Tuesday, 30 December 2008

28. My own personal heroes - Part I

I think, before the year is out that I should dedicate a page to highlight a few very important people in my life..those that are there when I need them, when I have been sad, lonely, angry about all this cancer gene thing.

These people are special and I am blessed to have them in my life. There will be others along the way and those that I haven't sourced pictures for just yet.

Appearing in no particular order..

Chris Jones - My wonderful husband!

How I came to marry such a fantastic man is beyond me. I guess he was sent to look after me. I do believe that we were fated to be together and I was told (by a spooky friend) that I would meet him. I knew that he was the one I was meant to be with and all he has ever done is love me..regardless of my past, my present or the future. He is just always there and I sees me in all my guises..and he knows me.

Sometimes I just sit and smile that I am so lucky. I adore him!! Without him by my side, I am not sure I would be where I am today or be as mentally stable as I am through all of this. He is my rock.

Carol Crane - My Mum

Always calm, just takes everything in her stride. She has never faltered in front of me I don't think, not even when she went through her own breast cancer. She has been through so much grief losing her sisters to cancer, losing her father, supporting her mother through cancer and now caring for her into her final years. I know that when I need her she is there for me 24/7.

She is just kind and lovely.. I worry that I burden her with my woes sometimes.

I love you Mum - you are just gorgeous! x

My Jones In-Laws

Endless support and understanding from them both. Most people don't like their in-laws - mine are fantastic! Lori has the biggest heart ever and treats me like her own daughter. I am lucky to have all of them. Bob is strong and kind of heart.

I love you both very much x

My Friend - Sam Haydock

An endless source of humour and honesty. She is beautiful. I miss working with you Sam
(and Sue). Both saw me go through the initial panic of finding out about my gene thing..when Mum was going through her testing. I think this was the worst. I cried more often than not when talking about it all. They were both there for me, talking to me, calming me.

A true friend. Big fat hugs x

And last on this Part I page of heroes goes to..

Lisa Roy - BRCA2+

Lisa found me looking for info on Facebook and contacted me. She started a blog too and you'll see Lisa's blog, My Choce in my blog following list telling her own story after discovering she was BRCA2+. She's sent me messages of positive thought when I have had a blip (as too has Karen McCluskey - also BRCA2+).

She's shared intimate photos of her breast surgery and been strong throughout her journey. What else can we do but just get on with it? Sharing my own journey with others like me has made things easier to cope with, easier to understand and easier to reach out to others.

Thank you Lisa..you are a gem. Enjoy your new year, remember it always! Your first with your noobs and peace of mind. Enjoy and stay in touch x

Monday, 29 December 2008

27. Spin..spin..spin my brain, gently down the stream..


Yep, brain spinning. Why? The lovely doctor (gynae) has just called me, as promised, to talk about the option of freezing eggs or embryos. He was lovely about everything and above all else, above all his 'targets' set by the government, he was concerned that I make the right choice and in my own time, not in the 13 week deadline set by Labour! He asked me to think about it carefully, to talk through things with Chris and go and see my GP about the options.

So the upshot is that I CAN have my eggs frozen but it is less successful than embryo freezing and I CAN have embryos frozen, taking sperm from Chris (explained about the snip) and starting them off, bung them in the freezer for if/when we fancy putting a bun in the oven. I know its not that simple but just knowing that it is possible and I will still have a womb, that I CAN still have children beyond my surgery.

I know that some people will be enraged at the thought of messing with nature, about screening embryos and rejecting those with the BRCA1 gene mutation that I carry in my DNA. Those people who think it is wrong I would like to ask them if they have ever had an operation or got sick and been healed? That's also messing with nature, helping nature and not leaving it to make its own natural selection. This is not designer baby stuff, not choosing a girl or boy and tweaking blue or brown eyes, this is just choosing the best of the bunch for a healthy life. It is in fact less traumatic and morally wrong than screening for down syndrome and aborting a child showing positive results for the condition.

Quite frankly, laying it all out on the table, I am doing the NHS a favour by either not having children or screening those I might have - my gene mutation is costing them thousands of pounds as it is - imagine if there were many more of me..more gene screening, more operations, more embryo freezing.

I am feeling content that I have options. I am still a little nervous about delaying my ovary removal but I'm sure it will be fine.

For those that think I should just not have kids at all..ask yourself why you are on the planet and what you feel your purpose is.

I think we are all here to survive, to continue..everything on the planet strives to continue..to exist.

I've been fighting that and I just want to put it in a box for another day rather than make a decision now. I have been hurried into having a family by most of the health professionals I have met along my BRCA1 gene journey and I can honestly say that I am glad I didn't listen to them. I channelled my own path through the sea of "hurry hurry Leigh-ann, it will help protect you against cancer". No..no it won't, my mum had me and she still got cancer. The pressure and ticking of time and life hiccups have been immense.

I am free to think now.

Thank you Dr Charrier..thank you.

Saturday, 27 December 2008

26. Back home and happy

After all my scroogeness and "I hate Christmas" my family and in-laws made it just great.

We were relatively poor this Christmas due to my being out of work and it was quite hard.
It made me truly appreciate the wonderful gifts we both received and the thought that had gone into the surprises. I thoroughly recommend stripping away the materialistic Christmas that usually engulfs us all and take £100 and see what you can do with it. It was tough but we had to spread it around. Most of it went on my stepson and it was worth it - he was overjoyed with his gifts and is excited about coming to play with all his new bits. I made cheese and bacon twists for a friend (and shared out the rest!), donated an old digital camera, gave a money tree in a happy pot and a pot of jelly beans as some gifts. I think I spent my time realising how much I love everyone around me. A cold sunny walk to a hill fort on Christmas day was just what I needed too.

Right now I'm sat next to our bedroom open fire keeping warm because the damned boiler decided to throw a fit after Chris bled the air out of the radiators today. It is 2 degrees outside and we live in an old Victorian granite cottage...brrrrrrrr....the boiler people aren't open until tomorrow so we are snugged up here with the moggits and the tv. Hooray for log fires!!

Looking forward to seeing my Dad in March. He said he will be over in time for my operation - which is nice to know..I won't have seen him for 9 months by then. I think he is worried about my operation but I told him I will be fine..and it would be great to see him.

Anyway, not a lot of boob or ooph op chat today, just a happy but chilly Christmas. Hoping you all had a great one.

Only 1 mince pie and a third of a bottle of Baileys to go..then its all good eating again. My body doesn't like me at Christmas, I eat too many treats and luxury stuff and it is crying out for veggies and fruit..I can hear it screaming at me.

Detox and Wii Fit frenzy coming soon!

Tuesday, 23 December 2008

25. Great news!!!

I am not feeling crazy anymore..not that I was but just in case anyone out there was a little worried about me I'm just fine. This is one of the reasons I want to get rid of my darn reproductive system - its not my friend in any way and makes me irrational and far to contemplative for my (or my husband's) liking.

Time to relax today - going to visit a travelling friend today - go and be silly and let my mind free for a while. Nice..off to make soup for lunch first and get dressed. I am sitting here in my monsters inc. dressing gown still and its 9.30am! Shocking!

