Coping Strategies

I am a psychiatrist with breast cancer and underwent TC (Docetaxel and Cyclophosphamide) chemotherapy in 2021.

These are the things that helped me during chemotherapy and the other challenging stages of my cancer treatment.

1. Acceptance

   Acceptance is one of the hardest things as no one wants to accept that they have cancer and need challenging treatments. Acceptance is realising that not much will be achieved some days, and that getting dressed and eating some food might be the day’s goals. It's about realising that you may not be able to do your usual exercise work-out but you can comfortably do a 10 minute walk. It might mean that you can’t work full time, but you can still get satisfaction from working shorter hours. Acceptance can mean letting go of some goals and finding new ones.

2. Sense of Purpose/ Silver Linings

   Finding a purpose for your days can be very helpful. Focusing on beating cancer as your “job” for now. Appreciating the small things, like a sunny day or spring flowers or making it around the block. Finding the silver linings, maybe less work pressure or time to read or more time with family. For me, putting together this website, writing a book and making cancer documentaries gave me a purpose. Other people focus on a healthier lifestyle, journal their experiences, support others on online groups or set up support groups. Finding a purpose and the positives can be a challenge but can really help your well-being.

3. Connecting

   Whether it's online or in person, connecting with other people going through a similar experience can be incredibly powerful. I have received a lot of support, practical advice and emotional understanding from other women going through breast cancer. They immediately “get” what you’re going through in a way that other people can’t. It can also be a time to catch up with old friends or family whom you haven’t had time to see in the busyness of normal life. Say yes to offers of help, especially during the hard times through chemotherapy. Conversely remember it is ok (in fact, helpful) to say no to things or people that don’t boost your energy levels or well-being.

4. Exercise

   There’s plenty of research evidence showing that exercise helps mental well-being, reduces risk of cancer recurrence and reduces chemotherapy side effects. I’ve been fortunate that most of the time I have been able to go for short walks regardless of how bad I have felt. I generally feel much better after I’ve gone for a walk. I also try and do some yoga, even if it's five minutes of stretching and slow breathing before bed to get into a state of relaxation.

5. Talking

   Putting your feelings, worries or emotions into words can really help. Talking about my cancer has definitely helped me. I have been very open with people and journaled my cancer experience on a day-to-day basis. Somehow putting it into words or getting it down in writing helps to get it out of my mind and stop it whirling around in there. Talking with a counsellor or psychologist also helps to make sense of what I’m going through and to provide suggestions about how I can help myself.

6. Grieving

   A cancer diagnosis involves grief and grief involves feeling a range of emotions. It is 100% normal to have feelings of grief when you are diagnosed with cancer. I have very consciously allowed myself to feel those emotions when they hit me. I try not to push them away but tackle them head-on and feel the emotions. To me this helps to process the grief rather than trying to push it away or “to be brave” or to “just think positive”. Grief tends to come in waves and we need to feel and process those emotions rather than suppress them.

7. Touch

   Touch is one of our basic needs and is important during cancer treatment. Physical touch releases “feel good” hormones such as oxytocin, dopamine and serotonin. Touch also helps our immune system, stress management and sleep. It can be more difficult to have physical touch when we are feeling unwell, are immunocompromised or have physical issues such as surgery pain or chemotherapy lines. Physical touch has been very important to me and my wellbeing. I try and get several hugs from my husband daily. I’ve also been fortunate to find a wonderful oncology massage therapist and a physiotherapist who provides lymphedema massage. There’s something very nurturing about physical touch that seems to help mental well-being.

8. Pets

   There’s research evidence showing that pet therapy helps mental well-being. It’s been helpful for me to have a small furry dog beside me during the tough times. Pets provide both companionship and release of the hormone oxytocin which leads to positive emotional states.

9. Nature

   I feel so much better when I can go for a walk or be in nature. Walking in a forest, swimming in the sea, being barefoot on the lawn all surround us with negative ions that help us feel better. “Blue space” by water and “Green space” around trees has been found to increase physical activity and lower stress and anxiety levels.

10. Sleep

    Finding ways to improve sleep is a very important part of wellbeing. I’ve occasionally taken medication to help sleep during periods when my sleep has been disturbed such as when taking steroids for chemotherapy. I try to do a few minutes of calming yoga and breathing before bed and occasionally listen to sleep apps. This avoids sleep deprivation and the vicious cycle of exhaustion and worsening mental and physical health. Sleep is important for our immune system and recovery, as well as our mental well-being.

Cold Capping and Mental Health

The aim of cold capping during chemotherapy is to reduce hair loss. The results of cold capping are variable and it is difficult to predict outcomes for individual people. Some people still lose a lot of their hair and other people retain almost all their hair. People who are successful with cold capping report that keeping their hair helps them to feel normal and that it is easier to get back into everyday life after chemotherapy.

