What’s It Like to Have Prostate Cancer Radiation Treatment, a Bursting Bladder AND What Does that Have To Do With the Price of a Cup of Coffee?

I chose radiation treatment for my prostate cancer because it allowed me to continue to work and because it has a 95% success rate.

On the first visit to the clinic with my wife, we were waiting in the lounge to have the process explained to us and for me to have a CT scan so that they knew the shape of my body. This was so that every time over the 8 weeks of my treatment they would be able to focus the radiation on the specific area to be nuked and minimise the risk of damaging my bodily organs.

My wife and I were sitting in the waiting room when a man rushed pass at a frantic pace, loosening his belt as he ran for the bathroom in a cold sweat. He was in so much of a hurry that he was sitting on the toilet before he had even got the door shut.

One of the things you can lose in this process is your modesty. I wouldn’t ever want to be that guy, when all the heads turn in his direction, embarrassed for him, turning away again as he comes out, hoping he didn’t see them.

The process is that roughly 45 minutes before you have your radiation  treatment you need to have drunk enough water to have a full bladder when you have your therapy. The reason is that this helps push your organs away from the prostate treatment area, thereby protecting them from harmful rays.

I was lucky because I was often able to get the first appointment of the day, meaning that on those days I didn’t have to wait in the lounge with my full to bursting bladder for too long.

So you arrive at the hospital and check in with your calendar schedule and they ask you how you’re doing. I always had a stock answer whenever anyone asked how I was, which was “GREAT!”, with a big smile. Here they would say, “Actually how are you really doing, because when you are having radiation treatment, we actually need to to know?” That was a mindshift for me and there were times when I felt a bit sorry for myself and when other people asked how I was, I told them as well. I wish I hadn’t, but then they did ask right?

Contains the robes we wore when undergoing radiation treatment

So the next thing you do is go downstairs to a changing room where you collect your yellow daffodil bag which contains your lava lava which you will wear for the next wee while, holding on to the water in your bladder. Your clothes go into the bag and you put it back on the shelf with the others, realising just how many people are currently getting radiation treatment like yourself. It’s all sorts of cancers of course, not just prostate.

I met some great people while waiting for my treatment, both patients and their partners and we shared battle stories. Often the partner was feeling more stressed than the patient. I met people who were from out of town who had to stay at Domain Lodge, a facility provided free by the Auckland Cancer Society for cancer patients because the distance was too far to travel each day. This had all sorts of consequences. Children still had to be looked after, bills still had to be paid and some of them were running their own business and typically the treatment was every day during the working week. This is one of the reasons why I am a staunch supporter of Relay For Life which is next weekend, the 10th overnight through to the 11th of March at the Millenium Sorts Institute on Auckland’s North Shore.

So it comes your turn and you adjust your lava lava so it won’t fall off and wander down the corridor, past the control room where they are going to watch you on camera, put your valuables on a chair. Then you lie gingerly down on the scanner bed, hoping you can hold your water. 

The friendly staff chat away with you and each other as you get settled, with your head under the scanner and your legs on a pair of moulded supports. They put a pillow under your knees and you focus on your bladder.

Then they adjust your lava lava and with a pen of some sort draw a mark at the point where the radiation will centre, which becomes less embarrassing after the 20th time; and they leave the room. Then the noise starts up and they talk to you through headphones as the treatment begins. It only takes a few minutes and as it finishes, you thank them and rush for the bathroom to empty your bursting bladder as quickly as you can as they tell you how well you have done once again.

Sometimes you have to wait longer than your booking time and it can get pretty uncomfortable. One morning they had to do maintenance on one of the scanners and I had to wait so long that I had to go to the bathroom, empty my bladder and then drink another bottle of water and wait the best part of an hour for my already stretched bladder to fill up again.

The worst day was when someone before me arrived late and I had to wait over half an hour longer than usual before I got my turn. They said if I wanted to I could empty my bladder and start again, but I had to go to a meeting at work and I didn’t want to be at the hospital any longer than I had to. So I gripped on to the edges of my chair, tightened and loosened, tightened and loosened (not a typo) my core muscles focussing on not losing control of my bladder.

I came very close to having to rush to the bathroom several times, but I didn’t want to blow my perfect record. My pride rode to my rescue.

The pain and pressure was getting worse and I persisted. Nurses came to me a few times and asked me if I wanted to start again, pointing to a nearby water fountain (not the imagery you want at that time but well meaning). I replied that I would soldier on.

Eventually after about an hour I got my turn and barely adjusting my lava lava, just acknowledging to myself that by the time I got to the room, it might be unraveling from my body, I waddled to the machine and gingerly got onboard, hoping for everything I was worth, that I could hold it in.

