Many of us have images of communities of support. When we first think of support for cancer, we can find ourselves visualizing groups of women sitting in community or hospital-based support groups talking about their experiences with breast cancer. Or there may be images of family members coming to dinner every Sunday night, or friends coming by and calling.

These may not be images that bring up much that is positive for you. It is more helpful to try to build options for support that you need and can use, rather than try to change to fit into standardized models or ideas of “support”. People vary widely in the kind and amount of support that both feels good and is useful to them. If you listen to your inner voice or think clearly about what you need, you can probably get a clear picture of what would work for you.

• What kind of support would be most helpful to you
• What support is already in place or could be put in place without much effort
• Who could help put support systems in place
• What capacity do you have to let people help you
• What are your barriers to receiving support
• What would need to change so you could effectively utilize support?

The benefits of groups include sharing information, talking about strategies for coping, expressing feelings, learning how to communicate with your friends and family, how to handle work issues, how to communicate with your doctors and connecting with others who are facing similar challenges. Groups have guidelines for how people talk with each other and are structured to work well for everyone.

There is freedom in talking with people outside your regular circle, as there are often constraints on really saying what you think and feel to your partner, family members or friends. People say things like “I’m sure you’ll be fine” and you really don’t have a chance to say you are scared. Strangers who have been through what you are going through may feel closer-in than your dearest friends. They get it and it feels accurate, authentic and connected.

Sometimes walking quietly with a friend is just enough.

You know they are there for you and care about you.

The first loss is that life is never the same again. In the many ways that people live their lives, there is usually a past story, a present of immediate to indeterminate duration, and a future. People may be attempting to remain more in their present experience, and there may be a physical and spiritual truth that there is only the present moment, but people are generally organized around living toward a future, and have a story about where they come from and where they are heading.

Cancer immediately changes this story. The past leads up to this point, and then all future dreams, intermediate and distant come into question. The fact of impermanence, of changeability, of death, becomes stark, real and unavoidable. So there is a loss of perceived certainty of continuity, and there is a loss about unending time to accomplish life goals and realize your dreams.

There is the loss of the expectation of uninterrupted developmental milestones and transitions. It may be that life does not actually have these milestones, but we live as if this were true. The sense of identity based on a predictable future may be lost. So if you planned to marry and have children, or get a promotion, or reach a new level of athleticism, or retire and travel the world — all of this planning may come into question.

The loss of a sense of endless time is profound for many people; however this can also create hopeful and positive life results.

There are often immediate losses in relationships after a diagnosis of cancer. Relationship connections and communication can falter. If you are normally surrounded by close-in friends and acquaintances, you may notice the changing landscape of these friends. Some people in your world will not know how to respond, some will avoid, and some will have empathy that is slightly off. You may not want anyone to get close to you at this moment.

Friends and acquaintances will tell stories about friends they know who have survived and make insensitive comments accidentally about friends they know who have died. They may not know what else to say, and their awkwardness results in unskillful conversation. You may feel so vulnerable, and believe that it would require too much energy to try to communicate your needs directly, so friends get dropped partly intentionally, partly because to maintain them would require too much effort.

Everyone with cancer has at least some of these very painful relationship loss experiences, hopefully balanced by relationships and connections that are supportive and nurturing.

The first waiting comes when you first have a glimmer that something could be wrong. This may come from feeling badly or noticing something out of the ordinary with your body. Or from having a routine office visit and lab test that comes back with an out-of-range result. Any unusual results can lead to another set of exams or lab tests. Each of those tests needs to be scheduled, completed, and the results need to get to your doctor for evaluation and then communicated to you. The period of time between test and result often seems to last forever and be filled with fear, dread and big anxiety. So you wait.

You notice you are scared when you become forgetful, have trouble sleeping, feel jittery, can’t concentrate or feel sad. These are usually the result of fear and anxiety.

More waiting comes when you need additional more tests. Some people need a biopsy to diagnose the cancer – others have additional surgery or scanning tests to diagnose or stage it. More waiting for results. If you need treatment, more waiting for treatment planning and figuring out how it will be started. More room for fear. And lots of time to feel it in. No way to rush the system – so you wait.

So what can you do in all this waiting?

