Reform, Recover, Restore

Reform, recover, restore. This is my mantra for dealing with the physical and psychological process of mastectomy.

Reform comes first – the act of taking something, changing its form and replacing it with something else, something that is similar to and different from the original.  The original brought with it a very high risk of future breast cancer, a likelihood of anywhere up to 75%. The reformed version is a reasonable reproduction – aesthetically acceptable, undetectable under clothing and more importantly, it reduces the risk of a new cancer by up to 90%. Some mental reform is necessary because a newly reconstructed breast looks and feels quite alien but sitting on a time-bomb where the tiniest change in size, shape or structure might indicate another cancer is much more disconcerting. The surgery is challenging and the scars are unsightly but I am unable to mourn the loss of something with the potential to kill me. As mantras go this reform is welcome, positive and reassuring.

Recover is next – time, discipline and patience – aka The Difficult Period. The initial effects of surgery wear off quite quickly – grogginess subsides, pain disappears, cognitive and physical energy begin to return.  A couple of weeks down the line all seems well, the sun is shining and that’s when temptation begins to creep in.  There are so many things I’d like to do, so many chores that need to be taken care of and so much I’m tempted to just get on with.  Our bodies are expert at on-the-fly repairs when given half a chance. The challenge is embracing sufficient discipline and patience to allow those repairs to take place. Resisting temptation when the overwhelming urge is to get up, get out and get on with things is difficult but right now Spring cleaning, gardening and sorting this year’s charity donations all have to wait. The recover part of the mantra is the one I have trouble with. The Difficult Period – time, discipline and patience – slows me down and leaves space for frustration to creep in.  Three more weeks and this phase will be done.

Restore is the last part of the mantra. It builds on the recover phase by addressing the frustration of ‘taking things easy.’ It’s positive and welcome because it offers the opportunity to set some goals, work to accomplish them and in doing so improve. Stamina, strength and agility can each be rediscovered, tested and refined. Help and support are welcomed and appreciated but being a burden to others and a frustration to myself are not. The restore process takes time and effort but its worth it. Eventually the list of things I’m able to do unaided will once again exceed the list of things I need help with… and that’s exactly how I’d like it to remain for the next thirty years or so.

Reform is complete, three more weeks of recover to accomplish and then I can focus intently on restore 🙂

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Cicatrix

  1. a scar left by the formation of new connective tissue over a healing sore or wound.
  2. a scar on a plant indicating the former point of attachment of a part.

We all gather scars, some more visible than others.  They mark the various knocks and scrapes we encounter as we make our way from childhood to old age. The grazed knee in the playground, the cut finger in the kitchen, the gashed hand in the garage – each serves as a reminder of our calamities and mishaps.

Yesterday the dressings protecting my newest wound were removed. It isn’t pretty.  Long and red it sports uneven edges, rough scabs and is filled with medical grade superglue.  Around it lies a fair amount of swelling and bruising, some blue-black, some yellow.  Tell-tale holes at the side of my rib cage (a modern vampire bite if ever there was one) signpost the point where the drains used to be. The complexity and scale of this surgery is easy to underestimate.

Once settled and healed I’m confident the reconstruction will be a good match for it’s opposite number. That scar has now faded to a straight, flat, thin white line. Little more than six or eight centimetres from end-to-end it is reasonably unobtrusive given it’s calamitous reason for being. Like the forty year old scar from a fall in the playground or the one in my heel (from treading on broken glass at nineteen), each cicatrix has its own story to tell, a series of events that led to its appearance and some lessons learned along the way.  An up close and  personal experience of cancer isn’t something any of us wants to learn from so prevention is definitely better than treatment as Angelina Jolie will no doubt attest. Surgery is a radical option but for some of us it’s the best thing science can offer right now.

I’m not a huge fan of Picasso’s art but one of his sayings is useful when reflecting on this experience: “Others have seen what is and asked why. I have seen what could be and asked why not.”  Being covered in permanent cicatrices, deconstructed and reassembled – none of it is pretty – but cancer and the chaos it creates is much uglier.

