Operation!

You're the doctor having so much fun
Operation!
You're the doctor got the patients on the run
Operation!

I have to admit I don't remember seeing 'thymus' on the organs to remove from this patient in this game, but I did enjoy playing it when I was younger.  And at times during my long wait I did have this song in my head. 


Anyway, if you don't like reading all you need to know is that the operation was a sucess (ie, they got my thymus out using a robotic and minimally invasive method).  I have to wait up to a year to see if there will be any changes in my symptoms for the myasthenia gravis.  For those who like reading, below is a blow-by-blow account of the operation!


Day 0: Dave and I arrived at St Vincent's public hospital at 06:30 to be told that I had been cancelled from the operation list.  Well that was true as far as they could tell and that I should just sit over there and wait. After a 1.5 hour wait Dave urged me to go and ask.  No change in information.  A short wait later and we were back on.  By 09:00 I had a hospital bracelet on my wrist and by 09:30 I was in a gown barely covering my dignity. I spent some hours languishing around in a bed waiting with a whole lot of other patients and then when the theatre staff 'found me' they whisked me up to the operating suite (apparently I was lost and this will not be the only time this will happen).  I think this was about 11:00.  I waited and waited and waited. So long I got to experience my first bed pan.  Anyway eventually the surgeon turned up, consented me (nurses cannot do this), the anaesthetist gave me some drugs (assuring me that I was just to take his bill to medicare for payment - how good is public hospital care?).  And before I knew it I was awake in the intensive care department (ICU). I am sure if David could tell this story it would involve a whole lot more waiting and another story of me being 'lost'!

You can see me clutching the PCA

The first thing I did when I woke up was feel my chest to see if it was still in tact. Woo hoo!  I was told that I had three small incisions, two of them had drains coming out of them (all in all three drain tubes).  I also had a Patient Controlled Analgesia (PCA) button to control my pain - it was filled with morphine goodness.  It took a while to get the PCA going, but in the end I mastered. I don't remember much of that evening, except David being there faithfully and my parents fleeting visit.  I also remember the nurses telling me to 'breathe Kate, breathe'.  Apparently the morphine slows your breathing right down and sometimes you 'forget' to breathe.  


Day 1: In the morning they took my PCA off me (and my catheter)!!  And I was able to sit in a chair to eat my breakfast. I was also able to vomit that breakfast right back up again.  Everywhere.  It is common for the morphine to make people sick and this time didn't disappoint.   They moved me to a lower care ICU bed, but only because they couldn't find me a bed on the ward.  I shouldn't complain because here I was getting one to one care - but I really wasn't sick enough to be in ICU anymore.  Over this day they delivered small amounts of morphine through my central line (just near my collarbone I had some tubes coming out of me, this was great because it meant I didn't need to get needles.   I also still had lines going into my wrist for them to take blood from (also fewer needles).  

Body function 2:
the wee bag

Body function1: the drain juice

After a while in the new bed they removed my three drains.  They were held in by a couple of stitches and I was a little bit more comfortable when they came out.  Dave had been in visiting in the morning and then he was back in the afternoon. Mum and Dad came in too.  But being in ICU meant I could only have two visitors at once, so they tagged teamed for a while.  Most of this day I just slept and listened to the happenings in the ICU.  The guy beside me was dying. It was sad.  


I ate dinner tonight.  But I think Dave ate more of it than me. 


I think I remember the physio coming by today too - you just have to do a bit of huffing that leads to painful coughing.  What I was bringing up was thick and green and gross.  I had a rolled up towel that I held against my wounds when I had to cough, move or breathe deeply.


Day 3: Today was the day.  They had found me a bed.   Someone on the ward had been well enough to go home or sick enough to die.  I was happy.  I also had a shower today.  They put me in a wheelchair and wheeled me to the bathroom but the nurse had to go back and get some morphine (to go in the central line) to help me cope with it.  After my shower I just managed toast, I wasn't going to risk the eggs again.  After another long wait I was transferred by wheelchair to the ward. I have to say that I was almost well enough to walk myself to the ward.  Once I was on the ward I was really enjoying being able to walk around.  I also found the ice machine and was a very happy camper.  I went ice crazy.  


Day 3 was marred by the offer of a suppository.  One of the downsides of morphine is that it sets your poo like cement.  I went to town with the prune juice, the fig paste - but no movement.  I held out for the suppository in the hope that my body would move things along naturally. 


