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 over 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.

 

 

 

 

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My Injured Back Loves Float Culture AND my 4th Float in 1987


If you have been following these blogs, you will know that I have been off work with 3 bulging discs in my back. On Monday the surgeon told me we have now tried all non-invasive treatments and he has sent an application to ACC, our national insurer for accident injuries, for fusion surgery. The good news is that after the surgery has been completed it will simply be a matter of recovering and a 99% likelihood of getting back to normal work. Believe me when I say I am eager to get back.

Meanwhile, I’ve been going to Float Culture a bit more often  and I have to tell you it is having results. Yesterday I felt the least pain over a complete day since I injured myself back in April. I was down to pretty much zero inside the tank and about 3/10 when I got home after the massage from Kim. When I went to bed it was about 5/10, normally 7/10 and today the following morning, after my exercises, it is about 4/10. I didn’t have to get up in the night, although I did wake at 4.

FC6I believe this is the cumulative effect of previous floats, which is amazing, because even with the drugs, this is the best I have been. It will be interesting to see how long it lasts. If you suffer from chronic back pain or other limbs, I strongly recommend you try floating together with massage after the float.

I don’t get anything for this, I’m not an affiliate or anything, I pay the same as anyone else, but tell them Luigi sent you:)

So back to the future and my 4th ever float from my journal in 1987

I fell into a relaxed state very easily this time. Nothing very interesting. I felt tension in various muscles that had been used in the last few days.

Several times I noticed that I was floating deeper in the water than previously. I take that to indicate deeper relaxation and less oxygen in my system. I.e. I was breathing more shallow.

I had a number of violent muscle spasms, some causing minor splashes. Not painful, but sharp and sudden.

A highlight was a sensation that I was a speck floating in a black void, with vivid white streaks of light like miniature comets racing in two opposing directions. It was like a 3 dimensional hallucination. I was in the middle, but simultaneously watching from the outside looking in. 

One other strange experience, another hallucination which was particularly vivid. I felt sudden euphoria after imagining I heard 3 musical notes, 2 of the same tone and one a major third higher, in an even tempo.

Getting out, I felt reluctant and disappointed at leaving my comfortable cocoon. I felt reasonably normal, though very relaxed as I climbed out and had a shower.

I was thinking that this float had hardly had any effect on me, as I buttoned up my shirt. It was only then that I realised I had put it on inside out. I then started feeling a little light headed.

I started feeling mildly euphoric and experienced something like tunnel vision. I found myself highly amused by the red dye which infused from a herbal tea bag in my cup. It appeared as though the tea bag was bleeding.

There was a guy sitting opposite me in the lounge, where I rested after the float. He grinned and laughed quietly to himself, arose and walked out. I grokked him. 

Coming home I felt an abnormal burst of energy and engulfed myself in gardening; hedges and lawns. I did not want to sit down and read, even though I had the house to myself. This is highly unusual for me as I am a bookworm and generally read 2-3 books and a magazine or two, more or less concurrently. 

Just as a footnote, regrettably after my cancer treatment, I no longer seem to produce much in the way of endorphins or adrenaline. So whilst I feel very relaxed after a float, I no longer feel the flush of natural opiates that most people enjoy after a float. The reduced pain I’m feeling right now though is more than enough reward. Perhaps I am now producing more encaphelins than normal. These are the body’s natural pain killers. That’s a plus. My back has now though, after writing this gone up to about 5/10, but for the first day in 7 months, yesterday I felt very little pain for an entire day.

Anyone with a major injury, or perhaps a condition like polymyalgia will appreciate what that means. Again, if you suffer from any form of chronic pain, I strongly recommend taking not one, but a series of floats. Constant pain 24/7 sucks, I can tell you. If that is you, what have you got to lose?

There are ways to make this economical. I pay a monthly subscription that not only gives me cheaper floats, but every couple of months they give me a couple of vouchers. There will be two first time floaters heading to Grafton some time in the next couple of weeks, one of whom is claustrophobic. She will try one of the rooms and can leave a door open.

 

A Few Hours of Bliss at Float Culture


I arrived in an addled state this morning at 11AM for my 10AM appointment for a float and massage at Float Culture. It was in my diary for 10AM, but somehow that’s when I had booked my taxi to pick me up. I only got a few hours sleep last night, that’s my excuse and I’m sticking to it.

