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A Cancer Society Newsletter for people affected by cancer by jianglifang

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									CanTalk
A Cancer Society Newsletter for
people affected by cancer




WINTER 2011
No. 59
CANCER SOCIETY OF NEW ZEALAND                      Te Kāhui Matepukupuku o Aotearoa                                                            CANTALK WINTER 2011




Contents

                                                                                         Editorial
                                                                                         Cancer costs. None of us are strangers
                                                                                         to the ongoing funding battles for the
                                                                                         ever-increasing array of drugs and treatments. Currently
                                                                                         20,000 people are diagnosed each year with cancer
                                                                                         (Ministry of Health, 2008). As people are diagnosed
                                                                                         earlier and our treatments continue to improve, it is
                                                                                         encouraging and hopeful than many will be cured and
                                                                                         others will be survivors for many years. But it is also
                                                                                         intensely worrying how society is going to meet these
                                                                                         escalating costs – not just in terms of treatment but also
                                                                                         the costs of survivorship.

         What is multiple myeloma?                                    2                  What is often not acknowledged in cancer statistics is the
         Novel therapies in multiple myeloma                   2, 3 & 4                  cost to the individual (and their families), both through
         Developments in multiple myeloma                             3                  their treatment and long into survivorship - costs that are
         Understanding your drugs in multiple myeloma                 4                  financial, emotional and physical. In researching for the
         Coping with financial stress                            4&5                     articles on ‘Coping with financial stress’, I found it very
                                                                                         disturbing that there is so little to assist people financially.
         Benefit Rights service                                      5
                                                                                         Many people are not eligible for WINZ subsidies or
         Budget and travel assistance                                 5
                                                                                         benefits, and there are few other avenues that these people
         Take a shoebox and......                                     5                  can tap into. Financial expenses incurred extend well
         ACC and treatment injury                                     6                  beyond that of transportation and include child-care,
         That annoying cough                                          7                  lost wages, overdrafts, food bills, medications, special
         Quit smoking                                                 7                  equipment, to name a few – all of which can impact on
                                                                                         people’s quality of life and in some cases act as a barrier
         Lung cancer resources                                        8
                                                                                         to further good health maintenance.
         Cancer update 2011                                           8

         Team Williams                                                9
                                                                                         It is timely that the theme for our Cancer Update this
         Pink Pilates now embraces all women                        10
                                                                                         year is Survivorship. The Cancer Society has always
         Poem - The diagnosis                                       10
                                                                                         recognized this as a pivotal part of our support. The NZ
         Yoga for breast cancer                                      10                  Cancer Control Strategy (2003) has as one its goals: to
         Book review - The emperor of all maladies                   11                  improve the quality of life for those with cancer, their
         Relay For Life 2011 - another winner                        11                  family and whānau through support, rehabilitation and
         Library Update                                              12
                                                                                         palliative care. We need to ensure that this is taken
                                                                                         seriously, that the Government does more than pay lip-
         Free services available                             Back page
                                                                                         service and that real inroads are made to address these
                                                                                         huge issues.
                                                                                         Sue Corkill, Editor
                                                                                         Contact: Sue Corkill, Cancer Society Wellington Division
                                                                                         52 Riddiford Street, Newtown or email: suec@cancersoc.org.nz regarding any
                                                                                         information in (or contributions) to the CanTalk Newsletter. This CanTalk
                                                                                         newsletter is compiled and edited by the Cancer Society Wellington Division.



Disclaimer
Many of the articles in the publication are sourced from overseas. The inclusion of these items does not imply that procedures, treatments, or tests reported herein are
approved of, or available in NZ. These articles are for discussion purposes only. The views and opinions expressed here are not necessarily those of the Cancer Society of
NZ.


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CANCER SOCIETY OF NEW ZEALAND      Te Kāhui Matepukupuku o Aotearoa                                 CANTALK WINTER 2011




 What is multiple myeloma?
  Multiple Myeloma is a cancer of the plasma cells (mature B-lymphocytes) that usually arises in the bone
  marrow. All blood cells begin in the bone marrow as stem cells. These stem cells turn into red cells, white
  cells and platelets.

  White cells fight infection. They make different types of cells, of which one group is called B-lymphocytes.
  In healthy bone, B-lymphocytes turn into plasma cells which produce substances (antibodies) that fight
  infection and disease.

  If the B-lymphocytes are genetically damaged, they can turn healthy plasma cells into malignant multiple
  myeloma cells that are unable to fight infection. Instead these abnormal cells reproduce and make large
  amounts of protein which crowd out the normal cells in the bone marrow. The bone marrow is prevented
  from making normal numbers of red cells, white cells and platelets, which can lead to anaemia, fatigue
  and infection.The abnormal multiple myeloma plasma cells can attack and weaken the solid part of the
  bone, causing soft spots, or ‘osteolytic lesions’.
  (Adapted from Living with Multiple Myeloma Resource Guide; http://www.canceradvocacy.org/toolbox/multiple-myeloma-
  resource-guide.pdf)



Novel therapies in multiple
myeloma by Dr Ken Romeril
Background

Bortezomib ((Velcade®)) is now available for use in
the treatment of multiple myeloma patients from the
beginning of May 2011 and I propose to outline the
background for this important decision.

