Back to Life, Back to Reality!

Today I am almost 7 weeks post op and, as of yesterday, I am free to live life as normal! I am finally allowed to pick up my son, drive and even do stomach exercises but, as I am already finding, the muscles will need some strengthening before these actions feel in any way 'normal'! I know that I have been very lucky to enjoy such a problem free recovery, although that has certainly been aided by the huge support I have received from family and friends.  The doctors have also confirmed that they found absolutely nothing of concern in the tissue they removed - the only thing of note being scar tissue from the previous operation - which must surely be the best possible starting point for any preventative surgery.

As I mentioned in my last post, it did take a few weeks for my physical strength and stamina to return. The first time I took the train into London for a follow up appointment early in December, I also made the trip into the West End to pick up a necklace that was being mended. Although I initially thought I felt strong enough, I quickly realised that I wasn't ready for such a trip at that stage and the next day was spent pretty much glued to the armchair.  With daily walks and increased activity, I have been able to build myself up again almost to pre-op strength physically (although I haven't yet tried any proper aerobic exercise!), but difficulty sleeping at night has definitely contributed towards the general tiredness which for me became the one main side effect of the surgery. Now that I am able to sleep in one position for a reasonable length of time without becoming uncomfortable, I have finally managed a few good nights' sleep and the mental fog is starting to clear, just in time for the return to work on Thursday!

With the benefit of hindsight, I am very glad to made the decision to have this operation this year. 22nd December marked 3 years since my first diagnosis and there are no signs of recurrence, meaning that I have not been fighting malignancy at the same time as recovering from major surgery. For other women I met along the way, the operation was just the first stage in a whole course of treatment, each stage no doubt increasing their physical and mental weakness. I was also able to prepare myself for the changes to the body, as well as the possible risks of surgery, in my own time, without any external pressures. Being fully in control of my own destiny (apart from whilst I was under anaesthetic of course!) has helped keep me strong and positive.  Obviously there have been difficult moments - and times at which I questioned whether I had done the right thing - but the body's ability to recover is simply remarkable and any moments of distress have passed very quickly.

Throughout the past 7 weeks, I have been conscious that my surgery was elective - my decision completely.  I was given the risk-reducing statistics, but in no way did the surgeons try to force my hand or even guide me in a particular direction. Furthermore, I wasn't ill, this was an entirely voluntary procedure which I chose to do. For this reason I have been bowled over by the messages of love and support, as well as the huge number of gifts, I have received:

• My work colleagues who have visited, corresponded and sent generous presents, whilst covering for me without complaint during one of the busiest periods of the year.
• My wonderful mother who has given up days of work and rearranged her life in order to take care of me and my son, no doubt exhausting herself in the process. 
• My father, who despite a very busy working life, drove up to London on a Sunday evening to spend a couple of hours by my bedside.
• My sister, who took time off work to look after my son while I was in the operation, surprised me by visiting the hospital and was always thinking of me, despite going through very exciting times professionally and personally.
• My fabulous friends who have texted, visited, taken days off work and in one case done emergency shopping errands and made an urgent detour to the hospital on a Saturday night when I had need of a friendly face.
• My husband who has been ever understanding and supportive, not complaining when the bed was full of extra pillows and always saying I looked wonderful (when I'm sure I must have looked dreadful at times). 
• My beautiful son who has made the recovery so much easier just by being here, giving me cuddles and flashing his cheeky smile.
• Even Facebook acquaintances who I really don't know well have taken the time and effort to send cards and even gifts.

I am hugely touched and will never forget the kind words and tremendous generosity I have felt. You are all amazing.

Many people have told me that my decision was brave and selfless, but I have to say that I do not really see it in those terms. Yes, it took some courage to put my body in the hands of the surgeons, but I trusted them implicitly - they have done this operation thousands of times before and can always correct anything that isn't quite right at a later date.  Of course I was conscious that my son's life in particular should not be affected any more than necessary by his mother's health issues, but in my view I was acting more selfishly than selflessly - I did this for me, to try to make sure I can continue to enjoy my life and my family for many more years to come.  We can all adapt to physical changes but no one can replace those precious moments of family life that we have been waiting so long to enjoy.

This is likely to be my final blog post, at least for this blog. The next stage of the reconstruction will happen in the next 6 months or so, but that is likely to be under local anaesthetic and day surgery, so will involve much less upheaval than the last 7 weeks. On Thursday I return to the world of work and things return to normal.  It has been really helpful for me to write these entries, if somewhat sporadically and I thank you all for taking the time to read them. I have always wanted to write, but I had never really found, or made, the time for it until now.  Perhaps this will encourage me to do more of it...New Year's Resolution maybe?!

