1186048_514272925321441_2126170653_nAlot has happened since my last blog, but at the same time, not much has happened at all.  I have had to say goodbye (for now) to some of my beautiful high risk Pink Sisters FAR TOO SOON! It makes the reality of it all sink in.  As I am fast approaching 30, with less than 3 months left, have, as yet, got no children, still having gynae issues, still waiting for my chest to get fixed, needing to start preparing for a full hystorectomy with oophorectomy, and coming into the next stage  of higher risk for Gynae cancer/s (being 30 without any children). I am in a fairly new relationship with someone that I have known for years, whom has been there to talk to through my surigcal and cancer preventative surgeries thus far… So much to take in! Trying to rationalise, organise and prioritise is such a hard task, especially being in the Public health system, and having to wait for surgery in a hospital interstate, waiting for one of the best surgeons (and the only one that can fix the last surgeons terrible disfiguring f*** up!) is becoming alot more stressful than I would like. I have now been on the waiting list to have my breast reconstruction redone and the deformities repaired for 219 days now, I still have approximately 200+ to go, as the waiting list is becoming increasingly larger. I have been trying for many months to get my surgery moved for a Category 3, to a Category 2, so that I can try and plan my life, in the timeframe that I havebeen given for my next type of surgery. They have discovered that there are new polyps and fybroids in my uterus, after having already had multiple removed back in April 2011. I also have cysts in my ovaries and polyps in my fallopian tubes. They have tried to treat my other gynae complications with the pill, but that has again increased my risk of gynae cancers, being that I already have coplications, and again that dreaded family history.  With this comes a whole new dilemma and series of life altering decisions that need to be made. So, back to my redo-over of my breast reconstruction and repair of my chest deformities caused from my last surgeons inexperience.  I am getting it all fixed, and post muscular, with Alloderm “tissue scaffolding” (like an intrnal bra) done, with fat grafts to help with the shape and fill in the gaps (luckily I have LOTS of donor fat he can use, hehe).  It will b a longer process to heal than my implant echxange surgery,  being that I will probably be healing for more than 6 weeks (at a minimum).  Then there is the WAITING for this surgery, the waiting list is sooo long, and I still have no idea on when it will be, they have said, DEFINITELY NOT before Easter 2014… … Being that I hav had babies yet, and cannot have any BEFORE my breast reconstruction surgery, or else there willbe delays, the fact that I will be interstate away from family and friends and my personal support network for 6 weeks – 3 months, my partner works in QLD, so he will have to stay here.  It is definitely not practical to have a baby before hand. I will not be able to look after my own baby, nor would I leave a new baby with anyone else (I wouldn’t be able to cope emotionally and will miss out on so much, especially if It is going to be my only baby). The fact that I will have to have a ceasarian, due to my Ehlers-Danlos Syndrome, and the associated and relevant waiting times for that…Then there are the other parts of planning a family, CAN I fall pregnant on my own, will I need fertility treatment, what are the risks to my health and cancer risk increases WITH the fertility treatments, the counselling, the preparing, the appointments and then still the stress of being high risk. A baby before my breast reconstrustion is definitely not a viable option for me. Besides, I would Ideally like to be married before I have a baby, and I would like to be able to wear my dream dress (which, I currently have extreme difficulties wearing normal clothes at the moment, given the level of my chest deformity, and my inability to wear prosthesis due to position, shape and deformity eetc of my chest). So that in itself is yet more to take in. Then there is this “Timeline” of when I can have a baby before my girl gizzards get removed. Ideally, they said 3 years, but at most, I have 5 years until I have the surgery. There is all the above factors to consider and to try to fit in first, then there is my partner I need to think of as well.  How he feels about it all. Even though he knew about all of this going into the relationship, the reality (especially in a newish relationship) of it all, and the fact that, if we don’t act on it, and just wait… We couldmiss out on the opportunity altogether. I honestly don’t think I could have a surrogate, nor could I adopt (without having my own child first).  Though, the fact that I have Ehlers-Danlos Syndrome, sureries and health would make adoption exceptionally difficult, if not impossible, as there are VERY strict adoption guidlines. Every one says, “Take things one day at a time,” and I am, that I have no choice in. But this whole life changing and altering, step by step cancer preventative surgeries and options, mixed with the whole cell changing- better get in quick, life changing leg of this rollercoaster has been happening since I was 25 (the lead up to it from the age of 10). Sometimes I feel selfish for having my mastectomy, and planning my hystorectomy and oophoractomy, especially watching so many beautiful people that are and have, or tried to fight this monster… Some so young, with young families, some before they get the chance to hav famlies, and some that don’t know how long, or what next… But I know that not a single one have, or would ever wish the “C” word on anybody else. I can’t take it away, I can’t fix it and I can’t change it… But I can change it for me, I caninvest my time and efforts and experince into helping others… But for now, I am dealing with my demons and struggles the best way I know how. I pray for a cure, promote Breast Cancer and Feminine Cancer awareness, I love, I communicate, and I support others where I can. But sometimes, we all need to be a little selfish (though not completely), and remember, that WE, as individuals are important to. Our lives matter to us, and to our loved ones. We need to all walk our own paths and at the moment, I am still trying to blueprint “The MasterDesign of the Tattiebug” Sending Lots of Love and Positive Energy to all, and Healing Energy to those that need it! Love and Light xoxo

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IMAGINE THIS!… You are 10 years old, and your nanna gets diagnosed with Breast Cancer (BC). She is under 60 and losing your pop to airway cancer that had metastised just a couple of years before (different side of family I know).

