Sarah Koster

Becoming a BRCA 1 Previvor

 

“It was important to me to be able to tell my story and raise awareness of the BRCA gene and my decision making process in choosing to have preventative surgery.

However, I find myself 10 days post op, reflecting on the reality of having done it and being on the other side of this part of my journey…. and I feel compelled to write! Not only as a personal reflection, to update friends on my progress, but also in the hope my experience will help others planning on or going through a similar journey.

 

The days leading up to surgery

As I explained in my first blog, my decision to go ahead with a preventative double mastectomy was fairly clear cut for me.

This has meant I have been positive about my choice and therefore whenever I started to get anxious about the impending date I would remind myself of why I was doing it and that calmed me.

I have never had a major operation before or a general anaesthetic and my biggest fear was being ‘put under’. Where some may worry about waking up during an operation, my worry was never waking up at all! This stems from my need to be in control (a big part of me deciding to have the surgery) so being put to sleep I was definitely not comfortable with.

 

I kept extremely busy the week before my surgery, finishing up handing over at work for my time off and spending quality time with my son. Distraction also came in the form of my husband on a work trip and a colleague leaving at work so I didn’t have time to over think it. I had one “wobble” in Primark (of all places!) where I was trying to buy some post op easy to get on shirts, pjs and bras! I looked at the bras completely overwhelmed by what I would need and started to have a mild panic attack. This was when my incredible BRCA sisters (a group of girls I have met who are all on similar journeys with the BRCA gene) came to their own in advising me on what I needed. And a phone call to my mum — who told me to leave the shop! I ended up in M&S with a member of staff who helped me to get what I needed from their great range of mastectomy bras!

 

On the Sunday afternoon before my surgery the following Tuesday I had a little afternoon tea to say farewell to my boobs! This was really just an excuse to get all my amazing girlfriends together, a massive distraction and raise some money and awareness of BRCA. I asked people to bring a ‘boobie themed’ cake and wow! The effort was outstanding. I have never seen/eaten so much cake in my life and with some organised fun such as “guess the celebs boobs” it was a really fun ‘Boob Voyage’ party!

The cards, hugs, recovery hampers, flowers and words of support meant the world to me and I felt stronger than ever and ready for surgery.

 

Surgery day!

I arrived at the Marsden for 10am after an emotional goodbye to my son and parents. I’m not going to lie, I was pretty nervous. All this thinking, planning and talking and it was actually happening. Luckily a mere 20mins after arriving, I was being prepped for surgery as they were ready for me early. Although it all felt a bit fast, this was probably a blessing in disguise as I didn’t have all day to sit around waiting and getting more nervous. It all now seems a blur of having checks, putting on the gown and sexy socks, and having my chest drawn all over like a complicated architects plan!

 

Nervous smiles all ready for surgery

Before I knew it I was walking down to theatre, husband by my side. The kind nurse let him come into the room in front of the double theatre doors as I was so nervous. I remember telling the anaesthetist how old my son was and then…. ZZzZzZ

Next thing I know, I’m awake! I asked the nurse where my husband was, she told me I was in recovery and he was waiting on the ward. I then proceeded to let her know I was desperate for a wee and then after that I would like some tea. Priorities!!

 

Returning to the ward after surgery

Although quite sufficiently drugged up I felt pretty good! There was an amazing relief it was over and I had done it. I could straight away do so much more than I thought I would be able too. I had more movement in my arms and could get in and out of bed with only little support and walk around unaided. I also had the best tea and toast of my life! The nurses on the ward were lovely and no one could do enough to help. When my husband left for the night I was exhausted and ready for a drug filled sleep. Well… little did I know that apparently and ironically one side effect for some people after an anaesthetic is insomnia!! I was up most of the night and in between toilet trips and needing water and my mind not switching off I hardly slept.

 

Discharge day!

