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

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

What is a Pre-Op?

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

6.45am  Alarm...eurrghh!

6.55am  Cup of STRONG coffee

7.10am  Lashings of anti wrinkle cream

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

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

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

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

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

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

Step One: Blood Pressure & Weight

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

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

Step Two: Chat & Questionnaire

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

Step Three: Bloods & Swabs

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

9.35am  Walked out of the hospital feeling good.

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

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

Weeeeee!! Here we go!

78. Breast Cancer Care Family History Forum UK

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

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

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

We talked of many things, like;

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

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

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

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

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).

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.