Multiple myeloma is an aggressive and incurable
blood cancer characterized by the growth of malignant plasma cells which are normally found in the bone
marrow.

Around 300 new cases of multiple myeloma are diagnosed annually in New Zealand and we see between 30
and 35 new cases annually in Wellington. Survival of patients with multiple myeloma may vary from months to
decades. Multiple myeloma can affect various organs but frequently targets the kidneys, causing renal failure,
and the skeleton, with resulting bone loss and fractures.

In the past ten years, new advances have been gained into the understanding of the biology and molecular
mechanisms leading to the development of multiple myeloma. Studies have shown that the bone marrow
environment has a critical role in the development of this cancer. The interaction of the multiple myeloma cell
(plasma cell) with cells in the bone marrow may trigger loops of cytokines (chemical messengers) that can
activate bone destruction and allow the malignant plasma cells to proliferate.

The identification of these mechanisms has led to new drugs that can target specific pathways involved
in the disease process and block them from occurring. These agents include an immunomodulatory drug,
Thalidomide (thal), the proteosome inhibitor, Bortezomib (Velcade®), and the thal derivative, Lenalidomide
(Revlimid®).
                                                                                                  Continued on page 3


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CANCER SOCIETY OF NEW ZEALAND    Te Kāhui Matepukupuku o Aotearoa                               CANTALK WINTER 2011




Continued from page 2
Bortezomib (Velcade®)                                         Developments in multiple myeloma
                                                              1844    1st recorded case of multiple myeloma
Bortezomib (Velcade®) is derived from boron
and it inhibits the proteasome in the cell leading            1848    Bence Jones protein identified. This
to disruption of many pathways that affect the                        unusual and distinctive protein found in
development of multiple myeloma. (The proteasome                      the urine or serum of patients with
is the name given to a number of enzymes that are                     multiple myeloma was named after
important in breaking down proteins after they have                   Dr Bence-Jones - the noted physician
performed their functions in the regulation of cell                   and chemical pathologist who identified
growth and development.)                                              it.

The drug was initially approved for treatment                 1958    First chemotherapy drug - Melphalan –
of relapsed multiple myeloma in 2003 in the                           found to be effective against treating
USA, based on a survival benefit in the (Summit                       multiple myeloma
and Crest) phase II clinical trials. These trials
incorporated 8 cycles (32 doses) of Bortezomib                1975    The Durie/Salmon staging system
(Velcade®) and Dexamethasone and an extension                         introduced allowing doctors to assess
trial proved that this drug combination could be given                the benefits of treatment at different
safely for as long as two years.                                      disease stages.

Since these initial trials were published there has           1982    Transplants first used in treating
been a plethora of Bortezomib ((Velcade®)) drug                       myeloma
combinations used in a number of different settings.
They have been widely tested and the drug has                 1984    VAD chemo (vincristine, adriamycin
been found to have a minimal effect on marrow                         and dexamethasone) introduced
function and can be used safely in renal (kidney)
insufficiency. It also does not seem to cause                  1986    High-dose therapy used
thrombosis (leg clots) as seen with Thalidomide and                    with either an autologous bone
Lenalidomide (Revlimid®). The use of Bortezomib                        marrow transplant or stem cell
(Velcade®) combined with older drugs such as                           transplants
Cyclophosphamide and Melphalan can achieve high
complete response rates in both newly diagnosed                1996    Bisphosphomates, e.g. pamidronate or
and relapsed multiple myeloma patients. Bortezomib                     aredia, first used in treating myeloma
(Velcade®) has a synergistic (additive) effect when                    related bone problems.
used with a high-dose potent steroid such as
Dexamethasone.                                                 1999    Thalidomide first used as an
                                                                       anti-myeloma drug
New Zealand Situation
Bortezomib (Velcade®) has been available for                   2003    Velcade®) approved in USA (for people
limited use on compassionate grounds and has been                      who had at least 2 prior therapies)
used in Wellington since around 2008. We have
found it to be highly effective. Following extensive           2007    Revlimid® (Lenalenomide) approved.
lobbying and negotiation, Pharmac has finally
agreed to fund Bortezomib (Velcade®) from 1st May              2008 Thalidomide approved for use in newly
2011 for use in de novo (newly diagnosed) multiple                  diagnosed patients in combination with
myeloma patients and for the treatment of relapsed/                 melphalan and prednisone. Velcade®) in
refractory multiple myeloma for patients who have                   NZ
only had one line of therapy. This is wonderful news           2011 Velcade®) funded in NZ from 1st May
and means the possibility of an extended lifespan              (Adapted from http: mnlp.myeloma-academy.org)
                                Continued on page 4


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CANCER SOCIETY OF NEW ZEALAND     Te Kāhui Matepukupuku o Aotearoa                                CANTALK WINTER 2011




