Friday, November 28, 2008

Christmas

Leo had the cutest little concert today... Most of them had stage fright. Leo relaxed on the chair and got up at his leisure. Generally half way through the song. Every mother thought their child was the best. They obviously didn't spend time looking at him...

Have a great weekend... I can't wait!
d:)

How to sleep in...

You know, you have to use some things to your advantage when you have a brain tumour! When James & I first got married, I took the kids to school and brought him a cup of coffee. He enjoyed this while happily snoring.

Now days he makes me tea in the morning and takes the kids to school. ANYWAY one of our friends says that is what happens in marriage, I said no, its because I have a brain tumour. He didn't have much to say about that.

PS Of course I don't snore. Woman don't snore they mearly breathe deeply.

Life Logger...

I have no idea what happened to my previous blog company. The blog was brilliant and they actually gave feedback when you emailed them. I have heard via the internet grapevine that their holding company was shut down immediately after they ran into huge losses.

Sad really... Surely they could have given us a bit of notice? At least given us time to back up?

d:)

Wednesday, November 26, 2008

The plan - return

I seem to have confused alot of people with what is going on!
  • Well I am going to Egypt and Dubai on the 8th Dec - 23 Dec
  • I did loose my passport and we have now got temporary passports
  • All trip stuff has been sorted out (visas etc)
  • I start radiation and half chemo on the 29th of Dec - 9th Feb
  • Full chemo from the 9th Feb - 9th August
  • No Gamma Knife - my tumour is too large and diffuse

Don't worry I was just as confused most of the time!! At least I know where I stand now...

Birthday Pic

My husband is also challenged when it comes to taking photos - this is as good as it gets!


Birthday Spoil

Well I must say that I was very spoilt yesterday. Between my Mom and James, they organised an unexpected get-together at our house with family and friends. I had lovely pressies. I feel great today.

They weren't going to let me sulk!! It was nice to be forced to celebrate.

Thanks to all of you for your emails, sms', calls and gifts.
d:)

Tuesday, November 25, 2008

Vertigo

I have been having a mild bit of vertigo lately and it has worried me so much. I wondered if the tumour had dropped to my ear or something!!

Well anyway, I am also following a blog of a guy (Mark) with the same type of brain tumour as I have (http://www.markmillermusic.org/blog/) He is about 2 years ahead in treatment but has a much smaller tumour. He was writing that he started having bad vertigo and was worried that his brain was on the move again! (Same worry)

But as it turns out, it is caused by toxic levels of the anti-seizure medication (epitec) I am going to have to see my doc. I am supposed to have my toxicity checked regularly- another thing I didn't know!!

Well last night, I was very grumpy and then burst into tears. I am so tired of going through this. I went into the basement and spent time painting. I can't tell you how much it helps! Must be why my paintings look aggressive!!

Melancholy

For some bizarre reason I actually usually feel quite blue on my birthdays. I suppose it is a time of reflection over the past year. Every year I set goals with what I want out of certain areas of my life. It is good to see the successes and reflect on the "misses"

I must admit, it is hard to set the normal goals because I am not sure what the treatment will involve. But the normal ones, travel etc, should not be affected.

Well a year older, it feels like just yesterday I was 32!

Monday, November 24, 2008

Well back to the old way

Well it seems that Gamma is not going to work for me. My tumour is too large and diffuse. Not that I know the size from the last scan, but I assume it is about 4cm? We are so disappointed. I am really not keen on radiation. James isn't either. But it seems like it is unavoidable. I will be starting on the 29th Dec.

Boo Hoo

Well I turn 33 tomorrow... I feel young and old (if that makes any sense) I am not going to do anything, going to Egypt is good enough! I have had more than enough attention this year!

Happy Birthday Bar!
d:)

Friday, November 21, 2008

Prayer

I would just like to thank everyone who has / continues to pray for me. I believe in prayer. I have alot of chats, moans, thanks, pleads and adoration for God. I probably chat more to him than I do to James (he doesn't start snoring in the middle of the conversation / monologue)

It is fulfilling a spiritual need for 'friendship' I have seen many miracles and answers to prayers through this time. I don't get angry with Him, I am very impatient and wish He would sort this out! I have explained to Him that I feel I have enough 'character' and need to live in peace! I think He appreciates my sense of humour!

There are some things that cannot be explained by science. However you do it, there is power in prayer. We have been given life and created in the image of God. He has given us the power and strength to face all things through Him as our source.

This is not a preach, but as usual, I am writing what I am feeling and what works for me.

Do you know that it is much easier for me to write this into the cyber world than speak face to face. It gives me time to think and makes my thoughts clearer.

