There’ll Be Days Like This


Damn this fatigue. Yesterday I got half way to work and turned around and drove home again feeling very guilty about the meeting I was supposed to be chairing and the work that’s piling up. Most of all being there for my teams in Auckland, Wellington and Christchurch.

When I got home and went to change out of my work clothes there was a Harvard Studies paper sitting in my wardrobe which I had been meaning to reread. I have reading material everywhere and my apologies to OCD people who like to have everything in its place. Its about delegation, which has been a focus for me, but one I need to focus on much more because reading the symptoms of someone who is not delegating enough, it could have had me as the cover boy. Having read that, I started planning for the next day.

Last night I went to the North Auckland Prostate Cancer Support Group for the first time. Unfortunately there were only 3 couples there. The organizers thought it might have been because of touch matches at the club next door who had not only taken all the parks around the field, but even had a truck parked across the disabled parking area.

I met two men with advanced cancer, both of whom were retired, both whose cancer had spread to other areas, one is terminal and one whose cancer is now undetectable, but still having hormone therapy to make sure it didn’t come back.

The main advice I got from them and their wives was to take things a moment and a day at a time. Another was the benefit of walking, they both walk between 6 and 10km a day. I need to find a way to get back to doing that.

I set the alarm for 6:20 and started waking up about 2AM, isn’t t funny that when you are the most tired, you can’t sleep at night but you can sit down at 10 in the morning and fall asleep. I decided I’m off to work this morning and am going to do a stock take. Get an idea of where the true priorities lie for the rest of the week and focus on what matters, which is mostly the people.

I showered, took some medication which I have for night time (no it doesn’t make you drowsy and won’t affect my work or driving, but it shows where my head’s at). I had Van Morrison in my head.

I’m looking forward to getting back to Day’s Like This.

When it’s not always raining there’ll be days like this
When there’s no one complaining there’ll be days like this
When everything falls into place like the flick of a switch
Well my mama told me there’ll be days like this
When you don’t need to worry there’ll be days like this
When no one’s in a hurry there’ll be days like this
When all the parts of the puzzle start to look like they fit
Then I must remember there’ll be days like this

 

I should be peaking today


That is, according to the medical law of averages, today should be the worst day of my side effects after 2 months of radiation treatment for my prostate cancer and on average after today I should start feeling better.

That’s awesome news and a day I’ve been waiting for, or in fact, tomorrow should be the better day. The main side effect I’m looking forward to losing, because medications don’t help, is the fatigue. I’m looking forward to being able to get through a normal day at the office, or a little work in the garden or going for a walk around a classic car show without feeling totally wasted the next day.

Hopefully I will fall within the average, because some people’s symptoms continue for a few months.

The good news: I don’t have to restrict my food and drink any more which is awesome. I don’t have to get up at 5:30AM for radiation any more. I only have to wait another 2 weeks for some indication of success from the treatment and I have awesome support from my friends, colleagues and family. Seriously, you guys have been amazing, with phone calls, places to stay for a rest, cards and kind words on social media.

image_2Now I just need the energy to start training for Relay For Life next month. We still have room for a couple of team members as a few have had to pull out and we’d love a few more donations. I have a mission to get all my Kiwi friends (because a $5 donation is tax deductible) to donate $5 to the Cancer Society through the link above.

I also challenge my male friends to get tested. You don’t have to get the digit, just a little blood test will do and remember, before you get the test, make sure your health and life insurances are in order. I am now uninsurable. That little bit of advice alone is worth $5 and makes me one of the cheapest consultant on the planet.

Support for Cancer Sufferers and their Families


I 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.

 

 

Prostate Cancer Radiation Treatment is Over


I finished my 37 days of treatment last week and it was an unusual experience, a little emotional almost like leaving a job. They told me I was a model patient, I had followed all the instructions about diet and exercise and only had to get off the table once over the two months (because of wind). The average I’m told is 6.

