When I was told that I had cancer, I wondered if I might turn it into a moment. When you watch programs like American Idol, you hear of the hardship people went through, which motivated them to enter the competition.
One such ‘moment’ was that with my promotion of Relay For Life, I told my story about catching PROSTATE CANCER early, which motivated more than 20 men got themselves tested, which is awesome.
I started writing songs about my journey and decided to create an EP called THE CANCER Diaries and combine that with a music video, which would tell my stories of tough times and of hope. The final song, which is half-finished will culminate in a song called Dare to Dream, which needs the backing of a gospel choir for the emotionally inspiring (I hope) finale.
The intention was, and is, to donate the finished product to the cancer society. I am hopeful that it will help other people on their journeys with cancer or in support of people with cancer, as it did me in writing and playing the songs.
Anway, life got in the way.
Since COVID19, the good people at Boosted have set up a program for artists, especially musicians and songwriters to raise funds and koha because they are unable to perform live during the lockdown period. I told them about my idea and they said that it sounded like a great project for a Boosted campaign.
So I have set one up, which you can find here. I will be performing live on Sunday evening at 5 PM right there on that page. Hopefully, it will go well. It took me most of yesterday to get my sound gear working for streaming. It’s probably been a year since I was last on Twitch or YouTube live.
So the plan is to finish the songs, record them in a studio together with a few volunteer musos and create The Cancer Diaries EP and video. I’m also hoping for support from other people who can help with video and especially with a gospel choir. Do you have one hanging around somewhere?
I also need your help to spread the word about the campaign which runs for 30 days from today, in any way or form that you can.
As you may have seen from earlier posts, I had a back accident 15 months ago and after 4 visits to hospital, the most recent being of 7 days duration, I am still no nearer to getting the surgery my orthopedic spine specialist / surgeon recommended for me and requested ACC to fund.
What went wrong?
I’m going to tell you about 2 critical things. The first is about how I injured myself, by which I mean the primary cause and the second is about who I got referred to.
The Primary Cause
My latest accident didn’t seem like much. I was at my 6th Relay For Life in March last year and ready to walk a marathon distance (my goal, which I achieved) over 18 hours.
Setting up prior to the event and prior to heading for the survivors’ tent (I am in remission from prostate cancer), we had a 4 room tent to set up, and the poles and pegs were in a big bag in the trailer that was provided by the organisers to get our gear from the car park to our team site.
It was super heavy. No one seemed to want to get it out, including the guy driving the tractor. So I tried. Unfortunately, my back couldn’t take it and I ended up with a back strain injury that still has me off work today, 15 months later.
I managed to do the distance through the use of medications like Panadeine and I had booked a couple of days annual leave after the event to recover, based on previous years experience. I also had a float and massage the following day, so I didn’t feel too bad after that. A bit sore, but otherwise OK.
A few weeks later, on ANZAC Day, in fact; I remember because it occured on the weekend before the public holiday (a Wednesday) and my wife and I had taken the Thursday and Friday off to go away in the Corvette for a few days holiday.
It had been raining, and on the Sunday before our planned holiday, I mowed the lawn and using the catcher to collect the heavy wet grass. I had to twist on an awkward angle to detach the catcher from the mower, twisted my back again, and the rest as they say was history.
You can read previous blogs but the key point was that whilst an MRI showed damage, ACC weren’t satisfied with the injury having been caused by the incident, they said it was age based degenerative disc disease. They said they would try to see if a previous injury could be relevant that they could tie it to which would convince them to cover the cost of the surgery and herein lies the problem.
A Skydiving Accident
Many years ago I had a skydiving accident. It was a tandem jump and if you have ever experienced one, you know that the customer is at the bottom and the Jumpmaster is on top. When she tried to flare at about 30 feet we got into an air pocket and instead of opening up, the parachute closed down. Instead of gliding to a running stop, we dropped and I took her weight on top of my own, on my tailbone.
It hurt like mad, but I was also flying high on adrenaline from the jump, so I didn’t really feel the pain that much. That night it was very sore, but we went to a big neighbourhood party and I found that bourbon acted as a great pain killer, so I managed pretty well and enjoyed the festivities as long as I didn’t make any sudden moves.
That night there was a bit of a storm and one of our trees was blown over.
The following morning, I was trying to clear branches in our yard, bent down and found I couldn’t straighten up again.
I went to physio who asked what happened and I told my story, the ACC record said “bent down and hurt back while picking up branches in garden”. I had 26 physio visits, was referred to Pilates and was assigned a personal trainer.
I did talk to them all about the sky diving, but it never made it to the ACC records. It therefore registered as a strain.
