#third question: prior; ok ok I got this i this I’m ready I’ve practise so many things for LS rs I got this Ye Ye Ye

[iced-souls]

[fionacoaton-blog]

BRCA1 - my story

From start to now I’m sat on my sofa while my 7months old son sleeps on me - not a usual event he just won’t settle today! So I thought I’d use this time to write down my journey in respect of my BRCA1 gene. For those of you who don’t know, BRCA1 (BReast CAncer susceptibility gene) means that the risk of developing breast cancer is at 60-90% and 40-60% of Ovarian cancer (source a beginners guide to BRCA1 and BRCA2). I have this mutation and found this out in the summer of 2013, this was a year on from being told by my dad that he has the mutation which was sparked from my Auntie Ann having breast and ovarian cancer. So the weekend of my 26th Birthday my dad and step mum had come to see me, we were going out for lunch but before we did my dad had something to tell me, I could tell it was something that was cutting him to the core as 1. It must have been tough telling me near my birthday (happy birthday you’re at a high risk of cancer) and 2. This was a parent telling someone he had made that perhaps part of his genetics could harm me. He pulled out a letter and began to explain to me what he’d been up to (blood tests/mammograms) and that he had tested positive for BRCA1 and that there was 50:50 chance of this being passed on to myself and my brother. Now the genetics counsellor told my dad to prepare for the worst, that this would rock my world and I would cry etc. But I didn’t cry, just took on board what he told me and immediately made the decision to also get tested. Looking back it was wasn’t a shock and I have no idea why I had such a pragmatic view on something so life changing! Now I had to wait to be tested myself. The test is a series of blood tests and talks with a genetic counsellor, they explain all the options available to you if the tests come back positive. I believe I had 3 trips to see the counsellor and on the third was results day. I had decided I already had the gene, I just knew. The counsellor sat me and my husband down in her office and was pretty dead pan - basically opened a folder and said ‘you have tested positive for BRCA1. It’s not the type of thing to can put a fluffy coating on. I didn’t feel shocked, I didn’t feel sad - I felt lucky. From that day I had been given a gift, something that so many men and women haven’t been given. I was put a waiting list for Nottingham City Hospital to meet Mr R D MacMillan who had been highly recommended to me. This takes us to late spring 2013. I had my initial consultation and it was decided that I would have a breast reduction to start which would save parts of my breast followed by a bilateral mastectomy with reconstruction. In the consultation I was shown the implants, could ask every question ever, even the most silliest like would I be able to sleep on my front with implants. My first surgery, looking back, is a blip! I went, I had the reduction and all I can remember is being at home itching to get back to work as I wanted normality. I have no idea why I can’t remember a lot of detail of the first surgery? I do remember the bruising which was a beautiful rainbow of purple and yellow! After this surgery I had gone from a 34ee to a 34c and a wonderful little lollipop scar. This was medal number one. A tick in the box and step closer to deactivating a ticking time bomb. Prior to surgery my surgeon advised me to really really moisturise, so everyday I would cake myself in soap and glory and twice a week exfoliate like a demon! Along with this I was exercising and eating a well balanced diet - which I stand by that hugely helped in my recovery! Following my post surgery check up I placed on the waiting list for operation number 2, the big one! In the lead up to the surgery I made it my focus to be able to run 5k, not a lot to some people but this was a big deal for me, I’d been given a gift of knowing how dangerous my body could be so I wanted to be as fit and as strong as I could get before surgery because this would help with recovery afterwards. So after 2months of practise I got to 5k!! A very proud moment in my life, my own little goal chosen by me and I met it! This was actually for race for life which the race was after my surgery so I wanted to know I could run is before as I most definitely wouldn’t be able to run it after - but I’ll get to that later. The big one, my opportunity to save my life - in part anyway. God the emotions of this breaks me even today. I lived an hour and a half away from the hospital and we’d made the decision to get up early and go over the same day. It was a beautiful spring morning and we got to see the sun rise, but I felt numb and anxious. I knew the hospital, I knew the surgeons and I knew what the pre surgery room looked like, yet none of this comforted me. I had my husband with me and my mum and step dad. My mum helped me put on my gown and my special anti blood clot socks (that was like stuffing sausages!) The busy hive of the ward kept me busy once we were there, with my husband holding my hand and always making me laugh! I was taken to the exam room to be drawn on (felt like I was in an episode of nip/tuck) now that certainly took my mind off the surgery as the room was filled with my surgeon, his junior, an anaesthetist, and 7 junior doctors - there I am at 27 with my boobs out in front of a bunch of strangers being drawn on and photographs being