Thursday, April 30, 2009

3 down

Well I have swallowed 9 HORRIBLE little pills and have 6 to go... Only 2 more nights left - YAY If anyone has serious diarrhoea use Zofran - IT WORKS. So well that nothing works. This idea of taking a couple of laxatives in the morning is stretching... Last night I took half a tablet of Zofran and fortunately I still feel fine today. I think that the 2 previous days of Zofran are still doing the job. I am really scared not to take a tablet because I wouldn't like that 3 hour throw up episode again. But so far - all is good.

I was also taking these detox tablets, which I stopped 3 weeks again. I honestly think that I feel better because they aren't interfering with the chemo tablets. (ie being toxic is better than not) I have done a few things differently this time around. Like I said I cut out detox stuff, I only have 3 vitamin tablets now - Vitamin E, Mixed, Omega 3. I have not always taken my full dose of anti-seizure medication. I take 2/3. I think this has all helped my body to cope with the chemo.

I try cut my sugar down - BUT - I have been craving SCONES - seriously. With apricot jam and thick cream. It was so bad the other day, James told me to get up and go to the shop. Sometimes I substitute this for donuts (which Leo calls a Go-nuts) I am also trying to cut down dairy intake because I am lactose intolerant. This is also hard because I really enjoy cheese. I bought soya milk the other day and my tea didn't taste good!

There is no way I can radically change my diet. We all watch these TV shows where obese people loose huge quantities of weight and then pick it up again. I have always believed that you can eat / drink anything as long it is in moderation and according to your needs. What I have done is eat alot more fruit and salads. I can't face cooked vegetables (my kids are happy) I don't stop myself from enjoying things, I do see if I can substitute it first. I feel that I eat well and I am well aware of building up my strength and keeping my fluids high. Last week I had a couple of glasses of wine. It was good to enjoy eating, drinking and being festive with friends. Its one of the small pleasures of life and I am certainly not going to let this tumour stop that.

Boziface

I have decided that James needs a new nickname. No I am not doing this in an effort to confuse myself, merely trying to keep up with the latest trends. As alot of you know I call him Bozalina. He doesn't think that it is manly because I got inspiration for the name from my miniature maltese poodle fluffalina.

I have decided that Boziface is a good one. It also has a manly edge. I called him it last night and he responded well and it was easy off the tongue. The face bit comes from "pokerface" and I have kept a bit of the old. So cheers to a new era with me and Boziface. All in good fun! :)

Wednesday, April 29, 2009

Retail therapy

No, I didn't have a personal chat to the loo last night - YAY. It is quite distressing watching your body disintegrate into cellulite. I can feel the flab all over my legs and it is not attractive. It is amazing how, within a day or 2, you can notice the effects chemo has on your body. Small little spots appear, your skin dries out ... blah blah blah

But to top it -drum roll - I started getting my infamous FLU! Yes Please! So last night I woke up to blow my nose one billion times. (Is there a Guinness record I can enter) Luckily Leo didn't let me sleep in this morning - or I wouldn't have been writing this right now :)

Anastasia & I went for some retail therapy yesterday - She was exhausted after our shopping and waiting in queues. I have to say "The bank - Aish - She is slow" - TIA (You have to be South African to understand that saying) Some little lady said it was faster when they did it by hand.

Our neighbour is from the US on business with GM. They are staying here for about 2 years. She attempted to go to the bank. I warned her against the perials associated with actually walking in there. My suggestion is to somehow find a number that is not a call centre and phone that person - arrange delivery or something

At least I know that when I am finished waiting in the chemo queue, I can go back to normal. It is as slow and frustrating as working in Africa. However, with the breaks, I notice my body improving. My hair continues to grow back and although my memory is a bit shot - I can remember my name! (And I still call my husband's name at night) So things are getting there slowly. (TIA) And this time I must make sure I have a direct line to the Creator so that I don't have to wait for a response!

Tuesday, April 28, 2009

No problems

Last night I took my chemo tablets after I had taken the Zofran earlier. I didn't get sick (bonus) My doctor told me to just take the Zofran in the evening and a laxative in the morning. Wohoo! Its like killing your battery every night and jump starting it in the morning.

My sleep was very broken. I have been having these strange memory recalls. Things I didn't remember are now coming back to me in flashes. Its odd. I have no emotional attachment to these memories, so they don't scare or upset me.

