Light follows darkness: unimagined experiences, unexpected ways to be heard.

Though a little neglected in recent years this blog continues to occupy my thoughts and its purpose, to share information about the experience of breast cancer and the things a HER2+ diagnosis entailed hasn’t faded.

When I began writing everything I read suggested the outlook for people who are HER2+ remained doubtful. Despite best efforts to think otherwise, I sometimes doubted I’d see the 2020’s. Hope and doubt coexist a little more regularly these days but being carefree isn’t something I imagine very often.

Light follows darkness though and part way through my training I’m already working with people who have cancer. This path, from patient to advocate and more recently as advocate and carer, was unintentional yet somehow feels right. A way of putting unwanted experiences to use, to give something back for as long as I’m able.

It brings other unexpected opportunities too, to research and attempt to write formally about the experience of breast cancer patients as part of my academic nursing development. Over the coming months I’ll be looking at themes that come up in breast cancer blogs and hope to identify topics that rarely gain attention in mainstream media or formal writing but impact us greatly as breast cancer patients before, during or when we find ourselves beyond the realms of current treatments and what they offer for us.

Please let me know if you’d like me to read your blog, specific blog posts or if you have themes you think it would be useful to explore. I am new to this kind of research and would like to raise our voice, as well as shedding light on the things that affect us greatly but still fail to receive the attention they deserve.

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 🙂

 

Cardinal virtues, cancer and justice. It just is.

 

How often do we hear children say “that’s not fair!”  How many times have you asked why you or someone you consider a ‘good’ person was dealt the worst hand in this game called life?    The truth is…. life isn’t fair.  There’s little justice.  It just is.

Today’s reflection takes the cardinal virtue of justice – or it just is – as its theme. Buckle up, this could be interesting/thought-provoking/nonsense. Read and decide for yourselves.

Justice: Noun – just behaviour or treatment; the quality of being fair and reasonable.

Cancer doesn’t discriminate, it will happily strike the fittest, slimmest, most health conscious people if they’re genetically predisposed or exposed to certain environmental factors. The process of this disease is extremely complex.  Justice plays no part in cancer development, treatment or the long-term outlook. It just is and whichever hand we’re dealt, we have to make the best of it.  I could witter on about it forever; instead I’ll draw your attention to three points for contemplation – treatment, employment and family/friends.

Treatment:  We have a National Health Service in England. You might think it’s free; it isn’t. It’s partially funded by National Insurance contributions deducted from salaries at source. Most people also pay for prescription medicines, dental treatment, opticians and anything to do with hearing.  Cancer patients are exempt from prescription charges which seems fair and reasonable however we have to pay for dental work, sight and hearing aids in spite of the fact that some cancer treatments affect eyesight, damage hearing and teeth.

Another common misconception is that the NHS prescribes the most effective drugs, e.g. to manage side-effects. This is a fallacy.  The NHS prescribes on affordability; it often means cheap substitute drugs.  NHS administrators balancing the books assume this is OK because substitutes are designed to do broadly the same thing as their more effective (and expensive) counterparts.   However, cancer patients and medics will tell you substitute drugs don’t always work as well. They often cause unnecessary suffering and avoidable hospital admissions (that prove more costly than the more effective drugs), it’s more stressful for the patient and adds to the workload of our overstretched doctors and nurses.

Look at the words – unnecessary, avoidable, suffering, stressful and overstretched.  Now associate them with the justice – the quality of being fair and reasonable. It doesn’t make much sense does it?

In the US things are more confusing. I’d love £1 for every post I’ve read from someone fighting an insurer over the scans, medicines and follow-ups covered by their policy. The words fair and reasonable come to mind until I remember the mantra life isn’t fair.  I used to work in insurance; insurance companies want to make money, they don’t care that my US friends are fighting for their lives and need the best treatment to enable their survival (or provide a comfortable journey to the end of life).   Those without insurance are in an even more difficult situation; the most needy people treated in the poorest way by a civilised society.  Justice? No. It just is.

In low-resource countries the situation is desperate.  Fatality rates are highest in these countries because most have resource constraints that limit the capacity for detection, diagnosis and treatment.   In these countries women most commonly present with node positive locally advanced breast cancers; chemotherapy is required to treat them and often the underlying resources/infrastructure are absent.  When chemotherapy isn’t available these people only receive palliative care. Once again the poorest people are dealt the worst hand in the game. It doesn’t have to be this way; it just is.

