What’s It Like to Have Prostate Cancer Radiation Treatment, a Bursting Bladder AND What Does that Have To Do With the Price of a Cup of Coffee?


Mercy ScannerI chose radiation treatment for my prostate cancer because it allowed me to continue to work and because it has a 95% success rate.

On the first visit to the clinic with my wife, we were waiting in the lounge to have the process explained to us and for me to have a CT scan so that they knew the shape of my body. This was so that every time over the 8 weeks of my treatment they would be able to focus the radiation on the specific area to be nuked and minimise the risk of damaging my bodily organs.

My wife and I were sitting in the waiting room when a man rushed pass at a frantic pace, loosening his belt as he ran for the bathroom in a cold sweat. He was in so much of a hurry that he was sitting on the toilet before he had even got the door shut.

One of the things you can lose in this process is your modesty. I wouldn’t ever want to be that guy, when all the heads turn in his direction, embarrassed for him, turning away again as he comes out, hoping he didn’t see them.

The process is that roughly 45 minutes before you have your radiation  treatment you need to have drunk enough water to have a full bladder when you have your therapy. The reason is that this helps push your organs away from the prostate treatment area, thereby protecting them from harmful rays.

IMG_2086I was lucky because I was often able to get the first appointment of the day, meaning that on those days I didn’t have to wait in the lounge with my full to bursting bladder for too long.

So you arrive at the hospital and check in with your calendar schedule and they ask you how you’re doing. I always had a stock answer whenever anyone asked how I was, which was “GREAT!”, with a big smile. Here they would say, “Actually how are you really doing, because when you are having radiation treatment, we actually need to to know?” That was a mindshift for me and there were times when I felt a bit sorry for myself and when other people asked how I was, I told them as well. I wish I hadn’t, but then they did ask right?

So the next thing you do is go downstairs to a changing room where you collect your yellow daffodil bag which contains your lava lava which you will wear for the next wee while, holding on to the water in your bladder. Your clothes go into the bag and you put it back on the shelf with the others, realising just how many people are currently getting radiation treatment like yourself. It’s all sorts of cancers of course, not just prostate.

I met some great people while waiting for my treatment, both patients and their partners and we shared battle stories. Often the partner was feeling more stressed than the patient. I met people who were from out of town who had to stay at Domain Lodge, a facility provided free by the Auckland Cancer Society for cancer patients because the distance was too far to travel each day. This had all sorts of consequences. Children still had to be looked after, bills still had to be paid and some of them were running their own business and typically the treatment was every day during the working week. This is one of the reasons why I am a staunch supporter of Relay For Life which is next weekend, the 10th overnight through to the 11th of March at the Millenium Sorts Institute on Auckland’s North Shore.

lava lavaSo it comes your turn and you adjust your lava lava so it won’t fall off and wander down the corridor, past the control room where they are going to watch you on camera, put your valuables on a chair. Then you lie gingerly down on the scanner bed, hoping you can hold your water. IMG_2256

The friendly staff chat away with you and each other as you get settled, with your head under the scanner and your legs on a pair of moulded supports. They put a pillow under your knees and you focus on your bladder.

Then they adjust your lava lava and with a pen of some sort draw a mark at the point where the radiation will centre, which becomes less embarrassing after the 20th time; and they leave the room. Then the noise starts up and they talk to you through headphones as the treatment begins. It only takes a few minutes and as it finishes, you thank them and rush for the bathroom to empty your bursting bladder as quickly as you can as they tell you how well you have done once again.

IMG_3512Sometimes you have to wait longer than your booking time and it can get pretty uncomfortable. One morning they had to do maintenance on one of the scanners and I had to wait so long that I had to go to the bathroom, empty my bladder and then drink another bottle of water and wait the best part of an hour for my already stretched bladder to fill up again.

