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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Prostate Cancer Radiation Treatment is Over

I finished my 37 days of treatment last week and it was an unusual experience, a little emotional almost like leaving a job. They told me I was a model patient, I had followed all the instructions about diet and exercise and only had to get off the table once over the two months (because of wind). The average I’m told is 6.

The faces in the lounge were changing and the people I had started to get to know had moved on and like me will be waiting for news of successfully shrinking or obliterating tumors. I had my last walk past the electric aquarium designed to relax you as you walk to the table.

I thought about asking if I could take some photos while the giant machine was rotating around my body, but I decided I didn’t have the energy and the answer would probably be no, because you can’t move an inch while it is operating, or risk damaging healthy parts of your body. I won’t ever forget it anyway.

When I finished, they gave me a lovely card full of congratulations handwritten by a dozen or more of the staff I had come to know, goodwill messages and instructions not too work too hard. It was like leaving a job. Very touching. I can’t tell you how important it is to have good people looking after you, who really make an effort to get to know you and keep your spirits up, whilst prepping you, which can be intimidating and embarrassing.

So I was out of my lava-lava for the last time and off to see the nurse.

He told me that my side effects are going to peak in around two weeks. I got a form telling me that the tiredness Apparently despite taking a drug to reduce the may last up to a couple of months after the treatment, then I should start feeling my normal self again. There are other side effects that may develop several months or years later, but lets get rid of the cancer first!

We discussed that the drug I am taking that reduces the side effects like having to pee painfully every hour and having to go again 20 seconds after I thought I had finished, my blood pressure was fairly high. Kind of understandable given what my body is dealing with but a side effect of the drug is that it lowers your blood pressure. That’s a little bit of a worry because my GP is always telling me that my blood pressure is usually low and better than his. I’ve had the odd moment when I get up and get that blood gone from the brain wooziness, but I’ve learned to get up more gently. It wouldn’t do to find myself on the floor in the middle of a business meeting!

He told me to take it easy with my diet because my body has now adjusted to the changes and I will suffer if I try to go back to everyday food too quickly. He was right, but that’s another story.

 

 

How Do You Talk To Someone Who Has Cancer?

Last week my wife and I went into hospital to get me inducted into the process of external beam radiation. I’ll spare you most of the detail. It largely involved a CT and MRI scan to ensure that the radiation only hits the affected areas and to minimize radiating healthy parts of my body.

Radiation Treatment according to the Auckland Star in 1903

Anyway, as I walked to the bathroom (part of the process is having the same amount of fluid in my bladder every visit), a woman piped up that she had more hair than I did. Her punchline was that this was because she was wearing a wig. I was taken aback, thinking “how do I talk to someone who has cancer?”

Then of course I realized that I have cancer and people will be wondering  how to talk to me. Funny how you have these moments of lucidity!

I realized that I now have the right to share black humor with other cancer sufferers because we are all on the same boat, so I quipped back that losing my hair wouldn’t be a problem for me.

I think humor is a very important aspect of health. People survive many tough times by engaging their sense of humor as my friend the Joyologist Pat Armitstead will attest to.

So back to my new compatriot under the wig. When she was called for her appointment, they asked her if she was well. REALLY? She responded with “I wouldn’t be here if I was!”

As she went off to her appointment I pondered on this topic and was a little disappointed in myself. Clearly she was feeling stressed and I could have sat down with her, engaging with a bit more of a joke or a chat. I will do that in future if I have the opportunity, particularly after my first bombardment with radioactive isotopes. Having become a veteran of cancer treatment, I will feel more empowered.

So how do you talk to someone who has cancer? Just like you would talk to anyone else, just keep in mind that they have a lot on their minds and may be distracted, oversensitive, tired, confused and most likely a little stressed. Lighthearted would be a good place to start. Some of us will be open to conversations and some won’t. Respect that either way.

How should you not talk to someone about cancer? The other day I was in the office lunchroom and an “exspurt” (deliberate misspelling) was giving an oratory on cancer. I was disappointed because he’s a nice guy and he obviously didn’t know that I have cancer. Anyway this kind hearted expert proceeded to tell anyone within earshot that as soon as any kind of cancer gets you, it’s all over Rover. “It will kill you, maybe not today or tomorrow,  but they all die from it”, he expounded.

I quietly left the room thinking that in our business, we not infrequently complain that every man and his dog are traffic engineering experts, telling us how to do our job. So if you have an opinion like that, I’d appreciate not hearing it. You never know who you are standing next to and what they are dealing with.

Footnote: This is my third blog about my cancer journey and I had some trepidation about sharing my adventure. It is helping me work through some of my thoughts, but more importantly:

6 people have now come to me and told me that they are going to get tested, motivated by my story and that’s really exciting. If I can help one person, who like me, is in an early treatable stage of cancer, that otherwise wouldn’t have known about it, what a wonderful thing that would be.

I really have appreciated the support from friends, family, colleagues and total strangers, some who have shared intimate experiences and all with kind thoughtfulness.

Don’t be afraid to talk to me or ask me questions, or simply leave a comment. Prostate or any cancer should not be a taboo subject.

Finally the staff in the Waitemama Health Board speak out

As a footnote on my story yesterday, in this morning’s New Zealand Herald, senior doctors have finally spoken out, to the ‘disappointment’ of the Waitemata Health Board. I’ll bet they were disappointed. The Health Board say they have been working on it as fast as they can. But didn’t they close a whole floor of the hospital because they had insufficient staff? Now they are going to open a new ward.

At least it is now out in the open and we won’t hear any more stories of “It’s not usually this bad”, because we all know it is. The sad thing is that for the next few weeks at least, the newspapers, the woman’s magazines, TV and more are going to be full of sad stories about people who died because they couldn’t get their chemo or radiation treatments in time and now their cancers are invasive. We’ll hear about elderly people who didn’t make their 50th wedding anniversary because they didn’t get satisfactory care in time. I’ll put money on it that the Auckland and especially local nwespapers are going to be full of letters to the editor and many will be followed up as sad, sad stories.

The board will say “It’s not our fault, the government wouldn’t give us enough money.” The senior doctors, registrars and nurses will all be saying, “We told you over and over again, but all you cared about was budgets and efficiency.”

I have no problem with hospitals being run as a business, with controlled budgets and business plans, but let’s never forget what they are there for.

I do have one question though, and I wish my WordPress had a poll function, but then I doubt they would answer this question. Either way, here it is. To those people who work in our public hospitals. If you need surgery or have a serious medical condition, do you go to your public hospital, or do you go private? Why?

Sadly I am confident that for the majority, I already know the answer.

Again to those of you who work as staff in the hospitals, thank you so much for staying and not going oversees where you can earn at least twice as much money and in many cases function in a technological environment where most patients get their own drugs and not someone elses, where their files about their condition and allergies are available on demand and where far fewer people needlessly lose their lives. It must be very tempting sometimes to long for single shifts and an organisation that cares as much for their patients as they for saving money.

Now let the stories begin. I don’t want to sound cynical, at least any more than I already am, but it is election year this year isn’t it? There had better be some funds coming up for Auckland hospitals because health care is going to become an election issue.