So after making the decision to have a preventative double mastectomy due to carrying the BRCA1 mutation the time had come, at the weekend I was at the races with my friends, a few days later I was to have my breasts removed. I did not want to die of breast cancer considering my risk was about 85%. I have watched cancer destroy my family and I needed to put a stop to it
That morning my alarm went off at six, I had to be on the ward for seven, we set off in the car, it was cold, I felt sick, I had a bag containing lots of bits and my dressing gown to walk down to the operating theatre. My boyfriend and friends mum sat patiently with me in the bay. The smell of coffee mixed with the height of cleaning fluids made my stomach churn. We played cards and laughed and joked but nothing took away the thought that in the next coming hours a knife would be cutting through my chest taking my breasts off. The surgeon came in, sharpie pen in hand to draw all over me, I found this part of the morning quite funny being surrounded by a team of doctors gawping at me drawing everywhere. There was nothing I could do about the situation so I just started to try and relax, I was very lucky to be in this preventative position as opposed to having breast cancer. I wrote a note in my phone for my boyfriend incase I didn't wake up.....
The nurse popped her head through the curtain just as I was about to win the game of cards! "Are you ready Charlotte?" she kindly asked, so off I went wandering down to theatre in my gown holding my pillow, I felt like a little orphan! I walked down to theatre with a set of boobs that have been a part of me for 26 years, I was to wake up without them.
I went in at about 11.30 and didn't appear back on the ward until about 5.30. The pain when I woke up was like an elephant was sat on my chest, it was horrible. My immediate reaction was to strip off to see what an earth as down there! All I could see was mounds of medical tape and a nurse urging me to cover myself up!
I went back to the ward where friends and family kindly awaited me with worried looked on there face. I was fine, all went well! I stayed in hospital for two nights, I started to vomit which I assume was due to the cocktail of meds I was on but no biggie. Getting around the hospital was a real pain I couldn't even brush my teeth or go to the toilet on my own. I refused a bed pan as I was not about to wee in a bowl with someone watching me. I also became really constipated due to all the strong opiate based pain killers which led to me needing an enema. This of course I administered myself!
The drive home was a tad bumpy, try take the smoothest route, put a pillow in front of you too for the belt to cross over. It is really useful to have somebody at home who can help you. I am so lucky to have friends who have helped look after me in such an amazing way to help me recover.
Getting up out of chairs and bed is very difficult. Obviously the hospital bed rises so that helps a lot. My friends had one of these "old people" chairs in the cellar which was absolutely fantastic it put no stress on me getting up at all, and reclined right back for my afternoon snooze!!
V pillows are also very comfy, not only can you use it while sitting in a chair you can also manipulate its position when you sleep taking the pressure off certain areas like the drain port.
Get used to spending a lot of time in your pyjamas, lots of pyjamas/comfy clothes are needed!! Tops can't be too tight around the neck and must be stretchy on the arms as arm mobility is very limited at first.
It is important to have plenty of rest when recovering from such major surgery and it is lovely to spend time with the ones you love. However you mustn't let yourself get tired out whilst entertaining people. Do not be surprised if you slip off into a snooze during various parts of the day, that is quite normal!
Usually you/ the district nurse will empty the drains in the morning and record the output. You are told what to expect to come out of the drains. The nurses before you are discharged show you how to empty them properly, so don't worry about that.
My drains were in for 12 days which is a but of a pain. The hospital don't readily provide patients anything to carry them in. So when recovering I started thinking about doing something to help other women. I have devised "Drain Dollies" these are pretty surgical drain bags so women can carry out everyday tasks with ease, a portion of the sale of each bag goes to my chosen breast cancer charity. Check them out here:
Once you have recorded the output of each drain on a piece of paper they can be emptied. I emptied mine into the toilet. I was worried about some white bits in the tubes which the nurses informed me were fatty globules. The specialist nurses are fantastic, always on the other end of the phone if you have any concerns or to simply check your ok. As time passes output will decrease and they will be taken out. You do not want to rush the drains to come out as you may then end up with pockets of fluid building up inside the tissues (serums)
Washing and dressing
With drains and dressings I found it best with the help of someone else initially to have a wash in front of the sink with warm water, soap and a flannel. Do not push yourself when washing, a wash by the sink is quite adequate when you're in pain. You are not going to the ball!
Another way to wash is a shallow bath where the water doesn't reach your drain ports. I tended not to do this because I found it painful getting in and out of the bath and it was also too tempting to just lie back and relax, which you obviously cannot do.
Dry shampoo played a heavy part in the hair regime and when it needed a wash I sat on a stool in the shower. A friend wrapped my chest in cling film and then a towel on top of this proved a good waterproof barrier,with a good old washing peg to fasten. It is amazing how much simply washing your hair makes you feel better, you obviously cannot dry it yourself due to the arm movement. The physio told me to not lift anything heavier than a bag of sugar, so no housework, damn!
Sleeping for me is proving very difficult as I am a front sleeper. Obviously the only position to lie at the moment is on my back. If you have a partner it is a good idea to barricade yourself in! Put a row of pillows down the middle of the bed to protect yourself from that flying arm in the middle of the night! I am hoping it won't be long before I can sleep on my front or even my side. Last night I got to sleep at 4.30am and woke up at 6.30am! I am pooped!!
Bra or no bra?
For the first two days I didn't wear anything, I then started to wear a post surgical bra from M&S which cost £18 but they take the vat off post mastectomy bras which is a nice touch so £15. My breasts were taped up for 12 days so I didn't get to see them at all and the tape acted like a bra.
It is a good idea and advised at the hospital to have some sort of support , no wiring as this is often where the incision is made. I also bought a front fastening bra, this was less comfy in the end but the front fastening is ideal because of your limited movement.
Exercises
You will be seen by a physio or given an exercise sheet post op....
Obviously with the pain you tend to tense up and restrict your movement so as not to hurt yourself. The exercises are very clear and specific to your stage of recovery. When I saw the physio on day six she told me to let my shoulders go, I developed right shoulder pain and this was because I was walking around all tensed up. This is perfectly normal because its not everyday you wander around with two bags of blood, so you may find you tense up due to being cautious with your drains. This is another reason why I think Drain Dollies are brilliant as they allow you to assume a normal posture.
The best time to do exercises is when visitors are around, get them involved!
Six days after surgery I had a dressing check and physio appointment. Here the nurses check the dressings are ok, any signs of infection, how the drains are doing and how you generally are in yourself. They also reassured me the operation went to plan, as the only time I saw the surgeons was when I was in recovery a bit out of it. An appointment was then made to see the surgeon and for drain removal the following week. At this appointment the nurse said to me the shape is looking good but remember Charlotte, They are not twins they are sisters! Hence the name of my blog.
Above is a photo of my surgeon. I don't think I would of managed this journey so well without his help and kind approach. As time has gone on things have gradually improved. My boobs still feel a bit alien to me, and they are cold. I can feel thick mental like stitches under my skin which go right the way across almost like chicken wire. All this is mind I don't care, I'm just so lucky I've been given this chance to reduce my breast cancer risk. Hopefully by making my journey known it will make other girls feel at ease with the process. Everyones journey is different but the aim is still the same to give the gift of life.
This is a piece on BRCA and preventative surgery. It features myself and my surgeon Mr Murphy
The whole ordeal feels a blur to me now and its in the past, it was just a couple of months of a bumpy ride and now I'm back on track. Im back on track not just with a much lower risk of breast cancer but with a better outlook on life. I have realised what matters in life and what really doesn't. Things like this really put life into perspective.
My blog can be found at https://theyarenottwinstheyaresisters.wordpress.com