Continued from page 3
                                                               Coping with financial stress
and better quality of life for many multiple myeloma
patients. In the Wellington Haematology Unit we                                        When a person is
are planning to use Cy/Bor/D (Cyclophosphamide,                                        diagnosed with cancer
Bortezomib (Velcade®), and Dexamethasone) in                                           life is suddenly filled with
the upfront situation in some relapsed patients.                                       uncertainty. There can
Trials have shown that by using a weekly, short (five                                  be far more questions
minute) infusion dose, we can reduce clinic visits                                     than there are immediate
and decrease significantly the risk of neuropathic                                     answers, and the journey
damage to the feet which results in painful tingling or                                ahead is more a maze
numb sensations. Patients under 65 years will end                                      than a mapped route.
up having about 16 weekly injections prior to their                                      While your health takes
auto transplant if this is deemed clinically suitable. It                                the centre spotlight, often
is also likely that they will have additional Bortezomib        it is all the peripheral bits behind the stage
(Velcade®) therapy post-transplant to consolidate               curtains that echo the loudest inside your head.
the response. Transplant ineligible patients (those             Financial concerns can go hand in hand with
over 65 years) will be offered the triplet combination          a cancer diagnosis, and for many patients it’s
of VMP (Bortezomib (Velcade®), Melphalan and                    those practical issues that pose many of the
Prednisone) for around eight cycles of therapy.                 biggest worries.
Conclusion                                                      Accessing ‘specialists’ that can help cure your
In summary the funding of Bortezomib (Velcade®)                 concerns is often a lot easier than you might
should lead to a new era in the management of                   think and, if consulted early, will almost certainly
this challenging combination. We have had the                   quiet at least some of the voices that keep you
opportunity to use this drug and study its side-effect          awake at night.
profile over the last few years and hope that we can
deliver this drug to our patients with good effect.             A great place to start is the Work & Income
Ken Romeril                                                     New Zealand (WINZ) website: http://www.
Consultant Haematologist, CCDHB                                 workandincome.govt.nz/. There is a lot of
                                                                easily decipherable, common sense information
                                                                available online. If there is anything that you
  Understanding your drugs in                                   need further clarification on, a “submit your
                                                                enquiry online” tool allows you to request
  multiple myeloma                                              specific answers via your email.
  The International Myeloma Foundation offers
                                                                If you prefer the personal approach, an 0800
  The Understanding Series - 14 booklets on
                                                                number is all you need to connect you to an
  understanding about each chemotherapy drug used
                                                                expert who can help navigate your access to
  in myeloma therapy.
                                                                financial and practical assistance. Call 0800
                                                                559 009 or, if you are over 65 years old, call
  The myeloma manager                                           0800 552 002. If you feel you are just not in the
  Another useful tool created by the International              right “head space” to conquer your access to
  Myeloma Foundation. The Myeloma Manager™                      allowances yourself, you could ask someone to
  is a program that you download and run on your                go through it with you or seek advice from your
  computer providing you run Windows XP or Vista. It            local Cancer Society office or from your DHB
  enables you to store laboratory results and display           Social Worker. However, they will also need to
  and print tables to show how those results change             see your receipts and documentation.
  over time.
  These resources can be found and downloaded at:               Assistance through WINZ is most often means-
  www.myeloma.org and click on Living with Myeloma or           tested. However, don’t be put off. Just because
  contact us at the Cancer Society -                            a benefit is means-tested doesn’t mean you are
  0800 CANCER (226 237)                                                                          Continued on page 5

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CANCER SOCIETY OF NEW ZEALAND           Te Kāhui Matepukupuku o Aotearoa                                  CANTALK WINTER 2011




    Continued from page 4

    not eligible if you or your partner earn a salary.                Benefit Rights service
    The entitlements use a stepped approach,
    and there is a wide range of criteria allowing                    The Benefit Rights Service offers a free service
    for minimum to maximum assistance options.                        helping those who are applying for assistance
    The website is an excellent way to test your                      from WINZ.
    entitlement eligibility.
                                                                      Some of their advice:
    WINZ recognises that illnesses such as a cancer                   • When you ring the 0800 WINZ number
    journey are usually subject to change, and as such                   always make a note of who you talked to,
    it keeps its allowances flexible. At any stage, a                    the date and time.
    beneficiary’s situation may be reassessed and the                 • It is your right to be seen by your case
    severity of the patient’s need can be reviewed.                      manager. Insist on an appointment.
                                                                      • If you find your case manager is being
    A helpful resource is the Cancer Society Benefits                    unhelpful, it is often a good idea to ask to
    and Entitlements Information Sheet - http://                         see the service manager or ‘whoever is in
    cancernz.org.nz/information/living-with-cancer).                     charge’.
                                                                      • Keep date stamped copies of everything you
    Anna Cardno                                                          send and record all contacts.
    Manager, Cancer Society Wairarapa                                 • Whether or not your case manager says
    (Photo from Ministry of Health booklet -Coping with                  ‘you are not entitled’ – always ensure you fill
    Financial Stress)                                                    out an application form.
                                                                      Phone: 04 385 8596; email: brs@wpc.net.nz
                                                                      http://wellingtonpeoplescentre.org.nz/iWPC/wpcclient/
                                                                      brights.jsp



