My Choice

Complete with tattoos

2011-01-01T21:37:00.000Z

As with a lot of my posts, time has passed by in a flash since I last updated this page. It's a wonderful thing to realise that after all I've been through, life can be so normal again.

I also realised that I haven't left this story with all the information. Quite a while back, on the 20th May 2010 I finally had my nipples tattooed to complete my reconstruction.

If you've followed my story you'll know how apprehensive I was about the nipple part of my reconstruction, but I was glad once I got them.

I had to wait a while for them to settle down before the tattoos were done. It was a fairly straight forward thing to do. I was lucky that one of the breast care nurses at my hospital, Marion Parfitt, trained to do tattoos, so I could go to St Albans as I had for all my other appointments.

I had to go and see her a few days before the actual procedure to discuss colours and to have a skin test to make sure that I wasn't going to have an allergic reaction to the ink. It was a little odd to try out different colours like paint against my skin, but worthwhile as I'm very pale skinned and some of the colors were way too dark or red.

We decided on a colour, these were then washed off and a small amount the size of a 5p coin was applied to my shoulder to be left for a few days to see if it was OK.

On the actual day of having the tattoos, I had to go an hour early so that a cream could be applied to the area to numb it a bit. Once I was ready, Marion drew on some areola shapes which we adjusted until I was happy with the size and shape. Then I just had to lie back as she did all the work.

It was different than having a normal tattoo. The needles only penetrate a few layers of skin, so it's nowhere near as painful, but I must say that it wasn't pain free!

It had to be applied to the whole areola area and the new nipple. Because of the fact that it's not so deep, its often necessary to have them redone in the future. She also only wanted to apply one colour at a time. If I wanted shading to create a more 3D effect I would have that done another time.

2 Days after tattoos

1 week after tattoos

2 months after tattoos

The pictures above show how the colour faded as time went on, however after 7 months they haven't really changed much more. I'm pleased that they cover the scars from the nipple surgery and very happy with the overall result.

the Moonwalk (possibly my longest blogpost ever, but please bear with it!)

2010-05-23T14:26:00.010+01:00

Well the day for the Moonwalk came around much quicker than I expected. They were very late in sending out the final packs to us, which meant that we only had a week or two to decide how to decorate our bras for the event.

If you're not familiar with the Playtex Moonwalk, it's an annual event that takes place in the centre of London and comprises of 15000 women (and a few men disguised as women), who walk a full 26.2 mile marathon starting at midnight. It's unique because you have to do it in your bra, regardless of your shape, size, age or gender. It is organised by the charity Walk the Walk and to date has raised over £55 million towards vital Breast cancer causes.

So our packs arrived, containing a cap (to keep the warmth in during the night and with reflective strips to help you be seen), a white T-shirt with a pink printed bra on it to wear during training and the all important bra to decorate, plus our walker numbers which were needed to gain access to Pink City on the night.

I was a bit put off by the fact that the hat was shocking pink (brought on by the reminder that my hair is naturally "strawberry blonde", read as ginger, and no matter what colour I dye it, it's inbred to STAY AWAY FROM PINK). I found out after that the pink hats denoted a full moon (that's the walk, not a quick bum flash, the world is not ready for the expanse of my backside, nor the snow blindness that it would cause!), there were white caps for those doing a half moon.

I chose to decorate my hat as well as my bra, if I was gonna have to wear pink, I may as well be noticed.

The bra part was a bit more challenging. The bra sent was supposedly my size, but as the event is sponsored by Playtex, it was a wonderbra. Because of the shape of my boobs with the implants, it was never going to fit right, so I opted for a sports bra instead. My cousin Samantha and I had kind of decided on using fabric pens when Jayne (her Mum, my Aunt) found some great flowery/half coconut hula inspired numbers in a fancy dress shop. We then decided to take these apart and add some extras to make them better.

A mad few days of shopping and stitching followed and we ended up with these. Flowery/coconut cups with flashing breast cancer ribbons in the centre of each boob and some lovely sequined straps which followed all the way around so that we sparkled from the back too.

Black bottoms were required to make the walkers look more uniform, although on the night there were all sorts to be found.

We had a last minute flash of inspiration and the pink leg warmers came about, to be worn as sleeves so that we could try and keep a bit more warmth in.

Looking back, that was the best last minute thought ever. It was bloody freezing and they were a great help.

We also had some pink glow in the dark necklaces and bracelets which we saved until dark to activate.

This was us at the train station on our way into London. The attractive bumbags are unfortunately a power walking essential. I never thought I'd buy one of those in my life through choice, let alone order a bright pink one!

We had about a 45 minute train journey to get there and met a lovely group of people who were also taking part. They were cheating though and had their bras on over their T-shirts, which is not really in the spirit of things. We were cold and brazen!

We raised a few stares until we reached Marble Arch, the closest tube station to the Hyde Park starting location where the Pink City was to be found.

Once we got there, we just blended in with everyone else. By that time all embarrassment had gone and the excitement was buzzing in the air.

It was pretty amazing to see that many people all together. The organisation must have been immense. There was a massive pink tent in the middle, which housed a giant stage, photo stalls, temporary tattoos, food and thousands of women. Outside there was a place to buy walk the walk wear, lots of portaloos and lots of lovely volunteers handing out plastic macs, space blankets and water.

There was lots of stuff going on on the stage, singing, sponsors, videos etc, but to be honest it was hard to hear or see as it was just so packed inside.

There were lots of outfits to be seen, but here are a few:

We were pretty amazed that even with such a massive number of people, we actually did set off at midnight. It was the start of a very long night!

In our training, the longest walk we did was the recommended 20 miles. This took us 5 and a half hours, which averages out at about 16.5 minutes per mile. On the night, the toughest part was the sheer volume of people. There's no way you can keep up that kind of pace when there are slower people in front of you. We thought we were doing pretty well, managing to overtake people as we went . It was a slap in the face when we realised that because they don't shut off any of the roads and we were in central London, that we would have to stop and wait for the pelican crossings to be able to move forward. Every time we built up pace, we had to stop and wait, which meant people building up all around us, then a fight to get going again.

There was also a nasty road traffic accident on the bridge by Big Ben which added to the hold up.

The miles rolled on with toilet breaks and water collection points along the way. It was tough at about the 10 mile point when all the half mooners veered off in a different direction that would take them to the finish earlier than the rest of us. We trundled on chatting intermittently and listening to some upbeat tunes to spur us on.

Now here comes the sad part . I'd been growing a blister from about mile 3 under my left foot on the arch bit. I'd cariied on regardless with the help of some nurofen, but at about mile 16 it started to really hurt. It took us 40 minutes to get to the 17 mile marker because of the pain.

I went to the wonderful ambulance people who were at the next toilet stop and asked them to take a look. They dressed it for me and I was asking whether they thought it'd be OK to carry on. They suggested I took some more painkillers and favoured the other foot more to make it easier. They said they'd seen some worse ones that were bleeding!

I hobbled on until the next water stop, somewhere between miles 17 and 18, six and a half hours since we'd set off. Then I had to make a choice, did I stop, or try and carry on another 9 miles? Well I'm ashamed to say that I had to stop. Every step I took felt like someone was tearing the arch from beneath my foot. I was devastated to realise that I wasn't going to make it to the finish, letting down myself and my sponsors. Despite having made it so far, there are no medals if you don't complete the event. I had to be realistic knowing that I had my 2 boys and my nephew to look after the next day.

Samantha asked if I minded if she carried on without me, which of course I didn't! I wanted one of us to get there! By this time Jayne and Alex had arrived at the finish line ready for our arrival, so we called them and Alex came to get me while Jayne started off to meet Samantha and walk with her for the last bit.

I don't have any photo's of me crossing the line as I didn't make it, but here's Samantha doing me very proud!

The final part of the story is that the next morning, after I'd been to the hospital to discuss and choose nipple tattoos for later that week (see the next blog post for details), Jayne took me to the minor injuries unit. They checked out my foot which was now very swollen as well as painful. They dressed it with a "second skin" to allow the skin beneath to heal as the blister had burst and bandaged my foot. I was given crutches and told to keep the weight off of it for a week.

The blister part is not too bad now, but my foot is still swollen as I haven't rested it as much as I should have.

Overall I'm still gutted that I didn't finish, but pleased that I tried.It was an amazing night. Unfortunately my ambition was to COMPLETE a marathon, so I guess I'm going to have to try again next year!

the Playtex MoonWalk london 2010

2010-04-26T13:33:00.001+01:00

This year I'm taking part for the first time in the MoonWalk. It's a full or half marathon and I'm doing the full one. (That's 26 and a bit miles.) It starts at midnight in Hyde Park, London on 15th May and there will be 15000 ladies (and a few men) all wearing their bras.

The charity walkthewalk raises money for Breast Cancer.

If you would like to sponsor me there's a link to the right of this post. Any amount would help the cause, even 50p would be fantastic and help me to reach my target.

I've never done a full marathon before, I did a half one a couple of years ago and managed to complete it in under 3 hours, but I'm going to be so much more exhausted this time. Training is well underway and over the bank holiday weekend I'll be doing the longest training walk of 20 miles in preparation. I sure hope my old bones are going to manage it!!

I missed Mums birthday :(

2010-04-25T13:22:00.000+01:00

Because I spent yesterday meeting mutants in London, I missed my Mums birthday. I didn't forget. It was on my mind all day, but I didn't get the chance to go and visit her grave and leave some flowers and a card.

She would have been 55 if she was still here. I still miss her, 16 years after she passed. It's weird how you can be upset by not being able to visit a stone, but I am nonetheless.

If you can hear me out there somewhere Mum, Happy belated Birthday. I love you x x x

Family History Forum 24/04/10

2010-04-25T13:00:00.001+01:00

Today was the first Family History Forum held in London by Breast Cancer Care. I found out about it by reading a post by lovely Caroline on BRCA Umbrella.

It was a pilot for gene carriers or those with a strong family of history of breast cancer. Finally it seems that it's been realised that there is a HUGE gap in the market for support for people like me!

If you've followed my journey from the start, you'll know that one of the reasons that I started this blog is because I couldn't find ANY info or support out there when I first got the news that I was BRCA2+. There were no photos, no support groups, no counselling, at least not in my experience. Since that time other BRCA+ ladies have created virtual support sites, but there has been no medical help that I've come across.

So at last there appears to be some professional interest. A day was planned, in London, to gather any interested mutants and to find out from the horses mouth what we actually would like to see happen in the future.

It was a great day. Firstly the sun was shining, even at the ridiculous time of 7.30am when I had to be at the train station. I had to catch 3 trains to get there, but some ladies came from much further away (Plymouth, Stoke, Birmingham and Scotland to name just a few!)

Secondly, I got to have a reunion with some of the lovely ladies that I'd already met when we took part in the Race for Life last year, a few other lovely ladies that I'd so far only known in cyberspace and some complete strangers (who were also lovely!)

I met up with Leigh-ann, Caroline, Rian and Karen at London Bridge and we were soon joined by Zara, who'd seen us wandering around looking very lost and tourist like. We found our way there and met up with Elaine, Liz, Jennifer and Charlotte. Everyone else was new to me (I think. My memory is truly dreadful).

I'm not really a group sort of person. Especially large groups and especially large groups of women. I find it very difficult to mix in that sort of environment. Whilst I'm very friendly toward people that I know, I find it hard to make new friends. Awkward doesn't even begin to cover it. I think I managed to hold my own though and keep that hidden. They made us play human bingo as an ice-breaker. That sort of thing takes me so far out of my comfort zone that I 've passed it and travelled a couple of miles down the road, but I did it and it was actually quite funny.

There was a talk plus Q&A from a genetic counsellor in the morning. It was quite interesting, but nothing that I didn't really already know. We were quite spoiled during the day with snacks and drinks at break times, plus a great lunch with lots of sandwiches and fruit.

In the afternoon we were split up onto break out groups. Those who had a strong family history, gene carriers and gene carriers who had already had breast cancer. I fell into the middle group, along with most of the ladies that I already knew.

There was lots of discussion in a group environment, with a genetic counsellor there. It was cool to have a medical professional on hand to talk to and ask questions. I didn't really have this kind of support from my own genetic counsellor, but I think that may have been because I was already so sure of my choices that I didn't appear to need it??? It really highlighted the fact that all around the country women are being treated differently, from GP's, to breast screening, to genetic counselling, to breast or plastic surgeons. There is no consistency and it very much appears that if you don't ask, then you don't get.

There is a lot of emotional support out there for sufferers of breast cancer, but bugger all for us mutants. I'm not saying it's the same for us, we're not physically sick, but it's pretty damned near emotionally with the choices that we have to make. Help is needed as much after a positive BRCA diagnosis as it is before. It was clear that even after having had risk reducing surgeries some women are still suffering with anxiety, are grieving for the loss of their body parts, or are still having some physical or emotional upset.

I hope that they listened. I hope what we said made a difference. BRCA carriers are not a massive group, supposedly 1 in every thousand, but if the UK population is estimated at around 62.5 million, than that means there are around 62500 of us. Quite a number of people who may need help, they're just not all aware of it yet.

I've been published!

2010-04-04T09:49:00.001+01:00

I think I'll be hiding out at home today. Fabulous magazine (the one that comes with the News of the World) has published an article aboout my journey so far.

It's not in my own words, but has been published so that it looks like my blog and they have taken most of their information from it.

Read the article here

The only reason I'll be hiding is because I hate even having my picture taken, let alone that the whole country will be able to see it (and my boobs), but it's been printed with a link for this blog, so hopefully anyone with any questions will stop by, read it all and maybe, just maybe it may help someone who's just starting out and is scared.

Guess I'll have to wait and see!

Welcome to the world

2010-04-02T11:00:00.002+01:00

This isn't a post that has anything to do with my BRCA2 life. Just to make a change from the mundane things and surgery stuff that usually make me update my page, this post is a lovely one.

It's to welcome my beautiful nephew Thomas to the world. He was born last Friday, 26th March and is totally scrumptious. I could just squeeze those cute litttle cheeks. Many congratulations to Mark annd Tash. I'm looking forward to watching him grow into another little cheeky monkey like Jakey. Love you guys x

I'm lucky enough to have 2 nephews and 2 nieces now. The best part is that you can have all the lovely cuddles, spoil them rotten, then give them back at the end of the day! All the fun bits without the total exhaustion from lack of sleep, this has to be my favourite way to encounter babies.

It's been heart warming to watch my boys with him, they're big enough to appreciate another little human now and it was so cute watching Zane staring at him in wonder of all his tiny little features while he held him.

My only problem now is keeping myself away so I don't drive them crazy :)

For Mum

2010-03-13T23:30:00.003Z

As mothers day approaches, it brings with it joy and sadness for me.

I have all encompassing love from my children, that makes me feel warm, happy and full, and I have sadness. A hole that cant be filled by any of the other women in my life, irrespective of my love for them. There can be many maternal figures, but there will never be another Mum.

I don't have many photo's of her to share, she didn't like to be photographed, which is a shame, she was beautiful. (She didn't used to wear make-up as harsh as this, but it's one of the few images that I have of her).

I found a memorial website earlier, when I was looking for a poem, called Much Loved which seemed like a nice way to remember her, other than just the cards, flowers and trinkets that we leave at her grave. For any of you out there that knew her, feel free to add your comments and memories there. I was only a part of her life and it fills me with sadness that I didn't get to know her as a friend because she was gone before I realised that she could be that too.

I was searching for something to help express my feelings, but I didn't find what I was looking for. She's been gone for nearly 16 years now and there's still nothing to replace her. I still feel so sad. Does time really heal? I think it just makes us forget, and I really don't want to forget. I don't want to visit my mother in law or my step mum on Mothers Day, I just want to remember my own Mum. I'm finding it harder as time passes, not easier.

So these are for you Mum, the flowers that you like best in the springtime. I remember picking them for you in the park back in the days that I didn't have any money of my own. I will put them on my table as my children have bought them for me.

