Facing the final stages of cancer

Coping with the entirety of the final stages of cancer

Estimated read-time: 18 minutes

  1. Entering the final stages of cancer
  2. When hope fades
  3. Facing the end of life
  4. Final weeks of cancer
  5. Spirituality for advanced cancer patients
  6. Seize the day, today
  7. Open and honest conversations at the end of life
  8. Final wishes
  9. End of life stages timeline
  10.  Dying with cancer, what to expect?

Entering the final stages of cancer

Coping with your treatment ending will be one of the biggest challenges as you enter into the final stages of cancer.

To walk out of that oncologist’s office having been told that there is ‘sadly nothing more’ that the medical team can do for you is a very surreal moment.

Immediately you experience the sensation of your insides being scooped out, as shock pulses through your body, you feel yourself reeling from what you may or may not have known was coming. On the verge of being sick, you are swept up by many nurses who usher you down the corridor, propping you up whilst almost escorting you away from the many hopefuls waiting for the next appointments.

It feels like you have been on a runaway train and now all help has been outrun, everyone has stopped chasing you.

Exhausted both mentally and physically from the rounds of treatment, side effect control, medication regimens and hospital visits, all whilst hosting endless visitors with whom you have made small talk for months who want to hear the ever-depressing updates of the downward spiral.

You are left to the wilderness of your mind, wondering about all that you will have to face next.

When the treatment regimen comes to an end and you have been referred to the Palliative Care Team, the regular contact with your oncologist will slow down and direct contact by way of a scheduled appointment will become increasingly protracted.

Often the final ‘goodbye’ is avoided, doctors are humans too and their emotions can be caught up when they have gone through so much with a patient.

If possible, a clear, meaningful parting as you enter the final stages of cancer, can give the doctor and the patient an opportunity. Ideally this is the time to express their gratitude to each other and convey a sense of how their relationship has enriched each other’s lives.

Phrases such as, ‘we’ll stay in touch’, ‘my door is always open’ are open-ended and imply the ongoing support your medical team will continue to offer you, in person, by email or by phone.

Staying in contact during the final stages of cancer

The final stages of cancer are a confusing time as deep down you know any contact will be probably be limited. It takes a moment to grasp the reality, there are no more treatments to undergo, no more tests to do, no more scans need to be carried out. You are then left thinking, is that it?!

On reflection, stopping the intense medical appointment schedule can be on the one hand, bizarrely, a huge relief, as if you have been given back the wild freedom of what life was up until diagnosis.

Yet on the other hand, you now know the feeling of what it is like to stand upon the edge of the abyss, finally you see in clear focus what life is all about and exactly how cruel it can be shocks you numb to your core.

The advice that everyone has given you, ‘just take one day at a time’ seems all the more poignant when life expectancy can now be expressed in short-term timescales. How can a throwaway line be so full of meaning and exacting to the point?

When hope fades

When hope turns into disappointment it can be very hard to believe that there is nothing more medicine can do, especially when it is your life that is in threat.

In using sheer denial to shield yourself from the pain, you can become locked into the hope of chasing down the near impossible, submerged in magical thinking and your dogma becomes finding that one escape route that surely exists?

You believe that if you are quick enough, smart enough and fight hard enough, by expending all your resources, there still will be a way out of what mere statistics deem your destiny, or so-called, ‘prognosis’.

Yet, time marches on and there does come a moment as the final stages of cancer loom, when hope fades, whether you like it or not.

The ever increasingly difficult endurance of challenging treatments brings the ultimate decision to weigh up; further life, versus the quality of that life.1 With a sharp, deep inhalation of breath you realise that hope is gone and on that long, numb exhalation of breath you know deep down and internally admit the truth.

Ultimately, the realisation dawns; that there is a certain strength and dignity that can be achieved by going with the natural order instead of struggling against it. Having the strength to admit to yourself that are dying to yourself takes every ounce of courage and quite possibly one of the most difficult efforts faced by humans.2

By acknowledging that the final stages of cancer have arrived, that time is drawing to a close you thereby discover acceptance. This is how you uncover the opportunity to have the last hold over cancer; the opportunity to find peace.

By being able to release the blind hope you held dear, it means that this disease won’t rob you of your final opportunities in life; to grow personally and spiritually, to reconcile your relationships,3 and to able to share your final wishes and medical care preferences at the end of your life.4

Facing the final stages of cancer

The present is all the experience of life that anyone can be sure to have. No matter how old you are, you only experience the ‘now’. This means that appreciating the fact that the end of your life is approaching at any age, does not come easily and does not make dying any easier.

An incurable illness can make time stand still, yet at the same time you see it rapidly slipping away from you. Despair can confuse your thoughts and somehow make the world become incoherent and senseless.

Your mind will try to process it all and difficult questions will surface as you come to terms with the impact that your life has had on the world and the value you brought to life.

