Pre-admission testing

There is one week to go and the race is on.  We have entered the sprint section of proceedings.

Over the last two days, I’ve had blood tests, a chest x-ray, an ECG (electrocardiogram), another MRI, another OPG (orthopantomogram), a general checkup, and my pre-admission clinic appointment.

The point of the blood tests, chest x-ray, ECG and physical checkup is to ensure I’m ready for them to slice and dice me for 10 hours or so.  Good respiratory function, good cardiac function and, they hope, no nasty surprises.

To that end, I also had a general checkup with my consultant physician, Dr L.  She will be responsible for my recovery.  In particular, she’ll be there to catch any infection early and treat it.  She listened to my heart and felt the lymph nodes under my arms and on my neck.  She’ll check on me each day, either early or late, she said.

Blaster also had a checkup, courtesy of the MRI and OPG.  They will show if she’s grown, wreaked further destruction, or been otherwise nasty.  For tumours, the MRI has the advantage over an x-ray (like the OPG) of showing good contrast between the soft tissues.  Of course, this is thanks to the contrast dye with which they inject their victim.   Not my favourite part, but I behaved myself today.  Not a single tear.  A little victory.

And, of course, no week is complete without paperwork.  At the pre-admission clinic, one of the clinical nurse consultants checked through my admission paperwork and gave us the opportunity to ask more questions.

They will probably call me on Friday afternoon, she said, to advise when I’m to be admitted this Sunday.  I’ll be on the ward that night, then in intensive care from the Monday night for about a week.  Unlike in public hospitals, I’ll have my own room in intensive care.  The walls are glass so they can keep a close eye on me, but I shouldn’t be disturbed by other patients.  The visiting rules for intensive care are family only but, she said, they should be flexible with visiting hours for Darren if he explains about Alannah.  (She won’t be visiting at least until I’ve had the tracheostomy and nasogastric tube removed and I’m up on the ward and, even then, we’re going to play it by ear.)

A few of you have asked about visiting in hospital.  As I said, the hospital’s visiting rules for intensive care are family only, but you’re very welcome to visit when I’m up on the ward.  Please remember I’ll be drooling and won’t be able to talk much, so have low expectations!  Visiting hours are 11am to 8pm.  The phone number for Macquarie University Hospital is 9812 3000.

Here are some photos of the ward rooms, courtesy of the hospital website.  There’s a small wardrobe and fridge over in the right of the photo and the ensuite is off to the left.  The computer “cockpit” is very cool: television, movies, radio, internet, telephone, as well as meal ordering and medical records.  No meal ordering for me of course.  Just slush and mush on the orders of my dietitian and speech pathologist.



I’m getting together my belongings for my little jaunt.  I’m going to load up the iPad with some podcasts and music.  I’m contemplating some audio books.  I have a pile of books to take too and some others I’ve ordered on their way.  Any genius suggestions welcome.


The Plan – Part 1

Today brought our post-op appointment with Dr S to talk brass tacks.  He has been very reluctant to discuss the heavy stuff over the phone, but he has certainly been busy on my case.

But first, a bit more on my new friend Blaster.  The pathologist got up close and personal with her under the microscope.  There are four main types of ameloblastoma – cystic, solid, soft tissue and malignant – and my girl’s the solid type.  The pathologist does not think she is malignant. What she does have is “concerning characteristics”.  She “exhibits basaloid features with evidence of apoptosis and occasional mitoses” but “unequivocal malignant features are not observed”.  Once we part company, she’ll be finely sliced and diced just to be sure.

Here’s a picture of her when we first met.  She’s in my left posterior mandible which, on the x-ray, is the bottom right hand corner. (Ignore the black pen line. Dr S was mortified one of his students has drawn on poor little Blaster.)

Dental x-ray - 9 May 2011

But, of course, the question is what to do about her?  There is really only one option, he said: resection.  The entire tumour must be surgically excised.  Even though she is solid, her borders are not perfectly defined and a margin around her must also be removed.  That’s 1cm give or take.

Here is Blaster again in technicolour.  She is ringed in turquoise.  She extends further than is obvious on the first x-ray, indeed into the soft tissue below the second back molar.

Dental x-ray with mark up - 9 May 2011

The approximate borders of the resection are in pink.  Yes, ouch.  It’s all got to go.  The soft tissue, the jaw bone (such as it is), the nerve that allows me to feel the left of my lower lip, another of the back teeth.  The further back of the two teeth I have circled, known affectionately as mobile tooth 37, was removed during the biopsy.  Mobile because her roots had been eaten away and she had the wobbles.  So one down, one to go.

Then comes the reconstruction.  There’s not a lot of bone left now that Blaster has had her fun.  They will need to insert a titanium plate to hold me all together and graft a bone from either my hip or fibula (lower leg).  At some later stage, he said, they can refine here and there, implant teeth or fix up the symmetry of my face.  Luckily, as Deb pointed out, my super model days are already over.  Phew, one less thing to worry about there then.

The good news is that, contrary to what seems to be the experience of the American kids on my facebook group, this should not be long and drawn out.  It’s likely a single surgery for the resection and reconstruction over about 5 hours.  Thankfully, with proper resection, the likelihood of recurrence is very low.  Again, not the experience of my new American amelo buddies.

I’m looking at a 2-5 day hospital stay, followed by a few months recovery.  I’ll probably be out of sorts for a week or two.  He suggested Darren taken two weeks off to look after me.  (Aww bless.)  I’ll be on a liquid/puree diet for about a month, then soft foods for quite a while.  All going well, I should be looking fairly normal within a month or so.

