Take your PICC

Greetings early morning risers and other perverts,

This week has been buzzing along at an amazing pace. I can't believe it's already Friday, albeit at stupid o'clock in the morning. Yes, the pain is getting to me again. Which is really fucking me off because almost all of yesterday (Thu 22 MAY), I was CLEAR of pain. I don't know what magic combination of Oxy, Endone and Lyrica did the trick.

A pretty good day

Actually that's not true: I've started to seriously keep track of the pain killers, the pain, and my sleep patterns. I designed this nifty form which I keep filled in.

Bring on the chainsaw

It should help the pain specialists to figure out what to do next. But the answer doesn't seem to lie in the data. I went back to bed Thursday morning about 5 am, when I woke at 6:45 am in order to get to the hospital on time to be connected to my chemo, the pain levels were almost 0.

(I order the pain levels from 0 - nothing at all, to 10 - the
screaming mimis where I wish someone would just take a chainsaw and chop off the afflicted parts of my body. I used to suffer from severe migraines, and so know about being at pain level 10. The numbers are all subjective anyway.)

Throughout the rest of Thursday the pain levels stayed amazingly low which was quite a relief! It's only been from about midnight tonight on that the pain started to go fucking doolalley again.

I mentioned in my second last post that I was about to get my PICC line in, and also attend an education session, telling me all about the fun facts of Chemo. So on Tuesday arvo (20 MAY) I rocked up to Wollongong Hospital, ready for the fun and games. And they began.

The stylish bed

I was weighed, and given a hospital gown to swap for my jacket. I was allowed to keep my trousers on. I lay down on the hospital bed and soon enough they were at it with the Ultrasound - determining which arm had the best vein to reach close to my heart. As it turned out either was acceptable, and I chose my left arm, leaving my right arm free for wanking writing.

Then they asked me to lay flat with my left arm extended so they could begin the grizzly task of running the catheter tube, through a vein that you can barely see on the ultrasound, all the way to my heart. Of course, to get to the vein requires a hole.

I think I prefer a model plane ki

It was a bit bizarre because as I lay there, the last few days worth of shit sleep started to catch up and I found myself hanging precariously between consciousness and the realms of Morpheus. Then they started.

On the left is the actual catheter kit. There is basically a tube within a tube. The outer tube - standard translucent plastic - is just the external packaging & feeder tube. The thinner tube you can see coming out one end (esp. on right of picture) is the catheter itself - what will worm its way inside of me.

They took the measuring tape (left of photo) and tried to crudely measure the distance they would have to feed the catheter for it to reach its destination - up my left arm from just above the elbow, to my shoulder, and then across my chest to close to my heart.

So-many millimetres one of them said - as if they were like Mr. Humphries measuring my inside leg.

They covered part of me over in one of those green surgical cloths that has a square window in which the work will be done.

"Just a little prick Stephen," one of them said. Were they making fun of me? I mean, I know that I've lost some weight - but I didn't need this! I was just about to jump from the bed and call for Captain Peacock, or someone in management, when I felt the little sting of the first of 3 local anaesthetics. [Did you see what I didn't do there ... I didn't make a dick joke ;-]

Two more, and a few moments later, they were ready. It was nice of the nurses to wait for the locals to actually work!

So subtle!

I didn't see how they precisely got down and into the vein so accurately. I asked later and it was done with a very large needle and a small scalpel. The next thing they were playing with the area and feeding the catheter from its feeder tube and into my body.

I was both a little disappointed and relieved that I didn't actually feel anything. There was no sensation at all of this long thin foreign object penetrating my body [almost a dick joke]. They just kept mumbling out millimetre numbers. Whilst one fed the catheter, the other was keeping an eye on the process as best they could with the ultrasound.

A few minutes - and it was done. They were putting various dressings over the wound. I had a look. There was a little blood under the clear dressings, to be expected, but that was it! It was all wrapped in a classic long white crepe bandage, winding round and around my arm - a pressure bandage to stop any further bleeding and help the hole in my body [okok - who started with the arse jokes? hands up!] to heal.

Have selfies come to this?

The only visible sign of all of their hard work, aside from the bandage, was the thin plastic tube dangling from the dressing and floating free in space - with some sort of cannula plug on the end.

The Aliens have been eating Baked Beans again.