We will smell them and look at their sunny cheerfullness and we will all remember you. I tell them of you even though you didn't get the chance to meet them. It's the most awful thing that you didn't get to meet all of your wonderful grandchildren, but you don't go unknown. You will never be forgotten. I love you still and I am not alone in that.

The Hunt

2010-03-08T22:25:00.000Z

Having spent a couple of weeks wearing my old bras I decided that they just wouldn't do any more. Whilst my breasts weren't particularly uncomfortable, the bits under my arms and going around to my back were starting to become very painful.

It's a funny thing, but that's where I have the most sensation, or rather lack of it. It kind of feels a bit like if your foot went to sleep, that heaviness just before you get pins and needles. Nothing nice there any more, but not numb, mostly not troubled, until that is I want to wear a bra, then it bloody hurts, especially by the end of the day. Funny when nothing much was done there, I guess that's what happens when you mess with nerve endings etc.

I decided that as I hadn't been formally "measured" for a bra since before my mastectomies, that it was about time I got it sorted.

Like a complete freak, I booked a fitting appointment for a Saturday morning. That in itself is not so bad, but what comes with that is my 2 children, both boys, 11 and 6 years old. They don't do shopping. They were under strict instructions to not even breathe too loudly so as not to make the experience any more traumatic than it needed to be.

The sales lady was actually really sweet. She measured me as a 38D, bigger in the cup and back than the 36D's I was wearing before. She didn't stare or ogle my boobs, she didn't question me about my operation, I think she was more horrified at my 2 boys sitting in the changing room offering their opinion as I tried on different items. As I've never been shy around them they think it's perfectly natural hahaha.

I explained that I obviously don't need underwires for support anymore, but that I wouldn't rule them out. I also didn't really want the sort of 2 sectioned cups with a line accross the middle as I thought this would make nipples sore if they rubbed. She went off to do her best and came back with a few for me to try.

Here's what we found:

1) Round breasts made of implants do not have the projection to fill a normal cup. They do not squish or adjust.

2) Slinky materials + round breasts + 2 sectioned cups = puckering

3) Slinky materials + reconstructed nipples = Would you like to hang your coat up here sir?

4) Non-wired bras in the UK are made for old ladies, they are not pretty.

5) Mastectomy bras assume that you want to wear a prosthesis and are therefore very high cut.

6) Smooth cups are more comfortable for reconstructed nipples

7) Reconstructed nipples require some form of padding or moulding in the cups to conceal them

Of all the things that she brought me to try, probably the 2 most comfy were Royce mastectomy bras, but they were still very high cut, which felt like it would rub near the armpits, and still had over shoulder boulder holder style straps which would not look nice under a vest top. They were also more expensive than any of the others.

Note to anyone out there: I am 37, not 87, I have fake boobs, I have nipples, I want pretty bras that conform to the above. I'm sure I'm not the only one, so if you're out there and you can do something about it, please do so, and let me know!

I got dressed and decided to peruse the lingerie department independently, whilst my children chased each other around the displays as if they were in a park (joy) and I tried to pretend that they were neither mine, nor on loan to me from someone else.

I found a few more things and went back to try them on, but was no more successful. I handed them all back to the new sales clerk, only to be asked whether I knew I was trying on mastectomy bras? Errrr, hello, I already had that conversation with your colleague and I know she told you!

So I went home happy that I'd discovered my new size, but disappointed that I hadn't found anything. I spent the rest of the afternoon searching online for something that may fit my growing criteria.

I ordered several bra's and also looked into nipple covers as I also still want to be able to wear nice backless clothes like I was before when a bra wasn't a necessity. I eventually settled on some skin coloured stick on ones which are not bad at all.

These were Petals lace covers in a pack of 10 pairs from Boobybits.com and were £7.49.

I've also ordered some silicone ones from ebay (by far the cheapest) which claim to be reuseable over and over again, I'll report on those when they arrive and I've tried them.

I was very disappointed when all my ordered bras arrived and none of them were perfect. They all just didn't fit right in the cups. There was either gaping, or just too much material in the nipple area (although when they come the silicone nip covers may resolve that issue).

Dejected and about to give up, I had one final brainwave. The bra's I'd been wearing before were perfect in every way except size. Perfect colour, shape, material, they were just too small and old. So I started looking to see it they still existed out there somewhere, I knew they were Triumph, but the labels had faded completely so I dodn't know the type. I was delighted to find that they did, so I ordered a couple.

They came, I tried them and............they're perfect! Oh I cant explain the joy of having a properly fitting comfortable bra. Such a small thing, but oh it feels sooooooooo great.

This is the one, its a Triumph Super Soft WP. I got mine from Debenhams as they had a deal on at the time, but the site with the best size and colour range was needundies.com and I'll be heading back there for a nude one.

Weird sensations

2010-03-08T21:03:00.003Z

My new nipples have spent the last few weeks settling down. It'll be 6 weeks this Thursday and they seem to be ok.

I was quite scared when I went back to have the stitches removed, but my fear was unfounded. With me it's always the thought of having something done that's worse and I get myself flustered unnecessarily, not that you'd know though because I keep it all to myself.

It took a little while due to the amount of stitches, but once they were done and I was all cleaned up again, I was sent away with a spare set of sponges and some micropore tape with the instruction to wear them for a further 2 weeks, removing them for only for bathing. I did do this for a week, but found it a nuisance as the sponges moved around a lot more with the tape than they did with the cling film stuff. I was also unable to wear some clothes as the friction of the sponge on some material made me cringe, I felt like I was sqeaking when I moved. Not attractive!

After 3 weeks of sponges I was a very naughty girl and stopped wearing them. I'd simply had enough, plus the "just popped out" look was a bit too much for me. I couldn't wait for them to start to flatten out a bit.

So now with no sponges, I had to revert to wearing a bra. It would've been simply indecent to leave the house without one. Smuggling peanuts would've been an understatement! I still had a couple of bra's that I'd had before all my surgeries which still fitted reasonably and they didn't seem to show through too badly.

There was something weird happening though. Having spent just over a year with not a lot of sensation in my reconstructed breasts, it now felt like someone was permanently touching me up. Seriously! It felt like my nipples were being rubbed all the time. The feeling of close fitting fabric was a very odd thing. It wasn't wholly unplesant, not painfull and thankfully not arousing, just new and strange.

Nipplelicious

2010-02-01T19:58:00.006Z

I have them! After all this time, 15 months after I lost them and 3 postponements later, I finally went ahead and got myself some new nipples made.

Last week on Thursday, 4 days ago now, I went back to St Albans hospital, this time to the out-patients department for Mr Thomson to make me a new pair.

It was a different approach this time as I was having local rather than general anaesthetic, so I didn't have to starve before the procedure, nor did I have to stay for ages afterwards as I hadn't been put out.

I was allotted a bed in the mixed out-patients ward and busied myself with reading. You're not allowed to have anyone waiting with you there, so Alex had to leave me at reception. It wasn't that bad though, I wasn't nervous at all this time around, just intrigued about how it would be done.

Mr Thomson came around to see me armed with a mirror and a black permanent marker. He drew some lines on me to establish my centre, then drew some large black spots where he thought my new nipples should go. I had to use the mirror to check and between us we moved them around until we were happy that they looked even.

I also asked him about my "dog ear" and the wrinkling on my right breast. The good news is that he's going to ask the plastics dept to have a look at me. The extra bit can be removed and there is a relatively new procedure where some of my own fat can be removed from elsewhere by liposuction and added to the areas where the implant is showing through to help pad it out. Ingenious!

When it was my time, I was wheeled along to theatre, much as I'd been previously, only this time we didn't hang around in the anaesthetic area, we went straight through to main theatre where I was introduced to all of the people who would be helping during my operation.

As I wasn't wearing anything other than the theatre gown and paper panties, once the gown came off I was covered with a blanket called a bair hugger. It was a funny kind of paper and plastic type thing with a vent in it, through which hot air is pumped. I was snug as a bug in a rug. Well at least from my lower chest downwards!

A window was created by taping green paper panels down the side of each breast, beneath them and above them and a rumples sheet of the same material was placed under my chin right across so that I couldn't actually see what was going on.

After about a half an hour of drawing and measuring, Mr Thomson was ready to proceed. I was given 3 or 4 injections in each breast to numb the area and was surprised at how sharp it still felt despite my having previously thought that I don't have a huge amount of feeling there anymore.

It was very surreal hearing him ask for each instrument and also that although I wasn't in pain, I was still aware of all the tugging, cutting and stitching as I could feel the pulling. It didn't really hurt, although a couple of areas were a bit sharp, so he gave me more injections and it was fine. If it wasn't for the pulling, I think I may have nodded off to sleep.

To the left is a diagram that shows how they take a flap of skin and fold it around to make the new nipple. They are made larger than the intended finished projection as apparently they flatten out a lot over the first couple of months.

He showed me each one after he had created it, but before the dressings were put on and to be perfectly honest I was shocked, in a good way at how realistic they looked. I know they wont stay like that, but the size and shape were just like my own were before. The dressings are a subject all of their own. I'm currently sporting blue sponges, probably an inch deep and 2 inches square. They are hilarious. They have holes in the middle to make little "windows" so that you can see inside, then are covered with a sort of sticky cling film. Inside the new nipples were covered by antibiotics, which weirdly is the sort that is used for eye infections as apparently this works best. I look like some sort of robot, or as my Dad said, Sponge Bob Square tits hahahahaha. They are not at all disguisable and I am very glad that I didn't go through with this part of the reconstruction in August as I would have been so embarrassed. At least layers of winter clothes cover them a little, whereas summer vests would have been humiliating. The other bonus is that I give off a vibe anyway that seems to make me quite unapproachable, so there aren't many people brave enough to come and ask what the hell I have beneath my shirt! The first few days were not really painful, but last night and this morning I had to take some Ibruprofen as I'm quite sore. I think some of the pain is also coming from my chest muscles as I'm having to hold my arms away from the dressings all the time, I'm so worried about knocking them! I have to go back on Friday to have the dressings changed, then another week later to have the stitches removed. My hope right now is just that they survive.

About time too.......

2010-01-27T19:24:00.002Z

At last the time has arrived for me to have my next small surgery. I'm going in for day surgery tomorrow and having a local anaesthetic this time, so none of the starvation before/sickness after etc, just some pain relief, a few cuts and stitches, padding then home. I think. If I'm honest, I'm not totally clear about how they make the area numb, I mean surely I cant have an injection in my boobs, wouldn't it burst the implant? Maybe its a cream or something? It's been so long since I've seen the surgeon, I'll just have to ask him before and hope its not too bad......eek! I'm also not sure about how they do it to me while I'm still awake. How do they shield my boobs from me so that i cant see? Or do I get to watch the whole thing in glorious technicolour? Neither of these things actually matter, I just want it done now. I want this part to be over so that I can truly move on. I received a call today from the gynaecology department at Watford hospital. They've finally accepted that I exist and have offered me a cancellation appointment on 12th February, so fingers crossed I can get the ball rolling there too. I've been missing in the BRCA community for a little while now, I've been busy redecorating and with general everyday life. Being a typical Aquarian, I go through weird phases of needing to be alone and I was finding it all a little overwhelming for a while, but have also realised that I miss the friendships that I'd made. Hopefully there's a middle ground that allows me to be there still. I hope that I haven't offended anyone with my silence, I just needed time out. Sometimes I have to just get back to basics and just exist, just live one day to the next and not think about anything else.

180 flip

2009-11-26T20:41:00.003Z

It's been a little while again since I've updated here. It's funny how the need to get my thoughts out is less as the process goes along and real life takes the wheel. Lots has gone on in the real world since last time. I've been sorting out schools with Reggie. He goes to secondary school next September, so we've been visiting schools and he's made his choices, plus taken the relevant tests to give him as many chances as possible of getting the one that he wants. I've also been able to see what it's like to experience this BRCA Journey from the other side. My Auntie has the same gene mutation and decided to follow the same path as me. She had the exact same surgery, same place, same surgeon (actually she had 2!), almost a year to the day that I had mine done. I found it far more scary on the outside looking in. To be the one at home waiting, calling the hospital every hour after the time that they said she'd be out to see if everything was OK. It was a horrible time. I know now what my poor husband felt like waiting for me to come out. Especially as I was in there for 9 hours! She didn't go down to surgery until late in the evening, even with 2 surgeons working on her, it was past 11pm before she was back on the ward and the Sister told me that she was OK. I barely breathed until then. I thought my heart was going to explode out of my chest when my mobile rang at 2.30am. I thought it was the hospital calling to say something was wrong! How amazing to find that it was actually her, sitting up in bed having a cup of tea and a biscuit, chatting to me like nothing had happened. I must say that she is truly remarkable (love you Jayney). It's been 4 weeks today since her operation and she's doing so amazingly well. Her range of movement is fantastic, far better than mine was at that stage. It's really quite surreal to see it all from the other side, to accompany her to the hospital for check ups, to see her scars and her bravery. Someone told me tonight that I'm incredible, well I think that any woman who faces this journey head on is pretty damn incredible, it's not just me! So since my last post, I've had a complete 180 degree flip on the decision that I made then about nipple reconstruction. So what changed my mind? Well actually it was the very thing that I was going to do. A BRCA friend of mine sent me a link from an American tattooist who does a lot of work on post mastectomy women. One lady in particular had decided to have tattoos instead of nipples, much as I'd decided to. She'd had a series of flowers done, building up to what eventually looked like she was wearing the cups of a bra (you can view them here). While I still think that they look OK, it made me realise in an instant that I don't want to look that way. I just want to look "normal" again, or at least as normal as is possible. Just like that, no questions. I just need to suck it up and get over my fear of this small part of the journey that will leave my breasts finished. I've made another appointment with my surgeon for 7th January and this time I intend to keep it.

Warning - this post has reconstruction photo's included

2009-10-06T14:29:00.018+01:00

I promised a photo post and here it is at last. Actually it's been quite fun putting it together as it shows my journey to date and I hadn't actually realised just how far I've come. I have left out the more gory shots so as not to freak anyone out.

It's been 11 months exactly since my original operation to remove my healthy breasts. Some days I'm glad I did it, some days I'm upset as I don't love the results, but overall I like them and they have a much smaller chance of killing me (2% as opposed to 85%).

I'm nearly at the end of my journey. I had my meeting with my bcn a few weeks ago and we had a big chat about nipples. She put my fears to rest about having the surgery.

There wouldn't be a huge protrusion problem as I could ask Mr Thomson to make them any size I like, being as he isn't trying to match one side against another like in a single sided mastectomy. There also wouldn't be an issue with dissolvable stitches being left behind to try and make their own way out of me at a later date as they only use regular stitches which would be removed after 2 weeks.

I spent the next 2 weeks happy and decided, I was going for it. I would have my new nipples put on and look finished at last.

Then doubt crept in again.

I've been round and round inside my head and have asked opinions of others trying to help me to make my decision. I posted a message to my facebook friends as I wanted a male perspective other than that of my husband as he's biased. I didn't ask this question as I want another partner. I love my husband dearly, but as a woman, I'm interested. I was also thinking crazy things like what if Alex isn't with me forever? What if something awful happens to him and I'm alone and deformed. Who'll want me then?

Only 3 men bothered to answer me, but do you know what? They helped me more than I could have imagined was possible. Their message was that any man worth his salt would love his partner regardless of any finishing touches or missing parts. Any that had an issue were not worth being with anyway.

Of course. Stupidly, I hadn't even thought of that. It was so obvious that I hadn't even seen it. Like a light being shone in front of me, I could see my way immediately. I don't want fake nipples. I like my smooth boobs. I like no underwear, I like strappy tops and backless tops and all the lovely things that I couldn't wear before. They are my prize, along with a hopefully longer life, they are the only other perk of what I've done to myself and I don't want to give that up because I need a bra to hold down my permanently erect nipples. I'm going to do what I want. I am going to have some pretty tattoo's added to my boobs. I've spoken to someone whos work I love and he's agreed to do it for me. I just have to choose a design. The hunt is on!