We got settled and barely aware of the daily x (actually a little line) marks the spot being drawn by the nurse just above my privates. I just focused all my energy on my now very full bladder which was telling me that I wasn’t responding to the messages it was sending me. I was determined to hold it in, but it was getting more difficult by the minute and I was just wishing they could speed it up. Time seemed to go into slow motion, but the discomfort got worse.

Finally the nurses left the room and I lay there pulling up on my core muscles for all I was worth, cringing with the pain and being told through my headphones that I needed to keep still. “Easy for you to say I thought”.

No, I needed to pee and I needed to not pee and I needed to hold those muscles in. What if wet myself? What if I peed on the machine bed? I still had a little dignity and I remembered that guy, rushing for the bathroom on my first induction visit.

I almost got off the machine 3 or 4 times, but I hung in there. Then the radiation treatment started and amidst the din of he rotors, I thought to myself, “I just can’t hold on anymore, I have to get off!” Then realisation set in, as I was being reminded to keep still, that if I got off while the radiation was beaming at me, I could potentially damage other parts of my body.

I clung on for dear life, cringing, counting the seconds, trying to keep still and then after the machine stopped, I was halfway off the bed as the nurses were coming back and there I was.

Now I was the guy rushing for the bathroom for all I was worth, not bothering to waste time locking the door, letting the lava lava unravel to the floor as I dived for the toilet. Oh the relief through the pain!

I picked up my body with my bruised dignity, got changed, went to the bathroom again and finally walked up the stairs to the nurses station to get a smiley face on my monthly chart, to say I had my treatment for the day. 

This had been one of the days that I was hoping would never happen to me, but they did tell me that we all go through it.

Eventually after 8 weeks I had completed my treatment and eagerly awaited my visit to the oncologist who I anticipated would have good news for me.

Unfortunately he didn’t. He said that while 95% of people respond well to the treatment and find themselves in remission, I was in the 5% who didn’t.

So after 2 months of drinking water, driving each morning to treatment and then off to work, I was no better off than I had been before I started. That was a bit of a body blow and whilst I understand statistics, I had thought about the odds and as a keen poker player had thought to myself that if I had gone into a casino for a tournament and been told that I had a 95% chance of being in the money at the final table, I would have been really excited. The 5% seemed really unlikely.

The Coffee

After each radiation treatment I would go into the hospital cafe and treat myself to a flat white and a huge cheese scone. I couldn’t have breakfast before the treatment, so this was my little reward to myself and I came to look forward to it. When I went back to the hospital for specialist appointments I usually went back to the cafe for nostalgia’s sake, but it never had the same satisfaction as it did on the days I had radiation treatment. 

So here’s where the coffee comes in. A cup of good coffee costs around $5. Coincidentally, that is the level where a donation to Relay For Life becomes tax deductible. That means your $5 donation only really costs you around $3.50. That’s peanuts right? But what if all my readers gave that?

I was going to say, if you know anyone who has cancer, how about making a small donation in their honor, but you know me don’t you? You now know me better than you did before, because I have shared some very personal experiences with you.

Next weekend when I spend the night walking around the track at Relay For Life with my friends and family, I am doing so to help raise funds for the Cancer Society to help fellow cancer patients with accommodation, psychological help, research and much more. It is all rather meaningless if I don’t get donations and I haven’t even got a third of my modest target so far.

So here is my plea. Can you find it in your heart to make a $5 donation for a good cause? 1 in 3 Kiwis will get cancer. I hope that will never be you, but it will probably be someone you care about. Will you please help? I would be so grateful.

This guy must have been really hot. The purple sash denotes being a cancer patient and survivor

It’s been a real struggle this year to get donations. So I really thank you for paying it forward and also am very grateful to my friends and family who are in Team Early Birds, relaying for 18 hours to support me and also people who they have lost or are still fighting the good fight.

 

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Forget David Shearer’s Man Ban but What About Teenagers?

David Shearer’s concept of having electorates where only women can be put forward as candidates has been dropped. The man ban is gone. Personally I think the concept was not only wrong because it fails to look at candidates to represent us solely on merit. Secondly, Labour is already 40% represented by women MP’s. Therefore in my opinion, women are not being discriminated against in the political arena at all. If they considered the best for the job gender doesn’t come into it.

What we don’t have in my opinion is sufficient youth representation. When I was at college I was a member of the Secondary School Students Association and got to meet with senior leaders in education including the late Paulo Freire, leaders of world churches and many others. They sought our thoughts on the future, stating that we were going to be the leaders of the next generations, just as politicians say today.

