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

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 ..."

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.