A bit late for fear to arrive

2009-09-11T21:06:00.005+01:00

I've scheduled a date for my hopefully last surgery, the icing on the cake so to speak. I've booked myself in on 22nd October for my nipple reconstruction. That's 6 weeks from today. This should be an easy thing to do. It doesn't require a general anaesthetic, I would simply go in, have it done, then go home. I'd have dressings for approx 4 weeks after, of which the first 2 lots would have to be changed at the hospital weekly. It would be by far the easiest and shortest of my surgeries and although there can be rejection, my surgeon has a 100% success so far. So why am I afraid? Where the bloody hell has fear sprung out from to grab me coldly round the ankles? I am petrified. In fact, I'm still undecided if I'm even going to go through with it. It's driving me crazy and making me panicky. I hate that feeling when you cant draw a deep breath, when a panic attack is lurking around the corner ready to tell you you cant breath and are going to pass out. I've only ever had it happen a couple of times, but it's hovering. There are a few things that are rolling around in my head, excuse me if they don't come out in the correct order, I just need them gone, committed to paper (or cyberspace) so that I might have a chance of sleeping tonight. The first is that I quite like my boobs without nipples. They're not beautiful, but they're not ugly either. I like that I can wear clothes without a bra and that there's nothing to poke through. With nipples, they'd always show. How far would they protrude if I had them? Not being natural they're not going to respond to heat and cold, I'd look pleased to see you all the time. What if I had them and they fell off? What if they remained but were wonky or not symmetrical? As they're only made by cutting the existing skin and stitching it in a particular way, what if they react like the parts of me which are rejecting stitches right now? What if my skin rejects the dressings again? Even though I have scars now, they are predominantly underneath and have faded quite well. They're nice and smooth now, what if they end up all deformed? So I could have nipples, or I could leave them bare. There's a third option which is feeling like the most promising to me. I'm going to ask at my appointment next week whether it would be safe to have proper tattoos done in place of nipples. Not areolas, but maybe hearts or flowers, or something like that. I don't know if it will be allowed as my skin is so thin across my boobs with not an awful lot of flesh over the implants. They are under my muscle though, so I'm hoping it would be ok. This option would allow for them not to look so unfinished, and also for me to avoid a surgery which is scaring the shit out of me, while letting me still wear the clothes that I've been able to wear since I had my op. (Other than avoiding cancer, wearing what I like is probably the only other upside to having implants). Originally when I spoke to Alex (my husband) about this, he said that he thought they'd look better with nipples and we agreed that I'd go ahead with it. He can see how much it's troubling me now though and has said that he's really not bothered either way. He doesn't find me any less sexually attractive now than he did before. Even though they don't feel the same to me, they're still a part of our relationship. If anything I'm the one who's more self conscious of how I look now. I certainly don't cover myself up, I never have and I never will, but I am conscious of the fact that the implants move when my muscles contract. Another one of those lovely pieces of information that no one tells you. It's not pretty. They look great standing still, but move sidewards when I lay down and don't look even slightly natural. As we have quite a physical relationship, they move around as I hold onto whatever, not in a bouncy way, they don't bounce at all, but in an ugly muscle way. like a body builders pecs. I certainly don't want them to be any uglier. So hopefully some pretty tattoos may be my answer. I'll find out next week. In the meantime, I've let it out now, so I can breathe. I have 6 weeks to make up my mind. (I did find a lovely tattooist who did a great piece down the length of my spine before my operation, if I'm allowed, I'm going to ask him, he works on his own in a shop with his wife around for company, so I'd feel very safe) I do have more recent photos, which I intend to publish here this time, so if you are a follower, be aware that future posts may well have some photos. I may even do a photo post that covers the whole reconstruction if I don't receive any objections.

Flashes & bits of string

2009-09-11T20:26:00.005+01:00

Having just checked my last post, it's been a month since I've found my way here. Stuff happens every day and I think to myself "that's important, must jot it down", then the moment passes and my sievelike brain loses it again and it's gone. Also just daily life, children etc has taken back some of the time that I had to myself. It's nice in a way. At the beginning all this BRCA stuff was so rampant in my mind I was posting every day. It feels good to be living instead of thinking, although it's always there in the background lurking. I healed reasonably from the horrors of last time. I did, however, revert back to the painkillers for the first 4 weeks.It's taken a long time though and is still not perfect. The right side and the port sites are great. The side that was upset is still not fully healed. That's one of the subjects in my title today. Bits of string! My skin had healed over nicely, but there have been 2 or 3 places that have stayed quite red/pink and have been a little sore. Over the last few weeks, some of my stitches have decided to work their way out of my skin. I find this quite distressing. It's something that I don't think I posted about first time around, but it happened then too. I don't know why it happens, but others have told me of the same, so I'm thinking it's reasonably common. Even more odd than random bits poking out of my skin is that there have been 3 different types of thread! Some black, some white and some plastic. I had a chat with the nurse today as a 1cm piece decided to come out, but was still attached to me. Sorry if this is gross, but she said she'd just pull it as far as possible and cut it. I've made an appointment to see her next week, but in the end got Alex to cut it for me because it was sore and I couldn't wait. This is one of those things that I wish I'd been informed was a possibility. It's a bit like childbirth when you're a surgery virgin. There's stuff that you're told about, anaesthetic etc, then stuff that's a little gross so no one tells you. Then when it happens to you, it's scary! I think I have a couple more bits that might come through, I just wish it would hurry up. The flashes part of my title refers to just that. I was asked by the Breast Care Nurses if I would be willing to go to the hospital and meet with a lady who is considering having my kind of surgery, to chat with her, answer any questions that I was comfortable with and possibly show her my reconstruction. I felt happy to do it. I wish I'd had the opportunity to have seen some 1st hand work from my surgeon before I went ahead, but it wasn't offered and I didn't think to ask. I went along on the day as arranged, feeling slightly nervous. I found myself scanning the waiting room and wondering which of the ladies I was going to show my breasts to. Not something I've ever considered before! The lady in question turned out to be slightly older than me. She wasn't BRCA positive, but had a strong family history. We had a chat for about an hour, then I flashed her! It was quite surreal to be sitting down with no top on having a conversation with two relative strangers (the nurse was still present), but not too unpleasant or uncomfortable. I let her feel how hard they are too. I don't know if meeting me will have any influence on her decision. She seemed to have already made up her mind. I hope she found it to be a positive experience. I'd happily go and do it again if it will help someone.

Double ouch!

2009-08-05T14:14:00.009+01:00

It's been 6 days since I went back in for my 2nd surgery to my boobs, just port removal and some nips and tucks. I had to make an unscheduled visit back to the hospital yesterday though. My skin has always been a bit weird with plasters. Not the kind you put on your kids for a cut or graze, but the sort they stick on you after blood tests. For some reason they itch like crazy and burn my skin off. I was surprised after my main operation that i had no reaction to any of the dressings. I'd told them that I reacted to certain plasters, they decided it was the elastoplast kind, and everything was fine. This time I have less extensive wounds, but still a fair amount. I have stitches inside and steristrips with a clear cling-film like cover over the top. One part, on my left side, had the clear plaster removed after the first day as the surgeon had also put a pressure bandage there and he asked me to take it off. Not a problem, except that after that, my skin decided that it didn't like the steristrips and formed blisters beneath each one. They were getting progressively painful and I was a little worried. So I called the BCN, this time it was Stephanie and she said to come in the following morning. She said the blisters often form when the dressings are too tight, but mine did appear to be a reaction. She burst the blisters (gross) and decided that the steristrips needed to come off. Unfortunately they took half my skin with them! She cleaned it all up and decided on a dressing with some tape to secure it, but I found later that day that even this was burning, so I now just have it open under a very loose shirt and cant put my arm down properly as its too painful. I'm going to keep an eye on it, I've taken pics so that I can see if it gets any worse. (I cant see it without a mirror or something as it's under my arm.) I'm not due back to see the surgeon til a week today. On the upside, I took hardly any pain meds yesterday and have so far had none today. I still feel like I'm off my face though, certainly not fully functioning. It's a bit hazy in my world so I'm just taking it easy today. I think I did a bit much the last couple of days. Thinking back to my original op, I couldn't move much after 6 days, this time I seem to be expecting miracles of myself which is not realistic. I'm feeling a bit sorry for my poor boobs, I've inflicted this upon myself striving to achieve a "perfect" result, maybe I should have left them how they were and not interfered. It has made me feel incredibly lucky though that the first op had no complications. The BCN asked if I'd had a breast uplift, she didn't realise that they were totally fake and she sees a lot of boobs lol.

Ouch!

2009-07-31T21:18:00.005+01:00

So another 6 weeks has passed since I last blogged. Time flies when you're having fun, living everyday life. I got my blood test results and I was anaemic so my doctor prescribed me some iron and also agreed to up my dose of thyroxine. Within a week I felt 100 times better so have been able to play with the kids and take them out and resume normal person duties. I even felt like doing housework and that's never on my list hehehe. I've also been back to see Candice, my breast care nurse. She removed another 20ml of saline from my implants as I was so happy with the squishiness before and still felt they were a bit too big for me. Things were looking good and shaping up. My date finally arrived for me to go back into hospital and have my ports removed and all the adjustments made to tidy up and perfect my foobs. I'd intended to put it all down before hand, but for the second time in a month BT decided to cut our phone line so we had no internet access. Very frustrating. So I went in. Same place as when I had my pbm, so a little surreal. They've changed things round there a bit in the last 9 months, this time I was to stay in the ward that I checked into, so I was given a bed straight away and able to place all of my own things before I went down to theatre. It was much nicer and made me feel more at home. I was on a shared ward this time, with 3 other ladies in my bay. There was one before me who was having a lumpectomy and node removal, then me, then another having port removal and corrections on one side. The other lady wasn't a breast case, I'm not sure what she was in for. I had to check in at 10.30 as previously, no food or drink after 7.30 am. This time I walked myself down to theatre at 3pm, it took 20 minutes to prep and anaesthetise me, then only an hour and a half to operate this time. I had both of my ports removed (the valves used to inflate my implants) plus some adjustments. There was extra skin on my left foob that looked different to the right, so this was tidied away. There were bulges at the end of each scar under my arms that were unsightly (to me) and visible through some clothes, these have been corrected. Finally my left implant was slightly out of place. It looked ok in a bra, but was noticeable without one. It looked especially ugly when I lay down. Without actually removing and replacing the implant my surgeon said that it was unlikely that he'd be able to correct that, however, he's had a go and from what I can see the results are good. I felt awful afterwards this time. I was still feeling nauseous at 10am this morning, thankfully I wasn't actually sick, as I hate it, but I felt like it each time that I moved or attempted to eat or drink anything. I was still able to go home though and was back home in my own bed before 11am. A long snooze uninterrupted by other peoples coughs, snores and yelps mad the world of difference. I am in a lot of pain, more than I thought I would be. The bruising feels quite severe and I'm not allowed to drive again for another 2 weeks, so the boys will be limited to local walkable journeys for a while. I'm going to stay dosed up on the painkillers for a few days and see how it goes. I have to go back 12th August to have all the dressings removed. I'm excited and hope that this time they'll look even better and will be more comfortable without the ports.

Tired of being tired

2009-06-20T22:50:00.003+01:00

I've been having a bit of a tough time this last couple of weeks. I've been feeling myself slipping down again and starting to be very emotional and tetchy. Along with these feelings comes almost constant exhaustion. I know this is not BRCA related, but I have been here a couple of times before and I'm starting to recognise the signs. About three and a half years ago was the first time I felt like it. I was working 4 days a week as I had for about a year, previous to that I worked 3 days. I was doing this and running my family as most mothers do without any problems. Alex is away often because of his darts career so I'm often alone with the kids at the weekend and at this time he'd had a bout of being away for a few weekends on the trot. I'd been feeling tired and emotional and not really able to explain it. It's hard to have something that people can't see as they don't tend to believe you. Being in your early thirties and physically exhausted is a bit weird. I carried on as normal, but was feeling worse daily. I reached the point of begging Alex not to go as I felt so unwell, but I guess he thought I was exaggerating as he went anyway. Sometime over that weekend I broke. I was trying to do everything that the kids needed, but even making a simple dinner was taking me hours as I couldn't concentrate on a single task. I still remember to this day the pasta bake which should have been ready in 40 minutes, but for some reason took 3 hours and was still wrong. I snapped, I was sobbing and totally unable to control myself. I'm sure my kids must have thought I was nuts. I called Alex, hysterical, it was only dinner, but felt like the end of the world. I felt like the whole world had collapsed around me. He sent his mum over to help me, but being the stubborn independent freak that I am, I rejected all forms of help offered and was probably incredibly rude, although I cant really remember the rest of that night much now, only that I was wrapping Reggie's presents and blowing up balloons at midnight ready for his birthday the next morning. I saw my GP and was told I was depressed. What? I had nothing to be depressed about, it didn't make sense. I went back again a few days later, she wrote me off work and told me to relax. I felt crap, my eyes were swollen, I was piling on weight even though I wasn't hardly eating anything. I went back a third time and saw a locum as my GP was away. She took one look at me and sent me to the hospital for blood tests, asking me to come back in a week for the results. Later that afternoon, I was called to go back and see her. The hospital had phoned and told her to get me back there immediately. I had a thyroid problem. The hormones secreted by your thyroid gland are called thyroxine (T4) and triiodothyronine (T3). Together, these hormones control the speed at which your body burns energy and how quickly reactions happen in your body. To test the levels of these hormones in your body, your doctor looks at the FT4 level and FT3 levels in your blood. FT refers to the amount of free thyroxine (FT4) or free triiodothyronine (FT3) hormones in your bloodstream. The usual range for FT4 is between 9.0 and 25pmol/L, for FT3 this is 3.5 to 7.8pmol/L. My FT4 was only 4. I had an underactive thryoid gland, or hypothyroidism that's why I was falling apart, I wasn't depressed at all! Apparently this is an hereditary condition too, something other than BRCA2 waiting to ping into effect whenever it feels like it. I've since discovered that both my maternal and paternal Grandmothers have it, I didn't stand much of a chance. It can also be brought on by stress, or from an auto immune disease. Because of this I have to take medication for life (thyroxine). It's not a hardship, 2 tiny tablets a day and i feel pretty much normal. I have to be checked every 6 months to make sure that the medication is replacing enough of the hormones to keep me going. There is an issue of how much thyroxine to take. Too little and I cant function, too much and even though I feel better, they say it's not good for you, so they try to keep you on the lowest levels that keep FT4 between 9 and 25. That's a big range! So every now and then, I start to feel bad again. It happens when I try to do what any normal person would find reasonable on a daily basis. Over the last six weeks or so I've been childminding my lovely nephew 3 days a week. I've really been enjoying having him and he's fitted in well to our family routine. I've also had a lot to do for the kids at the weekends, running around from one lesson to another, to tournaments, family parties etc. Well my body is screaming enough! I've had to tell my sister that I'm only going to be able to have him one day a week. I'm so disappointed and so furious with myself for being so fucking useless! I'm so tired, I'm asleep on the sofa by about 8pm every night. I know I have to take a step back, but I really resent it. I'm going to see the doctor next week and get my blood tested again, I'm so sick of having a small limited amount of energy to use for the day. Once it's gone, I can't do anything else. The exhaustion is so huge I can taste it, which is bizarre, but true. It makes me feel sick, like I'm going to fall down wherever I stand. I haven't had enough brainpower to think anymore about my boobs, just remembering daily things for the kids is taking it all up. I feel like I'm 96, not 36.

