Life with a Brain Tumor

Photo a day - February - Day 15

2012-02-15T00:00:00.000+11:00

Day 15 - Phone

Chose Violet's Barbie phone today...

Photo a day - February - Day 14

2012-02-14T00:00:00.000+11:00

Day 14 - Heart

This was given to me as a gift by a Mum at Emily's old school. It's handmade metal hearts made by her and she gave it to me a few days after my brain tumor diagnosis...

Photo a day - February - Day 13

2012-02-13T00:00:00.000+11:00

Day 13 - Blue

A simple piece of string off the hay bales that has been tied around the fence for years now...

Photo a day - February - Day 12

2012-02-12T00:00:00.000+11:00

Day 12 - Inside your closet

My closet has also been invaded with some of the girls things, including dance concert costumes of Em's and fairy outfits of Violet's...

Photo a day - February - Day 11

2012-02-11T00:00:00.000+11:00

Day 11 - Makes you happy

Alot of things make me happy.

But there is one thing that stands out that makes me happy and allows me to escape from life's busy routine and that is when I have my camera in my hands.

I would love an upgrade but this one will have to do for now until I can save enough monies for a new one...

Photo a day - February - Day 10

2012-02-10T00:00:00.000+11:00

Day 10 - Self Portrait

I know you will not be happy me editing yet another of my photos Alison, but I can't help myself...

Photo a day - February - Day 9

2012-02-09T00:00:00.000+11:00

Day 9 - Front door

This is the current front door of our house, we don't use our front door at all...

Photo a day - February - Day 8

2012-02-08T07:30:00.000+11:00

Day 8 - Sun

Have not seen much of the Sun for Summer here in Sydney, seems Summer will never arrive.

This was the sun rising from our backyard last weekend as I knew I had to take advantage of the sun while it was actually there...and seems it was a good idea as it's gone again already.

Not too bad for a mobile phone shot...

Photo a day - February - Day 7

2012-02-07T00:00:00.000+11:00

Day 7 - Button

Some cool craft buttons, but my favourite would be the teapot...

MRI

2012-02-06T21:53:00.002+11:00

This morning I had my MRI.

Funny even though I have had so many now in the nearly past 3 years since diagnosis, I still always get so anxious. Not about the confined space or the fact my face/head is covered in with a Hannibal Lecta type cage device but because I get that same sick feeling inside....that.something.might.be.still.there.or.has.grown.back.

Waiting in the waiting room is like waiting for my first MRI every time. I relive 'that' feeling without even knowingly doing so at the time. Thinking about not being around to see my girls grow up. Thinking about all the things the technician said to me when they asked me questions but didn't want to let on that they saw something, so on and so on.

I thought after nearly 3 years that I would be 'getting use to it' all, but just doesn't seem to be the case.

What makes things worse is that I have to now wait just a little over 2 weeks before I can exhale again.

Photo a day - February - Day 6

2012-02-06T00:00:00.000+11:00

Day 6 - Dinner

Not the best dinner for making great food photography, but I do love my home cooked curries, tonight it's Rogan Josh, sadly I forgot fresh coriander with this weeks shopping to top it off...

Photo a day - February - Day 5

2012-02-05T00:00:00.000+11:00

Day 5 - 10am

Photo of Em's new clock @ 10am from Typo...

Photo a day - February - Day 4

2012-02-04T00:00:00.000+11:00

Day 4 - A stranger

Since Friday afternoon we have had a stranger visiting on our farm...a peacock...

Photo a day - February - Day 3

2012-02-03T00:00:00.000+11:00

Day 3 - Hands

Here are my little Violet's gorgeous hands...

Photo a day - February - Day 2

2012-02-02T00:00:00.000+11:00

Day 2 - Words

Decided on using words from Emily's Buddhist prayer deck. You may not already be aware, but my eldest daughter Em is very interested in Buddhism...

Photo a day - February - Day 1

2012-02-01T00:00:00.000+11:00

Day 1 - Your view today

This is one of the many cool views from our verandah. This is our current cattle yards and today the cattle are in there for an even better view...

Photo a day - January - Day 31

2012-01-31T00:00:00.000+11:00

Day 31 - You, again

This marks the end of the January photo a day challenge...

Photo a day - January - Day 30

2012-01-30T00:00:00.000+11:00

Day 30 - Nature

All you are probably thinking by now is that we have alot of creepy crawlies at our place...well we do...we do live on a farm afterall...

Photo a day - January - Day 29

2012-01-29T00:00:00.000+11:00

Day 29 - Inside your fridge

Another subject I find a little too private for my liking. You will notice the essential supplies in our fridge; beer, wine and red bull...

Photo a day - January - Day 28

2012-01-28T00:00:00.000+11:00

Day 28 - Light

Bug zapper gets a workout at our place ...

Photo a day - January - Day 27

2012-01-27T00:00:00.000+11:00

Day 27 - Lunch

Sorry to report, I generally don't eat lunch either but here is a version of lunch I sometimes have...

Photo a day - January - Day 26

2012-01-26T00:00:00.000+11:00

Day 26 - Colour

This was so easy to choose as green is my favourite colour and we have plenty of that where we live...

Photo a day - January - Day 25

2012-01-25T00:00:00.000+11:00

Day 25 - Something you made

I can't say I have ever made anything myself besides helping make my 2 beautiful girls...

Photo a day - January - Day 24

2012-01-24T00:00:00.000+11:00

Day 24 - Guilty pleasure

Gin is my guilty pleasure and especially Gordon's! This is the only alcohol I don't have a hangover from (unless I mix other drinks aswell)

You might not be able to tell from this photo, but I buy it in a 1 litre bottle...

Photo a day - January - Day 23

2012-01-23T00:00:00.000+11:00

Day 23 - Something old

We have lots of old objects on the farm, but decided on these old tins which includes a couple of Golden Fleece tins...

Photo a day - January - Day 22

2012-01-22T06:30:00.000+11:00

Day 22 - Your shoes

Love these even more than my Esprit bag, yes I know I wear thongs but also get around with an Esprit bag, what can I say...I like to confuse people...

Photo a day - January - Day 21

2012-01-21T07:00:00.000+11:00

Day 21 - Reflection

Most afternoons we have an awesome reflection in the rear window of our van while it's parked in our shed...

Photo a day - January - Day 20

2012-01-20T08:00:00.000+11:00

Day 20 - Someone you love

This could have easily been another photo of my girls but I do love someone else as well as them, it's Dave.

Love spending a Sunday arvo with a few bevvies and listening to him play his didgeridoo...or banjo or guitar...pretty talented dude really...

Photo a day - January - Day 19

2012-01-19T07:30:00.000+11:00

Day 19 - Sweet

Couldn't live without sugar...

Photo a day - January - Day 18

2012-01-18T08:00:00.000+11:00

Day 18 - Something you bought

This is a canvas I bought for Dave for one of his recent Christmas presents as he is from England.

I also must admit I loved it as soon as I saw it in the store and thought that it would look great in our new house too...

