Tag Archives: chemotherapy

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

Standard

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 Wolf Hall, Convalescence and the Restorative Powers of Thomas Cromwell

Standard

Thomas_Cromwell_HolbeinOn 8th November 2012, after a long and anxiety-inducing day at Coventry University Hospital, I dashed into a Tesco store close to home and purchased a much longed-for copy of Wolf Hall by Hilary Mantel. This book had been on my mind to read some goodly while but somehow, events had conspired to take me further from my desire.

It was a rather late and desperate dash at the end of a wearisome few days. On 9th November, at 7.30 am, I entered Warwick Hospital for day surgery, a wide local excision for breast cancer, together with a biopsy of my sentinel lymph node. I have not had much awareness of my lymph nodes, prior to that time, but somehow, they seemed most precious to me that day.

The days following surgery remain in my mind as a very strange and surreal time. I recall still and strongly the scent and beauty of the flowers that gradually filled my house from friends and family; the glow of the coal fire lit daily, mid-afternoon, that smoked occasionally as the wind blew; and the good humour and support of my son who cared for me in those first few days. But, most significant and unexpected are memories that hold me in their grip, of the time I spent in those fragile convalescent days, reading and being utterly mesmerised by Thomas Cromwell and Hilary Mantel’s bewitching novel, Wolf Hall.

Goodness, but Wolf HallI have been a slave to the pages of Wolf Hall.

Daily would I desire time to pass quickly so that my treat, my little moment of perfect satisfaction, would come sooner – three o’clock, time for tea, a biscuit, a blanket pulled over my lap and Wolf Hall. Nothing could be allowed to disturb this time of bliss, until the afternoon had merged into evening and Radio 4 had announced six o’clock with the striking of Big Ben.

Rarely have I been so brazen in my reading habits – aside holidays and the occasional weekend. To read in the day time, to absolve myself of all other tasks or responsibilities, has been an absolute joy.

Despite these anxious times, my dread of the outcomes of surgery, my aches pains and moments of quiet despair, Wolf Hall became my solace, my comfort day and night, my constant companion, my consolation.

I owe the greatest debt of gratitude to Hilary Mantel and the unwitting part she has played in my recovery from surgery, in turning around days that I thought would be filled with misery, into days that seem to be remarkable in their serenity. Of course, still there was the need for pain management and daily care, but that seemed an irrelevance – what I discovered, in those quiet, home-bound days, was a love of Thomas Cromwell, the Master Cremuel of Mantel’s creation.

Once, driving through Lichfield on a Summer’s day, with my window open, I caught the scent of roses in the breeze from a nearby row of houses. I could not determine easily which property the scent came from, but it lingered in the air and filled me instantly with a sense of great sadness and nostalgia. It moved me so much, I struggled to understand what had prompted such emotion.

RosesAs I drove on, I thought of my childhood, and Sunday visits to my grandparents, now long since passed away, and playing in my grandmother’s garden as my grandfather tended the roses that bordered the lawn. The scent that caught my senses that Summer’s day was one and the same, bringing forth that well of rememberance for times past.

I imagine one day, I will be biding my time, a little older, wiser maybe, when the combination of fresh cut flowers and a smoking fire may set off some myriad associations in my mind, and Wolf Hall, and Thomas Cromwell, will flood back into my life, as fresh as if it were 10th – 15th November 2012.

My mother was faithful to my Christmas wish list and Bring Up The Bodies duly arrived on Christmas Day, but I have been reluctant to disturb its secrets. In despair at reaching the end of Wolf Hall, I began the book again. It enchants me no less now, that at my first reading. I cannot permit myself to begin Bring Up The Bodies until I have reached the end again, of Wolf Hall.

On 9th January, I began chemotherapy as the next stage in my treatment programme. My promise to myself had been the joy of beginning Bring Up The Bodies, but still, as I arrived home, a little sorrowful and out of sorts, it was Wolf Hall that accompanied me and carried me through the day.

As I mentally prepare myself for my next chemotherapy session, I have set out my afternoon to include the opening of Bring Up The Bodies. I can think of no better way to shake off the gloom of hospitals and drips and canulas and FEC chemotherapy, than immersing myself in a world Hilary Mantel has brought so vividly, so brilliantly to life through the eyes of Thomas Cromwell.

‘Now, here, before we go to Winchester, we have time to spare, and what I think is, Rafe, we shall visit the Seymours.’ He writes it down. Early September. Five days. Wolf Hall.