The worst day was when someone before me arrived late and I had to wait over half an hour longer than usual before I got my turn. They said if I wanted to I could empty my bladder and start again, but I had to go to a meeting at work and I didn’t want to be at the hospital any longer than I had to. So I gripped on to the edges of my chair, tightened and loosened, tightened and loosened (not a typo) my core muscles focussing on not losing control of my bladder.

IMG_3437I came very close to having to rush to the bathroom several times, but I didn’t want to blow my perfect record. My pride rode to my rescue.

The pain and pressure was getting worse and I persisted. Nurses came to me a few times and asked me if I wanted to start again, pointing to a nearby water fountain (not the imagery you want at that time but well meaning). I replied that I would soldier on.

Eventually after about an hour I got my turn and barely adjusting my lava lava, just acknowledging to myself that by the time I got to the room, it might be unraveling from my body, I waddled to the machine and gingerly got onboard, hoping for everything I was worth, that I could hold it in.

We got settled and barely aware of the daily x (actually a little line) marks the spot being drawn by the nurse just above my privates. I just focused all my energy on my now very full bladder which was telling me that I wasn’t responding to the messages it was sending me. I was determined to hold it in, but it was getting more difficult by the minute and I was just wishing they could speed it up. Time seemed to go into slow motion, but the discomfort got worse.

Finally the nurses left the room and I lay there pulling up on my core muscles for all I was worth, cringing with the pain and being told through my headphones that I needed to keep still. “Easy for you to say I thought”.

No, I needed to pee and I needed to not pee and I needed to hold those muscles in. What if wet myself? What if I peed on the machine bed? I still had a little dignity and I remembered that guy, rushing for the bathroom on my first induction visit.

I almost got off the machine 3 or 4 times, but I hung in there. Then the radiation treatment started and amidst the din of he rotors, I thought to myself, “I just can’t hold on anymore, I have to get off!” Then realisation set in, as I was being reminded to keep still, that if I got off while the radiation was beaming at me, I could potentially damage other parts of my body.

I clung on for dear life, cringing, counting the seconds, trying to keep still and then after the machine stopped, I was halfway off the bed as the nurses were coming back and there I was.

Now I was the guy rushing for the bathroom for all I was worth, not bothering to waste time locking the door, letting the lava lava unravel to the floor as I dived for the toilet. Oh the relief through the pain!

IMG_2150I picked up my body with my bruised dignity, got changed, went to the bathroom again and finally walked up the stairs to the nurses station to get a smiley face on my monthly chart, to say I had my treatment for the day. IMG_2105

This had been one of the days that I was hoping would never happen to me, but they did tell me that we all go through it.

Eventually after 8 weeks I had completed my treatment and eagerly awaited my visit to the oncologist who I anticipated would have good news for me.

Unfortunately he didn’t. He said that while 95% of people respond well to the treatment and find themselves in remission, I was in the 5% who didn’t.

So after 2 months of drinking water, driving each morning to treatment and then off to work, I was no better off than I had been before I started. That was a bit of a body blow and whilst I understand statistics, I had thought about the odds and as a keen poker player had thought to myself that if I had gone into a casino for a tournament and been told that I had a 95% chance of being in the money at the final table, I would have been really excited. The 5% seemed really unlikely.

IMG_3516The Coffee

After each radiation treatment I would go into the hospital cafe and treat myself to a flat white and a huge cheese scone. I couldn’t have breakfast before the treatment, so this was my little reward to myself and I came to look forward to it. When I went back to the hospital for specialist appointments I usually went back to the cafe for nostalgia’s sake, but it never had the same satisfaction as it did on the days I had radiation treatment. IMG_3418

So here’s where the coffee comes in. A cup of good coffee costs around $5. Coincidentally, that is the level where a donation to Relay For Life becomes tax deductible. That means your $5 donation only really costs you around $3.50. That’s peanuts right? But what if all my readers gave that?

I was going to say, if you know anyone who has cancer, how about making a small donation in their honor, but you know me don’t you? You now know me better than you did before, because I have shared some very personal experiences with you.

