I found out I was dying via the NHS App.
I think what I find most frightening is the fact that I had no idea I had been living with a form of neuroendocrine cancer for several years. Mine is called ‘Atypical Lung Carcinoid’ and I didn’t have any symptoms. I was diagnosed by chance, a few months ago.
And yet, here I am with an incurable – but treatable – Stage IV metastatic cancer. Right now, I’m trying to find a way to live with the shock, the anger and the knowledge that really, I am a ticking time bomb – and I need help.
I am no stranger to professional mental health support. Following a breakdown a few years ago, I tried the NHS’s one-size-fits-all counselling solution – but for me, it was counterproductive.
I eventually found a private, specialist trauma counsellor to walk beside me. And I built up a toolbox of other therapies and healing modalities to help me in day-to-day life. It has been transformative.
But after hearing the word ‘cancer’, I couldn’t seem to apply my previous learning to what I now faced. There is a gaping hole in the NHS for psychological support, especially for a rare cancer diagnosis. I felt very alone. These days, with cancer rates rising, you would think mental health support would follow a rather well-worn path.
Sadly, my diagnostic journey also left me feeling scared and anxious as I was originally told I had metastatic lung cancer with a dire prognosis of just months – a fact I discovered on my NHS app in a note from my GP’s surgery.
Yes, I found out I was dying via the NHS app.
I’d lost my mum to lung cancer – and to be fair, my GP noted I would now need extra support.
I’m still waiting. Even though at this point, I believed I would be dead by Christmas. My GP surgery have still never addressed this mistake with me despite me contacting them on several occasions.
This has rocked my faith in local care at a time when I most need support. I remain incredibly angry about this especially as I had asked the GP if I could have an x-ray or a test for lung cancer from time to time because of my mum, and she categorically told me I would never get lung cancer!
So, receiving my correct diagnosis – and a better prognosis – was an incredible relief.
But there were added frustrations along the way before I got to that.
It was only my own research that had led me to discover UK centres of excellence for neuroendocrine cancer. Turns out I can be cared for by one and this allowed my anxiety to settle down tremendously.
It was such a relief instead of hearing phrases like: “I’m afraid we don’t know anything about your cancer, you’ll need to speak to your specialist team”, or “we don’t have specialist neuroendocrine cancer nurses”, or “we’ve a nurse you can chat to as a one off, but their patient list is closed”, or “we can’t help today, call back in a week or so”.
I would break down because I just didn’t know where to turn. One nurse who didn’t even know me suggested I needed “something to take the edge off” – to help with my anxiety and offered a prescription instead.
There just wasn’t anyone I could talk to. There is no formal NHS pathway for neuroendocrine cancer patients, and most hospitals don’t know what to do with us.
I took a friend to an appointment one day – she’d had a different cancer – but she came away with eyes-wide and bamboozled by the lack of “anything” during my appointment. She asked how did I cope?
Neuroendocrine cancer is complex and diverse which creates a place of continued anxiety and uncertainty.
Despite all this, I have been shown immense kindnesses by many healthcare professionals.
Invaluable support eventually came from the charity, Neuroendocrine Cancer UK, and they have helped me educate myself. Without their support, I would probably still be in no man’s land.
Neuroendocrine Cancer UK signposted me to Rare Minds Counselling, also a registered charity providing specialised rare disease mental health support. The relief upon hearing the counsellor speak my new language was immense.
Psychologically, cancer is as exhausting as the diagnosis.
I would like to see mental health professionals working alongside oncology teams, multi-disciplinary teams and in the room with patients on the day of diagnosis.
This should be standard protocol, and not just for those receiving a diagnosis, but for loved ones too. Even just one session for them would be amazing. They experience immense trauma.
I am lost for words about the lack of mental health support for those of us living with cancer. Without proper support, the whole arena is terrifying.
This is why I’m supporting the Daily Express Cancer Care campaign to ensure that all cancer patients get access to mental health support both during and after their treatment.