I was also able to watch a little bit of TV today. Dave had brought along the new episode of breaking bad and we watched most of it. It was near impossible to watch it due to the fact that my eastern suburbs neighbour was listening to her wireless - at the volume she needed it one could assume that she was legally deaf.  Today I also got a visit from the gorgeous Lou and her Harry - they gave me the yummiest home made cookies that I munched on immediately.  Poor Harry I think I scared him a little with my pain wince.


Day 4: The doctors arrived on mass with notepads and professionalism, suggesting that I was well enough to go home.  Discharge was underway.  Well first I needed to have an x-ray to check that my lung was up and healthy.  With that completed I confessed to the headache that was concentrated on my left eye.  I went for a walk to try and ease the ache and returned to find my bed stripped and my belongings packed up!  But this headache was a stroke concern.  Since I couldn't wait on my bed I had to wait in the patient area until the headache subsided.  Comical, if I wasn't actually sick.

Eventually I was able to leave the hospital and go home.  On reflection I think that the care I received in the hospital was just excellent.  It makes me sad to think how the daily bed battle must waste so much time.  My brother visited someone in the same hospital who had advanced liver cancer and had had an aneurysm overnight - he was in a chair in the Emergency Department because they couldn't find him a bed!! Also I don't think the hospital was very clean.  The bathroom, shared between four of us, had poo on the seat for more than 12 hours.

Anyway, enough moaning about the public health system.  The operation went well and the surgeon was very happy.  The initial pathology suggests no tumour.  The neurologist seems happy too.  I don't really have a change in my symptoms, that should play out over the next year or so.  I am just on Mestinon for my symptoms and mostly they are mild.  The neurologist has also suggested that I can monitor and ammend my own medication, depending on my needs.


It has now been two weeks since my operation.  Each day I can do something new.  From sleeping sitting up (day 5), to lying down (day 6) to wearing a bra (day 9) to sleeping on my belly (day 10) to having a glass of wine (day 11).  I will start a job on day 21, I could probably work this week too. I only hope that my energy levels stack up.

Operation set for July 25

So it looks like I will be having my thymus removed on July 25.  I will be admitted to St Vincent's Public Hospital, be transferred to the private hospital for the operation (where the robot is) and then transferred back to the public hospital for the rest of my stay (which will be the better part of a week according to the surgeon and 3-5 days according to his assistant).


Essentially the operation involves having three small incisions around my breast (reminiscent of a boob job, something I can only confirm by rumour - can anyone confirm this is how it happens?).  I hope that they don't accidentally give me one of a set of comedy boobs while they are there.  Anyway back on point, the surgeon inserts the robotic instruments in through these incisions and deflates my lung so that he can get to the thymus which is kind of somewhere in my chest.   They cannot really tell exactly where the thymus is from the CT I had recently.  So next week I will be having an MRI to see if they can locate it a bit better - heres hoping that they do!!.  


A week before the operation (on July 19) I am going in for a pre-admission check.  This involves a heart check (from the CT I think the thymus is reasonably close to my heart!), a lung function test (let's hope this cold passes quickly and doesn't impair my lungs, or at least doesn't impair the one that will keep me breathing while they deflate the other one!!) and a chat with the anaesthetist (still a word that I cannot pronounce).  


On more positive news, assuming that the operation goes well I may start work on August 15.  I have been offered a 6 month contract working for NSW Health on a primary care project.  Woo hoo!  


Eating highlights

• Kalevu, 10 Princes Highway, Sylvania NSW 2224 (02) 9522 8300  (especially the waffle desert that had a very modern take on fairy floss!)
• Spice I Am, 90 Wentworth Ave, Surry Hills New South Wales 2010, (02) 9280 0928
  (not as spicy as I remember - but make sure you order the pork belly and the soft shell crab)
• La Rosa Bar and Pizza, 193 Pitt St, Shop 133 Level 2 The Strand Arcade, Sydney, 2000, (02) 9223 1674 (especially the croquette's with buffalo mozzarella) NB: it is at the other end but on the same floor to Pendolino for those who get lost

I am happy to report that there have been no eating lowlights. Below are some images from the last couple of weeks...

My very own beef rendang - given excellent rating by my David
(for some reason he sounded surprised!)

