Hospice Bulletin Jan09

Hospice Bulletin

PP13040/03/2009(022048)-Vol.12 No 1 – Jan 2009 Newsletter of the National Cancer Society of Malaysia, Penang Branch

Reflections: Relay for Life Fighting Cancer Together by Mui Siew Koon member of the organizing committee

Relay For Life - Fighting Cancer Together 2009 was launched for the 5th time on 8th October in Gurney Plaza by YB Phee Boon Poh, State Health, Welfare and Caring Society Committee Chairman. This very meaningful relay has become the signature activity for the National Cancer Society of Malaysia, Penang Branch. The aims of this relay are manifold – to raise awareness that cancer is not a death sentence, to raise funds for cancer education and, of course, for our hospice programmes, namely Hospice-at-Home Programme and Rumah Hospis, our inhouse facility. Both these two services are free and thus it is necessary for NCSM, Penang Branch to constantly raise funds so that these two palliative care services can continue to serve the public, irrespective of race, colour or creed.

Cancer Massages - Loud & Clear

Inspirational

Many people are very keen to share the fact when they have a coronary by-pass but, most do their utmost to hide the fact that they have cancer. Luckily, in recent years through the effort of NCSM, Penang Branch, some survivors have come out to the open by giving testimonies at our various functions. It cannot be denied, that according to statistics, one in seven men and women will be affected by cancer some time in their life-times. The figure will rise to one in five in 2020 when Malaysia becomes a developed country.

It is sad to note that to the general public cancer means death. As our survivors have testified, most cancers can be treated if detected early and treated professionally without delay. Also cancer can be prevented if healthy life-styles are practiced. In the event that cancer is detected late, there is palliative care to depend on to give better quality of life in one’s final phase on the earth. Relay for Life – Fighting Cancer Together was initiated by Dr Gordon Klatt in the United States of America in 1985 to raise awareness on cancer after his friend died of the disease. Since then thousands of such relays have been held in the US raising millions of dollars. To date Relay for Life has been held in 20 countries, with Malaysia being the latest addition. It was 5 years ago when NCSM, Penang Branch was awarded the franchise. The launch for each relay would be held in the fourth quarter of the year and the actual relay would be held in March the following year. The half-year interval is to enable dissemination of correct cancer information to the public, through flyers, brochures, talks, seminars and exhibitions. In the first year we had around 100 teams of 10 participants and the amount collected was about a quarter million ringgit. The 2008 relay recorded some 300 teams and the amount collected came to half a million ringgit. Many activities have since been added to make the event a fun-filled one for the whole family.

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On the day of the event, Taman Perbandaran Pulau Pinang, formerly known as the Youth Park, would be teeming with young and old - thousands to be exact – with participants, volunteers, survivors and of course, committee members. As early as 4.00 pm entertainment begins. There would be lots of friendly competitions for young and old, colouring contests for children, clowns mingling with the crowd, performances of cultural and modern dances and songs. In addition there would be lots of sumptuous food and drinks available.

Community Owned

At precisely 6.00 pm the opening ceremony begins. In the past we had the privilege of Tuan Yang Terutama Yang DiPertua Negeri Pulau Pinang, the Chief Minister or some other state dignitaries to grace the function. The first lap is done by survivors, cheered by all present for their courage and spirit for coming out to the open. After this it is free for all participants, who would take turns to be on the field till 10.00 am the following morning.

We are indeed very grateful to all our donors and sponsors, individuals as well as corporate bodies, participants and volunteers, not forgetting our faithful organizing committee members and sub-committee members for having helped us in the past. It is hoped that we would be able to get more donors, more sponsors, more participants, more volunteers, more members to serve on various committees and subcommittees, and of course, more funds. I assure all of you that Relay For Life is indeed a very worthwhile activity to be in. Registration for teams is open now. Team registration (for 10 participants) is RM100.00. Each member receives a kit consisting of a T-shirt, updated write-ups on cancer, brochures, stickers, bookmarks and a donation card. The donation card together with donations must be handed back to Rumah Hospis by 28 February 2009. For inquiries please contact Relay for Life Secretariat: Tel: 04-2284140 / Fax: 04-2264676 / E-mail: [email protected]

Fun Filled Activities

CONTENTS

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Educational

The walk would be interrupted for half an hour at 8.00 pm for the luminaria ceremony - the silent and solemn half hour when we quietly remember our dear ones who have left us. Then at 8.30 pm merriment continues till midnight. At 7.00 am the site is again alive with various activities.