Written in the stars?

image

Constellation: Leo

I confess I don’t believe in horoscopes but every now and then something comes up that might just hold a smidgen of accuracy. Today my horoscope says: “This week you are reconstructing something that was once deliberately dismantled. It will be a positive process.”

Prophylactic mastectomy could easily be classified as something being deliberately dismantled. In this case a left breast. Immediate reconstruction with ADM plus an implant is reconstruction (of said left breast removed and reconstructed on Wednesday afternoon). This week’s horoscope begins to sound quite plausible. “It will be a positive process.”  That’s such an open-ended statement. Does ‘it’ relate to the dismantling, reconstructing, both or something else entirely – there are a host of physical and psychological processes going on right now but are they positive processes?

After giving this a lot of thought the only conclusion I can draw is yes.

This surgery had the potential to resurrect so much that was difficult, painful and confusing, negative even. Being diagnosed with cancer isn’t a positive life event; my previous surgery was cancer surgery and it caused significant disruption in my life and the lives of my loved ones.  We are still recovering from some of those problems. This time around the procedure was broadly the same but the reasons are different. The next steps won’t (with luck) involve any further treatment.

I can’t change what’s written in the stars, or more precisely, in my genetic code but limiting its potential impact is another story.  Taking action is a hugely positive process. It is not without cost but what value do you place on the chance to live beyond 50 years of age, to see your child grow up, meet your grandchildren, enjoy your retirement?

Women with two or more close relatives who develop breast cancer at an early age fall into the high-risk category. Those who’ve already experienced the disease face an increased risk of another encounter. I tick both of those boxes and my first encounter was aggressive and high grade. Very recent research indicates the risk for women with long histories of familial breast cancer may be as much as 1 in 3 rather than the typical 1 in 8. I tick that box too. For people like me undergoing prophylactic surgery may reduce the risk by as much as 90%. Of course it’s important to remain vigilant because risk-reducing surgery isn’t a panacea, it doesn’t make cancer an impossibility in the same way wearing a seatbelt doesn’t make everyone survive serious car accidents.

In life there are no guarantees – never were – we just kid ourselves that we’re invincible. However the benefits of this process, of dismantling and reconstructing, aren’t just physical. For me some of the most positive aspects are psychological. No more annual mammograms that leave me fretting over the reliability of results. No more second guessing self-exams that might or might not have uncovered another anomaly. No more thinking of my own flesh as a time bomb waiting to go off (again).

For more than twenty years I lived with a question that I was never able to answer to my own satisfaction. The question: “Have I done enough to reduce my risk of cancer?”

For the first time in a long time I am able to answer fully and frankly: “Yes. There is nothing more I or anyone else can do.”

The Oncologist Part Two

Kidderminster TC

 

This is where I saw the Oncologist yesterday. It’s where I spent hours (around 70 in total) rigged up to a pump receiving chemicals that come with large biohazard symbols all over them.  Getting close-up and personal with something covered in that particular symbol is great for building risk tolerance, almost akin to lighting matches at the petrol pump or playing Russian roulette.  Cancer is very much like Russian roulette – a potentially lethal game of chance – and although I know the those hazardous chemicals are designed to change the odds, seeing something marked biohazard enter a vein can never be anything other than disconcerting.

I dutifully completed my Persephone trial questionnaire reporting overall improvements in general health, no change in joint pain, continued loss of earnings compared to the pre-cancer days and relatively normal cognitive functioning, so long as I’m not tired.  My height was checked: this always makes me laugh because at my age there is no chance of further vertical growth and only a slight chance of noticeable shrinkage.  My weight was checked: this never makes me laugh because in spite of very regular exercise, healthy eating, plenty of water and a near zero alcohol diet there is still plenty of potential for horizontal growth and only a remote chance of microscopic shrinkage.  Stick thin are words that are unlikely to enter my vocabulary any time soon.