When I got there, they told me they had cancelled my appointment because I hadn’t turned up, even though I had confirmed this morning. I just tapped the button, not even reading it, or I would have realised and called for an earlier cab. How often do you do that with EFTPOS or paywave, just hit accept without looking at the price?

FC9Anyway, after my heart dropped, it turned out I was in luck and despite messing everyone around, they were able to fit me in. They asked if a Pod was OK rather than one of the newer ‘rooms’. When I’m floating on Epsom Salts laden water in the quiet and dark it could be a farm water trough for all I care.

I keep a pain diary so that I can discuss my physio treatment, exercises etc for my back injury with the team of people assigned to restoring my health and getting me back to work. (3 bulging disks pushing against nerves which has kept me off work for 6 months) The injury has me at a pain level of 6-7/10 most of the time and that’s with some hard hitting pain medications. This morning I was up at 2AM (6/10) 3-4AM (7/10) and up again at 6AM with 6/10.

Once I was in the pod, for some reason I struggled to keep my mind quiet and even using breathing techniques, my brain would be off on some tangent before I could count 5 breathes in and out and the hour was over all too soon, BUT I could barely feel my back when I got out of the tank for a shower and I still had a massage to come.

Now I’m no biochemist and my understanding was that endorphins are what used to give me the bright colours and the grin that wouldn’t stop, back before I had radiation therapy, and enkephalins are the body’s natural painkillers, but it seems they both come from the same part part of your brain. I didn’t have the buzz, but I also didn’t have the pain!

Anyway I went straight from the tank to the massage room for an hour of total relaxation.

At the end Kim said to take as long as I needed. I could have quite happily gone to sleep at that point. Well when I did get up from there, I was pain free, I was able to stand up and with a bright red rosy face, I felt the way you probably take for granted. I was able to put my track pants and shoes on without grunting and groaning. I was even able to stand up, leaning on a counter to look out the window watching for the cab to arrive without any pain.

Now to be fair, after the taxi ride home I was up to 3/10 and now I’m now at 4/10 but that’s still a lot less than 6-7. It will go back to 6-7, but I can’t describe how good it felt to be pain free without the use of drugs. No other treatment other than morphine has been able to do that for me in the last 6 months.

If you have any sort of chronic pain injury, I strongly recommend not just having the float, but combining the two. If you think how relaxed you feel after a massage, imagine having the massage when you are already totally relaxed. I pay a membership subscription and occasionally I get given a voucher for someone to get a free float (does not include a massage).

If you live in Auckland, leave a comment and I’ll use some random method to let someone try it for FREE. Find out more about floating on their website. I’ll pick one person on 1 December. Think of it as an early Christmas present. That’s worth $100, but I’m sure you’ll agree the outcome is worth much more. Do remember it is sensory deprivation so if you get claustrophobic, this is not for you.

Meanwhile if you’re still here, I’m going to get into the Delorean and zip back to 4 October 1987 for my 3rd float. You can go back to my previous blog for the 2nd one.

Now just to set the scene, I was working for a company that was bleeding money for no obvious reason (yet). I was making sales for 6 figure sums of money, delivering cheques in some instances, but somehow even though they had been cashed, they never seemed to reach the company bank account. It got worse from there when not long later I arrived at work on my way to a sailing weekend on the family yacht, to find out why my pay hadn’t been deposited. I met the receivers who were in the processing of padlocking the office door. To make matters worse, a certain person (not me) had taken a first class family world trip on my company credit card (note, if you get one of those, you are jointly and severally liable for any debt) and the bank took me for the money. I ended up losing just under $40,000 and I was just an employee and had to refinance our home. Take it that I was a little stressed.

So, off to the Belleview Clinic in Mt Eden on 4 October. This is what I wrote:

“My third float. Nothing spectacular. I didn’t feel any more relaxed, or different. The float itself was unremarkable, anticlimactic. Yet as I sat down to relax afterward, I felt a vibration throughout my body and a general sense of well-being. Not euphoric, but content.

I concentrated some energy on relaxing my jaw, probably the last place where I still felt stress from clenching my teeth.

Driving home I felt rag-doll relaxed, although I still felt fragile in the face of pressure, real or imagined. (Note at this stage I wasn’t aware the company I worked for was being embezzled, I just knew something was seriously amiss), It is difficult going from a cocoon to a demanding environment. I felt like I didn’t want to let go of the comfort of zero responsibility that I enjoyed in the tank.