The question that burns in the background is, ‘What was the purpose of life, if it was all to end like this?’

Incurable cancer despair

Final weeks of cancer

Being cut free from the treatment process, a strange lull of a false sense of security can set in, especially when all seems stable, any symptoms are managed by medications and your support systems are in place. These months of pre active dying can be surprisingly normal, with the days and weeks passing, you live in a vacuum of day to day normality, yet the dark cloud of uncertainty looms palpably over you.

When faced with death, cancer patients typically react in the same way in which they reacted to any major stress during their lives; quiet people retract, and busy people keep busy.5

In the months, weeks or days before, a person approaching death will try to come to terms with their life and the journey up until this point.

Memories of childhood will come flooding back, major life events and moments that struck you profoundly through life will resurface. The choices and decisions you made for good or bad, all will be re-visited.

The challenges life set you, the luck you had or the suffering you endured will all re-ignite in your present thoughts. Were you happy and fulfilled? Did you try to do the right thing, or are there regrets with hindsight? Did you love and were you loved? What did you gain or lose and what did you learn from living? Are there things left that you should say or do? Are there admissions or secrets you need to share?

By facing up to such questions, you will be able to discover what you are grateful for and acknowledge the sorrow of being cheated out of more life with your loved ones. Could you or would you have lived a different life, under different circumstances? Are you able to forgive yourself, and others? What is your legacy? How will others remember you? And, what is important to you now?

The acknowledgement and acceptance that we have only one life, and that this is the natural cycle of life, can bring ultimate peace to you in the face of death. Everyone will have their day to face their fate and you can find comfort by recognising the meaning and impact your life has had on the world and those around you.

When the time comes near, you might even be ready to die, especially if you have suffered a prolonged illness. In fact, many people facing death have accepted their fate and have come to terms with all the consequences of their advanced disease, finding peace in the appreciation of the life they have lived.

Spirituality during the final stages of cancer

Cancer will call into question your whole belief system. When suffering from cancer many people’s thoughts turn to spiritual beliefs as it forces you to look beyond the everyday and face your own mortality.

There is no right or wrong way to respond and it is never too late to think about these issues. Whether you were religious or spiritual before or not, the comfort that can be found in believing in a higher power can provide you with comfort and meaning in your life right now.

Having that support in your darkest hour can be a powerful tool to help you cope with this major threat to your well-being by easing your suffering.5 Looking outward, beyond yourself for love and reassurance, can bolster your resilience to face any challenge no matter how enduring.

Although the benefits to your mental wellbeing and ultimately to your happiness can be significant, spirituality is an individual response and not everyone will have a faith to rely on for emotional support.

That is when you will turn to your family and friends for support. Those without faith may find many of the positives which spirituality can bring through the appreciation of other aspects of life.

The impact your life has made on the world and the people in your world will give you comfort and enable you to see the purpose of the life you have lived. The love for others you give and receive will bring gratitude and meaning into your heart.

Also, a sense of grounding and connection can be found by walking in nature, art, meditation, music and yoga.

Getting out in nature

Seize the day, today

When all is nearly lost and much is out of your control, there remains perhaps the most important last play you have; the manner in which you die.6 To be able to have a peaceful death, on your own terms, free of conflict or regret is achievable, but you have to act now.

It is never too late to put any wrongs right, to forgive and be forgiven. Don’t let your pride or your denial prevent you from telling those around you whatever you need to tell them; that you love them, you need them, you appreciate them or that you are sorry. There will be peace in doing all the things you want to do and saying all the things you want to say.

Even if ticking off the big dreams of your ‘bucket list’ is now out of your reach, you can still connect with your loved ones in a small but meaningful way.

During the final stages of cancer, you may want to talk to your friends and family on a level which you never have before, sharing; the aspirations you had in life, your inner-most expressions of self, or what you hope for their future. 

The savouring of life can still happen, even from a hospital bed, small experiences in which you can find comfort and joy, which will bring you closure and happiness. For example; beauty can be found in the simple appreciation of company, music, laughter, touch, conversation, humour, love, and compassion.

Don’t let cancer take everything away from you, at least not yet.

Sunset

Open and honest conversations during the final stages of cancer

How difficult it can be to openly talk about what is happening cannot be underestimated. To face your own mortality requires bravery and a surreal sense of the moment. The situation is highly emotionally charged; watching your loved one, or indeed your own reflection, fade away is excruciating and everyone is on high alert.

The thought of having to spell it out and discuss the detail of your own end of life preferences, can feel unbearable and completely beyond your capabilities. Discussing your own death flies in the face of anything you ever wanted to do or imagined having to do and goes completely against the natural will to live.

