Life List #2 Record an EP and Video of my Songs about my Cancer Journey


I know you are a caring person wanting to make a difference like me, or you wouldn’t be reading this blog. I’m looking for advice and assistance on this project and I want to gift the results to the Cancer Society so that many people can benefit from it.

Music is a great healer and I used it as one of the tools that helped me and continues to help me through my journey. When I first was told “You Have Cancer” and got past the initial shock, I watched shows like The Voice and saw the stories of people who had turned horrific times in their lives to good purpose, wondering what did it take for me to do something positive and values driven.

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Where we leave our clothes when we go in for radiation treatment

I decided I wanted to do something too, which started with setting up the Facebook page Musicians with Cancer and other Maladies, I also wanted to try to do something really positive for other cancer patients and their families and friends.

 

So my Life List goal #2 is to complete an EP and music videos to help tell the story of my journey in terms of a cancer patient that may help other people relate to this horrible illness.

It’s 24/7, it’s scary and in many cases results in anguish, fear, depression, pain and death. The story isn’t unique, it applies to other conditions too like dementia.

Last night I watched the movie ‘Glen Campbell I’ll Be Me’ on TV and had tears in my eyes throughout the whole movie and my heart goes out to people suffering from dementia, which our family is also dealing with.

One of my songs for the EP is called “Who Stole My Words” which was about an experience I wrote about recently about falling out of an ocean kayak and due to my condition wasn’t able to come up with simple words like current and tide after I swam it to shore, not having the strength to get back in because I am not producing cortisol (i.e. no adrenalin). For a wordsmith, not being able to recall simple words is pretty scary.

So my challenge is that I need to fund this work and then make it available at no cost to people who are going through the same experience, because even with insurance, having cancer is very expensive and many people have to sell their homes or spend their life saving to help pay for their treatment or even to travel for treatment if they don’t live in a town where it is available. We had to spend a 5 figure sum to top up the gap for my treatment to date, so I know what it’s like. So I’d like to gift the album / video to the Cancer Society when it is complete.

I’m going to need additional musicians, possibly a backing choir for one of the songs, a videographer, editor and more people to help me. I’m going to need a studio, a sound engineer, a cast of several people and then there’s production and distribution. It’s pretty scary.

I’m keen for advice and help. First of all, where do I go for money? I’m thinking about whether to use New Zealand’s ‘Give a Little’ service. To raise funds because this is a charitable exercise. The finished product will be gifted to the Cancer Society and anyone who can benefit from it for free. There won’t be any profits.

Then I need a bit of a team to help me make this happen. Can you help with advice, or would you like to join the team? I can write the songs and I want to perform them with various artists, but that’s about the limit of my expertise.

So will you help? I need people and I need advice. You can contact me via Twitter Facebook by joining the group Musicians with Cancer and other Maladies, LinkedIn or Email.

 

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.

Who Is Buying Your Personal Information and the Internet of Things?


Who owns your personal information? Who gives companies the right to collect data about you, your family, your friends, your activities, where you live, what you eat, drink, your health, how you travel? Somewhere along the line you probably did, because you didn’t read, or understand the fine print when you signed up for an application, an email newsletter, a loyalty card, or you aren’t worried about your privacy.

There has been much talk about the NSA, and big data monitoring systems in most countries around the world designed to protect us all from terrorism. There has been a lot of talk about how privacy is being eroded with social media. Many of us have the philosophy that if we don’t do anything wrong, we have nothing to hide. But who else is collecting, buying and selling personal information about you?

FuturistA recent story in The Futurist called ‘Connecting with our Connected World captured my attention, particularly when it outlined, from a Wall Street Journal article,  apparently fairly common knowledge, that many retail stores track personal shopping habits using loyalty cards and then resell the data to marketers. The Wall Street Journal article ‘confirmed’ that this same data is now being purchased by insurance companies for the purpose of setting premiums and investigating claims.

With the Internet of Things (IoT), we are now being encouraged to buy fridges with built in bar code readers and wireless connectivity, so that we can scan items we use and feed them to our shopping list. Many of us now have grocery applications, such as the Countdown app, which I have blogged about before in my SoLoMo Consulting blog.These apps monitor what you buy, suggest specials, recipes and even navigate you up and down the aisles of your nearest supermarket so you don’t have to backtrack for things you forgot.

As Richard Yonck of Intelligent Future LLC in Seattle points out in The Futurist, “the rate at which a household consumes sugar, salt, tobacco and alcohol would potentially be an open book.” What could your health insurer infer from that?