I had been told that I would be going home the next day. It was always the plan but I guess there was a part of me that just assumed I would need to stay longer after such an operation. I’d certainly packed for a few days! But by 8am the consultant had visited, checked me and updated me on the operation, which by the way went well with no complications. The Physio’s came next to run through my exercises, nurses went through care of bandages and drains and medication was ordered. At midday, I was dressed in my fancy pjs and my drain dollies (special bags for the drains) A lovely surprise visit from a friend having some treatment at the Marsden on the way out and I was literally on the road to recovery.

 

Being a good patient

It is great to be home, I sleep well here and have all my creature comforts. I Have found my free mastectomy pillows (from https://www.facebook.com/Jensfriendsmastectomypillow/) so useful in getting comfortable at night and a necessity in the car travelling for the seat belt to go over. My husband took the first week off work and my son stayed at his Nanny and Grandpa’s so I had good care and no excuse not to rest in the first few days. The pain is manageable with the medication and I’m getting used to the constant feeling of a heard of elephants stamping on my chest. Now it’s more like the elephants are just lying there and they’ve lost a few pounds.

 

I had my drains removed on the Friday just 2 days after surgery, which was a really good sign that things were healing well and gave me a lot more mobility in my arms and general comfort. I also didn’t worry about dragging them around with me, as I may have stepped on 1 tube and detached it from the bottle the day after I got home — oops!

 

My son returned home towards the end of the week, and we are keeping his routine now as close to normal as possible. He is out most days of the week at grandparents or nursery and my husband is doing all drop offs, pick ups, mornings and bedtimes. He doesn’t understand why, but he is getting used to the fact that mummy isn’t lifting him up, cuddling him or doing the primary care stuff. He’s being amazing and adjusting well, helped by the fact that when I have energy I am playing with him and being in the same room as him, just not on my own. I thought it would be really difficult to be around him and not be able to do much (it is tough emotionally) but seeing him and hearing him laughing and playing while I’m resting is great comfort and just a constant reminder when I’m in pain why I did what i did, for him. So, so far so good…I will not be able to lift his weight for at least another 4weeks.

 

The reconstruction

My new Foobs (Fake boobs) are bandaged up with a sports bra on top and apart from looking down and seeing they are significantly smaller!! I hadn’t seen or really thought about much more to do with them specifically. Until today. Today I had my first check up appointment post op with the consultant.

 

Firstly, the consultant is happy with my progress so far. They are bruised and the scars are healing as expected, not pretty, but all normal for this stage. I have had most of the bandaging removed and now just have minimal bandages over the incisions. I will be going back in a week for another check up.

 

Secondly, and most importantly for me, the breast tissue that was removed was all tested and and has come back all clear. This is such a relief as this was a preventative surgery and what I was hoping for, however if early cells had been found I would be needing treatment.

“So do i like my Foobs?!” That’s what I’ve been quite rightly asked by many friends and weirdly at the moment, I just can’t answer it. I still feel really detached from them, quite alien like. I can appreciate that considering it’s only 10days on, from what I’ve now seen, they look good. I’m not unhappy with them, but I don’t feel happy either. I guess this will come with more healing and time.

 

Support

Yes I’m positive, yes I feel Lucky to have the choice to take control but mostly I’ve been ‘brave’ and got through this because of my amazing support network.

I have had messages, calls, cards and visitors everyday since the surgery. It’s this that keeps me strong. From a friend washing and drying my hair to another insisting she gives me a foot massage and pedicure, to family providing childcare and support to my husband, countless dinners and lunches provided and friends laying next to me while I sleep and watching series after series of tv shows together.

I have found comfort, advice and support in reading and speaking to others on similar journeys and I hope I can provide the same through sharing my experiences.

 

Final thoughts

I have no regrets. I’ve had good days and tougher days. It’s been overwhelming and emotional and it’s still very much the beginning of my journey with this. However, all in all it’s been a positive experience. I can already do so much more than I thought I would be able to do independently, the pain is manageable and the Royal Marsden’s care and genius ‘ness’ is outstanding. I will keep resting and listening to what my body needs to recover so I can get back to normal life and give my son the biggest squeeze of his life!”