Next weekend when I spend the night walking around the track at Relay For Life with my friends and family, I am doing so to help raise funds for the Cancer Society to help fellow cancer patients with accommodation, psychological help, research and much more. It is all rather meaningless if I don’t get donations and I haven’t even got a third of my modest target so far.

So here is my plea. Can you find it in your heart to make a $5 donation for a good cause? 1 in 3 Kiwis will get cancer. I hope that will never be you, but it will probably be someone you care about. Will you please help? I would be so grateful.

RelayForLife17f

This guy must have been really hot. The purple sash denotes being a cancer patient and survivor

It’s been a real struggle this year to get donations. So I really thank you for paying it forward and also am very grateful to my friends and family who are in Team Early Birds, relaying for 18 hours to support me and also people who they have lost or are still fighting the good fight.

 

How I Chose My Prostate Cancer Treatment AND Got to Remission


I have had feedback from many people that they are reading my blogs about my cancer journey and appreciation for my speaking out, when for many men this is a taboo subject. I really appreciate the feedback. It’s not exactly a comfortable thing to share. There are a couple of things I would appreciate even more. If you think these blogs are useful, please leave a comment or share it with others and if you can find it in your heart to do so, please visit my Relay For Life page. It’s a month away and I am desperately hoping the weather isn’t like it is today!

IMG_3494The biggest win for me has been that I am now up to 20 people who have been motivated by me to get tested for cancer, which is awesome. Prostate cancer does kill people. On Wednesday night I was standing by the window in a stinking hot room at the West Plaza Hotel in Wellington with no air conditioning, looking out at the night sky and hoping it would cool down and watching the Halberg Awards live on TV. From West Plaza

In the memorial section, there was the face of Steve Sumner how died only a year ago from Prostate Cancer, I thought of a radio personality (I haven’t asked her permission so won’t use her name) who told me her father died from Prostate Cancer because he didn’t get checked until it was too late; and I thought of Paul Holmes who on one TV interview said that he wished he had never known he had cancer, but reading this story, I suspect he changed his mind as he realised how important life and his family were to him.

Anyway, I met with my urologist and my oncologist to discuss my cancer treatment options. They gave me an information pack from the Auckland Cancer Society and whilst being very diligent in trying not to let their biases show, explained a little about the options available to me. I have had a little experience with specialists who are very focused on the particular treatments or therapies they offer, and they should, because they shouldn’t be performing them if they don’t believe in them. But one size doesn’t fit all.

I was given four medical options. I did also try alternatives like Pomi-T for a long time and sea cucumber which tasted horrendous and cost a fortune. They didn’t hurt me, but the tumors kept growing.

  1. External Beam Radiation. 8 weeks of radiation, which according to my oncologist has a 95% success rate for people at my level of cancer.
  2. Brachytherapy. This is where they insert radioactive isotopes into the prostate and treat it from the inside out.
  3. Hormone therapy. This is similar to the treatment they use on sex offenders to reduce their sexual urges, reducing testosterone and increasing female hormones. Testosterone feeds tumors, so less testosterone means less for the cancer to thrive on.
  4. Radical Prostatectomy or surgical removal of the prostate gland. As it sounds.

I listened to their arguments for and against. I read the pamphlets. I joined a prostate cancer forum and asked other people who had prostate cancer about their treatments and found that they had all done a lot of research; and uniformly recommended the book Winning the Battle Against Prostate Cancer by Dr Gerald Chodak, which I mentioned and linked to in this blog.

I also went to a prostate cancer support group which was the most depressing thing I’ve ever been to. I appreciate the intent, but what an experience. One man had been told that day that he had less than 6 months to live and he was telling me how he was bewildered and horrified, struggling to comprehend a life of daily exercise, good diet and basically doing everything right and instead of looking forward to retirement in 5 or so years, he wasn’t going to be around for it; and a guy so depleted of testosterone that he had suffered massive weight gain, hot flushes, emotional swings, inability to reach an erection (and the lack of desire to do so with the depression of not having it) and more. I understand the purpose of the group and applaud the Society for providing this service, but it wasn’t for me. It could have just been that I picked the wrong day to attend.

