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.
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.