I’m in remission, Life List and moving forward


lava lavaSo I’ve just been told that I am in remission:) My first question was, what does that mean? I always thought it meant something like being cancer free, but my oncologist said that once you have cancer, you are never cancer free.

So what does it mean for me? For now, no more drugs and tests for 3 months (that’s the second lot of 3 months now) and that in itself is a big relief. I’m still getting my head around it.

I don’t want to write about my cancer as such other than a brief update and perhaps to help others on a similar journey. My fatigue is way better than it was and I am able to stay awake longer than I was, almost normal, although I still nod off if I am in an easy chair, but I am no longer fighting to stay awake at 6:30 PM, (every night) or playing Candy Crush to force myself to stay awake.

I do still tire easily, especially on long work days or trips, but it is getting easier.

RescueI am still not producing cortisol, which is really interesting when you are on a rollercoaster that suddenly races off at a great rate of knots and everyone around you screaming and you’re thinking “hmm this is entertaining”. Or lying upside down in an ocean kayak, in a current thinking “This is interesting, I suppose I should pull the ripcord on my sprayskirt and get out so I can breath”. But I am aware of where I am at and much more cautious when it comes to driving if I am tired, or not looking at my mobile while I walk on the footpath and especially crossing the street with so many red light runners (3 just yesterday as I was going to buy some sushi for lunch).

I meditate every night using the Headspace app, which has been very helpful, especially with sleep and the way I respond to situations. I’ve been doing a lot of work on my values and what is important to me, which leads me to my Life List.

I am listening to The Hidden Why podcast, by Leigh Martinuzzi frequently (amongst many others), which I recommend, he’s pretty good for an Aussie (sorry mate) and a prolific poster and traveller on the topic of Why, which is pretty much the key to everything, right?

Recently he interviewed Danny Dover who wrote The Minimalist Mindset, which I am currently reading. I got it for a minimalist cost on Amazon for Kindle, but I’m tempted to buy a hardcopy as well, because it is the sort of book you want to read with a real highlighter and Post-It Flags, rather than virtual ones, because they are easier to use. In fact I might buy a few copies to give away to friends.

national steelSo I’ve had a Bucket List which I revisited since I was told those three words ‘YOU HAVE CANCER’ and some of the things I wrote about were things I wanted to have, like a National resonator steel guitar, which really doesn’t matter to me, and a Corvette, which does.car

But what Danny did to help himself out of severe depression was create a Life List of 150 things he wanted to complete within a 10 year period and they are values focused and I was inspired to do that. So I officially started that list today and am part way through reading his book.

I’ll blog about the Life List separately because it will be part of my process and I hope it will help other people to focus on what matters to you rather than ‘stuff’ to have or own. I’m also going to work on it with my wife, although there will be things that matter to us and things that matter just to me, so there will be overlap.

It’s a shame that it takes something like having cancer to wake us up to put more effort into life, not that I haven’t put a lot of effort in, but there are many things I could have done better, and many different paths I may have chosen. The important thing is my focus on a future based on my values and I am very clear on what they are. So today on 8 August 2017, I am starting my 150 item Life List of things I want to complete by 7 August 2027.

I have started item 1 and if you want to know what it is, watch this space. It’s pretty cool IMHO.

I got Chastised for Owning a V8 Last Week


I felt like I was being made out to be a bad person and it shocked me. I’ve always considered myself a green person. I have planted tens of thousands of trees, lobbied for feed-in tariffs to make it attractive and economical to get the masses to install solar power. I’ve encouraged ride-share systems and spend a lot of my working time encouraging people to use public transport and to reduce the impact of congestion. I point out to people when their car or truck is blowing soot from the exhaust pipe and if I pick up rubbish that others have thoughtlessly discarded.

Since I was little I always loved Corvettes. As a boy i would watch them on TV and see the odd one in real life. As an adult I had a business associate who owned one while I just had a replica model.

20160611_175607 (2).jpgThe colleague who castigated me used to work for a car manufacturer and has a passion for motor vehicles and motor sport and maybe he was just envious of me that I have a sports car, but it made me feel bad. It shook me, perhaps because the car is an indulgence.

I didn’t bother telling him that I have cancer and that it made me decide to do a few things for myself and my family that were on my bucket list, things that like most of the people I know, I never expected to achieve. Anyway, now when I drive my 350 Chevrolet, people give me the thumbs up, kids stop and look at it as  drive past as I did so many times when I was little and I see big grins light up on their faces, just like I did. People compliment it and I feel like they feel happy for me in gas stations. They don’t know my circumstances and might think I’m rich. I’m not. The only new vehicle I have owned in my entire life was a no gear pushbike.

I have my dream car and I spend as much time cleaning it as driving it, which I find therapeutic (it helps me take my mind off my next lot of tests), while listening to business coaching, self improvement and music podcasts. It’s in great condition, doesn’t blow smoke (and neither do I), I never deliberately speed (in fact I am helping to test a green driving app) and  so the engine is never working hard, it is in fine tune so there is very little pollution, in fact I think it drives much cleaner on high octane petrol than the average car let alone the diesel soot smeared black smoke spewing trucks I see delivering frozen food to retailers.

