a consortium of brain tumour organisations

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					      Cancer 52 – National Cancer Survivorship Initiative (NCSI)
                                   submission from

       a consortium of brain tumour organisations

The fatigue, distress, depression, grief and challenges of day-to-day living which are
often faced by a patient diagnosed with a primary malignant brain tumour can also
be experienced by that patient’s caregiver. Therefore, cancer survivorship becomes
not a one-person journey through the maze of medical, social and economic aspects
of the disease but a journey which includes caregivers (and members of the brain
tumour patient’s family) as well.

Brain tumours – of which there are over 120 different types – combine the worst of
the neurological diseases with the worst of cancer. Depending on the type and
grade and in which part of the brain it is located, a brain tumour can affect cognition,
physical abilities, personality and emotion. Brain tumours afflict people of any age -
from tiny babies to the elderly - with equal ferocity, regardless of background, race or
geographic location. Brain tumours can rob people of their sight, their mobility, their
hearing, their taste, their smell, their speech, their memories, their jobs, their dignity,
their relationships, their driving license (because many brain tumour patients also
suffer seizures) and their personalities.

Brain tumours “not only confer high risk of death and severe disability, but also
threaten to steal what is held so highly as the essence of human life: the mind and
the spirit.” 1

Brain tumours strike at the very core of who a person is.

The causes of brain tumours are largely unknown so there are no prevention
programmes for them nor any realistic screening programmes. There is no known
preventative option by healthy living, diet or exercise.

Every year, 200,000 people worldwide develop a primary malignant brain tumour. 2
Countless others, such as caregivers and family members, are also devastated by
the effects of the brain tumour on their loved ones and themselves.

All of the deficits mentioned above, capture the uniqueness of surviving and living
with a brain tumour, both for the patient and the caregiver.

While the primary focus of medical attention and associated support mechanisms
must of course remain on the brain tumour patient, it is also imperative that any
cancer survivorship initiative must also take into account the caregiver’s needs and
support pathway as well.

In an article on “Caregivers of persons with a brain tumor: a conceptual model”,
Paula Sherwood et al state: “The caregiver of a person with a PMBT [primary
malignant brain tumour] often faces cancer-related issues such as fatigue,
depression and grief, related to a potentially short, terminal trajectory of disease
However, owing to the location of the malignancy, the caregiver of a person with a
PMBT may also be forced to deal with neurological sequelae, such as alterations in
functional status, cognitive status, and the presence of neuropsychiatric symptoms.”

In addition, the authors of the same article state: “Coping with the oncological and
neurological sequelae of a PMBT, then, requires both the functional ability to perform
physical tasks on behalf of the care recipient, as well as the emotional health to
contend with the potential decline and loss of the care recipient, and the neurological
sequelae that are associated with such a decline.” 4

Recent studies indicate that only 18% of patients with primary brain tumours are able
to return to work as a consequence of their disease and ongoing treatment. This
further impacts on the economic fragility of the situation, adding additional stress to
the caregiver who may also have to give up his or her job to care for a brain tumour
patient. 5

We would very much like to see the additional needs of caregivers factored in to the
National Cancer Survivorship Initiative through a programme of support and

Such a structure could include:

    •    A “systems navigator” who can help steer patient, caregiver and family
        through the maze of post-operative care, providing guidance on securing
        benefits where appropriate, providing information on the practical aspects of
        day-to-day living (both for the patient and the caregiver) and also signposting

      to organisations and agencies who might be able to assist or answer
      questions related to the cancer survivorship journey.

  •    More studies and counselling for “anticipatory grief”. This is a concept
      that, unfortunately, has received very little in the way or attention or study.
      Anticipatory grief is a process in which you can experience all the same
      stages of grief – disbelief, anger, depression, sadness, emotional fragility and
      constant crying, guilt and then acceptance – even before the actual passing of
      a loved one. It is a reaction to the shock of a cancer diagnosis and perhaps
      can be described as representing a “mourning period” where both patient and
      caregiver realise that the life they knew is gone (along with the control they
      may have had in their lives) and they will have to adjust to the “new normal” .
      But, just as with grief at the real death of a person, there are coping
      mechanisms and support systems that can be provided to caregivers should
      they experience this devastating reaction.

