Tag Archives: Support Groups

Cancer Survivors' event to be held in London

CANCER WELLBEING AFTERNOON

 Monday, March 26th 2012

 Kensington and Chelsea Town Hall, Small Hall

 3 – 7 pm

 Cancer Survivors often speak of feeling  ‘abandoned’ once they leave hospital.  This Event aims to show survivors that there are organisations, services and people out there willing and ready to offer help and advice’  improving quality and wellbeing of life for survivors after cancer.

This is a FUN event with a serious purpose – to show cancer survivors, carers, nurses, medical staff, doctors etc. just what is available in the Borough.

Local Companies have donated spot prizes and raffle prizes ~

first was Chelsea FC Foundation with a football signed by their players

 

Stalls on :

–       Rare Cancers         Prostate Cancer     Breast Cancer         Cancer Support centres

       Free Prescription information stall     Financial advisory stalls  –   Welfare Benefits department (DWP)

–       Citizens advice bureau            Macmillan               Cancer champions

–       Advocacy advisory groups (e.g. Age concern, Advice now, RBKC, Welfare directory)

–       Travel Insurance           Skin care products          Cook and taste demonstration session- Nutritionist

–       Reflexology         Equipment specialist          Lingerie           Health trainer and exercise advice

 –       Medical Tattoos. Wigs  – and more.    (Warning – due to other commitments if a stall can’t participate, we have others to take their pla

Organisers:  Verite Reily Collins,   Paula Murphy, Ijeoma Igwama, Gaenor Holland Williams

Information : http://www.Rbkclink.org or www.after-cancer.com

English: Kenneth Ferrie's golfbag, detail: Flo...

Daffoidils spell Spring Wikipedia

Or contact; Ijeoma Igwume at http://www.kclink@hestia.org

 

0208 969 4852

 

Or :  Verite Reily Collins 020 7351 4434  verite@greenbee.net

 

 

 

 

 

 

 

 

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Lymphoedema survivors can now ditch the grunge

LympheDivas rolls out

 

 

fashion sleeves

Sleeves come in matching colours for clothes

 

Two American breast cancer survivors took one look at ‘grunge’ coloured elastic sleeves – and said ‘No’.

Thanks to their persistence, women can now buy compression sleeves in different colours, patterns, stripes and anything else the company can think up.

There are even specially-themed sleeves to wear when Dragon Boat racing!

Each sleeve is made to measure, and they cost $90.

If you are fed up with ‘granny grunge’ sleeves, look them up on www.lymphedivas.com

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Secondary Breast cancer – conference highlights latest information

pink ribbon

Image via Wikipedia

Medicine and Me: Living with Secondary Breast Cancer

Royal Society of Medicine, in association with Maggie’s and Breast Cancer Care, has organised a conference

Tuesday 18 October, 1.00 pm – 5.30 pm
Venue: Royal Society of Medicine, Central London

This is a forum in which patients’ concerns about Secondary Breast Cancer are given top priority.

The meeting will provide an opportunity for patients and their families to

  • share their experiences
  • to hear about the latest research
  • and to question the experts.

The audience at this meeting will comprise those with Secondary Breast Cancer, their families, carers and advocates, representing about 70% of those present; and clinicians and researchers, representing not more than 30%.

The programme includes:

The experience of living with secondary breast cancer over time
Family dynamics – how they are affected?
Legal aspects for cancer patients
Can we afford new treatments?

Details and registration:    http://www.rsm.ac.uk/medandme

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'Getting over' cancer isn't easy

Friends who say “you are lucky”

risk a bashing from survivors


When my mother had cancer in the 60s, she spent weeks being cossetted in hospital…..

But left without a single pill or drug to take.

She lived for another 50 years, and had few after-effects.

Contrast her life after cancer with that of today’s cancer patient

Who often feels neglected, abandoned or just not listened to by doctors who are too busy to listen to our concerns – they are getting on with treating the next patient

  • Our generation will – on average live a lot longer
  • But we have to live with depression and after effects of all the drugs, chemo and radiotherapy that bombard our bodies.
  • Yes, most of us are happy that these aides are there to help up live longer.  BUT the downside is……
  • You expect to be elated, but, as a ground-breaking new book reveals, cancer survivors are often left feeling depressed, exhausted and even angry.

What type of people would benefit from The Cancer Survivor’s Companion?

More people than ever are surviving cancer. But many struggle with life after the disease, as explained in a revealing new book by psychologist DR FRANCES GOODHART and health journalist LUCY ATKINS.

“People who are getting on with their life, are managing, functioning, but are finding that when they get their head on their pillow at night then the worrying thoughts crowd back in – they find that they are just not feeling that they are back where they want to be. They are people who are really struggling psychologically and probably need one-to-one back-up.”

The authors identify some of the most common problems . . .

Depression

Low mood — or even depression — is one of the most common side-effects of cancer survival. Research has indicated that between 25 and 40 per cent of people may go through some depression after cancer.

