Written in the stars?

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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.”

Stumbling Blocks and Stepping Stones

“The difference between a stumbling block and a stepping stone is how high you raise your foot.”

“The difference between a stumbling block and a stepping stone is how high you raise your foot.”

The risk of developing breast cancer before the age of 80 is 21.1% for those with two affected relatives. Assessing my own risk is no case for Sherlock Holmes because at least five generations of women developed and then died from metastatic breast cancer before the age of 50. Wondering ‘why me?’ when I received my own diagnosis in 2012 seemed a little pointless.  A better question was when, not if and had familial breast cancer been better understood fifteen years ago, none of this might have happened. It did and I’ve learned how to accept and deal with it.

Failing to avoid breast cancer is one thing, being thwarted by genetic stumbling blocks and uninspiring statistics is quite another. My consultants say genetic aberration is responsible for the decimation of the female branch of my family tree. On that basis the obvious answer would be BRCA but as science continues to identify, breast cancer is far more complex than BRCA1 and BRCA2. I have neither of those genes.

In time scientists will discover the fault(s) in my genetic code. With luck, skill and more time they might even establish what to do about it. Until then retaining any unnecessary quantity of natural breast tissue seems akin to playing Russian roulette.. with a powerful handgun and live rounds in all six chambers. I’m not much of a gambler and I cannot change my genes however I refuse to live in fear of the century-long shadow breast cancer casts across my family. I know the choices are limited but they’re still choices and a key piece of my cancer-defence jigsaw just came into view.

On 11th March Miss M. and I have another date in the operating theatre. The final vestige of my female (physical) self will be exchanged for silicon and pig intestine over the course of around 4 hours. I  very much hope its the last in a long line of surgeries because much as I love Miss M., I have an increasingly strong aversion to hospitals. Genes permitting this will be an uneventful risk-reducing mastectomy followed by immediate reconstruction – no need to mess around with nodes, skin or chest wall.

It would be easy to regard more surgery, the recovery period, the possibility of complications and/or unwelcome discoveries as new major stumbling blocks obscuring my route to sustained wellness. I prefer to see it as a well considered life choice in circumstances that might otherwise favour cancer, not me. Deciding to have more surgery isn’t easy, it brings back memories that I hope in time to forget but right now, this is an important stepping stone.

Once the operation is over I move from living with an unacceptably high risk of developing another new breast cancer to living in the knowledge that I’ll have done everything possible to contain that risk. In doing so I improve my chances of staying cancer free. Even the tiniest of improvements is better than none at all.

A small star of wonder

There are few miracles in Cancerland. Many of today’s treatments are founded on surgeries, chemo and radio therapies that have been around for decades. The concept of mastectomy has existed for centuries, though thankfully surgical practice has improved significantly in that time. Cancer research is resource intensive, costly and for every positive advance there are many more that fail to deliver useful results.  

As a recovering cancer patient, thinking about all of this is a daunting prospect. So many race for the cure because no-one wants their life cut short by cancer. Yet the cure continues to elude us and every day there are tears and condolences as more of our number depart the human race.  This, all too often, is the stark reality of Cancerland. It makes the psychology of cancer equally as challenging as the disease itself.

Science has not given up though and for those of us affected by this odious illness, from time to time there are breakthroughs, stars of wonder that shine a ray of hope into what might otherwise be a very stark world. Since being diagnosed as HER2+ I’ve hunted down as much information as possible about the ramifications of my particular cancer subtype. I am the kind of person who needs to know what she’s up against and until recently it painted a very challenging picture. More aggressive, more difficult to treat and more prone to early metastasis are not the kind of facts I hoped to discover. Without the advent of Herceptin my consult had said our initial conversation, the “yes you have cancer” one, would have been followed by “and we’ll do as much as we can but the outlook isn’t good.”

Unable to resist the urge to undertake my own research, I quickly discovered that members of the HER2+ community seemed to be dying at an alarming rate, even if their cancer was diagnosed early and they’d undertaken aggressive forms of treatment. In 2012 a long knife skewered my heart. The “yes it’s cancer” part was unpleasant but it wasn’t a complete shock. The HER2+ part was a twist of the knife, unknown territory which soon became a gargantuan challenge. Though my treatment is over my quest for research did not subside and as we approach Christmas 2014, the season of peace and goodwill,  a small star of wonder shines for those who are HER2+.

The survival benefits of Herceptin have been assessed in long term research, the first of its kind because Herceptin is one of a handful of cancer treatments that haven’t been around long enough to know exactly what the outcomes might be. Earlier this month the Journal of Clinical Oncology published a study that found Herceptin improved 10-year survival from 75 percent with chemotherapy alone to 84 percent with combination therapy – chemo plus Herceptin. The results also established continued improvement of disease free survival – the addition of Herceptin has seen 10-year disease free survival rates increase from 62 percent to 74 percent. As someone affected by HER2 these increases in 10 year survival and 10 year disease free survival are encouraging. They begin to shine a ray of hope in a landscape where hope is desperately needed – 74% isn’t good enough in my opinion but it sure as hell beats less than two-thirds.