You have some choices about this process. One of them is to try to pretend that nothing is going on out of the ordinary. I am not talking about the type of pretending for the benefit of other people. Some people have a natural capacity and tendency to compartmentalize, keeping different parts of their lives completely separate and out of awareness. If you normally do this effectively, it can potentially continue to work for you at this time. We could make a case for some dilemmas about this strategy, but if you can make it work, then it might be effective in the short-term. However, if this is your style, you probably haven’t actually read this far.

Talking to people who want to listen is most always helpful. Sharing the waiting and your feelings with another person can lessen the load for you. Some of us have a hard time with that kind of leaning on others. We don’t want to burden friends or family and we can’t figure out at the beginning who else might be there for us. Remember that they aren’t going through the same thing at the same time, so they probably have more capacity to support you than you realize. It is really a gift to a friend to be able to be there to support you at this time. Both women and men may have a hard time reaching out. Reaching out in times of trouble is a great skill to cultivate. More on that later.

Relaxation or meditation practices and other activities that calm body and mind are great, but not always easy to start up out of the blue. In the future we will share strategies for finding activities and practices that support a calm and balanced mind and body.

What not to do – too much internet research! Although information can be stabilizing, when you don’t know have accurate personal information, it is impossible to tell what applies to your situation and what does not.

What definitely not to do – drink more alcohol than usual, self-medicate, become self-destructive or imagine the worst.

For today, take a moment to walk for 5 minutes in nature or around the block, notice the sky.

But before that, there is the in-between time, when you don’t quite know what is happening. You may have experienced troubling symptoms for some time, followed by lab work or medical exams. Or, it may have all started with a routine trip to the doctor – you were told that something seems suspicious or wrong. “How long has this lump been there?” After that, you may have gone through more visits and more tests, several weeks apart.

So at the time of receiving the definitive news of cancer, you have already been feeling fear, dread, confusion – many unpleasant feelings. While waiting for test results, you might have been counting on relief or expecting the worst. While waiting, we usually cope in the way that is most familiar, using our habits and patterns of thinking and feeling. If you are upbeat, you probably stayed that way. If you are more like Eeyore in Winnie the Pooh, you probably have been feeling dark and dismal.

If you went through all of the tests, and the “all clear” was sounded, then the emotion of this experience will recede and ongoing life is not interrupted too much. However, even this near-diagnosis experience frequently has a powerful emotional result – “The time I almost had cancer, I really imagined what that was like.” And life changes a little, sometimes actually for the better. Life seems more precious, with a hopeful and fresh future.

But if you received bad news, you will be experiencing shock, trauma, loss, grief, fear or confusion. Although there’s a lot to do down the line to feel better, to be hopeful, optimistic, informed … at the beginning, it’s just a nightmare. You are most likely numb, confused, worried or hyper-focused on only one aspect of the information. You could even be wondering what all the uproar is about, and sure that everything will be fine.

Some people experience the sense of the wind knocked out of them, dizziness or enormous sadness. There’s a loss that life will never be the same again. Life After Cancer. No planning for life lasting forever, which it doesn’t anyway, but we pretend. At the beginning of this journey, no one has any accurate idea if life will be shortened from cancer, but it is almost always a first fear. Cancer changes everything.

There are so many unknowns. At a time when you desperately want information about illness and treatment, and outcomes, there are frequently delays in getting that useful information. It takes time to get in to the doctor for medical appointments and time to get in for specialized tests. Waiting for more results is very challenging. You will be waiting with very little information for days or weeks at a time when you need some concrete information and direction. Even if you are very skilled at getting appointments, even if you have a friend who can help, it’s hard to navigate the system and wait it out.

I am using it for organizing everything. The Workflowy developer suggests that a good starting point is 5 main lists – Goals, Chore, Project, Thoughts, Links. Each of the lists can have level upon level of nested list. You can have a broad overview of a project, down to the tiniest level of detail. This works for writing a book, planning a wedding, structuring a project, organizing an overseas trip and cleaning up unfinished business.

When I was younger my lists were on paper and always unfinished -

Wednesday

• Do my laundry
• Go to France

Equal chance of occurring on a Wednesday in August. Neither happened.

Workflowy is helping me to get things done and see the overall picture.

I have also used Backpack, Remember the Milk, and Toodledo. For me, simple is better.

Each bulleted item in your Workflowy lists can have notes. You can copy all of the keyboard shortcuts for Workflowy into your list for reference until you know them. There is a short training video. You can move things around. You can print lists and parts of lists.

It works and it’s fun. And free.

I am no longer searching for a better time management and organizing platform.

www.workflowy.com