GETTING TESTED FOR THE BRCA MUTATION

Since starting this blog and especially since Angelina’s BRCA mutation and subsequent prophylactic mastectomy hit the news, there has been more interest from friends and family who might be considering being tested.

The process isn’t necessarily complicated, but there are things that I discovered along the way, that you might not read in a manual or that your Dr will tell you. With this in mind I thought it would be a good idea to outline what I did (and should have done) when I got tested for the BRCA mutation.

I will say that this is my experience and my experience in Australia (with a bit of the UK health service thrown in). This is not a definitive guide and I have listed reference points at the bottom of this article where you can go for more information. If any Aussies want to tell me their experiences I will continue to update this post to make sure it’s relevant.

Before you do anything, sort out your admin

Before you think about getting tested it’s worth sorting out certain things you may not have already and may need further down the road.

If you don’t have life insurance, it’s probably a good idea to sort that out before you get tested so a positive result isn’t taken into consideration when calculating your premiums, or working out whether or not they will insure you.

More important than this, GET DECENT HEALTH INSURANCE.  I cannot stress this enough. I had some health insurance, which meant I was somewhat covered when it came to my operation. But my poor level of health insurance affected some of my decisions, including what hospital I could choose and what surgeons were available to me. Also, as a non-permanent Australian resident, as I am, you also need health insurance, otherwise you won’t be eligible for any rebate under the reciprocal Medicare agreement.

You need the health insurance before you get tested otherwise the BRCA mutation or any surgery resulting from a positive result will be seen as a predetermined condition and your insurance company may not cover you.

Know your family history

In order to qualify for testing, you will need to demonstrate why you might be eligible i.e. you have high incidence of cancer in your family. You will be asked this from the start and then time and time again if you do test positive and decide to undergo surgery.

Speak to your family members and find out who in your family has had cancer, what cancer they have had and what age they were diagnosed.

This quiz will help you determine whether you are at high risk, and shows you some of the questions your Drs will be asking to determine whether you are a candidate for testing. They include a family or personal history of breast cancer before the age of 50, incidence in two or more relatives, breast cancer in a male relative, cancer in both breasts or twice in the same breast, breast cancer and Ashkenazi or Eastern European Jewish ancestry and ovarian cancer at any age.

http://www.inheritedrisk.com/inherit-risk-cancer/

If you have not had cancer but think you may be at risk, find out if anyone in your family has tested positive for the mutation and request a copy of their pathology results.

If no one in your family has been tested, but you have surviving relatives who have had cancer, you may want to request that they get tested first. The reason for this is a little complicated but this extract explains why quite succinctly:

Genetic testing for mutations in the ‘cancer protection’ genes is complex. First, the mutation has to be identified in a family member who has or had the cancer.  This is called a mutation search and may take considerable time.

Second, and only if a mutation is found, other family members without cancer can be tested to determine if they have inherited the faulty gene. This is called predictive genetic testing (see Genetics Fact Sheet 21)”

http://www.genetics.edu.au/Information/Genetics-Fact-Sheets/Cancer-Genes-and-Inherited-Predisposition-Overview-Cancer-Genetics-1-FS47/view

My Dr explained it by saying, looking for a gene mutation is like looking for a needle in a haystack. But if someone gives you a map – in the form of your relative’s genetic mutation make-up – it makes it easier to determine an accurate result.

Speak to your Dr

To get the process in motion, I first went to my GP, explained my family history and that I wanted to talk to someone about testing. They referred me to the Hereditary Cancer Clinic in Randwick but your Dr will refer you to the best place for you.

Armed with my family history, my uncle’s pathology results and the name of the clinic where he was tested, the Drs at the Hereditary Cancer Clinic were able to put the wheels in motion.

Before you sign a piece of paper and give your blood to be tested, the clinic will ensure you have talked to a genetic counsellor.  They aren’t like normal counsellor in any way shape or form.  Their job is to ensure you have enough information about testing, what a positive result means for your risk, its implications and the options that are available if you do test positive.

Then when you are sure you sign a piece of paper and the testing process begins.

It takes about a month (if not less) to get the results. Mine was longer as they were getting my uncle’s blood from the UK and the NHS didn’t make this very easy for them.

Get some support

As a lot of you know I am a stubborn person who is determined to do everything by myself. Looking back I wish I’d sorted my support system a lot sooner. I have great friends, but you need people who get it. It didn’t help for me that I broke up with my boyfriend and got made redundant couple of days before I got my results.

