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

The Oncologist

Tomorrow I’m heading back to see the oncologist.  A quick recap: he is studious, often serious and I was told some people find him rather terse. He also came highly recommended on the basis I could cope with a scientist who holds a passion for his subject, has considerable clinical trials expertise and presents the facts in a sans-sugar-coating, say-it-as-it-is kind of way.  It’s true he wouldn’t be everyone’s cup of tea because small talk and social pleasantries aren’t his thing. I knew I could live without those but the same could not be said for a well-constructed third generation treatment regimen designed to tackle very aggressive HER2+ breast cancer.

When I was in active treatment I made it my mission to find some way to make the oncologist laugh every time I saw him.  Despite the various cancer shenanigans and associated torments I managed to retain at least a smidgen of my naturally playful, sometimes mischievous (in a harmless kind of way) spirit. So tomorrow I’ll be in his office finding another way to make the man who averts death smile and laugh because let’s face it, 12 hours a day 5 days a week managing various forms of cancer is hardly fun, even if your success rate falls in the upper quartile.

I haven’t been back to the hospital for some time now and if it weren’t for the follow-ups I’d avoid going back there at all costs.  It’s the place where my life switched from relatively stable to completely FUBAR in a matter of moments. It’s the place I associate with a tranche of memories I’d happily erase if permanent amnesia happened to be available in tablet form. It’s a place where the staff are brilliant, my treatment was excellent and as far as I know all traces of the mutant cells terrorising my body were eradicated. Unfortunately it will always be the place where cancer and me were forced to become far too familiar with one another. That acquaintance lasted much longer and caused far more damage than any of us is led to believe so I might just have to strangle the next person who says breast cancer is an easy cancer, the best kind of cancer or anything that remotely infers treatment and recovery is a walk in the park. Oops… I lost my playful spirit for a moment there.

Thankfully my oncologist chose to be an oncologist instead of an actuary, a computer programmer or an astrophysicist. For that I will be eternally grateful. For cancer I will not.

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.

 

Back in the waiting room

This week is busy. For the first time in several months I have two hospital appointments in the space of a couple of days. Yesterday’s appointment was the mammogram. Thirteen months have passed since the mammogram that couldn’t find a 2cm lump just 2mm away from breaking through my skin. Eighteen months have elapsed since the regular mammogram that gave the initial false-negative result at the beginning of 2012.  My experience means I have little faith in mammograms; I think I’m still much more likely to detect any future anomalies myself but after so much treatment I hope the eventuality never arises.

I thought I might be apprehensive about yesterday’s hospital visit but I wasn’t. Dispassionate might be a better description of my thoughts and feelings on the subject. I’ve moved beyond the pointless worrying that accompanies any form of diagnostic imaging because it’s wholly futile. Things will either be OK or they won’t. If they’re OK I continue to live a reasonably normal life. If they’re not OK I already know what happens next.  The radiographer told me she couldn’t see anything that looked to be of concern but the formal result will be with Miss M in a few weeks. Waiting is something else I’ve become accustomed to – the result will either be OK or it won’t and whatever it is, I have no power to change it.  This is the reality people who’ve been diagnosed with breast cancer live with for the rest of their lives; the carpet can be pulled from under their feet again at any point in time.  The experience has altered my perception of many things, made me much clearer about how I lead my life and where I spend my time.

Tomorrow is the final blast of herceptin, the wonder drug for people with Her2 positive cancer. Prior to herceptin disease free and overall survival rates for this kind of cancer were some of the worst; few people made it beyond the 5 year follow-up period. Herceptin is a breeze for many but that hasn’t been my experience and no-one can tell me how long the side effects will last or if they’ll completely resolve over time. The joint pain and immobility have been of greatest concern because these side effects impinge on day-to-day life. Weight gain and the inability to lose even a pound when sticking rigidly to 1200 calories a day is frustrating.  Overall though herceptin is a good thing for those whose cancers are Her2 positive, it has proven survival benefits.

3D Dual Colour Super Resolution Microscopy wit...

