When you have late stage cancer

Scientific advances now mean that there are treatments for all types and stages of cancer1 even late stage cancer.

Estimated read-time: 23 minutes

  1. A late stage cancer diagnosis
  2. How much time do I have?
  3. Acknowledging the emotional pain of late stage cancer
  4. Denial
  5. Anger
  6. Blame
  7. Guilt
  8. Treatment decisions of incurable cancer
  9. Facing your own mortality
  10.  Living with incurable cancer

A late stage cancer diagnosis

Hearing the words form the oncologist’s mouth that your cancer is at a late stage or even incurable is a very surreal moment.

It is so shocking that it can be either be heard with such clarity and focus that you realize the magnitude immediately, or you may be only able to process this prognosis in a limited way, your brain having seized up simply paralyzed by fear.

In a bid to self-protect, your mind can shut down and the whole scene can be experienced in a detached, out of body way as if you are in a film or it is happening to someone else. A wave of panic, confusion and terror can follow when you slowly realize that yes, life can that cruel.

Shock manifests itself as an inability to think and a can create a void of emotion, as your breathing slows and your whole system feels like it is in shut-down. In your mind’s eye all that you can see is an expansive, desolate horizon and the unclear future, you are absolutely lost to the moment.

Panic then sets in as the butterflies you felt in anticipation to hearing the news, quickly turns to feelings of sickness to the pit of your stomach as your mouth dries. Time slows, your breath shallows as your mind races.

In the background, as if through a pane of glass, your oncologist will be talking about treatment plans, options and supportive measures. The onslaught of different questions, scenarios, possibilities along with your own confusions and reflections currently racing through your mind is all consuming and difficult for your assaulted brain to handle.

The overwhelming detail of which washes completely over you and will be not taken for perhaps a long time to come. Although you can feel yourself nodding along and repeating important points, you are already deafened by the initial body-blow, utterly absorbed by the shock, winded to the core.

Hearing no more, you slowly become aware of the soothing feeling absolute denial could offer as you slowly choose to lean into this delusion. Your find that your only hope of coping in this moment is to let yourself succumb to merely existing in the vacant headspace of the bubble you place around yourself. ‘This can’t be happening’ is the over-riding thought as you pull this comfort blanket around you.

Late stage cancer? How much time do I have?

How much time do I have- late stage cancer

Advanced cancer, metastatic cancer, late stage cancer, incurable cancer or a terminal disease, each term describing the varying shades of grey found in the storm clouds above you.

A late stage cancer diagnosis can be entirely devastating but it does not necessarily mean for sure that death is near, in fact many cases are treatable, and patients can live for a long time managing the illness as a chronic disease.2 Your ‘prognosis’ or life expectancy will most likely be anything from years to months. Although some may not have much of a warning and experience a quick decline over merely weeks, a very late diagnosis hardly happens with modern diagnostic techniques and increased public awareness of the signs and symptoms which lead to a cancer diagnosis.3

Late stage cancer? How much time do I have left? No doctor, statistic, healer, spiritual leader, friend or family member can ever know how much time you will have left, or how long anyone else will live for that matter.

Some patients with late stage or advanced cancer live for a long time past what was predicted, and science cannot yet predict who will out-live the prognosis, or necessarily why exactly this is the case.4 Often the patient themselves will know within if they are dying and may choose to openly share their predictions, or not, with those around them.5,6

How long a cancer patient will live with late stage cancer all depends upon a range of individual variables such as; the type of cancer you have, its position in your body, how aggressively it is growing and spreading, how well it responds to treatment, your age and baseline fitness.

What is clear is that now is the time that you need to act and crucially make the right decisions. When faced with a painful diagnosis you need to get on the most appropriate treatment plan as soon as possible.

Straight away it is advisable to enlist the support of someone close who will be there for you through your treatment plan and beyond. Every other responsibility or concern should melt away as you put your health and wellbeing first. Then hope for and expect the best, whilst being prepared and organized in the face of the worst.

When you are forced to become focused upon time by the advancing disease, you can become stuck in the moment, helplessly noticing the time you have left slip through your fingers as the months, weeks and days go by. What to do? What conversations to have? Who to see? When you still want to live and have lots to live for, none of this can ever be enough.

