92. Feeling nippy

Meanwhile, in the time machine of breast reconstruction, 8 months have passed since I became the owner of my second pair of nipples.  Not sure I ever imagined I would have more than one set in life, but there we go.  Bizarre sentences have passed my lips on more than one occasion on this journey to full breast reconstruction.

Early on I had some troubles with my nipple stitches being taking out slightly too early and my nipple flaps coming undone a little.  The nerve exposure was so painful I ended up in A&E and given Tramadol.  Marv!  I dealt with my own dressings for a month until they were fully healed and now, although completely different shapes and sizes, they are settled and ready for tweaking (*snigger) with a surgical knife again.  I am a little pissed off, as I was ready to have my second instalment of fat grafting done in February.  I was bumped down the list and now probably off the list as I was too busy with exams and coursework to have any further surgery.  The fat grafting was very successful! Two matching boobs. Perfect! 

91. Operation Finale : Phase One = Complete

I'm lounging in bed with lots of pillows, cups of tea, Jurassic Park and moggits.  Two days ago I went in for my (take a deep breath......) bilateral breast reconstruction liposculpture fat grafting, nipple reconstruction and dog ear revision surgery.  Basically, I had my lardy bits pummelled out and pumped, very expertly, into my reconstructed breast tissue, had the ends of my scars snipped off and finished and had some nipples made from my own skin, which all took 4 hours.  I'm still a little swollen so it will take a while to see things settle down and I go back to see comedy surgeon in 2 months time for a review.

I've been hanging onto an extra 8-10lbs I gained over the summer (thank you implant) in anticipation of this surgery.  It doesn't look like much but they are much fuller, about a whole cup size and instead of being empty in the top of the bra cup, they now meet the material and fill the cup - AMAZING!!  From a 35A to a 36B again.  I may lose 50% of the fat injected but that is remedied by one or two more liposuction sessions.  I've never posted photos and I plan to dedicate a whole blog post  from the beginning to the end when I'm complete, like closing the book on things and demonstrating visually just how amazing plastic surgery is these days.

My breast reconstruction was 3 years 7 months ago now and over the last 2 years, after being passed to the Plastic Surgery team, I have developed a really relaxed and jovial relationship with comedy surgeon, an expert in the field of breast reconstruction and correction of breast asymmetry.  He treats me like a person, not a lump of flesh and we have a good laugh.  He knows that I expect his very best work and I know that he gives it.  

I was very impressed with his plastic surgery team, one very handsome surgical assistant and one very handsome anaesthetist - sweet!  The anaesthetist team were excellent, introduced themselves to me individually as I led on the operating table. 

Handsome anaesthetist put a cannula in my hand and joked about stuff whilst everyone else hooked me up with sticky monitor pads and tubes.  Then I had the G 'n' T drowsy stuff which always makes my heart race.  It could make you feel panicky if you let it but you have to breath deeply and relax and go with it, you are in expert hands.  They then give you the proper stuff and you are gone in seconds.  The next thing you know you're in the recovery ward.  I'm not sure if someone sits with you the whole time you are still under, waiting for you to rouse from your induced sleep, but there has always been someone right there when I wake up.  It is so comforting to have someone there.  I talked gibberish but knew where I lived and my name so that was good news.  Then, as if my magic, I am on a ward, so I guess I passed out again and missed the trip through the hospital corridors and lifts.  

Two hours later I was starving and eating cheddar Burts crisps with my husband by my side, then felt nauseous and my nose was mega itchy, so I must have had morphine somewhere down the line.  Anti-sickness and anti-itching pills were administered and 20 minutes later I felt much better.  Hooray for not eating the meatball dinner.  My backup chocolate and jelly worms would came in handy.

I bummed out on the bed lottery, the only one on the ward without a TV and a dodgy bendy light with a broken switch.  It was also closest to the toilets and right next to the nurses desk. The snoring, coughing, painful moans, old man shouting, toilet visitors and general chit chat was never going to let me sleep.  My phone had died just before I'd gone into surgery so I had no music at all.  I was left with my earphones so I stuffed them in my ears anyway, ate chocolate and jelly worms, did puzzles and drank Horlicks at 3am until I finally got to sleep, 4 sweet hours of it.

The pain is minimal unless I move.  I don't visibly bruise much but they are beginning to come out over my hips, outer, inner and backs of my thighs, under my boobs, my belly, and my boobs themselves with some uncomfortable swelling at the ends of my dog ears, but generally things went very well and my boobs are looking fuller and more even.  I can't wait to meet my new nipples next week! It's going to be bizarre!

90. Pre-Op for the Finale (Phase One)

After a second night of insomnia and only 2 hours sleep I had to get up for my Pre-Op assessment on Thursday.

What is a Pre-Op?

Pre-operative assessments involve blood pressure, weight, blood, swabs and a chat about medical conditions. I can highly advise taking an 8am appointment if you can, as with doctors surgeries, the team gradually run late by the afternoon. I have, in the past, on a number of occasions now (I am getting old hat at surgery now) spent over 4 hours in a Pre-Op Assessment ward with an afternoon appointment. Hot, stuffy, boring as hell. My 8am appointment was over in an hour and half, brilliant stuff and the best experience of Pre-Op yet.

6.45am  Alarm...eurrghh!

6.55am  Cup of STRONG coffee

7.10am  Lashings of anti wrinkle cream

7.35am  Out into the crisp new autumnal air and into the 8am rush hour

7.45am  Discovered the 8am commuters are grumpier than 9am commuters and way more aggressive.  How rude!

7.58am  Arrived at the hospital and was spoilt for choice with parking spaces, this is a rare, rare event and I liked it.

8.01am  Entered the doors to a gentle world of fresh shift of hospital staff willing to help, smile and direct me to where I was supposed to go.  Felt sad that most would leave feeling knackered and frustrated having walked past some of them clocking off and going home on my way in.

8.03am  Arrived in the peaceful and friendly Erme Ward, filled out my form and took a seat, watched the Paralympic hand cycling.

8.10am  My name was called and the poking and prodding commenced.

