, the road I don't really want to be on, the treadmill of living from one scan to the next, one treatment to the next. I am happy with the result, really I am, it was fantastic, but every now and then I come back to earth and wonder why the fuck do I have to be going through this shit at all. But I'm there and there is no option, it is what it is. So lets move on, time to bounce.

I am feeling crappy now a lot of the time, I think its the accrued chemo is starting to catch up a little. I can do a lunch or a coffee and fire up for it, but then pretty soon after the come down is getting a little harder. Fatigue is massive, nausea comes and goes. The massive amount of support, calls, emails, texts, keeps my head well above water, fantastic, thanks all of you.

Had a great lunch with a few of my EMC brothers yesterday, how good was that. Thanks JB for organising, and great to see the rest of you blokes. It was great to talk shop, the issues and problems, the ups and downs, just generally taking the piss. You guys really made me feel still part of the fabric, felt really, really good. Thanks guys.

Was great to meet an online chemo buddy, Helen, earlier this week. Good footy brekky with Gooders today. Wishing Jacko all the best for recovery from a bit of real live bumper cars last week, hope you are feeling better brother.

Well feeling pretty good today, wishing the rain would go away so we can pack an overnight bag and head out to Heathcote on Sunday to watch E play footy.

Tomorrow is always another day.

Love.

Trev.

Where there's a will there's a way

Is there, is there really?

I have written before about the impossibility of being permanently positive. That you need to be able to spend time going through your emotions, anger, grief, sadness. But the key I think is to find a way not to spend too much time in those places, but to bounce back. Resilience.

Somewhat related is the view on will. Where there's a will there's a way. Have you heard of someone that had a life threatening disease, perhaps been given months or less from their doctors, and they beat it, they got through it, they survived. People sometimes say that the reason that they got through it was their unending and single minded focus to get better. They wanted to get better, they would not give up, they willed themselves better, they weren't going to die, they had too much to live for.

I think this is a simplistic view. For every person that has had that perspective and survived, there are many more that have had exactly the same outlook and not survived. Does this mean that their will or reason to live was less that those that survived? Of course not, in fact I think it is disrespectful of those that did not make it to talk that way and imply that they put less effort or had less of a will to live.

With that single focus can also infer some level of denial of where you are at and what you are actually going through. Is that healthy, maybe, maybe not. I wouldn't like to pass on without having had some discussions and plans setup for the future without me. And I want to plan the music for my service, Daz, Barb and I have been chatting about that for years. How can I go without putting in my footy tips. And in case you are asking, I HAVE put in my entire years tips. Each week I go back in and make some amendments, but just in case, FootyTrev tips are in Mike.

My theory is that you can will yourself to death. That you can switch off and just fade away. But the other way is much tougher. I think the right attitude and approach helps the body and mind drive with things like radiation and chemo to try and manage the disease. But can you cure yourself with your mind, make it go away just on pure will? Can you get through the life threatening disease from just will alone? I don't think so.

So my approach is pragmatic and logical. I am positive, I will do anything I can that I think will help me get through this. I want to see my children have relationships, have children, grandchildren.  I want to grow old with my love. But I know that's going to be tough, I am reading the newer studies and looking at the average timeframes. What will put me in those small percentages, the ones that I want to be in? Will WILL get me there? Certainly part of the equation, but then there is luck, genes, and all the medical approaches.

While I am here and am able to draw a breath, I will keep trying to manage this thing and move on. I will do anything I can to get through this, to grow old. I dearly want to be here. But I am equally comfortable talking through some of the things that are a little more confronting, some of the other what ifs and what may be.

But at the moment, I had my most recent scan yesterday and results on Monday. I am pretty confident about this one, hopefully that's not a bad thing. I have little reason to think that it will be anything but good news that the chemo is still working. I have been having a few more pains, but as my onco says, I am 50 now, and so going to have a few aches and pains. But the cancer markers which give an indication of cancer activity are all down.