Sometimes this feeling kicks in almost as soon as treatment ends, but it might also hit you months or even years later. There are many reasons why your mood might plummet after treatment, but the basic summary is simple: you have been through a very tough experience, physically and emotionally, and it takes time to recover.

You are not mentally ill, you are not ungrateful or a wimp, and you do not automatically require professional help (though you may find this useful). You’re just feeling sad.

Your own expectations about life after cancer also play a part. Often people who are going through cancer treatment make deals with themselves about what they’ll do if and when they get the all-clear.

‘I told myself, and my wife, that if I got through this I would put the rest of my life to good use,’ says Keith, 45, a leukaemia survivor.

‘We talked about how I’d leave my boring job in accounts. We’d set up a residential home together to provide a loving and homely atmosphere for elderly people in their twilight years.’

But the pressure ‘to make the most of life’ can — and often does — backfire. It can feel overwhelming. And this can leave you very confused, lost and low.

Then there is the huge hit your body has taken. You may be scarred and shaken up. You may have suffered enormously. You may feel overwhelmed by side-effects, such as fatigue, mobility difficulties, pain, discomfort or lymphoedema (swelling). On top of this, your general strength and fitness will probably have dimisnished.

Victorians

The Victorians had a concept of ‘convalescence’. They recognised that after a major illness it takes someone time to recover and regain their strength. But over the years — maybe because of the amazing advances in medical treatments — we’ve somehow lost this valuable idea.

My mother spent weeks in hospital after her mastectomy.  Today’s patient is chucked out of hospital one or two days post surgery, carrying disfiguiring drips, mentally bruised and battered, and told “you’ll be fine”.

The expectation these days is that you should be raring to go the moment you are discharged (or as soon as the time between follow-up appointments is lengthened). Instead of telling yourself you shouldn’t feel low, allow yourself time to feel this way.

Sadly, you can’t pack yourself off to a Victorian clinic in the Swiss Alps, but try to work out how to look after yourself while you ‘convalesce’.

There are a lot of practical ways to tackle depression and many effective ones involve simple lifestyle changes. These include eating well, getting active, even just going back to your old ‘grooming’ routines.

Anger

Mixed emotions: Rather than being relieved, many cancer survivors feel angry about why they had to suffer and the treatment they had to endure

If one more person tells me I am so lucky to have got through my cancer, I won’t be responsible for my actions,’ says Gill, 46, a breast cancer survivor. ‘Yes I’ve survived, and I’m immensely relieved about that, but to suggest I’m lucky to have had my breast removed, gone through chemo, lost my hair and had an early menopause shows how ignorant people can still be about cancer.’

Like Gill, you’ve faced your cancer and, after being given the all-clear, are where you have longed to be. So why are you still angry?

One reason is that you still feel threatened. Though cancer is no longer an immediate danger, it might still feel close by. You may be experiencing feelings of helplessness. During treatment, you and your medical team are busy doing something about the cancer.

But when you reach the end of your active treatment phase, even though it’s obviously what you have been longing for, you can end up feeling lost, even helpless.

When active treatment ends, people often begin to look backwards, trying to work out what caused their cancer. It’s common to go over and over this.

If you smoked, drank too much alcohol or did any of the numerous carcinogenic things we all do every day, then you might feel regret and guilt. You may also feel angry at yourself.  Other people’s expectations can be frustrating. Whether they assume you’ll instantly spring back into your normal life or insist on treating you like a fragile flower, it’s common to feel misunderstood.

Anger is not always bad. There are certain situations where it’s useful to get angry: it can help you respond quickly to a threat or motivate you to challenge something unfair or make sure your needs are met.  When the hospital where I was treated brushes off my concerns, I find as a journalist I can give a voice to my anger by thinking ‘laterally’, and writing to the right person to suggest ways to improve the way we are treated.

It’s perfectly reasonable, for instance, to be angry if you hear the local chemotherapy suite is closing. You might use your anger to write letters to the authorities or set up a campaign to keep it open. However uncontrolled, over-the-top or misplaced anger is difficult not just for you, but for the people around you, too.  Similarly, the new Health Bill is closing down many useful and helpful services – so we can rally round and fight closures.

The Hydrotherapy pool at Chelsea and Westminster Hospital was supposedly ‘shut for maintenance’.  This went on and on for seven months;  so those who used to use the pool got together and started writing letters;  yesterday I received a letter saying it had re-opened.  Well done, girls!

There are so many other ways to prove Patient Power works!  So don’t be afraid to tackle them.

Fatigue
Common side effect: Battling the disease physically and emotionally can leave many people exhausted

Fatigue isn’t like any tiredness you’ve had in the past. It affects you both physically and mentally. It can be overwhelming or niggling. Or it can veer between the two.

It is also the most common — not to mention the most frequently ignored — side-effect of cancer and its treatment. Fatigue is a physical and mental response to the stresses and treatments that cancer brings.  It is also a known side-effect of certain medications used in chemotherapy (it can take a surprisingly long time to get over these.)      Other causes include ongoing medication and changes in your immune system or hormone levels.

