Thoughts on recovery and for the future

Roughly 6 weeks post mastectomy. Part reconstructed!

The recovery period has been quite a surprise to me. I was fully expecting to ride an emotional roller coaster. Hm, well, if that was a roller coaster, then it was a pretty tame one; in fact, one I wouldn't even mind sitting on - and that's saying something. I don't do real life roller coasters - there is NO enjoyment there for me at all!

Physically - asides from some occasional aches, the numb-ness and the inability to lie anyway except on my back - I'm feeling back to normal. I cannot wait to go back to the gym and start building up the muscle tone again. 

I know my journey has been a fortunate one. I have had few complications, but more than that I think one of the things that really has worked in my favour is my own feelings towards my boobs when I was prepping for surgery.

I am so extremely lucky to have discovered my BRCA1 mutation at a point in life where the personal importance of my breasts was losing significance. I was 34. My youngest, Ellie, was 2 1/2 and although breastfeeding was still a great way of connecting together at quiet points through the day, she was not as dependent on it as her older sister. My boobs were no longer of the fantastically bouncy 25-year-old variety. One eyebrow was raised when my breast surgeon summarised my current cleavage in writing, using the most uncomplimentary terms of "ptotic" and "multiple straie". Yes, of course I googled those terms...you may too. Promise not to laugh too much.

If I'd discovered my BRCA1 mutation 10 years prior, my risk-reducing decisions would have been harder. Pre-kids, I had awesome cleavage and yes I definitely wore clothes that accentuated this! I may well have opted for surveillance in my mid-20's. 

If I'd discovered it with younger children, my decisions would have been harder still. I breastfed our 2 girls as babies, as toddlers and as pre-schoolers. Ellie weaned fairly naturally 6 months prior to my operation. I can't imagine how it would feel like to know my increased risk, whilst also wanting to continue feeding my children. And I feel that's the thing that I loved most about my breasts - the capability to feed and calm the girls. If I'd discovered it with young children, I may well have gone ahead with a risk reducing mastectomy - I would have been early 30's and with 2 children more fearful of my risk - but the choice to do so would have been emotionally charged.

And although it was a shock at the time when I found out about my BRCA1 mutation, and I was nervous of weaning earlier than Ellie wanted, I never doubted my choice to go ahead with a mastectomy as soon as possible. My breasts were done!

I did consider having no reconstruction and joining the "flat and fabulous" brigade. I've seen plenty of photos of non-reconstructed ladies and to me, they are no less feminine than someone with curves. In fact, some I consider more than beautiful. These ladies ooze strength. Some may not have had the option of reconstruction; others have made it a choice. Flat ladies, high five to you. No boobs make you no less of a woman.

In the end, I chose reconstruction because I decided I would prefer some more curves on my upper body.

I still have some work to do on my perspectives before planning an oopherectomy! This for me, feels like the harder challenge. Although I could see my breasts were no longer a massive part of my life, my female hormones definitely are. I'm nervous of the long term impact of ovary removal; of the effect on cognition, sexual arousal, and overall physical wellbeing.

If you're reading this and you are pre-mastectomy, I hope you find a perspective that allows you to walk through this experience and feel whole throughout it all, whether you choose to be flat, whether you're reconstructed perfectly, or even if things don't go as expected. To feel empowered, and awesome, and 100% a woman.

If you're reading this and like me considering oopherectomy to reduce risk of ovarian cancer, please walk with me and help me to see it in a positive light!

Much love xx

Capturing memories

I’ve found something to remember one of my favourite cuddly moments! Thanks to Northern Sun Prints, I have a beautiful print on the way that I can hang on my wall. 

It’s perfect and I am so pleased :) I feel like kick starting a whole load of other positive tweaks in my life too while I’ve still got the time off work. 

In other fantastic boob related news, all my chest dressings may be off in 2 weeks. The left side has had none for a while but the right side has suffered some superficial skin necrosis so has had to be looked after a little more. I saw Tracy today and she was pleased with progress. I also thought I had a massive amount of fluid collection in my breasts as they’re so much more shaped than 48 hours post surgery but turns out there’s very little left to drain indeed! The shape of my fake-boobs has very much changed in the last 4 weeks. People say it happens but I didn’t realise by how much until it happened to me. 