Facing my new reality...

I cannot believe that it has been almost 2 weeks since the last post! In the words of my beloved husband, 'it's very tiring doing nothing'!

Of course I haven't been doing 'nothing' as such, but I have definitely been much less active than usual. My scars are healing well and, although a little sore at times, they are far less painful. I have been very lucky not to suffer any infections or other complications (as far as I am aware at least!).  As a result I am much more mobile and have been on a few walks and even to a christening on Sunday, though I need to remember that being able to potter around the house does not necessarily mean that I will easily be able to walk 3/4 mile into town! However, I do think it is important to test my limits and push myself a bit - both to ensure that my muscles keep working and to try to make sure that the eventual return to normal life/working/commuting etc is not too much of a shock when the time comes.

One of the most difficult aspects of this whole procedure for me was actually facing the reality of my 'new body'. Both the stomach scars and the new breasts are not properly visible to me without looking in the mirror, which means it is very easy for me to avoid looking at them. As the mirrors in the hospital showers were mainly at waist height, I did see the stomach scar quite early on, but it was not until I had been at home for a while that I had the courage to look at the breasts properly. Neither area has ever had much of an external dressing on, as they used internal stitching and glue/mesh (on the stomach) so, although early in the healing process, it is possible to imagine what everything will look like once the scar is less obvious and the bruising has died down. Although my breasts are smaller than previously, as expected, I am quite happy with the new shape and I am getting used to the lack of nipples (these will be created and areolae tattoed on at a later date). As the surgeons removed skin and fat from my stomach to create the new breasts, they have also created a new belly button which is higher and smaller than before, but again doesn't look unnatural. Finally, the stomach scar is very long but neat and once the mesh has come off (which looks a bit odd as it is covered in dark fluff from my jogging bottoms!), I think it will probably fade quite quickly. So all in all, I was pleasantly surprised by my reflection, when at last I managed to look!

It is also amazing how quickly everything becomes more comfortable. 2 weeks ago I remember sneezing would bring tears to my eyes - an incredible pain - now, it is just a slight pulling sensation, no more than a bit uncomfortable.  The same for laughing and coughing.  I am still quite numb around the breast area and below the stomach scar, which is rather odd - when I try to give my son a hug, it feels like there is plastic packaging between me and him, when in fact it is just me! I am told that it could take 3-4 months for the nerve endings to re-develop.

Talking about my son, it has been pretty hard for us to have a proper mother/son connection over the past 3 weeks. He is a pretty physical lad, and it is difficult for him to understand why Mummy cannot play 'tickles on the bed' or give him 'horsey' rides round the living room. To begin with, he ignored me a lot of the time, as I was so immobile and different to usual (and I had been away in hospital for 5 days). Gradually though he has become more used to the status quo and as I have become more mobile we have been able to play trains and puzzles like normal. On the way back from nursery the other day he said to his grandma 'Mummy's tummy getting better', so I think he probably does understand on some level. I do really miss being able to pick him up and give him more than a careful hug, but I have to keep reminding myself that he won't remember any of this when he is older (or even in 6 months time!) and enduring five or six weeks of fewer cuddles is nothing compared to the disruption a cancer recurrence would cause.

As a final note, I must say that my recovery would not have been so problem-free if I had not had such fantastic support from family and friends. My mum and husband, in particular, have been amazing - preparing meals, washing my hair, looking after my son, reassuring me in moments of panic (!) and generally allowing me time to rest and recuperate. I have also had countless bunches of flowers and boxes of chocolates from well-wishers and I have been bowled over by the number of messages and even visits from friends and relatives. I am a very lucky lady indeed!

How was it for me?

On Monday, day 5 after the operation, the doctors took out the last drain and immediately allowed me to go home. At the time it was a bit of a shock and I wasn't sure that I was ready, but in retrospect it was the right decision. It has been much easier to sleep at home, the food is a lot more appetising and I have less risk of infection.  My in laws have lent me a motorised chair which moves up and down at the touch of a button (just like those found in old people's homes...!) and I have been able to sit in the chair for the majority of each day - reading, sewing, watching box sets of The House of Eliott (one of my favourite drama series from the 1990s) and being waited on by my fantastic and long-suffering mother. The perfect recuperation.