Thank you Bar for that verse you sent me (it is in the last comment)

Thursday, November 20, 2008

Anxious

I am really anxious today about my tumour. It is so strange, I haven't felt like this before. I suppose that they telling me to have chemo and radiation is scary. If I can't have the gamma (which is a strong possibility) I will have to start radiation and chemo. It scares me. It has serious side effects. I asked the doctor about what I can expect and he said you may be "slow" SERIOUS?? Thats just great to hear. It is not just the tumour I have to deal with, but also the side effects. I am tired of hearing all the stats. Although I really want to know what to expect, they are depressing.

I need to try all avenues. Time is always a problem. Nothing is simple. Some days I just feel like ignoring it. I really can't have it consuming my life. I am looking forward to my holiday. I want to gain strength. But I can't pretend it won't be at the back of the "mind"!

Wednesday, November 19, 2008

Conventional Radiation?

I may have to face the fact that I might go for conventional radiation. The doctors in Egypt say that my tumour is too diffuse. I haven't heard from the USA yet, but my hopes are dashing a bit. I am really not looking forward to chemo and radiation so I am just clinging onto a trickle of hope that I don't have to. I understand that life is more important etc. I suppose it is like deciding to bungy jump - Um No

Feeling 'sick' is a really terrible feeling. I don't mean physically, like I said my symptoms are so mild. It's the emotions and self confidence that gets knocked.

My Grandfather always says that "getting old is not for sissies!" How true is that? Ok I know I don't have the whole wrinkle, sore hips & grey hair thing (well nothing I'd point out) But like I mentioned before, you realise that you have to get tougher as you get older! How ironic is that?

Talking about grey hair, I have spotted a couple. HORROR! So much for not dying my hair. Whatever. Women "never" go grey. Thank you L'Oreal! - No this is not advertising, I just couldn't think of another name. Obviously all those TV stars swinging their hair around saying "I love my hair" nonsense pays off!

Monday, November 17, 2008

Brain Hole 3?



If you have a look in this image, you will see my brain (burr) holes. They are the big black circles. I don't know if my eyes are getting the better of me but it looks like there is another one on the top.

Anyway, the office is going for Paint Ball competition as an end of year function. I will not be attending because I really don't want anyone to shoot me in a brain hole!

End of the year panic!

I must be honest, I have spent the last few nights pretending to sleep. Besides the usual - I have a baby lack of sleep - I have been quite anxious about all the stuff going on. Between medical, kids exams & end of year functions, holiday, trying to finish work etc etc, I am trying to do another painting to put into the King Georges Gallery. A holiday is definitely in order - and that costs alot of money, another worry. But I need the break and I am looking forward to it.

I need to drop a few things. I will be so happy to bring in a new year and hopefully leave a few things from this year behind!

I was wondering, wont I be looked on disapprovingly with really short hair in an Arab state? Anyhow, I will just show my elbows too, wear pants and walk in front of James! Ooh I am really "bad". No offence to those who are Muslim, I just don't agree with the whole black outfit. I quite enjoy being a liberated woman. No I am not going to burn my bra, after 3 kids, that is a really bad idea!
d:)

Thursday, November 13, 2008

Frank McMahon | Christmas Music


Deirdre Kohler | Latest Music

Uploading...

Well, I am busy uploading my Grandfather's CDs. Some family overseas were looking for them. It is quite a long process because the connection likes to bomb out on me. But anyway I am slowly but surely getting there. They are being put onto my other site : http://www.kohlerprojects.co.za/ for free download. I have also added some of the Christmas songs at the bottom of the page to listen too...

He really does have a beautiful voice. We have been invited to a picnic the the garden hosted my Divina, he will be doing a few numbers. Should be a great time!

I got a phone call from the Gamma Knife clinic in USA, its quite nice to hear the voice behind the email!

Tuesday, November 11, 2008

A wanna be photo

This was meant to be a photo, but it ended up being a video as the operator was challenged. Thanks Paul! You are a real "toy boy"

d:)
Maxine & I at exhibition




Trip postponed

Well, I am quite happy to postpone. I was so worried that we wouldn't make it in time that I just decided to rather be safe than sorry. I was having sleepless nights worrying. I have been in touch with my Oncologist, Medical Aid, Gamma Knife International and even phoned Egypt today to find out more. Plus I won't miss Leo's concert!

It is quite strange speaking strained English with a delay. I am going to try my best to get to have gamma knife surgery. If I can have the Gamma Knife, I am trying to get my medical aid to pay for it (Another big job!) So far they have been quite good. I reason that if they were going to pay me here, they might as well use the money there for a more effective treatment.

