Oral Cancer: A polarisation of care

A polarisation of care: Laura’s story

What’s the one thing you are grateful for I wonder? I’m sure many of you answered family, friends, health etc. Did anyone mention speech? or singing? or eating? I wouldn’t have a year or two ago either. But everything changed when the doctors investigated me for oral cancer. I, therefore, share with you my experience of a polarisation of care.

My life and the lives of my close family members were turned upside down in May last year. I had just been diagnosed with stage 4 advanced oral cancer in my tongue. The implication? Complete removal of my tongue.

The main risk factors of oral cancer are smoking, drinking a lot of alcohol, and infection with the HPV virus; none of which were relevant to me. https://www.cancerresearchuk.org/about-cancer/mouth-cancer/risks-causes

I was 39 years of age, and my future was ahead of me. My husband and I had been married for four years. Indeed, my whole family were devastated.

Initially, the care team who gave the diagnosis embodied empowerment compassion, inclusivity, and hope. My husband and I left that appointment with a feeling of complete and utter shock. But we were reassured, that whilst this diagnosis is unfathomable, we would get through it, together.

Unfortunately, that hope, despite the situation, was diminished nearly completely when referred to a neighbouring hospital. From the inception of the first appointment, it was cold. Inhuman. Robotic.

Setting the scene

Imagine the scene if you will. I am sitting in a consulting room with my sister. The doctor has put a scope down my throat so that he can see my tongue and assess the situation. Whilst sitting in this position, I struggle to hear what the doctor is telling us. Imagine my sheer terror when I heard, my sister repeat back to him ‘you need to remove the whole tongue?’ I gagged. My heart was racing, and my blood pressure was through the roof!

Their attitude towards us was in stark contrast to my first consultation. Why give me this information when I am incapacitated and can’t talk? As a consequence, my whole world is intangible and completely fragmented, crushed within one-second.

KEY POINT: Pause your tasks, break bad news sensitively and extend reassurance. Am I going to be okay?

In this consultation and the next, my clinical team were insensitive to my plight. Consequently, they made me feel like a piece of meat or a specimen; de-humanised. Indeed, this only exacerbated how awful I felt about having my tongue removed; it seemed so barbaric and inhuman.

The next appointment with the same team was just as cold. Anticipating the worst it came to fruition. The doctor explained that I would not be able to talk again (maybe with a machine). I would have a permanent tracheostomy and, I would need a permanent feeding tube. I would never taste food again. During this consultation, no one could look at me apart from the doctor who told me that I had a 30% chance of living for five years. Their shoes seemed more interesting.

No one once asked how I felt about this news or plan of care, or how I was coping. The Macmillan nurse didn’t even show any interest in me. The only supportive thing they suggested was that they arrange a second opinion.

So, I should not have been surprised that no one once asked how I felt or showed me any empathy. The Macmillan nurse didn’t even show any interest in me. The only supportive thing they suggested was that they arrange a second opinion.

Following this consultation, my mind was in turmoil. I was walking to the train station with my husband in a daze. To illustrate how I felt, and this might sound a bit random, I had always wondered why people would jump in front of trains to commit suicide. Why was this act so compelling? As I approached the train station, I understood fully, as I watched the train pull into the station.

Fast Forward…

None of us wanted to get a second opinion, but we agreed to go. My husband, sister and brother came with me to see this new clinical team. Understandably, the sense of anxiety and stress was suffocating.

Yet, the whiplash in experience between this care team and the cold, inhuman care team from just a few weeks prior was significant. I embraced a wave of positivity, optimism, hope and transparency. To my surprise and relief, the feeding tube and tracheostomy would be temporary. One of their key aims was to enable me to eat ice cream (obviously not lick it) but swallow it. I WAS IN.

Clinical Trial

Best of all, they wanted to introduce me to a doctor from the Royal Marsden to discuss the possibility of a clinical trial. More importantly, they made me feel like my treatment mattered, as I mattered. They informed every step of the way and gave me lots of information. They invited me to ask questions and particularly, encouraged me to engage in discussions. I was part of this team, in every step of the way.

Of course, I signed up for the trial. You might think why, when you hear that 99% of my tongue was removed. Unfortunately, we had no choice if I wanted to live. So, I chose to live. In contrast to the first clinical team, I was an active part of my care team, every step of the way. For this simple reason, I felt like a fellow human being. I was fully integrated and encouraged in every step of the way. Equally important, I was included in my rehabilitation as I learned to swallow, eat, and speak.

A year on, and through hard work and the dedicated support of my rehabilitation team, I can eat pretty normally. There isn’t a feeding tube in sight! Specifically, I even surpassed ice-cream! (weird not being able to lick though). I can talk. I have a speech impediment, but I don’t care. Best of all there are no wires or machines in or near me to help me speak or eat. Because of my experiences, I now support other oral cancer patients not only in the UK but across the world.

Fundamentally, I am a strong and determined woman. But as I reflect on my experiences, I honestly believe I would have committed suicide, through depression if I had stayed under the care of that first clinical team.
They would have listlessly fitted me with a permanent feeding tube and tracheostomy, and I would be speaking through a machine. For those reasons, I would have a compromised quality of life.

What can healthcare professionals learn from my experience?

Finally, I hope you can understand that,

1. It’s not your job to give me false hope.

2. We rely on you to give us information, guidance and encouragement.

3. We look to you to support us in our more dire time.

4. Look at us as fellow human beings, capable of immense emotion, which you can help cultivate into positive action, not pessimism.

5. We never wanted false hope but the open dialogue and person-centredness.

6. By just welcoming me into the conversation about my care, I felt more secure and looked after.

The completely polarized experiences with two separate care teams make me wonder where the distinction lies. Their training? Management? Incentives?

My final thoughts

1. First, I wonder if anyone asks for worst-case scenario information? Because my prognostic statistics were based, on the average patient with oral cancer (older man, overweight, heavy smoker and drinker). The only similarity I had was being overweight.

2. Worst of all, the exclusive delivery of worst-case scenario information, presented to me by the earlier clinical team, altered my perception of life significantly; to the point of near suicide.

3. My final thoughts are that extreme polarization in information communicated can be detrimental, whether exclusively positive or exclusively negative. Both set you up for disappointment, but in different ways. For that reason, all healthcare professionals can make it more bearable by engaging in genuine, empowering, and open dialogue with the patient.

My very last words are to the clinical team who treated me as a fellow human being. I thank you wholeheartedly, for giving me back my life and working alongside me.

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