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How
do I live and work after a brain tumour has been detected?
. Physiotherapy
and Occupational Therapy
. Vocational Rehabilitation
. Educational Rehabilitation
. What can I eat?
. Who can I discuss problems with?
. Can I try other forms of treatment?
. What if I'm too ill to reach the hospital?
. How do I manage living and commuting in the city
(Mumbai)?
. Ambulance Services
. Who to contact in an emergency?
. How can I help BTF?
. How will BTF spend my donation?
How
do I live and work after a brain tumour has been detected?
From
the time the tumour is detected to completion of all treatment and return
to normal life, many changes are required of a patient. The illness
can sometimes cause loss of employment, inability to perform routine
tasks, difficulty or loss of movement and speech and the emotional or
social problems caused by these. You can turn to BTF for support in
overcoming the physical or emotional problems you face during or after
the illness. Rehabilitation services such as those described below can
help you long after your medical treatment is over to live a better
life.

Physiotherapy
and Occupational Therapy:
BTF
has specialised and trained physiotherapists and occupational therapists.
They aim at not just life, but "Quality of Life" for patients
and their families. They provide holistic care for the patient, taking
into account the physical, mental, spiritual and psychological aspects
of a patient's recovery.
Therapeutic exercises providing help in re-gaining function independence
are introduced. Aids and adaptive devices are suggested. Environmental
modifications are incorporated to facilitate recovery. For patients
who have to live with a permanent disability, vocational evaluation
and guidance are provided. Liaison with other organisations helps to
cover a wider arena of problems for patients. Therapists help in effective
re-integration of patients within society.

Vocational
Rehabilitation:
The
primary aim of this programme is to identify suitable employment opportunities
for the patient, taking into consideration the patient's background
and functional capabilities. Whenever needed, BTF personnel communicate
with the patient's employers to help the patient adjust to changed circumstances.
Often, there is a need to change occupation and seek new vocations.
The BTF team provides appropriate guidance and assistance to the patient
and his family in achieving this goal.

Educational
Rehabilitation:
BTF strives to ensure that the interruption in formal education due to
the illness, its treatment or various disabilities, is minimal and its
impact on adult life is reduced. BTF helps in educating school authorities
about the student's illness and the reason for his/her irregular attendance.
Besides, BTF offers:
- remedial
teaching for school-going children.
- assistance
in acquiring concessions at school and exams to children with physical
and mental disabilities.
- coordination
with special schools such as those for the blind and for children
with learning disabilities.

What
can I eat?
The
treatment and management of brain tumor may affect nutrition and diet.
You may find it difficult to eat what you normally do, and as a result,
loss of nutrition can worsen your problems. While no special diet is required
in most patients, a good balanced diet will enable you to:
-
tolerate your treatment better
-
improve your body's ability to fight infection and thereby reduce
other problems that may arise during and after treatment
- maintain
your weight at a suitable level or regain lost weight
If
required, meet your hospital or the BTF dietician for advice. The dietician
will, after consultation with you regarding your normal food intake,
plan out a balanced, nutritionally-enriched diet to overcome nutritional
deficiencies you may face. Generally there are no dietary restrictions
for brain tumour patients. It is also advisable to check with your doctor
if you plan to smoke, drink or take any other stimulants or medicines
as this may affect your treatment. Food supplements can be provided
free of cost to needy patients. Please ask your doctor or a BTF volunteer
for more details.

Who
can I discuss my problems with?
The
diagnosis of a brain tumour comes with a host of problems - fear of the
future, readjustments in life, loss of job, change of lifestyle, anxiety
about treatment or commitments, practical coping problems, depression,
a sense of isolation or weariness caused by the disease and the side effects
of the treatment. There may also be concerns regarding treatment, fears
of relapse, coping with pain and a host of questions which you will have.
To help you cope better, discuss these concerns with trained counsellors
at the BTF. They will guide you through options, and search out ways to
ease your problems - whether physical, psychological or social - and help
in equipping you to face the uncertainties of life.
Children with brain tumour have a different set of coping problems and
need sensitive and careful handling. It is essential that all those
concerned and affected seek comfort during this physically demanding
and confusing period. The BTF counsellor can be very useful at this
time.
Financial
Assistance: BTF will assess patients who cannot afford necessary
investigations or treatment and if appropriate, refer them to the hospital
social worker or other support agencies for help.

Can
I try other forms of treatment?
Brain
tumour patients have reported varying degrees of psychological and sometimes
physical relief from alternative or complimentary systems such as Ayurveda,
homeopathy, reiki, accupuncture, meditation and yoga. In our scientific
opinion, these complimentary systems of medicine cannot cure a brain
tumour but we also realise that a lot of our patients do try these.
A
word of caution though: Many of these alternative therapists make tall
claims of "Sure Cure" treatments in order to extort large sums of money
from patients and families desperately looking for hope.
Consult
your doctor or the BTF staff, if you decide to undergo any alternative
therapies. This will help in ensuring that:
- you
are not exploited.
- the
therapy does not conflict with our hospital treatment.
- the
efficacy of the treatment is evaluated by experts.