03 HAPPENINGS • Carers’ Meetings - Penang Island - Seberang Perai • Palliative Care Together in Perth 2009 • Soft Sift In An Hourglass: Stories Of Hope And Resilience At The End Of Life – By Dr Rosalie Shaw • Counselling Course 2008 • Palliative Care Case Presentation 04 Launching of Relay For Life 2009/Roadshows 06 40th Anniversary Celebrations 07 Prem Joshua in Concert 08 From the bedside 09 Stories by Survivors 10 Tribute to the late Dato’ Poh Cheng Hee & the late Miss Ho Choo Sin 11 Ncsm & Agm Elections 11 Volunteers 12 Donors

Walking for a good cause HOSPICE BULLETIN is the quarterly newsletter of the National Cancer Society of Malaysia, Penang Branch. We welcome your contribution to the bulletin. Please submit at least six weeks before issue date which are the first day of January, April, July and October 2009. All items submitted for inclusion in the Hospice Bulletin must be signed but author’s requests to remain anonymous will be respected. Contributions can be sent to: The Editorial Team, Rumah Hospice Pulau Pinang, 250A Jalan Air Itam, 10460 Pulau Pinang. Tel: 04-228 4140 Fax: 04-2264676 EDITORIAL TEAM Dato’ Seri Dr T Devaraj, Dr Oo Khaik Cheang, Mdm Mui Siew Koon, Ms Ho Yet Min, Dr Dicky Ng Teik Kee PUBLICATION ASSISTANTS Ms Chitra Alagan The views expressed in HOSPICE BULLETIN are not necessarily those of the National Cancer Society of Malaysia, Penang Branch or of the Editorial team. www.penanghospice.org.my www.relayforlife.org.my

HAPPENINGS CARERS’ MEETINGS – Penang Island

Carers’ Meetings will be held every 1st and 3rd Saturdays unless otherwise indicated (*) by the organizer. Venue : Rumah Hospis Pulau Pinang Day : 1st and 3rd Saturdays Time : 11.30am - 12.30pm 2009 Jan Feb Mar April May June



3 Case Studies 11 Maximising Family Tree 21 Coping With Conspiracy of Silence 7 Case Studies 21 Empowering Family Carers 4 Case Studies 18 Long Term Inpatients 2 Case Study 16 Managing common co-morbid conditions 6 Case Study 20 Continuous professional development

CARERS’ MEETINGS – Seberang Perai Venue : Klinik Kesihatan Butterworth Day : 3rd Friday of every month Time : 1.00pm - 2.00pm

Carers’ Meetings in Seberang Perai are held every 3rd Friday of each month. These meetings are open to everyone. Normally volunteers and our 3 Palliative Care Nurses of the National Cancer Society of Malaysia, Penang Branch meet to discuss the on-going programmes carried out by the Society and how they can contribute. Problems of home care cases are discussed and shared at such meetings. In addition volunteers bring newspapers and other items for recycling, with proceeds donated to our Society.

SOFT SIFT IN AN HOURGLASS: STORIES OF HOPE AND RESILIENCE AT THE END OF LIFE – BY DR ROSALIE SHAW A collection of stories written by Dr Rosalie Shaw, well known for her Palliative work. Soft Sift in an Hourglass retails at SG16.00 for paperback You may order via email Jenny to jenny@ar mour publishing.com or call 65-62769976 (Ext 212)

COUNSELLING COURSE 2008

This course with 31 participants ended with an examination in September. Successful candidates numbered 10 while 11 were given attendance certificates only. The 14th counseling course will be held in June 2009. For more information, please see the April 2009 issue of this bulletin.

