"Let's talk about the Big C"
Friday 5 August 2022
Lucy King offers her tips for speaking with people who have cancer, drawn from her own experiences.
As a fellow cancer patient, I watched Dame Deborah James’ honest conversations about bowel cancer with gratefulness, admiration and huge respect. She left an incredible legacy in instilling the need to recognise the early symptoms of cancer and to waste no time in seeking medical help, particularly when it comes to cancers involving often-unpleasant bodily functions. But her legacy mustn’t stop there. The next cancer taboo I’d like to break down? How to talk, openly, honestly and frankly to friends or family members who have it — even when life is busy, complicated and you’re not sure if they want to hear from you or not
I was diagnosed with metastatic colorectal cancer in February 2020 and despite having experienced nothing more than abdominal pain for a couple of months, the cancer had already spread to lymph nodes and is regarded as being incurable. The two years since have been painful, scary and often incredibly lonely, but for me, the way certain friends have responded (or not) has been far harder to accept than the seemingly endless round of operations, treatments and procedures.
I can’t blame those friends fully: talking about cancer still feels like a difficult subject for many people, despite current data suggesting that one in two of us will experience some form of cancer during their lifetime and therefore almost all of us being affected. And while professional help is available, I’ve quickly learnt that it’s the perceived support of family and friends that can be so vital in keeping spirits raised.
So I’d like to share some advice on how to talk to those people, based on my two-year cancer journey so far. Please share with those who might need it. It might just make a bigger difference than you think.
Respect the patient’s choice
Everyone deals with a cancer diagnosis differently. Some people might wish to tell everyone they know; others might choose to keep it private at first and tell people in their own time. Being asked to do the latter and remain passive might feel difficult and seemingly “uncaring” at first, but it’s important to respect a patient’s decision.
In my experience, the best way to be supportive is to send a brief but reassuring message along the lines of “remember I am always here for you if you ever do want to talk about anything”, then leave it to them to open the conversation.
Saying something is always better than saying nothing
Some people might wish to be private about their cancer, but once a friend or family member has told you about their diagnosis, one big rule: don’t avoid the subject, and don’t leave them to reach out to you.
I sometimes felt that I was being too ‘needy’ yearning regular encouragement and support from friends and family for fear of adding to their existing anguish, but dark thoughts and fears can pervade the brain 24/7 after an incurable diagnosis. It’s only natural that you’ll want to talk (and probably overthink everything, if you’re like me and feel your life has been turned on its head overnight).
The biggest thing I’ve learnt from living with cancer is that most people simply don’t know how best to deal with someone living with cancer, and therefore often adopt the easiest option: avoiding it altogether, when that be the person or the subject itself. Friends I’ve known for 25 years have made very little contact in the past two years, showing no real interest or purpose in my diagnosis other than the occasional “hope things are going OK with you?” in an email about something else.
Others, even close friends, have let a whole coffees and lunches go by without a single mention of the elephant in the room. In the early stages of my cancer, I found this apparent lack of interest particularly hurtful and upsetting. It didn’t feel like the behaviour of a real friend in times of adversity. I still feel let-down and disappointed by some of them two years on.
For most people guilty of this, this avoidance is probably a case of not knowing what to say or being concerned about saying the ‘wrong’ thing’ - as I’m ashamed to say I once did, before my own diagnosis. Many years earlier, I saw an acquaintance with cancer from a distance, but deliberately chose to avoid them for fear of simply not knowing what to say. I now know that what that person probably really wanted or needed to hear was firstly some acknowledgment of the situation followed by some empathy for their position.
As a cancer patient myself now, my advice is simple: nothing you can say or do will cause more upset than saying nothing at all. Don’t worry too much about what you say, as long as you make the person living with cancer feel that you are interested and you do care. With the benefit of hindsight, what I should have said to the acquaintance I knew with cancer - and what I’d like people to have said to me - was: “I’m really sorry to hear of your diagnosis. How are you at the moment?” It shows recognition of their situation but also allows them the chance to shut down the conversation with a simple “I’m OK thanks”, or to expand further if they want to share.
Find ways to show you’re thinking of them — even if it’s just a picture or emoji
Many people have said to me “I think about you a lot” over the last two years. It’s a lovely sentiment, but how could I have known? In the lowest moments, I’d have loved to have been made aware that support was there, whether it was a one-line WhatsApp message or even a simple picture or emoji — a crossed fingers on results days, a bouquet of flowers to brighten spirits, a thumbs up or a kiss when you know they are struggling. It’s amazing what a difference one can make when you’re having a bad day, just to know you’re not alone.
Cancer often demands regular treatments. The best of my friends make a simple note on their phone as to when such treatment or procedure is to take place and send a simple fingers crossed emoji or similar beforehand or check in afterwards. It takes five seconds, but makes more difference than they will ever know.
Show an interest in their life (cancer treatment included)
The cancer journey can be all-consuming and one of the biggest feelings can be envy that other people’s lives are continuing unaffected. So make sure you show an interest in a cancer patient’s enforced new lifestyle, even if it’s just how their treatment is going, how they’re adjusting to going part-time at work or how they’re finding the effects of the chemo. A life with cancer is still a life - ask about it.
Don’t worry about how close (or not) you were to that person before the cancer diagnosis
Whilst my experience has questioned some friendships, it has also been invaluable in making me realise just how special some people are, even if we didn’t have close friendships before. Two family members, neither of whom I was particularly close to prior to the diagnosis, have been particularly amazing in my case. Both message me several times a week just with a simple emoji or a reassuring few words and they always remember appointments. Their support throughout has been so helpful to me. We must all strive to be like them.
Ask about feelings, not just facts
In my experience, even very good friends are still often wary or reluctant of asking probing questions. I was a listening volunteer for the Samaritans for many years and have several good friends who were also trained in exploring someone’s real feelings. Perhaps it’s not surprising that some of those friends have been particularly supportive during my journey. But admittedly even I was initially shocked when, soon after being told that my cancer was incurable, one of these friends immediately asked how that news actually made me feel. I was grateful to her for being so bold and since then she’s continued to illicit deeply-held sentiments that I’ve probably not shared with anyone else.
More recently, when I was told that the cancer had ‘re-activated’ (which I found much harder to deal with than the initial diagnosis), she again asked the same question. Through my sobbing I said that I couldn’t really explain it and with such tender compassion she came and held my hand and asked me just to try and that helped unlock some of the thoughts rampaging through me at that time. It meant more than I can say. She held my hand and asked me to try and explain how my cancer news made me feel — it meant a lot.
If you feel able to do so, try going one step further and ask how your friend or family member is really feeling about living with cancer. Perhaps reassure them that it is totally fine to cry or shout or express whatever emotion needs to be aired. Pent up emotion is never healthy and this will give the person the opportunity to really be honest — both with you and possibly themselves too.
Read more about Lucy’s experience of bowel cancer here