About an hour prior to my discharge from hospital, a volunteer brandishing an IPad was sent to interview me on my experience of hospital.  Given how much press time is devoted to the NHS, both positive and negative, I thought it might be interesting to summarise here my thoughts on my (admittedly quite narrow) NHS experience. 

Prior to the operation, I have to admit that I was not particularly impressed with the administrative side of the hospitals involved. The plastics team, in particular, were very difficult to reach by telephone and if I had not been a pretty persistent caller, I have a feeling I would have become lost in the system and the estimated wait of 4-5 months would have been much longer than the actual 6.  Furthermore, with two surgical teams needing to co-ordinate to perform the operation, there was considerable confusion over which pre-assessment protocol was 'correct', with the two consultants having different views as to when the relevant blood tests should be carried out and how long before the operation I should stop taking Tamoxifen.  This confusion definitely increased my anxiety and apprehension at a time when I was already pretty anxious and apprehensive - and desperately trying to prepare myself for the weeks ahead.

All that said, once I arrived at the hospital at 7am on the day of the operation, I really could not fault the care and attention I received. Once the operation had finished, I spent 2.5 hours in recovery, being checked constantly, including once by the surgeons themselves.  When I asked to speak to my husband, the nurse brought me a phone, dialled the number and put the phone to my ear.  Having been transferred to the ward, I received at least hourly checks (including verifying the blood supply to the new breasts with a doppler each hour) and every request for attention was answered promptly and without any sense of annoyance or inconvenience. I was made to feel safe and secure, and as though my care - at least for that first night - was an absolute prority.

Throughout the rest of my 5 day stay, I remained thoroughly impressed with the quality of care provided and with the following especially:

• Each nurse on the ward was experienced and knowledgeable as to the ramifications of the type of surgery I had experienced.  Their clear knowledge and experience helped both to put me at ease and made me less afraid to ask questions than I might otherwise have been.
• Despite their huge competence, the nurses also knew their limits and were swift and happy to seek advice where necessary.
• The mastectomy and own tissue reconstruction was an operation that they see relatively often on the ward, as it is used for both cancer patients and those (like me) who are seeking to reduce their cancer risk.  They therefore had a protocol to follow, which they did, but without it feeling formulaic or as though they were 'going through the motions'.
• Perhaps most importantly, the nurses were all personable people who really listened and tried their very best to alleviate any patient's concerns, despite being on their feet practically constantly for 12 hours at a time. As it is a teaching hospital, the nurses were often accompanied by students and it was clear that they really took time and effort to explain each procedure to the students and even let them practise certain techniques under close supervision.  This in turn meant that the students themselves seemed to find their experience rewarding and gave their all to every mundane task, such as washing patients' hair or serving food.

Overall I would say that this hospital stay was a very positive experience - much more so than I might have expected following the administrative confusion beforehand.  For me, it definitely highlighted what a vocation nursing is.  They really do make a difference to people's lives - how many of us can really say that about our careers?!

The recovery begins..

After a pretty horrendous night sleep on Tuesday, the operation went ahead as planned on Wednesday.  It was all a bit of a rush after we got there at 7am with interviews from the surgeons, anaesthetist, nursing and research teams within the space of less than an hour. Then I was immediately wheeled off to the anaesthetics room and I don't remember much else until I woke up in recovery 8.5 hours later.

The first night was difficult, with lines and tubes everywhere (including oxygen tubes up my nose) and hourly check ups by the nurses. I did manage to sleep a bit though and, as long as I didn't try to move, the pain was manageable. The next morning, after having been checked by the doctors, out came the oxygen, self - administered pain pump and arterial line. And - I was finally allowed to eat something after 36 hours! 

I started out with four drains - two in the breasts and two in the  tummy - and over 3 days they have gradually been removed so I 

am left with just one in my stomach.  The nurses did encourage me to try to get out of bed and sit in a chair on Thursday but both times I had a faint spell and had to get into bed pretty quick with some oxygen. Clearly being vertical was a little too much for my body after over 24 hours horizontal!

On Friday however I managed quite a few walks to the bathroom and back by the end of the day and with only one drain left mobility was a bit easier.  I do have to walk around hunched over (to protect my stomach) so do look a little weird but I am getting a little straighter each time. Today I even managed a shower (seated, with assistance...) which made me (and my hair in particular) feel much better and apart from a couple of episodes of unexplained tachycardia today I have been steadily improving.