I had lost an uncle to reanal cancer a few years before also,he was closely related to my nanna (he brother), one of my aunts had passed from cancer also (Melanoma, before I was born).

Then  you are watching your nanna fight the disease, though she won this fight, she was told that it was hormone responsive. You are taught the importance of breast health, and family of breast cancer, as nan hada significant number of Aunts and 1st and 2nd Cousins that had all fought and lost the disease.But by Beautiful Nanna, my world fought the disease, and was on of the lucky ones to beat it. Only a short time later her cancer came back, this time in her uterus, again,hormone related. She was lucky the cancer was contained, only because of the medication temoxifan (for hormone responsive breast cancers), which clumped it together and prevented it from becoming invasive.

Then imagine helping nurse your nanna, look after her, love her and keep he company and positive, giving her something to fight for. I still have my Nanna with me to this day, but it wasn’t withougha fight.

Skip another 6 months, then an Aunty (maternal side) gets diagnosed with BC, you are still young, and then a year later another 2 get diagnosed with BC within a short time, and then another one as well as an uncle diagnosed and losing fight to metasticises lung cancer, and one of those Aunties, Allunder 60 (some under 50). You watch them all struggle, fight, you love and support them, and some you have to say goodbye to, You are still in your a constand reminder of thteens, then in early 20’s, The cancer is still there, haunting, goading you…

All whe while, on your dads side of the family, you have an uncle that had lost  a very brief and agressive fight to bowel cancer, and your dads ONLY sister gets diagnosed with breast cancer. As if my Mum/ Nan’s side of the family wasn’t enough, It’s on the other side of the family too. You have lost soooo many close loved ones, not to mention there is a cousin that at 29 lost her 11 year  battle to bowel cancer on your mums side, along with other extended cousins as well as more aunts and uncles.

Now, on the other end, back to the tender age of 10, you suffer gynae issues. You go to many drs and no help because of cancer risk, then have surgeries, miss out of going to activities and lack the energy to do stuff as you are heamorraging profusely for years, with no end in sight. You see countless Doctors and surgeons as well as see all alternative and holistic medicine avenues, changeyour diet and lifestyle, you keep fit and healthy.. nothing works…

Then from 23 you start finding lumps in your breasts. Having multiple tests and scans,  over and over. Gynae issues still going, at 27 getting told you need to decide to go on an oestrogen pill and pretty much open the door to breast cancer, or have a hystorectomy by the age of 30. Still finding lumps, still having tests. Then getting told you have a suspicious lump, the stress you had with other lumps, was nothing comapred to this. The waiting for the hospital to get back, then more tests. Being told there is a significant lesion, but noone wants to operate as you are 26/27 with no kids.

             “What if you want to breastfeed” they say…. “What if I just want to live and be able to be a mother” I respond simply and swiftly…

Then the back and forth fight, changing doctors, not knowing your options, living in constant fear of not just cancer, but the unknown. Then through all this, your Grandma on your dads side gets diagnosed with Terminal BC, mets in lungs and ovaries, 

Imagine waiting your turn for cancer.  My Grandma was diagnosed After you make the decision to have you breasts removed… This, a reinforcement that you are making the right decision.

I am now 15 months post prophylatctiv bilateral mastectomy, my histology results came back at advance stages of cellular mutation, Apochrine metaplacia, atypical ductal and lobular hyperplacia too. I was only days, weeks, or months away from a Breast cancer diagnosis.
I am 29, single, no children still, still going through complications post mastectomy, It isn’t a fun journey, and is DEFINITELY not an easy one, I am still going through the angst ofit all, as I have had andam having a few bad surgical complications. It is NOT a “Free Boob Job” and my breasts will never be the same again, they will no longer be an erogenous zone, I will NEVER be able to breastfeed my children if and whenI have them.  But I do not regret a single thing.
BTW, I don’t have a known genetic mutation, but that doesn’t mean I don’t have one, Scientists just have not discovered what ours is yet.  

So please, before you demonise me,and people like me. Look at the WHOLE story, not just the part you canbase your opinions on. 

Oh and YES, I will be havingand Oophorectomy (Removal of Ovaries) and/or Hystorectomy (Removal of Womb) at some stage, after I have had my family.ImageImageImage