Tuesday, December 30, 2008

Don't laugh

I read on an website that this guy prefers telling people he has a "Brain Tumour" rather than "Brain Cancer" I so agree. It just sounds milder. At least mine is low grade. Still dangerous but I have more time for treatment than most.

I have this terrible dilemma. When I get nervous I laugh. So when I walked into the chemo room, I really had to control myself from laughing or even smiling excessively. (Don't want to cheese anyone off) It is something that has got me into trouble many a time!! I managed by looking around at the reading material which I have read 1000 times already.

The people in the chemo room (having IV treatment) seemed to be in good spirits. They had their books, friends and snacks. It is quite surreal. It almost appears normal. Like you are at a pub, just have IV drip instead of beer. (Probably has the same effect) There are some people I know that would rather be able to drip the beer into themselves.

We all know that they have life threatening diseases. I am just so glad that I don't have to have a drip. Needles and I are not friends. Taking a pill seems quite insignificant. A glass of Champagne would go down better.

Eating for life

Chemo has been fine. I think it is too early to tell just yet. I get this strange cold feeling running through my veins. It seems to last about an hour and then go away again. There is a little bit of nausea, but I take the anti-nausea and that seems to work. I take a regular afternoon nap so tired ness seems manageable.

I have been eating up a storm. Our fridge has never had so many health foods or been so full. I keep looking for chips and chocolate. Has anyone every got fat while on chemo? I think I might be the first one in history.

My blood counts is very good. I am so impressed. Obviously my body is not as week as I thought!! Must be the health food and the tons of vitamins I am consuming... Can't someone invent a super health food that is in a chocolate. I prefer Cote D'Or (dark with nuts)

Monday, December 29, 2008

Cyborg II

Well the first day of radiation and chemo went quite smoothly. They put me in an alignment machine first to insert the plates and check that the radiation beams would hit the right spot. Well I really do feel like a cyborg. The mask they put on is really tight and all that sticks out is your nose (something like Hannibal) You get rotated around the room with red alignment beams. Because you can't see you have no idea where you are in the room. Thank goodness I am not claustrophobic.

The actual radiation is fast - about 10 minutes start to finish. I have 3 main beams that come from different angles into the left side my head. The radiated area is about 10cm x 10cm (This is LARGE) They took the size of my tumour before the surgery and have built a margin on that. It is a cut out area so its an odd shape.

I was told again that I will loose my hair in that area. (I really don't want to hear that) So I am going to have a big 10cm "hole" where there was once hair. NOOOO.... What is it with brains, chemo, radiation and hair?? Then they added that there is a very small risk of your hair never growing back. (I ignored that) Any ideas on how to manage that? If men can have a comb over, why can't I? James suggested that I just shave everything. Then I will have to shave the other half of my head everyday... Maybe I can just use that spray on hair...


The ladies complained that my hair has grown so much since I had the mask fitted (6 weeks ago) that they had to adjust it because my 3cm hair was pushing it out. Thank goodness I didn't put hair extensions in!!





PS James is a budding photographer and has not learnt the art of how to take a photo without making your arm look huge or your toes skew. Of course these things are usually perfect.

Sunday, December 28, 2008

Back to reality

Last night was plagued with weird dreams and concerns. I can honestly say that for the first time I felt really worried / nervous about the radiation and chemo. I felt like I did the night before the 3rd operation. It just seems like the reality set it and hit me hard. (Yes I am slow)

Besides the normal side effects that concern me, this means a change of lifestyle. Even if it is temporary. All of this is quite daunting. Being out of control of your own body is really horrible. I have never been keen to do it but I am reluctantly going forward. I am at that stage where "this better work" Tired of being messed around and having my emotions on a roller coaster.

I have learnt one thing through all of this, never look at stats just before you embark on treatment. (I mean look at it long before you start) Otherwise all the negative stuff flies up to greet you with a bang!!

I will have to have blood tests first to check my platelets. Then it is all go. Physically, I am feeling good. I have enjoyed my holiday, eaten well and I am looking forward to relaxing at home a bit. It is still hard not to feel like "used goods"

So my most important new year resolution is to get healthy (total healing being the optimum!)

I had a good laugh, James' Aunties have recently moved into a retirement village. The sisters went to the normal end of year Christmas dinner. Not knowing anyone and feeling a bit awkward, Glenda's opening line was "Isn't it bloody awful being old" .........No-one found that funny?? I wonder if I can use that line?

Friday, December 26, 2008

Some Christmas pics!




Wednesday, December 24, 2008

Merry Christmas

Hey all... Just want to say that I hope you have a very merry Christmas. Enjoy the kids, the presents and the food! I am going to eat up a storm in preparation for radiation and chemo on Monday :(

It is great being at home where I can see the family and everything is so cheap!!

Lots of love d:)

Monday, December 22, 2008

Burj Al Arab (Tee met Koekies)


This has been the highlight in Dubai. Don't even ask how much it cost to have High Tea on the Sky Lounge on the 27th floor. The food is great and we had our fill of sandwiches and cakes. James tried one of the large selection of teas - Gun Powder tea. (This is no joke) This made him feel manly and connected with the tea. I settled for something a little more feminine "Lotus Blossom" A glass of Moet to go with the tea and cakes and the most awesome views.

The building is very impressive. Interior and exterior are entirely opposite. The outside is very modern and high tech and the interior is full of every colour and looks almost baroque (in English this means too much stuff) You can see the islands they are building in "the World" and "the Palm"

It is really amazing how Dubai has grown from just about nothing 15 years ago. I wouldn't live there though. Like I said, it feels too commercial and doesn't really have history. I was expecting a lot more Arab influence, but it is very cosmopolitan.

Sunday, December 21, 2008

Dune Dinner

We are only going to have a look at the buildings today. Yesterday we went on a dune drive and dinner. Actually it was a dune bash and a REALLY BAD idea. I thought we were just going to go on a type of 'safari' I was sitting in the far back when we started and immediately didn't feel good. Head clicking went into overdrive! They put me in front which helped slightly. I spent the whole drive praying it would finish and that I wouldn't throw up.

Traditional dinner and belly dance was great. We were rushed around and told we should try to run back to our 4x4 before the crowd, We weren't sure why there was such a huge sense of urgency as we finished at 7:30 pm but I was quite happy to have the whole ordeal over.

I am really missing my home and kids, We have been relaxing and will do a bit of shopping and sightseeing for the next couple of days, I am not booking anymore tours!