Wishing you all an excellent festive break..hope its not too full of mince pies and cream. I've had enough for everyone and need to sort that out in the new year. Hello Wii Fit...here I come hardcore stylee!!


Monday, 22 December 2008

24. STOP!!! ........carry on..

Am I going mad? I hope not. I have spent so long on the phone today speaking to every person that person diverted me to. I have 8 names and telephone numbers on the piece of paper in front of me. A couple of them, Sarah and Janet in particular, asked me if I had had counselling as the surgery I was due to undergo was life altering, especially the ovary removal. I explained that I had but that I didn't really feel I had been given all the avenues to investigate. Some people are good at research, others aren't..they expect the NHS to help them. I have had to find out these things for myself and no-one actually knows if freezing my eggs is an option...yet. Sarah has managed to speak to someone in the fertility suite and one of the specialists is going to call me on Monday.

What does this mean? It means that I will now have to put off my oophorectomy surgery. If my parents are reading this they may well be jumping for joy. What I feel is glad that I found out now and not after. I just need to know that I can revisit my feelings about children when I am on the other side of this crazy journey, when I am not anxious.

What I am anxious about is putting off my surgery. I have this stupid fear that I need to get rid of my ovaries soon though. Can I still have a baby without ovaries? Do I need them to make the baby grow? I haven't got a clue..this may not be possible and if it means that someone else would have to have the baby for me then I may as well just forget about it now because that is just not something I want to look at.

Why did it all get so much MORE complicated now? I don't know but I feel happier now and like I have exercised a demon of mine.

Maybe my little New Zealand dream will come true..outdoors, fresh air, a sheep or two (not for eating!!), the beach..maybe a family where its worth growing up. Maybe.

23. Freezing eggs

As I have said before, I feel like my life timing has conspired against me every step of the way in my desire to have children without hideous complication. It is now something I just don't feel I can be bothered with in life now.. I gave in to the fight on this one, but maybe only postponed for another day. What my mother made me realise on the phone last night is that there is still a chance that I might be able to have children, that the recent news about screening embryos (whether you agree with it or not) is an option for me.

Maybe I can freeze my eggs before I have them chopped out?

Has this been offered to me? No. Guess what I am doing now - finding out. If this is an option and it hasn't been mentioned or offered to me during my counselling in preparation for surgery, is this from lack of knowledge by the people leading me through all this or is it just not available? If I had cancer now, before I went through chemo, this would be offered to me.

I think I panicked yesterday because this is final..what I am doing is final - no ovaries - no children. I will keep you posted on this and I will find out. Imagine if I could find a happy, non-cancer worry place in my future where I had the energy to try. Chris says he would try if I wanted to. This makes the whole deal a little less 'final'.

If someone is strong and says they don't want something, shouldn't you throw all the options available to them to see if they bite? If they don't then they are sure. Because I entered the system with fear for my future children and had convinced myself that I NEVER want children because I can't deal with the consequences, they just accepted it, they never challenged me about it once. Am I that convincing? Maybe I am angry at myself but if I hadn't been so strong I would have faltered on the way, been desperate..this has been my coping strategy. Look what science has done..it has introduced a mutated gene free chink of hope. I am not ashamed to turn about face on this - I don't want to make a mistake. I want to be free of worry and then I want to see if I really don't want children for the right reasons.

Honestly, some days I wonder if it would just be easier to get cancer and just deal with it. Those who have cancer wish they had had the knowledge I do. I'm not sure that this is any fence to hang over admiring the view and wishing it was yours and not your neighbours. I think we both worry we could die, both struggle to get through days, both face operations, drugs, children, life.

I admit that the knowledge I have gives me a small upper hand over cancer but it is not a definite that I will get it - even with my gene mutation. There is still a 15% chance that I won't yet I make decisions based on the odds which brings a lot of emotional dilemmas, which is why I am sharing my story with you. What my personal journey has revealed is that although there is knowledge, the journey has only been walked by the few with the knowledge and the system to support those who do and who will again, is protracted and convoluted.

Maybe this blog of mine will help others in their own BRCA+ journey and even if it is just one person, all this typing and thinking and sharing will have been worth it.

22. Take a deep breath

..and relax. I am trying.

I bare resemblance to a frog this morning. My eyes are puffy and sore, tired but not green or slimy. After a difficult day yesterday I spent an hour in the bath and felt very, very alone. I realised that everyone I have met that is BRCA+ is not like me. Not one person.

I called my mum who is not one for having deep conversations and would rather not 'get morbid' but I think I made her see how much I needed to talk to her. I asked about her cancer, which just happened - lump found, cut it out, radiation - sorted. This is bizarre but thats the way she deals with things. She tells me I have too much knowledge and that too much knowledge is dangerous. I agree to an extent, but then too much knowledge will cure cancer one day - science will break it down to each little cell, atom - pull it apart and test is to destruction..with masses of knowledge. Knowledge is power. What I am doing is knowing my enemy so I can fight it. Too much knowledge has also made me slightly OCD (yes, I am slightly damaged mentally..) because I am a hand washer. I admit to the world (well, any readers out there) that I have phobias that are control based but it is mild and I keep it in check. Living all these years with the unknown have made me try and control my world a little and I know it is all connected to the BRCA journey, grieving, moving away from everyone I love..and lots of other things..all mixed up in a cauldron of worry. And today's recipe will make a lovely condition called OCD...taddaaaaa!! Magic.

So yesterday was tough. I cried for about 2 hours in total and I am paying for it today. What came out of my day of torment was the thought about the next generation of BRCA+s being born or who have already been born out there. They are blessed with childhood right now, ignorant in their wishes for Christmas, their birthdays, their tree climbing (do children still do this??) - innocent children. They don't know yet but at 18 years old they can find out, if they want to. In reality they will probably not realise the impact this knowledge could have on their lives. Teenage life, partying, having fun, growing up, life will get in the way and it will be blotted out as a future worry for most.

One day they will meet someone special..that's when it will become a reality.

Will their parents let them just carry on without a care? Will they pressure them to investigate? There is so much connected with the knowledge..the cursed knowledge.

This whole embryo screening thing has stirred things up and I need a new blog poll.

Saturday, 20 December 2008

21. The link of hope - embryo screening and the BRCA+ reality

Warning!! Controversial blog post going on here. I have been a realist on this whole thing, this BRCA+ thing.

If you are here because you have just found out about your own BRCA+ condition then I hope this post won't frighten you too much but it also lists the things that BRCA+ person may have to consider. For those lucky enough to have had children before knowing about their gene mutation the news today is fantastic, it gives hope for your children and their choices if they too are BRCA+.

It took me years to go through all these stages, decisions, thoughts. I had to list them all. This news story has rocked my foundations. I was steady, heading down my chosen path with unwavering thoughts.. and then this big monster jumped out in front of me. What do I do..what do I do?!! Think, thats what..think. So I blogged and thought and this is the result. It may seem quite angry but this blog is part of my self therapy, helping me vent, helping me cope. I hope it is of some use to my readers too.