Your body is also likely to be out of condition — this can make you feel drained and lacking in energy — as, too, can disrupted sleep, which is very common among cancer survivors. Your body has taken a huge hit and needs to be built back up.

You need to learn to prioritise your tasks and to plan ahead to allow for this prioritising. Pace yourself.  Take a nap EVERY AFTERNOON.  The Victorians knew this was sensible – so did Winston Churchill.

The above includes extracts from The Cancer Survivor’s Companion by Dr Frances Goodhart and Lucy  Atkins, published by Piatkus at £14.99.  © 2011 Dr Frances Goodhart and Lucy Atkins.                                                                              To order a copy for £12.99 (including p&p) call 0843 382 0000.

 

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Are American doctors more honest with cancer patients?

National Cancer Survivors Day

Image via Wikipedia

Are you a ‘Twilight Patient?’

 

Eight years after first treatment for cancer, U.S. Cancer patient Joanne Young has been told she is cancer-free. However, cancer treatment destroyed her ability to conceive, and she suffered bouts of brain fuzziness for a year or so after chemo. She had always had low blood pressure, but now she must take medication for high blood pressure.
“I’m happy for every day,” she says. “But at the same time, it’s not like everything just returns to what it was.”

Joanne belongs to a large and growing group—cancer survivors. There are 12 million in the U.S. alone, a number that has more than tripled in the last 30 years, according to Livestrong, the nonprofit group founded by renowned cyclist Lance Armstrong to support cancer survivors.

“Cancer treatments are more successful,” says Dr. Catherine Alfano, program director of the National Cancer Institute’s Office of Cancer Survivorship. “We also have an aging Baby Boomer population, and more people will be diagnosed and treated for cancer than ever before.” But, she points out, “Even while we have more diverse types and more successful treatments, they all still exact a toll on the body.” As a result, long-term survivors like Youner are the subjects of considerable medical attention and research.

Well done America – doctors are honest enough to admit survivors can have problems
And they are doing something about it.

Last year Livestrong surveyed more than 2,000 cancer survivors about their concerns. What was most interesting, notes Ruth Rechis, the foundation’s director of evaluation and research, was that “even up to 20 years out, no one had had all their issues resolved.”

In Britain, Survivors are told by doctors

  • You are free of cancer – it won’t come back
  • I don’t know why you are feeling tired – take a holiday
  • We don’t know what causes internal bleeding/fatigue/loss of nails/continual vomitting, etc.
    Instead of arranging tests, scans, blood tests etc. all for one day, these are strung out in a series of individual appointments
  • Patients are given the impression they are moaning for no cause – a nuisance – should ‘pull yourself together’ – why keep coming back?  I still don’t know if I should be furious, or laugh after I was told the other day, “you have had more than enough attention”.  Thanks, David Cameron – this is the result of current cuts in cancer care.
  • But Patients who go to Europe say doctors (both State and Private), will give a thorough medical, then suggest ideas and solutions.

So YOU are not alone, but while the problems survivors face vary according to their disease and treatment, here are some of the major health issues reported in the States:

Fatigue

Many people know that chemotherapy treatments can cause profound tiredness, but they may not realize that fatigue can persist in some survivors for years. “We’re not entirely sure, but it may be due to unchecked inflammation in the body,” says Dr. Patricia Ganz, a professor at UCLA School of Medicine. Treatment could possibly push the immune system into overdrive, and in certain patients, the resulting inflammation could increase fatigue “as if the body were constantly fighting off a bad flu,” Dr. Alfano adds.

Pain

Sportsman Kenechi Udeze was four seasons into playing for his team when searing migraines sent him to his physician in 2008. The headaches turned out to be a symptom of acute lymphoblastic leukemia. Udeze underwent a bone-marrow transplant the same year and was declared cancer-free. But the nerve damage, or neuropathy, from the aggressive treatment he underwent ended his pro-football career. “Nerves regenerate very slowly, and my feet, my grasp, they just weren’t what they were,” explains Udeze, now 27 and living in Seattle. The former defensive end has also been left with severe chronic pain. “In the middle of the night, my toes and ankles contract so hard, it’s like a cramp times 10,” he says. Neuropathic pain can be caused by some forms of chemotherapy. Radiation and surgery may also leave the patient with scar tissue, leading to painful tightening of the skin’s surface or internal adhesions. “Many cancer survivors need pain control,” Dr. Ganz says. “They need palliative care like you get at the end of life. Only here, they’re not dying and suffering—they’re living and suffering.”

Cognitive impairment

Last year in the Journal of Cancer Survivorship, 74 women were interviewed at least one year after the completion of their breast-cancer treatments. One of their most common complaints was what patients and doctors call “chemo brain,” a loss of memory and an inability to concentrate. No one is sure why it occurs, Dr. Alfano says. “Survivors are telling us they’re having cognitive problems, but when we give them standard neuropsychological tests, we can’t detect impairment. It may be the tests’ fault, so we’re using brain MRIs and PET scans to measure brain function.” According to Dr. Alfano, one current theory is that people who carry a certain gene associated with Alzheimer’s may be more vulnerable to chemo brain than people without the gene.