Frustrated with your lack of energy with your vitality dulling, your world and its possibilities narrowing, life becomes more and more about the small things.

Sadly, the time left of life with late stage cancer may not be your own. You will be pulled in many different ways, by for example; medical appointments, home visits by the supportive care teams or charity volunteer home helps and seeing visitors. Although most of these interruptions are welcome, necessary and unavoidable, don’t forget that it is your choice how you spend the time you have left and with whom.

By talking to your partner or caregiver and communicating your wishes as to how you spend your time, who you see and what you do, you can then do what is best for you.

Acknowledging the emotional pain of late stage cancer

The significant psychological burden of a late stage cancer diagnosis can evoke a huge amount of intensely negative emotions.7 Only when you acknowledge the emotional pain and suffering you are experiencing will you be able to adjust to and accept the cards life has dealt you.8

This is not an easy task and perhaps not even required, as many people in your situation may never accept their diagnosis. However, if you can find a way to somehow face your own mortality, you will free yourself from some of the heavy emotions of denial, anger, guilt, blame.

Even with late stage cancer you can have some control over the quality the rest of your life. This is possible if you can avoid or alleviate some of the devastating mental health issues such as depression and anxiety often triggered by this illness.

Emotional distress and late stage cancer

This is not the time to criticize yourself for the way you respond, no guilt should be felt in having any type of reaction. From the extreme, explosive, emotion-fuelled breakdowns, right through to experiencing a quiet, reflective and personal sadness, all are normal and justified human expressions when facing a difficult prognosis.

Through the passage of time which follows, you are likely to experience a combination of anything and everything in-between and you have absolutely every right to be however you want to be in this situation. You may even be shocked by how you react and by even how others around you cope. This is new territory and often pent-up, intense emotions can spill out in surprising ways.

Denial

Denial is the common default position for those newly diagnosed with incurable cancer and is exactly the way most people would respond to any tragic shock.

Under extreme stress, denial is your body’s natural defence mechanism of basic survival, the natural aesthetic for your soul.9 Your mind is on lock-down and denial is a way of limiting and controlling the amount of information you take in. All sense of rational thought disappears, as you consciously or unconsciously10 retreat into the safety of delusion.

Using denial as a coping mechanism is perhaps the easiest way to initially function when you are forced to in the moment. To allow yourself to tell the narrative that the situation is either not happening or is not as bad as it seems is often the path of least resistance.

This re-interpretation of events in order to self-protect is comforting and enables you to cope better in the short-term11 and it allows you to slowly adjust psychologically.12 This positive denial means that you are initially not overwhelmed, gives you a moment of relief and it enables you to breathe.

Denial will overshadow the moment however, if you stay in this altered reality and refuse to see clearly the situation you are in,13 you will be robbed of meaningful quality time with your loved ones, of the opportunity to do the important things that you want to do.

The critical treatment decisions you need to make will also be clouded and patients who remain in a prolonged state of denial typically experience poorer outcomes as appointments are missed and hospitalizations increase.14

By denying yourself the expression of the full range of emotions you are experiencing is to become trapped deep down in a world of pain. Living in a state of denial, actively failing to accept what may very well not be changed can only lead to internal suffering. Becoming trapped in a swirling mindset of yearning, wishing and wanting a different prognosis can only serve to harm you mentally.

Even knowing this you may still feel yourself gripped by an inability to express your true feelings and fears to yourself or even to express them in front of others. This is because many are deprived of their natural expression of despair by the pressure placed on them by their family and friends. Their inner circle will often demand optimism and positivity from the patient in the belief that the cancer will respond according to the emotion they feel.

It is only by releasing this dam of emotion by talking, crying, hugging or even laughing is the healthiest and kindest way to treat yourself whilst dealing with this trauma.

Anger

Why did this happen? Why did it happen to me? Now? Why did the cancer not get caught earlier? Why can’t the treatments cure? Why haven’t they cured cancer by now?

