First a correction. After speaking with my onc (oncologist), I realized that my prior posts on staging was erroneous. I was a clinical Stage III. My pathology was T3 N1 M0. The difference is that you cannot get the pathology until they get the nodes during surgery to determine whether there are cancerous cells in there. Since I had chemorad (chemo + radiation), my pathology may have changed from diagnosis to when pathology was determined. Still learning after all these years.
I took the referrals from Dr. Awkward Inappropriate and RAN, never stopping to look back. It took a while to process, but the strange thing is that once we were told definitively what we were dealing with, it felt easier to get a mental handle on it. Believe me, there was still plenty to worry about, but at least we had steps with which to move forward.
We spent the weekend doing an extremely exhausting but a very necessary task – telling family and friends. Phone call after phone call was made, not knowing whether we would get the person live or if we would have to leave a voicemail for them to call back. Giving the news again and again.
I can’t say that I remember every phone call, but I will never forget the dread that I was filled with as we made those calls. For the most part, the reactions were the same – shock, dismay, and uncertainty. Uncertainty on how to get past their feelings to find something to say. Uncertainty with how to get past the doubt on whether I would survive this. After all, I had just told them that I was staged at III and there are only IV stages.
The first reaction folks have is to try and be encouraging. The most frequent thoughts are to “be strong” and to “keep a positive attitude.” Personally those thoughts don’t bother me because it follows with my approach to life in general, but now that I’m on the other side of the fence I have found through many of my new CC (Colorectal Cancer) friends that sometimes it makes things more challenging because that person then feels like they have to put on a happy face for you. That takes both physical and emotional energy that they may not have.
Instead I would suggest thoughts like “I’m sorry you are going through this, but let me know if there is anything that I can do to help” or “Call me anytime.”
Edit: “Let me know if there is anything that I can do to help” turns out to be too generic. Here are some helpful links: NY TIMES: ‘You Look Great’ and Other Lies, Huff Post: Suleika Jaouad: 10 Ways to Help a Friend With Cancer, Guardian; 10 things not to say to someone when they’re ill.
Then the best thing that you can do is keep checking in every so often to see how the person is doing. You’d be surprised how much more it takes out of you to make calls out than to receive them. One of the soccer moms actually coordinated some dinners for us so that we wouldn’t have to worry about cooking for about a week. It was very kind, but funny too because we had to guess at who left dinner that evening. They played ding-dong-ditch with food! Other ideas might be to walk their dog if you live close by or to set up a maid service to help get them through the low energy weeks from chemo. Get creative! On the flip side, some people will need space. It’s important to give that to them, but also to realize that depression can be a part of it. It really is a balancing act. You know your friends, so just be attentive.
After making what felt like an endless amount of calls, we finally got to the point where we were so emotionally drained that we couldn’t make any more. It’s a mixed blessing, but I sure didn’t realize at the time just how many friends we have! Many of our friends are associates at work and I will never forget one call in particular. We were not able to reach this gentleman to share the news, so we left a message. Since he is a senior member of the company, we asked him to return our call as soon as he could as we had some important news to share, but promised that the news was not that we were quitting. His callback was heartbreaking. His first words were “Congratulations, is it a boy or a girl?” I could hear the devastation in his voice as we spun the tale yet again. There are moments in your life when you remember exactly where you were and what you were doing. This was one of those moments.
For those of you who are reading this as a newly/recently diagnosed patient, my suggestion would be to not make all those calls. Call a few key family members/friends and have them call everyone else. You have so much information to digest at this point and this will save you a load of “brain damage.”