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Archive for October, 2010

I have become an international out reach co ordinator for FORCE (facingourrisk.org) Brining the first FORCE  community support group to New Zealand!

When I was first diagnosed as having BRCA my genetic counselor told me that the only support group available to me was for Breast cancer survivors. Feeling like a bit of a fraud having not had breast cancer I decided it was not a support group in which I would feel entirely comfortable in. So I decided to pretend that I didn’t have the gene and therefor I didn’t need to talk about it!  That was until I started doing some research and started to grasp the enormity of having the gene. Thankfully I found BRCA Sisterhood on Facebook, the BRCA Umbrella and also FORCE. I found it mind boggling that I could talk with woman all over the world about BRCA but yet couldn’t talk to anyone in New Zealand! well now that’s about to change!

I am not a qualified genetic counselor (nor have I ever said I was) and whilst I don’t have experience in that particular field, I am full of experience in BRCA and what it feels like to lose your boobs and ovaries! I am ready to give to the community and will do my very best to help anyone who needs it. This is something very close to my heart and I feel very passionately about it.

I am trying to organize the first FORCE meeting for early next month..

To view FORCE NZ’s community page follow the link below

http://www.facingourrisk.org/FORCE_community/local_groups/int-newzealand.php

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Existing not really living…. Is how I’m feeling at the moment. My life has been in a sort of limbo since I had my PBM in February this year. When I lost my boobs I lost a spark that I had, a carefree part of my life that I think I took for granted. I keep thinking that I will wake up tomorrow and my “new” life will finally begin, but it’s not that easy. I feel shadowed by a cloud of fog, and some days I feel like I’m suffocating from being BRCA+.

I don’t want to pretend that what I’ve been through is easy, infact it’s been the hardest journey of my life, but at the same time, it’s the most important one. I’ve made an appointment with my doctor to talk about my insomnia, my raging hormones, and the fact that I may possibly be suffering from depression. It could also just be that MENOPAUSE is to blame and I need some sort of hormone replacement.

I saw my PS surgeon Last week, I was due for my re do over surgery in two weeks, and together we decided it would be best to put it off until next year. She could tell that I wasn’t completely ready and my body is not co operating the way it should, I still have small holes in incisions, my iron levels are almost nothing AGAIN and if the shots and tablets don’t start showing an improvement soon I will need another iron infusion…Don’t know why but my body has never been able to absorb the iron that it needs. Having the surgery pushed back means I get to enjoy my daughters 5th birthday, my birthday, wedding anniversary, christmas and of course NZ summer! and it also gives me time to find the medium where instead of just existing I can learn to start living.

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Numb

About a year ago I became part of a sisterhood that changed my life forever, and I became friends with  the most amazing women I have ever met. We talk on an almost daily basis, sharing in every detail of our lives, we are sister’s, together in the good and the bad, we share the highs the lows and everything in between. I can’t imagine life without my sisters……

I have not been living with the lights off or even in denial, I have faced this mutation head on from the start, but this week I met something called REALITY , and man does it suck…

I woke up yesterday to the news that one of my  Sisters was in hospital and not expected to live. The message seemed to swirl in my head, I stood up from the computer and walked away, thinking that maybe when I looked again it would say something different, maybe I had read it wrong…Surely it can’t be right, there had to have been some kind of mistake. In that very moment for the first time in my life I felt vulnerable, I felt scared beyond words, I felt that maybe all the surgeries I am doing to save my life have been a waste, as death will find me anyway. I felt almost lost, empty and alone.

As the day went on tears seemed to come easily, I felt like a child who was lost in a crowd and was desperately seeking a familiar face. I had very little words to say as everything I wanted to say got lost in the sobs that my body could no longer control, still I could not get my head around the fact that I was about to lose a wonderful friend who was far to young to die. Then came the anger, I HATE this mutation, I HATE that it is robbing me of my friends and family, I HATE that it controls my life, I HATE that I HATE it….

