Angelina; Helping Previvors find their place

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So it appears that I have more in common with Angelina Jolie than I ever thought possible. No, it’s not a gaggle of children, adopted from the far corners of the world. We’re both women who have voluntarily decided to undergo mastectomies in order to prolong our lives and reduce our risks of breast cancer. And like Ange, I also have a (better looking) version of Brad Pitt in my rock, Mr F.

Her letter to the New York Times about her decision to undergo a prophylactic mastectomy following her BRCA1 diagnosis is beautifully written. I applaud her for using her celebrity status to raise awareness and understanding of what it means to be a Previvor and the choices we have available. http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?smid=tw-share&_r=2&

Finding our place

Part of the reason I think that Angelina’s sharing her experience with the world is so important is because as Previvors, we’re a bit of a funny bunch that don’t neatly fit anywhere. We’ve not actually had cancer, but at the same time, face a different reality and decisions from your genetically favoured, Josephine Bloggs.

Not cancer enough

When people first found out about my decision to get my boobs chopped off many, very kind and generous friends offered to put me in touch with people they knew who had been diagnosed with cancer and had undergone a mastectomy.  I found this generous offer a difficult one to reply to, or explain.

Most Previvors will be too familiar with the heartbreaking effects of cancer and many will have lost more than one family member to the disease. But we haven’t actually had cancer. We’re the lucky ones who were given a choice and could take a part in somewhat guiding our fate. Many of us have no idea what cancer personally feels like and hopefully, if we follow the course of continued expulsion (boobs, followed by ovaries or Fallopian tubes), never will.  At low points, when things get tough during this experience, I often feel ashamed that this fact is not front of mind.

Our surgery follows a similar course, but aesthetically, physically and mentally, a Previvor’s journey is much more straightforward. We don’t have to endure chemo or radio-therapy and as a result, things are much easier.  So for me at the time, talking to a cancer survivor to help me come to terms with my experience felt a little insensitive.

Not quite healthy enough

For many of us, we’re not sick at all and could be living extremely healthy lives. However, we don’t fit into the genetically favoured crew either.

Imagine waking up each morning with the mindset that one day you’ll get cancer. Not maybe, but you will definitely get cancer? I’m not saying statistically this is the case, but there is a really high probability that you will and for me, mentally, it was definitely going happen.

Many Previvors have had to face their mortality from a very young age. I avoided mine throughout my twenties, but I was always running from it. For those who do face up to it, how young is too young to put the information you have been blessed with to good use?

You see, we have been given a gift. The gift of information and more fool us if we don’t use that information responsibly. If we are diagnosed with carrying a BRCA mutation and continue to smoke and drink too much alcohol, are we complete idiots? Should we never take the contraceptive pill because we know the risks? And if we don’t decide to get our boobs chopped off and we get breast cancer, is it our fault for waiting too long and not acting?

On the subject of breeding, am I selfish for wanting to reproduce the normal way and just hope for the best? Will I be able to forgive myself if I pass my faulty gene to my daughter who has to undergo a mastectomy in her twenties?  Will I be able to watch her make decisions about freezing her eggs just in case she doesn’t meet Mr Right before she has to have her ovaries removed?

I’m not playing my small violin and complaining about it, it’s just, we don’t quite fit here either.

The Previvor crew.

Thank goodness for my crew, the Previvors. Like any group of people, we’re a disparate bunch spread all over the world and our stories are all different.  Some women are happy to share their experience along with their post-op booby pictures, and others aren’t. We’re all at different stages in our lives and being BRCA positive has different implications for each of us. What we do share is a huge level of compassion and a willingness to be there for each other. We are all, in our own ways, pulling together to form a strong community. To be there for each other and help others understand us too.

So thank you Angelina, for helping more women like us find our crew and know they are not alone. As well as helping the rest of the world understand where we fit too.

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At least you’ll get new tits!

used-boobs-for-sale

I read this article the other day from one of my new previvor friend’s web sites entitled ‘What Not to Say to a Previvor. http://www.mydestiny-us.com/what-not-to-say-to-a-previvor.html

Before I go on, a Previvor is essentially me. Someone who minimises their risk of getting cancer by making pretty bold choices, like getting their boobs chopped off.  In my own small bubble I may be unique, but there are loads of us and they are pretty amazing.

Anyway, I digress. I found this article and boy I wish I’d had it before my op.

Some of you reading this will have been in the situation where you heard what myself, or someone you know was about to do and…. you didn’t have a clue what to say. I get it. I like and need to fill spaces myself. Silence is an opportunity to talk.

And for those of you who have told others about your decision? It’s tough. I had a practiced monologue that accompanied my informing people about my decision to have a prophylactic mastectomy. It laid down the facts about my testing, then what BRCA meant and what my risk factors were (including statistics) and then, and only then did I tell people I was getting my boobs chopped off.

As you’ll see in the article, there are many things that people say, and you may have heard or used some yourself. The main one I got early on was what Lisa lists as ‘saying nothing at all’. I call this, ‘the face!’ It’s ‘the face’ that verbally says nothing but visibly says….”I can’t comprehend what on earth you are doing or why and wait, you don’t actually have cancer and hang on, I feel incredibly uncomfortable now, I wish you hadn’t told me this and … oh, swallow me whole.”

