Tuesday, 11 December 2012

Is this normal?...

Pain, swelling, bruising,infection, inability to have a good nights sleep, I would even go as far as to say maybe a mild depression! Just a few of the things I have been experiencing during the last couple of weeks.  Today I am 5 weeks and 1 day post-op and can't quite believe the time I have had! I don't want this to be a "poor me" account, just an honest account!

It started with pain in my breasts, to be honest it felt like Mastitis which I suffered with after I gave birth to my son almost 14 years ago.  To relieve the pain then, I walked around with cabbage leaves inside my bra (Midwife's recommendation which worked!).  But for this, I couldn't even wear a bra and have to say I wasn't able to wear one for a whole 4 weeks!

So to give you an idea of the difficult time I've had I'll explain... on Sunday 25th November (20 days post-op) I ended up going to the emergency Drs.  When I called I explained that I had undergone breast surgery and thought that I may now have an infection as I was in so much pain, my Lefty was very swollen, hot to touch and red and that I thought I may need antibiotics.  I didn't feel I could even wait until the following day to go to my own GP as I had had such horrendous nights with it that I couldn't stand another night of no sleep and constant pain.  The Dr, although very pleasant, didn't really help much and sent me away with painkillers.  He took my temperature but because I didn't have a high reading, thought there wasn't any sign of infection. So I thought I would just dose myself up with the painkillers he prescribed, even if it meant me sleeping all day and night until the pain cleared up! However, they didn't just make me sleep, they made me zombified and sick! I felt even more rotten than I did suffering the pain. So after a couple of days I decided to ditch the stronger painkillers of the lot and just had paracetamol and the odd strong one, mainly at night so that I could at least try and get a half decent nights sleep!

The amount of times I have just burst into tears because I felt I couldn't cope any longer with the pain,discomfort and complete inability to do anything was just ridiculous! And because I felt like this I also had the "I wish I'd never had the f***ing op!!" (through tears). Thank God for my lovely boyfriend and my Mum. I simply could not have got through any of this if it wasn't for their support.xx

***Beware reading the next paragraph if you are tickle stomached!***

So the following Friday (25 days post-op) I woke up and thought, "Sod this! I've had enough...I'm just going to PRETEND I'm better, that might work!?!" So that was my plan...I even tweeted it! However, while I was still in my pyjamas, I couldn't help but notice a funny smell.  I looked down my top and there was obviously something leaking from under the steri-strips on Righty. Also I could see bits of black on the side of the strips, when I pulled them slightly to the side I could also see a bit of green gunk.  I was so worried of what was underneath the strips, my worst fear was Necrosis. I called my mum and asked her advice, she told me to call the Dr's straight away. So I did and made the appointment for later that day.  In the afternoon, my Breast Care nurse called me and I told her how I had been feeling in myself and about Lefty and Righty.  She was quite concerned to say the least and went off to speak to a consultant (my own wasn't in clinic on that day), she came back and said I need to get my GP to refer me to my local hospital as the team at Bart's believed I needed Intravenous antibiotics. She also told me I needed to get the steri-strips off so that the GP could have a good look, and I was to call after my appointment to let her know what the outcome was.  

My GP didn't want to refer me to the hospital for a number of reasons so gave me oral antibiotics. I called the BC nurse back and told her this.  She was still adamant that I needed to be admitted, and asked if I could send her photos of my boobs.  I did this and she called me straight back while she and 2 consultants were looking over them and said I definitely needed to be admitted for IV antis. So off to my local A&E Andy and I went! 

I really was not prepared for the reaction I received when telling the staff why I was there.  First of all my initial "I underwent Breast Surgery just over 3 weeks ago" had to be immediately followed by "It was risk reducing mastectomy with immediate reconstruction" as I'm sure they thought, "She's only had a boob job, no sympathy" (call me cynical and paranoid!)...Then I had the "Why travel all the way down to London? We have a team here who can perform that surgery...what a trek for you!"...erm...because it is my patient right to choose my own surgeon irrelevant of where they are based, and if there is a risk to my health as a result then I expect to be treated the same as any patient, thank you! So after speaking to the nurse, then a consultant, then a second consultant, who, thank God knew what I was talking about as he used to perform these operations himself, I was given one shot of IV antibiotics and sent home with oral ones.  Not the outcome I think that the Bart's team were looking for but I knew they would be in touch after the weekend anyway and I was preparing to travel back down there should they wish to see me. 