A little bit deflated

2009-06-09T21:36:00.005+01:00

I'm feeling a little bit deflated, but in a good way. I was back at the hospital last Friday to meet with my surgeon again to confirm arrangements for my next surgery to remove my ports, carry out minor alterations and add nipples. Since i last saw my BCN (breast care nurse), I've been thinking more about the size and feel of my boobs. We previously pencilled in my op for the end of June. Once this op takes place and my ports are removed then I'm stuck with what I have. I've been considering what she'd told me before and decided that I wanted a bit of saline removed. My thinking was that if I take a bit out and don't like it, then I still had time to put some back in, if I did nothing I might always be thinking "what if.......?". So I had some removed, 30ml each side to be precise. The result is quite amazing! While still being very very firm, my boobs do now have a bit of squish, without having given up much in the way of size. My kids say they're much more comfy to cuddle and I've found that sleeping is tons better. I can actually sleep fully on my stomach, something that I've missed so much. I'm also not so aware of them touching my arms, they're still there, but softer, nowhere near natural, but a lot closer than they were. So deflated, but good! It transpired during my appointment that my surgery has already been bumped from the 30th June date that we booked. My surgeon is then away for 2 weeks and there are cancer patients taking urgent places after that. We have rescheduled for end of July, they cant promise that it wont happen again, but said it shouldn't as I've already been moved once. I remembered to ask him how many surgeries like mine (purely preventative) that he carries out in a year. I was quite surprised to find it was only two or three. Since having met (virtually) so many other BRCA carriers, I haven't felt so odd, but this low number reminded me how few we are, and that of the few, even fewer are prepared to mutilate their healthy bodies in the way of preventative surgery. No wonder the hospital staff weren't sure how to monitor my sats etc. After I'd seen Mr Thomson and Candice had deflated me, we went through all the specific details regarding nipple reconstruction. She had explained before that I would need to wear dressings on them for a month and that I wouldn't be able to get them wet. I found out that these dressings would be square sponges, quite thick, with a hole in the middle on which topical antibiotics would be applied to keep out any infections. One of the reasons that I wanted my op earlier was in case we go away anywhere during the summer. If I have to wear dressings for a month it will restrict my activities with the children. I was also now worried about the dressings restricting my clothing choices. I cant bear to be hot and hate having much more than strappy vest tops on when it's really warm. Do I want big squares poking through all summer? The other thing to consider is size and shape. It was suggested that I draw on my breasts with a make up pencil to see exactly where I want them. I'd assumed the ends of the scars would be the ideal place as they come to a sight point and look about right, but Candice said that this may not be symmetrical, which I guess is makes sense. Will they look weird in different places? The 2nd option is to purchase some prosthetic ones and try sticking them on. I'm not sure how I feel about that. It kind of reminds me of my mum's prosthetic boob, which was really just like a chicken fillet! Since I came away I've been thinking that I may hold off on the nipples until later in the year, when I'll be more covered by winter clothes and less likely to be swimming. My mind keeps flipping between getting it all out of the way, vanity and practicality. I'm almost sure that I'm going to call them in the next couple of days and postpone, as long as I can still have the ports out and all the other alterations at the end of July. I may even yet have a little more saline removed, the difference really is remarkable, I'm thinking another 20ml out would feel a lot softer again. I'll let you know!

Nip Nip hooray!

2009-05-19T18:38:00.006+01:00

Since I last posted, I'm pleased to report no major events have occurred. Life has pretty much been passing me by in blur. In fact, that's not completely true, I now have a new niece named Sophie. She's very cute and was born on 14th May at some ungodly hour of the morning. Welcome to the world baby girl x (and well done Suzanne & James!) I've had a trip to the University College Hospital (Euston, London) for my annual ovarian scan. They're still normal thank goodness. I hate every time that envelope appears on my mat, afraid to open it in case it's bad news. Still, it wasn't, so life goes on..... Last Friday I had another visit to St Albans hospital to see Candice, my bcn. No inflations this time. It's been a month since I last had anything put in, but I wouldn't want them any bigger. She asked if I can sleep comfortably on my stomach now, which I sometimes can, but it can be painful. apparently it would be more comfortable and they'd be squishier if I had them deflated a little, but I don't want them to be smaller. I asked Alex what he thought, after all he's the one that feels them the most, did he prefer to lose a little size for a fraction more squish? Thankfully he feels the same as me, he prefers the look and size over the softness. We had a chat about the next step, I have an appointment scheduled for early June with Mr Thomson, my surgeon. I have to discuss with him any changes that I want made and I have until this time to decide if I do want a bit removed. I talked with Candice about the things I'd like touched up. There is a small fat/skin pocket under my left breast which needs tightening so that it matched with the other side. There are small fat pockets on the tail ends of my scars, kind of at the sides where my bra sits, these weren't here before and can be removed. My left implant also sits slightly further out than the right. I can move it over and it looks perfectly fine when I'm dressed, but I'd like it to be that way when I'm naked too. The one bonus of having implants and perky boobs is that I can now go bra-less. I want them to match full stop, I don't want to have to wear a bra all the time to look normal. She popped out to ask him and he thinks he should be able to revise that fairly easily too. All of these things can be done when I have my ports removed. At the same time I will get some new nipples! I asked to see some photo's of Mr Thomson's nipple reconstructions. Alex and I had a flick through a book showing photo's of all different looking boobs and nipples. Most were of ladies that had had reconstruction due to a mastectomy on one side. I didn't ask if he's done many surgeries like mine, purely for prevention, I will make a note to ask him when I see him. The one thing I did find out though was that he has a 100% success rate with nipples. None that he has made have dropped off yet, which can happen, yikes! There were big ones, small ones, dark ones, pink ones, brown ones......... basically bloody loads! I have decided that I will have the nipples made from the skin already on my breasts. This will leave a small scar as the skin is cut and gathered, kind of like a flower petal. the areolas will be tattooed a few months later. I could have had the areolas made from a skin graft so that they had a more textured appearance, but this would leave a quite considerable scar elsewhere on my body from the skin donation site. As my boobs are now a blank canvas, it's my choice entirely over size and colour as there's not an opposite side to match it to. I had quite protruding nipples before with quite large areolas, and they were very pink, not dark. I don't want anything too big this time, I'll discuss with Mr Thomson what will fit best and go from there. So we pencilled a date for my next surgery in the diary, 30th June is the day. My boobs will no longer be faceless. I may get bumped for a cancer patient, but I cant think that way, I just have to wait. It will be an overnight stay instead of a day surgery as they'll be doing a few things to me, but this time it will be at Watford Hospital, my local. Mr Thomson will do it there. How very handy!

Oh my goodness, the woman is a crazy stalker!

2009-04-15T10:13:00.003+01:00

Would you bloody believe it? Following on from my angry post about the disastrous non-meeting of last night with a very insensitive lady, she only phoned me, and being the donut that I am I answered the witheld call. She started with "I'm just calling to see if you're OK and to let you know that we shall be considering a different type of group to meet occasionally". Not so bad, but I had to say that although I'm a lot calmer this morning, I'm still very upset that she ruined what should have been a lovely evening. I told her that I cried because I was angry at the way she treated Alex and I, then she said "Knowing what you do now, will he be alright to wait in a pub next time?" What??????? Did nothing I've said sink in???? I kind of lost it then. After my ranting continued for a while I established the following.... Alex wasn't just excluded because he's male. No family member, friend or otherwise would have been allowed in. The group is strictly for BRCA carriers that are also a patient of The Marsden. (Another fact not highlighted when I asked about any support groups). If I'd attended with my sister (who has not yet been tested) she'd have been turned away too. Had I taken my son, he'd have been excluded. Well that only caused to anger me too. Basically, no males are welcome, even if they are carriers (disgusting). No family members are welcome (disgusting). No BRCA carriers outside of the Marsden are welcome. I told her that it wasn't really feasible that women would travel so far alone at night, Alex certainly didn't want me to. Apparently she even turned away one woman who was on her own, BRCA +, but not a patient. OH MY GOD HOW RUDE CAN YOU BE????? I told her that I'm nearly 2 years down the line from finding out that I'm BRCA2+. Imagine if you'd been that woman, if you'd only just found out and that someone had told you about the meeting? I'd have been crushed. She says that their group only follows demand and has established itself over 5 years, maybe they could set something up to suit people with needs like mine. HELLO???? My needs are exactly the same as any of the people there, only I would find it overwhelming to walk alone into a group of total strangers for the first time. Apparently that doesn't count in their demands. I suggested that she take a look at facebook and BRCA Umbrella and realise that there most definitely is a need that is not just mine. She then said that it would be better to establish our own group then. All I could bring myself to say to this woman was, "Well, I wish you luck in the future. Yours is clearly a group that I shall never be able to attend." Sad, but true. I think I'll start an informal coffee evening at mine every couple of months. It wont be medically sound, but it most definitely be welcoming to any sex shape colour or size person who would like to be there!

Unsupportive support group anyone?

2009-04-14T21:24:00.003+01:00

I've had an absolute disaster of an evening. I'd got myself all prepared to go to the BRCA support group at the Royal Marsden in Fulham with the intention of attending my first support group, and also meeting a couple of BRCA "sisters" that I've only ever been able to talk to online. The meeting was scheduled at the hospital between 6.30 and 8.30pm. Alex (my husband) and I set out nice and early so that we could grab a bite to eat in Kensington High Street before we went there. All was rosy, we had yummy Mexican food and turned up just before time. I could see Maria and her sister through the doorway, I was really excited. A lady came out to take our names. Then another lady came out and ruined my evening. She said that Alex wasn't welcome at the meeting. Apparently men aren't allowed and only once ever in their history has one dared to attend. Not everyone has partners, so it's inappropriate. OK, a big slap in the face, but I said politely not to worry, I would come on another occasion, I could understand the reasoning, we just had not been informed before. This didn't seem to stop her talking though. She had the cheek to tell Alex to go away and come and collect me afterwards! I told her that we had travelled from Watford, an hour away by train and that He has supported me in this entire journey. He would not be leaving unless I was with him. I thanked her again and prepared to leave. This woman has obviously never met a hormonal Aquarian before. In this state we are best left alone. However, she continued to talk, saying that we could then stay. I told her that in no way would I make anyone else there uncomfortable and I didn't want to cause a stir, everyone inside the room was obviously now aware that there was a problem, I just wanted to leave. She still carried on. Then I cried. GOD I HATE IT WHEN I DO THAT!!!!! I'm an angry crier, I grizzle when I'm frustrated and really want to smack someone. Why cant I be a shouter or something? I left the building, saying goodbye. She only bloody followed me! The woman must be insane. I made it clear that I was not crying upset tears, just angry tears as I now would not be able to meet Maria and Julie. She then had the cheek to suggest that we made our own group in the corner! I am on my most hormonal day, maybe this is rational to everyone else, but I was incensed, I couldn't even look at her. I didn't want to make someone else's first impression of me into a dirty little sub meeting in the corner. I actually had to say, please just leave me alone, you have ruined this experience for me now, I want to go home before she finally started to back off. Maybe she saw how far she'd pushed me, maybe Alex looked at her when I didn't, I don't know, but she left. I cant imagine how upset he must have been. He didn't say a word as he was more worried about me, but how dare she put him in that position? If husbands aren't welcome, they need to re-educate their staff and amend their letters to state that, to save causing the same embarrassment to anyone else. Sorry if this is a mad rant, but I was really looking forward to it and now I feel so sad it's untrue. RRRROOOOOOAAAAAARRRRRR!

An extra bit just for me!

2009-04-13T10:09:00.005+01:00

A week ago tomorrow, I went back to see Candice, my Breast Care Nurse (BCN). We weren't scheduled to meet again for another month, but I'd called and asked if she could squeeze me in. After my last inflation, I thought I was done. My boobs were rock hard and seemed massive. However....... I had a long chat with my hubby and my best friend about whether they thought my new boobs fit me, or were too big, or too small. I was feeling OK in a bra, but a little smaller than myself when undressed. I was quite surprised to hear that they both felt the same, but that neither would have said anything unless I'd directly asked. So, I went to have a little more put in. Another 50ml was added to each side. This time they really are full up. Any more and it would start to pull out the skin between my breasts and that would look gross! It's taken me a week to post about this. I don't know why, but I felt guilty about it. Like I already had a great result, why be pushy and ask for more. It's irrational, they're my boobs, why should I care what anybody else thinks? Who cares if I've had it done anyway? But, that's how I feel, guilty, a bit shameful. Weird! Aside from the guilt, they look great. They are whoppers, but they're my whoppers and I shall wear them with pride. (I shall post new pics on BRCA Umbrella and my facebook page soon) We had a chat about nipples etc. Realistically, the ports should come out and nipples should be added around July time. She said they could try and schedule something around the start of the school summer holidays for me. It's only a day surgery, I wont need to stay in thank goodness, but will have to go back for the first couple of weeks to have the dressings changed, then will do them myself for another 2 weeks after that. The areolas will not be tattooed on for 3 months after, so around October. Being as I started this process with my operation on 6th November 2008, it looks as though the whole procedure will take a year from start to finish. I couldn't have imagined that time frame at the beginning, but now it seems OK. Five months have passed already and I feel good!

I'm fully inflated

2009-03-17T09:26:00.003Z

3 days ago, on Friday, I went for my 4th inflations. Although they put in 100ml each side last time, I'd still softened up enough to need more. It's funny because they tell you that the end size is up to you, the size of the implant is really what decides it. If they're not filled enough you can see creases in the bag, which look like ripples on the skin as there isn't enough breast tissue left to cover it. So while I though they were big enough last time, they've been given another big boost! On my first fills the BCN added different amounts each side, 60ml on the left and 80ml on the right. She explained this as the way they fill them isn't just exact on each side, but judged by eye to give the best result. She thought that I was bigger on one side by the other. She also said that the imbalance can come from the fact that the implant is beneath the pectoral muscle, so the side with the dominant arm (in my case I carry everything on the left as I leave my right hand free to do stuff with) can be bigger. Anyway, after this first odd amount, the next two fills had the same added each side. It wasn't really noticeable to me before, but after last months' fill, since I'm now able to wear normal underwired bras, I could see the difference, that where she had added more to the right, I was bigger. So this time I asked her to balance them up. 80ml was added to my left and 60 to my right. Somebody asked me before how much was in my implants in total, which I hadn't thought to ask, but was now intrigued. For anyone just picking this up, the implants that I have are not changed over after inflation, but will stay in place. They were already there when I woke from my mastectomy. They have a pre-filled portion made of silicone, then the rest is inflated with saline. Candice didn't know how much silicone was in there, but will find out for me. She said that there's already 50ml of saline in them to start. this means that without the silicone portion, I have 340ml in each side. I will find out about the silicone though, so that I have a final figure. Each time that I've had an inflation, there has been no pain, only a scratch when the needle goes in, then that's it. My boobs are usually a little tight for a couple of days, but then OK. this time was different! There was still no pain on filling them, in fact all day was OK, but the night time, when I lay down, was agony! I woke up 3 times in the night in so much pain that I could hardly move to get up and get some painkillers. I guess it's because they're so full up now, but bloody hell it hurt. They were bearable during the days, but Fri/Sat/Sun nights were all agony. Last night was OK though, so I'm adjusting already. Another funny thing happened on Friday. After I'd had my inflations, I went out to lunch with my Auntie. After paying a visit to the bathroom, I was walking back to our table and arrived chuckling away to myself. I'd had to pass through a gap to get back, but had bounced off of the wall as I'd misjudged the distance! I am usually clumsy, but this was because when I woke up that day, my boobs were one size, then once they'd been pumped up, my brain hadn't registered the difference. Hilarious, I just bounced off and burst out laughing, people must've thought I was crazy. (Well I am a little, just don't tell anyone else). So apparently I'm done now. Pumped up to the max. I have to go back to Candice in two months time for any final adjustments, taking a few bra's so that she can check me over properly and get the best results. After this, I have to wait another month (until June) to see Mr Thomson again. this will be when we arrange to remove my ports and make me some nipples. I'm just going to have ones that are done from the tissue already there, raised a little, then tattooed rather than any skin grafts. I've got used to smooth boobs, I don't want some permanently sticking out monstrosities, like I'm freezing cold waiting to hang up my coat! I've asked to have the sides of my boobs adjusted a little too. Because of how far the scars go round, there's an area of skin each side that sticks out a little much and spoils the shape. He'll do all of these things at the same time. I'm really excited now. I'm starting to love my new boobs rather than just accepting that they're there. I'm very much looking forward to the finished article. they are not perfect, but they are very good, they are what I had hoped they would be, which is enough for me. I'm happy :) (I will post new photo's on BRCA Umbrella "Reconstruction" page, plus on my 2nd facebook page under the name Lisa Caroline)