Step One: Blood Pressure & Weight

Having just driven there with a bunch of aggressive driving commuters, I wasn't completely relaxed, plus I always get a little anxious entering hospitals. It always baffles me why they do this bit first for that very reason. My blood pressure was fine, 112/75 (blood pressure explained), but apparently I should have been dead with 238 heartbeats per minute!! Holy cow! Thankfully the machine wasn't working properly, so it was the old fashioned wrist and watch beat count = 75bpm. Phew! I was still alive!

The next bit was the depressing bit, the weigh in. I think all weighing scales in hospitals make you heavier than you are. I had an progesterone implant put in 4 months ago, and suddenly put on 8lbs in weight, which is good for my upcoming surgery but highly unusual for my stable weight record. Back in November 2011, comedy surgeon was concerned that I didn't have much fat for him to work with for fat transfer. I can officially confirm that he now has plenty to suck out and juggle around.

Step Two: Chat & Questionnaire

I ramble at this part. Sat in room with a closed door and a nurse, there is a 4 page questionnaire that the nurse goes through with you, asking about eyesight, allergies, previous operations (which I find weird as they have records of these..surely?), mental health etc. It is this stage that I realise I'm pretty healthy at 39 years old and feel lucky to be that way. The nurse was a lovely lady, we laughed a lot and found out that she had never had a general anaesthetic - lucky woman!

Step Three: Bloods & Swabs

The blood and swab nurse was lovely and chatty.  She took my nose, throat and groin swabs for MRSA tests and took my bloods.  A few pokings, a small scratch and a nice compliment about my dress later I was done, free to leave.

9.35am  Walked out of the hospital feeling good.

9.37am  Walked past the medic team waiting for the air ambulance to land.  As it landed about 50 feet away, a sudden upwelling of emotion came over me as I remembered the day my ex-fiance didn't quite make it to hospital in the air ambulance that tried to save him.  He died as it landed on the helipad at Salisbury hospital after a big RTA.  That day I should have been driving, not him, that day I was spared my life or serious injury at least, and although I have endured other battles, I am still here and I can still fight them.  My mortality is very real to me.  Most people don't think of death but I am very much aware that I am alive and I want to feel it everyday, not sit when I am 80 and realise that I sat on my arse, watched tv too much, stayed indoors, never took risks, did nothing with the time I had here on Earth.  I shed the tears that came from nowhere from the moment, wished the person inside made it, and then sat in my car and smiled to myself remembering some good stuff and then made my way to work.

The countdown starts here for Finale: Phase One = nipple reconstruction, back scar revision (part 2) and fat transfer for breast augmentation (amending one flat one to match the other with a little extra pillow plumping).

Weeeeee!! Here we go!

89. Sporty stuff - the challenges and limitations

There are a number of posts that I have been meaning to write recently.  This one is about sport.

When I was a kid, I lived on a bike, dangled from trees, swung on ropes, ran like the wind and hid like Harry Potter in his Invisibility Cloak.  As a teenager I hit balls with bats and sticks, threw them into nets, chucked balls and discs and ran like the wind.  There was majorettes, swimming, rounders, cycling and hockey.  I loved competing and being outside exercising.  As a grown woman I had discovered big kites, cycling, snowboarding and sea kayak paddling.  I have always been involved in sport, whether participating personally or team supporting someone else.

Three years ago my LD Flap surgery stopped me in my tracks and left me very frustrated.  For those who have been through the same surgery or are considering it, my journey has been particularly hard, probably because I am an active woman and the limitations, long-term and short-term have been noticed more than someone less active. I thought it would be useful to list all the sporty things that I feel that I can now do, what I have tried and what I have pondered about.

Snowboarding

Awesome!! I had to develop a method to get up on my toe edge as heel edge standing from sitting demands too much from my arms, shoulders and pectoral muscles.  The falling bit freaked me out too, with outstretched save my face arm landing jolts my whole chest and I get horrible spasms for hourse after.  The key is....don't fall over.  Yeah! Right...so..I don't snowboard much but I will come back to it again.  I guess skiing would be far easier and a defo yes!

Mountain Biking

Yes!! I now regularly go out riding cross-country and downhill mountain biking.  The suspension in the forks of bikes now means I don't have to absorb all the bumps.  Push ups for downhill can get a little sketchy on steep parts and I need help so I always ride in a group.  It's so good for you, I can get aerobic exercise, toning and fresh air all in one.  I adore my bikes!  The body armour is comfortable too, which I was concerned about but I wear IXS 2012 women specific armour and it's big but robust.  I have taken a few tumbles and just get minor bruises and I know that my precious boobs and scars are well protected when I fall.

Surfing

Ummm...nope! Well, on a surfboard anyway.  I guess bodyboarding (spongeing) with fins would be okay as your legs do the paddling work instead of your arms.  I had to sell my surfboard (which my hub bought as my wedding present) after I realised there was no way I could board surf anymore.  The strong paddle required to get into a wave is something I just can't do now.  My arm pull is weak and I would spend most of my time frustrated at not being able to catch a wave.  I have lost all desire to be in the water with my lack of swimming stroke strength these days.  Gonna stay safe on land!

Kite Flying

Weeee!! I can still fly a 6ft kite no troubles, but for smaller periods of time.  I have flown a 3.2m kite with a harness to take the pull out of the gusts and this is fun. So glad I can still get excited about the windy stuff!

Swimming

Yippee! I was surprised that a few lengths of breast stroke didn't bother me.  Before my nerve cutting surgery to reduce the muscle spasms, I couldn't have swum anywhere for very long.  Backstroke and front stroke are not ideal and hurt, crunch my crunchy shoulders and I stick to breast stroke or lie on my back and just kick.  It's nice to be able to still swim, I have to say.

Sea Kayak Paddling

Yes! Although I now go with my husband in a double kayak, I am fit and strong enough to take short paddles a few hours at a time, in a single kayak, in less choppy conditions.  This activity always needs lots of planning for tides, wind and general weather conditions anyway but extra planning for locations and routes is now needed to make it safe to cope with.  Too many accidents come to paddlers who don't take time to plan or carry all the right equipment with them.  Stay safe kids!

Tennis

Maybe? Not tried but I imagine it could be okay now that my twinges and spasms are gone.  It's a very strong arm movement kind of sport, those which I actually avoid if I can and I have never had the urge to play tennis, badminton would be much better with lighter rackets and objects to hit.

