Wednesday, December 31, 2014

Time is priceless, but it’s Free.



"Time is priceless, but it’s Free. You can't own it, you can use it. You can spend it. But you can't keep it. Once you've lost it you can never get it back" - Audrey Niffenegger



Writing this on new years eve reflecting on the year that has been.

Recapping:

  • At the age of 26 (just before my 27th birthday), on the 24th of february, I made the choice after countless MRI's and ultrasounds, numerous biopsies and fine needle aspirations, after seeing a malignant appearing lesion on my breast ultrasound, after hundreds of trips to Caloundra and Buderim seeing specialists… that it was time to remove my breasts. I underwent a double mastectomy. 
  • Prior to this surgery however was of course naked photo shoot with a snake!! AS YOU DO apparently thank you amazing Bambi and Kimberly!
  • Fortnightly visits to the beautiful Lisa Creighton to have my expanders assessed and filled following the mastectomy.
  • In April I decided that we needed to fly to Adelaide. Graduating from my Masters of Sonography a definite highlight! Being able to share this with my proud mum and Dad, as well as Brindy and Rod made this perfect!
  • Beginning of June sometime….. Kicked in the mouth by horse. Lost 3 major teeth and chipped two others, busted lip, and torn lateral meniscus in right knee… Emergency dental work performed!!
  • June 18th was round two for breast surgery - transition from breast expanders to implants. A very welcome surgery that I coped with much better then the first! Although being swollen and bruised, I was enjoying the swap to the comfy non hard implants!
  • June 21st - Found out I was pregnant (a couple of days after last surgery) - confirmed on ultrasound. Panicked phone calls to anaesthetist, surgeons, obstetrician etc
  • July 16th - A very hard trip back to the operating theatres at Buderim Private as we said goodbye to our son who was not strong enough to hold on.
  • October 8th - Both ovaries and tube removed. Followed by starting the full blown HRT.
  • Beginning of November - New permanent teeth put in!

Lets face it…. what a shit year! A year that I am very glad to see the end of. With so many down points all I can honestly see is the good. 

I can see that my body, although very different to what it use to look like, does not have a looming scary very high percentage of breast and ovarian cancer lingering over it. My stats now are the same as yours… if not lower! (or non-existent when you count in that I don't have ovaries any more!). Although not an easy choice to make with many hours of counselling and self reflection, I stand by my choice. That is the biggest part of this though… MY CHOICE. I know that if faced with a similar situation others would react differently, however when it was time to say yes or no, a beautiful friend told me to close my eyes, and ask myself the question… and then listen to the answer. I knew when it was the right time.

I have updated now the photos for post op - as before I have put them into a separate linked page with the other surgery images. I have explained previously that I share these images for those who are contemplating this surgery. The images are confronting - some of them straight post op. When making an informed decision re surgery I felt comforted by seeing the results of others that had finished. Please respect the reasons why I am sharing them and do not follow the link if you do not wish to see surgical images of my boobs!



The hardest part of this journey was saying goodbye to Finley. Our littlest miracle who is now by far, the brightest star in the sky. We think of you everyday and it was unfair you were taken from us. You were just too beautiful for this world and we are thankful for the joy you bought us, even if it was only for a short time. 


~~~~~~~~~~~~~~~~~~~~~~


I have been sitting here for a while now trying to find the words to express how I felt about this year and everything that we have been through… strangely though none of what is going through my head is what I have been through...

I am thinking about my patients… whom with the results of what I see on a screen can dramatically change their lives. There are numerous patients who I have had the pleasure of meeting this year, some have since passed, who I will never forget. Patients who prove that when faced with the worst situations, the best in them comes out. Patients who I get to share their exciting news with. The patients who always greet you with the warmest smile and hug you could imagine. Patients who speak their minds and are not afraid of what the people around them think. The most honest humans who are just magical to meet. Thank you for letting me be part of your lives! 

I am thinking about my surgeons… The amazing Dr Lisa who not only helped me through emotionally this year and has given me great boobs in the end! But she has / is looking after so many others in the same situation as me. A truly caring soul who goes out of her way to make sure you are ok! Even when I was in surgery under a different doctor she ran in to give me a hug! If you are reading this as one of Lisa's patients… you are in amazing hands. Trust her! 

My amazing Dr James… you have been there from before the start of this diagnosis and haven't left my side! How often do you walk into a consult, or into surgery, only to be meet with an enormous hug! Or similarly when I am sending PhD emails from my post op hospital bed and get a text message just saying "Go back to bed Tam!". The most amazing person and caring Dr. I am SO proud to call you a now supervisor for my PhD!

I am thinking about my work family…  both Cooloola Radiology in Gympie and QLD Vascular. You have all supported me so much this year and I thank you from the bottom of my heart. We all have so much to look forward to in the coming months/years together. Better times are ahead for all (and more 30 second dance parties are required!).

I am am thinking about all the amazing times I have to look forward to with my family. I can't wait to cause mayhem with my sisters by my side, to have a rum with dad, to just cuddle with mum. I can't wait for overseas adventures with Rod and Brindy and simple moments of just being together as a family. 

I am thinking about my amazing and beautiful friends. You know who you are and how much you mean to me. Bring on exciting times ahead of weddings, horses, dancing, babies, love, magic and much drinking!! "Don't you think it's better to be extremely happy for a short while, even if you lose it, than to be just okay for your whole life?"