I have spent half of my life working in voluntary unpaid positions after work, from boards and committees including as a Civil Defence Rescue Team Leader, Chair and committee member of boards including a music centre that has taught thousands of children to play music on instruments they couldn’t afford to own, volunteered in a food centre providing vegetables at farm cost to people who couldn’t afford to pay retail, fund a guide dog, support charities and worked hard all my life.

I indulge myself a little when it comes to my guitars and continuing to lean music and have done some travel (most of it on business with very little time for myself) and I consider myself to be a good citizen. Don’t get me wrong, I’m far from perfect and have room to be a better person, but I do care about my community and my environment.

But I do have cancer and I do have a bucket list. I thought I’d wait until I retired before I went and had a but more fun and I’ve recently been pointed out that I am no longer insurable for health and life. Obviously they consider I have a long life span ahead! I haven’t given up on that myself.

I do my best not to judge other people and I’d like to suggest that people who are quick to judge or try to make me feel bad for finally owning my (second hand) dream car should have a close look in the mirror. I hope they never find themselves in a similar situation to me.

 

 

 

Dealing with Cancer fatigue


It’s a little after 6AM and I’ve been awake for a couple of hours and decided to get up and do something constructive. My mind has been going ten to the dozen with ideas for my blogs, how to deal with all the exciting things happening at work, cancer and music.

This could become a book, which may help if you or someone you know is dealing with cancer, or it may not. At the very least it will help me as a journal and that’s fine.

Today is about emotions, not just for myself but the people that surround me and about coping mechanisms

The irony is that of all the people I know with cancer, my condition and prognosis is probably among the best. I’m about 6 weeks away from getting my next PSA tests, but the last one was the first one that went down since my 8 week’s of radiation, which is great.

Meanwhile 2 good friends have recently had mastectomies, one last week, she is still in hospital, another is making regular trips to hospital as the cancer has metastized, a colleague who is helping me by talking to me about her situation, which is terminal and another good friend whose cancer has now gone to his brain and is possibly inoperable.. None of these are people I met through cancer, they are just close people in my life.

My boss asked me a week ago how I was doing. I told her I felt I was improving, especially my fatigue and sleep, but that was speaking too soon, because as soon as I had told her that, it went backwards again.

Here’s a classic scenario for me, almost every day. I go to work and try to pace myself, with a goal to walk for half an hour at lunchtime (sometimes I achieve that, maybe once a week, because I suffer death by meeting). I love my work and when I’m busy I don’t think about the cancer at all. The goal is to leave around 3:30 and perhaps catch up on a bit of work reading when I get home or just rest. I then mostly leave between 4 and 5, which is still much earlier than I used to. If I don’t pace myself I really suffer to the point where it is an effort to raise my weary legs to walk from the car to the house, or do much of anything, where previously I used to go home and get on the cross trainer or go for a walk and play guitar. If I make it much later, I have to really think about whether I should be driving, make sure I have a coffee, windows wide open and focus. Don’t worry, I had one tiny moment once and have been ultra cautious ever since. I will not drive if I am too fatigued.

I come home, have dinner and fall asleep about 7PM. Once a couple of weeks ago I fell asleep eating a piece of steak, fast asleep, although my wife maintains I was chewing in my sleep, I think that was a moment when I woke up. I feel ripped off because that is my time and my time with my wife. She tells me to go to bed, but I feel too annoyed about losing my evening, the part of my lifestyle that I work for. By the 3rd time i grudgingly go to bed somewhere between 8 and 9PM feeling really bad for leaving my wife on her own every night.

Despite falling asleep in the lounge, I then need something to help me get to sleep when I get to bed, with which I am gone within 15-30 minutes. During the week I will sleep around 10-11 hours and wake up just as tired as when I went to bed.

On other nights, mostly weekends, I will wake up at 2 or 3 and get up and read for an hour and go back to bed, but I will still usually get 8-10 hours sleep.A couple of years ago I was fine with 6 hours sleep.

The fatigue is hard to describe. It is both physical and mental. At night it is a feeling of being dead tired and I have no control over it. I sit down, we watch TV or read my Kindle and within minutes I’m in a deep sleep. But it’s also physical. I now know what bone weary means, because that’s what’s its like. My whole body is exhausted. Lifting a limb is hard work. I go to play guitar and pick it up, put it down, it’s too hard and  LOVE my guitars.