After my double dose of Cetux last round the whole fortnight has been a challenge, felt crap the whole time. So not doing that again, going back to the weekly single dose rather than the fortnightly double dose.

So looking forward to a weekend that is a little restful and then some footy on Sunday.
Tomorrow is always another day.
Love.
Trev.

Keith's Journey

Recently heard a series of interviews that James O'Loughlin did with Keith and Helen Bunker. Keith had Liver Cancer and was given a short time to live. James interviewed him on radio about his views on life, death, the whole process and how he felt. He then decided to continue to interview him monthly until his death. Some interesting stuff, and some very raw, honest and enlightening stuff. Here is just a snippet of some of the stuff they covered.

"I cried more in the last 9 months than in my previous 49 years".
The emotional ride is really interesting. My support group buddy Robin once told me that even years after his treatment the emotional piece of this can come on at any time, and for no particular reason. Perhaps these life changing events heighten our emotional awareness.

"Knowing that you are going to die; you think about it, plan and prepare physically and emotionally, plan for when I go. Family are as prepared as they can be".
I think this is a real paradox. I feel lucky that I can plan and prepare, but am I really lucky that I will checkout earlier than I really should. Compared to those that get hit by the proverbial bus, never get to say good bye, yep, I am lucky.

"Its not about fairness". 
Its not, its not about who gets it and who doesn't.  I have said before, where are all the dickheads with this disease, all the people I have met with this are good people. No, its not discriminatory, its just what it is.

"I can fight it emotionally, but physically? Fight is really not the appropriate word or language".
So, emotionally I can be strong, resilient, and keep on top of the disease as much as I can. But the physical one is difficult. No winner either way, the chemo is brutal, and really that's part of the fight. You are not really fighting the disease, you are just working on managing it in some way. Keith went on to say that he hasn't given up, but is just pragmatic.

"Im all about honesty, I haven't got time for anything else".
Life is short, that is certainly true, and when given a hurry up there really isn't time for small talk (I say that metaphorically). My support group buddy Phil spoke of early in the piece the culling of friends and family. Why spend time with people that don't value you, or don't make you feel good. There is a bit of a natural culling process in that. I am certainly polite with everyone, but why spend time on things that just don't really matter, I no longer have that time to waste.

"Positiveness, attention, kindness with friends and family has been taken to a new level. Love, attention and kindness, some of the best moments of my life so far. You go through life occasionally telling people you love them, however I get daily emails, they give me enormous joy".
I have said this in previous blogs, how lucky I am to be at a spot with family and friends that I may never have got to, this is certainly the most positive aspect of this whole journey. Add to that I cant wait to see my oncologist and my fabulous medical team each week, they are very special people.

"Spiritually, I am not going to tell anyone that I'm in heaven with angels, I don't believe that, so that's not right. I do however believe in love. I tell my children that I'll be in your hearts, rather than watching over you".
So well put, nailed it.

"Its about what you do with the time left. Don't get bogged down by the things you cant control. Get on with life while you can".
Tomorrow is always another day.

"I cant think of an ideal way of dying".
I do think of dying. How and when its going to happen? How long will I be here? Is it going to hurt? Is it best in bed next to Jane, but how is that for Jane? Is that fair? I am a little concerned that something will happen when no one is home, when I am home alone, when no one else is around. How can you do that anyway, you cant choose, it will happen when it happens.

James had about 6 discussions with Kieth over about 7 months before Keith passed away. He was raw and honest and very articulate in his feelings, and I was very touched by the whole thing. Compelling listening for sure. James then interviewed his wife Helen, some months after Keiths death. She said that often people didn't know what to say. So often they avoided which she found confronting and difficult. Her advice for what to say to someone that has lost a loved one.

• Be yourself.
• Tell your stories about them, and you, celebrate their life.
• Tell them how you feel.
• Be warm.
• Be normal.
• Life is short, make the most of everything
• Carry on.

That's an instruction book right there.

