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. Since I wrote this blog, I now have a Facebook group called Musicians with Cancer and Other Maladies. Please check it out and share the word.

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

 

Christchurch Cancer Patient Denied Test by TWO GP’s


 

After all the effort that the Cancer Society commits to educating people about the importance of catching cancer early, two doctors telling a patient that he didn’t need tests, as told in Stuff a couple of days ago amounts to malpractice in my humble opinion.

There was a comment about a GP who might have felt uncomfortable with doing a DRE, I’m not comfortable having one and it’s a level of relationship I never planned to have with mt GP. That wasn’t what raised the alarm bells for my cancer, it was the fact that rather than fluctuating as normal, my PSA levels from a tiny little blood test, had increased consecutively over 4 tests.

All credit to my GP because I was still within what is considered normal levels, however biopsies found 3 then 5 tumors.

Mercy ScannerI’ve since had radiation treatment for 8 weeks and am now on hormone treatment ad my latest test showed a small improvement for the first time.

EarlyMy Relay For Life team is called the Early Birds, because if we hadn’t found them then, I would probably be in a similar condition to the person in this story. Now I have the possibility of a full recovery. At the pace the multiple biopsies showed the tumors were growing, un-diagnosed, I would have been facing a potential death sentence.

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I know a lot of people don’t like the idea of a finger up their jack-see but all I had to start with was a PSA blood test that takes about a minute at your local test lab.

To the doctors, I say read your journals, attend your local local GP group meetings and have at least one person in your practice that is up to date with Prostate Cancer. For the rest of you mortals, did you know it’s BLUE September? The Cancer Societies on many countries around the world are running events this month. Find the info for your country here. I’m going to a Poker Night at Sky City Casino. I used to go to a tournament every month but these days I am too fatigued and generally fall asleep at around 7:30 every night, but I’ve told my boss that if I do any good I will be sleeping in the following day:)

Don’t freak out about getting tested. You can just go for the PSA test for starters if you don’t have any other problems. Do get the test, BUT:

Sort out your insurance before you get tested if you have never been tested. 

When I told my insurance broker that I had been diagnosed with cancer, he said “Luigi, my friend, you are now un-insurable.” Imagine getting tested getting a positive result and not having health insurance. Even with health insurance we have had to top up the gap in terms of tens of thousands of dollars.

Bottom line, I choose life. I have a chance and in fact for the first time in 18 months my PSA levels have dropped 12%. Obviously I want 100%, but its the first positive sign towards recovery. If I had visited one of the GP’s that Graeme Pollard went to, my options (I don’t know anything about his prognosis) right now would probably be either prostectomy surgery (with high risk of nasty short and long term side effects) or hormone treatment at much higher doses than the pills I’m taking now.

I don’t know what our rights are in cases like this and it sounds like a GP can do and say what they like and not be held accountable.

Yes, there is a school of thought that it is better not to know. Sir Paul Holmes the renowned Kiwi broadcaster said on TV that he would rather not have known. I know my life expectancy is now longer than it would have been if I didn’t know and knowing has changed my attitude towards life. I want to enjoy it and am no longer thinking about what I might do if I save my pennies for when I retire at 70.

Here’s a couple of facts for a small country.

  • Around 3,000 men are diagnosed with prostate cancer in New Zealand a year. That’s 10 a day!
  • Around 600 men die in New Zealand from prostate cancer every year.
  • There is no miracle cure but research is happening at a fast rate and looking very positive.
  • Whilst we are a society that says (It won’t happen to me) 1 in 3 people in New Zealand will be diagnosed with some form of cancer in New Zealand.

Here’s an interesting little exercise. If you are catching up with your family or friends today. Play a little game. Put them in a line and get them each to consecutively call out 1,2,3. Every person who calls ‘3’ goes and stands on the other side of the room. Now tell them they have cancer, because we don’t have a choice over which one it is. If you wanted to make it interesting you could include all regular smokers. My father in law died from throat cancer from being taught how to smoke in the war and we believe another uncle has lung cancer from the habit he developed with free cigarettes while serving his country in Korea, but I digress.

If you are male, over the age of 50, get your insurances in order and go and tell your GP you want regular PSA tests, at least once a year. If he refuses, get a new GP that cares about you. Prostate Cancer is not a death warrant, especially if you get it early. Never knowing you have it, will very likely reduce your life expectancy. If you had a choice to live a bit longer, would you choose life?

Be an early bird.

 

A Cancer Meltdown


So a couple of weeks ago I felt like things were going OK. I had my cool car and whilst I was feeling really fatigued, I was coping. Then a pile of little things got the better of me. I was late with my tax (which I hate doing, because I normally do that at the end of the calendar year, when I was doing 8 weeks of radiation therapy and was too tired any other time. I’m between test results, so anxious about what the next result will be. My arm is really sore after taking the splint off my wrist from a thumb strain (which impacts on everything from using a mouse to playing guitar. Super busy at work and a number of other things, nothing that would be beyond the norm for any of us in isolation.

20160503_161554.jpgI had words with my wife, something that is very rare and after she left the music room, I lost the plot. I picked up my office chair and flung it at the floor breaking the base and ripping the carpet.