Today at 12, I was completely snapped (our slang for tired) I had a 45min nap but compared to my normal needs, wasn't enough. I did feel nauseas this afternoon. I had a smoke (don't tell anyone) It helped with the sickness and woke me up a bit. So now I am cooking for the family.

Other than that, all seems to be on track! Yay - Grin and bare it

Monday, April 27, 2009

Angry about chemo

Last night I felt so incredibly angry. So needless to say my sleep was broken. I think that knowing I have to take the chemo tablets again today, coupled with the fact that I have felt good this past week, made me resent what is to come. Luckily today is a public holiday so I didn't have to get up early.

I know that I will see it through but I feel like I am doing it kicking and screaming like a wild horse that won't learn. Plus this feeling of anger/frustration - whatever - seems to hit me out of nowhere with a massive punch. This morning I feel ok again. I also know that I can stop at anytime - its my choice - I am not sure if this is a good thing to know.

I still have these huge bouts of tiredness. I can be feeling fine and then suddenly, its like my body goes into shutdown. On Saturday I slept for 3 1/2 hours and still went to bed the normal time. (It did feel good)It is actually amazing what I can sleep through - the plumber was banging in the ceiling because the geyser blew, kids were playing, Leo was shouting, TV on - and I slept!

I am not sure why I fight so much with it. I still think it is because I don't believe this thing will kill me so all of this effort feels petty (Its hard to explain really) I also refuse to believe that I am anything but normal... as you all know! I do suffer from memory loss - but I can't remember what I have forgotten so it doesn't really matter! :)

I have decided that this year I am going to make it more about me - getting better and discovering what is important to me. I am not going to pretend that I can do everything I used to (or even that I want to do them) I have help and I am going to use it. It is time to look at my life and ask where am I meant to be. I am so blessed to have so many family and friends supporting me. My life seems to be moving in a totally different direction and I think that I should stop fighting the tide. I believe we get lessons in our life and if we don't learn from them, we get to take the class again. I don't want to go back to brain tumour class - thank you very much.

I am a person who enjoys logic & order. I don't like vague answers (which seems to be a doctors favourite trick) I might get upset, but I would rather know what to expect. So I have always wished that God could send me little answer boxes from the sky. (Not that I would always want to know the answer) This would give me a clear course ...So if my little box arrives at your house - please be sure to let me know. Until then, I will have to figure it out myself :)

Friday, April 24, 2009

Grandad

My Grandfather went for a MRI yesterday. He has suffered from headaches for years and they seem to be worse lately. We were all curious to see the cause. He has a few spots that they think are just degeneration due to ageing. If the spots occured in a young person then it would be a problem. Personally I think that it is due to swelling. He is as astute and fit as ever. The spots (in my unprofessional opinion) seem to be outside the brain along the frontal lobe.

It was very interesting to have a look and compare with mine. I have always felt that my (ex) tumour could be genetic as well as hormonal. This is because it is quite common to have a degenerate 1p & 19q chromosome in oligodendrogliomas. My Grandfather remembers the day this headaches started when he was 40. This could be (again my opinion) when men's testosterone levels drop.

I think my doctor may get a bit irritated by all the questions I ask and the research that I do. I am of course fighting for my life. I look at what my body is going through and feel that all of it is relevant. Doctors don't seem to agree. My tumour problems definitely came about during my pregnancies. I also feel that the stomach problems I have are linked. I have spoken to a few people who have had a tumour and they say they experienced pain in the abdomen and that is why the focus was not on the brain.

I personally think that doctors should be able to at least look at illness holistically, I do believe our bodies talk to us and we should listen.

Needless to say, I feel my Grandfather needs to be able to get rid of the headaches and the doctors should somehow help to at least stop the headaches. At least he is fine, we don't need two brain tumours in the family!

Thursday, April 23, 2009

Voting

Well I did my duty yesterday... it felt good. I stayed up as long as I possibly could last night, waiting for some results. But by 10:30pm there were none! So this morning I rushed to turn on the TV only to see that Zuma seems to be doing well. Well the one upside is that DA seems to have Western Cape and has really got a much bigger support base in Gauteng. It is still too early to tell as they have only counted 25% of the votes so far.

