Say “Cheese” – It’s Today!

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Growing up, this day, the 5th of December, has always been more special than others on the calendar. Being one member of a family of six, there were six of these such days in the year. Of course I’m talking about birthdays and today is my father’s birthday. It was this birth date that gave him his name, Nollag or Noel, and the coming round each year of this day also always serves as the push I need to get going with preparations for Christmas.

Officially now, Noel is an old-age pensioner (and I hope he won’t mind me publishing his age here) and a very proud recipient of his free travel-pass for use on Irish public transport. As he said himself, there will be no stopping him now, not that you could’ve stopped him beforehand anyway. Free travel or not, Dad has had itchy feet as long as I can remember and this year has seen him complete another St. James’ Walk in Northern Spain and his annual eight week voluntary stint in The Daughters of Charity convent in Mekelle, Ethiopia.

I almost forgot to wish him a Happy Birthday before he took the plane with my mother, back home to Ireland this morning. My parents have accompanied me throughout my breast cancer journey, providing the practical and emotional support I’ve needed at various stages along the way. I am so fortunate that they have been here to help out. I think, with absolute admiration, not bad for two “old-age pensioners”, who have more energy than me (for now!) and a vision only years of living experience can provide.

“Congratulations!” I said to my father at the airport and I really meant just that. Each passing year and birthday is an accomplishment in itself and worthy of celebration.

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Since I got to know Carlos (sixteen years ago) and all his family, today the 5th of December has another significance for me. This day eight years ago, my warm and affectionate mother-in-law, María Josefa (Maruja) left us. I recall with fondness, among many other days, but especially today, her arm-linking on the street, sharing an afternoon snack of milk and roasted chestnuts in her white kitchen in La Cañiza and her roguish titter when she’d catch you playing Ludo,

” Vas tu o quieres que te llevo a casa?” (Will you go or will I send you home?).

I was the Irish girl who came to Spain to “hunt down” one of her twin boys, the last of her six children and I have always felt fortunate to be loved and accepted by my Spanish “political family”, as your in-laws are called here in Spain.

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Today is a day for remembering my entire family, immediate, extended and political. Family is a unit, which I could not live without (literally), and which I think society benefits from too. I raise my virtual glass of bubbly alcohol to family and I look forward to the real thing at Christmas.

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And finally this day, the fifth of December 2016, marks the “grand finale” of my breast cancer treatment. Today I will have my last radiotherapy session and my body will be given back to me, delivered in a rail-car, at the end of one very long, steep and scary rollercoaster ride. The journey is by no means over. I will take tamoxifen, my hormone therapy, taken in the hope of avoiding recurrence, for the next five to ten years. In January I will begin the biannual revision tests also for five years. And if this cancer does not come back by my 45th birthday, I will be deemed a “cancer-free survivor”.

I said on my fortieth birthday, which I celebrated in the hospital the day after my mastectomy, “roll on my forty-first”! And I’ll continue to say for the rest of my life,

“Bring on the years, the wrinkles and the grey hairs, the children’s “coming of age”, partners, grandchildren or whatever else my future and theirs holds.”

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Thank you for following me here on my blog and here’s to life, health and living. I shelve my “pink cancer folder” and I park my cancer story blog in the hope that it stops here.

End of Story!

From the Doldrums Looking Up

My breast cancer treatment schedule has been slowly rounding itself up, day by day, as I receive my daily dose of radiotherapy. I have envisioned this end now for eight months and I had forecasted an exaggerated elated feeling. But, so far, it hasn’t materialised.

All along, I must have been spurred on by the momentum of the treatment plan. But now that the end is in sight, I am left with an overwhelming sense of, what now?

I am awash anew with thoughts of recurrence, metastasis, cancer aggression, dying. I could be scared witless but I think I’m saddened more; crippled by the thought of leaving my children behind, motherless. Any mention of sickness, death in passing conversation, on television, on the internet, switches on my water works. And I am crying for my children.

Of course I haven’t even finished my treatments, the odds are stacked in my favour…I’m not dead and I’m very much alive and fighting. But it just seems that the life or death stakes have gotten much higher for me and that has brought on this momentary, what is this, depression I suppose.

I never thought about my death before now. I had no reason to. And if you’re a true Christian, as I call myself, this “flirtation” with my death should come as no surprise. I mean there are only two things we’re really sure of in this world, right? Aging and dying. All the other life stuff is chance, luck, misfortune. So why did getting cancer and contemplating my death come as such a shock to me?