I am thinking about horses and competing, training dogs, and flying higher in the sky then ever before.

I am thinking about my floppy hat that will mean you will all have to call me Dr Tam!




So many things to look forward to… Why would I want to stop and think about the cancers that would have taken this from me? 


I was unlucky enough to be given this gene… I have done everything possible for it not to take me. I have too much stuff still to do here…



To a better and more amazing tomorrow…. Cancer Free… Take that BRCA1!!


BRING ON 2015!
Happy new year everyone. Thank you for sharing this journey with me. 

































Tuesday, October 7, 2014

An ovarian adventure...


So... There has been much build up to tomorrow. The what is expected to be final surgery in this nightmare of a journey.

So the decision to remove all of the potentially dangerous tissue in my body due to having the BRCA1 gene, or breast and ovarian cancer gene, started with the double mastectomy, followed by reconstruction. After finding suspicious lesions within one breast this was a very easy choice. Either have the surgery now, or wait till this lesion was multiple and having to go through chemo and radiation. Although an uncomfortable and still slightly awkward process, not to mention I still wake up with stinging down one side of my right breast, this part of the journey made sense. 

The next part although the much easier surgery... For me was the harder choice. I am only 27. I do have the most beautiful daughter. However what most of you do not know is that she was a miracle on her own. We had a small 7% chance of actually falling pregnant, and by some miracle it happened. Due to a uterine malformation we were expecting the arrival of a premmie. After a placenta rupture at 29 weeks gestation our amazing life became even more beautiful. Brindy spent a long 5 weeks in NICU at royal wemons hospital followed by another 2 weeks in special care at nambour hospital before we came home. Although a difficult and emotional time our little girl was strong and made this journey easy. 

The opportunity to have a second child was discussed but ultimately Rod and I made the choice that we were not going to have anymore children after this. The risks involved in having a second were high with the outcomes likely to be not as lucky first time round. 

I wanted to explore all options prior to commiting to the oophrectomy. We talked to IVF and the possibility of genetic testing the embryos for the BRCA1 gene. Due to very very very low egg counts the possibilities of this were slim on its own. We looked at the realistic possibility of trying again but ultimately with IVF or not I just do not have the ability to carry babies long enough. Many drs have said it... Our beautiful Brindy really was a fluke. We got lucky with all odds against us. 

Further to this after the bloods results and tests the likelihood of early menopause were increasing. 

Even if we wanted to really try again our chances were slim to none... (This coming from a previous chance of 7%!!).

So... After exploring the many emotions and morals related to this surgery I decided that I would rather be here for my amazing family than find out if have an ovarian cancer which there is no treatment for. 

I had made this decision prior to my reconstruction. 

Whilst in hospital from my reconstruction I was struggling with recovery. I had a lot of trouble with nausea which at the time we thought was a reaction to the anesthetic/amount of drugs I was on. Maxalon helped and three days later I came home with my new boobs! 

Although discussing with my surgeon to hopefully go smaller (aiming for B's) with my size, to Rods amusement my boobs were measuring closer to a D cup! To my amusement... 10 weeks later my boobs are down to a C. So essentially back to normal at least! 

When I sit, stand, lay they really do look normal. It's only when I ... Erm... Pretty much on all fours ... They don't quite look right! But hey... No one sees them like that! So very happy with the result! And I know I have not updated the post op gallery yet (see previous posts for links) but it's coming!!!!

So we returned from hospital after the recon, and three days later I'm still throwing up. I started throwing up more with the smell of eggs, and patterns in nausea started appearing. You catching up to what happens next??? Yep.... Somehow... I was pregnant. 

At first I hated the fact I was pregnant. To start with I had just been kicked by my horse and lost my front teeth which involved hours of dental repair. I had just had major surgery again. I had been taking a massive cocktail of drugs including sleeping tablets and anti inflammatories. Prior to hospital I had no symptoms, regular periods, nothing had changed. 

After many panicked phone calls to surgeons, aneathetists followed by blood tests and multiple peeing on sticks cause I still couldn't believe it we started getting use to the idea. At the soonest chance we had an ultrasound with my gynaecologist which showed a gestational sac with a tiny fetus and a flicker of a heart beat. 

My hate very quickly turned to excitment and love. We had plans quickly for a doing up the nursery again and buying Brindy a new big girl bed (and redoing her room!!). We opened our hearts very quickly to this, our second miracle, who was obviously telling us that he needed to be here.

After returning to work I just couldn't help but have a little look at my new miracle so... As you do... Did an ultrasound on myself. 

Sadly our little miracle was strong but just not strong enough... There was no heart beat visible. 

The hardest part of this was waiting to actually miscarriage. I had pregnancy symptoms still, was throwing up constantly. When your pregnant and throwing up you try to tell yourself that it's worth it, your hormones are strong, that means baby is strong. When you throw up knowing that you have already lost him .... Well. 

10 days later we had to schedule surgery. Once again I found myself back at Buderim private hospital for a d&c. 

Coming to the reality of having another baby, fighting in brisbane for his life, me fighting for my life. The reality was we would have done it, we would have made it through. But the thought now terrifys me. 

Losing my son, although only 9 weeks old, was my defining moment. I know that this is the right choice. I need to be here without a high risk of ovarian cancer weighing over me, over us. 

