Featured

The Mastectomy Diary

I’m going to digress from my usual blogging about natural living today and report about my recent stay in hospital for a bilateral mastectomy and diep reconstruction.

My story begins two and a half years ago when, following my mum’s diagnoses with what would be terminal ovarian cancer I found that she was a carrier for a defective brca 1 gene.

The brca gene is usually a tumour suppressor but when defective gives women an around 80% chance of breast cancer and 50% chance of ovarian cancer.  My family history meant I could have the test on the ‘NHS.  I decided to do this: for me it was no big decision, I am a believer in knowledge so I went along to Guys Hospital for genetic counselling and testing.  Two weeks later I received a personalised letter confirming I was indeed in possession of a defective brca 1 gene.

Never having really been ill, and obviously feeling fine I found it a strange experience to suddenly be thrust into a medicalised system of yearly MRI scans and blood tests.  I attended a brca awareness day at Guys and listened to the various options available to me and then went home and continued with my life.

In that time I lost my mum, started studying counselling and generally developed a ‘live life to the full’ attitude.  I don’t recall ever making a decision to have a mastectomy: it was just something I kind of drifted towards.  I did waiver from this at points, but, for me, I felt it was best for my family.  Every time I would hear of anyone suffering or dying of breast cancer I felt a responsibility to take the opportunity I had, not given to many, to take control of my health and save my children from the ordeal of a sick mum.  The question then was when.  I went for June as it gave me the summer to recover, in between courses.

I’m not a very vein person, but I will be honest and say that , ironically, the part of me I’ve probably been most proud of has been my boobs. I’ve always liked the shape and size (34D).  Before the operation I had photos taken by my friend Kirsty (http://www.photographybykirsty.co.uk/) which I’ll put up when they are ready.  I rationalised that they had had their use: I’d breast fed and my youthful wonder-bra days seemed over.  All the friends and family I spoke to, including my husband were eager I put my health first.

What makes the decision easier is that the team at Guys and St Thomas’ really do treat you as an individual and so you can  make your decision in your own way and reassure you that if you are unhappy with the finished result they will make changes until you are.

What does take more getting used to is standing around wearing just knickers while the doctors examine and advise on options in accordance with your physique.  Still, I suppose it is good practice for what comes later!

I decided on a diep flap reconstruction.  This basically means the surgeon takes skin, fat, and muscle (a flap) from another part of your body , in my case the stomach, and made it into a breast shape. The flap needs a good blood supply or the tissue will die so the surgeon cut the blood vessels and reconnected them to blood vessels in the chest wall.  My original nipples were kept.

I went into St Thomas hospital at 7am on 27th June 2017.  I had an 8 hour operation led by two teams: first the breast team and then the plastics team.

I woke up in the recovery room where a doctor was checking my new breasts. I was instantly relieved to see that they looked normal – lovely and round! On the side of each are two scars with thinner skin, and every hour here-on-in someone would check the vain was working with a doppler.  I also won’t deny that I had a quick smile upon seeing my newly flat stomach.

The night was then spent with my lovely nurse checking my blood pressure and the breasts every hour.  I was in no pain at all, although I could have done without the (compulsory) heated blanket.  I also must comment on my lovely hospital room, over looking Big Ben and The London Eye.

The next day was another story.  I was given the task of getting from the bed to the chair, along with my four drains.  A task which proved beyond me, on the first attempt as I became nauseous and proceeded to be sick.  Every movement also caused horrific pain along my stomach wound, which is more or less the length of my stomach.  The good news is that by the next day I was able to walk to the bathroom for a shower, albeit bent over.

I’m home now, it’s 7 days post-op.  I need to swear a sports bra all day and night and in the shower.  I cannot bath or wear deodorant and I’ve yet to walk further than the street alone.  The last drain came out yesterday.  I’m just about walking upright.  Apart from this I feel great.  I honestly say I’ve had not one moment of regret yet.  The gauze tape remains on my scars.  The stomach scar does not bother me.  It will be covered by clothing and ironically I think, moving forward, I’ll be confident in a bikini as my stomach is so much flatter than before and the scar will be hidden!  I love the shape of my boobs, and do not feel as though they are not mine.  In a few months later I can have day surgery to tidy up the scars and can have further tissue put in if I want a bigger size.  I’m undecided because I reckon they are a C at present so will see how I feel when the swelling goes down.