Yet, other than once every 3 years, when there is a youth parliament, which is coincidentally next week, there is very little consideration to what youth think about the issues. Sure, MP’s visit schools and do handshake photo opportunities with children and listen to their concerts etc, but kids actually come up with some great ideas, not convoluted by the complexities that adults have.

So if we want the children to help create their own future and if some of them want to be involved in politics, (I appreciate there are organisations like the Young Nats), if we really care about proportional representation, why not have some list seats (not electorate seats) and invite a few promising teenagers into parliament. They could be studying political sciences or have other skills or interests. Have them plug into their demographic and represent their interests in parliament.

What do you think?

On terrorists and airport security

I was listening to News Talk ZB talkback radio as I got out of the shower this morning. Those who weren’t complaining about ice cream’s for sale at Cathedral Cove (you would think there were more important things on people’s minds), were talking about the latest security measures as a consequence of the Christmas Day attempt to blow up a plane flying from Amsterdam to Detroit,

Al-Qaeda have since claimed responsibility for this attempt.

One guy said that they should convict and hang the terrorists within a week of catching them. Didn’t seem to make a lot of sense to me, after all the guy was trying to kill himself wasn’t he? Killing this person would only complete part of his goal and help to make him a martyr and this give him access to his 72 virgins or houri.

I don’t really want to dwell on those self-claimed ‘representitives’ of Islam, who are intent on bringing down the US, during a time of Christian celebration. I don’t for a moment believe that they are representative of Muslim people.

What this reminded me of, was a flight I made from Munich to San Francisco earlier this year, which I blogged about previously. There were many Muslim people on the plane, some of whom seemed to have a real disdain towards the European people on the plane. One man got up and started distributing copies of the Koran to fellow Muslim passengers. This was during the night on a long flight and I had just finished watching the movie Traitor on my laptop and the whole atmosphere was very creepy.

The reason I raise this is that renewed terrorist activity has caused major delays at airports around the world, where security levels has been lifted and are causing major inconvenience for passengers travelling to the US. Security measures are easing again, according to the NY Times, which is great, but the effect of all this could cause racial tensions to rise. This has the potential to play right into the hands of terrorist organisations. Their goal has to be causing terror, not necessarily by killing people.

A side effect of this will be a backlash against Muslim people in general. Because aspects of their faith, such as their clothing and burqa in particular are considered threatening to westerners and some see them as being demeaning of women’s rights, particularly as they perceive that many women in the Middle East do not have the same rights and freedoms as they would in the western world. Interestingly some Muslim women who live in the west also want the burqa banned in those countries.

It is great to know that their are organisations like Muslims Against Terrorism, but it would be great if there were more opportunities for people to understand a bit more about the people themselves, especially those who move to the west. It doesn’t help when people immigrate to other countries but want to take their customs and practices with them, such as the wearing of burqa and niqab.

In western countries, we like to see people’s faces as a measure of their honesty and people who cover their faces are often interpreted as people with something to hide. Many people came to countries such as New Zealand to get away from persecution or discrimination about their beliefs. People like to feel that others in their community are like them. New Zealand is big on human rights and political correctness and as the first country in the world to give women the vote, women’s rights are considered inviolate.

People who are different threaten the lifestyle of people in this society, just as westerners look out of place in other countries.

I don’t know what the answer is. All I know is that differences can be both threatening and interesting. Historically wars were about religious beliefs and about the haves and the have-nots. Combine those two, such as when the oil rich nations deplete their resources, or when poor countries need to rally their people into a nationalistic fervour to keep them from thinking to much about wanting to leave their countries to go somewhere where they perceive a better lifestyle and you have a tinder box in the making.

I consider myself a very easy going person. I was born in Holland, came to NZ, went back to school in Holland and made my home in NZ. I love world cultures, languages, food and the mix of ethnicities that make up our country. Yet, hopping on a long night flight full of people in traditional Muslim dress, with a man handing out copies of the Koran to strangers on the flight, speaking a foreign language, while studiously ignoring the ‘infidels’ made me feel very uncomfortable.

Add to that a continued threat of terrorism and I wouldn’t be surprised to hear of violent situations on international aircraft, based on a perceived threat, which may be caused by as simple a situation as I found myself in. Given that non Muslim people are not highly motivated to make dialogue with Muslim people in their community, I think the Muslim people need to open doors in their community. A classic example was the goodwill generated when the Aisha Mosque in Wallsall opened their doors to the local community. Comments from local non Muslim people were very favourable.