My fabulous de-constructed cocktail at Zeta Bar, Hilton.  It was eaten (my) left to right - first a mojito jelly on top of candied mint leaves (excellent), next a teeny tiny coke bottle shaped long island ice tea (disappointed) and finally the pina colada sorbet (amazingly fresh).  

An awesome seafood paella cooked by my lovely friend Renee.  The seafood was in abundance and the crab was super sweet. I got very messy!!

Itz naht a twoma...(maybe)

Flew back into Sydney on a lovely Turkish Airlines plane - nice large screens in the back of the seats, warm cherry juice served and then I don't think I saw an airline host/ess the rest of the flight - they were simply searly or absent.  

Mum and Dad dutifully picked us up at the ungodly hour of 6am.  They were a little late (rude!!) but it seems that Dad had fallen down the stairs in the dark and sliced his head open. Despite this setback he was only delayed a mere 5 minutes. Oh the miracle of parental love.  Anyway a shower, short nap and we were straight to the GP where I had to suffer the indignity of having to pay (after two years of free medical care in the UK).  Anyway this was a mere formality as I was swiftly referred to a neurologist I already had an appointment with the very next day.  I am still not sure how I got this appointment with the neurologist so quickly - it may have something to do with previously mentioned parental love. The neurologist confirmed the diagnosis and sent me for some additional scans due to the poor nature of the CT, a possible thymoma and the funny spots in my lungs.  He also mentioned that I would probably need to see a chest surgeon some time in the future. Oh yeah and in the meantime I was to return to his office the following week for some 'additional tests'.  It seems he was trying to rule out Lambert–Eaton myasthenic syndrome or LEMS.  Oh yes and here is where the worry begins.  What is LEMS, you ask?  A strong relationship to small cell lung cancer?  Small cell lung cancer - that highly malignant and widely metastatic kind of cancer? Yes and Dave had me writing out my will with an estimated 3-5 year life span.  I was (as per usual) in the camp where I didn't really have anything wrong with me. Tick, tock and one week later we were back to neurologists for those tests.  Oh yes, did I happen to mention that they involved an electric current applied to the wrist?  I kept telling myself that at least it wasn't a fine needle with current to the eye muscle.  But it was little consolation when the current was applied with 10 consecutive shots, many times over.  Finally that was over and he could confirm that I didn't have LEMS.  All good news. 

I returned a week or two later to be told that he couldn't be sure if I had a thymoma or not and the best way to find out would be to take it out.  I was still thinking that with the wait and all (due to my health insurance company deciding not to cover me for this condition - NIB, my friends - take your business elsewhere) for the operation that I might be able to pop to the US of A and back again before the doctor even noticed.  But the big bombshell was the news that I would probably not be able to travel for a year or two.  A year or two - he might as well have told me that I was going to prison.  

Off to the chest surgeon we marched.  I had a very short wait courtesy of a very good and well connected family friend.  The surgeon had the same message that the neurologist had.  Surgery was my best option - neither doctor could confirm if I had a thymoma or if the surgery would fix the symptoms, but it was my best bet.  And I am also lucky to live in Sydney where they do this kind of operation using a robot and going in via small holes - Melbourne is the only other place in Australia that do this.  The alternative operation would be splitting the chest open, now that sounds even more painful than the electric shocks...

So now I find myself grounded in Sydney and awaiting an operation date (I am told it will be less than months but more than weeks).  I am trying my best to get as many eating experiences in while I can.  Although Dave is now making me wake up at 7:30am to go for a walk so that we do NOT get fat.  Lucky I still have time for an afternoon nap.  

Eating highlights

• Yen for Viet, 296 Illawarra Rd, Marrickville, 02 9558 2819 (don't miss the caramelised fish in clay pot)
• Mylan, 193 Keira Street, Wollongong, 02 4228 1588 (don't miss the curry with sweet potato)
• Bloodwood, 416 king st. Newtown, 02 9557 7699 (don't miss the polenta chips.  Be wary of the service - it was the type I don't enjoy, where they don't trust you with your own wine bottle and seem intent on overserving you overpriced wine)

Eating lowlights

• The Cooks Table, 43 Gerrale St, Cronulla, 02 9523 9381 (although our dining companions were fab, the food and service were disappointing)

We are off to Kelavu tonight.  Perhaps this blog will morph into a Sydney food blog - a kind of non travelling amateur gastronaut.

