Thursday, May 28, 2009

Dietician feedback

Well I had some "different to expected" feedback... It was not too far off from what I am doing already. A surprise is that the diet won't use roughage... Yes - no insoluble fibre - only soluble (that is the "soft" food) She thinks my system has had too much pressure and needs to be treated like a baby's (in my interpretation) She has also told me to cut out greens? I am SO not complaining!

She will cut sugars but not take it out completely. This means juice (even if it is pure and only has fructose) must slow right down. Many laxitves contain alot of sugar / sweetener, so that needs to go. She said scones are ok as a snack because they don't have alot of sugar (OH THANK YOU!)

She agreed that diet / digestive issues can trigger seizures (I know I wasn't nuts)

She will increase fats. She doesn't recommend red meat (don't really eat it anyway) Small meals are in order - which I do anyway purely because I enjoy eating! She explained that at every meal your metabolism runs for 2-3 hours. This means that if you only eat once or twice a day, your body basically stands still.

Thankfully she is going to look at a plan which will involve the whole family and make the meals practical. I can tweak a few things to suit the kids and James. I told her that cooking one meal is a challenge let alone two! She recommended some "home cooking" shops that she approves of.

Tomorrow she is going to give me the diet itself. The diet should manage my current issues and assist through chemo. I will put it on the net for you to have a look. I am quite curios! I am really happy I went. I feel so much better and less guilty about the food I eat...

Wednesday, May 27, 2009

Dietician

Tomorrow morning I am going to the Dietician to see the best way to manage my problems. I am dreading the nothing "sweet in the diet" I have decided that I am going to ask her for a "real" plan that I can implement in my home for all of us to use. I really don't want to have to make 2 - 3 different types of meals. I would like it if Leo could have a better eating plan. Feeding him is so hard because he is fussy and has an incredibly sweet tooth like the rest of us.

Seeing as cooking is not my interest or passion - it is really hard to put effort in everyday. I have found a great little deli that does home type meals. I will see what the dietician has to say about that. I actually find "health" foods to be quite expensive...

James seems to breeze past health wise - I think that I am quite healthy and yet I sit with a bevy of issues. Yes I know life's not fair - so of course he has to slow down chocolate too - (well lets try at least)

The arrangements seem to be falling in place for the party. I am really looking forward to seeing everyone in their costumes! The spear was so huge I had to put the back seats down to fit it into my SUV! I felt quite safe walking along the road with my spear! (Not to mention strange) "Bionic Barbie"

Does anyone have "40th" jokes??

Tuesday, May 26, 2009

Doctor visit

Well back off to the doctor today to have my check up before I start the next round of chemo... My eosinophils are high, as usual, which means that I have alot of histamine in my system. I have been researching this and this can case serious problems ranging from stomach to intestine to others. It is caused from allergies - which I have had my entire life. The body produces too much histamine which causes swelling and can cause cell damage. There are some links to brain tumours - but I haven't researched it enough yet (believe it or not!)

My platelets are fine but have continued to drop since the beginning of chemo. Iron is a bit low - I will have to eat a bit more meat!

I spoke to my doctor and said to him that I keep going around in a constant loop of problems. He has agreed that we should get to the root of the problem. This is going to range from diet to allergies to seizures etc .I am going to see a dietician... But he did tell me (something I know) - LESS sugar... which for me means no / less CHOCOLATE - No please not that! I will also need to test my dairy...

My liver is all good! So obviously the couple of glasses of wine have had little effect. YAY! I start the chemo next Monday (after the party of course) I am only half way... Boo Hoo :(

So far I am feeling good - other than the odd bout of tiredness - all is well. The costumes for the party are going to be interesting indeed! I only have to organise the decor and then we all ready to party!

Monday, May 25, 2009

New wig

I actually don't have much to write about today... The weekend was crazy busy as usual. Kids sports keep us on our toes. We also spent time catching up with our brothers and aunts.