This morning's BBC News report came a couple of years too late for me. Some of you (like my parents) might think this news is fantastic. I have spent so long conditioning myself to the prospect of living without children that this news just sent me into a spin. I just have to remember that it wasn't possible for me when I was ready, when I wanted a family - neither was my life ready.

Here's the BBC News link http://news.bbc.co.uk/1/hi/health/7792318.stm

I've spent a good chunk of today thinking about this. There have been times that I've welled up with tears, tried to talk to Chris, tried to understand why I feel so swung off kilter by it. So I put it into perspective:

The couple have screened their embryos because the FATHER is BRCA1+, not the mother. She is 27 years old and probably has the drive and desire to have babies. I did when I was 27..and years before that. The FATHER has the BRCA1 gene - what does this mean? It means that he doesn't have the same dilemmas faced by a woman with BRCA1. He doesn't have breasts and he doesn't have ovaries. Would he be having children if time was running out for him and he had the same life threatening risk and options which would take years to sort out? Can't be answered that one I'm afraid.

This is the black and white, consolidated reality in finding out about BRCA gene mutations :-

Got your Family history of breast cancer confirmed - investigate BRCA gene mutation..... ->

Age 30 - worried about family history. The NHS will not screen a woman until she is at least 30 years old. Hopefully things will change in the next few years as they learn more about genetic breast cancer. As they realise BRCA1 and BRCA2 can trigger cancer in much younger women, they may screen more women at a younger age. For me, I was 27 because I shouted loud but really it is not an option until you are 30 with a big family history. At 30 you have about 5 years of prime egg producing time left before things start to trail off towards menopause land. Stay calm - there are people out there who understand, who will talk and who have information for you. www.breastcancergenetics.co.uk is the site for information if you aren't getting any or can't find any and they run a helpline service open 24/7 365 days a year. Just pick up the phone and call them.

Age 32 - you are BRCA+. It takes 1-2 years to go through counselling in preparation for genetic testing results and to get DNA tested and results returned. Now you are 32 and you are BRCA+ but do you have a partner? Do you need to find one? How many years do you have to sort out the right man with so much else to worry about now that you have found out you are BRCA+? You need to think now..about you and what you want, how you are going to deal with this and what are you going to do next. There are options to consider:

A. Do you just want to investigate IVF and embryo screening programme? This will need counselling and probably a 1-2 year process to get to pregnancy if successful. Beyond children, you still have the gene and you still need to make decisions about your life.

B. Do you put faith into action and just go for raw baby making? There's a 50/50 chance of passing on the gene to the baby, whether boy or girl. The screening option will give your children options in the future if they are BRCA+.

C. Do you want surgery to remove your breasts and remove your breast cancer risk? If you want breast removal surgery it will take about 1 year to go through various counselling sessions to make sure that you are able to deal with this. For me its taken 2 years to get through the NHS system to the point of surgery date from the initial counselling after deciding to get tested for BRCA1.

D. Do you want surgery to remove your ovaries, go into menopause early and not have children? I was counselled heavily on this as it is a major decision. It is something I spent many years thinking about before I knew my my results. This is not to be taken lightly and you need to search the very bottom of your soul to decide this.

E. Do you ignore everything and just carry on with your life. Some people choose this but those people aren't here reading this and they wouldn't have taken the genetic test in the first place so E really isn't an option.

I hope that my BRCA+ sisters (and brothers) out there can push the awareness of this condition out there. It is not some random rare condition - it can be bred, increased - it needs to be faced head on. The impact on the NHS and people needing screening could increase as more people investigate their family history and demand testing. What if they do? The NHS need funding to support this cause.

I have decided to research as many personal BRCA+ blogs as possible and gather them together in one place. Sharing mine and others' stories will give those seeking support and information something extra, personal stuff that can't be handed out in a leaflet. This is a very personal condition, its not black and white at all. It involves many choices and can feel like someone put the fast forward button on your life. There are so many facets to consider and for some it will be overwhelming. I found the loneliness of my situation and worries quite hard and there was no-one out there to share it with or to learn from. I had to hunt long and hard to find people to share this with and it is only now at the point where I have made all my decisions that I have found them.

Thank you for Facebook and the opportunity it has given me to touch base with others who have BRCA+ gene mutations. I have made friends with some fantastic ladies. Together we will support each other. We are the foundations of the support system that is currently so disjointed in the NHS today. The next generation will benefit from the choices made by the women who face this today. We are the seeds.

I choose life.
I will not be broken.
I'm rock 'ard me.

I am here now, living, choosing and I am not going to die of breast or ovarian cancer, not if I can help it!

Not on your nelly.

Ok...blog rant over...and out.

20. More choice about music

...for you readers! See right at the bottom of the page: I found Billy Ocean - SO 'feel good' and memorable I couldn't resist and Bob Marley.


Friday, 19 December 2008

19. Restylin' and going to a private hospital!

So..I thought I'd make my eyes bleed with a heavy internet day - sick of the template so I thought I'd go spotty to match my complexion today. I was going to add a great tune to my blog that reminded me of my Dad - Bob Marley, Three Little Birds. I grew up with reggae music in the background of my life and I recall lots of ear bleeding Billy Ocean, "When the Going Gets Tough" (OMG Dad!). Anyway, I found another tune that is hugely important.. Space Raiders, "Laid Back" which played me into one of the hardest things I ever did before all of this BRCA malarky.. cremate my ex.

Had a bit of blip today too, probably the time of year, the music and my monthly cycle combined. The hospital rang to say that they are having trouble trying to get me a date for operation within their deadlines. The pressure for the NHS to perform is huge and I try not to give them a hard time. My stern attitude must have kicked that secretary into action (thank you hormones - use them while you can Leigh-ann). She was very nice, Janet, she told me I could go to the Torquay NHS or Mount Stuart private hospital. Erm...let me think a moment....erm the PRIVATE HOSPITAL PLEASE!! I felt a little safer in the thought that I would be one of only a few...not one of the many. Its quite sad that I would rather not go to the NHS because now I have a choice. I think the lady understood though and told me to Google Ramsay Health..so I did. It looks nice, small and nice and I will be in and out again in a day, maybe an overnight but probably not so its not big issue really.

I feel like I can relax a bit more now in time for Christmas..although I did cry earlier (stupid hormones again). I know there is a small part of me that is still sad at not having children but I will not let it consume me because, quite frankly, this is the best thing I can do for my health, both physical and mental.

Wednesday, 17 December 2008

18. Operation Ovary - When?

Hope this posts - having a very intermittent internet day today. Very odd indeed! Probably all the last minute Christmas shoppers online damn them!!

The very useless secretary of Mr Frappell (my ovary removing surgeon) finally called me back last week to tell me that she still didn't have a date for my operation and that she had to now put me on the waiting list. So what have I been doing for the last 6 weeks? Sitting on her desk? I kicked off a little and demanded that I get my date as soon as possible and reminded her about my March boob op. Why am I not already on a patient waiting list? I cannot understand it. The rules say that I have to be completed in 18 weeks which means she has until March which is just not gonna work. She tells me that she should have a date by the end of this week.