Departure from Cairo

This is what the train looked like!! Cool hey...

The departure gates at Cairo International Airport are much better than the arrivals. Which unfortunately is not saying much. There are no boards or announcements telling you when your flight is ready for departure. There is a food court in the centre. We were wondering why this guy kept walking around shouting. We soon realised that he was making the boarding announcements!

Dubai feels almost oppressive. The airports are quiet, probably because they are well designed. But also with the economic meltdown, they say tourism has dropped by about 60% We wonder who all is going to stay in the buildings they are making. There are 1,5 million people living here of which only 300K are locals the rest are all foreigners.
Jokes, that was the train next to us ... ours was just a little bit better






Thursday, December 18, 2008

Brain tumours & environment

I have been following Mark Miller's blog. There has been cases of clusters of people with brain tumours appearing in close vicinity to one another. There is currently a study going on to see what role the environment has played. Considering only 20 000 people are diagnosed with brain tumours per annum in the USA, this is quite interesting.

Anyway, I won't go into detail, but if you want to find out more visit Mark's blog www.markmillermusic.org/blog

It really does make you think though...I grew up on a farm so I am not sure how that works. I always knew I shouldn't have run after those sheep. It was probably their stupidity that destroyed my brain cells!!

Wednesday, December 17, 2008

Alexandria




Its a very pretty town (excluding the soot, dust, carbon ) If you don't want to see all the dirt, go out at night. Which is what we did. We have seen the normal sites and decided to go to the Fish Market restaurant. It is overlooking the med. The amount of salads was intimidating. We picked fresh fish, but I made sure there was no face or eyes when it arrived.

We get alot of stares. I don't know if this is because I am the only woman with really short hair or super white by comparison. Who knows, maybe they like James! Did you know that James kissed a man! It was really funny because the men kiss each other on both checks with a light hug. Sometimes they stroll hand in hand. This is custom. The tour guide grabbed James & did just that ,,,much to his surprise!

Sleep in?

I always feel guilty if I sleep in or stay in my room if I am on holiday. Its like it is a waist of money. When we were in Paris, we had spent the whole night out and the next day decided to sleep in and get room service. When we ventured out at 3pm, the manager was disgusted and asked "Why you sleep all day"

Last night was one of those. I didn't feel well at all and decided to rather not move and stay in bed. So this morning I am taking it slowly. We actually came to Alexandria to have a break from the rushing around touring. Our hotel is in walking distance to most of the sites... providing you can cross the street

Some interesting things...

This is going to be our last day touring in Egypt. I can't believe how quickly the time has gone. We have learnt some things the hard way but we have slowly started to smarten up!

The place is very dirty by our standards. The floors, streets, doors, walls, seats are all full of soot. It doesn't seem to bother anyone either. Most of the work force are men. They do everything, housekeeping, maids, cleaners, waitrons etc. (maybe thats why it is not so clean!) Only about 10% seem to be women.

Don't greet or look at anyone if you don't want to pay them money. Its nuts. The traders here are absolutely bullet proof. They will follow you for miles and don't seem to care. If one approaches James now he just raises his hand and says "No" Even that doesn't deter them.

They have every type of vehicle on the road, even horse drawn carriages. We are right on the beach front, on a main road, so the hooters and cars go 24hrs per day. You won't believe that one guy on a cart stopped in the middle of 4 lane traffic, got out of this cart and ran after us asking us if we want to get in!

Yes, we do feel like we are living inside a computer game like Mario Brothers. You are dodging, diving, hiding, avoiding, running, watching --- :)

I wouldn't come here on my own. Get a tour group, they do everything for you. Pick ups, drop offs, tours, tell you where to buy food, carry your luggage. As I said before, their service is great. You will have to tip for everything, but it is worth it.

I have had a great time here despite all the little quirks... d:)

Tuesday, December 16, 2008

DNA

We took a walk to the Alexandria library today. (crossing roads and trying not to be run over- we looked like we were playing Mario brothers game) It is impressive. The architecture is interesting, it is shaped like a tilted disk and represents the sun rising out of the sea. We were there for a few hours and didn't even get past one area.

We looked up some books on DNA, brain tumours and various brain issues. I have been doing alot of research. I have found some fascinating facts.
  • The oligoastrocytoma and oligodendroglioma has a potential to have defection on the 1 & 19 th chromosomes.
  • There is alot of research on the 19 chromosome. There are about 1400 genes relating to various disorders/ functions view on website: https://www.llnl.gov/str/June03/Stubbs.html
  • One of the disorders is called Familial hemiplgic migraine. This type of migraine displays all the types of symptoms I have. Plus I have a few members of my family (especially my Grandfather) who get serious migraines like this (see http://en.wikipedia.org/wiki/Familial_hemiplegic_migraine)
  • It also links this type of migraine to chromosome 1
  • There is also a link with lack of vitamin b12
I don't know if this has any significance and I haven't had a DNA test yet (my oncologist told me they only do that type of thing in the US) but it is interesting how things are linked. I believe that all these things are linked somehow.

Maybe my interest is because I had a seriously bad headache on my left side, I had to come back to the room and slept for 2 hours. When I woke up, my whole body was in pain.

Otherwise, looking out at the Mediterranean is awesome...

In Africa

We have been chatting to our tour guides & coordinators about South Africa. There is alot of crime in SA and we were asked why do we stay there? A hard question to answer. What we did tell him, is that it is very beautiful and our living is good.

Our food is better and well made.Their food is about 2- 3 times more expensive compared to SA. Our accommodation is much better. I think that service, though, is better in Egypt. I cannot find another place that I would prefer to live.

One guide asked us if SA was full of cannibals! They assume we live in rural villages with people running around with pangas eating each other!! Another guide didn't know why a black woman was talking in clicks. He thought she was mentally unstable... he didn't know that was her language and walked far away from her!! We had a good laugh..

Chemo & radiation confirmed

My chemo and radiation has been confirmed for the 29th December. I have not thought about it much, but every now and then it pops up! They will have to check my platelets first to make sure they are high enough. I am trying to eat more than usual, but the food doesn't always help the cause!!

James has become addicted to their cinnamon jam breads and it is the first thing he runs for at breakfast. They seem to like a lot of milky products and it doesn't taste like cow milk!

