Andrew Griffith has mantle cell lymphoma and had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com, is working on a book on his journey, and can be followed on Twitter @lymphomajourney.
There has been a great deal written on what to say and what not to say to someone with cancer. Some of my favorite pieces are by:
Reflecting on these pieces and my own experience, much of this is common to any difficult circumstance, not just cancer.
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.
I have come up with the following joint suggestions.
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. It made me realize which friendships were meaningful and which were 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, if someone makes a general offer, make a concrete suggestion 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's 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 aren't comfortable sharing. Others may be, or may grow more comfortable. 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's 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). 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's 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. 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 when we have our normal complexion back (if not all our hair), it's OK. It's another sign that we have emerged from the "kingdom of the ill."
Read part II of Supporting someone with cancer
10 things not to say to someone when they're ill by Deborah Orr
10 Ways to Help a Friend With Cancer by Suleika Jaouad
What to Say to Someone Who's Sick This Life by Bruce Feiler