Now, I said Dr S had been been busy.  It turns out I am not that much younger than his wife and he has been thinking what he would want for her.

The big decision is where to be treated.  While I could continue to be treated in the public system at Westmead Hospital, his experience is in the less nasty end of jaw tumours and we would no longer be under his wing.

Ever thoughtful, he runs through our options.  He is keen to help us decide and smooth the way for us.  He would like to refer us privately to another oral and maxillofacial surgeon with greater experience.  He has in mind a surgeon with whom he has worked and for whom he has great respect, let’s call him Dr P.  Dr P operates in Sydney out of the swanky new Macquarie University Hospital.  He is happy to refer us elsewhere if we wish and has a second name for us, a surgeon he has heard good things about but does not know personally.

Should we get a second opinion? He doesn’t think so.  While it is not cancer and there is no rush, he would like the surgery to take place in the next 4-6 weeks, if not sooner.  No rush then!  With a tumour of this size and aggression, there really is no option other than resection.  The priority is to get it all out.  Soon.

Great, we say, let’s do it.  Always one step ahead, he has spoken at length to Dr P about our case and secured an appointment for us at 2.15pm tomorrow.

It’s sad to farewell Dr S.  He’s been a gem.  He says he’ll keep an eye on me and how it all goes and we have his number.  Bless his cotton socks.

So my dear readers, to be continued… See you back here tomorrow, same time, same place.

Note to self, I might call my mother first though.  In my pitiful defence, it’s been a sucky day with pain.  I have been sucking down the pain killers more than I care for and I went back to bed this morning and again this afternoon.

On a brighter note, Alannah had a wonderful play date with Maxie and Adi.  Big thanks to Tash for looking after her and Deb for pulling her dusty self out of bed after mothers group dinner last night to join them.  What would I do without you all?

To begin at the beginning

I have a tumour in my jaw.

Not cancer, the surgeons assure me.  While they believe it is benign, it is large and aggressive.  Aggressive is their word for destructive, the tumour having already stretched and eaten into the mandible bone in my jaw until paper thin.

It is not the worst news, but it’s not good news either.

It’s going to be a long road though – at least 12 months, leaving aside possible recurrence – and I’m not entirely sure what to expect.

A biopsy is the only way to diagnose for certain, but it’s likely either a keratocystic odontogenic tumour or unicystic ameloblastoma.  If that’s the case, the plan is to “marsupialise” the tumour: it should shrink of its own accord over 8-18 months if exposed to the mouth with the wound packed with an iodine-bismuth pack and held together with a few stitches.  They then plan to surgically remove the tumour and any surrounding “daughter cysts”.

Here’s what has happened so far…

Late March 2011

  • Pain in my tooth, or maybe my jaw.
  • I am due for my six monthly dental appointment.

8 April 2011

  • I tell the dentist that my left back tooth is really sore.  He asks if I am flossing.  Yes, I say, but I think I am missing the back tooth on each side.  I only need to floss the teeth I wish to keep, he jokes.
  • He takes an x-ray of my teeth, the x-ray that was overdue as I was pregnant at the appointment before last. As it turns out, the x-ray is only of the teeth and does not cover the gum or bone area at all.
  • For the next month, I determinedly floss all the way to the back every night.  The pain does not go away, but I figure that it is self-inflicted so I don’t complain, even to my husband.

6 May 2011 (4 weeks later)

  • In the evening, I feel around the sore back left tooth and discover a lump.  I can’t tell if it is on the gum or the cheek but it is definitely a lump.
  • I enlist my poor husband to have a look.  It’s definitely a lump.
  • I’m worried it’s a tumour so he suggests I call Health Direct.  The nurse says it is likely an abcess but I should see my dentist as soon as possible.  It being a Friday, I should see a doctor in the interim.
  • I leave a message on my dentist’s answering machine asking for an appointment on the Monday.

7 May 2011

  • The doctor thinks it is either an abcess or a blocked saliva duct.  He definitely doesn’t think it is a tumour as I fear.  He prescribes antibiotics.

9 May 2011 (initial diagnosis)

  • The dentist squeezes me in at 8.30am and has a good feel around.  He assures me the lump was not there four weeks ago and sends me down the road for a full mouth scan.
  • As I take the scan back to my dentist, I take a peek.  Even I can tell there is a black growth on one side and not on the other.
  • It’s a type of cyst, my dentist tells me.  It’s not good.  He calls around and gets me an appointment with an oral surgeon for the early afternoon.
  • The oral surgeon, Dr S,  confirms it is a type of tumour and runs through the options.  The only way to diagnose for certain is a biospy.  In his best case scenario, the tumour will shrink through marsupialisation over 8-18 months and then be surgically removed.  In his worst case scenario, he will need to remove a large section of the jaw and replace it with a titanium plate, etc.
  • I have a CT scan.
  • We both like this surgeon so decide to go with him, even though he operates out of Westmead Hospital in the west of Sydney and around 40 minutes drive (at best) from where we live in the east.

12 May 2011

  • We see the oral surgeon again.  He shows us the CT scan.
  • We decide on a plan.
  • The biospy is scheduled for 30 May at Westmead Hospital and we need to go out on 24 May for pre-op administration.

24 May

  • We meet with Dr S and a second oral surgeon, Dr D.
  • They now think it may be the worse of the two options because of the nature of the growth but, again, emphasise that it is all speculation until the biopsy results.

30 May 2011 (3 weeks after initial diagnosis)

  • Biospy under general anaesthetic at Westmead Hospital.  Day surgery only.  With Dr S and Dr D.