It names them

It names them

Combine the information from your mobile apps that know your location, where you have given permission (which is probably half of the apps you use today), your climate control, light controls (that suggest you might be home, or not), fitness apps, social media (freely searchable with tools like Facebook Graph like the example which names people who like Edam cheese,) the direction Google and Apple are heading, to be able to predict what services you may want next based on your context, profile, time and location, your life is an open book today.

The problem with all this big data that we are ‘willingly’ sharing, is that we really don’t know what we are agreeing to or what the data is being used for. I don’t believe we have adequate laws nationally or internationally to protect us from abuse of this data by any agency, business, government department, insurance company, utility company, finance company, the list is infinite.

According to a story in The Public Herald it’s pretty much a free for all. For example they say:

  • Experion sells data updated weekly on new parents, new homeowners and other new event life triggers.
  • Have a read of what information Epsilon sells in this PDF. Who reads Science Fiction novels? Ever wondered why your phone keeps ringing with charities asking for donations? They buy lists.
  • Back to the Public Herald which says that Disney sells data including who bought what, the age and gender of the children, age and occupation of the people who purchased from them and more.

These are just scratching the surface. It isn’t necessarily all bad, the problem is that there doesn’t appear to be any authority tracking who shares what information with whom. The issues come down to informed consent. When you sign a form, enter a competition online with an attractive prize and you click, ‘yes, you can share my information with partners who may have items of interest to me’ perhaps because you think you might have a higher chance of winning the prize, you are losing control of your data.

There are laws designed to protect us from spam, but we often sign away rights without understanding the implications. Companies selling our data will argue that they have our approval to use and share our information. The flow of data will become so convoluted that it will become impossible to know who has what. Big Data companies will consolidate this data also with our ‘implied’ approval.

Governments need to be thinking about this now, if it is not already too late. Of course they arguably need the data as well in order to provide quality health, education and other services, including planning future smart cities. They need as much data as possible, although they don’t in many cases need the granular level down to individual people.

So as a footnote, think about all the cool Internet of Things you are buying over the next couple of years, like exercise devices, remote controlled security cameras and home access, climate control, sleep and snoring monitors, lighting, car telematics, electronic ticketing for public transport and much more, weigh up the cool with potential risk and consider that if legitimate organizations can access your data, so potentially can people wanting to commit crimes. It is already known that burglars steal product to order based on what they find on social media apps like Facebook (had a great weekend on the jet ski and now I’m off to Fiji for a couple of weeks and I’m putting the dogs in a kennel).

The hospital is the best place to be when you are sick, or is it?


Lately there have been a spate of stories about medical misadventure in the news, focussed on hospitals in New Zealand. Tales of drugs being given to the wrong patient, the wrong limb being operated on, things left behind inside the body after the wound has been stitched and lots more. Stories like Mistakes Kill 40 and Death Tally have been around for years.

In my own personal experience I was once prescribed an antibiotic and an antihystamine where the medical documentation stated that they should not be used in combination. The consequence was a major long term allergic reaction. My father in law who has a lanryngectomy has suffered from pneumonia several times as a consequence, not a reason, of being admitted to hospital for other problems.

For years we have had stories of people waiting in corridors in hospital Accident & Emergency areas because there were insufficient beds in the wards for them, even though they had been admitted. Each time one of these stories come out, the hospital spokespeople make out that it is an isolated incident due to a suddent spate of health problems caused by weather or other factors outside their control. Funny then that each time I have visited A&E with various family members over the last couple of years, I’ve had the same experience, summer and winter. For example last year my daughter suffered what eventually was diagnosed as a relapse of glandular fever. She was instantly admitted to the hospital by agreement between an A & E clinic and the hospital. I got her to the hospital around 5 p.m. on a Saturday afternoon and she got to see a doctor at 1:30 the following morning. I assure you I can quote many more cases with the same results from personal, not anecdotal experience.

My younger daughter was a blue baby and had regular visits to hospital for that and as she got older for various injuries from her sport of gymnastics. As a child a common occurence was that they could not find her file, even for appointments scheduled a week or more in advance.

So what’s my problem with that, other than as a taxpayer and concerned citizen? It’s that they have had solutions available for many years that cost dramatically less than the consequences of not having them. I know because I presented many of those tools and solutions to them.

First there is a simple concept of bar coding or using RFID tags to identify and locate files and other plant. This is everything from patient files (even though a lot of information is digitised, it generally isn’t available to registrars and other staff on demand in the wards or at the bedside) to critical equipment. I’ve heard of operations being cancelled or postponed because equipment had been borrowed from operating theatres and not returned.

