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CANCER OF UNKNOWN PRIMARY FOUNDATION

OnHealthy

Useful contacts and publications

Contacts

Jo’s friends like:

About Health. This US website includes cancer information.

Bereavement counselling in the UK. See Cruse

Cancer Care. Another US website. Very helpful on side effects of chemotherapy, amongst other resources.

Cancer emergency response tool. An ‘app’ for Android phones to help those on chemo (developed by Dr Richard Osborne).

Cancer Options. Cancer Options is a private consultancy where (for a fee) you can obtain guidance on orthodox, complementary and integrative cancer treatments and therapies. Services are available through the charities Yes to Life and The Holly Eatwell Trust, for those that would like to explore an integrative approach but may not have the financial resources.

Cancer Research UK. Their site has a wealth of information about cancer and research. CancerHelp UK  is the patient website of Cancer Research UK. They have a specialist nurse helpline, and a database of cancer trials in the UK.

Carers Direct (NHS). Carers Direct is a national information, advice and support service for carers in England. Available online and as a free, confidential helpline seven days a week on 0808 802 0202, it provides accurate, relevant information for carers and those who support them.

Counselling Directory. The purpose of the site is to enable those in distress to find a counsellor close to them and appropriate for their needs.

Insure Cancer. It can sometimes be problematic for cancer patients to get travel insurance. We pass on the existence of this site but make no particular recommendation.

Macmillan Cancer Support. This large UK charity seek to improve the lives of people affected by cancer by providing practical, medical, emotional and financial support. (In 2008 Cancerbackup became part of Macmillan). They provide information on cancer and its treatments through a website and telephone support manned by nurses. They also publish useful free booklets. Jo’s friends collaborated with Macmillan on the booklet Understanding Cancer of Unknown Primary (ref: MAC11689) which can be found and ordered here . We would recommend also their book  entitled: Recipes. This advises on poor appetite and weight loss as well as giving details of nutritional supplements and snacks and recipes.

Marie Curie Cancer CareThey provide free nursing care to terminally ill patients to allow them to die at home.

Maggie’s Centres. The aim of Maggie’s Centres is to help people with cancer to be as healthy in mind and body as possible and enable them to make their own contribution to their medical treatment and recovery. There are patient “havens” in friendly and innovative buildings close to major cancer hospitals in: Edinburgh, Glasgow, Dundee, Highlands, Fife, Lanarkshire, Nottingham, Oxford, Cambridge, London, Cotswolds, Swansea. (They overcome Plato’s concern, more than 300 years BC, that in the treatment of the human body physicians separate the soul from the body.)

National Council for Palliative Care explains Palliative Care Services in the UK.

Penny Brohn Cancer Care. (The new name for Bristol Cancer Help Centre). The Bristol Approach is a combination of complementary therapies and self-help techniques. Their work is designed to fit alongside medical treatment.

Sarcoma UKThey offer information & support about Sarcoma and its treatment in the UK. A small number of those initially diagnosed as CUP may be found to be Sarcoma.

Sue Ryder Care. Sue Ryder specialise in palliative and neurological care maximising and supporting patient choice and independence.

Travel insurance companies for people undergoing cancer treatment. We have no particular recommendations but know that this is often problematic.  Have a look at: insurecancer.com; free-spirit.com; avanti.co.uk;  all cleartravel.co.uk; insurancewith.com; freedominsure.co.uk; jdtravelinsurance.co.uk; world-first.co.uk.

Carers Trust – The Princess Royal Trust for Carers.     The Trust is the largest provider of comprehensive carers support services in the UK.

The Brigitte TrustThe Brigitte Trust offer emotional support and practical help to the whole family when a life-threatening condition is diagnosed, and up to twelve weeks bereavement support. Working in Surrey with a sister organisation, Hospice Home Support in West Surrey/Hampshire.

If you value an organisation or website not listed here that could be of use to others please e-mail us.

 

Useful publications – books, blogs and pamphlets

Jo’s friends like:

Understanding Cancer of Unknown Primary by the Cancer Council of New South Wales, Australia .   This site is very comprehensive.

Servan-Schreiber, David. 2008. Anticancer: a new way of life. London: Viking books. (£8.72 paperback on Amazon). It details how we can fight cancer by modifying our diet and lifestyle, and explains how this works. See also a website at http://www.anticancerbook.com

What a Jo’s friend says: “It provides valuable info on how diet can target cancer cells. I am a qualified nurse, and have found it to be invaluable. I was diagnosed with CUP in May 2010, and have not had any treatment yet as they cannot find any tumours. However, my cancer markers have halved since starting this diet in June“.

Siegel, Bernie. S. 1999 (paperback £5.99). Love, Medicine and Miracles. NY: Harper Row.

What a Jo’s friend says: “it has really helped me to lose that sense of fear and dread, and I feel much more positive and in control. There are a lot of good positive thinking techniques that I have found really helpful”.

Groopman, J. 2007. How Doctors Think. Published by Houghton Mifflin. (Dr Groopman has also written another book called The Anatomy of Hope, How People Prevail in the Face of Illness published by Random House.)

Page, Christine. R. 1994. Frontiers of health – from healing to wholeness. CW Daniel Co Ltd. (Dr Page has another book also published by CW Daniel in 1998 – Beyond the obvious).

Wick, Mark R. (Editor) 2008. Metastatic carcinomas of unknown origin. USA: Demos.   This is a series of articles about CUP written by clinicians for clinicians. In a field where there is little captured about the subject in one place this is a valuable book. Probably more detailed than most lay people would want.

Coal Face. Clinical psychologist Sidney Bindemann writes a blog about the cancer patient’s ‘journey’, with explanations of treatment such as radiotherapy and chemotherapy, adding some very wise words of advice based on experience.

European Guidelines on treating CUP. Just as we have a NICE Guideline for clinicians in England and Wales, there is a European version. See this article interviewing the lead author (which is written primarily for clinicians).

Managing illness and bereavement.  Pharaoh, Gill. How to manage family illness at home. Bovvering Books, £9.99. The book guides families on practical questions that crop up from diagnosis to bereavement.

 

(If you can recommend a book or website that could be of use to others please e-mail us. If you want to add a brief sentence by way of support we may include it.)