Finding out you have an incurable diagnosis can bring lots of different emotions. You may not feel your friends and family members can understand what you’re going through. You may not understand why you feel the way you feel. Jenna is one of our Information and Support Advisors on Macmillan’s Support Line. She is here to talk you through ways to understand and cope with your emotions and mental health.
If you’ve been diagnosed with incurable cancer, it may help to talk. Please remember you can access support in our “Living with incurable cancer” group.
This blog post is a bit longer than our other blog posts here on Community News. This is just to help you access all the information and support you may need in one place. Please feel you can read this at your own pace. To help you find what you may be looking for, use the links below:
Spring can be a time where people are often surrounded with the messages of new beginnings, making plans and intentions for the future. I’m aware it can be an incredibly difficult time for those who have been diagnosed with incurable cancer.
It feels very important to acknowledge initially that not all incurable cancer diagnoses are the same. Some find out they have an incurable cancer when initially diagnosed. Others may be told further into their cancer journey that a cancer has come back or has spread to other areas. Some may have the news that although their cancer sadly cannot be cured, it can be managed, and it’s hoped they will be able to live with the cancer under control long term. Others may be told that their cancer is aggressive. Some are told that their prognosis is uncertain, or devastatingly that they only have days, weeks or months to live.
What’s more, everyone will feel and cope with the news they have incurable cancer in their own individual way. There is no right or wrong way to feel or respond.
I hope the below information will help you to feel less alone and serve as a reminder to be kind and gentle with yourself. I will also highlight some support options to help you find your way through what can feel uncertain and incredibly unsettling terrain.
As highlighted above, everyone is different in how they feel and what they need when coping with incurable cancer. There is no right, wrong, or normal.
Although it may feel easier said than done, please don’t judge your feelings or believe it’s not okay to experience certain emotions. All emotions are valid and valuable, often telling us something about what we need. I don’t underestimate how uncomfortable and upsetting these emotions can be to acknowledge and experience. But, it can be helpful to pay attention and give space to the feelings you have. Feelings may come and go, they may build up or come all at once like a wave. They may shift and then return. This is not a linear process.
Shock, denial, being overwhelmed, fear, numbness, powerlessness, anger, regret, guilt and calm are just some examples of emotions people can describe feeling when diagnosed and living with incurable cancer. This shows the variety in emotional responses news like this can bring.
For some the news may not feel real, especially if the diagnosis/prognosis has come as a shock. You may feel well in yourself and aren’t struggling with symptoms. It might even feel as though someone has made a mistake. Do speak to your team if you feel like this as they should be able to talk you through what is indicating you have this type or stage of cancer.
Sometimes this inability to believe may be called denial. This can feel a very loaded word, but can be offered with no judgement. People can experience denial for many personal and valid reasons. For example, sometimes when something is shocking or overwhelming our mind can want to block this out as a way of protecting us. It’s just too much to take in all at once. This may leave you feeling numb or withdrawn. Often with time and support this news can be processed and gradually be assimilated into our new reality. However, if feelings of denial continue for some time, it can be useful to take time to reflect on this. Feelings of denial may begin to stop you from accessing necessary support. Listen to the concerns of trusted loved ones/professionals, where possible, and try to be open to offers of support.
Similarly, helplessness can come when finding the uncertainty of an incurable cancer prognosis hard to hold. It may be a struggle to accept that now a large part one’s health is in the hands of others. It’s understandable to want answers and explanations. But frustratingly, it often can be impossible to know exactly what has caused a cancer or how long someone has left to live.
In turn, some can feel very scared: as a result of this uncertainty or by thinking the worst, trying to make sense of how things might be. Some may recall upsetting or painful experiences of losing others to cancer. Although drawing on previous experiences is very natural, it’s important to remember that everyone’s cancer experience is individual.
Coping with the uncertainty of prognosis can also mean it feels hard to make plans or to see how to move forward. This can be a very isolating experience to go through, leaving you feeling stuck or rudderless.
As a result, anger can also be a very understandable and common response: at the unfairness of the situation. At not being afforded the future you’d imagined. Perhaps at Covid causing delays in tests and treatment or in going to the Doctor’s with concerns initially. Some heartbreakingly even describe feeling angry at themself for getting cancer - as if it is some kind of personal failing. The success of modern medicine, and our increase in knowledge of what we need to keep well, has endless positives. On the other hand, this has left an unattainable expectation of invincibility for many. To anyone feeling this way, I want to stress it is not a failing of yours that you have incurable cancer. Please give yourself permission to not be tormented by thinking ‘was it something I did?’ or by thoughts of ‘I should have…could have…ought to have….’
Similarly, regret feels an important emotional response to highlight. It can be a painful feeling that sometimes weighs heavy when reflecting on the way one has lived is prompted by an incurable diagnosis. It holds firm that hindsight can be a very valuable but cruel thing. It’s so important to remember that you will have done the best you could at the time with the information and knowledge you had then. It’s also okay, with the wisdom you have now, to wish things had been done differently perhaps, but please try not to punish yourself. Despite it being the only certainty in all of our lives, that we will die one day, it is such a shock to hear. The majority of people can find that they wish they had done or not done certain things or made more of their time. I want to assure you that this feeling is not an automatic sign that you have lived wrongly or not made the most of your life. This is more a sign that life is complex, and contains lots of elements that can restrict or demand our attention and energy as we move through it. If you expected to live to your mid 80’s (as generally many of us do now) it then makes sense that priorities or choices made may be different than if you had the knowledge at the time that unfortunately you would be affected by an incurable diagnosis.
