It's a date...

Wow! My September appointment soon came round.  So last Tuesday, Mum and I took the train to London to see the surgeon.  I had been anxious for a few days prior, as I was really hoping to come home with a date for surgery.  But I had a horrible feeling he was going to tell me to come back in 3 months again.  So, I went into his room, and he went over what we discussed at the last appointment.  The recon options, the reasons for my decision and everything else which comes with the surgery.  I told him I had decided on the expanders/implants surgery and that I was now happy to lose my nipples and have them reconstructed at a later date. He explained where my scars would be, the recovery, the complete procedure and I can honestly say, I have total trust and confidence in him, which is bonus!
So...how do I feel?  Well, when I came out of the hospital I felt so excited and relieved that I finally had a date and I could now start planning.  I have informed work, friends, and family, and now I just have to wait...8 weeks.  Wow!  When I see it written down like that it doesn't look long at all! And going by how quick this year seems to have gone it will be here before we know it!

And so, on Monday 5th November I shall make my way to Barts Hospital, London to undergo a prophylactic Bilateral Mastectomy with expanders and implants reconstruction. I am sure that afterwards I will feel relief that I won't have to go through the screening process every year for the rest of my life.But, before then, I have a whole 8 weeks to make the most of my boobs which have been with me for so many years...or should that be I have 8 weeks to start detaching my self from them?  (Not literally of course, that's a job for the wizard surgeon to do!).

I decided to have a party before I go in for my operation, for a few reasons really.
1) To say a big thank you to my wonderful friends and family who have completely and wholeheartedly supported my decision.
2) To say a fond farewell to my "Little Ladies"
3) It's as good as excuse as any to have a party, surely?!
4) It would give me something else to focus on rather than farting about and boring everyone about an operation! (People seem more interested in a party, and who can blame them?!) ...That was the plan, but now, I seem to have  turned it into a fundraising party for National Hereditary Breast Cancer Helpline ...Well, why not?

So now I am on a mission to beg, borrow, and steal (OK, not quite steal) raffle prizes!  So if you do happen to read this and would like to donate, please get in touch.

Oh, and as a last note...My surgery appointment letter came through making it official!  :-)

Michelle
xx

Incremental Steps...Fundamental Changes...

Well, I'm so running behind with this.  I had my appointment with my surgeon back in June!  So much has happened at home since then that I just haven't had chance to update!  But here I am now. :-)

So after what can only be described as an epic journey down to London (2 and half hours driving and then an hour on the underground all executed on only 3 hours of sleep!), then an hour wait at the hospital, it all became too much!  While sitting in the waiting room, and seeing a number of ladies waiting for some sort of Breast Cancer news, whether it be the same reason I was there or waiting for results, I spotted a lady who was probably about early 40's with a teenage (I'd say14 or 15) boy, who I guessed was her son.  She went in before me. When she came out, I heard her say to the boy, "its positive, and I mean not a good positive".  Watching them after, leave the hospital, and her put her arms around him, a huge wave of emotion came over me and I just had to get out of there.  The last thing I wanted to do was be crying when I went into my appointment, what on earth would my surgeon think?..."Hmmm, she's not ready for ANY surgery, she's too emotionally unstable!"?   All I kept thinking was, "That could so easily be me with my son Dylan going through what they are going through now".  Thankfully, that won't happen.

After I had composed myself, I went back in to the building and waited for my name to be called.  I didn't have to wait too much longer.  My mum and I entered the surgeons room, and I felt like I was in the headmasters office back at school!  I don't know why!  They say knowledge is power, and boy is he knowledgeable! We talked about my BRCA result and BC and OC family history, and he seemed to just flow into a discussion regarding the options surrounding mastectomy and recon for which I was so grateful because I went there thinking I would have to persuade him to perform the operation.

The one thing I did feel I was trying to persuade him to do was to keep my nipples, he didn't seem too keen to do this because he would still have to keep some breast tissue to keep it alive.  He did explain the risks in percentages, lets just say since then,  and speaking to other women who have lost theirs, I have decided to go along with his suggestion.

He talked about Diep flap recon, but after examining me, he said there wasn't quite enough fat there to do both boobs.(Strangely I felt quite chuffed at this back handed compliment).  Then he talked about implants, which is what I was hoping for.  Then he threw a right spanner in the works by talking about a new procedure which he has pioneered...This involves putting an implant in for about 4 months before removing any breast tissue.  As the surgeon said "It does mean you will look like Jordan for a few months"  eeek not sure how I feel about that!

So, as he gave me so much to think about, he wants me to return in September to discuss further and hopefully set a date!  At the moment I am just taking each day at a time, taking in more information as I go, until I return to him.

