OncoCare
The diagnosis of a serious illness such as cancer can send shockwaves across all aspects of our being, potentially threatening the very core of who we believe we are and what we have construed as a meaningful life. For some, the initial reaction is that of shock, disbelief or numbness. But as the reality eventually sinks in, rounds of emotional upheavals may then arise.
It is extremely important that realise that emotions are NOT the problem. Having intense emotions is clearly not wrong when faced with a serious illness. But if we become overtaken or overwhelmed by disruptive emotions, it can exacerbate our struggles and diminish our capacity to deal with the illness appropriately.
The scope of emotions may include:
• Anger or frustration as we struggle to come to terms with the diagnosis. There may be a sense of injustice or moral outrage, often prompting thoughts such as “why?”, “Why me?”, “I don’t deserve this!”
• Fear, which comes from the recognition that the illness could be potentially life-threatening, or when we start to face up to our mortality
• Anxiety is also common – because of the possibility of grave consequences and grappling with the uncertainty of treatment outcomes
• Grief – as we realise what we may have lost, are losing and will eventually lose from the serious disease. Such losses may include the loss of life, of sense of health, our identity and lifestyle, our livelihood and aspirations, independence and dignity, and the separation from our loved ones, as well as more mundane losses such as livelihood, income, financial stability.
• Regret or guilt might come about when we ponder how we have in some ways contributed to the illness or situation. Shame may arise when we feel that we failed to live up to the harsh standards of social accountability.
• Powerlessness and hopelessness, when we feel so overwhelmed by what the future holds or expects of us that we could not find a response or way forward
• Loneliness and isolation, which result when we feel no one else could understand what we are going through and we withdraw and disengage from others.
Based on our emotional coping, we may become reactive to the situation rather than responsive, resulting in the so-called Fight, Flight and Freeze behaviours. The verbal clues to our reactivity may be listed as follows:
Responding to the situation
In our reactivity, we attempt to turn away from the situation by such behaviours as fighting the reality of the diagnosis, denying or disengaging from the reality, or feeling confused and helpless in self-pity. While turning away from what we are suffering from may provide some superficial and transient reprieve, the unaddressed disease, symptoms and emotions will continue to linger and re-emerge whenever the reactive defences crack and collapse eventually. Desperately maintaining the illusion of wellness and distracting from the reality may eventually become the all-consuming obsession, overshadowing the life of wellness that was initially hoped for.
Some may at this point vouch for the importance of “positive thinking”. But while positive thinking may be useful in helping patients cope with the illness journey, it does not avert the reality of the diagnosis or its implications. A review of the research evidence does not support the notion that a person’s mental attitude, such as fighting spirit or helplessness/hopelessness can affect the survival from cancer. Indeed, the pressure on patients to engage in “positive thinking” may pile more psychological burden on them.
Respond to the situation with some urgency – having such a diagnosis usually requires some life changes that affirm the preciousness of life and time. Waiting for cure, waiting till we feel better, and waiting for others to do their part… wastes precious time and opportunities. There is no such thing as the perfect response, just what is good enough for what the situation asks of us. And if we feel strongly that some issues need to be attended to after the diagnosis of cancer, or some parts of our lives should be changed for the better, or there is something that we need to speak with someone, don’t wait – the diagnosis may just be the wake-up call that you should wait no further.
Attending to emotions
But the alternative, which is to turn towards the reality of the diagnosis, can also be daunting. Many patients and their families feel challenged by the emotional distress that arises from facing the disease. Once again, it is useful to realise that while emotions are natural human reactions to stressful states, they are by nature fleeting and are generally not persistent, unless we choose to hold on to them. It is one thing to feel sad, angry, depressed and lonely in relation to a situation but this is different from saying that we are a sad, angry, depressed and lonely being.
But to ignore emotions or pretend that we are not affected by the diagnosis is also unreal. Emotions inform us that we are hurt or distressed, and it also helps to communicate this to others. In fact, many find it hard to let go of emotions when their hurt or sorrow is not fully acknowledged or processed. We need to give space and time for emotions to emerge, and to attend to our emotional experience with non-judgment and kindness. Sometimes it is to allow ourselves to cry or to be held by others because we are sad or frightened; or sometimes, it is to allow ourselves to rest because we are tired or weak; or to seek company because we are lonely; or to seek treatment when we are in pain. But we can also know that as they subside, there is no need to hold on to them.
What else is there?
When we can attend to our emotions with kindness, turning to the diagnosis and suffering becomes less intimidating. It is only when we turn towards what is really there that we can address the issues. At the same time, we can also be open to resources and opportunities that we would otherwise have not been aware of. What else is there after the diagnosis of cancer? Sometimes we realise our priorities should be re-ordered, or that we had put off something which we should have done long ago. We may find regrets, guilt and even shame, and all of which we can now attend to with kindness. The diagnosis may also compel us to rediscover what and who really matters. There may be opportunities to mend old and make new relationships and expectations. Sometimes, joy and calm is not some faraway place at some point of time in the future, but what is available right now and here, if we allow ourselves to look carefully instead of being caught up in the frenzy of emotions and the busy-ness that we use to hide our helplessness.
When we ask sincerely what else is there, we move from the desperation to curiosity.
