How can I look after my emotional support needs?

Emotional and psychological needs remain a significant unmet need for people diagnosed with cancer. Cancer treatment interferes with how you think, feel, move, and live. Most people have an in-built optimistic bias in life that is cultivated by noticing what is going well and what one is ‘grateful for’. However, sometimes the circumstances we face call for more than simply applying a positive attitude and placing an emphasis on gratitude. 

Making sense of the emotional and psychological impact of cancer is as important as understanding the physical side-effects of your treatment. A diagnosis of cancer and the experience of cancer treatment, stretches most people’s coping. This is because most of us are used to experiencing relatively good mental health, with an ability to work through stress and problem solve life challenges successfully. But cancer is not a problem to be solved.

Cancer patients generally ‘get on with life’, connect with others, return to work and employ a range of coping strategies to ward off intrusive and unwanted thoughts and emotions. However, this can sometimes come at an emotional cost. Individuals can feel worn down by the ‘energy’ it takes to maintain a positive outlook, reframe sensations, and redirect thoughts. 

People describe a feeling of grief or sadness that is difficult to articulate, but is often expressed as “loss of freedom” or “care-free no more”, we recognise this as intangible loss. 

Cancer patients are faced with trying to make sense of the countless uncertainties ahead of them from diagnosis (Has my cancer spread? What treatment do I need?), to treatment (Will these side-effects be permanent?), through to recovery (Will I be able to return to work?) and ultimately whether they will reach the coveted ‘5 year survival milestone’. These uncertainties can be difficult to share with others and can leave individuals feeling alone in their experience. 

While there is no question that adopting a healthy mindset is an important part of supporting yourself through treatment and recovery, there needs to be space to say “this is really difficult”, “I am afraid, I am not sure I can do this”, or “I am sad about how my body has changed”. Coping with loss and change is a difficult process, and whilst we may adapt and overcome our circumstances, it won’t alleviate or eliminate all of these feelings. Developing a healthy mindset is about learning to balance fear and hope, and grief and gratitude, and not about deciding how positive (or negative) you are!

The purpose of this topic is to start a conversation with your Valion Oncology Care Coordinator about how to maintain your emotional and psychological health during and after cancer treatment and where to access additional support if you find your coping being stretched.

Click here  to hear from one of Valion’s expert team members about supporting the psychological wellbeing of cancer patients during and after treatment that you may wish to read or share.

How you cope with and adjust to a diagnosis of cancer, or recover, depends on many factors:

In addition to the range of life circumstances that can influence emotional wellbeing, physical symptoms and side-effects can significantly impact the emotional and mental health of cancer patients. 

Fatigue and pain are the two main symptoms that can negatively impact your mood and outlook, if left unmanaged. Feeling exhausted and overwhelmed by fatigue or experiencing physical suffering that you can’t control or alleviate, can lead to feelings of distress, helplessness and despair due to being in a state of physical duress. Therefore, is it important to speak with your treating care team or your Valion Care Coordinator about how to proactively manage these symptoms.

Other treatment effects that can negatively affect your mood or sense of wellbeing include:

• Change in your physical capacity – inability to exercise or participate in physical activity at an intensity that helps you regulate your levels of stress or balance out your emotions.
• Changes in your thinking and memory – not being as agile in your thinking or planning skills, or having difficulties communicating can lead to feelings of anxiety and self-frustration.
• Steroids – changes in mood (e.g., agitation, tension, panic, tearfulness, irritability) and sleep can be experienced whilst taking, reducing and post-steroid use (for several weeks) depending on the dose prescribed and how long they are taken for.
• A change in your appetite or eating patterns, an inability to enjoy food or experiencing a change in your weight (e.g., loss or gain) can leave you feeling distressed or down/low in mood.
• Changes to your sleep patterns or sleep quality.
• The countless examples of tangible and intangible losses resulting from all forms of treatment –  your hair, body or facial hair (quality/quantity/colour), body satisfaction, scarring and body changes, loss of sex drive, loss of fertility (temporarily or permanently), loss of security, loss of finances, loss of function, loss of hopes and plans for the future and loss of identity. 
• Hormonal changes (oestrogen and testosterone suppression or reduction, adrenal or thyroid involvement) due to surgery, chemotherapy or hormone therapy.