If this sounds familiar, I do describe this with a heap of sympathy and empathy and no judgement.

The other point from the article that most resonates with me, is ‘at least you’ll get a new pair of tits’ (or something more eloquently put).

Now I’m a glass half full person and yes, I will get a new, shiny pair of bazookas, but this statement does grate a little. And it’s not as bad for me as it might be for some women. I’ve never had boobs big enough to define me or my body image. However for some people their sense of self is very much wrapped up in their breasts. So this statement is probably the worst thing you can say for a number of reasons:

–          The other day me and Mr F were looking pictures of non-mastectomy, augmented breasts and wowsers, they are so pretty. They appear symmetrical and they are a lovely shape and I swear the nipples point up to where a guy’s eyeline will naturally be, winking like diamonds. You see, real breasts act like bubble wrap for implants. They cushion them, they keep them warm, they allow everything to jiggle a normal amount, and they make the process a whole lot easier.

–          I would pay a significantly smaller amount of money for a normal boob job.

–          I wouldn’t worry that my nipples may drop off or may not make it.

–          I wouldn’t have drains attached to my body for weeks trying to make sure that the empty cavity where my breast was is fully healed and unlikely to get infected.

–          There would be less chance of infection and my body rejecting an implant. I am in a good place now, but this could still happen. If that was the case I’d have to walk around with no boob/s until my body was significantly healed enough to start all over again.

–          For many women scar tissue may be an issue which means the final product will look less than perfect.

–          I would be up and running a whole lot quicker as someone probably wouldn’t have cut open my pectoral muscle and chucked some balloons underneath there, prohibiting my arm movement.

–          I might still be able to breast feed.

–          However good the result, they will look like false boobs that are so firm, no man should ever attempt moterboating them for risk of brain injury.

So what about the partner of a woman who is prophylactically getting her boobs off? Well I’m afraid the same also applies for similar reasons to the above, alongside the following:

–          This is going to be a really tough time for the bloke. I’m sure he’d be OK with his partner not having new boobs in order to avoid the worry, the stress, her moods, the upheaval to daily life etc.

–          Regardless of how shiny and new they are, emotionally his partner may struggle to accept these new boobs.

–          He may get really weirded out by the new bazookas and not find her as sexy as he used to.

So look, I think you get the picture.

However, as I was saying, I get it, you need to say something. So, here are some things you can say when someone else tells you similar news that makes you feel equally as uncomfortable (p.s. this may just be my preference so apologies if you offend someone as a result of my advice):

–          Wow, you’re actively embracing your risk of getting cancer and are and taking life by the balls, telling it to look out! (feel free to paraphrase).

–          I know you’d rather have your own boobs and not have to go through this, but I guess yours will never ever sag ever again? (For me this one’s OK. One of my boobs, small as it was, had started to look like a foot coming from my chest)

–          I have no idea what you’re going through. Good luck man, I’m here if you need me.

Or simply, ask questions.  I love questions as it’s all about me and gives me a chance to spout off all the new information about BRCA, hereditary cancer and prophylactic mastectomies that I have worked so hard to acquire.

Good luck with social minefield. Hope this helps? x

social minefield

 

 

One Down One to Go: Expulsion of a Post-Mastectomy Drain Revealed

Well someone or something has to get out of here at some point. And if it can’t be me, it may as well be my right drain.

donald-trump-youre-fired

After Smeg-Gate yesterday, my fluid secretion on my right-side decreased a lot. Despite 4 Drs telling me it would come out tomorrow, the big honcho, plastic surgeon boss over-ruled them all and ordered it to be expelled immediately!

A couple of things you should know before I go on. Drain-Gate is still in full swing and despite the smeg from my left side becoming much paler in colour, the fluid levels are still pretty high. Even higher than yesterday. So I’m still quite upset about this as it means, as my Drs bugger off for Easter (I don’t know if they all are yet but I reckon they will), I am definitely here until at least Monday, maybe even Tuesday! 12 days! I wouldn’t spend that long on holiday in Port Douglas and I really like that place.

The other thing I need to warn you about is, what you are about to see is pretty gross. I’m not going to go on about it for ages, but the following pictures may upset you,especially if you are currently devouring an Easter Egg. You have been warned.

Expulsion of a Post-Mastectomy Drain Revealed

Low fluid levels… check. Hurrah.

Drain

Empty suction ball…check. Gross but yey!

Bubble

Part of the drain that was very much INSIDE my body – check out the stitch that was attached to my body to see how long it is. It’s about 6 inches. And a real 6 inches gentlemen, thank you very much.

innertube

And here, a little bit blurry, is the hole in my arm-pit where the drain resided. Apparently it closes in 24 hours. I said to my lovely nurse, “a bit like a tongue ring?”. She couldn’t confirm or deny this, and to be honest I’m 33, what do I know about tongue rings?

armpithole

And at the end of all this, I am left with this rather fetching drain bag, currently up for grabs to the highest bidder.

Drainbag