I was racing my land yacht in a 180 km enduro on 90 mile beach. I crashed at the northern end of the beach, picked myself up and raced back again and had to endure racing through snapper holes around Ahipara Beach, which is like racing on sheets of corrugated iron. Lots of pain, but again lots of adrenaline. For much of the race, I was going at speeds of up to 100 kph on a thin cushion as you can see on the video above, and with my feet sitting on a steering rod so all of my weight was on the lumbar area of my back.
At the end of the weekend it was a 5 hour drive back home to Auckland and a couple of days later, guess what? I was in the garden again, bending over and suffered intense back pain.
Guess what went on my ACC record?
Lots of physio for an injury sustained doing gardening.
So, when the specialist looking for reasons to not approve surgery (me having had every other treatment they could think of, for over seven months), they looked at what I had been referred for (back strain), looked at old injuries sustained in the garden, so probably not significant, all because I didn’t understand the importance of mentioning the crash or the sky diving on the initial ACC form. After all I was getting treatment. That was all I was concerned with at the time.
I might have got a very different response to my request for surgery if the primary causes of injuries had been clearly recorded, instead of lost to obscurity. Now I am chasing a Review of ACC’s decision not to fund the surgery which is going to be time consuming and expensive.
So if you are injured and covered by ACC, make sure that, irrespective of which straw broke the patient’s back, that the primary cause of injury is documented, even if you are happy that the treatment will fix the problem.
I’m now in a situation after many back injuries, that ACC are claiming age based disc degeneration disease and I am going to have to prove that I did in fact sustain some major injuries and that it was the cumulative impact of those injuries that has me now needing expensive surgery.
If I had made sure they had all the information correctly recorded, it would probably have been plain sailing for me now, instead of 15 months off work, the possibility of losing my job, and a long, expensive and stressful battle to get my back repaired so I can get back to work.
2. If Referred to a Specialist, Make Sure it is one who Operates in Your Local Public Hospital.
I was referred to a very good surgeon by my GP, largely because he is one of the category of trying everything else before getting the scalpel out and doing major surgery, which in my case will involve 2 surgeons for 4-5 hours and a 5-day stay in hospital.
Because of all the drama with ACC (New Zealand’s Accident Compensation Commission), in April I asked my GP (at the recommendation of my surgeon) to refer me to the public hospital. Whilst I have other medical insurance, it only pays (up to) 80% of the costs, which means I would personally be up for around $18,000 that I have to find myself. It could even be more because they won’t know exactly what they have to do until they cut me open.
So I was referred as ‘URGENT’ to North Shore Hospital on the 4th of April this year. I told them I was not working and that I could come at short notice and asked if they would put me on the cancellation list and they said “Yes, we have a cancellation list, is there anything else?”
I rang a few times, mostly talked to voicemail and the first time I spoke to someone they said “It’s only been a month!” To which I responded, “yes but I was referred as urgent.”
This month I had a flare up and spent 7 days in the Orthopedic Ward at North Shore Hospital. They did an MRI, hooked me up with a pain team and eventually once the pain was under control with drugs, they let me go home.
They told me that the stay would not be seen as my First Specialist Assessment (FSA) for which there is an expectation that you will be seen within 4 months of referral. They said that the Orthopedics Team knew about me and I would probably now be seen within 2 weeks. So they scripted 2 weeks of pain medication for me. They said I would get a confirmation letter from the hospital.
So I got out of hospital on the Sunday, waited until Wednesday and rang to find out when my appointment would be. I had to leave a message on their voicemail. I rang again on Friday and again left voicemail.
On Monday this week I got a phone call telling me that they did in fact have a date for me in late August. Today is the 17th of July.
So much for my 2 weeks of pain medication. I should have got the message when the doctor who checked me out of hospital laughed when I said I was expecting to be seen in 2 weeks.
If my GP had originally referred me to a specialist who also worked on the public health at North Shore Hospital, there is every likelihood that I would have been referred for surgery at the hospital in November last year, and could well have been back at work by the beginning of this year.
Now instead, I am still waiting for a First Assessment, and they will want to decide for themselves what treatment I should have. So while the logic behind my original referral was sound, the end result is that it set me back anything up to a year.
Hindsight is a wonderful thing, but the point I am making is that you, dear reader, may have a back injury like me, or perhaps a knee or shoulder injury from playing sport.
By learning from my experience, you might be able to have a better experience, receiving treatment within the same year of your injury and not jeopardising your employment and having double the stress.
Being in severe chronic pain for over a year is horrific. The potential consequences can be many including
losing your job,
becoming addicted to pain medications,
sleep deprivation with all that comes with that,
becoming stressed to the point of depression,
having no social life or family life,
which also results in relationship stress.
Here are two ways you can reduce the risk of experiencing what I’m going through.