With regard to treatment and side effects I want to reiterate that everyone is different. If you look at the side effects for any drug you take on the packaging or leaflet, most people don’t experience many of the potential effects, but the odd person could have severe reactions. I’m not trying to influence your decision. You need to make it for yourself and decide even how informed you want to be.

External Beam Radiation

As a poker player, 95% odds of success appealed to me. Imagine going into an 8-week poker tournament knowing you had a 95% likelihood of being in the money at the end if you followed instructions!

The center offering the treatment said they were prepared to provide my treatment at 7AM each morning, so I could go to work afterwards and have minimal disruption to my life.

The side effects to consider were:

  • Hair loss in the area (not a worry)
  • Mild fatigue (about that…)
  • Frequent urination, weak stream and burning pain while urinating.
  • Possible diarrhea, incontinence, impotence and proctitis.
  • Reduced or no seminal fluid with ejaculation

Many of these side effects disappear a year or so after the treatment. Everyone is different.

Brachytherapy

Many of the symptoms are similar to external beam radiation, but instead of 2 months of radiation, it’s a brief surgery where radioactive seeds are implanted and that’s it. A key difference is that the side effects occur fairly soon after the implants have been placed and improve, where the symptoms of external beam occur later. Side effects include:

  • Burning pain during urination
  • Difficulty passing urine
  • Rectal bleeding
  • Sexual Dysfucntion
  • Urinary Incontinence
  • Bowel Incontinence
  • Diarrhea
  • Having to stay away from pregnant women (what if they don’t know they are pregnant?) and adolescent children.

Hormone Therapy

In the book I mentioned above, Dr Chodak explained that the treatment is more or less the same as what is known as chemical castration, the treatment that is used to stop sex offenders, because one of the primary side effects is that it reduces your libido or sex drive. Great if that means reducing the risk of a criminal reoffending, but not for a normal male, or in fact a normal couple.

  • Loss of interest in sex (libido)
  • Erectile dysfunction
  • Hot flashes
  • Loss of bone density and risk of fractures
  • Loss of muscle mass
  • Weight gain

Radical Prostatectomy

This is surgical removal of the prostate gland. The things that worried me the most were the risk of nerve damage and the potential to never be able to have an erection again as well as a reduction in penis size. Sorry of this is something that you find creepy to read, but it’s amongst the things I had to consider. If I was 70, these things might not be such a big deal, but I’m not and they are. In the USA this surgery is frequently done by a robot, but here it is humans and I don’t care how good the surgeon is, stuff happens, there is a high risk of at least partial nerve damage.

Ignoring infections and other things that can go wrong and potential risk of tumors crossing the enclosure holding the prostate gland in place (also a risk with biopsies and the Brachytherapy), side effects include:

  • Urinary incontinence and/or urine leakage which can mean having to wear pads for 1-3 years or longer
  • Trouble getting or maintaining an erection, potentially permanent
  • Dry orgasms and loss of sensation and pleasure (and the impact of that on your partner)
  • Infertility
  • Penile shortening
  • Bowel Injury

But Wait There’s More

So this is just scratching the surface. I read the book and it literally gave me nightmares. It wasn’t a short book and went into way more detail than what I have shared above. It was very thorough in explaining all of the details of the different surgeries and what factors you should consider based on the severity of the cancer, your age, your lifestyle. It helped me make my decision from a personal and clinical perspective, but I’m not sure I would recommend it. I was pretty upset and stressed out for a long time after reading the book. I can’t even bring myself to go back to it to quote parts of it to you.

My decision

I want to reiterate again that my decision was based on my feelings about the treatments, the people offering the treatments and my personal circumstances, my relationship (of course my wife was also part of the decision making process because it affected both of us), my age (I plan to be working for at least another 10 years), my family and obviously wanting to survive and live a productive and happy life.