Anyhow, I was supposed to start my chemo today again, but because of the party this weekend I will only start next week. I honestly can't say that I am upset about it! But I still have to do the good old blood tests and doctor visits tomorrow. I am feeling like a lab monkey who has lost a bit of fight. Although I do rattle the cage a bit now and then. I am one month short of being on treatment for a year. It is terrible. James looked at me last night and he said "You are tired now, you have done well, just a bit more" He could see that it was getting to me a bit. I said to him that he will probably say that to me forever.

I want to carry on now as close to normal as possible and I think I have done well. I have a month gym membership with I will start 2nd week June. Don't worry, I have no intentions of looking like Rambo. I need a bit of yoga / pilaties. Hopefully going will motivate me to do exercise!

Anyhow, I have ordered a new wig. It should come in about 2 - 3 weeks time. Here is the pic they showed me - lets see if it is how I will end up looking! Its the closest I have to my previous hair style. My current wig is still great - but I need a new hair style - throw in some blond already! The wig feels SO normal - I forget I am wearing it. AND what an easy way to manage hair. - Just put it on. I think I will use it for a while...

Thursday, May 21, 2009

Toga Party

We are really excited about this party. I have got costumes for all of us. James is Caesar and I have got a Cleopatra, the kids have nice ones too. Alot of people are worried about what to wear. The women didn't actually wear togas. Just a long dress with rope. A toga is easy, it doesn't have to be over your whole body, just thrown over the shoulder. Put some jeans under if you feel uncomfortable. Also, you can have a toga in any colour. Its fun to get into the spirit of things.

Between James' work schedule yesterday and us forgetting his cell phone at the restaurant, he didn't get to answer many calls - but KNOW, he did get them. Thanks very much!

I was fine yesterday... YAY! My Mom asked me if I can really classified myself as "disabled". In SA (and most places) if you have epilepsy (like I have from the tumour) you are classified as such. Now although I don't get it bad like alot of people, I still have it. On Tuesday, I thought to myself that for that very reason is why I am termed "disabled" If I have a seizure, it affects my work and basically I can say goodbye to the day. If it is really serious, it can affect my performance for a week. I had to watch my speech yesterday. Not being able to talk is quite scary.

Now, as much as I don't like the word "disabled", in South Africa it has a good side. Yes, you can get better job opportunities because there are quotas of how many disabled people should be employed. As a business owner you get 'points' towards obtaining contracts. On one of the contracts, I had to laugh because they were missing some of their targets for quotas... The were looking around for "get me the guy with the hand" One of our colleagues was born with a malformed arm. It is on the left side so makes relatively no difference.

I don't feel disabled but it is nice to know that we can still and are encouraged to perform in society. I have to explain to people, what to do if I have a seizure. Alot of people are ignorant. I am ignorant - watching people have seizures scares the hell out of me. I probably would have been killed in the middle ages, thinking I was possessed. But as I have said many times before, we all have our challenges ...

I had a joke on here - it is about epilepsy, I look it off as not to offend anyone - I did find it quite amusing! Sould I put it back on?

Wednesday, May 20, 2009

Seizure

Yesterday I had a seizure. Luckily not a grand mal, but none the less, a seizure. On Monday night I was complaining of abdominal swelling and pain. Anyway, after a rushed morning, I went to the office to catch up on a few things. Within an hour, I started to feel a bit dizzy. I just ignored it. I was chatting to someone on the phone and could feel my words starting to disappear and get mixed up. I didn't know what to do when I couldn't answer, so I just slammed down the phone. Luckily I get enough warning to do something.

I walked through to James' office and he knew by the way I looked at him that I couldn't speak. I sat down and felt my ears ring really loudly, I couldn't see for a bit and then the noise went down. I still battled to speak. I would "loose" or choose the wrong word. All in all it was probably 10 - 15 minutes and then it took me recovery time.

Anyway James drove me home and I fell asleep in about 10 min and slept for nearly 2 hours (it was only 11am when I arrived at home!) By the afternoon I was feeling better, although I still had a headache. I was so upset that it had happened. It is really irritating to have your day just taken. I know what my triggers are for a seizure and I had had the abdominal pain the night before. I hadn't had any of my other triggers. So anyway I went on the internet, because I am convinced this is a trigger / aura. And what do you know? YES there is one - after 3 years of mentioning this to doctors. It is called epigastric sensation. The seizures linked with that almost pin point to me.