Pink Hope are the Australian charity that helps women with both support and resources and I have met amazing people through them who told me things I needed to know, but would have never asked.

Other Facebook groups I’m a member of are called Previvors and the BRCA Sisterhood group.  These are closed groups and you may have to explain why you are qualified to join. I would say, these groups are brilliant, but I am glad I didn’t join these particular groups until I was ready to have my preventative mastectomy. Culturally American groups are very different from Aussie and UK groups – we are a lot more conservative and less likely to share so honestly, or visually. This is brilliant for when you’re going into surgery, but at the BRCA testing stage I’m not sure how helpful it is to see women’s reconstructed breasts. The ‘freak-out’ potential is a little too much.

I started seeing someone professionally following my diagnosis. I only went a few times but I do think it was useful to help try to process everything.

Results day

Take someone with you and get them to drive you.

Despite having broken up with Mr F a couple of days before the test, he was the person I wanted to come with me.  Go figure huh.

Just having someone there immediately after helps avoid those feelings of despair and the opportunity to overthink.  We went and had a lot of wine and spoke about everything other than my new BRCA status and our relationship.

A positive result

Remember throughout all of this, you may not test positive.  But if you do, it’s not a death sentence. You need to remember you don’t have cancer and chances are, you may not get it any time soon. Take your time deciding what you do next and like I said, lean on everyone you can for support.

Resources

–          http://www.australianprescriber.com/magazine/34/2/49/51#.UZoFQ7Vgd2A

–          http://www.genetics.edu.au/Information/Genetics-Fact-Sheets/Cancer-Genes-and-Inherited-Predisposition-Overview-Cancer-Genetics-1-FS47/view

–     http://www.genetics.edu.au/Information/PublicationsBrochuresandPamphlets/Genetic%20Tests%20for%20Breast%20and%20Ovarian%20Cancer%20Decision%20Aid

–          http://pinkhope.org.au/

–          http://www.mydestiny-us.com/

Advertisements

Taking over-sharing to a new level

JoliTweet

Today I went on national TV and talked about getting my boobs chopped off. I almost cried when I talked about my mum, and I now want to remove a mole I have on my face but apparently I did very well. I managed to get a plug in for http://www.pinkhope.org.au and am chuffed that I did my bit to get our story out and raise awareness of BRCA. I’ll try to get a clip and post it up here.

The other highlight was that Angelina Jolie ‘favorited’ my tweet to her. We’re so going to be BFFs forevs and evs.

Angelina; Helping Previvors find their place

me2

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.

Very Inspiring Blogger Award

inspirational blogger

The only award I have every received was a highly commended certificate for my handwriting at a St. David’s Day Eisteddfod in primary school.  Those of you who know me, and especially those who work me will know that I have the most appalling hand-writing known to man. I blame my Dad who has passed on his Drs scrawl, combined with a flamboyant and creative mind. Anyway, I think they made a big mistake.

So, it is with great humility and pleasure that I accept what I believe in my first ever, legitimate recognition with the Very Inspiring Blogger Award.

One of the brilliant things about bogging has been connecting with people from all over the world in similar situations to myself. My very first ever blogging friend was Mogatos who writes, Saying NOPE to Breast Cancer http://bilateralmastectomy.wordpress.com/2013/04/25/very-inspiring-blogger-award/. Her blog is brilliant and very informative and she has been a great support to me over the last few months, including very kindly nominating me. She’s also a couple of months ahead of me in her journey so she gives me a bit of a heads up as to what to expect.

One of the conditions in accepting the award is to tell people 7 things about yourself. If you know me you already know I am a massive over-sharer so it’s difficult to find 7 I won’t have already shared, but here goes:

–          I am 34, female and live in Australia. I grew up in Wales and class myself as Welsh

–          I can only say a few, rude phrases in Welsh

–          I have 3 tattoos. One is my mother’s name written in Thai, one is a set of stars that I got done in Selfridges in London and the last is now a splodge I obtained from a questionable establishment in Swansea

–          I’m a pretty good singer. I don’t really sing any more but I used to a lot and won lots of beer T-shirts in university Karaoke competitions. I even won a ‘pager’ in the days before everyone owned a mobile phone

–          I starred in a reality TV program when I was 19. It was on Sky 1 in the UK and it was filmed over 2 weeks in Malouf. This is all you need to know

–          I love coffee so much and my morning cup, in a nice coffee shop whilst reading my kindle is my favourite part of the day

–          My mum was and still is my absolute hero and I can’t believe how much I still miss her 12 years since she died

OK, there are probably a few more than 7 facts there.

