Explaining everything to family and friends is a nightmare in and of itself. My husband was incredibly kind in being willing to do so with most of our friends, but my calls to family and a few close friends were tough. I decided not to tell my 2 remaining elderly aunts, because they had enough of their own health issues and did not need another reason to be sad. Fielding questions as dispassionately as possible and dealing with people’s emotions is exhausting even as your own are still raw. Even for friends who my husband had called for me, some ended up calling me and sobbing uncontrollably on the phone. I ended up comforting them for their upset at how I must be feeling, which was even more painful. Questions asked are often not answerable and add to the upset of the situation.
For all of these reasons, my husband took it upon himself to shield me from any more questions, others’ emotions, or need for more information. Frankly, for the first month or so, I really didn’t even want to talk to or see anyone. I was a walking zombie, my mind alternating between clouded thinking and painfully sharp clarity. I didn’t want to share what I was thinking with anyone, sometimes not even my husband, the darkness enshrouding me. But, shortly after my first round of chemo, there began to be some hope…
My “good numbers” began climbing (no need for a blood transfusion, it had been close before), and my “bad numbers” were starting to go down. My energy was returning, I had an appetite, and my dizzy spells were fewer. Slowly, some quality of life was returning, but it was too much to explain to people so my husband started sending out updates to people via email, along with the tabled results of my bloodwork each month. That took immense pressure off of me and I am so thankful for his help.
There is no easy way to tell people (as any physician will attest to when they’ve had to do so). No matter how you try to explain it to others, they will be shocked and upset. Probably telling them the basic facts is best, but they will no-doubt be processing it emotionally at first. Everyone hears and processes it differently. For some, it may trigger past experiences with others they have cared about (a few told me they had lost family members to cancer, then quickly apologized). Others may be focused on their grief at the potential of losing you. Still others may want the facts and try to address it rationally. Then, there are others who turn to your feelings, how you are dealing with it. For me personally, probably the best response was the focus on facts, wanting to know what I was facing. It allowed me to keep my emotions at bay, which I needed because I tend to be a private person when it comes to my emotions.
In the aftermath, some have told me about miraculous stories of people they knew who have been somehow cured of their cancers. Quite frankly, this didn’t help at all, as I would gently explain that every diagnosis and cancer is different, as is every person’s set of symptoms/stage of the disease. Some have kept in touch only sporadically or not at all. Everyone deals with grief/death differently, whether they are the recipients of the news or the bearers of it. Similarly, each person has different needs when it comes to the support of others.
I see this as no different from when I worked with married couples who were struggling with communication of their needs. While the one would show love and caring via physical hugs, gifts, helping out at home, or with words of love, sometimes it didn’t fit with what their partner needed but that had never been communicated. Saying you love someone when all they really want is a hug doesn’t help, but you don’t know that unless they tell you. The same goes for people’s emotional needs in any relationship. People telling me of miraculous recoveries only frustrated me and minimized what I was experiencing, but that was not their intention. That’s why it is so important to let people know what you want, what you need. At the same time, for those in a supportive role, they need to ask what you need, what would help. Just “playing it by ear” without knowing is often not helpful and can in fact be hurtful.