The Backstory on My Back


acc HELPHi, I’m ACC 18 Number 201905123684, I’ve swapped the numbers a little, although it probably doesn’t make any difference. I’m fairly well known.

My back story consists largely of digital files and probably a few manila folders and other storage media in several Accident Compensation Commission, medical, physio, specialist, hospital, surgeon, Occupational Therapist, Pain Specialist offices around New Zealand. They get shuffled from time to time.

Having said that, everyone on my journey has been friendly, thoughtful and most have tried to help me. A few, who I haven’t met, somewhere in the system have the job of helping ACC to not have to pay for my surgery, with considered justification. I’ll talk about that too.

Blackroom Relay for Life 2016 Print-47In March 2018, I hurt my back getting ready to set up for the Auckland Cancer Society’s North Shore Relay for Life event. The annual 18-hour relay, raising funds for cancer services which I have completed 6 times. I started with my family in honor of family members who have died from cancer, including my late father-in-law.

Then I got cancer myself, and during the fund-raising process I’m proud to say that over 30 men got tested for Prostate cancer because of my story, but I’m getting ahead of myself. I was given the honour of speaking at the opening, having refreshments in the survivors’ tent and carrying one of the flags in the first survivors’ lap. A humbling and emotional experience.

20170325_155154Trying, unsuccessfully, to awkwardly pick up a bag of tent poles out of a trailer provided at the venue by the organizers, for a 4 room tent, would set off a chain of events that has opened my eyes to the plight of many New Zealanders, who desperately want to work, but can’t, because the health system is underfunded, under resourced and inefficient.I became one of them.

I have a job. I hold a management role at the NZTA, a job I love with an awesome team of people who provide mostly Real Time Travel Information to motorists and travelers around the country.

It’s been 14 months since my injury.

My Occupational Therapist, GP, Pain Specialist and my Manager have agreed that I can work 2 three-hour days a week. ACC funds taxis to get me there as I could be a danger to myself and others, under the daily pain medication regime I’m on. That allows me to do something productive as well as socialize with my colleagues and not feel totally divorced from my work.

It was part of my back to work program, which has stalled since the Orthopedic Surgeon advised me that we had ‘painted our backs into a corner, having tried every alternative to fusion and discectomy surgery.’

I am incredibly grateful that the NZTA hasn’t dropped me under the bus and that I still have a job, although I am not currently able to perform my normal duties.

Over the next while, along with other activities, I’m going to talk about my life, one shared with my family and friends, colleagues and the health system.

I’m going to talk about what happened, about why I still can’t go back to work, why I am still waiting for surgery after 14 months. How ACC don’t want to pay for the surgery, how I can’t afford to pay for the excess if I went private, and my current experience with the Auckland District Health Board and North Shore Hospital, where I was referred as an Urgent Patient on the 9th of April.

I have not yet been able to connect with the person who makes appointments. When I rang them at the end of April, the hospital representative at the Patient Service Centre said they must see me within 4 months, and it was too early to ring. I was told it wasn’t worth ringing before the end of May and even then, not to get my hopes up. I rang today and left a message on their voicemail.

I have Prostate Cancer.

Mercy ScannerDuring the dark days of 8 weeks of radiation treatment, followed by chemicals, I think I had less than a week off work, on the odd day when I was so fatigued that I couldn’t function.

I arranged my radiation sessions to be around 7AM every morning so that I could go straight on to work afterwards, and still be on time. That’s how I roll.

I am now fortunately in remission, and my latest blood test last week showed a good result. The irony is that Cancer is fatal and there is every possibility that one day, hopefully decades away, it will kill me.

On the other hand, chances are very good that after back surgery, I will be a little sore from time to time, manageable with over the counter pain relief. Yet, for cancer I had less than a week off work and with a back injury it has now been over a year!

Mine is a common story, but one with which for the first 40 years of my working life I had no personal experience. I’d heard stories, mostly about people who allegedly don’t want to work, and enjoy living off the taxpayer’s dollar, but there are so many more people like me, who desperately want to work and contribute to society. If you have a look at my profile on LinkedIn you will read that my goal in life has always been to help people.

I consider my work important, a contribution to reducing the pain of traveling on our ever more congested road network by offering information about planned and unplanned events, about expected delays, alternative routes, alternate modes of transport, helping people plan for holiday road trips and much more.

I lead a team of awesome people who really care about you, their customers. It matters to me, but I’m being kept from it.

It’s funny, we talk about the cost to society of people who are needlessly killed on our roads. The cost takes into consideration the contribution they will make to the country’s GDP over their lives. Yet, the cost to taxpayers to get me back to work by providing me with back surgery, is far less than the cost of keeping me away from work.

As I said, mine is a common story, but it’s not one that people like you and I can easily relate to, unless we are directly affected.