Monday, December 15, 2008

Tour Guide


Our guide was very kind to welcome him into his home and have a traditional Egyptian meal. We enjoyed it. We had pigeon! (Well James ate that & I stuck to the lamb) We were put at a table to eat by ourselves and they waited till we were finished. It was a bit strange for us to not sit and talk to our hosts while we ate. I do find that the culture gets very upset if you don't finish your food! I am not a big eater so this is always a challenge. They only eat one meal per day and perhaps a small snack some other time. I tried to explain I can't do the one meal a day thing!!

He has 3 kids, 2 girls and a son in the middle of the two. The houses are very dusty and unfinished on the outside, but the inside is clean and neat. I suppose that it is futile trying to fix the dust! We walked back at 11pm and the streets were still buzzing. He is an archeologist and has worked and traveled to the USA. He says that there is more money being a tour guide than working for the state.

His name is Ahmed Dewy Hassan, he speaks English, Arabic and Italian. If you are interested you can contact him ahmeddowi@yahoo.com (don't worry I am not getting anything out of this!!)

Sound & lights



This city at night is really beautiful. There are a lot of lights and festivities. The cars even stop at a red robot!!The temples lit up are really amazing. The city really comes alive at night. It is quite amusing because it is about 18 degrees C at night and they think it is really cold! The shops stay open till later than 10pm. They do close in the afternoon to allow people to have a nap. I do that anyway, so this would suit me!

I haven't been able to load my blog on the internet because the reception is really bad when going down the Nile not to mention that our agenda is a mile high... We are flying back to Cairo today and then taking a train to Alexandria.

Stuggling

Today I have really struggled. I canceled my afternoon tour. We are both exhausted, physically and mentally. We are not sure if we can take in anymore hieroglyphics. In the morning we went to see some of the tombs. I was feeling dizzy and very weak. The tombs are really high and the steps very steep. I waited outside while James went in. I didn't want to go into a hot and stuffy tomb and have the risk of fainting or worse having a seizure. I think I haven't had enough sleep and need to catch up. Anyway, we are going to see a light show tonight and have supper with our tour guide, which I am really looking forward to.

Belly Dancing


Last night we had a party on the boat while we were sailing to Luxor. I got persuaded/ forced to Belly Dance on a 'stage' I was really embarrassed, but James says I did well! I think he is just trying to be nice. It was so funny to see people dressed in traditional outfits. Everyone got into the spirit of things. No I did not wear a traditional belly dance out fit.

Sunday, December 14, 2008

Sailing down the nile

We are floating down the Nile. We are stopping at a few temples and sights. We were given a wakeup call at 7am breakfast and then the first tour at 8am. The boat sets sail at 9:30 and so it goes on during the next 2 days. James & I packed a little kit bag with water, sun block etc, expecting to walk. As we stepped out of the boat, the temple was about 250m away. We felt a bit stupid.

There is a party on the boat tonight. We can drink as much as you want and crawl to our room. (these days it is not a very good idea for me, but the thought is good) Although, drinking here is not cheap. About $10 per drink. We were reading this book, the author was asked if he was an alcoholic. He said after years of time, money and effort, he would hope so!!

Temples



Saturday, December 13, 2008

Nubian Village


Some of the food is really strange. We had a Nubian traditional meal. This consists of a SUPER sweet honey, bread & a milk that has been left standing till it forms cheesy chunks. Makes me gag. Don't order tea. You will get frothed milk with very little water and a tea bag! Euw, thinking about this too, makes me gag. I would rather have the water from the Nile. I found out that it is called a Lipton Latte. I am sure they have camel milk. The meals on the boat are really great and well cooked.

Each Nubian has a pet crocodile, this is no joke. They take them from young. It is a tradition that has been passed down for a long time and no-one knows why! James is holding a baby one with another one on his head!

Going to the Nile

Well we left Cairo at 5am to go to the airport and take a plane to Aswan. At the airport there is only one terminal. We all just pile in and sit anywhere, floor, table, chairs & steps. It doesn't matter what flight you are on! Someone shows out the flight number and everyone pushes to the front.

You won't believe this, the airport buses hoot each other out the way on the airport runway! We saw a plane land really close to us while we were waiting to take off, James was wondering if planes hoot at each other? I do find that when I fly followed by bumpy roads, my brain feels “bruised'

Aswan is beautiful, it is like the Egypt that you read about. Lots of people in cotton clothing, great weather and of course the Nile river. We whipped around the city, dam, Isis temple, Nubian village, onto the boat.

James & I feel like we are on “tourist boot camp” Up early, running around, bargaining, climbing etc etc They said that we could leave on a tour at 3.30am tomorrow – Umm “NO” This is taking “holiday” to a different level. Sorry to say this, but we now understand where the word “gypo'd” comes from. We feel like our money has been sucked out of us at every corner. “Bargaining” is tiring and the traders will not let up. If you stop or look at them, you will have them follow you till you break down and buy something to get rid of them. We eventually paid 40LE (Egyptian pounds) after being told it costs 150LE. It all part of the experience...

Now our boat really is 5 star. We have a beautiful room, flat screen TV, 5 course meals & entertainment. Now this is what I am talking about!! I could get used to this! We set sail tomorrow...

Thursday, December 11, 2008

Luggage

Forgot to tell you that our luggage arrived last night at 9:30! I was so excited to have some clean clothes and cosmetics!

Crazy

I cannot tell you enough how crazy the traffic is here. We just came back from the biggest shopping centre. We decided to avoid the markets. James & I didn't need to buy anything and really didn't want to be haggled. Serious, its on every street corner. PLUS I needed to go to a coffee shop - some words are international and in any language - coffee being one of them (most alcoholic drinks too!!)

So back to the driving. We took a taxi back, this guy started by charging $10 and ended up charging us $20 because he "didn't realise it was that far". PLUS he couldn't speak English so he "explained" this increase by means of shouting and waving his arms. When we arrived at our hotel, we were just so grateful to be alive, we didn't bother to argue. James says he couldn't care about the money.

He went in and out of traffic like there was no tomorrow. He played his Arabic music seriously loudly, smoked and screamed at the other drivers whilst holding his hands almost constantly on the hooter! With the final day of Eid, there are alot of people going to Mosque and on the streets. He was nearly trowing a few of them off his bonnet. His car is old (like from the 70's) and black and white. The trip took an hour! I can honestly say I have fully experienced being in Cairo. All good fun!!

One thing I still can't cope with is the women wearing all black. Some of them where black shoes, socks, gloves, veil - you can't see any skin. The men walk in front of them wearing designer labels. BUT most women seem fairly liberated and just wear a shawl and dress conservatively.