DRAIN AND CANCER FREE. I am a PREVIVOR :)

A distinct lack of posting. Probably the euphoria of HAVING ALL MY DRAINS OUT! 

Tracey took out the drains at our appointment last week, and gave me the awesome news that the removed breast tissue showed NO SIGNS OF CANCER! Which was brilliant. In line with her amazing efficiency, she then proceeded to remove dressings and drains at double speed. OWCH. Olga was gentle. Tracey was something else……! It felt like plasters were whipped off, drains were pulled with not a moments warning or gentle breathing preparation. I was shaking on the bed! It didn’t hurt per say; but it was extremely uncomfortable, and the pressure and force took my breath away. Shock x 2 would be the best way of describing it.

Jon was waiting downstairs in Costa - me having told him drain removal etc would take at least 1/2 an hour (that’s how long the nurses took!). So when I came downstairs after 15 minutes, rather pale and demanding coffee I think he determined pretty quick that it was not a pleasant experience……..

Life is so much easier without the vampire bottles. I cannot believe how long I ended up having them in - 22 days. This is the maximum permitted it seems before the risk of infection overrides the benefit of them being there. Sleeping is easier, and of course I can wear dresses, which is lovely for summer :) 

I spent the weekend at the European Babywearing conference - Roamy and I drove down on the Friday, sans children! Cue lots of Alannis Morrisette on the car stereo, lots of singing, lots of giggling and fun. We had cocktails and meal Friday night - networking at its finest. So lovely to have another focus asides from all the medical stuff going on. 

The babywearing conference also made me reminisce. I naughtily tried Ellie in a mei tai before heading off to the conference and sadly, front carrying was not a pleasant experience. My upper body weakness caused me to ache but what was more of a shame was I realised the frontal numbness just made the experience so unpleasant for me. Suddenly I realised that warmth from cuddling my children up close has gone - probably for ever - if not at least for the near future. I also tried a few light demo babies in some wraps and it felt similarly rubbish. I thought I would just feel nothing - but I feel an uncomfortable pressure. 

I’ve kept positive about it - how lucky I’ve had 6 years amazing cuddles with our beautiful girls. How awesome I can help other people have their own wonderful experiences. But I can’t deny that my heart aches a little writing this. It’s an era I shall miss. I’ve decided to make some photos of this and other memorable occasions to keep me smiling and proud of what has passed. 

Yep, I'm still moaning about drains....

Just over 2 weeks since surgery….4 weeks left of sick leave. Thank goodness. Not that I feel awful in the slightest - uncomfortable, yes. Twingy, yes. But awful, no. Just the thought of going back to Amex makes me feel crappy. 

I STILL have drains. I am one of those unlucky ones who clearly produces a lot of fluid (well, that and the strattice makes it worse, too!). I’ve been told the drains will be out early next week - whatever the output, and the relief of that deadline is massive. Even more than last week, I feel like the classic prisoner in the comic sketches, marking off the days on my bare cell wall before release day. Getting rid of drains certainly feels like a freedom moment to strive for. 

The drains are stinging now, too.. And so uncomfortable by bed time. And what’s made me even more grumpy is I have my period AND my nose is running. FFS, I am just a leaking body. 

My chest looks like a construction site. I’m considering buying some temporary construction tattoes to stick over my chest. Wondering if my surgeon has a sense of humour……

Just reading through the last few entries it all sounds overwhelmingly negative. Actually, I’ve been out quite a bit - combining hospital appointments with nice lunches, breakfast with friends, walks on the beach. Physically, chest area aside I feel really alive and well and VERY thankful I was fit and active prior to surgery. I think it has helped immensely. 

And I am forever thankful of my opportunity to reduce my risk by such a massive amount. All these things to be thankful for - but, sometimes, the daily drag of drains just brings it all down! 

Drain pain

2 weeks ago (probably to this day) I came to the bedroom, threw off my bra, gave a massive sigh of relief to be freed of my clothes and tumbled into bed. Turned onto my side, hugged my hubby (and probably the 3 year old so often in-between us), and drifted off to sleep. 

Tonight, I lie in bed, alone - everyone’s been kicked out in case they kick out drains - waiting for sleep to visit. I’m lying propped up on all the pillows i can muster and a small selection of downstairs cushions. I undo my sports bra (gives me some shape), wait for that tight, trapped feeling to be released - no instant relief.  The internal corsetry is in action. And that, so far, is life with expanders and drains. 

