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Living with a Brain Tumour Diagnosis

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A presentation by Sorcha Farrell, given to the Irish Brain Tumour Support Groups

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Living with a Brain Tumour Diagnosis

  1. 1. Living with a brain tumour diagnosis Brain tumour support group January 2015 Sorcha Farrell, BTSG, Jan 2015 1
  2. 2. Sorcha Farrell, BTSG, Jan 2015 2
  3. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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

A presentation by Sorcha Farrell, given to the Irish Brain Tumour Support Groups

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