Everything was very peaceful. The ONLY recorded incident of violence in the country was in PE - it was my nanny's neighbour who left the ANC to join COPE. It seems to have been an assassination. She was quite upset this morning. It seemed to me that there was an eagerness to vote by most South Africans. They say about 80% of eligible people voted.

Having these extra "chemo free" days has been wonderful. I discussed with my doctor and he said that I can take the next round (the one after next week) after James' birthday. This way I can feel my best. At least I can negotiate with the guy. Basically I will have 5 days of chemo once a month.

Tuesday, April 21, 2009

Good news!

Well today I went for my check up before I start the next round of chemo - and I got GOOD news! Well as good as it gets for chemo I suppose. They are going to extend my break to 1 week on, 3 weeks off! YAY. Its because I just don't seem to be getting over the flu. I am also excessively tired. This will make my time off longer but extend my treatment time. I think its better for me to have a better quality of life during this time.

The lady administering the pills asked me if she shouldn't keep them till next week in case I take them by accident this week. I assured here that there is NO way I will take them by accident and she is not to worry! (Duh)

The other good news I got is that I have been commissioned to do 4 very large paintings for a new office block. There will be one on each floor. Its very exciting to have a little project! I went to go look yesterday and I now need to come up with a concept / theme

I am just feeling alot more positive that I can be a bit more productive during this time! Oh and tomorrow is voting day - NOW I am really hoping that things will turn out alright. As us South Africans know, Zuma is not exactly what I would call a model president. Bearing in mind his 700 criminal charges, his polygamy, he is Zulu and that he only has a grade 5 education... Well lets see how that goes! As long as he doesn't get 66% majority, we should be alright!

Friday, April 17, 2009

Hair growing









I am being very brave here...

My hair has been growing bit by bit from 6 weeks after the radiation. I had no idea that it would happen so quickly. It is just growing in patches and I think the area where they did the booster is going to take a while. The other day, a young cousin, staying with us, was talking about scars. He firstly didn't realise that I had a wig on and secondly didn't expect me to whip it off! It was very funny to watch his expression. I showed him a real scar!

I did a number 2 (very very badly) on my right side of my head because the hair was growing too fast. So that side looks relatively normal. Then on the left side, I have patches that are growing. The areas growing a still a bit thin and soft but definitely there! That bit gets really cold at night. You will also notice how much the scar has healed. It runs into the hair line and you can't see it at all.

Thursday, April 16, 2009

Art Article

I was very honoured to have an article of my life and art in the People Talk magazine. It is 2 pages long. Yes the picture of James & I is pre-no-hair! But don't worry will get there again! You will see that James took an ad on page 2 and that is one of the buildings they are completing. (I know I am biased but I think it looks great)



Toxicity

The second half of this week has been good. Last night I went out for supper with friends, tonight friends came with supper and tomorrow we are going out again with more friends. It is good to catch up you guys.

Next week it is back to chemo. I have decided that I will not take a tablet until I have had a toxicity test. This is because I have been on anti seizure medication for 3 years and they have never checked my toxicity levels. Basically your levels build up over the years. Adding chemo to the mix puts alot of presure on the liver. If my toxicity levels are too high, it causes symptoms like dizziness, fainting etc - almost like having some sort of seizure. I have been a bit worried because I seem to have this, but then it could just be the flu... I would rather be safe.

Of course I am not sure if my doctor will listen! I don't want to complain all the time, it is just not someone I like. I have admitted defeat when it comes to doing the chemo - BUT it doesn't mean I want to do it. Call me a wild horse if you want!

Tuesday, April 14, 2009

I want my life back

This past 10 days have been a bit rough with the flu. I seem to be getting out of it slowly. Its hellava frustrating. This is my last week "off" and then back to chemo next week. I am hoping for a few days of "feel good"

I am so incredibly frustrated being stuck at home. I go out but only seem to manage a couple of hours and then I have to go lay down. The tiredness is quite debilitating. What I really want to do is spend a night out on the town. On Sunday, I had to have 2 naps. I was so dizzy that I thought I would pass out if I didn't. I have started to notice that my memory and concentration is dwindling.