                                                                      Take a shoebox and.....
                                                                      Collect all receipts to do with:
                                                                      • Travel - include
                                                                          petrol, parking,
                                                                          bus and train
                                                                          fares
                                                                      • Medicine -
Budget & travel assistance                                                include GP visits,
                                                                          pharmacy cost,
Budgetary advice can be found at:
                                                                          and sundry items
                                                                          such as pads or
Citizens Advice Bureau - 0800 367 222
                                                                          dressings from supermarket
Sorted - an independent money guide           -
                                                                      • Food - especially special food items required
www.sorted.org.nz
                                                                      • Electricity bills - especially if extra heating
Budgeting Services - 0508 283 438 or www.
                                                                          required
familybudgeting.org.nz for help in managing money.
                                                                      • Accommodation costs - rent, board, etc
Travel assistance:
                                                                      This can really help sort out what assistance you
                                                                      may be eligible for. A checklist from WINZ - http://
The Ministry of Health National Travel Assistance
                                                                      www.workandincome.govt.nz/individuals/what-to-
Scheme is available to those who have to travel long
                                                                      bring-to-your-first-meeting.html is very helpful.
distances for treatment. 0800 282 222 or
http://www.moh.govt.nz/moh.nsf/pagesmh/3702                           Carmen Gordichuk, Oncology Social Worker
                                                                      CCDHB



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CANCER SOCIETY OF NEW ZEALAND    Te Kāhui Matepukupuku o Aotearoa                                CANTALK WINTER 2011




ACC and treatment injury                                                                  (such as your GP) can
                                                                                          complete the necessary
ACC offers a unique, no-fault approach to
                                                                                          ACC forms with you.
compensation for injuries arising from adverse
events in healthcare (treatment injury).                                                    We can’t provide any
A treatment injury is a physical injury that occurs                                         help until a claim
when a patient is seeking or receiving treatment from                                       is accepted, so it’s
a registered health professional.                                                           important to lodge a
                                                                                            claim for treatment injury
ACC can’t cover all events where treatment doesn’t                                          as soon as possible
go well or turn out as expected and may not be able         after the incident. It’s also important you don’t delay
to accept your claim if your injury is:                     receiving necessary treatment while you wait for a
  • related to a health condition you had before            claim cover decision. ACC may be able to refund
      you received treatment:                               some costs if the claim is accepted, so keep all your
  • a necessary part of your treatment, e.g. an             receipts for treatment.
      incision made during surgery
  • an ordinary result of your            But, if you develop            Claims are assessed by ACC clinical
      particular treatment, such as       complications from treatment   advisors from a range of disciplines
      minor damage to tissues as          which were unexpected, then    including nursing, pharmacy and
      part of radiotherapy                ACC may be able to cover       medicine. All relevant clinical notes
  • caused by a decision an               those injuries.                and reports are obtained by ACC
      organisation made when                                             and often expert opinion is sought
      allocating health resources                                        before a decision can be made. This
     (e.g .a decision affecting your place on a             may take a number of months before you will know
     waiting list).                                         whether ACC can accept your claim for cover.
Injuries from cancer treatment                              Assistance for accepted claims
Like all healthcare, treatment for cancer comes with        If your claim is accepted, a range of assistance may
a risk of complications, which your treating health         be available, depending on the specific nature of
professional will discuss with you. Complications           the injury and your circumstances. Help may include
can include injuries to your body, such as damage to        things like:
teeth, skin, internal organs or hearing. As mentioned       • contributions towards treatment costs
above, if these injuries are an ordinary or expected        • weekly compensation for lost income (if there’s
part of treatment in your case, then ACC won’t be                an inability to work because of the injury)
able to cover them.                                         • help at home, with things like housekeeping and
                                                                 childcare.
But, if you develop complications from treatment            If you need some advice on whether you may have
which were unexpected, then ACC may be able to              a treatment injury, you’re welcome to call ACC on
cover those injuries.                                       0800-101-996.
                                                            Dylan Tapp
ACC can also assist if there has been a delay in            Clinical Analyst, ACC
diagnosis of your cancer, leading to tumour spread
and more extensive treatment. This can include
delays caused by issues with support systems such              Insurance & credit card policies
as lost test results or referrals.                            Read that fine print! It pays to always ask a
                                                              professional to check out the wording in your
How to make a claim                                           insurance,mortgage and credit card policies. You
Ideally a claim should be lodged by the health                may be entitled to assistance.
professional who provided the treatment that caused           Be warned! You may find that credit card holiday is
your injury. Alternatively, another health professional       very expensive in the long run; bank policies differ.