I stand up, remembering I need the toilet, momentarily forgetting I have 2 wires and bottles following me everywhere. OWCH. 

One day soon, the drains will be gone. One day further on, the expanders will follow. Counting it down like a prisoner with a wall tally chart….

5 days out....

Started well albeit early - sleeping awkwardly on 1 V shaped pillow, 4 pillows and a cushion doesn’t really encourage a generous lie in! Had my 2nd shower since surgery, felt DIVINE! (even with one arm sticking out of the shower to hold the drain bag.) I’d bought dry shampoo prior to surgery on recommendation and I’m glad I’ve not had to use it.

I’m really impressed by how quickly my arm movement is returning. I briefly saw a physio 24 hours after surgery and she ran through a list of essential exercises for the early post-operative weeks. We ran through them all - simple stuff like shoulder shrugging - and I was in agony and dosed up with morphine shortly after. Today, these movements - shrugging, reaching behind by back can be done with no fear of pain. Made showering, making a cup of tea, simple household stuff so much more possible. I must be careful not to overdo it too quick!

I’m less than impressed by the drains. I’ve developed a new hate for where they’ve been sewn into me - these points sting, are really sore, and if I lean in certain positions it brings on pain. I’m extremely worried about them being taken out - one of the doctors, Jack, says most people don’t feel anything……but I’ve had drains out before…..and I wasn’t in that “most people category” then. Mental note to dose up on oromorph before they do it as i understand no pain relief is usually given.

I think 2 drains may be out Tuesday…….half looking forward to, half dreading that date.

Hubby and the kids were out nearly all day and the initial excitement of being able to watch “grown up” tv all BY MYSELF IN BED has worn off. Watched a few things, flicked, did some paperwork, briefly saw my parents. By midday I was shattered and I drifted off mid afternoon……waking up an hour later in a horrible, depressive fuzz. I felt terrible. REALLY terrible. Some facebook friends cheered me up no end with some chatter but it took a few hours to snap out of it. It felt like the beginning of a major depressive episode. 

Challenge Monday is to leave the house and go somewhere. Just. Somewhere. Different. I’m sure that will lighten the mood! 

3 days out....

I was admitted for my risk reducing mastectomy and expander reconstruction on Tuesday morning, my 35th birthday! I was becoming fairly nervous but managed to get 5 hours sleep the night before. The hospital prescribed “pre-load” to drink before the op; a carb-heavy drink that helps your body cope with surgery by providing a big dose of energy. I stuck some straws and fruit in it and pretended it was a cocktail…..!

Jon and I were up by 5.30am to drive to the hospital. When we got there, we were in the pre-op ward with other patients, being given the lovely super sexy compression socks and gown combo. It was nerve racking waiting for the surgeon and for everything to happen. My main concern was that I wouldn’t wake up from the anaesthetic! 

The anaesthetist met me before the surgeon and described her plans. Then Tracy’s assistant surgeon popped in and began drawing on my chest. She was concerned (!) I’d lost some weight since my last hospital visit in March….

Minutes later, Tracey swooped in and took over. She confirmed that due to weight loss, they would have to use strattice (pig skin implant) to assist with the reconstruction - which was fine by me, I was always aware it may be a necessity.

After this, the anaesthetist popped in again and advised she would be giving me a spinal block to assist with post surgery pain relief. And then, after this, all go! I was wheeled out of the ward in my bed and taken to various “holding bays”. Then to the anaesthetic room where my anaesthetist and another specialist put a line in me, gave me some relaxant and did the spinal. After the spinal, they must have given me the general as I remember nothing more….

1.30pm ish - I am woken. I remember feeling pretty angry to be woken - I felt like I was having a nice rest! And it was a sudden wake up - and I wondered where on earth I was. And then I remembered. And then - I felt … PAIN …. lots of PAIN …. not from my chest but my arm. And I was shaking my head left and right and asking what they’d done to my arm …. and the morphine was being administered - but it was not helping. Then the nurses discovered they must have hit a nerve when they put one of the lines in - line came out - things improved. 

I was moved up to Elstead ward and wheeled into a small room with 6 other beds. Amazing countryside view, right next to the window. Only to be told that “I couldn’t be next to a window” (tracey’s orders). So I left the welcoming room and was put in another, right next to the nurses station. A hub of activity!