The World's Shortest Travel Blog

So it seems that this could be the worlds shortest travel blog.  Unfortunately the Guinness Book of Records does not have a category for shortest travel blog ever, we may never know.

The calcium pools at Pammukale - sans Russians

About eight or so days ago I started to get a droopy eye (left, for those of you who are now asking).  It was just after we were at Pammukale and so I attributed it to a reaction to all the Russian bikini fashion crime that I had seen at the calcium pools (no photographic evidence for the protection of others).

Anyway HRH Princess Jemima diagnosed it as the need for a better prescription.  Dave thought it might be a tumour (but I think that was just so he could make reference to his favourite actor in his favourite film: http://www.youtube.com/watch?v=OaTO8_KNcuo).  I thought perhaps allergic reaction...so I upped my antihistamine.  But the dropping eye (or bung eye from hereon in) persisted.  It persisted through the ruins at Cannakale and again as we toured the sites of Gallipoli. HRH had to point out to several people that this was not a normal look for me.

Anyway eventually I was convinced that I should call my travel insurance. We hotfooted it back to Istanbul and sought the help from the German hospital in Istanbul (not sure why there is a German hospital in Istanbul, but I was grateful).  On arrival at the hospital we met Denise who was to follow me around translating when the helalth professional didn't speak english.  I was extremely grateful for her presence but the two interns she had with her that day were an addition I could do without.   The opthalmologists took a look at me and puffed air into my eye.  She was not convinced of the diagnosis and suggested I needed the help of a neurologist.  This made me cry, which prompted her to say through her translator that it was NOT a diagnosis and she didn't understand why I was crying.  Little did she know that I was lamenting the travel plans that I had the next day to Amman, Jordan.  Since seeing Indiana Jones (in 2010, I know a crime in itself) I had great plans for my trip to Jordan.   I knew the words 'neurologist' mean that I was not going anywhere.  I didn't really understand how true my prediction would come - for the next 10 hours I didn't go anywhere but the hospital.  From consulting room to reception to consulting room to CT (thorax), to MRI (eye and brain) and then finally I was released and I could make my way to get an EMG.  For those of you who don't know what an EMG is stay tuned.  We arrived at the 18:30 appointment to a packed waiting room - at least 10 people ahead of me and I had not eaten since 8 am that morning and I had taken a bus at 01:30 that morning to get to Istanbul.  I had no idea what kind of doctor I was going to see this time - but I realised he was a big news kind of doctor when I looked around the waiting room and noticed that not a single person was on their own and many people had more than one person with them, they also had the harbinger of negative medical news - the MRI scan!  I am not going to sound all ungrateful and say that I had to wait a while, this doctor had fitted me in at the last minute of a long day.  Little did I know how much he was going to enjoy perform this EMG.  Before he started he performed an ice test, which is what is says on the label.  Ice applied to the eyelid for a minute thirty.  If you want to know how long a minute thirty (eternity) is just put an ice cube on your eyelid. Anyway, onto the said EMG.  The EMG involves sticking a very fine needle electrode into my muscle and jabbing it about with increasing intensity.  So as he was jabbing this very fine needle around in my eye muscle he was also muttering 'perfect, perfect' under his breath.  I couldn't help but think he was enjoying this!  I was not.  He did the same test on my left arm.  After this test which I couldn't help but thinking seemed a bit quack-like (too much time with Skeptic Dave!) he was able to confirm the neurologists suspicion of myasthenia gravis.

Back for almost a thousand dollars worth of blood tests (boy was I glad that I took out medical insurance).  I wasn't due to pick up my medical tests until at least 3pm so we all went outside (Dave and HRH were along for the ride today) and I ate my breakfast that they had lovingly stolen for me from the buffet that morning.  As I was (practically) in the car park eating my breakfast there appeared the neurologist.  She must have some kind of tracking device on me.  She examined me in said car park and whisked me up to her consulting rooms and gave me a prescription for some medication and orders to return an hour after I had taken one.  We walked the Taksim square area checking bung eye every minute or so to see if there had been an improvement, we thought there had and trundled back to the hospital.  She was happy with the progress and ordered me to return at 4pm that day.  HRH had to depart at this point to get her flight to Australia.  And Dave and I visited Istanbul Modern - an excellent gallery.  Back at the hospital Uzm. Dr Melahat Değirmenci Eser delivered the deadly blow - we would have to return to my own country for some supervised treatment.  I thought having to go from the opthalmologist to the neurologist sucked, but this really sucked.  Oh well, I tried to stay positive.  I would get to have yum cha shortly.  Perhaps some tuna mornay too.  And I wouldn't have to eat a cold boiled egg with cucumber and olives for breakfast for a while.