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CANCER SOCIETY OF NEW ZEALAND        Te Kāhui Matepukupuku o Aotearoa                                    CANTALK WINTER 2011




That annoying cough                                              future may be. My mind was racing overtime with
                                                                 silly thoughts, especially at night in bed. Was the
It was only because of an annoying cough that I went to          future going to be just the kids and me or would she
see my GP; I’d had it for a couple of months and didn't          pull through? I couldn’t concentrate on work, and I
think that much about it really. However, my doctor              likened my brain to a computer hard drive with the RAM
thought she should send me for a precautionary x-ray             memory full. Whilst Sandra was receiving treatment I
and it was a few days later the phone call came that             was trying to run our business, look after the children,
she would like to see me!                                        housework, shopping, cooking and cleaning, as well as
                                                                 support her’.
I couldn't imagine what for; but soon learnt from her
that the x-ray showed a shadow on my right lung. CT             After finishing treatment, it was then all about getting
scans, blood tests and more x-rays                                       back to normal. Having undergone a right
were scheduled. I had myself dead                                        lobe lobectomy, lung function was limited.
                                         I’m a four and a half year
and buried by Christmas that year!          lung cancer survivor!        Minor exertion left me breathless. Chemo and
                                                                         radiation had taken its toll, leaving me with little
My cancer journey had begun.
                                                                         appetite (nothing tasted right); I tired easily
At the completion of many tests, a tumour was evident           and was probably a little depressed. Sleeping tablets
and surgery planned. I felt sick with fear and what the         help with sleeplessness but I eventually stopped
future held. Life stopped; I couldn't plan anything as I        taking them. Energy levels and appetite returned to
was hovering in the "twilight zone". I experienced every        normal within a year and I have managed to continue
emotion from the upbeat to the lowest of lows. Lung             to work throughout, which has given me something
cancer survival statistics aren't good and gave me little       else to focus on. I still get breathless – hill walking is
hope. I’m not so sure the Internet is always helpful            out; it’s only the flat for me now! But I don’t take any
seeking out information!                                        medication and am pain-free. My reminder of this
                                                                cancer is the 6-monthly check-up.
The Cancer Society put me in touch with a
                                                                I have gone from 3-monthly checks to 6-monthly but
cancer survivor who could offer advice, words of
                                                                still feel nervous as the appointment draws near.
encouragement. It was pretty gutting that no lung
                                                                My cancer journey has been one I never expected to
cancer survivors were available, and my contact ended
                                                                take. I feel so well now and I say thank you to God
up being a lady who had survived breast cancer.
                                                                every day for my survival.
However, she was wonderful and did give me words
                                                                I am a four and a half year lung cancer survivor!
of encouragement, allaying fears of upcoming surgery
                                                                Sandra Hislop
and ensuing chemotherapy. Chemo was a nightmare
journey for me. I was very sick but so determined to
get through it. It wasn’t going to beat me. I continued            Quit smoking
working through my treatment with a supportive
employer.                                                          Fact: 3/4 of lung
                                                                   cancers are caused
I experienced another round of chemo plus radiation                by smoking
some 10 months later after another lump was
discovered in my lung. Here we go again! But this time             Services to help you
it would be just 6 weeks’ treatment. I was an old hand             be smokefree:
at this game! I didn’t take it very seriously, but I soon
did when the radiation treatment prevented me from                   •     Face to Face quitting services - many of
eating and I had to ‘up’ the morphine and other drugs.                    which are tailored for Maori, Pacific and
Once again I lost my hair, which was surprisingly the                     Asian people. Talk to your health
most distressing thing for me.                                            professional or visit www.quitsmoking.org.
Most friends were supportive after getting over their                     nz
shock. Some people stayed away but it wasn’t only me                 •    Free telephone support line: 0800 778 778
who needed support, it was my husband and children.                  •    Text: Sign up for Txt2Quit. Text Quit to 3111
I was afraid for them as much as myself. My husband                  •    Internet: Quit blog www.quit.org.nz
Peter explains: ‘When I found out that Sandra had lung
cancer, I was sick with worry for her and what our

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CANCER SOCIETY OF NEW ZEALAND   Te Kāhui Matepukupuku o Aotearoa                              CANTALK WINTER 2011




 Lung cancer resources
 CD: A Breath of Fresh Air: an interactive guide to
 managing breathlessness in patients with lung
 cancer. The Institute of Cancer Research 2001.

