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

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.

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.

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.

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 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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Prostate Cancer Radiation Day 11

I was sitting in the car park having finally remembered both my water and my star chart on the same day (I have today off!) for my 11th day of external beam radiation treatment and I was thinking, ‘why can’t they just use a light sabre, there seem to be an awful lot of them around this year’. I’m not sure I’d want to DIY though, I might lose more of my anatomy than intended.

It is now becoming pretty routine. Sign in, confirm my appointment for tomorrow. Do I still want my nurse’s appointment? Yes because the odd little side effect is starting to show and I want to discuss them. I now have some sample sachets of Ural which may help improve my flow, so I don’t have to stand there reading my emails while I wait, despite my bladder telling me I’m busting. Makes me wonder if the guy standing next to me adjusting his tie also has prostate cancer. I didn’t want to turn around and ask in case the Ural suddenly started working!

I started off listening to audio books on the way in, that was my plan, but I found that I was thinking so much that I couldn’t remember what I’d heard so the quantum physics and cosmic strings of big data as applied to Sociology 301 might have to wait until later in the day.

Maybe it’s the lack of coffee at 6 in the morning. A diuretic is not a good look when you’re trying to arrive and hang on to a semi full bladder.

Now it’s Spotify. I listen to new music Tuesday in the car until new music Friday comes along, in between I listen to starred and radio likes from starred. If you use Spotify, you’ll know what I’m talking about.

Off downstairs, clothes off, lava lava on, clothes in the bag, bag on a shelf and look; they have Christmas decorations. I must thank them for making the effort. When I go in on Sunday, so do they. The little things matter.

I get to the circle of chairs around the table in the waiting lounge and greet my fellow travelers, all on our different crusades, fighting off evil unwanted invaders.

I’ve noticed something about the discussion today. There isn’t much. One of the patients has his wife with him for support. That stops people asking questions about urine flows and side effects, like the guy with throat cancer who can’t taste or smell. Fortunately for him that isn’t permanent.

There is definitely  a gender element to cancer chat. I am sure that when a group of women are together here on their own, they will be just as frank and open as our groups of men are when we are on our own. But neither group wants to talk about the side effects, the after effects or the fears they are burdened with in a mixed group.

I still find it a little daunting talking to the nurses and radiotherapists about what’s happening. I don’t want to sound like I’m complaining and my natural answer when anyone asks me how I am is to reply with “great!” And when I give them a big grin (as much as anyone gets a big grin from me) I get a little rush of endorphin’s and feel better anyway. What they want to know is of course, do you have any problems that we need to know about; because we do need to know.

So today I slept in which was great, except that I woke up at 2AM with a mind full of work and other things, so I took half a sleeping pill and woke up again around 8.

I’m definitely starting to get tired. I had the house to myself last night and straight after dinner I went to my music room. I picked up my beautiful old Takamine and my arms were like lead and so was my brain. After 15 minutes I decided that wasn’t happening. I’m working on some old and new material and really wanted to get into it, especially after attending an early show of The Lady Killers on Thursday night, who were awesome as usual. I would have taken a photo, but Jackie made a comment to the guy in row one being able to look straight up her nose, well I was in row 2 and would have got her epiglottis or tonsils (if she still has them).

We agreed that next time we go to Q Theater to go for row 4! These ladies are great medicine I have to say. If you get a chance, go see them (they appear to be avoiding family Christmases by gigging almost every night) they are fantastic and their commitment to every performance is as if it is the most important one they will ever do. Their talent is amazing and the strength in their voices remains as good or better than ever.

Anyway, I have anther blog to write before engaging in some quality family time and then home, early to bed for a Sunday visit for some more photons. At least the worst of the traffic is over for the year, so tomorrow I can sleep in till 6:)

If you’re still hear, I have had amazing support from friends, family, my social network and I am very grateful for it. I am also delighted that some of you have decided to get prostate tests, or other lumps that you think are nothing. One of the guys I chat with in the morning had a little lump on his throat that grew and his doctor told him not to worry about it. I lost a dear friend a few years ago who had a little lump on his face. It took his life.

I welcome your comments on my blog and when it comes to Christmas and presents, the best present of all (except for new guitars and a Corvette) is just being there and I really appreciate those of you who have been there for me. I’m also feeling for other friends at the moment who have much worse troubles than I do. It’s all relative. Do something nice for someone today, give them a smile, a hug, let them know you care. It costs nothing.