It saddens me that, for my friends with metastatic breast cancer, everyone who is stage four at diagnosis, anyone who isn’t HER2+ and all those living in the wrong geography or an insufficient income bracket this discovery offers no comfort. It’s a small breakthrough with relevance for 15-20% of those with breast cancer. I’m part of that population yet there are no guarantees it will be of help to me either. Breast cancer is like that, no-one knows which straw they’ve drawn and reoccurrences can happen well beyond the 5 year “all clear” period.

Uncertainty and unpredictability are part of the fabric of Cancerland and somehow we learn to adapt to that, to cope with an outlook that’s permanently cloudy, but even for the most optimistic among us this becomes psychologically wearing. Coping is marginally easier if the cloudy outlook is perforated by at least one small star of wonder every few years – it seems that Herceptin may well be that kind of star.

 I

In about eight hundred days…

imageThe here and now may not be perfect but its an altogether better place than where I was around 800 days ago. Eight hundred sounds like a lot when you add it up in days, but in years it’s less than three. Just a tiny fraction of the longevity most of us hope to achieve in our lifetimes.

Long before my tussle with cancer began I developed a trait that has proven increasingly useful, particularly during the most challenging four hundred of the eight hundred day mountain climb I’ve taken on in the last few years. Though I haven’t consciously cultivated it, and on occasion even considered it problematic, looking back I can see just how helpful it’s been when the world seemed to be coming undone. Some might call it mindfulness or being in the present, others might say its selective amnesia. Whatever it is and however it happens, closing down frightening, painful or just plain bad memories so they no longer invade daily thoughts or conjure negative emotions is something I now consider a blessing. A body marred by the evidence of physical surgery and some serious chemical bombardment doesn’t need to retain a matching set of psychological scars.

As far as I can tell being anchored in the past makes it impossible to live in the present or imagine anything might have the potential to be different in future. Like many others dealing with cancer, my future is far from guaranteed but being permanently bonded to the fear, confusion and isolation that come with a cancer diagnosis isn’t something I want to sustain. Taking the lessons from past experiences is important, constantly reliving them isn’t. Closing the door on negative memories and the emotions that went along with them has helped me remain relatively calm and stable during some very unstable situations.

It’s about two and a half years down the line now and small signs of normality continue to emerge. A visit to the oncologist last week resulted in confirmation that all seems well so from now on we move to annual rather than six-monthly check ups. There are some things that won’t improve or mend – ankles, knees and hearing – but that’s fine, I can get by with them as they are. The same isn’t true of cancer and though I like my oncologist, I like the thought of a year away from him much more. Being able to go out in public without looking like a medical experiment, walking like a very senior citizen (well over 100) or having what appears to be a constant cold are all welcome steps forward too. They’re small steps but that doesn’t matter because they all contribute to renewed invisibility – it’s hard for chemo patients to blend in! – improving agility and a general sense that slowly but surely, health is beginning to return.

Limits

Bideford Bay

Bideford Bay

My trip along the Tarka Trail exceeded a few limits. It would’ve been easier to turn around at Instow but I didn’t because I inherited the never give up and always do your best genes. They’ve served me very well in my life to date and hopefully they’ll continue to do so.

The journey provided some valuable insight into what I’m physically capable of, how far I can push myself and what the consequences of over-exertion might mean. My philosophy on consequences is “so long as they’re survivable they’re manageable.” That’s not to say they aren’t painful as hell but I’m still here so it’s a case of working them through 🙂 .

I had to be very gentle with myself for a whole day and took more NSAID’s than I’d like to keep the pain in check. I have a strong aversion to drugs unless absolutely necessary and though I wanted to tough it out, I knew that would mean taking more than one day to recover.  I traded an extra day’s activity for  few pills; I’m not proud of that fact but it’s part of managing the consequences. Paying attention to the most tender spots highlighted the trouble points as right side: knuckles, wrist, elbow, knee, ankle, and left side: hip, elbow and knee. They’re the places that gave cause for concern when I was undergoing active treatment but there are no new hotspots which can only be a good thing.

The benefits of getting out there and exceeding a few limits by far outweighed the consequences. I saw some beautiful places that are inaccessible by road, spent a whole day outside in the fresh air and captured a few nice photos of snowy egrets, a curlew, some oyster catchers and possibly a snipe. I also saw a whole host of other wildlife including more dragonflies and butterflies than I’ve seen for ages, some brilliant pink sweet peas and pretty little vetches. I wasn’t confined to an office, a car or a house, didn’t need to watch the clock and could be as sociable (or not) as I liked.

Knowing our limits doesn’t mean we have to be constrained. Now I know how far is too far I can adjust accordingly – push up to the boundary and gradually try to extend it over time. I’m fairly sure with some ongoing effort, continued determination and the help of NSAID’s when required I’ll be able to go further and regain the stamina cancer treatment took away. Although it will be a small victory, when the day comes it will be a victory worth celebrating because the whole cancer thing wrought more havoc than can possibly be imagined.

