How time flies when you're having the time of your life

Wow! I can't believe so much time has passed since my last rant. But to be fair, so much has been happening and life has been such a jol!

First I'd like to report back from my last blog:  I am sooo excited and thrilled to tell you and anyone else who will listen that I have been given the go ahead to do the TheraSphere Treatment (radiation beads) again. Just a little more waiting for medical aid approval and doctors schedules and I will be heading into the theatre for what I believe will be another life changing exercise. (A huge Thank you to all my doctors who keep researching and pushing for me!)

I'd also like to tell you how good life has been to me recently.  My family and I went on holiday to the states. DisneyLand. Miami. Royal Caribbean Cruise. It was magical! Ok, Disneyland can get a bit much but to see the look on my daughters faces was truly priceless. To have been able to be together and bank the memories that we did will be something that I will always be eternally grateful for.
What I am also so blown away by is the stuff we / I did. I did things on my bucket list that I didn't even know I wanted on my bucket list! Dave and I zip-lined across an ocean (High and very scary). We went on the scariest roller coasters ever, and made it out alive. We got to swim and touch dolphins (in a controlled and well organised sanctuary). We went to Cozumel, Mexico.  I have got to go back to Mexico! We saw Cirque du Soleil... I could go on and on but the point I am trying to make is that I got to do all these things with my family and because of my family! For a girl who should have been dead, I was having me a whole lot of fun with my favourite people in the world!! Thank you Babe!

It was my birthday on Monday and life again showed me how good it can be. Not only was I treated like a queen, woken up with breakfast and pressies in bed and spoilt completely rotten by everyone but I was given an Oak tree. Yip. My gorgeous friends bought me an oak tree to plant and watch grow. Oak will be planted at an official planting party and I will post pics then :-). Thank you gorgeous friends! Thank you!

Life has been so good to me and I can only hope that everyone knows how incredibly humbled and grateful I am!
I really think I am like the luckiest girl in the world!!!

I was chatting to a friend the other day and he asked me some hard questions and shared with me some harsh truths. He said my blog is great but wanted to know how I was really feeling. "Not just 'how are you?' but how does having cancer really make you feel Bronwen?" Obviously it has been running through my mind ever since, and I keep coming up with the same answer.

I am pissed off!!

Not the 'why me?' or 'I am so cursed' kinda pissed off. I'm pissed off because of how much it has affected my life, and still does. When I say my life, I mean everything and EVERYONE in it, because they are my life. The people who I love are my life. My husband! My kids! My family! My friends! Me! I am so annoyed with the fact that my children had to see me like that. That the word cancer is part of their vocab and when I say something like my boob is sore, my 10 year old says "I hope you are not getting breast cancer now too mommy." I am so very pissed off with the fact that my husband had to became my doctor. That he can never erase what he saw last year. That it took me from the wife he knew to the patient he still has to worry about. How do you go back to being husband and wife when this shit has made you doctor and patient. (I know that is what marriage is about and I would have done the same... but did it have to make me into a pasty, bald, sweating, fitting whale that my husband had to save every morning?) I am upset for my folks because no parent wants to face the prospect that their child might die before they do. It's not natural. I am pissed off because sugar lows would send me into mind altering, aggressive rages and I swore (nasty, unforgivable things) at people I love! I am so incredibly annoyed by the fact that people think I am brave and a fighter when I don't feel like that at all. Bravery is when something scares the shit out of you but you make the choice to do it anyway. I fight this disease because I have no choice... blindly throwing punches at my opponent, while keeping a positive attitude that one will strike the winning blow. I can't stand it that I feel like such a fake because most days the fear of this disease cripples me emotionally and I don't know how to get a hold of myself. I am angry because instead of grabbing every opportunity and living, I am just alive and so fearful of my given disease that I hide from everything that I could and should be doing. I hate that it makes me feel so pathetic and so very very sad.

Please don't get me wrong, I am so grateful for so many things and trust me when I say I have a wonderful life that I really do not want to give up. But today I am pissed off!

HANDLING THE CHANGE

Update: Docs are all on the same page, which is fantastic, but we have to find out from the manufacturers in Canada if having the therasphere beads done again is a viable option and what the side affects will be. So patiently I will wait :-)

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This weekend was brilliant!  Friday I had a dinner party with friends I had not seen in months and saturday was spent with friends I had not seen in years. Both evenings were filled with stories of way-back-when and hilarious memories of when we were young and invincible. The most amazing thing about it all was that as much as all of them had aged (just a little) and their lives taken different paths, none of them had really changed at all. This got me thinking about all the change I have been through over the last few years.

You cannot go through the fight of your life without it affecting you. It has to change you. It will make you stronger, perhaps wiser, definitely more spontaneous and without a doubt more aware of yourself as not so invincible after all. But those are all emotional changes. Does facing death change how you look? Ok fair enough, surgery leaves you with scars, for some chemo sheds those unwanted kilo's when you need them the most, and for others, you swell up like a balloon.  I had the misfortune of getting the 'you constantly have to eat or you will die' cancer, so I was enormous... but that's a whole other story.  Although I have managed to loose alot of the weight I was wondering if I look as different as I feel.  I keep looking at old pictures of the young me. But they were only taken 3 years ago! Is this huge change in my psyche reflected on my face? Do I look different to people or do I look the same except for some weight gain and new, rather unruly curls on my head. Do people see the change as much as I see it. As much as I feel it?