Confused

2009-03-05T13:34:00.003Z

Over the last few weeks I've been trying to get a referral to see a local gynaecologist to sort out having my ovaries removed. I've spoken to my Carole, my genetic counsellor and she agreed after some discussion to send a letter to a consultant at Watford hospital. It took 3 weeks or so for her to write to him, and has been a another few weeks since and I've not heard anything from Watford with regard to an appointment. Yesterday Carole phoned to say that she also sent a copy of the letter to UCLH to put on file. That's where I'm currently having ovarian screening and CA125 tests. They have been in touch with her and said that they are concerned about removing my ovaries so young (I'm 36) and wouldn't like to see it happen until I'm in my 40's. I know there are risks of having them removed, but aren't there risks if I leave them there too? So now I'm confused. She wants me to discuss it further with someone (this was the whole point of me wanting an initial appointment) but Watford haven't yet replied. As it happens, UCLH have sent me an appointment for their clinic and my annual ultrasound on 20th April, so I have agreed to wait and discuss it with them. I really don't know what to do though. On the one hand there is cancer plus I have awful periods, both of which would be eradicated, then on the other, there's early menopause, HRT, osteoporosis. How do you choose? I was pretty much decided on going forward and having it done straight away, now they're messing with my head. I don't find it as easy as deciding what to do with my breasts, that wasn't even a question for me. Now I don't know what to do. Carole says that there's proof that BRCA2 people having their ovaries out too early don't fare so well later on, does that mean that even if I do all this radical stuff to myself that I'm gonna pop my clogs early anyway? I've never been able to focus on the future long term. Because I lost my mum so early, I figure that if I make it to her age (39) that's great, anything else is a bonus. As I edge closer to that age it kind of freaks me out. when I was younger, I knew that she died way too early, but she was a grown up, my mum, so way ahead of me. Now I'm nearly there, I know that you don't really feel any older than 18 no matter how old you look on the outside, you just get a bit wiser. I know that she must have been petrified going through what she did, 5 years of treatment, surgery, treatment, recovery etc before she died. How must that feel to know that you're leaving your children behind and you cant do anything about it? I can't comprehend it. She also did most of that without my brother and sister being aware of just how sick she was. That was one amazing woman! Well I'm ranting now. Confusion stirs so much up inside me. Yesterday I was a bit down, but today I actually feel quite bright and very positive. I've been back on my pilates machine, I was surprised that it didn't hurt at all. I've been on my running machine (walking only, I cant run!) and I feel better for having kicked myself up the ass and for getting moving. The sunshine definitely helps.

It's been a while

2009-03-04T19:12:00.004Z

It's been a while since I've updated. In general life is plodding along without any drama or major happenings. Last week I had to go back to the Royal Marsden as it's been a year since my initial visit with the genetics team there. I didn't have that much to tell them, only about my breast surgery and that I'm looking at having an oophorectomy asap. There was no further news that I was able to give regarding the rest of my family, because no-one else has had a test yet. I do feel kind of obliged to get the rest of the family in for testing. I don't know why. I can't make a decision for them, but I do find it incredibly frustrating that we can do something to affect the future of this stupid gene mutation and they're not all fighting to help. I know that some are scared, some flatly refuse, some cant be bothered and some just plain haven't got around to it. Aaaaarrrrggggghhhhh! I do have some contact numbers from my Nan, so I'm going to try my best to get my Cousin to at least agree to be screened, even if she wont be tested. I know this is the route my Sister has chosen for now. My appointment didn't bring up anything much new, but it gave me the opportunity to ask if they have anything in the way of a support group, as my local genetics department don't. I had to hang around to see a different lady, but it proved worth it. I met with Liz Bancroft who arranges all that sort of thing and found that they do have a support group that meets 4 times a year. The next is in April and I plan to attend. Apparently there's usually about 10 people turn up and there is a genetic counsellor present. Has to be worth a go, plus I can introduce them all to BRCA Umbrella. She also put me forward for a couple more studies. For now all that was involved was taking blood and urine samples (yes, having to pee in an incredibly small tube just for fun!) and to my amusement, provide toenail clippings! As I'd just pampered myself and done a pedicure, I have to post them my toenails the next time I cut them. Hilarious and/or vomit inducing. I'm so glad that I'm not a postman. Yeuchhhh! The other good thing is that they have added me to the list as a contact so that if ladies are thinking about having a similar surgery to mine and they have any questions they can call me or eventually meet me to pick my brains (those that are left after 2 children). I was most excited about this as I wasn't offered this option myself and I think it would have helped. Liz had said that they try not to bother anybody more than 3 or 4 times a year with this, but I'm not worried, I think its worth the time. I was, however, very surprised when she called me a couple of days later to say that there was already someone who would like to talk to me. She's passed on my numbers, but said that sometimes it takes a while for the person to get their courage up enough to call. sometimes they don't call at all. I've not heard anything more yet, but really hope that I do.

Blimey! They're as big as they were before!

2009-02-14T18:02:00.004Z

I forgot to put something in my post yesterday. In all the excitement of the fact that they will adjust the bits of my boobs that I'm not happy with, I forgot one of the other main things that made me really happy! I was told at my appointment yesterday that I should be able to wear underwired bras again now if I choose to. This was great news for me. I've always been one to have my boobs out there on show, therefore most of my clothes are cut lower than your average sports bra, let alone sexy support vest. I've been really struggling with having to wear the same few tops over and over, which come up high enough to cover my scaffolding. It was a revelation! I didn't think about it last night as my boobs were burning from the inflations. (It's funny how they hurt later on, but not at the time.) It's just a kind of burning feeling, from the extreme fullness. I slept OK with them though, even on my front for a short while. When this morning came, after I'd made batches of gingerbread valentines hearts for Zane, I suddenly remembered and dashed off to my special bra drawer to try my luck. I was pretty amazed when the first 2 that I tried, my most staple undergarments pre-op actually fit. I hadn't thought that I would be able to wear them again. My new boobs don't look the kind of shape underneath that would be agreeable to a "c" shaped wire, but guess what? They actually are. The other thing is that although they are a different shape now, plus a lot more solid, my old bra's fit perfectly! That makes me a 36D again! No wonder I was feeling like Jordan yesterday, from nothing to a D cup in 3 fills is pretty spectacular. So today I actually wore one and do you know what? It's a darned sight more comfortable than a sports bra! I celebrated the day by wearing one of my lowest cut tops and feeling proud. (Alex is thinking wahey! It's valentines day and I got massive boobs as my pressie, lol) The other good news that I'd forgotten by the time I did my blog entry (my memory really is rubbish) was that I was told I'm allowed to have a go on my pilates machine again. Apparently I should be past any danger of tearing myself open, so from Monday, I'm on a mission. Slowly but steadily to get my fat backside up and moving.

Delicious gingerbread valentines cookies!

2009-02-14T11:00:00.002Z

My Zane had me up at 9am today making gingerbread biscuits for the family. Yummy! They ate loads before i had the chance to decorate them all!

BRCA Umbrella

2009-02-13T20:25:00.004Z

There is a new social network site that is growing by the day. BRCA umbrella.

It was created by Leigh-Ann Jones for people with the BRCA genes (those that cause breast and ovarian cancers) their friends, or those interested in thier genetic family history. It's a lovely friendly place where you can find someone to listen, compare stories with and meet new friends from all over the world. Stop by, have a peek and join us

Pumped up and ready to go!

2009-02-13T19:24:00.003Z

Today I finally got to have my third inflations! I was petrified last night as it started snowing again around tea time and when I went out a 7.30 to Reggie's parents evening, there was already a dusting on the ground. When we came out again at about 8.15, there was already a few cm of snow. I was dreading it carrying on all night, meaning that I wouldn't be able to get to the hospital again like last Friday. The weather fairies must have been listening to me though, because it started raining at about 10pm and washed all the dreaded snow away. Even though I've had two inflations now, I was still feeling really anxious. I don't know why. I know it doesn't hurt. I know the bcn's are lovely. Odd, but the nerves were there, rumbling away in my stomach. Whether that turned to nervous exhaustion I have no idea, but I was out like a light when I went to bed and slept like a log. We got there early and were called on time, no hanging about today, lovely. The usual procedure followed, strip to the waist, say if I had any concerns, say whether my boobs had softened up since last time. They were in fact very soft. Candice decided that she would be able to put more than 50ml in each side. She was aiming for 100ml each side! I was glad that I'd worn the next size up bra that had quite a gathering of space ready to accommodate extra boobs. Strange how each nurse has their own methods, but I didn't have to lay down this time, just sit upright while she found the ports. This was quite funny as I could actually see them grow before my eyes (even though I couldn't feel anything, not even when she put the needle in). Once we were done I asked how they know when to stop inflating. Is it when I think they're big enough? Is it when they think they're big enough? How many more inflations did she think I'd need? The answer was a bit of both, but basically that once I'm happy with the size, they may inflate a tiny bit more to allow the skin to stretch, then take a little saline out which gives a slight drop to the breasts and looks a bit more natural. Because my scars are T shaped, apparently these shaped boobs don't always need a drop, so we'll see. Candice thought that I might need 2 more appointments for inflating or "tweaking" to get it just right until I'm happy. I asked about a small "pouch" of extra skin that I have on the left breast, but not the right. Because of the way I was stitched up there's extra skin there that doesn't seem to belong. It's not so noticeable when I'm standing up, but when I lay down it looks ugly. Apparently they will adjust that for me too, and anything else that I'm not happy with. How cool is that? Like a made to order pair of boobs. That could have cost me a few grand in several years time when I decided that my saggy old boobs needed a lift. I've got mine for nothing and they're worry free! They do feel like rocks again today though. the inflating part doesn't hurt, but having a couple of big bazookas sticking straight out in front is uncomfortable and rather sore. I keep banging into things because I haven't judged the distance properly (mt brain isn't as quick to catch on, even though my eyes saw my breast grow!). I'd just got used to being able to sleep on my stomach again, now I'll be back on my sides for a while. I'm going swimming with all the family on Sunday, that should be an experience, my very own floats. I'll let you know!

Bloody snow!!!!!

2009-02-05T17:03:00.008Z

All has been good for a little while now, I've been enjoying the snow this week with my family. School was closed on Monday and Tuesday, so we walked to my sister's house to build my nephew his very first snowman. It was so cute watching his little face as he chuckled at my monsters throwing snowballs at us. It was only a little snowman, but he's only a little sausage himself. We all had a fabulous time and lots of lovely hot chocolate afterwards. I loved the snow. Today though, I fell out of love with it. It took me an hour and 40 minutes to get the kids to school and get back home, only a 4 mile round trip! It was ridiculous, I can walk that journey in an hour. (but not with 2 cold wet children and a heap of bags) A bad start was made worse by the fact that driving for that long left me with a lot of pain from beneath my boobs where the scars are. Enough to make me cry, it hasn't been this painful since the start. I don't know what hurts exactly, there's nothing to see, but the pain is sharp and uncomfortable. I was also looking forward to having my third inflations tomorrow, only to have the snow scupper my chances of that too. The breast care nurse called to say that as they were hit with more snow overnight, the staff were not getting in so everything has been delayed. My appointment has been put back to Friday 13th February (wwwooooohhhhh, spoooooky!!!). Good job I'm not superstitious!

Realising my limitations

2009-01-21T12:53:00.003Z

I've not had much to update at the moment as everything seems to be going quite well. I've been sleeping better and feel pretty good most of the time. I'm as happy as I can be with my new boobs while they're still under construction and they don't feel as alien as they did before. My issue is knowing when to stop. I'm so used to being able to do exactly what I want, when I want to, that I'm really struggling with holding myself back, so I do too much and hurt myself. I was pretty strong before my op, lifting a sleeping 5 year old who weighs just over 3 stone will do that over time, my muscles grew as my son Zane did, so it's so ridiculously hard and frustrating to not be able to do normal stuff! I'm no giant, but at 5ft 7 in flats and a good 5ft 10 in heels, I've always been the one in the supermarket who gets asked to pass things down for people. they look at me so strangely now when they ask and I cant reach up too far, like you lazy cow! I struggle to close the boot of my car, to open doors and still to carry things. Zane was really sick and I had to collect him from school last week and I couldn't carry him to the car, I had to ask for help and I hate asking! I'm impatient. I'm aware that I can carry a handbag now, I couldn't hold anything a month or so ago, but I cant hold a door open for anyone, not even for my children, unless I do it with my butt (which incidentally is large enough to open anything, but doesn't always leave room for others to pass by!). When is it going to get better? I asked at my last appointment if I could use my pilates machine and was told to wait another few weeks. If I'm honest with myself, I know it would probably hurt, but I'm sick of being restricted. I suppose one thing to be truly grateful for is that I don't have a job. I've been a stay at home mum for 20 months now thanks to Alex, and I'm very fortunate. I'm thinking now that maybe I should get off my ass and go swimming, the horror of a swimsuit should stop me gaining any more weight. In fact I should be able to wear my speedo one now without my boobs resting on my belly, no more nipples poking out at the bottom of my ribs, I've got built in floats. I'm going to try it on later just for the laugh, I could be like Pamela Anderson, only double the width and not blonde. It's my birthday tomorrow, I'll be the grand old age of 36. It does feel really weird to be nearly as old as my mum was when she died (39). The closer i get, the stranger it feels. I saw her from a childs viewpoint, so she seemed so grown up, but being nearly the same age myself, in fact older than she was when she was first diagnosed with breast cancer (34), totally freaks me out! How she dealt with a young family and held it together so well that my younger siblings had no clue how sick she really was is a mystery to me. That woman had such courage and strength. I hope I've inherited some of those traits from her too. Even though I've had the op and my chances are much lower now of developing breast cancer, I still feel grateful for each year that I'm alive. If I'm still here at 40 I'm gonna have one hell of a party for me and for her combined!

My crazy family

2009-01-13T12:09:00.002Z

This was me, my hubby & kids, my brother & his gf, my sister, nephew, cousin and auntie on a freezing cold sunday at Virginia Water. I couldn't feel my toes for 3 hours!

Zane at Virginia Water

2009-01-13T11:54:00.001Z

Reggie at Virginia Water

2009-01-13T11:52:00.001Z

Controversial? I wish I'd had their choice

2009-01-10T22:27:00.006Z

It has been all over the newspapers that the first baby has been born in Britain who was screened as an embryo to ensure that it didn't have the BRCA1 or 2 gene. I've added a couple of links in case you are not aware of it, but it seems to be causing great controversy. Daily Mail - http://www.dailymail.co.uk/health/article-1110244/Britains-cancer-free-designer-baby-born-screened-deadly-gene.html Guardian - http://www.guardian.co.uk/society/2009/jan/09/breast-cancer-gene-girl I kind of touched on this subject the other day as I didn't get to find out that I have the BRCA2 gene mutation until last year. I'm blessed with having two boys and I wouldn't swap them for anything in the world, they are my very reason for living, but had I been given the choice to have had my embryo's screened for this curse, I certainly would have snapped it up in a heartbeat. I can cut as many parts of me out as is physically possible, but I cant protect them, I have to live knowing that I've put them and their future families at a greater risk. You cant really say to your children that they wouldn't be here if you'd have known. I truly believe that things happen for a reason. Having them changed my life and changed me as a person, but had I known that I was passing on BRCA2, I wouldn't have had a baby. Easy to say in hindsight, but that's my heart talking. I think it's hugely significant for other BRCA1 & 2 carriers to know that they don't have to have the choice of children wiped out, but that there is another way to do it and give your children a healthier chance in life, not a 50/50 roulette. I think it's fantastic and wish them all the luck in the world.