Because I wasn’t expecting it. I thought I was going to live until I was ninety nine (and who knows, maybe I will), healthy, strong and vibrant, only to leave this world quietly in my sleep. I thought I was going to be one of the lucky ones. I thought I was going to be invincible until the end; the end of a long, energetic life, achieving great things.

And then you get shot down at age forty. Any remnants of youth, bodily image, energy and vitality stripped clean away by surgery, treatments and pills. You are in the dark as to when and how much of these qualities you can somehow retrieve. And you realise, I mean really, deeply know and comprehend that you are not invincible, how very temporary this life is and just how fragile you actually are.

So indeed, what now?

Live. Everyday.  That’s my choice to the end.

It has taken me my lifetime to date to figure out what living means and I still search for essence. I’ll eat healthy foods but it’s not about the diet for me. I’ll build an exercise plan but it’s not about the workout. I’ll support cancer research but it’s not about the disease. I’ll return to teach but it’s not about the job. I’ll educate my children but it’s not only about them. I’ll spend more date nights with my husband but it’s not all about his love. I’ll connect more with friends and family but they too will pass.

So what’s life all about then? I have no definitive answers, I don’t think I ever will. Something about balance between all of the above strikes some chord of reason with me. There is The God aspect too and Art and Music, His higher expression through people, elements of life that fully draw me towards my core, my inner compass.

In the aftermath of cancer treatments, while my body still rests and heals to return to some degree of former strength and vitality, I’ll take this time to allow my soul to catch up with the medical procedures. My mind kept up in time with it all and thankfully I have all my blog posts to re-read and uplift my spirits. Now, my very melancholic soul, (by nature), must gently lilt its way up from these doldrums, back on to the surface, where life is happening, day by day, one foot in front of the other. These are and will forever be “My Spirit Walks With Breast Cancer”.

The Kitchen Workout and Peripheral Neuropathy

Taxol, the last chemotherapeutic drug I was taking, apart from doing its supposed job of preventing a return of cancer, can cause damage to healthy neurological cells by affecting the peripheral nervous system. It starts by causing a mild tingling in the fingertips and toes. As the weeks go by and more gets pumped in to your system, this tingling extends to the entire hand and foot, pains dart up and down the long bones of the arms and legs and the muscles there and around the neck and back really start to hurt.

By the end of the eight weeks, apart from having numb extremities, my hand, arm and leg muscles were so weakened that I could hardly get out of my bed for a whole week.

Then I began expecting an improvement. Ok, my mind would plan, tomorrow I’ll be stronger than today, so I’ll get up, do this and that, take a rest in the afternoon and I’ll be fine…I’ll be fine.

So, now I’m beginning to realise that my mind is not in charge here. Recovery from peripheral nerve damage is not an overnight process. It could take months and in some unfortunate cases, years. I can have a good moment and have a burst of energy but any rigorous activity will beckon a sofa, bench or bed to rest up the weary muscles.

I’ve never had to live measuring out my strength before and it’s a new reality for me. I find it quite challenging, exacerbated perhaps by not knowing when I’ll notice an improvement. This is a real test of patience and determination.

I say determination because I want to get better and feel normal energy levels again, to be able to practise sport to keep fit, to be active with my children and husband. My oncologist gave me no satisfactory guidelines as to what I can do to help myself in the recovery. Perhaps there really is nothing I can do but rest it out and wait. But the prospect of the next month or two or six of just resting up is not appealing to me. I’ve had my glut of internet and politics and virtual wars of love and hate. I’m willing to at least try and help the recovery process.

So once again I’ve taken to the internet, researching ways to live with and improve peripheral neuropathy. I have learned that many people with diabetes suffer from this condition, so they are another group I can empathize with on a physical level (as well as old, chronically ill and physically disabled people).

There are dietary supplements that are recommended but of course there has been no scientific study as to their efficacy, which is why, I assume, my oncologist can’t advocate them. But I know they won’t harm me so I’m taking a good vitamin B complex, known to be good at strengthening the nervous system, co-enzyme Q-10, which is good for joints and alpha lipoic acid.

Instead of showers, I have a daily bath, which really helps with easing muscle weariness. Every few days, I add 2 kilograms of organic sea salt or a cup and a half of Epsom salts to the bath water, which apparently helps with detoxification of the body. I always feel fantastically relaxed after the bath and I think it is a practice I’ll extend in to my healthy “normal” life well in to my future.

I was just skimming over an academic article last night about the actual biochemical process of chemotherapy-induced muscle damage. I didn’t have the patience to wade through the entire 75-page piece but I could glean from it, albeit in an indirect way, the importance of providing the body with lots of antioxidants. So, lots (and lots more from now on) of fresh fruit and vegetables for the next while.