I was offered plenty of water and toast - and encouraged to eat as soon as possible. No one warned swallowing may be an issue….and I spent a good few minutes half gagging, wondering if I was about to choke as little pieces of toast just sat in my throat. Decided to wait on eating a little longer! 

5pm ish, Tracey popped round, describing the operation as a success and reminding me what a fab thing I’d done on my birthday. Ha. Ha. Ha. Wasn’t feeling it right at that moment. 

I spent 2 nights in Elstead ward and that was enough. It wasn’t unpleasant surroundings - but it was enough. The first night I was wrapped up in a blanket and forbidden to move from the bed due to the spinal. I needed to wee - I’d been making sure i drank - and I was given the bedpan. Therein followed a series of disasters through the night - needing to wee, not able to wee, trying for ages, not being able to sleep because I needed to, then at some point later evening….I weed! but all over the bed. I had a male HCA looking after me and him and another nurse had to change me and the bed. I was mortified - the lowest amount of dignity I have ever experienced. Sitting on the commode the following morning was an ecstatic moment! 

24 hours after, I peeped at my chest area. I didn’t know how I would react but actually better than expected. Sitting up in bed, my first thought was how light I felt, a novel feeling - my breastfeeding boobs were frequently heavy. It wasn’t unpleasant. I wondered whether I would become an olympic runner, I felt so streamlined and free! 

I discovered in the 2 days at hospital that I felt like I could conquer the world in the mornings….and awful by the afternoon, with overwhelming nausea (occasional vomiting), and exhaustion. Made a note to do fun things in the morning and crash in the afternoon. 

The other ladies on the ward were brilliant….we all trooped on together, encouraging each other when one started to feel ropey. Most ladies there had cancer and had either had exploratory or tumour removing ops and I was amazed at how positive so many of them were. When you’re on a ward you hear their stories, you hear what the doctors are saying, and you feel like you know their medical history and prognosis fairly well! No issue is taboo. Everyone knows about everyones toilet issues!!!

It was another helpful reminder that I am so privileged to be on a preventative journey. I hope more people become aware of their risks and are able to be proactive throughout their lives. No one wants to be in the position many of the other ladies were in. 

I seriously doubted my ability to leave 2 days out of surgery - 2 hours before my discharge Ana (one of the lovely nurses) was still pumping me full of anti-nausea medication as I felt awful. Ana also helped me remove some of my surgery dressings. She was SO patient. I was relieved to get dressed after, and it was when I put on my cardi and looked in the mirror I realised although flat felt physically good, I didn’t like the way it looked. Thankfully Helen (breast care nurse) arrived an hour before I left and found some fake cleavage for me. I’m a bit worried it makes me look like a rather pert 20 year old - and the possibility for “wardrobe malfunction” is tremendous - nevertheless I am grateful for my “softies”. 

I was both worried and relieved about going home. I was worried the children may find it hard to see me unwell, resting a lot, with 4 drains poking out of my gown. I was worried Jon may not be able to cope looking after me and the children. I was relieved at the prospect of my own bed, my own food and seeing my family. 

Turns out the children were brilliant - they’ve been, on the whole, very gentle. After a day at home I’ve now explained to Hope about the drains and she’s more curious than anything. She doesn’t like that the bag gets in the way of cuddles but we’ve worked around it! Ellie, being 3, remains full on - expecting me to get down, play and be mummy. I’m so glad hubby is at home full time to help for 2 weeks and that people have been taking them out for us. 

Bed is wondrous but it is hard to find a comfy point. I’m currently typing this with 3 behind me, 2 under my legs, leaning vaguely sideways. I’m aware this may continue for a while! 

4 days to go...

Completely real now. Keep staring at my boobs and feeling them and mourning them before they go. They suddenly tell stories that I’ve never really pieced together before, how they were in my youth and my beautiful curves. How they were loved by my husband (and a few other onlookers!). And more importantly what they became in mother hood, feeding and growing and nurturing and loving 2 children from birth to toddlers (and longer, in the case of Hope!). 

And that, soon, in a few days, those will be gone. And I will be temporarily flat chested, deeply scarred and in pain. 

