Unable to speak…

Unable to speak, I could only scribble short messages on writing pads my wife provided. During the day she would transmit my questions and requests to the nursing and medical staff. But looking over those notes, which my wife saved, I can see that constantly scribbling messages, many of which were of no conceivable importance, was my desperate attempt to maintain contact with the world. At night, when I seemed most in need of ventilatory support and suctioning of my mouth and respiratory tract, the nurses would try to understand my written requests and do their best to comply. My neck pain was often severe. I asked for the least amount of morphine to relieve it, because I wanted to remain alert. I feared morphine would suppress my respirations and increase the possibility of pneumonia. However, the record shows that in the first two or three days I received considerable sedation and morphine.

Despite the medication, my physical distress and utter helplessness made these first days in the ICU a terrible ordeal. I survived by concentrating on each physical problem. My life hung in the balance, as did the risk of quadriplegia, but I did not think much about these threats because I was totally concerned with relieving my immediate symptoms.

Worst of all were the endless nights. I slept very little and spent most of the time watching the minutes go by on the big wall clock in my room, waiting for daylight and the return of my wife, and other family members. They tell me that I seemed more affectionate than usual; perhaps it was because I needed them so much.

In “On Breaking One’s Neck” (The New York Review of Books, 6 February 2014), ninety-year-old senior physician Arthur Relman describes his experience of the hospital system.  Critically ill after a fall in his home, he has had a tracheostomy and describes the “physical distress and utter helplessness” and the “endless nights”.

Two-and-a-half years have passed and yet I vividly remember “watching the minutes go by on the big wall clock” and, when I finally dozed off, waking to find that only three or four minutes had passed.


Rachel’s lovely life

My friend Rachel passed away yesterday.

I only got to know her earlier this year, through our blogs and through a lovely train of emails that I’ve just read back through.  She was so caring, thoughtful, generous and loving.  I admired her immensely for the way she dealt with recurrent cancer (breast and eventually brain cancer) and the way she cherished her little family.  In one of her emails she said: “I love how you ‘get’ the love for our girls, it’s so intense when you fear for your life, their beauty and innocence is simply magnified and I love being able to see it.”

I’ve thought of her so often over the last few weeks and I just realised I only emailed her yesterday morning to wish her Merry Christmas.

I only just got to know you Rachel and I’ll miss you and your wise, funny, beautiful words.

Zebras not horses

Learning about my latest surgery complication yesterday. Ear canal this time. #marsupialmum

Among the things I’ve learnt on this crazy adventure is that I, and I alone, am truly responsible for my health and care. I can assemble a wonderful team, but I am responsible for following up, asking questions, and making choices.

Much of my thinking on this crystallised when I read Jerome Groopman’s wonderfully thought-provoking How Doctors Think last year. It is no over-statement to say it changed the way I understood how doctors think.

General Practitioners see many patients with the same symptoms and illnesses day in and out. For apparently ‘routine’ illnesses, doctors cannot assume that each instance is more sinister than it appears. “When you hear hoof beats,” they learn, “think horses, not zebras.”

Which is all fine… until you are the zebra… or at least a horse of a different colour…

This is a bit of a long and rather icky story.

Back in late April, I had my first outer ear infection in my left ear.

I’ve had my fair share of middle and inner ear infections. Perhaps more than my fair share? Ear infections, like throat aches, have always seemed to be just the calling card of the common cold for me. But never an infection in the outer ear.

My GP*, Dr O, said the outer ear was so inflamed that she couldn’t see down past it. Had I been in a pool recently? Yes, but not under water. Could it, being in my left ear, be related to my jaw surgery? She thought it nothing irregular. I was on my way with a prescription for the antibiotic ear drops that all GPs order first (Sofradex) and a few days later I was fine.

Then it happened again. Two months later, in late June, it was back. Only this time, I lost the hearing in my left ear and it started to, um, discharge. Delightful experience, of course. Especially when you are in an aeroplane holding a tissue to your ear because lift off and descent make the rivers run. (How lucky that I have no dignity left to worry about on this blog.)