With the myriad of feelings an incurable diagnosis can prompt, explored above, the process of grieving is important to consider. Grieving is often thought of as a thing we do after losing something or someone. However, it can be a key emotional response to the news you have incurable cancer, that may go overlooked but encompasses a lot of the above emotions. You may feel you are grieving for yourself, your health and/or your long-term future.
To come from another angle, it feels important to touch on too, that some people describe a feeling of clarity, and calm on hearing this news which may be unexpected and unsettling. However, this response may stem from understandable roots: from finally having a clear answer after a distressing journey of uncertainty. It may be that by one’s mortality being brought into sharp focus that the things most important to you and/or how you want to live going forward are realised.
Ways of supporting yourself through
1. Reach Out For Support: Talk / Connect With Others / Express:
Do take some time and space to absorb the news at your own pace. But please don’t forget to reach out. This may sound trite advice, but although a cancer diagnosis at any stage can feel incredibly isolating, you don’t have to face it alone. Talking can sound small when faced with something which feels so huge but can be so vital in helping you feel less alone. Talking can help you express and process complex emotions, highlighting where support is needed or areas of concern, helping find your way through.
You might talk to a loved one. Or this may feel easier with someone separate. If so, there are a few options: You could speak with us on the Support Line, with others who are coping with a similar diagnosis or experience via the Online Community or a local Support Group. It may be that you want to access more in depth emotional support through counselling. This is something you could access through your healthcare team, our BUPA partnership, or your local Cancer Support Centre if available in your area.
If talking feels too difficult or doesn’t feel right for you, you can still express yourself and process feelings in other non-verbal ways. You can express yourself by being creative. Things like drawing, painting, making, movement, music, singing, writing, poetry, playing - to name just a few. Trust your instinct or perhaps try something new. It can be surprising what emotion and experiences our bodies are holding which may be hard to access through and words alone. Our Online Community Group Express Yourself may be a good source of inspiration and support.
Some find support and expression in their religious and spiritual beliefs in times of personal challenge and difficulty. An experience of cancer may have affected these beliefs. Your beliefs may be an anchor and comfort at this difficult time or unsettlingly you may find yourself questioning it. This may leave you feeling lost or alone. Spirituality can change and is different to each individual. Perhaps it takes the form of religion, or this is expressed in other ways, possibly linking to a sense of purpose, meaning, relationships or nature. At times like this, you may want to reach out to a religious/faith leader, chaplain, spiritual care coordinator or counsellor, to access religious or non- religious spiritual and pastoral support helpful to you and your specific needs and beliefs. Your hospital, local hospice or palliative care team may have a spiritual support service you can connect with. Ask your healthcare team if this feels important to you.
Marie Curie have some detailed and helpful information regarding spiritual and feeling lost which you can view here.
2. Don’t Pressure Yourself To Be Strong Or Positive All Of The Time - For Others Or Yourself:
You may not have space for the feelings and thoughts of others just now. Although this can be unsettling if you are usually one who is there for other people, or distressing seeing others upset by the news and feeling unable to help, you are only human and there is only so much you can hold.
Many say they need some time and space to process the news themselves before feeling they are able to be there for others which is understandable. If supporting others right now feels too difficult, this is not a failing or selfishness. Please know it’s okay to say when you want to be there for loved ones but can’t just now. Instead, you may want to suggest they access support through the Macmillan Support Line, Online Community or a Local Support Centre or Group instead while you take the time you need.
Some people also share feeling a pressure that they should be making the most of the time they have, yet struggling with feeling paralysed, overwhelmed, or like falling apart. Although distressing, again this is an understandable way to feel. And often trying to push this down or oscillating between the two can leave you feeling stretched thin and like you are failing. If this is troubling you, it is important to access support. Often once those emotions are supported, their hold on us can loosen, allowing you the space to be and to move towards living how you would like to.
3. Gaining Control:
Cancer and an incurable diagnosis can feel as though it has taken away your control. Leaving you feeling powerless and as if you are no longer in control of your body or life. One way of coping can be to identify the things you can control and things you have influence on:
Asking ‘Is this in or out of my sphere of influence/control?’ when something is troubling may sound insignificant but can really help. By identifying whether something is or isn’t within our sphere of control or influence, it allows you to act on the things you can, and permission to be gentle with yourself and access emotional support to help process and adjust to those you can’t.
4. Acknowledge Your Story, Impact, and Legacy:
When able, something else which may help you to cope and be of comfort when diagnosed with incurable cancer would be to take time to reflect and remind yourself of your legacy. This could be the relationships you’ve fostered, a family you’ve created, successes and achievements you’ve experienced. The difference you have made by just being here and being you. Your story that no one can take away. Not even cancer.
Our personal impact and legacy can be easy to overlook, often felt saved for those who have had acclaimed achievements, but everyone has one and reflecting on this can be a deeply powerful and validating exercise.
Receiving an incurable cancer diagnosis can feel such an overwhelming thing to face. We don’t want you to feel you have to face it alone. Although there is no right or wrong way to feel or cope (as illustrated in the variety of emotions and support suggestions discussed above) please do reach out for support when you need it, or even if you don’t- you may be surprised. And know we are here for you for as long and as much as you need us.
Take care.
We’d like to thank Jenna for taking the time to write a Community News blog. We hope that you find Jenna’s support and guidance helpful.
If you have been diagnosed with incurable cancer, there is support here on the Online Community. You can join our “Living with incurable cancer” group. This group is a safe place to talk to other people who are coping with an incurable diagnosis.
You can also read more about coping with results, cancer treatment and your emotions:
If your loved one has received an incurable diagnosis, there is also support for you here on the Online Community. We have a “Supporting someone with incurable cancer” group as a place to find support.
Read more about looking after yourself and your loved one:
