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Life after brain tumour can be difficult, but not impossible. Here are some common questions on living with brain tumour and some resources you may need:

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 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
Contact : A P S Krishnan
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.

If a patient needs terminal care outside the home:

Dr. Ernest Borges Memorial Home (With free transport to hospital)
Near Guru Nanak Hospital
Kalanagar Bandra (East)
Mumbai - 400 051
Phone : 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
Phone: 2417 2167

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
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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