Most people are aware, either directly or indirectly, that cancer causes considerable distress. Emotionally, the uncertainty and fears about the future can contribute to anxiety, depression, and grief. Socially, the fallout on family and friends can be extreme also, to say nothing of the impact on other aspects of social and work life. Finances can be a huge concern if suddenly someone finds they are unable to work. Cancer and treatment also causes physical effects that can be distressed. Fatigue, sleep problems, pain, and other symptoms can be upsetting and sometimes difficult to manage. At least 75% of people, to as many as 95% of people affected by cancer report cancer-related distress, though the level of distress can vary from mild to severe.
More than 10 years ago, cancer programs across the country collaborated on created a distress screening process for patients and at least 9 provinces have implemented screening for distress programs. Though the assessment process and the tool varies somewhat from province to province there are a core set of variables that every province collects. Screening includes use of the Edmonton Symptom Assessment System Revised (ESAS-r) which asks patients to rate themselves from 0-10 on 10 symptoms, with higher scores indicating more distress. Patients are typically screened for distress at the beginning of care and at key transition points, with some provinces screening at every visit. Recent reports identified that, based on these screens, fatigue is the most common symptom causing distress (75.6% of patients reported this), followed by anxiety (56.5%).
Screening is important to ensure that patients receive the best care as soon as possible if they are experiencing distress, so anyone presented with the opportunity to complete a screening tool, should be sure to do so and to be as honest as possible. There are effective treatments for each symptom so there is no need for people to suffer alone. It is important to be aware that sometimes health professionals are rushing and may not adequately address some of the sources of distress. If they don’t, speaking up is important They do know how to help or, if they don’t, they know where to get the help that is needed.
People probably know if they are distressed or not. But, may not know whether they should ask for help. One could start by completing the ESAS-r at the end of this article. Scores of 3 or below on all items suggests either no distress or mild distress. Canadian guidelines suggest that everyone at this level should have information and general emotional support, which includes feeling listened to and knowing where to turn if you should run into difficulty down the road. Health care teams are probably able to provide that in the normal course of care. As well, general self-care strategies while managing the cancer can be helpful – see below.
A score between 4-6 on any item suggests a moderate level of distress. At this level, it is recommended that further assessment of the issue or symptom is needed. Depending on the assessment, one may benefit from additional coaching and support from the health care team, including your navigator, nurse, or doctor. Or, may benefit from a referral to specialized counsellors. Most cancer programs have counselling teams or departments. These vary in name and may be called the “Psychosocial Oncology Department”, or “Patient and Family Counselling Services”, or something similar. These departments have mental health care professionals with specialized training in helping people with cancer-related distress. Typically, there are social workers available to help and often psychologists, advanced practice nurses, spiritual care specialists and psychiatrists.
In addition to the scores on the ESAS-r, most programs are also using the “Canadian Problem Checklist”, which is a list of other areas that might be of concern to people affected by cancer. This list varies a bit depending on the province. An example is provided at the end of this article for an example). Items checked off on this list also suggest that a discussion with your health care team might be helpful.
In addition to tools like a distress screen, other indicators that someone might benefit from talking with a professional about their concerns include things like: worrying about anything excessively, to the point that it creates difficulty in day to day life. Disruptions in sleep or avoiding people or events that were previously enjoyed are other indicators. Loss of a sense of meaning or feeling hopeless about the future may indicate depression or spiritual distress. These experiences are not uncommon in the context of cancer. If they are short lived or passing, a few hours or a day here and there, that’s one thing. But if such feelings and experiences persist for days or weeks, talking with someone can help.
What is counselling like?
Many people have never seen someone for counselling before and may be intimidated by the idea. If that describes you (or someone close to you), you are not alone—lots of people feel that way! However, most people find it is not much different to talking with any other health care professional. If you go to a counsellor, they will ask about the things that are bothersome and listen carefully to the response. In fact, that’s one indicator that the person might be helpful: They listen well and you feel heard and understood. This process can extend over a few visits as concerns are explored and both you and the counselor develop a clear understanding of your concerns.
Once the concerns are well understood, usually the counsellor will work with you to develop a plan to manage those concerns. This probably would include what kinds of things you will work on when you meet and how often you will meet. The counselling might involve coming to understand how you are responding to specific concerns in your life and learning new ways of coping, or learning new ways of creating meaning and purpose in your life. Sometimes the counselling might focus on relationships in your life or more practical things. If your distress is related to physical symptoms, you might benefit from coaching around effective ways of managing those symptoms. The focus in counselling is always on your priorities and the things that you want to focus on. Counselling generally does not involve telling you how to improve things but rather on helping you to identify and develop your own strategies. That said, most counsellors know what the research says about what might help as well as what many other people have found helpful, so they will be a good resource do you as you work on developing some new approaches.
How to Access help?
If you want some additional help, talk to your navigator, nurse, or doctor. They will know what resources and services are available in your area. These might include individual or couples’ counsellors, as well as classes or support groups. If your cancer program has a counselling department, often you can phone and simply ask for an appointment. In the meantime, consider the following strategies for emotional self-care.
General Strategies for Emotional Self-Care
General strategies for looking after yourself emotionally during a cancer experience include the following:
- Draw on family and friends for support. You may find relationships change a lot during your cancer experience. You may become closer to some people than others. Often people really want to be of help – whether practically, like walking the dog, running errands or preparing food, or emotionally by lending a listening ear. Human beings generally have better mental health when they have people they can count on than when they are more isolated.
- Try to maintain some semblance of normal. If you are not at work, that might include developing some new structure to your day so that the whole day is not aimless. Or, it might involve spending time in places that you enjoy and that give you a sense of wellbeing. Places like the beach, a park, or simply sitting outside listening to the birds might come to mind. Daylight and fresh air often provide a sense of well-being, as well as generally being good for healthy sleep rhythms.
- Try to move. Physical activity may be more limited or difficulty than usual, but don’t let that stop you. Even while you are going through treatment some small amount of walking—even 5 or 10 minutes a few times a day—will prevent deconditioning and improve fatigue. It also has beneficial effects on mood and well-being.
- Many people find breath exercises, meditation, or other kinds of relaxation exercises helpful. There are a lot of resources available online or ask your navigator or nurse for some ideas. There are some suggestions about these below.
- Try to maintain a normal sleep routine. Illness often disrupts sleep and the efforts we make to correct and manage those issues can make things worse. Napping is not a great idea if you can avoid it, though periods of rest are a good idea. If you must nap try to keep it to 15-20 minutes. And continue to go to bed and get up at the same time as many days of the week as you possibly can. This will go a long way toward preventing short term sleep problems from becoming long term issues. When we are exhausted, we are much more likely to feel low or anxious.
Cancer Chat Canada provides professionally facilitated online support groups. Contact them at https://cancerchat.desouzainstitute.com
The UCLA Mindful Awareness Research Centre provides free audio recordings of brief mindful meditation. These can be downloaded onto a mobile phone so they can travel with you. https://www.uclahealth.org/marc/mindful-meditations
Wellspring is a Canada-wide network of community-based centres, offering a range of free support programs and services to people affected by cancer (see https://wellspring.ca) including a number that are available online https://wellspring.ca/online-resources/
One of the programs Wellspring offers is the “Healing Journey” which provides many resources including workbooks and relaxation audio-recordings by Dr. Alistair Cunningham