Twice in one day! My journey with photons.


IMG_2184 (2)As I was sipping my pleasantly flavored urinary alkalinizer this morning,  I was thinking back to yesterday. Because I had a few radiation free days over Christmas, I had to go in to the hospital twice for my photon blast. Sounds a bit like a cocktail drink doesn’t it. Maybe I should invent one when I’m better. It’ll be a purple drink that will knock your socks off.

When I got home after the second bout I was planning on playing guitar or something but I didn’t really have the energy to do anything.

It’s an odd feeling. I was expecting to feel tired and I did, but its a different type of tired. The radiologist defined it quite astutely this morning, if not a little close to the subject of attention, when she said “A lot of men find themselves feeling knackered when they have two doses in one day.”

In my part of the world knackers are slang for testicles if I need to be any clearer, but in this sense it relates to the exhausted state at which horses or other livestock are no longer of any use to their owners and are sent to the knackers yard to be rendered into pet food or other items of greater usefulness.

IMG_2154 (2) Anyway, I was feeling a little more energetic as I got changed this morning for day 19 of my treatment. Back in the groove as it were, getting into my lava lava, chatting with others in the waiting room and then heading for LA 3 to watch the purple light on the radiation machine spin around my torso.

I feel like I should be doing something like walking, or painting the fence. But I might have to be a bit like rally driver Possum Bourne’s uncle who I used to work with at Tait Electronics. He said to me that whenever he felt like going for a run, he would lie down until the feeling passed.

I have written a speech this morning, which I hope to be allowed to give at a dear friend’s wedding next week, so I haven’t totally wasted the day.

Anyway, I hope you’ve all had a great Christmas and wish you safe travels if you are heading away to celebrate New Year’s Eve. I have 3 days off treatment and will be joining the throng heading for the winter-less north, although I have been receiving weather forecast emails containing severe rain warnings. Not a problem though, I’ll have a guitar or two with me and good company. I wrote the song Raglan Rain on just such a trip. Maybe my muse will come with me.

Talking About Cancer


This morning I was reading a great blog called Letter to the Newly Diagnosed, by Dan. It is really well written and I would recommend to people who have been touched by cancer.

Control RoomLike most men, I was pretty modest when it came to discussing my private parts and bodily functions. That changed on the day that I thought I was going to get a quick blood test form, but ended up with the finger.

Since then I’ve been pushed and prodded by a variety of people including doctors,  nurses, radiologists, oncologists and urologists. I’m adjusting to the fact that when I get to the radiation centre and I’m asked about how I am, they actually want details if there is anything  out of the ordinary. They need to know for my sake and it gets a little easier each day.

It’s interesting the questions I get from friends and family, which range from are you feeling the effects yet? Does it burn when you pee? Has the fatigue set in yet? The answers if you were wondering, are not yet. So far its more emotional, coming to grips with the reality of my situation and the impact it is having on my work and home life, because it’s not just about me. Everyone is feeling this, especially my family.

Once I get there its on with my lava lava.lava lavaYep, I’m allowed to keep my socks and shirt  on.

I’m learning new skills, like how to do number two without doing number one, because one needs to be empty and the other needs to be reasonably full.

Your full bladder helps push your other organs  out of the way so you aren’t getting radiation in the wrong places. If you have gas or worse in your back passage, that can push your bowel such that it gets more radiation than the little bit it will already get. I got shown some very cool MRI and CT images of what it all looks like. No I’m not taking a selfie stick in there.

So if you get up on the table and the CT scanner finds that you haven’t had enough to drink or you’re not ready, you will lose your place while you deal with it as appropriate. These are discussions I have regularly and I have been warned it happens to most people around 6 times during their treatment phase. They say don’t worry, but I do. I dread being told that I have to get up off the table and have an enema or something. That would be another first that I don’t need. I’m not beyond being a little embarrassed yet.

ARO LoungeI’m happy sitting in the lounge with my fellow travelers on this journey as we wait our turn in one of the rooms, but I don’t want to be going back for a second go.

I mentioned in a previous blog about How to Talk to Someone Who Has Cancer, I’m getting pretty comfortable talking to friends and family and even colleagues (don’t ask questions if you don’t want to hear the answer:) ), but it still feels strained talking to other cancer patients in the lounge while we wait for our turn on the table.

You don’t know how they are feeling, what’s running through their minds. So despite having unwanted intruders in common, its sometimes difficult to even get a good morning from people and you don’t want to push them. But then I’ve only had 6 days of treatment so far and I’m sure as our faces and costumes become familiar, conversations will happen, even if its just a bit of cancer humor.

