62. My Race for Life

It's here..tomorrow..Race for Life fundraising 5k for Cancer Research UK. I've raised over £600 so far. Tomorrow will be hard last time it reduced me to tears seeing all those women doing something in memory of people who have died horrible deaths from cancer. This time I am not alone - there will be 10 of us with a long list of In Memory Ofs pinned to our backs. As a group I hope we raise some awareness about hereditary cancer and about BRCA Umbrella the support and social network I set up back in February.

I am excited to finally meet with Lisa, Susanne, Flo, Rian, Michelle and Elaine. I am proud of what we are doing and that I am not alone. I feel better for knowing that I shared my journey through all these hard, life altering decisions about surgery, feelings and life with these women. (Karen, Rhonda, Karen and Amy - I wish you were joining us!! xx)

So, to double check my packing, get some fuel, start my journey to Birmingham.

It's going to be a long day. I have to drive 4 hours in total and tomorrow I have to do my Race for Life..9 weeks post surgery. Whew!

Thank you to everyone who has sponsored me, your messages, your kindness. Thank you for caring about me and about my cause.

Time to go..time to leave :D

34. The future is firmer

I woke early and put on my gorgeous new red cord coat (I love it!!) and teal scarf..all positive and vibrant. I had clothes on too by the way - in case you were wondering for a moment there. I arrived at the doctors surgery at 8.30am ready for my 8.40am appointment..which was actually meant to be 8.20am!! WHAT?! Bugger..I even wrote it on my calendar straight after booking it - 8.40am. I even checked this when I came home. Anway..the receptionist said not to worry because the lady behind me had now gone in early so it was fine..but I did worry, I must have screwed up the whole day for my poor doctor. Arse.

I apologised to him profusely - Christmas and New Year had gone between booking and arriving and I was all over the shop during that time. It helps that he is an young, attractive man because otherwise I would be a bit fed up with myself for being late when I thought I was early. Instead I enjoyed the view and chatted openly about what was coming up and my dismay at finding out that my mother has slipped through the BRCA+ care net. She is only getting screened every 3 years and hasn't talked to anyone since finding out about her own DNA results. They have just left her behind. I am livid and I tell Dr Harris about this. He gave me copies of my letters to send to her doctor and get her back into some good care routine. I am gobsmacked that mum is left to fight her way back into the system!

When I've expressed my concerns about that, we talk about the letter he'd received from my breast surgeon, Mr Drabble about my 're-referral'. This means that I can now actually book the pencilled in date planned for 30th March 2009 for my surgery which was previously outside of the 13 week deadline the government have set for the NHS. C R A Z Y ! ! !

I guess most people just get sick and get dealt with. For people like me, who have a genetic condition and need to plan to have surgery..everything is delayed and nothing is solid or in place until 13 weeks before. Basically, I stressed how much I hate hospitals to my surgeon, told him I would rather have it done when I know my husband will be around to look after me while I convalesce. With his being a teacher, he has little time off and can only get 3 days to look after me...when I need at least 2-3 weeks immediately after. So we are 'planning' to have my surgery done around easter school holidays when Chris will be home. This meant that in October, March was too far away and was outside of the 13 week deadline!! So..(take a deep breath)...they write a letter to my doctor telling him to write to me to get me to book an appointment with them so that I can go back to Dr Drabble and book my surgery date in....!!! How stupid is that?

Dr Harris shared my opinion..but all said and done, he was onboard with the plan which is a result quite frankly. The NHS normally deal with people who are sick..not deal with people who will probably get sick eventually and need major surgery to prevent them doing so. Its strange, but because I am not sick, I feel like I am inconveniencing everyone around me and its planning it to fit in with them and not just for me. If I was poorly with cancer, everyone would just reach out and deal with it but this is planned surgery - not the norm. The NHS doesn't allow for people like me in their rules and regulations but the wonderful staff are bending them to accommodate me. That is lovely.

Oh...AND we talked about fertility and the recent news report. He looked a little edgy about it, telling me it was fairly new but that it was definately something to look into. He had referred me to Dr Attacheny (or something like that) who is the guy I spoke to over Christmas. Lovely on the phone and I am quite excited about meeting him in the flesh. I liked Dr Frappel but he was clinical (lol) and his secretary kinda sucked at her job!!

Ok..epic writeup over. Back with some more soon..keep you posted x

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.

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).

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.