Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts

Tuesday, 20 May 2014

And so it begins...

Morning funky friends,

Today is preparation day for Chemotherapy.

I have lots of fun things in store for me.

First will be the insertion of the PICC line. A "minor" surgical procedure where they thread a cannula up through a vein in my upper arm and across and down into my chest, ending in one of my major heart veins.

It's all done with smoke, mirrors, incantations to the Elephant god ... oh and some local anaesthetic, an ultrasound machine, and hopefully someone who knows what the fucking hell they are doing!!!

It all gets verified by an X-ray.

I may be getting my first dose of Chemo via a standard I.V. That should take about 90 minutes. I would confirm that but the information sheet that would tell me has gone AWOL. I know it was in my walker basket when I came home from hospital last Wed, but no sign of it now. *Sigh!* I will ask my nurse for a replacement.

And there's some sort of information session to sit through as well. It may go like:

You will learn!
"Now sit up straight boys and girls! Is that gum in your mouth Stephen Nicholson?" 

"No sister, a eucalyptus lollie."

"Well spit it now young man, or it'll be the ruler across the knuckles for you!"

 "Yes sister..."

"Godless pervert... Now children, all together now: Pall-ia-tive care ..."

All together about 4 hours. So it will be a long day. my brother Chris will take me in, but I'll probably get a taxi home. With a new funny tube sticking out of my arm.

Then, good goddess, I have to be up early tomorrow (Wed. 21 MAY) to get back to the hospital by 8:15 am to see my Gastroenterologist! Hopefully that shouldn't take long.

Never a dull moment when you're seriously ill - except for the dull moments while you're waiting for stuff.

Little Victories

Little Victories, Little Victories,
You can always count your blessings...
Lyrics from a song by Wild Pumpkins at Midnight

(Much of the following post is from an e-mail that I sent out today. So some people reading this blog will already be acquainted with the content. Some events from the weekend have been detailed in other posts.)

Greetings all,

hope that you're all well and happy.

For the moment I am. The last 3 days have been very positive all over, annoying pain aside.

Had a great weekend. Long-term friends Keith and Sharyn came over on Saturday (17 MAY) and we had a Game of Thrones marathon. We watched all 6 available episodes of this years season. Made me feel so ... normal! Just hanging out and doing stuff that had nothing to do with cancer.

There ya go great-grandad!
Saturday night I devoted to locking off some of my family history efforts. I saved the book ("The Leavetaking") I'd been writing as a PDF, and closed the Word file. That was it!

I'd bought a pile of USB memory sticks and loaded them the book, a special "gedcom" file containing the entire family tree, scans of some of Mum's old cookbooks that I had from a marathon scan after Dad's death, and copies of my family photos folders. They're ready for various cousins who are interested. Some I'll post, others will pick them up. Oh and one huge one for my brother. This is a major achievement for me - 10 years of research and 3 years of writing.

On Sunday (18 MAY)  another long-time friend Leigh came down from Sydney. She is like a little sister to me, and I hadn't seen her in 4 years. We had a great afternoon sitting about and catching up on things. After I dropped her off at the train, I came home and cried for a while. Not something that I've done for a loooooong time.

From unhappy to intense! Licence photos never lie.
Today (19 MAY) I got my drivers licence renewed. Although I expected it, there was no shit-fight over the fact that I have all these dressings on my head for the photo. Enough of my face was visible to be acceptable. And, perhaps symbolically, I bought the 5 year licence (not a cheaper 1 or 3 year). Will I get a chance to renew it again? Stayed tuned kids!

One of the more interesting aspects of my trip to the registry office was that I walked there without my Walker. I decided to give it a try as it wasn't far. I think that if the distances are still long that I would probably need it - but I handled this quite well without it.

I finally got news late this afternoon about starting Chemotherapy. I'm not happy about the chemo itself - but it's a positive sign that attempts to help me are coming along fast!!

I head into Hospital tomorrow (Tue 20 MAY) to have my PICC line installed. It's like a permanent cannula. A tube goes from my upper arm, up and into my shoulder, and across through my chest and directly into a major vein near my heart. They watch all the time with Ultrasound.

Then Thursday (22 MAY) (at 8 am - bastards!) I'm back to the hospital to be "Connected" with my 4-day portable pump of the drugs. Apparently the pump is shaped like a dildo :-) It stays with me 24/7 wherever I go.

Next Monday (25 MAY) I have to pop back in and have it Disconnected. We wait and see what happens, and about 3-4 weeks later, I'll start round 2.

And the best news of all. Last week I had a CAT scan to determine if the cancer had metastasised (spread to other parts of my body.)

It's CLEAR!

Cancer suddenly springing up in the rest of my body is the last friggin thing I need.

Anyway, Woooo-fucking-hoooooooo.! & a hearty Yaaaaaaaay!

(I know - it's just for now, but still good news.)

The fight goes on ...

Wednesday, 14 May 2014

And the results are in ...

(The following Post is based on an e-mail I just sent out to close friends.)

Not good news!
Hi there all,

not been the best day today. Went for my  appointment with the Medical Oncologist re starting Chemotherapy.

That is going to happen, probably ASAP - esp. if I start with using my private health cover. The public system is alas a bit overloaded and it would take quite a number of weeks before they could "find me chair" as the jargon goes.

With this type of chemo they'll hook me up to a portable pump at the hospital. It stays on for about 4 days, and then it's removed again. The process is repeated every 3-4 weeks. So no long sitting about in hospital twiddling my fingers.

The side-effects will probably be not much worse than the those I've already experienced with Radiotherapy - so no big surprises for me there.

The nastier news is that the cancer is more advanced than what I'd previously been told. It's gotten into the bone around my ear.

The only reason to have the chemotherapy now is to try to extend my life somewhat, and keep me comfortable.

They estimate that I have 6-12 months to live.


Because of the depth of the cancer, there is little that surgery would do except waste my time (3 painful months in hospital) in a most uncomfortable manner. The cancer would just return - and faster than before.

I'm getting a full body CAT scan tomorrow at the hospital to see if the cancer has metastasised (spread.) The less spread - the longer I get.

The few people that I've told are all saying "I don't know what to say!" Which is alright ... neither do I, although when I told him, my brother made gratuitous use of the word "Fuck" - which is probably more articulate than I've been on the subject. I'm still in shock. It's not really sunk in.

My close friend who accompanied me to the meeting jumped on the net here at home and got some information about who to contact at places like the Royal Prince Alfred Hospital Sydney Cancer Centre etc. for possible second opinions and trials - and I think for my own piece of mind that sort of thing will be worth a try. All I can do is ask around.

Anyway ... I don't think I've any more to say ... for now. I'll be keeping regular updates here.

-- Stephen




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.

Friday, 9 May 2014

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.