At AXA Health, our Cancer Care team have phone conversations every day with people who have either been diagnosed with cancer themselves or know someone who has, whether that’s a friend or a relative. From questions about the condition to conversations on what to expect from their treatment or recovery.
We know that some of things people say – despite the best of intentions – can be difficult, upsetting or just plain annoying to someone going through cancer. But that there are also times when someone gets it just right and the things they say are really helpful.
Using this feedback we asked people living with cancer to help us create our top tips on how to ‘speak cancer’, to share with those who are going through it and those around them.
Of course, there’s no single language that works for everyone. It has to be about how you want to talk about your cancer experience and how you’d like other people to talk about it with you.
1. A bit of planning can help you take back control
While it’s personal to you, those who put in a bit of thought about how they want to speak about their cancer to others usually find that it pays off. For example, you might want to disclose different amounts of detail to close family and friends compared to people at work or those who you only bump into occasionally.
Practising what you want to say can help you keep control, rather than feeling on the spot when you see them. This could include things like who you want to tell or who you’d prefer a family member to tell for you, whether you tell them the type of cancer you have and how your treatment’s going.
2. Use whatever words work for you
You might develop a whole new vocabulary to help you navigate the medical jargon you come across, or you might find that people want to give you some new labels once they find out you have or have had cancer.
‘Survivor’ is a common label people use, along with ‘brave’, ‘fighter’ and ‘lucky’. While words like these might help some people feel empowered, others might find words like these too heroic for how they feel. There are no rights or wrongs when it comes to the language you use to describe how you feel, but it can help others to understand if you let them know what works for you.
3. It’s ok to let people know if you feel a bit down
Like everyone, you probably have your good days, bad days, and ‘meh’ days. One difference now might be that people assume that your not-so-good days are a cause for concern or a silent cry for help.
When others are determined that you should cheer up, you might be thinking “Why can’t I just be a bit fed-up sometimes, like everyone else?” On the other hand, you might welcome people trying to help.
Letting people know how you’d like them to respond when you’re feeling a bit down can make it easier to get the support you need, so don’t be afraid to say that you just want a bit of time on your own, a cup of tea, or to hear one of their bad jokes.
4. It pays to keep in touch with your boss
It’s likely you’ll need time off work for medical appointments during and after your treatment, so whether it’s by email, phone or face-to-face, letting your manager know how you’re doing and any workplace support you might need can help make things easier when you go back to work.
For example, will you be able to return to your usual work duties and hours straight away, or are there adjustments that would help ease the transition? It’s also a good idea to let them know how you want to talk about your cancer and how much you want your workmates – and even customers – to know.
People sometimes describe a feeling of losing control when a well-intentioned manager or colleague has told everyone about their cancer. So let them know up-front what you want and if you’d find it helpful for them to tell others on your behalf.
5. Don’t feel pressured to move on before you’re ready
With partners and loved ones there’s more opportunity over time to learn the best way to ‘speak cancer’ with each other. You might find that your partner wants to move on quickly and make cancer a thing of the past, particularly at the end of your treatment. But this eagerness and encouragement to put things behind you may not reflect how you feel.
Some things to consider…
Reaching remission can be a great relief but there’s also the emotional impact of transition back to ‘everyday life’. Don’t feel pressured to move on before you’re ready – take the time you need to think about what the next phase of your life looks like. Then, importantly, let your partner and loved ones know as soon as possible.
- Are you ready to move on, perhaps doing things differently? Do you just want things to get back to how they were as quickly as possible? Or maybe you don’t feel any different just yet and need time just to process all that you’ve been though before you can start to think about what’s next.
- Do you want to talk about your experience or would you rather never mention cancer again? Or maybe a hug – rather than words or avoidance - is what you need to feel better.
- What if you’re having a bad day? Do you want people to try to snap you out of it/cheer you up/distract you, or would you rather they left you to your own devices/didn’t make a fuss, because we all feel a bit down sometimes.
6. Remember, you’re not alone – support networks can be a great help
It’s not unusual to feel isolated when you have cancer – what’s happening to you is a very personal experience, no matter how many of your family and friends are by your side.
You might find comfort in talking to others going through the same thing – whether it’s a group of people at work who are living with or have had cancer, a charity support group or a network of people with the same type of cancer as you that you meet at the hospital.
There are also lots of online resources that can help you feel like you’re not alone. For example:
- AXA Health’s Cancer centre contains a range of information and articles about cancer, to help support you and your loved ones through your cancer journey.
- And if you have a question about your diagnosis, treatment or any other aspect of your health, or simply want someone to talk to, our Ask the Expert team are there for you - whether you’re an AXA Health member or not.
- Macmillan provide guidance that can help with all stages of cancer Cancer information and support - Macmillan Cancer Support. They also have an online community where you can join group discussions for information and support, blog about your experiences or even ask one of their experts a question of your own. Macmillan Online Community – Cancer Forum & Emotional Support.