Now, even more confused ... and in tears....

[Gennysmom]

I missed you all last night!!!  Gotta catch up!!!  Phyl...hang in there!!!!   Between now and 4/3 I declare that nothing you eat will have any calories in it!!!!!!!!!!!  All will be well!!!!!!!!!! 

Now I just wish I could wave the same magic wand for me!!!!  Although, right now, not much other than oatmeal and toast sounds good....so I'm being very good.   

[ppearl214]

how was the concert!?!?!? details! details!

Hanging in there... dad took me to lunch today.  Ate like a pig! *oink*. We spoke about the upcoming treatments.. the meds they are putting me on, etc etc. We spoke about my cheeky bloke's support of me throughout this whole situation... dad was impressed (did you hear that my SO!?!!  Dad was VERY impressed BUT, he doesn't have us married off yet!)

Symptoms are a bit worse but trying to focus on good things... like last time I saw my bloke, the blindfolds, handcuffs...er... um... *ahem*... nevermind!

Anyway, thanks hun for the wishes... the next week of waiting is going to be agonizing, I can tell. Just need to keep the energies up and the stresses down... and couldn't do this without ALL of you!

xoxoxoxooxoxoxox
Phyl

[Larry]

Blindfolds huh Phyl,

What else do you have in that chest at the end of the bed?

Have you asked whether its ok to play with toys during your treatment?

[Captain Deb]

Laz, I think the docs are encouraging her to play with toys during treatment as part of PT! 

Just got off the phone with Phyll--great to hear her voice....Glad to lend an ear (only ear!)Funny how a brush with deafness makes you a better listener!

Take care Pearly Girly!
Love,
Capt Deb

[ppearl214]

Thanks folks for looking out for me and loaning good and deaf ears to me this past weekend..... I really appreciate it.

Taking time now to prep for next week. Kate will be sleeping over the whole week so she can take me in for treatments next week, so busy cleaning, shopping, prepping for next week. getting my hair done Wed night and been working out at the gym a lot with my sadistic personal trainer to keep my energy levels up.   A lot of focus on cardio workouts as well as muscle strength in my arms and especially, my legs.  Will work out with my trainer again tomorrow night.  Trying to eat right as well.  I'm rocking and rolling but have to admit... the sleep patterns are not good.  Think a martini, pre-bedtime may help.

xoox
Phyl

[gregorywannabe]

Hi All

Just another bloke from OZ (Perth) here (G'day Larry). I feel a bit like a guilty eavesdropper after reading this thread! 

It's been great reading your experiences Phyl, and of the others here.

Quick bio. 44yrs, AN diagnosed 10 months ago 4-5mm. Next MRI in 2 months and we'll go from there.
First consult with ENT when shown the original MRI was wait (which I'm still doing). When I asked about
options he basically said "surgery", but then he's a surgeon!  I did ask about radiation and he said
"well you don't want to melt your brain"! 

At this stage I had never heard of AN (not true my wife, a nurse, had mentioned it given my symptoms) so I then
spent the next few weeks googling away. Some pretty scary stuff out there! A bit depressed and upset for a few
days as well. Even back then the radiation option appealed to me for some reason, even more so the more I looked into
both options. I then put the AN onto the back burner and didn't think about it much until I booked my
next appt + MRI today for 2 months time. Guess what more googling agin and here I am! 

I guess I want to be well prepared for this appt with all the right/hard questions to ask. Not sure how I'll go getting
a referral from the ENT to someone for radiation treatment, No worries I'll get one from my GP in needed. From what
I can gather the oncology unit here locally (Sir Charles Gairdner Hospital) are very good with the Sterotatic Radiation.

Anyhoo, just wanted to say thanks for the interesting read. I've also been catching up with your progress on other threads.
I'm guessing that you've finished your treatment now and that things are going OK?

Cheers

Greg

[ppearl214]

Hello Greg and welcome! *waves hello to all in the land of Oz!*

Thank you for your comments and the read, as well as your update.  After I started this thread, I then viewed it as a good opportunity to verbalize my journey through my decision making process and how it worked (or not) for me so maybe others could use it as a working tool in their decision making process. Whether or not I accomplished that has yet to be seen but it does give a glimpse into the frustrations, the running around, the questions, etc, that I have asked along the way.

Your surgeon's comments fall pretty much in line with most. My surgeon shocked the heck out of me by saying she didn't want to operate and to go the radiation process, especially for my age (ugh! 45!), the size/location of my AN (at time of decision, it was 9mm x 7mm, but grew steadily throughout the months, being a bit bigger at time of treatment).  I completed my treatment (Cyberknife, 5 doses) 2 weeks ago today. 