Yoga

Yes, although I have some restriction on full stretches, this is the best thing I can do for my body to keep it supple and flexible.  Piltates is stronger but also advised by my physio.

Aerobics

Hmm...I haven't attended any but most classes cater for your limitations and it would be good to have a chat before you join to make sure that they can help you get the most out of sessions.

88. Podge, Pondering & Self-Esteem

For the last 3 years I've enjoyed some hard earned emotional respite and peace from my genetic breast cancer worry.  Facing more surgery in the not too distant future has new and interesting mental challenges.

Podge  Since comedy surgeon gave me strict orders not to change my current weight in preparation for my fat transfer surgery, I've struggled a little.  I am currently fluttering around my trigger weight, the one that normally makes me kick my own arse into action and exercise more and eat less shite.  Looking at the scales everyday and knowing that I can't lose any of those 'oh my god, sort it out love' pounds is, quite frankly, bizarre!  It's made me learn to accept that being a little fuller figured is okay.  Age may be playing its part here, having recently edged ever closer to big  4Oh my god! 

Pondering  People are like teddy bears; they are nicest when they are brand new or when they're worn at the ears and nose from years of love with stuffing knocked about from many adventures. I had my stuffing pulled out by my surgeon and it is one of the biggest adventures of my life, both emotionally and physically.  I have lost and gained (not talking the extra poundage here) along the way.

Self-Esteem  Most women struggle with their body image and I was once one of the many. I had such a negative view of my body and I forgot how to be feminine, how utterly sad. In the past, years of school days bullying by boys teasing on the size of my curvaceous rear end and the teasing that continued by a man that I once loved, damaged my body confidence deeply.  It took years of comforting words from my incredibly caring and loving husband to change that, but it wasn't easy, I had to believe he meant it and I had to allow myself to feel it.  The problem with being BRCA+ is that once you know your genetic status you have to choose to either stay as you are or chop your breasts off.  The latter comes with major issues, body image issues involving risks, scars and body changes that some cannot face. I know a lot of very amazing BRCA+ women who have been through the mangle with surgery and their emotions. They are more beautiful than they ever imagined, radiating confidence, living life, loving people and being free despite being scarred mentally, emotionally and physically for life. 

There is something incredibly liberating about facing your own mortality and flirting with your survival instinct. It is utterly priceless - a life adventure. Most people who have pulled a mooner in the face of death tend to live life fuller, love deeper, risk more, are kinder and more forgiving of others.  Thats the way everyone should be, but it takes some major event to scare the shit out of you before you take a long hard look at yourself and what you feel about everything.

What was the purpose of this blog post? Just a vent, another fugly morning mirror look at myself and sorting it out for the day moment. How being a little podgy is not the end of the world, that I've come a very long way and I'm not who I used to be.  What a fabulous thing!  I wouldn't change any of it.

87. Plumping my pillows

What an absolutely gorgeous day it was today.  As I drove around the fringes of the city towards the hospital, the school kick out traffic slowed my pace.  I was able to people watch a little and sat perched on bus stop benches in the sun were women in colourful skirts, exposing freshly shaven legs - with freshly cut and blood scabbed shins.  Lovely!  Guaranteed, the minute the sun comes out, the first 'exposure' shave will end in tragedy with blobs of tissue stuck all over the place to stop the never ending bleed that comes with a razor skinning.  

As usual, nowhere to bloody park.  I drove through every single car park in the hospital grounds before I found a spot, where I wasn't supposed to park.  Sod it!  On entering the Outpatients some woman was ranting about photocopying a piece of paper, which obviously needed the attention of ALL FOUR RECEPTIONISTS AT ONCE!! Two other patients and I waited a polite little while until I wanted to shout, 'Get the fuck on with it will you!!', but I didn't, I'm too pragmatic in such situations so I just stepped right up to the desk and forced one of the receptionists to deal with me.  She stretched with here hands on her face and yawned, "Can I help youuuu?".  Rude cow.  The usual security questions were asked.  Security, seriously? If anyone wanted to steal someones identity, just hang out in Outpatients where patients reel off all manner of personal details aloud for all and sundry to hear.  Good place for stalkers too, phone numbers given out and addresses - genius NHS, utter genius...

For once Waiting Room 2 was nearly empty and the open window seats were free.  Phew, it was hot - like 22C hot, nice for outside but not sat in a stuffy hospital.  Comedy surgeon was late but I did't mind, I was twittering to some funny ladies and looking at the people as they were called for their appointments, one by one, emptying the waiting room further.  Finally it was my turn.  Into the small room I've seen many times before along this journey but no gown today which can only mean no boob flashing.  This was a first, I often feel exposed (of course) and talk a lot with nervousness when I'm half naked in front of two men who poke and squeeze my boobs.  Comedy surgeon and sidekick surgeon entered the room and smiled with familiarity and I felt comfortable.  I proudly announced that today we were going to talk fat transfer.  He flicked though my two inch thick file and his notes, nods and mumbles then told me to stand up so he could check me over for wobbly areas.  Thankfully I'm harbouring enough lardy bits (thank you cake, pizza and revision laziness) to make the operation possible, but I am not allowed to lose weight.   

We discussed the downsides of the surgery; possible infection, cysts, fat necrosis, loss of fat cell percentage (30-50%), uneven breasts, bruising and soreness.  I have to stay in overnight for the first procedure so they can manage the pain levels.  I'm sure it won't be that bad, nothing can compare to what I have already been through with my first surgery.  

The positives of this type of surgery are that the fat transfer is natural and good results are achieved.  The fat that forms new blood supplies in the breast tissue will stay forever and change with my weight, which is one of my big issues, and I will gain volume in the upper part of my breast too which will help fill a bra cup more fully.  Obviously I will have a more svelte bottom, thigh and tummy region where they liposuck (sp??) the fat from and bigger boobs.  Yay!

The first procedure will take 3 hours maximum as my nipples are being done at the same time.  The second and third procedure will just be fat transfer via liposuction so I can grow some more podge in between each session (about 2-3 month intervals).

So, by Christmas I might look more like Dolly Parton and less like Popeye's wife, Olive in the boob volume department.  No, seriously though, I will be happy to gain a cup size and some fullness so I can go back to normality, as close as I will ever be.  Just waiting for the appointment now and I am excited!  