So on the Monday morning (28 days post-op) my BCN called again to ask how I had been over the weekend, I told her what had happened at the hospital on the Friday, and she said she would speak to my surgeon (affectionately known to his team as Prof) and would call me back at lunchtime.  When she called me back she said that Prof would like to see me the following day, and that he was also there and would like to speak to me on the phone. How re-assuring! So after speaking to him I arranged to go down the following day. My BCN said that I MUST wear a bra...This killed me as I was so so sore, but apparently I should have worn one from when I had the op! No-one had told me this so she said she would also arrange for me to see the Bra Nurse while I was down there so that I could get a proper supportive bra.  I was so grateful for this! 

So on the Tuesday I went down to see my surgeon who arranged an ultrasound scan for me on Lefty.  This proved that there was a build up of fluid, which was drained...a whole 200mls!!  I was also fitted with a bra, and had the wound on Righty looked at which he was happy was just superficial...PHEW! So my diagnosis for Lefty was Infected Seroma which was drained and I was put on IV antibiotics and kept in hospital for 2 nights.  I can't explain the relief I felt when I was in hospital being treated by my own surgeon! He also confirmed that all the tissue removed during the operation was clear of any pre-cancerous cells...DOUBLE PHEW!!

So, today is my last day of antibiotics, I feel better in myself but still have some pain and a lot of tightness.  The tightness I think is normal. And Lefty is till red, but I have an appointment on Thursday (5 weeks and 8 days post-op) back in London so we will see what happens when I go down then.

I was so relieved to find that there was actually something wrong as sometimes you start to think, "Is it just me? Am I being mard? Is it normal to still be feeling like this so long after the op? Why does everyone else seem to be doing ok, but I'm not?"  This is why this post is soooo long, which I apologise for. But I want anyone else reading who may be feeling like I have been that it is quite normal, especially if there is a problem with healing! This infection has put my recovery back a few weeks, I'm still not driving and can't imagine getting behind the wheel this side of Christmas to be honest! But I do seem to have been able to come out of the "low" that I found myself in. I am getting around a lot easier now, and even managing to do a bit around the house (not too much though!).  It really is a case of listening to your own body and knowing when to start and when to stop.

If I don't manage to update before Christmas I wish you all and your families a very merry Christmas and a healthy and Happy New Year! And would like to thank you all for your support, it really has been invaluable!

Thank you for reading, as always please feel free to comment and share.

Lots of Love

Wednesday, 21 November 2012

16 days Post-Op...

Well here I am, just over 2 weeks later and so much has happened since then! I have to be completely honest and let you know that I am still in an incredible amount of pain, but I am still hopeful that this will subside in time.  I was told to give myself at least a month before I notice any let up in the pain.  At the moment it feels like a really severe case of Mastitis, crossed with the feeling that someone/something is constantly applying pressure to my upper chest.  Then there is the soreness at the sides, the swelling, the inability to sleep comfortably.  Then there is the frustration at not being able to do anything without the risk of being completely wiped out for the next couple of days! Not forgetting the fact that I need help to apply my own personal hygiene!  I tried to have a bath last week...what a fail that was! I managed to get in no problem, but getting out was quite a different story! My mum had to help me, I was able to get in fine, I just went on my knees and lowered myself, but could I get out? Could I boot!  I don't even know how I managed it in the end, but I remember mum joking that we would have to call the Fire Brigade to help...My response to that was, "cover my bum!".

I went to my post-op check up last Thursday and my surgeon was quite taken aback by the amount of bruising on my right breast, in fact his response on seeing them was "ooh poor you"! He tried to drain the bruising but was only able to get a little bit but from that he confirmed that it would in fact disperse on its own. And that it has! The bruising has gone down quite a bit since my appointment...thanks goodness!

Another thing I have really been struggling with is the fact that I was told to stop taking my HRT for a couple of weeks following my op.  This is to reduce the risk of DVT.  However it enormously increases the risk of horrendous hot sweats and terrible moods/weepy sensitivity! I have been nothing short of horrible to my gorgeous son, I just have not had any patience with him what so ever. For that I feel terribly guilty, but I really do hope that is behind me now as I have been able to re-start my HRT 2 nights ago! I have also been experiencing what can only be described as "spontaneous crying"! Again, I hope this is something that will eventually fade.

I have to say Monday was a particularly bad day with regards to pain and mood. So much so that I even spoke the immortal words "I wish I'd never had the f****ng operation!!"! I know that this was just a spur of the moment outburst and that when things settle down I will not be thinking like this atall, I will be thinking straight!  The pain, frustration, tiredness and inability to do things for myself just became too much and this is how I reacted.

