Navigating the Wilderness of the Cancer Experience
Has a cancer diagnosis - your own or someone you care about - left you feeling lost in the wilderness?
Suddenly, nothing looks familiar. There's no path to follow. You're lost. You can feel the fear, anxiety, and panic rising into your chest. The cancer journey can be a scary time.
But, you're not the first person to be lost in this particular wilderness. There have been many here before you and they found their way through. And when they share their stories, it's usually some version of the "Journey of the 6 Mountains". We can learn from them.
Introduction to the Cancer Journey
One of the reasons a cancer diagnosis can feel like being lost in the wilderness is that you've suddenly lost control in so many areas of your life:
Loss of control over your physical body: You no longer trust your body to keep you healthy and functioning.
Loss of control over your mental and emotional life: A diagnosis can stir up a lot of fear, worry, and anger - feelings that you sometimes have a hard time managing.
Loss of control of your daily schedule: Testing and treatment are now a priority and your normal routine can get interrupted.
Loss of control over your independence: Suddenly, you're relying on a team of people to make smart decisions about your life and wellbeing.
This can be overwhelming. It can be helpful to recognize that what you're experiencing is normal. And while so much at this time feels like it's out of your control, there is a way to navigate through this cancer wilderness. You can decide to set off on your own "Journey of the 6 Mountains."
The cancer experience is known to include six phases - which can be thought of as a journey over six mountains. These mountains represent the "self-care continuum" and the path that most patients travel. Using the mountain metaphor, let's call them Mount Danger, Management Summit, Grief Mountain, Preservation Peak, Re-Examination Ridge, and New Normal Mesa.
Meet the Mountains
Mount Danger. This is where most people start the journey. You find yourself here at the time of diagnosis and while the early decisions are being made about the testing and treatment process. Hearing that you or someone you care about has cancer is life-changing. The alarms are going off and the anxiety is high. Danger! Everything changes and there is a real threat in the air. This phase is a scramble to do whatever you need to do to get yourself out of immediate danger. It's a flat-out, adrenalin-filled race to get yourself to a safe spot where you can catch your breath. It's likely to be messy, emotional, exhausting, and overwhelming. That's OK. A climb up Mount Danger does not have to look pretty or be skillful. All that matters is getting yourself to some level of basic safety. Tips for climbing Mount Danger:
It's all about getting yourself to a safe place where you can breathe. This means that you have identified your healthcare team, completed your initial tests, and have the first phase of your treatment plan in place.
You don't have to pretend to know how to do this ... unless pretending helps in some way. In that case, fake it until you make it. In most cases, this is new territory for you - you're not going to know your way around. Everyone gets that.
Make space in your heart and head for this to be a messy and uncomfortable journey. Whatever self-management skills you have are likely to be forgotten in the panic. You may fall and stub your toes multiple times. You may be embarrassed at your lack of competence and composure. This will pass.
Gather your support. This will include healthcare professionals, family, friends ... anyone you experience as a source of support.
At some point, you will feel like you can breathe. You have your oncology team in place and there's a plan. Although you may find yourself back on Mount Danger again in the future, it is now time to begin climbing Management Summit.
Management Summit. This climb is about assessing what you need during this time, identifying what is within your control, and putting your self-management skills to work. This is the phase where you ask yourself "How can I help myself out here?". This is where you become a participant in getting your needs met. Research has shown that people with good self-management skills tend to respond better to treatment and recover more quickly. Tips for climbing Management Summit:
Take a look at your self-management skills and consider how you can put them to work. Examples of self-management skills are organizing, goal-setting, time management, self-motivation, stress management, and accountability.
Assess your strengths. What are you naturally good at that will serve you well right now? What are you not so good at and who can you call on in your support team to provide those strengths for you?
Prioritize your needs, wants, and responsibilities. It may be helpful to create a list for each area of your life (work, home, family, treatment, self-care, etc.) Identify the top 2 or 3 priorities on each list. For instance, you may have many items on your self-care list, but you identify sleep and movement as the most important for you right now. Set some small-step goals for meeting your priorities.
Create a schedule for yourself. Research has shown that keeping a regular schedule has a positive impact on your health and quality of life. Make it realistic, but make it.
Begin exploring ways to manage your stress. This is important. Exercise, mindfulness practices, rest, psychotherapy, and coaches can be helpful in managing stress.
Be patient. This is going to be a long climb. And you have other climbs ahead of you. Be patient with yourself, with your progress, and with your body.
Grief Mountain. This is a hard one and you might spend a good deal of time here. This is where you assess your losses and grieve for them. It's also where you practice gratitude and find ways to celebrate life. There will be a lot of losses during this journey. There is the loss of control, the loss of health, the loss of your "normal life", the loss of a sense of safety, etc. We humans have a hard time with loss. The wise thing to do is to allow yourself to grieve your losses. Tips for your time on Grief Mountain:
It may be best to view this as a mountain retreat where you spend some restorative time each day or each week. You will likely keep coming back to Grief Mountain throughout your journey. Losses take their own time. Part of you will remain on Grief Mountain until your grieving is complete. Respect that. Don't rush. You don't want to move on with your life and leave pieces of yourself behind.