After two GP visits, a new type of ear drops (Ciproxin), an ear ‘flushing’, and two rounds of oral antibiotics (Augmentin Duo Forte) later, Dr G decided it was time to send me off to an ear, nose and throat specialist and take a swab from my left ear to send off for analysis. He even was so lovely as to make an urgent booking for me with Dr F, a specialist in otology.  Otology, as it turns out, is the study of the anatomy and physiology of the ear and the diagnosis and treatment of ear diseases.

And that’s how, in mid July, I found myself in Dr F’s surgery with a positive swab result for Aspergillus, a nasty little fungus, and confirmation of my fears. It’s little wonder the GPs couldn’t see down my ear canal, Dr F noted as he examined my ear canal. Your regulation ear canal is 9mm wide. My ear canal? A mere 2mm. The scar tissue from my jaw surgeries, Dr F believes, has contracted around my ear canal and narrowed it.

An ear canal this narrow means that any tiny thing can get itself wedged in there and become infected. Dr F also could not see the ear drum and could barely get his sucking equipment: another delightful and downright painful experience. In my case, the antibiotics to date had killed off both the bad and good bacteria and left me open to fungal infections like Aspergillus.

Unfortunately, he continued, I could well be looking more surgery. This news must have been a bit too sobering. I burst into tears.

It’s hard to explain. In a way, I’m quite used to this old surgery lark and I will handle it just fine when it happens, if it happens. And yet. And yet, surgery and recovery sucks. It’s not just the physical pain; it’s the dragging consumption of time, days, months, in recovery. There’s nothing fun about surgery.  It’s both a marvellous thing and a terrible thing.

After that first visit, Dr F sent me away with my third batch of eardrops (Lococorten Vioform).  This is, one might say, the mother of all ear drops.  It took a bit to massage the drops down my diametrically challenged ear canal, but then it felt like acid burning  through my middle or inner ear and then down my throat.  A point I mentioned on my second visit, to which dear Dr F replied that this indicated I had a hole in my ear drum and he was taking me off the drops immediately.

The good news is that the mother drops cleared out much of the infection and a hearing test showed that the only continuing loss is at the upper and lower registers.  To me now, three weeks after my second visit, it seems the hearing is almost back to normal, although I still find I hold the phone on my right ear when I used to hold it on my left ear.  After a month of ‘wait and see’, I’m due back in a week or so for Dr F to determine where we go from here.

* Alannah and I go between three GPs at our clinic: Dr O, Dr G and Dr J.  We spread the love but then we are there often, indeed weekly at the moment.

The year mark

9 May was the one year anniversary of initial diagnosis.

And today?  One year since THAT surgery.

iPhone shots, early morning, 1 August 2012
No filter, just the glorious morning light in our apartment
Necklace from Danielle

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One year

Today marks one year since I was diagnosed.  One long, testing, amazing, roller-coaster, reflective, challenging, herculean, interminable, silver-lined year.

On 9 May last year, my mother had spent the night with my grandfather, my last surviving grandparent, as he died.  I saw my dentist at 8.30am and, within an hour, knew something was wrong.  Very much wrong.  At 2.30 that afternoon, Darren and I went over to see Dr S, my first maxillofacial surgeon.  It would be another month until we knew the tumour was worse than the worst case scenario he outlined that day.

I haven’t been here on the blog much recently.  In part, that’s because I’ve been busy between three different jobs as I wend my way back into the workforce.  And in part, that’s because I started seeing a psychologist.

February and March were tough.   Re-entering the ‘real world’ from the cocoon of ‘being sick’ was hard.  Recovery had allowed me so much time to contemplate and take my time.  I could pace myself, nurture myself, and protect myself.

The real world wasn’t so kind.  Where once my crutches, my wired jaw and my swelling were there for all to see, my situation stopped being front-of-mind.  There’s still internal scarring of course, but only the more perceptive see or remember that.  I found myself struggling in conversations that were about the trivial or that trivialised the traumatic.  Compounded by the pressure of work, I wasn’t coping.