Photo a day - January - Day 17

2012-01-17T11:00:00.000+11:00

Day 17 - Water

Thought I would take a photo of one of the many dams on the property we manage and live on, our house overlooks this dam and it's covered in water lillies but unfortunately they were not open at the time I took this photo. We are soon to move over to the other side of the property and will be overlooking a different dam...

Photo a day - January - Day 16

2012-01-16T10:06:00.000+11:00

Day 16 - Morning

Let me tell you...we are NOT morning people. I can get up and do what I need to in the morning if need be but I do not particularly like to converse and that goes for all of us.

Our mornings consist of Em watching ABC3 and Violet and I having warm Milo's and cuddles...

Photo a day - January - Day 15

2012-01-15T09:30:00.000+11:00

Day 15 - Happiness

My daughter Violet depicts happiness well I think.

So happy she is in my life, she is my sunshine...

Photo a day - January - Day 14

2012-01-14T02:30:00.000+11:00

Day 14 - Something your reading

This book came highly recommended from Dave (hubby) and a friend of mine in Adelaide. It is taking a while for me to get into it, but I will persist as I now want to know what all the fuss is about as Dave claims this is the best book he has read to date, which is a big call...

Photo a day - January - Day 13

2012-01-13T08:00:00.000+11:00

Day 13 - In your bag

Inside my much loved Esprit bag...

My diary, wallet, keys and phone.

I would be lost without my diary. Yes I do have a smartphone, but I still find a diary the best...

Photo a day - January - Day 12

2012-01-12T09:00:00.000+11:00

Day 12 - Close-up

Well, doesn't specify that this close-up has to be of me, so I am choosing something else.

Even though I dislike spiders immensely, I really think this spider is pretty damn good looking and interesting.

This spider lives above our roses.

The other visitor was also found in our yard...

Photo a day - January - Day 11

2012-01-11T09:00:00.000+11:00

Day 11 - Where you sleep

This subject is a little too personal for my liking...

Photo a day - January - Day 10

2012-01-10T08:53:00.000+11:00

Day 10 - Childhood

This cool teddy was given to me by my Mum when I was a teenager and it is the closest thing I can link to today's childhood theme.

Photo a day - January - Day 9

2012-01-09T09:45:00.000+11:00

Day 9 - Daily Routine

Who would have thought that this photo a day challenge would be so difficult to choose 1 photo for each set subject. For today's subject of daily routine I could have posted alot, photos of Violet's twice daily meds, AFO's, Physio etc.

Instead I chose a daily routine that has been making a positive impact for me personally...my kettlebell, it is my daily routine to use this and I am loving the results...

Photo a day - January - Day 8

2012-01-08T11:41:00.000+11:00

Day 8 - Your sky

Yesterday's sky would have been so much nicer...today the sky is miserable, grey and has even produced some rain...it may be my fault I put a few loads of washing on.

We have only had a few warm days here in Sydney since Summer started and feels like Summer is never going to arrive for real...

Photo a day - January - Day 7

2012-01-07T12:31:00.000+11:00

Day 7 - Favourite

This is hard for me to narrow down and I could put many photos here for my 'favourite'. So, I decided to put a few photos in one collage for this one...

I know some may think I am being materialistic but I cannot live without my hair straightener (yes, I know it's only a silver bullet and not a GHD) but I cannot leave the house without having my hair straightened!

My lappie is something I would be lost without...as I connect with so many people all over the world that have and still support me with my brain tumor journey. I also have had the same support from other special needs mum's for 6 years now. I would be lost without all of them.

Of course my top favourite with all the materialistic items behind are my two gorgeous girls who have helped shape the person I am today...

Photo a day challenge 2012

2012-01-06T21:26:00.000+11:00

I have been inspired by two fellow blogging friends Alison and Ally to take up the Photo a day challenge 2012 from Chantelle at Fat Mum Slim.

As I have been a little slow to start being 6 days into January, I will post my first 6 days in one post:

Day 1 - You

Can't stand photos of myself, I never seem to come out in photos as I appear "in real life"...here is my attempt for today...

Day 2 - Breakfast

I don't eat breakfast. From a very young age I remember not feeling like eating early in the day and I am still that way now. Here is my version of breakfast as an adult...coffee...

Day 3 - Something you adore

My Mona Lisa was purchased for $30 at an antique shop in Strathalbyn, South Australia where I am originally from. I have had many people ask it to be left to them when I die...

Day 4 - Letterbox

Needless to say our letterbox has seen better days, we are now missing a number too...not bad I guess considering it's homemade. We are soon to move and I doubt our new letterbox will have as much character...

Day 5 - Something you wore

This ring was given to me by my Nan. I find this ring particularly hard to wear at the moment as my Nan has had Alzheimer's for a few years now and she doesn't remember who I am anymore which is very upsetting for me. What makes this worse is that she is in a nursing home on the Gold Coast so makes it hard to just get in the car and go and visit her...

Day 6 - Makes you smile

This is very easy for me...it's my youngest daughter Violet...she makes me smile everyday...

Update

2011-11-24T21:26:00.001+11:00

Wow, it's nearly the end of 2011. Cannot believe how quickly this year has gone!

My studies are going really well so far and I have been competent in all units including receiving full marks for first aid. I have even landed myself a volunteering position at a special needs school here in Sydney with the offer of at least casual work at the end of it. This would suit me as I am still very busy with Violet's appointments and therapies and of course my own.

With the new year upon us, so too is my next MRI on 6th February and in turn my scaniexty. I am still having terrible migraines and have also added some stuttering to my conversations at times lately too. Not sure what that is all about but hoping it will go away soon.

Update

2011-08-04T04:21:00.005+10:00

It has been too long since I last updated my blog.

I have been having bad migraines constantly and have been using Sumatriptan (take 2 on onset of migraine) and it has been helping but normally I have migraines for 3-4 days in a row and these tablets only come in packs of 4 as it is a controlled medication needless to say with this amount of days having migraines, they don't last long.

I have also decided to finally do something for myself and hope I succeed in it. I am doing Certificate III in Education Support (Special Needs) I really want to help other families and give their child support in the education setting from my life experience already with Violet and also through this course I can fine tune what I already know.

Neurosurgeon Appointment

2011-05-12T20:58:00.000+10:00

Today, I had my follow-up Neurosurgical appointment from my MRI last week.

Scan was stable, which is great to hear. He asked me how my speech was going and I told him I do have issues with it at times. Word finding problems and also using an incorrect word instead. He said this was to be expected as the tumor was so close to my speech.

He would like me to go back to my Neurologist for a review of my headache management as they have worsened again and are now making me vomit.

The white area on my MRI above he feels is scar tissue.

He would like to now make my MRI's 9 month interval all being well in the meantime.

My next scan is February 2012.

2 years

2011-04-16T13:12:00.007+10:00

Can't believe it has been 2 years since my initial diagnosis of a brain tumor and very soon 2 years since having my cranioptomy and resection.

I have my next MRI in 2 ½ weeks on the 4th May. As usual before my scans...I again feel anxious...I have been having some awful migraines the past week.

