Almost Ready - Two Days of Radiation Therapy Planning

Well, we thought we knew what the plan was. But, I’m quietly, but definitely, coming to the conclusion, that one key character requirement for dealing with the Public Health Service is Flexibility. It seems that no matter what you’re told about the plan going forward, you’d better allow for changes on the fly.

So, Monday morning and we’re off to Southern Community Laboratories in Hastings for a blood test before we hit the highway to Palmerston North (PN). When I rock up to the counter with the form from the Radiation Oncologist in PN, the lady behind the counter looks at the form, looks back at me and asks; “Who gave you this?” It seems that, regardless of the “indecipherable scrawls” on the piece of paper, none of the necessary boxes were filled out or ticked, nor had the doctor put his name on it. Anyway, she asked me a few questions and after listening to the answers, did her own bit of scrawling and ticking on the form, gave it back to me, told me to take a number and a seat and someone would sort me out soon.

Isn’t it strange how every Phlebotomist has their own way of going about getting blood out of you? This one decided that the best place was the inside of the elbow – remember the time I got an infection that put me in hospital for two weeks? Well, after using my right arm as a pin cushion a few times and then, after actually listening to what I was trying to tell her, she used a vein on the back of my hand – and, guess what? Job done.

Back in the car and heading to PN for about ten minutes and my phone rings. It’s the ORL Nurse from Hawkes Bay Hospital, ringing to tell me I need a blood test urgently. After a couple of minutes of confusion and miscommunication it seems that the test I just had didn’t tick all the boxes and - could I please go straight to the PN Radiation Centre, pick up another blood form, and they’ll tell me where to go!

For the blood test.

Something to look forward to for the next two and half hours.

Anyway, that all happens, and then we head to Ozanam House. After a slight detour – caused by the passenger giving wrong directions – we arrive at Reception and it all looks very nice. One of the lovely ladies that manages the place takes us over to Ryan House and shows us through the kitchen, lounge and Resident’s Laundry, explaining how things work as we go. Then she shows us to our room and leaves us to sort ourselves out.

Now, just so you all understand what Ozanam House is, here’s a bit if a paraphrased extract from their website…

Later that evening we decided to go for a wander and a little bit of exploring. Turns out Ryan House has two lounges and two huge kitchens. As we wander into the “big” lounge we’re greeted by all those sitting around chatting and watching TV. Then we wander into the kitchen and there’s another group of people that greet us as they’re preparing their meals. It’s all very friendly and informal and the atmosphere is very relaxed.

Throughout the next day, when we’re not at the hospital, we get to introduce ourselves to some of the residents and find out a little bit about their stories. We soon find out that everyone has very different issues with cancer and – a light bulb moment for me – I find out that most people want to talk about it. Interestingly, the people who did tell us their stories were quite positive about their situation and had nothing but praise for the levels of treatment and support they were receiving, both from the Hospital Staff and from the Ozanam House Staff.

So, after a good night’s sleep it’s off to the Hospital to have my mask made. Now, if you’ve been paying attention, you’ll know that the plan was – get my mask made today and have a CT scan and MRI tomorrow. But, apparently the Nurses in the Radiation Unit had their own plan. 

This started off with me getting a Canula fitted for the CT Scan. My first reaction: Mild panic – thinking the Canula would be left in overnight for the MRI. I immediately thought back to the last time a Canula was left in and I ended up spending two weeks in hospital with an infection. Anyway, after being assured that the CT Scan was happening that afternoon and that the Canula was coming out immediately after, I relaxed and sat on the bed while the Nurse made half a dozen attempts to get the needle in.

Boy, this is fun.

Eventually, she gave up and went to get the Resident, who’s apparently the recognized PN champion blood sucker. Well, he had a couple of failed attempts, told me a joke about how he wasn’t feeling anything, and eventually found a spot that worked.

Then we were off - round the corner - to sort out the mask. But before that, we all had to make sure that I was me, and that I knew all about how to make a mask. The lovely young nurse explained the whole process to me, most of which went straight over my head, but I did come to understand that my part in the process was to lie on this very hard board and keep still. So, I did that while they worked their magic.