It’s not that returning to the real world was a bad thing.  It just required adjustment.  I decided I need help.  My GP referred me to a truly lovely psychologist, Dr M, who happens to practise in my street.  I saw Dr M for my sixth and final appointment today. Talking with her has meant I haven’t needed to write here as much.

So I am still around.  I’m just doing well now.  Really well.  We are both excited to be changing jobs this month, I’m enjoying my Tuesdays with Alannah, and we’re making plans.  I’m carving out time to read again.  I’ve also taken up running again, in the early morning before Alannah gets up.  It’s good for the soul (and the body) and a way to start the day that’s all about me.  We are finding a lovely balance in our life.

It’s been one long year.  But remarkable, so very remarkable.

Low threshold

When I last saw my plastic & reconstructive surgeon, one comment stuck with me.

Have a low threshold, he recommended.

We were talking about recurrence and monitoring.  I have a stabbing pain in the joint just below my ear and I’ve not had a scan – xray or CT – since December.  If I’m worried by symptoms and it doesn’t feel right, I should have a low threshold for requesting a scan.

I like that philosophy.  Alannah often chooses – chooses, I tell you – to get symptoms of impending sickness on the day before a public holiday.  Just before Christmas and just before Australia Day.  Like clockwork.  I always end up in at the doctor’s saying that she’s not really sick yet, but if I don’t get a prescription today, she’ll most certainly be sick tomorrow.  And I feel like the over-reacting first-time mum.  It makes me feel better to think of it as the ‘low threshold’ approach.

Which brings me to the stabbing pain.  Before the titanium plate was removed from my jaw in mid-January, I had a strong constant pain in the ‘jaw bone’ left of my chin.  That has gone, replaced by the pain in the ‘jaw bone’ joint below my ear that I mentioned.

Last week, I decided enough was enough.  I called my oral surgeon to check at what point I should worry about the pain.  My lip has also lost function since the surgery and, at the time I called my surgeon, my face was more swollen.  The swelling can fluctuate depending on how I’ve slept.

Removing the plate, he said, has removed the support for new jaw bone.  The stabbing pain is, in fact, a good sign.  It’s the nerves getting used to the increased load my jaw now bears.  The jaw bone is working hard, building in size and strength.  It’s not unlike a fever in a child, as I understand it: it seems bad but actually shows the child is fighting off the infection.  The surgery also interrupted the lymphatic flow all over again.

The verdict?  The pain should get better week on week and month on month.  I should worry if it gets worse.  It could also take months for the swelling to subside again.  As for the lip function, he suggested I do exercises, like using a straw or blowing up a balloon.

Time is a great healer, he reminded me.  I forget that I’m only six weeks post op.  Patience, patience.

Surgery photos

Are you ready?  These photos are in your face.

Well ok, they are in my face.

And yet, I wasn’t shocked.  It must be surgery-fatigue.  I’m not even shocked anymore.

But I didn’t want some poor soul happening upon this site by accident and being greeted by my dissected neck.  With their morning coffee.  It’s a bit much.

To see my latest surgery in all its technicoloured glory, you have to click on these two links.

Plate held against my dissected neck after the operation

Close up of plate held against my dissected neck after the operation




It’s lovely to have you stop by.

On 6 May 2011, I found a strange lump inside my mouth.  Three days later, my dentist sent me for an x-ray that confirmed a ‘cyst’.  The cyst turned out to be a tumour.  The tumour turned out to be ameloblastoma. The ameloblastoma turned out not to be cancer.

But I’m getting ahead of myself.  By 31 May, the day after my first biopsy, I just knew this was going to be big.  There was already too much information to track, too many people to tell, and too much everything to digest.  I started this blog to clear my head and share news.

But that’s enough about me.  Why are you here?

Are you or a loved one facing ameloblastoma?

It’s daunting and confronting, I know, but you.will.be.fine. You will come through this and you’ll find you are so much stronger than you thought you were.

