10 ways of Advocating for your Health, Healing and Wellbeing after Cancer Therapy
Your cancer treatment is complete and you are wondering what comes next. Every person’s experience of the next steps is different. While standards in oncology care are trying to make education about the next stage of your treatment a routine part of your care, unfortunately that is not always the case. Research continues to demonstrate the benefits of improved symptom management, physical activity, stress reduction, and nutritional choices as helpful for patients after cancer both for recovery and prevention of recurrence. Did your doctor speak with you about life after cancer treatment? If not, you are not alone. Unfortunately, the pace of change in medical settings is slow. It takes about 17 years for a proven, healthful practice to become standard in western medicine! SLOW. REALLY SLOW!! I dream of the day when every person who has received a cancer diagnosis will be informed of not only treatment options but also options for health, healing, and well-being during treatment AND after cancer treatment. I want you to know if you are thinking you are a little “crazy” there is a “normal crazy” when dealing with cancer! In fact many people are sure that they are the only one thinking about how hard it is after cancer! Consider yourself not only your medical advocate when discussing your after treatment needs with your healthcare team but also an ambassador for what benefits all people who have been treated for cancer!! Speak with your oncologist and other members on your care team including surgeons, radiology oncologist, social workers, nurse practitioners, etc. Let them know what you think is important for your healing and what practices you have found helpful. I learned so much from the folks that I worked with and continue to use these lessons! AND YES!! Research is catching up with the benefits of many healing practices like nutritional choices, physical activity and stress reduction! Increasingly research in both quality of life and cancer prevention indicates health practices and behaviors that are helpful to healing. You may be months or even years out from your treatment and still find some of these pointers helpful.
1. Discuss your Treatment Summary and Survivorship Care Plan with your doctor (treatment team)
The Commission on Cancer (COC) sets standards for both large academic cancer treatment centers and community oncology treatment centers. New standards suggest that all patients receive a summary of their cancer diagnosis and treatment as well as recommended follow-up schedule. There have been multiple challenges with actually implementing this plan. Ideally this plan outlines your diagnosis, staging and treatment as well as your surveillance post-treatment and identifies wellness behaviors and resources. Surveillance guidelines indicate what type of blood work and/or scans you are supposed to have a specific intervals. The plan may also let you know if there are potential late term effects from your treatment. If you haven’t received one ask your team. For more information about treatment summaries and care plans the American Society of Clinical Oncology (ASCO) is one option.
2. What concerns top your list? Discuss these with your care team
The transition from being seen by multiple care providers (doctors, surgeons, nurse practitioners, nurse navigators, social workers, radiation therapists, etc) on a regular schedule to not any providers for months can be a jolt. You are supposed to be all done with cancer and treatment. The thought is there is not too much happening. Right!!!! What are you finding most challenging? Do you want to know about health practices, medications or lifestyle choices that maybe of help? Do you know what your cancer surveillance involves? Click here for a checklist of symptoms.
3. Don’t hesitate to ask for resources and referrals
Discuss your needs with your nurse navigator or cancer resource center personnel. You may also have access to a support group or online community. Don’t hesitate to ask your questions! You may be interested in general information or very targeted information. For example, if you have been treated with radiation or surgery and have had lymph nodes involved it may benefit you to meet with a specially trained lymphedema therapist for evaluation and education. Visit lymphnet.org for more information. There are often wonderful opportunities available including retreats, expressive arts workshops, nutrition and cooking classes, activity opportunities and outdoor programs.
4. What To Know about Survivorship
Know that these next steps in your treatment, your healing and recovery, are unique to you. Some people may be exhausted (fatigue) and others not. Not knowing how long recovery takes can be crazy making…and for some depressing. Not comparing yourself with others and being reflective and honest about the challenges you face will aid your healing process….and healing and recovery takes time. survivor Kimberly Fink's
"Top 10 Things I Wish I Would Have Known About Life After Cancer" by Kimberly Fink, cancer survivor and founder of Treatmint Box
5. Healthful Eating
Start where you are, without judgement, and educate yourself about the benefits of eating well and cancer prevention. Some types of cancer have more research than others in terms of food choices benefitting reduction of recurrence. But everyone feels better when eating better- Really! Consider whole, real food (minimally processed) . I often encourage people to look at the ingredients listed on the food package. If you do not know or can’t pronounce more than 5 ingredients you might want to think about other choices. Consider your food and drink choices and evaluate if you would like to make any changes. How you eat does impact your health and your mood. Your cancer center may have a nutritionist/dietician available for consultation. There is A LOT of great nutritional information out there and A LOT of not so great advice. Some people find that the medicines that they take after treatment make it really difficult to control weight. Or you may have had an intestinal cancer and eating all “the healthy foods that folks are talking about” causes havoc with your system! Know that these steps are individual to you, for your body. One of my favorite resources is “The Science and Alchemy of Yum” and Rebecca Katz’s enthusiasm, knowledge and recipes!!