Consider setting up a basecamp on Grief Mountain. You can do this literally or symbolically. If you have the luxury of space in your home or a favorite outdoor spot that would serve the purpose, set up a spot for your grieving work. Make it comfortable and private, with a journal to write in. If you don't have the luxury of actual space, create a spot on the top of Grief Mountain in your imagination - visualize what it looks like and what's there for your support and comfort. You can then take yourself there whenever you need to.
This is a good time for journaling. List your losses. Spend time with them and write about them.
Very helpful to the grieving process are the sister practices of gratitude and celebration. You don't grieve for what didn't matter to you. Acknowledge that you're grieving for your losses because they mattered to you. Express gratitude for their presence in your life. Make it a point to celebrate what is good in your life right now. What is good right now, could be a future loss. So take the time to celebrate it now!
Preservation Peak. There's likely going to be a time in your journey when you realize that there is no returning to the old normal. There have been losses and there have been changes in who you fundamentally are. You may have experienced a change in values, in what you consider important, or in how you want to focus your life or spend your time. You may be motivated to make changes to your self-care. This phase typically happens when you've made it through treatment and are moving into the recovery phase, when you're facing the long-term management of your disease, or when you hear that your disease is terminal. You will find yourself on Preservation Peak when you decide that you want to take ownership of the time you have left. You want to create a new life for yourself, manage your long-term disease as best as possible, or make the best of the short time remaining. Preservation Peak is where you declare ownership of your life. "My old life is no longer working for me and it's time to create the life I want. That is my goal now". Tips for Climbing Preservation Peak:
Taking ownership of your life looks vastly different for different people. It can be as simple as having clarity that "from this point forward I want to be as comfortable as possible". It can be as bold as a major life transformation.
The point is to make a statement about what you want with the rest of your time ... whether it's a short few weeks or the remainder of a normal lifetime.
It can take a long time to get to Preservation Peak, but once there, it's usually a short visit. Just enough time to shout or whisper "This is what I want my remaining life to look like."
Re-Examination Ridge. This is a very small hop from Preservation Peak. The decision to take ownership of your new life requires a re-examination of the life you led before. Re-Examination Ridge is where you do that work. What no longer works for you? What do you want to be different from before? What do you need to do to adapt to the long-term effects of the disease and treatment? Have your values changed and how will this impact your new life? Different-sized goal(s) are treated the same on Re-Examination Ridge. If you simply want to be comfortable for your remaining days, you make that happen by examining what needs to change to make you more comfortable and then sharing that with your support team so they can help you accomplish that. If you are looking to make a big life transformation, then the re-examination is more complex, but it's still the same process. Putting ownership into practice requires being clear about what you want, figuring out what needs to happen to get yourself from where you are now to where you want to be, and creating a plan for reaching your goals one small step at a time. Tips for Re-Examination Ridge:
This is the planning stage. So plan. Figure it out. Be as clear as possible about your goals and what your new life looks like.
This is a good place to get some help. Change can be challenging. Many people are able to create a clear picture of what they want, but struggle to create a plan for it, and are then quick to give up after the first few failed attempts at getting there. Cancer coaches are experts in this process and would be a great addition to your support team.
New Normal Mesa. This is the high, flat ground with a great view and open space. This is where you bring your clear vision and your plan in order to create your "new normal". You've gained clarity around what isn't working for you any longer, what you want to change, and what you want your future life to look like. The New Normal Mesa is where you have the space and inspiration to make it happen. This is where you bridge the gap between where you are now and where you want to be. In that gap is a journey through your own personal wilderness. This is the phase where you take that journey and accomplish the vision of your future life. Tips for living on the New Normal Mesa:
Changing your life in meaningful and sustainable ways is challenging. There are professionals trained in this process - consider turning to them for help.
This will take time and effort. But on this journey, you will have new experiences and learn new skills. You can learn how to make the changes you want to make in your life. There is hope.
You will backslide into old patterns and habits. That's expected. Part of building resilience is learning how to manage those backslides. The long-term maintenance of your new way of living is not about getting it perfect, but knowing how to manage those times when you don't get it perfect.
Closing
Research has shown that having good self-management skills increases positive responses to treatment, the speed of recovery, a reduction in hospital stays, a reduction in expenses, and a reduction in the chances of remission.
As much as a cancer diagnosis can shake up your life, it can also serve as an opportunity to enrich it. Cancer can be a good motivator. This can be the perfect time to address the old patterns and habits that no longer work for you. It's in the wilderness of the cancer experience where you can learn those self-management skills that are going to serve you well.
Along the way, make use of the 6 Mountains metaphor to help you understand where you are on any given day and to help you navigate with a little more confidence and direction.
"The mountain that stands in front of you is the calling of your life, your purpose for being here, and your path finally made clear. One day, this mountain will be behind you, but who you become in the process of getting over it will stay with you always."
- Brianna Wiest (in The Mountain is You)
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