Category Archives: Cancer and recovery

On fear, finding new oceans and fortitude

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Fear (1)

Choice, or otherwise, fear lives in us all. When once encountered, fear is a remarkably persistent character, slipping around our shoulders, yapping at our ankles, lingering in the quiet still hours, keeping us wakeful when we’re desperate to sleep.

It may be fear of serious illness, of facing an uncertain future, of the end of a long term relationship, or fear in some insidious guise, free-floating,  drifting to suit a mood and context. Life is uncertain and fragile. We do not have to look far to find suffering, anguish, unhappiness, or witness troubled lives racing fast to perilous outcomes.

Fear is defined as ‘an unpleasant emotion, caused by the threat of danger, pain or harm.’ In old Saxon forms of the verb, fear becomes ‘faron’ and translates as ‘to lie in wait.’ Old Norse terminology echoes this definition, with ‘faera’, ‘to taunt’. It does seem that fear taunts us, goads us into behaviour we would prefer not to display

Walking to a hospital appointment on a sharp, frost-laden day, watching the morning sun rise and beat out the blue, I was lost in a reverie, contemplating fear. I have known fear intimately since my breast cancer diagnosis, some three years ago. The fear of dying from my cancer lingers. Two years on, and cancer free, I confront those fears each time I revisit the hospital for check ups, scans and general health reviews. I recognize that, and wish it were not so, but I seem powerless to rid myself of the burden of fear.

Once in my life I have been close to death, a very real close encounter when infection caught hold during chemotherapy and spread like a wildfire through my body. By the time I had appreciated the seriousness of the situation, my mind was compromised, responding poorly to the need for help. Sleep seemed the answer. The desperate desire to sleep, to ease the pain through oblivion.

It was 3am when I was eventually admitted to hospital, after a series of administrative blunders, and poor advice. My temperature had soared to 41 degrees, my blood pressure had dropped, my pulse racing. I had no comprehension of what was happening to me, but somewhere inside I knew, if I fell asleep alone in my home, I might not wake up again.

I was diagnosed with neutropenic sepsis shortly after admittance, and remained in a negative pressure isolation room for six days. For much of that time, those early days, it was hard to have an interest in living, when my body seemed so incapable of sustaining my life independently. It was then that fear retreated.  I was unafraid.

That feeling of slipping away from the world is so poignant in the Bruce Springsteen song, Streets of Philadelphia, about a man confronting his own imminent death after contracting AIDS.

The night has fallen, I’m lyin’ awake,
I can feel myself fading away,
So receive me brother with your faithless kiss,
Or will we leave each other alone like this
On the Streets of Philadelphia

Fear has taken up residence in my heart. Just when I think it is safely out of sight, tucked in some recess in my mind, it leaps to the fore with a vengeance when I revisit the place of my darkest hour: the hospital cancer wards. Memories of my year long treatment, the anguish, heartache and physical dread of chemotherapy, comes flooding back with an urgency that takes me by surprise as I walk familiar corridors.

If I have lost confidence in myself, I have the universe against me. Ralph Waldo Emerson.

Fear is the very absence of confidence in our ability to protect or preserve our own or others safety. It is the emotion that betrays us, when we think we have put on a brave face, or kept our true feelings in check. Fear is the tears that fall, unexpected and uncontrolled, when confronting our dread. It is the anxiety in our heart when we feel out of our depth. It is the nightmare that torments us with alarming regularity.

Finding some way to build our resilience, to have fortitude in the face of adversity, must be our goal, yet it is not easy. I have been fascinated by fortitude  since my teenage years. It is not an attribute hugely in fashion. It is largely an unused, rather archaic term. As an inveterate re-reader, I have cherished and long adored the horse-lovers’ trilogy and multi-dimensional novels, My Friend Flicka, Thunderhead and Green Grass of Wyoming, set in the ranch lands of Wyoming in the 1930s.