I started this blog saying I would be honest with my journey here. I am not looking for sympathy, I am not looking for sorrow. I do however wish to create awareness that although a hard decision this choice is not for everyone. It is a very personal choice I'm making to stay by my partners side and to be here for a very long time for my daughter.

Also how would I ride my horses if I'm not here??!? 

So tomorrow my ovaries are being removed and I commence taking further HRT. Another journey all together. 

Wish me luck. 






I was given a bear whilst waiting for my d&c. This bear was donated by another family who also lost a child way too early. Although I walked away from hospital without my Finlay, I did have this bear which in someway really did help... I wasn't quite empty handed. 



Within the card on his chest reads
"An angel in the book of life, wrote down your baby's birth, and whispered as he closed the book, too beautiful for this earth."

The link is below if you wish to donate like we did. 

http://www.bearsofhope.org.au/a/314.html



Tuesday, June 17, 2014

Who is ready for Round TWO????!?

Not only are we watching round two of State of Origin (GO QLD!!) but we are gearing up for second surgery tomorrow. I have just had a phone call from my surgeons office confirming times so now anxiety has hit!

I have had a total of only 190 cc filled into each breast (within the expanders obviously) which overall is smaller than my previous size which I am happy with! I'm too active and given the opportunity very glad to go smaller! I'm pretty sure Rod will never forgive me for this choice though! 

I honestly can not wait to see the end of these hard plastic, lumpy, hard edge, uncomfortable expanders and swap to the smooth silicone! Overall I have not had to many dramas with them compared to others. I still get painful stinging when I lift my arms too high which feels as if the scars are about to separate. This more happens whilst I am sleeping and wake up with the horrible pain and an arm that can't move.

I am nervous obviously about the general idea and outcomes of tomorrow but the hardest part of the mastectomy is done so just keen to get it done. 

It's been a difficult lead up with numerous completely unrelated medical issues sadly happening. The largest of which involving my horse and a gate resulting in 5 missing teeth, busted lip and a tear in my lateral meniscus on my knee. All of which we will deal with after this surgery! 

This journey of eliminating any possible cancer also involves my ovaries as well. The BRCA1 gene is associated with ovarian cancers also which sadly there is often no cure due to the late ability of diagnosis. In preparation for my ovaries also being removed later in the year, I have started on HRT or hormone replacement therapy.  We are slowly introducing the hormones to not send my body into complete shock post surgery. 

I would honestly love to thank everyone for their support during this journey. My blog has reached over 10,500 people and I can only hope it has enlightened, educated, helped others in this situation. 

Kick off is about to happen, GO QLD! 

I'll update you all post op from hospital!

I'll leave you with one of Rodney's quotes  from this experience.... "Nipple reconstruction??? You will be constantly high beaming won't you... Everywhere you go people will be turning the air conditioning down."


Tammy xoxo





Tuesday, April 8, 2014

Coming to terms with the "before" and "after" of a double mastectomy

So not much has been happening on this end… Its a matter of just waiting and letting things settle. Going to be honest though, I was not expecting these expanders to be as horrible as what they are. It is 6 weeks post op today and I still am on cocktails drugs (only predominantly paracetamol and ibuprofen) but still a lot of it! I still have too much fluid on one side so have yet to have my first "fill" into them so still sitting at the standard 100cc… Honestly loving not having the hassle of boobs!! My other breast had mild rippling of the overlying muscle so just waiting and letting things settle. We are hoping after the Easter Bunny visits we may be able to inflate them mildly than start thinking towards the second surgery.

Its not all bad though. I am able to slightly lay on my stomach now which is a HUGE bonus! I stack pillows up in front of me and can now somehow get to sleep! YEW! I have woken up a couple of times though with my arms way to high and this horrible burning sensation rips through my scars. I have had to ask Rod to make sure I was still in one piece on more then one occasion. The other weird sensation that I have also seen mentioned on one of our chat rooms is the nipple sensation… You know ladies when you walk into a cold room and uumm… well… everything stands up! That is a weird sensation to have when you don't have nipples!!!!

It has always been my intention with this blog to be as honest as possible, including posting images of surgical scars and updates. However with almost 10, 000 views on this blog you can image I have been a bit overwhelmed to post photos of my boobs…. or foobs… or at this stage lack of either just in case they were taken in the wrong context!! In the lead up to my surgeries it was however photos of post op scars that lead me to my decision. Seeing what other women had been through was not only empowering but very educational. I learnt quickly what to expect and although it is difficult waking up and seeing the lack of tissue on your chest, at least you have a vague idea what is coming.

So... to not offend people, to not let you miss out on these updates without having these images daunting you, but to still give those who really need to see these images, the opportunity is here. If you follow the link below it should take you to a photo bucket library with images before, 1 day post op, 1 week post op and 4 weeks post op.


Password is foobs25

http://s1220.photobucket.com/user/TeamTamRod/library/Journey%20of%20the%20Foobs



As above I am only sharing these to help others who are facing this journey and NEED these images. I strangely have no attachment to the before photos now. I feel as if they are just images and nothing more.

I have met so many people by making this journey so public and love hearing your own journeys. I have met so many through pink hope, as well as the BRCA support groups around the world. I feel so blessed to be able of so many lives and help educate/ support others in making this decision.



On a slightly different note, I took the opportunity to fly to Adelaide to graduate from my masters degree whilst I have been unable to work. It was a wonderful experience to wear a gown and hat again… however I think I can hear my PHD calling!!??!!