Infertility and sexual dysfunction

Cancer treatment can leave many patients—men and women—infertile. Even when it doesn’t, it can impair a woman’s fertility by reducing her total number of eggs. Some survivors also report suffering sexual dysfunction after they’ve been pronounced cancer-free, which could possibly result from a combination of physical, hormonal, and psychological factors.

Depression and anxiety

Survivors have an expression: “Cancer may leave your body, but it never leaves your mind.” Depression and anxiety could be natural reactions to receiving a traumatic diagnosis of a serious illness like cancer, but in some cases, they may be the result of treatment. “Clinicians are investigating if depression could be the result of the body’s hyperactive immune system,” Dr. Alfano says. “The impulse that helps you heal when you’re sick, of wanting to curl up in bed, may be part of an immune reaction.”

There’s also the fear of recurrence and “survivor’s guilt,” says Dr. Ganz, especially for those who have seen fellow patients die. “In my two years after treatment,” says Beth Silverman, 32, a breast-cancer survivor in Baltimore, “I buried 30 or 40 friends I made in support groups and through cancer networks.”

Other cancers

Of the 12 million U.S. survivors, 25 percent have ended up having multiple cancers—not just recurrences but, rather, entirely different cancers, according to Doug Ulman, president and CEO of Livestrong. While in college, Ulman was diagnosed with chondrosarcoma, a cartilage tumor; later, he faced two separate incidences of melanoma. Whether he had a susceptibility to cancer or whether the diseases were related to his treatments is unclear. “We don’t know what roles genetics and treatment play, but we know treatment has an impact,” he says.

As research on cancer survivors proceeds, solutions to their problems will likely be discovered or devised. For now, Dr. Alfano says, “physicians shouldn’t talk about patients going back to normal after treatment. We want to help people find the best ‘new normal.‘”

“Oncologists never use the word ‘cured’ anymore,” Silverman adds. “They say there is ‘no evidence of disease,’ or what we survivors call ‘NED.’

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CONTACTS AROUND THE WORLD

Overseas cancer organisations


This is a list of cancer organisations in countries outside the UK, provided by Cancer Research UK, and other organisations.

I haven’t contacted ALL of these organisations, so please check!

I use this list frequently –

  • when I receive a press release about some research carried out in another country, I go through to relevant organisation and ask if they have any info.
  • when a reader asks about something happening in another country;  recently I probably saved one reader over £4,000 – he had had official-looking  and reassuring correspondence with someone – who, thanks to contacts with cancer society in their country, turned out to be a complete charlatan.
  • you can check with the relevant society if you want more information, and verify if it is accurate

Organisations very enormously in size, so if you ask for help take this into account.  Smaller organisations might be a one-person office supervised by an unpaid volunteer, so don’t ask for a huge amount of information that could take a long time to answer.

Unsure of where to go?  Start with http://icisg.org/                                                                          This is an international organsation of major cancer information services from around the world.
The Cancer Council Australia
Provides telephone, email and online information in English for people with cancer.                                                          website: www.cancer.org.au
Email: info@cancer.org.au
Phone: (02) 8063 4100
Helpline: 13 11 20 (Mon-Fri 9.00am-5.00pm – local rate)

The Barbados Cancer Society
Provides counselling to patients and their relatives, and has a hospice outreach program to support patients at their homes. Also provides information on early detection and prevention of cancer.                                                                  Phone: (246) 436 8888 or 427 9005
Email: info@barbadoscancersociety.com
Website: www.barbadoscancersociety.com

 

Belgium
Fondation Contre le Cancer (Foundation Against Cancer)
Provides support to people with cancer in French.                                                                                                                               Website: www.cancer.be
Phone: 0800 15 801 (Monday 9am – 7pm, Tuesday to Friday 9am to 1pm)

The Canadian Cancer Society
Provides telephone, email and online information in French and English for people with cancer.                                  Website: www.cancer.ca
Email: info@cis.cancer.ca
Phone: 1 888 939 3333 or (416) 961 7223

China
The Hong Kong Anti-Cancer Society
Provides comprehensive online information in Chinese for cancer patients and their caregivers.

Website: www.hkacs.org.hk
Email: admin@hkacs.org.hk
Phone: (852) 3921 3821

The Cyprus Anti-Cancer Society
Provides support and care for people with cancer at their homes. Information provided in Greek and English. The website includes local contact telephone numbers.

Website: www.anticancersociety.org.cy
Email: info@anticancersociety.org.cy
Czech Republic
Liga Proti Rakovine Praha (League Against Cancer Prague)
Provides information to cancer patients in Czech.

Website: www.lpr.cz/
Email: lpr@lpr.cz
Phone: 224 919 732 or 224 920 935
Kræftens Bekæmpelse (Danish Cancer Society)
Provides information for cancer patients in Danish.