In these novels, the all-seeing, all-knowing mother, Nell, sees the challenges her two sons face and has conversations with them on important themes. In one, she talks of the need for fortitude.  Reading that as an eleven year old, it brought wonder to my heart. This was something teachers never talked about at school, the idea that we might develop fortitude, to find our own inner strength when our external environment sadly failed to protect as we might wish. These books, and Nell’s little sermons, opened up a whole new world of insight and knowledge. How do we manage, not what is happening around us, but what is happening inside of us, at our very core?

The Sky Atlantic drama, Fortitude, is set in the fictional Arctic town of Fortitude. Aside from having a remarkable and intriguing plot, and quite mesmerising theme music, it fascinates because each character is tested to the limits of their fortitude. The environment is an immediate and obvious challenge, but so too, are a myriad obstacles, internal, external, metaphorical and literal. There is not one person free from challenge, from inner turmoil, from anguish, yet still lives must carry on, children fed, work tended to, relationships managed, against this threatening backdrop.

There are many ways in which we can sustain ourselves, but finding what works for us, what reduces or alleviates fear is a personal matter. It is trial and error too, and it is having the courage to reject what others may feel is ‘good for us’ in favour of our own personal responses. The need to work constantly to restore poor mental health, or build better frameworks to sustain good mental health are imperative, yet they are skills too infrequently taught in schools and in the workplace.

I used to describe the local National Trust property, Baddesley Clinton, as my private sanctuary, a place I visited often during treatment. Walking alone around the lake, observing the great changing beauty of nature, I felt a great sense of peace, a freedom from fear or anxiety or anguish. It kept me safe, restored me for the journey home and that great rushing in of the world once more.

New oceans quote

Fear may live in us all, or reside in our hearts during times of duress and challenge, but it need not always be that way. There is a need to find a balance too in our understanding of the self, our mental health concerns and our environment. It is the ability to recognize that which helps, and that which hinders our journey away from fear.

How much do we work on our inner dialogue, striving to understand our emotions and motivations, and how much do we consider our environment, the very real living space we inhabit, the people we surround ourselves with who may be unwitting accessories to fear?

I like the idea of new oceans to explore. Taken from a vantage point of vulnerability or of strength, out there, new oceans await us. We must first, have the courage to lose sight of the shore.

 

 

 

 

 

On Brave the Shave, living with cancer through remission, and why charities get it wrong some times.

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Oncology sign

I played my usual Wednesday evening social mix in tennis this week in less than perfect weather conditions, but agreeable as always. My attention was drawn to the exuberant man on the adjacent court whose head was entirely shorn of hair, and I was perplexed at first, thinking it rather an extreme look, until I remembered about this latest Macmillan Cancer campaign, Brave the Shave.

It is strange, but my peace of mind was disturbed all evening, as conflicting emotions raged on. Despite rational me prompting that I should congratulate and applaud the commitment and the fund-raising endeavours, emotional me felt angry and cheated, and very much misunderstood. How can anyone, in some gleeful fit of enthusiasm, compare having their head shaved with the hair loss that occurs as part of that awful fall out of the most poisonous of drugs, chemotherapy? And the congratulations and high spirited comments of others, feel strangely out of place when we think of the real reasons people lose their hair through cancer treatment and the emotions that are attached to that loss.

It is where I, as an on-going patient, frequenting the oncology department on a regular basis as my cancer iies in remission, am at odds with Macmillan, the charity that has driven cancer research and funded endless rounds of support, training and publications. It is where I am at odds with this craze for thinking that publicity stunts can solve a world of problems on our doorstep. Should I be grateful that Macmillan Cancer are pushing with a frenzy this drive for everyone to shave their heads through the month of August? Perhaps it is most remiss of me, but I don’t feel grateful at all.

I have no pictures of me during that time when I lost my hair, which is now over two years ago. I don’t mind that, as for the most part, I looked like some awful zombie creature (there’s a character in Buffy who really struck a chord) with fattened cheeks and sunken eyes, as much a result of the steroids and anti-sickness drugs, as sleeplessness and worry.