86. Fat transfer appointment...tomorrow!

Note:  All links used in this post are NHS pdf files and previous posts within this blog.

After a couple of phonecalls to comedy surgeon's secretary, an appointment arrived promptly in the post.  Tomorrow I go to meet comedy surgeon and discuss my fat bits (joy!).  I've been holding off reducing my wobbly bits in anticipation of this meeting.  Hanging on to the wobble for a few more weeks.  Never have I been happier about saying, "yes, I have fat bits, isn't it great?!!".

My risk of breast cancer was so high, 85% high and after three years of waiting for everything to settle down after my LD Flap breast reconstruction (you can read more here) I've finally arrived at the end stages.  I lost a whole cup size and a couple of inches through my surgery, despite being told they would use small implants if the muscle, skin and fat was not enough to match what I had before (I was a perfectly formed 36B when I was a complete woman) yet they were never used.  I'm pretty pleased about that, I never wanted implants anyway but I never expected to be so much smaller than I was.

From the front I look even and proportioned and they appear even but a side profile reveals the loss of volume and I can't find any bras to fit me.  The left is much flatter than the right.  Tomorrow I will go to get measured for a bra fitting and take that info to comedy surgeon.  I'm 63kg at the moment (about 3kg over my norm) and even that small weight gain makes me feel flat chested.  My body spreads its weight well, I'm an all over girl, but my breasts never change size with the rest of me.  I didn't realise how much that would bother me and it was never really explained that it would happen.  The reason is due to the location where the skin and muscle was taken from; my back.  Most people don't put much weight on their backs, unlike TRAM Flap which is stomach fat and muscle, an area where women tend to gain weight easily.  Fat transfer may change this for me, introducing fat from areas of the body that store fat; hips, thighs and stomach and so, as the cells settle in, they will act as they always have, gaining and losing fat with the rest of me.  About 40-50% of the fat injected will be reabsorbed and several visits are required to achieve the results discussed.  The maximum increase is usually two cup sizes.

I'm a little apprehensive but quite excited.  Comedy surgeon has seen me change my mind a few times but this time it feels right.  My time is now, lets do this thing and get on with the rest of my life.

85. Justification for Cleavage

A bit of someone else's cleavage. 

Cleavage.  I miss having cleavage.

I would like enough to

a) wear sexy bras again
b) be able to nuzzle into

If you lost yours wouldn't you want it back if you could?  Well, at least you would look at the offer before you shut the door on it, right? This is a sore subject for some who have had less than sucessful surgery like mine, through implant rejection or cancer and I have deep admiration for those that have been truly scarred for life.  Those women will not scorn me for my choice but rather rejoice in the fact that I have the choice at all.  The whole point of knowing my BRCA1 genetic mutation was being able to choose between life (minus original boobs) and the gambling game of my life and cancer risk.  I chose.  I also get to choose again. I have been given the opportunity to play around with fat transfer for breast augmentation.  I know I said I wasn't vain enough to get them done, but let me explain that when I have tried many a push up bra on (used to be my favourite), I get creases, like old lady boob skin crinkling, going on instead of the full breasty-breastiness of real boobs.  Basically my top bit is a bit empty of boob.  Fat transfer can sort all those bits out a little.

The procedure can take up to 5 hours, its not easy, bruises will be a-plenty on the first visit but the fat is stored for the 2-3 revisits top up injections.  My hourglass figure has become more pear shaped these days and when I put on a few pounds everything puts on weight except my new reconstructed LD Flap boobs.  They look great though, I should be happy but saying no to this would be like waving goodbye to 'beautiful, what you used to have boobs'...forever!!  How can I resist?  Oh the vanity of it all.  I suppose this is the question to myself, am I fully justified? Do I need it? Why do I need it? Just because it is offered to me, should I take it?  I suppose you need to lose parts of your body before you can answer that question.  The answer to myself is, yes. The body sculpting part isn't even part of my justification or reasoning.  It's all about the boobs. Simple.

84. Before I actually say no to the boob plumping

I have just seen some fat transfer videos and can't believe how amazing the results When I was keen on this surgery a while back, comedy surgeon reckons it wasn't really worth it but that was a couple of years ago.  Now the procedure is more common, he is offering it to me and I thought I wanted to be finished as I am, but now I am not so sure.  Maybe I do want a bit of re-sculpting all round - as weird as that sounds - a part of me wants to experiment down the path of 'lets make your boobs bigger with fat transfer' (non-graphic fat transfer breast augmentation video here) and a fantastic before and after photo gallery of natural breast augmentation.

Now I know in my last post I said I wasn't going for this but my 'this will only be offered to you once, you only live once, why not' brain kicks in.  So, I think before I get trim for the summer maybe I should just relocate it instead? I am calling my comedy surgeon tomorrow and telling him I want the complete finish me off works.  A girl only has one life and although I am on my second pair of boobs, they could do with a little enhancing of the natural variety.  Fuck it, why the hell not? 

83. Time to get Nipple-tastic!

Time, as it does, has passed.  It's been nearly a whole year since I last posted and, as usual, its been a mixed bag of life, adjusting, accepting and blossoming in the esteem department.  The revisions that were done a year ago worked out really well (indentations now gone) but there is still work to do and I popped back for a visit to my cheeky surgeon about two weeks ago to discuss the end.  Not any old end, the end of my surgery (I hope) apart from the tattoo maintenance that comes with reconstructed nipples.

For the first time there was no woman present, which I thought was odd but it didn't bother me and I was introduced to the young male assistant I assumed was a doctor in training. 

My comedy surgeon to young male Assistant: "Now this, this is a very tidy breast reconstruction!"

I was unveiled for his perusal.  The eyebrows raised and a pleasant or surprised look crossed his face (probably a mix of both, it was hard to decipher).  He didn't say a word for the rest of the appointment - maybe I scared him a little, I can be a bit motor mouth at times, particularly when feeling nervous or exposed!