This was not good for our relationship and the following night I was away on business, which was probably s good thing to allow us to both cool down. It was totally on me and something I haven’t done since I was a teenager. I do not have an anger problem, it’s just one of the many emotions that you go through with grief and with cancer. Some people cry a lot (I only get emotional like that when giving speeches at weddings or when I’m watching an awesome concert). I might get slightly bloodshot in the eye when I’m passionate about something, but again that is when I’m happy.

So the following night I found myself in a hotel in Wellington after a 4:20AM start and a long working day. I sat in my hotel room looking out the window and pondering the meaning of life from about 5-7:00, went to bed. No dinner, no TV, a few SMS’s with my wife and slept for about 11 hours.

Bottom line, I really needed to let off steam. But I wasn’t finished and this is the good part. Right through summer when I usually write and play a lot of music, play a few gigs,  I couldn’t play, I had lost my mojo. Well after this exercise I got it back and over the last couple of weeks have written the backbone of a new song, which was the catharsis I needed.

Here’s what I’ve got  so far. It’s a country song, I really like country as a genre for telling stories. I hope to fine tune it enough over the next few week to start recording it, because I like the song as a song, not just a form of letting off steam.

If I Could Turn The Tables

Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

Verse 2

If I could turn the tables I’d unsay the words that I just said

I’d turn down the volume of the voices that keep crashing through my head

Sometimes I feel like I’m OK, then the doubts start to shiver down my back

I’ve got to climb out of this hole and find my way back.

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Verse 3

I’ve got a lot to live for and each day I add on to my bucket list

I have great friends and family, there are special dates that I don’t want to miss

Sometimes I just want to cry, sometimes I wonder what its like to die

Then I think of those I’d leave behind and find my way back

Bridge

Every day’s a gift

Every day’s a steal

You can’t be the driver

Unless you take the wheel

Take the wheel

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Repeat Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

-I’ll share a link once I’ve recorded it. It’s great to be back in writing mode and I hope I stay there. I’ve missed writing songs (other than my Pi project). I feel so much better having transferred my emotions into music.

I’ve been wanting to write songs about cancer to share, which might also help other people, be they the patients or friends and supporters. I have one other that I wrote but haven’t recorded yet, it’s more of a soul/reggae number which I wrote about losing my father in-law (also to cancer), but I thought I’d like to do a few covering different aspects.

Anyway, that’s me. Now I have to transcribe the song and publish it. If you’re still here, thanks for coming  on my journey with me.

 

Shuffling of Papers


image_4

HOPE

Yesterday I arrived at the Oncology office to see my specialist, confidently expecting good news. I thought that he would be telling me that my PSA had dropped to zero or thereabouts and we could start looking towards 6 monthly catch ups, despite the fact that the fatigue and frequent bathroom visits continued.

He shuffled the papers and took a little while, with a big confidence inspiring smile told me that not everyone gets over the radiation quickly. He reminded me that no one gets cured of cancer, the goal is to achieve remission.

I took confidence from his smile and asked him about my PSA levels. He had another look at the papers, frowned a little and then told me that they had increased by about 50%. He said that I am in the 5-10% of people who take 6-12 weeks to get over the radiation treatment, gave me a form for another PSA test and a script for more Ural and we arranged another appointment in 4 weeks.

So, not what I wanted to hear. I’m still digesting it and what it means. I need to take some action steps.

  1. I need to learn to pace myself at work and leisure. I’m not good at that. I’m at my best when I’m focused but when I get home I’m often asleep within an hour or less after walking in the door, even when I manage to get home early. Whatever I do one day impacts on the next.
  2. I need to drink more fluid. It was much easier when I was going to radiation for 8 weeks and had to drink my bottle of water before I got there.
  3. iPhone 145I’m starting to focus on Relay For Life and I hope you’ll join me in that, either supporting our team at Millenium on the 19th and 20th of March, either in person, or by making a $5 tax deductible donation Donation. $5 isn’t a big deal to any of us right, but I keep thinking what a difference we could make for people like myself if all of us gave $5. I’ve already used up the donations some of you have made with phone calls to the society, attending a support group (which costs money to run) and met people who get to stay at Daffodil Lodge for free because they don’t live in Auckland and it’s expensive to spend a couple of months here when you are getting treatment and not working.
  4. I need to see a podiatrist as I have a sore foot. I don’t expect to do 50km this year, that’s probably not consistent with pacing myself, but I don’t want to be cut short by a minor injury either:)
  5. As of this morning I’ve gone back on Pomi-T again. It didn’t help before, but I still have plenty and it can’t hurt.
  6. Focus on quality of life. Play my guitars more, write some more songs and have fun with my friends and family.
  7. Look forward to a better PSA result in 4 weeks time.

iPhone 274Thanks so much to you all for your support and positive vibes. It means a lot to me. I really am serious about the $5 donations. It may seem hardly worth the effort for the price of a regular flat white, but it truly is, both in lightening my spirit and in everyone giving a little, we actually give a lot. Can you do that for me? Don’t worry about the donations buttons for bigger amounts. I have so many connections, if each of us only gave that amount (which is tax deductible) it would add up to something meaningful for the Cancer Society, but each little one will also put a big smile on my dial and smiles generate endorphin which makes you feel good.

 

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


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.