“There’s a very fine line between living with incurable cancer and waiting to die from it. Cancer for me is a 24/7/365 affair,” says Mandy Mahoney, an outreach support worker from London who was first diagnosed with breast cancer in early 2011.
Mandy, 48, underwent an intensive year of surgery, chemotherapy and radiotherapy before going into remission. But within a couple of years her cancer was back, and she learned it was now incurable. “I’m on my sixth recurrence. This is something I’ll either live with long-term until I die of old age or, in the worst case scenario, it will kill me,” she says.
Separate research by the charity found these patients are more likely than other cancer patients to need support with pain, sleep problems, fatigue, exhaustion, worry, fear and anxiety. Despite these complex needs, however, Macmillan found 77 per cent of patients with incurable cancer – as many as 100,000 people – feel they are not getting all the support they need.
For Mandy, there is a marked difference between her initial treatment and living with cancer long-term. “When it’s a primary cancer, there is still an aspect of hope and a definite end to treatment. The only end I’ve got is one that no one really wants to talk about. It’s a big shift,” she says.
Practically too, despite being on a lifelong treatment plan, Mandy says there is no longer the intensity of weekly or monthly hospital visits. “I’ve been on an oral chemo regime, which you take at home, so you just go away and plod on with it,” she says.