xoxoxox


ONCE YOU CHOOSE HOPE… ANYTHING IS POSSIBLE









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



Friday, February 28, 2014

Feeling Blessed

I'm writing this from my very own comfy bed! 5 and a half days in hospital and although I was getting use to the hot chocolates and yummy biscuits, I am so glad to be home. 

I will miss my nurses though. Met some truly beautiful ladies who are deeply committed and passionate about their job. We had some great conversations, great laughs, and a few even helped with my crossword puzzles which was awesome! I dropped off some flowers and a thank you card on my way out but felt like this was such a small amount to give back considering how much love I received from them. Thank you ladies. I'll see you in a couple of months for round 2! 

An interesting day. Started with some fabulous news that all biopsy results have come back as benign. Although suspicious, my newest lesion still demonstrated benign characteristics. This for me means no chemo or radiation!!! Happy dance!!!

My drains were removed and cannula taken out. Not the most comfortable experience having drains removed but it feels great now! For the first time since surgery I have been able to sleep on my side! Being a huge tummy sleeper it's a fraction closer to comfort! 

My beautiful daughter and amazing Rodney arrived shortly after only to tell me my car that is only 4 years old has just died again. Serviced only 3 weeks ago, followed by having to be towed a week later for another issue, now towed again this morning. Just heart breaking. I love my car!! It's always been up to date with services etc so I'm thoroughly upset over this! You think you buy a new car for reliability only to have this happen! Ggrrr!!! Anyway it's off to Holden.... Again.... For mending. Third time lucky maybe??  (Sorry got side tracked there! Rant over!).

So with no way to get home, in step the wonderful Cody to the rescue. Lucky to as well had sooo many flower boxes to take to the car we needed another hand. Cody, thank you for your time this morning. We appreciate everything you did for us! And Jackie thank you for the flowers and cake... YUM!!! Xoxox

My biggest problem now is fighting the urge to clean, play with the dogs, play with the horses. Essentially just do all the little things you do around the house. I've already been I trouble from Rod for placing flowers around the house and trying to clean so making every effort to just sit! The hardest of course is playing with my beautiful Brindy. She is only two and considering is doing an amazing job of gentle cuddles and lots of kisses. My sister gave me the idea that after her surgery she placed a pillow in front of her chest before hugging her girls, which we are doing now also which does help. Also laying Brindy down first then hugging her that way seems to work. Rod stays very close by at this stage though just incase Brindy forgets so seems to be working well. We still have the hospital books and her favourite doll bandaged just like me. 

Saying all that we may need to implement story time for the dogs! My poor old half blind sheltie just got a freight and jumped up on me. Luckily not on my chest but a bit too close for comfort!! I missed my beautiful dogs!

The other exciting news today was hearing my story was in the paper. Feeling famous! 




I'm surprised with how familiar I am getting with my new appearance. Although I never had an enormous bust I'm rather liking the change of not too much in the front! Sounds strange I know! At the moment the expanders are filled to 100cc so a very small a cup. Maybe this is me feeling relaxed and excited about the now cancer free future that lays before me? I of course still have my ups and downs throughout the day but feeling, right at this moment in time, as if I'm actually going to be really comfortable with how the end result looks. 

Baby steps though. And I promise I am trying to be good and not do too much! It is so lovely to be home though!!! 


So my list of necessities I've found so far for this surgery:
* Button up LOOSE pjs and tops
* Very stretchy dance pants/ yoga pants and stretchy shorts
* Neck pillows for under my arms. I was very lucky to receive pillows from Zonta which had ties at the top to stop them falling down. These had less fill in them and were amazing to sleep with. I had larger foamy neck pillows for through the day which just made everything so much more bareable!
* Bowel movement help was a must. As I'm allergic to codeine I was on a lot of endone (morohine) which isn't the best for keeping you regular. Bring on the pear juice! 
* Puzzle books. I'm obsessed with them anyway but it just gave me something to take my mind off things. 

I had a lot of singlets and crop top type shirts packed but this soon after surgery I am still limited in movement so anything button up I'm just finding way more comfortable. 


Thank you again for all your love and support. 


Tam


Xoxox

Wednesday, February 26, 2014

the blokes perspective

Tamara has asked me to blog my view on this journey of ours, and anything Tamtam wants from me she shall have.

I just want to make it clear to everybody reading this that is considering this radical procedure that it is always your choice, we live in a country that we have this as an option and I am grateful for that, if you have the same gene and the same choice to make, if you choose to not have prevention surgery, to monitor closely and wait or to live your life like you never knew I respect your decision.

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.

It has been tough to watch Bess go through cancer from distance, to have our fears confirmed through gene testing, to have every lump, bump, bruise on tamtams breast be a perceived death sentence. I have tried to be her rock through it all, but to be honest I have felt like an iceberg that has slowly melted away in the hot sun. I fear of my future without her so much, I have found so much meaning in life being a parent, but the most joy of all I have had in this world is being parent with Tamtam. 

When Tamtam showed me her scars today I felt happy and belive it or not I smiled, It was weird because I loved her boobs, but I looked at her and knew that the threat of loosing her, the real Tamtam, the woman I love and will spend the rest of my life with, had just been reduced so much. Thank you for having the courage to have this radical surgery so that we can watch our child grow up together.