6. Tend to Your Body
How are you feeling physically? Your body has been through a lot! I am talking about reconnecting with your body. For some that might include regular soaks in a warm tub. Research demonstrates that exercise can help with fatigue and reduce the risk of recurrence. BUT I have been told that for some EXERCISE is a dirty word!! Think of it as activity or movement or dancing-make the language work for you. Consider massage or movement classes like yoga, Tai Chi, Feldenkrais, belly dancing, zumba, hoola hooping. Maybe your cancer center has research studies or programs for exercise. Regular walks in nature, tango classes, dancing in your kitchen… even bed yoga! Oh do give it a try! You can be in your bed and stretch for 5 minutes in the morning and the night. Your body has been through a lot! Take some time to think about what might be helpful to you at this time! Increasing your physical activity helps mood including anxiety and depression, sleep, body image, sensuality, libido and weight control.
7. The Power of Community
Some of you may have had the experience that folks were all around during treatment but now that you are done where are they? You may find yourself disappointed by a friend or family member. For many people the time after treatment can seem lonely. This can be a time to reassess what is important to you in terms of friendships and communicating your needs. You may be hesitant to talk about what you are going through or it may seem that folks “just don’t get it.” Consider having a thank you party for the folks who helped you, expressing not only gratitude but also a few of the challenges that you still face.
I volunteer for a wonderful organization that provides outdoor programs for young adults (18-39), First Descents. I am in awe of the power and often the magic of this community. Young adults, often not knowing anyone else with cancer, spend a week with a whole group of young adults all dealing with cancer. They challenge themselves kayaking, surfing or rock climbing. They all have already demonstrated courage by fighting cancer! I want to encourage you to think about your circles of support. Do you want more support? Do you want to interact with others who get some of your challenges? There are many avenues to consider like finding a support group or a wellness series or yoga classes or a painting class. There are great resources online too. This can be a time to reassess what is important to you in terms of friendships, relationships and what you want your community to look like. You may find being around people difficult but community can include your furry friends too! Who is in your tribe? What do your circles of support look like? Has that changed due to your cancer?
At First Descents, we define our lives by the depth of our friendships, the adventures we live, and the moments of laughter, peace, fear, and humility we experience. We remember the important things; the defining things, like brilliant sunsets, big rapids, glassy waves, and endless rock faces. We’re fueled by the feeling of standing up on a surfboard for the first time, paddling through whitewater, and topping out on a climb, always surrounded by friends who feel more like family.
8. Educate Yourself and Your Loved Ones
Many people complete treatment and think that life “returns to where you were before cancer”. Or maybe your loved ones or friends believe that “everything is okay now” and you are “done with cancer”. Does something feel different? YES!!!! Any huge life event changes us and cancer is a big life event. Allow yourself time to heal, to find your sense of balance. There may be all sorts of emotions that are difficult to understand and explain. Processing your experience may take time. Sometimes working with a professional to process emotionally, mentally and physically all you have been through can be really helpful. Give some thought to your healing plan and address the emotions that are present whether anger, pain, grief, fearfulness, anxiety, depression, being overwhelmed by uncertainty or for some PTSD. The National Cancer Institute (NCI) has a resource for you and for your caregivers, Facing Forward.
9. Mind/Body are One
The process of healing from cancer may include addressing your inner and outer experiences. All of you-BODY, MIND and SPIRIT. The approach to your healing may involve different ways of tending to your body. Many find benefit from acupuncture, acupressure and massage. Others find journaling to be extremely helpful. Some benefit from meditation which may help to improved sleep, cope with pain, lessen anxiety, reduce the intensity of fear, and benefit physiological factors like lowering blood pressure and pulse. Some might like guided meditations and others may find that prayer, breathing exercises or yoga classes as helpful. I do believe we all benefit by creating a space for healing. In stillness there can be both awareness and revitalization. Meditation and mindfulness can help you look at obstacles with new eyes. Mindfulness is the act of bringing attention to the present moment. One mindful practice is a walking meditation (for many being in nature feels healing) and taking the time to consciously observe the colors, the plants, the trees, the sky. Noticing with wonder the sounds and the smells. You may want to express gratitude for your sensory perception appreciating your body’s ability to move, to feel, to see, to smell, to hear. What helps you to feel healthier and more connected physically, emotionally and spiritually?
10. Healing is a Process
Your story is your own. Depending on your story, depending on your cancer diagnosis and treatment, depending on the challenges you currently face, depending on all the other factors in your life, feeling whole again is a process. Each step is a first step. The direction you want to go is determined by what you value. Sometimes this may involve change and change is often challenging. AND cancer has already changed enough of your life!! Taking the time to reflect on your story can be helpful. Finding people and places that can support you help. Journaling, music, art and creative expression, being with loved ones, pushing yourself to try something new, travel, retreats…give some thought to what resonates with you and indulge!
Over the years many people have taught me the value of these steps to thriving after the ordeal of cancer. I know too, for some, life after cancer is an on-going process of dealing with surveillance, and uncertainty and recurrence scares and being challenged by getting what you need. If you are curious about what might be helpful to you lets talk during a discovery call! If you are already sure about taking the steps and feeling ready to commit, lets start with a discovery call and map out your plan.
Please feel free to share this with your friends, family and medical team. I am so appreciative of the comments that you make and the suggestions for future blog post so keep them coming!