Website: www.cancer.dk
Email: info@cancer.dk
Phone: 80 30 10 30

Eesti Vähiliit (Estonian Cancer Society)
Provides information and support for people with cancer. Information on their website is in Estonian, Russian and English.

Website: www.cancer.ee
Email: info@cancer.ee
Phone: 0 800 2233 (Mon-Fri, 10.00am-12.00; 6.00-8.00pm)

Syöpäjärjestöt Finnish Cancer Organisations / Cancer Society of Finland
Provides information and support for people with cancer in Finnish, Swedish and English.

Website: www.cancer.fi
Email: society@cancer.fi
Phone: 0800 19414 or (358) 9 135 331

France
Fédération Nationale des Centres de Lutte Contre Le Cancer (FNCLCC)
(The National Federation of French Cancer Centres)
Provides online information for people with cancer in French.

Website: www.fnclcc.fr
Email: infocom@fnclcc.fr

Ligue Nationale contre le Cancer (National League Against Cancer)
Provides information for people with cancer in French.

Website: www.ligue-cancer.asso.fr
Email: aidea@ligue-cancer.net
Phone: 0810 111 101 (Monday to Friday, 8am to 8pm)

Cancer Support France
Provides support in English to people in France.

Website: www.cancersupportfrance.info
Forum: www.csf-forum.org
Email: cancersupportfrance@orange.fr
Phone: 05 45 893005 (10.00 to 12.30. They also have an answer phone and aim to return calls within 24 hours)

Deutsche Krebshilfe (German Cancer Aid)
Provides advice and information for people with cancer in German, including booklets that you can download from the website.

Website: www.krebshilfe.de/
Email: deutsche@krebshilfe.de


Greece
The Hellenic Cancer Society
Provides information and support for cancer patients. The information on their website is in Greek and English.

Website: www.add.gr/org/hc/index.html
Open Telephone Line: (210) 64 01 200 (8.00am – 8.00pm, for cancer information)

Krabbameinsfélagið (The Icelandic Cancer Society)
Provides information and support to people with cancer. The information on their website is in Icelandic.

Website: www.krabb.is
Phone: (354) 540 1900
India
Cancer Patients Aid Association
Provides information and support to people with cancer. Has branches in several cities; website has local contact details. Information on their website is in English.

Website: www.cpaaindia.org
The Indian Cancer Society
The society provides food, medicines, transport, prostheses and counselling to cancer patients. It has branches and affiliated groups in many towns and cities. Information on their website is in English.

Website: www.indiancancersociety.org/
Email: info@indiancancersociety.org
Phone: 91-22-2202 9941 / 2202 9942

The Irish Cancer Society
Provides support and information in English to patients with cancer.

Website: www.cancer.ie
Email: helpline@irishcancer.ie
Helpline: 1 800 200 700 (Mon-Thurs 9.00am-7.00pm; Fri 9.00am-5.00pm)
Israel Cancer Association
Funds research and provides information and support to cancer patients. Information is provided in Hebrew, English, Arabic and Russian.

Website: www.cancer.org.il/
Phone: 1 800 599 995 or (972) 3 5721616

Italy
Associazione Italiana Malati di Cancro (AIMaC)
Provides information in Italian and support to cancer patients, their families and friends.

Website: www.aimac.it
Email. info@aimac.it
Phone: 840 503579 (free)

Jamaican Cancer Society
Provides information and support for people with cancer.

Website: www.jamaicacancersociety.org
Email: mail@jamaicacancersociety.org
Jordan
King Hussein Cancer Center (KHCC)
A cancer treatment centre that also provides online information in English about common types of cancer. Most of the information on their website comes from links to the US National Cancer Institute website.

Website: www.khcc.jo
Email: info@khcc.jo
Hotline (free): 0800 22 66 2 (8am to 5pm, Saturday to Wednesday)

Lebanese Cancer Society
A professional and volunteer organisation that has a website in English. Cancer information on the website is provided via links to other organisations, mostly in English and French.

Website: www.cancer.org.lb/
Email: lcs@cancer.org.lb
Phone: (961) 1 217342

Malaysia
Majlis Kanser Nasional (MAKNA) (National Cancer Council)
Provides support and information for people with cancer. They also have some cancer information in English on their website.

Website: www.makna.org.my
Email : makna@makna.org.my
Phone: (60) 3 2162 9178
Persatuan Kebangsaan Kanser Malaysia (National Cancer Society of Malaysia)
Provides an email, telephone and drop-in service for people with cancer in Bahasa, Melayu, English, Chinese and Tamil. Also runs support groups, and offers medical services.

Website: www.cancer.org.my
Email: contact@cancer.org.my
Phone: (60) 3 2698 7300

Cancer Association of Namibia
Provides information and support for people with cancer including care at home and financial advice. Also provides information through email and telephone. The information on their website is in English.