ETA : They finally got the better of me this morning and I ended up vomiting :(

Hoping for positive MRI results.

Goodbye Topamax

2011-02-02T21:25:00.004+11:00

Well, I have weaned myself off the Topamax the past month...and unfortunately I have had some of the worst migraines since doing so...back to living on Sumatriptan and Nurofen Plus for now...seems Topamax was helping a tiny bit, but still not enough to warrant living on epilepsy meds for migraine management.

I will get to the Naturopath very soon and hopefully try that natural approach I was talking about in my last post.

Photo

Last post for 2010

2010-12-21T21:45:00.003+11:00

So far my recent increase in Topamax has done nothing to help with my break thru migraines, the last few days in particular have been horrendous! So seems this med isn't going to help enough either. I am supposed to be having my review with Neurologist in March but may see if I can get in a bit earlier to see if she sees any point in continuing with this med.

Maybe I should be trying something more natural? As I really don't want to keep playing with my body by weaning on and off all these different meds.

In 2011, I plan to start some meditation...no I am not turning into some kind of hippy...I have been told numerous times by other brain tumor patients since being diagnosed how great meditation is for brain tumor patients and figured I would finally start this.

Update

2010-12-06T19:21:00.004+11:00

Still going well with Topamax for my migraine management.

Initially, I weaned myself onto full tablet at night over a few weeks but I was still having the occasional break thru migraines.

So, last Friday I started taking another 1/2 tablet in the morning. I will see how this goes with helping control them with that added dose, as I don't want to make myself feel too zonked out either.

I have also decided to book my MRI in for 4th May as Violet has her leg/foot surgery in February and will be casted for 8 weeks, so that will take us through to April when I would be due for my next MRI and I figured it would be easier for both of us once her cast has been removed and I can relax a little bit more! She hates casting and this surgery for her is not going to be a fun time at all!

Follow-up with Neurosurgeon 12th May.

Neurosurgeon Appointment

2010-11-04T21:02:00.008+11:00

Today I had my Neurosurgical Appointment.

There is still high flair on my MRI which he would like to keep a close eye on. He said even though this area had increased in size from my October to April MRI's, this area has remained stable since my last MRI in April to this one in October. But as my tumor is slow growing and the fact that Glioma's are unpredictable and as he was unable to take extra tissue as my tumor was so close to my speech area he has to monitor this to see if it is in fact scar tissue only or residual tumor.

He would like to do another scan in 6 months instead of the normal 9 month gap that would normally happen from this point on.

He was very pleased to hear the Topamax has already had positive results, he did say to keep an eye on any cognitive changes as it can apparently drop your IQ. So far, so good but as I mentioned in the last post still on a small dose as only at the initial stages of weaning onto this med. That being said, today I have had pins and needles in both hands all day! I can put up with that though as the migraines are way worse than pins and needles!

I was right about the brain signals on the EEG being slower due to having my brain surgery, so that was good being able to clear that up.

Next MRI and Neurosurgeon Review in April.

EEG Results

2010-11-03T13:58:00.004+11:00

Finally I have my EEG results and thankfully NO seizures!!

There was some slowing on the EEG which I assume is from having the brain tumor and subsequently having a large chunk of brain removed, therefore sending slower brain signals from that area of the brain.

I will clear that up more with my surgeon at my appointment tomorrow.

As far as the Topamax, it has certainly started to improve the control of my migraines the only major side effect so far has been I am mega tired by around 1pm in the afternoon and I am not even on the full dose yet! So, I if I continue to get too tired I may have to look at another alternative as I can't really function if I am feeling like this already :(

Review with Neurologist again in March.

International Brain Tumor Awareness Week

2010-10-31T10:07:00.003+11:00

It's that time of year again...from today the 31st October to 6th November is International Brain Tumor Awareness Week.

The week is to create more awareness and in turn hopefully more funding and donations towards research into treating these awful things and hoping one day they will find a cure!

A time to reflect on those who have lost their fight with this awful disease this past year and also those continuing their battle with it.

MRI

2010-10-25T21:40:00.001+11:00

Late this afternoon I had my MRI. I will be picking up my films and report early next week for my Neurosurgeon appointment on 4th November.

EEG

2010-10-19T15:47:00.006+11:00

A sleep deprived EEG...what fun! Had to go to bed at 1am last night and wake up at 5am, only four hours sleep! Needless to say I am exhausted, I was when I woke up!

We were stuck in traffic on the way to the hospital and I arrived 20 minutes late...I did ring them as they normally re-schedule for another day if you are 20 minutes or over late to the appointment. Luckily, they didn't do that to me.

I did manage to fall asleep as I did for my last EEG....hooray....as that means that my sleep deprivation wasn't all in vain!

Unfortunately, it may be up to 2 weeks before I know how it all went. I may call my Neurologist in a few days time to see if she can chase up the results quicker.

I will sleep well tonight!

Image

NOgIN meetin

2010-10-06T09:11:00.007+11:00

Last night I attended another NOgIN meeting for Brain Tumor Patients at Westmead Private Hospital.

They covered Brain Tumor Recurrence. Guest Speaker was Neurosurgeon Dr Gordon Dandie.

He showed scan images of recurrence, pseudo-progression and radio-necrosis. He told us how important it was to differentiate between these 3 on scans.

90% of gliomas that recur, will be in the same position as original tumor. While 5% may have multiple tumors occur in different parts of the brain.

He wanted to stress the fact that whether your tumor is graded from 1-4 if your surgeon claims he got a total resection, he said that is impossible. No surgeon should ever suggest they have. With brain tumors there is no way you can have a total resection as their are so many millions of tiny tumor cells that are left behind.

I remember at my 2nd Neurosurgeon opinion appointment last year. He made it quite clear. He said it's like putting sand into jelly, you can never get all the sand out of the jelly, some will always be left behind. I thought that was a great way of explaining it.

My EEG was postponed the other day and is now scheduled for 19th October.

Update

2010-09-13T15:58:00.003+10:00

Tried the new med prescribed by my Neurologist for the onset of a migraine called Sumatriptan and I have to say it didn't do a damn thing for me!

So, once my Topmax starts to kick in, I hope it will be enough to help manage these migraines as nothing else seems to be able to manage them so far.

Neurologist Appointment

2010-09-03T18:04:00.018+10:00

This afternoon my appointment finally arrived with my new neurologist. She was really lovely and very informative.

She gave me a thorough Neurological examination.

After much discussion on my past tumor history, latest issues and once she saw how big my tumor was and it's location from my MRI scans she decided I defiantly need to have another EEG.

She feels my speech issues could be caused by a seizure of some kind...I am not so sure myself. I feel an EEG in some ways will probably be a waste of time, although I haven't had one since my diagnosis in March 09, so it will still be interesting to see if there are any changes.

I asked her about Topamax and the links to speech issues and she said that there can be some slurring of words but would be more likely to happen on a epilepsy dose not a migraine management dose. So, she recommends I starts that now and she has also given me another med called Sumatriptan to take as soon as I feel a migraine coming on.

