Humor is the Best Medicine


Check out the great guitar playing on this video. As to the song, it reminds me of the week when I read the definitive book on prostate cancer. I had to but wish I hadn’t. Great lyrics though.

Remember Reader’s Digest’s Humor is the Best Medicine? Yesterday at work a guy came up to me and said, I can’t help you with your cancer, but I can make you laugh, would you like that. I said I would and he proceeded to tell me some corny jokes and I felt better for it.

I’ve written a couple of songs about my cancer journey so far. I haven’t got the energy to record them yet, but watch this space. Music is very much a way of dealing with issues, whether you are a listener, a songwriter or composer. It is cathartic.

As to my journey, in short, I had to stop taking my drugs because I stopped producing enough cortisol which along with the cancer drugs caused fatigue which has had me sleeping very long hours and having to take time off work. I am now also anaemic and they can’t tell me why. It’s not iron, it’s to do with my red blood cells. I also became intolerant of fructose and lactose, which doesn’t give you a great number of tasty diet options.

Anyway, my oncologist told me around Christmas to stop taking the cancer drugs until we figure out what else is going on and referred me to an endocrinologist. When they didn’t ring me, I rang them and they said “The soonest we can see you is 10th of March!”. So I’m thinking, no cancer drugs, all I am really good at right now is sleeping and I feel even more tired when I wake up than when I lay down and I have to wait nearly 3 months to see someone while those tumors could start growing again. So I rang the clinic every day or two and yesterday managed to get a cancellation.

So on Monday I will go and fill another bunch of bottles with blood and wait for Greenlane Hospital to ring me to arrange a test that sounds a bit like hooking me up to a line and shooting adrenaline down it to see what happens, because my fight or flight has become sleep or creep.

I’m very grateful that something is happening and hoping for some answers and feeling embarrassed and humbled when people far worse off than I am give me words of encouragement .

Meanwhile I am also looking forward to Relay For Life in March. I don’t know how much energy I will have, but I’ll be doing as much of the 18 hour walk with team Early Birds as I can at the Millennium Centre on the North Shore on 25th and 26th of March. I am so grateful to my family and friends for organising the team, tents, clothing and everything because I don’t have the energy for it. Of course they aren’t just doing it for me, we all have friends and family that are fighting or lost the battle with cancer and each person in the team is there for a bunch of people. We wear their names on our clothing.

This is raising funds for cancer research (and NZ is a world leader) where every single cent goes to the research, nothing goes to administration and everyone involved volunteers or pays for the privilege of being there. Buddy, if you can spare a dime, maybe $5, please go to this page. If you live in New Zealand, even your $5 is tax deductible, so the charity gets the lot and you get some back. That’s pretty cool right?

EarlySo here’s the thing. One in three people in New Zealand will get cancer in their lives.

Let’s try a little game:

Take everyone in your office or flat or home and line them up. Get each person to call out a number, 1, 2 and 3. Then get all the 3’s to stand on one side of the room and the others to face them.

Stand there for 3 minutes and look at each other and think about what it would be like if those 3 people had to battle cancer and how that would make you feel. Then put yourselves on their side of the room and think about how it felt when the doctor said “You have cancer”.

iphone-140Then think about what if you could help reduce that number. Relay For Life is helping fund some leading edge research such as treating cancer like a virus. Imagine being able to take something like an antibiotic and the tumors just magically get flushed out of your system. Those people are being financially supported by you encouraging us to walk in circles throughout the night.

 

I got Chastised for Owning a V8 Last Week


I felt like I was being made out to be a bad person and it shocked me. I’ve always considered myself a green person. I have planted tens of thousands of trees, lobbied for feed-in tariffs to make it attractive and economical to get the masses to install solar power. I’ve encouraged ride-share systems and spend a lot of my working time encouraging people to use public transport and to reduce the impact of congestion. I point out to people when their car or truck is blowing soot from the exhaust pipe and if I pick up rubbish that others have thoughtlessly discarded.

