Home for Melbourne cup

Home, what is it? A place,a person or perhaps a smell. The crazy bird kammakzing our bedroom window, the unholy mess on the dining room table, two crazy whippets, the shaded deck. It all adds up to something special. We have just returnd from our 4 k walk around the cycle paths and I am in love with this part of the world. Michael wants to go travelling, but I just want to stay and savour Ashgrove in the spring.

day 4 post op and discharge

Well that is the good news and I couldnt be happier, but a very special thank you to all the wnderful staff at st Andrews. What is it about nurses? They seem to be born cheerful and caring in the extreme. No wonder they top the list of the most trusted professions. Now I have not untill this point understood that, being as i am of the doctor variety, but I do now so from the bottom of my heart, a very big thank you.
I guess by the time ou are sitting around waiting for the next meal, it is certainly time to go home. I have managed to gain a kilo with all the sitting around and frequent meals, bit like airlines (probably not QANTAS), but I have been give permission to walk, as much as I like just avoiding lifts over my head and cycling is not on till at least next Friday. so the cycle path is clear dor the next 5 days. then watch out,
Love to you all
Carmel

day 3 post op , home stretch

Hi all,
woke to another beautuful day and from my point of view each day is wonderful
Today - another significant milestone - I get to change the dressings on my head, WOW WOW. please understand that ny head feels like there are an army of ants moving across the shaved scalp so all I want to do is scratch like crazy, Poor darling Michael is fearful that I will bust the head wound. Not a chance - it is wrapped so tight that there is no getting to it ( untill today)
Yesterday, I got my drip out. WOW WOW and yesterday as well, I got my device. YEAH YEAH This currently is programmed to simple settings only ie only Peter Silburn and his team can dial it up and turn me on. Visions of the Manchurian candidate, are not inappropriate. I can imagine Michael with the device wanting to " turn me on" - OK OK iget it, not appropriate for a family blog, but somewhat hiliarious anyway. on - i'm free and normal, off - I'm frozen like a stone, on - I can sing and dance , off -I just sit there expressionless. On- I can play music (OK now I am getting carried away)
It really is one of lifes little miracles and I am so glad to be born in an age where this is possible
One of my silent concerns pre-op was that now there would be no excuses. I would have to participate and to a lifelong introvert, this was a concern, No promises now, but I suspect that I will want to join in , grasping life with both hands, kicking and screaming as I ride rhe roller coaster.
Love to you all
Carmel

The ugly reality

This is me deeply into DBS Courtesy of James from medtronics

last deal on 2 for 1 now over

Hi all,
Neale/David and Robyn have just been to visit ON THEIR WAY HOME!!!!!
Can I just say how jealous I am, but the main purpose of this post is to now tell you all that the special Cardiac/neurosurgical offer of " 2 for 1" is now closed.
If you come now, you get the special of Carmel accepting a cup of hot coffee in her L hand without even thinking about it! no shakes, no tremors, oo anything!
Apparently accordning to Robyn I look like I did 5 years ago. I do find this a little strange as I was not doing any buddhist monk interpretation then as I recall. But I am a bit miffed that dbs has done what years of expensive moisturiser has failed to achieve
All fun aside, I think people around me notice the difference more then I do.
but I must say I do feel freer, looser,,happier than I have felt in ages, looking forward to getting back on my bike, preferably without falling off.
And I have to say a big thank you to you all but especially Michael, who has struggled through this with me. Darling - I really do appreciate all you have done for me.
Love to you all
Carmel

the morning after

I'm awake and alive and have a lot to be grateful for -but ( and there is always a but isnt there) I think I would like to be a time travellor. Then I could travel forward in time to a different place. A place where my head didnt feel like it was going to drop off because it was too heavy for my shoulders and my chest didnt feel like it was trying to hide an ever expanding balloon… OK now I have got the grump out of the way, time to face the day
Michael came in again last night with scrabble and though I tried to concentrate, my heart and competitive spirit were just not in it. I'm starting to realise the insidious effects of endone. Pain relief is all well and good, but it saps energy from you and makes you nauseated. so on the whole I think I'm better to stick with good old panadol.
Peter Silburn has just been in reassurung me that all is going well. he has just "turned me up". the voltage that is. spparently,if you turn it up too soon, all hell reaks loose in your head and you start getting strange dyskinesias etc. Dont want to go there so I'll live with the slow and steady approach. He is very reassuring.