Website: www.can.org.na/
Email: canwdh@africaonline.com.na
Phone: (264) 61 237 740 or (264) 61 237 741

Cancer Society Nepal
Provides information and support for people with cancer

Website: www.cancersocietynepal.org.np
Email: csninfo@cancersocietynepal.org.np
Telephone: 977 016 22 5663
Netherlands
KWF Kankerbestrijding (The Dutch Cancer Society)
Provide online and telephone information in Dutch for people with cancer. There is also some information about the organisation in English on the website.

Website: www.kwfkankerbestrijding.nl
Email: info@kwfkankerbestrijding.nl
Phone: 0800 022 66 22


New Zealand
Cancer Society of New Zealand
Provides funding for research into the causes and treatment of cancer. They provide information in English and support for people with cancer and their families. They also have an online chat forum.

Website: www.cancernz.org.nz
Email: admin@cancer.org.nz
Phone: 0800 CANCER (0800 226 237)

Kreftforeningen (Norwegian Cancer Society)
Provide support and information for cancer patients in Norwegian.

Website: www.kreftforeningen.no
Email: servicetorget@kreftforeningen.no or kreftlinjen@kreftforeningen.no
Cancer Helpline: (47) 800 48 210 (Monday to Wednesday, 9am to 8pm, Thursday and Friday, 9am to 3pm)

Liga Portuguesa Contra o Cancro (The Portuguese Cancer League)
Provides information and support to people with cancer. All information in Portuguese.

Website: www.ligacontracancro.pt
Email: info@ligacontracancro.pt or linhacancro@ligacontracancro.pt
Phone: 351 217 221 810 or 808 255 255

Liga Româna de Cancer (The Romanian Cancer League)
Provide online information about cancer in Romanian and English.

Website: www.romaniancancerleague.org/
Email: office@romaniancancerleague.org
Phone: 40 21 314 69 33
Saudi Arabia
Saudi Cancer Society
Provides information and support for people with cancer. Information on their website is in Arabic and English.

Website: www.saudicancer.com
Phone: (966) 1 440 2006 or (966) 1 440 1771

Serbian Society for Fight against Cancer
Provides information about the prevention and treatment of cancer.

Website: www.serbiancancer.org/
Email: serbca@ncrc.ac.yu
Phone: +381 11/2656-386

Singapore Cancer Society
Provides free public cancer screening services, financial assistance, rehabilitation, support and hospice home care for cancer patients. Information on the website is in English.

Website: www.singaporecancersociety.org.sg/
Email: enquiry@singaporecancersociety.org.sg
Telephone: 65 6221 0133

Liga Proti Rakovine (League Against Cancer in Slovakia)
Provides support and information in Slovakian.

Website: www.lpr.sk
Email: lpr@lpr.sk
Phone: 421 02/52 96 51 48 (Monday to Friday, 9am to 1pm & 2pm to 4pm)

The Cancer Association of South Africa (CANSA)
Provides support and information services in English for people with cancer.

Website: www.cansa.org.za
Email: info@cansa.org.za
Helpline (free) : 0800 22 66 22 (Mon-Fri 8.00am-4.30pm)

Spain Asociación Española Contra el Cáncer (AECC)
Provides online and telephone information in Spanish for people with cancer.

Website: www.aecc.es
Phone: 900 100 036 (cancer information)
Email: informacion@aecc.es

José Carreras Leukaemia Foundation

Website: www.fcarreras.org
Provides information and support for leukaemia patients. The website is available in English and also in Spanish and Catalan.
Cancerfonden (The Swedish Cancer Society)
Provides information and support in Swedish.

Website: www.cancerfonden.se
Email: info@cancerfonden.se or infostodlinjen@cancerfonden.se
Phone: 020 59 59 59 (Monday to Friday, 9am to 1pm)

Krebsliga Schweiz (Swiss Cancer League)
Provides online and telephone information in German, French and Italian.

Website: www.krebsliga.ch/
Email: helpline@krebsliga.ch
Phone: 0800 11 88 11 (Monday to Friday, 10am to 6pm)

National Cancer Institute of Thailand
Provides information for people with cancer. The information on the website is in Thai.

Website: www.nci.go.th
USA
American Cancer Society
Provides online, email and telephone information for people with cancer in English and Spanish.                                Website: www.cancer.org Help line: 1 800 227 2345

National Cancer Institute
Coordinates, conducts and supports cancer research. They also provide online, email and telephone information in English and Spanish.

Cancertreatment.net – a very friendly-looking website where you can link up with people with same interests.  They have a large section of support links for Breast Cancer survivors.   There are also details of interesting articles for cancer survivors.                                                                                                                                                                                                Website: http://www.cancertreatment.net

Website: www.cancer.gov
Phone: 1 800 4 CANCER (1 800 422 6237) Monday to Friday, 8am to 8pm

http://breast-cancer.supportgroups.com/

Cancer Association of Zimbabwe
Provides information and support for people with cancer

Email: cancer@mweb.co.zw
Phone: 263 (0)4-705522 or 707444 or 707673

Other international cancer organisations

Union for International Cancer Control (UICC)
UICC is the world’s largest independent, non profit, non governmental association of cancer organisations. It is based in Switzerland. UICC brings together a wide range of organisations, including voluntary cancer societies, research and treatment centres, public health authorities, patient support networks and advocacy groups. The website is in English.

