By Kate Brennan & Jodie Nixon, Occupational Therapy, Princess Alexandra Hospital, Queensland.
Patricia was exhausted. Her chemotherapy protocol had left her tired, her hands and feet were cold & numb and only wisps of hair remained on her head. As she sat and surveyed her daughter’s living room she wondered “Was it all worth it?”
Patricia is 68 years old and until 7 months ago was living in and managing her own home. Patricia loved the outdoors and each week took her grandchild to a different park to discover new playgrounds and environments. She was a member of the local tennis club and played every Tuesday. Patricia and her late husband had played mixed doubles here every week up until the day he died suddenly 2 years ago. Patricia liked that the club members still remembered him and even named a court in his honour.
Seven months ago Patricia’s world changed again. She had felt fatigued for a couple of weeks. When it just wouldn’t resolve she saw her GP. Test results indicated leukaemia and she was referred to a haematologist at her closest hospital where the diagnosis was confirmed, Patricia had acute myeloid leukaemia. The following six months were a blur of decisions, tests, chemotherapy, more tests, more decisions, hospital admissions and a reluctant move to live with her daughter’s family.
Patricia’s daughter, Rachel, had been amazing in her care and compassion. Rachel took care of everything, all of Patricia’s meals were organised, chores were delegated and transport to appointments was meticulously planned. All Patricia had to do was recover.
“Was it all worth it?” Patricia felt guilty for feeling this way. She had an incredibly supportive family who just wanted her to get well again. Patricia had been amazed at the knowledge, skill and commitment of her haematology team and she had no hesitation in trusting their advice for her treatment. They are the reason Patricia was sitting in her chair that day able to wonder “Was it all worth it?” as without treatment Patricia would have died. “I don’t want to die…” thought Patricia “but I don’t quite feel alive either”.
A routine follow up appointment the next week brought Patricia in contact with one of the nurses in the haematology clinic. The nurse observed Patricia looked particularly tired and even a bit sad that day. The nurse offered Patricia a referral to the occupational therapist. “Why not?” thought Patricia, she had a long wait for an afternoon appointment and figured it couldn’t hurt.
“Occupational Therapy is a client-centred health profession concerned with promoting health and well being through occupation. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life” (WFOT 2012, www.wfot.org). Occupational Therapists are health professionals perfectly placed to assist oncology and haematology teams to optimise the wellbeing of their patients during active treatment and following the completion of active interventions. Assessments are undertaken through the use of models of practice incorporating physical, cognitive and psychosocial elements of patient care. Interventions are designed through identification of problems and goal setting with the patient.
That day Patricia met the occupational therapist. Julie was an occupational therapist (OT) working between the inpatient oncology/haematology ward and the outpatient clinic at the hospital Patricia attended. Julie’s role as the OT could range from teaching relaxation techniques to an anxious patient, assessing the functional impact of a person newly diagnosed with brain metastases by looking at their ability to prepare a simple meal for themselves, or organising equipment needs for a terminally ill person who wished to return to their home for their final days.
Julie asked Patricia a range of questions that day to investigate what Patricia’s life was like before her diagnosis compared to what she was able to do for herself now. Patricia told of how she just didn’t have the energy to do simple things, like taking her granddaughter to the park. Then Julie said something profound that put in words what Patricia had been feeling. “It sounds like your life puzzle has been broken up into pieces and they aren’t fitting together anymore,” Julie said.
The activities that had given Patricia meaning and purpose had been taken away from her by the cancer, her cancer treatment and her ongoing fatigue. Patricia felt tears welling in her eyes and Julie passed her a box of tissues. They weren’t exactly tears of sadness but tears of relief for Patricia as she felt heard and understood. While the treatment had taken its toll, Patricia felt grateful to the haematology team for saving her life and for her family for supporting her through the treatment.
The National Comprehensive Cancer Network (2015) describes cancer related fatigue as “a distressing, persistent subjective sense of physical, emotional and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning”. Literature indicates that as many as 70 – 100% of patients being treated for cancer are affected by cancer related fatigue (Ahlberg. K, et al, 2003).
Julie talked to Patricia about activities she finds meaningful and purposeful, cancer related fatigue and about the research showing benefits of light activity for managing mood, fatigue and adjusting to a cancer diagnosis. “Let’s start putting your puzzle back together,” Julie said to Patricia.
Julie and Patricia brainstormed to establish 2 initial goals:
- To spend 10 minutes each day in her daughter’s garden. Some days she might feel well enough to do some light watering other days she may just walk and look at the garden. Spending time in the outdoors was a meaningful activity to Patricia that she used to do with her granddaughter.
- To set the table for dinner each night. Patricia had always felt purposeful when she could help her daughter and this was a small task to start building towards that.
Julie and Patricia agreed to meet the following week at her next follow up appointment.
* * *
The following week everyone was surprised to see Patricia arrive for her appointment wearing a bright yellow turban instead of her beige scarf, she also had a little make up on and had a book with her about local council parks with play equipment.
When Julie met Patricia she told of how those small activities had helped her feel as though she had meaning and purpose in her day. Patricia had also started checking the mailbox each day as another task to help her daughter. Her sleep had improved and even though she was physically doing more she actually felt less fatigued than the previous week.
Patricia and Julie spent the next few months gradually increasing the amount of purposeful and meaningful activity Patricia was doing. Piece by piece they put Patricia’s puzzle back together. A few pieces would always be missing and some had changed shape but it was a puzzle Patricia recognised as her own. “Was it all worth it?” thought Patricia “Absolutely”.
1. Ahlberg. K, Ekman. T, Gaston-Johansson. T, Mock. V. (2003) Assessment and management of cancer-related fatigue in adults. The Lancet, volume 362 Issue 9384 pg. 640 – 650.
2. National Comprehensive Cancer Network (2015) NCCN Clinical Practice Guidelines in Oncology – Cancer Related Fatigue (version 2).
3. World Federation of Occupational Therapists (2011) Definition of Occupational Therapy. Retrieved from: http://www.wfot.org/AboutUs/AboutOccupationalTherapy/DefinitionofOccupationalTherapy.aspx
[hr] Kate Brennan and Jodie Nixon are Occupational Therapists at the Princess Alexandra Hospital, Queensland.