Here you’ll find listed below some websites (I have personally found a few of these extremely useful in my quest for information on Non Hodgkin’s Lymphoma and cancer in general). If you would like to see any additions here, then email meand I’ll add them in for you.
It is split into sections at the moment, but this could change – you never know with me! I’ve also added in a new section that will grow with time. It’s “Other Health Related Sites” – mainly things that I have had experience of or had contact with, ie. gallbladder surgery is a good starting point!
Sometimes links fail (which can be for many reasons as we all know!) – if you come across one that is no longer valid please let me know.
As you know, the Furry Monkey does not endorse ANY site but puts these links here for information only. The choice, as they say, is yours….!
Click on the links to start reading 🙂
| SECTIONS |
| ADVICE AND INFORMATIONHere you will find information on organisations (e.g. Carers Association) which may be of help to you. Also government departments and (if you’re based in Surrey, UK) a few local organisations who can help you with form filling and information on disability. |
| CANCER CHARITIESBoth National and Local Cancer Charities are listed here. |
| CANCER TYPES AND RELATED INFORMATION ABCDEFGHIJKLMNOPQRSTUVWXYZ |
| HOSPITALS AND HOSPICES |
| NON HODGKINS LYMPHOMA SPECIFIC WEBSITES |
| PERSONAL WEBSITES |
| OTHER HEALTH WEBSITES- Arthritis – Complex Regional Pain Syndrome – Diabetes – Gallbladders – General Health – IBS – Lymphoedema – Others |
| WITH THANKS |
| ADVICE AND INFORMATION |
| BBC Guide to Cancer Clear, quality health information from the BBC. This site offers you a look at the forms of cancer, details on treatments available, medical terms explained, and organisations which offer medical and emotional support. Further sources of information are listed too along with factsheets on lung cancer, skin cancer, dietary cancer, men’s and women’s cancers, that you can print off and keep for reference.BiomedicalSearch It has all NIH’s PubMed documents, plus patents and thousands of other full-text journals are being added shortly, which will make it the most comprehensive FREE search around. Well worth a look!Canceradvice.co.uk Managed by Dr Nick Plowman, leading oncologist, London. Covers a range of advice and links.Cancer Face – a Facebook Page to help others…. Jeremy sent me this link to a Facebook page he has set up to help other cancer patients. Check it out and see what is there…!Cancerhelp.org.uk A UK based site (hurrah!) which offers all aspects of cancer, research, clinical trials, specific cancers, living with cancer etc.Carers National Association Provides information and support to any carer by telephone or letter. There are local branches across the UK. 20/25 Glasshouse Yard, London, EC1 4JS 0345 573 369 – Carers Line 020 7490 8818CarersNet Official website of the Coalition of Carers in Scotland – and information network designed for carers, carer groups and organisations, and for people working with carers. Links to other useful carers websites.DAIRS (Disability Advice & Info for Runnymede and Spelthorne) DAIRS offers a free, confidential, independent information and advice service on all aspects of disability to Runnymede and Spelthorne people with disabilities, carers, relatives, friends and professionals. The service is staffed by volunteers, who all have experience of disability, and a paid Manager.12 The Sainsbury Centre, Chertsey, Surrey, KT16 9AG Tel 01932 562102 Minicom: 01932 566622 [email protected]/channel/cancer.html Thanks to Emily for this link after letting me know that cancersource was no longer on the net. This is a good source of all sorts of health information, not just cancer. If you are at all concerned check it out here and then go and see a medical professional about it – better to be safe than sorry!www.healthinsurancesort.com/guide-cancer.htm This excellent resource link came from Samantha, a student of Adrienne Roberts. Although it’s a US site, under the Resource: Cancer page it contains many links to very useful information. Cancer is cancer, no matter where in the world you are, so go and check it out. You never know what you might learn!!!The Langer Group Phil emailed me about this site, excellent resource with free downloadable items to help with your orthotic queries. Also have products available which may help you too.Learning Place Online An interesting website written mainly from the aspect of cancer patients. A jokes section (thanks for the permission to use some of them!), spiritual side of cancer, living with cancer, you name it and it’s there. Go check it out!Healthopedia