By Dr Erin Hope Thompson
When people think or talk about grief, we tend to imagine it beginning after someone dies. But for many people living alongside a partner with cancer, grief begins much earlier.
Long before bereavement, there are countless losses to navigate. There is the loss of certainty, the loss of the future you imagined, changes to your relationship, changing family roles, and the gradual recognition that life is no longer going as planned or expected.
Many partners tell me they sometimes feel as though they are grieving while the person they love is still here. This can feel confusing, but it is a very natural and common response to experiencing so much change and loss while living alongside cancer.
Grieving the life that is changing
One of the hardest aspects of cancer is that it rarely arrives as a single event. Instead, it often brings a series of losses over months or years.
You may find yourself grieving cancelled plans, or the future you had quietly imagined together. Perhaps your roles within the relationship have shifted. Maybe you’re now managing medications, appointments or finances, or doing practical tasks your partner once did effortlessly.
At the same time, you may find yourself watching someone you love gradually change, physically, emotionally or cognitively. Although they are still present, you may already feel you’re losing parts of the person you once knew. These experiences are genuine losses, even though no death has yet occurred.
Living with uncertainty
Perhaps one of the greatest emotional challenges that can come with anticipatory grief is uncertainty. Uncertainty tends to breed anxiety.
Cancer often creates a life lived between scan results, appointments and waiting rooms. Just as one period of treatment finishes, another question arises. For this reason many people describe never quite being able to relax because they don’t know what comes next.
Psychologically, uncertainty is incredibly demanding. Our minds naturally search for predictability because it helps us feel safe. When certainty isn’t available, it’s common to swing between hope and fear, feeling optimistic one day and terrified the next.
People sometimes criticise themselves for this emotional back-and-forth, believing they should stay positive all the time. However, human beings are capable of holding two truths at once: hoping the treatment works while fearing it may not, and feeling grateful for today while mourning what tomorrow might bring.
When caring becomes part of the relationship
As illness progresses, many partners gradually take on more of a caring role. While caring can be deeply meaningful, it can also change the relationship in ways people rarely talk about. Many partners would never describe themselves as a ‘carer’. They simply see themselves as someone looking after the person they love. For some, being given the label of carer can feel uncomfortable or somehow fail to capture the relationship they are actually in.
You may feel responsible for everything, appointments, medications, household tasks, emotional support, while quietly putting your own needs to one side.
At the same time, another delicate psychological balancing act often begins. Many people desperately want to help their partner maintain as much independence as possible because they know how important dignity and autonomy can feel. Yet they may also recognise that increasing dependence may become inevitable.
Alongside this, many people find themselves caught between wanting to make every remaining moment count and wanting life to feel as normal as possible. They may long to create special memories, say the things that matter most or even begin saying goodbye in subtle ways. However, these types of conversations are never easy to have, and there may be worry that doing so will upset the person they love or make it seem as though they have lost hope.
They may find themselves spending more time together while simultaneously grieving the reality that time is becoming increasingly precious. They try to live fully in the present while their minds keep drifting to a future they don’t want to imagine. These emotional tensions are exhausting because there is no perfect way to navigate them. Often, we are just surviving.
For younger adults, these pressures can feel even sharper. Many imagined that something like this might happen “one day”, in a distant future, not now. Friends and peers may be busy with careers, travel and starting families, so there may be no one around you who has been through anything similar, which can be isolating.
The grief no one talks about
A lot of what we are discussing is often referred to as anticipatory grief. Despite the name, anticipatory grief isn’t simply grieving a future death – it is grieving all the changes that are already happening now.
It is trying to prepare emotionally for something you desperately hope won’t happen. For some people, even allowing themselves to imagine that future can bring guilt. They may worry that thinking about life after their partner dies is somehow disloyal, or that preparing themselves for the possibility means they have given up hope.
Importantly, experiencing anticipatory grief does not mean you have given up hope. Hope and grief can exist together.
Looking after yourself along the way
Most people do not seek emotional support until after bereavement, but it shouldn’t only begin after someone dies. If you’re living alongside cancer, your well-being matters now.
If you can, talk honestly with people you trust rather than feeling you have to protect everyone else from your emotions. Allow yourself moments of rest without guilt, and try to remember that you don’t have to pretend you’re coping all the time. There is no perfect way to navigate loving someone through a terminal illness.
If your partner is in their 20s, 30s or 40s and living with incurable, stage 4 or chronic cancer, Shine’s Plus Ones Circle programme could be for you. Through this, you meet online with a small group of partners who meet weekly for six weeks, with space to talk through different topics and to share what you’re going through with others who understand.
At The Loss Foundation, we believe nobody should have to face these experiences alone. Recognising grief before bereavement isn’t about losing hope – it is about recognising the reality of loving someone through one of life’s most difficult journeys.
About The Loss Foundation
The Loss Foundation is the UK’s only charity dedicated to supporting people bereaved by cancer. They offer free support groups, workshops and resources for adults who have lost a loved one to cancer.