Today is Thursday..6 days have passed since we last spoke and not trusting that she would call me with a date, I called her. Guess what..NO DATE YET! She told me again that it would be some time in the middle of January, probably. I thought it would be nice to have some notice so I asked her how much notice I would get as it was now only a week until Christmas and I would likely not hear from her again until the New Year, to which she retorted:

"How much notice do you need?"

Excuse me? You can probably tell this woman doesn't enjoy her work and probably doesn't have to deal with demanding people like me everyday. I am peed off today as it is, my stupid womb is killing me and I truly want the thing shut down and stop working altogether. Today is not a day to be shirty with me, so I pretty much kept myself to myself today - in case I upset someone. I was nice to her, polite in a stern kind of way if you know what I mean.

I noticed her tone change slightly after she realised how rude she'd been.

"..erm..I have to give 3 weeks statutory notice anyway. There are two ladies waiting as well as you and I am still waiting for dates, I'm sorry I can't make it happen any quicker, we are waiting for management to make decisions about the extra operation slots list."

Hello lady!! I am not a nagging customer in a huge queue at Argos waiting for a fondue set to get picked..

"Item number 987, Ovary Removal Operation - ready for collection at Desk A now please ..bing bong.. Item number 987, Ovary Removal Operation - ready for collection at Desk A now please.."

Lets just hope the darn things don't mess up before she gets round to pushing this forward for me. I bet the other ladies aren't waiting to have their boobs scooped out straight afterwards..I would like some recovery time if thats not too much trouble!

So, I feel like I'm sitting on the lonely luggage conveyor belt with two other luggage shaped ladies waiting to be noticed, to be collected..

..going around again..through the flaps.. ..squeak squeak.. ..and out again.. ..squeak, squeak.. ..through the flaps.. .. squeak squeak.. ..and out again.. squeak squeak squeak..

17. The future's SO bright I gotta wear shades..

Timing is everything.

It makes comedy funny or not funny.
It cooks a meal to perfection or disaster.
It makes you early or late for an appointment.

Planning helps you beat time, to master time - to be in charge.

So here I am, planning - taking charge.

I have decided to go to university, the timing couldn't be more perfect if it tried. I do actually feel that the timings of everything in my life recently; redundancy, operations, work opportunity with the dearest Liz, family support..all timings have converged at this point - the point where I think beyond my high cancer risk life, my new future.

Life. Funny - I tried to think beyond before but it was all focused on now, the immediate future but now I have life plans. My horizon is expanding (I do hope that Dani in US is feeling this now, above her painkiller haze).

Things have happened recently that have forced me to think about where I am going. This is it, a new future. I sat with Chris and watched the clouds turn pink and orange as the sun set, watched the stars get brighter - watched the rotation of the earth as they moved across the sky. We talked about where we are going and I can almost feel the New Zealand grass under my feet. I will post some more on the subject of moving to another country with my genetic condition - it may cause a bit of a stir one day - another battle to fight but I will cross that bridge when I come to it.

The washing machine is on, rumbling away down in the kitchen alongside his friend, the dishwasher, who is also swishing along next door. I'm thinking about a cup of tea right now. A nice hot cuppa and some internet research..maybe a spot of bird watching over lunch later in the conservatory and then whisked away in the Jimster (Suzuki Jimny to you lot) to Teignmouth to see my stepson for the last time before Boxing Day (the 5th year in a row for me, the 9th for Chris).

Must get to the post office too - I am sooo crap! Its probably growing up with the internet that has done it you know, I lived without a computer once, now can't live without one - its all instant! My mother will never understand that the post office is just something I don't really do, I write emails not letters (and blogs).

Friday, 12 December 2008

16. A question for you and my opportunity

I'm following a blog called My Journey by Danielle Chase - she is in surgery right now in the US, maybe out of surgery. She has been through the mill with her emotions before her breast reconstruction. I know that come nearer the date I will start to become more emotional, maybe unsteady on my feet about it all but I will try not to think about all the little things. I think the little things can grow if you feed them. I have to stick to the basics. I am having a big 8 hour operation that will give me the rest of my life. That's it, that's all it is. But its not is it..its about my opportunity.

I thought long and hard about where I am going, what I will do with myself, how will I make the most of the opportunity that science has given me. I know that living with a high risk of getting cancer is not something most people even imagine. Most people just live their lives thinking it will never happen to them, that cancer is what other people get.

Where did cancer come from? Its not contagious like a cold..maybe its spent many thousands of years just killing random people but as it gets its arse kicked more often by surgeons and scientists, its found a way to keep going - its in the genes. Its not contagious, yet mine is, I got it from Mum and she got it from her Mum and she got it from her Mum..but where did it start? How many generations back? We will never know.

My question to you..

Would you cross a road if you had an 85% chance of getting knocked over?

Or, if the common cold became a killer disease and you had 85% chance of getting it but were told that you could chop your nose off and you would never get the killer cold..would you do it or would you live in fear?

I'm not chopping off my nose but its a pretty important part of your face, of your identity. I'm chopping off my breasts, those which help make me feel like a woman, my perfectly formed, pert breasts. I love them - they are great but I will be mutilating them soon, forever. Its not really an option, keeping them, not for me. I dream of the day when I can relax on the other side of this opportunity. Would you cross a road if you had an 85% chance of getting knocked over? If you had an 85% chance of winning the lottery, would you bet? What if you had a 15% chance?

Hmmm...that would make you think.

So, the opportunity to live..what shall I do with it? Well, I have decided. I am going to University. A second go at my life, free of my nagging cancer worry - a new start, a new career.

After leaving my great job as a Capacity Development Engineer for Orange back in 2003, job life in Devon has been dull. I left a career but I was so blinded by grief that I just took off to lick my wounds and left it behind. I have mourned for that job but I am back, my brain is back, my future is back. Its time to move on, to get on the career train again.

Lets go!

Monday, 8 December 2008

15. Fluffing my nest

I started to fluff my nest. The conservatory has been a non-plus room for us since we moved in 2 1/2 years ago so I have been resourceful in the last few days. My stinking head cold has passed from me to Chris and we are both sniffling, snotty slobs at the moment. Nice! Anyway, without any exciting job opportunities arising I felt I had to do something to improve the enjoyment of space in the home. I found www.freecycle.org - a nationwide recycling incentive managed by localised group moderators on Yahoo. Anyone can join and I am a big fan of recycling and free stuff.

I contacted a nice lady who was advertising a wicker/cane settee so I snapped it up for free and set about reorganising the conservatory so we can sit out and virtually be in the garden. I imagined the uncomfortable situation I will be in come Easter after my op and thought it was time to sort out a cosy happy space to spend my hours of convalescing in. I will be able to enjoy sitting out in the warm and watch the birds come and go in the garden, watch the plants grow through spring into summer, watch life. The re-org has proven a great success and I am clearing stuff from the house so that it feels positive and calm, not cluttered. Its amazing how long it takes to get rid of extra things you don't need or use anymore after a move. Its done now, there is little left that doesn't have a purpose or hold some beauty.