I haven't felt up to many visitors but it has been wonderful to see  my wonderful mum, husband, and sister, as well as a very close friend. It has been fantastic to see them and hear snippets from the outside world from them and via social media! I have had such fantastic support and really could not have done this without it.   I always knew that recovery would be slow and tough, but nothing can really prepare you for the enormity of it all.

Less than 12 hours to go...

So, here we are, the day before the big operation.

I have been through the full range of emotions in the past couple of weeks, to be honest, but still feel that, all things considered, I have made the right decision.  Having been waiting so long, I just want to be out of the other side now, where I know longer have the prospect of an 8.5 hr operation hanging over my head.  Over the past week, I have finished up matters at work for a while and organised a 3rd birthday party for my son; both have gone pretty smoothly, so all remains is to get through the next few days in one piece!

 We came into London this evening and had planned to stay in the hospital accommodation but when we got there we found a room no better than low grade student digs, with a broken shower and phone! My heart sank, as I had been hoping for some comfort and at least a good wash before an early start tomorrow. My wonderful husband immediately got on the phone to the site manager who agreed that we could have a full refund, so off we went to the 4 star hotel across the road where we managed to get a room for two nights, costing not a great deal more than the hospital digs.  A delicious French meal later and we are both feeling considerably more relaxed, although finding topics of conversation over dinner that did not involve operations or hospitals was a little difficult!

It was really hard to leave my little boy this evening, but he had no idea what was going on - perhaps another good reason for doing it while he is young.  He will be perfectly looked after by his grandma, daddy and aunty and I have no worries at all in that regard, though I will miss him terribly. I have to keep remembering that I am doing this to try to make sure that we can both continue to enjoy his childhood with the minimum of worries.

I am prepared for pain, discomfort and all the potential problems associated with recovery from major surgery. If I can get through this without major complications or setbacks, that will be all I can hope for.  I have had so many messages of support from family and friends today - I am very lucky indeed to have such wonderful people fighting my cause.  It is true that it is when the going gets tough that you realise who your real friends are - and I am extremely fortunate to have more than my fair share.  If any of you are reading this - and you know who you are - THANK YOU.

What do you see when you look in the mirror?

This was the question put to all the female interviewees at a recent 'Ladies Who Impress' event I attended. It was really interesting to see all three of these successful, confident women struggle to provide an answer to this apparently simple question and to me it demonstrated what a complex relationship most women have with what is commonly called their 'body image'.  What we want to see and what we do see are very rarely reconcilable and this can lead to very negative and damaging emotions.  Why do we have such difficulty accepting who we are?

In the introductory chapter to her very interesting book 'The Ministry of Thin', Emma Woolf, herself  recovering anorexic, cites a US study from 2011 which found that 1 in 6 women would choose to be blind than obese, whereas others would prefer herpes or alcoholism to being overweight.  In the UK, you only have to open a tabloid newspaper or gossip magazine to find an article focusing on a celebrity's weight gain or loss, featured as headline news. The obsession is universal, it appears, but why?

The media definitely has something to do with it, with the constant portrayal of slim, perfectly coiffed and made up celebrities. However, it is clear that those in the public eye also feel the pressure to look "good". It is rare to see a female actress, musician or model anything more than a size 10 (though there are some notable exceptions, whose size is never without media comment) and it seems all too common for young female celebrities in particular to seek to alter or cover up their natural appearance in many different ways; hair extensions and highlights, fake tan, false eyelashes, heavy make up and even breast implants have become the norm. Worrying numbers of teenage girls now think it necessary to employ the same techniques themselves on a regular basis to keep up with their style icons.

Even if you don't go to these lengths, it is difficult to find anyone who doesn't have at least one part of their body that they would desperately like to change (or, usually, reduce in size). I recall a recent skincare commercial which asked women to name the favourite part of their own body; not one had a ready answer. This physical dissatisfaction leads to an almost obsession with analysing everything that passes our lips.  I cannot remember a day when I didn't have at least two conversations with other women about "being good" in the face of gastronomic temptations, berating themselves for even considering indulging in chocolate or cake (but in the end doing so anyway and entering into a spiral of guilt as a result).  Why shouldn't we treat ourselves to a little of what we fancy ever so often? Would we not be a little bit happier? We might even stop at one slice instead of writing the day off as bad'un and consuming the rest of the cake, whilst being simultaneously consumed by guilt...