My oncologist said I could maybe do some hand strengthening exercises, although she wasn’t convincing me as to their efficacy. After a full night’s sleep, my arms and legs literally feel like jelly. It takes all my will-power to get up out of the bed. But I have been reasoning that if I stay in bed, the jelly-like feeling will persist. Whereas if I get up, force my hands, legs and arms in to action, although they’ll tire, I can rest up afterwards.

So, the kitchen, of all places, has become a great work-out site, at least for my hands and arms. The usual tasks of chopping vegetables, washing dishes, hanging out clothes, typing and holding a pen and writing have become monumentous tasks of hard effort. And making scones! Let me tell you, between the crumbling and kneading, I never realized how good baking is as an upper arm exercise. For my legs, I get out and walk for now. Getting up and down steps is more challenging than normal so my stairwell is going to get a run up and down for the next while.

Finally at night, when my muscles are well and truly beat out and they actually hurt from exhaustion, I have discovered that deep, belly-lifting and chest-flattening respiration (Maria’s instruction) literally melts away the pain in less than a minute. Breathing is life-giving, restorative and relaxing. How simple can that be!

Cohen’s Conversations With God

 

Remember the day the world found out that Leonard Cohen died? Today. We all put up our favorite songs on Facebook, whatsapped friends and family, listened to all his songs in the privacy of home and remembered what each song meant to us.

“Suzanne”,  “Hallelujah”, “Democracy”, “Dance Me To The End Of Love”.

And then, if you didn’t already realise it, you discovered that he had penned one final album, his knowing goodbye, “You Want it Darker”. So on the day after his death, we could relish nine new unheard songs and listen to his soul pouring out before his death. Life doesn’t get grittier and more true than that.

How many people around the world poured out messages of love and loss and grief and thankfulness today for Leonard Cohen, whose words and music struck with something common, very deep inside all of us?

It felt like joint prayer and it united many people. And it was powerful.

When I heard of Leonard Cohen’s death, I remarked, “the world is a poorer place now”. I knew it was coming, he had a fragile frame of late. And there lies the sadness of death, the loss of the physical being here relative to the people left behind. But his music and poetry remain and so his spirit, the common spirit, belonging to everyone lives on. The spirit that is individual, not global; personal, not political. I am thankful that, despite his weakness and fragility, he brought forth his final breaths in very special songs, that today were written for his own consolation perhaps and for me and for you.

“So much of the world is plunged in darkness and chaos” (Cohen, London concert 2008), but we have the power to raise each other up with our prayers and common spirit and keep ourselves free enough to allow this spirit course through our beings, like Cohen. The world doesn’t have to be a poorer place without him. At the moment he took his last breath, a new life inhaled his first. An experience, which he elaborates on in his acceptance speech at the Prince of Asturias Awards ceremony.

To ensure a new life becomes great, it takes parents, educators, the world to provide a good education with unbiased history and cultural lessons and the space and acceptance in which to develop through time.

“So ring the bell that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.” (Anthem)

On Finishing Chemotherapy

The morning of All Hallow’s Evening was such an appropriate date to receive my last round of chemotherapy. A necessary evil in so many people’s cancer treatment schedule, it really is horrific and I was elated, to say the least, to bury it with the spirits from the underworld on Monday 31st.

I had envisioned finishing up with a jubilant glass or ten of bubbly. But the sparkling Cava (being married to a Spaniard, champagne doesn’t very often make its way into our house) is still sitting unopened in the fridge. The truth of the matter is that I neither had the strength nor the energy to be drinking sparkling alcohol.

After my initial high, spurred on by the cocktail of steroids you get with your chemo infusion, which usually lasts a day and a half after administration, I was hit by the usual slump both in energy and in mood. And then by Wednesday afternoon, the familiar flu-like pains set in as the anti-neoplastic drug, taxol, coursed through my veins.

However, as its effects on the body are accumulative, by my eighth infusion last Monday, I was literally on my last legs. Being stripped of all bodily strength, and especially in my hands, feet and limbs, the bed has been my fairly constant companion for the last week.

Thankfully the pains have subsided and my strength is slowly returning but if I overdo it on any particular activity, I’m liable to experience an energy slump at any given moment.

The most significant side effect of this Taxol, for me at least, has been on my peripheral nervous system, causing these dart-like pains at the joints, numbness of the hands and feet, which has all mounted to muscle weakness. My oncologist has informed me that it could take months to fully recover normal sensation and strength!

I hadn’t expected her to say that. I was hoping to be as right as rain in a week but chemotherapy has far-reaching consequences, I’m discovering little by little and will continue to realise over the next few months.