I am up here on the computer in my makeshift office space with no window and its a bit sad, its warmer than the conservatory but its sad too - no view. I need outdoors. I also need a job soon or my brain will turn to mush without the mental stimulation of work everyday. I need mental stimulation everyday, its crazy, I feel a little crazy. Plans are formulating..but what will it be. I am still holding out for one particular job but time will tell. I surely have a place among the thousands who are now unemployed out there - I am intelligent and conscientious..please dish me some luck.

Please..before I start dribbling.

Thursday, 4 December 2008

14. Food for the soul - my recipe

Aaahhh...gorgeous! Truly gorgeous. I made and ate my soup...mmmmm.

Chris had to go and post some 'proof of contact with his son' for the last 4 years to the CSA as his ex told them that he hasn't maintained any contact at all - which means she gets more money and he has been overpaying for the last 4 years as a result. She recently told them that he still had no contact, even though we collect and drop off his son every other weekend, on Wednesday evenings and 3 weeks of holiday over the year, hence request for proof and a refund of money. She is a bare faced liar. Will she get in trouble? No...good old fairness again. Excellent!

Anyway, he returned with a lovely soft baguette in tow and I served our favourite soup for which I have posted the recipe - if you are interested. It is far too good to keep to myself!

The biggest saucepan you have
Olive oil to just cover bottom of pan
Sage - dried - teaspoon
Rosemary - dried - teaspoon
(pestle and mortar together to powder and put into oil and heat gently for 2 mins)
Ground Pepper - a good grinding of fresh peppercorns
Chilli Powder - heaped tip of a teaspoon - just for a little zazz!
Onion - chopped
(Add to oil and fry off for 2 mins)
4-6 rashers of smoked bacon or lardons if you have them - 6 rashers gives good flavour without overpowering the butternut squash
(cook off for 2-3 mins stirring into onions, oil and herbs)
2 large carrots or 4 smaller ones - peeled and chopped
Butternut squash - peeled and chopped
(add both carrots and squash to pan of lovely bits and bobs and cover on med-low heat for 5 mins, stirring occasionally)
1 (or 2) veg stock cubes (depending on your tastebuds)
1 litre of boiling water
(when dissolved, add to pan. Must just cover the pan contents. If not, add another half or whole veg stock cube and make up with 500ml of boiling water as before and add until covering ingredients)

Bring to boil for 2 mins and then simmer for 20.
Take a slotted spoon, scoop out the veg and bacon bits and blend.
Add the blended soup back to pan and repeat until all the veg and bacon is blended up and mixed back together in the pan. Reheat gently if necessary.

Serve with crusty bread rolls...enjoy, enjoy, enjoy.

For those that don't think they like butternut squash - just try this..it is DIVINE!

Freezes well and warms your very soul. Yum! Yum! In my tum!

And now for some more job hunting..wish me luck

13. Positivity and rug pulling

Ok..post 13. Positive? Hmmmmm...sceptical today.

I have just had a phonecall from the people I have an interview with tomorrow..sorry HAD an interview with. I was preparing all my questions, putting all my positive into getting that job. The phonecall was to say, sorry but our budgets have been cut and we have to put the position on hold until further notice. This is great! Just great!

At least Gordon Brown has thrown some form of lifeline for us, the mortgage payment help. I can't imagine how we will cope otherwise. It looks like Chris might have to have surgery (maybe) and all before I have my op too. I am worried, very worried.

The swimming sea of worry surrounds me yet I feel positive. I will trudge on.

I am going to make my famous and ludicrously tasty butternut squash and bacon soup for lunch.

Food for the soul.

Today is not a great day but I am about to try and make it better...then look for more work and burn my retinas some more in front of the monitor.

Ho hum...life is glum x

12. My nemesis knows my secret

Who is my nemesis? Everyone who knows me knows but I'll explain. The woman who loathes me, the one who feels threatened by me, the one who barely knows me..the mother of my stepson.

Yesterday Chris (the hubby) had to go to the hospital for his first acute knee clinic appointment since I took him to A&E last week. The contact order allows him to collect his son straight from school ending time at 3.10 and as he has Parental Responsibility equal to his ex and should be able to designate a trusted other to collect his son for him if he can't make it in time..but no...she went mental when I did it and she won't even allow her son to hang out at his grandmothers house (which is around the corner from his school, literally) for the 30 minutes or so until Chris arrives. Her son walks past his grandmothers house every day and he is told that he is NEVER to call in to see her. She enjoys the same rights and anyone she likes picks her son up when she can't make it. Fair? No.

And what is this all about? Other women. She is frightened to death that she will not be the most important woman in her son's life. Imagine the shock she will get when he falls for a girl that she can't stand. Imagine the torment. Imagine the choice her son will face, lies, sneaking around, arguments, heartbreak, hatred. I feel sorry for the suffering he will endure one day because of her insecurities and I hope he is strong enough to stand up to her.

Sorry..that was off the subject but necessary for some background on the NEMESIS. I feel sorry for her, that her whole life is quite literally keeping up with the Joneses (ha! ha!). That everything we do she copies. They say mimicry is a compliment so I will look at it all like that but really, deep inside I see it as her keeping an even battleground - anything you can do, I can do better, no you can't, yes I can, no you can't..yes I can because I chuck money around at everything and that will win the day (we'll let her think that for a long while and then it will all come out in the wash!). I do things full of love and making the most out of nothing. I have honesty and love.

So, she knows. Chris stood on the doorstep yesterday on dropping his son back and told her that I have BRCA1 and am having surgery. I am glad that he pointed out that I don't actually have cancer. I am also glad he told her because it was in order to help her support their son if he is troubled at times about it. He is worried about me and its important that she knows so she can do some research and help him understand when he feels sad or scared or worried - if she can stomach supporting him over worrying about me that is, I hope so, for his sake. We aren't there enough to be able to and he knows his mum hates me so it will be tough for him.

She did actually say she would fit her plans around what we were doing over Easter (which is when my op is) which is a miracle. I know she goes through waves of hatred and niceness, she is a little unhinged in that respect, volatile.

I hope that she now realises more than ever how important her son is to us - he is my only son too and I love him dearly, across all the pain, hate, miles and time apart - I am always here for him and I know it will be difficult. I hope she realises more than ever that her son loves me as well as her and that she should be happy that he is surrounded by people who love him and let him love them back without guilt. Our bond will be more evident to her than ever as we near Easter.I am sorry to make him worry, he has enough troubles in his little life. I wish I could take it all away and I wish I could be there for him.

Tuesday, 2 December 2008

11. Rudely awoken, smears and the headache

At 7.43am I was sound asleep.

At 7.44am I was rudely awoken by my mobile phone ringing. On the other end was the gynaecology and obstetrics secretary who had been off sick for 2 weeks. I had to chase and call and leave messages everywhere for her as no-one seemed to be covering her job. She didn't apologise for the early call and rushed into an almost rant and incredibly random. I am not sure that she knew anything about me or what she was calling me about. At least she know that I had seen the surgeon about my womb area.

"Are you having a hysterectomy?"