PALLIATIVE CARE CASE PRESENTATION

Pure Lotus Hospice of Compassion hosted the 17th Clinical Meeting on 21 October. 36 participants from Pure Lotus, Rumah Hospis, PCU Unit of BM Hospital, PCU Unit of Penang Hospital, Charis Hospice and Penang Hospice Society attended the meeting. Dr Oo Loo Chan of Charis Hospice presented a topic on Western Medicine/Traditional alternative medicine. Dr Lee Her Chin of Pure Lotus shared a case study on a patient with Cancer of the Aesophagus. Dr Lim of BM Hospital talked about a patient with cancer of the breast & lymph edema and Dato’ Seri Dr T Devaraj presented a case of a patient with cancer of the brain. The next Clinical meeting is scheduled to be held at 3pm, on the 12 of January 2009 (Monday) at the Palliative Care Unit of Hospital Bukit Mertajam, All those interested in Pallaitive Care are welcome to attend this meeting. For more information please contact Chitra at 04-228 4140.

PALLIATIVE CARE TOGETHER IN PERTH 2009

International Conference on Cultural Connections for Quality Care at the End of Life Perth – Western Australia 24-27 September 2009 The Inaugural International Palliative Care Conference and the Asia Pacific Hospice Network www.pallcare.org.au www.aphn.org

17th Clinical meeting hosted by Pure Lotus

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HAPPENINGS

LAUNCHING OF

RELAY FOR LIFE 2009 For the fifh year running, the National Cancer Society of Malaysia, Penang Branch and Penang Hospice Society have embarked on this programme to raise cancer awareness in our community and to raise funds for our community services.

Survivors posing with YB Phee

This campaign was launched by YB Encik Phee Boon Poh, Ahli Majlis Mesyuarat Negeri Pulau Pinang on 8th October 2008 and will close with the Relay. The Relay itself will begin from 6.00pm on Saturday March 14th 2009 to 10.00am on Sunday March 15th 2009 at Taman Perbandaran Pulau Pinang (Youth Park). It will be a family event of celebration of survivors with cancer, solidarity with cancer patients and their families and resolve to continue fighting cancer together as a community.

RELAY FOR LIFE 2009 ROADSHOWS 4

Harmony Food Fair

2nd Health and Fitness Expo -PISA

Harmony Food Fair

Penang Food Hunt - New World Park

HAPPENINGS

Jabatan Kesihatan Timur Laut providing free health screening

Health Education Department - Promoting Healthy lifestyle

INTERNATIONAL RELAY FOR LIFE TRAINING By Gladys Loh, Relay For Life 2009 – Committee member

On the 19th November, Chitra and I attended the International Relay For Life (IRFL) training at Hilton, KL organised by American Cancer Society. We were welcomed by a cocktail dinner at 7.30pm by the ACS trainers, Iris Pendergast and Darnelle Bernier and host, National Cancer Society of Malaysia, Kuala Lumpur. Many other delegates from NCSM Selangor, Johor, Perak, Perlis, Kedah and overseas participants from Taiwan, Japan and Philippines were there too.

Apart from the training, Chitra and I played “hosts” to the Japanese, Philippines, Taiwanese and Sarawakian participants by bringing them to Petronas Twin Tower for shopping and dinner.

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We had a wonderful and fun-filled time at the training. It was also very beneficial as it showed us the way on how to take Relay to next level.

Besides getting to know each other, we also got to exchange ideas on our challenges and success and how Relay For Life was celebrated in other countries. We were briefed on how a solid committee structure looks like, on leadership qualities, eyeing on future committees and how to make the event more memorable. It was also stressed that the more survivors we include, the more successful Relay For Life will be as survivors are our hope for Relay. We also discussed ways to connect with them so that they walk back with HOPE after the Relay. We were briefed on how to make the event educational as it was stressed that much as we want to make it memorable, we must not forget that EDUCATION is the main key for RFL. We also learned that it is very important to have subcommittees as that’s the one thing that will keep Relay from reaching it’s potential if we don’t have enough people to do the job.