Whichever way I go with regards to reconstruction, i know it will probably be a long drawn out process, which I will have to endure probably over a couple of years.  But as my lovely boyfriend, Andy, always quotes; "Incremental steps, fundamental changes"

xx

My "Bit of Rough"...

Well, here it is - Long overdue, long awaited, an updated blog! Well, what a time it's been! It's fair to say I may have neglected this over the last couple of months. But believe me when say, there's been a whole heap of stuff going on in the backgound! Firstly I need to mention that the support groups for the National Hereditary Breast Cancer Helpline that I have been helping with have been going marvellously! I have already been to 3 and have another 2 planned, these are held in Wilmslow, Cheshire and Lichfield so if you would like any more information, please comment and I will let you know the details. I also hope to attend a Hereditary Breast Cancer Awareness event in Leicester next month, which I'm really looking forward to which will raise the profile of the helpline and the work we do.

So, what else has been going on?...Oh yes - I have FINALLY received an appointment to see the consultant regarding my impending Prophylactic Bilateral Mastectomy (which will, from hereonin be referred to as PBM to save typing it!) and immediate reconstruction (which will, from hereonin be referred to as RECON to save typing that too!) I have only waited 5 months for it - but considering that during that time, the surgeon has relocated, and so has my own G.P, I guess it's not THAT bad!

I guess it's only fair to write how I'm feeling - Feelings description - hmmm... Not too sure about this at the moment! After my GP called me to say I had an appointment, I was, I must say very grateful at first. The relief of the waiting game being finally over, for me, was a huge weight off. However, for the last few hours I have felt quite emotional! My first reaction following the call, bearing in mind I had to shoot straight into the car to pick my mum up from the train station, was to hold a boob! I can't even remember what I was thinking! I guess, "That's it, you ARE actually going! Soon my fear that you WILL bring Cancer to me will disappear!" I wish I could explain to those of you reading this the exact thoughts and feelings that come with such a day, I imagine you may sympathise! But the truth is, only those reading this who have actually been through it will empathise.

People have commented that I am "brave", as much as I appreciate any comment I receive, I do not think I am brave atall! Soldiers of the British Army are brave, true war heroes, my Grandad, my brother. People who actually face Cancer - My Aunty, My Mum!

So, tonight, I have been sitting here, in my living room, feeling altogether emotional! It was like any other Friday night... my boyfriend having a strum on his guitar...and that was it! But boy, the tears did start a'comin! I think the reality of what is actually happening, suddenly hit me. So, I went outside, had a few tears, alone, and returned...ready to take it on! Gosh, this really sounds all very "Woe is me!"...That is really not how I want it to sound atall, but I suppose as I am just starting this journey, you have to learn to take the rough with the smooth, maybe today is my bit of rough.

Lots of Love
Michelle
xx

It's The Final Countdown...?...

So, today I attended the Outpatients for what will hopefully be my last ever Mammogram as part of my screening! Last night was a terrible night sleep wise... emotions were running high as I seemed to have read a few stories lately of women who have had a Breast Cancer diagnosis following their last screening prior to prophylactic surgery. I don't even think I will feel confident that everything is clear until I have the little ladies operated on! Luckily I have fantastic support from my Mum, who came with me. So how is it that I have had moments of utter despair and have felt the need to hold back the tears today on more than one occasion? I know this doesn't come from being unsure of the decision I have made, of this I am 100% sure! I'm sure it isn't that I will miss the Mammograms! (Who would?  Bloody uncomfortable procedure that it is!) So what is it? Why do I feel so God damn emotional?!! Is it because I have actually started on the road to what will hopefully be the beginning of the end for me and my BRCA friend? Is it because I have started the final countdown to ridding myself of this high risk of the disease which has affected my family and so many of my BRCA friends?  I just don’t know?

Maybe it’s because today has been all about my little ladies, with which I kind of feel I’m distancing myself from, emotionally, just lately.  Now, this, coming from me who once (not so long) said, and I quote, “One of the reasons I don’t want surgery is because I love my boobs”!  You see, along with the Mammogram, I have had 2 phonecalls from my GP’s secretary to tell me that they have heard from the surgeon I chose, and that he is moving to London (This I already knew but didn’t mention it to the Dr as I thought she may be reluctant to refer me), so if I still wanted to be referred, would I be prepared to travel to London for the surgery? ...Hell yeah!  Then she called me back to tell me that they had relayed this information to the surgeon’s secretary and she will deal with it tomorrow, and sort a date out. 

Gosh, I hope it doesn’t move this quick for surgery!  Although I’m sure of my decision, I’ve too many things to do before I combat that!  The major one being I don’t want it just yet!  Is that wrong?  I imagine alot of women, once they have made up their mind to undergo this huge operation, just want it over and done with?!  Not me, I’m kind of hoping that I can choose to have it done later in the year. 