When I asked her about the type of tumor I had, she said not much is known about them as they are so rare and they can unfortunately recur. Most of the literature they have on my kind of tumor is very limited and mainly on paediatric cases. Then add in the fact that mine was not the standard Grade I, it was Graded II. But I am still extemely thankful it wasn't a grade 3 or 4 by that stage.

Sleep deprived EEG booked for 27th September.

If EEG does show any epileptic activity she will review me asap, otherwise will review in December all being well.

Image

Is it just me?

2010-09-02T19:40:00.025+10:00

Or is there anyone else out there that seems to attract people who like to annoy them? Seems that I attract these kinds of people!

I am nearing breaking point with some peoples attitudes of late...and I mean so very close to snapping it's not funny!

I don't want to sound like I know everything in life but please do not insult me by telling me things I know so well from personal experience in an educating or condescending way!

After all I have been through and still go through with my youngest daughter Violet with the management of her complex medical conditions, treatments and ops + my own brain tumor journey, people seem to still think I want to hear all about their own problems....most of which are irrelevant in the grand scheme of things!

I know this may sound very selfish of me, but I really am over hearing how hard their lives are and how I have "no idea" what it's like. I mean come on!

I like to think after all I have been through I have some inkling of an idea of what a crap life is like! Be it medical diagnosis, tests, treatments, hospital stays, operations, an uncertain future...you name it...I think I have a pretty good idea.

I also have knowledge of knowing what it feels like to be kicked while your already down!

I mean do people even think before they speak? Oh hang on a minute of course they don't...that is proven in what I have written above!

If only they could walk a day in my daughters or my shoes for that matter!

Actually, it would be preferred if these kinds of people wouldn't speak to me at all!

Image

Update

2010-09-01T22:58:00.004+10:00

Follow-up appointment with the Gyno on Monday went well and I saw photos she had taken during my surgery to prove my clips are definitely on!

I ended up having to have the so called dissolvable stitch removed from my naval as the infection wouldn't clear up with the 2 courses of AB's. A few days after it was removed, it started to heal much better and is back to normal now. UTI has also cleared up!

Neurologist appointment is on Friday...

Update

2010-08-06T15:55:00.003+10:00

1 week post op from my tubal ligation and my naval incision is infected. G.P has put me on a course of AB's to hopefully kick it. On top of that seems I also have a UTI. So at least the AB's will help both issues.

I still haven't started Topamax. Main reason being that I would like to get over the issues above first and also a fellow brain tumor friend of mine in the U.S mentioned that as I have been having speech difficulties lately that Topamax may not be the best option as it can effect your speech too.

So I am going to wait until after I have seen my Neurologist on 3rd September before starting it as I would hate it to make my speech issues any worse.

NOgIN Meeting

2010-08-03T12:52:00.005+10:00

Last night I attended another NOgIN meeting for Brain Tumor Patients at Westmead Private Hospital.

They covered current research on the treatment of Brain Tumors and possible causes of Brain Tumors. Guest Speaker was Neurosurgeon Dr Brian Owler. Was again another interesting and informative night.

Tubal Ligation

2010-07-29T08:51:00.003+10:00

Well, yesterday I went in for my tubal ligation. Was a very long day and I am actually surprised how sore I am after. Not from the incisions so much though...

During the procedure they put a fine needle through your navel and your abdomen to fill with gas. This is to lift your stomach off your organs. Then the laparoscope is inserted into your pelvis to see your uterus, ovaries and tubes. A small incision is made at the top of the pubic region and umbilicus. They also did a dilation of the cervix and curettage of the uterus. This is to allow a sample to be taken and sent to pathology to check how the uterus is responding to my hormones and exclude any other uterine malfunction.

I am sore from my right shoulder and have tightness in my chest, a bit like it's hard to breath or that winded feeling. This is caused by the gas inserted into my abdomen, irritating nerves in the diaphragm.

I am on Nurofen Plus and some anti inflammatories aswell which helps with this.

I do feel alot better this morning than yesterday and last night. Had to sleep on the lounge last night propped up as I was in too much discomfort to lay in my bed. I am no whinger normally!

Although it is alot more painful and uncomfortable than I anticipated, it's nothing in comparison to last years brain surgery.

Have follow-up with Gyno 30th August.

So, once I have recovered I can start that Topamax for my headaches at long last! Can not wait to see if it helps, will keep you posted.

Update...

2010-07-21T15:52:00.004+10:00

Today, I decided to give my G.P and Neurosurgeon a call about my current speech issues.

They both said it definitely needs to be investigated and have referred me to a Neurologist, the earliest I can get an appointment is 3rd September, so I took it as that is pretty good going when it comes to specialists.

My Neurosurgeon is keen to bring my MRI scheduled for October closer. I have decided for now I will see how I go over the coming weeks to see if speech continues being weird or gets worse. As the MRI is only 3 months away anyway.

Confessions...

2010-07-19T19:38:00.009+10:00

I have been meaning to blog about this for a few weeks now. It is a little embarrassing to admit and it reminds me I don't seem to be quite the same since my surgery...

The past few weeks in particular I have been having alot of trouble with word selection. It's hard to know whether to laugh or be concerned. Whatever I want to say I end up saying the opposite to what I wanted to say or I say a completely random word that makes no sense to the sentence.

To give you an example...I was playing snap about 2 weeks ago with the girls and Dave and everytime I went to say "snap" it wouldn't come out and instead I kept saying "bitch". I did this for the whole game. Very bizarre and I just couldn't stop myself saying Bitch instead of Snap. I was not even aware I had said it until Dave and Emily starting laughing and pointed it out to me...needless to say we now call snap..."bitch snap".

As I mentioned before there have been many other times aswell where I say weird words/things instead of the word I am supposed to be saying in a sentence.

Emily has told me I am a crazy woman and she now wants to be my carer (gee thanks Emily!)

My memory has not been the best lately either and I have been forgetting alot of things I have said or already done. Luckily Dave and Emily are around to remind me, and even when they do I don't recall saying or doing alot of the things.

You may be wondering how I blog and remember what to type, well believe me, it takes alot of edits and spell checks to get it right these days.

I am hoping some of the other brain tumor patients out there will tell me this is all normal as my brain tumor was so very close to my speech area, but it has really peaked lately and has me worried...

Image

Birthday

2010-07-06T12:54:00.003+10:00

Today is my 33rd Birthday!

I woke to girls very eager to give me my presents. We then set off for breakfast. I had my fave...Eggs Benedict and the girls had pancakes.

We have more fun things planned for the rest of the day and we were planning on going out for dinner but Violet has requested pizza, so seems that is what we will be having.

Another year passes that I reflect upon the fact, I am thankful to be alive!

Image

1 year since surgery

2010-06-19T17:47:00.010+10:00

The 1st of June it was 1 year since my Craniotomy and Resection of my Tumor.