I chose external beam radiation for various reasons.

  • A 95% success rate is not to be sneezed at (unless you become semi-incontinent!). It’s no laughing matter either as people who have semi-incontinence can attest to.
  • My granddaughter was 7 and I didn’t want to lost that special relationship of being able to sit next to her, have her on my knee or miss out on hugs. I was worried that if for her safety, I had to keep my distance that this  might have a long term impact on our relationship. You can’t get that back and she was too young to have been able to understand if I noticeably kept my distance.
  • While it would impact on my ability to travel by plane for work, which I was doing 2-3 times a month, I could do some of the treatment over Christmas.
  • Doing the treatment at 7 each morning meant that I wouldn’t have to take time off work.
  • IMG_4479I wouldn’t have to risk sitting next to someone on a plane with radioactive seeds between my legs. Imagine saying to the airline, I’m flying on Friday. Please don’t seat me next to a child or a pregnant woman. What if the woman doesn’t know she’s pregnant? Okay please don’t seat me next to ANY woman. I wonder how many people do and if any women struggle with fertility as a consequence of having randomly sat next to someone on a plane or at a concert. I wasn’t going to have that risk on my conscience.
  • The side effects seemed to be the least severe of the 4 options.

“I’m sorry, but you’re not in the 95%”

IMG_2105Unfortunately after 2 months of radiation treatment, when I had a series of scans to see how it went, the treatment was unsuccessful. I was in the 5% of people for whom it didn’t work.

I got many of the side effects, some very severe, but the cancer was still there. I may write about the year during and after the treatment for anyone that wants more insight into what it was like. From drinking a bottle of water every morning on the way to Mercy Hospital so that my full bladder would push my internal organs out of the way during the radiation treatment, being afraid that I couldn’t hold it, the painful urination, the loss of libido and erectile dysfunction, a feeling of loss of dignity, chronic fatigue, depression, needing to stay close to a toilet and on the other side, meeting some wonderful people, both fellow patients and those who helped me with treatment of my body and mind.

Another Choice

So then I had 3 more options. Brachytherapy wasn’t much of a choice given the radiation had already failed, so I had to go to hormone treatment, given I do not want the surgery.

This treatment was just pills, nothing more. I had side effects and continue to have some lingering effects. I had to make use of the counselling from a psychologist at the Cancer Society.

IMG_2290The end result was about 7 months ago my Oncologist said “You are in remission”. I had to ask what that means, because sometimes people talk about being cancer free. There is no such thing, but you can be in remission for years or decades.

This is important because I frequently read or hear stories about people being cured of cancer. As I understand it, there is no such thing. We all have cancer cells, they may be dormant or managed, either with treatment, diet or our immune system, but you do not get cured.

I am now on 3 monthly visits and in January had my 3rd one where my oncologist said my testosterone levels are good, my cortisol levels are lower than we would like, but I am producing some, I am still barely producing adrenaline, but my PSA levels are low and stable. I don’t have to go back for another 2 months.

Early Birds 2018

Our 2018 singlets have just arrived. The 18 for 2018 is made up of the names of people living and sadly past who we are walking or running for on 10-11 March. The day after my birthday.

I’m in remission. I am focused on Relay For Life. Check out our Team Early Birds singlet. The 18 for 2018 is made up of the names of the people we are walking for over 18 hours. We are raising funds for the Cancer Society who do amazing work. They don’t take any money out of it for admin or running the society. It goes to research and supporting services like the psychologist who helped me and accomodation for people who have to travel a long way from home for their treatment. I’m on a mission to get people like you to donate $5 to this wonderful cause. Think of it as a koha for the time I spent writing this blog.

For those who are facing decisions like mine. I’m happy to answer questions and I will probably share more details of what it was like physically and emotionally to go on this journey.

