Radiotherapy: A How-To Guide

I thought that I'd write something about the actual process of going through Radiotherapy. Whilst from one perspective it's a medial tool that is trying to kill cancer, from another perspective it's a fascinating process from a personal and technological point of view. If you have claustrophobia, you'll probably want to stop reading soon.

At it's core the machine is a linear accelerator generating high energy X-Ray photons, and then focusing them in a very precise manner onto and within malignant tissue. It's heavily computer controlled these days. Whereas your normal X-Ray machine produces an energy beam in the thousands of the Electron-Volt (eV) range, these machine produce it in the range of millions.

Before I continue, I'll answer one question straight up that most people ask:

Q: Does it hurt?

A: The simple answer is NO!

A slightly more complicated answer might be that the side-effects such as the radiation burns that the machine might eventually induce on the tissue surrounding the target area can become very painful - and that will make going through treatment a painful experience, especially in the last few weeks. It will differ from person to person - how deep the radiation beams are reaching in, and what area on your body is being targetted.

But the actual radiotherapy process generally lasts about 10 minutes or so, and the radiation does not itself hurt.

N.B.: the explanations in this post probably pertain to people undergoing head and neck radiotherapy. The experiences and processes for people being targetted in other areas of the body may be somewhat different. Similarly, how things are done in other cancer clinics and what services are available, may differ.

 1. BEFORE YOU COME TO THE RADIOTHERAPY CLINIC

Make sure that you're wearing light comfortable clothing. Most days I wore a simple zip-up jacket which was easy to get off and on again. At the very least you will have to take your shoes off.

Also, if the oncology nurses and doctors suggest that you're at a stage where increased pain medication is required to help you through the treatment because of radiation burns etc. - bloody-well take their advice! The oncology doctors and nurses are your friends - listen to them!

I tried to tough it out for a while and was stupidly uncomfortable to the point that I didn't think I could handle any more treatment. One of the registrars had to sit me down and give an ever-so-nice talking to - which amounted to "shut the fuck up and take your bloody pills!" So if they prescribe the pain relief - make sure you take some before you head off to hospital so that it's kicked in by the time you're ready for treatment.

2. DON'T TRY AND DRIVE YOURSELF IN

As the radiotherapy progresses you might find that a certain level of fatigue caused by the treatment may start to hit you. This is because the cancer is trying to grow, but at the same time the radiotherapy is trying to destroy it, and may be damaging surrounding tissues. So the cancer is sucking energy trying to regrow, and your body is sucking energy trying to heal. Hopefully the latter will win - huzzah!

Upshot is that you can tire easily and sleep for long periods. Prepare for this and just let it happen. If you fight against the fatigue then you'll only feel like shit, and won't be helping your body one teeny-weeny iota.

Sometimes after therapy you might feel a little tired and woozy. Don't try and drive! Get someone to drive you, or catch some public transport.

The Radiotherapy Unit can organise to have you driven to therapy by the Illawarra Cancer Carers - volunteers who give their time to support the Cancer Care Unit and its' patients. Most are retirees, and do everything from making lunches (esp. for Chemo patients) to fund raising, and also transporting patients. If there are angels living amongst us, then they're these guys.

NO! Not those guys ...

... these guys!

For $5 (at the moment) a pop, they will come to your house at a pre-arranged time, pick you up from your front door, take you to the hospital in time for your treatment, and wait until you finish. Then whiz you home again.

I mean, friggin' hell - you can barely get a taxi flag-fall for $5! If I'd used a taxi it would have cost me about $50 a round-trip. And the volunteers are the nicest people.

3. THE WAITING ROOM

Once you're in there, you place your little appointment card on the bench of the nurses' station so that the radiotherapists can come and pick it up and know that you've arrived and are ready and raring to go! Well, most days you will be ...

Inside the card is your name & patient number,
and you can also fill in your appointment times.

The coloured sticker indicates which machine you've been assigned to. There are currently three linear accelerator machines (LA1, LA2 and LA3.) Occasionally you might get shuffled about if a machine has broken down or off-line for maintenance, but generally you will use the same machine, with the same radiotherapists, so you get get to know them and feel a bit more comfortable about the whole process.

Every week, around Wednesday or Thursday they will give you a printout of the schedule for the coming week. They try and keep the times reasonably consistent, but not always. If there is some reason that you absolutely can't make it to an appointment time on a particular day, give them as much notice as soon as possible and they'll see what they can do.

Like anything, mostly the system runs on time but occasionally it doesn't. Don't freak out if things are running behind schedule - shit happens! Most of the time you'll be in and outta there pretty fast, but be prepared for the occasional hiccup. You can use your mobile phone whilst in the waiting room. Or bring a book, or tablet computer - very popular in waiting rooms these days. Like all waiting rooms there are magazines which for most part suck (well, for a geek like me anyway - who gives a toss if baby Prince George can fart "God Save the Queen"?) and a TV above the obligatory fish-tank. There are some toys for the kiddies and you can even do a jigsaw puzzle while you wait.

