The Milestones After Diagnosis
An uncertain future can feel overwhelming.
We hope this information helps you to handle what's next.
Into the Unknown
Nothing in life is certain. It can be difficult to live with that reality for many months. There are so many questions on the unwanted path through incurable illness. And there may be very few answers for spouses or partners. At some points you might not want to think about what's ahead, and that's OK. Then on another day, you may want to think about the possible outcomes because planning ahead helps you to feel more in control.
There's no "right" way to do this, and it's rarely the "right" time. It's common to live without a timeline during a life-limiting illness. It can feel as though you're in continuous change, which is disorientating and exhausting. And yet, a positive drive to live well and do your best despite the circumstances may also keep you going.
Although each patient and family is unique, we've listed some common experiences here as milestones. You may not experience all of these, and if you do go through them your choices and circumstances will vary. Here's what we found useful to know when navigating the unknown:
Diagnosis
This is the moment everything changes. For many people a life-limiting diagnosis is a shock; it turns everything upside down for everyone who loves the person involved. You may need support with the trauma of this unwanted interruption. Finding ways to calmly communicate and share concerns with others can be a helpful starting point to adjust to your new reality. It's also useful to identify what specifically you can control, your personal priorities and the people who matter most at this time.
Prognosis
An incurable disease changes over time; a medical prognosis determines the likelihood that a patient will recover. And it's always only an estimate. Doctors may be reluctant to give a prognosis, and may only discuss it with the patient if pushed, even though you may want more information. There are often communication challenges around this topic; there's a risk that information is unclear, which can be stressful. You can ask for advice from your GP or palliative team at any time during illness.
Telling People
Talking is an important part of living with an incurable illness. But deciding who to tell and what to say can be complicated. Nobody can tell you the "right" way to connect with the people in your life. Watch this poignant video from Kate about how writing helped her to share her story. An "inner circle" of a few trusted people can make it easier to keep a wider group updated as things change, and access the support you need in the moment. If at least one person knows everything, it can reduce feelings of isolation. Counselling can also help to ease the burden of living alongside serious illness.
Treatment
It can be hard to accept that there's no solution. Incurable illness can be treated to extend quality of life, comfort and longevity. Most patients and their families become experts in the diagnosis and symptoms, to try to access the best available therapies. Online support groups and specialist communities can also help to suggest the latest medical developments and discuss difficulties with symptoms. Palliative care teams are experts in pain management – ask your GP to refer you.
Paid Work
Symptoms may prevent a patient from working and treatment can be time-consuming. Your energy may be focused on your partner's care, but you may also need to do your usual paid job. Not only does this affect your finances, it has an impact on childcare and other responsibilities. You may want to review benefits such as income support, child benefit or carer's allowance. Many employers are supportive, although navigating unpredictable changes in routine is hard for everyone involved.
Caring for Myself
Caring for someone you love also requires you to care for yourself. Beginning to understand how anticipatory grief might be affecting you, helps you to address the emotional challenge and how it drains your energy. You will need to restructure your daily life to allow for changes in your routine, address practical challenges such as childcare, give time to your emotional process, and identify the relationships which support you. We offer suggestions to help you develop your own approach.
Disability
Caring responsibilities can increase if the person you love declines in health. Day-to-day tasks, such as dressing, eating or leaving the house, might become difficult. Substantial, permanent physical deterioration can also impact a person's mental health. There are UK benefits such as PiP to financially support people who become disabled. Each change requires adjustment which can cause stress or grief, and an increased level of care for everyone. You may need palliative or respite help.
Caring to the End
It can be exceptionally difficult to accept that the end is coming. This transition is usually supported by palliative care teams at home, in a hospice or in hospital. The respect and dignity of a dying person is crucial. Often a "respect form" is completed by the patient to record their wishes while they're well. This tool and this leaflet are designed by professionals to help patients plan ahead. If a Will is not already written and signed, it's needed now. Read more about this turning point here.