The even bigger question is... Have I embraced this change or am I secretly hoping one day I will look like the old me again? Hm!

Hoping for Combat

I find when ever I have a big day at the doctor coming up, I tend to keep to myself. Minimal people contact and phone calls, then I don't have to talk about it. I have one of those days tomorrow...

On the 11th of December 2010 I had radioactive beads inserted into my liver.  Those beads pretty much saved my life. Last year I couldn't drive. My husband had to save my life every morning and sometimes several times a day. I couldn't be left alone in case I went into an insulin coma. I couldn't walk up the stair case at home without going into a complete sweat and needing to sit down and rest. It was definitely a version of living hell, especially for my family (and very brave kids) who had to witness it all. We had spent many months trying different medical options. Surgery, injections, sugar drips, chemo and any other weird and wonderful option that was put in front of us. Finally, after what seemed like forever, and thanks to the constant pushing and research of my surgeon, we were given a viable option. After having been given only a year to live, those tiny microscopic glass beads filled with radiation gave me life again. I can drive. I can do small amounts of exercise. I can be left alone. Everything is so very different to last year and so very wonderful! I love being alive!

Here's where the big day comes in. The tumors on my liver have reduced by nearly 50%, and I have exceeded everyone's expectations but the little shits are starting to wake up again. Tomorrow I go see my Radiation Oncologist to find out if it is possible and viable to do the procedure again. Tomorrow I find out if my liver and body can handle another dose of radiation so soon. Tomorrow I find out if I can nuke the bastards some more and reduce them again. Tomorrow I find out if I can declare war on the unwelcome once more.

My biggest fear is that he says I can't, that I need to wait a while. I don't want to wait, I want to fight!

Roll on Wednesday because no matter the reason, the waiting is ALWAYS excruciating!

Curly Kop

When you have cancer you generally have to do chemotherapy. Not always but generally. Now obviously it sucks. You fill your body with poison to kill the crap inside it. Along with a bunch of other stuff you also have to take plenty of cortisone to help the process. Its delightful... All the aches and pains.  The nausea. The exhaustion. The bloated thing that was once you. The list goes on and on.

But there is one side effect of chemo that can be kinda cool, depending on which way you look at it. Hair loss. I know, for a lot of people it is pretty traumatic having to loose their beautiful locks. Especially for woman.  Our hair defines us, makes us feel confident and attractive. And to have it falling out in clumps is definitely an emotional experience. But once you have gotten over the initial shock, there are a few advantages of losing your hair. All of your hair falls out. All of it people, all of it! No one can say they miss shaving or having to go for their scheduled wax appointment. It's fabulous. While you may feel the need to cover your head with wigs or scarves, draw on eyebrows and use false eyelashes, no one is checking to see if your bikini line is still intact. For a short while your body is fabulously hair free. (Even the tiny little hairs in your ears are gone. I found that out when I couldn't understand why everyone was speaking so loudly.) 

The doctors will prepare you as best they can before hand but what no one tells you is what it's like when all the hair comes back. It's like the little buggers have been on vacation and after a well deserved break they are back with a vengeance. Hair Everywhere! Thicker and darker, OK alot of them greyer too, AND CURLY! What they hell? I now have thick and very curly hair and I don't know what to do with it. My fro this morning was so enormous my husband compared me to Marge Simpson. He keeps telling me to cut it but I just cant. Not because I have some sentimental attachment to it but rather because I don't want to have to go through the same growth faze again. Growing curly hair is a messy affair. And for a 'do' that has only one style it very often won't do what you want it to do. Far to much time is spent trying to tame individual strands and strategically place others for a semi descent look.

After this long waffle, I have come to the conclusion that I want long hair. Perhaps a bucket list item?  I think so.

3. To have long hair again.

Long hair to brush, straighten, tie up, braid, whatever. How wonderful it will be to have long hair again. As for the rest of it, an order of non existent please, Thanks!

Bron
xxxx

Count your blessings and I mean really count them!

What a brilliant weekend; time spent with my gorgeous family, great friends and lots of food. Far too much glorious food. But something has been plaguing my mind...

A family friend posted on her facebook status that she would like to start a prayer chain for friends of hers that have found out their 2 year old daughter has stage 4 cancer. (Not sure what type but does it make a difference?) How awful for that family. How do they even begin to cope or process that? The only way I can try relate is by sharing my story.