A little bit bigger!

2009-01-09T22:05:00.004Z

Today was the day for my second inflations. For anyone just picking this up, I had a bilateral prophylactic mastectomy 10 weeks ago from yesterday and although I had immediate reconstruction in the form of implants, they have to be inflated slowly to allow the skin and muscles on top of them to stretch. I wasn't scared this time as I know now that it doesn't hurt putting in the extra saline, so I went along calm and relaxed ready for it to happen. I saw a different BCN today, it doesn't matter to me, they've all been lovely and I think that they do a fantastic job. The lady that I saw today, Marion, is the same one that will do my nipple tattoos later down the road. I assumed the filling up pose, topless, half sitting up on a bed and she filled the syringe ready to go. This time I was having 50ml each side as they are happy with the balance now. First came the small prick of the needle, but that was all I felt, then before my eyes my right boob grew! Then she tried the other side. A small prick, then another, then another. I think she tried 5 times to stick it into the tiny port beneath my skin, but it wasn't happening! Marion went off to get Mr Thomson, my surgeon, as he was around today, to see if he could find out what was going on with an ultrasound machine. apparently sometimes the ports can become twisted beneath your skin. I think I started to panic a little, Alex was pacing around trying to make me smile, but I was thinking that there was no way I was going to leave that building with one boob bigger than the other! I know I've handled it all really well, but that might just have pushed me over. I'm happy as long as they look OK to me. Mr Thomson came in, did the ultrasound, then declared nothing wrong. She told him to find it himself then, which was kind of funny! Much to his delight, it went in straight away and his face gave her a look identical to that which passes between my 5 and 10 year old sons on a daily basis, it said "Ha, see! I can do it better than you!" it was hilarious. So I left with distinctly bigger boobs (they cant be noobs or non boobs anymore as they're just too big!) and an appointment to return on Friday 6th Feb for another go. I think that once more might be my lot. They're already too big for my hands and although I cant compare them to my old ones as the shape is completely different, I think the size once dressed is similar now. I cant try my old bra's on to check as I'm still too swollen at the sides and because they're all under wired they wont fit on my new shape. I don't know if that will change, but because my new ones point out instead of down, I don't need a bra anyway, only to hold them in place. I'll have to wait and see what the future brings. I will take new photo's, but rather than do them immediately, I'm going to give them a day or two to settle. Watch this space......

Sympathetic or Scared?

2009-01-08T12:23:00.003Z

Over the last couple of days I've been back up the school to collect my boys each day and have found a strange occurrence. Quite a few people who would ordinarily talk to me in the same way as anyone else have approached me with a certain look on their faces. Slightly squinted eyes, furrowed brow, I guess the way you'd look when you see something and wince like it would hurt. I find this quite amusing! I'm probably being rather mean as I know the look that they are trying to convey is actually concern for my well being and I want to shout out loud "SERIOUSLY, I'M OK!" It's lead me to a bit of confusion. Are they overreacting? Is it me that's a bit loopy and reacting to my surgery like it's no big deal? I honestly do feel that way, I have no regrets in the action I've taken at all. I feel well and I'm happy. I've read other blogs and seen people that are struggling with a huge internal argument over whether to be tested, then what action to take and I can only come to the conclusion that because I'd settled it in my mind many years ago that the path I've taken was the one for me, even before I was certain of my BRCA2, then that's why I'm so calm about it now. I know I've called this blog "My Choice" but it wasn't really a choice, more a winding path that I couldn't see the end of that finally became clear when the fog moved away and allowed me to walk forward. This leads me to think that forewarned is definitely forearmed. My cousin who's Mum also carries the gene mutation turns 18 later this year. We've talked about whether or not she wants to know before she's old enough to act on the information and that's solely her decision, but I know that if it was me, I'd rather know sooner as it allows time to process your actions rather than trying to ride a huge roller coaster of emotion when you finally find out and try to process and deal with it at the same time. I'm not sure if that makes sense to anyone else, but that's what's been rattling around in my head, so I thought I'd free it.

I cant get no sleep

2009-01-06T16:06:00.005Z

Insomnia. It's not good. I go to bed late every night, always have done, but at the moment I go to sleep for 2 hours, then I'm wide awake again! It sucks! I don't know why, it's just happening and it feels like a cycle that I cant break. It's been nearly a week now and I feel so tired. Luckily Alex has taken the boys to school for me the last couple of days and left me in bed, but then I don't wake up until 11ish and so the cycle carries on. My Nan thinks its because I'm not taking any painkillers anymore, that now I've stopped everything, even the paracetamol, my body is adjusting again, hence the sleepless nights. all I can say is I hope it doesn't go on for much longer or I'll be wasted. This Friday I'll be going back to see the Breast Care Nurse (BCN) for my second inflation. This time I'm actually looking forward to it as I know it doesn't hurt, plus I'll be a bit bigger again after! I cant wait to have a proper size chest back again. I know I said before that I was favouring the smaller bust, but now I've got a bit, I'm greedy for more. I just want to fill my clothes out like I used to, I'm not looking to compete with Jordan or anything! I'll post some new photo's to my facebook page afterwards. So I'm 2 months on, taking no pain relief at all and feeling pretty good in general. I still cant push or pull things, but I can lift stuff again and do practically everything else. I've even managed to sleep (when I reach sleep) on my stomach for a while each night. That's a luxury that I never thought would be possible ever again. Granted I was propped up with a few pillows so that my noobs weren't squashed against the mattress, but the feeling was good. Except from when I was pregnant with my boys, I've always slept on my stomach, I'm just a little afraid of pushing the implants round under my armpits. I'll check with the BCN if it's OK or not. I've been walking more since my last post, it feels good to be out again in the fresh air. It's been freezing though, so we were all wrapped up warm. I'm going to ask the BCN if it's OK to do pilates again too. I have a fabulous machine that I've not touched for nearly 3 months now and I want to get back on it, my posture is suffering for being slumped around too often and my muscles are feeling lazy. I cant have great boobs but a flabby tummy for the summer!

A very Merry Christmas and a Happy New Year

2008-12-30T19:54:00.002Z

So Christmas has passed, peacefully (well as peaceful as can be with 2 boys) and healthily. That makes me feel fantastic, I couldn't have asked for more. If I think back to 6 or 7 weeks ago, I couldn't imagine standing up, let alone going out, shopping, buying and wrapping gifts and being able to socialise with my friends and family. I am sooooooo lucky. I'm here, I've reduced my breast cancer risk to practically nothing, I'm healthy, healing well and feeling great. My scars are getting better daily, I'm pain free most of the time. The only discomfort is either stretching feelings where the scars are or occasional pain (which is more like pressure) where the implants are, but on the whole not too bad at all. Bloody marvellous if compared to how it felt after surgery! Christmas was lovely. In my house we were all surprised and chuffed to bits with the things that we each received. We had a wonderful day at my Dad's pub with lots of family around. delicious dinner, big fat trifle and far too many chocolates! Boxing day was at my step-brothers house, another chunk of the family, yet more nibbles and chocolates! I think I've been thoroughly spoiled. I hardly raised a finger to do anything, each time I did I got told to sit down. It was great yesterday to go for a big long walk around the lake at Aldenham to take in lots of fresh air and kick my body back to real life. I've gained about a stone since I came out of hospital, which is probably half a stone on my normal weight, due to eating too much and sitting around the place too often. It's about time that I took myself in hand and sorted it out. My brother and sister and their partners are coming to us tomorrow for New Years Eve, my boys are having a sleepover with their Nan. I'm making a big chilli with nachos, sour cream and home made salsa and guacamole, I cant wait. Lovely company, tasty food and lots of drinks I'm sure, it should be nice, plus a ton cheaper than last year! I guess the only thing left to say for now is see you next year!

Clearing out and moving on

2008-12-17T21:15:00.005Z

It's been a few days, nearly a week since I last posted anything here, I guess because nothing major has happened and I didn't want to bore anyone to death with my mundane life. Then I remembered that I'm doing this for me as much as anyone else, so that I can look back myself and realise how far I've moved forward (or not). Things that may not be important to everyone else may be landmarks for me. Along with the rest of the world, we're getting ready for Christmas. It is crazy for only a few days gathering with my very large and disjointed family, but I love it. For me, getting ready means clearing everything out and making space for new things, as well as wrapping gifts. Over the last few days, Alex and I have been working hard in our "top room", which for the last year has supposedly been a playroom for the kids, but they've never got as far as half way up the second flight of stairs as it's just a junk room for us adults really. So we've been cleaning out. Toys, books, video's (does anybody watch them any more?), random stuff that I think has been breeding and mostly, CLOTHES. I've had to admit to myself that I have way too many clothes for one person. I honestly think that I could wear something different every day for at least a couple of months without having to wear anything twice. It's obscene to be frank. So I've been ruthless. Anything that I'm too fat for (lots unfortunately), anything slightly old looking, too short, too baggy, it's all having to go. I've filled at least 4 large sacks full for the charity shop so far and I'm nowhere near finished yet. I'm not just rambling, all the clearing out involved sorting through the drawers of drawers. The underwear had to go too. I discarded thongs completely (for the simple reason that my backside is so wide right now that I may as well stick a triangle of material to my crotch because you'd never see the string), so fat pants are in (well, shorts at least). And then.......the bra's. Honestly, I must have had around 30 or more anyway, so some had to go, but what to do with the rest? How do I choose? What size will I be? What shape will they be? Will I still want padded push up beauties to put my "noobs" on display? When will it ever be comfortable to consider an underwired bra? It was strange. I don't have any answers right now, so I picked out all my favourites and filled a new drawer just for bra's. I think that I may even tie a ribbon across the front ready for a formal opening next year. Having been inflated to my second size since the op, all I know is that they're still not big enough for me. As I've not had my ovaries removed yet, I'm still susceptible to pre-menstrual bloating (which has nothing to do with the doubled calorie intake the week before I'm due, of course). Right now, I look like I'm 6 months pregnant. To be honest, it's probably not an unusual thing, it's just that now I can see my tummy poking out, it's used to be hidden under my boobs, so even though it was there, I couldn't see it! Ignorance is bliss! Tomorrow I'll carry on with the sorting. It feels quite cleansing. I'm hoping for a better night tonight. I have managed to sleep properly on my side for short periods, which is great, but for the last few nights I haven't slept well at all in any position. The last couple of days have been quite painful for my noobs, they feel like rocks sometimes. I am still taking painkillers fairly regularly, but only paracetamol and ibuprofen. I've lengthened the time between them though and haven't had any tramadol for well over a week now, so even though I don't always feel like it, things are still getting better every day.

Back on the road

2008-12-11T12:16:00.004Z

I got my little car back yesterday, it's been undergoing maintenance (a new clutch) while I've been recovering, an ideal time because I wasn't allowed to drive it anyway. It's quite scary how much of your independence you give up when you have to rely on others to take you places all the time. I know I could go on buses, but I've been petrified that someone will bump hard into me, especially if I was alone. So I've been limited to the few local shops for entertainment value, but only for window shopping as I cant carry much still. When I went to the hospital Tuesday, I asked when I'd be able to drive again and was told that it's up to me, whenever I feel able to move my arms enough. Now I'm strapped into my new super bra, I've not been in much pain at all, so I thought I'd brave it and take to the road for a jaunt to see if I could handle it. I set off for my Nans house, but I didn't call first to let her know, I thought I'd start out and see if I made it that far or not. It's only about a 15 to 20 minute drive when there's traffic, but I took Zane with me and we went the scenic route to spot the houses with the most Christmas decorations. It was OK. Not great, just OK. I was aware of everything pulling and that wasn't too bad, it's just that now my new boobs are under my chest muscles, they move each time the muscle moves, which just happens to be all the bloody time! You also don't realise just how much you take each movement of your body for granted until it's restricted, never aware how many muscles it takes to perform the smallest action. The most uncomfortable was when I did a 3 point turn to back track on an extra extravagant display. As it turns out, that wasn't such a good idea, the looking over my shoulder and moving the steering wheel was a bit tough. Not painful, just hard work. So for now, little trips will be my limit, small distances, but practice, until I feel like I'm the one in charge again. So having my car back is great. I'd just like to say a great big thank you to whichever little bastards decided to slash 2 of my tyres during the night. Yep, one of the neighbours called early this morning to say that I had 2 flats. Alex went out and took one of them to pump it and found that they'd been slashed with a knife. Thanks. Thanks for making him have to go and get them replaced. Thanks for the fact that he feels like crap at the moment and didn't need to go out. Thanks for the additional cost right before Christmas. Marvelous, just what I wanted! I didn't have a very good night pain wise. It was recommended that I sleep in my super bra if possible, the BCN (Breast Care Nurse) said it would be best to wear it as long as I could stand it. Well, I tried it and it was agony. Odd how something that can make me feel so comfortable during the day caused me so much pain when I was laying down trying to sleep. It got to about 3am before I gave it up as a bad thing and took it off. So today I'm functioning on about 4 hours sleep and looking after my poorly boys as they're both still off school sick. I hope they'll both be better for Christmas. Al's gone to work even though he's full of cold as well, I think he's getting stir crazy! Hopefully after lunch we can cosy up on the sofa and have a snooze. That's my plan anyway and I'm sticking to it!

Get the foot pump out

2008-12-09T16:26:00.004Z

The day has arrived for my first inflation to take place. I barely slept last night, one, because I was very scared of this day arriving and two, because everyone in the house except for me is sick, so there was coughing all night long and I cant rest when the kids are sick. The kids are off school as they're both so poorly, so I didn't have to get up so early and dawdled my way along until it was time to go. We had to drop them at my In laws house as I didn't want to take them to the hospital and risk infecting anyone who's immune system might be a bit low. I had to be there for 12.00 lunch time to meet with Candice, one of the breast care nurses. At 1.30 I was at last told that I'd be the next in line. Not good as I'd taken some painkillers ready for them to kick in when I needed them and I was now past that time. Then you couldn't guess what happened? The bloody fire alarm went off and everyone had to evacuate the building. How's my luck? When we eventually went back inside, I had to wait for another 20 minutes before we were called in to the treatment room. I was visibly anxious by this time, to the point that Candice said that we could put it off for another day, but I asked her to examine me anyway and see what she thought. she's the one that does this all day every day, I haven't a clue apart from the horror stories that I've read, all which mention pain on inflation and extreme discomfort and tearing feelings afterwards. Candice thought that I'd be fine to go ahead today and showed me again all of the paraphernalia that I mentioned previously. I assumed the laying down position on the paper covered couch and prepared myself for torture. She felt beneath my skin for the "ports" left there before, then one side at a time injected saline solution via an enormous syringe. Other than the initial pin prick, I can honestly say that I didn't feel a thing. It didn't hurt, nor was it uncomfortable. Once I sat up it was a little bit tighter, but nothing serious. I had 80ml put in the left side and 60ml in the right. the difference was because apparently the right side was looking bigger as I'm right handed and the muscle in bigger that side. I don't care how they do it, as long as I don't look wonky in the end. I was also given a support vest to wear. I've avoided a bra so far as once we'd found some that fitted me better, I found that they all rubbed where the ports are under my implants and it was quite painful. The sexy vest is probable bigger than a bra all over, but is something along the lines of "Bridget Jones knickers" only in a bra. Not glamorous, but surprisingly comfortable and I'm up for anything that's going to give me a better overall shape. So the outcome? Well I guess It looks like I've got some boobs now, around a 36B according to my husband. I guess he's held more boobs than me in his time! I feel quite upholstered and strapped in, but not in any more pain than before. Once I'm out of this vest later, I shall take some new photo's and post them to my facebook page (see previous blog entries for the link details if you want to access the photo's). Now I have to wait until 9th January for my next inflation. Once a month is the "norm" apparently, so for Christmas and the new year, I'll have to settle for a B.