The other condition is that I have to nominate other bloggers and tell them about it. So my nomination goes to Lissie Bendy who writes about her journey with breast cancer at 37 on http://shittytittiebangbang.com/. Lissie’s humour and courage is incredibly inspiring and I love her Shittietitttie Chemo Cuts Reveal Challenge. The challenge inspires people to make positive changes in their life and share their commitment with others. Every time ten people share their commitment, she gets a new haircut. And despite sporting new locks that would challenge the best of us, she always looks sensational. http://shittytittiebangbang.com/2013/04/08/the-shittietittie-chemo-cuts-reveal-challenge/.

So along with my nomination, here are my commitments to make positive changes in my life.  I commit to keeping my stress levels to a minimum, to stop sweating the small stuff and to meditate at least once a week in order to achieve this. I will go see a Dr about my really painful periods to put my mind at rest rather than worrying about it. And finally I will thank my lucky stars every single day that I was able to take at least a little bit of control over my future and will so enjoy this life I have to its maximum limit.

The Good the Bad and the Ugly: 6 Weeks on in no man’s land

Purpose

Hello. Firstly I am so sorry it has been so damn long since I have written. I promise I will try to explain.

The good

I am doing alright. I have healed well and my arm movement is good. A bit stiff but good. My strengths is coming back and for all intents and purposes, I’m great.

I’m back at spin classes, had my first run this week and can do yoga if I so please.

I’m very much back at work and it’s honestly like I never left.

My boobs are slowly growing. I’m currently at 200CC each side and have another fill this week. My nipples are looking perky and healthy and whilst one side sticks out more than the other, all is good in the hood.

The bad

For all that is well I can’t say that mentally I’m in a great head space. Bear with me.

I’ve written before that the run up to the PBM was one of my happiest times of recent years. I was focussed and efficient to superwoman proportions. I easily knew what was important, didn’t sweat the small stuff and I of course, had an enormous sense of optimism.

Right now, I’m feeling like, “Oh. What now?” Or maybe that is the wrong way to put it. I just don’t know how I feel, and herein lies the problem.

Life is so back to normal that it really does feel as though I was making such a fuss of everything before. Because I’m visibly well, everyone else has seemingly forgotten about it too. Or at least has no reason to treat me otherwise. (or should they have to)

My social calendar is ridiculously full, both with obligatory work and personal commitments, and as there is nothing wrong with me it’s impossible for me not to go. But the thought of having to attend some of these things of makes me so anxious that I then withdraw at all other times.  I have said no to so many non obligatory invitations for coffee or drinks that I sound like a broken record and feel rotten every time I do.

The ugly

It was my birthday this week. Hurrah! 34.

Mr F asked me what I wanted. I said a ring (as in engagement) or a blender… I got a blender. I also got an amazing photo book of all my nudie photos and got spoilt rotten with flowers and a posh meal in a beautiful restaurant.

Despite having a wonderful birthday, I woke up on Thursday incredibly sad. You reach certain milestones in life and it’s OK that you haven’t done what you thought you’d do by a certain age. But this year it wasn’t. I have a good job and am accomplished in my career (with no desire to run my own PR agency thank you very much). I moved to the other side of the world and live in the most amazing country, in a fabulous house with lovely friends and an incredible boyfriend. And apart from getting my boobs chopped off, I am otherwise very fit and healthy.

But in my current state, residing in no man’s land, I felt I’d be in a different world by the age of 34 and would have a couple of sprogs and a ring or two on my finger. I do know that even if I’d done all this, life doesn’t work that simply. I am just struggling to stop asking myself the question, what next?

I’m a little ashamed I feel like this. Especially considering what an alternative life with cancer could look like, which is why I’ve struggled to metaphorically put pen to paper in the last few weeks.

Anyway, my commitment is to stop moaning, maybe look into taking out some therapy, and finding a new hobby.

p.s. It’s good to speak to you again.

