Cancer has long inspired fear and been stigmatised for its legacy as a lethal disease. This legacy is so pervasive that, for many of us, just hearing the word ‘cancer’ can automatically make us think of the worst possible outcome. Some cancers may be stigmatised more than others, often born from inaccurate perceptions and fuelled by fears about treatments. Stigma is damaging and has a silencing effect, which can make the journey of cancer very lonely and prevent those living with cancer from sharing the realities of their experience. Perhaps one part that most often gets overlooked is the experience of loss and grief.
While many think of grief as the experience of losing of a loved one, we can grieve any kind of loss. Grief is always a natural response to loss, and life is filled with a wide variety of all kinds of losses. And so, throughout life, we experience many instances of grief. A diagnosis of cancer is no exception. In fact, some may even say that grief and loss are fundamental parts of the cancer experience.
Some losses may be easier to see and name, whereas others may be harder to recognise. Losses may be temporary or permanent, minor inconveniences or life-changing. While they may affect each individual differently, losses can be experienced in all aspects of your being and can all result in the experience of grief.
For many, loss starts with the diagnosis. Receiving a diagnosis of any kind of cancer can be traumatic and overwhelming, bringing with it awful shock and terror. We are often blissfully unaware of our own mortality with many societies being death-denying – we don’t like to think, talk about or acknowledge death as an inevitable reality. So, hearing your name associated with the word ‘cancer’ can send life-as-you-knew-it hurtling out the window. Many survivors describe a feeling of numb panic or a mixture of feelings of numbness, shock, terror, distress, disbelief, anxiety, anger and/or hope.
Like a domino effect, several losses can follow. They may be of a physical nature with people describing loss of good health, changes in appetite, decrease in strength and energy, loss of physical comfort, changes in fertility, changes to outward appearance or bodily changes such as a scar or amputation. Losses related to lifestyle are also common such as a loss of routine or not being able to work or do what was once every day activities. There may be financial losses as a result, with changes in career or job opportunities, financial standing or security. How people react to your cancer diagnosis may also be challenging, leading to social losses with changes to relationships and friendships as well as the loss of certain social roles. And of course, losses can be emotional and/or psychological. Many individuals may face a loss of their sense of security and predictably; feel a loss of control; see changes in their self-esteem, self-confidence and their sense of identity; they may lose hope in their goals and dreams; and question their faith or spirituality. For many people, a diagnosis of cancer can completely change every aspect of their life and send them crashing into one that they no longer recognise.
This neat little summary of the losses and reasons people grieve, many surely unmentioned, pale to the actual experience of dealing with these changes on a daily basis. Yet loss and grief in the experience of cancer, often go unacknowledged. You see, when someone we love receives a diagnosis of cancer, the focus can quickly become on treatment and the practicalities of what can and needs to be done to ensure survival. With this sense of life or death, anything else can, to others, seem trivial by comparison. People also hope and expect that after undergoing all the necessary treatments, the person should put their cancer behind them and go back to life as normal. Grief, and lasting grief, may not even be considered a possibility, despite the power that cancer has to rearrange everything; work, home life, relationships and even how you relate to yourself. So, the real and valid grief that is so often experienced alongside a diagnosis of cancer can go invalidated, minimised or dismissed, making coping with grief during and after cancer extremely challenging.
If you are experiencing loss and grief in your cancer journey, here are some useful tips on how to cope.
1. Acknowledge, validate and normalise your experience
The first thing we can do to help ourselves navigate loss and grief is to acknowledge, validate and normalise your experience as it is. Allow yourself to grieve all the things that you have lost to cancer, be that people, things or parts of yourself. Too many times we aren’t given the permission or space to mourn these losses. When faced with pain, we tend to shut down from it, minimise it or alter it for the comfort of the people around us. The dominant narrative around grief often says that our experiences aren’t normal, which we come to believe as truth. But grief is a normal and natural response to loss, and there is no right or wrong way to grieve. Your thoughts, feelings and experience are real, valid and normal. Allow them to be as they are, without judgment or criticism. Give yourself permission to face your losses, feel the pain and make space for grief.
2. Seek support from people who understand
Sometimes even the most supportive family members and friends cannot understand loss and grief in the experience of cancer, unless they have received a diagnosis themselves. This can often leave you feeling lonely, misunderstood and isolated. It can be really helpful to seek support from people who have had similar, first-hand experiences with cancer and who can truly relate to and understand your experience. A good place to find this kind of support is support groups. Cancer support groups can provide a space where one can share thoughts, feelings and experiences that may be too difficult to share with family members and friends. Being a part of a group can create a sense of belonging and helps you feel more understood and less alone.
3. Be gentle and compassionate with yourself
Grief is a highly individual and unique experience. There may be similarities in how it manifests physically, emotionally, psychologically and spiritually, but no experience will be the same. Remind yourself that there are no rules, no goals or expectations, and no right or wrong way to grieve. Be gentle, kind and compassionate with yourself as you navigate loss and grief in the experience of cancer. Trust yourself to intuitively know what feels right for you in your experience.
4. Go at your own pace
Despite popular belief, grief has no timeline or time limit. You may feel pressure from others to ‘get over’ your grief as quickly as possible so as to ‘move on’, but the reality very often does not work this way. Adapting to and coping with cancer and the associated losses is a process, which neither you or well-intended friends or family should rush you through. Whatever your experience, be patient with yourself, take your time and allow your grief to unfold and be expressed naturally.
5. Be open to dialectical thinking
Dialectical thinking is the idea that two opposing notions can be true at the same time, and is so important when it comes to grief. Humans are complex and experience a wide range of all kinds of emotions. Yet we like to simplify, we like to think in black or white; either or; wrong or right. When we think dialectically, both sides of the same coin can be true at the same time. That is that we can experience more than one, seemingly opposing, emotion or thought at the same time. For example, you can be grieving the loss of a part of yourself AND feel grateful to be alive; you can feel utter despair at the diagnosis AND relief that you know; you can be extremely sad AND laugh at a good joke. The list goes on. Here we can see the importance of the word ‘and’, how it gently acknowledges and includes each real feeling, each truth. One feeling, thought or expression in grief does not negate the other. Instead many can exist together and all be true.
6. Become your own advocate
If you feel called to, becoming your own advocate can help educate the people around you on the realities of your experience and fight against the ever-present stigma associated with cancer. You do not have to conform or be silenced.
7. Seek support from a grief literate therapist
Finally, seek support from a therapist who understands the losses and grief associated with the experience of cancer. Who won’t shy away from the pain, but who is rather willing to sit with you in the vastness of your grief. Who does not pathologise your grief experience but rather normalises all of your experiences. Who will not rush you or pressure you with expectation to move on but who will validate your experience just as it is.
None of what you are going through is easy. Understatement. This may be one of the hardest experiences of your life. There is no quick fix, there is only navigating this abnormal normal. However that looks, however long that takes is normal. One day at a time, one moment at a time, one breath at a time.
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