A 20-year-old man with an inoperable brain tumour has spoken of his anger after MPs voted against the assisted dying bill. Noah Herniman, from Falmouth, stopped chemotherapy last year after suffering severe side effects.
He said: “I was genuinely hopeful that the bill would pass. It’s the right thing for me; for everyone who has to suffer. And so I’m really angry that I don’t get the decision to make this choice over my own life.”
Diagnosis and treatment
Noah has neurofibromatosis type one, a genetic disorder that causes non-cancerous tumours to grow. His brain tumour was found during a routine MRI scan in July 2021.
He said: “My mum was completely speechless and in a state of shock. I, on the other hand, had prepared myself for the worst. You’re never called in for good news. I asked if they could operate on it — it was a no. I asked if I was going to die and I was told ‘most likely’. The only option of hope I had was chemotherapy, which would work to halt growth of the tumour.”
Noah endured 166 weeks of chemotherapy before deciding the side effects were too much. He said: “I suffered every single side effect under the sun. I had burns, hair loss, nausea, lost my appetite, had to be fed via tube and was left in a wheelchair.
“I feel my teenage years were robbed away from me. I’ve undergone extensive chemotherapy and I refuse to go through any more. It’ll only continue to grow regardless of what I do. And when it does – I’ve made my final decision.”
Bill rejection and future plans
The Terminally Ill Adults (End of Life) Bill — backed by the Express Give Us Our Last Rights crusade — fell last month after MPs voted against allowing it to progress by 286 votes to 270.
Noah’s condition is currently stable and he recently started studying at university. The aspiring actor said that when it worsens, he will travel abroad if necessary. He explained: “There is no way in hell I am going through a slow or painful death. I don’t care if I have to go to Switzerland, or what laws I break. But when it’s my time to go, I want to die on my terms with dignity. I’ve backed that I want to go through assisted dying ever since I was diagnosed. While my mum wasn’t on board, understandably, it’s not her decision to make.”
Noah’s mum Shelley was “totally against” the idea at first. She said: “I’ve done a full circle. Even when Noah said it to me, I told him there was no way he would ever be going through with that. I brought him into the world; I don’t want to agree to take him out of it. But the more time went on, seeing how much he suffered through chemotherapy, my opinion changed. I’m always hopeful that it won’t ever grow again by some miracle and it’s a decision we’ll never have to face.
“Noah is adamant that this is what he wants. And who am I to strip him of the freedom over his own body? It’s something I wish the MPs who voted against the bill would question, too.”
Shelley said she recently watched a family die while receiving palliative care, and it “wasn’t pleasant”. She added: “I certainly don’t want Noah to go like that. It’s not about those with disabilities, or someone deciding to end their life because they’re fed up; it’s about people with terminal illnesses.
“Noah’s fighting for what he believes in — for the future of others, himself and those who are unable to benefit and die on their own terms. He wishes to have a full life and have a successful career as an actor in television and film. He dares to dream, most importantly.”
Noah added: “In the time I have left, I’d love to become the next Doctor Who or at least become a famous actor. Most importantly, I want to make the most of being able to go out and live my life before time is up. And, when I choose for it to be so, I hope my family would understand that is the best choice for me.”
