Been watching all the footy shows this week, Brownlow last night, lapping up all the analysis. Just getting ready for the Melbourne trip and talking footy for the whole weekend. Just loving it. Jane and I leave on Thursday and back on Sunday. Lots of stuff on, hopefully will sneak in some red and white for the Swans to the MCG on Saturday, will see.
Its great to have the Melbourne trip on, such a great distraction and part of getting on with some normality and some fun stuff. But its never far from the surface and never far from reminding me about where we are at. My progress scan is due this week, so am having a CT early tomorrow, but even though the results will be available pretty quickly I have told my onco that I don't want to hear about them until my next appointment next Tuesday. Good or bad, let me enjoy the normality of the weekend and try not to think about the results. Usually I don't want to wait, I want the results as soon as I can, but maybe I am getting used to the waiting game, or maybe just a little more ambivalent, not sure.
Had my small chemo on Monday, just a dose of Cetuximab and various steroids, been an exhaustive couple of days but feeling pretty good, ready for the weekend. Stoma has been playing up a little, so just have to watch what I eat a little more and drink plenty of water, will keep working on it.
Was great to catchup with Mike and Trav, good to spend some time with Luke at MacQuarie hospital seeing what he is going through. Great strength and fantastic attitude, some really brutal stuff and just moving through it like a knife through butter. That is great for me to see, wonderful, helps me to see how I should behave through these travels, hope I am holding myself somewhere close to what I see in Luke, awesome buddy.
Went out for an impromptu dinner with Jane and E to "Abbys Beer & Burgers" down at local St Ives. Sensational burger, and had my first beer in around 15 months. Tasted pretty good. Not sure I will be turning it on too much, but was good to have a sneaky ale.
So just in case you want to know, my tip is ABH (Anyone But Hawthorn). Weagles by 2 goals, Priddis for the Norm Smith. Tomorrow is always another day, and my oath am I going to enjoy the next few.
Love.
Trev.
Tuesday 29 September 2015
Wednesday 23 September 2015
Sartorial Eloquence - Cancer Council Relay for Life
My loving in-laws have dressed in my favourite attire, the Sartorially Eloquent Hawaiian shirts and participated in the Cancer Council Relay for life.
Rodney, Cait, Maja, Sarah, Grandma Jean, Niamh, Sean and Dale, all looking very swish. Thanks so much guys for suiting up and treading the boards, raising the cash, and for your thoughts along the way. It is still open if any of you out there feel the inkling to donate. Each donation, large or small, helps to fund Cancer Councils research, prevention, information and support services.
Rodney, Cait, Maja, Sarah, Grandma Jean, Niamh, Sean and Dale, all looking very swish. Thanks so much guys for suiting up and treading the boards, raising the cash, and for your thoughts along the way. It is still open if any of you out there feel the inkling to donate. Each donation, large or small, helps to fund Cancer Councils research, prevention, information and support services.
Special thanks to Grandma and Cait who are also fighting their own personal demons that this disease brings.
Had a pretty good week this week with coping with the weed killer pretty well, nausea is somewhat lighter with the new anti-nausea drugs, the fatigue a little better too. Great to catch up with old mate Marc on the weekend, it astounds me each time I meet a mate that I haven't seen for a while at how easy and comfortable it is, friendship certainly endures.
Was also great to catchup with Rob McG, talkin' footy, enjoy the hols with the family bud, you've certainly earned it. Wishing Rob up the road another happy 21st birthday how many is that young fella, great to see you and Cheryl and Amy as usual. And a lovely lunch to farewell Ben with my best mates the Scotts. Not that we enjoyed farewelling Ben, but hope he has a great experience in Noosa and keep a spare lounge for me for sometime next year perhaps.
So excited about next week, even though the Swans wont be there, Jane and I will have some red and white to represent them at the AFL GF. Be great to catch up with our good mates the Dickys and the Whites over the time.
So keep on trucking, as tomorrow is always another day.
Love.
Trev.
Was also great to catchup with Rob McG, talkin' footy, enjoy the hols with the family bud, you've certainly earned it. Wishing Rob up the road another happy 21st birthday how many is that young fella, great to see you and Cheryl and Amy as usual. And a lovely lunch to farewell Ben with my best mates the Scotts. Not that we enjoyed farewelling Ben, but hope he has a great experience in Noosa and keep a spare lounge for me for sometime next year perhaps.