I saw a photo on one of the Facebook groups of a lady, in tears, 3 days after PBM. Saying she had been like this all day and was it normal and would it pass? And so many helpful replies saying the emotional side is hard to recover from, but it passes, and you move on, and there is a new normal. And I guess I’m psyching myself up for this, accepting that I will grieve, and it will be deeply, but reminding me that I must also start collecting and repeating those affirmative statements about why this is a good and positive journey. 

My friends have been amazing. Totally amazing. I had a (mostly) surprise meal at East Beach cafe a week ago with 10 people - most of whom had never met each other. Kim made a box up of goodies that everyone contributed to - little travel mug, crossword books, toiletries, knitted boobs (of course!), snacks. And then Roamy gave me “the book”. Which I haven’t delved into yet but it looks amazing. It is for the very darkest of moments pre and post surgery. 

It's all sinking in!!!

The reality of surgery in 7 weeks is definitely sinking in! My mind is filled with “how will I cope with the pain?” “Will we manage the kids ok?” “How much will I miss my boobs?” “do I want some memento of how they were?”. This is reflected in my sleeping…….had some odd dreams and some pretty mean nightmares amalgamating previous fears of not being prepared for exams with current fears of surgery, fear my choice of date is wrong, etc. It’s not every night, and I’m just accepting that this is part of the path. 

I discovered this week that a few of my really good friends are on holiday while I am in hospital, and this refreshed my idea of making up something positive to keep me going. So I asked some friends to put together a book for me! And to fill it with things that will make me giggle, or positive and uplifting words. Roamy has risen to the challenge and is being an absolute superstar sorting it out. I am SO thankful! I am looking forward to getting it but am saving it until after surgery when it will be most needed. 

I’ve also been upping the gym workouts and it’s such a release of tension from bed times, crazy kids, day to day stresses etc and is keeping me focused on the things I can do to make this journey easier. A fellow BRCA sister suggested working on my core muscles so I can sit up without using my arms….which should make things easier post surgery. So I’ve been frequenting the rower…. :) 

Sunday morning reflections.....

Sunday morning…….accounts and admin sans children…..and a couple of minutes with a cup of tea to pen my most recent thoughts and relax……..

I had my final appointment with Tracey before surgery goes ahead……went by myself…..the hospital, the baring of boobs, the professionals….I didn’t think they “fazed” me anymore! Ellie needed picking up and I was more comfortable with Jon doing that that her crying with someone else. 

The appointment was absolutely fine, more prodding, more poking but I felt Tracey did not at least spend the WHOLE time talking to my chest! Measurements were taken for implants. It was all straightforward. I found myself devoid of questions as I think I’d posed so many to nurse Helen! 

Much hilarity…..best date for the surgery ended up being my birthday! It was either end of May - which was a fairly secure date due to being after a bank holiday - or another date in June - moving the whole process back again, and also more uncertainty. It only took me a few hours to realise May was better. The fact it’s my birthday is neither here nor there now - I’ve spent enough significant dates doing things I would rather not have so have learnt celebrations can be flexible…….the rest of life (business, kids etc) not quite so. 

Oh…..and the medical photos! So weird. I didn’t expect to be sent down to a professionally set up studio in the hospital basement. And have a younger guy just stand there and snap away while I bared all. I don’t know how I envisaged the photos being taken - but it wasn’t like that. Doesn’t make any other photoshoot feel at all daunting any more! 

For the first time last night since the beginning of all this, I struggled to get to sleep. Surgery with 6 weeks recovery (give or take) is pretty big! It is sinking in. I need to have some strong visual reminders that this is a good journey, a positive journey, a preventative and empowering journey…..something my future self will be thankful for. Off to research some ideas!

Feeling SHIT and finding the good...

The past few months I’ve really come to peace with this risk reducing journey but today? Well, I feel shit! Yesterday I finally got my referral letter through to see the surgeon - hopefully for the last time before surgery - and, I guess, it just made that reality come a step closer.

That in just a couple of months the boobs I developed will have gone.

No more milk. No more warm boobs. No more sensation.

No more nipples.

Gone! 

I’ve learnt that it’s ok to have brief pity parties. I think you could say I’m currently entitled to a fair few right now. 

But I’ve also learnt that prolonging it isn’t great either! 