Since I was little I always loved Corvettes. As a boy i would watch them on TV and see the odd one in real life. As an adult I had a business associate who owned one while I just had a replica model.

20160611_175607 (2).jpgThe colleague who castigated me used to work for a car manufacturer and has a passion for motor vehicles and motor sport and maybe he was just envious of me that I have a sports car, but it made me feel bad. It shook me, perhaps because the car is an indulgence.

I didn’t bother telling him that I have cancer and that it made me decide to do a few things for myself and my family that were on my bucket list, things that like most of the people I know, I never expected to achieve. Anyway, now when I drive my 350 Chevrolet, people give me the thumbs up, kids stop and look at it as  drive past as I did so many times when I was little and I see big grins light up on their faces, just like I did. People compliment it and I feel like they feel happy for me in gas stations. They don’t know my circumstances and might think I’m rich. I’m not. The only new vehicle I have owned in my entire life was a no gear pushbike.

I have my dream car and I spend as much time cleaning it as driving it, which I find therapeutic (it helps me take my mind off my next lot of tests), while listening to business coaching, self improvement and music podcasts. It’s in great condition, doesn’t blow smoke (and neither do I), I never deliberately speed (in fact I am helping to test a green driving app) and  so the engine is never working hard, it is in fine tune so there is very little pollution, in fact I think it drives much cleaner on high octane petrol than the average car let alone the diesel soot smeared black smoke spewing trucks I see delivering frozen food to retailers.

I have spent half of my life working in voluntary unpaid positions after work, from boards and committees including as a Civil Defence Rescue Team Leader, Chair and committee member of boards including a music centre that has taught thousands of children to play music on instruments they couldn’t afford to own, volunteered in a food centre providing vegetables at farm cost to people who couldn’t afford to pay retail, fund a guide dog, support charities and worked hard all my life.

I indulge myself a little when it comes to my guitars and continuing to lean music and have done some travel (most of it on business with very little time for myself) and I consider myself to be a good citizen. Don’t get me wrong, I’m far from perfect and have room to be a better person, but I do care about my community and my environment.

But I do have cancer and I do have a bucket list. I thought I’d wait until I retired before I went and had a but more fun and I’ve recently been pointed out that I am no longer insurable for health and life. Obviously they consider I have a long life span ahead! I haven’t given up on that myself.

I do my best not to judge other people and I’d like to suggest that people who are quick to judge or try to make me feel bad for finally owning my (second hand) dream car should have a close look in the mirror. I hope they never find themselves in a similar situation to me.

 

 

 

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.

I’m Very Thankyou


ChillinYesterday I asked a colleague how she was doing, she replied that she was doing well. I said that I was pleased to hear it and asked after he partner who had been unwell.

She then asked me how I was doing and I replied “I’m very thanks”. She said that was great and then continued into a conversation.

If I ask you, I’m actually asking. What about you? Is it a platitude or friendly greeting, or is someone engaging with you and really cares. My response is one way of finding out if the other person is really listening. I would expect someone who is listening to either laugh (because they know me) or respond with a “very what?”

It doesn’t take much to engage a little with people, even a smile from a perfect stranger, with no more meaning than acknowledgement of your existence from a fellow human being, matters. I’d really welcome some comments here because this interests me.

Next time someone asks you how you are, whether or not you respond with a platitude, if you have a moment, ask them how they are, in reply. Listen to their answer and show that you listened with empathy. Ask a question or offer a positive response relevant to their response. Show them you care and try to make it a habit. Then please come back to this blog and tell me how it went.

I’d really like to know.

 

Pharmac funds flavoured condoms


A couple of nights ago I was in an urgent chemist with my daughter to fill a prescription who was suffering an allergic reaction to something. We were discussing generic drugs.

In New Zealand, many drugs are subsidised by Pharmac who are a government agency. we were talking about Zyrtec which is an antihystamine which works very well for sinusitis and related allergies. This drug used to be subsidised but has been replaced with a cheaper generic drug, which according to Pharmac is identical.

