This past weekend, I received an email from a stranger who was desperate for some encouragement from me, having been just diagnosed with the cancer I have had. There's so much that we have to learn, right away, upon diagnosis, and seemingly few aids to help us learn it all. And one real barrier to learning anything at all is the very real fear that this condition will kill us.
Hence this diary is another installment of how to cope with the extremely bad news of a serious cancer diagnosis--one in which treatment is ongoing, and one for which you have about a 50-50 chance of making it to five years. Those were my circumstances upon diagnosis, and so I feel able to make some statements drawing upon my own experience. However, I'm still only one person and cancer is decidedly not a one-size-fits-all situation. If your experiences and thus your suggestions differ, please do share as much as you like.
We've had several other iterations of this in the Monday Night Cancer Club; here are links to a few of them:
What Do You Know Now That You Wish You Had Known Then?
A Provisional Guide to Cancer Support Groups
Getting Financial Help with Cancer Treatment: Part I, Negotiation
Monday Night Cancer Club: "I promise you. I will not let you go."
Plus three more from ZenTrainer in the comments. Thanks, ZT!
Monday Night Cancer Club: Tips Your Doctor Might Not Know
Cancer Treatment Support - MNCC
Cancer and Humour - Monday Night Cancer Club
In this diary, I am going to reframe some of the pieces of advice and counsel from the first one on that list, drawing from the comments as well as from the original post. Please join me after the orange clasped hands for more.
(An aside: what will we do in DK 5 without the divider-doodle to rename? I hope we don't have to find out in the end!)
(A second aside: If you have the time to read any of those linked diaries, please do scroll down to read the comments, too, which are wonderful. And often poignant, too--because some of our beloved Kossacks commenting within have indeed died. I miss them very much.)
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 7:30-8:30 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.
I'd like to begin by recommending self-care strategies. All throughout this process, it's essential to be kind, gentle, and supportive to your body, because the treatments you're likely to endure are anything but easy. Good idea, then, to start right away.
Sleep as much as you can. Rest as much as you possibly can. (They're not the same thing.) Eat well, but low on the food chain if you can. Drink lots of water. This is especially important if you have chemo, because the water helps your kidneys excrete the poison. Keep moving if at all possible, because our bodies are designed to move. Walk, however slowly, every day. Breathe deeply. Get outside, unless the weather is completely contrary to health and safety. The beauties of the natural world await.
I endorse feeling your feelings, by which I mean acknowledging that you will likely be on a roller-coaster of emotions (some of which may be exacerbated by your treatments). Feel sad, angry, scared. They're understandable reactions under the circumstances. But--see also if you can obtain some perspective on your feelings. They're transient, if they're allowed to be, and positive, uplifting feelings are also to be expected as part of the process. Gratitude for those who are helping you, for example. Relief that your body seems resilient. Pleasure from an everyday experience or observation that brings you delight. Satisfaction from doing tasks that you ordinarily enjoy. Shutting down the disagreeable feelings can also cut you off from the better ones.
Some earlier counsel:
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.
I have found a
meditation practice really helpful in creating an equilibrium. There is an abundance of resources available on line and in person, or through books and recordings. The cancer center I used had a person on staff to create individualized meditation scripts, which she would then record for that person to listen to at their discretion. The Cancer Support Community I attend has long sponsored guided meditation sessions on a weekly basis.
If ever you've had a time to face serious emotional and physical challenges, you know already you need to cultivate skills to cope. Dealing with cancer and its treatment is definitely a time that stretches all of us. Give a little, or a lot, of thought to what help you need, and then go look for help in every way necessary to you. Do you need day-to-day help with household tasks? Ask friends and family if they can pitch in. (Setting up a Lotsa Helping Hands site is one way to go about that process, a way to specify what you need and to organize coverage.) Do you need financial help coping with the enormous medical bills? Seek out a hospital social worker and press them into your service.
Keep asking for what you need. Look for help in that search, too. It can be tiring and draining, and it will likely take a lot longer than you'd like it to. It might not always produce the answers you were hoping for either--but you won't know until you try.
Many people affected with cancer have another major issue to address: retaining employment while in treatment and afterwards. Think carefully about the degree of disclosure you want in your workplace. Here's leftangler's comment from a couple of years ago:
DO understand that your employer only sort of cares, and is more worried about if you can do you job or not. Don't be surprised when people expect you to bounce right back and get into the groove again.