So excited about next week, even though the Swans wont be there, Jane and I will have some red and white to represent them at the AFL GF. Be great to catch up with our good mates the Dickys and the Whites over the time.
So keep on trucking, as tomorrow is always another day.
Love.
Trev.
 |
| Marcy Mueller and an awesome Sunday Brekky. |
Wednesday 16 September 2015
Coping with the limbo time - Waiting for scan results
I've previously referred to a life of limbo. We seem to live this life of waiting, waiting to see if the treatment is working, waiting for the next doc appointment, and the hard one, waiting for results. This life of limbo it often really hard to deal with, you are hoping for good results, but you really don't know. You want that call from the doc, but the early call from the doc may mean a bad outcome. You never want the doctors office to call you the day of your scan and ask you to be in his office first thing tomorrow morning, that's never good news.
So now heading into my next scan in a few weeks, I was thinking again about how I will handle it, what will I do to help me through it. I have read it referred to as "SCANXIETY", anxiety for scan results, good one. It shouldn't be underestimated the impact it can have on you. I read recently someones description of how they felt about waiting for scans.
Wow, I found that pretty close to what I have felt before. Always hard to sleep, to stop the anxious thoughts, and no, you never get used to it. So what are some of the things that I think I can do, and maybe others can consider.
What have you done before?
Are there ways that you have handled stressful situations in your work and home life before that have worked well? What are they? Can you use them in this situation?
Relax.
Are there techniques that you can help yourself to relax? Breathing exercises, mediation, reading, cooking, going for a walk? Often easier said than done right, but what do you normally do to relax and plan that into the few days.
Focus on the Positives.
Yes you will be thinking about it all, but the positive is no matter what you do now it is not going to change the result of the scan, what will be will be, so what is next in the various scenarios, what can you do to move on no matter what the result?
Talk about it.
Talk to others about it, partners, online blogs, put your thoughts down on paper. Problem shared perhaps? Make it clear when you talk about it that you are not looking for advice, you are just looking to bleed a bit, need a bit of empathy.
Accept that you are going to be anxious.
The worry is normal, it is something that will happen to everyone in this situation, and the point is, IT IS OK. Accept that you are OK to be concerned, but try not to spend too much time inside that emotion, try and bounce back with spending time with family and friends, laughing, chatting, just shooting the breeze. Don't let the worry be the single emotion that overtakes all others, that's not healthy for mind or body.
So the last couple of days have been pretty good, the fatigue this week seems to be improved, certainly better than the weekend. Great to catch up with JB and Cooky for brekky yesterday and see Mum and Dad. So with some preparation for the scan in a few weeks I will try and cope with the life in limbo and Scanxiety. School hols next week, will be good to have the boy home for a few days, looking forward to tomorrow as tomorrow is always another day.
Love.
Trev.
So now heading into my next scan in a few weeks, I was thinking again about how I will handle it, what will I do to help me through it. I have read it referred to as "SCANXIETY", anxiety for scan results, good one. It shouldn't be underestimated the impact it can have on you. I read recently someones description of how they felt about waiting for scans.
“It’s like every six months, someone holds a gun to your head, and they slowly squeeze the trigger. You can hear the springs in the gun compressing, you feel the muzzle shake a little as their muscles quiver, and you tense up, anticipating the explosion. Adrenaline pours through your body. You try to keep from shaking, from crying, because the gun exploded twice before, and you don’t want to go through that again.This time, there’s a loud “click” of the hammer slamming down on an empty chamber. Just that sound explodes in your ears. Every muscle in your body jolts tight as the sound echoes – then rings away.No bullet this time.Good.But it takes awhile to recover.And no… you don’t ever get used to it.
Wow, I found that pretty close to what I have felt before. Always hard to sleep, to stop the anxious thoughts, and no, you never get used to it. So what are some of the things that I think I can do, and maybe others can consider.
What have you done before?
Are there ways that you have handled stressful situations in your work and home life before that have worked well? What are they? Can you use them in this situation?
Relax.
Are there techniques that you can help yourself to relax? Breathing exercises, mediation, reading, cooking, going for a walk? Often easier said than done right, but what do you normally do to relax and plan that into the few days.