IRFL trainers Ms Pendergast & Ms Bernier posing with all the participants Gladys Loh sharing her views at the training

40th Anniversary Celebrations Chief Minister of Penang addressing guests at the dinner

Penang Rotary Club donating RM40,000 to the society

40TH ANNIVERSARY CELEBRATIONS Anniversary Dinner 6

In conjunction with the 40th anniversary celebrations of National Cancer Society of Malaysia, Penang Branch a series of activities were carried out in the month of October. A dinner was held at the Georgetown Bayview Hotel, Penang on the 25th of October. The Chief Minister of Penang, YAB Tuan Lim Guan Eng attended the dinner with his honourable wife. In support of the Society’s work, the Penang Rotary Club generously donated RM40,000 at the dinner. The Dinner raised over RM89,000. Much thanks to our donors, sponsors, supporters and all well wishers. Lucky Winner - courtesy of Venessa Diamonds

Supporters, donors, volunteers & staff enjoying Muhibbah Dinner.

Dance Factory performing the peacock dance

SPECIAL REPORT

Breast Cancer Talk As October was also a Breast Cancer awareness month, the Society invited Ms Dee Sidhu, a breast cancer survivor and founder of Amanita, a company promoting products for women living with cancer to give a talk entitled “Breast Cancer – Women’s Perspective”. The talk was held in Rumah Hospis on October 5.

Free mammograms Breast Cancer - Women’s Perspective

The Penang Rotary Club sponsored 200 mammograms at RM60 each to be done at the Pusat Wanita Toh Puan Datin Khadijah. Eligibility was for women over 40 years who had not had a mammogram before.

PREM JOSHUA IN CONCERT

Indo-fusion musician Prem Joshua and band members consisting of longtime partner Chintan Relenberg, Raul Sengupta, Satgyan Fukuda and guest artist Kumar Karthigesu, a local sitar exponent performed to a packed hall at the Wawasan Open University on 3rd December 2008. The dinner and concert organised by the Temple of Fine Arts Penang and National Cancer Society of Malaysia, Penang Branch was to raise much needed funds for Rumah Hospis Pulau Pinang. Through this effort over RM70,000 was raised.

LE TOUR DE LOVE PENANG – XIAMEN TRANSNATIONAL CYCLING LE TOUR DE LOVE CHARITY FUND RAISER This cycling campaign ended in May and was in aid of five non-charitable organizations, National Cancer Society of Malaysia, Penang Branch, St John’s Ambulance, FPA Penang, Tamil Foundation Malaysia and Persatuan Pendidikan Du Zhong A big THANK YOU to YB Teh Yee Cheu and all those involved in this fund raiser. The total amount raised through this effort was RM24,004.45. An amount of RM4,800.89 was donated towards National Cancer Society of Malaysia, Penang Branch.

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STORIES FROM THE BEDSIDE

My great grandmother Janice Lim – 9 year old My name is Janice Lim. I am 9 years old. I study at Sekolah Jenis Kebangsaan (C) Sin Kang School. I am going to standard 4 (yellow) next year. We stay in a flat with my “Ah Chor” (great grandmother). My great grandmother is 91 years old. She is so loving, caring and understanding. When I found out that she has cancer on her left eye, I felt so sad because it caused her so much pain. At times I cry myself to sleep. How I wish I could stop her pain and suffering. We used to talk with each other but now she could only listen. And it’s okay. I love her very much. I am willing to do the talking while she does the listening.

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Janice Lim & Ah Chor.jpg

Being by her side makes me feel so happy and I am so proud to have her as my “Ah Chor”. Now she cannot eat by herself. I feed her by the syringe. My aunt taught me how to feed her. “Ah Chor” sleeps in the hall during the day. At night, papa carries her to her bed. Every night before I go to sleep, I pray to GOD, “Please take away all the pain from her”. It hurts me so much to see her like this. Please help her. Now I give her the medicine correctly as the nurse taught me. I am so happy my “Ah Chor” has no more pain. “Please don’t take my great grandmother away from me yet”. “Thank you GOD”.

Final Desire Madam S had advanced cancer of the uterus. She has 4 sons and 2 daughters and many grandchildren and great grandchildren. When asked about her life, she said she had a good life with filial children who are all doing well. What about her final desire in life? Her answer is to go to Nirvana. In her dream she saw a holy monk coming down from heaven visiting her in the home chanting for her.