On the other side of the body image coin, Breast Cancer Care have recently released a video on the subject of Body Image, featuring a number of incredibly brave women who have undergone major breast surgery following cancer treatment, but who all seem to have retained (or perhaps regained) confidence and pride in the bodies they have been left with.  Faced with their own mortality, the ease with which these women appear to be accepting their new 'normal' is humbling and extremely moving.  It is of course absolutely true that you only appreciate the value of what you have when you lose it, or at least part of it.  But it is of course also true that we shouldn't have to wait for serious health problems before we discover our body confidence.

So, how has cancer affected my body image? To be honest, although I am proud of my body's resilience in the face of adversity, I cannot (unfortunately) place myself in the same confidence category as those wonderful women in the Breast Cancer Care video.  Having just experienced both childbirth and post partum complications, my body already felt so far removed from 'normal' so as to be unrecognisable. To then be told that I had cancer felt almost like a parallel reality at first and it was only when I had finished the treatment that the enormity of the experience really hit me. Although my breasts are still almost all my own tissue, with a little bit missing, they just do not feel like part of me.  This feeling of detachment isn't helped by the rest of my body all being that little bit larger than pre-pregnancy silhouette; a result of a combination of hormone therapy, not enough exercise and perhaps a few too many cupcakes...!

Put simply, when I look in the mirror, I don't see me.  For this reason, the prospect of reconstructive surgery doesn't scare me.  I know I can and I will adjust to the new body, whether it takes weeks, months or years.

I have a date!

So, the inaugural blog post. This is a little scary - putting information out into the world with no idea who may read it!

As I explained in the 'About Me' section, I made the decision a few months ago to undergo a double mastectomy and reconstruction and I now have a date for the operation in mid November. This is a purely preventative measure, which will reduce significantly the risk of a new tumour developing in either of my breasts later in life. For various reasons, the doctors do not advise implants in my case, so once the breast tissue has been removed, new breasts will be reconstructed by the plastic surgeons using tissue from my stomach. More scars, a more difficult recovery, but hey - a tummy tuck! Every cloud has a silver lining and - as someone who never really lost the baby weight and perhaps tends to over-indulge in the never-ending supply of birthday cakes in the office (whilst under-indulging in exercise) - this idea is not without its appeal.  

On a more serious note, I am all to aware that I have - unilaterally and voluntarily - chosen to have major surgery. An operation lasting between 8-10 hours, a week's stay in hospital and at least 6-8 weeks recovery. This is not a decision to be taken lightly. It is certainly true that it is an emotive subject, as demonstrated by the recent media coverage of Angelina Jolie's similar operation.  I have seen several comments on social media, mainly by holistic beauty practitioners, expressing huge anger about Angelina's decision to 'maim' herself, claiming that there was no scientific justification for such a step and that it would encourage others to do the same - thereby 'destroying' the bodies that nature gave them.  For others I have met, this kind of a decision is a 'no-brainer'; if there is a way of significantly reducing someone's chances of a potentially life-threatening illness, then why wouldn't you grab it with both hands?

I agree that Angelina's revelation is likely to encourage people to think about preventative surgery (and possibly lead them to request it when there is no real need - see Professor Mokbel's comments in the Evening Standard a few days ago), but it also gives women with a genetic predisposition to breast cancer who are being offered surgery, some comfort that it won't necessarily mean a radically altered physical appearance, as well as potentially giving them that greater peace of mind they crave. Angelina is a beautiful woman who relies on her appearance to further her career; the fact that she was prepared to have her breasts removed entirely and reconstructed demonstrates, in my view, both her sensible view of her own reality and her confidence in the medical profession.

For me, it is simply a matter of trying to take control of my own destiny. Even though all my screening since the cancer has been clear, there is still a small black cloud of anxiety following me around, leading to thoughts such as 'What if it comes back?' and 'I won't be so lucky next time'.  Whilst not completely obliterating the risk, this operation will reduce my risk of a new cancer by 90% and, given that the doctors estimate my chance of recurrence at 60% without the surgery, the numbers speak for themselves.  On a less scientific note, I am fairly young, with what I hope will be a long and happy life in front of me. I have a husband who I love dearly and a son who is my greatest joy. I want to be around to watch my son grow up, relishing in each stage of his development and showing him how wonderful the world is - in short, I want to be his mother. I have a list of places I want to visit, restaurants I want to try, goals I want to achieve.  I don't want to spend time worrying about the future, or in the worst case scenario dealing with cancer again (and I certainly wouldn't get away so lightly next time).

The decision wasn't easy, as a major operation is never an attractive prospect, but now I feel sure it is the right route for me and I am lucky to have the unflinching support of my family and friends behind me every step of the way. Watch this space!