Of course, in each instance, it’s not just the patient, it’s our partners, our family, our friends, our colleagues and of course the workload that must be done by someone else, or perhaps not at all.

seatI’ll try to make the story interesting, maybe even have the odd laugh. But let me tell you, this is no joke. I have gone from being super positive and highly motivated, with a bucket list of things I want to do which I prepared when I found out I have cancer, to being virtually trapped in my home, on the border of depression, not being able to stand, sit or lie down for any length of time without significant pain.

I’ll share an email I sent to ACC after having read a report prepared for them by a specialist, who said that “The patient appears to be doing reasonably well”.

Interestingly, this person who was paid by ACC to investigate my case did not once speak to myself, my GP, my Orthopedic Specialist, my Case Manager, my Pain Manager or my Physio.

I guess ‘reasonably well’ is a relative expression. I’m not dying.

The email is quite personal, but that’s really the point. I am a person.

Anyway, that’s it for now. I’m hoping to hear back from the hospital today and am getting on with other things in the meantime.

You may find my story interesting; you may be in a similar situation yourself. I know I’m not alone. I understand it was stated in Parliament Question Time last week that the number of elective surgeries completed last year was 10,000 ‘elective’ surgeries less than the year before. Reasons included strikes and funding. It’s little wonder it could take months for me to just be able to speak to someone.

Feel free to comment or ask questions. I know I’m not alone here and you may be in a similar situation to mine. I grew up as a fan of New Zealand’s welfare state. I learned that we are the system and that if we don’t stand up for something, no one else will either. I just didn’t know how bad it was.

So, you there. Have you had any experiences like mine? How do you get some action without ruffling people’s feathers and having your manila folder dropped down the list a little? Of course, that wouldn’t happen would it?

I welcome your comments.

 

 

 

 

Two More Sleeps Before Relay For Life


Two more sleeps and I’ll be getting up on Saturday morning to, pack and head off to the Millenium Centre in Mairangi Bay, with my old runners and my new Thorlo padded socks, hoping the weather man is right and it won’t rain.

IMG_0817

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

I don’t do this for myself (well maybe a little). I do it for the 1 in 3 people in New Zealand, who, like I did, will get cancer. I do it for HOPE.

First of all I want to thank you all for your kind donations, for your words of encouragement, for sharing your stories of cancer, both personal and members of your family or friends, some who lost the fight to cancer and others who are still fighting the battle.

This has been the hardest year for me to fundraise for the Cancer Society, I’ve felt like most people are over donating and wonder if it is because I have been doing this every year for 6 out of 7 years. I’ve stuck with it because cancer is so insidious, so horrible, and to raise awareness that we don’t all have to die from it.

Early Birds 2018

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 do it because of the 20 people who were motivated to get themselves tested because of my story. That’s what Team Early Birds is about.

At the height of my cancer journey I didn’t have the strength to do this event. I visited the team two years ago and went home to sleep at about 3 in the afternoon and felt so frustrated that I wasn’t able to participate! Last year, I still didn’t have the energy to stay right through the night. I left at 10PM and started again at 4AM.

Blackroom Relay for Life 2016 Print-47This year I’m back in boots and all, no matter what it takes. I’ve taken 2 days of annual leave to let my body recover. I’m looking forward to the survivor’s lap of honour where those of us who are surviving cancer do the first lap, wearing a purple sash.

It is such an honor to do this and very humbling when kids you’ve never met before come up to you and tell you they are proud of you, that you inspire them. Some wear shirts with words like I MISS YOU MUM on their backs.

I’ll tweet a few updates from the event if you want to stay in touch and might do a Facebook Live post, but I will be conserving the battery on my mobile so it lasts through the night.

So again, a huge thanks to those of you who have supported me on this Relay For Life journey. I am very grateful and feel very fortunate that there are people who have my back. That’s what kept me going through my darkest days.

Now if you have any influence over the weather, I really don’t want to do this event in the rain again. Can we hold off until after the weekend?

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.

 

 

 

I’m in Remission, New Song for Cancer Album and Relay For Life


What a week I had last week, back to work blues, PSA blood tests for my prostate cancer and the usual agonising wait for yesterday’s meeting with my oncologist after my blood tests on Wednesday and more.

Benji RoomSo the visit was short and sweet, my PSA levels have gone down a little, without the help of any more drugs and after prodding my stomach (not quite sure why and I didn’t ask) I don’t have to go back for another 3 months.

That’s a weight off my mind and I can refocus on getting on with life and I have so much I want to do.

First, there’s Relay For Life on 10-11 March. Team Early Birds is back for another year and I need your help. Our team is a little smaller than in previous years and if you would like to join us, we would love your company. You can get all the detail here.

iPhone 145If you can’t join us, it would be great if you could leave a little donation. Even $5 is tax deductible and it is an awesome cause. With one in three Kiwis getting cancer, anything we can do to aid research and the awesome work of the Auckland Cancer Society who have been a huge help to me, is welcome. Last year I raised $1,500. So far this year I haven’t got to $50. So either way, can you lend a hand?