No, no, I'm not but thanks for checking my file and notes before calling me. Thankfully she is not the surgeon doing my op or I could end up leaving without my entire womb and possibly a kidney or two. I explained that I was having my ovaries and fallopian tubes removed but that I needed to book an operation as soon as possible as I now had a date for my PBM (Prophylactic Bilateral Mastectomy). She wittered on about how they had changed all the waiting times and the rules and that it might be a problem. Is that really something I need to hear at 7.44am? Is this really something I need to hear about at all? Do you care? Do you think it would have been better to say, leave it with me and I will see what I can arrange and call you back rather than offloading at me because you are stressed that you have 2 weeks of work piled on your desk and you want to get my phone call off your list of things to do? I just want you to sort it out now please.

"Maybe they can do operation when you have your other surgery. It would save you having two general anaesthetics, but that's up to the surgeons."

Yeah, thanks for the suggestion, I would love to be under the knife for another 2 hours maybe, great. Then when I wake up I will have painful breasts, back AND groin region - nice one! Um hello?? How do you think I will be able to move? Do you think I want to be in hospital longer than necessary? No. Do you think I want to face what I have to face all at once? No, and thanks for the consideration.

Am I over reacting? No. She was vile. People skills, nil.

When she hung up I realised my dumbass cold headache was back and I felt crap again. Then I remembered that I had a smear test to look forward to. Yippeeeeenot!!

Not so bad, but I told the nurses that I was used to being groped these days and told them that I had just found out about my BRCA1. I told them that I was going to do surgery and explained that although it wasn't great news I was glad that I had a genetic cancer that they actually know about and they can do something to help me. They both looked quite awed, that's all I can say really. It was weird. As I walked home I realised that I had told someone other than my family and friends. It was an odd feeling. It made it more real.

I popped into the shop to collect some goodies for baking and the chemist for cold remedies..which I wish I hadn't. Beechams all in one gives me an intense headache. Not helpful at all. I'll stick to my hot honey and fresh lemon.

What a weird day it's been.

Sunday, 30 November 2008

10. I woke in the night thinking about the hot blanket!

..about the hot blanket. The what? The hot blanket, just like I said.

What the hell is the 'hot blanket'?

Ok, because I am going to have muscles pulled round from my back, under my armpits (wince now if you like) and through under my empty boob skin to make the new ones. I have to wear a hot blanket to help everything stay alive and happy and keep everything toasty.

Hot blanket is going to be 36 degrees Celsius!! For 48 hours!!

The endurance of this sweaty 48 hours will be one of the toughest parts, now that I am thinking about it. I am gonna sweat my arse off!! I had a vision last night of being completely at the mercy of the nurses, just lying there sweating relentlessly with nurses coming and going with dripping sponges washing me down to keep me cool. That sounds awful, like some Japanese game show.

"She's doing well, into her 24th hour now, only 24 to go. It must be sweltering under there. Imagine it..like being led in the desert under the beating sun, unable to move, in pain, sweating. Will she make it? Tune in tomorrow to find out in another episode of the HOT HOT HOT BLANKET SHOW!"

What the hell am I doing? I am sure it will be fine..I hope it will be fine. I hope I don't get irritable. How will I sleep? I think meditation might be a good way to go. Is there any way I can prepare for this bit? I think I will practice with my beloved wheatbag, my little friend who helps me through evil womb and back pain. I won't need him anymore after the oophorectomy but I am sure that my stepson will take him on to toasty up his feet on cold nights, the perfect bed warming device!

Damn..the hot blanket - I'm quite scared of it..this is such a small part in reality but I have to trust that I will make it through sanely and that I am quite good at dealing with varying temperatures. Although now I am worried that I might suffer with menopausal hot flushes too but that might not be such a bad thing, it might prepare me.

"Everyone cheer, here come the nurses. Its been a long, hot and crazy 48 hours but she's there, she's made it through. It's coming off. Remove the hot blanket! WOOOHOOOOOOOO!!"

I think I will order ice cream to arrive on the 48th hour - ice cream please, with extra ice!

9. Telling my stepson

Whilst sat in the conservatory trying to work out how to put the yellow Lego crane back together without the manual, Chris, my stepson and I had a chat about me and my op. I think at 10 years old he needs to know what is happening and that he doesn't have anything immediate to worry about, I am not about to die. It was going fine but then we mentioned the 'C' word and his little face went pale. I quickly reassured him that I do not 'have' cancer but that the chance of me getting it in my life were very high, much higher than the average person and that is why I am choosing surgery. I explained that if I just spent my life going to hospital for regular screenings, I could still get cancer and I would have to have operations then but it would be much worse so I may as well have them now while I am fit and healthy.

He looked so worried. We talked about it some more and later in the day I showed him the CGI video as it seemed to be the easiest way to explain what would happen to me and that I am going to hurt - a lot - and that I will need to be cared for. I think it made more sense to him.

One of my biggest issues with telling him is exposing my vulnerability to his wretched mother. I explained that she may not be one of the best people to talk to about it if he was worried as she wouldn't piss on me if I was on fire. He agreed and told me that he thinks she hates me more than his Dad because he thinks she is worried that he will love me more than he loves her, which is very probably true. Her insecurities cause him and us no end of problems and I am sure that when she hears the news she will skip around her house for weeks on end hoping that I die on the operating table. Do I care? Actually, no. If she causes any problems around then, we are stronger than she can ever imagine, untouchable. Anyway, that is just a small drop in the ocean of things at the moment.

I've just realised that I am going to have to get very busy in the garden in spring so that everything is sorted before I am incapacitated for a while! Chris will have to be on grass cutting and pond duty. Doesn't look like I will be able to get my gravelled patio area sorted this year unless some miracle gardening team whisk in and do it all for me - which is highly unlikely, unfortunately! Ho hum..plans for 2010 are forming already. Another delayed year.

And who is going to paint the house too? Bugger. Gonna have to rope in some family to help out I think. I can't have another damp winter, my house will fall down. I had so much planned. I wish that Chris gets some answers about his knees and he can live a normal, active life without pain. I wish with all my heart.

Friday, 28 November 2008

8. Weird thoughts

Ok, so I started thinking about the surgeon. He is human after all.

What if he has a bad nights sleep on the Sunday before my op? What if he drinks too much wine and feels a bit rough? Do surgeons drink lots of wine?

He looks like a nice, proud man. Neat and tidy with warm hands. I started to think about him a lot. He is going to be responsible for giving me new 'boobs' and chop up parts of my body. He is human and he has good and bad days too. I don't want to put pressure on him to do his best job ever but a secret part of me wants him to. I want to be his very best work! I am willing to show people the results, to share with others who are where I am today. Maybe he thinks that each operation he does is going to be his best ever? What the hell goes through his mind before an operation?

Should I ask him to join me for a beer? I could pick his brains, tell him to be a good boy over the weekend, take it easy, sleep well.. Is this me trying to control the situation as much as possible? Probably..how sad.

So, should I? He could kill me or he could save my life, the least he could do is join me for a beer.

Crazy..but there you go. What colour socks will he wear? He looks like a funny sock kind of guy. Maybe I should buy him some so he can wear them on the day of the operation.