Anyway, the sun’s shining and tomorrow I’ll be up bright and early at 05:30 ready to drink (water) and drive with the rush hour traffic for Day 7 and one more tick and smiley face stamp on my star chart.

Thanks so much for all of your support, it is wonderful how many friends and associates have come out of the woodwork, even people I don’t know personally who have reached out to me, who have been through the same process. It is very much appreciated.

 

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.

 

Let’s Nuke those Prostate Tumors


Since my first blog 6 men and one woman have decided to go and get PSA tests done for prostate and other conditions, motivated in part due to my blog. That is awesome, not only that they are doing it but also reflecting back to me. I hope I can increase that number through sharing my journey.

For those who I have motivated to get tested, I would like to reiterate the message from my blog about life and other insurances. If you test positive for cancer You Are Now Uninsurable. Please make sure you are comfortable with the level of your life and heath policies first. Once you find out you have a life threatening condition, even once you are in remission, it’s unlikely that you will ever be able to get health or life cover again. Even if you are confident you will be fine (like I did) and are just getting tested, (like I did) because its the right thing to do, or because your partner keeps telling you to (like mine did), if the test is positive, it is now too late.

IMG_2059First I’d just like to sincerely thank those of you who have left comments and messages of support, here, on LinkedIn, Twitter, Facebook and other places where I have a presence. I’ve never been in the position of recipient for messages like these before and it’s very humbling. I have also had phone calls and cards from colleagues at work and many messages and prayers from friends, family and acquaintances including some who have survived similar journeys.

A lot of people sent me messages of support for Monday for which my thanks. What you didn’t know is that I wasn’t able to start on Monday as planned, because they had so many people who are starting on Monday with both chemo and radiation.

IMG_2049They wanted me to start on Thursday, but I was down in Christchurch enjoying the balmy weather. It was 32 degrees on Wednesday and 28 on Thursday. I’m usually looking forward to coming home for the warmer weather but it was the other way around.

So how was my first day? New blog coming.

 

How Do You Talk To Someone Who Has Cancer?


Last week my wife and I went into hospital to get me inducted into the process of external beam radiation. I’ll spare you most of the detail. It largely involved a CT and MRI scan to ensure that the radiation only hits the affected areas and to minimize radiating healthy parts of my body.

radiation Auckland Star 1903

Radiation Treatment according to the Auckland Star in 1903

Anyway, as I walked to the bathroom (part of the process is having the same amount of fluid in my bladder every visit), a woman piped up that she had more hair than I did. Her punchline was that this was because she was wearing a wig. I was taken aback, thinking “how do I talk to someone who has cancer?”

Then of course I realized that I have cancer and people will be wondering  how to talk to me. Funny how you have these moments of lucidity!

I realized that I now have the right to share black humor with other cancer sufferers because we are all on the same boat, so I quipped back that losing my hair wouldn’t be a problem for me.

I think humor is a very important aspect of health. People survive many tough times by engaging their sense of humor as my friend the Joyologist Pat Armitstead will attest to.

So back to my new compatriot under the wig. When she was called for her appointment, they asked her if she was well. REALLY? She responded with “I wouldn’t be here if I was!”

As she went off to her appointment I pondered on this topic and was a little disappointed in myself. Clearly she was feeling stressed and I could have sat down with her, engaging with a bit more of a joke or a chat. I will do that in future if I have the opportunity, particularly after my first bombardment with radioactive isotopes. Having become a veteran of cancer treatment, I will feel more empowered.

So how do you talk to someone who has cancer? Just like you would talk to anyone else, just keep in mind that they have a lot on their minds and may be distracted, oversensitive, tired, confused and most likely a little stressed. Lighthearted would be a good place to start. Some of us will be open to conversations and some won’t. Respect that either way.

How should you not talk to someone about cancer? The other day I was in the office lunchroom and an “exspurt” (deliberate misspelling) was giving an oratory on cancer. I was disappointed because he’s a nice guy and he obviously didn’t know that I have cancer. Anyway this kind hearted expert proceeded to tell anyone within earshot that as soon as any kind of cancer gets you, it’s all over Rover. “It will kill you, maybe not today or tomorrow,  but they all die from it”, he expounded.

I quietly left the room thinking that in our business, we not infrequently complain that every man and his dog are traffic engineering experts, telling us how to do our job. So if you have an opinion like that, I’d appreciate not hearing it. You never know who you are standing next to and what they are dealing with.