Website: www.uicc.org
Phone: (+41) 22 809 1811

Association of European Cancer Leagues (ECL)
ECL was created in 1980 and consists of 27 members. The objectives of the association are to improve communication and to foster collaborative activities between European cancer leagues and organisations that are members of the ECL. The website is in English.

Website: www.europeancancerleagues.org
Email: info@europeancancerleagues.org
Phone: (+32) 2 256 2000
Nordic Cancer Union

The Nordic Cancer Union is a collaboration of five countries to improve cancer control in Scandinavia. Members include Finland, Norway, Denmark, Sweden, Iceland and the Faroe Islands. Their website is in English.

Website: www.ncu.nu/
Email: info@cancerfonden.se or ncu@kreftforeningen.no
Phone: +46 8 677 10 00 or +47 815 70 477

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Expert says current cancer care is 'wasteful, ineffective' and not best for patients

Millions of people now survive cancer, thanks to better detection and treatment.

But in Britain this is placing an increasing demand on the NHS system that deals with aftercare, according to cancer expert Professor Jane Maher.

Writing in this week’s ‘Scrubbing Up’,  she says the current system “is wasteful, ineffective and not the best way to spot many recurrent cancers”.

Follow-up

At the moment, cancer patients who survive initial treatment enter what is called the “follow-up” system – regular appointments to check that the cancer has not returned.

Traditionally, follow-up involves out-patient department visits with a consultant, backed up with diagnostic tests.

But the tradional way of doing things is failing patients.

According to Prof. Maher there is  little evidence that this method is the best way to spot recurrences of cancer, or the other possible long-term health consequences of being treated for cancer.’

Case Study

Gigi would agree with the Professor.  Five years after her initial lumpectomy and course of hormone pills, she is feeling bewildered.  “I find when I go for my check-ups it seems to be a case of ticking boxes.  Right, that patient has been seen.  Next please. And there is no time to ask questions.

Last time I had vague fears.  One always imagines that any ache or pain might – just might – be cancer returning.  I finally maanaged to mention to my doctor that I had a painful arm, and could this be cancer had spread to my bones? He pooh poohed my worries;  but eventually, when I saw another doctor he found that I had a tear in my muscle, and he said that this must have been very painful.  It was, but my original Consultant had made me feel I was worrying over nothing.

Then I have problems ‘down below’.  I found out about a Bowel Cancer Test, but surely this should have been mentioned to me by my Consultant, or an automatic alert from the hospital?  Or even a ‘check sheet’ when I was discharged?  The test was very easy to do, so no problems there.  But – the results show I should go for further investigation.  I have a painful muscle condition which means I should have extra pain relief if anyone mucks about in this area, so I phone the hospital to ask how they treat my type of patient.

‘We treat you just the same as everyone else’ I was told.

This was NOT what I wanted to hear.  So, I start asking questions.

“Will I have a anaesthetic during the colonoscopy?”  This is normal in hospitals in Europe.  ‘No, in fact WE may not even give you a sedative’ says callous nurse.  Really, where do they find them?”

So Gigi is going privately, where she has been assured they know exactly what she requires, and will make sure she gets it.

D-I-Y

Recent work suggests that around 70% of recurrence of breast cancer could be detected either by patients noticing symptoms themselves, or by surveillance testing alone, with a face-to-face appointment if needed.

But this is only possible if patients are helped to understand their illness, can access regular tests and know how and when to contact specialists if problems arise.   Were YOU given any advice when you left hospital about self-testing?  This should be obligatory for everyone.

The current system is just not meeting cancer survivors’ needs.

One in five people living after treatment for cancer will develop long-term emotional, psychological and physical problems that seriously affect their quality of life.

Yet there are few, if any, NHS services specifically for cancer survivors, and the National Cancer Survivorship Initiative is way off reporting its final outcome.

.
Lack of suitable treatment and advice

This not only affects quality of life, but also leads to unnecessary illness that costs the NHS – and the UK – dearly.

It means people can’t get back to work and may need treatment for other conditions caused by cancer or its treatment, coming on months or even years later.  But as Prof. Maher says, “This cannot continue.  The NHS needs to radically transform the way it provides support for patients following hospital treatment”.

Doctors need to be able to assess the level of risk, identify which patients need regular face-to-face appointments and specialist support, and which patients could, given the right tools and skills, manage their own condition.

Fundamental changes in the way that aftercare is provided would be cost effective, both to the NHS and to the wider economy.

Macmillan’s own research shows 90% of survivors have both physical and emotional needs after treatment, with many unable to return to work as a result.

If patients are equipped with information, and understand when they need to see a health professional or when they may need a diagnostic test, this will reduce the need for unnecessary follow-up appointments.

