Saturday, March 15, 2014

Thank you.

Having the BRCA gene, no matter your age, family history, or socioeconomic status, it is certainly going to honestly feel like you have just walked into a nightmare somedays. Everyone who has been diagnosed with this gene has their own story which when you compare them are all scarily similar. We are all under the constant pressure and stress every time we feel a slight twinge or that area in the left outer quadrant just feels different to the rest. The mind games you play with your self that you swear you saw something on that ultrasound, and the nervous wait for your MRI results hoping not to be taken through for yet another core biopsy. Every tiny change is scrutinized and although you try and play it cool, you always have that one word screaming inside... Cancer. 

I am 27. I am a qualified general sonographer with my masters specializing in venous incompetence ultrasound. I have a beautiful family. My amazing two year old miracle Brindy and my perfect partner Rodney. We are surrounded by the most amazing family and friends. I am also BRCA1 positive and on the 25th February underwent the first stage of my preventative surgeries, a double mastectomy, nipple sacrificing with expander insertion. I have two incredible surgeons. My gynecologist actually called me up before I got the chance to call him with the results, just see if I was OK. I feel as if I have the most amazing support network to guide me through this. 

However lately I have been thinking a little bit closer at what the people around me are going through? Rodney and I have always had an amazing ability to communicate well with each other... until this came along. I struggled to open up to my feelings regarding the gene and more found I could not talk about the stresses of it (hence why the blog was started). Rod simply held my hand through every step, not once judging me for my choices. Although he desperately wanted me to make the choice to have the preventative surgeries he never once told me this. This was a very personal and difficult situation which I had to find my own way through. This is extracted from his post he wrote:

“I always wanted Tamtam to have this surgery, for selfish reasons, I love HER, I have found somebody who I want to grow old with, to raise our daughter with (everybody who has seen our 2 year old agrees that she is amazing), to have a peaceful and meaningful home life. I have looked at what having this gene means and know within myself that this is the right choice for our family. It has still been Tamtam's choice but I am glad she has made it.”

Although he had lightly mentioned this in passing to me, this was the first time I had really understood what he was going through. Coming along to every scan, biopsy, Dr’s appointments I could tell he was struggling but tried to just play it calm. This point hit the hardest coming home from hospital after my double mastectomy. The amount of stress Rodney was under was immense. The pressure of me going through surgery, waiting for biopsy results, and still trying to keep everything together for our daughter was a struggle, but he did it (I am unsure exactly how much beer was drunk each night though!!). I appreciate how much he is looking after me, cooking me dinner, driving me to appointments, has my drugs sorted and written on the board. I do know this has been more of a challenge for him than me.

We have no family close to us, and although I know I have support from my family in Bathurst, Perth, Canberra and Brisbane, it does make it difficult. I can only image the pains my oldest sister is having watching our middle sister has cancer, followed by my mum and myself having drastic preventative surgeries. My oldest sister is blessed to not be a carrier of the gene but watching does not make things easier. Likewise with my middle sister who bravely is now 2 years cancer free *Insert happy dance here*, but had to watch from a distance me having the surgeries.

My parents have both been an amazing support. I know for my mum she feels a lot of guilt and blame as if it was her fault the gene was passed on to me. I know this feeling to a lesser extent, the fear that I have passed this on to my own daughter haunts me. These words are from my mum:

“As a mother you never want to see your children hurt or sick. It was the worst year of my life watching Jessica go through the chemo and radiation. I hold my breath every time she goes to see a doctor. I am so pleased that now you will be spared all that and you can get on with being our beautiful Tamara.”
My friends have also been a beacon throughout this. From texting and calling, dropping in DVDs, pedicures, and some even seeing my scars, have all been so supportive. 

I actually have just had my second photo shoot with Bambi, and although still working on the fine art masterpiece, she took some photos of Brindy and Rod with me. I know how talented Bambi is and that her creativity of my three stage photo will be AMAZING... it is these unexpected photos of my family that have captured my heart. Thank you Bambi for just being you, and for having such supportive and encouraging words regarding my scars... you were, apart from my surgeon and Rod, the first to see them which on its own was in some ways was honestly worse then holding onto that 8ft python! Thank you xox

I received so many flowers, chocolates and gifts throughout the last week... In fact I write this whilst mindlessly eating my way through a packet of favourites... There was only one Crunchie in there though! Disappointing!!!!! As much as I love them (my family not the chocolate) and appreciate them, it is my family and friends who deserve to be spoilt. You have all been my strength and my courage. Without your support I could never have gone through so much. 

Although I have been scared and confronted by this gene, I know there are so many people around me who love and care for me, who are feeling even worse. I am just letting you know how much I love and appreciate you. 

With two more surgeries coming up I know I will need everyones further support. This is a tough journey but glad I can share it with you all.



Tam 

xox














And a sneak preview of what is coming from the fine art masterpiece!! xoxo


Tuesday, March 4, 2014

Tissue Expanders

There has been many questions regarding what exactly my expanders are.
Essentially I have two hard plastic "balloons" which have been placed behind my pectoralis muscle (the major muscle which runs underneath the breast tissue). Over a period of a couple of months these will slowly become inflated with a saline solution. At the moment I have about 100cc of fluid in them which was done during surgery. Using expanders this way allows the tissue and muscles to settle and relax prior to inserting the final implant. Essentially results in a better cosmetic result. 

These certainly are not the most comfortable and at times I do feel pinching and pulling from the muscles. The harder plastic does make them difficult to rest on and with the help of a lot of pillows I can now roll on my side. Yew! 

Pain wise doing well though. It's difficult to sleep but I honestly think that is because I can not lay on my stomach! I keep getting into trouble for doing too much but I am trying to take it easy. The hardest thing still is not being able to pick up Brindy. :-( 


Image extracted from www.vanlaeken.com - tissue expander reconstruction.


I am currently trying to find more details on how many people in Australia have actually had this procedure. Not coming up with too much at this stage! I'm intrigued as a couple of the nurses mentioned I was the first one they had seen with expanders. I'll get back to you on this one!! 



And an update on my car... Nothing major... Just an entirely new engine required!!!! Ggrr!!! Not exactly impressed as it's only 4 years old!!  Anyone know any good reliable runabout small cars they could highly recommended?!?!?

Love you all.

Tam

Xoxox








Sunday, March 2, 2014

Boredom

I'm not one to sit still for long. So put into a situation where I get hot sweats and dizzy, not to mention increased pains when I'm up for more than 5 minutes is not only uncomfortable but painfully boring!

I was so excited to have two amazing friends come round yesterday who bought my favourite BBQ shapes and chocolates. They also surprised me with a pedicure which was just heaven. My feet are still feeling silky 24 hrs later! Georgie and Kate thank you. I smile every time I see my gorgeous nails! 


The girls had their nails done as well. 




Rod fixed my iPad which hasn't been working for months, so I'll be able to start editing my masters book. Aim is to have two ready for publishing by the end of this! 

I of course have the company of my beautiful cat who hasn't left my side since I've been home. Love this boy. 


The other painful bit is staring at my walls which we haven't painted yet. Feel like I'm still in a fruit bowl. Horrible greens and purples everywhere!!! One day we will have the chance and finances to fix inside!! 



Despite being bored and seeing jobs everywhere that need to be done, feeling rather uncomfortable today. I understand my surgeon had to make an incision through part of my muscle. I believe it's this that is most uncomfortable today. Midline chest is very tender and is making my breathing feel mildly limited. More constant discomfort and cramping sensation. On the plus side the expanders themselves don't feel quite as painful today. 

My movement is slowly getting more. I am being cautious not to push it. 

All in good time. 

Xoxox