What
if I'm too ill to reach the hospital?
At
times, the illness can compel you to remain at home. If you are unable
to reach the hospital, you can ask your family member to inform BTF, who
will try to arrange home visits of professionals and volunteers from BTF
and the Palliative Care Team of Tata Hospital to help you.
If
a patient needs terminal care outside the home:
Should
the family find that adequate care cannot be arranged for a terminally
ill patient at home, a hospice that is equipped with medical facilites
can be arranged by BTF. A list of hospices is with the BTF staff and
they can help you arrange one. Here are a couple of such hospices in
Mumbai.
- Shanti
Avendna Ashram
216, Mount Mary Road
Bandra (W)
Mumbai - 400 050
Phone : 642 1889 ; 642 7464
-
Amrita Kripa Sagar
Badlapur
Contact : A P S Krishnan
Deonar
Mumbai 400088
Phone : 5516050

How
do I manage living and commuting in the city (Mumbai)?
The treatment of brain tumour involves a lengthy process, which requires
you to be close to the hospital. This can be a problem if you do not
live, or have relatives, in Mumbai. Often those affected may face difficulties
in movement, especially travelling in buses and trains while commuting
to and from the hospital. Talk to the BTF staff and your hospital social
workers about your problems. They will advise you about special buses
organised by the hospital, and also suggest places you and your family
can stay during the course of your treatment - of course, depending
on your need and affordability.
A list of accommodations, their addresses, name of person to contact,
and charges, if any, are with the BTF staff.
Some
accomodation facilities
-
Dr. Ernest Borges Memorial Home (With free transport to hospital)
Near Guru Nanak Hospital
Kalanagar Bandra (East)
Mumbai 400 051
Telephone : 26441404
- GADGE
MAHARAJ Dharamshala Mission Trust
Dadasaheb Phalke Marg,
Gadge Baba Street
Dadasaheb Phalke Marg,
Dadar (East), Mumbai 400 014
Phone: 24222496, 24134598
- Bharat
Sevashram Sangha (With free transport to hospital)
Vashi Gaon, New Mumbai
Swami Prshantananda
Phone: 27826625
- Ahuja
Dharamshala
Behind Hindmata Cinema
Parel, Mumbai 400 012
-
The Bombay Mother and Child Welfare Trust
Mhaskars Nursing Home
B. D. D. Chawl No 31
Near Delisle Road, Police Station
Mumbai 400 013
Phone: 2411 0561
- Bharat
Seva Sadan Trust
18-A Dadasaheb Phalke
Near Ranjeet Studio
Dadar (East), Mumbai 400 014
Phone: 24110561
- Shri
Kumavat Seva Trust
Sita Niwas Hall
Opp. Railway Ground
Parel, Mumbai 400012
8. Tilak Hospital
50 B. D. D. Chawl
Dr. G. M. Bhosle Marg
Near Jambori Maidan
Worli, Mumbai
Phone: 2493 1930
- Nana
Palkar Samruti Samiti
158, Chamar Baug Cross Street
Off Ambedkar Road
Mumbai
Phone: 2417 2167

Ambulance
Services: (in addition to your hospital ambulance services)
- Cancer
Patients Aid Association
Phone: 2492 4000/ 24928775
- Swati
Ambulance Service
Phone : 2386 9215
- Bombay
City Corp
Phone: 2201 4295

Who
to contact in an emergency?
In case of an emergency you should first contact your treating neurosurgeon/oncologist.
However if you are unable to reach them, you can contact our BTF research
assistant or volunteer who will arrange for you to be attended to, preferably
at the same hospital or, if necessary, at the nearest Centre.
You can contact us by:
- Phone:
(022) 2414 6750 ext. 4153 / 4159
- Fax:
(022) 2414 6937
- E-mail:
btf@braintumourindia.com
- Pagers:
Dial 9602 & ask for 122122
(PAGELINK Pagers & Paging services donated by Microwave communications
Ltd.)

How
can I help BTF?
From
your personal experience of the disease, you can share your thoughts and
give support to other distressed families who are going through similar
experiences. In such support groups you will be able to understand each
other better and will be able to guide us on how to improve our services
to you. In addition, you can help BTF with voluntary work - you can help
us by typing material, mailing material, making phone calls, meeting people
to generate awareness and funds, among other things (click here to find out how you can help).You can also always help us with monetary
donations! By cheque, cash or draft. (Cheques/drafts should be made payable
to the 'Tata Memorial Center" and mailed to us with the donation
form.
How
will BTF spend my donation?
As a voluntary, non-profit foundation, BTF supports its activities through
donations from friends, families of brain tumour patients, charitable
institutions and corporate houses. The funds we collect will be used for
preparing reading material, audio and video cassettes for the patients,
for research into the causes, treatment and rehabilitation of brain tumour
patients, for organising training of volunteers and providing financial
assistance to needy patients, among other things.
The Tata Memorial Hospital has allowed us to use its offices and facilities
to achieve this goal. We are hoping to generate sufficient funds from
individual donors and corporate houses to take this task further. We
call upon your help to make this venture a success by donating to this
cause.


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