We I have done a whole collection of links and I am going to put it all together to take to my doctor. As I mentioned before, my body reacts in the same way all the time. I am sure it must be linked and this is important because I have a life threatening disease. Maybe I watch too many episodes of "House" because I believe that a doctor should help heal the problem and not just prescribe medication for the symptoms. Or maybe I am an "Internet Hypochondriac" - so what! I also know that I need to (reluctantly) admit that I am going through alot and I can't push myself beyond where my body can cope.

Anyway - good news. JAMES TURNS 40 TODAY... time for the "filthy fourties" (he has had some training!) Leo made us blow candles and didn't know why there was no cake. We are all looking forward to his big birthday bash next weekend. I am chatting to the DJ today to make sure we have some "old music" (80's!) It is a nice reason to celebrate!

Monday, May 18, 2009

Manic Monday

As you may have seen, I haven't been on my blog for a couple of days. Friday was hectic. Travelling, flights, meetings. By 3pm, I said that was me and waited in the lounge doing NOTHING. (Being a slob) I think I must look helpless because people are always wanting to carry stuff for me (even my Mother), fix things, open jars, make me tea ... the list goes on. Not that I mind them doing it, it just makes me think I look weak. Or maybe I look like royalty - yes I think it is that.

It felt good going there it felt like I am back to normal. It is also good for people to see that I am OK. The weekend didn't slow down at all. This morning, trying to get Leo to school was a REAL challenge. At least wrestling him was exercise for my biceps.

I haven't felt sick for awhile now. It is great. I have really taken it easy as far as eating is concerned. I am not as harsh on myself with diet and pills etc. I have cake & a glass of wine now and then. The thing that is irritating me immensely is my memory. I forget names in 30 seconds of meeting someone. I loose track of what I was saying, mid sentence. When I am seeing a client, it can be scary. I walk around with paper like a nutty professor. Yes I know people say that is normal - comes with old age. I don't think 33 is THAT old! I have to keep asking James if I have told him something before, or I just forget to tell him at all. I think that is why I have to ask him every night if he loves me... So far he has responded yes everyday (well as far as I remember!) :)

Thursday, May 14, 2009

Decide to live

Today was a success. It turned out far better than we thought. The main meeting is tomorrow, today was more of a scouting operation. My mom has been doing alot of praying and we have had many answered prayers. I have always believed that God has a plan for us and we need to trust where he is leading us.

Today I met up with a colleague that is having a cancer scare. Others are having serious health /emotional challenges. I realised that we all have issues to deal with. Before I just didn't notice them. Now I know it is what makes us human. It is not our perfections that define us, but our imperfections. People need to connect, but most of us are too scared to let others know our struggles. We think we won't fit in if we have faults. We want to look and act airbrushed - like what we see in the magazines.

Alot of young people are getting sick. Our jobs are stressful. We haven't been taught how to manage it. Men seem to, on average, manage stress a bit better than women. So many women are denying that they are females. Women's bodies work differently. We cant shut down as men can. This is not to say that men don't stress! I have always tried to balance my life. I don't, however, balance in my work. I need to look and balancing my day while at work. This means that if I am not coping, I must listen to my body. Slow down and accept adversity. We all have talents. I believe we should use them, just don't kill ourselves in the process!

I read a book "Veronica decides to die" Basically she decides to kill herself. When she survives, she is sent to a mental institution. There the doctor tells her she has a terminal illness. Hearing that, she escapes with a boyfriend to live it up in her last days. The doctor lied, he gave her a purpose to live. Dying is going to happen. Lets not wait until it gets close before we decide to live.

Very "deep" today!

Wednesday, May 13, 2009

Travel

Well I am off to JHB for a couple of days to meet a client. I haven't seen my collegues since June last year. Almost a year! My last flight up there was for a meeting. Within 3 weeks of that I was in hospital, vomitting from the pain and swelling in my head! They haven't seen the metamorphisis I have undergone over the past year. 3 brain operations, radiation and chemo. It is quite a surreal experience to go back, like a passage through time. Whenever I see people who don't know about my condition, I always feel a bit like "used goods" Well "whatever' we all have our issues. Mine just happens to be a big blob in my brain.