A whole lot of waiting and tooing and froing and the travel insurance company agreed to send both Dave and I back to Australia.  We have coverage for resumption of travel (phew), but be warned resumption of travel means being dropped back into where you were taken ill.  Not so convenient if you were supposed to be in the US by the time you get better.  For a fee (of almost AUD3K) they could have made the flight return to London instead of Istanbul.  But I thought that was a little pricey since Kyaak tells me that is should cost (AUD340).

Anyway the key message to this post is that I am going back to Australia and will see you all soon (if you live there).  Fingers crossed that I get to take up their offer of resumption of travel.  I might just fancy a breakfast of cold boiled egg, cucumber and olives.  I have to say that the medical treatment that I received at Alman Hastanesi was excellent.  The neurologist and her assistant Özge were really lovely and the fact that Denise was always there to help me (and make the occasional joke) was excellent.

Istanbul, Turkey

FIRST POST EVER - IT CAN ONLY GET BETTER!

Itinerary so far

Istanbul x3 (overnight bus) – Goreme x3 (overnight bus) – Antayla – Demre (boat) x3 – Fethiye x3 (bus) – Pamukkale x1 (bus) – Selcuk x2 (bus)....stay tuned for Cannakale, Gallipoli and back to Istanbul

3 nights in Istanbul

Highlights: The Blue Mosque at night; the Istanbul local council shutting down the fanatics

Lowlights: 'Your the Voice' sung at full voice around midnight

So Dave and I started our journey waiting at Istanbul airport for HRH Princess Jemima* - despite being a HRH she had been bumped off her flight by damn Emirates. It seems the greedy bastards overbook flights at any chance. The royal tears could not disuade Emirates from bumping her. Finally she arrived, well at least her luggage arrived a little before her!

Anyway, a short metro and tram ride into town and there we were in the middle of what could only be described as ANZ – a team of Aussies and Kiwis (from here on know as the fanatics) were already chanting the chants of the most patriotic (the likes of John Farnham and Crowded House – I didn't hear Cold Chisel's Khe San but I am sure it was sung). We didn't let the ANZ fanatics spoilt our mood (much) nor did we let the worst hotel room get us down (never ever stay at New Backpackers hotel in Istanbul). Let me just pause a minute and say a few words about this hotel room – mattress on (dirty) floor, no water at times – let alone hot water and the ever joyful exposed wires in the room of no water.

We were straight out there on the streets. The Blue Mosque – I have to admit wondering about the name until I was inside and blown away. We have 3D images of the mosque inside and I would share them with you but I have to do so using a microsoft product and anyone who knows Dave knows that this probably won't happen! Across the Galata bridge, awesome fish sandwiches a-go-go. Topkapi palace along with all the Turkish weekend tourists (we queued for everything!). And then we were able to fulfil a lifelong dream and nightmare for two of my travelling companions at one venue – the Grand Bazaar. HRH had dreamt of bargaining at the Istanbul grand bazaar since she was a mini-princess and Dave had not even known the nightmare could be so bad. One hour in Dave withdrew (but not before he pretended to be her husband to get a better price on a cotton throw) and three hours in I had to withdraw too. HRH was suitably happy with her purchases though. We rewarded Dave with a visit to the spice bazaar – I was in nut and dried fruit heaven.

Istanbul food highlights

Fish sandwich joy!

Fasulye (spicy broad beans) at Tarihi Suleymani Yeli Kuru Fasulyeci (Prof Siddik Sami Onar Cadessi 11, Istanbul)

Pide and kepab at Karadeniz Aile Pide ve Kebap Salonu (Haci Tahsin Bey Sokak 1, Istanbul)

Stuffed apricots and sultan's paste from the spice bazaar

Fish sandwich (photo R) from the boats near the galata bridge

*names have been changed to protect the identity of some