The Oncologist came out of his office to find me, which was unusual because he’s normally too busy to move. After the usual questions we proceeded to the examination which includes tapping over the liver, various prodding of the neck and chest and visual inspection.  All seems well so we proceeded to a conversation about ongoing joint issues – both knees, both ankles and right-hand fingers.  For a long time I have suspected these are all treatment related irrecoverable side-effects. Yesterday the Oncologist confirmed my diagnosis and acknowledged my underlying suspicion that any further improvement is unlikely to occur.  I had prepared for this eventuality; the joint situation is annoying, frustrating and often painful but at least it isn’t cancer. Having its permanence officially confirmed was too good an opportunity to miss so I asked the Oncologist in my most serious tone how I could possibly be expected to climb Kilimanjaro and then run a naked marathon next Spring.  This had the desired effect of making him laugh and put Sally the trials nurse into an uncontrollable fit of the giggles.

Once we all returned to cancer clinic stoicism I asked about the outstanding preventive surgery, described my family history as prolific, aka develop one get five free, and as we all die before age 50 it’s positively infuriating because none of us get to see the paltry pensions we worked like slaves not to have. It may be gallows humour but for my unfortunate predecessors  it’s also true. This made the Oncologist laugh, Sally hadn’t fully recovered from the naked marathon and two laughs in one appointment is quite an achievement. After confirming I’d given it plenty of consideration, know exactly what more surgery entails and have no fear (psychological or physical) about it, the Oncologist and Sally agreed they are both of the mind that it’s a very good idea and unlikely to fall into the over-treatment category in my case. A consultation with the oncoplastic surgeon will be arranged shortly…

All in all the visit was successful. No sign of anything untoward – check. Confirmation that treatment, not age, is responsible for various joint mayhem – check. Validation of my position on the outstanding surgery – check. Making the Oncologist laugh – check, twice 🙂 .

Wilful Insubordination

It’s 15 months since my original diagnosis, the diagnosis that seemed to spell doom because just about all the features of the tumour pointed to invasion, aggression and far from satisfactory medium/long-term disease free survival.  Trawling the World Wide Worry-maker in hope of some success stories left me shell-shocked and saddened. The number of very young women (and later in my research men too) facing their final hours inside a couple of years of this kind of diagnosis was, quiet frankly, frightening.  I stopped visiting certain forums because the scale of lost life and lost love was too painful at a time when the extent of my own challenge was yet to be confirmed. It took three months to establish exactly what I was dealing with and what it would take to address it.

Much has happened in 15 months. A mastectomy and immediate reconstruction using acellular dermal matrix, three rounds of FEC chemotherapy followed by three rounds of Taxotere. Nine Herceptin infusions. Steroids, non-steroidal anti-inflammatories, a bi-lateral salpingo-oophorectomy. A permanent needle intolerance that developed out of nowhere and seems to be going no place fast. It’s hard to believe this sack of bones and blood is a body any more. From the neck down its more like a modern masterpiece of medical experimentation, a Damien Hirst of intricate and iatric well-healed scars but scars nonetheless.

It would have been easy, very easy indeed, to give in to the monster; to accept this kind of diagnosis doesn’t turn up too many long-term survivors. By long-term I don’t mean the 5 or 10 years medicine considers when calculating statistics. I won’t even have reached my mid-fifties by then. I mean proper long-term, the forty or fifty year kind, the kind where I could safely be described as a little old lady. Or a cantankerous old bag, I don’t mind either way. Giving in to tyrants has never been one of my biggest strengths though.

Yesterday I had my first “routine” follow-up appointment. The English language is so laughable at times. Routine means usual, ordinary or everyday. Funnily enough I was not in the habit of regularly baring my breasts to complete strangers. I most certainly wasn’t in the habit of letting complete strangers touch me. Not so long ago anyone trying that might find themselves in possession of a sharp slap. Time and context changes everything.

Have you ever wondered how strange it might be to talk about work and children and holidays for 15 minutes while someone you barely know thoroughly examines a part of your anatomy normally reserved for those with a privilege pass?  A year ago I’d have considered it very strange. Today it is almost routine.  In these situations the talking me exists somewhere separate from the hunk of meat laid out on the examination table – the hunk of meat that happens to be the only home I have. The talking me converses with humour and gratitude about the past 15 months and she is even coherent enough to answer that yes, there are a few areas of the reconstruction that could be improved upon now the foundations have settled. The nice-but-barely-more-than-a-stranger consultant is kind and enthusiastic, suggests those improvements are completely possible with liposculpture, a procedure that is far less traumatic than those that went before.  The talking me laughs and says you can take as much fat from my butt and stomach as you like because there’s plenty to give. Not this year says friendly consultant because now we need to give your body proper time to recover from everything it has endured. The talking me wonders if it’s just my body they’re thinking about.

