Monday, August 17, 2009

A monkey & me







This weekend we celebrated our friend Kevin's 40th birthday at the Pumba Game Reserve. We all arrived at 12, went for a short game drive to the main lodge, had lunch and then settled into our chalets. It is absolutely beautiful and a real spoil. At 3:30 there was a game drive with sundowners and snacks before our black tie evening function at 8pm. I elected not to go on the game drive after my HORRIBLE experience with dune bashing in Dubai. I don't think driving in bushvelt for 3 hours is going to do anything for my head.

Anyway, I snuggled into my bed with a book while overlooking a magnificent view of mountains and game. The chalets are isolated and surrounded by glass windows - hardly any brick walls. I fell asleep and after a while heard this "Crash" I jumped up and found a monkey had run through the sliding doors, past my bed and into the bathroom. He was trying to get out but kept bashing his head against the windows that make up the flat. He threw my stuff around and defecated all over (nerves on his part) I locked him in the bathroom and tried to gather my thoughts. I opened the front door which was on the other side of the chalet and reasonably secure. I ran back and opened the bathroom door for him and ran out the front door. Eventually after crashing around the bedroom, he got out. Back inside I rushed to close the doors. The place smelled terrible. Luckily I just had to call reception and they came to clean up. I wondered around for an hour while then polished the room. SO, I had more "game" then those on a game drive!

The party was great and the guys got to see all the Big 5 game and a few others too. A wonderful weekend, the friends went a bit crazy not having kids around, they could party all night! Happy Birthday Kevin!

Thursday, August 13, 2009

Upgrade

I decided I needed a website upgrade to co-incide with my new lease on life!

Dr Butler Feedback

Well I had a conference call with Dr Butler (neurologist) today. What wonderful news - he said I am doing remarkably well. He is not worried about the tumour as such and is concentrating on my seizure management. He said that it seems to be low grade, as we thought, and growth has stopped. I just feel so happy with the confirmation I am getting from all sides.

I really need to detox. Last night I was feeling really depressed with how my body is looking. I need exercise and build up my muscle tone. Quite honestly, I don't know where to start. It is so frustrating. I will just have to make a plan. Having 3 kids with different schedules doesn't really help the cause...

Well, one thing at a time. I am just really grateful and blessed that the inside of my body is healing, its time for the outside now... d:)

Tuesday, August 11, 2009

Links...

We all know what a mine field it is looking on the internet. I have been building up a catalogue of links - If you have any links, please can you email me mailto:deirdre@kohlerprojects.co.za or leave a comment on my blog. These are the categories I am looking for (On anything to do with the brain)

General brain information
About brain tumours
Types of brain tumours
Symptoms
Diagnosis
Prognosis
Treatment
New treatments
Seizures
Videos
Images
Diet
Blogs
Surgery
Rehabilitation
Foundations / NGO
Other / Unusual / Interesting

Please let me know which catagory you want it in and I will have a look - (Don't want adult sites!) Give me as many as you can find...

A hair affair!

Hi all - I said to James that it is so strange not having chemo or even having it in the back of my mind. It is a huge relief. It literally feels like a weight has been lifted off my shoulders. It also makes me a bit scared (which I never expected) as I don't have that "defense wall" anymore. Even if I know that the chemo was also doing damage to my healthy organs.

About the ear - all fine, just a build up of fluid. Suched it out and voila! I could hear clearly. I tell you I have had to adjust my hearing again - it was SO loud!

You won't belive it but I have had 5 random people come up to me (in different places) and comment on how beautiful my hair is! What the hell do I say? The first person I just said "Thanks" the 2nd and 3rd asked how I got it that way and I told them it was a wig. Much to their surprise. Then we started a long conversation on brain tumours. The 4th & 5th I mearly said "It was done as a project in Johannesburg by Revlon" I didn't want to spend an hour talking about having a brain tumour! Not too far off the truth! The doctors have both told me to take the wig off now as my hair has grown back. BUT I am just waiting till the "booster" section has grown a bit more. It is actually so easy having a wig, it is going to be hard to go back to the "old" way! (Never though that would happen either)

Another suprise - the hair around the booster spot has come out BLOND! Plus it is real baby hair. So strange. So not only do I have different sizes, colors, curls and texture - I have a baby spot. Well I look at it as a new beginning around my tumour area - a fresh and "clean" start. Like I said - I will wait a bit till it grows out before loosing the wig. I don't want to look like some 80's hair style - burn my bra - chick (which I would NEVER do - I have had 3 kids!)

My advice to anyone going through this - get a wig, it helps with self confidence. Don't worry if people you know, know its a wig. The other was is that people you don't know, know you have cancer. My personal view was that it really isn't nice to feel branded wondering around and I would rather not do it!

Monday, August 3, 2009

Scan results

Well I am finished with chemo. I elected not to do the last round and didn't get too many hassles from my doc or my husband! I need to have my ear checked out...Its time to celebrate!!! I must admit, it was a bit of any anticlimax. I was expecting for feel great - but I just feel the same as yesterday! It was nice to know that I didn't have to swollow those HORRIBLE things! So this is me - one year later and fit and flourishing! To think I was actually on death's door this time last year! VERY bizarre.

I have alot on my plate and quite excited about getting back to normal. This month is going to be busy! This past week I worked quite a bit - I took a bit of strain. I have realised that I just can't work like I used to. I put so much into it in the first 2 days that it took two days of sleeping to let me recover. I had a headache with it so I didn't feel happy at all! That is not going to happen again I am afraid! From now on, afternoon naps are a must. I think that I am a little paranoid now, after going through all of this, that it could happen again... I will just keep praying that it wont.

Here are some pics from the scans. The area that used to be "the gap" where I had the surgery is now filled with dead tissue and liquid. You will see a faint black outline where this is happening. If you look at the grade 2 that's left, it is smaller than what there was in January. I am very much a layman, but this is what I can see. Leo looked at the pics and said to me "That is very beautiful Mommy" - interesting point of view! I need to send it to Dr Butler now for his opinion. Click on it too see it a bit larger...




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