It's weird really in some ways it feels it was ages ago and other days it feels like it was only yesterday. I still have a couple of inches hair growth across the incision line and also half way back on top of my head has a tuft that sticks up where they shaved my head for the sticky dots for my stealth MRI on day of operation. Not a good look really! I am going to the hairdressers for the first time in 1 year next week and they will no doubt wonder who has been cutting my hair up until now with these tufts of hair all over the place!

My headaches have been very intense lately and I still haven't started my Topamax. I have a confession to make about this med and as to why I haven't started it as yet. It is kind of a personal reason but thought some people may wonder why I haven't started using it yet...It effects the contraceptive pill and I am patiently waiting for my tubal ligation on 28th July so I can start taking this med in an attempt it will help with my headaches.

Don't get me wrong I was booked in for the tubal ligation before I was prescribed this med, as after having Violet with all her medical conditions, we have been advised not to have anymore children. Then add into it the fact that I had quite a major health problem last year with this tumor, another child is something we both feel is not right for us. We will enjoy the 2 lovely girls we already have.

One of the headaches I had recently was so bad I couldn't lift my head off my pillow due to the pain and it was the most intense pain I have experienced so far and that's including pre-diagnosis time. I thought I was going to have to go the hospital to get checked out. I ended up deciding to see the night through without going and instead opted for much pain and writhing around in bed. Although it was still painful in the morning, it was not as bad as the previous night, thanks goodness.

Next MRI date is 25th October and Neurosurgeon appointment on 4th November.

Neurosurgeon Appointment

2010-04-23T18:41:00.012+10:00

Today I had my Neurosurgical Appointment. It has been a long week and a half waiting to hear how my MRI went.

There is high flair on my scan which has increased since last MRI in October. He is pretty sure this is scar tissue that was on my last scan and it has increased since then. So that is a relief!

He does worry me... as today he also added no further treatment at this stage. I already know that, as he told me I would need radiation if my tumor came back after my surgery last year but makes me a bit anxious when he mentions the "at this stage", I guess he is just covering himself again.

He is very eager for me to start the Topamax for my headaches. So really must start that!

Next MRI and Neurosurgical appointment is in October.

Here are a couple of my MRI images minus some brain...

MRI

2010-04-12T18:47:00.003+10:00

Only a very quick post to say I had my MRI today bright and early at 7am and have my follow up appointment with Neurosurgeon to discuss the results on the 23rd April...which is going to drag!

I will be picking films and report up later this week.

1 Year Ago Today...

2010-04-07T16:04:00.013+10:00

my world came crashing down, the day my Doctor rang me to tell me my diagnosis was a low grade astrocytoma brain tumor.

The immediate thought for me was not for myself but for my 2 children that may eventually have been without a mother.

You are suddenly made to question your own mortality and this is something no one should have to do at such a young age. But having to face this journey I think I have learnt to appreciate life so much more (even though having Violet I thought I did anyway) and realise things can happen to anyone no matter how full their plate is already.

You go through so many emotions and feelings...denial, anger, depression and start bargaining in an attempt to negotiate the reality of it all.

So many personal moments with yourself, your partner and your children that will never be forgotten.

Even 1 year on and my tumor and I have now parted ways, the feelings feel like it was only yesterday when I received that devastating news like a punch in the guts.

I am so very grateful that my tumor was operable and was a more favourable brain tumor than what they diagnosed me with initially.

I don’t think anyone diagnosed with something like this is likely to forget how they felt that day anytime soon.

NOgIN Meeting

2010-04-06T21:53:00.003+10:00

Tonight I attended my NOgIN meeting for Brain Tumor Patients at Westmead Private Hospital.

Tonight's topics covered were: Coping after a brain tumor and Radiotherapy for brain tumors.

Was again a very informative night.

Half way through the sessions they have a break for a light snack and drink and tonight I got chatting to a man who asked me straight away if I was a student there to learn about brain tumors, for which I replied no I am a brain tumor patient.

Pampering

2010-03-16T12:22:00.008+11:00

This morning didn't start as well as I had planned for going for my massage.

It started with me realising I had lost Violet's prosthetic eye which of course means if I don't find it, I will be paying $1200 for a new one. Sad to say I still haven't found it!

I then had to get the girls to school and preschool.

Half way to school I realised I had forgotten to give Violet her seizure meds and had to go back home.

I had to then go into Emily's school to try and find Violet's doll or bubby as she calls her, as she lost it yesterday and I thought the school was the last place she had it with her. She was crying for her most of last night :-( but thankfully one of the mums at the school found her and took it home knowing it was Violet's! If we had lost it permanently it would have been terrible, even though she has 4 other bubbies, she is super attached to this particular one.

I finally made it in time for my pampering at Moonlight View Retreat in Kurrajong. Let me tell you it was fantastic! I feel so refreshed and relaxed now! I still have a good balance of the voucher left so will use that in the coming weeks too.

Thanks again to the lovely girls from Essential Baby Cerebral Palsy Support Group!

First Update for 2010

2010-03-03T21:45:00.006+11:00

Well I know I have been very slack not updating my blog. But I really do have a good excuse as I have been quite busy with Violet and her gazillion appointments + it's so much harder than I thought to keep more than 1 blog going!

As I mentioned in my last post I have stopped the Amitriptyline as it just wasn't helping my headaches. I went back to my GP and he advised me that my Neurosurgeon had since sent him a report which said he would like me to try Topamax that is also used for headache management instead of Epilim at this stage. I am yet to start as I am a little anxious about medicating myself , and of course with meds come other side effects. I will start soon though as my headaches are the same...completely debilitating and I think I just need to bite the bullet and try it!

It is only 6 weeks until my next MRI. Neurosurgeon review on 29th April.

As I have posted before the lovely ladies I have met online through Essential Baby - Cerebral Palsy Support Group for my daughter Violet all rallied together to purchase me a $250 gift voucher at a Health Retreat when I was diagnosed last year...well...I have finally booked myself in on 16th March for some much needed pampering and will help me to relax before my upcoming MRI, thanks again ladies!

Update

2009-12-29T12:50:00.004+11:00

I decided to come off the Amitriptyline as it just wasn't helping my headaches. I am still getting them but larger intervals inbetween now, which has been much more bearable.

I will go and see my GP in the New Year to get referral for Neurologist, I would have liked to have had it organised before then end of the year, but things have been a little hectic, as this time of the year tends to be.

It's now been almost 7 months since my operation and dizziness and Nausea have pretty much subsided now, so that is great news!

I really hope 2010 is the start of good health and happiness for our family.

NOgIN Meeting

2009-12-02T14:03:00.004+11:00

Last night I attended another NOgIN meeting for Brain Tumor Patients at Westmead Private Hospital.

They covered Neuroanatomy and Grading of Brain Tumors. Guest Speaker was Neurosurgeon Dr Gordon Dandie. Was again another interesting and informative night.

I was even lucky enough to win the lucky door prize...a beautiful boxed flower arrangement, with the catch that I would need a photo taken with my prize to be featured in their next NOgIN Newsletter.