The day became a blur and I was constantly checking the computer for an update, maybe the doctor’s had gotten it wrong…Then the reality of seeing these words really started to sink in:

Hi Karin
I am sending messages to some of ELaines Brca sisters to give the full story but she does not know the extent of her problem and as you will understand I have confiscated her phones till she knows so she cannot find out by accident. SHe had a headache on Thursday and she looked like she had had a stroke so I called an ambulance and she went in to Poole GEneral. ON Friday I was told she had had a massive bleed in her brain and it may have been due to a tumour about a third the size of her brain which is suspected to be a secondary to her breast cancer. TO the doctors surprise she lived through Friday night and at present is recovering but could relapse anytime. SHe was lucid when I left her tonight but a bit confused possibly due to tiredness. WE hope to get her back to BIrmingham in the next few days to QEH hospital where she may or may not get radio or chemotherapy but in the long run the tumour is likely to be terminal.
I am sorry to be the bearer of such bad news and feel like I am living a nightmare.
PLease feel free to pass the message on.

I must have read this message at least a hundred times, yet I still don’t believe it, I can’t believe it, I refuse to believe it. I am not ready to lose Elaine, I’m not ready to lose anyone, I’m not ready to face reality either…

Helpless is how I feel 2day, Elaine I wish we weren’t so far away, a simple hug & a smile, I’d like to stay and sit a while. I’d like to hold your hand & say, Magic wand please make this go away. Elaine, stay strong my special friend, this surely can not be the end…

Elaine,

If I could go back a week and tell you something, it would be something that you already knew, something that I am glad I told you often. I am so proud of you for everything you have ever done in your life. I am proud to be your friend and sister, I’m also lucky to be both.  I love you to the moon Elaine, love your little kiwi xoxo


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Last night someone asked me about my tattoo’s and if they had any meaning… The only way to describe my latest work is by telling you it stands for yesterday, today and tomorrow….  It starts at the top of my arm by my shoulder, with a full moon and some dark clouds and stars (this describes the beginning of my BRCA diagnosis) then under that is a dolphin swimming in circles (which is how I felt) under that is Marlin (not nemo!) and dori.. this represents me looking for answers and also wanting to forget. Then I have a big pink koi fish swimming upstream, which represents strength and courage, on both sides of this big picture is pink cherry blossoms which represents new beginnings, some blossoms are at buds, some are just opening and some are in full bloom, then there is one single cherry blossom that is starting to lose it’s petals, this is what I call yesterday, today, tomorrow.

I remember the day I met my tattooist, I was 16 and was working in a very upmarket suburb for New Zealand Post.  He walked in and the other tellers all gasped (I think they thought we were about to be robbed!) I was intrigued and glad that he chose me to serve him. We got talking and he told me he was a tattooist and  worked down the road and I should come for a coffee at lunchtime, that day started a beautiful friendship that was so honest and genuine.  Every lunchtime I would go to his shop and have coffee, this went on for a year before I decided he was the “one” to do my ink. I needed someone to understand my “story” and portray it the way I wanted. My first ever tattoo was dedicated to my horse.

My family owned race horses and 2 of my brothers were jockey’s, I rode as well but just before and after school and on weekends. Dad had these two beautiful little gelding’s, Kingi and Flicker and they were in training. I remember this day so clearly. Dad had dropped me off at the paddock on his way to work so I could work the horses and what I found that day changed my life forever. I found my horse had been killed, his throat slit and legs cut off, I can’t remember actually finding him (that part of my memory has remained locked and will continue to forever).  So when I decided on my first tattoo that is what I got, and in some strange way the pain of that tattoo made me feel good, and so the cycle began, every time I felt I needed pain or to punish myself I would get another tattoo and the pain of something else would hurt that little bit less….13 tattoo’s later………..

I am older and I guess wiser, I have recognized that getting more tattoo’s don’t actually fix the hurt that I’m feeling and while it does dimmer the pain it’s not fixing the problem. So now my tattoo’s are not about hurting myself or punishing myself but about expressing myself, about telling my story in pictures…My tattoo’s tell a story of my journey through life, the good times, the bad times, the sad times and though not everyone will like them they mean something to me, and I don’t regret any of them.

I would like to say I am finished getting inked but it wouldn’t be true, at least now though I am getting them for reason’s other than to feel pain.

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