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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Early Birds 2018

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

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

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


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

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

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

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

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

My Big Project A Cancer Video EP, the Last Song

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

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

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

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

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

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

In 3 months I’ll know more, for sure

Pinch me am I dreaming? Please explain the meaning

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

The winter sun is crisp and clear,

I’ll write a list for 10 more years

Of things I want to do and see,

Things that mean the world and

Dare to dream, dare to dream

So much more for you and me

So much more that we can be

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

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

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

Cause there are many on our team

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

Dear to dream

Watch me lift my hands up high

Dear to dream

Reaching out to touch the sky

Dare to dream

Take off like a bird and fly

Can’t believe this feeling

Repeats after break with lead guitar and horn section

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

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

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

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

I’m in remission, Life List and moving forward


lava lavaSo I’ve just been told that I am in remission:) My first question was, what does that mean? I always thought it meant something like being cancer free, but my oncologist said that once you have cancer, you are never cancer free.

So what does it mean for me? For now, no more drugs and tests for 3 months (that’s the second lot of 3 months now) and that in itself is a big relief. I’m still getting my head around it.

I don’t want to write about my cancer as such other than a brief update and perhaps to help others on a similar journey. My fatigue is way better than it was and I am able to stay awake longer than I was, almost normal, although I still nod off if I am in an easy chair, but I am no longer fighting to stay awake at 6:30 PM, (every night) or playing Candy Crush to force myself to stay awake.

I do still tire easily, especially on long work days or trips, but it is getting easier.

RescueI am still not producing cortisol, which is really interesting when you are on a rollercoaster that suddenly races off at a great rate of knots and everyone around you screaming and you’re thinking “hmm this is entertaining”. Or lying upside down in an ocean kayak, in a current thinking “This is interesting, I suppose I should pull the ripcord on my sprayskirt and get out so I can breath”. But I am aware of where I am at and much more cautious when it comes to driving if I am tired, or not looking at my mobile while I walk on the footpath and especially crossing the street with so many red light runners (3 just yesterday as I was going to buy some sushi for lunch).

I meditate every night using the Headspace app, which has been very helpful, especially with sleep and the way I respond to situations. I’ve been doing a lot of work on my values and what is important to me, which leads me to my Life List.

I am listening to The Hidden Why podcast, by Leigh Martinuzzi frequently (amongst many others), which I recommend, he’s pretty good for an Aussie (sorry mate) and a prolific poster and traveller on the topic of Why, which is pretty much the key to everything, right?

Recently he interviewed Danny Dover who wrote The Minimalist Mindset, which I am currently reading. I got it for a minimalist cost on Amazon for Kindle, but I’m tempted to buy a hardcopy as well, because it is the sort of book you want to read with a real highlighter and Post-It Flags, rather than virtual ones, because they are easier to use. In fact I might buy a few copies to give away to friends.

national steelSo I’ve had a Bucket List which I revisited since I was told those three words ‘YOU HAVE CANCER’ and some of the things I wrote about were things I wanted to have, like a National resonator steel guitar, which really doesn’t matter to me, and a Corvette, which does.car

But what Danny did to help himself out of severe depression was create a Life List of 150 things he wanted to complete within a 10 year period and they are values focused and I was inspired to do that. So I officially started that list today and am part way through reading his book.

I’ll blog about the Life List separately because it will be part of my process and I hope it will help other people to focus on what matters to you rather than ‘stuff’ to have or own. I’m also going to work on it with my wife, although there will be things that matter to us and things that matter just to me, so there will be overlap.

It’s a shame that it takes something like having cancer to wake us up to put more effort into life, not that I haven’t put a lot of effort in, but there are many things I could have done better, and many different paths I may have chosen. The important thing is my focus on a future based on my values and I am very clear on what they are. So today on 8 August 2017, I am starting my 150 item Life List of things I want to complete by 7 August 2027.

I have started item 1 and if you want to know what it is, watch this space. It’s pretty cool IMHO.

Support for Cancer Sufferers and their Families


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Talking About Cancer


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

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

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

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

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

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

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

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

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

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

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

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

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