IMG_2086

The faces in the lounge were changing and the people I had started to get to know had moved on and like me will be waiting for news of successfully shrinking or obliterating tumors. I had my last walk past the electric aquarium designed to relax you as you walk to the table. IMG_3489

I thought about asking if I could take some photos while the giant machine was rotating around my body, but I decided I didn’t have the energy and the answer would probably be no, because you can’t move an inch while it is operating, or risk damaging healthy parts of your body. I won’t ever forget it anyway. Mercy Scanner

When I finished, they gave me a lovely card full of congratulations handwritten by a dozen or more of the staff I had come to know, goodwill messages and instructions not too work too hard. It was like leaving a job. Very touching. I can’t tell you how important it is to have good people looking after you, who really make an effort to get to know you and keep your spirits up, whilst prepping you, which can be intimidating and embarrassing.

IMG_2153So I was out of my lava-lava for the last time and off to see the nurse.

lava lava He told me that my side effects are going to peak in around two weeks. I got a form telling me that the tiredness Apparently despite taking a drug to reduce the may last up to a couple of months after the treatment, then I should start feeling my normal self again. There are other side effects that may develop several months or years later, but lets get rid of the cancer first!

We discussed that the drug I am taking that reduces the side effects like having to pee painfully every hour and having to go again 20 seconds after I thought I had finished, my blood pressure was fairly high. Kind of understandable given what my body is dealing with but a side effect of the drug is that it lowers your blood pressure. That’s a little bit of a worry because my GP is always telling me that my blood pressure is usually low and better than his. I’ve had the odd moment when I get up and get that blood gone from the brain wooziness, but I’ve learned to get up more gently. It wouldn’t do to find myself on the floor in the middle of a business meeting!

He told me to take it easy with my diet because my body has now adjusted to the changes and I will suffer if I try to go back to everyday food too quickly. He was right, but that’s another story.

 

 

Je Suis Fatigue – Day 25 of Radiation Therapy


I haven’t posted about my cancer for a few days, partly because it would be a boring read and partly because I am fatigued. I knew that the radiation would make me tired, but this is something different and I’ve struggled to find the words to define it.

Fortunately the Cancer Society has information online that helps. It describes it as an overwhelming tiredness (physical and emotional) not relieved by rest or sleep. That pretty much encapsulates how I feel at present

It also says that while the reason is unknown, it may be as the cancer cells die they release waste products. Your liver and kidneys have to work harder to get rid of these toxins, using valuable energy. I like that description because I can then take it that these tumors are being killed and I am beating the cancer.

It also says that the fatigue usually lasts 3-4 weeks after treatment but can continue to last for several months. I’m hoping that’s not the case given that I’m back at work on Monday.

alex harry wedding car

The Groom’s Bridal Car

So a couple of days ago I went to an awesome wedding in Tawharanui, a stunning location north of Auckland. I had done some research for a short speech I wanted to give. A little humor and a lot of love for the couple, the bride having been part of our extended family since she was 2 years old.

I couldn’t do it, emotionally I didn’t feel capable of doing something that I am skilled at, that I wanted to do, that I have done hundreds of times at conferences, training courses, weddings, funerals, birthdays and other events all over the world and I couldn’t do it in a place where I was surrounded by family and friends.

It was a wonderful wedding, but I was so fatigued I could barely hold a conversation. The following day, yesterday, was worse. Because we drove home after the wedding, I had arranged to have my radiation treatment moved from 07:30 to 13:30.

That was a mistake, it’s hard enough having a moderately full bladder and empty bowel first thing in the morning, but doing that early in the afternoon, plus a delay before I got my turn was a nightmare. My bladder was fit to bursting before I was called up, so I had to void a little and was about to get rid of even more a second time when they finally called my name.

I lay on the table praying that I would be able to last the amount of time it takes to get me in the right position, do a CT Scan, make minor adjustments and then start the radiation. It seemed to take forever and I was on the verge of jumping off several times.

The strain and pain of holding it back had me fighting an enormous battle between my dignity and my bladder control and I was looking for a button to call a nurse and call it off, but there wasn’t one.

I wasn’t going to risk getting off the table while the photon beams were radiating and risk damaging other parts of my body, but the intensity of holding my bladder was enough to give me a massive headache. When they came in to get me off the table I apologized and said “Sorry I have to run.” I meant it literally. I’m glad I still have that control!