I have a few pictures of me attending family and social events, with a scarf draped around my head in an attempt at a Zeta Sackville-West style glamour, when I was tired and sick of my bandana. I have no pictures of me when I lost my eyebrows and eyelashes, and all bodily hair, a stage that comes just a few weeks after the first rush of hair loss.

It was in that time that I stopped looking at people. The few journeys out that I made on a needs-must basis, to the supermarket or petrol station, I did without making eye contact at all. Not with shop-keepers, or till assistants, or casual acquaintances bumped into in the vegetable aisle. I kept my head down, and found myself looking away, if anyone tried to haul me into focus.

In all my years of working with children and young people with SEN or disabilities, including Autism and other socially-related disorders, I felt for the first time a kinship with those who cannot bare the gaze of others.

There is something of a shame attached to feeling so very notably different. Hair loss, and the bandana, is one thing. Losing one’s eyebrows and eye lashes, for me, became the straw that broke the camel’s back. This total hair loss, occurring as it does, some weeks into treatment, seems also to coincide with a time when the road ahead seems long and gloomy, when spirits are low and energy reserves run dry.

I found it highly distressing, all those months of treatment, and intensely traumatic, if that is not pushing the boat too far. It begins with the optimism that this breast cancer will be removed with surgery, and perhaps a quick blast of radiotherapy, but that becomes, in reality, a long drawn out process of surgery, recovery, illness, recovery, chemotherapy, illness, neutropenic sepsis, hospitalization, recovery, radiotherapy, recovery… And all the time, those same sad faces appear, like clockwork, in the chemo ward, or in some other waiting room of despair, as those many hundreds of people diagnosed around the same time, are awaiting their endless round of surgery, recovery, chemotherapy…

I could not help my mind thinking as I replay the events of my Wednesday social tennis, that in order to support and empathise with cancer patients, if that is the point of this exercise in fund-raising by Macmillan, then how much better to say, rather than Brave the Shave, why not visit a hospital ward (in good health of course) and sit with patients as they while their time in the waiting room, or endure hour after hour of the poisonous drug dripping into the veins. Or shop for patients who live alone and are in need of basic essentials or company, or who struggle to get to their local health centre for their daily round of injections, post-chemo.

There is an endless need for support, and it is support that, despite the ‘you need never be alone with cancer’ glossy adverts, in effect is so frequently targeted at those with terminal cancer, on end of life care, not those enduring the solitude of treatment.

I discovered that when I asked for help from Macmillan cancer at a time when I could not bear any further treatment and wanted to opt out of my care plan. Alone in my house post-chemo, I cried for seven days almost non-stop after one particularly horrendous session. The carefully spoken and scripted support from a telephone help line left me more enraged than supported, or understood.

What stays with me, long after the horrors of treatment and the absolute dread of that chemo ward, are the pitiful cries of women and men, some in their seventies or more, calling out in pain and fear as the nurses tried many times over, to insert the cannula that administers the drugs that pour in, often over 8 hours.

Such awful horrors. Such pitiful states. And the young man sitting next to me on two chemo sessions, as our timings coincided for treatment, covering his face in shame as the tears flowed, despite his brave and hardy youth. And my own fears and horror of needles and chemo and the after effects of the drugs – they lie, waiting to re-surface, for my next check up, for the next moment I feel particularly vulnerable, to the lingering torment of the emergence of secondary cancer.

So, unsure whether the fault lies within me, still I say, before you Brave the Shave, consider how else you might support, what else you could do if you are keen to make a difference to the lives of those who are suffering cancer and its treatment. Appreciating the month is almost out, I believe these charities, with Macmillan firmly in mind, for all their research, social media and glossy adverts, do those they seek to support a misjustice many times over, when they prompt behaviours that are less than sensitive to need.

Quotes about being strong

PS For all those of you who have Braved the Shave, I do appreciate the gesture and am absolutely sure your support will make a difference.