We leave the airport at 5am tomorrow. The travel agent phones and says that he will give us a wake up call at 3:30am - WHATEVER - I 'negotiated' for him to call at 4am - we are so excited to be up before our eyes can open.

He said he will give us a 'breakfast basket' We don't know if we want it. The food is cooked so badly we are living off bread. It makes me realise how good it is in South Africa. Our tourism is much better.

I am excited to be heading off to the Nile boat. We are taking a flight to Aswan and then going to cruise down the Nile to Luxor. What a fun time so far....

Wednesday, December 10, 2008

Day one

Well we were up at 6 to get dressed (I changed my underwear) It wasn't really hard to make a decision! Our luggage arrived tonight at 9pm - the locks were broken but all seems to be there. I ended up buying shoes at 9pm last night. Shops are open from 6pm - 10pm here

Man, when you are on a tour, it is GO GO GO! No waisting time while you zip around looking at the sites. First tour is at 8am and we only got home at 4pm ...NO LUNCH! But we loved it, it is the best way to get around. Weather was great, no wind, not too hot and to top it off, it is Eid here. There is alot of singing. This is like a Christmas so the whole country is having a 4 day public holiday.

So we haven't experienced the "true" traffic in Cairo. Even so, they manage to fit 7 vehicles in a 3 lane road. NO robots are in sight and if there are any they just flash orange. Hooting is everywhere. I don't know how it helps when everyone hoots?

Everywhere there are guys asking for "Baksheesh" which is like a tip or bribe. If you look at anyone or get them to take a pic, they will ask for money. One poor Japanese tourist really got sucked. Someone came up to him to offer to take a pic of him and his 2 small sons. Well one pic made way to about 20 with 3 more "helpers" arriving. We dashed leaving the poor guy trying to fend off the masses.

Egypt is not clean. But you feel like you are in a different time. The museum is awesome. The pyramids are a marvel. Even though it looks so basic, when you see the scale of things, you just wonder how they did it. I tell you, going through all these sites, you realize they were no fools. All of this happened 5000 years ago - amazing. What was surprising, if you look at the tombs etc, the people were really small!

I got suckered into buying. I feel post purchase depression. Well not really, I am happy with the purchases, just wish I didn't have to pay for it. We tasted hibiscus tea. It is actually quite divine. Looks like Fanta Grape! Bought some pure purfume, put our family names in hieroglyphics on papyrus and got some "golden" mugs.

So now we are just going to hide in our room and try to avoid paying anymore tips to the masses outside.

Pyramids



Standing in between the 3 pyramids. This way we can look like the largest pyramid! 2:)Here we are at the entrance to the large pyramid. We only went into the second one. 3:)You can see the scale of the pyramids to a human. I get vertigo just looking up and it has nothing to do with the anti seizure medication! 4:)At the Sphinx

Tuesday, December 9, 2008

Arrived

We have arrived in our hotel. Let me tell you that the airport at Egypt can't be compared to that of Dubai. It looks like it was built in the 60's and NOTHING has been done since then. They seem to be building a new one, so they are forgiven.

There were only 3 families that had trouble with their luggage. (well our trouble is that we don't have any! It is wondering in the air somewhere) And guess what – 2 are from South Africa. Good ol' Johannesburg! We have underwear and another top, with a few toiletries but not much else. Well you know, we like to travel light!

I do feel odd with such short hair. Its easy to travel will though. Everyone speaks to James and not me. I find this amusing because he has no idea what is going on!! He didn't make or look at any arrangements – he is just here. So in the end they have to speak to me... We saw a blond woman at the airport in a really mini skirt and high heals. It seemed really disrespectful.

The roads are crazy. It is a free for all. We were told that we are very lucky because it is time when everyone is on holiday and really quiet. Well thank goodness for that because it is mayhem out there. My head really wasn't happy being bounced around. Lately I can touch a part of my head and it feels like it is pulling the whole scar. Something like pulling on a thread. Plus with the bouncing I start to get head clicking again. It drives me nuts.

So while driving in a blazing fury with my head clicking in regular annoying intervals, we saw the pyramids! We don't know what to say about it, it is just strange to look at them. Our hotel is quite close to the pyramids and took us 45min to reach from the airport. Our tour starts at 8pm sharp for us to see them– no rest for the wicked!

PS Could someone courier me some shoes? Lets hope the insurance pays HUGH so that I can get some designer clothes in Dubai!! You never know it might arrive!!

Dubai Transit

We managed to get earlier flights – standby helps! This saved us 8hrs of sitting in airports and time to catch up with some much needed sleep. It is quite eerie at the airport. It is so quiet and large that it feels empty. I think that we are just used to the chaos at the SA airport. Plus people speak really loudly in SA. James says the airport building reminds him of a Gothic cathedral, just made in modern materials. I have to agree with him, but then again he is an architect. The place is brand new and everything is still sparkling.

We are really surprised at the amount of Asians working here. It seems as though the work force make up about 80% It is definitely very cosmopolitan. We were amused by the amount of people wearing surgical masks. They seemed to be doing this to stop viruses! We felt like we were in a series of ER. If they really want to stop bacteria, they should use gloves instead. Not that I think it is truly necessary.

The temp is 19° C 5am in the morning and in winter ... not cold in my opinion. The aircon makes up for it though – it is freezing. I think that is because the winter fashions are in and they have to make you feel cold!

I need to sleep as all of us do. The only reason I make such a big issue of it, is that when I get too tired, I have a higher chance of having a seizure. It is hard not to let that be at the back of the mind!

Monday, December 8, 2008

On the way

Well we are sitting at the airport in PE, on our way to Johannesburg. It is going to be a really long trip. We arrive in JHB at 2pm and then wait till 10:30 pm to depart to Dubai. We then wait for our connecting flight to Cairo arriving at 5pm on Tuesday! I brought my mini laptop (I am so organised) The other one is too heavy to lug around and has my docs that I don't want to loose.

We are both so excited to be heading off. We left the kids will a long itinerary of activities, so that the time will fly for them! I will keep you updated on what goes on in Egypt.

I especially want to see what food we are going to eat. It is so funny how it differs in every country. The worst I have heard is that the Australians like beetroot and put it on everything, even burgers! James says it looks like its bleeding. We have eaten strange things in every country so don't know what to expect! I always think you should try new things...

For all those going on holiday, travel safe and have a good break!