Despite this, if the patient initiates the opening up of conversation, those around them will more than likely be grateful to have the opportunity to really talk about what matters most. At the time it will be painful, but in time, the fact that you talked freely and ultimately achieved your will can be a source of great comfort for those who you leave behind.

Dubbed ‘the long goodbye’, cancer does afford most with time, however limited it is, to say your final goodbyes.

These conversations during the final stages of cancer may be awkward and certainly not straightforward. Yet it is possible to say everything in so many words.

No matter how these conversations play out, it is important to have them in whatever way possible, pretending that death isn’t happening isn’t helpful for anyone involved. Skirting the issue and never discussing death denies the patient of their final wishes and of the comfort and support they might really need and more importantly want in the face of death, yet they are too scared to say.

Difficult conversations during the final stages

Being able to talk frankly to your doctor and palliative care team can prevent mental and physical suffering and they will help support you through those final weeks and days.

When trying to imagine the unknown, stress can be escalated by your own thoughts. Helplines and support groups can be a great source of comfort for not only the patient but the caregiver by giving sound, credible, on the spot answers to whatever may be running through your head at the time.

The emotional release of being able to talk to someone who understands what you are going through during the final stages of cancer can be hugely touching.

What you will face by opening up and exposing your innermost fears will be uncomfortable, yet at the same time comforting.

Death is not an issue that is openly talked about in our culture due to; fear, religious beliefs or not wanting to distress those closest to you.7 However, being able to talk about the unbelievable inevitable, permits a sense of ease which can be very soothing for the soul under the circumstances.

Final wishes

How you die matters. Where you want to be, who you want with you, how much intervention you want, the symptom control, the spiritual input or lack thereof, there are plenty of variables which you can and should be able to contribute to.

You may have stopped yourself from going there in your head because it is painful and surreal. Now is the time. It will give you the calming reassurance of being able to achieve a peaceful death, the ability to take control and impose your terms on the situation is something that not everyone gets to do.

This most difficult act during the final stages of cancer will also be one of the most amazing gifts you could ever give to your loved ones, your friends and your family.

In grief they will be re-living over and over again every single detail of your final days. Your family and friends will eventually be able to draw strength, gratitude and an enormous amount of peace from knowing that a so-called ‘good death’ was able to be had in the way you wanted.

To acknowledge and take ownership of your own death and become more than a spectator, takes insight and courage. The hope is that your reward will be a dignified death, under your chosen circumstances.

By arranging your affairs, updating your will, letting those close to you know your wishes you will be free from some of the final anxieties and have control over all that is in your power.

Being able to say or write down your wishes is called a ‘Living Will’ and your Palliative Care Team will help you do this if speaking to your family is too difficult. The advantages are that you can clearly set out your preferences for care, interventions, where you want to die, in hospital, a hospice or at home, whom you want by your bedside and perhaps who you don’t want. It does not have to be a formal document and in fact it can be as simple as writing it all down on a scrap of paper and signing it.

Making a ‘Living Will’ during the final stages of cancer is also be the easiest way to avoid any subsequent family dispute and rupture, which can be a very common scenario when emotions are running so high.

You can make your funeral arrangements known, even in vague terms and the location of important documents such as wills can be detailed. Any spiritual beliefs can be resolved, and it is important that not just the medical side of preparations is tended to.

Being able to complete your wishes at the end of your life gives not only you but also your family a tremendous amount of peace.

Final stages of cancer timeline

When dealing with something so unfamiliar, it is difficult to know exactly when active dying starts.

For many of us, death is a detached, abstract concept which we don’t have much experience of. When it comes to witnessing a death, or a terminal decline caused by cancer, can be quite shocking and not exactly how you imagined.

But when does being seriously ill become the start of the dying process?

Dying from cancer

Every experience will be different, but there will be a gradual downward decline into a spiral of setbacks from which recovery becomes increasingly difficult. This pattern of events can occur over months, weeks or even over a few days.

As each day that passes you wait for something to dramatic to happen. Then you realise that it already has happened; you begin to see the subtle changes in your loved one’s vitality, personality and spirit which have by now crept in over time, as cancer slowly takes it all.

How long a cancer patient will last in the final phase is uncertain and the doctors will only be able to assume any time-frames based on their previous experience.

However they do say that if you can see a difference in the person over years, then they have only years to live; if you can see a decline over months, then the prognosis will likely be months; if you can see the descent happen over weeks, then it will most likely be weeks that are left; a difference over days, then the patient will be days from death.

Dying with cancer, what to expect?

As cancer cells grow and spread, they progressively infiltrate major organs, thereby reducing their ability to function. The body’s defence to infection is also reduced as the immune system is gradually overwhelmed and blood counts fall.

Changes in temperature can be expected9 and there may be various episodes of hospitalization for issues such as infection or pneumonia. In the lungs, tumour burden decreases the patient’s capacity to breathe, resulting in experiencing a shortness of breath.