I hope more Muslim communities will not take the lead and open their doors and their arms in fellowship and help to break down the barriers. But I also believe that if they want to live in the West, they should also liberalise some of their practices, particularly when out in public. This doesn’t mean turning their backs on their culture and history, just making an effort to not appear so different in public. Islam Open Days are another good way for people to learn more about beliefs and lifestyles and perhaps reduce some of the fears, but of course most of the people who go to them already have an affinity towards them. The challenge is to bring in the rest.

This is of course just my opnion and I welcome you to comment and share yours.

What’s wrong with calling yourself a New Zealander

I love the Census. Every 5 years we get this massive set of questions about who we are, where we come from, what we do, where we live etc. There is an amazing wealth of information in the Census and this time the Government have made it available for free if you can find what you want without assistance.

I spend a lot of time helping people on the fringe of this and am working on the development of a web application to help people view both their own business data and relevant Census data. Watch for this in a future blog if you are following me.

One of the questions they ask us Kiwis is about our ethnicity. I remember in 2006 when there was a strong movement of people saying to each other that they had had enough of the racial issues between Maori and Pakeha (and this clearly came from both sides of the fence).  A large percentage of Kiwis grew up side by side with Caucasians, Maori and people from many othr places including the Pacific Islands. They grew up as friends and neighbours and if there was discussion of ethnicity it was with interest and pride, not with any tensions or mistrust.

On that theme, 400,000 Kiwis signed their ethnicity, not by selected tick boxes for European Caucasion. New Zealand Maori etc, they signed in a text box called other as New Zealanders.

Whilst this made sense in a way as they tried to make their point, it has also caused some significant problems for organisations who use that information for decision making and the Department of Statistics is looking for ways to get better information in the next Census is 2010.

In the Statistics New Zealand Draft report, prepared for public discussion, they outlined some of the concerns and explained ways that the ethnicity data is used. Here are some examples including some of my own:

• The health sector uses ethnicity data to target services for groups experiencing inequalities in health. For example, it is commonly known that Maori have a significantly lower life expectancy than Europeans.
• Asian people, especially new immigrants have unique health needs.
• Local government agencies use these statistics in planning and service delivery, particularly in regions experiencing significant demographic, social and economic change.
• Marketers with products targeted and particular groups are able to identify where those markets reside.
• Education planning needs to take into consideration the demographics that make up local communities to ensure that education services are relevant to the needs of that community. Diverisyt is a key tenet in the NZ education system, but in order to best support it and plan for it, statistics are requred.
• In the business world, demographics can help with many aspects of business planning. For example a manufacturer of baby bottles found that in one area bottles with blue teets weren’t selling and in another area bottles with yellow teets weren’t selling. After a year or so with lots of stock thrown away or discounted they discovered that it was an ethnicity issue. By rotating the stock to the other areas the problem was solved.
• Today we have many ethnic communities, which is a relatively new situation, at least in Auckland where most of the population lives. This can be very useful for specialist retailers or service providers such as ethnic supermarkets, restaurants, clothing, music and entertainment providers. This is also of relevance for churches who want a lot of their congregation to be able to walk to their place of worship, immigration consultants, language schools or ESOL and so on.If a business can identify where their target market lives, they can better plan on placement of their business or how to find their new customers.

From a futurist persepctive we can use this information to try to predict what the city and country will look like in the future, where the opportunities and threats lie and how to support the changing community. For many people, New Zealand is seen as a wonderful safe and green place to live and raise a family, but each one brings a piece of their own culture with them, but also bring issues of culture, work training, language, education, commerce and the need to belong to a group of people with similar interests and problems, while their children are assimilating into the local community. New Zealand has changed dramatically over the last few decades and it is essential to the wellbeing of the country that the Census accurately represents statistics that can assist in making sure that everyone is able to enjoy living in this country and able to contribute in their own ways.

The Census provides valuable information about the changing nature of our country. Unfortunately this ‘movement’ towards calling people Kiwis means that it has been very difficult to monitor the change in ethnicity in NZ from the 2001 Census to the 2006 Census, meaning that the data is difficult to use for a 10 year period.

Statistics New Zealand is now asking the country for input as to how to allow people to assert their relationship to the country, while at the same time allowing Statistics to gather important information in order to help the country meet the needs of the large range of ethnicity in our country.

I think the answer has to accomodate both the desire for people to consider themselves bona fide New Zealanders irrespective of their ethnicity, but it is also essential to understand their roots or backgrounds. It shouldn’t be hard to combine the questions in such a way as to support the need for quality of information as well as the need of people, irrespective of their origins, to feel they belong and are important players in our multicultural society today.

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:)