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

1. Living with a brain
tumour diagnosis
Brain tumour support group
January 2015
Sorcha Farrell, BTSG, Jan 2015
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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
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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
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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
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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
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12. Supports and Resources
Radiation Therapist
Support groups and
support centres
Social Worker
Clinical Nurse Specialist
Physiotherapy
Community Welfare
Officer
Public Health Nurse
GP
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