In the bowel tumours constrict the flow of digestion by forming blockages and causing constipation and ulcerations. Patterns of pain can change and become unpredictable, making it difficult side effect to manage. Their abdomen may balloon out with a fluid filled with malignant cells which have seeped from the liver, spleen and lymph nodes.10

A sallow tinge to the skin and a slowness in movements, as the zest for life dulls and the connection to this world fades. Lethargy, frailty, muscle wasting and the inability to eat results in the unavoidable, cumulative weight loss. There may be confusion in thoughts, and this is apparent in any conversations.

Agitation, restlessness and the compulsion to fidget in a repetitive way can present itself. This ‘terminal agitation’ can then be contrasted with an overwhelming sense of calmness, serenity and brief periods of striking lucidity.11

Many cancer patients slip away over a period of time when the differentiation between being alive and having transitioned is almost difficult to distinguish.

The final stages will probably be more traumatising to witness and more than likely the patient will be peaceful and kept comfortable with a continuous cocktail of medications,12 usually morphine and sedatives delivered through a syringe-driver into the bloodstream.13

Although every person will have a different experience, it is common for a slow withdrawal to occur as they retract from emotions, interests, interacting with others, even from eating and drinking. You may notice that they have a faraway gaze, as if already slightly detached from this world.

A deep fatigue sets in14 as energy levels decline and the person with cancer spends an increasing amount of time in bed, increasing the risk of blood clots.

A person’s resilience to even minor difficulties will gradually weaken, and death from cancer will eventually come from contributing factors such as; an infection which cannot be overcome, the ability to eat being taken away or a fall due to frailty.15

The irregular, noisy breathing of the ‘death rattle’ is acutely distressing to witness, but seemingly may not be noticed by the patient themselves.

At the end, slipping into a lethal coma is common and it signals that the organs are slowly shutting down and that the body is ready to die. Most cancer patients will then experience a sudden, acute decline into a peaceful death.

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References

  1. Meropol, N. J. MD et al. (2008) ‘Cancer Patient Preferences for Quality and Length of Life’, Cancer, 113 (12), pp. 3459–3466. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2606934/ (Accessed: 8th October 2019).
  2. Southwick, S. M. & Charney, D. S., 2018. Resilience. 2nd ed. United Kingdom: Cambridge University Press.
  3. Hottensen, D., 2018. Anticipatory Grief in Patients With Cancer. Clinical Journal of Oncology Nursing, [Online]. Volume 14, Issue 1, 106-107. Available at: https://cjon.ons.org/cjon/14/1/anticipatory-grief-patients-cancer [Accessed 21 December 2018].
  4. Black, A., Arnold R., & Tulsky J., 2009. Mastering Communication with Seriously Ill Patients. 1st ed. New York, United States: Cambridge University Press.
  5. Dolan Fullbright, C., 2015. How To Help Your Friend With Cancer. 2nd ed. Atlanta, Georgia, USA: American Cancer Society.
  6. Penson, R. T. et al. (2001) ‘Losing God’, The Oncologist, Vol. 6 (No. 3), pp. 286-297 [Online]. Available at: http://theoncologist.alphamedpress.org/content/6/3/286.full (Accessed: 10th June 2019).
  7. JAMA Oncology- Ellis, MD, L. M. et al. (2015) Losing “Losing the Battle With Cancer”, Available at: https://jamanetwork.com/journals/jamaoncology/fullarticle/2108855 (Accessed: 14th May 2019).
  8. Keeley, M. P., 2017. Family Communication at the End of Life. Behavioral Sciences, [Online]. 7(3), 45. Available at: https://www.mdpi.com/2076-328X/7/3/45 [Accessed 12 December 2018].
  9. Howard, P. & Chady, B. (2012): Cancer & Palliative Care Nursing, 1st edn., United Kingdom: Balliere Tindall
  10. Groopman, M. D., J., 1998. The Measure of Our Days. 2nd ed. United States of America: Penguin Books.
  11. LeShan, Ph.D., L. (1994) Cancer As A Turning Point, 2nd edn., United States of America: A Plume Book.
  12. Lorig, Dr. PH K., Holman, H., MD, Sobel, D., MD, MPH, Laurent, D., MPH, Gonzalez, V. MPH, Minor, M. RPT, PhD (2014) Self-management of Long-term Health Conditions, 1st. edn., United Kingdom: Bull Publishings.
  13. O’Mahony, S., 2017. The Way We Die Now. 1st ed. London, UK: Head of Zeus.
  14. Gawler, I., 2015. You Can Conquer Cancer. 3rd ed. Great Britain: Harper Thorsons.
  15. Gawande, A., 2014. Being Mortal. 2nd ed. United States of America: Metropolitan Books, Henry Holt and Company, LLC.

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