My experience is cautionary. I lost my job as a pretty direct consequence of being sick. I have no way of knowing how representative that is, but I'm sure it's not rare. Don't assume that your employer will be compassionate or supportive. Make sure you are aware of any legal protections you may have for requesting accommodations.
The Internet is the very definition of a double-edged sword when you enter Cancerworld. It can help put you in touch with wonderful resources you had no idea existed. It can give you some idea of what you're dealing with, related to your particular cancer. But, while some knowledge can be power, too much knowledge can be overwhelming. I find that to be especially true of researching cancer treatments. Important information exists, to be sure, but a great deal of it is contradictory and/or incomplete. Look around until you feel you've reached a point at which you can make your decisions, and be settled with them. I cannot count the number of times I yearned for a clone of myself to be the control subject (or better yet, a number of clones, to try multiple treatments simultaneously). Sheer fantasy, of course. In the end, you have to proceed with what you think is best for you. I'll repeat here one piece of advice I offered a couple of years ago:
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.
No two people respond the same way to treatment, even if their cancers are "exactly" the same. That's one of the most baffling and frustrating aspects of cancer treatment. The oncologists you work with will have formulated their approaches based on their clinical experiences as much as on the research literature--and yet they'll admit when pressed that they can only estimate what the prognosis will be.
It's not a bad idea to get a second opinion, for that matter. Perhaps you'll find the second doc to have better options for you than the first. It happens. It's not at all unusual to ask for second opinions, and any doctor worth seeing will understand it to be a legitimate part of your process.
This is the point when it's essential for you to consider what's in agreement with your own beliefs and values regarding medical treatment. Some people think that allopathic remedies and treatments are the only ones worth pursuing. Others think that allopathic approaches are useless, mere money-makers deriving profit from a captive and desperate audience. I tend to be somewhere in between: if the allopathic medical interventions are effective for me, then I am happy with them. If not, as was the case for me, then I will seek out alternatives, and choose among them. I've wound up using an array of approaches, in the end, and give credit to all of them.
Here's an eminently practical suggestion: Keep a cancer notebook. When I started this process, 4.5 years ago, paper test results were still standard. So I made dividers for a large 3-ring binder to accommodate several categories of information, such as Q & A with my doc, test results, research articles, and nutrition resources. Nowadays, though much of this information is obtainable through the patient portal, I'd still recommend making paper copies of your questions for the doc, including any test result reports you don't understand.
Some people also strongly endorse keeping a cancer journal. Since I've never successfully kept a journal in my life pre-cancer, I couldn't take it on with cancer. But for some, it's a wonderful tool and resource. I tend to think of my posts here and my update emails as a form of journal-keeping. Others will want to draw, or paint, or make pots or jewelry, or sing, or write music, or garden, or register voters, or.... Whatever you love to do, keep doing it. This is when you need to tap into your joie de vivre. What makes life worth living for you? Don't lose track of what matters to you most.
By the way, if at all possible, I recommend that you take someone with you to your oncology consults. That companion can take notes for you, so that you can concentrate on your dialogue with your doc. It's also helpful to have one more set of ears to listen to what was said. Regardless of anyone's best efforts, it's still possible to have questions remain unanswered, or answers unclear, post-consult. A good doc should be accessible to you via phone or email to respond to requests for more or clearer information between appointments.
While I've said above that it's important to acknowledge your own range of emotions, whatever they are, I'll also endorse seeking out occasions for laughter, camaraderie, and joy. Laughter has positive physiological effects that may or may not impact the cancer itself. Along the way, though, your quality of life will be better. Mind you, some of the very best jokes can be found in laughing about cancer. That's one of the ways my in-person cancer support group has bonded, laughing sardonically over the situations we've encountered in Cancerworld. Have an interaction with a hopelessly pompous doctor? Memorialize him with a nickname and laugh about it. Feel frustrated about ongoing complications getting in your way? Laugh ruefully and go on. Even in the face of terminal decline, we can keep laughing, admitting the poignancy of the human condition. It helps.
These recommendations surely do not exhaust the possibilities. Please feel free to add your own in the comments.
Before I close, let me add a link to one vital resource that both ZenTrainer and I use and endorse highly:
Cancer Support Community Local, independent, non-profit agencies for people with cancer and those who love them. Services are free to those who need them. A great range of classes, workshops, groups, and resources is available at these; check the website to find one near you. (Note: On the national level, CSC includes Gilda's Clubs and The Wellness Community as well, many of which have maintained their original name.)
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.