We are booked to leave (all signed and confirmed) on the 8th Dec and return on the 22nd. I have allocated an extra 3 days stay in Cairo to go to the clinic and hopefully have the surgery. If not, we are going to have a few extra days holiday... keep holding thumbs

What's happening with the family

This year, besides being full of hospitals, has been a whirlwind of activity. If I go into it, I would need a really huge blog! Anastasia turned 13 and is now acting like a teenager! She is going to high school next year. Recently she was in a dance show at the Opera House.

Adam finished this year with flying colours.

Leo is Leo and cuter than ever, he thinks that he is the leader of the family

















!

Monday, November 10, 2008

Good old printing

Well had to go get temporary passports - thx Davina. We should get them tomorrow, but we are cutting it really fine. I am considering having the gamma knife there. I sent all the CDs and reports via DHL today. Not cheap! I could have flown there myself! Would have been a bit tiring (;) ... sorry)
n
I can't belive I can't find the passports! I have been wondering around the house like a bear with a sore head (sorry again) Really it is amazing how much junk collects. I was tempted to start a bonfire... The golf course wouldn't really like that!

I found out today that if they can't do the whole are with Gamma Knife, I will probably have to have chemo... Oh this is a real saga...

Now my Gran printed my whole blog! Good thing when technology crashes! Retyping might be challenging!

Passports!

We cannot find our passports! We have looked everywhere, dug in cupboards, bags, the office, books, even bins! Plus of course the safe.

I am at my wits end... What to do?? We are just praying that it will come up. A miracle would be nice.

Anyhow, I am shipping my MRI cds to Egypt and USA.
d:)

Saturday, November 8, 2008

Finally up again!

Don't ask me to tell you why Life Logger has crashed, I have NO idea. Maybe it is so that I have work to do? I have so missed having a blog!

This week I have investigated going to Egypt and Dubai. We are going on 18th November(assuming all the visa's etc are done in time) I went and had an MRI scan to see if the tumour has grown. It hasn't so I am not too worried about postponing treatment.

I have been investigating Gamma Knife treatment as a serious option. I am sending the latest scans (taken on Thursday) to USA and Egypt. I have phoned my medical aid to see if they will cover it. I need to get a reply because it is a very expensive option.

The only concerns that I have are that if the tumour is larger than 3,5cm, I won't be able to have the treatment. Also is Egypt an option (reputation etc) so that I can do it all at once. If I can't have it done, I will have to come home to have radiation and chemo --- No! That is NOT something I want to do.

I have planned this trip so that I won't miss kids end of year functions. Now I was told that Leo (my baby) end of year function is on the day we fly back. I nearly cancelled the trip. I think we should try do a standby. Unless of course I decide to have the operation in Egypt then we will have to delay our return date.

Catch up with you all soon! I have missed you!!

Friday, November 7, 2008

Test

I am Setting up this blog because my life logger seems to have crashed

Monday, November 3, 2008

Gamma Knife?

I hate to get excited before anything happens... At the beginning of the year when I was planning the trip to Egypt, I noticed that they had a Gamma knife clinic. So I sent my latest and old scans. I got a reply from the London main branch today to say that I qualify for the surgery (right size etc)

I am going to try combine a consultation. Gamma Knife is non-invasive radiation "surgery" This means that they use a scanning machine and on the PC, pin point the tumour. The machine then moves and the radiation to that exact point. The surgery is done over one day.
More info :http://www.internationalgammaknifeclinic.com/

Sunday, November 2, 2008

Egypt?

At the beginning of the year, I booked a trip to Egypt and Dubai. It included full tour for 7 days. I have paid half of it. So ANYWAY I went to the travel agent to cancel. She suggested that I ask my doctor for a medical certificate, saying I can't travel ,so that I can get a full refund. When we asked the doctor, he said I CAN travel while taking my chemo pills.

I don't know about the rest of you, but the thought of being tired and sick while climbing the pyramids, ws not exactly what I planned. So then we got to thinking, could we maybe go anyway? The trip is booked for 3 weeks time. The doctors have delayed the treatment for 5 weeks since they told me. They are doing the treatment over the tumour's margin anyway. Also I only seem to have low grade cells left. They seemed to have got out about 95% high grade. Any high grade that there might be is around the edge and can be removed.

This means I will start treatment 31/2 weeks later?... What do you think? I will ask the doctor for his advice. Personally I don't think it will make a huge difference waiting.This will give time for my scar to heal before they radiate that area... I will be sick for 6 months after radiation... So much to decide. James is keen that we go, he says we need to take our mind off all the pressure this year.

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