On looking back, anniversaries, hospitals and Robert Falcon Scott

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RFScottMy adoration knows no bounds, and so I begin my post, unashamedly, with an image of Captain Robert Falcon Scott. It is relevant,and fitting but, as is the nature of these rambling posts, you must read on to find the connection.

I have been struck recently by the power of association. By how we merge events, feelings and strong emotional experiences in our mind’s eye on the strength of past actions. So, over the past few weeks as my birthday approached, I felt a strange sense of dread and unease, that only really came to light when I spent some time pondering the source of my discomfort.

You may recall an earlier post of mine – in fact, almost a year to the day since I posted – On neutropenic sepsis, nightstand central, laughter, family and good friends – 10th May 2013.

In that post I was extolling the merits and wonder of the app Nightstand Central, which I discovered during a five day hospitalisation for severe infection, or neutropenic state, during chemotherapy treatment for breast cancer. I was as poorly as I have ever been, if not more so, and so very jaded and tired. and spent the days leading up to my birthday and beyond, in an isolation unit at Warwick Hospital. When I knew I was being admitted, I gathered up Scott’s Last Expedition as my treasured possession – although sadly for the most part, I felt too poorly to read or pay attention to anything much at all.

The anniversary of that hospital stay has been very much on my mind of late, quite unbidden. I would rather the mind dwelt on happier times, but it seems there is little choice in the matter – the mind strays, where the mind strays.

It is hard sometimes, not to look back, whether with delight and great pleasure, or whether in a state of some anxiety and discomfort, as I have been. What has compounded the feeling, somewhat, has been a spate of hospital and GP visits, for check ups, medication reviews and various tests. At one, meeting my oncologist again, sitting in the same chair betwixt the meeting rooms and chemotherapy treatment room, I was as agitated as if I was waiting on the call that sent me filled with horror, for my next chemotherapy session.

Logically, of course, I knew that I was there for quite different reasons, but the mind plays such tricks.

Recently, in conversation with a young lady who had experienced eating disorders, and severe anorexia, she commented that, despite a full recovery now, she knew that she had not really recovered, but that the eating disorder was waiting in the wings for her, hanging over her life for ever. Her weekly therapy sessions are held in the centre where she was once admitted for treatment, and she described the dread she felt each week, turning up for her meeting.

There are so many issues here, it will make at some point, for a separate post altogether. It staggers me to think that anyone could conceive it a good idea to deliver therapy at a place where associations with illness, fear and treatment have taken place. If I found the experience of re-visiting the scenes of my past cancer treatment traumatic, on a six monthly basis, what must it be like for a young person to face that same intense emotional experience on a weekly basis?

The past has a power and a hold like no other. We are so dependent on a healthy, fertile, creative imagination to visualize the best for ourselves in our future, and oh – how that ability takes a battering, in times of ill health.

During the latter days of my hospital stay last year, knowing that my most precious book, Scott’s Last Expedition, was at my bedside, was enough to make me feel tethered to this world, enough to make me smile and look to the future.

Much as we might wish to be always marching forward, the past has a hold and sometimes, it seems wise to linger and contemplate former times. Understanding why our mind takes us back to difficult moments in our past can help us acknowledge the challenges we have faced, and prepare us, so that we may race full steam ahead into tomorrow.

Capt Robert Scott

The events of the day’s march are now becoming so dreary and dispiriting that one longs to forget them when we camp; it is an effort even to record them in a diary

 

 

 

 

 

On neutropenic sepsis, Nightstand Central, laughter, family and good friends

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Nightstand Central
I have extolled the merits of Nightstand Central this past week, since I discovered the existence of this wonderful app, created by Thomas Huntingdon – http://thomashuntington.com/. I have recently had a five day stay in an isolation ward in hospital for neutropenic sepsis, and on day one, my son kindly loaned his mini-ipad and set up Nightstand Central to play my favourite music (which, coincidentally, is also amongst his music collection).