Sorry about the detail, I’ve avoided talking about side effects. Let’s just say that going to the bathroom is not the satisfying ritual it used to be, but on this occasion the relief outweighed the negative aspects. I never thought I’d be blogging about going to the toilet, but this process has lowered my inhibitions.

I had a nurses appointment afterwards and he gave me a urine test to take home (given that I had just saved my bladder from bursting) in the unlikely event of infection and recommended I go home to bed. By the time I got to the car, I was busting again! So I went back and did the test and it was as if I hadn’t been before. It was like letting the air out of a fully blown up balloon!

Other notes:

  • Relay For Life rang and asked if I was prepared to do an interview in a local paper about why I am doing the event again. The answer was yes, although I feel that is a lot more public than my blog and social media. But, given that 7 people have been motivated by my story to get tested, that might otherwise have procrastinated and might not have caught the cancer early like I did, if I can help save one person from a serious condition, it’s got to be worthwhile.
  • songMusic. I’ve started reworking a song I wrote for a friend who died of cancer a few years ago and making it more generic. I’ve been waiting for my muse to come back. It’s good to get back into it again.
  • I’m hoping to get some more donations for Relay For Life. It’s a real struggle. I know it is still a couple of month’s away. I’m keen for suggestions from anyone as to how I can encourage people to part with $5. It’s tax deductible so you even get some of it back. If you can find the time, I would so appreciate that gesture. The Cancer Society are a charity, the first people I called for help and advice once I knew I had cancer and they get no funding from Government. We also have room for a few more members on the relay team if you can handle taking turns walking around a track for 24 hours. It really is a fun and moving event.

If you’re still here, thanks for supporting me on this journey. I am feeling a bit better today, hence the almost 1,000 words, but also looking forward to a quiet day inside while the storm rages outside. Wishing you all a wonderful weekend. I’m now going to reword the speech I didn’t give into a letter that I can give to the newly married couple.

Twice in one day! My journey with photons.


IMG_2184 (2)As I was sipping my pleasantly flavored urinary alkalinizer this morning,  I was thinking back to yesterday. Because I had a few radiation free days over Christmas, I had to go in to the hospital twice for my photon blast. Sounds a bit like a cocktail drink doesn’t it. Maybe I should invent one when I’m better. It’ll be a purple drink that will knock your socks off.

When I got home after the second bout I was planning on playing guitar or something but I didn’t really have the energy to do anything.

It’s an odd feeling. I was expecting to feel tired and I did, but its a different type of tired. The radiologist defined it quite astutely this morning, if not a little close to the subject of attention, when she said “A lot of men find themselves feeling knackered when they have two doses in one day.”

In my part of the world knackers are slang for testicles if I need to be any clearer, but in this sense it relates to the exhausted state at which horses or other livestock are no longer of any use to their owners and are sent to the knackers yard to be rendered into pet food or other items of greater usefulness.

IMG_2154 (2) Anyway, I was feeling a little more energetic as I got changed this morning for day 19 of my treatment. Back in the groove as it were, getting into my lava lava, chatting with others in the waiting room and then heading for LA 3 to watch the purple light on the radiation machine spin around my torso.

I feel like I should be doing something like walking, or painting the fence. But I might have to be a bit like rally driver Possum Bourne’s uncle who I used to work with at Tait Electronics. He said to me that whenever he felt like going for a run, he would lie down until the feeling passed.

I have written a speech this morning, which I hope to be allowed to give at a dear friend’s wedding next week, so I haven’t totally wasted the day.

Anyway, I hope you’ve all had a great Christmas and wish you safe travels if you are heading away to celebrate New Year’s Eve. I have 3 days off treatment and will be joining the throng heading for the winter-less north, although I have been receiving weather forecast emails containing severe rain warnings. Not a problem though, I’ll have a guitar or two with me and good company. I wrote the song Raglan Rain on just such a trip. Maybe my muse will come with me.

Prostate Cancer Radiation Day 11


carparkI 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.

XmasOff 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.

CaptureI’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.