This, in turn, will free up resources which can be reinvested in the new aftercare services for people with cancer. It costs much less to provide a person with the skills and knowledge to self-manage their condition, and provide support if needed from a nurse in the community, than it does to make patients travel to hospital for a follow-up appointment that doesn’t take into account all of the patient’s needs.

Give cancer patients the tools to self-manage, treat us like intelligent human beings, give us effective rehabilitation services that support us getting back to work, and this would mean:

  • fewer people claiming benefits
  • more people paying taxes
  • employers retaining experienced staff.

Which is a win, win, win situation for everyone.

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Is this book on Inflammatory Breast Cancer any use? Or will it be useless?

If you are going to spend your hard-earned cash on

this book, will you like it?

Or find it useless – flippant – superficial?

Well, if you are a patient, I hope you will find helpful, useful information – with some humour, in this layman’s book on Inflammatory Breast Cancer.

And if you are one of my favourite nurses – you will have a wry smile at the way I talk, and thank heaven not all patients were like me!

This is written from a patient’s viewpoint.  So don’t be shocked by the nicknames I gave some of my medics.  Or the fact that I litter the book with names of commercial companies that made clinically-trialled products that helped me.  Delicate souls will be horrified by the use of company names, but doctors and nurses have no hesitation on giving out names of drugs, and those are made by companies who measure their profits in BILLIONS – not ordinary millions.  So why shouldn’t we be given names of products that can help with the awful side effects of these drugs?

If you are a doctor, and treated as a Higher Being,  I might not give you due deference you expect  – especially if you were ‘Dr. 30-second’ or ‘Pompous Professor’.

And if you like to blind us with science, you won’t like the 17 page Glossary.   I have just been reading a book ‘designed for patients’ which thinks it can get by with an eleven- yes, 11 – word Glossary.

If you are a nurse, this is NOT a medical text-book.  You will scream at the way I re-name medical procedures, and question the way You are taught to treat us.  And ask why a Multi-disciplanary Team NEVER includes the most important member: the patient.

Cancer is a frightening condition;  Inflammatory Breast Cancer more so than many.  So you must excuse us if we get stroppy, and use black humour to keep us going.

You and the Team are there to give us the facts – I tried to remember what I was feeling at the time – and the sometimes silly things that were bothering me, when I should have reacted differently according to text-books and nurses’ training.  But then we are human, so sometimes don’t behave the way we are told to.

And TLC is sometimes totally forgotten in medical training – but we respond to this far better than being told  “YOU are only a patient”.

I have NO medical training, but justify writing this book because I can call myself an ‘Expert Patient’.

Has this been endorsed by a British Hospital? Whew!  After comments about some hospital treatment I received, and after the things I have said about superior treatment in European hospitals –  not B  likely!

But if you like Christine Clifford Beckwith’s black humour and her take on situations cancer patients find themselves in (well, you’ve got to laugh or else you would cry), then I hope you will like this book.

http://www.amazon.co.uk/Inflammatory-Breast-Cancer-Explanation-Support/dp/184829039X/ref=sr_1_1?s=books&ie=UTF8&qid=1283185964&sr=1-1

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Latest information from Fred Hutchinson Cancer Research Center

Fred Hutchinson Cancer Research Center
Image by camknows via Flickr

Fred Hutchinson Survivorship Program

The Survivorship Clinic at SCCA offers treatment, education, and support in the years after cancer treatment is completed.

Their Survivor website offers interesting and useful articles on a variety of topics;  some of latest posted on their website

http://www.seattlecca.org/fred-hutchinson-cancer-research-center-survivorship-clinic.cfm

deal with the following topics:

Incidentally, I mention the research carried out at this centre in other posts on this website – it is one of world’s foremost research centres, and has produced a lot of helpful information for patients.

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Lymphoedema treatment just got more accessible

How to apply for NHS funding

Two years ago it took several letters and an approach to my MEP, before I got my first course of MLD (Manual Lymphatic Drainage) funded by the PCT.

Today, I don’t know if they saw my name at top of paper, or if it has genuinely got easier to get funding, but £1,000 of further treatment has just been authorised.

Here’s what I did to get this approved :

1.  Found therapist who is trained in Vodder method.  The one I chose was recommended by the Lymphoedema Support Network, and this is important as the therapist needs to have all the approved qualifications, otherwise PCT will refuse funding.

2.  Went to see therapist Sossi Yerissian, who gave me an in-depth hour long interview, examined me, then told me what she could do for me.   Sossi wrote a letter for me  describing what treatment she advised.

3.  Went to see my doctor at the local NHS Practice and handed over Sossi’s letter.  She wrote off  asking for funding for the course of treatment and included Sossi’s letter for evidence.

4.  There was a delay of several weeks, so I phoned commioners Business Manager to ask what was causing this hold-up. It was a matter of two small items missing from the doctor’s letter, and I was able to fill these in over the phone.

5. Ten days later a letter arrived they would grant funding for the above treatment”.

6.  The whole process actually took two months.

So just ASK!

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