Yeah - I'll buy him some socks.

7. It's all arranged!

I'm not sure how it happened. One minute I remember talking about the nitty gritty of nipples and scars, the next we were pencilling a date in his diary..planning my date with the surgeon for breast reconstruction.

Monday 30th March 2008

I told him that I am concerned about being smaller than I am now and although he is not keen on implants, I told him that I think being smaller will psychologically scar me for life. He agreed that it was important that he knew how I felt about that and would do his best to get the best shape possible with my back fat and muscle but would have some 'emergency' implants on stand by, just in case. I felt much better about that. I mean if I'm going to do this I have to feel happy about the end result. I felt quite selfish in my request to stay the same size as this man is trying to save my life and I trust him, I have to - if I actually had cancer and there was no way of having breasts again, I would just deal with the consequences in exchange for life. This is different, I have a say - I have a choice and I feel grateful just to be free of the high risk and feel cheeky asking for perfection.

Before today I felt very anxious with not knowing when to 'go ahead'. I guess there is never going to be a right time to chop your boobs off is there, may as well just get on with it. My biggest worry is about recovery. I am worried about how long it will take me to recover because I am still out of work and things are very, very difficult right now. I imagined being in a safe warm place in my life when I would plan all of this when Chris would be home over the summer and I could relax and get well, but its just not happening like that at all.

My Dad is living in another country, my Mum is miles away in Bristol, my Brother never calls me anyway, we are 40 minutes from my lovely in-laws and nearest family, I have few local friends since moving and my wonderful husband is suffering with serious knee pain and on crutches at the moment, drugged up with painkillers most of the time. I feel quite lonely but I am sure that people will be there when I need them, when it's critical.

On top of everything I have a cold. The last time I had a cold was 6 years ago and it was MASSIVE and I had it for a month... Reckon I went through about 389 toilet rolls, 5 layers of nose skin and a drugstore of Sudafed. The last time I had a cold, I was grieving heavily and I was wafer thin after losing Paul. Run down big time. Here I am again..in the pit.

I need a health plan. I am sure that it will keep me positive in all areas of life - I need it, I can almost hear my body begging me for it..for exercise, for fresh air. I am listening but not acting right now, there is so much on my mind that I can't even think about it right now..and Christmas is coming, and I am not sleeping good at all.

I just feel a bit confused today. It's real today. What if I get a job? How do I tell them that I have major surgery planned and need to have maybe a couple of months off work? It worries me and I don't want to jeopardise getting a job by having surgery. This is my BIGGEST concern at the moment - work.

I guess I will have to just deal with that as and when it happens.

OMG! 4 months..16 weeks (ish)

Tuesday, 25 November 2008

6. Christmas and tears

Had a conversation with Mum last night about my stepsons Christmas present. I wish she could be more involved in his life but its complicated. I felt terrible after I got off the phone, I realised that I felt sad for her. Tears just flowed and I felt so empty. My decision about surgery has effected everyone around me and I try to remember that it is about me and not about what they wished for in life. I have to do this for me. Grandchildren make old age worth getting old for I guess, little people to tell bad jokes to, love and squander money and time on. My brother has chosen not to have children too as his partner has MS and there's a risk of passing on the BRCA1 gene for him too. My parent's hearts must be broken.

My Mum has spent some time telling me about the latest newsflash about how magical science is and how embryos can be screened for genetic disorders now. This is the hardest part of knowing what I know - helping my parents to accept my decisions and that they will not have grandchildren.

Christmas is not fun for me. Christmas is about family and fun and children. It just makes me sad and I need to deal with that one day and do something good with Christmas time. When all the surgery is behind me, I will change Christmas.

Friday, 21 November 2008

5. Oophorectomy: I'll have my menopause now please, pronto!

I got a letter from my gynaecologist and obstetrician consultant, inviting me to call and book my operation for the oophorectomy. I am having both ovaries and fallopian tubes removed.(video link for info)

It was kind of a reality hit - this is it, if I do this it means never ever having my own children. But that's fine, I'm okay with that now, I am at peace and know that I have made my choice. No regrets.

It also means - T H E . M E N O P A U S E....by choice!! OMG!!

What will that mean for me? NO MORE PERIODS!!!

All together now.....


On the symptoms side..who knows, I might not flinch an eyelash but I might sweat my arse off at night or I might grow a beard (although the surgeon laughed when I said this and he said I wouldn't). It also means I have to super healthy and get out exercising more. Early menopause means potential bone loss earlier than the average woman in her fifties after menopause and also a higher risk of heart attack. I have to eat good (thankfully I cook from scratch all the time anyway so no shock to the system there) and get lots of sunshine (more holidays then - not a problem, apart from affording them)!!

Sorted! Do you think the NHS will pay for my shopping bill and future holidays in the sun then? Not likely!!

I have listed five website links below that explain about early menopause, osteoporosis and Vitamin D and Calcium.

Early Menopause - Info
Early Menopause - Risks
Eat Well - Vitamin D
Eat Well - Calcium

Basically, good diet and exercise will help things out but fragility in old age is probably likely, but that might mean I spend some time in a groovy racing stripes granny buggy but hey..that's better than death by cancer so I'm all lets go go go!!

If I can get hold of the darn secretary to sort it all out...ho hum. I guess a date will come soon. I think I will ask Santa for lots of bed sheets for the potential night sweats, a sack of soya beans and a two week break in the Maldives! Nice...

4. Should I have children or not?


To have children or not to have children? That is the question. I may ramble about this but isn’t the whole point in life to recreate?

This has been one of the biggest driving factors in finding out about the family gene. I have been through so many feelings on this subject I cannot fully explain, but the outcome has been based on many years deliberating facts and feelings.

In my early 20s I was full of enthusiasm and energy for having a family but I was with a man who didn't want children, under any circumstances. Not something you discuss on a first date but it was too late and I was madly in love with him. Most women figure the panic in a man about having kids is going to change as they mature, but its usually a no. 'Kids' were always a fighting point with Paul and I, and it broke my heart. I tried for almost 7 years to bring him round but I went through some very rough patches in the process, details which I won't go into, and I was hurt very deeply.

Paul was killed in a road accident 2 months after we got engaged but the honesty of the situation is that I had started to work out how to leave him so that I could have a family. I'm not sure too many people know that, but it is true. It didn't mean I loved him any less, just that my instinct to have a family was so strong that I would leave to find it. I remember telling him it was a baby or kittens. He chose kittens. It healed a gap for a while but I still wanted out but didn't know how to leave, it was all very complicated.

After his death, I started to question whether I was meant to have any kids at all. I was still worried about the gene thing and I pushed it hard with my doctors. Without a viable man in my life, I had lots of mental time to consider 'what if I have genetic cancer?'. In my time with Paul, my mum had a small breast lump found on a routine mammogram, it was cancer. Thankfully she had a lumpectomy, was very strong and just took it on board. I am not sure I ever saw her down about it, maybe it never sank in or she was just covering up. She'd lost two sisters to cancer and two aunties, her own mother and a niece had also had breast cancer. Maybe my mum is just very brave and used to heavy emotional stuff (unfortunately) and held it together for us lot.