Remember I told you that Phillipa went for an MRI on her arm. Well that was to test for a rare form of child cancer that starts in the bones and if it was to be, she would probably only live to be about 10 years old, maybe more. The entire process felt distorted and we were in sheer disbelief. We were told that all the signs were there but in order to make sure we had to send her into theatre for a biopsy. The day before we had to take her to the hospital I went to a yoga class.  I remember lying on the floor during meditation and the tears were gushing down the side of my face. While the puddles of water collected around my head I kept silently begging the universe to please give it to me instead. I hope I don't sound like a martyr but trust me, if it was your child you would want to take their pain away. You would want and need to carry their burden. As I am sure that poor mom would do in a heart beat.  I can only imagine the amount of times she has screamed to the universe to give it to her instead!

Phillipa was amazing and during her biopsy the doctor actually called Dave to come to the door of the theatre to give him the thumbs up. Phillipa didn't have cancer but rather a knotted vein that resembled a tumor. Our child was OK. Our baby was going to be OK!

I don't know if the universe heard my plea's but I do know this. Its easy carrying a 'burden' when there is even the remotest chance that it could be for your child. Actually its a privileged and a blessing. I often wallow in my own self pity about how long or short I have left on this earth, wondering how much of my children's lives I will bear witness too. But not this weekend. This weekend I was so incredibly grateful to have had lived this long. To have seen my daughters turn 7 and next month 10. I have those memories and nothing can take them away from me.

So please, if you are religious or even if you are not, please send lots of positive, healing energy toward that sweet 2 year old and her family.

Thanks
Bron xxxx

Can I grow an oak tree?

So MRI done n' dusted.  Its weird - and I have said this before - having a scan is like doing an oral presentation or taking an exam.  You are anxious before the time and hope you will put up your best performance. Once it's done, all that anxiety goes away, you feel some what euphoric and figure what ever happens, you'll deal with that later, at least its over for now.

The MRI did give me a chance to think about the next item on my bucket list...

2. Plant an oak tree and watch it grow.

Now I know this might sound fairly arb, but if you know me you will also know that my fingers are about as green as Shrek is handsome. So I want to plant this tree, see it survive my fingers and hopefully be around for a very long time to witness it grow into a magnificent feature at the bottom of my garden. Don't you love the way an oak tree changes through out the year?  Its vibrant red and orange leaves in Autumn and its huge shade offering gentleness in the summer. YIP, I want to plant an oak tree.  Anybody keen to come a planting with me?

Small oak tree at Glengarry Natal Midlands

Comfort in strange places

Certain situations or places are just not lekker to be in. Like the municipality offices or an exam room. A long queue in a bank or sitting next to the fat oke in the cinema when you are 8 months pregnant... you know what I mean? Another one of these places is inside a MRI machine/tubey thingy. I remember the first time I saw the machine.  I had to sit inside the room and watch and comfort my eldest child while they scanned her arm.  I was so proud of her and thought she was incredibly brave. I only knew how brave when I went for my first MRI.

We were still trying to figure out what was wrong with me so in one day I had x-rays, an ultrasound, a CT scan and an MRI. The CT is semi OK except before you go into the donut they feed you a litre of this kuk liquorice tasting stuff so whatever needs to, will show up nice and brightly. Hideous!

But the MRI is far more intimidating. 'Sorry for you' if you are freaked out by small spaces because they slide you into a white tube and tell you to relax and lie there very still for oh, and hour and a half. The thing vibrates, turns and churns around you and screams so loudly you have to wear earphones. To top it off I had to breathe in and hold my breath every so often for up to 40 seconds at a go and midway they stuck a needle into my arm with some more of that funny dye stuff.  You try doing that for over an hour and see how relaxed you are!

Needless to say I have done that same MRI too many times to count and tomorrow I have another one. I take comfort in the fact that I know the nurses and staff, they are friendly and always ask about my progress.  I know what is expected of me so there is no need to feel apprehensive or scared. I also love the fact that last year I couldn't get there by myself, Dave had to drive me, but tomorrow I will be steering my own chariot. (Don't get me wrong I love going with Dave, its just a small victory that I like to celebrate.)
A MRI is not an environment that I ever imagined I would get use to or feel comfortable in but there you have it... I'm comfortable in that very strange place.

FYI:

Magnetic resonance imaging (MRI), or nuclear magnetic resonance imaging (NMRI), is primarily a medical imaging technique most commonly used in radiology to visualize detailed internal structure and limited function of the body

Completely new to this

I was inspired by a story I read the other day. A young girl who is dying of cancer posted her bucket list online for the world to see. I keep telling myself that I need to write a bucket list, but I never have. So after having read her story I decided to start writing it down, along with the struggles and stories, both good & bad, of my cancer to whomever wants to hear it.
This is my very first time posting on my very own blog.  I never thought it would be this intimidating, but I find myself quite nervous and panicking about what to say or where to begin. So I will start with this...

Bron's Bucket List:

1. Learn to ride a motorcycle...

Got the ball rolling today.  Phoned to find out how much the lessons are and where I can have them. Now I just need to convince my husband, Dave, and I will be on my merry motorbike way!

Hopefully I will have my head wrapped around this whole 'sharing with the world' thing and I can tell you more about My Big C tomorrow.

Cheers
Bron xxxx