Living With Incurable Cancer
This page is written for individuals with incurable (sometimes called terminal) cancer, but it may be helpful to those with other life-limiting conditions, as well as family members, carers and friends.
Being diagnosed with incurable cancer can be difficult to come to terms with. Remember that Healthcare Professionals in your medical team are here to ensure you have the best quality of life. Their goal is to support all aspects of your wellbeing, including offering ongoing medical treatments where appropriate, whilst ensuring that your preferred preferences about end of life care are listened to.
Knowing that you have an incurable condition can take an emotional toll on you and your loved ones. You may feel overwhelmed with difficult feelings such as shock, fear and anger; these are normal responses. Allowing yourself to feel some or all of them can be the first step towards coping with what is happening. It is also important to perhaps try and understand why you may be experiencing these emotions.
Understanding and Coping with your Emotions
This section outlines some of the common emotions experienced by those with incurable conditions. Please note that it is not inclusive of all feelings that individuals may experience.
It is natural to feel shocked when you have been told that there are “no more treatments available” or that “the cancer has advanced too far”. The reality of "end of life" or "nearing death" may take some time to process for both you and your loved ones. You may also experience thoughts of “this can’t be happening”, “this wasn’t meant to happen to me” or “this wasn’t what I planned”. Unfortunately, it is not possible to plan your life out completely; the shock of hearing bad news may leave you feeling sadness and grief for the loss of the life you had planned.
Talking to someone about these feelings can help you to make sense of how you are feeling. If you are spiritual, perhaps connecting with your faith may help you come to terms with your diagnosis. This may take a while and is commonly an ongoing process. This may depend upon the meaning you place upon the term "end of life" or "death and dying".
It is normal to feel angry; this diagnosis is not what you had expected, and it can also feel unfair that this has happened to you. Whilst you have every right to feel angry, it can often be a barrier to taking action where it is needed. It may be helpful to try and channel this anger towards solving problems within your control, re-connecting with your values and making the most of the life you have.
Trying to pinpoint which aspect of end of life/death/dying you fear can help you to manage it better, and others to support you as needed. For example, if you are afraid of how your family will cope without you, sharing this with your family and loved ones may help to provide you with some comfort and peace of mind. Indeed, talking about your fears to Healthcare Professionals and family/friends will allow them to help you find ways to cope and ease some of the uncertainties. This can feel very difficult to discuss with family, as you may fear upsetting them, and they may want to close down the conversation to reassure you. However, it is likely that you all have the same private thoughts and fears and the more you can discuss these openly, the more you can support each other with them and make helpful choices.
Despite having people around you at a difficult time, you may still feel lonely – this is understandable and can be a feeling that is different to any others you have experienced before. Try to share how you are feeling with those around you. If you do not feel comfortable to speak to family/friends, it could be helpful to have these discussions with medical staff around you e.g. hospice nurses, cancer nurse specialist or a clinical psychologist. Sometimes it is easier to connect with your healthcare team. They will take a non-judgemental approach when listening to how you are feeling and can problem-solve ways to reduce unwanted thoughts and emotions.
You may experience guilt if you feel that you haven’t met your expectations in life or that of others. For example, there may be tasks that you have not completed yet or planned activities that you will now never be able to do. Additionally, you may be feeling guilty about events in your life that you wish had not occurred. Dwelling on the “should haves” or “should not haves” may stop you from being able to focus upon the here-and-now, and embracing the life that you have left.
Sometimes it is more helpful to accept what is out of your control; let go of what cannot be changed and start making changes today. Consider the idea of forgiving others and yourself, spend time with your loved ones and strengthen these connections. You could even write letters or leave audio/video messages for those important to you, so that they have positive memories of their time with you. The following Serenity Prayer may be helpful for encouraging you to stop feeling guilty about the past and focus now on what is important to you:
“Grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And the wisdom to know the difference”
- Reinhold Niebuhr
Taking Control Back
One strategy to feel more in control is planning activities that you want to achieve. Creating a plan and setting goals, no matter how big or small, can help to manage unhelpful thoughts and stop your life revolving around ‘dying’. Planning can encourage you to be more present and focus on things that matter to you.
There are also useful exercises/techniques that you can try to help feel more in control of your emotions e.g:
- Mindfulness exercises can be useful to focus your energy on the here and now. It is easy to be stuck in difficult memories from the past or worry about what is going to happen in the future, but it is important to remind yourself to stay as present as possible. If you are interested in trying Mindfulness exercises, click here http://bit.ly/ActandMindfulness
- Keeping a journal may be a useful way to relieve negative feelings or acknowledge any changes you may be seeing within yourself or others, and considering ways to adjust to these.
- Complementary therapies may help you relax.
- Support groups are available where you can meet individuals who are going through a similar difficulty and share experiences with one another. Here is an online community group for individuals with incurable cancer: https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/discussions . Another specifically for discussing the impact of end of life https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/end-of-life/
- You may also want to access emotional/psychological support.
You may wish to prepare for your death by thinking about how you can leave a legacy behind.
- Write letters to people who are important to you
- Make a video/audio recording to be given to family members after death
- Write down family history for generations to come
- Create a scrapbook
- Memory boxes – This can include: letters, sentimental items, jewellery, photos, or even gifts to mark a special birthday of a loved one. For more ideas see https://www.macmillan.org.uk/cancer-information-and-support/treatment/if-you-have-an-advanced-cancer/end-of-life/making-a-memory-box
- Life story book
- Making a will For more information see https://finance.macmillan.org.uk/wills-and-estate-planning/making-a-will
All of these tasks can either be done alone, as a group or an activity with younger family members. It is important to try and make these activities a positive experience, reflecting on the life you have lived.
Achieving everything on your ‘bucket list’ is not essential, and it does not matter if you are unable to tick everything off. It’s important to remember what matters during this difficult time and we would encourage you to appreciate the moments you have with loved ones, rather than the goal itself.
For more insight into managing difficult thoughts and feelings in relation to end of life, we recommend watching Jo’s video from 29:39 where she discusses planning for death and end of life care. This can be accessed via http://bit.ly/JoTedstone