Focus on the Positives.
Yes you will be thinking about it all, but the positive is no matter what you do now it is not going to change the result of the scan, what will be will be, so what is next in the various scenarios, what can you do to move on no matter what the result?
Talk about it.
Talk to others about it, partners, online blogs, put your thoughts down on paper. Problem shared perhaps? Make it clear when you talk about it that you are not looking for advice, you are just looking to bleed a bit, need a bit of empathy.
Accept that you are going to be anxious.
The worry is normal, it is something that will happen to everyone in this situation, and the point is, IT IS OK. Accept that you are OK to be concerned, but try not to spend too much time inside that emotion, try and bounce back with spending time with family and friends, laughing, chatting, just shooting the breeze. Don't let the worry be the single emotion that overtakes all others, that's not healthy for mind or body.
So the last couple of days have been pretty good, the fatigue this week seems to be improved, certainly better than the weekend. Great to catch up with JB and Cooky for brekky yesterday and see Mum and Dad. So with some preparation for the scan in a few weeks I will try and cope with the life in limbo and Scanxiety. School hols next week, will be good to have the boy home for a few days, looking forward to tomorrow as tomorrow is always another day.
Love.
Trev.
 |
| Onya JB. |
Monday 14 September 2015
The Mental Rollercoaster
I love this time of year.
For the mental challenges that my disease and treatment bring, these are all great distractions. I don't know how much the mental side plays in the whole scheme of things, but for well-being in general I think its significant. To have the distractions, and all the conversations around them, it enables me to focus in other positive directions.
But its never far from the surface, its never far from conversation, and I think that's OK. Its not about trying to forget about it all, that would be silly, and something that would be hard to do. I have never been a bury-the-head-in-the-sand sort of guy anyway. Its about providing the mind a chance to get away from the concerns and worries of the situation to give the mental piece time to rest and perhaps even to recuperate and repair. I still need to think about the practicalities and continue to ponder the various scenarios, be ready for the next onco appointment with my current crop of questions, but I also need to be able to separate from it at times.
Part of the separation I feel is that although to a certain extent the disease does take over, it cannot over the long term define who I am. When you refer to me now or anytime, I hope that the disease is just 1 of the subsets that make up who I am. A major one for sure, I understand and accept that, but I continue to work hard to make it not the defining one in my time here. What my hope is that when people do talk about me, that they talk about other things first, bad or good I am not sure, but that the disease is a secondary thing. Does this make sense?
So after having my smaller weed killer yesterday I am feeling pretty good today. I am a little surprised that I am feeling this way after such a foul weekend, but I am happy to take it while it lasts. Might have been the pep talk from JG on the way home yesterday, footy, cricket, finals, you know the drill. Thanks for the lift by the way JG, always there for me bud. So might get out soon and take the dog for a walk in the beautiful weather, and try and relax for the day to keep this feeling going for a while.
Happy that I can smell the roses, had some hayfever sneezing this morning so might restrict the rose sniffing a bit, but good that have had a switch and ready for whats next, as tomorrow is always another day.
Love.
Trev.
- Its between seasons, the cold seems to start moving away and the sun visits more often. Do I wear shorts today, or still don the jeano's? Sorry for that picture, my near hairless legs out in the open, some people pay lots of cash to have smooth legs like mine.
- Its the end of the kids footy and netball seasons, we have finals, and wrap-up with great discussions about the year, and thoughts of next year.
- Its AFL Finals Footy, Swans are always there, and again we are in it, but the games every weekend are such high standard, its great to watch the games and all the analysis.
For the mental challenges that my disease and treatment bring, these are all great distractions. I don't know how much the mental side plays in the whole scheme of things, but for well-being in general I think its significant. To have the distractions, and all the conversations around them, it enables me to focus in other positive directions.
But its never far from the surface, its never far from conversation, and I think that's OK. Its not about trying to forget about it all, that would be silly, and something that would be hard to do. I have never been a bury-the-head-in-the-sand sort of guy anyway. Its about providing the mind a chance to get away from the concerns and worries of the situation to give the mental piece time to rest and perhaps even to recuperate and repair. I still need to think about the practicalities and continue to ponder the various scenarios, be ready for the next onco appointment with my current crop of questions, but I also need to be able to separate from it at times.
Part of the separation I feel is that although to a certain extent the disease does take over, it cannot over the long term define who I am. When you refer to me now or anytime, I hope that the disease is just 1 of the subsets that make up who I am. A major one for sure, I understand and accept that, but I continue to work hard to make it not the defining one in my time here. What my hope is that when people do talk about me, that they talk about other things first, bad or good I am not sure, but that the disease is a secondary thing. Does this make sense?
So after having my smaller weed killer yesterday I am feeling pretty good today. I am a little surprised that I am feeling this way after such a foul weekend, but I am happy to take it while it lasts. Might have been the pep talk from JG on the way home yesterday, footy, cricket, finals, you know the drill. Thanks for the lift by the way JG, always there for me bud. So might get out soon and take the dog for a walk in the beautiful weather, and try and relax for the day to keep this feeling going for a while.
Happy that I can smell the roses, had some hayfever sneezing this morning so might restrict the rose sniffing a bit, but good that have had a switch and ready for whats next, as tomorrow is always another day.
Love.
Trev.
Sunday 13 September 2015
I'm not tired, really I'm not
The cancer related fatigue is one that I have been trying to explain for some time, but still don't reckon I have explained it well. Over the last month or so I have been really fatigued, one of the reasons they say may be the accumulated effect of the chemo. But how to explain what that means.
Fatigue in usually from activity, overuse perhaps. If you are tired, usually a good nights sleep will at least help relieve it. In the case of the cancer related fatigue, a good nights sleep doesn't cut it. Its a real lack of energy, whole body tiredness is how I have heard it described. Its acute, its chronic, its exhaustion, and it doesn't really go away. It may be from the disease, or the treatment, it can come on quickly and be extremely debilitating.
For some reason this weekend has been pretty bad, spent most of the last couple of days on the couch. Sometimes I sleep, sometimes I don't, but its hard to function normally, to get up and get a drink. In the last month i have found I can help plan for it. I don't plan anything on the chemo day and the few days following, and then for later in the week i just make sure that I only plan to do 1 thing per day, 1 catchup, and can usually get myself up for that. After that, it tends to kick in and I am back on the lounge or in bed. But still working out how to manage that in a normal week, but this weekend has hit a little harder. Maybe I overdid it this week, or maybe its something else, I don't know. Got to get this right and pace it.
However, got to Cassie's netball Grand Final on Saturday, and Ethan's AFL presentation day today, in both cases, planned for it and got through it pretty well. We didn't win the GF, but Ethan received a runner up B&F award, congrats to both.
Loved catching up with Deb, Dicky, Healz, Fincha, and the St Ives AFL Old Boys. (Yep, probably over did it this week by the sound of it). Heading back in for chemo tomorrow, have an early appointment so better try and get some sleep eh. Try and wake up and enjoy the day chatting with the nurses, as tomorrow is always another day.
Love.
Trev.
Fatigue in usually from activity, overuse perhaps. If you are tired, usually a good nights sleep will at least help relieve it. In the case of the cancer related fatigue, a good nights sleep doesn't cut it. Its a real lack of energy, whole body tiredness is how I have heard it described. Its acute, its chronic, its exhaustion, and it doesn't really go away. It may be from the disease, or the treatment, it can come on quickly and be extremely debilitating.
For some reason this weekend has been pretty bad, spent most of the last couple of days on the couch. Sometimes I sleep, sometimes I don't, but its hard to function normally, to get up and get a drink. In the last month i have found I can help plan for it. I don't plan anything on the chemo day and the few days following, and then for later in the week i just make sure that I only plan to do 1 thing per day, 1 catchup, and can usually get myself up for that. After that, it tends to kick in and I am back on the lounge or in bed. But still working out how to manage that in a normal week, but this weekend has hit a little harder. Maybe I overdid it this week, or maybe its something else, I don't know. Got to get this right and pace it.
However, got to Cassie's netball Grand Final on Saturday, and Ethan's AFL presentation day today, in both cases, planned for it and got through it pretty well. We didn't win the GF, but Ethan received a runner up B&F award, congrats to both.
Loved catching up with Deb, Dicky, Healz, Fincha, and the St Ives AFL Old Boys. (Yep, probably over did it this week by the sound of it). Heading back in for chemo tomorrow, have an early appointment so better try and get some sleep eh. Try and wake up and enjoy the day chatting with the nurses, as tomorrow is always another day.