CLGR7749In the meantime, I’m working on recording my EP of 4 songs called The Cancer Diaries. I am struggling with the rhythm guitar for the second demo, called Who Stole My Words and may need to call on one of the guitarists who offered to help me with this album to lay down a track for me. I hate asking for help but I need some with this.

I hope this has been informative and not an uncomfortable read. It is an uncomfortable condition as is any cancer and I hope that this blog is helpful. I hope that I can increase the number of people who get tested early beyond 20. I hope you will leave a comment, question, share, or make a little donation to Relay For Life.

 

 

 

Prostate Cancer, Gory Details, Treatment Choices and Relay For Life, Can You Help?


IMG_0817

A sign we walk past during the night in Relay For Life

I’m writing this blog to ask for your help in raising awareness and fundraising for Relay For Life, to support the Cancer Society in raising funds they need both for cancer research and to support people who need help, from counseling to transport and even free accommodation when people have to travel out of town for treatment.

The Cancer Society is funding research amongst others in the area of treating cancer like a virus, which is showing a lot of promise and would mean that people like me in future might not have to go through the treatments and processes I went through.

IMG_4287Can you spare $5 in support or in memory of a friend or family member with cancer. You can do so here. You can do it with a message, you can leave your name or mention the person you are supporting, you can do it anonymously and if you are in New Zealand it is tax deductible. I’ll bet that you, dear reader, know at least one person who has cancer. Several of you of course know me, so there’s one.

Like my previous blog, if I get some donations, I will spare you some of the gory details that we prostate cancer patients have to deal with.

I would dearly welcome your donation, I’m struggling in receiving them this year. Where I am doing well, is that the number of people who have told me that they have been motivated to get tested for cancer has now risen to 20! Every single one of them is cancer free and more importantly know so and have baselines.

So in my last blog, I spared you the gory details of the first visits to the urologist and trading my dignity for hope.  Now I am going to offer to spare you details of some of the side effects of prostate cancer treatment, some of which I endured and some of which I chose not to risk. I had to make decisions based on choosing life (if possible) and the most suitable treatment for my lifestyle and work.

IMG_2184 (2)Some of those side effects included painful urination, short term or permanent erectile dysfunction, never producing seminal fluid again, the length of your penis being reduced, damage to other organs, chronic fatigue, loss of libido and depression. Some of these are experienced by most prostate patients and some depend on the choice of treatment, which of course depending on the seriousness of the condition may not be optional if you want to live. It’s also important to recognise that everyone responds differently to different treatment.

The next steps were a series of biopsies. I’ll spare you the details of how they do that for prostate cancer other than that they approach it from behind. Initially they found 3 tumors and confirmed that they were malignant. Then over the next few months, scans and 2 more biopsies confirmed that I had at least 5 and they were slow growing.

They gave me 3 options. One was to implant radioactive seeds into my prostate a treatment called Brachytherapy. Here’s more if you’d like to know more about how it works. I decided against it because it meant staying away from my granddaughter and pregnant women for about 6 months. Besides not wanting to change my relationship with my beautiful young granddaughter, how do you know if someone in your circle, or even randomly sitting next to you, say on a plane, is pregnant? They might not know themselves.on

IMG_4479Basically you are emitting radiation, which while not powerful, could have unintended side effects for others. The percentage likelihood, very slim, but percentages weren’t working well for me at this time and I wasn’t going to have on my conscience that I could be sitting next to a random stranger, potentially damaging a foetus she didn’t even know existed. Obviously some people do that. You can’t exactly hop on a flight and ask not to be seated next to a young girl going through puberty or a woman of an age that she could be pregnant and perhaps not know it.

The urologist was keen on this option. It would mean a quick procedure and a couple of days later I would be home. It would have minimal impact on my work, but given part of my work is reasonably frequent air travel and what I just told you, it wasn’t a great option. It was a treatment he would perform with my oncologist, who I had yet to meet. Specialists tend to favor opportunities for surgery or treatment that is their specialty of course and I respect that.