 DVD: Take a Breather; a patient’s guide to coping
 with breathlessness. NHS Trust UK & The Roy
 Castle Lung Cancer Foundation, UK. 2003.
 Useful overview of good breathing techniques,
 practical ideas to help with breathing and
 nutrition.                                                Cancer update 2011
 Living with Cancer-Related Breathlessness: a              There are over 30 million cancer survivors around
 guide for people living with breathlessness. 2nd          the world and this figure continues to grow as the
 edition. Helen Costello. The Cancer Society of            population increases, cancers are detected earlier,
 NZ, Wellington Division Inc 2003.                         and treatment becomes more effective.
 A booklet, audio CD and action plan deliver
 practical strategies to assist with fatigue and           So it seems most appropriate that ‘Survivorship’ is
 breathlessness.                                           the theme of Cancer Update this August. For the
                                                           last ten years Cancer Society Wellington Division
 Lung Cancer Information pack.The Cancer                   has hosted Cancer Update - adopting a cancer
 Society of NZ, Wellington Division Inc 2004.              theme and then offering an exciting number of public
 Free to anyone affected by lung cancer.                   lectures and professional educational opportunities,
 Contains easy to read booklet, useful websites,           with a special international guest speaker and other
 introduction to services at the Cancer Society            highly qualified speakers.
 and practical information sheets.
                                                           This year we look forward to hearing our expert,
 Library Books: We offer a range of helpful books          Professor Bogda Koczwara. Professor Koczwara is
 about lung cancer and lung cancer survivorship.           a medical onocologist in the Department of Medical
                                                           Oncology at the Southern Area Health Service in
                                                           Adelaide, Regional Director of Cancer Services and
                                                           a co-director of the Flinders Centre for Innovation in
 ‘Beyond cancer - living longer, living                    Cancer at Flinders University, Adelaide, Australia.
 better after treatment’ will be                           She is hugely interested in cancer survivorship,
 offered:                                                  supportive care and psycho-oncology.

 Tues 16 August - Blenheim - 6.30pm-8pm,                   She has been instrumental in implementing
       Wishart Room, Marlborough Civic Centre.             survivorship care planning for women with breast
 Wed 17 August - Nelson 12noon - 2pm                       cancer and this programme has been running for
       Surburban Club, Tahunanui Drive, Nelson             almost two years. ‘The issue is not about how we
 Thurs 18 August - Wairarapa - 12.30pm-2pm                 cure cancer, it’s about how we are not so good at
       Boddington Room, Masterton Club, Masterton          providing support afterwards. We need to recognise
 Thurs 18 August - Wellington - 6pm-7.30pm                 that people live free of cancer for a long time’, she
        Spectrum Theatre, cnr Customhouse Quay             says (http://eleanorlimprecht.blogspot.com/2010/10/
        and Johnson St, Wellington.                        after-storm.html).
       (Refreshments 5.30pm)
 For registration or any queries ring your local           For dates, times and venues see attached box on
 Cancer Society or 04 389 8421.                            left.
                                                           Sue Corkill

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CANCER SOCIETY OF NEW ZEALAND      Te Kāhui Matepukupuku o Aotearoa                                      CANTALK WINTER 2011




                                                                Team Williams (from left to right)
    Team Williams                                               Karyn, Andrew, Karen, Phil, Kathryn Williams, Peter, Alison,
                                                                Wayne & Meredith
                                                                Photo credit: Paula Tanuvasa
    In August 2008 I was diagnosed with stage 4
    incurable metastatic melanoma.                            and views across their respective institutions.
    I was given 9-12 months to live.                          The formation of ‘Team Williams’ was natural
    I was 38 years old.                                       and progressive. I applied the same principles
    With the discovery of another tumour in mid 2009,         much in the same way you would put a team
    this time in my right collarbone, my friend Karyn         together for any project. To some, that may sound
    Watts volunteered to be my ‘orthopaedic’ support          rather businesslike but the approach worked for
    person, attending the numerous appointments,              me. I believe it reduced the risk of responding
    consultations and meetings.                               emotionally to the often overwhelmingly big
    One day we were sitting in the waiting room               decisions I had to make. A considered, rational
    together. We were reflecting, chatting and flicking       approach resulted in my ability to mobilise swiftly
    through magazines and making the occasional               during surgery and treatment times.
    reference to what had brought us here again...            The purpose of ‘Team Williams’ was clearly defined
    cancer. I was brainstorming out loud the best ways        and known to all team members: to maximise my
    to deal with the latest tumour; what I would do, what     coping, recovery capabilities and longevity; and
    I would not do.                                           enhance my quality of life.Team members were
                                                              people already in my life, invited to perform roles I
    Suddenly, Karyn appeared from behind her                  knew they were comfortable with, that suited their
    magazine; advising me I would be doing exactly            own lifestyle/commitments; and that they were
    what was required, whatever that entailed.                good at!
    Now, in the industry we work in, persons ‘in charge’
    are referred to as O/C; ‘Officer in Charge’.              A principle role ‘title’ was assigned to each team
    I was quick with my retort;                               member, though some members perform multiple
    ‘And who are you?? O/C Bones’? I challenged... to         roles.Team members are deployed as required and
    which much laughter ensued.                               are otherwise on standby.
    Surgery was scheduled and Karyn arrived at my
    place the night before with 2 black t shirts in hand.     ‘Team Williams’ is about being in the best position,
    ‘Team Williams’ was printed across the back of each       with the best team, to achieve the best results.
    t shirt. ‘O/C Bones’ on the front of hers.
                                                              ‘Team Williams’ remains an integral part of my
    Mine read ‘Captain’.
                                                              wellness plan today; nearly 3 years on.
    And so ‘Team Williams’ was born.
                                                              Devise a plan that works for you and go to it!
    Medical staff, who comprise a broad range of
                                                              Kathryn Williams
    specialists, have responded extremely well to ‘Team
    Williams’, communicating and sharing outcomes


9
CANCER SOCIETY OF NEW ZEALAND    Te Kāhui Matepukupuku o Aotearoa                                  CANTALK WINTER 2011




 The diagnosis
 On the morning when I woke
 I thought,
 maybe this is a mistake
 maybe they got it wrong.