My body has been touched in so many unexpected ways and it is set to continue with the hormone treatment, which I’m going to start today for the next five years. That will provoke my menopause and so I will have to be vigilant of my bones.

I’m very much focused on the secondary effects of the chemotherapy, I realise. I find it difficult to experience so many changes in my body in such a short period of time. I have always believed that here on Earth, in this life, your body is your temple and so you must look after it well, by not abusing it with drugs, alcohol and by nourishing it properly. Regardless of my attitude though towards my body, I did get sick and the expected “cure”, chemotherapy, has weakened it considerably.

But it has hopefully warded off the stray cancer cells around my body so I must now focus more on that.

I’m finding I have to slowly bid adieu to old attitudes about health and fitness. I no longer care about the calories I consume, but question if the plate of food in front of me is providing nutrients for my body. A sick body can’t heal without energy, proteins, vitamins, minerals, a clean digestive tract and liver and a balanced immune system. And lots and lots of rest.

Regular exercise and a healthy body weight have been deemed by my oncologist the only demonstratable factors, beyond medication and also within my control, that can help to keep breast cancer away from an affected patient. I’m not sporty so the very thought of an activity called “regular exercise” really does make me yawn and turn over in the bed. But if it’s part of the prescription for a healthier future, I want to build it in to my life in an enjoyable way. So I’m thinking bike rides in the sun, dancing, speed walking, jazzed up by the company of friends. Let’s see how that goes! My husband has suggested running…and I growl.

So it’s onwards and upwards from now on. I still have fifteen sessions of radiotherapy to do before Christmas and then I’ll mount that plane to Ireland for the holidays, “a changed woman”. I’m thinking I’ll save the “bubbly wine” moment for then, bury 2016 and bring on The New Year!

A Modern Inconvenience?

I was roused from a sweet and pleasant sleep, minutes before the alarm clock sounded, by the appearance of the title of this blogpost as a thought written across my mind’s eye. I’ve had ideas brewing for days and unsure about how to tie them all together in a coherent text, I had abandoned them as scribbled notes strewn across various notes on my tablet.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.” Matthew 7:7-8.

I haven’t been asking God to help me write a better blog post (now that would be senseless) but I was reminded of this very simple method of supplicating to God, while reading this week and I felt compelled to write it down.

So what have I been asking for?

To be an instrument of His peace; to allow myself to do as He wills with me; to relax more in His presence, worship Him and trust in Him more.

A response so far has been a thought to dedicate less time to senseless scrolling on gadgets; I have recognized it is a source of unhappiness, discontentment with what I’ve got myself and envy of others. A renewed reminder not to take my tiredness out on those close to me now, my children, husband and mother. I struggle with this and need lots of support, lots of reminders.

And what about that title? Well, having lived through the “ocean of pink experience” on the 19th of this month (breast cancer awareness day) and attending a talk on the medical future for breast cancer survivors, I refuse to accept breast cancer as a modern inconvenience, which is sometimes how I perceive it seems to be portrayed.

The fact of the matter is, if I had been born less than two hundred years ago, and coming from Ireland, if I’d survived childhood, (and there was a fifty-fifty chance that an infectious disease would have caught me before the widespread availability of penicillin), and if a lack of food (due to The Great Irish Famine or just poverty) wasn’t weakening my bodily frame to death, I’d naturally, at age forty, be reaching my expiry date.

If all these screening and diagnostic tests weren’t available to me, (as they are not so freely available to a very large portion of women around the world), I wouldn’t even know I was walking around with breast cancer. And if the extensive variety of medication, the fan of which is widening at a YEARLY rate, didn’t exist, the number of my days would be easier to count.

“Teach us to number our days, that we may gain a heart of wisdom” (Ps. 90:12)

And the fact of the matter is, that the medication available to me now and in the future is not there for every woman around the globe. I am one of the PRIVILEGED ones.

Instead, those women less fortunate than me, are finding out too late that they have breast cancer or indeed, will never find out because they didn’t make it past childhood  or girlhood due to excessive hunger or lack of antibiotics or simple saline solution. Or perhaps, lucky enough to survive past school-going age (but not necessarily school-educated, like me) a girl has been sold in to marital or sexual slavery, or raped by attacking soldiers, or mutilated by gun people for trying to protect her children or an endless list of unthinkable attrocities. Breast cancer will probably never register on these women’s radar of fear.

I live a comfortable life, with a nice, soft bed on which to rest my chemical-wearied body and cancer is foremost on my radar of fear and pain. This is my walk. And it is as valid and important as the walk of any other woman around the world, even if I have to suffer less or more.

