Showing posts with label volunteers. Show all posts
Showing posts with label volunteers. Show all posts

Monday, 26 May 2014

Tongue in the Sun

Greetings fellow sun worshippers ...

Just had a lovely day today (Sun 25 MAY)  with my cousin Jocelyn.  She came down from Sydney and arrived about 1/4 to 12, just as Lee my Community Nurse was changing my dressings.

Brave woman that my cousin is, she stayed and watched Lee clean everything up and re-dress my ear.

10 years of Work
After wandering about the house and showing it off to Joc, I gave her the fruits of my family history labour of love. A large dusty tome of the ancient family secrets? No. A pleasant little bound book stuffed with fold-out family trees? No. It was a small piece of plastic! It was an 8 Gb USB Flash Drive, containing my book The Leavetaking (which is not about her family anyway - but my mother's.)

She was so happy to get it as she has more than dabbled in the curious arts and crafts of genealogy herself - looking into her father Bob's Edwards family, and our grandmother Ena's O'Connor family. It also contains a copy of my entire Nicholson family digitised photo collection, some scans of cookbooks left behind by my mother, and my entire family history database.

It was a strange feeling that a work that if printed would fill an entire room or more, was now condensed to a few grams of plastic and silicon. In the end the contents almost completely filled the entire 8 Gb!!

After that momentous event (I fucking forgot to book the Mariarchi band - damn! Q - click your fingers quick) we headed of to the beach.

It was such a lovely warm day here (apparently reaching 27 deg C) with a nice cool sea-breeze, that we decided to have lunch down at Bulli Beach, where there is a lovely café on the headland overlooking the beach, swimming pools, rock platforms, happy families on the beach with a few braving the water, and ocean. Behind us swept an entire view of the Illawarra Escarpment.

On Bulli Beach - Panorama
That's what Wollongong is like, a slim coastal strip sandwiched between the mountains and the sea. I still remember being taught that the local Council motto means that exactly by my history teacher Father Dean back in 1979. "Urbs Inter Mare Montemque".


Although we bought it with us, I decided that my legs felt strong enough not to bother with the Walker, and the distance between the car park and café was not far. I took it slow with no problems. I ordered a Banana Smoothie (always a favourite of mine) and Bacon and Egg roll - in the hope that I may be able to taste some of it.

The egg in the roll was nice, but I couldn't taste the bacon-y power of the bacon and found the BBQ sauce somewhat overwhelming. I noticed yesterday that my tongue and gums had become sensitive, and suspect that this is a minor side-effect of the Chemo. My lack of ability to taste food is really starting to piss me off!

Joc and I sat and chatted for what seemed like ages about everything and nothing - as you do on a fine Sunday afternoon. It reminded me of the long lunches that we had many times when I lived in Sydney. Sometimes we would meet in North Sydney where I worked, sometimes in the City, and occasionally at my own stomping grounds in Newtown. When we discussed that, it almost brought me to tears. Joc suggested that Leigh, her and I should meet someday soon in Newtown for a long lunch there.

We wandered out of the café's seated area and out onto the grass in the sun. It was photo time and she took this lovely one of me with the beach as my backdrop.

My Nigerian Uncle wants to sell you this.

I snapped this quick cheeky one of her, with her commenting that it wasn't fair. Tough shit. It's been quite a while since I had an elusive up-to-date photo of my cousin.


A little wind-swept my dear?

We saw a man seated near us with a good looking camera, and assuming he knew how to use it, asked him to take my camera and get the even-more elusive shot of us cuz' together.


Lord Kodak couldn't have taken a better picture of happy Cuz'
Now, Bulli beach was much more than just a beach close to where I grew up in Woonona.
Woonona has a nice beach as well, and it has a history: Captain Cook had tried to land there 28 APR 1770 - the first place he attempted to land in Australia. Despite the need for fresh water, Cook's boats could not put in due to heavy surf.

"Saturday, 28th. In the P.M. hoisted out the Pinnace and Yawl in order to attempt a landing, but the Pinnace took in the Water so fast that she was obliged to be hoisted in again to stop her leakes. At this time we saw several people a shore, 4 of whom where carrying a small Boat or Canoe, which we imagin'd they were going to put in to the Water in order to Come off to us; but in this we were mistaken. Being now not above 2 Miles from the Shore Mr. Banks, Dr. Solander, Tupia, and myself put off in the Yawl, and pull'd in for the land to a place where we saw 4 or 5 of the Natives, who took to the Woods as we approached the Shore; which disappointed us in the expectation we had of getting a near View of them, if not to speak to them. But our disappointment was heightened when we found that we no where could effect a landing by reason of the great Surf which beat everywhere upon the shore. We saw haul'd up upon the beach 3 or 4 small Canoes, which to us appeared not much unlike the Small ones of New Zeland. In the wood were several Trees of the Palm kind, and no under wood; and this was all we were able to observe from the boat, after which we return'd to the Ship about 5 in the evening." 
Journals of the Endeavour Voyage of James Cook R.N. 1769-1771.