taken! Once that was done I was waiting to go down the theatre, I was second in the list. In those moments of waiting every second felt like an hour! The porter came to get me mid morning and off we went, my husband holding my hand, my mum and step dad pottering along with me on the trolley. I got loving kisses and then I was on my own. I was placed in front of a tv on the trolley while I waiting for them to be ready for me, this was so surreal - there is was sat in a bed I’d just been wheeled from one place another watching homes under the hammer! I always struggle to wake up from surgery and this time was just the same, all I remember is being so so hot and the nurses giggling to me about my underwear choice which made me smile but didn’t cool me down but it made me smile. So that was it, it had been done! I no longer had danger boobs, instead I had implants, with no sensation and drains. Ah! My beautiful drains! These are to collect fluid from the surgery sight and I carried them around with me in little bags for almost 2 weeks! My husband kindly emptied them everyday and measured the amount of fluid and logged it for me. The first few weeks post surgery were very painful, it felt like I had an elephant on my chest and a knife in my back. I couldn’t get comfortable which meant I couldn’t sleep which was causing cramp in my back. I remember we tried to get me comfy on the floor in our living room - WORST. DECISION. EVER!! I cannot even describe what that felt like, I’ve since had a baby and that wasn’t even as nearly as painful! It felt maybe like my whole upper body was in a vice but worse? When it was time to have the drains taken out we went back to Nottingham, the main reason for having them out was not only the fluid being at a low level but the left side where the tube was entering my body had started to leak! Having the drain out wasn’t a comfortable experience, but after the last few weeks it was lovely to get them out as I didn’t have to fight with the spaghetti tubing! Only advice I can give on this is listen the the nurse extracting the drains, she will tell you when to breath so that she can remove the drain in the quickest movement possible. After 3 weeks it was time to get moving again, I started with little walks around the block which made me feel very vulnerable, in a sense that I was only 21days post op and I was still recovering and the further away from my house I was if anything’s happened to me (like fainting) I wasn’t in a comfortable environment. But this started to make me better, I was moving and getting fresh air! And I think at this point I could have a proper shower and wash my hair (not having my husband attempt to wash my hair - I love you Tom but don’t give up the day job!) 5 weeks post surgery I did a 5k walk for race for life, this was signed up to before I’d been given a date for surgery and I was determined to do it with my best friend Nicky. We did it, we nattered there whole way round and we’re so humbled by every one there. She was there in memory of her mum and I was there for my aunty and my genetics. After achieving that little milestone I vowed to get back to getting back to fittest I could be with running and eating a non processed food diet (ok ok I still had the odd treat but I got fit and healthy). 6 months post - this was the hardest part, it was over for everyone else they had been on the journey with me up until the surgery and the recovery - so for them I’d done it and I was Fiona again. But I didn’t feel like Fiona, I didn’t know whose body I was in, I wasn’t prepared for this feeling. I’d had the realisation of what I had been through and it scared me and broke my heart, I’d made such a huge decision and been extremely pragmatic about the whole journey that this range of emotions completely took me by surprise. I felt lost and alone. Which is why I am writing this. For anyone who feels lost and alone about cancer or genetics you are not alone, even when you feel like your sat in a dark room (like I felt) there will always be someone there to turn I light on for you even it’s a dim light or a slow burner - it’s there. Try and find a positive and then hold on to that as that will get you through. This is my journey where I have felt every emotion going, I have only cried I few times about it all, as like I’ve said before this is gift being told you can save yourself to the best of your ability. I was extremely lucky to be part of the 2016 BCAM campaign with Marks and Spencer’s and Breast Cancer Now (which filled me with both guilt and gratitude) I felt guilty as I hadn’t had cancer, I didn’t know what the medication and chemo does to you, I hadn’t lost my hair and I hadn’t an enduring road ahead of me of further medication and test and I was grateful to have these wonderful group of inspirational women being brought into my life to make me realise how lucky I really am. They are strong women who are basically getting on with life as they also know how precious life really is. Anyone being given the opportunity to get BRCA tested, do it, why wouldn’t you do it? If I sat and give you a box and said inside this box is a way to help protect your life would take it, and that’s what knowing is, a way to preserve what you have. My journey isn’t over yet, at some point I’ll be back at hospital to have my ovaries removed as they are also little bombs that could go off but for now that’s at the door and I’m enjoying being a new mummy and a wife and focusing on what makes me happy.