Footnote: This is my third blog about my cancer journey and I had some trepidation about sharing my adventure. It is helping me work through some of my thoughts, but more importantly:

6 people have now come to me and told me that they are going to get tested, motivated by my story and that’s really exciting. If I can help one person, who like me, is in an early treatable stage of cancer, that otherwise wouldn’t have known about it, what a wonderful thing that would be.

I really have appreciated the support from friends, family, colleagues and total strangers, some who have shared intimate experiences and all with kind thoughtfulness.

Don’t be afraid to talk to me or ask me questions, or simply leave a comment. Prostate or any cancer should not be a taboo subject.

You Are Now Uninsurable!


These are the words Tom, my insurance broker and consultant said to me a month or so ago when I told him I had Prostate Cancer. Not too long previously I had reduced my life cover and the delay before I can claim on my income protection insurance from 2 to 3 months off work, against his advice I must admit.

Insurance

By David Fletcher; Dominion

I have spent a fortune on Life Insurance and Income Protection Insurance premiums over the years and never once made a claim. We often debated whether we should drop them and thought about how much money we would have saved if we had put the same amount of money in the bank.

It turns out that there is some cover that I may be able to access from the Income Protection Insurance and I am working through a pile of forms at the moment to prepare a claim. I wouldn’t have known about this cover if it wasn’t for my broker Tom Fox of Canopy Group, for which my sincere thanks.

So far the gap between what Southern Cross has paid and my cancer related expenses is probably in the region of $15,000. A pittance compared to what some people spend on more difficult cancers. Of course I don’t know what’s ahead. I have a little sick leave up my sleeve so if I find myself feeling too tired or unwell to work as a consequence of the radiation treatment, I’m OK, but I’d hate to think of what my situation would be like if I didn’t have my insurances.

So here’s the thing. Insurance is a grudge purchase. We don’t expect to claim and the insurance companies hope we won’t. That’s how they make money and that’s why as you get older the premiums keep going up in proportion to the risk. It’s often the first thing to go when times are tough.

We do have public health, but chances are if I had to rely on it, I would be on a waiting list while the tumors grow and the likelihood of being able to get treatment outside of my work hours is probably next to zero in which case my job could have been at risk. I must say my employer has been fantastic and very supportive which is awesome, but financially its my burden.

I cannot get buy any new insurance, I can’t ever increase my cover. So here’s another piece of unsolicited advice from me:

If you are in your 50’s (and I have lost friends much younger from cancer and other conditions) get yourself some cover before you have the PSA test, so that you can honestly say that you have no known conditions, because you don’t. As soon as it is on record with your GP or specialist that you have cancer, it’s too late.

My Prostate Cancer Might Save Other Lives


This could be boring, so stop now if you don’t want details, but after this if you don’t mind. So far since I wrote my I have Prostate Cancer blog, 4 people have said they will now go and get PSA tests. If I can help one person to catch it early like I did, then going public on this would be a huge success. It’s just a simple blood test.

Many thanks to those of you who left me messages of support on my various social media pages. It really is appreciated. Guys, you don’t need to have the digit inserted in most cases. In my case that did nothing other than make my sphincter smart for 10 minutes. What is going to save my life is the fact that I had multiple tests and each test the PSA level was higher than the previous one. I am still within the level that is considered unlikely to have tumors and I have 4 or 5.

winningWhen I first found out I had cancer I read all the material, visited Dr Google, rang the cancer society for info and bought a book Winning the Battle Against Prostate Cancer, which came highly recommended. But I wouldn’t recommend any of them unless you need to. It’s pretty ugly reading about the possible side effects of the treatments. I joined a cancer community, which is cool, but not really for me.

Then I did my best to put it out of my mind until I had to think about it, which is now. So while I have been on active surveillance, other than tests and biopsies, I did my best to put it out of my mind. No point in dwelling on it any more than you need to.

So this blog is mostly a journaling exercise on my part to help me work through my trip to remission. If it helps other people, awesome, if no one reads it, that’s cool too.

So the next blogs will be about my journey. It’s probably of most interest to people who first find out they have cancer and perhaps to those who want to know how to relate to someone who has this condition.

It’s kind of interesting because I don’t want this to define me, I have more important things in my life like music, family and a job I am passionate about. I’m not after attention or sympathy. The journaling may be a catharsis of sorts and may answer questions for some people. I’m open to questions or comments and all opinions and experiences are mine. I’m not a doctor. Don’t rely on me for any medical advice other than if you are a male over 50, IMHO start getting PSA tests with your annual check up.