What a Godsend Nightstand Central has been during all the stresses and anxieties of hospital life. I wonder how I might have coped without it. During my most awful moments and long, painful nights, when illness seemed to take over every fibre of my being, Nightstand Central has displayed its wondrous images and played its sweet music so unfailingly, that I have drifted into a different world entirely, far, far away from my hospital bed.

Several nurses and the Consultant, discharging me on my final day, have enquired about the app and also about the classical piano music collection (though I confess amongst the 32 tracks in my son’s compilation, I know the names of only a few pieces). It has been my delight, and I am most blessed to have a son who anticipates my needs, even before I know them myself.

Tuesday 7th May, 04:04am. I raise my hospital bed and contemplate my choices: to write or to read. There’s an overhead reading light that is really quite magnificent, and so beautfully accessible even as I’m attached to this drip and my bed. The night shift nurse, who’s ‘part of the furniture’, brings me simple linctus for the cough that’s awoken me. The drink is sweet and familiar. It reminds me of childhood. I ask about the other patients and chat as the nurse lingers. There is a momentary calm on the ward beyond my isolation room, a world I can only hear and imagine, but never see.

The spacious and high tech room fascinates me and I am mystified by the positive pressure room I inhabit and resolve I must investigate further on my discharge.

My son’s gift for my hospital stay of his mini-ipad set up to Nightstand Central, has been a godsend and the greatest delight. I am soothed by music from his classical piano collection, by the images that drift across the screen and tempt me to worlds far away, and by our mutual favourite sound track, Dr Zhivago. Not the old Julie Christie version, but the more recent tv adaption with Keira Knightley and Sam Neil. Outside, early morning birdsong drifts through the just ajar window (how is that possible to maintain a positive pressure with an open window?) and I gather my book to read to the sound of Dr Zhivago and the morning chorus.

Scott’s Last Expedition is my night time reading, though I am sad that it is only this last few days of my stay that reading, or any task of pleasure, has been on my agenda. All this time on my hand, and too poorly to do anything much at all.

I had a signficant birthday during my hospital stay, and on the morning of my birthday, after the most debilitating night, I felt that I could not cope with visitors. I was of a mind to ask the nurse to turn any visitors away. I looked dreadful, my skin dry and sore from persistent coughing from my chest infection, I have no hair or eyebrows or eyelashes at this stage during chemotherapy, and in the hospital room it was far too hot to wear my bandana. I pictured myself as some awful, alien creature the likes of which would inhabit a Dr Who, or episode of Buffy, and on top of that, I felt poorly too.

Such is the nature of the wonderful, caring staff who tended all my needs, that I was persuaded around to see my first visitors at 12 noon. I am so pleased I did not give way to my initial maudlin thoughts. The sight of my three visitors, lined up on guest chairs against the wall, in transparent gowns and bright blue gloves, was so ridiculous that I laughed out loud. It looked for all the world that they were waiting on some bizaree, shame-inducing party game. And oh, how their visit and our chatter lifted my spirits! It was so good to escape the prison of my own misery.

After a respite sleep, my second visitors called late in the day, my son and daughter, carrying a host of cards and presents, keen to chat and share their day in Oxford and lunch at the Cherwell Boathouse – http://www.cherwellboathouse.co.uk/ The restaurant choice was inspired by a conversation on Twitter, with the delightful and quite wonderful Josh Spero.

The weather was good and I was so pleased they continued with the planned birthday events as there is such pleasure in sharing these precious moments. I hope I will get to visit there myself some day, when my treatment is over and recovery assured.

Cherwell Boathouse

I have been profoundly moved by the comfort and support of family and good friends, who have weathered these stormy times during my treatment for breast cancer, without a murmur of discontent. I am blessed indeed.

My final image is of the restaurant that so impressed my son and daughter, as they dined and gazed out at punters on the river Cherwell at the Cherwell Boathouse, which seems to my mind, the epitomy of elegance, redolent of the finest of our English customs and traditions.

cherwell boathouse 2

Let us be grateful to people who make us happy, they are the charming gardeners who make our souls blossom.

Marcel Proust