There is not a single time in the process – from the test to when I left hospital that I have experienced anything less than great treatment from the NHS.  I am aware in the US I would have been at the mercy of my insurance company and that my decision may have been influenced by my policy options.  The operation would cost somewhere in the region of $200,000 there.  I feel so grateful to have had this choice and to now be able to live without the shadow of breast cancer over me.  In the future I will decide about having a hysterectomy to eliminate my ovarian cancer risk too, but I will worry about that in about a decade (I’m 37).

I also want to say how lovely it was to be able to donate my discarded tissue and skin to further research and to take part in medical trials.  It helped my give back to something to the NHS and medical research communities.

So that’s it.  I’ll put up some pictures (clothed!!) in a few weeks.  I just wanted to tell my story and thank everyone involved.  Now to continue to live

Kelly

x

 

The Mastectomy Diary Part 2: 6 weeks on

So I promised pictures, and here they are.  A few days before and today, 6 weeks on.

Picture below taken by fabulous Kirsty at Photography by Kirsty (http://www.photographybykirsty.co.uk/)

K-1026

20751190_10159243423785066_1633009020_n

 

 

I would never have put up pictures like this in public a few months ago, but having been undressed for so many people it does not feel like such a big deal now.  Also having put my body through so much I have a different relationship with it now and feel like I want to honour it.

To some extent today is the day my life returns to normal. I can start wearing deodorant at last and when I can bin the sports bras.  Today I headed to Boux Avenue and got measured and bought some proper underwear.  I was pleased to hear I was the same size – although  not the same shape as before.  This news was met with disbelief by my friend Sam, who insisted ‘they are definitely smaller.’ Still I was happy with what I brough.  When the lady suggested a bra with see-through lace, which clealy showed my scars I thought, why not? and got it.  The scars are part of my journey and I’m not ashamed of them.

I said last time, I’ve had no regrets and that still stands.  The hardest thing has been the tiredness, which has now been attributed to low iron levels and for which I now have tablets.  I timed the operation with the intention of carrying out big plans next year, including starting an MSC in Counselling in September so I really need to be at full fitness for that.  I’ve also been diagnosed with high blood pressure so I am seriously going to have to make some life style choices – probably concerning diet.

I don’t think this experience has changed me at all, I was obsessed with doing as much in life as I could before, especially since losing my mum.  I know some people – possibly including my husband – think I should slow down at times, but I just can’t.  Things are always new things coming along that inspire me to get involved.

At some point I need to confront the fact my defective brca gene gives me a 50% chance of ovarian cancer, the same disease that killed my mum.  I’m waiting on a hysterectomy because unlike a mastectomy, it has implications for other parts of your health including hormones and bones.  I think I’ll revisit this in a decades time and hope I’ve played the odds correctly.

In the mean time thank you so much to all the family and friends who have supported me through this and to everyone who has sent me kind messages.  It really has helped.

Now to get on with the next part of my life.

 

Adventures In Authentic Living

Warning Sign "Children" between Braşov and Sânpetru

 

‘The curious paradox is that when I accept myself just as I am, then I can change.’

This is Carl Rogers famous quote and one which has resonated with me.

I love my life as a wife, mother and worker but in recent years I have become much more self analytical.  I started looking at understanding myself, and writing lists of reasons why I was grateful, what I’m good at and what I wanted to do.

So what does accepting yourself really mean?  On Saturday a stranger complimented me on my dress.  I’ve never been interested in fashion, never felt confident in expression of myself through dress and wore jeans for most days of my life.  Then about 2 years ago I bought a dress which made me feel wonderful.  People began complimenting me on it.  I now hardly ever wear jeans.  I dress in clothes which are more an expression of me and I attribute this to me feeling more comfortable being me.

I really feel I have embraced who I am.  The awkwardness of wondering what people think of me left as I grew in confidence.  I think some of this acceptance comes from my realisation that life is short.  My mum’s ovarian cancer diagnoses and death and my discovery of my defective brca1 gene, bought a change in me.  A new valuing of myself came about.  I no longer wanted to waste time on things and people that were not for me.  Now anything that interests me I pursue – politics, study, social events.  The downside of this is I am very busy.  What I have found is I love the journey of new things, the learning, the experiences.