  •    More education about critical skills for caregivers. This could include
      practical skills such as how to lift a patient properly without doing damage to
      the patient or caregiver; how caregivers can communicate better with doctors;
      how caregivers can be better supported if they are suffering from depression;
      tips for caregivers about maintaining their own health; readily available respite
      care information; support groups for caregivers; etc.

  •    More education for doctors on how to deliver bad news. Frequently both
      the patient and the caregiver-to-be are given the news of a cancer diagnosis
      together at the same time. Many patients and caregivers have told us they
      can remember every word said by the doctor when the diagnosis was
      delivered. We have had reports of totally inappropriate “bad news breaking”
      by doctors when words spoken during that first delivery of the diagnosis have
      literally scarred the attitudes of both patient and caregiver towards
      survivorship and living with cancer.

  •   The development of a “cancer caregivers survivorship model”.
      Caregivers are survivors of a cancer diagnosis too.

We asked some of our contacts who care for or who have previously cared for a
person with a primary malignant brain tumour to send us some of their thoughts on
what it feels like to be a caregiver. We also quote anonymously from an online
support group for brain tumour patients, caregivers and families. The responses of
the caregivers about their own survivorship on the cancer journey are heart-rending
and disturbing as they describe their own experiences and cry out for help and

      A woman whose sister has a malignant brain tumour wrote: “There is a
      constant knot in my stomach and a huge build-up of stress from MRI to MRI.

Caring for someone with a brain tumour feels like you can never take a deep
breath. That is how I felt for the first year or so from diagnosis.”

She added that she was “paralysed with sadness” and “experiencing a
constant roller coaster of emotions”.

A man who cares for his wife who has a malignant brain tumour wrote:
“Words which describe my own survivorship of my wife’s cancer diagnosis
include: anger, depression, helplessness, frustration and uncertainty. Her
inability to drive is a major factor and puts an extra burden on me. There are
financial pressures and there has been a change in our social situation –
some people avoid us and we sometimes feel stigmatised.”

Another woman describes a close friend with a brain tumour to whom she is a
caregiver: “It can be hard to put someone else first all the time – to let
someone go but be there for them still. It’s like standing on the shore
watching [him] out at sea. Sometimes the waves bring him back closer to me
and sometimes the tide takes him away again.”

The mother and caregiver of a brain tumour patient wrote: “For the first 18
months after my son’s diagnosis, I barely survived, neglecting my own health
and mental well-being and experiencing periods of intense depression and
despair. I now know I was suffering from anticipatory grief. But at the time, I
felt I was going mad with the shock and demands of caring for someone with
such a serious illness (with all its devastating consequences) when I had
never had experience of that kind of situation before. Looking back, I think
that had I been better supported as a caregiver, the first year and a half of our
cancer journey could have been much more tolerable. I could also have
provided a much higher level of support and care had I, as the caregiver,
been able to access more information in a timely manner and understand
what my own survivorship needs were, as well as my son’s.”

A young woman said: “As caregivers we sometimes feel that we are on a
treadmill and that we have no choice but to keep pounding away.”

A wife explained her caregiver’s journey: “I too felt terribly cheated and
resentful about how my husband's 5 year illness affected my life. I did not
have to give up a job, but I did have to turn down many opportunities to travel
and take on special projects and things that I would have loved and that would
have advanced my career. We have a teenage daughter who has had to live
under the shadow of this terrible disease for five years. The last few months of
[my husband’s] life were a living hell for me (as well as for him, of course), in
which I was exhausted all the time and couldn't really get out even to see a
movie or something. The last three weeks were unbearable, with medication
and turning him every few hours round the clock, and money flowing out much
faster than it flowed in. He just passed away this Monday, and I am filled with
this swirl of grief, exhaustion, relief, even moments of excitement, thinking
about having a new chance at life. I will miss him terribly, but it was so awful
for so long.”