James told me a story this am... About a year or so ago, he encountered someone who had a brain tumour and was under going oxygen therapy. Well he has since died. What they have figured out is it doesn't work. So I suppose I should therefore be happy having chemo & radiation (oh yay) I know that I am moaning alot, I think it is my impatience and NEED to have this OVER. I don't believe that there is anything wrong with me which makes it even more difficult to deal with. That is why I prefer to call it a brain tumour and not cancer (still don't believe it is that)

James' gran seems to be coming out well. Andrew's baby is back at home after his heart operation. So James says to me that it is my turn to get better. (If you believe things happen in 3's)

Happy Easter





Having an easter egg hunt in our garden... We took all the kids to the fireworks on Saturday. Leo took ages to handle the noise and my the time it was over, he wanted to see more. We have Jordan staying with us too and now Leo is convinced he is the same age. Its good to not have to go to work and take it easy in the mornings...

The rise and fall of Leo

video

We happened to be taking a video and this is what happened! Don't worry he wasn't hurt much - even if it looks really serious!

Oh and Anastasia fell off her bicycle and knocked her thigh on the handle bar. She is now limping around. James has to carry her from the park (not far - don't worry)

Adam has spent 2 days sulking because he lost his rugby ball and wants us to rush out and get him one!

d:)

Thursday, April 9, 2009

Chemo Barbie

Some of you may not appreciate the joke, but James & I had a good laugh. When we first met, James used to give me Barbie nick names like "Combat Barbie" "Business Barbie" "Coffee Shop Barbie" etc etc

The other day, while I was putting on my pyjamas, I noticed that I was wearing pink pyjamas with a floral edging, a pink jersey, slippers and a dark pink bandana! I couldn't help but chirp "Don't I look a bit like "Chemo Barbie" "

I don't know if you have noticed, but in my tags, I am refering to the tumour as "ex brain tumour" d:)

Tuesday, April 7, 2009

Still sick

It really sucks to have flu on top of chemo. I went to the pharmacy to ask what I could take and they said nothing, I should go see a doctor. Well I called my doctor and he said I can have the normal flu stuff. Thank goodness because I avoid the GP at all costs. The long queues and the vague answers are too frustrating. I prefer to look on Google.

I should be in bed but I am SO tired of staying in the house that I have to keep myself busy. It doesn't last long. James moaned at me last night saying that I need to accept that I am sick and build up my strength. I am just not sure how to do that.

I am scared of what the future holds. I was watching a programme yesterday on how some people live to over 100 years old. I realised I could have done more towards reducing my stress and keeping fit and healthy. Hindsight is a terrible thing. I think anyone who gets cancer, it must come as a great shock. How and why did our bodies do this...

Some people seem to carry on as usual with chemo and I don't find that easy to do. I have a goal - that is to get my body strong again. Do some exercise and build up muscle. Of course this will have to happen after chemo.

James' cousin came for a visit yesterday, it was nice to catch up. It keeps your mind off the realities a bit.

Sunday, April 5, 2009

Happy birthday Sandra


Sandra, my good friend and my children's godmother turns 30! Hope you have a great one Sandra! Lots of love from all of us in South Africa
Click to play this Smilebox scrapbook: Sandra

Second week finished!

Yay! I now just have serious flu. Leo and I don't look too good. But hey, its all part of the process. I am SO tired of not being able to go out. It is like I am back at high school without any hair. I just have to keep counting down the days till I finish. Because, simply put it, having a brain tumour SUCKS!

Thursday, April 2, 2009

Better Thursday

Well on Tuesday night, I took a Zofran. It really did help. I managed to function as a normal human! Yay... Today I was a bit more tired and managed to sleep for 3 hours this afternoon. Luckily started moaning or I would have forgotten to fetch Adam! I am glad I am not working, I honestly don't know how I would cope with the kids, work, house and chemo.

I complained bitterly to my doctor on Wednesday. His response was a standard "I understand" Not quite sure about that. I keep worrying what this is doing to the rest of my body.

James' gran is still the same. I haven't heard any news on Andrew & Liza's son. Last we heard, he was struggling on the respirator. This year sure has been something else!

I have been extremely bad with cooking this week (not much has changed!) Tonight is pizza. I do force them to eat fruit to curb my guilt somewhat. (Anyway last night was fish!) I will have some form of cereal because it is less hectic at night. (Don't you envy me) Bon Appetite!

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