Update

2009-11-05T19:42:00.004+11:00

Have now been on the Amitriptyline med for 3 weeks and even though it has helped me sleep better, it is not helping my headaches.

Paracetamol doesn't do anything for the headaches, so decided to try Panadeine the other day and that didn't help to relieve the headaches either, won't even take the edge of them. So I guess I will have to try Panadeine Forte and go and see my GP again to discuss some other kind of long term headache relief. Can't be on Panadeine or Panadeine Forte forever, it's just not good for you!

Dizziness is still there but not as frequent. Hoping it will fully subside very soon.

International Brain Tumor Awareness Week

2009-11-01T15:52:00.006+11:00

From today the 1st November to 7th November is International Brain Tumor Awareness Week.

Brain tumors are so devastating to people who are diagnosed with them, as they attack the brain...the essence of a person, they can effect mobility, cognition, personality and speech to name just a few things and also often determine your life expectancy.

The week is to create more awareness and in turn hopefully more funding and donations towards research into treating these awful things and hoping one day they will find a cure!

MRI and Neurosurgeon Appointment

2009-10-15T18:18:00.002+11:00

Had my MRI on Tuesday and today I had my follow up appointment with Neurosurgeon to discuss the results.

All is fine with the scan with no evidence of tumor recurrence, which is great to hear!

Due to my headaches and trouble sleeping he has decided to prescribe a med to hopefully help with this. It's Amitriptyline which is also an anti-depressant but apparently it is also used for pain management and sleep issues, if this doesn't help he would be keen to start me on Epilim instead.

Dizziness and nausea I guess I will just have to keep putting up with and hope it subsides soon.

Next MRI and review with Neurosurgeon in April.

6 months since diagnosis and 1st NOgIN Meeting

2009-10-06T21:52:00.003+11:00

Today marks 6 months since being diagnosed.

Tonight I attended my first Nogin meeting for Brain Tumor Patients at Westmead Private Hospital from 7-9pm.

Tonight's subjects covered managing changes in cognition and quality of life and making choices.

It was so nice to meet other brain tumor patients in person.

I am looking forward to the next information session in December...

Faux Hawk?

2009-10-01T18:38:00.003+10:00

As my hair has been slowly growing back from my op, it is now at the point I look like I'm trying to sport a try-hard faux hawk!?

It's Just Benign!

2009-09-17T11:30:00.023+10:00

As the title suggests, since being told the news that my tumor was benign, it's weird how alot of people assume because it was benign life just carries on with no further monitoring, appointments and side effects from the tumor itself or the surgery.

I think that even though we are lucky our tumors were benign some people forget that benign brain tumors can kill and some may even recur. Even though recurrence is less likely than in malignant tumors, the worry still does not go away of "what if mine comes back?"

Even though many tumors can be the same in name, they can be so very different in behaviour depending on the grade of tumor.

Anything growing in the brain is not good. It is a confined space within the skull and it cannot expand to accommodate a growing tumor. Therefore as they grow even benign brain tumors have the potential to become life threatening due to pressure on the brain. Then there are some benign tumors that can not be removed due to there location and the deficits it would cause being removed.

Regardless of tumors being benign or malignant, patients will need lifelong monitoring.

During my research for support and knowledge of brain tumors, I came across a very applicably named website "It's Just Benign" - Connecting benign brain tumor survivors everywhere. So, there's obviously alot of other people that deal with this comment aswell.

GP Appointment

2009-09-14T13:39:00.006+10:00

Decided to call my Neuro on Thursday about my symptoms. He suggested to get some blood tests to make sure all was okay and rule out that side of things first. On Friday had my blood tests and received the results today and everything was fine.

So still not sure why I still feel like this, I am hoping with some time I will start to feel alot healthier.

GP was keen to get MRI earlier than 13th October, but I figured it's now only 4 weeks tomorrow until the scan anyway, so unless the symptoms get worse between now and then, I will leave it for that date.

Update...

2009-09-09T13:06:00.007+10:00

I am thoroughly enjoying being able to drive again. Just being able to get in the car and go to appointments and places in general is so good! Feeling a little more at ease about driving and this may sound weird, but it feels real again.

I have been going quite well in myself. I am still getting lots of headaches, nausea and dizziness. I was extremely dizzy yesterday, where at one stage I ended up having to hold onto the kitchen bench. I don't think I have been overdoing things to make me feel like this. So I am hoping it's just because that is how I was feeling pre-op and sadly post-op has just not fixed these symptoms.

If these symptoms get worse before my MRI in October I will go and see the G.P to check if all is okay.

On the road again

2009-08-30T09:18:00.003+10:00

From today I am allowed to drive again! I feel like a teenager getting my licence for the first time all over again!

Cognitively I am starting to improve. Now I am allowed to drive again I am hoping it will also bring back some normalcy to my life. Is it possible to ever feel “normal” again after having a brain tumor diagnosis?

It’s weird really, when you get diagnosed your whole world is ripped from underneath you…you then have surgery and feel quite awful during recovery and they tell you they will also be taking your driving independence!

Driving again today was all of the following: exciting, scary and overwhelming after not driving for 3 months. It felt very surreal...

SBS Documentary

2009-08-25T12:55:00.003+10:00

For those Australian readers of my blog, tonight 25th August on SBS @ 10pm is a great documentary called ‘The English Surgeon’. It's about Neurosurgeon Dr Henry Marsh.

SBS Link to The English Surgeon.

Cure For Life Foundation

2009-08-07T10:52:00.003+10:00

I remember watching this video when it was first televised just 1 year ago and thinking how powerful it was. Then 1 year later having a brain tumor myself, makes me want to share it with you all again. Such an important message that we continue the search for a cure for brain cancer as more and more people are diagnosed.

Cure For Life Foundation

4 weeks to go!

2009-08-04T16:23:00.004+10:00

With 2 months since my op, I have 4 weeks left today until I can drive again! I hope I remain seizure free in that time so I can get back on track with my life.

I sure appreciate life and driving alot more than I ever did. I also feel lucky I only have 4 weeks left of waiting to drive again, some brain tumor patients don't get the option of being able to drive again.

NOgIN

2009-07-27T19:59:00.004+10:00

NOGIN stands for the Neuro Oncology Information Network which is a Brain Tumor Support Group for Western Sydney patients who have been diagnosed with a brain tumor and today I received my first invitation to attend there information sessions.

They hold them every 2 months with different guest speakers and subjects covered.

I have already rsvp'd to Decembers session and I am quite looking forward to it. It will be nice to meet other brain tumor patients while I am there.

CT Scan & Neurosurgeon Appointment

2009-07-09T19:06:00.009+10:00

This afternoon went to have another post op CT scan. I then waited for the scans and report and took them to my Neuro appt.

He is very pleased with how I am recovering. He said the scan looked good. There was extra CSF fluid seen in the area where the tumor was removed and gliosis (scarring) which is to be expected. There was no abnormal enhancement seen after contrast.

He answered all of my questions about the Pathology Report, this sucker measured 6.5cm x 3.1 cm x 2.6 cm.