So, now, on paper I am going to DECLARE OUT LOUD why this journey is a good thing. I am going to take control of my perception of what’s going on and I am going to tell you why it is a positive milestone in life. Not something to be scared of, or change me for the worse, not something to cry about (well, not too much anyway)

3 reasons I feel grateful for this journey: 

Firstly, and most importantly, I have been given the opportunity to significantly reduce my risks of developing breast and ovarian cancer. The Royal Marsden BRCA1 and 2 patient guide states the average risk of a woman developing breast cancer in their lifetime is 12.5%; however, women with a BRCA1 variation have a 60-90% lifetime risk. Having a BRCA1 gene variation also increases the chance of that breast cancer developing earlier in life, and also having repeat breast cancers rather than one single incident. 

Knowledge is power; as I have been tested and was found to have a BRCA1 mutation, I have chosen to reduce my risk by having a preventative double mastectomy. By doing this, my lifetime risk of breast cancer falls to 5%, which is a lesser risk than the general population. 

And so, I am grateful for this journey; of discovering my inherited risks and being able to reduce them

Secondly, discovering my BRCA1 mutation enables my children to do the same. 

And so, I am grateful for this journey; I have empowered myself. Hopefully the same information will empower my children to make life saving choices for themselves also.

Thirdly, it has encouraged me to take control of other areas of my health. Although the mastectomy is one of the biggest steps I can take in reducing my risk of breast cancer, lifestyle factors also play a part in cancer development. When I learnt of the BRCA1 mutation, I began to take control of my diet. Previous to the past year, I would describe myself as an emotional eater. I had a massive sugar addiction; I used it to regulate my mood, some days I would plan my day around where I could go to get a sweet treat.

I took a gradual approach to changing my diet. I love variety in what I eat so I discovered healthy recipes that still packed a full flavour. I gradually eased off snacking by replacing the plentiful sugar snacks with almonds. 

The next step is to do more exercise…..yeah, I’m still working on this one….I think I need to write down some goals! 

And so, I am grateful for this journey; for kick-starting a new attitude towards my health and lifestyle

Waiting...

Ellie’s at nursery, and I’ve just had a moment to put my work down and write about all that’s happened over the past few months BRCA1 journey wise. 

I recovered from the September gene clinic which really was a shock to the system. Meeting all the specialities at once was good calendar wise but overwhelming! So overwhelming. There were tears afterwards, and sadness, but it did pass. 

Two months after I travelled to East Grinstead to meet Martin Jones, an amazing reconstructive surgeon specialising in using other body tissue to recreate the breasts. This was really helpful and he was an absolute gentleman, putting me at ease as soon as I stepped into the room. It helped that I only spent a few minutes de-robed, and most of the consultation happened with clothes on! Martin explained he could use thigh fat to reconstruct the breasts (up to about a C cup size). He showed me lots of photos of his previous work and I was amazed by how neat and natural some of it looked. However, just as I was about to submit my body as a living work of art to East Grinstead hospital, he pointed out that the hair travels with the tissue………and I didn’t fancy hairy boobs (especially pubic hair!)…….so as impressed as I was, I made my mind up to go back to Tracey at Royal Surrey and go with implants. 

After this, I had a very frustrating wait for various specialities before being able to go back to Tracey. A prolonged case of telephone tennis finally landed me an appointment with Helen, one of the breast care nurses. I was curious about the implants, the surgery and the recovery and after 90 minutes of her time I felt we left no stone unturned! 

My final challenge before the surgeon appointment was to book in with the consultant psychologist, another necessary step in the pathway before committing to surgery. I’d been waiting for an appointment since September, and then, just out of the blue in February I managed to get an appointment 2 days later. 

Katherine was fantastic; one of those people who is positive, yet realistic, who reassures you, builds you up and gives you plenty of space to talk. I honestly did not think it was possible to spend 90 minutes talking about my relationship with my boobs (peppered with a lot of stray chatter as we both seemed to like to talk!) - however it was. And although at the time I didn’t feel it necessary, the meeting has helped me affirm my feelings and has really boosted my morale along such a tough journey. I think it would be hard to meet Katherine and NOT leave feeling better - whatever you happened to be going through. And I did not feel run down in the first place! 

