Thursday, October 28, 2010

Bad news

I heard this evening that the exhibition has been postponed indefinitely. This was quite shattering. After the hard time I get getting to this point, it is terrible to be disappointed like this. I feel like I also have let everyone down. I suppose it is another reason why this is not a good idea (duh)

I just don't know what to say or to do. Now really isn't a good time to going on an expensive holiday.


My book is printed for what it is worth! :( :)

Tuesday, October 26, 2010

Nearly there!

Well my tickets are booked, my passports have arrived, so now I am just waiting for my UK Visa. (A very important thing in this trip!)  I still have this flu thing and the vertigo (in my opinion) is definitely due to the anti-seizure meds. Every time I take one, within 40 min I start rolling around like I am crack or something.

So after contacting Dr Butler, he has reduced the medication. Then there is the other problem that this will increase my risk of a seizure - which is really bad timing considering I am off to the UK this weekend (visa permitting)!!

I am looking at this as a working holiday. Which between the talks, travel, exhibition and book, I don't think anyone could argue this fact. Not normal earning work but rather something that requires my attention. I have this continuous need to think of ideas / goals and aiming for them. It is to my own credit and demise. I said to my mother yesterday that it is so frustrating that my body doesn't co-operate with my will. I cannot stop the creative side so by body stops it for me!

There is so little happening in SA to support Brain Tumour Victims. It is actually quite scary. This fact, combined with the relatively small research funding on brain tumours verses other cancers, makes someone being diagnosed left totally in the dark. In chatting to James this morning, I said to him that most people who hear you have a brain tumour think that "this is the end" This causes an apathy towards helping patients heal. I must be honest, I thought this way about people with liver cancer.

So I hope this trip will give me some ideas of how to help in South Africa.

Thursday, October 21, 2010

Vertigo Panic

Well the arrangements are in swing for the trip and the weeks are no less than FLYING by. We are still trying to get our Visas sorted out, man everything requires more time than you think! So yesterday I just prayed and said to God that he needs to take control of the situation.

SOOOO... last night I got the worst vertigo and even battled to turn in the bed. My stomach started cramping really badly along with its twin, nausea. I felt my brain holes (which as some of you may know, I use as a gauge) and they were slightly more swollen than usual. I went into a flat spin imagining brain surgery and chemo standing at my front door. Needless to say my prayers went something like this "Dear Lord, I only want to die when I am really old - and without pain"

At about 5:30 I spent a bit of time thinking it through. Wondering if I should cancel my trip etc etc ... THEN I REMEMBERED. The late Mark Miller's blog had an entry about a year ago where he described the same symptoms. Apparently it is a side effect of the epitec I am taking. When the toxicity levels in my body get too high, then the body fights back. Thank goodness I read that post and he shared it with us. Another good thing about the blogs - even after I have been battling with the losses.

So like I said, I am now in rehab (that being my bed) with nothing to do or eat (don't tell my mom I am on the computer). I don't even get "happy" recreational drugs first to make this fair.

Every time I get up I have to hold onto something.

Oh dear ... all in a days work!

Friday, October 15, 2010

Still here

Every time I check on a fellow brain tumour blog I get more and more depressed. There are some of us that are still fighting fit and others that are slowly going down. I take it absolutely personally.

I got bad news today. The money I have been waiting for, from the sale of my house, has yet again been delayed. I actually burst into tears, to the shock of the staff. I have been on a knife edge financially (as I am sure many of you have) and was planning to use the money to pay for the tickets for the trip to the UK. It seems like everything has just been so difficult this month. I slept for 4 hours yesterday from pure exhaustion.

I have LOVED giving the talks and feel that is what I should be doing. Can you believe that for the first time since my operation, I actually watched the video my mother did of the first week in hospital. I am going to try get it onto You Tube. For the first time I saw James walking behind me hiding the tears.

Watching people die (online) is HORRIBLE. So even after a hard couple of months, when it comes down to the very core, I am still here and just have to thank God for that.

Thursday, October 14, 2010

Fashion Show

Last night I was invited as a guest speaker in a fashion show to raise awareness for cancer. My talk was much "lighter" than I normally do - considering the function. I had such a good time. Finally I was a ramp model!  ( I had to give my talk from the ramp) I am so short that I was only slightly taller than the average sized folk - even being was on the ramp!

Talking about it is so strange, the whole thing is bit of an out of body experience. I can't believe what has happened in the time since I had the tumour. It was amusing seeing the audience gasp when they saw the size of the tumour on the screen. I have a bit of a wicked sense of humour!

Today my mom pulled up a video that we did when I was in hospital. Do you know that I haven't actually watched it (yes ever!) So today I had a look at one of the videos. The thing I noticed today in the movie was James' face when they were pushing me into surgery. It just reminded me why I love him and that I am loved. I also noticed I am looking a bit older these days! NNNOOOO ...

Thanks to Lindy and Gareth for organising the function. You can look up blushing bride on facebook for more info...

Sunday, October 3, 2010

What to do

I was chatting to James... saying that it is really hard to run my blog now as there is not much brain tumour stuff to talk about. Sad but good for me! I have been looking at a couple of the blogs that I have been following and got more bad news today about a blogger who died after a long fight with a brain tumour! SO not having any news is definitely a good thing. I really hate brain tumours (I think this is probably the first time I have said this online) The last couple of months I have been pretty preoccupied with work, coffee shop and talks.

I am wondering where life is leading me these days. So much has happened since the tumour and so much more good than bad. It does sound like a clique. I have done so much more than I every thought possible. This is probably because the fear that we have in changing our lives disappears.  Your illness tells you, in no uncertain terms, that you HAVE to change.

I am really looking forward to going to the UK at the end of this month. We have big plans to travel around the world. Sometimes I do wonder if what I have been through is for a higher purpose. I suppose we all wonder "meaning of life" questions. I do believe that God leads us. We just have to get onboard! Perhaps getting sick means you have absolutely no control over your life and hence you don't have any problem with being lead.

BTW Leo told me he had a headache in his bum (had a bit of gastro!) - I think he is hearing way too many "brain" references! LOL

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