Coping with a new cancer diagnosis: Part I
Where Do We Start?
When someone calls me to talk about a new diagnosis, the diagnosis is everyone’s first and biggest concern and by then, most people have already Googled something along the lines of their diagnosis + “how long to live” which never helps anyone’s anxiety level. I’m guessing that you’ve already had multiple versions of this happen, so what I’m going to ask you to do right now is pause…and take a few steps back. There are plenty of concrete, logistical parts of coping with cancer and that is where most of us focus when facing a new diagnosis. I understand this on a personal level – I’m what I would describe as a hyper-rational, list making, math and science person. My first, second and really, tenth instinct is to find the research and look at the data and then start organizing…well, anything as a self-soothing exercise. So, believe me when I say I understand your need for concrete ideas of what to do next and I do share a few in Part II of this series, “Let’s Get Down to Business.”
1. Find your True North.
2. Write it down and carry it with you.
You might be thinking, “What I need is some concrete help and this is first advice you’ve got? Really?”
Yes, really. Here’s why – things are very likely about to get rough, possibly very rough (if they haven’t already). Life on a good day is riddled with frustrations and challenges but this is a whole new level. And what I’ve learned, is that most people need to know for themselves the “Why” they’re doing this and the “How far will I go?” When you’re in the trenches of treatment, being able to remember why the Hell you’re doing this matters more than you can imagine.
When my brother “S” was diagnosed with stomach cancer in his early 40s, his daughters were 3 and 6 years old.They were his Why and meant that his How Far was — well, as far as he had to go until he ran out of road. At which point, my brother would have probably just decided to try and fly, because nothing meant more to him than to be around to continue be a great dad to his kids. 18+ years later, if you asked him whether he would go through treatment again – with his kids grown – he would probably say it depends on the situation. His Why hasn’t changed. He still adores his family and wants to be there for every bit of their lives – but the realities of treatment aren’t something he would just brush off.
On the other hand, some folks have no hesitation about wanting to hit the cancer as hard as possible, no matter what.
My mom was a prime example of someone who wanted to fight to the very end. Given the opportunity, she would have gone down swinging and giving Cancer the finger to the very end. Unfortunately, by the time her cancer was found, the only thing treatment would have done was overwhelming a body that was barely holding on.
Truthfully, most of us are somewhere in the middle so here are some ideas on how to think about this for yourself. Just remember – whatever you decide right now is not set in stone. You can and will want to reassess this from time to time, hopefully with the people closest to you.
Think about what makes life worth living for you. This includes the people, animals, activities etc. These are both your Why and context for How Far. For my oldest brother “D,” the Why was damn near everything because he was one of those rare people who was able to live life fully and in the moment. But his quality of life depended heavily on how many of the activities he loved he would still be able to do. For D, hiking, fishing, traveling and continuing the conservation work he was so passionate about were much more than hobbies. So, when he weighed that against his diagnosis and how things were looking, he had a pretty clear answer to How Far. Knowing his True North gave him the clarity he needed when it was time to make decisions about his care and it helped the people in his life understand why he made those choices.
What comes up for you when you think about what makes your life worthwhile?
For most of us, this comes down the people in our lives but no judgments here if you find something else comes first. If you have a list of projects for your life’s passion, put those on the list. Live in Tuscany for a year? Add that too (and, seriously, please take me with you). Full disclosure, on the days that I’m being very honest, my dogs are pretty close to the top of mine, but let’s just keep that between us, OK? The point is – it doesn’t matter what anyone else thinks. Or what you think you ‘should’ have on your list. What matters is recognizing what will actually keep you going during the hard times, and knowing what touch points you’ll want to think about when you are weighing options for care.
It is natural to focus on the people we love and all the things we still want to do, but don’t forget about what you’ve already accomplished in your life. It is incredibly empowering to remember all of the trials and challenges you’ve already make it through. Take an honest look back at the goals you’ve reached and the people whose lives you’ve impacted to help ground you while you’re looking at what matters to you today and beyond.
Try doing this exercise over a few days, adding things to your list as they come to you. You might be surprised at what comes up for you later on in the process. Once you’ve had some time to think through what’s on your list, refine it to what really helps you feel pointed towards your personal North North.
Putting It Together
Once you’ve done this work you’ll have 2 things. First, you’ll have a simple but effective reminder of why you are doing this whenever you need it. With that in mind, post this where it will be most visible as you go through your day. Tape it to your bathroom mirror, save it to your phone’s lock screen, or hang it on your refrigerator – any place that makes sense to you. In addition to keeping it front and center at home, make sure you keep a copy someplace easily accessible, like on your phone, so that you can look at while you’re out and about. This is especially helpful during frustrating doctor’s appointments or long infusion sessions when you need to remember why I you aren’t actually going to disconnect your IV and make a run for it. The thing is: this works better if you look at this list regularly, before you might feel like you need to. Then when you really need the reminder, pulling it out will already be second nature.
Second, as you move forward, your Oncologist will periodically ask you to make choices about your care that will feel like “Big Decisions.” Now, have a reference point to help you weigh the benefits versus the consequences of treatment options you are given. As you work through those decisions, think about how they fit into the context of your True North. If your list boils down to “I have so many things I want/need to do, I want as much time as possible,” then your decision will be probably feel pretty straightforward. But if your list is less about what you still have to do in life and more about the experiences and activities that bring you joy, then your position is less cut and dry. That is when you can take your True North list and think about how a treatment option will impact the things that make your life full and worthwhile.
- Is the treatment option so difficult that you won’t be able to do the things that matter to you for weeks or months?
- Is the chance for more time worth it?
- Does that change if it means more time without those activities?
- Would another option give you a better balance of managing your symptoms so you can live as full a life as possible for what time you have left?
Every question in the paragraph above is incredibly heavy and difficult, and my deepest hope is that you never have to get through them. But, if you do find yourself in that position, then I hope the time and work you put into this process will give you something to reach for when you aren’t sure where to start.
Wrap Up
When someone gets a new cancer diagnosis, most (or all) the focus is tied into the logistics and tasks of starting treatment, and for good reason. There is no doubt that it is the main priority. But in my experience, it can’t be the only priority. Taking the time to get mentally and emotionally grounded is helpful in a surprisingly practical way. Doing this work gives you a chance to get some perspective on what you’re facing. It will also give you a tangible tool when you need some help staying focused on the big picture or a way to think through big choices.
This might seem like something that can wait, especially if feelings aren’t exactly your comfort zone. (Ahem!) Anyway, what I’ve learned, is that thinking about what matters to you “the person” and not just you “the cancer patient” will make all the difference when you need to cope with the big stuff headed your way. And on the days that life feels like it’s spinning out of control, knowing which what your True North is pointing can help you find your way when you need it most.