So rock 'n roll. That's the way we move on with life. And a great part of my journey is to really listen to things like these interviews from Keith and Helen, and really learn from them. Not just have it on as background, but to really listen and take in, and hopefully use. And my dream and hope is that by sharing some of this you will really read it, and if you are in the situation, that you have some small amount more understanding.

I love doing this stuff, listening, writing, pushing it out there, and hope that I will be doing it for a long while, as tomorrow is always another day.
Love.
Trev.

My Anniversiary

What a day, what a week, what a year.

Today I have spent a great deal of the day coming back to thoughts about Phil Walsh. I am sure you have all caught the news somewhere that the Adelaide Crows head coach lost his life last night with his son charged with his stabbing murder. Its horrible whether the people involved are in public life of not, its just when they are in public life it is so visible and pervasive.

Love some of the words and phrases used to describe Walshy. Authentic, credible, honest, real, straight-shooter. Love the way he has been described, and hope he would have as well. Really feel for his close family and friends, particularly hie wife, daughter, and of course his son. Life has changed forever.

I think a lot about mortality these days, probably too much. When things like Walshys death bring up thoughts about how lucky, I, and all of us, are. I have the opportunity to hug my wife and kids more, to chat, to discuss, to tell them I love them every day, to plan for the future with or without me, to prepare all of us for what is likely to happen over the coming years. Walshy didn't  his family has to live with that as well as everything that goes along with that, awful stuff. I am so lucky.

So today is my 1 year anniversary since diagnosis. A year ago today I got the news of the malignancy of the cancer in the bowel. Over the following few days we then found out the extent of the growth to the liver, lung and abdo. Today a year ago was my first day of not heading to work each morning, the beginning of the new life. So began this journey.

The challenges and negatives are pretty clear. There have been times when things have been so dark, and hope seemed so far away. I remember a conversation with BP telling him I felt like I was going out the back door, and others similar. But there has been so many positives, so many things that I may never have got to if this hadn't happened. I wont list everything out, will be here for days and I have written about many in previous blogs. But the strength of love that I feel for family and close friends is everlasting, and is something that will keep me going forever.

One of the things that has been so surprising is re-engaging with some great old mates. Spent a good couple of hours with Youngy, Willo and Carolyn, old Primary school mates (when I say old, I hope you guys know I mean that we are "old mates", and not "old" mates). Haven't seen these guys for over 30 years, and it was pretty amazing how comfy it felt, how good it was just chatting openly about old and new times. Was lovely. Great job Rod for getting us together, thanks.

Was also great to catch up with an old footy mate, Peter Mac, today. Amazing who you run into when crossing the road! And great pre-dentist brekky with great mate Rob Thommo earlier this week, could talk for hours Rob and love the support and wishes from you and your family over the time.

I had a double dose of one of the chemo drugs on Monday, the idea being that if I have a double dose this week then I don't have to go in next Monday for another. So wanted to give it a go. Been a rough few days. Been lots of bouts of nausea and massive fatigue interspersed with hours of clarity and effectiveness. But certainly when I get out of chatting, I am more and more tired once I come down from the natural high of chatting and engaging. I expect I will have a better week next week without any chemo, but got to decide whether the additional feel crap of this week is worth the fortnight double dose, or whether better off with the weekly single dose. Will see at the end of next week.

I have my next CT to look at how the chemo is working next Thursday  then the results the following Monday. I am very confident, all things point to the idea that the weed killer is continuing to shrink the bastards. I certainly expect some more great news from the onco on Monday week, I am sure Josie will come through.

The week has also been hard coming to terms with my ex-employers decision to terminate my employment on medical grounds, but each day I am becoming a little more accepting of it. Whatever happens, life goes on. We deal with it, and move on to the next stage. That doesn't mean I don’t have bad days or doubts. It just means that I accept the hand I was dealt. I don’t know what the next chapter will bring, but I’ll do my best to deal with it. And you all know that this means that tomorrow is always another day.

On my first anniversary of this journey I would also like to thank all of you that have read my ravings, and supported me and my family. I look forward to continuing to share what is an awesome time of life with all of you.

Love.
Trev.