Sunday, August 31, 2008

Discharged

Well I have been discharged! I am so happy about getting out of there. I was a bit nervous to leave, as I felt some sense of security being in the ward.

The hardest part for me, was when the doc came in and took off the bandages. To see the scar and no hair. I REALLY hate looking at it.

James & I are staying in a small townhouse flat literally next to the hospital. Its great, got everything we need and is quiet. So all I need to do now is eat, sleep and get stronger (back to being a baby) Hopefully my hair will grow at some miracle pace!! James can at least have some break too... He is looking quite tired and stressed. We are going to try and see how many DVD's we can watch!!

We are going in for the consultations, reports and checks on Thursday and Friday. Our plan is to get back home to PE on Sunday. We haven't worked out any logistics yet.
Its through the Grace of God, power of pray, love and support that things have turned out so well. I pray and trust that I can leave here with peace of mind knowing that it is over and I am better. This wasn't exactly in my life plan!!

So the only thing to keep me busy now is to make a log of my eating and sleeping!!

Saturday, August 30, 2008

AAAGGHHH

Today I am feeling extremely sorry for myself. Looking at the bruses does not help. Plus I have had the most irritating thing, they only bandaged one ear so the other one is getting quite cold. (Cape Town is having bad storms)

I decided to not move out of bed and just complain. By lunch time I realised this is not going to help me recover and I should at least go for a walk. It actually helps.
I am relieved that my side effects are far less than they could have been.

When I came out my vision was really bad. I couldn't focus. I only struggle now with the amount of light and eye strain. I battle to watch TV or laptop for more than an hour.
For the first 2 days I had these weird flash backs of things that I had seen out the side of my right eye. Nothing scary, just like walking past a pool or seeing a dog. Thats gone now. Maybe it was remapping my memory.

Pain is like a wong wong feeling (think star wars). BUT now they have now taken me off the real drugs because I had an allergic reaction. So now I am on Paracetamol. WOW. Last night I was in real pain that felt like a big throb.
Sleep is impossible. I have got 4 hours in one shot at best. Sometimes I have really bad dreams which wake me up feeling confused and as if I have fallen or been hit.
Short term memory is a little bad
Grammar and spelling is difficult and does take me a while to read over and check... Especially when I am tired. This is what I am giving the most focus.

BUT these are all things can be fixed and I feel I got away lightly... So I can handle it!!

Zen Master




I am feeling absolutely exhausted and weak. as in "oh no do I have to go to the loo" So I have spent all day in bed, other than one walk I forced James to take me on!! (In between rugby games)
James, the Zen Master says that he has leant the art of being able to lie down, in the same position, for a long time without getting bed sores. He said he would teach me!! Yuk---- no it is not that bad!! (anyone who knows James will understand)
The hardest part of this is I have never been able to get my head (sorry) around this illness. I don't mean "why me" rather "is it a big problem or will it slightly lower my quality of life" It has NEVER felt real or part of me, still after all this. The symptoms I have been experiencing have been so vague, headaches aren't exactly top of serious illness lists. Needless to say, I think it is probably easier for others to find it serious.
James has been talking to me about the weekend when all the drama happened. After the 1st op and I deteriorated, he and the doctors had to decide what to do. If they took the grit out, and didn't test me before the main op, I could loose my speech. If they didn't and left me in that condition for a few more days, I could have had a stroke or be paralysed. I don't go through any of those questions or understand what is happening, so no worries on my side.
I was never really worried about side effects, I was rather scared of the actual operation (is it necessary, what about death??) So I am amazed how blessed I am to come out the way I did. (I think the Big Guy must have a special liking towards me)
Don't get me wrong, I have had side effects... but that will be another blog.
So... I am starting to realise the enormity of what I have been through! (I am a bit slow!!)
For now I will keep using my blog to keep my mind active!! I am going to try get some pics of me in the operating room to put on the blog!! I will probably kick myself for showing the world these unattractive photos / videos!!
d:)




Friday, August 29, 2008

What I miss

It is strange what you miss when in hospital... And it is usually simple things...
Being able to make a decent cup of tea or milo (This is the biggest)
My hair (obviously)
Quiet (this is also usually hard at home anyway)
opening a cupboard to find something new to wear
having something to do in the day or go somewhere
all my family especially my kids

Thursday, August 28, 2008

Size of tumour

I suppose I never told anyone... Alot of the tumour is out. About the size of a small chicken egg. The doc says he feels he took out about 3/4?? or more?. When the brain swelling comes down and I can go for a scan then we will have a better idea.

He said the tumour only touched the speech area so he left some there so he wouldn't destroy healthy tissue.

We are waiting for the pathology report on the type and grade of tumour.

My comments to you

I hate soppy but this is so important for me to say…
I need to say that I have so enjoyed your comments, emails, sms's, visits, flowers etc. The smallest things are big. It has made me feel loved.
I don't feel like I am brave or strong, it is everyone who has carried me through this continuing journey. If I as on my own, I wouldn’t do it(seriously). My family have been the strong ones (especially James) who has cared for me beyond any normal person.
There is definitely a God. With people praying you can feel the presence walking next to you
I am so blessed in all areas of my life and I am grateful that fixing up my body is my only big worry. Luv d:)

How hot am I

Being here is not very fashionably. My body is looking a bit different!!
Hair gone, (although they gave it back in a packet)
A sporty scar
The opening of the scull has left big bruises on my side and one eye
I have a strong suspicion that I am going to need to work on my butt muscles
I have needle bruises from both hands around my neck and back again. The needle in the neck is very disturbing.
My fashion sense is non existent.
Globs of brown sticky bandage

Plus people ask you very undignified questions. (do I really have to answer that?)