Don't leave the waiting area, or if you need to, tell one of the nurses. One of the radiotherapists will be out soon enough to call your name.

They'll ask you, for hygiene purposes, to remove your shoes and put on some highly swish little surgical booties.

Soon to be seen at all the fashionable red carpet events.

Finally it's off into the machine room for treatment - wheeee! For me, I had to take off my shirt or jacket. I also had to have my dressings removed. They'll ask you to lie down on the steel treatment table which I admit is one of the most uncomfortable things ever invented. If you're having some mobility problems (as was my case) then they'll help you up and settle you into place.

4. HANNIBAL LECTER STOLE MY MASK

One of the main tricks with radiotherapy treatment is to get the machine's radiation beam to hit the same spot every time, whilst doing minimal damage to the surrounding tissues. For patients undergoing head and neck radiotherapy, this means total immobilisation of your head and shoulders in just the right position, every time. (This is where it can be a problem for people with claustrophobia, or so I'm told.)

They do this with the use of a perfectly fitting moulded Radiotherapy Mask, and also a moulded pillow.

About 2 weeks before your radiotherapy begins, you'll be asked to come in and spend some quality time in what they call the Simulation Room. It's set up exactly like one of the treatment rooms, except instead of the Linear Accelerator machine, they have a CAT scanner. Here they will make the pillow and The Mask for you.

They do this by getting you to lie on this light blue pillow which is dampened to allow it to be moulded. They'll get the precise angle at which they want your head and neck to lie, and then press your head down into the pillow until it sets. Then it comes time for the fitting of the mask.

The mask is made of some sort of composite plastic mesh which fits across your face, neck and shoulders, and ends in large tabs which can be clicked down into position on the radiotherapy table forcing your head and neck to lie at the precise angle they want - making you unable to move.

During the fitting, the mask is also made flexible and malleable and they will keep pressing it down onto your head until they have it just right. Within a few minutes it dries out and becomes fixed. In truth I found this the most uncomfortable part of the whole radiotherapy process.

A very tight fit when locked down. Note the angle of my head.

Again, this is not a game for the claustrophobic!

Me holding up my radiotherapy mask in front of LA1.

Once the pillow and mask are made, they can be used again and again during treatment and the mask snapped into place very quickly. The mask fits tightly and perfectly against your skin - moulded exactly as it is to your nose, lips, chin and eye sockets. But don't worry - as long as you relax, you can breathe quite easily through the mask, and I was even on the odd occasion able to crack open my right eye a little - not that there's much to see.

The mask is fitted into place over my head.

In my case (as I think with most), the mask had a large outwards bulge over the target area - for me my right ear. In this was placed a large mass of a substance known as Bolus. This is a plasticy-rubbery substance that simulates the density of human tissue. Its job is to slow down the radiation and allow it to fall correctly on the skin layer underneath. The down-side to it is that it must press against the treatment area very tightly - in my case pressing right into my ear and tumours.

As mentioned above, as Radiotherapy goes on, a certain amount of burning sets into the tissue surrounding the target area. The bolus presses against this as well, and in my case that was getting increasingly painful. Thus the need to take my pain killers before coming into hospital to make sure that I had some relief by the time treatment started.

The radiotherapists adjusted it from time to time to make sure it both had full contact with my skin, and for comfort, but in the end, let's just say, I was friggin' glad when the whole thing was over. Pain rarely brings me to tears - but in the this case I was coming close.

Then the mask is snapped down into place on the treatment table.
Note the blue moulded pillow under my head.

5. TREATMENT TIME

Once the mask is locked down the radiotherapists press a few buttons and the treatment table starts to slide along into the machine, like a roast going into an oven. There they use some laser guides to take some measurements and make sure that your head is set at the right angle. Mine was always "90.5," (whatever that number was), or close enough that the radiotherapists would be satisfied.

Ready to go!

Then the radiotherapists ask if you feel alright. You try and grunt "yes," as they scurry away out of the machine room to the control area outside, closing the blast shielded doors behind them. All of the time they will be watching you with cameras. If something starts to go wrong and you need the treatment to stop, a quick waggle of the hand would get their attention. Once or twice towards the end of my treatment regime I was tempted because of pain, but I thought it better just to get the process over and done with.

Welcome to the Loftus Street House of Bondage and Light Perversion.

After that you just lie there, take gentle breaths and try and ignore the tight fitting mask. Sometimes they would play some music in the background, often classic hits of the 70's and 80's. Which given my age was fine by me. Treatment generally lasted about 3 songs worth.