Thursday, December 4, 2008

Lets talk about it

I must say that there have been many people who have helped me deal with my situation and shown much kindness. I "met" someone who has helped me alot during the years. His wife had a blog on her tumour and it really inspired me to tell my story. I email him questions from time to time on what they went through and he has been very happy to answer. It has really helped me see things from James' side.

Dan, thanks for all and to your wife Sandy. Her blog is www.sandybeardsley.com

Alot of people think that modern communication is terrible because there isn't face to face communication. I disagree. I think it is great. I have the whole world to find people who are struggling like I am.

Well my kids are fighting so I better get back to the front lines!!
d:)

Don't speak too soon

I definitely spoke too soon. Yesterday the "bug" hit me. So now the whole family has had it. It lasted about 12 hours and now I feel alright. I said to James that I really hope this is not what chemo is going to do to me. Plus we are off to Egypt and the bug is there too.

My stomach muscles had a real work out yesterday. At least they will be firming up a bit!! Great ad for "Ab master pro"

I have to go to the GP to get antibiotic to take to Egypt. I hate going there... the queues are always long and the doctor is NEVER on time. So I decided I am just going to haul all the kids at the same time. This way I can check that they are clear before we go. I know he is just going to give us 5 minutes and a heap of medication... You may notice that I really don't like him. He did mis-diagnose me for almost 3 years! I remember the final straw for me was being told I was just stressed. I tried to change GPs then but my medical aid was sticky. At least I can now.

I went to another GP when mine was on leave. (much prefer him but now he is on leave) He became super interested in giving me time when he heard I had a brain tumour. Probably because he is "sick" of people having a cold! He could finally do some "brain" activity. I don't blame him...

Wednesday, December 3, 2008

Pirates

I really laughed this morning ... they were chatting about a cruise ship that ventured to the coast of Senegal. They have pirates in Senegal. YES they do, and anyone who lives in Africa knows these things exist.

So... the cruise ship start heading towards the coast. The pirate ship heads their way. Now because there are mostly old people on a cruise ship, could they not see the cannons and AK47s coming towards them? Or was it adventure sports on the sea? Maybe reality TV from 1786 ad?

Anyway, do you think they were sipping cocktails while watching the sunset and mass of pirate ships!! (the ship is fine by the way)

Tuesday, December 2, 2008

Eating

I am attempting to eat more and healthily in preparation to start chemo and radiation in 26 days! It is seriously hard, I love chocolate and tea. (not together) I am an addict. Why does healthy food taste so bad? Those veggie smoothies are not for me. (Especially when they are green) Some people say they loose weight during chemo from healthy eating! Some have told me that their taste buds change completely. It is like the body tells you what it needs to heal.

Since my operation, my skin has been incredibly dry. I think it is weeks of using antiseptic on my skin and scalp. I am taking some vitamins to try to get my oils up.

I met a woman, this weekend, who has had a breast removed due to cancer. She has a very positive attitude and advised me to eat as much good food as possible. She went through full treatment, operation & radiation. After a year of treatment she is now cancer free.

How is this... her mom has a low grade brain tumour! She has had it for 15 years. She is 65 now. It is really nice to hear some positive news of brain tumour survivors. It is scary that people die from it. It truly amazes me, that when you are open about your condition, how many people tell you what they are going through. Perhaps it is about getting older that it becomes a reality of life.

I believe in being completely honest. It is too much of a burden to hide. People know anyway. Sometimes this does mean that you are shunned. Generally they are scared or they think, in some bizarre way, they will get it. I was always afraid that people would think less of me. I didn't want to talk about it for 2 years.

So what did I do? Publish it on the internet... Mmm it must have affected my mind.

I am working on mentally preparing for chemo and radiation and loosing my hair (again). At least it won't be all of it. I am not sure what I am going to do with the Goth patch look? Any ideas?

Monday, December 1, 2008

The Bug

This weekend, my entire family got a bug and subsequently spent their days vomiting. I asked Adam this am how he is feeling and he said he just had a little bit of cholera! (He meant diarrhea) I on the other had am fine?? How does that happen? I think it has to do with all the berries I have been eating.

Poor James has become the in house medic. He is looking a bit tired... I think the holiday is going to be much appreciated.

Now they say that it is almost certain you will catch a bug in Egypt. Hopefully I will maintain a stomach of steel.

PS... I am touching wood with one hand, the whole time I am writing.

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.

Wednesday, October 29, 2008

Treatment plan (again)

Went to see the doc and he showed me the treatment plan for next week. Probably starting on Tuesday / Thursday. It is amazing, he showed us the comparison before and after surgery. I can't believe how big it was. The amount of brain that was being squashed was unthinkable. So I wasn't pretending! He said that it looks like the high grade has been removed par for a very small amount around the edge. Whats left is all low grade. Shew!

Chatting about side effects is always "fun". Oh yay can I go through that please...
Then as we were leaving, he tells us about this new machine, they are getting next year, which will probably be better for radiation... Now because it is low grade, I could wait for it or try stop grown and go for it now. Remember that you can only do radiation once in your life! ANYWAY, we going to chat to him about this as an option...

Ignoring that little fact, I will probably start next week. I just love the way everything has been so clear! I am sure that you must think I am making all of this up for "entertainment" value!
d:)

Tuesday, October 28, 2008

Achieve your goals by 20

I was so inspired last night. I went to Anastasia's end of year function. They kids did various speeches. They were funny and motivational. They are so eager to take on the world and life. But the real inspiration for me was to meet a Para-Olympic. He is a young man (about 17 I think) He won a gold at the Olympics. I can't even attempt to swim as fast a he can and I still have all my limbs. (ok beating me in swimming is a given)

I realised listening to him, we all do have inner strength to achieve. We need to "tap" into it. I struggle sometimes when I think of the "stats" and "prognosis" of my tumour. Prayer and the energy and strength that is given by God makes it easier.
Oh, alot of the kids wanted to BE RICH, they would also meet most of their goals by 20. You go then...

Monday, October 27, 2008

Ramp model

Before I went into surgery, I have to admit that I did consider a little "nip tuck" You know 3 kids don't exactly do much for the stomach or boobs! Now there is NO way I will do it. Besides the fact that I never want to go under the knife again, it seems so futile. After I came out of surgery I was really happy to be "in tacked" It is such an accomplishment to have got through. I realised it is the same with our bodies. They are all battle scars and we should be proud of them.