IMG_2061The next option was 8 weeks of almost daily radiation on this beast, which includes a CT scanner which would first make sure that every morning, after drinking enough water to fill my bladder and push my organs out of reach of the radiation (where possible), that I was lying in an identical position.

It would give me a 95% chance of killing the tumours. They could accomodate me so that I could go in first thing in the morning, if I got up early and have the treatment before work. They could do it over December and January as well so that would mean 3 weeks where it did not impact on my job.

The third option was to remove the prostate altogether, so if the tumours haven’t spread beyond the gland (pretty difficult to tell), they might get it altogether.

At this point I felt I needed to be informed. What were the risks, benefits and side effects? I thought back to watching Sir Paul Holmes on TV before he passed away from Prostate Cancer in 2013, saying that he wished he had never known he had cancer at all.

So how do you choose? I purchased a book called ‘Winning the Battle Against Prostate Cancer, Get The Treatment That is Right For You‘ by Dr Gerald Chodak. Oh how I wish I hadn’t bought the book, but I’m the sort of person who needs to understand.

It explained in gory detail how the different treatments worked (including some chemical treatments that we hadn’t discussed). Every treatment came with side effects and after effects. I hardly got any sleep for the week it took me to read this book. It scared the hell out of me and whilst you need to be positive, as stress has an impact on your body’s ability to fight cancer cells, it’s pretty hard to make an informed decision that WILL impact the rest of your Teamlife without being informed. I chose the book over Doctor Google, because it was recommended by cancer patient support groups.

So in the end I chose the 8 weeks of radiation and yes it had lots of side effects. Most of these are now over, 2 years later, but I’d be lying if I said it had been easy. If you’d like the gory details, please don’t pop $5 into my Early Bird account.

lava lava

Naked barring my socks, each morning I lay on the scanner, watching them mark with a pen, where the beam should go, trying to hold on to my dignity and my full bladder

Unfortunately soon after 2 months of treatment they told me that I wasn’t in the 95% of people who found themselves in remission after the treatment, but I felt very happy for those who were.

I had side effects from the treatment and scans showed the tumours were still there.

I did work on positivity and put my energy into starting my EP The Cancer Diaries following suppRelaort from my friends when I didn’t have the emotional strength to pick up my guitars or play them. I also took up the offer of free counselling from an Auckland Cancer Society specialist cancer psychologist, one of the services funded by your donations. If you haven’t heard the DEMO of the first song called If I Could Turn The Pages, you can listen to it here.

I hope you don’t want the gory details and will find $5 to shut me up although if you have prostate cancer, or want to know more about getting tested or the journey you are facing, I’m happy to share my experiences with any individuals on request.

Several people have found it helpful to speak to someone who has cancer rather than well meaning people, who haven’t had the experiences or had to make difficult decisions.

Early Birds 2018

Our 2018 singlets have just arrived. The 18 for 2018 is made up of the names of people living and sadly past who we are walking or running for on 10-11 March. The day after my birthday.

So instead of encouraging me to talk in more detail about the physical and emotional experiences I’ve been through in the last 2 years, please drop a couple of coins in the virtual bucket and lets celebrate life and hope and support Relay For Life 18 with my team. The Early Birds.

Support for Cancer Sufferers and their Families


unI want to say a huge thanks to everyone for their wonderful ongoing support. It has meant the world to me. The cards, text messages, messages on social media from Twitter and Facebook to LinkedIn, phone calls, offers of driving me to and from treatment, somewhere to stay and recover (had an awesome three days with dear friends in Mangawhai over New Year’s when I had 3 days off treatment) have been amazing.

One of the things that took a bit of getting my head around was my family and how my cancer affects them. We have lost some of our closest family members and friends to cancer and I didn’t always appreciate how everyone else in my family was feeling. It’s something I noticed at the hospital that it was often the partners that were really struggling. We patients are more focused on how we are feeling and how to cope with side effects, keeping up at work and on my part feeling guilty for falling asleep at 7PM or earlier every night and going to bed early, leaving my wife on her own, evening after evening for months. I’m still doing that and could be for a little while yet.

