Living life with cancer

The ‘new normal’ of life with cancer is a difficult, but important, adjustment to accept.

Estimated read-time: 9 minutes

  1. Life is paused with cancer
  2. Adapting and adjusting to life after a cancer diagnosis
  3. Coping with appointment schedules
  4. Staying on top of the medication protocol
  5. Wellness

Life with cancer is paused

Cancer doesn’t care about arriving at a ‘good’ time in your life and poor timing is one of the many cruel facets of this disease. A diagnosis can feel like a surprise attack as cancer often remains hidden, symptom-free and painless within the body long before you realize the threat.

A tumour will grow unheeded until the point that it is discovered accidently from an unrelated investigation, a screening test, a routine health check shows it up or symptoms occur. The lack of warning and apparent suddenness of becoming ill can be shocking as cancer often appears in your life at a spectacularly inopportune moment, when you least expect it.

You may have; just moved to a new house, be going for a promotion, just had a baby, have a big holiday planned or are looking forward to your retirement, you may even have been happy.

Your life suddenly pauses as your world contracts, dramatically slows downand takes on a whole new meaning. Everything seems to become suspended in time1; work stops making way for treatment, your social life is reduced to hosting visitors and having crisis talks, your hobbies and any free time you ever had seem to disappear completely as your entire focus turns to your health and wellbeing.

lake

It can be a humbling experience to have the ground beneath your feet crumble leaving you unsteady and uncertain of the future, left in the grip of survival mode.

Feeling detached from the situation, you become a voyeur of your own life imploding. You helplessly watch yourself become a different person, not only can the cancer and its treatment bring devastating changes your physical, outer appearance, but it can also have the potential to leave your outlook, personality, approach and thoughts about life changedperhaps for the rest of your life.3

People around you change the way they treat you, from a concerned and pained expression on their faces to an over-enthusiastic, brisk, up-beat enquiry of the latest treatment update.

More frequent visits, texts and calls allow you to know that you are supported which is amazing, yet serve as a constant reminder of the choke hold you are in.

Multiple adjustments are required to be able to deal with all the challenges cancer brings. You will have to cope; physically with the changes the disease and its treatment bring, mentally you will have ride an emotional rollercoaster, socially your roles and relationships will be transformed, and financially any stability will be rocked.4

Adapting and adjusting to life with cancer

Living with cancer requires a fully rounded adjustment from your mind, body and soul as the trajectory of your life takes a new direction. Your psyche will have to play catch up and come to terms with the vast and bleak road ahead.

Firstly, you will have to adjust to becoming a patient and in accepting this redefinition of self you also have to accept; dependency upon others, a loss of personal control, limits set on how you lead your life and a sense of detachment and isolation.5

Such dramatic change in your life will provoke strong emotional reactions of loss, grief, regret,6 panic and fear which can be a challenge to anyone’s mental resilience.7

Adjusting to all this is a process, defined by how an individual over time will cope with, adapt to and learn from the threat to life and changes to life cancer imposes.8 How successful a person is at adjusting to illness depends upon their attitudes and actions they adopt in the face of adversity.9

Depending upon your diagnosis and prognosis, the greater the threat, the harder it is to adjust to life with cancer in a healing way.10

Positive coping strategies of patients who live well with cancer take are;

Adapting and adjusting to life with cancer well is important because if you don’t, your quality of life will suffer, and as a result mental health and behaviour problems can develop. For some, this leads to a reduced ability to stick to medication and therapy protocols which can lead to poorer outcomes.11

Coping with appointment schedules

A cancer patient’s treatment protocol can be very overwhelming. Seeing your diary fill up with various medical appointments from bloodwork and oncologist consultant appointments, to scans and multiple rounds of chemotherapy can be extremely daunting.

It can feel like you have a new job and even if you do have time off work, you may feel like you are busier than ever. Sticking to all that is required of you is an active, conscious choice which you make and one which will give you the best possible chances of recovering and managing side effects.12

These appointments may be in various locations and these different medical centres could be either local or a few hours drive away, which can add to the stress and compound the exhaustion felt. The logistics of how to get there, who will travel with you, if you are not fit to travel there yourself and which supporter has the time to wait the long hours some regimens demand, all need consideration.

Many charities offer support by providing drivers who have often gone through a similar experience and could prove to be a very practical service for you to access. Also, call in the support of your wider family and friends to ease the burden and at the same time, they get to spend quality time with you.

Staying on top of the medication protocol

It is easy to become overwhelmed by the amount of medications you have to take with cancer, especially if you have been relatively well up until this point in your life and have never had to worry about taking a long list of prescribed drugs.

Pills in a hand

With cancer, there are many different pills and injections you will need to take for a wide range of issues, not only for the cancer treatment but also for side effect control. These medications will be on top of monitoring the possibility of infection by having to regularly monitor the patient’s temperature, and perhaps even learning how to give a daily injection or clean a port or direct line.

These many medical demands can be a source of stress, so getting organized is crucial. Either you, your caregiver or both of you need to sit down and get your head around all elements of this new life that has been thrust upon you.

Obviously if you don’t take your medicine as directed, it is unlikely to produce expected benefits, so it is really important that you stick to the regimen that you have been advised.

Perhaps you are not able to cope with the complicated times and dosages because you are overwhelmed by side effects, or your concentration is clouded by stress, anxiety or depression. Or, maybe you are disheartened by the side effects you are experiencing, the cost of the drugs or even the fact that you have cancer in the first place and develop a resentment or aversion towards the medications. All are common issues which lead to the co-called ‘non-compliance’ of taking medication13 which you need to overcome.