Feel free to browse and please: join us at the ameloblastoma group on Facebook.  Between them, they’ve felt and seen it all before.

Are you interested in the immediate recovery after a mandibulectomy and mandibular reconstruction?

You might like to start reading here.  It’s the first post that my husband wrote on the day of my surgery, just after he had spoken to my oral and plastic surgeons.

He wrote many of the posts in Phase 3: Hospital that covers from the day before my surgery (31 July 2011) until I left hospital 10 days later (10 August 2011), as well as my mum’s photos and my reflections on my ICU stay.

Are you wondering why there’s now an introduction?

The lovely C, the speech therapist who visited me the night before my major operation and whose colleague F was my treating therapist, asked to share my blog in their daily email to staff at another hospital as part of Swallowing Awareness Week. There has also been a trickle of messages from people diagnosed with ameloblastoma. I thought a little welcome message might help with directing traffic so people can get where they want to go.

Thank you for reading.

I might not be posting as often, but I’m still around and will get back to you as soon as life allows. You can also contact me at marsupialmum at gmail dot com.

Marsupial Mum

Another surgery. And why not?

Today is one month since my fifth surgery.  Five surgeries in the nine months since I was diagnosed with a tumour on 9 May 2011.  (The precise diagnosis of ameloblastoma did not occur until later.)

Sometime in late March, I will have my sixth surgery.  No more counting them on one hand.  Indeed, I may have hit double figures for surgeries in the eight years that Darren and I have been together.

What fun surgery awaits us now?

I will lose the back tooth on the top left (tooth number 27) and the fibula flap below will be cleaned up, to use my surgeon’s euphemism. I can choose between general anaesthetic and local anaesthetic in the chair.  I’ll likely opt for the chair, as I did for the removal of my wisdom teeth back in 2006.

There’s been a niggling soreness right at the back of what used to be my gum.  It felt like a blister on the back of your heel being continually irritated by your shoe.  It was worse in the afternoon and evening exacerbated, I thought, from talking too much.

Not too far off, as it turned out.  I am suffering from hyper keratosis caused by masceration of the fibula flap that replaced my left lower jaw.  Yes indeed, I’m biting myself.  I don’t have much feeling in the area except right at the back.  (The sensory nerve, as you may recall, was removed in my mandibulectomy.)  The back tooth at the top, for want of teeth to push against, is destroying the soft tissue that they’ve fashioned into a sort of toothless gum.

It’s not pretty.

Out with the culprit tooth.  Out, out, I say.

The first available surgery date is not until sometime in late March.  Stay tuned.

And for those hanging out to see the charming photos from my recent surgery, I’ll have them up here soon too.

One week later

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It’s been one week since the operation to remove the titanium plate from my jaw.

This is how I looked on Sunday, the day I came home from hospital. The monochrome hides quite how awful I looked, but let me tell you the skin around the left eye was yellow and puffy.

By Monday morning, my eye was swollen shut. It took several hours for the swelling to go down enough for me to see out of the eye. While the area around my left eye still swells overnight, it is markedly improved.

The anaesthetic knocked my sleeping around again. I was too tired to function, but not sleepy at night and I lay awake for hours. Bless Steve Jobs’ cotton socks for the iPad. And bless whoever invented painstop, the children’s pain medication with a sedative. I used to take it instead of Panadeine Forte back when my jaw was wired shut. It has done the trick over the last two nights and I am feeling much more human.

I’m still taking two lots of antibiotics and Panadeine Forte/Painstop. Those prescriptions finish up today or tomorrow. Each morning, we remove the tape over my new neck dissection wound and Darren cleans and re-tapes it. Tomorrow, we head out to the hospital clinic to see my surgeon, Dr P, and find out what’s next.

Question… How do you feel about photos of the operation?

I have some photos from this operation.  (I must bug him again for the photos from the big operation last August.)  Would you like to see them?

They are not for the faint of heart.  I was thinking I could put them up on a separate page on this blog and you would have to click through to see them.

No surprises on the main page when you are bleary eyed with your morning coffee.  Promise.