When I met Chris about 6 months after I lost Paul, people probably wondered what the hell I was doing. I wasn't ready to love another man but I let him love me and I explained that I would love him as much as I could, but he understood. He watched me grieve. He was there through some of the hardest stuff that comes after the dust settles. In the early months I explained about the children panic I had. I was desperate for kids by now at 30 years old, but it felt more like a panic than a real option. I found out Chris had had a vasectomy some 5 years earlier and my heart sank, I was back to square one. I looked into how much it would cost to reverse it, what the success rates were etc. Not much chance. He didn't want more children anyway but wished he'd had his son with me and not his cruel ex. He'd been viciously scorned. Only days after his vasectomy operation around Christmas time he was kicked out of his home by his ex, separated from his 2 year old son. She let him have the op but knew she didn't want to be with him and waited until after it had happened before she destroyed his life.

As things unravelled between us I started to wonder if I would ever have children and questioned why I wanted them anyway, why was I continuously halted in my efforts for a family. Maybe it was fate. I think this is the turning point for me. I accepted that whatever I did, it was going to be very difficult. After two difficult years of grieving, fighting with Chris's ex for access to his son and moving home twice I sat up one day and realised that I had stopped wanting. I focused on my future health again, now that life was becoming more settled and structured.

I found out that my mum could have a genetic predictive test for a breast cancer gene on the NHS and I asked her if she would. I explained that it was so I could make a final decision about my choices of having children and so I could make choices about my future health. If I had the gene too, I wasn't having children of my own but if I didn't have it, I could look at the possibility, although a complicated one.

It took over 2 years to get her results. We were promised 12 months, but they had sent it to the wrong lab who took far longer return results. They knew that I was worried about my age and my youth to have children was slipping away yet the situation was dragged out to stressful lengths. After the first year, I chased the results. I chased, and chased, and chased. I was in limbo. Those 2 years were torturous for me. Finally, when we found out that mum had the BRCA1 gene and I got upset more than she did because I didn't want her to have the gene and I didn't want to have it either.

I was almost at my decision about whether I could have children or not by now. There was a 50/50 chance that I had the BRCA1 gene too and I had spent so much time thinking about it I accepted that I probably had it too and in the 3 years it took from getting mum tested to finding out my own results, I made a decision before I knew my own results. I figured it would make the news less of a hit. Pessimistic? Probably, but I have always been a planner, always two steps ahead. A problem solver. I prepared myself.

So, I gave up wanting children, I realised I had no interest in babies, in fact they were just smelly, vomiting, tiring and expensive things that I couldn't even afford in my life. Society is full of kids who take take take, who shoot each other, who drink and abuse. As I looked harder at reality, I found more reasons not to have kids. I finally listened to my body and it told me that it had had enough wondering, wishing, wanting. It was time to stop, it was tired. I weighed up my feelings about potentially passing on a cancer gene and realised I couldn't do that to a child, not with the knowledge I have. They wouldn't be able to do anything about finding out until they were 18 and I would spend even more time wondering, waiting. I thought about the potential guilt and sorrow it would bring. What if my children wanted kids? What if they felt the same as me about passing it on? What if I broke their hearts too? What if they resented me for it?

I was at a point where whatever the result, I was probably not able to have children of my own.

And then recently I found out. I was a BRCA1 carrier. I felt relief. It was over yet just beginning, and I was ready for it.

3. Surgery - the options


Well, I thought I should probably post what surgery is available to me. For the feint hearted, there is no need to worry - no real blood was spilled in the making of these videos – all CGI! It's probably easier to show you these than eventually explain what will happen to my body.

Video of Oophorectomy

Video of Free Flap Breast Reconstruction

2. Family history and BRCA1

So what made me investigate a cancer gene? My family history of breast cancer (and other cancers) which is pretty heavy-duty:

If you have one or two people in your family who have had cancer, it is highly unlikely to be a type of genetic cancer. Here is a link for Cancer Research that will give you excellent information if you are at all worried about this subject.

Cancer Research

So looking at my family history, it is hard to understand why a doctor would tell me I had little to worry about, but that's why I kept pushing to find out - for me.

What is BRCA1? Its known as the BReast CAncer and ovarian cancer gene. The BRCA part of my DNA is supposed to help repair damaged DNA but the BRCA genes are mutated and they put me at a risk of upto 85% chance of breast cancer and upto 60% chance of ovarian cancer development in my lifetime (to the age of 70). There is also BRCA2 which still carries a high lifetime risk of both ovarian and breast cancer but about 20% lower for both. It is known that the BRCA1 gene can trigger cancer in much younger woman than general sporadic breast cancer which tends to effect post menopausal women. With BRCA1 and aged 35 I feel like a ticking time bomb. It is not curable but loads of research is being done. Its only been identified since 1994 (see link below) but was a major discovery and a very imporatant one. At the moment though, there is no way of tweaking my DNA to repair the broken bits so I have to choose my path from here. Screening or Surgery?

My thoughts often play with the fact that I am a mutant, but only an 'identified' mutant. As my husband points out - I am not alone, there are many people walking around with genetic mutations its just that don't know about it. Not to worry you reader, but it is true but very unlikely. Genetic cancer is rare but I guess the knowledge of my gene mutation, although I wouldn't wish it and the worry it carries with it on anyone, it gives me options and hope.

Links - Cancer Research and Cancer Journal

1. Introducing me

I'm a woman who has lived with a nagging question in her head for 20 years. At only 35 years old that’s a lot of worry. There's been a question that persistently knocked on the door of my rational brain, telling me to pursue the answer. What is the question?

Is there hereditary cancer in my family?

At the age of 16 I vividly remember sitting in front of my GP raising my concerns of the very evident history of breast cancer in my family (7 women that I can name). I remember he almost laughed at me when I suggested it might be hereditary and told me that the chances of me having genetic cancer were so small I shouldn't worry about it. I was there to go on the pill and I knew even then that the pill increased the chances of breast cancer and I was concerned. Granted, in 1989 there was little information available about genetic cancer but I knew it was still possible - so many woman had been through or died from breast cancer in my family, it just couldn't be a 'coincidence'.

So here I am today, in the knowledge that I have the BRCA1 gene; the breast and ovarian cancer gene. It took me 13 years to get into the 'cancer care system' of the NHS. Initially they told me I was too young and couldn't be screened until I was at least 30. At 27 I found a lump and that made them sit up and take notice. Thankfully it was benign. It’s taken a further 9 years to go through screening, counselling, appointments, my mother's DNA testing, my mother's results, my blood samples and genetic testing to find out my own results.

In August this year, I found out. I sat next to my husband Chris in the MacMillan cancer unit, Derriford Hospital and the lady told me that she was sorry to say that the results were positive for BRCA1. I didn't flinch. I felt relief, my gut instinct has been right all this time. I was probably relieved because all the energy I had wasted worrying and planning and deciding 'just in case' hadn't been in vain after all. I think I would have fallen off my chair or burst into hysterical tears if she'd have said that I DIDN'T have the gene.

And now? Now I have choices to make.