Modern medicine will prolong my life so I’m getting a second chance. I am SO grateful for that because I don’t want my children to be motherless or my husband to be alone any time soon.

A second chance at what though? To reconstruct my breast and cover up what was? To return to the mad rush of living like a head-less chicken? No. That would render this disease simply “a modern inconvenience”, an interruption to my life.  But it has to be, in order to make sense of my journey, more, much more than that. This medical interruption of my life has to be a stoppage, a spiritual introspection and redirection.

I finally realise where I’m going, heaven. And at last I know what I’m supposed to be doing, preparing my soul for that place, and blazing my trail along the way for others to follow.

At this stage, I’m content with my children following me. They’re the closest to my realm of influence.  I’ll continue to teach them to pray and to follow their heart in everything, because, as long as they are aware of and allow His presence there, it is the place, where God resides and directs our lives.

And so I “knock on the door” and “seek” the roadmap. In my illness I “find” the answers, “the door is being opened”. So I’ve had to “suffer” to get here, I’ll do it again if I need more reminding.  Jesus suffered, we all suffer in some way. God made no easy promises about this world.

“For you have been given not only the privilege of trusting in Christ but also the privilege of suffering for him” (Philippians 1:29).

But I find with this roadmap, the journey becomes easier and more restful. And that provides the spiritual meaning to my illness, one that far outweighs the importance of the modern inconvenience that is this disease in itself.

(I think it’s worth having a look at this website, which helped me put life, evolution and health inequity in to perspective: https://ourworldindata.org/life-expectancy/).

Head Knickers

The vital questions my mother asks before each visit to Madrid are,

“What’s the weather like?” and “what clothes will I pack?”

Now after four and a half years of Madrid living, I’ve come to understand one preferred statement of the locals,

“This (weather) is not normal in Madrid!”
(Esto no es normal en Madrid!)

So, if I’m to believe them, balmy afternoons and evenings stretching in to November is not normal and yet that’s exactly what we had the year Ana Maeve was christened in 2014 and saw me rush out on the very morning of that event to exchange her wool dress and coat for a satin summer dress and pump shoes! Curiously I’ve experienced this, what we would call an Indian Summer back in Ireland, the first year we came here too in 2012 so if it’s not normal at two out of the four years of being here, I’m at odds to know what is.

This year when I got the call from my mother at the end of September, it was still hitting 25 degrees on the street thermometers. But I knew it was liable to change. So my usual advice, except in the summer, is to bring layers and lots of them, long and short-sleeved tops, light cardigans and jackets and a light accessorizing scarf.

She packed as I suggested and her wardrobe worked for a while and then the temperatures took a sudden nose-dive into the single figures and we were looking out at grey skies and rain. We even had to turn on the heating. I sounded like the locals with my saying, “this is not normal for Madrid!”.  I could be in Ireland (and at least living in a house with a garden, which is on the top of my wish-list).

So a cold apartment brings on the necessity for one lovely weekend activity: rotation of the wardrobes. It’s a tricky business and practically impossible to get the timing right. With four distinct seasons, it seems to be an endless year-long quarterly cycle but I’ve learned that in transition times, to just put up with having choc-a-bloc cupboards and wardrobes, providing a choice of suitable clothes and footwear for the temperamental weather changes that occur in Indian summer/early Autumn and again in tapering Winter/beginning of Spring.

There was one change this year I wasn’t ready for though and that was a cold head. My brother warned me about it but until you experience it, you just don’t know what he’s talking about. But he’s right. Hair really does insulate your head and now that I’ve none (still), I’m really feeling the cold. Brrrr!

So, a throw-back to nighties and sleeping cap days, I took a trip to Decathlon and bought those very versatile “bragas”, which are literally just rectangular pieces of fine material sewn with a seam to make a cylinder to pop over you head and play around with to make some form of a warm, but not sweltering head covering for night. It literally translates as “knickers”.

So here I am blogging with my head knickers on, feeling cosy and rosy and slowly getting ready for the winter ahead. If there’s one thing I’ll really appreciate next year, it will be my hair again. Long, thick warm locks, which I look forward to brushing and grooming to my heart’s content. Night, night!

Octobers and Genetic Testing

Ever since Pablo, my first child was born in October, it has become one of those extra special months on my calendar. I remember in 2007, the year he was born, when finally October arrived, how my heart used to skip a beat on seeing his forecasted date of arrival of the 8th as the sell-by date on the milk cartons. He kept us all in suspense until the 13th of that month though, one of the longest 5 days wait of my life. And we’ve been celebrating every year since with themed birthday cakes and fun parties.