I spoke to my father the evening before this appointment and joked that if anything untoward showed up following a treatment regime that would easily pole-axe Attila the Hun then I must be truly damned.  The appointment came and went and I am not damned, at least not at this moment. There is no sign of disease today.   I breathe a small (and in no way complacent)  sigh of relief whilst giving cancer the regal two-fingered salute it deserves.

The past 15 months has been an exercise in wilful insubordination. No doubt the rest of my life will be spent perfecting that skill.

FUcancer

Courtesy of Cancer Research UK

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all” -Dale Carnegie.

 

Anniversaries & birthdays

Oxford, England. There's something beautiful around every corner.

Oxford, England. There’s something beautiful around every corner.

August is a month I always have cause to remember.  Aside from the potential for some good, warm summer days and spectacular sunsets it’s a month of anniversaries and birthdays.

Truth be told I would rather forget the anniversaries but they’re indelibly part of me so erasing them won’t ever be possible.  1st August 2012 was the date of my cancer surgery. Since then there’s been no escape from the scar or the events that followed over the course of the next 11 months.   On 13th August 2013 I’ll be creating a new surgery anniversary when I go for a salpingo-oophorectomy in another attempt to reduce future cancer risk.  I’m told this surgery is less challenging than the mastectomy operation but either way my mind was made up over six months ago so I just want to get on with it and put it behind me.

The birthdays in August hold happier memories.  It’s my brother’s birthday today.  He’s 1 year and 364 day’s younger than me and I can still remember him as a young child; all blonde hair, hazel eyes and covered in grass, mud or blackberry stains! Having our birthdays one day apart must have been such a headache for our parents but we always had a good time.    My Great Aunt’s birthday is in three days time.  She is such a sweet lady, in her mid eighties and one of the most lovely people I’ve ever known.  Like me she had one child, my cousin Glenys.  Glen didn’t have an easy life and died far too young, I can only imagine how difficult the loss of her only child must have been for my Aunt.

My birthday is tomorrow and my recollections of myself as a child are missing in action.  I do remember my 21st birthday, a meal with family who were very dear to me. Sadly most are no longer here but the memories that remain are happy ones.  My 24th birthday stays in my mind because it was just a few weeks after my son was born and I really was that proud new mother who idolised her child and spent every day wishing the most perfect and positive future for him.  I still spend every day with the same hopes for him and his future.   I recall being 29 – I’d moved cities and made new friends so was lucky to have some very special people to celebrate with at that point too. Some have gone on to become long-term friends and I’m very fond of them. My 40th birthday didn’t turn out quite as expected, it holds some bitter-sweet memories as things have changed dramatically since then and some of the people who made it special no longer share this life with me.

Last year I was simply happy to be alive and at home; I’d expected to be in hospital recovering from surgery.  Other than being dead, being in hospital is next on my list of least favourite things to do. This year I’ll be at home and in spite of everything cancer treatment has thrown at me I’m doing pretty well.  More surgery is looming but at least this time its my choice to go ahead with the operation and it’s happening after my birthday so there’s no danger I’ll be somewhere I don’t want to be on the day 🙂  I’ll be a year older tomorrow but I feel 20 years older and 200 years wiser if that’s even possible.

By this time next year I’m aiming to feel something like my real age with some light-hearted insights to life, the universe and everything created through happier times and positive experiences… instead of situations I’ve had no choice in – cancer treatment, absent friends and life-changing events.  Creating some new, happy memories started on 1st August with a visit to the dreaming spires of Oxford and an evening with some special friends. Tonight my son’s coming home, I’ll cook for him and tomorrow we’ll spend time together just enjoying each others company while we have the chance.

Ascent Complete!

Ascent CompleteSnow 0 Tracy 6

Ascent Complete
Snow 0 Tracy 6

That’s it. FEC-T is over. Everest has been ascended in flip-flops and a sarong – entirely inappropriate attire but it was all I had on me at the time so I had to make the most of it.

