Talking with loved ones about your cancer
Lung cancer doesn't just affect the patient, it affects everyone around them. Natasha Loveridge shares her experience of talking to her family and especially her children about her disease. If you would like to learn more about Natasha’s experiences, she recently recorded a podcast with the Roy Castle Lung cancer Foundation which is available to listen to now.
How did you tell your loved ones about your diagnosis?
This is a question people often ask me. To be honest, it's probably the most difficult thing I have ever had to do in my life. There's no right way of telling your family and friends about your diagnosis. Every person is different; every relationship is unique; everybody responds and reacts in their own individual way. There is no right or wrong way - what is right for one person isn't necessarily right for another.
I personally chose to be incredibly honest with my family and closest friends right from the beginning, and I'm really glad I did because I found that the support they gave me helped me through my diagnosis period. It was the 10 year anniversary of my father-in-law’s death from lung cancer. I received a phone call at home from a consultant at Leeds' Chest Clinic saying that they were going to start investigating the shadow on my lung for cancer. I remember saying to the consultant, "How can I tell my husband on the anniversary of his father's death?" She strongly advised me to be honest and open with my husband as I would need emotional support during the diagnosis journey. She was right, I told him that day and he said that he was glad I did - he didn't want to be shut out, he wanted to be involved and fully informed.
I have two very intelligent, bright, astute teenage daughters. When I started to have to attend appointments, have time off work, not be allowed near them after PET scans etc., they started to ask questions. I had to be honest; I couldn't lie to them. I told them that we hoped it was an infection but we couldn't rule out the more serious option of cancer. The girls have since thanked me for being honest with them from the outset. They were glad that they had been involved; it made the final diagnosis easier to process and it came as less of a shock.
We have always tried to remain hopeful as a family. By telling the children in my own way, it meant that they didn't scare themselves by turning to Dr. Google. I was able to reassure the girls that the treatment options are good and although the disease is incurable, I can live a full life with it. In fact, it is like living with a chronic illness. If anyone needs guidance on how to talk to their children about their diagnosis, The Ruth Strauss Foundation has resources to help.
I also decided to share my diagnosis more widely via facebook and whatsapp and let social media do the hard work for me. By doing this, I was able to control what people knew and it meant that I didn't have to keep repeating my story.
As a family we have really pulled together and have tried to support each other in the best way we can. Lung cancer doesn't just affect the patient, it affects everyone around them. We are all in this together. On the day I received my stage 4 diagnosis, we sat around the kitchen table and talked about the fact that we have to all look after each other and work through this together. There are some days when we are all feeling strong; there are some days when maybe one of us is feeling particularly vulnerable; there are other days when we may all feel like our world is crashing down. There are days when we want to talk and other days when we don't want to talk. Some days we decide that we 'don't want to do cancer today'. We talked about the fact that we are going to feel different things at different times, and it's our job to support each other, give each other space if we need it, listen if someone wants to talk, hug if someone needs it.
It's inevitable that some days are going to be harder than others. At the moment, I am lucky enough to be stable but if and when I get progression, I'll probably feel just as I did when I first received my diagnosis. I am so grateful that I have a loving and strong support network of friends and family and I understand that this isn't always the case for everyone in my situation.
As I said at the beginning, even though I chose to be transparent and involve my close family right from the beginning of the diagnosis process, this may not be the best option for others. Everyone is different and everyone deals with the news and how they tell people in a different way - it's not one size fits all.
Natasha Loveridge, Trustee
Sources of further help:
EGFR+ UK offers all our members access to both individual and group support that is fully funded by the Charity. To access this support, join the private Peer Support Group where you will find further information.
The Ruth Strauss Foundation is a Charity whose mission is to offer emotional support and guidance to all families where a parent has received a diagnosis for a cancer that cannot be cured. They have a range of downloadable resources on their website and other offerings to support families and their children.
All of the following is taken from the Ruth Strauss Foundation website with their permission.
Jenni Thomas OBE, Grief Counsellor and RSF Support Advisor, shares 10 helpful insights for parents faced with an incurable diagnosis.
If you have recently learned that the cancer you have been diagnosed with cannot be cured, you may be concerned about whether to tell your children and what you need to tell them.
What to say to your children and how to say it will depend on the age and their ability to understand.
You and those closest to you may have different views on how to communicate with your child. However, if there are two parents, it will give your child peace of mind knowing that you and your partner agree on what you are saying.
Talking to your children about not having long to live is the hardest conversation any parent will have.
Before you talk to your child, give yourself time to think through what you will say and get support for yourself.
Think about the impact it will have on you as well as them. Talk it through first with your partner or someone you trust.
Evidence suggests that if this difficult conversation is approached in the right way, it is helpful for both children and parents.
10 Support Steps
1 Inclusion
Children who have experienced the death of a parent or prime carer and who have been told what was happening, have said they were pleased they were included and would not have wanted to be left out of something so important.
2 Emotions
It is alright to show some emotion when you talk to your child, but try not to be too emotional. Children learn how to be by watching the adults around them. It’s ok for them to be upset. Note that some children will show no emotions, while others may cry. Remember, there is no right way to be sad and grieve.
3 Time to Talk
Choose a time to talk to a child when there are no other distractions. It is better not to do this at bedtime.
4 Find Out What They Know
Start by asking what they know about your illness. They may have overheard or been told things that need to gently be corrected. For example: cancer is catching.
5 Keep it Short
Children manage things better, that are difficult to talk about, when the conversations are short. They can usually only manage a little at a time – especially when it’s sad news.
6 Give Comfort
Being physically close and having a hug if the child wants comfort, can be comforting for you both .
7 Use Real Words
Use words that are a correct description of your situation.
For example: ‘Mummy’s cancer is not getting better; the doctors and nurses have done everything they can to make me well again. This means I may not be able to do all the things I used to do. I may not live for very long."
If children ask whether that means will you die, it’s important to be honest and gently say yes, but letting them know that no one knows when exactly it will be.
8 After a Difficult Conversation
Always allow time to do something with your children that they enjoy, after talking to them about your diagnosis, like reading a story or playing a game with them. Children need to continue to have fun, to laugh and see their friends and go to school.
9 Talk to Their Teachers
When you have spoken to your child about something as important as dying, talking to their school teacher about how you’d like the situation managed for your child is essential.
10 Build Lasting Memories
Children may need to be encouraged to do small kind gestures for the ill parent. These gestures can create lasting memories for a child, by allowing them to be involved and kind before a parent dies.