Tamtam put up a picture that I have taken of her post surgery that was quite confronting, I took another picture of Tamtam and our daughter with both of them smiling, I want everybody to see it to know that the results are not all bad, that so much good can come from this experience.

Well there you have it, the blokes perspective. I have tried to be honest and open hearted because that is what Tamtam deserves.



P.S. Tamtam is my nickname for Tamara and am trying to get everybody to call her it so if you can help that would be appreciated  


Tuesday, February 25, 2014

Day after surgery - Warning - Graphic images

I've just had my bandages removed and seen (from looking down view) my scars and lack of breasts for the first time. In their place are two very high sitting, what only feels like rocks which are my expanders in their place. I was warned the expanders would sit higher and more laterally but it's awkward feeling these in their place. At the bottom of my breasts are what can only be described as the left over skin. A temporary and uncomfortable experience! The red in this picture isn't bruising, just the antiseptic wash.




My nurses here at Sunshine Coast private have been AMAZiNG!!! And I don't know if it was just the amount of drugs I was on but all look like models! Gorgeous! I'm being well looked after although not to fond of heparin injections.

I have just had my drip removed, however am still sporting these two lovely drains from each breast and will be keeping these for a while. They have had to change then once already so producing a bit of fluid which hopefully will settle. They remind me of the Tupperware cookie decorator where you squash them down to get the stuff out.



Those I'm friends with on Facebook are already aware of the ninja situation on my legs! Hiiiyyaahh!!  Blood pressure cuff around my calf as well (obviously with nodes removed we are unable to use my arm. 


Honestly... I'm uncomfortable, tired, the pain is manageable but just awkward. It's going to take some time to get use to these expanders. 

On the plus I just had a lovely parcel delivered from Zonta and Buderim cancer group. 

Zonta has given me pillows for my arms, a drain holder and a DVD. 

Funky little drain bag

The breast cancer group parcel has some fluffy socks, and some little snacks and drink which I'm excited about. One the bag it can in is this quote which just sums up everything beautifully.... "Once you choose hope, anything is possible."



Thank you all for your support and well wishes. The hard bits done.... Now it's just the uncomfortable road for a few weeks! Time to go back to sleep for me! 
XoXox



Sunday, February 23, 2014

One more day....


Just one more day to get through now. My surgery is on early Tuesday morning. I am very blessed to have spent today with my beautiful family. I was completely spoilt with lunch, tea, wine and even a healing lamp! We listened to a beautiful jazz band with an amazing singer Lizzie O'keefe who you need to check out! Brindy had a great time dancing and having lunch with us listening to the music, followed by giving high fives to everyone on the way out! Gorgeous girl! 

I am lucky to spend tomorrow with my beautiful work family who I am so lucky to have in my life. 

Rod will take over for a little while on the blog so keep watching his updates. Please follow my blog and keep sharing. The support is overwhelming but even more importantly I am learning of so many others this blog is helping. I'm glad I can be a part of your journey. 

My mum told me too make sure I don't put up photos I will regret letting thousands see.... Within reason... This is what it's sadly all about. Say goodbye to the ladies! BRING ON TUESDAY!! 

 







And one taken tonight! Bye ladies. 



Tam

XoXox 

Friday, February 21, 2014

Getting Organised

So today is my last full day at home before surgery. Tomorrow will be spent relaxing and horse riding with my family, Monday I am spending the day with my work family (purely as distraction!!), but today is about getting the house sorted and tidy, grooming the dogs, packing my bags, and sorting out any last minute bits and pieces.

Pretty much have my bag sorted already this morning. Numerous pairs of button up pajamas, travel pillows for under my arms, comfy pants, a couple of button up tops, surgical bras (not that I'll need them yet), drain belts, and of course a puzzle book! New make up, tooth brush and moisturiser bought. 

Sadly my good pair of havi's died yesterday so I do need to pick up a new pair today. I need to also find my kindle charger!!

Have I forgotten anything???

Something else which I hadn't prepared properly for is explaining to Brindy about me being in hospital and not being able to lift her up for a while. Whilst looking for new shoes I am going to have a look for a book or two about hospital. We will also have some bandages for her 'baby Hayley' to help try to explain. Any other advice for explaining hospitals to a two year old?


Tam
Xoxo


Monday, February 17, 2014

ANXIETY

I mentioned when I started this blog that I would write about all my experiences on this journey. That means the good, the bad, and the sleep deprived.

No matter the amount of yoga, meditation, exercise, nor the twenty packets of calming tea, chamomile, herbal anxiety sprays, rescue remedy etc that I use... I can't sleep. This time next week I will be on my way to Sunshine Coast Private hospital. Although I have come to terms with my decision to have a double mastectomy and I am at peace with this decision, it doesn't stop the anxiety that comes with it. This isn't my first surgery, and working in the medical industry have also seen a number of surgeries as well. But there is always that "What if". I am nervous about the entire experience. I am nervous about waking up with no breast tissue and what that is going to look like. I am nervous about the pain of the expanders. I am most nervous about the result of histology when they hookwire my (newly named) fishy blob. The result of which determines if when I wake up I proceed with further needed treatments.

I have had to seek medical help to assist me in sleeping. Last night although I kept waking up the difference was I fell back to sleep very quickly. Didn't even hear Brindy Bear wake up this morning (sorry Rod!).