If you are struggling, ask someone who supports you to take the lead, and importantly the pressure off you; a caregiver, friend or charity worker to help you sort out your pills for the coming week.

You should have left hospital knowing what and when to take and have daily check-list that your clinical pharmacist will have helped you to devise. It is easy to get confused and the last thing you want is to unintentionally be not complying to the medication schedule, and not getting the best effects as a consequence, because of a lack of understanding.14

If you need more support or reassurance, your local pharmacist will be there to help you, as they are often the un-sung heroes who you can easily turn to. When you are needing a question answered they can prove to be an invaluable, local resource, there for information, daily contact, advice and support.

Often the pharmacist will know the patient and family from the community and their advice on side effects, drug doses, pill regimes and local support groups can be of vital support. Many pharmacies offer a home delivery service or there are companies online which can offer the same if you are finding accessing the drugs a problem.

Keep a drug diary which outlines the medicine’s name, reason for taking it, storage requirements, dosage and the frequency you should take it.

Write any symptoms and side effects down which you are experiencing along with times and dates, in a diary as this will help you when it comes to clearly explaining how you are feeling at the oncologist appointment. Use a larger weekly or monthly calendar is essential to be able to clearly see the schedule of appointments and medication requirements.

Weekly pill boxes are another useful way of effectively managing what medication you have taken throughout the day, every day. A pill box will also help you spread the medications out over the course of the day, obviously sticking to the prescribed timings, so that you do not have to take too many pills at once, which can be very off-putting.

Correct storage of medications is also crucial, as some drugs need to be kept refrigerated to be able to work effectively. It is also really important that the drugs are stored safely away from children in a lockable pill box. Many of the drugs are toxic and any medication is potentially dangerous so they need to be securely kept.

Wellness

To get through your treatment successfully and come out a stronger person for it, you need to schedule your wellness into your day on a daily basis. Even if that means getting a diary and writing down your concrete plans to ensure that making time for yourself really happens.

Making your health, your wellness and focusing the spotlight on you, is now your top priority, even if you have never put yourself first in life.

How to live well with cancer?

Often if you look inward deep enough and really ask yourself what you need to enhance your wellbeing physically, emotionally and spiritually, you will know what you need.

Whether that may be to take a yoga class, stop work, eat in a way that nourishes your body, practice mindfulness, talk through your concerns with a counsellor, have a regular massage, just do more of what you love and strive for happiness even with cancer.

Having strong reasons to live, for example having young children or life-enhancing relationships with a spouse or even a pet, are protective of health and give the patient purpose and reason to stay alive.

Developing these relationships, spending time with those who you love and who love you in turn, can be so beneficial to your overall wellbeing and will help you through this tough time.

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Recommend to others facing cancer, on support forums, social media, in person or by email. Thank you.

References

  1. Standford Center for Integrative Medicine (2019) Ten Steps toward Emotional Well-Being, Available at: https://med.stanford.edu/survivingcancer/coping-with-cancer/coping-with-cancer.html (Accessed: 22nd March 2019).
  2. Black, A., Arnold R., & Tulsky J., 2009. Mastering Communication with Seriously Ill Patients. 1st ed. New York, United States: Cambridge University Press.
  3. Leeson, N., 2005. Coping With Stress. 1st ed. Great Britain: Virgin Books.
  4. Howard, P. & Chady, B. (2012) Cancer & Palliative Care Nursing, 1st edn., United Kingdom: Balliere Tindall.
  5. Radley, A., 1994. Making Sense of Illness. 1st ed. Great Britain: Sage Publications.
  6. Powell, T., 1997. Free Yourself from Harmful Stress. 1st ed. Great Britain: Dorling Kindersley Book.
  7. Andrykowski, Ph.D. et al., M. A., 2008. Psychological Health in Cancer Survivors. Seminars in Oncology Nursing, [Online]. 24(3), 193–201. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321244/ [Accessed 9 December 2018].
  8. Brennan J. (2001) ‘Adjustment to cancer – coping or personal transition?’, Psychooncology, 10(1), pp. 1-18. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pubmed/11180573 (Accessed: 24th July 2019).
  9. Heins, M.J. et al. (2016) ‘Adherence to cancer treatment guidelines: influence of general and cancer-specific guideline characteristics’, European Journal of Public Health, Volume 27(Issue 4), pp. Pages 616–620 [Online]. Available at: https://doi.org/10.1093/eurpub/ckw234 (Accessed: 24th October 2019).
  10. Moorey & Greer, S., 2002. Cognitive Behaviour Therapy for People with Cancer. 2nd ed. Oxford, United Kingdom: Oxford University Press.
  11. Taghadosi, M. et al. (2017) ‘Psychosocial adjustment to cancer and its associated factors in patients undergoing chemotherapy: A cross-sectional study’, Biomedical Research and Therapy, Vol 4 (No 12), pp. 1853-1866 [Online]. Available at: http://www.bmrat.org/index.php/BMRAT/article/view/392 (Accessed: 24th July 2019).
  12. Hansen, L.A. PharmD, BCOP (2015) Best Practices in Maximizing Adherence to Cancer Therapy, Available at: http://www.jhoponline.com/ton-online-first/3695-ton-3695 (Accessed: 24th October 2019).
  13. 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.
  14. McGavock, H., 2016. How Drugs Work. 4th ed. United States of America: CRC Press.

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