Employment:  Scorchy over at The Sarcastic Boob wrote an excellent piece titled Professional Identity in Crisis.  Times have changed; for many women their careers are an integral part of their life so exclusion from the workplace for any reason (could be employer incompetence, failure to understand or appreciate what a person with cancer wants/needs during treatment, the effects of treatment itself or issues created by metastasis)  can have devastating consequences.  Continued social interaction during cancer treatment and the survival benefits of support networks at home, at work and in the community are well documented.  Eating healthily, avoiding processed foods and buying organic where possible is significantly more expensive than supermarket own brands.  Purchasing drugs that aren’t provided by the NHS or an insurer is very costly.  Work is important to the cancer patient for many reasons. Ultimately it’s important in a practical sense; cancer patients need money to live. Putting them on the bread-line or into the benefits system (where one exists) makes survival a thousand times more difficult.  Inducing stress by causing unnecessary worry is a proven route to metastasis!

Sadly too few employers understand cancer, too few seek to establish what the cancer patient wants to do and too few make adjustments that would enable the individual to balance work, treatment and the benefits that stable employment and sustained social contact can bring.   Too few employers think about the real issue a cancer patient is facing.

The real issue is life or death and I defy anyone facing the uncertainty of death to deny that compassion, just behaviour and treatment matters to them. It’s one of the only things that matter when everything else is sliding out of reach.

 Family and Friends:   Justice, family and friends is a conundrum.  Cancer is tough.  It’s tough on the patient but it’s equally tough on family and friends. They don’t have to go through treatment or side-effects but they share many of the same worries. Will the treatment work? Will the cancer come back? Will s/he die?   As with all traumatic life events some of us are better equipped for them others. It doesn’t mean some people are good while others are bad, we just have different approaches to difficult situations.

What many cancer patients need more than anything is a sense of certainty. Cancer throws everything up in the air and makes life very uncertain.  Family and friends are well-placed to generate certainty by remaining present, offering support, listening and providing a shoulder to cry on.    As the family or friend of a cancer patient, this can be difficult; fear isn’t reserved for the patient alone. Patients have no choice, they have to find a way around, over or through their fears.  Family and friends have more choices; they can choose to overcome their fears and be staunch supporters of the patient. Or they can be consumed by fear and chose to hide away.  I understand the second choice, fear and flight go hand-in-hand but I couldn’t do it myself.  I couldn’t abandon a family member or friend in need.  I understand some things look too hard, too painful and too frightening to endure and that might be true – but you don’t know for sure unless you try.

When family or friends decide it’s all too much, cancer patients have a variety of reactions. Sometimes they blame themselves for the impact they have on other people when dealing with a disease they didn’t ask for and have very little control over.  On occasion they may get angry and ask ‘how could s/he disappear at a time like this?’  Often they just get sad; the absence of dear ones who’ve been ever-present until cancer came a-calling is an emotional blow.

Fortunately I haven’t had this experience but many of my friends have and it’s hurt them deeply, far more deeply that the cancer itself.

Justice, treatment, employment, family and friends.  It’s not for me to tell other people how to behave but I pose a question – to health providers, insurers, administrators, employers, family members and friends….

Imagine you’ve been diagnosed with cancer.  Today, as you hear the words “you have cancer,” your whole world begins to fall apart.  Everything you thought you knew, all the plans you had, your hopes and dreams, they’ve all dissolved in front of your eyes.  You’ll feel this way tomorrow and the next day and the day after that.

It just is and you’re going to have to make the best of the hand you’ve been dealt.…. somehow.

So ask  yourself how you’ll assess justice, the quality of being fair and reasonable, when you can’t get the treatment/drugs you need, when your employer fails to understand the importance of your career or your need to work.  If that’s not enough, some of the people you hold so close to your heart just disappeared from your life in a flash.

Are you wondering what just happened to you? And what they hell you’re going to do about it?

Justice: a nice concept crying out for the practice of being fair and reasonable.

It just is.

 

Poker

Poker (Photo credit: maorix) Life isn’t fair so we have to play the hand we’re dealt.

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Heavenly graces, cardinal virtues, cancer and Christmas.

christmas paint

christmas paint (Photo credit: cassie_bedfordgolf)

 

Yesterday was busy as Christmas Day always seems to be. Cooking, cooking and more cooking followed by cleaning up. I didn’t mind because the meal was very much enjoyed, even by my son who employs the ‘avoid vegetables at all costs’ policy. Time spent in the kitchen offered an opportunity to reflect on the past year and  consider what it’s like spending Christmas with cancer treatment as my ever-present companion.