So I’m going to end as I started – with a quote from Carl Rogers which hopefully sums up what I have been trying to say:

The good life is a process, not a state of being. It is a direction not a destination.’

“The only person who is educated is the one who has learned how to learn and change.” 

 

 

 

 

 

 

Self Awareness, Friendship, Identity, Authenticity and Gratitude

 

friendship

So, after a very good recovery from my mastectomy I awoke yesterday with immense pain which I am reliably informed is a result of my over doing things!  It should be no surprise that my wonderful friends have rallied around, taking my children to school, bringing me food, making me toast and generally making sure I’m OK.  Every since I decided to proceed with the operation they have supported me, and helped me with the practical things.  I’m sure none of them know how much this means to me.

This year I undertook at Counselling course at Goldsmiths College.  Such a course inevitably leads to a lot of self-reflection.  There are two things in particular that I have realised I define myself by and which give me meaning.  One is that I feel an overwhelming need to be busy.  By this I mean to take part in as many activities and experience as much of life as I can and the other is that I define myself very much by my reationships.

I have  been drawn to  the work of Carl Rogers and his belief in the human capacity to strive for fulfillment and greater integration.  Self exploration and analysis lead me to the pursuit of growth, which genuinely occupies me.   Over recent years I have taken up many new hobbies, active fundraising through experiences like skydiving and fire walking, studying, volunteering and am always visiting new places and trying new places.  This relates to my self concept as a person who is useful, seeks to make a difference and try new things.  My friends have absolultly supported me in this.

Rogers looked at the work of Raimy and defined the idea of the self-concept being about the ‘perceptions of the self which are admissible to awareness.’  The perceptions may be related to abilities, environment values and experiences.  I’m interested in those parts of myself I am not aware of.  I wonder what I see in myself that differs from what my frinds see.

Johari’s window is a self-awareness tool I have always been drawn to ( –http://www.selfawareness.org.uk/news/understanding-the-johari-window-model) which defines the self into four areas, those areas known to the self and others, those known to others and not the self, those known to the self and not to others and those hidden from the self and others.  I wonder what the perception I have of myself is to that of others. I consider myself to be transparent person which is interesting as I was a very shy child and have transformed into someone more sure of themselves.  I think this has partly come about because of my pursuit of new experiences and my adoption of a growth mindset.  I wonder whether others define me in the same ways I do and at times I doubt myself and wonder if people find me too honest or too passionate or generally difficult.  Friends regularly joke about my compulsion to be busy and so it is something that very much forms part of my outward identity.  I wonder if others view it as a positive or negative attribute.  

Van Deurzen (2002: 43) argues that existential anxiety and therapy is about finding your own purpose and living authentically: as your conscience dictates and being true to yourself.  This really resonates with my in terms of attitude and drive, and I must be honest and acknowledge I have a fear of discovering I have been living inauthentically and ending my life with regret: this is what spurs me on. I seek to live visibly in accordance with my own value base which I relate to the Gandhi quote ‘Be the change that you wish to see in the world.and the Neil deGrasse Tyson quote ‘For me, I am driven by two main philosophies: know more today about the world than I knew yesterday and lessen the suffering of others.” (Both quotes taken from Goodreads.com).  I have both written on my wall.  I am aware this might sound sanctimonious but it really means a lot to me.

 

 I have concluded that activeness is tied up with my self concept and the conditions of worth I place upon myself. I strive to be useful, to make a difference and be of value and without this I feel lost.   I then wonder does that make my actions in helping others to be self-serving?

Analysing myself it is clear that being a good friend is a major part of my perceived identity, in regards to how I view myself.  I’m fortunate to have a lot of very enriching friendships.  For the last two weeks being reliant on others and not being able to give anything back has been a new experince, this coupled with my inability to be as busy as usual has forced me to look at myself in a different light and accept that sometimes I cannot take control and must accept help.