IMG_3524After I left the radiation clinic for the last time, with instructions from the nurse, not to come back, which I was happy to agree to, I went to the cafe for my last coffee and cheese scone, staple diet to keep me moving.

IMG_3486Then off to the car to head to work for business as usual. I was feeling disoriented.

For 2 months my life had been focused on getting up around 5:30AM every morning and heading across the bridge for treatment and now it was over. The card from the staff may have been a factor, because it was like leaving your job, something that had become routinely normal. I wandered around a little bit as I headed to the car. I sat there for a little while, looking at the card, looking at the smiley face stamps on my appointment. Thinking about the PSA test in 3 weeks time and wondering what the oncologist would have to say to me when we catch up in a month, especially given that my PSA tests had never shown me to have abnormal levels, despite the tumors. Will I be clear or will I need more biopsies. I don’t like the idea of more biopsies because each one increases the risk, even slightly, that cancer material if there is any left, could then be passed into my bloodstream. IMG_2289

Anyway, got to work and got busy, then when I got home, I found a wonderful message on the front door from 7 year old Madison, which cheered me up immensely.

IMG_2261Mads (and all my family) has been tremendous, she is very empathetic but also great and grounding me.

Then it was off for a family dinner at Genghys Mongolian Restaurant with my family. I took it easy on the food, but the taste sensation  was amazing, even though I stayed away from the garlic and spices as instructed.

IMG_2290The piece de resistance was a cake, totally unexpected given that it wasn’t my birthday, which neighboring diners probably assumed. This brought tears to my eyes after a long two months and long day.

So now we wait and life gets a little back to normal. I still woke up at 5 this morning, but i was able to doze off again. They say its all about attitude and I have always felt that I am a survivor. I have also also felt that I have a guardian angel, my Oma, who had a 20 year battle with cancer (after she was told she would probably not live past the first year).

You don’t get through these things on your own. I’m a bit of a loner when it comes to dealing with stressful situations. Cancer has certainly changed that. I now gratefully accept the good wishes, the offers of support, the prayers and constant goodwill from colleagues, friends, family, acquaintances and total strangers. I’m also extremely aware that I am lucky, there are so many people worse off than me that have amazing strength and great attitudes.

I am focusing a little more on what matters. Family, lifestyle, maybe a little self indulgence to come, because you can’t enjoy the fruits of your labors when you are gone.

My immediate focus beyond my next oncologist appointment is the Auckand Relay For Life. As you may know, my daughters have set up a team called Early Birds, which recognizes that if I hadn’t had those PSA tests, we wouldn’t have known I had cancer. My prognosis would be very different.

I don’t know if I will be able to do the marathon distance I did last time, but I will do what I can and have a great team behind me. Our team isn’t just about me, although it is what I asked for when my daughters asked what they could do to help me. It’s about all the people that we and our friends have lost to cancer and those who like me are battling it still. It is to fund raise for the NZ Cancer Society that only survives through donations, sponsors and events like this.

If you would like to help and support us, you can:

  1. Join the team. There are no limits and it really is an awesome 24 hour event.
  2. You can make a tax deductible donation. If all my friends donated only $5 (the minimum amount that allows you to claim back against income tax) we would be giving the society a real boost in supporting cancer research as well as facilities like Daffodil House, where some of the patients I met in the clinic were staying for free, and the many other free services they provide like booklets, a library, free counseling and much more, without Government support.
  3. Come along for a visit. Especially the survivors laps at the beginning and end of the event. I can promise you a very moving experience with hardly a dry eye in sight.

Thanks again to all of you for your amazing support. I can’t tell you what it means, even just to have a ‘like’ or comment on my blogs and my social media.

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.

 

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.