It is hard to handle as our society is very materialistic. We also battle with our inner self to live up to these standards. I have to admit I have always wanted to be a ramp model. I try to ignore the current state of my body, that I am shy and the fact that I am about 2 metres too short - I can do it!

Friday, October 24, 2008

More information

So it seems like I spoke too soon on my last blog! Dr Dupper called yesterday, he said that the last scan was a planning scan and not a diagnostic scan. This in English means that I am not going to get all the information I was hoping for... What we did discuss, is that I am starting radiation and chemo next week

Some information
The big block "hole" in the last scan picture is the part where they took out tumour
The remaining lighter white border area is tumour (he thinks low grade)
They are going to radiate the original area (before op) as well as an extended border
These tumours run like tentacles through your nervous system (once again layman version)
Therefore you can never remove all of them because they run too deep into the brain.
Chemo will be half dose for 6 weeks and full dose after that for 6 months

The doctors all agree that this type of tumour needs the most aggressive treatment
So not very good news. Maybe this is making my right brain more creative? Next I am going to be writing music... Don't worry I am not planning to cut off my ear! (Only part of my brain)

Thursday, October 23, 2008

Stand in the queue

I can't tell you how frustrating it is to sit and wait for an answer WRT my treatment and what the results are of the operation (ie how much was removed, how much remains, grade etc) Perhaps the fact that there is no rush is a good thing. The waiting is driving me crazy. You are at the mercy of the doctors, feels like you are standing in a really long queue (like Woolworths on a Sunday morning)You just can't plan your life. In the meantime I am getting bigger... I hope they don't take too long to get back to me.

It is really hard to concentrate at work. Luckily I am not under too much pressure. I hada real laugh on the weekend, we were watching a South African spoof movie. There was one scene where they have "speed dating" but instead of trying to find a date, there is a long row of "BEE" partners, you have 2 minutes to move from one to the other!

Wednesday, October 22, 2008

Brain Hole 2

Yesterday I found that I actually had another "brain hole". I also discovered that it actually has a name "burr hole" I wasn't too far off. It is in my crown and that area has been too sensitive for me up to now. As you can see in the image, they make 2 holes (in my case) and then use a machine that twists between the 2 holes creating a circle. They then take the brain flap off. When the op is finished they put the flap back on. Hopefully the holes grow closed again (James assures me they will)

Tuesday, October 21, 2008

Waiting

I haven't written in my blog for 2 days ... I just don't know what to say. I am just sitting here waiting for some news. Life carries on...
You will all be happy to know that I have been eating up a storm. Hoping, of course, that I will loose it again once treatment starts! James says he doesn't mind "chubby whubby" How nice - I could smack him or course.

Yesterday I had to admit that I have cancer. Don't we all hate that word? It must be on the top ten. Thinking about it is so scary. Even though my tumour is benign, by virtue of it being in the brain, they have to treat it as such. It still invades healthy tissue because it has nowhere to go. It can, of course, turn malignant and then invades at a very high rate

I am so excited about my art. I went for life drawing last night and I suck. (I am NOT joking) I think wild is more my style. James refers to it as "steroids".
People ask me if I think the tumour has brought out the right "creative" side of my brain - I have no idea. The left still seems to be working? It is nice to think that is has had some benefits!
Yesterday I was on the radio and newspaper - seems like I am a short haired celebrity. People love a story. I have been so happy that people, going through similar experiences, have benefited from my site. I have had a few people speak, call or email. It makes me feel great and make it worthwhile. It makes me feel less isolated.

Saturday, October 18, 2008

How am I feeling?

When people see me, the first thing they usually ask is "How are you feeling?" I am not afraid to be honest. I remember that when my Gran died of cancer, she never really told us how she was. I was quite upset. Getting the answer "fine" was really irritating. Since I have been going through this, I have realised that most of the time I am fine. For some reason, people think you shouldn't be or just don't believe you.

So how am I? Physically, my head still hurts and the bone hasn't fused yet. It does the clicking thing. Thats frustrating because I can't sleep on that side yet. Emotionally, I am worried about chemo and radiation. I am not happy to go through it. I think half of the problem is that I don't know what to expect. You hear horror stories of what people experience. It is a shock to be "sick" enough to have to go for chemo. It is really difficult not to feel like "Damaged Goods" I sometimes feel very shy.

No sympathy or pity. I think that is the worst. I have been chatting to some people who are going through much worse and realise that they feel so isolated. The best is to treat a person as normal. We don't want to be reminded all the time! We haven't changed.

This is not supposed to be depressive. I just think it is important that people know how it feels to go through it. I am really blessed to have the friends and family I have. My blog has been an outlet and I am able to show that not all is doom and gloom! We still want to like our life to the full, even with our health challenges! But by all means ask how I am!

Friday, October 17, 2008

Hospital Outfits

Who designed the hospital out fits? They make your boobs look like they hang a meter lower. The colours are bad, bright white makes you look like death. (Why encourage it?) Then there are the blue ones which are made of a weird texture. It is freezing in the wards, everything is cement, and they give you a thin outfit. Hypothermia here I come...
I have seen very interesting buts. Some of them you really don't want to see. It doesn't matter if you are a super model, you are guaranteed to look hideous (Leo's word)

Thursday, October 16, 2008

The mask




OK - Don't hold me to it... I got the scans on CD from the radiologist. I haven't been to see the doctor so that he can explain it (curious George you know). It is been sent to the "panel" of docs in Cape Town again for them to decide on the best treatment (dose etc) as when as the location of the radiation beams. They said that there will still be swelling which may make the scans seem worse than what it is. I have put brief explanations next to scans (Like I said I am guessing)



I had a mask built, MRI and CT scans. The mask is very strange. They put this plastic type thing over your head while you are flat on your back. It is quite hot and flexible. It then covers up your face but they leave a gap over your nose (I haven't been able to hold my breath for 10 minutes yet!) Your eyes are closed and as it dries it hardens. They then "unclip" it. James says I could pass for Hannibal!



The MRI & CT scan is simple. They take about 10min and 5 min respectively. I had the mask on for both. The MRI is VERY loud and makes a lot of different types of noises. (Banging, beeping, etc) The CT seems to have alot of lazer & heat. It is FREEZING in there. I was blue (plus I didn't shave my legs so my hair was standing up about a meter high!!)