Online medical encyclopedia, which covers cancer and every other disease you could want or need infomation on. Based in US, but a comprehensive site.Medical Research Council News, research, clinical trials – covering all aspects of health, not just cancer.drugalert.org Erica emailed me about Furry Monkey, being an excellent resource for those living with cancer and their loved ones. True – well one has to blow one’s own trumpet every now and then! However I’d like to reciprocate the link and tell you all about drugalert.org – each year nearly 1.5 million Americans are being harmed by prescription drugs and our site is devoted to giving readers a variety of information on how certain drugs can be particularly dangerous. This site also applies to drugs which are also used in the UK. Side effects of drugs are a big problem worldwide, and something we should all be aware of! Go and check it out for more information to help YOU.Michele Zuzalek – Picczees Michele started developing her product when she became a patient herself. She wanted to create a cover-up garment for patients that would conceal the catheter/picc line in a fashionable way and that would also help to build their self-esteem. Check out all the different options available!National Association of Citizens Advice Bureau NACAB will be able to give you details of your nearest Citizens Advice Bureau or you can look in your local telephone directory for your nearest branch. They are advice-giving agencies aimed at helping with welfare benefits, housing and money problems, family and personal matters, and legal enquiries. Myddelton House, 115-123 Pentonville Road, London N1 9LZ 020 7833 2181National Cancer Alliance The NCA is an alliance of patients and health professionals, their relatives and friends working for improvements in cancer services, treatment and care throughout the UK. PO Box 579, Oxford, OX4 1LB 01865 793 566National Strategy for Carers The first ever by a Government in Britain – sets out what the Government has been doing and what it is going to do.Patient.co.uk An extensive general medical site for cancer information and support for patients, carers, and health professionals. I’ve personally used this many times and it has some good information on it.The Patients Association The Patients Association listens to the concerns of patients and aims to empower them to make informed choices and speak for themselves with confidence and conviction. PO Box 935, Harrow, Middlesex, HA1 3YJ 020 8423 8999 – Patient Line or 020 8423 9111 – AdministrationThe Princess Royal Trust for Carers The Trust exists to make it easier for cares to cope by providing information, support and practical help to carers.Self Help and Support Groups – Patient Information Publications (UK) This site includes an index of UK links to health related self-help and support groups sorted by disease type / medical topic. There is a page of links to cancer related support groups in the UK.Self Help Groups Although not exactly a cancer website, it has a list of self help groups which may help you. Contains details of over 800 self help groups, including nearly 30 cancer groups.UK Self Help Trying to find information about a specific disease or illness? Then check out this site, it has literally hundreds of listings! |
| CANCER ORGANISATIONS |
| Cancerbackup Cancerbackup has now merged with Macmillan Cancer Support.Cancer.gov Allegedly the largest cancer website in the world, based in Washington, USA. Covers everything you could ever want to know…..allegedly!Cancer Research UKMacmillan Cancer Support Macmillan Cancer Support provides care and support for people with cancer at every stage of their illness through Macmillan nurses, Macmillan doctors, building cancer units and a programme of financial help for patients in need. Their phone line offers information, such as details of local support groups, and emotional support. 89 Albert Embankment, London, SE1 7YQ 020 7840 7840 or Macmillan cancerline: 0808 808 2020 Mon – Fri 9am – 6pmMacmillan CancerVOICES Have cancer? Had cancer? Relative, friend, partner or carer of someone with cancer? Use your cancer experience and join our Cancer Voices network to help improve the future of cancer care. Use your cancer experience to help Macmillan and other cancer-related organisations to change the future of cancer care. Becoming a Cancer Voice is a unique and powerful way to make life better for everyone affected by cancerMarie Curie Cancer Care Runs eleven centres (hospices) throughout the UK, and a nationwide Marie Curie nursing service, providing hands-on care for patients in their own homes throughout the day or night, free of charge. 