Once I got up and dressed, they sent me off to get an X-Ray which would look and see if the catheter has been accurately placed.

Nothing special about that - except on the way to Medical Imaging there was an odd sign that I saw on a door to the outside construction zone (Wollongong hospital is having a massive new wing added, as if the fucking place isn't already a totally illogical maze to get around.) Very odd.

I returned to the Cancer Care level, and waited for the results. Nope! Mr. Humphries had got the length of my inside leg all wrong. They had pushed the catheter through too far, and it had veered up another vein and ended up near my right collar bone.

Standard dressings for a PICC Line.

They asked me to lay down again on the bed, and took off the dressings with a view to literally pulling the catheter back out bit by bit until they had what they thought was the right length. I took few snaps during the process.

Straight to My Heart

To the left is what it will look like for as long as the PICC line is needed. It will need to be re-dressed on a weekly basis as under this it goes straight into my body - a lovely vector for an infection - straight to my heart.

Hmm, "An Infection Straight to my Heart" sounds like the next big hit for some poor Country and Western singer. She could compare luuurve to MRSA or some other super-bug infection. Classy yes?

You're like an MRSA to my Heart, Bobby-Jay

And I just want to say,

We could live in sin,

Youuu, meee, and the Van-comy-cin.

 Have we had enough of this? I sure have. Rightooo ...

Once the PICC line was re-dressed, it was off for a 2nd X-Ray. They said they would forward the results up to level 2 of the Cancer Care unit, where good old Radiotherapy lives, as well as lots of offices.

Because of the delay caused by the 2nd X-Ray, it was now getting late in the afternoon, and the Education Session that I was supposed to attend was in theory going to last 1-2 hours. I couldn't see how they would fit that in - and I was right.

When I found Monica, the nurse who was supposed to gittin' me some o' that learnin' real good now (how did this post go from "Are you Being Served" to a redneck America theme? I cant think of weirder opposites,) she confirmed that it was too late. I would have to come back to the hospital tomorrow (Wed.) ! Groan...

Luckily I had to be in the hospital again early for an appointment with my Gastroenterologist (liver specialist) Dr Rogge, so Monica organised it so that the new Education session was just after. It all worked out so well.

Anyway, the 2nd X-Ray came back good. They had the catheter precisely where they wanted it, so I finally managed to head off home.

I'll skip a long post about Wednesday.

The news from my Liver specialist was excellent. She said that it had been many years since she saw a liver bounce back so well - going from nearly useless in January, to pretty functional. She told me that I must have quite an impressive strength of will.

When I told her about the nasty prognosis and my determination to squeeze as much time as possible out of life, she was equally impressed. Hey does that make me officially an impressive person? "Pull yer bloody head in Stephen!" I hear you say. Yeah yeah, OK.

Is he Impressive?

Nah - now he is fucking awesomely Impressive!!

The Education session went for about 1.5 hours in the end - but was interesting.

It went through how the Chemotherapy actually targets the cancer. This type of cancer (Squamous Cell Carcinoma - SCC) is comprised of cells similar to our fast growing  & replacing epitheleal cells, such as in our mouths, stomach & intestines. The drugs actually target these sorts of cells, which is why, as well as hitting the cancer, they alas can cause the standard side-effects of mouth ulcers, nausea & vomiting, and diarrhoea.

I was told to expect more fatigue - great! I was just starting to get a little more energy after the radiotherapy. Bye bye that.

Was it this?

Could have been this!

The drugs can also cause a change in your sense of taste. I laughed at that one! I lost my sense of taste back in 1975 after an episode of Countdown - and it never truly recovered. Or was it an E.L.O. album cover?


Er, no. The Radiotherapy knocked it out, with no sign of it coming back yet. So I guess that Chemo taste side-effect won't really matter.

One of the more interesting things that I found out is that during the first 7 to 10 days of the chemo, my bodily fluids are actually toxic. In what way precisely was never mentioned. So after a piss, I need to put the toilet lid down and do a full flush. I might have to postpone my leading roll in the Kissathon at The Toolshed on Oxford St. on Friday night. Damn.

I have to carry sanitary wipes with me so that I don't pass on something nasty, and vica versa. My pee can burn through 10-inch steel bank vaults in seconds. Watch out for the latest weird crime spree: News at 6.


