Hearing that your cancer is incurable can be incredibly difficult. You may find it hard to think clearly, or may be in shock, even if you were aware that your cancer was progressing. Here we provide information to help you share the news with your family and friends, and suggest ways to create precious memories with your family and plan for your children's future.
Sharing the news with family and friends
Hearing that your cancer is incurable can be incredibly difficult. It's not unusual to feel both shocked and unsurprised by the news.
Some people might want to be alone at this time to help them absorb and process the news. Others might wish to spend more time with the people who are closest to them to talk about what is happening. Or you might not know how you feel. There's no right or wrong way to share this news with others, or what you choose to share. You might want to wait a few days before you tell others, and you might then only want to tell close family and friends. You might even want to ask someone close to you to let others know on your behalf.
The reactions of others
You might find that talking openly and honestly to others about your diagnosis can be a great help in coming to terms with what is happening to you. But perhaps this is a frightening thought and you are worried about the reactions of your friends and relatives. People who love and care about you might feel shocked and upset at hearing that your cancer is no longer curable and you might find yourself feeling as though you need to look after other people's emotions as they deal with your news.
Some women find that talking to a professional – a counsellor or their clinical nurse specialist (CNS) – helps them feel more able to prepare for these conversations. You might also want to encourage those close to you to speak to your CNS to help understand your diagnosis and some of their own anxieties. Target Ovarian Cancer's support line and your CNS can provide information about where family and friends can find additional support.
Spending time with people you love or care about and doing the things that mean a lot can help to make this time special. Some people find that taking control of practical things such as decisions about treatment and planning for the future also helps them to make sense of their news.
Relationships with your family and friends
Family and friends can be a tremendous comfort and support, but you may feel torn between leaning on your loved ones and feeling that you're a burden to them.
Even if you have the support of your family, friends or partner, you may still be feeling isolated or your self-esteem may be low. This is a common experience particularly if you're worried about the future. Spending more time with family and friends is something that might help. If you can, talk to your loved ones about how you're feeling. People close to you will want to support you, but they may not feel confident about how best to do this.
You may feel that people are trying to control your life by 'wrapping you up in cotton wool' and trying to make decisions for you. If this is happening and it's not what you want, you need to let them know.
You may feel like you're looking after those around you by protecting them from the reality of your situation. This is quite likely if you're used to putting the needs of others before your own. But now you need their support. If you don't feel comfortable asking for this from those close to you, there are others you can turn to. Try speaking to your CNS or palliative nurse, the local hospice, a counsellor, your GP, or a combination of these.
Often your partner, family or friends will take on the role of caring for you when you need extra help. Communicating with those who care for you, including your medical team, about what is important to you is essential. Sometimes a CNS from a palliative care team or hospice can support you through this conversation with your family by helping you gather your thoughts, or by being involved with a family discussion.
It's also important to share with those close to you who's who in your hospital team, your hospice or palliative care team and your GP. Making sure that people have this information means they can get in touch with your medical team on your behalf if you wish.
Creating precious memories
This information was provided by Dr Ros Taylor, who has worked with families at the Hospice of St Francis in Berkhamsted and The Royal Marsden Hospital.
We know that those who are left behind hugely treasure memories that have been crafted and created especially for them – this is especially important for children. There are so many creative ways to continue your voice, your hopes, your dreams into the future, and your children or grandchildren will truly treasure this.
It can be really uplifting work but it's also sad and emotional. We have often found that it's best to work with a close friend or family member, or perhaps a hospice nurse or therapist who will have the skills to help you.
There are so many simple, creative ways to capture memories. Involving the children will make the work even more special and keep your memory alive. We know from the work we do with children who have lost their mother how important this is. Children often talk about the creative times when their mum was ill – times of real closeness.
If you have young children you may want to consider creating a memory box for them – a special box filled with photographs, memories, treasured objects or souvenirs from trips – whatever you want your children to remember about you and your relationship with them. This can be heartbreaking to do, and easy to put off, but is really treasured by children.
You may want to leave letters to be opened on every birthday. We know a young mum who left a special sum of money in her will to buy Christmas presents for her children every year.
It's so easy now to make videos on our phones, capturing special moments, or simply sharing thoughts and hopes for your children, perhaps telling a favourite story or remembering a holiday.
There are growing number of mobile apps that can help you collect photos, messages and music on your phone. There are also guides as to how to manage your online assets, to ensure that your messages, photos and social media accounts are saved. The website Dead Social can help advise you about digital end-of-life planning.
Planning a future for your children
There are often huge practical concerns about your children's future care, particularly if you are a single parent. These may feel like unbearable conversations, trying to imaging your child's life without you – but it's so important to make your mark on these plans. You know so much about your children, what makes them tick, their likes, their hopes and their fears.
Once you know who will be your children's guardians in the future – whether it is your husband, partner, sister – there's so much information you could share that would make the job of bringing up your children easier for those who have that honour. For instance, we remember a mum who was really worried that no one could do her daughter's hair properly – her husband had simply never learnt how to plait it and she was worried that this would be a source of distress. Of course she taught her husband how to do it. These treasured moments can actually bring you closer and make you feel more at ease that your children's lives will perhaps be disrupted a little less.
We know how resilient children are in the fact of loss but we also know how keen they are on routine. It's these routines that need passing on in a systematic way to those who are going to have a big role in your children's lives in the future.
If you need professional help to plan your children's future, or just need advice on how to talk with them, then the local hospice may be a good place to start. If you don't have a hospice near you, your child's school or your local GP will know of local support services.
Support for your children
There are wonderful books, apps and websites that can help children of all ages who are facing loss. These include:
- Winston's Wish
- riprap – for teenagers who are facing the loss of someone special
- The Story Cure by Ella Berthoud – a book that suggests stories that help children with all sorts of difficulties they might be facing.
This information is reviewed regularly and is in line with accepted national and international guidelines. All of our publications undergo an expert peer review and are reviewed by women with ovarian cancer to ensure that we provide accurate and high-quality information. To find out more take a look at our information standards.