89 Albert Embankment, London, SE1 7TP 020 7599 7777Medicinenet.com General medical site (US based) including a very good search feature for medical terms. A medical dictionary is also available – very handy! Part of the WebMD group. Also has a UK site now in combination with Boots.National Cancer Alliance The NCA is an alliance of patients and health professionals, their relatives and friends working for improvements in cancer services, treatment and care throughout the UK. PO Box 579, Oxford, OX4 1LB 01865 793 566Oncolink A site from the Uni of Pennsylvania which has many sections. Loads of research and clinical trials info and links to other US sites.Rare Cancer Alliance The primary purpose of the organization is to disseminate information and provide support to rare cancer patients. Most members are rare cancer patients themselves, who have had to go through the process of wading through the information (or lack of information) on the internet for their rare cancer.The Royal Marsden Hospital Excellent resource on all aspects of cancer. Loads of information to download when required.WebMD/Boots The UK site of medicinenet.com – has a large section on cancer you might want to check out.World Cancer Research Fund WCRF is dedicated to saving lives by funding cancer research and providing education programmes that expand the understanding of the importance of food and lifestyle choices in the cancer process. Site includes leaflets on specific cancers, cancer prevention and nutrition. |
| CANCER TYPES AND RELATED INFORMATION |
| All items in this section are general cancer organisations which are listed alphabetically to make it easier to find. You will notice some are duplicated (Non-Hodgkins Lymphoma for example) as they fit into different sections.If you would like more specific information about a certain type of cancer, please let me know as I may just have the details for you in my ever growing Support Group Listing! This list is ever changing and growing, so please bear with me. Thank you.NOTE: Please check with your own Medical Professional(s) before considering or undertaking any alternative treatments. |
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| American National Cancer Institute A US based site, but cancer is cancer, no matter where in the world you are located. A comprehsive site. Also includes complementary medicine, note this is NOT alternative medicine.American Society of Clinical Oncology Another US based site, but has treatment protocols and drugs explained.A New Approach To Cancer Promotes the positive benefits of holistic and self-help methods and can refer people to a wide network of holistic practitioners, clinics and self-help groups in the UK. Healer counselling, homeopathy, hypnotherapy, massage (therapeutic and remedial), nutrition, osteopathy, and reflexology. St Peters Hospital, Guildford Road, Chertsey, Surrey KT16 0PZ Freephone 0800 389 2662 01932 874 349Anal Carcinoma There are lots of national charities who have information on this type of cancer. I found this one which gives you a LOT of useful information and have personally looked up NHL to see what it says!Asbestos News Asbestos News provides medical and legal information about mesothelioma and asbestos exposure.I know quite a few Mesothelioma patients use the Furry Monkey site for information, so this link might help you with information.The Asbestos and Mesothelioma CenterThe Asbestos Cancer & Mesothelioma Cancer Resource Center Molly emailed me regarding the above site. Not only does it have a huge range of information (2200 pages at the last count!) but they are Oncologist reviewed and have accompanying videos on many of the pages, for those who may be hard of seeing or who want to utilize the ease these videos provide.Asbestos Compensation Claims Aaron emailed me about this site, which although it is a Solicitors, they do have a very good detailed site for Asbestos related exposure. They have divided the material on the website into asbestos background information, the symptoms and treatment of asbestos industrial diseases and an outline of the asbestos compensation process. In addition, there is an asbestos news feed that will be updated regularly with developments in relation to asbestos compensation and treatments.Asbestos.net Asbestos.net, a comprehensive resource on asbestos and its devastating effects, including mesothelioma, asbestos cancer, and other asbestos-related diseases.Asbestos Victim Advice (UK) This site was sent through to be by Grace, so thanks for that Grace. It is unusual because it is UK based, and it is also a small firm. Their site contains loads of useful information if you are looking for further help on this disease. Well worth a look see!Association of Community Health Councils for England and Wales Community Health Councils (CHC) act as the ‘watchdog’ body that monitors the NHS services you receive and is the consumer’s voice to ensure that your needs, views and concerns are being considered. They provide useful leaflets, information on local services, hospices, self-help groups. CHCs will also help you to enquire/complain about your care and treatment.Association of Cancer Online Resources Offers access to mailing lists, treatment options and clinical trials information. US based site. |
