What do you know now that you wish you had known then--that is, upon hearing that dread diagnosis of cancer?
I did check my list of diaries, and the MNCC list of diaries too, but somehow we appear to have missed what seems to be a really important topic--especially for the benefit of newbies, who unfortunately are diagnosed in great numbers every day. If I overlooked someone's contribution, please do feel free to bring it forward in the diary comments. Today seems to be my day for making pretty big mistakes of fact, so I might be wrong in this case too.
So let me start with some insights I wish I hadn't had to gain from experience. They are not in priority order.
First, please DO reach out to lots of people who have direct experience with your particular kind of cancer, in real life or online. That's one blessing of the Internet--though I am sure it's still true that some cancers are so rare that it would be hard to find people with it. The first-hand, hard-won knowledge that comes from experience is very important. smileycreek wrote a beautiful testimonial about how much participating in Imerman Angels helped her and her husband, paradise50. It might be something you find helpful, too, at any stage of your treatment and/or recovery.
Second, paradoxically enough, DO take this information with the proverbial grain of salt. It is important not to rely exclusively on this information, or assume that one person's trajectory will be the same as yours, even if the grade, stage, and type of cancer are the "exactly" the same. (I put that in scare quotes because although I have a fairly common type of cancer, I still haven't met anyone in real life or online who has the same circumstances as I do.) For good and ill, this condition affects each of us differently. Even oncologists have no way to know, only to extrapolate, about the disease course in any particular individual. Some of us who "should" do well don't, and vice-versa. It is more important than ever to use good discretion and judgment before determining what you think is useful to you. One special caveat: It's a good idea not to look at online resources late at night; that can be rather disruptive to sleep. Moderation and perspective are important tactics to keep at hand.
Third, as best as you can, DO try not to let the fact of cancer take over your life. I know that is much easier to say than to do, especially early on. Even now, more than a year into remission, having cancer is always, always on my mind. But at least I am less afraid than I was at the beginning, and cancer isn't always the first determining factor. I am not so insensitive as to say that one should not be afraid; this is a scary, often terrifying condition, and fear is a totally understandable response. Also, I do have the good fortune to be in remission now, and so I do have a little more leeway not to have to calculate every action according to its possible impact on my illness. But I know that's not the case for everyone, and certainly not for anyone all the time.
Fourth, please DO be kind and considerate to your body. If you're undergoing conventional treatments, like chemo and radiation, they will take a toll, with effects perhaps as painful and disagreeable as the cancer itself (or more). So if you have any way that you can pamper yourself, this is a good time to do it.
Fifth, in another seeming paradox, DO try to keep moving and to stay as physically active as you can. Although some days you might feel as though you are too tired to get out of bed, see if you can do it anyway. A change of scenery can do wonders. Getting outside, soaking in the sunlight as much as possible, keeping those muscles moving--all of those can help you feel better than staying put in bed.
Sixth, just to complicate things a little further, DO learn to value the importance of rest. Before cancer, I didn't. I thought if I were sitting down, I had to be productive one way or another, either reading or writing or folding laundry. But rest itself, different from sleeping, is a good in and of itself. Take some time to look around, breathe deeply, appreciate your surroundings, give thanks for what your body still does well.
Seventh, DO see if you can develop or improve a meditation-related practice. I didn't do any such thing before, and I have found it to be invaluable--if not a life-saver exactly, then certainly a sanity-saver. With a cancer diagnosis, I want to know so desperately that I will be OK in the end (whatever that means), and of course there is no way to know that. As I often joke, I could STILL get hit by a bus: that is to say, none of us can foretell the future in the smallest iota. So it has been a source of great stability for me to tap into some of the ancient wisdom traditions that remind me that all we have is this moment, and that in this moment, all is well. For some, it will be prayer; others, meditation; still others, yoga, or another sort of structured movement. Or all of the above! There's no limit to what you can try, to see what works best for you, singly or in combination.
Eighth, DO ask for help if at all possible. For many of us, that's not so easy. Not everyone has family or friends they can count on, and even if we think we do, sometimes we're disappointed. But it's worth it to make the effort, and often the people who help most at any given moment are not the ones we might have expected. Oh, and one more thing: it helps if you are VERY specific and directive, especially in response to those people who say, "Let me know how I can help." They're sincere, usually, and it does depend on you to let them know what they can do.
Ninth, DO keep laughing, and look for humor, silliness, and uplift wherever you can. At my real-life cancer support group, that's often the very best help we can offer each other, namely finding the humor in what might otherwise be a very painful circumstance. We have at least two members who at the moment are gravely ill, and so there are plenty of moments of distress to be shared. But they are just as delighted, if not more, as the rest of us to find the humor in the bleakest of situations. It helps us all keep going, and it makes us happier as we do so. There's even some good evidence that laughter itself, without any associated humor, has similarly positive effects on the body. So see if you can emit some Ha Ha Has by yourself sometime and see if that's not silly enough to get you to laugh. Whatever works!
Tenth, DO permit yourself to feel your feelings. They're likely to be all over the place in the early days and weeks. Why wouldn't they be? You have a lot to handle, a lot to learn, and a lot to accept whether you want to engage in the process or not. You're in the middle, and as the saying goes, there's no way out but through. Or, if you prefer, that quote of Churchill's applies as well: When you're going through hell, keep going. I'm not suggesting that you overlook or minimize indications of depression or anxiety; if your emotional state makes it difficult to function, then please get help. But I am suggesting that it's normal to feel a lot, and deeply, after getting this news. If you expect intense responses, then you might be less panicked by them, and find it easier to regain your psychological equilibrium.
Listing ten seems like a good place to stop, don't you agree? I don't think I've exhausted the possibilities either, so as always I look forward to reading what you have to say in the comment threads.
For the benefit of the newcomers who might be checking us out for the first time, let me add that these diaries are always also open threads, regardless of the diary "topic." We are always happy to offer support and to answer questions as best as we can. (I ought to add that to the series description, which follows.)
So: what do you wish you'd known then, that you know now? I'm interested in finding out. The floor is yours.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.