I’ve been working on my attitude, but please don’t tell me to think positive, I think all cancer sufferers hate hearing that. It’s not helpful. I’ve been focusing, as in my previous blogs about things to look forward to. One of those was my new car. With the help from a malignant cancer clause in one of my insurance policies (which also continues to help with costs not covered by my heath insurance), I was able to by a  C5 targa top Corvette. Something I wanted all my life, but never thought I would ever own. The closest I thought I would get was sitting in one with my daughter at Disney World in Orlando. It is interesting how many people buy themselves a new car when they have cancer.

car

Ironically I wrote that goal in my bucket list app in 2011, not for a moment thinking it would come true and the due date for the goal was about 80 days from when it happened. I am a strong believer in goal setting, although I don’t do enough of it. I am starting to again though:)

But goals and things I look forward to may be as simple as putting new strings on my granddaughter’s guitar and giving her lessons, or a weekend away with my wife and friends, as well as bigger things like doing a rubber ducky boat trip on a glacial lake on the Tasman Glacier, a trip to Samoa this winter, or writing a new song. I’ve had several experiences where things on my bucket list that were highly unlikely, like being able to go to my grandmother’s 90th birthday party on the other side of the planet in Amsterdam, came true serendipitously and I subsequently got to go and visit her several more times before she passed away at 98.

The car is certainly good medicine. I love being behind the wheel and I even enjoy the process of polishing it, while listening to a podcast on my phone. We haven’t been on a road-trip yet, but it is now second nature, more or less, driving a left hand drive car in a right hand drive country. I am now the guy that I used to give the thumbs up to in a gas station or other places, when people see my car.

I’m going to break this up and the next blog is going to be about a melt down I had a couple of weeks ago, which was both bad and good.

 

Day One External Beam Radiation for Prostate Cancer


I was all geared up to start on Monday 7 December, but it turned out that they had several people starting with both chemo and radiation, whereas I’m just doing radiation, so they changed it to Thursday 3rd December. Minor problem, I was going to be in Christchurch so we met in the middle and yesterday morning I was up at 05:30 and on my way to Mercy Hospital joining the early morning peak traffic hydrating from a bottle of water I had to finish by the time I was about half way there.

When you have radiation treatment you have to have exactly the right amount of fluid in your bladder and your bowel needs to be empty. The water helps push your organs out of the way and stops them getting hit by the radiation beams. If you don’t have that right, they’ll take you off the table to drink more or have a bowel movement (one way or another) and then you have to wait while someone else goes ahead of you as they are treating around 100 cancer patients a day!

They told me this happens to everyone around 6 times during their treatment and I didn’t want that being me. This involves changing your diet, for me it means drinking a lot more water than normal (apparently I’m in good company, in that most men live their lives in a state of dehydration) and avoiding any foods that can create wind, because gas also impacts on the shape of your bowel. If anyone wants details, I can share them but the list makes it very difficult to eat at restaurants as I found in Christchurch.

So it was with a sense of trepidation that a. I would arrive at Mercy Hospital in the right bodily state and b. that I would arrive there on time.

Once I got there I was sent downstairs where I was issued with my lava lava in a nice yellow tulip colored bag, got changed and escorted to the control panel outside the radiation room and then into the room where it all happens.

Mercy ScannerThe 2 machines on the side make up the CT scanner. When I was prepped I had an MRI and a CT scan to measure the size, shape and volume of my prostate. The CT scanner in  this room is there to make sure that you are lying in exactly the same position as you were when they took the first image. That way they don’t kill healthy parts of your body. The part at the top is where the radiation beams from.

You lie on the table with your head on a little support and your knees on the blue half pipes. They prod you into place so that you line up as above and then leave the room. Like most scanning systems they have microphones and speakers so they can stay in touch with you while you are in the room.

Once they get started the CT scanner and the radiation head rotate around your body in one 360 degree circle. It felt like something out of a science fiction movie and just as I was settling in, thinking “this is interesting” it was all over, they came in and told me I was done and I could go. The whole treatment itself took about 1 1/2 minutes.

I got dressed, went to my car and drove to work for a $4 Subway breakfast sub and a coffee that I had been hanging out for (not from Subway).

Then something hit me like being knocked in the head by an out of control snowboarder in a white out. I felt overwhelmed for a couple of hours. I think it was all the underlying stress that I had been ignoring and the release that the first bout of radiation was completed, I had drunk enough, followed the diet strictly, hadn’t embarrassed myself by having to get  up off the table, all the time reading books and Doctor Google and thinking about side effects, planning for succession at work if I needed to call in sick, all the things I’m trying to get done at work before the Christmas break, a friend who had just passed away during the week, reassuring my family and more. I was in a funk.

I worked my way out of that and had a good day in the office (my colleagues have been awesome), went home and once again felt exhausted. I ended up crashing on the bed for a couple of hours after comfort eating some nuts and my mandatory Kiwi Crush (a pleasant part of my treatment diet).

Now a day later and I’m still feeling a bit tired, but much better knowing I am on my way to dealing with this cancer. I’m getting focused on the future. Things like adding to my bucket list (number one is of course beating the cancer) and looking forward to Relay for Life. My kids have started Team Early Birds. More on that later.