But this was an education session! I could tell because towards the end there was even an out-of-date PowerPoint presentation. Nurse Monica embarrassingly rushed through that as fast as possible.

Anyway ... it ended. Another box ticked before the real event on Thursday (22 MAY) morning.

Yawn fucking yawn! It was yet another bloody 8 am start at the hospital. Have these people no sense of civilisation??

A gentleman may sit down to pee,
But he rarely rises before morning tea!

Look Boss! De pain, de pain!

OK, the title is bad pun on a corny tag line from an even cornier old TV show. But it's 5 in the bloody morning so what do you expect? A sense of humour bigger than Ricardo Montalbán's pecs?

Yes, I've been woken by the cancer pain. For a long time it's been quite nicely under control, but just in the last 4 days or so, not long after my returning cancer was confirmed, the pain has been consistently starting to spiral up again.

Partly this may be increased tension within me after last Monday's poor diagnosis, which often adds physical tension to my body. I'm a great jaw-clencher and breath-holder even though I'm often unaware of the fact.

However, I think it's mostly that the cancer re-growth may be pressing on some sensitive areas within my ear canal and surrounds. Anyone with dodgy ears will know how stupidly painful ear pressure can be. I've never suffered it before, although my brother has, poor bastard!

As I already mentioned in a previous post I have access to some opioid pain killers, and the dosage level has been very successful at keeping me mostly comfortable thus far. If this goes on, however, I may get my arse to a doctor and see what I should do. I think I'll ring my GP's office Monday morning and see if she can squeeze me in for a quick appointment. If worse comes to worse I'll definitely be seeing this new Medical Oncologist on Wednesday.

As far as I understand it the level of pain killers that I'm taking is in fact very modest compared to what some people need, so it may not be too much of a problem in upping the dosage, especially now that it's disturbing my sleep. Parts of my last few posts were written mostly in these wee hours for the same reason. Getting up, moving about and doing something to distract me for a while seems to help. I can normally slip back into bed again after that.

One of the more interesting back-ups that I have is that I'm already connected to the local Palliative Care team at Port Kembla hospital. This was done when I was leaving Wollongong hospital back in February.

When they first told me that this referral had been made I sorta freaked out a bit. Palliative care - isn't that for, *gulp*, dying people? Is there something that they haven't told me?

It turns out that anyone who has been seriously ill, and in for a long haul illness and recovery like myself, can also be looked after by palliative care, not just the specifically dying. They make sure that all the services are put in place to keep you comfortable during the long recovery. That includes dieticians, physiotherapists, occupational therapists, counsellors and social workers, as well as doctors and nurses: some of whom have been popping in here at home from time to time to make sure that all is well.

They've done something that I've never heard of before. The team's head doctor has written some prescriptions which have been lodged with my local pharmacy (drug store). They are for emergency injections of powerful pain killers, sedatives, anti-nausea and anti-vomiting drugs. The Community Nurses who look after my dressings every day can call the pharmacy, have those emergency 'scripts filled, and come around here and jab me with whatever's needed to help.

Of course, that doesn't help me at 5 AM on a Sunday morning when everything is shut. There is however a magical mobile number I can call at any time to ask an on-call Community Nurse to come around. I don't think it will go that far this morning. I've popped a full Endone and will wait and see what it does. Soon I should be comfy enough to slide back into my toasty warm bed.

Ever since I came out of hospital nearly 3 months ago I've actually been sleeping quite well. I don't want those restful sleep cycles disturbed. Normally in the past I've been a pretty crap sleeper with bouts of insomnia. Or for the last 4 years I've not been sleeping as such, more passing out from the booze. I'd forgotten what good sleep is all about.

Anyway ... the pain seems to have calmed down a bit, so I might try and get back to bed. I can hear Kookaburras in the distance already singing their morning-song. Luckily I don't have anything happening until about midday when my Community Nurse will pop in and change the dressings on my head, and if need-be, I can nap again later in the day.

As the old song goes: "Laugh Kookaburra, laugh! How gay your life must be ..."

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.

A Bottle a Day

I could start at the very beginning. I've heard that it's a very good place to start. But that was all so long ago it would be a stupendously boring exercise, for both you and me, to try and fill you in on all that tedious historical bumf. Details may emerge over time but for now, let's jump straight in!