But what of what my friendships bring to me.  In On Becoming A Person Rogers gave the hypothesis ‘If I can provide a certain type of relationship, the other person will discover within himself the capacity to use the relationship for growth.’  Over the past two years, particularly since I lost my mum, this has really been the case for me.  I’ve been enthused to try new things and, most importantly I’ve found acceptance of myself as a person who is fine as they are.  Carl Rogers also said ‘It is only when I have accepted myself that I can change.’ Like most people I used to worry about what people thought of me.  I was never popular at school, the way I walk, dress and talk seemed to annoy some people. As I have grown in confidence I honestly have little regard for if I am not to some people’s taste.  I strive to be a better version of me, not someone else, but me with more knowledge and making more of a difference.  You know what makes that possible?  Supportive friendships that are characterised by acceptance, encourement and a genuine want of the best for you.

So as I write this from my sofa where I convalese, knowing two of my friends are coming over to help me later I just want to say to my friends, thank you so much for letting me be me.

 

Friendship...

 

 

The NHS Staff Are Heroes, So Why Do We Let The Government Treat Them So Badly?

This blog appears in The Bastion:

http://www.the-bastion.co.uk/?p=270

Two weeks ago I had a mastectomy. I went into St Thomas Hospital where surgeons removed my (currently) healthy (and frankly beautiful) breasts and reconstructed new ones using tissue from my stomach in what is known as diep flap reconstruction.

The reason I chose to do this is I have a defective brca1 gene. This gene is usually a tumour suppressor, but it’s faulty status in my body gives me an 80% chance of developing breast cancer.

Since I told people about my decision to proceed with the operation, thus reducing my cancer chances I’ve had a lot of people tell me I’ve made a brave or heroic decision. Of course, that is not true, I was in the fortunate position to be able to take control of my own health and future. There is a hero in my story of course, in fact there are several: the NHS and their staff.

How could I have taken a decision like this without the NHS? From the moment I saw a genetic counsellor at Guy’s Hospital who talked me through the decision to take the diagnostic test to the nurses I saw at the Wound Clinic today I have been treated as an individual with individual needs and have been dealt with by highly trained individuals too numerous to mention, but that include surgeons from two highly trained teams (breast and plastics), anaesthetists, researchers, specialist nurses, physios and other great professionals like porters and health care assistants as well as volunteers supplying services such as the patient cinema at St Thomas’ and helping in the waiting room at clinics.

In all of this, despite the nature of the decision I made and the operation meaning I spent a lot of time undressed I never felt I was losing my dignity. I was helped to shower, comforted as I vomited, helped into bed and had my complicated wounds checked every single hour. The empathy of the nursing and other staff left me feeling good about myself.

I also never had to make any decision in which cost had any bearing at all. Money was simply never mentioned at any stage. Compare this to the situation I could have faced were I an American citizen where my decisions would be governed by the level of insurance I had. Where I may be tied to my job because of the insurance package it gave were the procedure to go wrong at any point and revisions needed. Where I might find parts of my treatment were covered and others not and where the threat of reduction in Obama Care might have forced me to make decisions early.

Now ironically my hospital room overlooked the Houses of Parliament and I happened to be recovering when the Labour Party amendment to give public sector workers a modest pay increase was voted down by the tories to cheers and cackles. Austerity has left public sector staff getting progressively poorer year on year. At the same time the tories have continued to cut tax for top earners.

The number of billionaires in the country has actually risen, this is in a context where the nursing bursary (a recognition of the work students nurses provide on wards up and down the country and the hours they study making it difficult for them to support themselves) has been scrapped. Rather than scrapping it there is a credible argument student nurses should be paid the minimum (sorry, living) wage for the hours they spend working for the NHS. Indeed I was cared for by several students nurses during my stay in hospital. Looking after sick people is no easy task and they all did brilliantly. It’s an absurd thought that they are reliant on loans and overdrafts to allow them to carry out this work and that after a 12 hours shift in the hospital some will have been off to other jobs just to pay their rent. The nursing courses are tough, and that is right as it is hard work, physically, emotionally and academically. Why on earth would we make it hard to survive financially too?

It’s not just student nurses hit by austerity. 17 nurses a day apply for payday loans and there has been rise in nurses attending food banks. A 40,000 shortage in nurses is, maybe unsurprisingly, predicted.

Then there is the treatment of other hospital staff. For example last week porters, security staff and domestics at Barts Health NHS Trust who are actually employed by Serco (but paid for by taxpayers of course) decided on strike action. They are asking for a 30p per hour pay increase. Serco made profits of £82 million last year.