My comedy surgeon starts to discuss nipples, how they will be made, explains how they will STICK OUT ALL THE TIME.  Yes, I know this, but it poses a problem.  I hate wearing bras since my reconstruction.  Nothing fits, nothing is comfortable.  You go without a bra for 3 years then try and put up with one all day long...my god it is torture!!  Rip the bugger off at the earliest opportunity!  Bloody hate them - pretty things but not for me anymore.  And so the problem of permanently erect nipples.  How am I going to live with them?  I guess I will just have to let people stare and wonder what type of floozy I am to wander around without a bra on, letting my nips stand out for all to see, all the time.  Well, fuck them...fuck them all.  If they knew what I'd been through physically and emotionally in order to get them then they can friggin' well enjoy them too.  I am not covering them up all the time with a boa constrictor of a bra in order appease their narrow minds about women's undergarment choice.

To the procedure - here's a pic of how comedy surgeon will make my origami nipples:

Having done Graphic Design at college, this strangely reminds me of flat pack designs for packaging for toys but in real life, I've seen a friend's and they look amazing.  I just hope mine do to.  

As for boob plumping, I've been offered fat injections to make them a bit bigger but that might only last for 3 years, and the fat cells may not even take and I don't want to face anymore weirdness thanks.  I've decided that my vanity is not strong enough to want them bigger, despite old grievances about the loss of my perfect 36B breasts.  My new ones are lovely, forever pert, small but beautiful and they just need finishing off.  The ends of my 16 inches of back scars need rectifying again so that's booked in at the same time...UNDER LOCAL ANAESTHETIC!!  Local he said, where I am awake.  WTF? I did ask him if I would put him off with all my talking..and what if I sneezed?  I have no idea how this is going to work but he convinced me that I can in fact have myself cut up whilst I am awake..and I agreed.  Gas and air will be at the ready - maybe I need a training run on that to make sure I don't giggle my ass off (I can do that without gas and air) and end up with extra nipples.  I'm up for the challenge - at least I can keep an eye on them and, as comedy surgeon says, I will find it fascinating! True I guess.

So I await my appointment for the knife, again.  Hopefully my exams will be over and I can then get on with my summer and getting some areola tattoos done.  

The end is in sight.  Smooth and sticky out I shall forever be!

82. Unveil the revisions nurse!

A lot has happened since post 81. Bouncy Ball Therapy so I will try not to waffle on.

The update for today is really that I am fresh from a visit to see my GP nurse, after having my revision surgery unveiled for the first time. I can tell you, I am elated. I have suffered this last 18 months with my neck, back and muscle cramping spasms in my chest. I feel so much more comfortable today, despite the soreness and stickiness of my skin from removing dressings and sutures. The band of tightness has reduced and although it is still there all the time under my arms, my reconstruction breast muscle has been released from that spasm. I am relieved. I risked losing my flaps if the blood supply was cut by mistake but my surgeon did good.

Background story
SKIP if you know my story of reconstructed boob spasms and whining about neck pain. FIRST TIME readers - heres a brief low down...

It has been 18 months since I really re-entered life again after my LD Flap breast reconstruction some 9 months prior. I started Uni so I could retrain after being made redundant from my job. That was September 2009, and after only a couple of months back to a basic but normal life, I started to go downhill physically with weak back, neck and shoulder strength. I wasted a year of Uni because my neck was getting worse, not better and lots of typing and sitting down doing my computing course were not helping. I even had to rethink my career path because of my neck and spasm issues. I felt better being more active but without lifting weight or typing lots. I decided on an Extended Science BSc course and it has been challenging with all my appointments this year; with physiotherapists, doctors, surgeons, hospital, all on top of my studies but I made it through and did pretty well this year. Very pleased indeed!

To summarise, it has been a tough 18 months (with added complications which I don't need to bleat on about right now) but 7 days ago I had my 4 hour revision surgery with the lovely Mr Camp, my seriously wonderful surgeon. My overlapped nipple patch sections have gone - now smooth, my dog ears have gone - now smooth, lengthening my scars to about 8 inches each on my back and I have two new scars, one inch each, vertically, under each armpit through which the spasm causing nerves for the LD muscles were hunted down and snipped. I have decided to get some will be getting some photos posted soon of my whole process but was feeling a little shy before but I feel it is time to share it as I am quite proud of what surgeons can do for women in the predicament I find myself in by being BRCA1 positive.

I had my surgery at Derriford Hospital under the superb care, level headed and joking manner of Mr Camp, a plastic surgeon and the staff of Freedom Ward and Lynham Ward were brilliant. Short staffed but calm, friendly, helpful and kind. I stayed overnight with some great people under the weather with an interesting selection of different physical issues. An unstoppable nosebleed, implants balancing odd breasts, an ulcerated throat, a thyroid gland removal and a leg injury..oh and me with my breast reconstruction revisions and denervination of muscles.

Clean, infection free, comfortable overnight stay with extra helpings of toast and jam for breakfast please. You were all brilliant!

I, on the other hand, am healing very well and looking forward to going shopping for summer vests that I now feel I can wear without conscience of onlookers staring at my indented nipples patches (paddles) through my tops. I am still not sure if I will wear a bra again. So many friends have commented about how nice it would be not to wear one ever again and I am so used to it. I might just get some nude coloured covers like these after I get some little nipple bumps done - not sure I want anything too much of a nipple really - and these would help cover them up in sheerer clothing. Nipple Patch - Silicone Petals

81. Bouncy Ball Therapy

Unfortunately not a space hopper, just a regular gym ball :(

Finally I have a physio who really knows what is going on inside my body and has identified and recreated that tingling, numbing and insane stabbing pain I get in my elbows these days. Although she doesn't want to say the words "yes, this is a complication from your surgery", it is. She says the neck and back problems are from carrying my injury too long and sitting still too long. Obviously, the only reason I have been careful and taking it easy like everyone keeps drumming into me these past 18 months has been detrimental to my physical condition. I have been active, more active than most would like but have also had injuries from just doing things or overdoing things. Like carrying my laptop in my rucksack for 2 months, it screwed my neck. Moving a too-heavy-for-me bag of plaster finally tweaked it into lock up mode back in November 2009 but I think it was culmination of things and not just one injury, which is also the opinion of my physio.

Positive Recovery

So, this is a positive step, one towards a pain free world? Having a constant niggle in my neck is driving me nuts. It prevents me from doing so much stuff I could sit down and cry about it all but I can't, I just pop some painkillers and try and do my stretches and hope that it will fade over time.