 

The words ‘faith, hope and charity’ came to mind as I checked the turkey’s progress.  I’m agnostic and although those words are described by some as the heavenly graces, to me they’re just words with some significant meaning.  Having contemplated the heavenly graces I also mulled over cardinal virtues; fortitude, justice, prudence and temperance.  The Greek philosophers identified these many, many years ago and philosophy was one of my recent topics of study so it’s no surprise the cardinal virtues joined forces with faith, hope and charity as I prepared our carrots and parsnips.

 

These seven words –  faith, hope, charity, fortitude, justice, prudence and temperance are as good as any to describe the experience of cancer at Christmas, the dirty mark it left on 2012 and my attempts to erase it.  I like things to be relatively clean and tidy, not perfect but passable.  Cancer doesn’t fit that bill:

 

CleanAdverb – so as to be free from dirt, marks, or unwanted matter.                   Adjective – free from irregularities, having a smooth edge or surface.

 

Tidy: Verb – bring order to, arrange neatly.  Adjective – arranged neatly and in order.

 

I’m no longer free from marks or irregularities nor am I arranged neatly and in order.  My treatment plan is designed to eradicate unwanted matter but there are no guarantees. I aim to be passable in 2013 hence my theme for today is Faith. 

 

Detecting that there’s something wrong with our bodies calls for faith.  Faith that we’ve a relatively good idea about what we look and feel like, what’s normal and abnormal. Without this underlying faith I’d have faced a heap more trouble this year.  The trouble I found myself in was trouble enough.   Unlike crustaceans and salamanders we can’t regenerate body parts and we can’t operate on ourselves so we have to place our faith in the medical profession; sometimes its a challenge.  I received a clean bill of health in January 2012. What if I’d ignored the inner voice whispering “there’s something wrong” until  January 2013?  It’s almost too scary to contemplate.

 

Fortunately I trusted my instincts and returned to the medics; unfortunately they confirmed my concerns. Diagnosis is one thing but treatment is quite another.  There’s so much to weigh-up at a time when rational thought can be displaced by disbelief.  More faith was required – to remain positive, chose the optimal treatment pathway, believe surgery and harsh chemotherapy would do the job (without killing me in the process or disabling me for the rest of my life).

 

These are big decisions that medical science can inform but as yet no-one is equipped to fully underwrite.  Alone with the knowledge that any choice I made would be life-changing called for a leap of faith. The maze that is cancer and its treatment meant I’d either find myself on solid ground or I’d need to learn to fly PDQ.

 

Cancer treatment, particularly chemotherapy, is challenging.  Being confined to a physical body undergoing chemical warfare and death at a multi-cellular level on a regular basis isn’t an everyday experience (thank goodness).  Things fall off – hair, eyelashes, nails; other things stop functioning – healing processes, skin renewal, the immune system.  I learned how to fly to combat an extended period of imprisonment in a body I barely recognised that’s ill-equipped to do the things I want to do.  Flying combines a good deal of faith that in time, things will repair themselves with the knowledge that I can think myself free.  Free from needles, free from chemicals, free from hospitals, physical impairments and pain.  My physical body may well be dying at a rapid pace on a regular basis but it doesn’t mean my spirit has to follow suit.  It can be anywhere it wants to be.

 

Christmas with cancer has been quite different to other Christmases. Socialising in crowded places is off-limits and visiting or receiving visitors is only possible if people are fit and well.  I’m happy in my own company but I never imagined being a hermit and this Christmas is proving unusually reclusive due to the need to avoid germs. Waking on Christmas morning in the knowledge that I’d be back at chemo camp in three days, on steroids again within 48 hours and doing a human pincushion impression several times before the week was through also put a slightly different complexion on things.  It would have been easy to dwell on  these less than festive thoughts but they’d have stolen the spirit of Christmas.  I set them aside, had faith that I could ignore them and went about making it an enjoyable day for the sake of my family.  My mission was accomplished  – they enjoyed it and that’s all I asked, with the help of a little faith.

In spite of this year’s difficulties, having faith that I could overcome adversity and in the abilities of those who care for me has enabled me to jump some significant hurdles while remaining relatively unscathed.

Tomorrow I’ll reflect with justice as my theme.