They gave up headed north, and the next day Cook spotted a Bay he eventually named "Botany".

Whilst Woonona had a Surf Life Saving club, at the time it had no junior section, but Bulli did!

Ever since I was born, I had problems with my right leg. A doctor at one stage suggested to my parents that I would end up in a wheel chair  - time's up, fuck off, pay the bill, and yer kid's a cripple. Life sucks!

My parents wouldn't accept an answer like that and after moving to Wollongong sought the wisdom of a local doctor who suggested that running on the sand, and swimming, could probably strengthen my gammy leg and get me walking properly without going arse-over-tit every third step.

So they put me, and my brother Chris, in Bulli Surf club:

Yellow? Painted YELLOW? Where is the classic Red brick, tinea & vomit motif?
Yes, we became members of the esteemed Bulli Aqualads - a name which could bring naught but respect and absolutely no derision at all! (You there! Yes I see you snickering behind your fingers!) We got our club speedos (aka Dick Pointers or D.P.s) and surf caps.

I have to look like this to walk properly? Gimme a wheelchair!
My brother was the natural athlete of the 2 of us - and he took to the sand and water easily. Me? I just came last an awful lot. Nonetheless, upon reflection, Surf Club was an important part of those formative years. It's values of hard volunteer work, selflessness, and ya know - trying to save people's lives - certainly had their impression on me.

The men and women with whom I associated were mostly working class salt-of-the-earth people, but in between their latest schooner of beer and fag, they had much to teach. They could party in the club house knocking back 20 tinnies of K.B. and a carton of smokes til 3 AM, and be ready on the beach by 8.

Overall though, I didn't like it much and eventually dropped out before getting my Bronze Medallion - something which disappointed my mother bitterly - around the age of 14. However, there were upsides that I found from the age of puberty onwards. I was a proto-gay-lad, not just an Aqualad - and running about with all those near naked boys helped me take on a somewhat more ... positive ... attitude.

I'll tell you a true story that no-one else has ever known.

Towards the end of the season of my final year in the Junior club (under-13s), we had our annual competition with our sister-club Cronulla Crays from south Sydney. They came down to Bulli this time.

OK, this is my 12 y.o. one -
but close enough.
That year I'd been particularly slack in the surf club, and my father and his best friend Greg Gleaves who jointly ran Aqualads had agreed that I would probably not receive my Efficiency Medal at the end of the season. (I think I was going through my first serious depression.) I was equally unenthusiastic about this competition with Cronulla.

Yes, I had medals and trophies!
Oddly I blitzed that day like I never had before - running and jumping like crazy in the sand, and entering and doing well in every swimming race. I was a regular little Iron Man for the day. This surprised Dad and Greg. They were so proud that they re-instated the Medal for me. They let me know how close I had come to losing the medal (like I gave a shit!), but could never figure out where this bout of prowess had come from.

Simple - I was 13 and horny! One of the Cronulla boys in my age group had caught my attention - he was beautiful! And he was nice too, we talked often during the competition and struck up a good friendship for the day. I couldn't be slack for this gorgeous young stud, and so I threw everything I could into impressing him.

I'm pretty sure to this day he was giving out all the right signals of his own. What could have happened had we found ourselves alone and locked in one of the changing rooms and showers in the clubhouse remained a favourite masturbatory fantasy for many years to cum.

Alas, there was no chance to do anything about it. After the competition was over, and the obligatory sausage sizzle and piss up for the oldies was done, the Cronulla Team jumped on their bus, and I never saw him again, don't even remember his name.

So there ya go! Mystery solved. The power of lust.

Oh yeah - and my gammy leg? Yes, Surf Club probably helped, amongst other things, to make sure I could at least walk properly without any hint of a problem. And I fell over a lot less.

So in honour of all of that, here is me today in front of the Surf Club.

Thank you Bulli Surf Club for all those boys in Speedos. Aw yeah - and the stronger leg.
By this stage, my strength was starting to fade, but I was desperately trying to hide it from my cousin. I was enjoying this "normal" day out. Not a nurse or CAT scanner in sight. We agreed to head home, and I rang my brother to join me there.

Chris, Joc and I sat about for a while chatting, but I couldn't stop myself from nearly falling asleep in the chair. With much sorrow I agreed to their haranguing about going to bed. I am sorta sick after all.

They left and I did indeed toddle off to bed for a deep 4 hour sleep.

Which is something I'm going to repeat right now.

What did that Cronulla boy look like? Mmmm...

Saturday, 10 May 2014

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.

Weeping Angel monsters from Doctor Who
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.