In the past 2 weeks, I have experienced typical symptoms/after affects, but each day, things are getting better.  I'm on the last taper step of Decadron (steroid to help with inflammation of brain/hearing nerve, etc), running into minimal affects now, back at work full time as of mid-this week.  I've booked my trip to France to be with my boyfriend and family (they all live in SE London or Shaftesbury/Dorset-England... yep, got me a cheeky bloke - he's also on this site!) and life is moving forward.  Seems more folks are concerned about me than me, but hey, I'll take it!

For me, I know I researched and made the best decision for me that I could. My hope is that what options are available to you where you are are viable, easily available and the docs will be understanding and compassionate to your concerns and queries. You are fortunate that your wife is a nurse and I'm sure, with her by your side, you will move forward with comfort and love as this journey continues for you.

But, most of all... welcoming you to this site and this terrific support network of the wenches, your fellow Aussies (yes, Laz, even you!) will help you get through this. I have done many posts here commending the ANAUSA (I even got a personal email from the director expressing thanks for kind words I have shared with them) and the folks here that have shown unconditional love and support during my pre- and post-AN journey. Know that we are here for you too!

Friday night your time now! Have an awesome weekend!

Cheers and Ta!
Phyl

[Larry]

G'day Greg,

Welcome to the club. Now, first things first, ya better not be a weagles or dockers fan??? coz then I will give ya misleading info! (lol)

Thats ok, I won't hold it against you too much. Anyway, there is a lot of good info on this site regarding the different treatments. I'm in Sydney and the only options are surgery or gamma knife. The jury is out whether cyberknife or gammaknife is better than the other - I guess a bit like beta and vhs videos in the early days. I had surger some time ago coz i was ignorant and did what the surgeon said and I am rather annoyed at that coz mine has grown back.

Anyway, as my regrowth is still small (I hope), I am not doing anything coz I am not getting any additional symptoms other than my nasty headaches which i have had since surgery. If the growth starts to get close or impinges onto my brain stem, then i will have gammaknife - NO MORE SURGERY FOR ME.

It is vital you go in armed with a number of questions about the treatments and also the post treatment issues such as the meds, their side effects etc. Actually, this is a common issue and I think maybe we should put a list together and have it stored as an icon on this site that can be added to. I will write to the moderator and see if thats possible. So rather than a thread, it will be a list by treatment type.

In the meantime Greg, do some searches on cyberknife and pick up a few ideas


Larry

[Kilroy1976]

Melt your brain, hehheh, that's rich. Maybe you should ask the surgeon which is worse, having your brain melted or having it stabbed with a spork. Neither one sounds too appealing, so it's a good thing that radiosurgery won't melt your brain and microsurgeons don't use sporks.

[ppearl214]

sorry.. melting and sporks are not part of my vocabulary, thankyouverymuch!

[Gennysmom]

OMG, Kilroy, I'm on the floor rolling!!!!!!!! They're gonna go get Bob the Brain Booger with a spork!  Oh!!!!!  The visualization!!!!!!!  I better not take any psychotropic drugs or I'm going to go to 7-11 and get a spork myself!!!!!  I can see it now, the headlines:

"Seattle area woman hospitalized for shoving spork in ear, due to new HIPPA regulations, we cannot report on her current condition"

[Battyp]

Do they have sporks at 7-11?  I know they do in all the local school cafeterias  wouldn't want the kiddies to hurt themsevles  HA!

[ppearl214]

sporks are now all the rage!  Got to get me one!


Question all.... headaches are coming on frequently now.. last taper stage of decacrap... you all experience this when you were post-treatment and going off the med?

[Kilroy1976]

Ptthh, headaches don't begin to describe my experience with coming off the decadrugs. Could be from the cyberknife too. You never can tell...

[Mark]

"I'm melting, I'm melting, look what you and your silly dog have done to me" said the wicked witch in the Wizard of OZ.

Now the great truth has been uncovered, it wasn't the water , she had radiosurgery!

Welcome to the board Greg and good for you to be researching your options and not taking as gospel the ramblings of the first surgeon you talked to. You can certainly do a lot a research before your next meeting but I don't think you'll be able to educate/ convince a physcian who makes that kind of statement. The man is clearly an idiot in my opinion.

I would seek out someone who does radiosurgery to better understand if that is a good option for you. I would send this clown back into the outback in search of Kangaroos carrying sporks 

Mark