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.