3D Dual Colour Super Resolution Microscopy with Her2 and Her3 in breast cells, standard dyes: Alexa 488, Alexa 568 LIMON (Photo credit: Wikipedia)

There are a few remnants of what happened last year scattered throughout my body. The scars and fakery are the most obvious as well as my shorter than pixie-cut hair which is still thinner at the front than I’d like. The early menopause that has, as far as I can tell, gone through the hormone deprivation stage and all it entails leaving few after-effects except the future potential for osteoporosis. Two toes on my right foot have subungual haematomas, one is painful the other isn’t, and all of my fingernails have onycholysis (detachment of the nail from the nail bed).  At some point I expect all the affected nails to part company with me but for now they’re hanging on.  An irritable gut that now appears to have a mind of its own irrespective of what I eat, fluid retention and inflexible joints that make me move like a 90-year-old.  Surviving cancer is not without consequences but surviving is still the preferred outcome.

After tomorrow I’ll be in the ultimate waiting room, the one that takes 5 years to get out of.  Hospital visits will be the exception rather than the norm (I hope) during that period, aside from the additional surgeries I’ve elected to have. Shortly the evidence of my skirmish with cancer will be barely noticeable, with luck my stamina and fitness will return to their pre-treatment levels and my clothes will fit again! Being back in the waiting room has no hold over me anymore.  Life is beckoning and I don’t intend to waste it on things I have little opportunity to influence.

Maybe I won’t try getting toast out with a fork…

My son has introduced me to a new iPad game called “Dumb Ways To Die.” He warned that it’s both silly and addictive.  I think he’s probably right.

As someone living with the ongoing threat of cancer I’d already thought of some dumb ways to die. For example metastasis, febrile neutropenia, allergic reaction to Herceptin, complications arising during chemotherapy, congestive heart failure due to Herceptin and anthracyclines, becoming depressed enough to jump from something high up – multi-story car park, suspension bridge, cliff edge etc., failing to awaken from surgery, embolism, organ failure or haemorrhage.  There’s even development of a second kind of cancer, typically some form of leukaemia, as a result of the chemo used to treat the first… That really would be ironic. As you can see, I have quite an active imagination when it comes to facing the  challenges that cancer and its treatment make all too real.

The challenge in the Dumb Ways to Die game is to keep your characters alive. Not dissimilar to the paths you have to take when faced with a cancer diagnosis. Unlike death caused by cancer, the Dumb Ways to die folks have some novel ways of shaking off their mortal coil. Some need to avoid oncoming trains, some need to keep their aircraft flying, another needs to put mustard on a hotdog so his hungry pet rattlesnake eats that instead of biting him on the eye (ouch!) and another has to be protected from angry wasps.  It’s a very silly game and so far I’m not very good at it although I consistently manage to avoid opening the door to a psychopath.  Being attacked by piranhas is another story, especially if there are more than half a dozen.

image

A psychopath was one of the few things I didn’t imagine killing me when I embarked on my tango with cancer. On reflection I was a little remiss to neglect that option because although I didn’t run into one of those I did encounter a sociopath. The experience was far from pleasant. Unfortunately sociopaths can pass themselves off as normal members of society and often end up in positions of power because they use their charm and well-developed manipulation skills to fool others into giving them what they want.  Sociopaths have no real emotions, can lie shamelessly, do not feel guilt or remorse and will do whatever it takes to achieve their aims.  They are often described as narcissistic, grandiose, charming and authoritarian.

Fortunately I’m no longer impacted by the sociopath and can concentrate on getting my life back on track once my cancer treatment is finished.  I will always have some of the original dumb ways to die in the back of my mind – I think that’s probably unavoidable once you’ve been through the cancer experience and endured treatment. However, I can cross off chemotherapy related incidents as far as I’m aware, at least in the short-term.

I will also refrain from setting my hair on fire (its only just growing back), eating anything thats out of date and will fervently avoid leveraging toast out of the toaster with a fork in future. I don’t feel the need to add those options to my already extensive list of cancer-related dumb ways to die!

 

  • Dumb Ways to Die – Protect Your Private Parts From Piranhas [iOS Review] (thegamerwithkids.com)
  • Understanding the Sociopath: Cause, Motivation, Relationships  http://www.psychologytoday.com/blog/insight-is-2020/201304/understanding-the-sociopath-cause-motivation-relationship
  • The Sociopath in the Office Next Door. http://www.forbes.com/2010/11/19/sociopath-boss-work-forbes-woman-leadership-office-evil.html

 

Keep breathing slowly

P1000859

Tomorrow I’m back in chemo camp. Not, I hasten to add, for more chemo ( I’ve done that and won’t be doing it again).  Tomorrow I’m back to attempt more herceptin following a break of almost 5 weeks because my body retained so much fluid, especially in my joints, that I couldn’t use my hands or walk for more than a few yards.  Dr C has already told me there are no guarantees, pushing ahead with the herceptin could make the joints much worse and he doesn’t know if or when it will resolve. Decisions, decisions. If I’m going to die before for my three score years and ten, and the possibility is real, then I may as well get my money’s worth and have the experience of rheumatism even though rheumatic colicky joint pain is not the problem.