James & I have been to 3 art exhibitions in 5 days. I don't think my social life has every been this busy. It is good to see what others are up to. The exhibition I went to yesterday, the artist is 85 and has been painting since he was 17! His first exhibition was in 1944 - that takes us back! It is also interesting to see how his style and influence has changed over the years. It makes me realise that we go through life really quickly.

Tuesday, May 12, 2009

Hair

My hair continues to grow. The pics on the left were taken in April and then pics on the rights taken now in May. It is very funny because the new hair feels soft like babies hair. The bit above my scar and the area around my neck is basically fully grown. I just wish it could be quicker! It is not bad considering I finished radiation 11 weeks ago - just short of 3 months. I have ordered another wig. Tired of the old style! I am going back to blond! - Yes I am. Can't wait. I have decided that it would probably take another six months to a year to get a decent head of hair, so I might as well look good now! Ironically, my oncologist was very happy when I got a wig. He seems to think we should wear one to feel more confident (well at least this is the impression I got from him) I am also going to donate my wigs to the cancer foundation or to other women who want to look and feel good while going through chemo.

April 17th 2009 .......................May 12th 2009





Monday, May 11, 2009

Whats next?

I am by nature an impatient person. I wish I could go for a scan to see how things are doing up there in my brain. It does seem strange that they rush you to do everything and then you have to wait for six months to see if it has worked. I know swelling...

So far, I am feeling good. I shouldn't have stayed up till midnight watching movies - very bad idea. The "bag eye" look is not fashionable this season. I asked Leo (rhetorically) if he wants to bath and he said "No thanks Mom, I did already yesterday" I feel the same way! Mothers day was good. My kids made me scones served with tea in bed. They know I have a thing for scones at the moment. Then we all went off to the farm ... I can't believe how busy the past 6 weeks have been.

I am getting tired of the same old hair style. I am thinking of going blond...

Saturday, May 9, 2009

"Wedding" Pics











Here are the pics from the party last weekend...

Thursday, May 7, 2009

FW: ZAPIRO DOES IT AGAIN !!!


I got this via email - very funny. Have a look at the bookshelf. I heard that only 3 of his 6 wives will be coming to his inauguration. Seems a little unfair to the other 3 doesn't it?
I also hear he is trying to take the cartoonist to court. Sounds a bit like apartheid... freedom of speech? I hope they don't sensor blogs now!

Wednesday, May 6, 2009

Have a little faith

I have this (almost superstitious) way of thinking when it comes to attitude about life. I believe that we have been given power in our words and we should not "will" negative things into our lives. This means, don't say stuff that you don't want to happen to you and say good things that can enrich your life. James & I argue about this alot because he says that he is being "realistic" about the future issues - Its kind of like having a big "The end is nigh" poster in our house.

I am specifically referring to our global market recession. It is affecting all of us, big and small. I don't know of any couple who could comfortably say to me that they are continuing as normal. It is something that James & I have to address, as I have not been working for this time which has added to the knock. We should look at it, address the risks and come up with a plan of action. (Very important) When we have done what we can, let it be. We all know that worry can make us sick.

The point of this post is to say that I believe we should be putting a little bit of positive belief into thoughts, conversations and actions. I don't see why we should only make the effort to be positive when we get sick. We should be that way about everything in our life - especially the good stuff. I don't mean ridiculously cheerleader positive. Just have a little faith, believe God will provide and express it in your life...

Tuesday, May 5, 2009

Dunno

My Grandfather went to the specialist yesterday to discuss his MRI results. As I mentioned before he has had severe headaches for a long time. When I looked at the MRI, I noticed 3 little "nodes" (don't ask for technical terms) between his frontal lobe and scull. (In the space surrounding the brain).

Anyway, he asked the doctor what he thinks of the scan... here is the essence of the conversation - in short
Doc " nothing's wrong?"
G-Dad "my Grand Daughter wants to know what those nodules are? "
Doc "dunno"
G-Dad "should I be worried?"
Doc "if a young person had them, I would probably worry, but I think it is old age.
G-Dad "what about my headaches?"
Doc " you could probably use Epilem" (I used that) "I will give you something similar.
- End of consultation

How disgusting is that? Thanks for the answers Doc, don't worry if I get brain fry or anything. You just relax while patients come to you with symptoms that require your specialist attention! This way you could earn money without actually doing anything.