Ok having your brain chiselled into is not really a highlight. Supposedly there is less physical pain cos your brain doesn’t have pain nerves.. MMHH
The worst part for me was the vomiting, really I can’t stomach that…

Believe me or not, I am actually not worried about that… I want to get better and feel like a adult human again. I completely sympathise with babies.

Boys will be boys

The one highlight I get when High Care is to be bed bathed (lucky I have passed that)… I feel so mature. Now if they used products that are a less bright pink and jik like, they would be half way there. I suppose I could imagine that the hundreds of needles are actually an acupuncture treatment (this would be stretching my brain – you know the head jokes are going to happen)
Well I cried with laughter because a guy - Jason (also 32 who for brain operation who come in after me op) had a male nurse washing him. It caught him by surprised! Well when the nurse told him he would be shaving him too, he started to get really worried and his voice changed 2 octaves. I couldn't keep quiet and I suggested that he do a Brazilian to make a fresh start. The male nurse, playing around, said that he could do it. I mentioned that he would be able to run faster during recovery. Well we all started laughing really loudly. Then another nurse said we shouldn’t be making a noise in the ward, but that rule only applies to other patients to protect the brain surgery patients!!
When I say boys will be boys, it applies in all circumstances. The Jason is very protective of his family jewels. He had just had brain surgery ( I would rate this in the top 3 hectic operations) and he wanted the catheter out in case it damages those assets!! How he was planing to rush to the loo was a mystery to all of us. Even James got a little quezy when they spoke about it and inched lower. All I can say is that goodness men don’t have to go through childbirth…

Wednesday, August 27, 2008

Quick Catch




I have missed getting onto the net and catching up on all the news. (computer addiction). I will be giving you all the quirky stories and strange side-effects (and they are quirky) on what happens when someone digs in your brain. I am pacing myself!! The first op went badly and I deteriorated. I was getting sicker and sicker. I don’t remember Saturday at all or being rushed for the emergency 2nd operation. Needless to say, I was really scared for the 3rd op!!
But, all I remember from coming out of the last op, was that they were shouting “Mrs Kohler, Mrs Kohler” and tapping me. I was so irritated because I hate being tapped and I was having a nice nap!! But amazingly my speech was not affected. Sorry for James I still talk a lot!! Before the op I couldn’t tell you what a nose or fingers were.

Today I am feeling very weak and cold. I have never been a fast walker but this is going to another level!! (serious need excercise) I have to lie in bed. Sleep is difficult. In High Care they check on you every 30min – 1hr

I will be in hospital for a while. At the moment we are waiting for the blood tests to analyse the tumour. I asked if I could have a piece of the tumour (curious me)and the doc just laughted because he said it has been sucked down a microscopic tube. Also waiting for the MRI to see how much of my brain is left.

Ignore my previous weird blog cos I can see it is weird. Writing helps with recovery! (back to grade 1)
Luv to all dJ
PS Thanks for your comments, calls and SMS’s. Its great to have my mom as a hotline.


Monday, August 25, 2008

Images from 1st surgery







Sunday, August 24, 2008

Missing info







Hi there, I seemed to have lost info after the 1 & 2nd surgery as I did not write it and they were not backed up. My previous blog site seems to have crashed... I will try find it but here are some pics in the meantime
As you can see, it was not a good time!






Thursday, August 21, 2008

Removing EEG




Here I am have the electrodes removed. They stuff they remove it with smells awful.

Wednesday, August 20, 2008


I really didn't have a good start this morning. My headache was quite bad but as usual it gets better as the day progresses. By the evening I am back to my normal self …
All the docs have been to see me in preparation for the surgery. Most of the results of the tests over the past 3 days have shown that the problem area is definitely around my speech and memory. The good thing is that all other brain activity is working 100%. The Neuro phycologist said that my frontal lobe activity is actually very strong and seems to be compensating for the lack in my temporal lobe. The advantage with it all being in one spot is that I don’t have to worry about operating in any other area of the brain. (as advantages as it can be) So they will be putting a 64 points (8x8) in the area and monitor mostly my speech and language. I have had such good reports on Dr Butler (Neurologist) and Dr Melville (Neurosurgeon) they are considered the second in the world. There are a lot of foreign patients.
So it is time now to tackle this tumour and get on with my life!! Good night and I will get James to do some pic’s and video’s of the surgery and after. I will get my mom / James to put up a note after surgery on the status…
Luvies d:)

Tuesday, August 19, 2008

In hospital

Well finally I am here... I know a weird comment. I spent the morning doing memory tests... quite gruelling. I don’t think I did well cos I was so tired…
So now I wait to have a seizure. The guy next to me had a seizure this evening and it is quite scary to say the least. It is all part of the mapping process. The girl next to me has been waiting for a seizure for 3 weeks, they can’t operate until she has one. So tomorrow they are going to use electric impulses to try to make one. Wow…
I feel better because the doctors and nurses are really on track and organised. Seeing people come out of surgery and recovering well is assuring. They say the boredom is the worst. We are literally in bed and only unhook to go to the loo / bath…

Friday, August 15, 2008







This is the pre-op scan of the tumour. The size is 7cm x 6cmx 5 cm

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