I'm having a tough time of things at the moment. "Whoop-de-fucking-do!" you might think - and with good reason. "What's so friggin' special about you? We all go through the shit." True again. That's the way life is. I tend to think that anyone who claims to be having a perfect life is lying through their arse, or needs some serious pills to make their delusions go away. "I'm fine. Just doing fine," is probably one of the most common lies that we'll ever hear.

So, here's the quick ha'penny tour of what's led me to the point of starting this blog and getting some things off my greying not-so-hairy chest.

Depression, Despair, Alcoholism, and Cancer. This is a pretty nasty combination of balls of shit to juggle, although I seem to be keeping most of them in the air, if somewhat inexpertly.

"An apple a day keeps the doctor away," goes the old saw, but I can tell you from bitter experience that a bottle of whiskey a day is an emergency ambulance ride straight to a hospital or morgue just waiting to happen.

I made it to the hospital just in time, and narrowly escaped the further trip to the chilly hospital basement with a dangling toe-tag.

On the night of the 20th of January 2014, I collapsed here at home in a mess of my own making. The house stank of an unwashed human and his clothing covered in sweat and rotting cancer pus, empty whiskey bottles and putrefying leftover food on filthy plates covering the lounge-room floor, and an overflowing garbage bin in the kitchen. The bills were unpaid, the blinds were never opened, and the floors (what could be seen of them) hadn't been acquainted with a mop or vacuum-cleaner in months.

My daily routine had consisted of vaguely waking before noon, lazing in bed reading the web on my laptop for a few hours, staggering to the loo and getting some clothes on (with diminishing amounts of success and coverage), grabbing another bottle of whiskey from the recently home-delivered box, plonking myself into my favourite comfy-chair, turning on the TV to stare at some shite or other, and slowly (or not so slowly) pouring glass after glass of my favourite pungent poison. Sometime during the late evening I would pass out for a while, then after coming-to, stagger back to my smelly unmade bed, and sleep through to the daylight - when it was time to start my hopeless ritual all over again.

This went on for four wasted years.

On the night in question, however, it all came to a head. My body took over with a mighty grunt of "I'm sick o' this shit!" and whilst trying to get up for a piss, I lost balance, went crashing to the floor on my back, and found that I no longer had the strength to roll over or get back up. I was like a freshly sprayed roach - legs a-twitching in the air, but getting nowhere.

I may tell more of this tale later, but in summary,  sometime the next day I managed to find the strength of will to inch myself across the lounge-room floor (taking 2 hours), getting to the telephone table, pulling down a handset, and dialling for an ambulance. I was rushed into the nearby Wollongong Hospital with liver, kidney and heart failure.

As if that trifecta wasn't bad enough, I also had Cancer - but I already knew that. My sense of utter and total neglect had known no bounds!

What had started as a small sore spot on the top of my right ear four years prior was now a stinking, oozing, hemorrhaging, massively infected clump of tumours covering the ear and surrounds. The ugly blossoming nodules had invaded my ear canal and cut off my hearing, making my snazzy surround sound system seem like a bloody great pointless joke. Every time I sneezed or coughed I bled everywhere, and when I wasn't bleeding, filthy brown pus was leaching out and dripping over my clothing, and anything else really. Everywhere you went in the house there were towels lying about covered in blood and crusty dried exudate. I had given up on attempts at bandaging a long time back.

I suppose that the fall at home may have been the best thing to have ever happened to me.

Whether I personally wanted it or not, I was now in the hands of the medical professionals, and too weak and ill to protest. I couldn't walk, could barely talk, had a tube stuck up my dick and others into my arms, the hallucinations came and went, but I was where I needed to be - wrapped in the arms of the Australian public hospital system.

This blog is about not-so-mighty ogbo's crawl back from the edge of the grave, the last nails not quite pounded into my coffin. In some ways I'm sicker than I've ever been in my life, but perversely I think I've never been healthier.

The news on my cancer is not as good as it could be, and I'll be writing about that shit-fight as it happens, and what's already transpired. There are also other battles deeper within which I'm facing - and I'll be having a bit of a natter about those as well. As well as anything else which seems to come to mind.

It's early in the morning now, and my crappy body is closing down and nudging me off to bed. More later my fellow masochists.