Coping mechanism

I have a red bouncy gym ball that I use stretch out deep in my back. I have to stand in front of it with my wrists sideways on the ball and roll the ball up the wall, lifting my chest as I go. It may sound like bliss, and it is, for the relief that it gives me, but I now have to hassle my poor husband to massage my neck everyday. Over the day my neck muscles tense, more so because of the pain and so, if I don't manage it, I get sickening headaches and ludicrous tiredness. So boring.


Why do I hurt?


My physio says it is neurophysiological complication, trapped or restricted nerve movement through my neck and effecting my shoulders, elbows and hands. Problems with C1-C7 on the chart below, T1 and T2 problems seem to have relaxed now (middle back pain). She thinks the lack of movement has caused over-stiffness and naturally we will carry an injury but the last physio thought I might have a slipped disc so for the last 10 months I have been extra careful and made my situation worse. An MRI showed normal nerves thankfully but I still suffer and although my movement is better than back in November/December last year, I feels like it has just stalled now. I have good an bad days. Typing doesn't do me any favours at all and I suffer a lot after any reasonable typing session (like a blog post) and have to stretch out.



Neurophysiology: Hand and Elbow - Nerve Entrapment info

I hope this will finally sort things out, hydrotherapy in the pool with the hospital next week for a 6 week period of twice a week. Quite looking forward to it. I should stop there, my body is telling me to stop before I get all hunched up like Quasimodo on drugs again ;)

80. Its been 16 months

Well where has the time gone? Its been hard work. I have been dreading writing this blog entry, I never wanted to be an anti-reconstruction surgery patient but the last 16 months have been harder than I was really warned they would be.

I guess I am one of the few who experience problems after my type of surgery. My surgeon assured me that I would be able to paddle a kayak again, fly a big kite, return to normal but that it would take 18 months to be fully fit again. Here I nearly am, 16 months and I ache every day of my life and need regular massage just to relief the tense locked up muscles in my neck, back and shoulders. I take painkillers everyday just to get through my day because trying to absorb the pain just tires me out. Today I had those old deep crippling spasms in my back and chest, like a crushing band, contracting and taking my breath away. Why? I have no idea, just out of the blue.

In the last 8 months since my suspected neck injury, I am still suffering. I've had MRIs and nerve testing, blood tests and the results are good, there is nothing wrong with my spine or my nerves, its all muscle. My body is still trying to compensate for the lack of Latissimus Dorsi muscles and my doctor thinks other muscles have built up more than they would have been and I have inflammation and spasms, tendon soreness. He's referred me back to the physio for treatment. It irks me that I asked about specialist physio right after my surgery but was told that I just had to do the exercises on the leaflet they give all breast surgery patients. The physio (that I had to request to see during my recovery) told me I had 90-95% movement again but could not help me further to strengthen my body. Back then my back was fresh without lats and not in daily use like now. Over time my back, neck and shoulders have been under extra pressure to perform differently. My shoulders crunch and click and ache, I get excruciating pain shooting down my arms through my elbow joints and cramping in my wrists. My neck muscles knot up and ache, giving me headaches. My body has adapted but its not comfortable at all. I just want to cry.

I always dreamed of writing here to tell my success story of reconstruction surgery but this is not the reality. My reality is that I a paid a price for reducing my breast cancer risk, not only did I give up my beautiful breasts but I have been advised by my doctor not to paddle or fly kites, which contradicts what my surgeon told me. I am trying not to feel bitter or go on an anti-LD Flap surgery rampage but I feel bloody close to it. I am angry right now. I am limited in the work I can do. Even typing gives me neck and shoulder ache. I am currently living on Employment Support Allowance and after being assessed by some doctor contracted by the government to work alongside the Department of Work and Pensions, assessed me as ZERO, in perfect working order. Her rubbish and inaccurate report of my physical condition has meant I am undergoing an Appeal, having to prove my limitations physically and if they don't support me, I have to pay back all the money they have been paying me since February, yet I am a student and I have no money or income, even my husband works prat-time because of medical conditions.

I feel so let down. Not sure what to do with my feelings right now and just don't want to talk to anyone, feeling very insular. I just feel frustrated and trapped by the damned system. If I was 100% fit I would be out there doing shelf stacking during my summer or working in a bar but seriously, those jobs are just not gonna work - bending, lifting, pulling, pushing. I am so frustrated by my body, which was fit and robust and beautiful and now it just isn't. I just need some time to sort myself out and I guess, see how physio goes. *sigh*

79. Save our BRCA Support Group - BRCA Umbrella

I have a numb bottom and back ache. Been sat here all day long putting some serious legwork (more like brain and finger work) into raising funds to help save our precious online BRCA Support Group, BRCA Umbrella. Ning are closing the free 5000 member option with their social network and forcing a monthly fee on us. We can reduce to 150 members and far less function for the network for free but this is not an option. There are over 650 Members.


What is BRCA Umbrella? An online support group and community for those discovering and dealing with their hereditary cancer risk. I posted this to our BRCA Umbrella Facebook Page and Group:

"Save BRCA Umbrella now. Donate less than a cup of coffee or bar of chocolate. Its safe, secure, its via PayPal. Go without one treat to help our members who face their genetic lifetime risk of cancer (upto 85% risk). We are 1 in 1000 and we need each other. Few and far between but forced to seek sanctity in a place where others know just what its like to face difficult life choices, having a family or not, breast and ovary removal, screening etc. Our future is in your hands. Donate now. Want to sponsor us? Contact us for more details."


I have been contacting potential clients to advertise with us to help generate revenue whilst offering our Members relevant ad links to companies offering services or products they need, such as Mastectomy Bra or Lingerie Companies in the first email wave.

Fingers crossed we get it sorted soon. 




Sponsor us through advertising. If you have Cancer related services, products etc, you can advertise here or through BRCA Umbrella.

OUR STATS:

This blog site has had over 6,500 hits in 15 months. That's over 440 hits a day.

BRCA Umbrella has had almost 30,000 visits, 186,910 Page Views and an average of 6.5 Page Views per visit. BRCA Umbrella visitor stats average at 1,875 visits per month, 61 visits per day.

So, a lot of activity and therefore a thriving network, an alive network of people needing each other and so, in order to keep that place safe, I ask for donations from you. Just give up one small treat, a bar of chocolate or cup of coffee and donate now.