Then there’s Halloween. I had it buried in my calendar as one of those festivals that I wasn’t keen on remembering with any special celebration, but alas it has been unearthed from my childhood and marked excitedly every year with masks and face paint, spooky tunes and hanging apple games, evening house callings and poem recitals, pumpkins (at a push), apple cake (Barm Brack hasn’t reached the Spanish shores) and lots of fresh tasty nuts.

This year Halloween will be made extra special by the presence of my sister and her youngest son Ronan.  And we’ll be celebrating more than ghosts and goblins too!  Spilling in to the 1st of November, I’ll be ditching chemotherapy sessions (hopefully forever) out of my life and burying that bitter spirit with a bottle of the bubbly stuff.

But October of 2016 has become more booked up than ever with four chemo sessions still to complete, the usual fortnightly collection of my sick certificates, the first of my biannual revision tests and on the last day of the month, I’ll be genetically tested for alterations to the “Brackey genes”, as I affectionately call them.

I first heard about these menacing genes, correctly named BRCA 1 and BRCA 2, from the lovely girl who supervised my fourth year biochemistry practicals eighteen years ago. These genes, when altered, were just around then being discovered to play a major role in many incidences of familial breast and ovarian cancer in women. I remember listening with interest at the time but since it was not a disease that had ever affected my family at the time, that information was very swiftly shelved at the back of the top most recess of my mind, where memories of passing interests fade into darker and darker haziness.

Until the day I was told I had breast cancer and the possible genetic implications of that were mentioned. The memory of that pretty girl, who my class mate asked out on a date, reluctantly were dug up, dust blown off it and the future date of the 31st of October 2016 assigned to bring to fruition the practical reality of what was once for me just a fleeting wonder.

If anyone is familiar with Dr. Seuss’ (rather surreal) tale of “The Cat in The Hat”, you’ll know the mysterious characters who appear midway through the story, Thing One and Thing Two, running out of a closed box and running amuck up and down the corridors with kites and dresses while “mother is out”. Well they’re like Brackey 1 and Brackey 2, in their mutated forms.

When functioning properly, BRCA 1 and BRCA 2, located on chromosomes 17 and 13 respectively act as tumour suppressor genes. So the genes create proteins to autocorrect damage to its own DNA in order to prevent the formation of cancerous tumour cells, normally in the breasts or ovaries at some relatively early stage in a young woman’s life.

But when they take on the characteristics of Thing One and Thing Two, and decide to run amuck in the body, it is almost always due to an inherited mutation (spontaneous mutations in these genes caused by environmental factors are extremely rare). There are different ways that the genes can be mutated or altered, and some are more harmful than others (changes in the BRCA 1 gene being more detrimental). But only 5-10% of breast cancer cases are attributed to these mutations. The rest of the cases are caused by…well whatever (see my post on “Why Me?”).

At the end of this month, October, I’m going to be taking the initial steps to find out into which category of breast cancer cause I fall, genetic or whatever. A history of a medical nature of my greater family will be taken and stored as a family tree, then blood samples taken to be sent off for rigorous genetic analysis and the results will be presented to me at some unknown time next year.

If I test positively for any mutation in either of the BRCA genes, the most immediate consequence for me will be the removal of my other breast and ovaries as soon as possible, the prophylactic surgery, which Angelina Jolie gave a public image to in 2013.

If I test negatively, I’ll go on my merry way, continue with my hormone treatment and biannual screening tests for five years and hopefully become a cancer-free survivor statistic for many years to come.

With my familiy’s medical history as it stands today, the indicator is pointing in the direction of a negative result. To really qualify for an analysis of your BRCA gene state, there would have to be many more incidences of breast cancer in the female branch of my family tree as there currently are (and I have my mother and sister, six aunts and twenty nine female cousins!). But my age and the type of tumour that I had (invasive lobular carcinoma) may indicate some sort of genetic involvement.

So what result am I hoping for?

Well, on the one hand, a positive result would provide an explanation for my breast cancer occurring at my age, which although I’ve accepted it, a reason for it would be conclusive for me. It would also justify the removal of my other breast, which although deemed healthy now, I view it as, my oncologist called it, a “disease time bomb” (hearing those words from a professional cancer doctor are more that disconcerting).

I think it would be safer to remove my left breast, a kind of insurance policy, but since the removal of a healthy breast from women who have had a unilateral mastectomy, has not demonstrated an increase in survival rate or decreased the reoccurrence of breast cancer, doctors are reluctant to perform the prophylactic surgery, unless there’s a genetic implication.

On the other hand, whereas a positive test result would be good news for me now, it could provide a possible future legacy for my two daughters in particular and somewhat for my son, an inheritance which is paved with medical tests and screenings and futuristic decisions of an ethical nature.