If you injure yourself doing something major and then aggravate it with a lesser injury. Insist that the cause on the ACC form is the major impact and the secondary injury is clearly shown as secondary. It might not matter now, but in 10 or 20 years it could save you from the horrible 15 months I’ve endured so far.
If you need to be referred to a surgeon, even if you have medical insurance, get referred to one who operates from your local public hospital. You may not end up needing to go public, but at least you have viable options and it could save you many months in getting treated.
Hi, 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.
In 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.
Trying, 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.
During 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.
I’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?
Have you missed me? I’ve been off the grid, after trying to be superman and lift a heavy bag of tent poles out of a trailer for a 4 room tent at Relay For Life and following that up a couple of weeks later mowing wet lawns (Auckland right?), piling up the clippings into a barrow and then lifting them to head height to empty into a garden bag, the straw that broke the Cappel’s back.
MRI Result? 3 bulging discs on both sides of my lower spine, all touching nerves and causing me lots of pain in my back and legs. I had 3 (starting very early in the morning) day trips to hospital when the pain was at 9/10, each time they kindly shoved a finger where the sun don’t shine to check that it still had muscle control, because my left leg is very weak and I had no sensation surrounding my left knee and referred pain down both legs. Or maybe they did it to scare me into not coming back:)
I thought I was over that one with my prostate cancer which has been in remission for just over a year now!
It was a real eye opener sitting in the triage rooms and seeing how awesome the staff are, dealing with a constant stream of frightened, sick and sore patients. My hats off to the staff (and the volunteers who fed me) at North Shore Hospital.
So I’ve been popping morphine and other drugs, (off work for almost 2 months on ACC) to the point where my brain has been mush. It only hurts when I stand, walk, lie down with a pillow between my legs (for more than 4 hours) or sit (only on a wheat bag on a straight kitchen chair with another bag on my back as I look longingly at the couch). I can’t drive and my decision making is such that I would not represent myself or my team well at work. I’m good at putting things in the wrong cupboards or forgetting what I went into a room for.
I’m not complaining, the drugs are keeping the pain between 4-7/10 and whilst I hate not having a clear head, having no responsibility means I can focus on getting well and not worrying about dropping clangers at work where I really do need to be on my game. My wife kindly took 2 weeks of work at the beginning to look after me. I can now look after myself and walk to the letterbox and back. Not twice in a row though I discovered.
The good news is I am mending. Tomorrow I will be getting 3 Transforaminal Steroid Injections guided by x-ray to within half a millimeter of the 3 nerves (sounds impressive doesn’t it). I had one a few weeks ago and it got the pain levels from peaking at 9/10 to peaking at 7/10, so we’re hoping that this lot will bring it down to a level where I can reduce the meds so I can stay in bed all night and get my brain back to near normal and start planning my return to work.
Work by the way has been fantastic. I have really felt bad about not being there with my team at the end of the financial year, but conscious that if I don’t recover carefully it could be much worse. As it is I’ve been told to be extremely careful after the injections because my back pain may be reduced, but I will have to be really careful when the pain is down to not lift or do sudden movements which could set me back, so I’m expecting some physio to follow.
So I’ve been off most social media, blogs and anything else requiring concentration, but I have been thinking. About real estate and location based services and all the mistakes we make when we buy houses. As you know, I wrote a book a few years ago about using apps, maps and location based services. I’m now looking at a follow up course rather than updating the book. I’ve been thinking about this while I’ve been off and am keen to hear from anyone who would like to share mistakes or things they would do differently when they buy their next house.
I’m not looking for sympathy, but I’d love to hear some stories about homes you have bought and things you should have checked out first, maybe the neighbourhood, crime, amenities, the commute, property values, flooding or other things that you could have researched first. Drop me a comment. Apologies for any typos, I did proofread this about 10 times.
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.
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.
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.
This 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?
I 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.
I 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?
Contains the robes we wore when undergoing radiation treatment
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.
So 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.
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.
Sometimes 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.
I 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!
I 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.
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.
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.
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.
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.
Contains the robes we wore when undergoing radiation treatment
Four of the people who have supported me in my cancer journey were worse off than me. There was Shelley, who had a fall 2 weeks ago and we had her funeral on Saturday. They had said she had maybe a couple of months, but it spread faster than expected to her spine and brain. Then there is another Shelley who has to have chemo every 3 weeks for the rest of her life. Because she chose a low cost insurance policy (who thinks you’re going to get cancer?) she had to sell her house to get quick treatment to save her life. There is Lee, my colleague and friend who is still fighting. Finally there is my great friend of over 30 years, Daff, who we buried in December, right before Christmas.