Sadly I am not coping well with expressing my anxiety over this matter. I have been brought up (like my beautiful sisters) to be strong. The three Allcorn girls put on a brave face, suck it up (for a better expression), and get on with it! My sister showed so much strength and determination throughout her breast cancer  journey, and my older sister has stood by and watched both of us go through trauma and stood by supporting us the best she can. However to actually talk about what is going on in emotional terms is not our strong point!! Hence one of the reasons this blog was started. Prior to this blog I was keeping too much inside. Poor Rod experienced an explosion of emotion when I just couldn't take it any more and I blurted out everything going through my head in a mess of tears. In fact I asked Rod to read everything above this paragraph and he told me I was only scratching the surface and to go back and write more!

My biggest anxiety is how I am going to look. I understand the scars, I have seen so many photos of post op, I have seen the implants and expanders, but it will be so different when I see them on myself. There are words from my surgeon that keep repeating themselves... "You are going from having amazing boobs, too good boobs". This is a hard visualisation for me to accept. I am dreading the day we take the bandages off and I see myself in the mirror. I know Rod will always love me and be here for me but will I still be attractive to him also plays my mind.

I have seen first hand the problems that can occur with implants and having repeated surgeries to fix implants scares me. On this note I am scared about future surgeries regarding these implants. At my age it is a guarantee that they will have to be replaced down the track.

The unknown of if my daughter has the gene as well haunts me. I can only hope that by the time she is 18 and if she chooses to have the test done, they have a simpler method for dealing with this.


The one topic that I have not mentioned yet is how I feel at this exact moment in time about my breasts. I am at a point where I do not want to look at myself in the mirror. I do not want to acknowledge my breasts in away way. I am even in a scary frame of mind that makes me not want to be intimate at fear of knowing I will not feel those sensations post surgery. You'd think I would be trying to make the most of it whilst I still had them??


Ok... so this is clearly for me the hardest blog post I have written. It is now late afternoon. Due to my inability to effectively communicate my emotions on this subject, this blog has taken me literally all day to write. I do hope that this insight into how I am coping does help others. Both people who are also going through this and to those trying to understand and appreciate this journey.

With over 2500 views on the blog I am so overwhelmed with the support. Please keep sharing as if I can help just one person then this process will be worth it.

I'd love to hear your comments and stories.

Tam xoxox



One week till surgery













Saturday, February 15, 2014

10 days till surgery… I meet Zeus….

What an incredible day. Throughout this process of finding out and dealing with the breast cancer gene I have had many ups and down. Some decisions have been simple, such as … um… ok… so I can't think of any right now that have been simple!! The overwhelming majoring has just felt like heart break after heart break. The biggest of which is coming to terms with the fact that in just over a week now, I will have no breast tissue and two very large, very ugly scars. (And future tattoo nipples - I'm such a rebel!).  I have come to look at part of this surgery as not only life saving for myself, but also in a grieving process as well. 

Remember when you were in school and sang those songs "I must, I must, I must increase my bust!" and of course any song with boob reference… "My milkshake brings all the boys to the yard" and "My boobs, my boobs, my boobs are OK!". Ops… been here singing the milkshake song and dancing around for the last five mins! Lost my focus for a moment there! Anyways… It was always such a big thing (and still is for most women) to have an impressive chest size. Why would so many women undergo cosmetic breast enhancements if it wasn't? I even remember looking in the mirror when I was just developing being so excited! Not to mention I had more of a chest then anyone else in the 7th grade at that stage! YEW! So to me this process certainly has not been an easy solution to arrive at. It is knowing that after this surgery I will have a continued life without a high risk of cancer trying to steal my amazing partner, my daughter, and my incredible family and friends away from me. 

So… This brings us to today. As a 'farewell' to my boobs, I wanted portraits taken. Not confronting "well here are the last photos of my boobs" but artistic reflections of this point in time PRIOR to having such drastic surgery. This is part of MY grieving process. Today was about confronting my fears head on knowing that whatever happens over the next couple of weeks/months I will still be hear and standing. 

In step the AMAZING BAMBI WIXON!! Not only a fantastic, creative and loving photographer but someone who was so inspired by what lays ahead for me, took everything to the next level. As well as my artistic nude style shots, Bambi has created the idea of before, during and after my surgeries. At this stage all I can tell you is that it involves a nest, eggs, and a HUGE BLOODY SNAKE!!! I have my complete trust and faith in Bambi and letting her go crazy nuts on whatever ideas spring into her head!

Bambi encouraged me into the studio by saying the snake is only a metre long and will have just eaten so will be very subdued and quiet. The first thing essentially that the lovely snake handler Brett tells me is that the snake "Zeus" is 8 ft long and hasn't eaten for a number of weeks so he is lovely and shiny…. uuummmm… RUN!!!! I had a quick briefing on trying to keep my heart rate slow and what happens if he bites! lol Thanks Bambi!

The lovely Tiffany stood beside me incase I needed a hand moving the Zeus… which I was pretty much paralysed so needed much help!!! 

Bambi: "Tam just bring your left arm in a little"
* I make a pathetic attempt to move *
Bambi: "oh… you can't… oh well…"

By the way, sorry for the amount of boob you had to see Tiffany!!  I managed to not get bitten but stay relaxed (except for the nervous sweat pouring off me!). Zeus truly was a beautiful snake who, although I can't say I enjoyed the experience, was pretty amazing and thoroughly ensured I confronted my fears head on!

