What’s the one thing you are grateful for? I’m sure many of you answered family, friends, health etc. Did anyone mention speech? Singing? Eating? I wouldn’t have a year or two ago either, that was before I was investigated for oral cancer.

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.  My future was ahead of me. I had been married for 4 years and we were devastated.

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? 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?

I felt de-humanised

In this consultation and the next, I felt like a piece of meat or a specimen; de-humanised.  Just the thought of having your tongue removed is barbaric enough let alone facing a team who are insensitive to my plight.

The next appointment with the same team was just as cold. Anticipating the worst it came to fruition. 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. The only person who made eye contact with me, the only person during the full visit, delivered the news that I had a 30% prognosis of living for five more years.

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.

Still, no one even looked my way to offer a nonverbal reassurance. Their shoes were more interesting.

I had always heard stories of people jumping in front of trains. I had wondered what could be so compelling. On my walk to the station, following this consultation, I understood as I watched the train approach.

Fast forward….

None of us wanted to get a second opinion, but we one when it was arranged.  My husband, sister and brother came with me to see this team. The sense of anxiety and stress was suffocating.

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

Furthermore, they wanted to introduce me to a doctor from the Royal Marsden to talk about the possibility of a clinical trial. They made me feel like my treatment mattered as I mattered. Information was given to me every step of the way. Indeed, they invited me to ask questions and 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. I chose to live. The good thing is that every step of the way, I was an active part of my care team, not just the subject of the care, engaged and conversed with because it was a part of their job. No. Instead, I was fully integrated and encouraged in my rehabilitation as I learned to swallow, eat, and speak.

I can eat normally (hurrah!)

It has been just over a year. Through hard work and the dedicated support of my rehabilitation team, I can eat pretty normally. There isn’t a feeding tube in sight! 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. There are no wires or machines in or near me to help me speak or eat. I now support other oral cancer patients not only in the UK but across the world.

Despite all of this, 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. Alternatively, if I had remained under their care, they would have listlessly fitted me with a permanent feeding tube and tracheostomy, and I would be speaking through a machine. Consequently, I would have a compromised quality of life.

Key take home message

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

My comments to you

  • It’s not your job to give me false hope.
  • We rely on you to give us information, guidance and encouragement.
  • We look to you to support us in our more dire time.
  • Look at us as fellow human beings, capable of immense emotion, which you can help cultivate into positive action, not pessimism.
  • We never wanted false hope but open dialogue and person-centredness.
  • By just welcoming me into the conversation about my care, I felt more secure and looked after.

Final thoughts

Does anyone ask for worst-case scenario information? My 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. 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.

Extreme polarization in information communicated can be detrimental, whether exclusively positive or exclusive negative. Both set you up for disappointment, but in different ways. A cancer diagnosis is unexplainable but all healthcare professionals can make it more bearable by engaging in genuine, empowering, and open dialogue with the patient.

I thank my clinical team for giving me back my life and working alongside me.

Laura’s words to us:

When we contacted Laura to clarify some of her story, before writing her blog she ended by saying:

 ‘Thank you so much for writing this and being the voice for so many patients. It’s helping me to bring closure to the first part of my diagnosis.’

Laura

Writing about a challenging experience can be empowering and very cathartic. It helps us release some of those emotions and feelings that we bottle up inside us. If like Laura you want to share your stories with us, please do get in touch, we would love to hear from youhttps://healthcarecommunicationmatters.co.uk/patient-and-family-experiences/