When I’m down on the ground
Where do I go from here
I’m feeling flat, well fancy that
I’m feeling sorry for myself
I ought to feel ashamed
I get another day
Others aren’t so lucky
But my friend says
In the morning, I put on my face
Wipe away my tears
You don’t see me then
I need to fight with all my might
Put on a happy face
Take off that frown, bringing others down
Impact my fate
Isn’t it ironic
The people you use as a tonic
Are worse off than you
But my friend says
In the morning, I put on my face
Wipe away my tears
You don’t see me then
I’ve trained myself, sometimes it works
I paint a picture, that hides the hurt
People used to say to us “You’re looking well!” They were trying to pep us up and when I was depressed and fatigued (I didn’t think of it as that, just frustrated) I’d start my day looking in the mirror and say I’m alive and well and I feel great and try to get some endorphins going with a big fake smile. As you know, I shave my head. The other four all lost their hair. They were all struggling emotionally with that but they kept brave faces.
Read the last chorus and this will tell you what is really going on.
Out of 13 countries, New Zealand has the lowest ranking for access to cancer medicines. Relay For Life is working to help that and the Cancer Society who helped us all doesn’t get Government funding. Do you reckon you could donate $1 for each of my friends and myself, to go to the Cancer Society? That would be $5. That could make a real difference, truly. You can do it here.
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!
The 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.
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.
External Beam Radiation. 8 weeks of radiation, which according to my oncologist has a 95% success rate for people at my level of cancer.
Brachytherapy. This is where they insert radioactive isotopes into the prostate and treat it from the inside out.
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.
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.
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
Having to stay away from pregnant women (what if they don’t know they are pregnant?) and adolescent children.
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)
Loss of bone density and risk of fractures
Loss of muscle mass
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)
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.
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.
I 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%”
Unfortunately 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.
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.
The 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.
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.
In 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.
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.
Can 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.
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
Basically 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.
The 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.
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.
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.
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 when my GP told me that my PSA levels had increased every test over the last couple of years when they should fluctuate, he said there was a risk that I might have cancer. He told me to lie up on the bed in his surgery, pull my pants down and my legs up and before I had a chance to ask, “is this necessary?”, his gloved finger went where the sun don’t shine. To say that it was unpleasant was an understatement, but I barely had time to feel embarrassed.
We wasted no time in making an appointment with a urologist and off I reluctantly went. I’m not sure what I was dreading most, being told I had cancer (If I did) or having yet more insult and injury to my dignity.
A sign on the track at Relay For Life
He was a very nice, gentleman who explained to me what was going to next and asked if I had any questions. I was feeling pretty much in shock and bewildered and was barely taking in what he said.
He asked me what my flow pressure was like when I peed. I thought it was OK most of the time. They told me on the phone that I had to arrive with a full bladder for a urine pressure test, so I was ready to relieve the pressure.
I had to pee in a basin that had a sensor in it and I thought I did pretty well, as he stood in the next room, watching the gauge. He then burst my bubble and said that my flow was well below average and asked, would I like a script for something that would make it flow faster.
I declined. Up on the bed and he started prodding my stomach and then asked me to pull my pants off, lie on my side with my knees hard up against my chest.
Now dear reader, you may be feeling squeamish, you might be feeling embarrassed, you might be thinking, I’m pulling out of this story.
You might be thinking, why is he telling me this? Is it necessary?
No it isn’t, but I want your help and if I get some donations for our next Relay for Life, I won’t share the next step with you and I won’t tell you graphically how I felt.
People ask why I share my story. I’ll tell you why. All around me people are either battling or losing the fight to cancer. One in 3 people in New Zealand will get cancer and we have to do something about it. We can do something about it. The numbers are pretty similar in the western world.
Relay For Life isn’t just for raising money for cancer research, it is about remembering the people we love, work with, our friends and family who are affected by cancer. It is as much a celebration of life as a sharing of loss.
We walk for 18 hours in relay, and the number 18 on our singlets if you zoom in, you will see it is made up of the names the 13 of us are walking for. Some have passed away in the last few months, some are battling, some have been gone for some time and some are in remission like me.
When you walk around the track and you see an 11 year old in front of you and on the back of his shirt it says ‘I miss you Mummy’, you know why you are there.
These are the bags we put our clothes in, when we go in for radiation treatment. Each one of these bags represents a person being treated for cancer at any given time, just in this clinic
I hate asking for money, but it isn’t for me. It may will help you or someone you care about. Remember that number. 1 person in 3 in New Zealand will get cancer at some stage in their lives. Draw up a little list of people in your family and then separate one third of the names on that list. Imagine if those people got cancer. This is personal folks.
This year Relay is on the 10th and 11th of March. We got through the night to symbolise the cancer journey. You don’t have to walk the whole time, it’s a relay, but many of us like to do as much as we feel able. Our team is quite small this year. So far only 13 people. If you feel you would like to join us please head to the Team Early Birds page and let me or one of the team know.