I need a little help from my friends


Mercy ScannerSince I was told those words “YOU HAVE CANCER” I have been wondering how I could turn it into a positive. I’ve seen so many people on TV on shows like The Voice and they all have a story of troubles that they turned into amazing success stories.

It’s taken me two years to come up with a HAG. It’s not fully fleshed out yet and it is full of challenges and I’m hoping for my friends to help me out.

I’ve always considered myself a survivor, but I’ve struggled at times and often feel embarrassed when people suffering 100 times more than I am, try to make me feel better.

I’ve been reading an awesome (but huge as friends and fellow sufferers I have bought copies for) book called SuperBetter by Jane McGonigal which is all about using gamification to help yourself deal with chronic illness and trauma. Between that and two sensory deprivation floats over the last 2 days at FloatCulture in Auckland, I’ve come up with 4 ideas. I will flesh them out later, but I’m looking for a little help now and a lot in the future and I’m hoping you will find a way to join me.

Another Stretch in Iraq

  1. I am a singer songwriter, or at least I was before I got sick and I want to be again. Over the last 2 years I have struggled to play my guitars. I typically pick one up, play for a few minutes and put it down again. I struggle with chronic fatigue. In recent times I have often had to go back to bed during the day and even if I have slept most of the afternoon, I’m likely to be asleep again around 7:30-8PM. Here are some things I want to do:
    1. In about 9 months I want to do a gig somewhere with great acoustics, playing my originals (including new songs about dealing with cancer) with some backing from other musos.
    2. As per the SuperBetter program, I need 2 or 3 people (close friends) to check up on me and help me stay on track. That might be texting me or giving me a call each day and asking how my music is going to make sure that I stick with it, even if it’s only for five minutes.
  2. I’d like to help other musicians with cancer who feel the same way and would love to get back into their music but are struggling like I have. It might be that I can put together some sort of guidelines (everyone is different and it isn’t paint by numbers) based on my own experience, such that they can come up with their own model and get help from their friends to achieve the same results.
  3. If  we can achieve that, wouldn’t it be awesome if we could put together a gig/s of songwriters and musicians who have cancer or are in remission around New Zealand? Wouldn’t that be something amazing to aim for!
  4. I need a lot of help. At the end of this year I had most of the last 2 weeks off sick because of fatigue. I spent most of that time sleeping day and night. I need my job (both because I love it and because I need the income) but I’ve been struggling to front up. I need help putting together and maintaining a website or Facebook page to tell people about this initiative. Bottom line is it is going to be a struggle just for me to play every day (and keep my job), let alone grow this thing into something that will give energy and bring a spark back into people’s lives who are suffering and struggling just to get from one day to the next.

So what do you think? Is this a good idea? Do you know anyone who is a musician with cancer (or in remission) who has struggled like I have to motivate themselves and get back into it? When I have been able to play and write, like the song I wrote, which I blogged about here in a Cancer Meltdown,  it was extremely cathartic. Music is a healer.

I will be approaching a few close friends directly to assist me in my immediate journey to play every day. But for the other things I can do with a lot of help. Do you know songwriters and musicians with cancer? Do you know people who want to help them? Can you help in some way?

Can you please share this post with people who you think might be interested?

I’m going to try with a little help from my friends, actually a lot of friends if possible and friends of friends, because it’s 10 in the morning and I’m already tired. But I am going to play today.

Thanks for sticking with me. There is a lot of work to do and I can’t do most of it. We all know music is good medicine and can help drive a positive attitude. A lot of beating cancer is about attitude.

For now you can contact me through my blog. I don’t want to put my email address on here and attract phishers. Once I have a Facebook page for this project, we can communicate in one place.

Again, please share this so that we can help other people in a similar situation to me. Thanks a million.

 

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.

 

 

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.

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.