We can't wait to see the finished product (which does involve more photos after my surgery) but for now we do have some behind the scenes images for you! Note the strategically placed Mr Zeus!

Thank you to Brett and Tiffany for bringing in Zeus and helping me throughout the shoot, for Kim who made my make up and hair look incredible! and of course to Bambi for making me feel so comfortable and helping me on this scary journey. xoxo






Hair and make up time!



 Bambi having a cuddle with Zeus.




A very strategically held snake and my screaming on the inside face!!!!! (And of course my saviour Tiffany!)



10 days till surgery

Thursday, February 13, 2014

I LUV pressies!!

Recieved some amazing gifts in the mail today! 

Travel pillows for under my arms from the Zonta club. 

A berlei 'my care kit' with post surgical bras, singlets and soft foam bra inserts.

Some AMAZING smelling tea which Rod is not aloud to have!

And a 'my journey' pack from the breast cancer network Australia! 

Thank you Bess!!!!!!!!





This gave me a big giggles when I saw it... Will need to use this one a lot ... 



There are so many resources out there and some great information however I am yet to find a "so your about to chop your boobs off by choice..." pack. If you know of one let me know!!! 

Thank you everyone for your support. Im so glad I have so many who are helping me in this daunting journey. I'm learning already that of the 750+ views of my blog that some are about to go have their genetic tests / recently found out they are positive. I do hope you find everything I'm posting here in the lead up to my surgeries helpful. I'm attempting to be as honest as I can in every aspect. 

Tam

XoXox

Wednesday, February 12, 2014

BRWHAT???

Lets take a few minutes to learn a little more about the BRCA1.

Now more commonly referred to as the Angelina Jolie gene, the BRCA1 gene is sadly now a part of my life. The Breast Cancer network Australia comments that 90 to 95% of breast cancers have absolutely nothing to do with family history. Purely by cruel fate, breast cancer in majority of case is just by chance. This does imply that it is coincidence that several people in one family have developed cancer... However maybe there is a further gene that just has not been recognised yet???

The second occurrence can be related to environmental factors. There are correlations between families living in similar environments with similar diets and lifestyles, that have been linked with breast cancer.

The final occurence is the 5 to 10% of breast cancers that occur from a gene fault, or gene mutation, and are passed down through family lines. Both BRCA1 and BRCA2 gene mutations are known to be associated with an increased risk of developing both breast and ovarian cancer, with BRCA1 being marginally more aggressive and higher occurrence at younger ages. Men can also be a carrier of this gene.

As mentioned previously in this blog, having this gene does not mean that I have cancer. It is only linked with an increased risk.

In Australia the process of testing is fairly straight forward. You do have to be over the age of 18. Generally your process will start (and continue) with the help of a genetic councillor. You will be given all of the information you need to make in an informed choice about whether to go ahead with testing or not. It's sadly not just a matter of "Ok I have the gene now I can ignore it". The knowledge you have this gene will constantly plague you so you have to be ready to accept that if the test comes back positive how you are going to handle it. There is also the matter of life insurance... Important to consider BEFORE having your test.

The actually diagnosis is simple. Blood is sent off and a couple of days later you will receive a phone call to come back in and discuss the results with your councillor. I can only hope that it is negative for you.

The good news (if any) of having a positive test will enable your family to also have the test. For me, my sister and mother having a positive test prior to mine actually enabled my testing to be medicare covered. I am unsure of the costs involved if you do not have an associated positive gene already?

So.... the test has just come back positive. You will be sent off to two specialists. One to deal with the ovaries, the other the boobs. I am so incredibly blessed to have the two most amazing surgeons! I have a history already gyn wise and before I had a chance to ring and make an appointment my gynacologist was calling ME to see if I was ok after he heard the news. My breast surgeon as well is the most incredible women who has taken my views and opinions into consideration as well as gently encouraging what she thought was the right path. As this is such a personal choice and only one in which you can make on your own, they provided me with the information I needed and only on my cues have proceeded with further plans for surgery.

Off I went after initial consultations with my surgeons for blood tests, MRI's and ultrasounds (both breast and gynie) every 6 months for monitoring.

There is now a lot of information available on the net if you are after any more information. The amazing FORCE group is here in australia with facebook pages and yearly conferences. There are also the Breast Cancer Foundation and the Breast Cancer Network Australia groups who have plenty of information also. Talk to your GP and of course keep up to date with your mammos/ultrasounds.

 If you are seriously considering having this test I wish you all the best of luck.


12 Days to go!








Tuesday, February 11, 2014

We love shopping!

I have been told that post op I will struggle to lift my arms for a number of weeks as well as wearing very fashionable drains. So button up shirts are the way to go!! However the only real button up shirts I have are my uniform... Not too sure how Cooloola Radiology feels about me staining my shirts with blood and drains etc... So decided to buy some new shirts! Hurray! 

A patient actually informed me about an 80% off sale at Big W so off I went. Came home with numerous button up shirts and even some comfy pants!

Also picked up a nude coloured bra and knickers... Special purpose for this weekend (more revealed on Saturday... And by more... I mean MUCH more!!). See you Saturday Bambi Wixon ;-)


Monday, February 10, 2014

Why have a double mastectomy at 27 when you do not have cancer?