I must admit, I am so tired of the medical fraternity. There doesn't seem to be any consequences. Lets say James says to a client, sorry I can't design your house because it is too completed - here is your bill.

It took them 2 years to diagnose me. Eventually my doctor put it down to stress. (AKA seeking attention) I actionally threatened my gynaecologist - who then diagnosed that it had to do with the brain. (not exactly his field!) Then I went to a brain surgeon who told me (after 2 paid consultations) - he doesn't know what that 5 x 4 x 3 grown in my head was. 3rd specialist and 3 months later - I got the news.

Even to this day I get vague protected answers. I ask questions about what my body is doing and get told that they are not relevant to the tumour. Nonsense. Our bodies are an engine that uses all its parts. One part breaks down - the whole car is affected. Eventually that part is going to cause problems in the other areas. (I don't think my logic is off) Isn't it time for proactive treatment. With all our technology and pioneering, surely doctors could be more holistic?

I have honestly leart more from the internet than the 8 doctors I have seen over the past 5 years. In fact my oncologist "chirped" and said that I am the most informed patient and probably know more about it then him. That is also the reason why I am building up a catalogue of links to sites that have really helped me in the search for answers. (what a difference the internet has made)

Anyway, enough of that. I am getting better and wouldn't have been able to do it without them. I am grateful for their skills. It is time, however, that we become informed and our doctors develop a better understanding of their patient's needs.

I have dropped my anti seizure medication dose by 1/3 (I am not recommending this to everyone) because I felt that it was increasing my toxcicity. I have done this for 10 days and it has really helped with the chemo and my general well being. If I go out I take the 1/3 dose. For me what causes seizures (again based on my personal experience) is tiredness, stress & digestive problems. I need to manage this with the help of the medication. There is always a risk that I could have a seizure. It goes with the territory.

What a long post today! Hope you all have a great day! The first full working week in a month!

d:)

Monday, May 4, 2009

Married again

Well I have to say, that as far as treatment goes, last week was a good week. I didn't get sick, I managed to avoid the flu, I didn't get too tired and I even managed to go out to party!

The real problem I am having is dealing with are the effects of the Zofran. The stuff is like casting concrete. Anyway it will come right and I have at least a few weeks to get it settled. (To then start the whole fun process again) I am going to see if there is some sort of alternative. I only used half a tablet a night during the last 2 days of treatment .

Anyway, my "live it up" motto continues. We went to Cheryl's party on Saturday night at one of the local clubs. The theme was "Suits & Satin" The only satin I have is my wedding dress, so James & I went in our wedding outfits! It was quite a lot of fun. I introduced by saying "This is my husband" (duh) Luckily my dress is not a meringue, so it can pass for cocktail. The dress is a little too big for me now ... the no exercise I think! I haven't got a picture from the weekend yet, but I will put one up from our wedding day, in the meantime, so you can see the dress. When I get the pics, we can compare them...





I can't believe how much has happened in the 5 years since that day...

  • James became a husband and dad of 2... and then Leo (who is 3 years old already).
  • The older kids look so young and tiny. James adopted them, Anastasia is in High School now and looks alot like me!
  • I started consulting independently (so I could work a bit at home from when Leo was born)
  • I travelled around South Africa for 3 years on work (while pregnant)
  • James got to design his own home which we built. (while living in it) We really stretched ourselves.
  • We have gone overseas and visited 5 countries (plus local holidays)
  • I started painting
  • James has had big changes in his business.
  • We bought land out at Lake View, which my folks have already moved onto, that James is developing into an estate.
  • James is trying his hand at wine making
  • And of course ... I was diagnosed with a brain tumour.

I still love James as I did that day. I don't know how I would have coped if he wasn't around. I look back at what we have gone through and achieved as a couple. I have to thank God for bringing him into my life! I am so grateful that I don't have to journey through life on my own.

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