It’s true that the effortless option has never really been my path of choice and as a result I’ve spent 40-odd years working my socks off. In doing so I learnt that without giving things a go, there’s no way to establish what might be possible. Life doesn’t always turn out exactly as we’d like yet we can still achieve more than might reasonably be expected if we give it a go and refuse to accept there are limits. I’m not going to enter myself for the New York marathon but I’m not being confined to the 100 meters either 🙂

 

Shatterproof

It’s just over two years since cancer darkened my doorstep, turned my world upside down and ripped away some irreplaceable parts of my life.   The body I live in is not the one I grew up with, the scars I carry aren’t restricted to my chest and my days are all a little less carefree than they used to be. Cancer is cunning so ongoing vigilance is unavoidable. Vigilance means thinking about it, checking for it, watching, listening, monitoring, observing. The last thing a cancer patient wants to do is think about cancer, the sensible thing is to remain forever aware.

Recently I returned for a follow-up mammogram, part of standard cancer patient after care. (According to NICE guidelines I should be offered an MRI – so far that hasn’t been forthcoming and doubtless it’s all down to cost). The mammogram result came through earlier this week with a letter that says “there were no signs of abnormality which is obviously reassuring news.” I struggle to get excited about it or breathe even the smallest sigh of relief because this news isn’t completely reassuring. I had a false-negative result before and a piece of paper stating no sign of abnormality could so easily have sealed my fate. Fortunately I favoured instincts over x-rays on that occasion, a decision that almost certainly added a few years to my life.

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Its only now, a while down the line, that I can look back with some clarity and say the last two years have been  physically, emotionally and psychologically tough. The profound uncertainties, constant ambiguity, twists and turns of every medical procedure all the while never quite knowing if the picture was complete and true. The disappearing acts, privation and injustices, because a broken spirit is, of course, the ideal accompaniment for a broken body and traumatised mind. The toll of treatment, the obvious and not so obvious impairments and the side-effects that are permanent not temporary. The maelstrom raging over the last couple of years might have proven all-consuming, it’s  brutality, ferocity and relentlessness shattering mind, body and spirit into a kaleidoscope of jagged shards each too small and uneven to form anything other than an unsightly mess.

I’ve learnt a good deal through this tumult of experiences. The instability, nihilism, dispossession and  separateness. The labels help paint an accurate representation of a time that rendered more chaos and confusion than any other in my life. Yet I’m here and they’re just labels. They summarise a point in time but they are not me. . .    It seems unlikely anyone could endure a period like this without being a tiny bit broken as a result, but this damage doesn’t have to be irreparable. I will always be incomplete, imperfect and scarred and in spite of those things I’ve learnt what it means to be unrelenting,  intrepid and shatterproof.

 

Coming of Age

It’s my son’s twenty-first birthday next week and I can hardly believe the years have passed so swiftly. He arrived exactly on his due date and has quietly filled my heart with joy ever since. It’s natural for a mother to feel proud of her son but I’m especially proud of him because his life to date has been far from straightforward and the last few years have been particularly tough for us both.  Years that should’ve been fun and carefree for him were marred by my cancer treatment. He was then diagnosed with anxiety and depression but we both know it had been wrapping its arms around him for several years. I suspect my illness played a significant role in tipping that delicate balance and the thought rests heavy on my soul.

Slowly but surely we are both reconfiguring our lives, learning to live with heartache, uncertainty and confusion safe in the knowledge that whatever happens we’ll find a way through. We know we can’t make up for the carefree years that were stolen away so instead we’re aiming to make 21 extra special, starting from today.

A week of celebrations begins with cake, candles and presents in advance of his actual birthday. It’s the first year that he’s been able to open anything early and we decided to bring this part of the festivities forward because he and I are going away for a few days next week. Carrying everything to London and back would be logistically difficult. Although 21 isn’t technically the year of coming of age (voting and alcohol are both legal from 18) it’s still an important milestone.

When he was 18 I put together an A – Z photo album of words and pictures representing who he is and what he loves.  There were other presents that year but the photo album is the one he treasures most. This year I’ve been busy researching all the events of 1993 as well as occurrences that took place on the day of his birthday over the course of the last 21 years.  This task has been made much easier through the wonders of the interweb! Having found a host of 1993 events plus a notable occurrence on each of his birthday’s from 1993 to 2013, I’ve turned them into illustrations – cartoons with a snippet of information about the event – to make a unique present he can look back on in years to come.  There are other presents too but I’m hoping this one will join the photo album among his favourites.

Our trip to London is the first time we’ve been away together for far too long. He loves the hustle and bustle, travelling by tube, street performers in Covent Garden, the glazed ducks and bright orange squid hanging in the windows of China Town’s restaurants, the smell (and taste) of all that Chinese food. He also loves the theatre so this visit includes a couple of surprise West End shows which are sure to be a lot of fun. Both productions will have us singing like song larks for the rest of the week so by the time next weekend arrives we’ll be hoarse, in serious danger of annoying anyone in earshot, or both!

I’m glad we’ve been able to secure this time together, that nothing else has impinged on it, that we are both in reasonably good health and can go away for a few days to create some new, happier memories for his coming of age.

(These pictures were taken last weekend. He played for over 5 hours in a charity football tournament with all the proceeds going to St. Peter’s Hospice and raised over £1000. Another good reason for me to be proud of him 🙂 ).