The ultimate reality is… I don't have cancer… yet. My mother who has the same gene has not had breast cancer. She has been blessed to be in that small percentage of us who do have this gene to not be diagnosed. My sister on the other hand, my aunt, grandparents… in-fact we can trace breast cancer back 6 generations in our family. My 87% percent chance is still a 13% chance of not ever getting any form of cancer in my breasts. So why have surgery to remove healthy breasts???

I would like to introduce to you my little friends who have decided to join me in the last 24 months.
This is my Invisible Blob… Only detected on MRI but appears stable in over the past 12 months. Somewhere in the ultrasound image below is the lesion on my right breast…




This is my second friend… I call this one Weird Blob. This very hard to find on ultrasound lesion proves after a fine needle aspiration and a core biopsy to be a benign hamartoma, or a disorganised collection on tissue mass. Benign, although steadily growing in size to now make me not wear an under wire bra as it causes too much discomfort.




And this fine fellow… is my latest addition to the left breast (Yet to be officially named - suggestions please!). Only detected on my last MRI and ultrasound mid January 2014. This lesion has not previously been seen so has developed in the last 5 months. Immediate core biopsy and urgent visits to my surgeon. Unfortunately, being a sonographer has its disadvantages. This lesion does have many features of a malignant mass. The two projections from the side, vascularity, almost as tall as it is wide. At this stage this lesion is essentially inconclusive on biopsy… however this is also the reason why now is the time to have my breasts removed.




I will be undergoing a hook wire on this lesion to determine the need for further treatment (erh… chemo etc…). However for now its just a matter of GET THE THING OUT!

Even if these lesions come back as benign (which they will!!) this is why I am having surgery. Within two years I have had enough needles stuck into my boobs that if we left them there I may look more like an echidna!  I really do not wish to continue down this path. We need to sort these out prior to a positive biopsy. 

Thank you to everyone for your kind words of support once I had shared the first post. I know I have a lot of support and some truly beautiful friends and family. xox


Sunday, February 9, 2014

16 Days till we say GOODBYE to the LADIES!

And the count down is on... Well technically the count down had begun when my sister was diagnosed invasive ductal carcinoma. We are now 16 days out till we say goodbye to the ladies, the girls, the puppies, the bikini stuffers, the fun bags, the bosoms... what ever you call them... My boobs are being removed. Hurry!! A boob job that will be covered by private health insurance/medicare!!!!

At first this does look like the perfect opportunity to go up a size. Jokingly this was Rod's first question to my surgeon as well! He was stoked! He couldn't wait to sit with a cigar and "admire" adult magazines playing the circle game.. you know that game where you circle with a big red text in all the things you would love to have and wish someone would buy them for you?? (Sorry for sharing that Rod!). We quickly learnt this wasn't exactly how it was going to be.

I am BRCA1. I have the breast and ovarian cancer gene. As my sister pointed out... we have the same genes as Angelina Jolie... Can't you tell?? I have an 87% chance of getting breast cancer and a slightly smaller chance of ovarian cancer. The best method of reducing these numbers at my age is to literally take out all of the tissue in the breast and to remove the ovaries. The ovaries we will get to a later date. For now its the breast tissue issue.
A double mastectomy involves making a small incision from the lateral or outmost aspect of my breast to the nipple. I write small incision without really thinking about it... In fact, have a look down at your chest. Imagine a large line that extends across and circles the nipple. This isn't small... this incision is huge. I have opted to have ALL tissue removed... this means my nipples as well. In my opinion there is no point going through all of this and leaving a huge chunk of tissue sitting on my chest as a ticking time bomb! This obviously is a very personal choice. Many people do decide to keep their nipples. I have been previously told that the familiarity of seeing your own nipples there makes this process easier for some. There is no guarantee that there will be any feeling in the nipples either. In fact most are left with small either permanently erect or one erect and the other not which presents issues of its own!

Blue surgical lines illustrated above.


After the tissue is removed I have made the choice to have spaces or expanders inserted. This I have been informed will be a very uncomfortable experience however worth every bit in the long run. Pretty much the expanders allow the skin layer and surrounding muscles to settle and relax prior to having reconstructive surgery. This in theory will lead to a better and more natural looking result. After approximately 4 to 5 weeks we will start to slowly inflate my temporary friends till I am happy with the size. This entire process will take anywhere between 7 weeks to 6 months depending on how well my body copes with this process.

Following this I will then go under again for silicon implants to be inserted and at a later date tattoo nipples to be done. For those who know me well I am terrified of needles so this part will be interesting!!!!
If you haven't already guessed... this will not look like a normal breast enhancement. I will have large scars, tattoos for nipples and literally skin over the top of an implant. Breast implants in the normal situation are implants underneath already healthy breast TISSUE. This layer of tissue helps with the "normal" appearance of a breast and the implants are generally inserted from the base of the breast upwards - thus resulting in no visible scars. A number of ladies who have previously had the surgery I am about to have, have pointed out that the above mentioned surgery to be only enhancement... Our surgeries really do result in FAKE BOOBS, or more loving known to us as our foobs.

I have made the choice to document this process as recommended to me by a friend. These surgeries have been a difficult decision to make not only for me but also for my family. This will be a journal of everything I will be going through over the next couple of months including photos and images. I have the hope that maybe this might help someone else in the future with their decisions regarding having this gene.

This news will be coming as a shock to many as well as only my closest family and friends know what I am about to go through. Please call me or message me if you need. Please feel free to comment and share this blog.

Tam xox