I am not ready yet, Send me home Madam L is a 75 years old lady. She is having cancer of the cervix. She had a dream. In her dream she said her house was flooded. The water rose to halfway to heaven. She was protected from drowning by a heavenly dragon which curled her up. There was peace and happiness in the halfway land. She was surrounded by all the saints from different faiths. Then she saw an English boy calling her to follow him further up to heaven. But she told the boy, “Send me home, I am not ready yet.” “I still have things to do on earth.” She suddenly woke up and found herself lying comfortably on her own bed. She then realized that it was only a dream

By Palliative Care Nurse Helen Cheah

STORIES BY SURVIVORS

“CANCER”

just a 6-letter word by Loo Chye Ngoh, a cancer survivor My first encounter with cancer came just after Chinese New Year in 1998 when there were some blood-stains on the toilet tissue paper I just used. I dismissed the problem thinking that I had taken too much “heaty” food recently. Moreover I was prone to constipation. When the blood-stains persisted, my company’s panel doctor prescribed Anusol for piles and later antibiotics for infection. Then in July 1998 I was shocked that my toilet bowl was full of red polka dots. The surgeon confirmed it was not piles, but a suspicious growth in the rectum. It was hard for me to accept the fact that I was not well because I was far from being pale and skinny. Also I practiced a healthy lifestyle. I did not take high-fat food. I used to skip lunch and took lots of fruits. I taught aerobics 6 days a week in the evening. I took light dinner except when there was a dinner function. With that daily routine, my weight still maintained and I still was plump. In any case I was operated on. A resection was done. The report stated Duke B Well-differentiated adenocarcinoma of the rectum. I was discharged after 9 days and was on medical leave for a month. I learnt of the existence of a support group “Among Friends Wellness Centre”, located in Caring Society Complex. Seeing that I was frightened and sad, my husband accompanied me to the centre on the first occasion. The minute I saw Madam Chee Goon Hoe, the founder, a very warm person, tears ran down my cheeks. After pouring out all my worries and fears to her, I walked out from the centre, full of confidence and was mentally prepared to fight this dreadful disease. I had 25 sessions of radiotherapy in November 1998 in Mt Miriam Hospital and continued with oral chemotherapy for a year. I suffered loose bowels and my anus area was sore. I had a difficult time, but for the sake of my family and loved ones, I soldiered on. My period ceased. I experienced hot flashes and emotional fluctuations. I was placed on hormone replacement therapy to relieve me of the symptoms. Then I had the second encounter with cancer. It was in 2006 when I suffered heavy discharge. Initially I ignored it as every year I did pap smears and had routine checkups.

When the discharge became heavier I had an ultrasound done. Then I had a D and C and I was diagnosed with Adenocarcinoma of the Endometrium. I was shocked beyond words. I was not prepared for the horrible news. How could cancer strike me twice! My mind went blank. I sought a second opinion. I was advised to do CT scans, MRI and blood tests. The CT scans showed that my 2 ovaries and lymph nodes were affected, and there were a few “dots” in my lungs and liver and two tumors of 4cm each in the spinal cord. I underwent a total abdominal hysterectomy followed by 6 cycles of chemotherapy that ended in December of the same year and 12 sessions of radiotherapy targeted at the tumors at the spinal cord in January 2007. With the support from my family, friends and the support group I was able to pull through chemotherapy and radiotherapy successfully. But I lost my hair then. After this second brush with cancer, I realized that life is fragile. So I opted for early retirement. I am now in remission and I have a new appreciation of my time and life. I am an active member at the support group mentioned earlier. We meet every Wednesday and last Saturday of each month from 3 pm to 5 pm You are most welcome to visit us. At the centre, we share our experiences and exchange information. The insights and methods for coping will help remind one another that no one is alone and that many have walked this difficult road before. Cancer patients can lead normal lives. Life does exist at the end of the dark tunnel. Now I have a personal collection of useful books on cancer and nutrition. Every morning I practice qigong in Youth Park and in the evening I brisk walk in my neighbourhood park. Now, I take less meat and more vegetables. The CT scan in August 2007 showed that my lungs and liver are cleared and the tumors in my spinal cord no longer visible. I am grateful that bad times are over. I look forward to a better tomorrow. I strongly believe that cancer is not a killer. It is just a test from God to make us value our lives more. I am happy to share my knowledge and my experiences with cancer patients and their families. My message to people who are fighting the big C is: Know everything about the disease; never underestimate the power of prayers (whatever your religion is); and appreciate the support of family and friends. Believe in yourself. CANCER is just a 6-letter word. There is no reason to be afraid of it.