DONATE NOW! Visit the Chip In page to find our more and DONATE NOW!! Visit BRCA Umbrella Donation Page

78. Breast Cancer Care Family History Forum UK

It was a bit lastminute.com but I made it to London (UK) to the first Breast Cancer Care Family History Forum. It was so good to finally meet two of BRCA Umbrella's Administrators, Jennifer and Caroline (who escaped this photo unfortunately), and to catch up with Lisa, Elaine and Rian from last years Race for Life weekender. It was good to meet some new faces and sad to see so many women with this damned gene mutation.

It was was a very well structured day that started with human bingo as the icebreaker, an intro from the Breast Cancer Care team and then a much needed tea, coffee and biscuit break. The day's highlights for me were the break out groups, with me in the preventative surgery and gene mutation identified group. The first session was an hour of just general chat amongst ourselves, sharing experience and questioning each other about things. The second session was recorded and guided by a facilitator so we didn't veer horribly off track. She asked key questions:

What support needs do you feel are missing from the NHS?
What do you feel was missing from your surgery care by the NHS?
What would you like to see developed as a support system for BRCA community?

We talked of many things, like;

- being asked for moulds of our nipples for prosthetics before they get incinerated forever.
- being put in touch with some form of support group long before surgery is decided.
- having an MRI following a positive diagnosis for BRCA1 or BRCA2 or identified as High Risk.
- having the right to see any breast reconstruction surgeon anywhere in the country instead of being channelled into just what procedure your local surgeon does
- having regular face to face BRCA support groups to meet and discuss all these things and more with real, live people.

There was a great talk about Genetics by a specialist and she answered as many questions as we could fire at her. I think this highlighted the need for a proper forum to discuss these things with professionals rather than scaring ourselves witless with things from the internet!

All in all..it was brilliant. 50% of the attendance were BRCA Umbrella members and we wore our badges with pride, we found a way of supporting each other in the absence of such support, we made BRCA Umbrella the support community it is and it is time to step it up a gear! Watch this space!

77. Out of touch

I went awol for a bit there. Sorry folks. Nothing BRCA related, well, not really apart from the abnormal CA125 (ovary screening blood test) that came back and I had to retest. It is the first time I have really worried about my ovaries. With no evidence of ovarian cancer in my family history (even with the BRCA1 gene risk factor of 40-60% lifetime risk) I sit on my laurels about Ovarian Cancer and maybe I shouldn't. My doctor told me only 2 days ago that I just can't be thinking about ovaries just yet, or revision of my reconstruction scars, or nipples, I have to concentrate on my current health issues: neck and lumbar spine.

Yes, the saga continues. I have an MRI scan for both next Tuesday which I am actually looking forward to. My hip pain has worsened in the last year and my lower back pain that I used to ignore has now become a daily chore since my surgery. I think the lack of Lat Dorsi muscles have exposed an existing problem and it is time to sort it out. My neck is still troubling me everyday and even light exercise on the Wii saw me in agony for a week with daily massage and disturbed sleep. I am signed off at the moment and damned glad. Both problems make daily life painful and tiring...it is so boring.

Good news! My sinus infection cold appears to have passed (6 week companion) and my bronchial infection is mostly gone but is still lingering but I am using an inhaler for the first time in my life to see if this helps...or else it is off for a chest x-ray.

So, you see..i have more than enough on my plate at the moment, BRCA stuff will have to wait, which bothers me because it bothers me and I want to be on the complete list. I am more than frustrated with my lot right now. Well, them be the cards dealt, gotta live it out and all will resolve.

I would like to book a calm period in life please, a bit like a holiday where there are no worries.

I am frustrated to not be able to log my breast reconstruction progress in an ordered manner but that is just the way the cookie crumbles.

76. Nip n Tuck Cancelled

Has it really been 4 months since I last posted? Shocking!! It is because nothing at all has moved forward since my last post, in fact it has all gone backwards. They cancelled my surgery the night before I was due in. I was ready, after months of pondering, preparing for its coming, I was ready and again the rug was pulled from under me. Great!

I was so annoyed that I told them I couldn't go through that again in a hurry so not to rebook it within the next 2 weeks, my studies were getting busy and deadlines looming for assignments. A week later I got another surgery appointment - with a weeks notice. I sat on it for a while, waited for the confirmation message they always send to your home phone for you to accept or decline the appointment. At that moment I would decide how I as feeling and whether I could go through with it. I was so scared they would make things more uncomfortable or make my scars worse, infection etc. The day before the surgery I planned to call them and find out what was going on if I had heard nothing. I got a phone call at 11am from my PS surgeon's secretary and this is how it went;

Secretary: Hello. I am phoning to confirm your surgery is scheduled for tomorrow.

Me: Hello. Um, I haven't had the usual advance telephone message to accept or decline the appointment.

Secretary: Oh, I see..well are you coming in or not?

Me: I am not sure. I did ask for it not be scheduled so soon as my studies will seriously suffer. I can't keep messing about with my life.

Secretary: So are you coming in tomorrow or not?

Me: I would have to say no now, I am sorry.

Secretary: Oh great! You could have let us know sooner. Now we have a large gap in the surgery schedule!

Me: Excuse me? When I last saw my surgeon he told me not to worry about cancelling, he would read a book instead. He knew how unsure I was, how scared I am to come in again. He also said that they can take this reconstruction process at MY pace.

Secretary: Right. I shall take you off the waiting list then.

Me: Um, okay. I will go back through the system when I feel I can face it again. I am sorry but I just can't do it now, as I explained.

Secretary: (She hung up on me).

Me: How polite! I LOVE NHS secretaries, you are all SO people people!

I was livid! Livid! She was so rude. I don't think she gave a rats ass that I was seriously concerned.

No surgery for me for a while. I didn't have it done and I am still thinking about it. I think I will go back to the GP to restart the process in May so I can go in over the summer. I have a serious phobia about vomiting bugs and the outbreaks in the hospitals in winter just freak me out. Winter hospitalisation would be my idea of hell on Earth!

So I am still as I was. Well, actually that is not true. I am STILL suffering with my neck injury and 'YAY' I have to have an MRI scan. The physio signed me off back to the GP as she couldn't help me after 4 months. Recently I have had numbness, pain and tingling in my shoulders and hands - not good! I can't carry my laptop into uni anymore and driving is very uncomfortable. Bloody hell - give me a break someone??