Love.
Trev.
 |
| Healz had left, should I superimpose him on? |
Monday 7 September 2015
Well that's a surprise
So what next? At the risk of you looking closely when you next see me and thinking or saying WTF...
My eyebrows have been thinning slowly, but just last night, interestingly, they pretty much fell out. Wow, now that was a surprise, but you wouldn't know it, as how do I raise my eyebrows in surprise, or shock? Or that one eyebrow raise of disapproval? I know the kids will be happy at that one. So BAB, those cracks about my oversupply of body hair are wearing a bit thin. Get it, wearing a bit thin, thinning hair? Jokes aren't as good when you feel you have to explain them, are they.
So part of the story is at yesterday's big chemo we are trying a couple of new nausea drugs, as well as another steroid to try and combat these side effects and get me back on track. The nausea seems to be better, which is great. The additional steroid still tries to trick me into not being able to sleep, tired, but can't sleep, and no eyebrows. So wonder if there is a grow-an-eyebrow drug I can take? Advanced hair, yeh, yeh. Will keep trying to try to get over this hump and improve quality of life.
So it's been a terrific couple of weeks on a number of fronts. A great Father's Day on Sunday. Always good to mark the milestones, had a great brekky, my favourite meal of the day and the kids put some great thought into pressies as they always do. They reckon I'm hard to buy for, I don't believe that, and they always do so well I can't be that difficult. Wearing my new Swans hoody this week. Great to catch up with Al, Sarah, Rog and Jillian last week, and Luke, Kate, Ollie, Ella and Ava on Saturday, wishing you well for this week and what the future holds.
I wrote in a previous post, a couple of weeks back I was awarded life membership of my cherished ST Ives AFL club, so proud. Then a week or so ago I was awarded AFL Volunteer of the year for the Sydney Harbour Region. Then I got a call last week from head of NSW AFL, Sam Graham. First thing I thought was what had our club done wrong that he was calling about. However he delivered the news that I was awarded the NSW AFL Volunteer of the year award, and for that I was on an all expenses trip to the AFL Grand Final, flights, accom, brekky at. Government House, and also being part of and walking in the GF parade. Wow.
I then got onto tikitec and tried to get tickets to the GF eve Marngrook footy show. I love that show, but all sold out. So I emailed and the awesome guys at NITV and Marngrook have been terrific, Jane and I will now be at the show as a guest of the network, would not let me pay for the tickets. Wow.
Kids are jealous, but will be a great weekend away for my lovely wife and I, and hope to catchup with a few Melbourne mates as well.
So putting up with the nausea and fatigue, watching some crappy movies, with the knowledge that tomorrow is always another day.
Love.
Trev.
My eyebrows have been thinning slowly, but just last night, interestingly, they pretty much fell out. Wow, now that was a surprise, but you wouldn't know it, as how do I raise my eyebrows in surprise, or shock? Or that one eyebrow raise of disapproval? I know the kids will be happy at that one. So BAB, those cracks about my oversupply of body hair are wearing a bit thin. Get it, wearing a bit thin, thinning hair? Jokes aren't as good when you feel you have to explain them, are they.
So part of the story is at yesterday's big chemo we are trying a couple of new nausea drugs, as well as another steroid to try and combat these side effects and get me back on track. The nausea seems to be better, which is great. The additional steroid still tries to trick me into not being able to sleep, tired, but can't sleep, and no eyebrows. So wonder if there is a grow-an-eyebrow drug I can take? Advanced hair, yeh, yeh. Will keep trying to try to get over this hump and improve quality of life.
So it's been a terrific couple of weeks on a number of fronts. A great Father's Day on Sunday. Always good to mark the milestones, had a great brekky, my favourite meal of the day and the kids put some great thought into pressies as they always do. They reckon I'm hard to buy for, I don't believe that, and they always do so well I can't be that difficult. Wearing my new Swans hoody this week. Great to catch up with Al, Sarah, Rog and Jillian last week, and Luke, Kate, Ollie, Ella and Ava on Saturday, wishing you well for this week and what the future holds.