The chemist said that he himself suffers from the condition and has tried the generic, which didn’t work for him and Zyrtec which does. he further went on to say that he spoke to people who work for the generic drug manufacturer at an international coference and they told him that the majority of the factory staff will not use the generic drugs they manufacture themselves, and favour the original manufacturers product.

It’s all about money and I understand that many asthma sufferers in New Zealand also had major problems when their Ventolin inhalers were replaced with another generic. I wonder how much it costs the taxpayer when people get prescribed cheaper drugs which are ineffective or less effective and end up in hospital.

So to the story today, I just received a tweet from the NZ Herald to say that Pharmac is now funding flavored, ribbed and otherwise enhanced condoms. I am all for free condoms to reduce unwanted pregnancies, STD’s and any other consequences of unprotected sex, but if they can cough up for fancy prophylactics, surely they could also fund effective drugs and help patients access what their doctors want them to take?

While this blog is starting to get a good following, I would love to get more readers and encouraging me to keep writing. If you feel that my blog is interesting I would be very grateful if you would vote for me in the category of best blog at the NetGuide Web Awards. Note that the form starts each site with www whereas my blog doesn’t and is of course https://luigicappel.wordpress.com.

Thanks so much for your support:)

GPS Tracking and Navigation for Elderly People


The other day I read about a new invention, which is a GPS enabled walker for elderly patients. Apparently this is a student research product and being tested in Nursing Centres. It uses Wi-Fi communication and helps guide people around a complex such as a hospital or retirement centre. My first reaction was that this was a joke, but the more I think about this navigation for zimmer frames, the more it makes me think about solutions we will see soon.

Firstly, people do get lost in hospitals and large complexes, and the people most likely to lose their way will be elderly patients, perhaps with dementia or simply struggling with stress, pain or under influence of medication that makes them a little dopey and disoriented. If they are in a wheelchair or using some other aid, a mapping or navigation device could well be useful. Hospitals will in future have WiFi networks for their and this could be a device that is supported by it.

I often hear stories about elderly people with dementia getting lost when they go for walks and understand this is quite common. If they remember that they do live in a village or rest home and have a navigation device, it could guide them safely back home.

The other side is far more likely in the near future and that is tracking of people. I had a discussion today with someone from a New Zealand hospital about tracking of staff who visit mental health patients in their homes and the value of being able to locate them if they haven’t checked in within a pre-aranged time. Small pocket GPS tracking devices with GPRS connectivity already exist commercially and some of them also have ‘panic buttons’ that send an urgent alert together with the current GPS co-ordinates. These are typically still quite expensive, i.e. over $500 but with volume the prices will come down.

St Johns and other organisations have solutions such as LifeLink which is a great solution for in and around the home, but what happens when people go further from home. Wouldn’t it be great if there was a solution that would allow you to locate your elderly or ill relative if they don’t return from shopping or a quiet walk. What if they just want to walk a few houses down the road to visit a friend? I would have gladly paid a rental for a service like that for my late grandmother who had a fall one evening and wasn’t found until the following day with a broken hip.

Although it’s not aimed at  elderly people, you will soon find walking directions on portable navigation devices (PND’s). You will be able to download a map that tells you where to park your car and then how to find your way around shopping malls, hospitals and unversity campuses, through parks and arcades. Maps of this nature will be commerically available within the next 12 months. They will also be available on map web sites in the very near future.

Most countries will also very soon have sophisticated navigation software and maps available to run on mobile phones, which will be as impressive as the portable Navigation Devices that are so popular today. Many phones have GPS built in and Bluetooth GPS Receivers abound for much less than $50.

It’s not a big stretch to see software being added that allow your location to be sent to other people on demand (with your permission of course). This isn’t Sci-Fi I’m talking about, it’s 2008 technology.

While this blog is starting to get a good following, I would love to get more readers and encouraging me to keep writing. If you feel that my blog is interesting I would be very grateful if you would vote for me in the category of best blog at the NetGuide Web Awards. Note that the form starts each site with www whereas my blog doesn’t and is of course https://luigicappel.wordpress.com.

Thanks so much for your support:)

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.