4 Weeks on

2008-12-04T13:10:00.005Z

Today is 4 weeks since I went in for my operation. It's odd because on one hand it feels as if it was a year ago already and on the other it could've been yesterday. I have taken a few new photos as I think things look as if they're improving every day. You can judge for yourselves whether you agree or not. I managed to sleep on my side for a bit last night. Only last week that was impossible and I couldn't imagine ever being able to do it again, so there is a big shiny star of hope glimmering in the future. I mustn't get complacent though as I keep thinking that I'm able to do far more than I actually can and then pay for it with pain later. It didn't hurt holding baby Jake though, which was great as I missed his squishy cuddles more than any. (Sorry to my own boys, but he has that baby smell still. Your cuddles and kisses are the most important to me.) The Bio-Oil seems to be a success. I feel moisturised and not itchy. It hasn't stopped the tightness on the scars, but i guess its early days and my skin is still trying to repair itself after being sliced open. I still have more bruises coming out, I have some at the top of my ribs now, where the drains were. Finally the ones on my hands have gone though, I was getting fed up with people looking at me like I was a drug addict when I was out and they saw my bruised hands (They looked like I'd been searching for a vein! It wasn't me, just a mean anaesthetist!). I have a poorly son at home today. Reg was ill yesterday feeling sick, now it's Zane's turn, so I'm off to snuggle on the sofa and watch films and snooze with him. I wonder if there's a whole night's sleep in the future too?

2 in a bed

2008-12-03T11:36:00.005Z

Last night was the first night that Alex came to our bed to sleep with me since my operation. Now I'm not hurting so much and have healed fairly well, he was less worried that he might knock me or do me any damage without knowing it. It wasn't a great success! I wasn't hurt at all, but after sleeping alone for nearly a month, it was strange hearing him breathing (and snoring) beside me. I started the night without the ton of pillows that have propped me up and kept my arms in a position that didn't feel like my breasts were going to rip open. It seemed OK, I was quite comfy and settled down for a snooze. After 2 hours of tossing and turning (of my head and legs as I still cant sleep on my sides or front as before), I gave in and got up for some painkillers and pillows. I don't know which of them worked, but I nodded off and was OK til morning. It was nice having him back beside me, but i guess it's going to take a little while to get used to again. I'm feeling pretty sore at the moment. Not the implants for a change, but the scars. I suppose it's where I'm healing, but the scars feel very tight and quite sore underneath. My skin is very dry and feels like it needs moisturising, but I'm afraid to put anything on it as everything I've tried so far has brought me out in a rash which then makes me itchy as well as sore! I think I'm going to call the breast care nurses today and see if they can recommend anything. It's making me a bit scared for my inflation's next week. If I already feel like I'm going to tear open, it can only be worse if my skin is going to have to stretch even more. I'm not looking forward to it at all! I still haven't got my Christmas tree sorted. It's up and in the right place, but I need Alex to get all of the lights and decorations out of the top room for me, so I'm waiting and hoping it'll be tonight. Yesterday Amanda and I did the tree's at the pub while Dad and Chris are away. They look quite pretty, but made me want all mine done even more! How sad, I've got Christmas tree envy! Tonight we're looking after Jake for a couple of hours. I'm really looking forward to that because he's so scrumptious that I could just eat him. His smile lights everything up and always cheers me up. Look at those cheeks. Mwahhh, I love him soooo much!

A great way to shop for Christmas

2008-12-01T11:16:00.005Z

The last few days have been a mass of Christmas shopping. Friday I was out with Alex and we did all almost all of our shopping for everyone. Saturday and Sunday I was with Jaynie and we did all hers. I say "we" in a very wide use of the term. I was present and great at picking stuff out, but unable to carry anything at all. It was hilarious, everywhere we went I was getting looked at like I was the laziest bitch in the world, walking beside my family holding the smallest handbag in the world, while they were laden with about 20 shopping bags each. I recommend having your boobs done just before Christmas, what a way to shop! You get to do all the fun part and none of the carrying! Not too much has been happening other than that. I've just been home, healing slowly and getting better every day. My range of movement is increasing daily and the implants are actually feeling softer to the touch. (As soft as rocks can be, anyway) The great news is that i can actually have some real hugs now. It doesn't hurt at all to touch me, in fact my boobs are quite numb in places. I got to squish baby Jake and hug Zane and Reg, which was wonderful. I also had great news as two ladies that i know were both having breast lumps investigated. I've been waiting and holding my breath, praying even though I don't really believe in all that, just hoping that all would be well. As it turns out, they're both OK. Phewwwwwww, large exhale. It's very scary and just reminds me that I've done the right thing cos I'll never have to worry about all that again. Tonight I'm hoping to put up my Christmas decorations. It's my favourite time of year. I love putting all the stuff on the tree and just being able to watch the lights twinkling away in the evening when its dark. I love to see the kids faces when they wake up and it's all done. I just love it. I'm getting very excited for Christmas and I cant wait for it to arrive! Bring on the sad Cd's with carols and cheesy songs. I'll have to play them indoors as I cant drive yet. All I need now is a bottle of Baileys and some wrapping paper, then I'm ready.

On my own

2008-11-26T09:52:00.004Z

Today is the first day that I've been by myself since the op nearly 3 weeks ago. the kids are at school, Al's gone to work and I'm just here, on my own, by myself, at last! I usually spend a fair bit of time by myself and hadn't realised how much I've missed it. I have time to breathe, time to relax and time to get used to myself as I am now. I've found myself looking at my scars a lot since they unwrapped me yesterday. I don't find them sad or scary, just different and new. I'm still a bit scared to clean them up too much as I feel like I may burst open at the seams. I desperately long for a soak in the bath. I've always been a reading in the bath for hours kind of person and have had serious withdrawals from only being able to bathe from the waist down, getting help to wash my back. I suppose it will still be a while until I can do that again. Small pleasures, that's what I miss the most, more than my old boobs. I miss cuddles, the wrap your arms around someone and squeeze them tight kind of hugs that let you breathe in someones smell and feel their heartbeat. Anyone that comes near me kind of bends from the waist to give me a kiss, not touching me anywhere but my cheeks. I know they're all afraid of hurting me and probably would, but god I miss that. So for now I'm going to chill out. Nice aromatherapy oils in the burner. A half bath, at least I can dunk my back in with no plasters anywhere. I've got a couple of films on sky+ that are waiting for me, lovely spag bol leftovers for lunch and I'm going to veg out. I need to get out walking soon otherwise my belly will protrude more than my noobs (that's non boobs to me and Alex).

And the dressings are off!

2008-11-25T20:14:00.005Z

Today was my follow up visit to the hospital, my third since my operation 19 days ago. Despite having tried to kick some of the painkillers, I had to start taking them all again as once they all wear off it's still quite painful, so I'm continuing in numbed bliss and feeling pretty good about it. I went back to the hospital at lunchtime a little fearful as the dressings that they put on last time looked a bit messy and I was dreading them being removed in case it opened up my wounds, I still hadn't seen myself with no dressings at all and could only imagine the state of what lurked beneath. I was surprised to say the least when Mr Thomson ripped off all the plasters without batting an eyelid, then snipped off the stitches and plastic tubes that were holding my "ports" in place. I didn't feel a thing and had expected the ports to stay as they were, this was great news as they were causing a fair bit of discomfort and pulling. After the nurse came to clean me up a little, I braved a peek in the mirror before she could put anything else back on me. I've been itching to see the worst that I can possibly look, the reality shocked me, in a good way! All I have is a curved line where the bottom of my breasts would have been, plus one going up to where my nipples would have been. the lines are very neat and it looks like the scarring will not be too bad. I was amazed at how well I've healed in such a short time. Apparently I have to be careful of the "t junction" where the stitched lines meet, but it looks far from horrifying. I shall take some new photo's and post them as mentioned before for those that want to see. I spoke to Mr Thomson about the fact that I'm very numb beneath my armpits, he says it may even stay this way permanently, so I've a lifetime of very careful shaving ahead and will have to be double sure on the deodorant front in case I cant feel it! I also told him how it feels like a steel plate inside my chest. This is something that I have to get used to as well, he said I should expect to feel like that (as if I'd been run over) and it will improve with time, I'm still doubtful. I don't have to see him again for another six months providing all goes well. the Breast Care Nurses will take care of me from now on. My experience of them so far has been great. I've met two or three of the ladies and they've all been lovely. They will take care of my "inflations", which are to begin another two weeks from now on 9th December. I asked to see how they do an inflation, so as not to whip myself up into a frenzy of paranoia before my first appointment. They showed me a small bag of saline, which looked like the bags that you see attached to all the drips in hospital programs. This had a butterfly on the end, which is a thicker than normal needle with a butterfly shaped end to stop it going in too far and to push the saline in. They will put the needle through my skin into the ports (which will be still there under my skin, but not visible thank goodness) and fill me up from there. I don't know how much goes in, it depends on your skin and how much the doctor thinks you can handle. Right now I'm thinking the least amount possible as I've not got a lot of skin left to stretch too far! I should get inflated every couple of weeks or so, this may give me a chance of a little cleavage for Christmas and New Year if I'm lucky enough to be going anywhere. I also went to school to pick up my boys today. I've been very afraid of other people bumping into me in case it hurt, but I kept behind Alex, who makes an excellent shield, and all was good. It was nice to start getting back to normal even if I cant pick them up by myself. I nearly forgot to mention my pedicure! It was fabulous and I have been converted. I sat in a massaging chair drinking coffee and having my feet pampered like never before. I now have feet that feel as soft as a baby's with lovely shiny red nail varnish on my toes. Sorry if that's too much information, but it was soooooo good. A very big thank you to Al for treating me.

It's pouring outside, but I feel sunny!

2008-11-23T14:50:00.004Z

Today is a good day. I woke up really late, 10am, when I'm usually up at 6.30 to 7.00 because of Zane, my youngest boy. How lazy is that? Not such a big thing, but it meant that I wasn't woken by pain. The last painkillers I'd taken were at 4am and I'd slept right through. I've taken that as a good sign and am cutting out some of the tablets today to see how it goes. I have a lot more movement in my arms now too. I still cant lift anything heavier than the kettle, but it's way better than before and makes me feel good. I am very stubborn and fiercely independent, so it's great to be able to something for myself. I've told Alex that he can go back to work or darts practice on Monday. As long as he takes me to my hospital appointments and takes the kids to and from school, I feel perfectly capable of looking after myself now. I think I heard him breathe a big sigh of relief, if I'm bored at home I hate to think how he feels being stuck here too. Tomorrow I'm going for a pedicure! I've never had one in my life, but since I had to remove all my jewellery and nail polish for the operation, I've not been able to reach my feet properly to redo my toes and they look sooooo ugly! Alex said he'd treat me and I cant wait to be pampered. I've been very surprised by the number of people that want to read about my journey and send big thanks to you all. If I can reach even one person and help them see that it's not so bad, then I've done what I set out to do.

The Photo's are on

2008-11-20T16:37:00.004Z

I've spent this afternoon uploading and sifting through photo's to put on my facebook page. Hopefully the ones I've chosen wont scare the life out of anybody. Personally I don't think they look too bad, although they're far from pretty. I can see potential anyway. Once my "inflation's" are complete after a few months, I will have new nipples created from existing skin and they will be tattooed to imitate real boobs. Watch this space! I'm feeling really frustrated at the moment. I'm getting really bored being at home and not able to do hardly anything. I did make tea last night, which wasn't hard as was only a stir fry, but I hate that I cant even lift the kettle if it's half full, or get my own coat off the rack. I even had to buy a tiny bag yesterday as I couldn't carry my usual one, I'm limited to lip balm, my phone and purse, plus medication, that's all i can hold. The doctor wants me to try and wean myself off of the medication if possible this week, but it really is far too painful. Lots more bruising is coming out that wasn't there after my operation. I tried to lay on my side earlier and that was ridiculous. It's either flat on my back, or sitting upright. It feels as if the implants are a giant steel plate which stretches from beneath each armpit right across my chest, I cant squeeze my arms together, it feels like it would crack. Any arm movement, or even a cough or sneeze contracts my chest muscles and moves the implants around. They feel like bricks. Even though I'm still feeling very positive, I'm definitely thinking will they ever feel comfortable, let alone normal? They feel enormous. I'm going to ask the surgeon to show me exactly where they are and how big, because they feel like they don't fit. Maybe that's how they are to start with? I don't have any comparisons.

18th November 2008

2008-11-18T16:45:00.004Z

After my medication was adjusted last Friday, I finally reached a combination that has left me relatively pain free since Saturday afternoon. As I said to a friend yesterday, I still feel as though I'm smuggling a couple of aliens in my chest, but they just feel odd and very uncomfortable as opposed to painful. I even had a moment when I was laying in bed last night when I was so comfy I almost forgot I'd had anything done. Alex has been on a mission trying to get me some sports bra's, I need some that open at the back as opposed to pull on, but have no idea what cup size I am now, probably only an A cup max. I don't think they make much for a wide back and no boobs, so sent him in search of a 36B with fingers crossed. The poor soul came back with 4 different bra's, all of which claimed on the packaging to be the size I'd asked for. Two of them had been replaced in their packets with boned bra's, immediately no good, one was a 38C, and one the right size. When I tried them on however, the 38C was the most comfortable as under my breasts there are 2 small ports from where I'll be "inflated" later. I went back to see Mr Thomson in the clinic today. He had the best news of all, my lab reports on all the removed tissue are cancer free!!!!! There was a small lump, which was benign, but now it's all gone. I definitely made the right choice. I've kicked it's arse before it's got me!!! He removed the last of my dressings and said all looks good. I have to go back next Tuesday to have my stitches removed. We had a laugh as they produced some "softies" for me to put in my bra to pad it out a little. They were enormous when the nurse got them out of the bag, bigger than my own had been! After removing a load of stuffing, we tried them and they feel OK, but I think they look a little lumpy. I'm not really bothered about looking flat chested, quite proud actually, it's just that there's too much bra hanging around without them, I'm gonna keep looking as I might find something better, but for now what I have feels more comfortable than with nothing on. Each day brings more movement in my arms. I still cant put them straight above my head, but i can at least hold a cup and cut my food properly, I actually managed some jeans today instead of trackie bottoms. For those of you that know me well, today was the first day of make-up and a hairstyle, so I must be feeling a little better, even if it was only a ponytail cos I cant straighten more than the fringe! I shall keep posting any news or thoughts and feelings as I go, so keep your eyes open for updates x

Home at last

2008-11-18T15:41:00.014Z

For the last week I've been recovering at home. I'd just like to say that my husband is an angel, and for that matter, my children are too. They have all been fantastic, especially seeing as I'm not allowed to do anything, and for the first few days couldn't even if I'd wanted to. Alex has done everything. He's been at home with me 24/7 other than to take the kids to school. He's cooked, cleaned, shopped and washed along with waiting on me all the time. He's taken up residence in the boys bedroom because he's scared of knocking me in the night time. I've got a hooter which I have to beep if i need him (excellent!!!!). For the first few days home, I was in quite a lot of pain and felt sick and dizzy. In fact I slept most of the first 2 days, then went back to the clinic at the hospital last Friday. When the breast care nurse asked how I was doing, I just burst into tears and sobbed "it hurts so much". I was truly feeling sorry for myself and for the first time questioning whether I'd done the right thing. They sorted me out with some new different medication, checked all my wounds and removed most of the dressings. Apparently I'm healing quite well but was still very swollen. they advised me to move around a bit more to help it all go down. I do have some photo's which I have taken now that most of the dressings are off, but am undecided whether or not to publish them here as some people may find them a bit too much. For now I have set up a secondary facebook account, my name is Lisa Caroline, my profile pic is a pink gerbera flower and if anyone wants to see them, I shall post them there, all you need to do is request me as a friend there and you'll be able to see them, plus others which I'll take as I progress in my journey. (If through comments left here the consensus is that people do want to see them, I'll post them here too).