The machine above you rotates and buzzes. You're never totally sure when the radiation beam is switched on or off. The only time I could be sure was when they were targetting the area closer to my eyeball.

Back in 1968, during the first manned trip to the moon by Apollo 8, the astronauts noted that they would get occasional random flashes in their vision, even with their eyes shut. They didn't realise then that cosmic and solar radiation was occasionally hitting their retina and inducing the little flashes.

Similarly during treatment, when the radiation beam was targetted just so, I too would get some scattering of radiation hitting the back of my eye and causing a set of green flashes in my right peripheral vision, even though my eyes were closed. I asked the radiotherapists once if the green flashing was being caused by some sort of green targetting laser, or induced by the radiation. They confirmed the latter. It only lasted a few seconds until the beam moved on.

I'm not sure that I liked the idea that scattered radiation was hitting my eyeball, but I knew of the link to the Astronauts, and thought that it was kind of cool to experience that anyway. Again, other patients may not experience it all.

I can always dream.

Lying there I would sometimes listen to the music, or think of whatever random crap happened to be floating through my brain at the time. Sometimes I felt comfortable enough that I would relax and start to drift off. You got used to the different little patterns of whirrs and clicks and hums the machine would make, and learnt when your treatment for the day was coming to an end.

6. AND YOU'RE DONE!

"Done like a dinner," as me old Mum used to say, assuming that she had a Giga Electron-Volt microwave oven and a manky cancerous roast.

That would be confirmed by the pitter-patter of the feet of the little radiotherapy elves as they re-entered the machine room and started to unclip the mask from the table. Gently they would pull it off and help you back into a seated position. It would often take me a few seconds to get my equilibrium back and stop feeling a little light-headed (or giddy with relief perhaps?)

You re-dress, give them a cheery wave and a hearty "Thanks ... see you guys tomorrow." They smile and nod. Possibly as soon as you leave they would rub their hands with glee and declare "Righto - next Victim! Mmmawhahahahahaha!" Evil little elves.

Jokes aside, they seemed very dedicated to their work and your comfort. Sometimes they would have a student or visiting doctor who wanted to check out the amazing work they were doing to possibly one of the worst tumours that they had ever seen. They said to me that it was gratifying to work on such an obvious external tumour and see the results week-by-week. I didn't disagree.

For most people that would be it for the day. Their family member, friend, bus or volunteer driver would take them home. Or they'd bugger off to the pub down the road.

In my case it was sometimes a longer wait as I had to have all of my dressings re-done by the oncology nurses, when they weren't busy. Sometimes they had horror days and I'd have to sit there for an hour or more waiting. Most of the time they would grab me within a few minutes.

Meanwhile my Cancer Carer Driver had probably died of boredom. No no - they were very patient people. Sometimes if they lived close enough and knew that I would be a while, they would give me their mobile number and bugger off home, or perhaps to pick up someone else. I'd call them when I was ready.

That was it for the day, and the next day it would start all over again. Not everyone who undergoes radiotherapy has it every day or for so many weeks, but this is common in head and neck patients.

7. AT HOME AGAIN

Once home, sometimes I would nap. Indeed as time and the radiotherapy wore on it became more and more essential.

I had one volunteer driver who had also been through radiotherapy. He was trying to run a business at the time and thought that he would just pop into the hospital for 20 or 30 minutes it would take, and then back off to work again. Then as the weeks wore on he found he would have to go home for a little nanna-nap, which became longer and longer until it ate up all of his afternoons. He had to totally re-arrange his business dealings.

For me an afternoon nap isn't a quick half-an-hours' doze. It is usually in the vicinity of 3 hours, and I still sleep through at night too. It seems like it wastes a lot of your day, but screw you Father Time!

Mother Nature is in the driver's seat and giving you what your body needs - lots of healing rest.

My Suspicions were Well Grounded

Warning! This post contains access to some graphic medical images. Within the post I've shrunk them down to small 20x20 thumbnails, but if you click them, they will take you to the full size version. You have been warned!

I'm a bit on the slow side this morning. The fatigue from the radiation therapy, strong pain killers, a dodgy kidney and liver, and a wasted body, combined with a very late night, make for a slow start to today.

I could have easily slept until midday, but I have Community Nurses coming this morning to change all of my dressings. With the tumour being external it is exposed to everything (including the general public) so every day all of the padding has to be taken off, my ear and surrounding tissue cleaned (ouchy ouchy), and finally I get all gussied back up and ready for the day. Takes about half to 3/4 of an hour. Luckily the nurses are wonderful, and they come and do all of this in my own home.

Me and my dressings. The head-net is most fetching!
Better than being wrapped in 10 layers of bandages.

However, this has not been a good week for me. "Oh here he goes," you say, "here comes the daily whinge!" Well too bloody bad. What's the good of a blog if not for having the occasional snark? However in this case I think I'm entitled.