Anger is a completely normal and understandable emotional response as late stage cancer slowly inflicts loss after loss and is a major threat to your life,15 even if you never have had a temper, this is certainly a time which will push you to your limit.

You can find yourself getting angry with cancer, with God, your medical team, your partner or caregiver and even yourself.

Anger is the natural emotional manifestation of the grief you are experiencing. It is an explosive release of your inner pain, the natural release of tension and a way of masking the insecurity and sadness within. When referring to the innate reaction to threat of ‘fight-or-flight’, anger fuels the inner ‘fight’ you feel.16

You have every right to feel anger and any other big emotion you feel right now. There is no room to feel guilty or stressed about how you deal with this. Incurable cancer is unfair, you don’t deserve this, nobody does, especially if it happens to you before you have had a chance to live your fullest life.

Anger can be a negative, destructive, maladaptive force which can alienate you within your family and from your friends when you lash out at those you love. It increases feelings of sadness, loss and leaves you full of regret and with a sense of being out of control.17

Getting angry can be an addictive habit which can be difficult to detach yourself from, even when you know that this is a direct result of your life situation and is not a true reflection of yourself.18

The key is to develop coping skills in order to diffuse the built-up tension in a way that does not eat away at your soul and harm your mental wellbeing and damage your close relationships by saying something you don’t mean under the intense pressure you are under.

By expressing and acknowledging the emotion, you may be able to diffuse the acute and painful pressure felt. With anger, you can learn to recognize your own personal ‘tells’ of the build-up, the sweaty palms, the tension in your body, the sharp intake of air.

When emotions build you can call a helpline, change your focus by going for a walk or a drive, go online group support forum and seek professional medical help from those who can understand.

Personally, in the moment, you can also have intervention strategies already thought of in order to redirect and defuse moments of intense emotion. For example; deep breathing, counting to ten, leaving the room, punching a pillow, screaming into the fridge, remove yourself from others if you need to. Every individual will know what works best for them.

Blame

It is a natural human response to try to rationalize what has happened and why it has happened, to try make sense and find meaning. Desperately you seek to blame any reason from fate to your genetic make-up, in fact anything or anyone for contributing to the reason you developed cancer in the first place.

By way of self-reproach, you may start to blame yourself for your lifestyle or life circumstances as a negative blow to your own health can seem like a personal failure. This is an irrational, unfair way of treating yourself which is sad for others to witness you punishing yourself like this. Getting sick is the reality for the vast majority of humankind who will face the natural order of the lifecycle of birth, life, illness and death. Getting seriously ill in your lifetime is the ultimate side effect of being alive.

The stark reality is that when you become ill it is too late for blame, for prevention or for regret. Cancer can develop for a number of reasons so blaming yourself cannot be an automatic given, neither by yourself or even by others around you.

Most cancers will develop over time and are a result of a combination of factors from genetics, your physical environment and any exposure to unhealthy lifestyle factors over the course of your lifetime, there could even be an element of sheer bad luck.19 Chronic stress leading you to make poor dietary and lifestyle choices, inactivity from working long hours in sedentary jobs, pollution, too much alcohol are all sometimes very difficult to avoid as we live such busy, pressurized modern lifestyles, and you have to remember that no one is perfect.

Even if you did have symptoms which are now so easily recognized with hindsight, or perhaps for whatever reason you didn’t immediately seek medical help, you would not be alone by putting yourself last. Our modern lifestyles of work, family, lack of time and money, coupled with fear and stress leads to putting yourself last being a common flaw.

You should therefore try to detach yourself from the blame, instead of hypothesizing and internalizing the reasons why you developed the disease. The result; much less pointless, negative inner-talk and your self-esteem will be preserved.

By divorcing yourself from the blame it means that you can focus upon the positive and the hope that comes from your treatment plan.

In life you are never stuck in a permanent situation, so to turn this awful situation around you start to look for the light at the end of the tunnel and focus upon your recovery. Or, at the very least, you try to improve your quality of what life you have left.

You are not to blame for this disease, all you can do is seek the best medical care right now and do everything in your power to support your health and wellbeing along the way.

Guilt

In some cultures, and certainly in the past, a stigma or shame was attempted to be placed upon those who got sick, particularly with those suffering from cancer because of the historic mystery surrounding the disease.