 This thought persisted all the way
 to the hospital.
 I felt so well I was good in spirit
 I wouldn’t feel so well if I had
                                                               Yoga for breast cancer
 a killer driving through my marrow.
                                                               Following my mastectomy for my breast
                                                               cancer, I was really concerned about potentially
 We went to reception, just like
                                                               loosing mobility in my arm due to scar tissue. I
 booking into a hotel. I was light-hearted
                                                               approached my yoga teacher Kelly Fisher from
 and wondered if there might be a bar fridge.
                                                               Yoga Unlimited to ask her whether she would
 Knowing they will discover soon and send me
                                                               help me structure some yoga around the healing
 home.
                                                               process post-surgery and was thrilled when she
                                                               was able to set up Yoga for Breast Cancer classes
 She passed a form to sign
                                                               which I began as I started my chemotherapy.
 And there it was
 Black and white.                                              The classes were amazing; they gave me the
                                                               benefits of yoga but in a way that was tailored for
 There was no query, not even a provisional                    my needs throughout treatment. We were given
 Just a naked, bald diagnosis.                                 postures that helped us regain movement in arms
                                                               and chest areas after surgery. During chemo
 Mary Good                                                     we focused on breathing, calming the mind, as
                                                               well as ways to deal with nausea and insomnia.
                                                               The classes were also a fantastic place to share
                                                               experiences with others going through breast
                                                               cancer. I have certainly made friends for life
                                                               through the classes. Yoga has been a key part of
 You have Multiple Myeloma                                     my recovery and continues to be something that
                                                               I actively use to manage my lymphoedema and
                                                               healing.
 Sign here:                                                    Ed note: Many yoga centres offer such classes. The next
                                                               Yoga for breast cancer class at Yoga Unlimited starts Wed
                                                               13 July, 4pm - Kelly@yogaunlimited.co.nz / 021 889 048.



 Pink Pilates now embraces all women
 Bodyright Pilates in Petone with the aid of their Pink Pilates Trust (a local volunteer-driven charity) is now
 generously able to offer their Pink Pilates subsidized programme to any woman who has been diagnosed with
 any cancer. The Pink Pilates programme was originally specifically designed to help women with breast cancer
 regain their physical strength, improve their body confidence and incorporate exercise into their lifestyle and is
 now widely offered throughout New Zealand. Now all women can apply within 2 years of their diagnosis, must
 be at least 6-8 weeks post-surgery and have approval from their consultant or GP. Women are entitled to ten
 sessions at $20/session Mon- Fri during workhours. Bodyright Pilates Studio. Phone 04 568 9944.


                                                                                                                     10
CANCER SOCIETY OF NEW ZEALAND    Te Kāhui Matepukupuku o Aotearoa                              CANTALK WINTER 2011




 Book review - The Emperor of All Maladies
                                 No wonder this book won the 2010 Pulitzer Prize! Siddhartha Mukherjee has
                                 accomplished the task of conveying the comprehensive and complicated history
                                 of cancer through the ages. He successfully chronicles how cancer was first
                                 discovered, understood and developed up until the present day.

                                 Specific mention is made of leukemia, breast, lung and prostate cancer. I was
                                 fascinated to read how cancer was first documented in 440 BC, where the
                                 Persian Queen on finding a strange bleeding lump in her breast decided to have
                                 her whole breast cut off. Mukherjee notes how at that time such an illness was
                                 “cloaked in silence”.

                                 I was enthralled to read about the discovery and development of treatments
                                 and medications that are widely used today. In the early 1960s Tamoxifin
                                 was designed as a birth control measure. Near the end of the decade it was
                                 trialled as a cancer medication. Not only does Mukherjee chronicle the facts,
                                 he gives us an understanding of the people, their thinking at the time and the
                                 challenges before them.

 There were occasions when I couldn’t put the book down, such as when Mukherjee was explaining how
 radiation, chemotherapy and the combination of both were developed. Another gripping moment was reading
 about how in the 1960s the American government declared a ‘war on cancer’. Mukherjee introduces the
 reader to a variety of patients, doctors, scientists, and activists. One such political lobbyist was Mary Lasker.
 Thanks to her zealousness, cancer awareness was highlighted at the community and political levels.

 Society’s changing views about cancer are weaved throughout the book. In the 1950s the tobacco industry
 was in full flight promoting cigarettes to society. Medical conferences and journals became opportunities to
 promote cigarettes to doctors through advertising and free hand-outs. It took decades for the destructive link
 between tobacco and cancer to be made.