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

 

 

Confirmation I did the right thing

WARNING: THIS POST CONTAINS GROSS DESCRIPTORS. DO NOT READ WHILST EATING BREAKFAST

Right Thing

Yesterday, I had my first breast surgeon appointment since my discharge from hospital. Part of me felt like there wasn’t really much for us to chat about, having just escaped 4 days ago. However, it came at a really good time. It was my first weekend on my own and on Sunday I had started to imagine a) there was fluid build-up in my right boob and b) my right nipple was definitely dead and about to fall off.

My sensible side realised that both of these options was unlikely but I was looking forward to getting some reassurance.

My post-op nipples

My poor post op nipples haven’t looked great. I have been assured this is perfectly normal and they do tend to get dinged in the surgery process, forming a blister or scab that will eventually drop off to reveal a healthy nipple.

My left nipple on my preferred boob (preferred because it was 2cm higher than the right breast, a better shape, was never biopsied and didn’t get an infection) had a little scab on the bottom of the nipple. In proportion it was a little like Tasmania to Australia, or Anglesey to Wales.

australia.tasmania.lg_

My right nipple however on my rubbish boob (rubbish because it was more saggy, had been biopsied, was home to an infection, and something else I’ll tell you about in a minute) was complete scab. Yes, my whole nipple was a scab. Imagine if you will a total eclipse of the sun. That was the scab on my nipple and the reason why I repeatedly believed it was about to drop off.

eclps12

A surgeon with a scalpel

I arrive at my breast surgeon appointment, take my top off, lie on the bed and the next thing I see is my surgeon going to the cupboard to grab a scalpel.

OK.

He goes back to my nipples. I don’t really want to look and I can’t feel a thing as all my nerves are dead so I ask him, “what are you doing?” To which he replies “oh just taking the scabs off your nipples”.

Oh well, that’s OK then.

The left side. Simples. Pops off with little persuasion.

The right side. Even before he goes to tackle the total eclipse of the nipple I’m feeling nervous. He takes the scalpel to the scab and assures me that the skin under the scab looks healthy and pink. Reassured by these words I decide to sneak a peak when he goes to get something else from the cupboard. URGH. My eclipse scab is lying to the side of my now, bloody right nipple. Vomit. Thank god he got a plaster and dressed it up because my stomach couldn’t handle any more.

Time bomb tits

Dressed and scab free we return to his desk where he gives me my pathology report, which is the analysis of my removed breast tissue.

Again, the lovely left side had no abnormalities to note.

My rubbish right side however had a couple of warning signs. There was a 3mm fibroadenoma that I already knew about as I had a biopsy needle injected into 4 times it about 12 months ago. Fibroadenoma’s are lumps composed of fibrous and glandular tissue.” Unlike typical lumps from breast cancer, fibroadenomas are easy to move, with clearly defined edges.” OK, job done.

What was also there was an atypical ductal hyperplasia. My surgeon described this to me as “proof that it was on the turn.”

Oh, right. So I came home and Googled it and found this description. “Atypical ductal hyperplasia (ADH) is not breast cancer, but is considered a precancerous condition…  If you’ve been diagnosed with atypical ductal hyperplasia, your risk of developing breast cancer is 4 to 5 times the average lifetime risk.”

Wowsers.

Combine this with my BRCA2 stats and the way I see it, Rubbish right boob was just waiting to make its move. Whether that be in one year, 5 years or 10 and thank god it hadn’t started already. So no, I didn’t need confirmation that I had done the right thing, but with these odds even I’d place a bet and I can’t gamble for toffee.

Infection = Bad: The last 48 hours

Boy. That’ll teach me for being bored. A lot has happened in the last 2 days (days 9 and 10) so I’ll cover everything in bullet form so this doesn’t become biblical. Before I do here’s a quick synopsis to bring you up to speed.

In a nutshell:

Some of you will remember my right-side drain leaked on Day 6, we tried to save it, but it looked like it was on the way out so we removed it on Day 7.

I woke up on Day 8 to find my right boob had swollen up and felt like a water balloon.  I freaked out because I’ve repeatedly been told fluid in the breast cavity is bad, fluid can lead to infection, infection = bad! Ultimate consequence, removal of the expander that is sitting behind my pectoral muscle, we have to wait until it heals, we can then run this show all over again.