I know this all seems very negative at the moment, but this is how it is I'm afraid...Well, for me anyway! I'm not really a good recoverer of operations, and I know everyone is different! Please bear this in mind if you are reading this and have yet to go through surgery! I don't want it to put anyone off, I just want to write down how I'm feeling, I'm sure there will also be people reading this who know exactly where I'm coming from and can totally relate to it, and can say that there is a light at the end of the tunnel and these feelings wont last forever, which, realistically, I am sure they wont!

Today is a better day, today I am just tired....don't get me wrong I am also in pain, but today I can cope with it!

And so, my next appointment at the hospital is in 4 weeks time, my surgeon wanted to check out the bruising and swelling before arranging an expansion (at the rate I am going, I won't need one! I am currently the size I was pre-op!). Unfortunately I didn't have the tissue results at my last appointment as they weren't yet back so I will, I guess, have them at the next appointment.  I also had the dressings removed, although underneath I still have steri-strips.  I spoke to my BC Nurse yesterday to ask about whether I have to remove these as it is such a long time before my next op, but was told that they would eventually fall off anyway, then I will see what is underneath.  It concerns me a little not seeing a nipple, but I had a dream last night that they were all finished and they looked fab so I know it's only a matter of time before I get to that point as my surgeon is the best!.

Next time I write I will be sure to be more positive ;-)  I have been photographing my journey so I can see the difference and improvements :-)

Thank you for reading :-)
As ever comment, share, tweet.

Lots of Love

Saturday, 10 November 2012

5 Days Post-op...

I guess I shouldn't be doing this just yet, but as I have the laptop at me knee to pay some bills I thought I would give a quick update.  The operation went well, and the surgeon was happy with the results. Although there was significant bruising and swelling on the right side which he thought I may have to return to theatre to have drained, but thankfully it sorted itself out!  Surgery was on Monday (05/11/2012), I went down at 11.30am and remember waking up on the ward at around 7.30pm.  I was in recovery before going onto the ward but can't remember how long for.  I came home yesterday after having both drains removed, even though they were still draining a fair amount of fluid!  But I have an appointment next Thursday back at clinic for my post-op check. This is where, I believe, I will also get the results from the tissue they removed and sent for testing.

So, after all the hype leading up to the op, how do I feel now??  Lets go with the negatives first, bearing in mind the surgery is only a few days old!

I am tearful - Sometimes I just burst into tears for no particular reason! As soon as I walked through the door at home I burst into tears into my mums arms!
I can't get comfortable in my own bed - I want the hospital bed back with all its lovely support! I know I can use pillows but it just isn't the same and I keep slipping down the bloody bed!
I feel like I have pulled muscles in my armpits - Could be due to the fact that my muscles have actually been pulled! They now cover the expanders!
I'm so sleepy! - I only have to go up and down the stairs a couple of times and I'm absolutely whacked!
The tight "band around the chest" sensation - constant, uncomfortable. It's like wearing a tight strapless bra all day and night but you know you aren't going to get that "Ahhhhhhhh" feeling when you take it off because you can't!

And for the positives?  Well apart from the blatantly obvious (for those who are not clear, that means being Breast Cancer Risk (virtually) free) I am only experiencing the "ooh no work on Monday" feeling!  I am waiting for a big relief moment to hit me, but I don't know when that will be...When I'm not in so much discomfort? When my screening appointment would be due (January/February)? When my reconstruction is absolutely complete? When I reach the age my aunty was when she was first diagnosed (5 years away)? Who knows, but I'm sure it will come!  It certainly isn't something I'm going to rush or force upon myself.

And so that is how things are at the moment.  I know that with each day I will get stronger and cope better.  I can tell things are slowly improving from the exercises I am doing daily.  Tomorrow I will be watching my beautiful son take part in the Remembrance Parade in town with his Cadet detachment.  I will take a chair in case I need to sit down, but this is something I will not miss for the world.  He makes me so proud!

I will return after my next appointment to update, but for now, thank you all so much for reading and taking an interest.  Please feel free to comment and share.

Lots of Love

Friday, 2 November 2012

3 More Sleeps!

Well, I feel it's only right to update my blog as D-Day is looming at an alarming rate! I can't believe how quick November 5th is approaching! Since I last blogged I had my BYE BYE BRCA BOOBS party in aid of National Hereditary Breast Cancer Helpline and raised an amazing amount...£436! I also had a lovely email from a local shopping centre to say that they would transfer half of the donations they collected in a Breast Cancer Wishing well located in the shopping centre to the helpline which was more than £500! An amazing result which is very welcome by the helpline.