The notion that somehow the patient has earnt this, they were to blame for how good a person they have been, or perhaps they weren’t religious enough to be healed and spared is completely ridiculous. Illness is not a reflection of how moral or spiritual you are or have been in life.20

A cancer ‘personality’21 has also been floated before and may even persist in some people’s minds. The idea that they got cancer because they have a certain type of personality is again misguided; you do not have cancer because you have a certain temperament or nature.

The truth is that we all have the potential to develop cancer at any age or stage or in any state ‘health’. In fact, currently 1 in every 6 deaths globally is caused by cancer.22 The specific reasons why an individual will develop cancer depends on many contributing factors which build over time and may never be entirely known.

When you are in the grip of the initial search of understanding it is easy to turn the blame upon yourself as the pangs of guilt are deeply felt. If you have made wrong choices and are racked by guilt, acknowledge your suffering and do something about it so that you can be free of this destructive emotion.

Your focus and energy now have to be on your treatment, your loved ones and most importantly being kind to yourself. At the very least, apologize to yourself in a true act of forgiveness and move on find acceptance and peace without beating yourself up by way of penance.

No matter if you left it too late to initially go to the doctor with your symptoms, if you ate a bad diet, didn’t exercise or could have prevented this from happening in some way, blaming yourself or others is a dangerous game to play. Perhaps your cancer is not responding to treatment and thinking that you have failed somehow to will yourself better, that you weren’t positive or spiritual enough is not helpful, now is not the time to turn on yourself.

Guilt serves no purpose other than to hurt yourself23 and you don’t need to suffer anymore. Cancer is not personal; you did ask for this or deserve to get sick. This illness can happen to anyone at any time, you can be seemingly very healthy and still suffer from this disease. So go easy on yourself.

Treatment decisions of a late stage cancer

When faced with a diagnosis of late stage cancer there can be difficult treatment choices to make. Even if your cancer is classed as ‘incurable’ cancer does not mean that it is not treatable. There may still be a range of treatment options which can extend your life for the foreseeable future.

You may have arrived at this point having journeyed along several different paths. For some, at the point of diagnosis you will have been told that although treatable, there is no cure. Or you could have endured a long, draw-out period of living with late stage cancer or advanced cancer in a state of remission, stable disease or progression.24

When the treatment which is working for you now stops fighting the growing and evolving, increasingly drug-resistance cancer, the goal posts will need to also change. What you are then left fighting and hoping for narrows, becoming less about curing your cancer and more about extending your life and improving the quality of that life you must live with incurable cancer.25

Treatment decisions- late stage cancer

Death of course cannot be avoided, the inevitable for all, but doing everything possible to live for as long as possible is something that you can do and can control.

Like many, you may not be ready to take this lying down. You don’t want to die, in fact, you really want to live and everyone around you wants you to live. There is a heightened expectation of those around you to fight, the pressure can be felt that you need to beat this, if not for yourself, for those you don’t want to leave behind.

The inner will and instinct to fight for more time cannot be underestimated and will be what drives you on to research the treatment options, to get treatment from the best hospitals and to get on the right clinical trials. It is what forces you to take treatment when all you want to do is just run away.26

Fortunately for many late stage cancers there are treatments that will give you significantly more time alive whilst being able to enjoy a good quality of life,27 with advances in the treatment of all types of cancer happening continuously.The reality is already that some metastatic cancers can be put into a dormant state and lived with as a chronic disease.28

To have the strength and determination to be able to pursue the latest treatment available simply must be appreciated; it is immensely challenging to make decisions about treatment, about life and death or in fact anything when staring down the barrel of a gun.

Your medical team will have the unenviable and difficult task of delivering the best advice, treatment and access to the latest advancements whilst also realistically managing expectations and hope.

Ultimately their professional opinion will be to help you to balance out your quality of life, (due to any resulting side effects and symptoms of the disease you will have), as a choice against any extended time alive29 and avoid the continuation of treatment at the expense of your dignity. There can be a psychological, social, and financial price30 to pay for blindly continuing with treatment, which can be impossible for those to accept in the intensity of this moment.