This country is the 6th richest on earth. Why are we happy to treat our health care workers with such disdain? I owe the NHS staff a huge debt of gratitude, as do many others. I am ashamed that this country is not prepared to reward them with decent pay and conditions and I fear in the future many people, in my position will simply not be able to enjoy the excellent treatment I did.

Rocking Replacements

I thought I would do a quick round-up of the products I have tried to use to replace plastic and how I have got on.

Straws

I absolutely love drinking from a straw.  I just think a drink just tastes that bit nicer through a straw, it is also better for your teeth to drink fizzy or coloured drinks this way to avoid staining.  Since I became conscious of cutting down on ‘use once and throw away’ products straws are probably one I felt most guilty of using.  Fear not though I have replaced them with a stainless steel version and keep one in my bag at all times.  It does take a bit of getting used to but I’m quite happy with this one.  The important thing is not to leave it behind in a bar!

 

Bags

Obvious one here.  I’ve got a couple of parachute bags that fold us to be very small which I keep in my handbag.  I must say I am sick of shopping deliveries coming with the frozen stuff in extra bags!

Cups

Previously I was using the disposable cups from the water dispenser at work.  Now, of course, I realise they are not disposable at all as they take around 450 years to decompose. Yes they can be recycled, but this is a waste of energy.  So I now keep a ceramic cup on my desk.  In Costa the other day I saw a ‘mug for life.’  I’m generally not comfortable buying plastic items but I decided this was a good buy to avoid using those paper cups with plastic lids that are dished out by coffee places.  I made sure it did not have any BPA in  it (link here http://www.mugforlife.com/the-original-mug-for-life).  I’m really pleased with this item.  Again, I keep it in my handbag.

Razor

Encouraged by a blog I read I have invested in a safety razor instead of the plastic disposable bics I usually use.  I must confess that my first go with this did not go well, with my legs witnessing some sort of crime scene.  I’m going to persist with this one and see if my technique can improve.  I certainly like the idea of this and it is an easy way to save money.

Toothbrush

This was an easy one.  I got a bamboo toophbrush from ebay.  I like it’s nice soft bristles so will stay with this change.  I’m going to look at replacing make up brushes next.

Spork

Another slight compromise as it is made of plastic but I am keeping a spork in my bag too so I don’t have to use the disposable cutlery when I buy a take away lunch from a supermarket.

Make up pads

I don’t use cleanser since I ceased with shop bought cosmetics and much prefer my Himalayan  soap and oil (https://www.facebook.com/paulassoapdeli/)

So it makes sense to replace the bleach heavy and ‘use once throw away cotton wool I used for make up removal with a washable product.  I have therefore invested in some wool cleansing pads from a company on etsy called Loopy.   (https://www.etsy.com/uk/listing/519434481/facial-cleansing-pads?  ref=shop_home_active_3)

Jars

Bit old school this one, but I am now making my cleaning liquid in an ex-pasta sauce jar and have my toophbrushes in am old jam jar.  The bonus of this is they are much easier to clean.

 

So small changes, but all save a bit of money and more importantly lead to a bit less waste in the bin.  Any other ideas to save waste greatfully received.

Neals Yard Party Review

So, since I started my journey in natural living quite a few friends have joined me in making anti-chemical changes to their lifestyles.  One such person is my friend Ceira (@CeiraBarber on twitter and Ceira’s Neals Yard Remedy organic page on facebook).  She started using Neals Yard sun cream on her daughter as conventional creams badly affected her skin. Then she started buying more products from them and then decided to start selling their products as a consultant.  As so many of our friends are now trying to reduce nasty chemicals in their lives last night we had a Neals Yard party.

We started by playing some games, one of which was the ‘guess the essential oil’ game which I have to confess to people quite useless at.  Another game we played was to form pairs and write six things we like about the other person (we all paired with someone we know well).  I love this as I am such a believer that we do not spend enough time concentrating and, more importantly, verbalising what is good about life and the people we choose to have in our lives and that most people are unaware of the qualities they possess that people like about them.  They were a few tears in this game, but I definitely would encourage people to try it, as I think looking at and sharing positives is so good for the mindset of everyone.

Suffice to say there was a bit of drinking and banter.  Everyone enjoyed trying the products and exchanging advice about things to do that can cut chemicals in different areas of their lives.

I think these themed parties are a great opportunity to get like minded people together and have a good time.