So what was my solution? Very simple. Every patient folder has a bar code on it, which identifies the patient, their national health code etc. Each staff member has a bar code on their ID card. A bar code reader can be placed at the entrance to all key areas and as critical documents or plant leaves an area, it is scanned and the person removing it scans their identity and when it arrives at the next location, it is again scanned. Now a central data register knows where each file is, where each heart monitor or other item of plant is. Imagine the amount of time and pain that could be saved and avoided!

Then there is the very common problem of people being given drugs they are allergic to. I introduced 2D and 3D barcode readers into New Zealand many years ago, through an agency I managed with a well respected medical technology brand, Welch Allyn. The conept of these bar codes which are now (12 years later) starting to appear on patients bracelets, is that the bar codes can contain large volumes of digital data including crucial information such as allergies, their condition, their blood type and much more, without having to resort to a central database. Anyone that uses a computer, especially attached to a network, knows that its integrity and availability can’t be relied on.

So, at the bedside, I recommended a protocol each time drugs were administered, that the bar code be read with a small handheld scanner with a display, or built into a small handheld computer, and critical information could be confirmed before blood or drugs were administered. It would also ensure that it was clear that it was the right leg or appendage that was causing problems. By using a drug database, which can reside in a Palm sized computer, an alert would be delivered instantly if drugs that are dangerous when taken at the same time might be administered.

This is not a small problem and it is not a local problem, but it seems that only a few hospitals spend the money on using this technology which is readily available. It is usually hospitals that are attached to universities or med schools that invest in the technology. But it isn’t expensive and the cost of not using it is much greater. In Australia for example according to the Sydney Morning Herald, between 85,000 and 115,000 people over the age of 65 are admitted to hospital EACH YEAR due to adverse effects of their medication. And that’s the tip of the iceburg. What about those under 65, but of coursewith the older ones these problems are often fatal. Google in your country and you will find countless stories. This can so easily be avoided.

I’ve often wondered what has to happen before the government steps in. How many New Zealanders and people around the world have to die because of ‘accidents’ that could have been avoided. What is the cost of each one, or even the prolonged treatment of people who’s recovery from illness is hindered due to these problems. The solution is far cheaper than not doing something about it. I thought that perhaps if the family of an MP got caught i situations like this, that then maybe the Minister or others would do something about it, but I suspect that these people would not find themselves in public hospitals where cost restraints are more important than patient’s health and care.

I’m lucky that I can make a choice and I do have a couple of minor procedures I need to undergo soon. I can assure you, I will be using my medical insurance and going private.

But tell me please, what does it take. What are you going to do nect time you take one of your friends or family to hospital and they say take a number and we will see you as soon as possible. When you ask how soon, they tell you “Maybe 2 or 3 hours, because one of our registrars is off sick” and in ‘2 or 3 hours’ they tell you “another 2 or 3 hours because there has been a major car accident that was unexpected”. Are accidents ever expected? How come tow trucks and ambulance organisations know that there are certain spots at certain times of day or night where they should be waiting because an accident is going to happen, but hospitals don’t expect it. Goodness me, it’s 11 p.m. on Friday night and it’s raining. I guess there is no reason for the hospital to expect one out of a million people to cause an accident due to drunk driving is there?

I’m pissed off. This is the 21st century. I don’t live in the 3rd world, we have a modestly affluent society, but we can’t cater to a growing population? I shudder to consider what it’s going to be like in the next 30 years as the baby boomers get older and need more medical assistance because those that don’t succumb to medical misadventure or die in the waiting rooms. The hospitals might still be saying that they were caught by surprise with the extra people who succumbed to the flu this winter.

People are so forgiving. They say the staff did their best under the conditions they have to work in. I don’t disagree, I have utmost respect for the doctors, nurses, orderlies, domestics and everyone else who make the hospitals run, despite their masters. But why should they have to, shouldn’t health be one of our highest priorities?

Now throughout all this I have been talking about public hospitals funded by the state, by our taxes. I have a couple of minor surgeries coming up and guess what, I won’t be sitting in a waiting list for 2 years and then find myself being bumped after having starved myself overnight because they needed their resources for an unexpected accident. I’ll be going private. No I’m not wealthy, but I pay my medical insurance as I have since I was 18 or so and I’m going to take advantage of it.

Anyway, is hospital the best place to go when you are sick? I don’t think so.