Upgraded

For the first time in my life , when it really mattered, I scored an up-grade. The deluxe suite at the hilton, has nothing on ICU ( first class) St Andrews.
I was placed in a room alone to enjoy the opium dream. The noise of other patients was irrelevant.
I feel much more alert this morning after realising that I could say no to the offer of more endone (oxycodone narcotic) .Michael unfortunately got the very sleepy narcotic doped wife last night . He tells me today that it was OK.
The nurses are uniformly wonderful and encapsulate the reality of the caring profession.
I really dont know what people complain about with hospital food. I find it fine.
Maybe my taste buds have been affected as well as other neurones
I trip upstairs today to a room with a view, not Venice, just 5D,
Love to you all Carmel

Believe it or not, this blog was typed by Carmel herself today at an admirable speed (I typed yesterday's blog in case you didn't pick it). She really is looking so much better today and is already finding smiling more automatic, rather than aconnscious action - like coming out from behind the stone wall. She can tap her fingers faster as well - a favourite neurological test for Parkinson's. So things are looking up! Love Michael

News from Intensive Care

Contrary to popular opinion there are some parts of ICU that are quiet apart from the perpetual pumping of the calf contracting contraption moving any dawdling blood cells along. I am getting some rest here with Michael by my side helping me blog my way through. i've now had my second CT scan for the day (they are becoming a habit) and the results were fine. I hope to break out of here tomorow. I want to start pacing the ward again and try out my new starter motor. I'm very grateful for all your well wishes and positive thoughts. they seem to be working!

Carmel looking starkly positive

revving up for the big day

What a difference a day makes.
First up was a trip downstairs to the MRI scanner. Despite my insistence that I could still walk, staff insisted on ferrying me in a wheelchair. Perhaps it is quicker, but I dont like feeling like an invalid! Time enougwh for that later.
I came down minus glasses so found the consent forms challenging. Mostly they need to exclude presence of metal in your body as the magnetic force is so strong it can attract metal to it and any tissue in the way just gets destroyed.
The secret I believe to surviving the claustrophobia induced by MRI scanner is to keep your eyes closed.
This has always worked for me in the past and did today untill I realised that I had forgotten to mention my dental implant. Images of implant crashing through jaw and flying to magnet had me pressing the panic button. Staff quickly reassured me by saying that they couldn't take it out anyway. What does that mean? Its tough luck and your now stuck.! If we could have taken it out we would have?
Anyway we (me and implant) survived.

On return to my room, I had a visit from the lovely anaesthestist. Dr FS.
Comforting as well as informative. Explained that I will be sedated for initial imaging (CT) tomorrow whiel under my head will be stabilised (what an innocous word). Basically my skull will be screwed into a frame to keep it absolutely rigid. I for one am delighted that I will be "under" for that part. Then I am taken to theatre, woken up for the localisation procedure, and then put back under for the chest implant bit.

I also had a visit from Kellie (programming nurse) from Prof Silburns rooms. She did some baseline functional assessment and went into more detail of the joys of living with a neurostimulator or "pacemaker" to airport security guys. Particularly risks of going through airport screening while overseas and having the device turned off accidently and only being able to reset to "factory" default. Moral of the stry -if travelling always take some of your old meds.
Kim (physio) took some before video shot of my walking etc
James from Medtronic explained the device and warned that induction cooking may not be compatible with functioning neurostimulator. That will be an interesting discussion with Michaek!!!
Finally the neurosurgeon Dr TC visited at 6.30 pm and went into great statistical detail of the risks. Im not going to repeat all that as I am focussing on a positive outcome
In between all this activity visits from my darling Michael, Mum and Dad, Robyn and a visit from her husband Neale the cardiac patient downstairs. Who by the way looks remarkably well and I should imagine is starting to itch to go home
Now I need to await the ritual shearing and mega dose of sleey tablet that will hopefully give me a better night
Love to you all
Carmel
PS Michael will take over tomorrow

day 1 at st andrews boring in the extreme.

I'd love to report some blood and guts story, but basically I have occupied a bed all day and not had any assessment. Makes me wonder why I had to come intoday. However MRI tomorrow and I fast from midnight. Perhaps they knew my appetite for food and didn't trust me to stay away from the fridge all night. I am now in rm 25 in the orthopaedic ward (5D) and I can only presume that the neurosurgery patients bunk down with the bone patients because our skulls get drilled. Love to you all Carmel

michaels test

Wishing you all the best

testing time for Michael

Is the technology going to be master or slave?

preparation

test run Carmel