The laws in Europe concerning genetic testing and applying the results to embryos and even to the unfertilized egg are changing, the result of which is in the provision of more and more leniency to couples and doctors to choose in advance the genetic make-up of a child. Already 30 families have “benefitted” from this action in Spain. So it could mean that if either Ana Maeve or Ellen tested positively for the altered BRCA genes, they could have their own eggs tested and only the “unblemished” ones harvested.

To me it sounds like taking up the role of God here on earth. And if you asked me if I’d prefer to have had breast cancer or be unborn, my reply should be obvious. Having this disease is not pleasant but it is moulding me into a stronger person, at least emotionally and spiritually.

Testing negatively won’t exactly liberate my girls from future screening either.  If your mother has had breast cancer, it is recommended to begin screening for this disease ten years younger than her age of diagnosis so my girls will inherit that legacy either way from the age of twenty nine.

The genetic testing will be an interesting end to October and the suspense of the results I will have to contain until next year. In the end, I have concluded that it doesn’t really matter whether I test negatively or positively. What will be will be. More and more I realise how little of life we can actually control.

Concerning health and illness, I think the best I can do is to educate my children from a young age to be mindful of their health and their obligations in looking after it and to allow them to see, through my actions and behavior, how having a major illness isn’t the end of the world. Life can still be looked on with a smile. We can continue to celebrate the passing of the years and seasons with joy and thanksgiving and accept the reminders and coming of the end with a hopeful peace.

To Reconstruct or Not To Reconstruct? That IS the Question.

A good bra has been a central part of my wardrobe ever since, well, I’ve needed one. And that necessity happened to coincide, more or less, with the opening of Dungarvan’s first specialized ladies lingerie shop, Helen’s Boutique. Her bras were more expensive than what had been found before in my hometown, as, in the confines of her little shop at the far end of O’ Connell street coming from Grattan Square, Helen stocked more variety of better brands.

I remember my first fitting and purchase of what seemed like a “granny bra” to me but as my mother couldn’t stress enough the importance of good support and an even better fit, in my young teenage years with my rather large dense breast, I had to sacrifice frills and lace for thick straps and underwires.

The return to Helen’s became an annual affair and gradually as my weekend and summer jobs became more lucrative, I was able to take over the funding of my own garments of breast support. It is a buying habit I continued up until the summer before last, because as I told Helen last year, I have never found another lingerie shop and proprietress to be as consistently helpful and supportive, pardon the pun! The vanilla colored bra for my wedding dress, all my maternity bras, black bras, skin-colored ones, under-wired, strapless, plain t-shirt ones to the feminine lacy kind, I’ve always gone back to buy them at Helen’s Boutique.

So now I’m in to a new bra era: the orthopedic mastectomy bra. It’s really no different from a normal bra except for the pocket it hides away in the cups to accommodate fake silicon breasts, which are easily popped in. I haven’t been able to travel back to Dungarvan yet since my mastectomy in May so I still don’t know if Helen can continue to be my “bra specialist”. In the meantime I’ve found another supplier, who is extremely friendly and accommodating and seems to stock a good selection of very stylish mastectomy bras.

So the not so humble bra remains the central all-important piece of my wardrobe.

The decision to address the “missing breast” issue with an external silicon breast, as opposed to an internal reconstructed one, has of course been entirely my own. It is a very personal decision and requires careful consideration.

When I first approached the centre, which is a separate dedicated cancer unit in the hospital where I’ve been receiving all my care and specializes in breast cancer, I became acutely aware of becoming part of a system of work. After the initial appointment with an oncologist, you are slotted in for all the staging tests. Then, you meet the gynecological surgeon, then the plastic surgeon, then the oncologist and finally the oncological radiotherapist. A whirlwind of information is presented to you in appointment slips and consultations. Once the best plan of action has been determined for your particular case of cancer, surgery first followed by chemotherapy and then radiotherapy, for example, the ball starts rolling into action very quickly.

The decision to have my breast reconstructed with an internally inserted prosthetic silicon breast under my skin was assumed to be accepted by me, I suppose by virtue of the high numbers of patients undergoing this kind of breast reconstruction regularly. And initially I didn’t give it any thought. Reconstruction, yeah, of course. Isn’t that all part of the breast cancer treatment package nowadays?

And then one morning, one of the doctors who I had to see, was delayed and I hadn’t brought anything to read. A quick root around in my bag and I found that grey sheet of paper that I had thoughtlessly crumpled up as reading to be done at some other time. It has turned out to be the paper that has determined my aesthetic fate for the foreseeable future. It was entitled, “Risk Factors of Silicon Breast Reconstruction”.

