Living with a Brain Tumour Diagnosis
- 1. Living with a brain tumour diagnosis Brain tumour support group January 2015 Sorcha Farrell, BTSG, Jan 2015 1
- 2. Sorcha Farrell, BTSG, Jan 2015 2
- 3. The Journey after Diagnosis Period of significant change for individuals and their families. A diagnosis of a brain tumour can shatter a persons understanding of reality and the world Lead to feelings of uncertainty and insecurity An unknown and unpredictable world People begin to relearn and reconstruct their sense of reality in light of their diagnosis. Sorcha Farrell, BTSG, Jan 2015 3
- 4. Treatment Surgery, radiotherapy and chemotherapy. Fatigue Regular rest periods and light exercise Get help with daily chores- shopping, housework. Healthy diet and lots of fluids can help. Relaxation exercises-deep breathing, yoga, meditation Memory Hair loss- mainly temporary Effects of steroids; increased appetite, irritated stomach lining, changes in sleep patterns. Sorcha Farrell, BTSG, Jan 2015 4
- 5. After treatment Uncertainty Diagnosis Treatment outcomes Fears related to recurrence Anxiety in time leading up to scans Dwindling support system/ others expectations Available time/ Time to think and worry Change in routine Sorcha Farrell, BTSG, Jan 2015 5
- 6. Everyday challenges Changes to physical abilities. Work Restrictions on former roles and abilities Side effects of treatment Emotional and financial worries Problems navigating the medical system and dealing with many health care professionals and obtaining information. Invisible illness Feelings of loss Sorcha Farrell, BTSG, Jan 2015 6
- 7. The lived experience Different ways of coping with a new reality Interests/hobbies, self care, change work/lifestyle Maintaining a positive view Changed identity; Discovering oneself in this new situation: Stronger Goal setting Returning to previous activities Planning for the future or taking it day-by-day Sorcha Farrell, BTSG, Jan 2015 7
- 8. Memory Short-term memory loss; the loss of everyday information Result of a brain tumour and its treatment Ask people to repeat things, slow down and ask for help when needed. Carry a notepad with you, keep lists and a calendar. When talking to someone, avoid distractions or loud noisy areas. Don’t be afraid to say to someone that you have difficulty remembering things. Sorcha Farrell, BTSG, Jan 2015 8
- 9. Ways that people cope Can involve adapting to the changes Giving and seeking information Try to make sense/ find meaning Faith/ spirituality/inner strength Living in the present/ focusing on the future Self care: take it easy and lower former demands Sorcha Farrell, BTSG, Jan 2015 9
- 10. Ways that people cope Support groups At times it may be necessary to take a determined approach and ‘get through it’. Whereas at other times it may be helpful to be patient and kind with yourself. People often feel forced to be positive No one can be positive all the time, it is natural to feel low or upset at times. Accepting this is part of being positive Sorcha Farrell, BTSG, Jan 2015 10
- 11. Ways that people cope Interests/hobbies, self care, change work/lifestyle Changed identity; Discovering oneself in this new situation: Stronger Goal setting Returning to previous activities Planning for the future or taking it day-by-day Sorcha Farrell, BTSG, Jan 2015 11
- 12. Supports and Resources Radiation Therapist Support groups and support centres Social Worker Clinical Nurse Specialist Physiotherapy Community Welfare Officer Public Health Nurse GP Sorcha Farrell, BTSG, Jan 2015 12