 I strongly recommend this book whether you are affected by cancer or not. Mukherjee provides a rich history
 of cancer through the ages. Mukherjee concludes that to keep pace with this malady “we need to keep
 inventing and reinventing, learning and unlearning strategies”.
 Angela Litterick-Biggs



 Relay For Life 2011
 - another winner
 The Cancer Society is thrilled to
 announce another thoroughly
 successful Relay For Life season
 held around the country over
 February and March. Despite
 tight fiscal times, tragedies and
 natural disasters, people rallied
 and supported us in achieving
 another fantastic result. This year the Wellington Division held three Relays; in the Wairarapa, Blenheim and
 Wellington. All three events showed the overwhelming commitment and passion our local communities have for
 Relay For Life. In total almost 5000 people took part and an amazing $555,000 was raised. We would like to
 thank everyone who supported us - including sponsors, volunteers and, of course, the participants.
 Helen Montgomery, Manager Fundraising and Communications


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CANCER SOCIETY OF NEW ZEALAND       Te Kāhui Matepukupuku o Aotearoa                               CANTALK WINTER 2011




Library Update with Julie Holt
Two Years to Normal: A journey with cancer. Karen              Two more titles in the excellent series of brief but
Leibovitch, Longueville Media, Australia, 2010. In 2004        comprehensive guides to different types of cancer from
Karen Leibovitch was a busy mother of three young              the Johns Hopkins University:
children, running a counselling practice from home. A          Johns Hopkins Patients’ Guide to Lung Cancer by
routine visit to her GP led to a diagnosis of oral cancer,     Justin F. Klamerus, et al. USA, 2010.
and within a matter of weeks Karen’s life was                  Johns Hopkins Patients’ Guide to Prostate Cancer by
irrevocably changed. This is her account of her diagnosis      Arthur L. Burnett, USA, 2010.
and surgery and the many challenges of recovery.
                                                               The Decision: Your prostate biopsy shows cancer.
Take off Your Party Dress: When Life’s Too Busy for            Now what?: Medical insight, personal stories, and
Breast Cancer by Dina Rabinovitch, Pocket Books, UK,           humor by a urologist who has been where you are
2007. Written with a great sense of humour Dina, a             now by John C. McHugh M.D. Jennie Cooper Press,
London journalist and mother of eight children (from           USA, 2010. Written from the insight of both a
two marriages) tells the story of her breast cancer and its    professional and patient (the author was diagnosed with
impact on her and her family. A compelling read.               prostate cancer aged 52), this book gives a good
Promise Me: How a Sister’s Love Launched the                   framework for making the often difficult decision about
Global Movement to End Breast Cancer by Nancy G.               which treatment to use for prostate cancer.
Brinker, Joni Rodgers Crown Archetype, USA, 2010. A
                                                               Chicken Soup for the Caregiver’s Soul: Stories to
story of breast cancer, caring, commitment and the
                                                               Inspire Caregivers in the Home, the Community and
relationship between two sisters, Susan G. Komen and
                                                               the World by Jack Canfield et al. HCI Publications,
Nancy Brinker. Following Susan’s death from breast
                                                               USA, 2004. Brief uplifting stories of courage from
cancer, Nancy was determined to make things better for
                                                               carers, to give inspiration, recognition and
other women with breast cancer, and her dedication led
                                                               encouragement to others.
to the formation of the Susan G. Komen for the Cure
organization.                                                  Online booklets
Be A Survivor: Lung Cancer Treatment Guide by Dr               Mummy’s Lump by Gillian Forrest, Breast Cancer
Vladimir Lange, Lange Productions, USA, 2009. A                Care UK, 2008. www.breastcancercare.org.uk/upload/
well-organised, thorough source of information,                pdf/MummysLump_-_English_%28BCC164%29.pdf
covering the emotional and physical aspects of a               A lovely story-book beautifully illustrated, designed for
diagnosis with lung cancer.                                    under-sixes to help explain their Mum’s breast cancer.
Multiple Myeloma: The Plain English Handbook for               Nutrition and the Cancer Survivor by American
Patients and Care Givers by Robert J Heller, Wollaston         Institute for Cancer Research, USA, 2010. Simple advice
Press, USA, 2009. Explains the complexities of myeloma         compiled from latest research tailored to cancer
in a straight-forward way.                                     survivors. Excellent resource. http://www.aicr.org/site/
                                                               PageServer?pagename=pub_nutrition_cs (Very slow
                                                               to download - contact the Cancer Society if you want a
                                                               PDF emailed).

                                                                                                                     12
CANCER SOCIETY OF NEW ZEALAND        Te Kāhui Matepukupuku o Aotearoa                                      CANTALK WINTER 2011




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 Send to Cancer Society - Wellington Division, PO Box 7125, Wellington 6242 ;
 Visit 52 Riddiford Street, Newtown, Wellington ,phone 04 389 8421 or email Sue Corkill - suec@cancersoc.org.nz



                Newsletters with local content are available in Nelson, Wairarapa and Blenheim
                               Please contact your local Cancer Society office.
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