A presentation by Bernadette Connolly, Medical Social Worker

1. Life after Treatment for Brain
Tumour Patients
Bernadette Connolly
Medical Social Worker

2. The Cancer Journey…
The cancer journey is a period of significant
change for patients and their families
Patients often find that the uncertain period
after treatment is completed can be the most
challenging part of the cancer journey
As such, it is important for patients to bear
this in mind and draw on as much support as
possible during this period

3. Reasons why life after
treatment is challenging
Availabillity of time
Change in Routine
Changes in Support networks
Uncertainty about treatment outcomes
Others expectations

4. Patient’s Experiences of Life
After Treatment
‘While I was having treatment, I quit doing almost everything. So when
treatment ended, the challenge for me was, what am I going to do now with
my life? What should i
go back to doing?’
"I thought when I'd finished treatment--when they
looked at my tests and they said it looked good
thought, OK, I'm done. But now I'm starting to
realize that it's not over."
"Because the doctors and nurses never told me what to expect, I had very
unrealistic expectations of wellness, and so did my family and friends. This
led to a great deal of worry."

5. Common Feelings
Anxiety
Fear
Frustration
Isolation/ lonliness
Disappointment/ dissatisfaction
Confusion
Relief

6. Time & Routine
Completing treatment may mean that you have a lot
more time on your hands. Having such time allows
you to think about, and face up to the thoughts and
fears you may have been avoiding while receiving
treatment.
Patients may find uncertainty/ discomfort in the fact
that their daily routine has changed signficantly.
Changes like this require a period of adjustment.
While patients may not be well enough to carry out
their ‘normal’ activities or return to work, neither do
they have regular treatment to attend

7. Managing Time & Alterations
to Routine
Allow yourself time to adjust to changes
in your routine
Occupy some of your time with things
that you enjoy
Give yourself an opportunity to rest &
recoup

8. Dwindling support networks
While on treatment, patients have
access to the many resources within
the hospital setting
Some may have developed a network
of support within their own patient group
Supportive family members, friends and
neighbours are in some cases not as
available after treatment is completed

9. Reinforcing supports
Be aware that some resources within the hospital are
still available after treatment has finished (e.g.
support groups, complementary therapy, activity
centre etc.)
Identify supportive individuals within the family/ group
of friends, make them aware that you continue to
value their support even after treatment is complete
Ask your social worker about the community/
environmental supports available to you in your
locality

10. Uncertainity
While treatment is active, patients sometimes
feel reassured that their disease is being
monitored
After treatment is completed, patients may
feel uncertainty about the possiblity that it
may have spread, or that it may recur.
This can be further exacerbated by
unexplained symptoms, or side-effects of
treatment.

11. Managing Uncertainty
Make a list of questions to ask your medical team
before you complete treatment regarding:
• Side –Effects
• Follow-up appointments
• Further Treatment
• Any other outstanding issues
Get contact details for those involved in your care
(such as your CNS or members of the medical team)

12. Expectations
When treatment is complete, those close to
you may have varied expectations relating to
your treamtment and prognosis
Some may expect you to feel better instantly,
and return to normal routines
Many feel under pressure to remain positive
at all times

13. Managing Expectations
Identify supportive individuals within the family group/ network of
friends
When treatment has finished you may chose to sit down with
some close family members (and the medical team if
necessary) to discuss how treatment has gone, what the
implications and side-effects may be, and in which ways they
can provide support to you in the coming months.
Be realistic, and explain the need to pace yourself
Do not feel under pressure to remain positive at all times. It is
normal for patients to feel anxious, worried and frustrated while
waiting to see if treatment has been effective

14. Your Needs
Supportive Individuals
Appropriate Services
Relevant Information & some opportunities to
ask medical questions
Realistic reassurance
Understanding friends and work colleagues
Sensitivity
Rest!

15. Accessing Community &
Environmental Resources
Referral to Social Work re: supports for
discharge (e.g. PHN, HCT, OT etc.)
Support Groups (Gary Kelly Centre, Arc
House, St. Luke’s)
Support Centres (ARC House, LARCC, Gary
Kelly, Bray Cancer Support)
Local Counselling/ Psychology services
(request a referral)
Religioius/ Spiritual Groups

16. Questions ?