My personal journey started in September 2011 when I visited my gp to discuss contraceptive options available to me as I was told to avoid oestrogen due to the uncertainty around my genetic disposition to cancer.
The real journey commenced 10 years earlier when my precious mummy was diagnosed with breast cancer at the young age of 41. I remember distinctly my dad picking me up from a group exercise session at the local leisure centre and thinking, wait a minute where's my usual fri night 'mum taxi' it was then he told me that mum was ill. I was due to Go to a party that night and my parents made sure I went! I sat having my hair done with my childhood best friends (sisters who were our neighbours) and I remember crying for a while before telling them mum had cancer the hardest words to ever cross my mouth. They were and still are to this day the bestest friends (& future bridesmaids) anybody could ever wish for and I will be forever indebted to them for their time patience love and care during my journey from then to now and beyond .... Of that i am sure!
Many many sleepless nights followed as anyone who knew us understood how frightened we were to be facing an uncertain future. My mum fought hard she underwent a lumpectomy chemo & radiotherapy, but never faltered! I remember once my dad came to watch me at a hockey game and the Feeling that mum wasn't able to make it was so painful for both of us, yet she bounced back and I remember the following summer seeing her illegally standing on the inside of an athletics track screaming go nik with a chocolate star bar in her hand!! My pe teacher was a huge support and understood me and my situation and got me out of a few detentions during this time to 'play hockey', during a ski trip I had a huge migraine (something that featured regularly while Mum was ill) and I Remember after, she took me to a McDonald's and we chatted for
hours about how I felt - it was like a weight lifting off my shoulders. Mum was then whisked away to Get to my brothers football game .... Our mum was and still is our biggest mascot!!!
Shortly after my mum was given a clean bill of health she was called to see a genetics counsellor as the prevalence of breast & ovarian cancers in our family seemed to
be growing unfortunately mum had lost her mum, several auntys and cousins to the disease by this point. Mums youngest cousin being diagnosed at a scarily young age of 29. So the genetic counsellor came to our house, I remember making her a cup of tea so I could ear wig and
hang around, she drew a family tree as mum just about emptied the box of tissues revisiting everything was painful, and that was clear to see. Mum took the blood test along with 1 other Aunty who was also a breast cancer survivor this got the ball rolling something I would later be eternally grateful of. The results indicated that mum had a mutation of the brca1 gene this meant she had a significantly higher chance of getting breast or ovarian cancer and of course explained the prevalence amongst the women in our family, her 2 brothers also tested positive. Mum made the huge decision to have preventative surgery, something at that time which was relatively unheard of. She underwent a double mastectomy, later a hysterectomy and has since had to undergo further reconstructive surgery as the implants were not designed to be in place indefinitely and unfortunately experienced problems with the implants. There were several side effects a nasty infection and changes that happened to them over time and mum was left with a very faltered perception of herself which impacted hugely on her self confidence, but to everyone on the outside she is just an inspiration and a beautiful one at that! Tragically we lost my grandad very quickly (not surprisingly also to the disease that shadowed our lives for many years) it was a huge loss to our family but I stand by him as our angel from the day he left us to Join nana in heaven. Mum received a lot of support from the Coping With Cancer charity and as a family we are grateful for their determination and optimism in getting mum back to a good place! Unfortunately mums experience didn't end there, due to the early onset of the menopause, caused by the hysterectomy mum went on to develop osteoporosis but something she could combat with medication and a good healthy lifestyle. More recently mum has discovered she also has an under active thyroid so is also taking medication for this too.... She refers to herself as a hollow chemist minus the body parts plus the tablets!
In November 2011 I went along to the genetic counsellor with my brother at my side we discussed our options and as my brother was due to get married and start a family in
the coming months he decided he would rather just know... He had the test and it was negative - a huge relief. I then had the test in April 2012 but by this point was convinced I was carrying the gene I knew it was all In the toss of a coin but the closeness between mum & I meant that we knew deep down all along that my test result would be positive, which it was. I remember crying so hard It hurt
my chest. My boyfriend held me close and I just let it all out before heading to the pub for a large glass of wine!!! I remember being so fearful of telling my mum knowing she would feel so guilty and she was at this point stronger emotionally than she had been in years. Of course she gave me nothing but emotional and practical support and answered an uncountable number of questions I had. Initially I avoided the conversation and would pass it off saying 'what will be will be' not ready to make decisions about my future just yet.
I remember saying to people I'm not scared about getting cancer, being a positive and pro active person meant I knew I would act and avoid it before it got me, but I was scared about the future. I was forever running scenarios through my head planning operations around having time off work, having holidays, having babies having a future. My boyfriend was and still is the most patient understanding and caring person he took it all in his stride. Whenever anybody asked me how I was feeling about the impending operations I was generally strong and held It together, but if they mentioned how Steve or Mum was feeling I fell apart, I could deal with my own hurt but knowing I had inflicted pain into their lives and knowing how worried they both were for me was much much worse.