So, for now, I’m back to waiting. Waiting for an appointment for Tracey; which will hopefully lead to a more concrete idea of surgery dates. I’m trying to be patient. I’m ok at it ;)

Slowly moving through this journey, I’ve become to realise the waits have been both bad and good. Bad - in that I’m really bored of basing my life around the prospect of surgery. Of not being able to book holidays and trips away for the family. Of not knowing whether those concert tickets we’ve bought are useable. Bad in that I recruited an assistant for the business mainly so that she could cover for me while I was out of action post-reconstructive surgery. And the longer things drag on, the higher the chance that she may not be there for me when I need her. 

But good, good in that the more time I have to absorb the information, the more convinced I am that surgery is the right pathway. The more I come across people who’ve walked the same path, who can encourage and inspire. 

MRI's, decisions, decisions.....

Another few steps down the road! 

July saw me travelling to Eastbourne for a breast MRI. My experience of being placed in a noisy plastic tube with a cannula in my arm was surprisingly fine! The radiologist was very reassuring throughout and I lay down and listened to Calvin Harris on some massive headphones. Singing along helped, especially when they pumped dye through the cannula and I thought my hand may have numbed out completely. 

I’d been told the MRI was a very noisy experience so I expected not to really hear the music - but apart from the occasional “pneumatic drill” type sound and lots of beeping I barely noticed. Maybe having 2 tiny children means I’m used to background noise….. Whatever, I can say that being placed face down on a table with lots of warm blankets over me nearly induced sleep. 

Thankfully the MRI was clear. 

August saw me back in Worthing Hospital to see Anna. Anna ran through the implications of having the BRCA1 gene once again and discussed my potential screening vs treatment pathways. By this point I had already come up with a plan in my head:

Firstly, surgery feels like the safest way to go. Yearly breast screening (via MRI or Mammogram) is available to BRCA1 carriers through the NHS however ovarian cancer has no effective screening in place. Ovarian cancer is often referred to as “the silent killer” as symptoms are hard to spot until it is too late and it the cancer has spread outside of the ovaries.

Removing the ovaries and fallopian tubes (salpingo-oopherectomy) is usually a minor keyhole surgery operation, and can also significantly reduce the risk of breast cancer. However, taking away the ovaries also results in full on menopause. And, should breast cancer ever occur, there would be no option of taking HRT to compensate for the immediate oestrogen withdrawal. 

Menopause at 34? Not something I fancy either! No more oestrogen can a massive impact on heart health, sexual pleasure, bone density and mental functioning. Yep, that sounds wonderful.

So, here’s the plan: breast surgery first. I will opt for a double mastectomy which will reduce my lifetime chance of contracting breast cancer from 70% to around 10%. I will opt for immediate reconstruction (I like my curves!). Mastectomy and reconstruction are more major surgeries but should mean HRT is safer when I come around to removing my ovaries and tubes.

Then once reconstruction is complete I will re-visit the salpingo-oopherectomy. Current evidence suggests that a BRCA1 carriers risk of ovarian cancer dramatically increases at 40, and removal should be happening a few years before this. I will want immediate HRT to curb any menopausal symptoms.

Anna seemed satisfied with my knowledge and so that’s the last appointment we have for the near future! 

Moving onto September (and post a very warm, sunny, fun and needed camping holiday to France), and my most recent appointment(s). Friday I went to the Royal Surrey County Hospital for a specialist “gene” clinic. Here I got to meet a breast surgeon, gynaecological-oncologist and breast care nurse all on the same afternoon to discuss treatment options. 

The team at the hospital were fantastic and helped ease the pain of a very intense afternoon. First, I met with the family history nurse, Susan. She was kind so of course I bawled my eyes out (usual for me, really, rather understandable). Then I moved onto the gynae-oncologist and bawled my eyes out again. She suggested the same treatment pathway to what I’d come up with which was really reassuring. Basically - leave the ovaries be for the next few years whilst the boobs get chopped, then come back in a few years time. She was very quick to reiterate that ovarian cancer is not a monster to mess with - and said the vast majority of her referrals are already Stage 3/Stage 4 cancer patients. Horrible. 