In the hospital

2008-11-17T16:04:00.007Z

The few days that I spent in the hospital were far better than I had imagined them to be. Other than for the birth of my children, I've not had to stay in before. I have a loathing for other people's snoring and was dreading being placed on a ward with lots of people around me wanting to talk. (Or lots of old people smelling of wee) I was very lucky to find myself in my own room, with my own bathroom. I couldn't believe it! The nurses were lovely, nothing was too much for any of them. Even though I chose to do this to myself, they were all very sympathetic and some were just plain in awe of what I'd done. They helped me around, washed me, fed me and made sure that I was as comfortable as possible with as little pain as could be. I felt somewhat nauseous for the last couple of days there, I think this was due to the high strength antibiotics that I had to take until my drains were removed. I think I've lost a few pounds, not just because I've lost a pair of D cups, but because the food was so awful, thank goodness for Weetabix is all I can say, I lived on it! On the 4th day, Mr Thomson came along to visit, checked all my wounds, removed most of my dressings and deemed me fit to go home, with a visit to his clinic planned for Friday, 3 days later I had a peek at what was there, from where i was looking down, it didn't look too bad, as my implants were inserted during surgery and will be gently inflated over the next few months, I'm not totally flat chested. There is a definite breast shape there, with a scar underneath and up to where my nipples would have been. Put it this way, they are going to be a lot higher than before and very perky! Unfortunately I forgot to pack my camera, but I did take a couple of snaps with my mobile before the drains were removed. I was in two minds whether I wanted to go home or not, strangely although I missed my family terribly, I was very scared of being away from instant medical assistance and also was still feeling quite dizzy and unable to walk very far. Alex got me a wheelchair and took me to the car. The journey home was very painful. Every bump in the road felt like someone had run over my chest. Within half an hour, I was back at home and opening cards from friends and family, having a cup of tea with nice fresh milk, not the powdered instant stuff.

The big op...

2008-11-16T14:40:00.007Z

Well as you all know now, I checked in on 6th for my operation. That was 10 days ago now and I'll try and update a little without doing myself any damage. I was only in hospital from Thursday until the Tuesday after, and have been recovering at home since then. Today is the first day that I've had no pain at all as I've finally got the medication right. Lets back up a little though and talk about the day itself. Alex took me in to St Albans hospital and I was actually in quite good spirits. I'd been up since 6am that morning as 7am was the latest time that I was able to eat, and I'm always starving in the morning. I had to be at hospital for 10.30 which meant that my op was scheduled for the afternoon. Once I was booked in I discovered that I'd be going to theatre about 1.30 and that I was the only op scheduled for Mr Thomson, my surgeon, that day. I was tucked away in side room so that he could come and draw some guidelines on my breasts in lovely black marker pen, then given my support stockings and gown to put on ready to go. The anaesthetist stopped by to check that I hadn't eaten and I was off. I was still doing OK, but started getting a bit anxious laying on the bed being wheeled off to theatre. Alex was allowed to hold my hand as far as the lift, but that was it. One of the nurses came with me into the pre op room and stayed with me while the anaesthetist butchered my left hand before deciding that she'd have to use the right to stick in the tubes to feed in my anaesthetic and later morphine. They were talking to me and I was starting to feel a little teary as I felt myself drifting off to sleep. The next thing I knew it was 9.30pm and I was back in a side room on the ward. I have no recognition of being in recovery, just waking in the room that I was to spend the next few days in. I had 4 drainage tubes coming out of my sides around the rib area and one more which was administering morphine as and when I pushed a button. I had expected to be smothered in bandages, but had only large sticky plasters covering my wounds. I'd also had to have 2 units of blood given to me during the op as I lost alot. My first sensation was that of having been hit by a large truck! It felt like there was an elephant sitting on my chest, I couldn't get a deep breath at all. I dont recall hurting too much because of the drugs, but I was unable to move my arms, in fact I needed a baby cup with a straw in to be able to have a drink as I couldn't hold anything. I told the nurses not to let anyone including Alex come up that night as I was in and out of a lovely morphine dream and barely aware of anyone around me.

Today's the day...

2008-11-06T08:45:00.006Z

Well the day is here. Yesterday passed without a chance to be able to put my thoughts on here, but it was a good day. I was up at 4am as Zane was so excited about his presents, but managed to get him to stay in his room til about 6.30. After a frenzy of unwrapping, the boys were off to school and I could relax. Alex stayed home from work with me, which was nice. I wonder how he's doing with all of this chaos, when I ask he says he's fine, he never talks about "stuff" so I can only hope he's being honest with me. I had visits from the whole world yesterday, partly for Zane's birthday, partly because they all wanted to see me. I said to my Auntie Jayne at one point that I actually felt like I'd already died and was watching everyone coming, it was very surreal. I cant begin to imagine how it must feel to actually be sick and having to face this. I had a good night though, it was lovely to see everyone, there were no tears (that I saw, anyway). I slept relatively well and feel good this morning. Well unfortunately, I don't have the time to ramble on, although I could easily do so for ages, I've got so much to say! I'm off. All I can say for now is big thanks to all the well-wishers and I'll see you on the other side!

Two days and counting.....

2008-11-04T10:50:00.005Z

Well, today is Tuesday, I have 2 days left to go and I'm not really sure how I'm feeling. I think I'm a little nervous, but kind of calm, like I'm watching it all happen to someone else. I've had a lot of time to myself over the last few days, but find that it's only thoughts of others that are popping in and out of my head. My biggest concern is not myself and how it might feel emotionally and physically, but for my children and how it will affect them. I know that Reggie is very nervous, quite panicky in fact. That may just be because I'm not going to be here and because I have no control over the length of time I'll be in hospital for, or it may be because of what I'm having done. any change to what's considered "normal" in their routine is enough to unsettle, let alone something that I cant reassure them about as I don't know all the answers. I've tried to explain to them that I'm not sick, just taking a big step towards making sure that I am around for their future. This also led to the conversation about my boys having inherited this gene mutation from me. Zane is too young to understand at nearly 5, but Reggie is worrying whether he has it and what it means to his future. We've talked about the fact that for men it's not quite such a risk, but he has a 50% chance of being a carrier, that's how it passed to me after all. The only thing I can say is to not worry now, nothing can be done until he as least 18 and even then, all he will have is the knowledge of a result, there is little a man can do to fight this gene other than not have children and not pass it on, which is a very personal choice. I do truly believe though that awareness is the way forward, who knows by the time my children are ready to have their own, there may be a way to cure/remove the mutation? So I'm getting ready, getting all my stuff together for the hospital, putting music on my MP3 in case that's the only thing I'll be able to do immediately and for a few days after my op. Tomorrow will be scary as the last day I'll spend with my family for a while, but also madly busy as it's Zane's birthday and the whole family will descend for a visit, plus Reg has a football match, so I wont actually get to sit down til after 9pm with Alex. I'm thinking that's when it's gonna hit me, but who knows? I'll let you know when tomorrow arrives.

A year of appointments

2008-11-03T23:04:00.005Z

08/12/07 - St Albans Hospital This was my first appointment, I went along with my husband to meet the Breast Surgeons without a clue what to expect. What I should have been prepared for was lots of groping(lol). From this visit onwards I think I've shown my breasts to more people than would have seen them back in the days on a beach in Tenerife! The routine appeared to be say hello, get undressed from the waist up and be prepared to be felt up while whomever was carrying out the task talked away to you, i found this hilarious! It's a good job I'm not shy, but Alex did look slightly unnerved! This followed on with an immediate mammogram, which was not the most pleasant experience in the world, but was OK. I was very glad that I'd had children and that my breasts were no longer as pert as they used to be, I never thought I'd be glad of a bit of sagging until I had to lay them flat on a piece of glass while a large vice was squashed down on top. Anyway, round 1 over, passed with flying colours thankfully. 18/12/07 - St Albans Hospital I was back again, this time for an ultrasound. This time I was wearing a very attractive gown which tied at the front as I walked through the waiting area to the room with the ultrasound machine. This procedure was far nicer than the mammogram. All I had to do was lay there while I was covered in warm jelly and had a probe moved all over my breasts and under my armpits. Not too bad if you didn't mind the people that kept coming in and out of the room, what's another 5 among friends? If you're going to show them to 1, they all may as well see. Round 2 over, again all clear. 07/02/08 - St Albans Hospital This time was a meeting with the Surgeon as my scans had been clear so far. I told him that I wanted to go down the path of prophylactic mastectomy as this had always been my aim, even before I was confirmed BRCA2 positive. He said that this would be fine and that I would be sent to see a psychiatrist at Mount Vernon Hospital for evaluation. 26/02/08 - Royal Marsden Hospital, Fulham I met with Dr Sue Shanley, Clinical Cancer Geneticist at the Royal Marsden to discuss my case so far and go over all the information already imparted to me to ensure that I understood all my options and that I was receiving all the screening options available to me for my breasts and my ovaries. Anything not done so far, could be done here. It was also another option as a location for having surgery. We parted with a follow up appointment made for a year later. 20/03/08 - Mount Vernon Hospital I met with the psychiatrist. We had a long chat and he told me that I seem fully aware of what I'm intending to do, with all the consequences and that I'm of sound mind. (Again hilarious, I wasn't aware that I'd gone there to be declared insane, just to follow protocol, plus I always thought I was a little crazy at least!) 08/04/08 - Gynaecological Cancer Centre, UCLH I met with Dr Ranjit Manchanda to discuss my ovaries. It seems that by having used the pill as a form of contraception for 10 years of my life, I've kept my ovaries young. (If only it was so good for the rest of me!) However, I do still carry around a 27% of developing ovarian cancer. A 1 in 4 chance, not something that I had even thought about before my first meeting with Carol. I had a vaginal ultrasound (thank goodness for having lost all dignity having children), which was OK. We discussed my risk, and there is absolutely no question that I shall follow my mastectomy with a prophylactic oophorectomy (which means removing my ovaries via keyhole surgery and prematurely putting myself into the menopause, joy!). For now though I shall continue with the screening, annual ultrasounds and 4 monthly blood tests which I can at least arrange myself as they are conducted locally and sent through the post. 18/04/08 - Northwick Park Hospital If my other scans had been a little challenging, then this one topped them all. While not at all painful, it was certainly one of the strangest things I'd ever encountered. Another charming gown, a needle in my hand of some solution to help me relax and the funniest position ever! I was laid face down on a very narrow table, with my breasts poking through two dome shaped holes beneath me. My head was supported by a foam headrest under my forehead and my arms were squashed at my sides. Add a pair of workman's ear defenders and I was ready to go........headfirst into a tunnel that didn't appear to be wide enough for a curvy girl to fit through. I've no idea how long I was actually in there, but I had a fabulous imprint on my forehead for quite a time after. Despite the earmuffs, the sounds of the machine were very loud and it was altogether just plain odd. A few days later I got the all clear for this too. round 3 complete.....all systems ready for action. 06/06/08 - St Albans Hospital Now that I'd had all the scans and was officially not insane, I was to be sent a date to meet with Mr Thomson, the surgeon who would carry out my surgery. 08/08/08 - St Albans Hospital I finally met Mr Thompson. He examined me as all had before and we discussed the various types of prophylactic mastectomy that are available to me. I've decided on implants which will be expanded every few weeks until we're happy with them. I'm opting not to have any fat or tissue moved from anywhere else, no flaps for me, just the minimum scarring that I can have. I'm also choosing to have my nipples removed, I really don't see the point in keeping them when they'd leave behind a further risk. If I'm going to do it, It's all or nothing! He asked me when I wanted it to happen, how strange! I asked if it could be at least the middle of October as I wanted my youngest son to be settled all day in his new (big) school. 08/10/08 - St Albans Hospital I went for my pre-operative assessment, height, weight, urine sample, medication history etc. I'm officially an inch taller than I thought, a whole 5' 7". woohoo.

Taking the test....

2008-11-03T22:23:00.006Z

Having passed the letter that my Grandad had given me to my GP, I received a referral to see Carol Cummings, Genetic Nurse Counsellor from the Kennedy-Galton Centre at Northwick Park Hospital on 23rd July 2007. I met with Carol at my local hospital and we had a chat about what ny Grandad's result meant to me and whether or not I wanted to be tested for the faulty gene. There was no question here for me, I wanted to know, good or bad, as soon as i could! Carol wouldn't take my blood at this time. We scheduled another appoinment for 15th August 2007 for this to be done and sent off for testing. Time could not pass quickly enough, each day seemed like an eternity.... I went back to Carol, taking along my husband Alex on 24th September 2007. She had asked me to bring someone along for support as so far I had chosen to do everything alone. She wasted no time in letting us know that I had positive result. The tests showed that I carry a c.314T>G mutation in BRCA2 gene. We sat side by side (Alex and I) digesting this new information. I think both he and Carol were expecting me to burst into tears or say something profound, but It wasn't really news to me. I think I'd have fallen off of my chair had she told me that I was negative. I think my sunny disposition was taken for shock, but inside I was actually happy. Happy to be able to finally do something about it! It was explained to me that as I have the BRCA2 mutation, I therefore carry a lifetime risk of around 60% of developing breast cancer (with 11% being average in the UK). My options now were to either go away and carry on with my life or to do something about it. Carol referred me to the Breast Surgeons at St. Albans Hospital for screening and also to the Gyneacological Cancer Centre at UCLH as my risk for ovarian cancer had also risen with my result, to around 27% (with 2% being normal). As there is no definitive test for ovarian cancer at the moment, I was to be put forward for the UKFOCSS study once I turned 35 in the following January. At the moment all they can do is to take annual ultrasound scans of the ovaries and take 4 monthly blood tests to measure the hormone levels in the blood. I knew that there was an increased risk for breast cancer, but the ovarian cancer part was news to me. This was bigger than I thought. So, the appointments began...

My History

2008-10-30T22:43:00.008Z

Firstly hey to anyone who's taken the time to stop by and visit with me. I'm writing this blog as a record for myself and for anyone else that it may help or interest, to record my journey from finding out that I'm a BRCA2 gene carrier to wherever it may take me as I make the choices which will shape my future. I always had an inkling that I carried a breast cancer gene since my Mum developed it aged 34. She had a good go at fighting it, but unfortunately passed away in 1994 when she was just 39. I watched her fight against the disease that overtook her whole body, deal with a mastectomy and chemotherapy while bringing up 3 children and trying to maintain her dignity and appearance. Watching her led me to say even then, that given the choice, I would rather remove my breasts than go through the same thing. Many years passed during which I nagged my various GP's asking when I could begin having regular breast screening, whether mammograms, MRI's or ultrasounds. always I was told that I was too young, I had to wait til I was 25, 30, 35, even though my own mother had been younger than that when first diagnosed! It was in the middle of last year that I received a call from my maternal Nan to say that my Grandad had been called back to the hospital as they had been able to identify the BRCA2 gene in his blood, despite having been previously told years before that he didn't have it. New technology allowed them to test further than ever before. We finally had a result and it was positive. He was given a letter to pass among the family which enabled us each to individually see our own GP and get a referral to the Genetic Counselling team at Northwick Park Hospital. This brought mixed reactions within the family. Did they want to know or not? What would they do with the knowledge? Was it right to mess about with nature or our bodies? My Grandad is one of 4 children. He had a sister who died of breast cancer, a Daughter who had died, his father had it, several of his aunts and many more that I never knew. He was devastated, thinking it was all his fault that my Mum got sick and that he'd given the rest of us a life sentence too. For me though, it was a blessing. I had at last been given the chance to find out for myself whether or not I had the gene