My Big Project A Cancer Video EP, the Last Song

EarlyAs you may recall, dear reader, I am working on a HAG project which is huge, creating an EP and video series for people with cancer and those who are supporting friends and family with cancer in some way to help them on their journey. If you missed that story, details are here and again I need help.

The last song is called Dare to Dream and after the good news again on Saturday, it seems the right time to share the story and lyrics with you. This song is intimidating to me because it has tracks that I can’t play including a sax and a gospel choir. I have no idea where to find either of these, but I am confident that with some help from my friends, I will.

The song is about being told I’m in remission and trying to process what that means. I used to think that being in remission means that you are cancer free, but when I asked Benji, my oncologist about that he said “You will never be cancer free. Once you have cancer, you have cancer. Remission means it is in control and you don’t need any treatment, for now.”

IMG_2153So for the foreseeable future I will be stressed out on the last week of each 3 month period and hopefully like yesterday, will be told the good news that I continue to be doing fine. Benji thought I was looking very well and looking back at photos of my pasty pale face of a couple of years ago when I was undergoing radiation treatment and dealing with chronic fatigue, I look great!

So if you’re still with me, here are the song lyrics. Super Better is an awesome book by Jane McGonigal which now has a game and a Facebook page. There is also a great TED Talk by her for those who don’t want to wade through the book.

Verse 1
I’m in remission, it’s a reprieve from my condition

In 3 months I’ll know more, for sure

Pinch me am I dreaming? Please explain the meaning

Before I close the door, does this mean I’m cancer free?
Chorus 1

The winter sun is crisp and clear,

I’ll write a list for 10 more years

Of things I want to do and see,

Things that mean the world and

Dare to dream, dare to dream

So much more for you and me

So much more that we can be

Verse 2
I’m in remission and I give myself permission

To embrace each new day as if the cancer has gone away

I’m going to grab a power up a SuperBetter lift up

Cause there are many on our team

Who need to dear to dream.
Chorus 2 (gospel choir for alternate lines)

Dear to dream

Watch me lift my hands up high

Dear to dream

Reaching out to touch the sky

Dare to dream

Take off like a bird and fly

Can’t believe this feeling

Repeats after break with lead guitar and horn section

songSo there you have it. I’m currently working on the demo for my second song called Who Stole My Words, which is about an incident where the chronic fatigue brain fog meant I couldn’t come up with simple words like current and channel to explain how I found myself upside down in an ocean kayak, without any fight or flight instinct because I wasn’t producing cortisol or adrenaline. I was upside down, underwater harnessed in thinking ‘this is interesting’. Anyway, I’m having a bit of a struggle going from fingerpicking to strumming and staying in perfect time with the clicktrack so I can add a walking bassline. But that’s another story.

So, can you help with Relay For Life, either with a small donation, or joining the team for 10-11 March in Mairangi Bay at the Millenium Institute? I’ll be there all night relaying with family and friends to raise money for the Cancer Society and in honor of the friends, family and colleagues who are fighting or who have lost their battle with cancer.

Do you know an Auckland based Gospel choir or a small horn section, or at least a sax player who could help with this song? The album will be Not For Profit by the way. I know I will have to pay for some of the work, which I will crowd source, but the end product will be free.

Mercy ScannerWant more info on my cancer journey? You’ll find it here. If you know anyone else who might find this interesting, please share it with them with my thanks.

12 People went and got PSA tests for Prostate Cancer


If you’ve been following my story, I’ve been asking for $5 donations for the NZ Cancer Society Relay For Life event where my friends and I will be walking around a track for 18 hours on 19 and 20 March.

I’ve also been encouraging everyone I can to go and get a PSA blood test AFTER checking their insurance cover, because as my insurance broker said to me once they found malignant tumors, “You are now uninsurable!”

image_1Today I was talking to one of my colleagues, who has also been a generous donor to this cause and he told me that he and 3 of his colleagues have all been to get PSA blood tests. That means that now 12 people have gone and had tests as a consequence of hearing my news. That is awesome!

Hopefully all 12 are clear and they now have a base line so that in future years they will be able to monitor their levels, which is how I found out that I have cancer. My levels weren’t high at all, but they were increasing consistently every 6 months or so, which alerted my GP to the fact that there could be a problem.

Thank you all so much for your support, whether it’s donations, offers to drive me around when I’ve been over tired, colleagues for supporting me when I’ve had time off work, cards, offers of places to stay for a break and the “how are you doing” comments, tweets, Facebook and LinkedIn messages. It’s quite overwhelming and I’m feeling very humbled.

Most exciting of all though is the people getting tested because of me. If I could save one life or reduce the impact on someone because they found out early, wouldn’t that be something! Go Team Early Birds!