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Ros Hughes, Tongue Cancer Survivor

Head and Neck Cancer

Ros Hughes : personal cancer story
South Africa Survivor

South Africa

My cancer story started in 1997 when I was 40 years old, a mother of 2 young boys, a university lecturer in pharmacy - and a wine taster. I mention the wine tasting as I had become aware of increasing discomfort on one side of my tongue when swilling the wine around my mouth. Fortunately for me, my dentist was sensitised to tongue cancer (his father had suffered from it), and insisted on a biopsy, despite me not fitting any of the usual risk factors. The biopsy confirmed squamous cell carcinoma, kick-starting a new life and a new journey – the cancer journey.

For the next 4 years, my life yo-yoed between my small home town, Grahamstown, and Cape Town, 800 km away. Ok, it is considered to be one of the most beautiful cities in the world, but viewed from a hospital window... well maybe not so appealing! Despite initial surgery followed by radiation, which as you will no doubt know, thoroughly scours out your mouth and leaves pain, dehydration, weight loss and no taste buds in its wake, I had 2 further recurrences. The decision by the surgical team in 2001 to remove almost half my tongue resulted in my first life-changing operation, forcing me to re-evaluate my current life and make major decisions.

One of the things that was such a huge help in getting through those difficult times far away from most family and friends, was to write to them, telling them in detail what was happening to me, opening up emotionally as to how I felt - not easy for an introvert like me - but it felt so good to put it all down on (metaphorical) paper and share my intense and wildly fluctuating emotions. Who cares if they skimmed over the medical details? For me it was a huge release to share all this, and in a way objectify what was happening to me, to stand back and dispassionately observe myself as a patient, not just immerse myself in actually BEING that vulnerable, suffering patient.

I also embarked on a different journey - I attended two courses, a year and an operation apart, on the mind-body connection, mindfulness and living consciously. This totally burst my conservative, restricted ‘science’ bubble wide apart, forcing me to look inwards at who and what I was, opening me up to a much broader, all-encompassing awareness of different ways of being and of seeing life. This is when I truly started to “stop and smell the roses” and make time for activities that were meaningful to me at a deeply personal level.

For the next 9 years there were no obvious signs of cancer. Despite restrictions on eating and the need to consciously articulate words and speak more slowly, I was fortunately able to continue with my lecturing and research career. However I continued my ride on the medical roundabout. My teeth had deteriorated badly and I had recurrent oral infections. Of course with radiation, blood supply to the affected area is compromised, so the possibility of a serious infection spreading to the jaw could mean losing it if healing was compromised. So the next phase began – rehabilitation of the mouth. I was referred to a specialist team in Johannesburg and was now even further away (1000 km) from home, but the saving grace was that my sister lived nearby – we are very close and are best friends. Given all my operations, my small mouth, and the high radiation dose, I was considered a very difficult, high risk case for removal of all the bottom teeth, and subsequent placement of dental implants. However this awesome team made a plan, and at the end of a long, drawn-out process, during which I was in and out of hospital, had 30 ‘dives’ in a hyperbaric chamber, and endured endless hours in my prosthodontist’s dental chair, I emerged with beautiful teeth, just in time to celebrate my 50th birthday. That was a real milestone for me.

But that’s only half the story...

Instead of attaining that magical 10 year cancer-free goal, in 2010, after constant oral thrush and a growth on the front floor of my mouth around the dental implants, I was referred for a biopsy, the results of which catapulted me back into the world of cancer. And so it started all over again – biopsy – positive result for cancer – resection of tumour – pain – infection – eventual healing.

However, those sneaky damn cancer cells waited until the coast was clear to start re-inhabiting the same place, and two years later, in 2012, I was back for another biopsy, followed by much more extensive tumour resection. All possibility of a relatively normal life was smashed to a million small pieces one Wednesday afternoon, while taking a Pharmaceutics practical, when my surgeon called to give the worst possible news – cancer in the jaw and in the skin of the jaw.

And so my totally ‘new’ life started in January 2013 when, as a very high risk patient and having been given a 50/50 chance of success, I had a 12 hour mandibulectomy, during which my jaw was removed and replaced with the fibula from my left leg, and some leg skin (tanned and with hair!) grafted on to my jaw. The grinding, torturous physical path of that hospital stay, along with the highly variable quality of treatment I received from a whole spectrum of health professionals, forced me in those despairing, sleepless, early hours of the morning to dig deep and to acknowledge that I had to step up and take some responsibility for my own progress. To my dismay, I also identified a number of medication errors which, as a pharmacist, I was equipped to correct. But what about other less well- equipped, more vulnerable patients?

Apart from the great success of the operation, what this period did was to crystallise a path for me to contribute to patient care by integrating my various life roles - teacher, researcher, health professional and, most importantly, patient – to become a patient advocate to the health professions. My aim has been to present to practitioners, especially those in training, to give them a glimpse into our real lives - often extremely compromised ones - and sensitize them to our needs in the hope that they treat us, their patients, accordingly.

So in 2016, 19 years after diagnosis, I am still alive, partly functional (compromised speaking, eating, drinking, and with constant dribbling!), medically boarded as I cannot sustain routine lecturing, doing and supervising research, and delivering patient-focused presentations whenever the opportunity arises. I am alive due to the finely honed skills of many health professionals over many years. I survive with the wonderful, loving support of my family and my incredible friends. I survive by being fortunate enough to live in close contact with Nature and actively celebrating Nature every single day with walks accompanied by my beautiful, loyal dog. I survive by continuing to read about different approaches to life and spirituality. I survive by closely monitoring and ensuring that I eat high calorie, healthy foods. I survive by forcing myself to socialise and revel in that collective energy that then feeds into my life. I survive by doing this – writing – and I aim to do more. Despite never having been a particularly goal-orientated person, I now have goals (small ones), and most importantly I know that I have many reasons to live – and to live fully.

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