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!

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

Squamous Cell Carcinoma or Melanoma?

It's been pointed out to me that Squamous Cell Carcinoma (SCC) and Melanoma are likely to be mutually exclusive - my cancer can't be both.

In the emergency meeting that I had with my radiotherapy oncologist last Monday (5 MAY) in which it was confirmed that the radiotherapy had failed and different treatment would be needed, he definitely mentioned that it was SCC ("very difficult to treat," he said.)

However, earlier on in the piece I'm pretty sure that Melanoma was mentioned. If it was however, it was back in February when I was still in hospital, and my brain cells weren't exactly firing on all thrusters.

I'll try and get this clarified on Wednesday (14 MAY) when I meet with my new Medical Oncologist re Chemo.

I'll adjust the original blog posts as necessary to make the information as accurate as possible.

Bare with me. This is all very new and strange.

*** UPDATE 14 MAY 2014 ***

I've had a meeting with the new Oncologist - yes it is definitely Squamous Cell Carcinoma (SCC).

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.