I wrote in a previous post, a couple of weeks back I was awarded life membership of my cherished ST Ives AFL club, so proud. Then a week or so ago I was awarded AFL Volunteer of the year for the Sydney Harbour Region. Then I got a call last week from head of NSW AFL, Sam Graham. First thing I thought was what had our club done wrong that he was calling about. However he delivered the news that I was awarded the NSW AFL Volunteer of the year award, and for that I was on an all expenses trip to the AFL Grand Final, flights, accom, brekky at. Government House, and also being part of and walking in the GF parade. Wow.
I then got onto tikitec and tried to get tickets to the GF eve Marngrook footy show. I love that show, but all sold out. So I emailed and the awesome guys at NITV and Marngrook have been terrific, Jane and I will now be at the show as a guest of the network, would not let me pay for the tickets. Wow.
Kids are jealous, but will be a great weekend away for my lovely wife and I, and hope to catchup with a few Melbourne mates as well.
So putting up with the nausea and fatigue, watching some crappy movies, with the knowledge that tomorrow is always another day.
Love.
Trev.
 |
| Talking footy... and stuff. Onya Al. |
Wednesday 2 September 2015
Its all Relative
We all complain at times, about life, health, work, home, relationships. The great Aussie ask of "How ya going?", doesn't always need an answer, but have had many people say to me "well, I have nothing to complain about compared to what you are going through". Its all relative right?
But we all have our emotional challenges about various things, and its certainly not a competition. Your challenges and problems are as important as mine, to you, they are much more important. But I'm happy if when you talk about your challenges if my problems give you some perspective, which may sometimes give you some view that some challenges are not as bad as we sometimes think. Yep, it is all relative, but relative to your life, how important is that problem you are facing?
But in my context, I love to talk through stuff with you. I hope you don't feel guilty or feel you have to say "...compared to your problems...". You don't, you never did before, so in that context nothing has changed.
A great mate was diagnosed with cancer of the throat last week, my thoughts and wishes are constantly with you, and will help in any way I can, whether to listen, chat, let me know what else I can do. I'll drop the moogoo and pawpaw over soon. Its all relative right, and I am feeling for you, these early days for you and your family will be challenging, hoping you can just run with it for now, 1 day at a time.
A great mate was diagnosed with cancer of the throat last week, my thoughts and wishes are constantly with you, and will help in any way I can, whether to listen, chat, let me know what else I can do. I'll drop the moogoo and pawpaw over soon. Its all relative right, and I am feeling for you, these early days for you and your family will be challenging, hoping you can just run with it for now, 1 day at a time.
So been pushing through this week and feeling pretty good. Daily I'm still very fatigued, but trying to manage the days so I can get out later each week for a coffee and something adult contact. Seems to be working ok. As in previous weeks having some more time feeling a little sorry for myself, but working on bouncing back to keep on top of it all.
Was great to catch up with Jo last week and compare war stories. Wonderful to hear how well she is coping with her challenges, one very strong woman. Ethan's footy on the weekend saw them head out of the finals, and injury meant he just watched as his Swans mates played on the SCG. But hopefully he will be back in a few weeks over the lower back injury. Cass had a netball win on Saturday by a goal, awesome game, bring on the GF. Also great to catch up with Hoody yesterday, love hearing about all my EMC mates.
Recently I submitted an article to the National Ostomy magazine (hand up, who knows what an Ostomy is? Time to consult Dr Google perhaps?) , and they published it in the letters section. They sooped it up a bit so was really happy with how it came out, so I have attached it here. They also asked me to do another one in a similar format, pretty pleased with that too. Loving this writing gig, fun, and pretty good as a strategy to box up some thoughts and ideas.
So its a beautiful day outside today, and I'm feeling pretty good. So will spend sometime with good friends and family and then tomorrow is always another day.
Love.
Trev.
Recently I submitted an article to the National Ostomy magazine (hand up, who knows what an Ostomy is? Time to consult Dr Google perhaps?) , and they published it in the letters section. They sooped it up a bit so was really happy with how it came out, so I have attached it here. They also asked me to do another one in a similar format, pretty pleased with that too. Loving this writing gig, fun, and pretty good as a strategy to box up some thoughts and ideas.
So its a beautiful day outside today, and I'm feeling pretty good. So will spend sometime with good friends and family and then tomorrow is always another day.
Love.
Trev.
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