Tuesday, October 14, 2008

The ball is rolling

Ok the ball is rolling! My doctor says to me that when the ball comes towards you, then you bat. So its time I start batting. (never been good at sport)

I am booked to go for my MRI, CT and mask construction on Thursday. I will post pictures of the scans. I am quite curious to see what is there. The doctor says I mustn't be disappointed, there will still be alot of swelling and it looks like there is still tumour left. He will explain this to me when I see him. The whole process will take about 3 hours.

The doctors then build the target areas on the mask using the MRI and CT scans. (very layman explanation) This takes a few days..
I am not sure when I will start chemo & radiation, I think as early as next week. Well my feelings on this is that I have to get it done now. I am scared. To be honest, I really don't want to have to go through this. The radiation will burn my head in the area where they radiate (like a sunburn.) So I will have to protect it from sun etc.
Well will keep you posted... I am very excited and nervous about the exhibition tomorrow.
d:)

Professional Napster

No don't think of the hacker types... I am talking about professionally sleeping in short patches. (Almost like being a controlled narcoleptic) I have a little routine... grab a bar of chocolate, tea or juice, a biscuit. Spread everything on the bed for easy access. This will help you feel ill and full and force sleep. I like to put a black mask on. Make sure you have a blanket – in case you get cold. There is nothing more irritating than having to get up. If you have ear plugs, use them! Especially if you are a mom.


When James gets home, he knows I haven't been napping if my eyes don't look like golf balls and I don't have chocolate wrappings over the bed. I know I am supposed to be healthy, but hell, having berries all over the bed just doesn't have the same impact! (I definitely won't try fish!)
d:)

Monday, October 13, 2008

The skull

This weekend was quite productive, finished my paintings.

I tell you driving around is tiring! I forgot... Now that I am a "Soccer Mom" I have to try to remember when to pick everyone up! I have to get used to driving a massive car. I have very short hair and legs, so it looks like a skull is driving - ignore the pun (or there is no driver at all) )
The car is so huge it has a step for me to get in (thank goodness) Plus I have to remember to put petrol in! No news from Doc yet, I'm happy about that, don't feel like dealing with it today!

Friday, October 10, 2008

The plan

Well it might change, but after the discussion yesterday, it seems like most of the specialists have come to a consensus. There are apparently a few cells that are grade 3. This requires active treatment before they are at risk of turning into grade 4.

I will go on 6 weeks radiation starting as soon as there is approval from the medical aid.
The medical aid has given me allocation per year which should cover it. Luckily they renew every year which means that if I need more, I can apply again next year.
  • Once radiation is approved, they will do an MRI scan as well as a CT scan. This should happen next week (depending on availability)
  • They will then measure the area remaining, analyse. They give more radiation in the remaining area and measure the original "bed" of the tumour and a lower dose in that area.
  • To do this they build a mask that I will put over my head that will focus the radiation into the affected area.
  • They are giving me a medium sized dose.
  • I will go for radiation Monday - Friday.
  • They radiate for about 10 minutes. I will probably go in the afternoon so that I can come home and sleep / rest.
  • Half dosage chemo will be given during radiation. This is in the form of pills. This means that the "poison" is gradual.
  • I am going to get full dose chemo for the next 6 months. This will also be pills. (much longer than I expected)
  • Side effects:
  • Radiation will cause nausea, fatigue and hair loss in the area where they radiate. There is a risk that the area they radiate will cause permanent hair loss
  • Chemo will cause nausea, fatigue and perhaps vomiting. It seems to be quite mild compared to conventional chemo
  • My life will continue as normal - well as normal as can be expected! You can't stop living!
  • The only disappointment (besides having a brain tumour!) is that I definitely won't be able to make my Egypt holiday :(
  • Otherwise, I went to the Surgeon today (local one Dr Morkel) and he checked my scar etc and said I am looking good and it is healing quickly.

Tuesday, October 7, 2008

Next steps

Ok now I am P'd Off. It seems like one bit of good news has to be followed by bad. This afternoon, the doc phones and says the "committee" suggest that I start chemo and radiation soon. (Like in 2 - 3 weeks) They are worried about the possibility it might be grade 3. He also says that I will have 6 weeks radiation for 5 days per week and then 6 months of chemo ...Well I have to meet him again this week as well as the local surgeon

Friday, October 3, 2008

Oncologist

Ok been to see the Oncologist. It is very strange to walk into a chemo ward. Not scary, just surreal. Well after one hour of paperwork and another hour of consultation, we seemed to understand a bit better.

I have to do chemo and radiation. The two seem to compliment each other and increase the chances of success. You can only do radiation once in your lifetime, so there is also the question of when is the right time. If the tumour gets more aggressive, you won't be able to do that in the future.

What was disturbing is that the tumour might be an oglioastrocyoma. Astrocytoma's are more aggressive. They have also graded it as a Grade 2 - 3, Grade 4 is the highest and very dangerous.

James is now wanting to tackle this "head on" (so to speak!) He is not happy with the news. Surprisingly, I am coping alright, I am not happy, but I realise that we need to do what must be done and stressing is not going to help. They keep offering me counsellors if I need one.

Thursday, October 2, 2008

Black out info

I have a big post missing from September - October. This is because my server crashed. I am hoping at some point to have it "come back"

Basically what happened was, I found out that I had a grade 2 - 3 Oligoastrocytoma. I need to go for chemo and radiation. Alot of the grade 3 tumour was removed.

Monday, September 8, 2008

Crouching Tiger - Hidden Dragon

This weekend an armed robbery occurred at Wetherly’s. One of my family members, Bron McMahon, was conducting a normal female activity - shopping!

Bron was innocently wondering around the shopping centre upstairs. She got two steps down the stairs and noticed a scared look on the managers face while he dived over the counter! Seeing this, Bron crawled across the floor (hence called "Crouching Tiger") till she found the nearest bed! She hid under the bed ("Hidden Dragon") Now Bron does NOT got to gym, but managed to move and spin at the speed of Bruce Lee.

There were 5 robbers, Bron only saw 3 (which is enough in my mind) The rest of the shoppers were robbed of everything - jewellery, handbags, cell phones, money and credit cards. While the shop was robbed of all cash. This is Johannesburg for you. How lovely. What concerns me is that we can't even shop anymore - that is a direct hit on women, how are we going to do retail therapy?

Jokes aside, this is serious. It is unacceptable that we live like this. Bron, however, is just grateful that she was safe, she has looked on the bright side and has even made most of the jokes I have written down (including the name) I think it is time we are a little more careful. Bron wants everyone to know she is fine.