And so, this brings the end of the day...tomorrow, the day after, and the day after that, until I receive that little brown envelope taped at the flap, I shall await the results of my Mammogram, while also waiting in anticipation for an appointment with the surgeon. And so, let the waiting game commence...

Finding my new "friend"...

Well then, here it is...my blog! I have no idea of the format this will take, who will read it, if indeed anyone. All I do know is, I feel compelled to write, compelled to keep a record of how I'm feeling, the decisions I make, the decisions I don’t make, the effects of the aforementioned decisions on my life, that of my family, friends and work colleagues. 

So, if you are reading this, I guess I better keep my promise and actually give you something to read!

As you can see from the title, this blog is about me and my “friend” BRCA.  The title does have an air of sarcasm about it you must understand.  For BRCA is NOT a friend at all, nor an ally, associate or even co-conspirator.  It is in fact a foe of the highest accolade; my arch enemy, my nemesis and literally, a mutant.  Being BRCA 1 positive means I have a faulty gene.

We all have the BRCA gene, but in people like myself the stupid fault, which I inherited from my Granddad (completely NOT to blame!) it doesn’t work properly, which as a result of said fault puts me at a higher risk of developing Breast and Ovarian Cancer.  (To put it into figures for you, my risk of developing Breast Cancer is 85% and Ovarian Cancer 40-60% - Nice odds hey?!) And it’s as simple as that.  Just like the genes we inherit determine such things as eye colour, hair colour and height, so BRCA determines our risk of developing the disease.

So how did I find out such news?  There was a strong family history of female related cancers in the family. (I won’t bore with too many details), more recently, my maternal Aunt.  She developed Breast Cancer aged 42, and again 18 months later.  She was the first in our family to be tested for the faulty gene...positive.

Fast forward 10 years to when I was 30.  I had this niggling thing at the back of my mind; it really was like an itch I couldn’t scratch.  Only one solution, I needed to have the test, I wanted to find out if I was also at risk.  Again, I won’t bore you with all the details but as you may have gathered by now, I tested positive, and so did my mum.

So to deal with the news...What’s a girl to do? So many options - preventative surgeries? No way, I didn’t need it or want it!  Do nothing?  Nope.  To me personally, what was the point of having the test if I wasn’t going to do anything with the information? Annual screening? Yes please, that will do me!

So the plan was to be screened using MRI annually for Breast Cancer and a scan and blood test for Ovarian Cancer.  I learned quickly how to be breast aware.  If there was any change, I wanted to be one step ahead of this sucker!

Mum was also being screened and had been for the previous 10 years.  Then – BANG!! 6 months after we had our BRCA results, in October 2005 mum was diagnosed with Breast Cancer.  This was a massive shock, of which we were not at all prepared!  But we had to concentrate on ridding mum of this invasive, unwelcome parasite.  Lumpectomy, Radiotherapy and Chemotherapy along with hair loss, tiredness and a stalwart determination to beat it, all helped a successful victory over Breast Cancer.    

For me, that was enough to make one of the biggest (yet not toughest) decisions of my life.  I had to try and eliminate my risk of Ovarian Cancer.  So, at the age of 31 on April 16^th 2007, I endured a lengthy operation to remove my ovaries and womb.  I was lucky enough to be blessed with a beautiful boy, Dylan, aged 7 at the time.  I knew I didn’t want any more children.  I can’t even remember being in turmoil over having made such a big decision. 

So that was that, I was relieved that the risk of developing one of the hardest cancers to detect had now been extinguished.  Ok, so I couldn’t have any more children, but I would be around for the one I did have, and to me, that was far more important.

I am conscious that this is turning more into an autobiography than a blog, but at the risk of boring you out of here, this is stuff you need to know to understand where I’m currently at.

In 2010, just a few months prior to mums 5 year anniversary of being diagnosed, we discovered the Breast Cancer had returned.  I’m so very glad to say that again, she was successful in defeating the disease.

Until recently I have declined the option of radical Breast Surgery...it scared the hell out of me!  However, I have now changed my mind.  I hope to undergo surgery (Prophylactic Bilateral Mastectomy with Immediate Reconstruction) later this year.  I am currently awaiting an appointment with a great surgeon based in Manchester.  I have chosen to travel away from my locality for this procedure as the surgeon in Manchester performs the type of procedure I would like.  So there you have it, and that, believe it or not, is a long story cut short!

My aim for this blog is to have an avenue to pour my feelings into during the next few months as my operation approaches.  And to give anyone reading this, an understanding of some of the options, hurdles, and sometimes ignorance we BRCA’ers face.  If just one person has a better understanding of what being BRCA positive means, then it will all be worth it.  xx