Cold capping can lead to some anxiety as hair loss is closely monitored during chemotherapy. Some people still go through hair loss grief if the cold capping is not successful. There is some evidence that people who are unsuccessful with cold capping have worse mental health than people who didn’t cold cap at all.

It is very important that people who try cold capping have realistic expectations about the likelihood of success for them with their chemotherapy regime. Unrealistic expectations are likely to lead to a worsening in mental health if cold capping isn’t successful. It can help to remember the protective benefits for hair follicle health and hair regrowth plus prevention of permanent hair loss, even if short-term hair retention is not successful.

Paxman cold capping has an excellent page on their website where they go through questions about expectations of cold capping. This Decision Making Guide allows people to decide whether cold capping is right for them. It also shows the percentage chance of keeping at least 50% of your hair cold capping with different chemotherapies. The results and questions are mainly based on a large international CHILL patient registry.

https://coldcap.com/cold-capping/decision-making-guide/

Many of the cold capping research studies have looked at mental health outcomes as part of the study. Several studies have shown that chemotherapy induced alopecia was a traumatic aspect of treatment e.g. Cash 2001, Tierney 1992, Van den Hurk 2010, Choi 2014, Trusson 2017. Full references in Rezayee 2020 paper on Research page).

Rezayee 2020 (full text on Research page) looked at people’s experience of Penguin manual cold capping using questionnaires and recorded interviews. This was part of a small pilot project. In the “was it worth it” questionnaire 90% felt that it was worthwhile, 100% would recommend to others, 80% would do it again. 50% reported improved quality of life post-treatment and 75% at a later interview. The same results came from the question whether it was a better experience than expected. A minority of patients were upset by their hair loss during cold capping. 30% in this study were upset by hair loss during cold capping, which is consistent with other studies which showed 30-40% upset about hair loss. Questionnaires showed an improvement in emotional function and future perspectives after treatment with cold capping.

In the follow-up interview, the majority of patients thought that their quality of life would have been decreased without cold capping, due to hair loss “chemo head” and negative impacts on career, privacy, self-esteem and self-image. All of the patients said that chemotherapy induced alopecia was a visual reminder of a cancer diagnosis and that hair preservation meant that they could ignore or forget about the cancer. Preserving privacy and maintaining control about disclosing the cancer diagnosis was a significant effect.

Preserving hair led to improvements in self-confidence, allowing patients to socialise during and after treatment without becoming self-conscious. Maintaining a “normal” appearance meant that they could continue life outside of cancer and have “a little control over something”, including their ability to work. Preservation of privacy and self-image contributed to physical emotional and social wellbeing. Several patients thought that cold capping helped them to keep their job and continue working. The use of a caregiver for cold capping led to a sense of dependence but also the courage to continue chemotherapy and other positive results.

Cold capping was acknowledged as time consuming and repetitive and that this might increase pressure, stress, anxiety or become overwhelming for patients and family. There were mixed feelings about family members being involved as cold capping assistants. The majority said that there would be financial barriers to cold capping if they were not involved in the Rezayee study. It was noted that there were high financial costs for renting caps and purchasing supplies.

Patients talked about the importance of careful decision making for cold capping, to work out the benefits and costs of cold capping for them. This study included a questionnaire to help patients decide about whether cold capping was right for them. It was noted that addressing the benefits and harms of cold capping may potentially improve patient preparedness, satisfaction, outcome and overall wellbeing of patients.

Due to concerns about chemotherapy-induced alopecia, out of 10 patients, one patient refused chemotherapy initially and another was hesitant. Other research has found that 8% of people refuse chemotherapy due to not wanting to lose their hair. Different ethnicities seem to have higher levels of distress and refusal of chemotherapy. There does not seem to be New Zealand data on this issue.

https://www.jaad.org/article/S0190-9622(10)00766-8/fulltext

Chemotherapy-induced alopecia (CIA) affects quality of life and potentially impacts decisions regarding the risks and benefits of treatment.

https://www.chicom.be/sites/default/files/full_text_article_25.pdf

“Among side effects, alopecia is considered one of the most traumatizing and distressing experiences for women with breast cancer [7–14]. Often, losing hair has been described as a harder experience than losing breasts [13,15], and some patients refuse chemotherapy because of the expected hair loss [16]. Breast cancer patients experience physical, emotional, and psychosocial discomforts due to chemotherapy-induced alopecia (CIA) that may hinder patients’ quality of life and their ability to cope effectively with cancer and its treatment [17,18]”.