Both the plastics and breast surgeons didn’t feel I had anything to worry about. The fluid wasn’t much, it would in all likelihood dissipate through my body in time, otherwise they’d drain it with a needle…

Got it? Now we can begin:

48 hours

Day 9

8am – 10am

  • I woke up and updated my Twitter and Facebook status claiming that today was a think positive day.
  • Nice breast surgeon from Manchester came to see me. He checked my right boob, said it was OK and unless I was in pain, to leave it. Looked at my left side drain and said if plastics were happy, I could go home today or tomorrow. IMMENSE!
  • My lead breast surgeon comes. He agrees with what everyone has said. Offers to overrule everyone and take out my left-side drain and discharge me there and then. I may be a bit bolshy at times, but I don’t like breaking rules so I say no. If it wasn’t for the fluid build-up in the right side I would have jumped at the chance and agreed.

12pm

  • Plastics team come to see me. They are less enthusiastic about the discharge chat, but agree that the right boob still looks fine and IF, IF, my drains are low enough tomorrow, I can go home.
  • I hit rock bottom, cancel my visitors for the afternoon, but head out to meet Mr F for lunch. There are no trips to the beach today, just up to my usual coffee shop around the corner.
  • Lunch – I cannot stop crying. Mr F has a rubbish lunch.
  • I come back and try to read but am too woozy so I got to bed for a couple of hours. Wake up shivering  Put some more clothes on and get back into bed. My chest is really tight so I loosen up my binder and try to go back to sleep.

6pm

  • Can’t sleep, still shivering, I feel sick and my chest tightness is becoming unbearable. I can’t breathe and I’m having sharp pains down my back.
  • I call the nurse and ask her to take my temperature. She does and it’s fine. However I can’t sit still long enough for her to take my blood pressure and run to the toilet thinking I’m going to be sick. No vomit.
  • My breathing and pain in my back becoming worse. My most matronly like, and Welsh, nurse tries to run an ECG but my back pain is too bad to sit still. She calls a Dr.

7pm

  • Before I know it I have 3 Drs in the room asking me questions. They have felt my right boob again and still don’t think that’s the culprit. I have blood taken from 3 different places. A 4th Dr comes, lots of questions, finally an ECG, and they take my temperature again. My heart rate is 100 beats per minute and my temperature is 39.3.

8pm

  • They want to take a chest X Ray and ask if there’s any chance I might be pregnant. It’s very unlikely, but this whole surgery thing has played havoc with my cycle so is there any chance? A minute one, possibly? I think I could maybe sue them if I am and my unborn baby is damaged by the X Ray radiation? So, I take a test… Not pregnant! Don’t worry; X Ray commence.

10pm

  • Cut a long story short, it is determined that I have some sort of infection, they pump a lot of antibiotics in me and my temperature comes down. By this point I’ve called Mr F to hospital from the pub. He is lovely, concerned and smells a little of beer.
  • I am shattered and terrified.

Day 10

8am

  • Wake up feeling better than I did, txt my friend who I had cancelled on to tell her about my infection, she calls straight away, I can’t stop crying.
  • She calls my ward and requests to break visiting hours protocol to come and sit with me.

9am

  • She brings me breakfast and sits with me to do crossword puzzles.
  • My nice Manchunian breast surgeon comes, he looks at my right breast. He’s not happy. The fluid has increased and my breast is red. He recommends we do an ultra-sound to determine how much fluid in there. We’ll stick a needle in to drain the fluid (remember, plastics don’t like this as it’s a foreign body, which also may risk infection).

10am

  • My Child Plastic Surgeon (CPS, who I now really like but I need consistency in my names so you know who I’m talking about) comes. He also thinks we need an ultra sound, but at the same time he is concerned. Wants another urine sample. I am forced to drink a lot, quickly, in short succession. I pee on demand and, sorry this is gross, but it’s boiling hot!

11am

  • CPS returns to say he has spoken to a plastic surgeon (not my main guy, but another guy who I don’t rate for reasons too long to discuss) who recommends that I go back into surgery, they open me up, remove the expander, clean out my cavity, sew me back up again and add another drain. I ask CPS what the chances are of this not working and me losing my expander – he says’ there’s a 15 – 30% chance I will lose it. CPS is clearly a glass half full kinda man, and I think he’s made up these stats.
  • The surgery can’t be until 5pm as my lovely friend just brought me breakfast.

11.30am

  • Mr F arrives with a Cadbury’s Whisper Easter Egg, which of course I can’t eat as I’m nil by mouth. My temperature fluctuates throughout the day and my chest is still tight, making it difficult to breathe.
  • I have a moment where I question everything and wonder what the hell I’ve done. I’ve mutilated my body on the off-chance I might get cancer, and now I’m about to go back into surgery which may or may not increase the chances of this whole thing failing?