Many patients will be offered treatment right up until the final weeks, in the belief that the patient and their family will be comforted, and their suffering will be eased slightly. A reported 62% of patients will receive chemotherapy treatment within 2 months of dying.31

This is because these days, we are living with a treatment and cure-driven medical system32 set against a backdrop of modern society. We expect that there is something that can be done to attempt to cure every illness at every stage, and many of us are guilty of seeing death more as a medical failure, rather than the natural end to a life lucky to have been lived.33

As a result, death can then come as a surprise for the inner circle who are not medically trained or aware of what to expect from a cancer death and are lulled into a false sense of assurance that something is being done.34

Any benefits of intensive care treatment at the end must be weighed up with the potential distress for the patient and those around them.35 If you choose to opt out of active treatment right up until the end, the associated risks of emergency resuscitation and dying in an intensive care unit can be avoided.36 The final days of life can be better planned for, in the hope that they will be in the supportive surroundings of a hospice or at home, with your mind and body free from the burden of drugs which are, at this stage, of debatable benefit.38

Regardless of your treatment choices, having those horrendously difficult, open and honest conversations with your oncologist are a required step at this time in order to be able to clarify your wishes, motivations, needs and expectations surrounding not only your treatment plan but also your supportive care plan.37

Facing your own mortality

Facing your own mortality- incurable cancer

When those around you start to lose hope and an awkward sadness creeps into everyday life, and you can start to feel locked into a negative trajectory towards an uncertain future.

Facing our own mortality is a surreal and counter-intuitive prospect, one which lots of people have probably spent very little time thinking about when healthy. Any contemplations about what will happen after life will have probably been pushed aside, up until now.

When the time has come, many people are aware that they are approaching death, even if the words are not ever spoken out aloud, or even truly admitted inside. You start to feel alienated from your body, detached from those around you and even start to feel separate from the self you see reflected in the mirror.

Being aware that you are dying and then going as far as acknowledging it, is crucially  important so that opportunities are not lost to be able to carry out your final wishes and say your goodbyes. With the act of turning to face death, it is possible to ease your anxiety surrounding dying.39 By facing your fears, strangely you are more able to be free to live your last days comforted by the peace and acceptance.

Not only will spiritual questions surface when you are facing the great unknown, but also the physical questions of the realities of the dying process will also be of concern, as most adults have no real concept of what the process of dying may even be like.

Confronting the issues surrounding death will make what lies ahead less frightening. You may feel unable to talk about such big, emotive issues with your family and close friends, as it is too painful and surreal.

The psychological distress caused by facing your own death can be significant and navigating your way through intrusive thoughts, anxiety, depression, confusion and fear40 can be too much to bear. This is when the professional counselling teams through your hospital, local charities or even your religious community can help you process what is happening to you.

Living with incurable cancer

How best can you live with incurable cancer? To be told, ‘don’t stop living’ can be a very bitter pill to swallow. Now that it has been said, it is often what people faced with such an uncertain future finally conclude; live when you are alive.

This is not about fulfilling every dream on your ‘bucket list’, in fact, some ideas may never have been possible even when well and having cancer hasn’t changed this reality. Sadly, it isn’t possible for anyone to be able to do everything you have ever wanted to do because to be able to lead a fantasy life you need money, time, freedom and opportunity.

What is possible to make happen right now are the smaller, meaningful and achievable ideas, the things which you should have done a long time ago. It is your task now to think of what will enhance your life and enrich you in a way that pleases your soul.

No one knows how long they will have to live but this is not the time to put important things off, not this time. At the end of life, don’t procrastinate, if there are things thing need to be said or done, seize the day.

When your life feels like it is snowballing out of control, having a plan can help you live well and enjoy your life for longer. Plan to improve the quality of your life left needs to be comprehensive and should prioritize what will make your life better. Having that focus will help you find the ground beneath your feet and discover a sense of security that you crave.

Your wellbeing, happiness and positive activities enjoyed with your important people should come first.

Focus upon what you can do, not what you can’t and, if at all possible, aim to live your life to the fullest for as long as possible.

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