He can not of course guarantee that the tumor will not return.

I have MRI on 13th October and another follow-up Neurosurgeon appointment 15th October.

From then on I will have scans every 6 months for 1 year and then annually from then on all being well.

Birthday

2009-07-06T11:59:00.001+10:00

Today is my 32nd Birthday. I know birthdays always mean a lot to people, but since my diagnosis I think now each year will feel that extra bit special to me.

After having Violet and all her medical needs for the past 4 years I certainly have learnt what is important in life and what is not! But being given an uncertain future personally sure makes you re-evaluate life all over again.

Update

2009-07-01T11:36:00.015+10:00

It has now been 4 ½ weeks since my operation and I am starting to feel human again, which has been nice.

I still get headaches but only once per week. Have felt nauseas on/off for the past week aswell, which I am hoping is just normal post operatively or some kind of virus.

Memory is slowly improving but still not back to my normal self.

1 month down not being able to drive and 2 more months to go! As the first month I have spent recovering from the op, I am only now starting to go a little nuts from not being able to just jump in the car and go places.

I have spent the past weeks reflecting on my diagnosis and I do feel extremely lucky that my tumor was:

1. Benign
2. Operable

Being told I only had a certain amount of time to live at the initial diagnosis, I then spent 7 weeks waiting, worrying, organising things and trying hard to be positive in any way I could before my op, which was so very very hard!

I am so thankful I have a more favourable prognosis than what I was originally told.

I am writing down all my questions for next Thursdays Neurosurgeon's appointment. As this tumor is rare and I also received my pathology report in the mail the other day which had alot of conflicting pathology to what I thought it would and has now added more questions to the growing list for my Neuro.

Operation Day in Detail

2009-06-17T12:44:00.019+10:00

Thought I would blog about my operation day, as I have only posted photos so far.

We left the house at 5.45am and as Violet was still sleeping I decided I would leave her asleep as it would be easier in some respects to leave without upsetting her. This was one of the hardest things I have ever had to do. As most of you well know, I am Violet’s Carer and we have spent the past almost 4 years joined at the hip. So to leave without saying goodbye was awful!

Emily asked me the night before to wake her to say goodbye, which I did. She was a good girl and even waved me off at the window.

Dave and my Mum came with me to the hospital. I was initially keen to drive on the way there, as I knew after the operation that I cannot drive for 3 months! But I was a little anxious about everything and decided that Dave should drive instead.

Arrived at the hospital and went up to the admission clinic. I had been there less than 2 minutes and they were calling my name. Once I went through with the nurse, she gave me a basic health check and then I was given some very attractive compression stockings to wear. She then took me through to a change area to get into my gowns. Dave had to gown up aswell and we had a good chuckle getting ready in a cubicle together! We then got shown to a room where I was to wait for my MRI and op.

Dave then went and let my mum come and say goodbye to me. He then came back in and the Neurosurgical Registrar came in to shave areas on my head to put sticky dots on in preparation for my stealth MRI. He told me I would be having a titanium plate and screws to put my skull back together for the cranioplasty section of the op and that when I go through airports I will not be beeping, so that is a relief! Shortly after speaking with the Neurosurgical Registrar, I was taken down to have the MRI. Only took 10 mins, which was a nice change from my normal MRI’s.

We then returned to my room and got to have a quick chat to my Neurosurgeon. He said I was first on the list and that they were ready for me now. I said to “oh, I was hoping you could warm up on some else first!”

They then wheeled me down to the Anaesthesia area, where I had to say my goodbyes to Dave. It was hard ...but I was still smiling and joking. They then took me in to get ready for the GA and I was starting to get a little more nervous. As they poked and prodded me, I started to feel more and more anxious about the GA, more than the actual operation. They then told me I would me intubated and that they would take excellent care of me as I was going off to sleep in GA Land.

My operation was estimated at taking 4 hours, but ended up only taking 2.5 hours. I remember the Neurosurgeon at the end of the operation and coming out of the GA saying to me that he thinks he got it all and that it looked benign from the frozen section biopsy. I then remember going back to sleep and waking up in recovery feeling groggy, but not nauseas...the pre-meds had worked!!

I spent an 1.5 hours in recovery and was then taken to the high dependency ward. As I was being taken to the ward, I passed Dave and my Mum in the hallway. Unfortunately, they then had to wait another half an hour to see me.

I started feeling very tired, headachey and feeling alot sorer. I was given Morphine for pain relief and I was also given Dexamethasone to help with brain swelling for 1 week. As my postassium was low on my blood tests, they gave me something to help increase it (don't ask me what!?)

Day 1 post op, I was taken to have a CT Scan.

My head wound was bathed 3 times a day for 5 days.

After my 24 hours in the high dependency ward and having no major problems in that time I was transferred to the Neurological ward the following afternoon. I was initially put in a shared room for 1 night and then on day 3 post op I was asked if I would like a private room, which I gladly accepted after not getting much sleep from other peoples visitors that stayed way past visiting hours!

Even though my Neurosurgeon had told me he thinks it looked benign, I tried very hard to stay neutral in my thinking about it all until we got the official pathology report back.

My days in hospital also consisted of Neurological Obs, Physio, OT, blood thinning injections twice per day, medications and blood tests.

My Neurosurgeon came to see me every day except the Thursday as that is his clinic day, which I thought was very good of him! Dave and the girls came to visit me every day at lunchtime. Then my Mum, Dad and older bro Shane came to visit later in the afternoon.

On day 5 post op, late in the evening around 8pm, my Neurosurgeon came into see me to let me know that my tumor was benign and that is was a Ganglioglioma WHO Grade I-II. He said they can come back and normally benign, but some can come back malignant.

Gangliogliomas are a very rare brain tumor in adults and currently only account for 1.3% of adult brain tumors.

On Day 6 post op, I was allowed to be discharged. Dave and my bro Shane came to pick me up. I received all my medications on discharge but forgot to collect my staple remover from the nurses and they called me on the way out of the hospital. Dave went back up to get it and the nurse mentioned to Dave that my memory was not very good.

I have noticed this since being home that I have trouble remembering things and that I still feel very different. Still getting sharp shooting pains occasionally over the wound area. Hoping over time these areas will start to improve.

I have follow-up CT Scan on 9th July and that same evening have an appointment with my Neurosurgeon. Which will be interesting as I have alot of questions now I have had time to think.

Professor Chris O'Brien

2009-06-12T08:30:00.005+10:00

Many of my Australian readers would know Professor Chris O'Brien, a wonderful surgeon from a medical show here in Australia called RPA.

He sadly passed away last week while I was in hospital waiting to hear my own pathology results. He was fighting a glioblastoma multiforme brain tumor.

I have to say even though I have such respect for this man as a surgeon, his courage and determination to achieve and set goals even while being so ill with his brain tumor was admirable. He really did remain positive right until the end, which is so important and even though he was told he had 1-3% survival rate, he still said to himself, what's to say I am not in that 1-3%.

He made a mark on my life through RPA all those years back and then to hear he had been diagnosed with cancer himself, just seemed so unfair.