A few weeks back I completed a 7 week course of radiation therapy on my right ear. That was pretty intense. I had to be in the hospital 5 days a week. It didn't take long - about 15-20 minutes all told for the treatment itself - but add to that the time to unpackage and repackage my head and the total was at least an hour. Assuming the nurses at the Cancer Care Unit at Wollongong Hospital weren't stupidly busy - which was often enough.

The first week consisted of some low level radiation to stop some of the pus and haemorrhaging, then after a small break, 30 treatments of high dose radiation: 5 days a week for 6 weeks.

This is the tumour as it looked before treatment. Taken by my brother 14 FEB 2014 in Wollongong Hospital. Click it for a larger viewable version.


The worst side effects were the accumulating fatigue (which will take some months to wear off) and terribly painful radiation burns to the skin surrounding my ear. They told me it would be like a bad sunburn. "Bad sunburn?" - my flabby arse! It was far worse than that as the skin dried out, cracked, blistered and bled. Of course my mouth and throat dried out making swallowing very hard on an already uncertain appetite, and my sense of taste dried up as well. (Those of you've who've seen how I dress recently would have to agree!)

The burnt areas are healing well and I'm starting to swallow better. Lost a few kilos though.

Nonetheless, with some strong pain killers (Endone and Oxycontin) it was easy enough to manage - especially when the results were so amazing. It went from a lumpy horrendous mass, to something recognisable as an ear (well, most of one.) Most weeks I would get a photo taken to document the changes. Everyone was happy: the radiotherapists, cancer care nurses, and oncology specialists. Oh yeah - and me.

This is the tumour as it looked 14 APR 2014 after nearly 7 weeks of Radiotherapy. Lots of burning, but the remains of my ear are visible and clean. Click it for a larger viewable version.

Every so often I would text my brother a copy of the latest photo. Last week, having received that, he came around one evening, a bit concerned. He seemed to think that something was growing back. I looked at some of the earlier photos and compared them to the latest. My brother had a point and that got me worried. I asked one of my regular Community Nurses. She too was starting to get suspicious.

This Monday (5 MAY) I was due for a regular check-up at the Radiotherapy Unit at Wollongong hospital. I decided to print out a single comparison sheet containing four photos - 2 of the earlier ones and 2 of the latest. To my own inexpert eye it seemed as if a new tumour was starting to bubble up along the top-front edge of my ear and down into my ear canal.

I thought that I might be in for a bit of a fight to see my oncologist on the spot, but after the oncology nurse looked at the sheet of comparison photos, my specialist was there within 2 minutes. He looked carefully at my ear. "So, are my suspicions well grounded?" I asked. He looked grim. He simply said "Yes."

The Radiotherapy was only partially successful, and the cancer is growing back.

This is the tumour as it looked 4 MAY 2014, only 2.5 weeks after Radiotherapy was complete. The "bubbling" areas at the top & front of the ear, and the nodules inside the ear-canal, are the returning cancer. Click it for a larger viewable version.

This makes me feel somewhat ripped-off as it was all looking so good. To go from the mess that it was to something that might heal up to look vaguely normal had been quite a relief for me. Now we were back to square one!

It is a Squamous-Cell Carcinoma (although I don't have a "stage number" for it yet.) I'd left it for so long that scans revealed it has penetrated the bone. I was told all those many weeks ago before therapy began that it would be a difficult case but "they would see what they could do." At that stage they didn't even really know if any of my ear would be left, or if it had all been "consumed", as they say. The initial results were so positive, so much better than anyone thought would happen, myself included.

Until Monday.

The doctors at the Cancer Care Unit held their weekly meeting and Case Conference the next day (Tuesday 6 MAY). I didn't expect to hear anything about it for at least a few days, although my brother and some other relatives rang me that night to see if there had been any result.

My radiotherapy oncologist had already made it clear that further radiotherapy was probably out of the question. I'd received the full dose that they could give me. Any more radiation beamed into my head would only have the opposite effect and cause more cancer.

As for surgery - it would have to radical, and given the state of my liver and kidneys ... not advisable.

One positive is that according to full body CAT scans a while back, and as far as I know now, the cancer has not metastasised (spread.)

Thursday evening (8 MAY) I got a phone call from my regular oncology nurse. I am booked to return to the hospital next Wednesday (14 MAY) to see a Medical Oncologist, with a view to discuss starting Chemotherapy.

In the meantime, all of my family and friends know this and I've had phone calls, e-mails and texts left-right-and-centre with lovely messages and offers of support. I suspect however that my brother will be working next Wednesday and I may have to go and see this new oncologist alone. This is not something that I'm looking forward to.

For all of the love and friendship that you have in your life, sometimes you end up standing naked and alone before the oncoming storm, and there's not a fucking thing you can do about it.

Except laugh.