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As part of my MSc in Advanced Practice (Cancer Care), I undertook a qualitative research study looking at the lived experience of people with multiple myeloma (MM) who are affected by reduced physical and psychological functioning.
MM is a clonal B-cell malignancy of plasma cells. People with MM suffer a loss of physical and functional well-being resulting in long-term disability and psychological morbidity.
Treatment for MM involves multiple chemotherapy regimens, radiotherapy, and in some cases, orthopaedic procedures. The patient may experience acute and chronic ill-health, debilitating skeletal damage, impaired mobility and pathological fractures. Treatments may also cause complications such as steroidinduced muscle myopathy, resulting in loss of strength and contributing to a reduction in quality of life. 30% of people survive more than five years, with some up to 20 years.
I recall one distressing case where a 40-year old man presented with a six-week history of back pain. He had previously been fit and athletic. Within two weeks of diagnosis and starting treatment, he suffered a pathological fracture of his sternum and a collapsed vertebral body.
He received chemotherapy and radiotherapy to the sternum as it was too risky for an orthopaedic procedure. He was discharged from hospital after three months and was left with postural kyphosis (curving of the spine) and chest deformity, which had a significant impact on his physical and psychological well-being.
Prior to starting my MSc, I reviewed existing research on living with MM. Some studies focused on issues such as fatigue, pain and physical function during stem cell transplants[2&3] and the physical effects of chemotherapy while people were receiving treatment.[4,5&6]
I found there was a lack of research that explores the lived experiences of people with myeloma in the social context of their daily lives. I found that further research is required to help people with myeloma prepare for the physical effects and adjustments that they need to make in their daily lives.
For my own study, I used hermeneutic phenomenology methodology. Its primary objective is the direct investigation and description of phenomena as experienced in life. Purposive sampling was used to select 11 participants who were in remission.
Semi-structured, face-to-face, tape-recorded interviews were conducted using a topic list to focus questions. The data was transcribed verbatim and procedural analysis was performed. The text was sub-divided into recurring themes and I used descriptive phrases to categorise the themes and express my understanding.
Many practical and psychological difficulties emerged.[4&5] Three predominant themes emerged from the data.
Role - 'I feel usurped a bit' (M)
Independence, control and freedom - 'I don't have any now' (K)
Hopes and dreams - 'Loss of any sort of future really' (R)
Hobbies and leisure activities - 'I can't do them the way I used to do' (B)
Reduced height - 'I can't see into the mirror' (A)
Low endurance - 'I just haven't got the strength' (J)
Altered shape - 'Nothing looks as I feel it should' (M)
Making changes - 'Change in the way one conducts one's life' (G)
Continual body awareness - 'I'm actually frightened now to do anything' (B)
The overall predominant theme was loss of height, strength, stamina, kyphosis of the spine and altered body image, leading to an alteration in the individuals’ self-concept, body image and their way of being in the world.
The man mentioned earlier described how he tried to improve his fitness by swimming but felt embarrassed about his altered appearance, so wore a t-shirt in the water. The pool attendant asked him to remove his t-shirt, so he left feeling unable to return.
Physical and functional well-being are essential components to maintain quality of life. My findings suggest that healthcare professionals support people with the physical and practical effects of treatments, but there is a lack of help in relation to patients’ physical disabilities within the context of their daily lives.
A recommendation from the National Cancer Survivorship Initiative is to encourage people with cancer to increase their physical activity. I believe structured exercise-training programmes should be an integral part of the treatment plan for people with MM to improve muscle strength, cardio respiratory and physical function. This would also reduce the risk of complications such as chest infections and deep vein thrombosis.
Following my research, I tried to set up an exercise class using the cardiac rehabilitation unit at my Trust. Unfortunately, due to staffing issues, I was unable to progress this. Instead I have developed an exercise booklet using some of the basic exercises, which forms part of education sessions with patients.
We have more information about myeloma|. This information is also available in Macmillan’s booklet Understanding myeloma which you can order at Be.Macmillan| or by calling 0800 500 800.
Email Anne Higgins|, Haemato-oncology Clinical Nurse Specialist.
1. Guidelines on the diagnosis and management of multiple myeloma. 2010. British Committee for Standards in haematology| in conjunction with the UK Myeloma Forum (UKMF). (accessed 15 February 2012).
2. Byar K, et al. Quality of life 5 or more years’ post-autologous haematopoietic stemcell transplant|. Cancer Nursing. 2005. 28 (2), pp148–157.
3. Sherman A, et al. Quality of life. Psychosocial adjustment and quality of life among multiple myeloma patients undergoing evaluation for autologous stem cell transplantation|. Bone Marrow Transplantation. 2004. 33 (9), pp 955–962.
4. Coleman E, et al. Facilitating exercise adherence for patients with multiple myeloma. Clinical Journal of Oncology Nursing. 2003. 7 (5), pp 529–543.
5. Coon S. Exercise decisions within the context of multiple myeloma, transplant and fatigue|. Cancer Nursing. 2004. 27 (2), pp108–118.6 Poulos A, Gertz M, Pankratz V and Post-White J. Pain, mood disturbance and quality of life in patients with multiple myeloma. Oncology Nursing Forum. 2001. 28 (7) pp 1163–1171.
7. Van Manen M. Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. 1990. New York, New York Press.
8. Patton M. Qualitative Evaluation and Research Methods. 1990. Newbury Park, Sage.
9. Price B. Cancer: altered body image. Nursing Standard. 1998. 12 (21), pp 49–55.10 Groenveldt L, et al.
10. An exercise Training Programme Produces Significant Improvements in Quality of Life (QoL), Muscle Strength and Cardiorespiratory Function in Patients with Myeloma. Blood (ASH Annual Meeting Abstracts). Nov 2007; 110: 3323.
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