A range of emotions and thoughts can ebb and flow at different times throughout the cancer experience:

• the initial shock or disbelief and coming to terms with a cancer diagnosis
• coping with the physical and psychological impact of treatment
• fears about recovery and if you will be able to move forwards
• living with the uncertainty associated with surveillance and concern about cancer returning. 

It is important to differentiate between how you feel about your cancer prognosis or expected outcome and processing, adapting and adjusting to what you have lost, what has changed and what may never be the same. Cancer patients often struggle to reconcile their feelings when they have been told they are likely to have a favourable outcome –  “If I am one of the ‘lucky’ ones, why do I feel so frightened and overwhelmed?”.  It is normal to experience a feeling of uneasiness or less confident, reassured or buoyant than everyone else when you ring the bell at the end of treatment or get ‘good results’ from your treating team.

Downward comparison is being compared to, or comparing yourself with, someone who has cancer who is considered ‘worse off’. It can lead to feelings of guilt and a sense of delegitimisation of your cancer experience, which can negatively impact your outlook and how you support your emotional needs during treatment. These statements tend to begin with  “at least I didn’t have to … have chemotherapy”, or “I only had to … have surgery and radiation.”

There may be moments when you are overwhelmed by your feelings, which can be unsettling in itself if you have not experienced emotion in this way before. Whilst strong feelings can be uncomfortable and you may be unsure how to respond or what emotion is behind it, it is normal and healthy to experience any number of emotions, without this indicating that you are not coping. If you are having difficulty identifying your feelings it can be helpful to write down what is happening (thoughts, sensations) and what was happening leading up to the emotion.

Common emotions include:

• Sense of overwhelm
• Distress
• Feeling discouraged
• Feeling uncertain, tentative or apprehensive
• Feeling of unexplained dread (i.e., ‘something is going to go wrong’)
• Agitation, irritability or restlessness
• Feeling on edge or that you are constantly under pressure
• Helplessness
• Feeling frustrated, resentful or angry
• Guilt
• Feeling lost – loss of meaning or purpose
• Feeling empty or numb
• Lonely or disconnected
• Sadness or grief
• Sudden anxiety associated with exposure to a place, sound, colour, smell or object associated with your diagnosis or treatment
• Anxious, fearful or panic attacks
• Depressed, hopeless or in despair

When others use labels such as “anxious” or “depressed” cancer patients often feel misjudged and misunderstood. It can be helpful to build up your feelings bank!

People often find it difficult to identify or name the emotion they are feeling- using an emotion and need identification wheels can help! . 

Person: “You must be really anxious about your scan tomorrow”. 

You: “No – I am very hopeful about my situation and outcome. I am feeling apprehensive about my upcoming scan tomorrow, but I have taken some time out tomorrow and I plan to look after myself to get through”.

Most cancer patients struggle to know what is normal or to be expected, so will try to ‘ride things out’ in the hope that things will improve on their own. They will often choose not to signal to family and friends or their treating team that they have experienced a change in their emotional or mental health. There can be many reasons why an individual may decide not to disclose or address their emotional support, but most cancer patients will report feeling desire to present as ‘strong’, ‘resilient’ and complying with every aspect of care that has been recommended without complaint or question. 

Rather than being able to openly share their emotions and gain unconditional support, they focus on ‘being positive’ and having a ‘fighting mindset’. This overemphasis on positivity can be emotionally harmful for people going through cancer and  can leave people feeling isolated and guilty. Toxic positivity can get in the way of individuals’ identifying their emotional support needs and asking for help.

Other barriers to addressing emotional support needs during or after treatment may include:

• Concern about being prescribed more medications if they open up about what they are feeling.
• Feeling overwhelmed by medical appointments already and not wanting to add another appointment or health professional in the mix.
• Fear that talking about your concerns will make you feel worse.
• Feeling guilty about the additional cost and healthcare burden on your family.
• Fear of being seen as ‘not coping’, ‘negative’ or ‘ungrateful’. 
• Preference for working things out on your own. 
• Direct experience of being told to be ‘more positive’ when you have previously attempted to share how you are feeling.
• Desire to be seen as ‘coping’ – such an emphasis in mainstream society on “cancer warrior”, “beating cancer”, “fighting cancer”, “*bleep* cancer!”.
• Reluctance to attend a support group or join an on-line forum- feeling you don’t have the capacity to hear about other people’s experience of cancer or fear that you may be exposed to something confronting that may distress you or be unhelpful.