Live a life that has changed
Being diagnosed with a serious condition invariably changes life as we know it. Not wanting things to change, or insisting on it to stay the same is often the cause of frustration and despair. Upon the diagnosis of a serious condition such as cancer, there will invariably be many losses – our health, roles, identity, lifestyles, jobs, aspirations, etc. Life may now involve time set aside to receive treatment and to recover. We can allow ourselves to mourn these changes and to grieve for our losses.
And as we grieve, we can also permit ourselves to step into a new life, with the curiosity as mentioned earlier. However, some may only see this new life as a story of illness, filled with events that can be fearful, demoralising and threatening. In the story of illness, there are also many wants, expectations and outcomes, such as to be cured, to get normal again, to get old life back, to not want to be sick or weak, some of which may be impossible to achieve.
What people often fail to appreciate enough is that that story of illness is also the story of love and care. In the storyline of love and care, the focus is about recognising and addressing needs rather than wants. In loving and caring for each other, there are no conditions, no expectations and outcomes, and like the attitude of the ever doting grandmother or grandfather, every grandchild is good as they are and all are deserving of love – there is no need to be anything more than who you already are, including the state of the body.
Reach out
But love and care may be scarce to some, especially when fear and anger are prominent features in the lives of the patient and the caregivers. Sometimes, we just have to recognize that the long-standing issues in our families cannot be expected to change overnight just because someone falls ill. Or perhaps we feel we should not be a burden to others, or that no one can understand what we are going through, or we simply believe we can do this on our own. Times like these may make us want to withdraw behind our defences or self-pity.
But when facing a serious and potentially long drawn healing journey, going solo is seldom useful, contrary to how we have often been socially conditioned to believe. Sometimes, we just need to allow ourselves to reach out to others. This may be a challenge to those of us who have often pride ourselves of our independence and personal achievements. Therefore, it might be useful to realise that everyone, patients, family members, doctors, nurses and other care staff will all encounter illness one day, and the only way for our mutual survival is to receive are from one another and to care for one another.
But when we reach out, we do so wisely: who will serve my needs, rather than to just give me what I want or worse, what I do not want? Even more importantly, with whom do I feel depleted and drained? The reality is that some people help others in order to serve their own needs – and when our resources are more precious, we want to be able to let go of such “help”.
Take care of the body, mind and spirit
The mind and body have always worked together as one entity and the commonly adopted approach to separate them is quite arbitrary. The needs of the mind and body during illness are similar: nutrition, treatment, rest and activity. Nutriment for the mind includes the information and messages that we feed it with. Just as not all “good” food or sophisticated treatments are useful all the time, the mind also needs to take only what it can metabolise. Both the mind and body may be overwhelmed by inappropriate nutriments or treatments. Similarly, both the mind and body needs not just rest but also an appropriate level of activity to maintain their optimal conditions for function and recovery.
In health, we have often pushed the mind and body to their limits as we strive to achieve “life goals”. When we fall ill, we are reminded that the mind and body are the vital instruments of life, without which there is no life, less to say life goals. It therefore does not make sense to keep pushing them to do things that can deplete and stress them, even if these so called tasks are purported to be “beneficial”, “meritorious”, “holy”, or “enjoyable”. This is a time to let go of ideas and notions and go directly to the experience of the mind and body, and to respond kindly to their needs. Needless to say, there is also a need to revise what are appropriate life goals when the body and mind are under siege from illness.
The spirit is the part which provides the balance and meaning to our lives. The spirit is almost always associated with a deep and compassionate sense of connectedness with the divine, the universe, Nature, an ideal or to families or communities. It is the sense of being “one with”. Having a strong faith might be important for some, though being spiritual does not necessarily mean we have to be religious. In fact, blind and unwise beliefs in religious dogmas and rituals may cause more harm as they may leave us feeling discouraged, deficient and disconnected with ourselves and with others.
But having faith is also not simply about professing or declaring our beliefs, there is a need to commit diligently to a practice that sustains the faith. With a faith that is reinforced by practice, we may find the courage and confidence to negotiate compassionately life’s difficulties and uncertainties, so that we can continue to stay grounded AND engage with life and others. The sense of connectedness goes beyond what state of health we are in and the artificial labels and notions about who we are when we become ill. Ultimately, when we hold others and ourselves with compassion, we are always worthy of being loved and worthy of continuing to love others.
Summary
No one would have wished for a serious illness like cancer. While we may never know why it happened to some and not others, these are some suggestions on how we may cope with the impact of the cancer diagnosis:
• Turn towards the situation and suffering; you cannot deal with either by turning away. If there is any issue that needs to be attended to, don’t wait.
• Rise above the drama, the tears and fears – attend to your emotions kindly and without judgment; move from being desperate to being curious – ask: What else is there? Who am I if I no longer have to defend against everything that I am not?
• Having a serious illness like cancer is tough enough; we don’t have to make it any harder with self-reproach or self-pity. This is a time for kindness and compassion, not judgment and righteousness.
• We have gone through life-changing circumstances before and this may be yet another, though possibly a more serious one – learn new things and learn a different way to live; grieve for the loss of life as we know it.
• Reach out for others; we are more inter-related than we think and no one has to go through this alone.
• Take care of the mind, body and spirit; they are the obligatory for our meaningful existence and any strategy for wellness cannot do without any of them.
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