So, how am I feeling now it's nearly here. I've got to be honest, I keep having moments where I am just on the verge of tears, and occasionally I've just let them come!  A couple of weeks ago was quite an upsetting time. I just couldn't stop crying.  My boyfriend, Andy, and I went for a drive and one thing he said, put it all into perspective..."We either face this task, or battle Breast Cancer, and I know what I would rather do".  Sometimes, someone says something that you will never forget, this was one of those times. To have that support is invaluable.  And I've got to say, since then, I don't think I've cried as much.

One thing I think is going to be strange after my surgery (apart from the obvious!) is that, although I will still and always will be a BRCA1 carrier, I will no longer be at risk from Breast Cancer.  This risk is something I have lived with since I tested positive 7 years ago, so it will be quite strange the risk not being there anymore! It's quite hard to explain, as in a way, I kind of feel special! I know this sounds absolutely bizarre!  But it's something that instantly bonds you to other BRCA carriers. Its like people who you went to school with, you always have that bond with them...same same :-).  But I know that bond will never be broken, and I am so lucky to have made some fantastic friends who I have got to know through inheriting this gene.  That, I will be forever thankful to BRCA for!

So tonight, I have more or less packed my case, apart from a few last minute things.  We will be travelling down to London on Sunday, ready for surgery on Monday morning! So I will sign off now, the next time I log on on I will Breast Cancer risk free! :-)

Thank you for reading, and as ever I welcome your comments.

Will report back soon :-)


Tuesday, 9 October 2012

Tomorrow's another day...

So, here I am, it's 12:40 am and I can't sleep. I feel I should, as a blogger, capture the crap times leading up to my op as well as the good times.  Well, that's what it's all about surely?  For anyone else reading who has been through/is going through similar, I want them to know that it's not all roses and "Oooh not long now :-)" thoughts. Sometimes it's pretty damn sh*t!  Take tonight for instance... I have been fine, I came home from work (which is going pretty crap at the moment...Staring down the barrel of a loaded redundancy gun but that's a different story!) to my lovely family, had some great news concerning Mum and the buying of her new house, (should be complete within the next few weeks), had tea, sent my boy off to Cadets for the evening, watched a bit of telly and that was it really.  No major dramas, nothing to write home about...so bed time came and oh my word, if I didn't know better I would say someone had slipped a "Wide Awake And Have Crappy Thoughts" pill in my brew!

Let me put it bluntly, I am terrified of what I am facing in 4 weeks!  I hate the way I'm feeling about it... I hate the way I'm feeling about feeling about it! I have absolutely no doubt that what I am doing is absolutely the right thing for me at this time, so why am I so damn scared?  I'll tell you...

I'm scared that the thing I am trying to protect myself against may have already developed. I'm 37 and have been so damn lucky to get this far in life without having been gripped by it already that I think, "Maybe it's started now?!" And what will happen if it has?  How will it affect the reconstruction, would I still have to have treatment?  God, writing it down it seems ludicrous, so at least I did the right thing taking to my blog, as now I can lock that thought in the box and try and forget about it.

I'm also scared of how it will affect my relationship with my boyfriend. Don't get me wrong, my boyfriend is extremely supportive and 100% behind me in my decision, and I love him with all my heart, I'm just scared of how I'm going to feel after. Some people reading this might think, "Why are you putting this out there for the whole world to see?".  Simple.  I want other people going through what I am, who may be feeling like I am, to see that they are not on their own, and that maybe, just maybe, being scared of how this massive change will affect us, aesthetically and psychologically, is quite possibly, perfectly normal!  No doubt if I was to be assessed by a Psychologist at this moment in time, they wouldn't let a scalpel wielding surgeon anywhere near me! But I would have to argue that no matter how much I need and want this surgery, I wouldn't be human if I didn't experience moments like this leading up to it!  So there!

If I'm honest I have felt like this for the last couple of nights.  It's when I get into bed... these thoughts hit me like a ton of bricks, then my eyes start to prick, then I cry, and try and hold it in.  Then I get angry with myself because I can't sleep, then I'm tired the next night and it starts all over again.  I think I just need a good nights sleep.

 If any of you reading this have had similar feelings I would love to hear from you.

I apologise that this hasn't been an upbeat read, but sometimes, this whole thing isn't upbeat...But...Tomorrows another day.

Night Night, and thank you for reading, and as always, I welcome all your comments.


Thursday, 13 September 2012

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!  :-)


Saturday, 14 July 2012

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"


Friday, 4 May 2012

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

Thursday, 26 January 2012

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...

Saturday, 21 January 2012

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 16th 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