A cancer diagnosis is a complex and life changing experience that disrupts almost every aspect of daily life. Dealing with the physical symptoms and working with your oncology team to determine the best course of treatment are the first priorities but it’s important not to overlook your psychological and emotional wellbeing.

Valion Health’s Clinical Psychologist, Rebecca Van Lloy tells us about some of the thoughts and feelings you may experience as a cancer patient and the steps you can take to look after your mental health.

Make space for your feelings

Shock and fear are typical first responses after a cancer diagnosis, often swiftly followed by what Rebecca calls ‘problem solving mode’:

Cancer patients have to hit the ground running – there’s a whole new language to learn, so much new information to get on top of and so many decisions to make. There are lots of appointments and they have to figure out who all the key players are. And all this has to happen around all the usual life commitments like work and family life. It’s a massive logistical puzzle.

On top of these practical issues, you might also experience a range of emotions, including:

• Guilt: ‘I feel bad about how my diagnosis is impacting everyone else in my life’
• Overwhelm: ‘How am I going to continue to do all the things I’ve always done?’
• Anxiety: ‘How am I going to talk to my family and manage their concerns?’
• Fear: ‘Am I going to be okay?’
• Grief: ‘How and why did this happen to me?’

With so many practical and emotional factors, processing a cancer diagnosis takes time. Rebecca highlights how important it is to make space for that to happen:

A lot of people become task-focused and put pressure on themselves. But it’s okay to be frightened and it’s helpful to learn to be comfortable with being uncomfortable about your diagnosis. We talk about the tyranny of positive thinking and there’s a lot of pressure on people when faced with a cancer diagnosis to be strong and stoic. There’s a place for this, but there’s also a place for doubt, uncertainty and fear, and cancer patients need to be supported to feel these emotions.

Information is key

Emotional responses ebb and flow during the different stages of treatment but Rebecca believes that early information is key to successfully navigating the relationship between your physical and psychological wellbeing during cancer treatment:

Cancer patients do well if they know what to expect, understand what they’re experiencing and know whether what they’re feeling is ‘normal’. To do this they need information.

Rebecca says that early referral to a psychologist can help you to gain access to a strong foundational structure along with positive education and information:

Psychologists can work with patients to set up a foundational framework, so they understand the relationship between their physical and psychological symptoms. This ‘scaffold’ gives people something to stand on. It can help them understand why they’re struggling to manage their stress or emotional responses.

A psychologist can help you to understand what to expect physically and how this can influence how you think, feel, and respond to a situation.

Managing fatigue

Fatigue is common among people living with cancer and it can be disruptive and frustrating. It differs to normal tiredness in that it doesn’t go away with rest or sleep and is often described as a mental and physical exhaustion.

Symptoms of fatigue during cancer differ from patient to patient but can include having little or no energy, muscle aches and pains, weakness or slowness, trouble thinking clearly or concentrating, and the inability to undertake daily tasks. Timeframes can also vary – for some people symptoms improve 6 to 12 months after treatment ends but for others it can be much longer.

In Rebecca’s experience, fatigue is the cancer symptom that has the most significant impact on a person’s psychological wellbeing and if it isn’t managed effectively can spiral into low mood or anxiety and depression:

What makes us tick as human beings is a sense of competency and independence. Cancer related fatigue can shake that foundation to the core as people feel as though they’re not pulling their weight or contributing fairly, and this has a huge impact on wellbeing.

According to Rebecca, a common trap that people fall into is expecting capacity levels to return to normal once the acute phase of treatment has passed. She says that it’s often 3 to 9 months after the acute treatment stage, when a patient is relying less on their support system, that fatigue can become complicated:

There’s an expectation that energy and activity levels will simply bounce back to where they were pre-diagnosis. While exercise and maintaining a healthy diet play an important role in dealing with fatigue, managing expectations over time is key. The simple fact is that recovering and rebuilding after cancer takes time and a lot of energy, and the trajectory is different for everyone. We can avoid people being set up to fail by simply reminding them that their recovery will be as unique as their cancer experience.

Fatigue usually gets better over time but it’s important to have an effective fatigue management plan in place. The Cancer Council’s tips for managing fatigue include:

• planning a loose daily schedule or routine based on how you’re feeling
• saving your energy for what you want or need to do most
• pacing yourself – including regular short breaks and resting when you need to
• eating as well as possible and drinking lots of water (and avoiding alcohol and smoking)
• being physically active (in consultation with your healthcare team)
• trying relaxation and meditation techniques
• asking for and accepting help from family, friends or neighbours.

A marathon not a sprint

People often assume that getting to the treatment finish line means they’ll simply be able to return to their life pre-cancer but life in the ‘post-treatment’ phase comes with a range of psychological complexities. Those who’ve had cancer can experience:

• struggling with what cancer ‘survivorship’ means
• fear of recurrence/progression
• anxiety in the lead up to regular check ups
• guilt about not yet feeling ‘normal’ and making life assessments
• existential worries
• a sense of indebtedness to people who provided support during treatment
• a desire to change their life and reprioritise
• dissatisfaction with social dynamics
• an urge to redefine boundaries and seek new ways of living life.

Rebecca knows that the worry doesn’t stop when treatment does:

Cancer is a multi-faceted experience and worries can rear up at any time. I was talking to a patient 3-years post treatment, and she told me she had a regular check-up approaching that was causing her anxiety to flare up. She felt alone in her experience of fear as her family just kept reassuring her it would be fine and not to worry. It was helpful for her to know I understood her experience of living with uncertainty and that she didn’t need to justify her emotional response.

Remember it’s important to be kind to yourself and get support when you need it. A psychologist can work with you to develop more assertive methods of communicating with family, friends and employers and help you to find words to describe your new hopes and aspirations as well as achieve them.

Valion Health supports eligible Teachers Health members through the Cancer Support Program.