Now, as an expert in marshal arts, she is opening "Duck Dive & Slide" lessons to all keep shoppers!!

Well done Bron!!
d:)

Friday, September 5, 2008

Going home


Our last day at the flat

Back to coffee

We went to see Dr Butler today to have a general chat. He is happy with the progress. He said that the tumour would have eventually done to me what the 1st operation did and sooner than later. Wow that was scary. There are still tumour cells left around the speech area which is a concern. They seemed to have found the "spikes" in my brain around the tumour that was causing the seizures. They managed to take them out so hopefully that means the seizures will stop. At the end of the year, they are going to re-look me going off medication and my ability to drive.

For now I am feeling good, the op went well and we can make more plans for the future. I have a few months to recover and when we get all the other reports we can decide what needs to be done. We went out for coffee today! I am getting better. Still feel a bit awkward about the bruises and the beanie.

OH I finally slept last night. It feels ridiculous to have this as such a concern. I felt like my head was really thick and lay down and passed out. YAY

Thursday, September 4, 2008







James says I am in so much trouble for the Bozalina blog!!
Today went well and it has been such a relief. We took a walk to the hospital and I went to have my stiches out. Everything seems fine and he is happy with my progress. My swelling is also coming down well. Last night I resorted to taking a sleeping tablet. My head was feeling quite full and irritated. I managed to sleep for about 6 hrs.
The doc said that I shouldn't worry about it, I need to get into my body rhythm again. He told James & I to go out to Nordhoek, take a walk and go to a little casual restaurant for lunch. SO we did!! I had to build up the courage but I did it. It felt good to get out (even if I feel like a bit of a freak) Luckily not too many people got to see me. The brused eye is the biggest problem.
I was feeling pretty washed out and had an hour nap this afternoon.
I was reading through all the previous blogs. Oh my word ... have I really put up all those nasty pictures of myself?? I must have had something wrong with my brain. Now everyone has seen me in the worst view ever!!! Delete delete... It was pretty interesting reading it myself to see what the last 3 weeks has been like from an outsiders point of view. With me feeling so good it is almost like "what was the fuss all about"
Bozi and I are going to watch a DVD now... Sham my poor Smookel Berry (Oh I am in real trouble)

Mini Brain

You won't believe it, or maybe you will... I am starting to realise that "normal", is definitely NOT a good description of me.
The doc called today and said that the lab has no idea what the tumour is!! So they are sending it to JHB to some top professor to try figure it out!! Firstly I had to laugh at this... really. BUT good news is that he says they are pretty sure that it is NOT malignant. We are trusting this because it doesn't seem to meet the cell structure required to be that.
So doing more analysis, like I do, I have come to a few conclusions:
The person working in the lab didn't do that well during the brain tumour lesson
They haven't done it and are waiting for time
They have taken out the sleep area of my brain and don't want to tell me
My body decided to create 2 brains just in case, except that Mini Me brain is tapping Big Me brain and irritating it. (maybe this is why it is my pet hate??)
No I haven't slept yet! Um seriously. Maybe total of 3 hours in 24? Although I REALLY don't look good, I am feeling good and almost my normal (or not normal) self. I am amazed
We are seeing doc tomorrow for a check up and have the stiches removed. I asked him again how much he thinks he removed. He says he removed as much as he could see, but explained to me that the brain moves all the time while they are operating. He can't give me a percentage but felt it was alot. He has to delicately keep following the tumour without touching normal cells. WOW I really have admiration for this guy. His hands are perfectly steady and he can remain still for the entire operation. (6 hrs)
The MRI scan will only be done in about 6 weeks. The doctor says that my brain needs to settle down into place. Then we should have an idea of how much was taken out / left. We should have the lab results at the same time...
I still don't know what this whole tumour is going to mean for me in the future. We won't be counting our chickens before they hatch. I am happy (except for hair) that I have done it. I feel that the weight has literally been lifted. I can improve my life for the time being. It has made us realise the important things in our life. What a bizarre way to have to find them out!

Bozalina

Anyone who knows James will understand Andrea's comment on him eating chocolate cake for breakfast! That is so true. It amazes me. He has no health problems and breaks all the rules! Plus he has that ability to sit completely still for hours. He must be conserving his cell structure.
I have been making sure that I eat properly. Sometimes I am so hungry that it surprises me and other times I have to remind myself that I must eat something. I have lost about 2 kgs through this. I don't like the way it looks as it is mostly muscle. My iron is very low so I have been put on supplements.

The nurse came up to me and said "you are very white" Duh.

It is so great being married. I am also one of the lucky ones to have the man I do. You have someone with you, it makes me understand more and more why we need it in our lives. When you see the older people in the hospital without anyone, it is heart breaking. Obviously this experience has left me a long time to think of the bigger picture.

James will probably kick me for telling you this... I love to make up nick names for him. And not normal ones, I rotate them depending on my mood and inspiration. The latest name I have been calling him is "Bozalina" It is derived from Bozo the clown and my maltise poodle that I named "Fluffylina" He doesn't feel it is very manly.

Anyway, this came in handy. When they woke me up after the surgery, the first thing James asked was "Whats my name" (how unfair is that) so I said "James". Then he said "what's my other name" and of course it was "Bozalina" Anyone who knows James will understand Andrea's comment on him eating chocolate cake for breakfast! That is so true. It amazes me. He has no health problems and breaks all the rules! Plus he has that ability to sit completely still for hours. He must be conserving his cell structure.

Wednesday, September 3, 2008

Still trying to sleep

I got to say, it is so great to open up my PC and get all your messages!!
I have never had as little to do as I have today. It is the most bizarre feeling. Its strange waking up, bathing and thats the end of anything I need to do for the day!! I really have to pace myself!
I was chatting to my Gran yesterday and she said that maybe the weird sleep disturbance is from the anaesthetic. So I started thinking about it and I think I was having panic attacks. I have had 3 surgeries and been woken up afterwards. The last one was an awake surgery. I am also not sure how many times they woke me in those 6 hours. So I am probably having flash backs. Perhaps my body was starting to do it on its own when I would fall asleep. When every I would wake up it felt like I was struggling to breathe or being hit. Of course I like to analyse everything, so this has made me feel calmer.
So although sleep wasn't great last night, I didn't have any of that. I really had a talking to myself and tried calming exercises. Also not having any hospital background noise has probably helped. Knowing James is next to me is great.
It is quite hard to fall asleep when you can't put your head anywhere...

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:)




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