Just weeks after I had found out about the gene, my beautiful cousin took her own life after suffering from Mental health problems for years, our family was sent into a state of shock and this undoubtedly helped me to put things into perspective and focus on something and someone else.
We had a trip of a lifetime planned in Africa volunteering sight seeing and safari so I decided I would re visit my own Personal nightmare after this.
I attended an appointment with a consultant at glenfield hospital, my Boyfriend and future husband was where he would be for the next 9 months firmly by my side holding my hand. I am very fortunate that I Live in Leicester and a specialist breast care centre is a mere 15 minute drive from my house. The intention of
this appointment was not clear just an 'initial consultation' so I presumed a chat to discuss future options; at this time I suspected I would probably approach surgery around the age of 30. I was asked to wear a robe and blood pressure and blood tests taken, to which I was a little unnerved as I hadn't expected this. The consultant chatted to me & on examination found some
irregular tissue in my left breast ... Of course I was propelled into a state of fear and anxiety. I rang my dad who was obviously upset and concerned and angry! I couldn't tell my
Mum for several days somehow the reality of Mums experience was still too raw and I didn't want her to
be re-living all the fear but I did tell
her and she was, once again a huge support. I was sent for an ultra sound, biopsy and MRI. I remember getting special attention, the consultant made a special Effort to come and speak to me to explain things, the nurses are exceptional too so personable and I felt as though they too were with me
on my journey! Something
my mum reinforced too, they truly are wonderful women there. Sitting & waiting for tests and results in a waiting area where most people were double my age yet at less risk of breast cancer than me was terrifying. My mum and boyfriend came with me to appointments and were equally fearful, the reality of
seeing the irregular cells on the screen was equally terrifying. I didn't sleep and couldn't concentrate for
several weeks in the run up to
Christmas (usually my favourite time of the year). I had endless reassuring conversations with my friends whilst running and dining out and with a work friend (much more than a colleague) who was another source of reassurance and constant hugs! When I returned to the hospital for my results I felt sick and my tears were unstoppable, the results were clear - I had an Irregular cell type but it was not cancer - I cannot even begin to describe my utter relief. I remember my brother saying 'ugh thank god for that I can eat my breakfast now' at 14:00! Needless to say he was clearly worried too! At this same appointment my mind was decided - no more waiting... Get it done, book me in! I Told the consultant. We had future appointments in which I decided to have total double mastectomy including removal of my nipples and reconstruction, this would happen in 2 operations. The first would last around 5 hours and would remove all breast tissue & place a deflated implant under the chest muscle. I would then return every 1-2 weeks for these to be inflated with salene through a port. The second operation would then replace these temporary 'inflators' which enables the muscle to stretch with permanent implants... Simple apparently!
So many questions I had and concerns which were all irrelevant in
the grand scheme of things but which seemed important at the time,
'can I work? Can I drive? Can I exercise?'. I met several women
who had recently undergone the preventative double mastectomy, whom went onto to provide first hand advice & encouragement, they answered lots of questions and shared their journey and experiences.
I remember sitting down
with my work friend and telling my manager and other people we worked with this was realy realy hard and I would cry every time and ask people to be reassured that I'm not ill and that I will be ok and some be back!
I was invited to attend a cancer awareness workshop and it opened my eyes to being even more pro active so I began a healthy detox and my exercise regime ramped up a gear so by the time I was due to
have the operation I was the fittest I had ever been! I arrived at glenfield hospital on the 9th April 2013 for my first operation. I was truly petrified my whole body shook, I cried lots and felt very sick, I went for a short walk around the ward to try and calm down when a kind man came over to share his wife's experience and reassure me. The next hour was about to change me forever and I had no Idea how I would be feeling or looking. The anaesthetist asked if I would consent to trying a new pain management strategy where they would paralyse the nerve to
my chest wall presumably to
avoid any pain, I agreed.... So there I was a guinea pig and
would have my photo taken for their use with other patients.
I left my boyfriend and my mum and off they went to busy themselves to distract from their worries
and the fresh image of my tears and panic. I went into the anaesthetic room and a man and 4 others stood around me it took 35 minutes to calm me to the point of accepting the anaesthetic not because i was having doubts but because I was incredibly anxious about having anaesthetic for the first time. They were so patient and understanding and agreed to give me a little bit to help me relax but not knock me
out. I remember the anaesthetist asking me to describe why I was shaking I replied 'what if I don't wake up' he simply held my hand and replied we will look after you.