AND on top of that I have the cough from hell. 5 weeks now. I lost my voice and then the cough started, antibiotics didn't touch it and I am not taking another round I was given by my GP, that would be 3 lots in less than 2 months! Nope. I have already picked up a snotty cold on top of the cough. My poor immune system is really suffering. Before September I hadn't had a cold for 6 years!!

What a whinge that was. Better out than in as they say! I hope to post some nicer news next time. Maybe Race for Life in Plymouth?

75. Physio, Tidy Up & Fix It Surgery

Happy New Year All!

I am joining the January surgery mob (other BRCA Sisters out there are also on the list and we step forward together). On 16th December I had an appointment with two Plastic Surgeons and two other doctors. Five of us crammed in a small room and all intensely talking about my breast reconstruction, my boobs. It is a thing you get used to. I have lost any kind of shyness I may have had about getting them out with the amount of viewings they've had!

I told them about my problems with tightness, spasms and pain and they asked me to do the side front, bend twirls.

My main Plastic Surgeon is not the guy who did my Breast Reconstruction and he said he needs to discuss the surgery and how it was done with the original surgeon. They are planning to de-nervinate my Latisimus Dorsi muscles which now form the volume of my breasts. They are both still reacting to movement and tensing. Sometimes I get twitching so strong I can feel it for ages after the initial spasm, like they lock up and stay hard. Today I am going to record a video of their magical moving properties so I can look back on the changes. I will post this in BRCA Umbrella for everyone's amusement! Remember the pec dance clips of the past? Maybe I can do a version of my own. I found one!! Check out this video ->


http://www.youtube.com/watch?v=8utKIVvxaPE

Risks: as the surgery to cut the nerves from my Lat Dorsi muslces that now reside happily and unhappily in my boob skin is detailed, they could potentially cut the blood supply to the muscles themselves instead of just the nerves. Not good but I have to take the chance.

Physio says: My pectoral muscles are too strong. This is pulling my shoulders forward and I seem to be getting more and more tingling in my hands and elbows like nerves are trapped. She made me do some moves that sent a stinging and intense pain down each arm right through my elbow to my wrist. Ouch! I have some moves to do to help stretch them out but the Lats help keep your shoulders back and without them I am compensating lifting with my pecs instead and seem to have overbuilt them. This explains some of my problems. I shall speak to the surgeons about her comments too. Something is restricting my nerves in my arms and causing the pain.

Will it ever end? Yes, at some point I will just say ENOUGH but for now I have to go forward. BRCA1 gene - You shit!

3 weeks now. I am looking forward to it and dreading it too.

74. Strong, Weak. Weaker.

I have reached the point of no return, I cannot continue with the pain and problems I am having without expert opinion. I am a head down, get on with it person and I was repeatedly told after my reconstruction surgery to 'give it some time'. Okay then, here we are. It has been almost 9 months since my surgery, more than enough time for things to 'settle down' as I was told. I appreciate that everyone is different and all surgery has it's risks. But, here I am, in pain and suffering with a weak back.

I am an optimist, I see the good in people, I hope for the best, prepare for the worst and expect high standards. I didn't think that I would face any problems after, I expected not to, enough nervous energy was spent worrying about what was definitely going to happen to me immediately after surgery.

So what's my beef? Can I describe it to you...?...um..yeah, okay, think of this:

Walk around all day with a rolled up sock under your armpit, your numb armpit I should say. Then when you pick things up your breast contracts every time, tightening right across towards and under the armpit trapping the rolled up sock in it.

Stuff on the floor? No problem, just crouch down with the knees crunching and cracking my clicky knees and painful ankles, repeat accordingly for everything. This is actually the way to lift sensibly but you don't realise how much you can just bend over without this method to just grab things. When I do this I find I stick my bum out loads (not a good look) and I get that trembling thing in my back muscles like when you lift things too heavy for you, that straining thing, just from bending over at the waist. I miss my Lats. I miss them. I hate to say I regret it but maybe I should have gone with the majority and had implants with less impact on my physical self. The thing is, my local surgeon didn't believe in that kind of surgery. I didn't feel I had much choice in the matter. This is what we do and this is what you get. That is not how it should be.

They did warn me I might have a weaker back but I didn't realise how much until I tried to get back to normal. At 9 months on I feel I should be able to get back into DIY and carry a rucksack into Uni without suffering for it too much. I'm all healed now.

The last 3 months since I have become more active and resumed life in the mainstream again I have noticed the pain, tightening, muscle spasms, back and neck ache and injuries I am now encountering more frequently. Right now I am waiting for the doctor to call me to see if I can get a relaxant prescription for my neck. 10 days I have been suffering, I can't hold my head up without a deep ache and twinge in the top of my spine. I think it's from stupidly lifting a bag of plaster at 12.5kg...dumb I know, but I did it. I used to be able to do these things, I was strong and I forget to adjust. I just think I can get on with stuff like I did before and recently have faced the truth, I am not and I have to change.

I need exercise and free parking when going into Uni so I park on the fringe of the residents parking zones and walk in with my rucksack. I chose a comfortable one but lugging it around all day takes it's toll. By the end of the week my back and neck is aching and seized up. This truly sucks. I can't afford to park closer and I need to walk as jumping around exercise is not on the list of comfortable sport activities for me. What do I do? I don't know, I am just fed up with it. If I do nothing my back gets weaker and if I do something my back gets injured.

So, 15th December for a review and plan for the next surgery, what my Plastic Surgeon can do to help (or not) and tidy up surgery.

Doctors appointment at 3.30 for a neck/back inspection and some relaxant drugs probably. Yay..not. Sick of pills..so sick of pills now.

73. I need your vote

I'm glad I've got your attention and now that I have, can you help?

I have a one answer poll posted in my sidebar (see right) and would like your vote.

The more who vote the more accurate the results.

I am interested to know why you read health blogs. That's it. Just click the answer that best fits you and click the Vote button.

The reason? I am writing an essay paper at University about the Ethics and Moral Conduct of Health Blogs. Your input will give me a better opportunity to understand why people read blogs about health related subjects.

Your help is greatly appreciated.