Living with advanced cancer

First reactions

Some people say the diagnosis of secondary cancer is more traumatic than when they were first diagnosed with cancer.

For people who did not even know that they had primary cancer, a diagnosis of advanced cancer can be a huge shock. It is very common to experience a wide range of thoughts and feelings. These may include shock, numbness, anger, blame, anxiety, fear, uncertainty, confusion, helplessness, hopelessness, denial, irritability, being overwhelmed, sadness, loneliness, disappointment, and disbelief.

Am I going to die?

While we all know we are going to die, the change that happens when you hear the news of your advanced cancer is that you fear that death will be soon. You may fear it will come with pain and suffering.

The challenge at this time is how to live with your cancer and how to get the most out of life.

“There is still a life to be lived, pleasures to be found and disappointments to be had. Living with advanced cancer is a different life, not a journey towards death.” Judith

What do I do now?

Take time and allow the news to sink in. Hearing you have advanced cancer touches every part of your life. You may be unsure what to tell family and friends and what to do at home and work. It may be hard to imagine how you will cope, but in time it is likely your usual resilience will return.

Many people find that the more information they have the more they can feel in control of their situation. Don’t be afraid to ask questions. If you don’t understand or remember the first time, it is fine to ask again.

Some patients and families find it very useful to have some ideas of time. It is very hard for your doctor to give you accurate information as every person’s illness is different. This time frame will be the doctor’s best guess based on their experience of other people with similar disease in similar circumstances. There are so many differences, including what cancer you have, where it is, how old you are, previous treatments, and whether you have other illnesses.

Make yourself the priority. Think about other stressful situations or times in your life and remember the things that helped you during that time. You may be able to use the same or similar strategies to help now.

For some people, going on with life as they normally would is what they feel most comfortable doing.

For other people, it’s thinking about what is most important for them, and perhaps making a list and prioritising. Maybe you have always wanted to paint, or learn te Reo Māori. If you are able to, why not do these things now? For some it will be spending time with family and friends. For others it will be getting their affairs in order, e.g. sorting out their photographs, making or updating their will, or planning their funeral. Other people will not want to do any of those things and prefer to live day to day.

“Although my diagnosis is an incurable cancer with metastases that won’t go away, I still have life and feel its quality can be improved with the right kind of encouragement even if this is temporary.” Dorothy

Hope

A sense of hope sustains us. We hope for things we’d like to achieve in the future; perhaps the birth of a child or a grandchild, a successful career, or an overseas trip. You may have many hopes and dreams for yourself and your family/whānau.

A key aspect of hope is that it leads us to the expectation of a better future. When you have advanced cancer you may feel robbed of hope and it might be difficult to trust in the future. However, in time and with support you may be able to redefine what you are hoping for, and focus on the things in life that matter most to you. You might explore new treatments or take part in a clinical trial as a way of helping yourself and others in the future. You might focus more on planning your life day by day.

Some people say that living in the present helps them get more out of each day than when they were always planning ahead. Using your supports: your close relationships and values can be satisfying. Hope is dynamic and while what you hope for may change as your circumstances change, it is important to keep hope alive.

“Hope is the thing with feathers that perches in the soul And sings the tune without the words and never stops at all.” Emily Dickinson

“You can turn your back on tomorrow and live for yesterday, or you can be happy for tomorrow because of yesterday.” Jill

“At age 49, Ian had an operation to remove a tumour from his bowel, and soon after was diagnosed with cancer of the liver. While the rest of us struggled to come to terms with this news, he was planning his future. These plans didn’t merely stretch into the six months that the doctors had allotted for him.” John

“For me personally what kind of goals can I make? Where to go with life so as to continue to be of use to others and not become a recluse? If the cancer is advanced, inevitably, worse will come. Why project my fortune for today for what may happen weeks or months down the track?” Dorothy

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