It was snowing this morning and had snowed all night. My handsome prince was a no-show so I guess he accepted the crone’s apple!  I managed to stay awake all night thanks to dexamethasone.

Fortunately the journey to chemo camp involved traversing sparkling powder snow but at 8.30am it wasn’t too treacherous. By 1.30pm the situation had moved on.  I’m glad the journey home wasn’t later in the day as it wouldn’t have been feasible; folks had already abandoned cars in many areas.

Snow didn’t defeat me today and I’m happy about that but above all else I’m so glad the chemo part of this adventure is over. Bye-bye FEC-T hello return to normality.

The journey, however, is not yet complete.  I still have to master the descent to base camp via successful completion of the Persephone herceptin trial plus some further surgeries. I’ll make a date with Miss M (oncoplastic surgeon) and Mr Ch (gynae specialist) so they can extricate the remaining female parts of my anatomy during 2013.  Miss M will create a new silicon masterpiece matching the one she gave me last August. With up to a 90% reduction in the risk of further sinister developments in my presently human left side, this is a surgery with ‘do it’ stamped all over it.  Mr Ch has offered additional risk reducing surgery via removal of bits and bobs that are likely to go wrong – ovaries and tubes!

Unfortunately breast and ovarian cancer mounted a dual assault on my ancestors decimating them all at an early. Miss M, Mr Ch and my own GP all recommend these additional surgeries to improve my odds.  For my part I intend to do as much as possible to avoid another tango with a small dark stranger who isn’t handsome, charming or in any way a pleasure to dance with.  For me, more surgery is less daunting than the prospect of early recurrence/metastasis; HER2 positive breast cancer is renowned for these traits.

I know surgery isn’t a silver bullet but I will know in my heart I did everything possible to keep the stalker of evil intent at bay.  For now though I can’t get too excited about my Everest descent because I have to deal with a huge parcel of drugs plus a bright yellow sharps box designed to see me through the aftermath of TH-3.  I’m adverse to drugs especially when copious quantities are involved; the weather and my dangerously high temperature incident a few weeks ago have changed my mind just this once.  I can’t afford to be snowed in with neutropenia because the emergency services can’t get here at the moment. Dying of neutropenic sepsis will never be on my to do list, so I’m having BONC.   (N.B. this is not to be confused with having ‘a bonk’).

BONC includes dexamethasone, the insomnia inducing beet steroid that turns me into an overgrown version of the Ready Brek Kid complete with deep Beetroot coloured glow visible from c.3 miles away 🙂 . Ondansetron to combat sickness.  11 days of Ciprofloxacin (preventative antibiotics) and 5 days of Neupogen injections that I’ll self-administer.  Neupogen forces the bone marrow to produce neutrophil precursors, a very good thing following Taxotere. The downside is that it can cause pain inside bones, especially long bones and the sternum.  As ever I’m hopeful any side-effects will be minimally disruptive.

Nurse L (one of the loveliest people on our planet) said my return to normality will begin very soon now… I can expect to see some hair putting in an appearance. This will be weird. I’ve finally become accustomed to the bald cone-head look though I find it very chilly.  I’ve been tempted to borrow Elizabeth’s rain hat, complete with its warm ear flaps but I don’t trust UK customs officials to get it here undamaged. So the sooner my hair decides to show up the better and I don’t care what colour or texture it is, I’ll be fine with anything that delivers a nice warm feeling in the upper head region 🙂

One final word before I sign off. To everyone out there faced with an aggressive breast cancer diagnosis, a conversation that says it’s treatable (not curable) and what seems to be a very long, daunting and arduous journey ahead, please know that you can do this.  I’m not going to say it’s easy or enjoyable but equally it is not the end of the world.  You can get through it and you can take your life back – whether it’s many years or a  few months it is still your time. Cancer cannot be allowed to ruin it.  As my dear friend Kozo (call in on him at Everyday Gurus) advises, this applies to many of the adverse situations we face in life, it is not restricted to the uninvited stranger that began stalking me with evil intent last May. So please don’t forget, you can do this.