Then, a 3 hour wait for Tracey Irvine, the consultant breast surgeon. She’s a lady in demand! Meeting Tracey was an interesting experience - she’s very no nonsense and straightforward. And then, of course you have to strip down to your knickers while she gains intimate knowledge of your breasts and assesses your body for any excess skin/fat to use in the reconstruction process. I’m not sure what to say! Except that it’s an integral part of the process and it has to be done. Apparently there’s not enough excess skin/fat anywhere on me (except, maybe, the thighs - no revelation there) to completely reconstruct 2 breasts so implants are looking like the way to go. I don’t plan to put on weight just to rebuild my boobs - unless she explicitly advises it - I’ve lost just a small amount over the summer yet feel so much better for it. 

Friday night I made a more “public” announcement of what I’m going through (i.e. Facebook!). I’d told quite a few people already and was starting to lose track of who did and did not know! Doing this was interesting - although there was an overwhelming amount of support it did not bring joy. Facebook cannot replace those people in the real world who bring cake, cocktails and real laughter to life. I think also this - combined with the appointments - has eventually brought it all to life. I haven’t been living in denial but at the same time it all seemed a bit surreal.

I’m now exhausted. In so many ways. Tired of the journey already and the surgeries have not even begun! I don’t want to be the patient, I don’t want to be dependent on others, I don’t want to lose my boobs. I didn’t want to have to curb nursing around Ellie’s 3rd birthday. I certainly don’t want to lose my ovaries and face menopause and the thought of losing fertility is a mind-spinner for all ladies at some point! 

I’m having a real “don’t want to, don’t like this, get me out!” tantrum. Wouldn’t you?

Finding out ...

8 days since I found out I have a BRCA1 mutation…..

In most ways, nothing has changed. It’s been a lovely week. Sunshine, beach walks, swimming, laughter with the family. Sports day! 

And in other ways, it’s been weird, slightly disturbing, odd. Rather confused.

I found out in January there was a BRCA1 gene abnormality in my family (: http://en.wikipedia.org/wiki/BRCA_mutation). My dad was tested October time but he hadn’t mentioned it then - life was pretty stressful as was.

When dad gave me the letter from the genetics team in January, I was feeling pretty shocked. His words of caution early last year of “another one of your cousins has breast cancer, you should ask for screening” didn’t really phase me. Around 1 in 7 women get cancer at some point in life, so two cousins didn’t seem really indicative to my risk.  But, there it was in writing, a letter inviting me to genetic testing. A letter explaining that there was a recognised mutation to the BRCA1 gene in his family - which, unfortunately he had and therefore I had a 50% chance of having too. A few google searches told me that if I did share the same mutation my risk of breast and ovarian cancer were much higher than I thought. Individuals with a BRCA1 mutation are predicted to have a 5 times higher risk of breast cancer, and a risk of ovarian cancer 10-30 times normal.

Testing isn’t compulsory. I could have taken that letter and thrown it in the bin. No one would have chased me. 

But I chose to find out. Because in my mind, when you’re facing cancer, knowledge is power. Although it’s uncomfortable finding out that your risks are massively increased, you also open the door to a range of preventative options, or more regular screening. 

It took around 4 months to receive an appointment letter from the genetics team, and I then had an appointment scheduled for the end of May, just before my birthday. A 5 month wait in total - pretty mad. I had a couple of health scares during that time that thankfully amounted to nothing but I became uber aware of my body! 

The counselling appointment went smoothly. My genetic counsellor, Anna spent time running through my understanding of the testing, the possible outcomes etc. There was very little covered that I hadn’t had a chance to mull over and research in the 4 months prior! I had blood taken straight after, had a little emotional wobble, and then carried on life as usual again. 

Three weeks later, the phone call. Anna called at 1730 on a Monday evening. As soon as she called, I knew. Thankfully real life CRAP situations don’t call for the kind of X Factor 30 second pause situations. So there it was - I got the wrong side of the coin. I have a BRCA1 mutation. 

I let my husband and some close friends know immediately. I am so tremendously grateful for the support they gave and give. I have been showered with cake, flowers and kind words! 

I honestly don’t know what the next few years at least hold. I’m considering all options seriously right now. Emotionally, I’m mostly feeling extremely grateful - grateful to a cousin I’ve never met for pursuing the family genetics, grateful that I live in a country with a free health service and grateful preventative surgery is possible. Grateful for friends and for family. But sometimes, fear and sadness creeps in - fear that I’ve passed it on to our children, of possible surgery, of cancer, of ill health, of not being able to feed my youngest daughter to term. 

So, this is the beginning of this journey. I’m still me of course, but with added complexity. Sigh.