       A 32-year old caregiver to a brain tumour patient wrote: “Is there an end to
       sacrificing? We have had this brain tumor journey since 2001. Today I
       find…that I have sacrificed all my dreams, my life and everything and I am at
       a total loss… I had started my MBA degree program and had to let that go
       because I had to take care of my husband. I had to visit my mother who was
       undergoing a breast cancer surgery, wasn't able to do that because of my
       husband's health. I had to kill my dream of going on any vacation due to his
       health. Had to kill my dreams of raising a family. Had to let go of my youth and
       my precious time without expecting anything from a partner. Had to sell our
       home for this stupid BT...Is there an end to this?”

       This is from a man who was caregiver to his wife on a glioblastoma brain
       tumour journey: “Do not neglect your own physical health. As my wife’s illness
       progressed, she found it difficult to multitask and I became the chief cook and
       bottle washer in the home. I admit that what we ate was what was convenient
       to buy and to cook. If it looked good on the frozen food package then that
       would be our meal. Naturally, ice cream, chocolate, cakes and pastries
       always look good and convenient and how could we deny ourselves some
       ‘comfort food’? I later paid the price with the emergence of type II diabetes,
       brought about, so my doctor said, by poor diet while being a carer, lack of
       exercise and stress.”

And finally, in an effort to help and support another brain tumour caregiver, a woman
(whose husband was taken into hospice), gives some words of advice:

       “My health was in jeopardy (heart problems)… It was the stress of taking care
       of a brain tumor patient for all those years that was causing tachycardia… I
       am just saying: take care of yourself first so that you can then take care of
       others! My husband was given 3 years to live. He is here 24 years later which
       is wonderful. But don't live like they are going to die. Live like they are going to
       live. That was my mistake for many years.”

It is clear from these quotes, this anecdotal “grey literature”, that the role of caregiver
reflects in many ways the cancer survivorship journey of the patient.

We would strongly urge any survivorship initiative to address the challenges
not only faced by the cancer patient but the caregiver as well.

“Surviving as a caregiver to a brain tumour patient brings many profound
challenges,” said one woman. “To be the very best caregiver I can be to someone
who I love so deeply means that I have to have the resources and strength to carry
on no matter what. This is a journey that none of us, in our worst nightmares, ever
expected to take. Surviving it needs a huge amount of support and care – for both
the patient and the caregiver.”


Submitted to Cancer 52 on Monday, 22 June, 2009 for the C52 - National
Cancer Survivorship Initiative (NCSI) Report

Written by:

International Brain Tumour Alliance (IBTA)
PO Box 244, Tadworth, Surrey, Tel: 01737 813872,
Email: kathy@theibita.org, Web: www.theibta.org

And supported by:

Meningioma UK
21 Plough Lane, Sudbury, Suffolk CO10 2AU, Tel: 01787 374 084,
Email: support-enquiries@meningiomauk.org, Web: www.meningiomauk.org

Samantha Dickson Brain Tumour Trust (SDBTT)
Saddlers House, 100 Reading Road, Yateley, Hampshire GU46 7RX, Tel: 0845 130 9733
Email: enquiries@sdbtt.co.uk, Web: www.braintumourtrust.co.uk


1. Khalili, Yasmin. Ongoing transitions: the impact of a malignant brain tumour on
patient and family, AXON, Volume 28, Issue 3, Spring 2007, page 5

2. Estimates supplied by the Central Brain Tumor Registry of the United States
based on GLOBOCAN 2002

3. Sherwood, Paula; Given, Barbara; Given, Charles; Schiffman, Rachel; Murman,
Daniel; Lovely, Mary, Caregivers of persons with a brain tumour: a conceptual
model, Nursing Inquiry 2004, 11(1): 43-53

4. Ibid

5. Kalili, op cit, page 5

                                                                 Ref: C52 NCSI Caregivers FINVER 22June09 1805