There is no right or wrong way of coping, but it is important to recognise what has been helpful (or not so helpful) in the past. This can help you recognise when you might need a little more support. Determining how to support your emotional needs can be difficult when you are focused on getting through your next treatment milestone, or your physical recovery and preparing to return to work and life. People are often ambivalent about whether they need to speak with someone in a formal setting, like a counsellor or psychologist. 

Most emotional needs sit below the threshold for asking for formal help. By this, we mean that most people will think the problem isn’t ‘serious or severe enough’ to warrant a referral to speak with someone, especially if it isn’t interfering with their life or relationships in an obvious way. Within the context of cancer, the threshold for reaching out to speak with someone is much lower than you might consider, and there is a strong emphasis on early referral and support to circumvent difficulties down the track.  

It is okay to reach out and talk about loss and change, it doesn’t mean you are not coping or your concerns are impacting your mood, relationships or daily life. Having said this, sometimes people may experience levels of anxiety (i.e., needle phobia or claustrophobia), past trauma that has resurfaced or depression that is interfering with their treatment. 

In both instances, we recommend talking to a psychologist or counsellor who is experienced talking to people going through or recovering from cancer treatment. They have a good understanding of cancer, how it is treated and the key issues that people face, so it takes the pressure off you having to ‘explain’ or educate them first in order to get the help you need.  

There are also a number of other ways that you can support your emotional wellbeing:

• Keep a diary – see if you can find a relationship between your mood or anxiety and specific events or symptoms (i.e., are you more emotional when your fatigue is high?)
• Write it down or journal– organising your thoughts on paper can be easier than trying to work things out in your head when you are experiencing cognitive changes.
• Address toxic positivity with family and friends – let them know to be authentic and stay connected you need space to experience your full emotions.
• Stay connected – let people know if you are feeling you have lost control over your decisions or daily activities and what you would like to reclaim.
• It is okay to not want to be part of a support group! Whilst peer support can be helpful it isn’t for everyone. Speaking with someone one to one, can be a good place to start.
• Incorporate complementary therapies such as mindfulness, relaxation, and yoga can increase your sense of control and reduce feelings of anxiety and help you manage your thoughts.
• Address practical issues and reach out for support if issues such as finances are impacting your emotional well-being.

Develop a daily practice to help you be more in tune with your emotions and thoughts so that you can respond to your needs.

• Develop a Cancer Mind Plan – this an online tool to help you get a snapshot of how your mind is tracking and self-help resource to support your mind and well-being during and after cancer treatment.
• Open communication with your doctors, friends and family is essential to living well during and after treatment. We have developed some key resources to assist with communicating more effectively  and how you might approach these conversations and how to share your feelings.

Cancer Council Podcasts – The Thing about Cancer series covers a range of topics from adjusting to diagnosis, managing fear, finances and family. 

Head to health can direct you to more  general mental health support and where you can access more immediate help.

• Talk to your treating team or Cancer Care Coordinator about addressing your emotional and mental health needs to support living well during or after treatment. They can refer you to the Psycho-Oncology care team within the hospital. 
  • The Psycho-Oncology team is often made up of a social worker, psychologist or psychiatrist who has specialised in the field of cancer care and their families and carers and working in the hospital and cancer treatment centres. 
  • Most services will see individuals up to 12 months post-treatment, so it can be a good place to start if you have completed your treatment.

• Cancer Council has access to counsellors who can listen to what is going on in your life. Free counselling may be available through your local Cancer Council – call 13 11 20 to find out what support you are able to access.
  • Peer support services – it can be helpful to share your thoughts and experience with other people affected by cancer. The Cancer Council can link you with individuals, or support groups, in person or online or visit cancercouncil.com.au/OC

• Speak with your GP who can see if you can access Medicare related sessions with a psychologist in the community. It can be helpful to speak with a psychologist who has experience working with clients experiencing a change in their health otherwise search for “oncology psychologist” or “psycho-oncology” in your area. Your Valion Care Coordinator can assist in locating an appropriate psychologist or service in your area.