He has launched a new website for his new cancer centre here in Sydney at the RPA (Royal Prince Alfred) which is called Lifehouse at RPA. This is due to be completed in 2012.

Staples Out

2009-06-11T14:23:00.009+10:00

On Tuesday I had to go to my G.P to have my 32 staples removed from my incision. Thought it was quite bizarre Neuro chose to use 32 staples, as I will be 32 in July!

You wouldn't read about it...it didn't hurt at all! Well, maybe 1 of them...but that was it. I kept asking him have you started yet? and he had already half of them out!

I have had really bad headaches so have been living on panadol alot! I am hoping that will taper off and I will soon be able to cope. I am only having 1 sleep per day as I found I was having trouble sleeping at night if I slept any more than once per day.

Woke up last night thinking I had just a dribble patch on my pillow...eek! but then I realised I couldn't have possibly dribbled that much, I turned the light on to realise it was blood coming out of my wound! My pillow was ruined! So at 4.30am found myself showering all the blood out of my hair. As the blood looks quite dark, I am assuming that it is old blood from surgery, not fresh!?? I applied pressure to the area and it was soon controlled. If it continues too much I guess I will have to call the Neurosurgeon to see if he thinks it is okay.

Even though Violet has had 2 brain surgeries so far, I thought I knew all there was to know about how she felt after surgery etc but seems I didn't really have much of an idea at all. It's full on! I have a whole new outlook on life in general. I know for sure how much more extra, extra care I will be giving her on top of what I normally would for her future operations.

So, here are a couple of progress photos of my head now the staples are out:

Photos of my Op...

2009-06-07T12:35:00.013+10:00

...Getting ready for Stealth MRI before op

...just saying goodbye to Dave before my op...hair still straightened and all!

Looking a little bit different after my surgery...

...Op Day

...Day 1 Post Op

...Day 1 Post Op

...Day 2 Post Op

Home Today!

2009-06-06T14:47:00.007+10:00

Firstly, I would like to say how lovely it is to have the support of not only my family but the lovely friends I have! So thanks everyone!

I got Pathology back late last night and guess what...music to my ears! It's benign! I am yet to see the Pathology Report myself but the tumor is called an Ganglioglioma. These mostly can come back again as benign and sometimes malignant, so I guess we will deal with that if/when it happens.

I am being weaned off my meds and have to have my 32 staples removed on Tuesday.

I have lots of photos to post when I get a chance.

Oh that's right...this is real!

2009-05-28T18:49:00.015+10:00

Up until now this whole tumor diagnosis has felt so surreal...but today reality kicked in that this is serious and that Monday I am having my operation!

This afternoon, I had my pre-admission appointment, it took 3 hours...would have taken another 2 hours on top of that as I was waiting for the Neurosurgical Registrar but he had just gone in to theatre, so we came to the agreement that I will see him first thing Monday to sign my consent forms as sitting around for another 2 hours was just so unappealing.

I had appointments with a Nurse, Doctor, Neuro-Liason Nurse and Anesthetist.

They organised all the necessary tests before my op on Monday to make sure I am in good health. These were:

* Blood Pressure
* Urine
* Bloods
* ECG
* Chest X-ray
* Lung Function Test

They were thoroughly organised which was nice to see, made me feel I was in good hands at Westmead Hospital.

I have to be at the hospital on Monday at 6.30. I will then be taken for an MRI at 7am to map my brain for surgery. I am 1st on the list at this stage. Start op at 9am, into Recovery around 1pm and into High Dependency Ward around 3pm. The operation will take 4 hours. They told me I would have quite bad bruising on left side of my face post op, and to warn the girls so they know beforehand.

The names of the procedures I am having are:

* Craniotomy
* Resection of Tumor
* Cranioplasty

After the op I will be given Mannitol and Dexamethasone to reduce swelling of my brain.

I will be receiving Physio and OT post op.

They said to definitely expect to be in hospital for 7 days.

1 week until my op...

2009-05-25T11:01:00.003+10:00

Well, had a great time with my friend from Adelaide and it sure did help distract me from thinking too much.

This week I am still busy finalising things for Violet and ourselves in general. Also, enjoying my last week of driving a car before I have a 3 month no driving ban post surgery :-( I will find that very hard!

I have my pre-op appointment on Thursday, where I will have blood tests, health check and get to speak to Anesthetist and Neurosurgical Registrar. I have another list of questions...as I always do!

Still remaining reasonably + at this stage. I guess the nerves may kick in the night before the surgery.

2 weeks until my op...

2009-05-18T07:25:00.006+10:00

Well, I have been coping reasonably well while waiting for my operation...

I try very hard not to dwell on everything. I don’t want to think about it everyday, but naturally I do. It’s mainly at night I struggle the most. I am trying to keep busy and organise all of Violet’s appointments before the day aswell.

My best friend from Adelaide is flying up to visit today for 4 days, so that will be nice as I haven’t seen her for 2 years! It will also be a nice distraction and no doubt a good laugh while she is here. She has been great since I have been diagnosed, calling me most days, and always tries to talk about everyday things aswell which has been fantastic as it is another way to take my mind off my situation for a bit.

Since I was diagnosed with this tumor, I have obviously done way to much research on the net but during that time I have had the pleasure of meeting another young women in the U.S… Carina who has Anaplastic Astrocytoma. She has 2 blogs, one called My Journey with Anaplastic Astrocytoma and another called That’s What She Said. Both detail her journey with her brain tumor and her treatment and she is an inspiration!

In a previous post, I have also mentioned a friend of mine in Adelaide…Todd who is living with an in-operable brain tumor and he gave me a great quote the other day “you never know how strong you are, until being strong is the only choice you have”.

fMRI

2009-05-16T16:50:00.012+10:00

As Neuro #3 had suggested he would like me to have fMRI (functional MRI) to see how close my speech was to the tumor, I have since contacted my chosen Neuro Dr Dexter to ask if he thought it would benefit me to have one. His secretary rang me last week to say he thought in my case, it would not be beneficial for me to have a fMRI.

All along Dr Dexter has said he would be disappointed if my speech is affected from this op as it is close to my speech, but not too close!

Which I was relieved to hear as I do not want to have awake surgery. I would feel more at ease getting the tumor out regardless of how close it is to my speech. I would much rather live a longer life than worry whether my speech is intact.

And the winning tender is....

2009-05-08T19:47:00.004+10:00

I know the title of this post may seem a little odd, but it's exactly what it has felt like the past few weeks seeking Neurosurgical opinions. It's seriously like asking them to put a tender in on your life. Not only with the costs, but the service delivered.

Well, with some serious thought the past few weeks about all 3 of my Neurosurgical opinion appointments...what a mouthful! As yet I have not mentioned any of the Neuro's names, however I have decided I will now tell you one of them, as I have officially chosen to go with...

As you all know from the last Neuro, I was told he would like me to have a functional MRI. So, I have left a message with Dr Dexter's Secretary as he is away until Monday to see if he feels this would be beneficial for me.