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Tribute to the late Dato’ Poh Cheng Hee & Miss Ho Choo Sin by Mui Siew Koon

The National Cancer Society of Malaysia, Penang Branch is extremely sad to have lost two of its very caring and generous supporters, Dato’ Poh Cheng Hee in 2006 and Miss Ho Choo Sin recently.

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I had the privilege of knowing both these two wonderful ladies since 1998. Before then I was aware that they were respected members in the education circle. Dato’ Poh had been the principal of Phor Tay High School for decades while Miss Ho was a lecturer in a teacher training college. The first time I met them was when they attended the floral demonstration and exhibition, “Flowers from The Heart” jointly organized by the Penang Floral Art Society (of which I was president) and the Lions Club of Georgetown City (of which I was president too then) to raise funds for the National Cancer Society of Malaysia, Penang Branch. I was pleasantly surprised when Dato’ Poh and Miss Ho together pledged a huge donation on the spot, amounting to one-third the total collection netted by the 3-day show. That cheque marked the beginning of their many donations to NCSM, Penang Branch for our hospice programmes in the last decade. They were staunch Buddhists, leading simple lives, not keen over material stuff or fame. They made their donations whenever they received dividends or interests and that would be a few times a year. We, in NCSM, Penang Branch, are very grateful to both these two caring ladies for their kindness and generosity, in helping us help the sick. May they rest in peace.

Photo shows Dato’ Poh (in turquoise), Miss Ho (In purple) and Ms Rosie Yew (in checks) after receiving their token of appreciation from Mui in 1998

NCSM & AGM ELECTIONS THE NATIONAL CANCER SOCIETY OF MALAYSIA PENANG BRANCH NCSM (Pg Branch) held its 39th Annual General meeting on Sunday 23 November 2008 at Rumah Hospis. It was an election year for the Society and a new Executive Committee was voted into for office for 2009 – 2012. Almost the entire current Committee was re-elected into office with the exception of two new faces: Dr. Khor Yoke Lin (lecturer, USM) and Assoc Prof. Dr. Zuraidah Mohd Yusoff (USM). This might partly reflect the confidence that members had in the previous committee but is more likely because of lethargy and lack of new and committed members among the general body. The rest of the Committee comprise the following Chairman Vice-Chairman Hon. Secretary Hon. Treasurer Committee members

Dato’ William Ng Jit Thye Dato’ Seri Dr. T. Devaraj Dr. Oo Khaik Cheang Dato’ Dr, Chan Kok Ewe Mdm Mui Siew Koon Dr. Aishah Knight Dr. Bina Rai Wimal Jinadasa Tan Jit Seng Dr. Saad Othman

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Thank You Volunteers The Society would like to thank Ms Nisha Dhaniya and Penang Girl Guides Penang for their time and energy spent volunteering at Rumah Hospis.

Girl Guides Lisa Anne Koh & Janice Lim help prepare Relay Kits

Nisha with Ho Yet Min volunteering at the Launch of Relay 2009

If undelivered, please return to: HOSPICE BULLETIN, Rumah Hospis Pulau Pinang, 250A Jalan Air Itam, 10460 Penang, Malaysia

WISH LIST

WAYS YOU CAN HELP US... DONATE CASH We welcome all levels of donation, whether it’s a onetime gift or a monthly donation. For more information, call 04-228 4140. Tax exempt receipt will be issued for donations of RM50 and above. Please make cheques payable to: National Cancer Society of Malaysia, Penang Branch DONATIONS IN KIND • Storage cabins (to store medical equipment) • Sundries & domestic items • Wheel chairs with head and neck support • Oxygen concentrator • Syringe drivers • Sheepskin rugs • Ripple mattresses • DVD player (for cancer exhibitions) • Lawn mower ADMINISTRATIVE ITEMS • Mobile phones (for nurses providing care for patients at home) • Computers • Printers VOLUNTEERING Volunteer your time and talent. Volunteering is a great way to help. We invite you to share your time, talents and resources to help us at Cancer Awareness campaigns and Fundraising events.

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