It listed amongst others, allergies, autoimmune response, muscle damage, infection, septicemia, silicon leakage and the necessity to operate every ten years to change the implant.

In retrospect, I realise these papers are informative and a legal requirement and not necessarily indicative of the reality. I assume statistically more women receive successful breast reconsctructive surgery than not. But at the time, whilst reading all the possible scenarios of how the surgery can go wrong, I became very doubtful about the reconstructive procedure as an option for me. I reached for my phone and began searching for the alternatives to breast reconstructive surgery with silicon implants. (Personally, I would have preferred if my plastic surgeon had presented these options to me himself so that a discussion could have opened up about the pros and cons of the options available. Finding out for oneself via the internet and weighing up the positives and negatives without the support of a professional seems too much like being left to your own devices.)

Well, one alternative is a different kind of reconstructive surgery, a manipulation in the body, which is more “natural” when it comes to acceptance or non-rejection of the implanted matter. This is because the reconstructed breast is “built” out of fat and muscle tissue from ones own body, either from the abdominal area or the back. There are varieties but it is generally called DIEP or TRAM flap surgery. It sounds wonderful, (especially if the fat is coming from the abdomen – hey a tummy tuck and breast augmentation all at once!!!) but the surgery time can take up to twelve hours. And it involves more than a transfer of fat and muscle. There’s blood vessels and circulation to consider too. Not such a simple procedure, I soon realized, and the down side is that the body doesn’t always accept the transferred tissue, despite coming from one’s own body.

The other alternative is not to reconstruct, to go breast free. I first read about this in the waiting room, waiting for the doctor who was delayed, in the throes of my panic about risk factors of silicon breast implants, on the website http://www.breastfree.org. This site contains information about and testimonials from women who have opted for exactly what the website name advertises, going breast free.

It didn’t take much convincing. It is the less popular choice, only 20% of women with breast cancer opt to go breast free. But there is no doubt that it is the safer option. Recovery from the mastectomy itself is easier, virtually pain-free I would testify to and shorter. And there is no question or doubt about whether the subsequent treatments for the actual cancer are compromised. They’re not.

So I chose cancer cure first, reconstruction maybe later. As it is, I’ve missed the boat on the silicon implant reconstructive surgery as that must be decided on before the mastectomy (this is because, a tissue expander has to be inserted during the surgery for removal of the breast and saline solution must be regularly injected in to the missing breast site to create an internal pocket into which the silicon implant can be inserted). I can decide on the flap surgery at a later date.

Going breast free is definitely the less pretty and more inconvenient choice. One is left with a big scar around which anything from fat to scar tissue is likely to form. The images of results of breast reconstructive surgery on the internet are quite impressive. The anxiety and conservative nature of my personality have come even more to the fore for me. And I have trust issues too, I suppose.

I’m the person who, when consulting the two gynecological surgeons for a first and then second opinion, while listening to all they had to say, I found myself examining their hands and nails! Those hands were the hands that were going to be cutting into my skin, touching my interior and sewing me back up. One surgeon had slender hands with long fingers and beautifully manicured nails. She had a presence and calmness about her that I admired. The other surgeon had short stubby hands with nails bitten down to the quick. She had a tired face and rarely smiled.

In the end it was the latter who operated on me because she was part of a system that I trusted more as an entire package. So on accepting the lady with the bitten fingernails, I found myself worrying about things like, why she had bitten nails; if she’s a nervous person, would she have had her coffee before operating on me; so, the time of my operation became an issue for me. As it turned out I was operated on mid-morning. When I was wheeled in to the operating theatre and she looked in to my eyes, smiled and asked, “everything alright?”, I felt like quizzing her on her night’s sleep, her breakfast, the number of coffees she’d had that morning, her partner, her children…

Instead I just replied with a faint half-smile, “yes, everything’s alright”. I thought, I place myself in your hands and I’ve prayed for you this morning. It’s all out of my control anyway so may God be with you.

That’s all the trust I placed in that surgeon. Now I’m not sure I could work up to that level of trust again for a twelve hour breast reconstructive surgery. I’m a fragile being with an even more fragile shell of a body.

For the time being, I prefer to focus my energy on my present image, disfigurement and all, and love it with good moisturizing and sun protection creams.  Invest in the best silicon foobs on the market and a good stylish bras. Buy flattering clothes and pretty earrings.  Exercise and feed my body with wholesome nourishing food.

And re-educate myself and my children about the importance of nurturing a beauty, the kind that shines from the inside out and transforms any face, any smile, any body type into a grace transcendental of any external image.