6pm

  • I’ll be honest with you, I’m still not in a great place as we head into surgery. Just as we are about to go through the double doors into theatre, CPS tells me that he has spoken to my main silver-fox plastic surgeon and he doesn’t want to remove the expander and just wants CPS to open my right chest cavity, drain it and give it a good clean. Everyone seems really pleased about this and is implying I should be too. In retrospect I understand it’s a much less risky procedure.

8.30pm

  • I return. CPS says it went well and the infection had’t spread to my muscle and my chest expander. My temperature is down and I can breathe a little easier.

So, as I was saying, a lot can happen in 48 hours. What happens next is anyone’s guess. All I know is I’m going to sit very still, not move very far from my bed and hope for the best.

Time

2 Aims For Day 3

GoalI have 2 aims for today, my third day after the mastectomy. One is to look at my new boobs – or lack thereof. The other is to move my bowels for the first time in three days.

Boob Watch:

I have had little peeks of my deflated breasts over the last few days.  Drs come and want to look and my support bandage keeps slipping down. However, I have not been brave enough yet to go full frontal and look at what my chest is currently doing. I’m not going to lie, I’m not hugely looking forward to this moment, but I have to look because a) they are part of me, b) I need to be familiar with what’s happening so I can tell if anything is going wrong and c) they won’t look like this forever so I should just suck it up.

I have no real game plan for this, I just need to do it.

Bowel Watch:

I promise I won’t gross you out with this. It’s bad enough I’m broadcasting about my deflated breasts, let alone my bowel movements. However, I have not been in 3 days and as a healthy, coffee drinking girl, this is not like me. I haven’t done anything wrong, it’s the wonderful painkillers I’ve been on, plugging me up to numb the pain.

So this is my game plan on operation, get things moving down south:

  • I have done my exercises for this morning (I’ll share these in a separate blog post). I have progressed onto the exercises for patients 7 days after their surgery as days 2 – 7 were too easy.  Don’t tell Mr F! I also threw in a few squats and lunges.
  • I have drunk my first glass of prune juice for the day. Look it’s not gross, but it’s full on.  Read here for why prune juice is amazing. Essentially it makes you go to the toilet and helps fight cancer. GO PRUNE JUICE! http://www.wisegeek.org/what-are-the-health-benefits-of-prune-juice.htm
  • I am going for a coffee in the sunshine. I have been told to move more today and move I will. Sod that regular sized coffee I had yesterday. Today it’s large, skimmed latte to have here, but in a take-away cup, followed by a walk round the car park.

Wish me luck. I’ll report back on my missions. Hopefully I won’t be crying / full of prune juice by this evening but I’ll let you know. x

Prune

Post-Mastectomy Commitments

Image

It’s really important for me, as the countdown ever looms, that I make commitments now about how I want things to be after my mastectomy.

I’m not naive. I realise that many things will be out of my control. Whether I’ll get an infection, how much pain I’ll be in or how quick my recovery will be.  I know that all of these things are out of my control.

What is within my control is my state of mind and how I respond to my situation.

Believe it or not, these past 3 months have been some of the happiest of my life. I’ve been focused on something much bigger than me, it’s easy to see what’s important and what’s not, I don’t sweat the small stuff as much and I’ve reconnected with friends I haven’t spoken to in years. Above all, I’ve had an amazing reminder of how wonderful the people in my life are, as well as the kindness of strangers.

But I’m keen that I don’t lose sight of all of this when I’m so desperately tired, or my chest feels like it’s in a vice, or I’m frustrated that I can’t do everything I was able to do before the op. So this is why I’m sharing my post-mastectomy commitments.  To serve as my promise and a very public reminder for how I want to, and how I should, think and act once my boobs have left the building:

I will not forget why I choose to remove my boobs and that it is the most positive decision I could have ever made

I will commit to progress!  Not measured on how I was before the operation, but to how I was yesterday

I will remember to smile at least once a day

I will relish in the kindness of others and thank my lucky stars that these people are in my life

I promise not to get frustrated and take it out on Mr F because he’s the closest person to me, but will remember how much he has sacrificed for me and supports me

I will not fall into a funk and will commit to expressing gratitude, for the obvious and the hidden, every single day