Today has been stressful which goes some way towards my ‘you know what, I’m not bothered any more’ attitude. Totally unnecessary issues came up but they were stressful all the same so much so that I’ve  barely had time to think about tomorrow.  It’s a story for another post or maybe a whole series of books if I get the time.

By now I should be getting slightly twitchy about tomorrow. Instead I’m feeling like the photo of Kingswear in this post – lots going on but the water looks pretty still. The vein issue will no doubt rear its ugly head and three of the four nurses avoid the job of sticking a cannula into me because its so difficult for them (and me.)  The herceptin holiday means we also have to go back through the loading dose procedure because herceptin looks more meek and mild than chemo but in reality it’s quite a tough little cocktail and is known to cause severe allergic reactions. The range of allergic reactions includes death.

Maybe when you’ve been through this stuff for months on end your attitude changes. A year ago I definitely wouldn’t have been blase about any drug that came with hazard warnings, the need for an oncologist to be present in the department and an all day stay in hospital. Now I don’t see the point in worrying about it. Some day the reaper will come for me and that’s that. It would be better if it wasn’t tomorrow because I haven’t got all my affairs in order and chemobrain means that will take some effort; there are also a lot of folks I’d like the chance to say goodbye to. However this whole thing has shown me that although death is final,  it is not the worst thing I’ve had to face in my life.

 

 

 

 

 

Stuck in a moment

This song by U2 has been playing in my head for days now.

Songs often come to me when there’s a lot on my mind.    It’s funny that our brains can drag things out from the depths of our memories at times when the messages within them might have special meaning. It’s especially funny how my little brain still manages to process melodies and the accompanying lyrics from a multitude of songs when many of my cognitive functions have been hammered into non-existence over the past 9 months all courtesy of you know what.

The sun is attempting to make an appearance today and in spite of my malfunctioning joints I’m going out into the garden to plant some flowers.  I love flowers especially old-fashioned varieties like forget-me-nots, red-hot pokers, bluebells, grannies bonnets and foxgloves.

In a few weeks the flowers will hopefully attract butterflies and bees so there’ll be plenty of colour, life and beauty in my garden following a long, cold and particularly gloomy winter.

I’ll be singing along with U2 while I’m out there messing about in the mud for a few hours.  If you’d like to sing along with me here are the lyrics…

 

I’m not afraid of anything in this world
There’s nothing you can throw at me that I haven’t already heard
I’m just trying to find a decent melody
A song that I can sing in my own company

I never thought you were a fool
But darling, look at you
You gotta stand up straight, carry your own weight
These tears are going nowhere, baby

You’ve got to get yourself together
You’ve got stuck in a moment and now you can’t get out of it
Don’t say that later will be better now you’re stuck in a moment
And you can’t get out of it

I will not forsake, the colours that you bring
But the nights you filled with fireworks
They left you with nothing
I am still enchanted by the light you brought to me
I still listen through your ears, and through your eyes I can see

And you are such a fool
To worry like you do
I know it’s tough, and you can never get enough
Of what you don’t really need now… my oh my

You’ve got to get yourself together
You’ve got stuck in a moment and now you can’t get out of it
Oh love look at you now
You’ve got yourself stuck in a moment and now you can’t get out of it

I was unconscious, half asleep
The water is warm till you discover how deep…
I wasn’t jumping… for me it was a fall
It’s a long way down to nothing at all

You’ve got to get yourself together
You’ve got stuck in a moment and now you can’t get out of it
Don’t say that later will be better now
You’re stuck in a moment and you can’t get out of it

And if the night runs over
And if the day won’t last
And if our way should falter
Along the stony pass

And if the night runs over
And if the day won’t last
And if your way should falter
Along the stony pass
It’s just a moment
This time will pass