There has been a great deal written on what to say and what not to say to someone with cancer. Some of my favourite pieces are by Deborah Orr (here), Suleika Jaouad (here and here) and Bruce Feiler (here). Reflecting on these pieces and my own experience, much of this is common to any difficult circumstance, not just cancer.
We are individuals, and react differently to what people say or not say, do or not do. The experience of cancer makes us more sensitive, and we need to look behind some of the clichés that family and friends may use to deal with their own discomfort. We need to think back to when someone close to us had a difficult experience, and how well we handled it – or not – and provided support.
Most writings focus on giving advice to family and friends, with less emphasis on the person living with cancer. Like any aspect of a relationship, the patient and other have a joint responsibility to make it through together, for close and even not so close family and friend relationships. With this in mind, I have come up with the following joint suggestions.
Recognize the Awkwardness:
It is awkward having cancer and telling people. It is awkward for family and friends, who do not know what to say. Accept this, and get over it. Serious illness is part of life, that sooner or later, hits everyone.
For patients, figure out what works best for you: email, phone, or visits. Find a way, through family, friends, blogs (my approach) or other social media, to let people know that you would welcome contact. I personally found email to be the easiest when times were rough, as I could read and respond to messages at my ‘leisure’, whereas phone calls and visits required more energy. As I got better, of course, calls and visits were welcome and more frequent.
For others, take the patient’s lead on how they like to keep in touch, and whether visits are appropriate. Let the person know that he or she is important to you, and that you care for them and their family. This does not need to be a heavy presence, just enough to let them know.
Nothing bothered me more than falling into a ‘black hole’ and being forgotten, and made me realize which friendships were meaningful and which not.
And try to shift from the general ‘Is there anything I can do to help’ to the specific, ‘Can I drive you to the hospital/clean your house/take your kids to school’ offers. As patients, should someone make a general offer, have a concrete suggestion to offer in return. In my case, it was mainly, ‘keep in touch’ and ‘let’s plan a walk together’ when I was up for it, as it was the emotional support that was most important.
Be Open and Honest:
For patients and others, it is all too tempting to downplay cancer and the risks of treatment. At the initial stages, people with cancer are in shock and often denial. Many are not comfortable sharing. Others may be, or may grow more comfortable. Both patients and others need to find the balance that works for both.
For patients, this is particularly so with one’s children and loved ones. Sharing with colleagues at work has its own challenges, depending on the nature of the workplace and relationships. On the whole, it is better to be open and honest, not necessarily on every detail but on the big picture (e.g., my cancer is aggressive, treatment will be difficult, odds are good/not good). I probably shared more than most in my blog – partly to help others undergoing similar journeys, partly as a way of my working through the issues.
For others, avoid false optimism. While it is a normal tendency to say ‘You’ll be ok’ or ‘your worries are unfounded’, that may or may not be true. The person with cancer will have a much more realistic assessment than you. Softer variants may go down better, but in my case of an aggressive lymphoma, with ‘challenging odds’, I just found it irritating: what could I reply, ‘No it won’t!’
If the patient starts discussing their worries (normal under the circumstances), hear them out and don’t dismiss them, and transition to acknowledging them by saying something like ‘This is rough, does talking it through help you in dealing with them?’
Similarly, most of the time during treatment and initial recovery, we look awful (don’t tell us, we know!). However, later after recovery, and we have our normal complexion back (if not all our hair), it’s ok. Another sign that we have emerged from the ‘kingdom of the ill’.
Be Aware and Sensitive: Both sides tend to be more sensitive. Patients, given all their existential questions and their brutal treatment. Others, seeing their own ‘but there for the grace of God go I’ mortality. We both need to be aware of this sensitivity, in the big and small aspects.
‘Being there’ largely addresses the big aspect. But tread carefully on questions about survival odds, test results, mortality, etc, unless invited. One of my most intense times was with a colleague in the final stages of cancer – we both knew we didn’t have much time, and went right into the existential. With other friends, there is more a gradual scale, although with my closest friends, we do touch these topics.
For the small:
- Short phone calls and visits are better than long. Know when to leave. If in doubt, make it shorter, or ask. Some of my close friends were very good at reading how I was feeling, and I became better at saying, ‘thanks, but I’m fading now’. Take the patient’s lead: it’s their dance, after all.
- People have mixed opinions about sayings like ‘I feel sorry for you’ or ‘My thoughts and prayers are with you’. I never resented these expressions as they are a way for people to express how much they care for you. Others did. Deborah Orr usefully suggests a better phrase, “I so wish you didn’t have to go through this ghastly time.”
- But for me, to use a cliché, ‘it’s the thought that counts’ is meaningful.
- Be flexible. Patients have good days and bad days. Always for visits, walks, events etc, add ‘if you’re up to it on the day’. But remember, its about the patient; they have more latitude to cancel than you do.
- Be careful with black humour. Some love it (I do!), others do not. If not sure, better to err on the cautious side (e.g., remarks about new ‘hairstyles’ – i.e., baldness – may work better with men then women).
- Don’t recommend alternate treatments or doctors, unless invited. And if you really feel that you have some unique information, scientifically backed-up, ask permission before giving advice.
Be Forgiving – Don’t Try to be Perfect: None of us get it right. We learn from our missteps.
For patients, we need to be forgiving, recognizing that our family, friends and colleagues are expressing their love and care for us, no matter how clumsily at times. Again, much better than being forgotten and left alone, so we need to appreciate it.
For our family, friends and colleagues who blurt out something inappropriate, just say ‘Oops’ and apologize, and move on. In most cases, this is enough to get back on track. And if unsure whether something said was perceived as inappropriate, just ask.
One of my closest friends, who would call and walk with me on a regular basis, made a comment that resonated with me, along the lines of ‘By understanding what you are going through, I will be more understanding should I or someone else close to me be in a similar situation’. This was not cold ‘utilitarianism’ at play, but rather his deep understanding of our common humanity, and dealing with cancer, serious and possibly terminal illness, was part of our common humanity. It was to help him become a better person while providing support to me. And we have become closer as a result.
Above all, be there, and the smaller things are just that: small, not important, as the overall message of love and care comes through and both sides emerge closer and stronger than before.