First thing they did was to put a lump of “stuff” (think white bread dough) under the back of my head, wet it a little bit and then shaped it around my neck. After they apply a bit of magic liquid (I think, it’s water), this “stuff” sets firmly and becomes my “pillow” for each radiation session.

No, I’m not having a snooze.

Then it’s onto the mask. Pretty simple really. They take a flat sheet of perforated plastic, heat it up – then a nurse stands at the top of the bed with the plastic sheet in both hands and quickly, but gently, pulls it down over my face. To me, it wasn’t much different to having a warm towel placed on your face. Very little pressure. Then they cool it down with wet flannels. Once the plastic cools and becomes hard, you can’t move. I think this might be when some of us tend to freak out a bit, but I wasn’t too bothered.

Gotta say, after all the information, hype and warnings about radiation masks that I’ve listened to since starting on this journey, the actual experience was a bit of an anti-climax. I really feel quite relaxed about it now, and hopefully this feeling won’t change too much as the treatments progress.

Seems there’s no lying about allowed. They take off the mask, get me off the bed and send me across the hall for the CT Scan. Once again, we go through the ID process to make sure I’m the same guy that just got a mask fitted, and into the machine I go. Now, this is a CT with contrast. I’ve had a few of these before and, once again, I get all the warnings about side effects – hot flushes and a strong desire to wet yourself. Luckily, I only get the flushes. Apparently, the contrast can affect people differently.

Anyway, the scan finishes, the Canula’s removed and I’m shunted out the door. From overheard conversations during all these processes, I hear there were more than 50 patients having some form of treatment in this particular unit that day. For such a busy place, the staff were amazingly relaxed and friendly and made the whole experience much less traumatic than it might have been.

It’s now not long after lunchtime, so we decide to call into a Café, directly across the road from the main hospital entrance. It’s called Café Zest. Unfortunately, they don’t have a website, but we’ve decided it’s going to be our go to place in PN for good food. We really enjoyed the meals and will most definitely be back.

Another relaxed night at Ozanam House watching TV and chatting with the other residents, and then next morning, we’re back at the hospital, for an MRI. Well… it’s actually not the hospital. It’s kind of an Annex and it’s run by a commercial radiation firm, and guess what? They want to know who I am and what my medical history is. So, after two pages of filling out forms, we start playing the Canula game again, but this time it only takes three goes before the blood starts pumping, and then… turns out this is no ordinary MRI. This is a “Planning” MRI. The difference is – instead of being in the machine for about twenty minutes, I’m in there for about fifty minutes.

Now this might not seem like a big deal, and it’s not really, but… I’m going to use this experience to point out a couple of simple things that can really make a difference to someone travelling down the cancer road. I know there are some Medical people who read this so, when you’re talking to future patients, please keep in mind that it’s little things like this that can make all the difference to a patient’s experience and their wellbeing.

During the original meeting with the Radiation Oncologist, I was asked if I’d had an MRI previously. When I said yes, he asked me about reactions to Contrast and then he moved on to the next question. The previous day, before the mask was made, (during the “prep” talk), I was asked the same question by the Nurse. When I was having the Canula fitted before the MRI, the Technician asked me the same thing, but, again, didn’t explain the time difference. If, on any of these occasions, the person talking to me had gone on to tell me it was a ‘Planning” MRI and would take a lot longer than the previous MRI’s, then…

I would have been better prepared to remain in the machine for a longer time without wondering what was happening, and…

My wife wouldn’t have been sitting out in the waiting room wondering what was taking so long.

As I said, this is not a “Big Thing” but, it is one of the “Little Things” that can be added to other “Little Things” that do have a big impact on a person’s anxiety levels and comfort levels during these procedures. As a lot of people are fond of saying... Effective communication can make all the difference.

Enough of that. When the MRI was over, we wandered off back to Osanam House, retrieved the car and headed back to Hastings.

Man, it’s great to sleep in your own bed.

It’s going to be a big week again next week. I’m getting a special sleeve to reduce the scaring on my arm and, hopefully, by the end of the week we’ll have a plan to sort my eye out. I’ll let you know how it all goes.

Remember…