Floating Book

The current edition available from Amazon

My general bearing and outlook was positive and I could see many parallels to other relaxation methods like meditation. I felt as though I was taking a short cut. It was interesting that subsequently I read similar comments in ‘The Book of Floating‘. It has been compared to many ‘laboristic’ relaxation methods including Yoga and acupuncture. 

There is a notebook of floater’s comments, a visitors book in the lounge at the clinic. Every comment is positive. Most people are there to solve personal problems and seem to want to apply mystical meaning to the amazing results. That’s not surprising off course when their bloodstreams are getting a rush of natural brain produced opiates.

I found myself holding back from conclusions, but was keenly looking forward to moving beyond release of tension and balancing myself, to getting creative with the tank and finding new ways to benefit from sensory deprivation. 

I subsequently did that and had all sorts of experiences and experiments that you can read about in future blogs about these awesome tanks. Bookmark or subscribe to this blog to find out more. If it’s boring you to tears, sorry, this is my personal soapbox and like the woman who was offended by the 2 minute song, based on the doppler effect, that I performed in one of my sets at the Parnell Rose Festival many years ago, called What I Like About Reefton. She stood up and said ‘That’s not very nice” and left her seat in the audience. If you want other types of blogs feel free to visit one of my other blogs like The Future Diaries , Location Is Everywhere , First Home Buyers Training or SoLoMo Consulting.

 

My Latest Float at Float Culture and my Second Ever Float in 1987


Float 5So yesterday I had another float and massage at Float Culture. My back pain from my injury back in April is still hovering around 6-7/10 most of the time and I was so looking forward to the zero gravity and a great massage from Kim.

I had booked the Cosmic Room, which is a newer float tank, which instead of being a pod like the one I showed a photo of in my last blog, which was also cool, this one is more like an Alice in Wonderland meets Dr Who.

What is really cool about it is that while it is still a floating tank, you enter through a door and it is high enough to stand in, which is great when your time is up and you want to stretch out. I can’t say one is better than the other, when you are in the dark in total silence, floating on a silky nothing, it is really irrelevant. It’s also easier if you have a physical injury in regards to getting in and out.

Float 2When you come out after your float, the atmosphere is pretty cool. Bright colours and a picture of a galaxy awaits your heightened senses, especially if your body produces endorphins, which mine isn’t good at since my cancer treatment, along with low cortisol and virtually no adrenaline, I don’t experience the mental natural high that you will, but there are so many benefits from floating that it’s no longer an issue for me. A lot of cancer patients float. Relaxing when life is tough isn’t easy, but here you have no choice.

I think I’ll turn this into two blogs because the next one is going to be quite long and possibly boring unless you really want to know more about the floating experience in detail. Being a geek, I did.

When you have been in chronic pain for 6 months and any time you are awake, gravity wants to push your vertebrae together and you are constantly dopy from pain medications, being in an environment like this is bliss. I was pain free for most of the day yesterday and what you might take for granted (just feeling physically normal) was wonderful for me.

I met, Anton the owner of Float Culture and we had a great chat with him and one of his team about how there is a resurgence of interest in floating and sensory deprivation, some of the history of the origin of sensory deprivation tanks. More of that perhaps in another blog, but for now I just want to say:

  1. Whether you are physically or emotionally stressed, injured, tired or just want to try something new, I strongly recommend going for a float at Float Culture in Grafton.
  2. If you are totally relaxed, life is great, and you just want to try something new, refer to 1. You don’t have to be suffering in any way to get a benefit from it. The experience will still be amazing.
  3. Go with a friend, they have several floating rooms. But you might need to book a few days ahead. They have an app and you can also pay a subscription and get better pricing if you go regularly and even free passes for friends. One or two lucky people who talk to me nicely, might be able to get one of those.
  4. Have a float followed by a massage. Imagine having a great massage when you are already totally relaxed. If you’re thinking about a day spa and want to try something new. Do this.
  5. Tell them Luigi sent you. I want them to know that I am recommending them because I want them to do well. There have been some years where there hasn’t been a float centre in Auckland, which was frustrating.
  6. 6. Just do it. Make a booking today. If you’re not totally convinced, read some of these testimonials from other floaters.

Blogfade and a Back Injury


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!

IMG_2290

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.

back injuryI’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.

Buying a House Final Cover ArtSo 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 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.