5.5 hours later I came into
the recovery ward I was high on
Morpheme and anaesthetic. I gave the staff a beaming smile and a double thumbs up which was an
expression of my relief in waking and being alive. Apparently, I
talked the poor nurse dry. I remember drinking a huge amount of
water and a little later they brought
my boyfriend down to walk alongside me back to the ward I
think because the nurse had enough of me! I wanted to eat and drink
and behave according to
the nurses advice. I
didn't sleep much not because of pain but because my head
was everywhere. I remember feeling very hypocritical as I lay
in a bed having had the opportunity to avoid the dastardly disease amongst a group of
women who's prognosis was somewhat different to my own. I looked down and saw nothing just bandages felt tip pens and the drains and had to remind myself this was very temporary but difficult to wake up with none the less! I went home that next day shaky and very emotional hanging onto my 2 bottles of blood draining from
underneath my chest. I had the
biggest and most unforgettable hugs that night accompanied by tears with mum dad boyfriend brother grand parents and of course my 2 bestest friends.
So my recovery from opno.1 began... Sleep... well that was virtually impossible to begin with I was happier alone cool and on the sofa really, but was pushed into the spare room as Stevey was so scared of catching the drains bless him! I used to sneak back into him
some nights for a much needed yet awkward cuddle I always have and always will hate being alone! He is so patient, understanding and truly wonderful! So I would catch up on sleep in the day usually 2 good naps in between the visitors! My knitting skills became perfected as I couldn't move easily so I just sat and knitted and there were relentless visits from my friend & co-knitter she along with mum and others would walk our puppy and clean and feed me but never got in the way, I was so grateful of all the help, support and company, I felt truly blessed. The blood was draining less and less and I became desperate to get the drains out they were such a constant reminder and visually so severe! Steve was very concise with his daily recording and reporting of the volumes to the nurses each morning. One day I remember over hearing a conversation and the comments 'tell him he can visit aunty Nik soon when she's better and ready for a hug' that broke my heart as I knew he was protecting me, as usually we would roll around on the floor laughing & playing! A few days after the op I was allowed to have the drains out but my mum warned me, its not nice she said... But by now I thought the hard bits over but I guess she knew more than anyone how low my pain threshold is and how much of a baby I can be!!! The drains came out with a wonderful trainee nurse who also took the time to show us some different 'softys' like chicken fillets to put inside a bra and I cried as it made me feel that little bit feminine for the first time since the operation. I still needed help with washing and brushing my hair and putting some clothes on but I wanted to stay on the cautious side as I was so determined not to be one of the 1/3 that get infection during these operations. Over the coming weeks I enjoyed more knitting, light walks and lots of visitors chats and tea in the garden as we had a beautiful summer! My dog kept me company and was a saviour but Stevey came home every lunch too so between friends and family I was rarely alone.
The inflations started a short while later, the nurse would locate the port and insert a needle (strange as I could not feel anything) and inflate the implants it was like a weekly boob job! I remember one occasion when a different nurse tried to perform the inflation but couldn't find the port and I bled somewhat I became hot and sweaty and got upset it was traumatic enough without feeling like that, so future inflations were carried out by the surgeon which put me much more at ease! The implants were like hard uneven boulders stuck on my chest very alien and uncomfortable but not designed for long term.
The second operation soon came around I was nervous but excited and ready to put an end to everything. I was shaky but a different anaesthetist and better expectation for what to expect after the op meant I behaved much better, needle in and the next minute the op was done! Initially I was swollen and bruised but being young fit and healthy meant I healed quickly! I was desperate for normality - my busy active life but I took my time! The surgeons were really pleased and I remember crying when the bandages were removed and I could see my new boobs for the first time! I felt so privileged to have been in the hands of such an experienced and talented surgeon! As I became friends with the permanent implants I had little problem with my back or sleep I just felt like me!! The implants were in the same bra size as before and I felt proud to wear my bikini!!! My friend took me to get some temporary stick on nipples too which was of course, quite comical and over the time they have found their way into some unfortunate places!
I went back to exercise and work and life resumed as normal. Shortly after, Stevey proposed during a trip to Rome and instantly my ordeal became a distant memory! I think my best friends are very lucky they got to choose my nipples and my wedding dress how many bridesmaids can say that?! When I catch somebody looking at me thinking where's her nipples or on a night out saying 'ur boobs look great they've got to be fake' I have a pinch of reality but just laugh it off it's natural inquisition and I don't blame people at all! At Xmas lots of old friends had a handful and we just made a joke of it!
I've since learnt to wear clothes with pride but still want to have some nipples tattooed before I get married... It just feels like the final jigsaw piece and cherry on the cake! Recently mum has had to have reconstructive surgery as her implant had ruptured and unfortunately has to have yet another op as they still aren't settled and right for her I wish in many ways she could have mine and gain some more confidence I hope I can continue to to be there for her as she has always been for me! I have spoken with several women to share my journey and experience and hope in some small way I have been able to help others. I love life always have and always will and treasure every moment, I'm sure the rocky road I've travelled has led me to this outlook on life ....
I am eternally grateful for health and happiness and undoubtedly owe that to my surgeon, Stevey, mum, extended family and friends they will never know how their help laughter support (wine) helped to heal me inside and out I love u all xxxxx