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| Bladder Cancer Another general site, useful information as usual from this website. If you want more detailed information go to the National UK charities for further information.Anthony Nolan Bone Marrow Trust The Anthony Nolan Research Centre runs the world’s largest register of bone marrow donors. The donors are fully tissue typed for matching with people waiting for marrow. All donors are volunteers. Anyone wishing to be a donor should contact the Donor department.Bone Cancer Reseach Trust Bone cancer, be it primary or secondary, here’s the information you need. I have primary bone Non-Hodgkins Lymphoma so come into this category indirectly I think! All information is good when it is correct!Bowel Cancer UK Raising awareness, saving lives is their strapline. This applies to any cancer. Do you know the symptoms of bowel cancer? Find out now what they are and what you should do if you have any concerns.Brain Tumour.org Any tumour, anywhere in/on the body is a scary time. The brain tumor experience can be a journey into an unknown land filled with uncertainty. Gathering information about brain tumors can help you understand your options and, in the process, feel more in control.Brain Hospice.com This might not be a site that you would want to willingly check out, however this time comes for all of us, whether we have cancer or not. I found it a great help to know what to expect at “that time” when good friends/relatives are in the position. It puts your mind at rest to know what is ‘normal’ and that everything, although it is never going to be OK, will be better for knowing about it.Breakthrough Breast Cancer This site helps fight breast cancer through research and awareness. Does lots of fundraising and you will see them everywhere! Very very pink site!!!!British Bone Marrow Donor Appeal (BBMDA) The BBMDA works with the National Blood Authorities in England, Wales and N Ireland to compile a national computerised register of bone marrow donors. Anyone wishing to be a donor should contact their local blood transfusion service. You can find out more from the BBMDA website, or email enquiries to them. The telephone number is an answerphone, with a recording directing you to the website. You can also leave a message. PO Box 2022 Thornbury, Bristol, BS35 3WA 01454 412426 (recorded message) [email protected] Society of Bone and Soft Tissue Pathology Mainly for Pathologists, other Physicians, Clinical scientists and Pathologists-in-training but there is some useful links here to check out! |
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| Cancer Care Society Offers free, confidential counselling, emotional support and practical help for anyone whose life is affected by cancers.Cancer Comic Strip Suze emailed me regarding her Blog and admitted to unashamedly stealing a joke from my site. Thanks for being so honest Suze and the link is here for all to share with you!Cancer Help UK Written in plain English for people with cancer & their carers.Cancer Helper Cancer information including treatment options, symptoms and more.Cancer Index An extremely comprehensive and well-resourced site with a wealth of information on cancers and links to a wide range of other sources of information.Cancer Info A useful website for anyone looking for information on all types of cancer. Includes lots on Non-Hodgkin’s Lymphoma which is of special interest to moi of course!Cancerline UK A resource website for cancer networks and mult-disciplinary teams (MDTs) working in primary and secondary care. Patients and carers may also find the website of great value, and patient leaflets on various topics are included.Cancerlink Provides emotional support and information. Over 750 support and self-help groups nationwide. Cancerlink is part of Macmillan Cancer Relief. 89 Albert Embankment, London, SE1 7UR 020 7840 7840 [email protected]Cancer Research UK Cancer Research UK was formed from the merger of The Cancer Research Campaign and The Imperial Cancer Research Fund. It is the foremost cancer charity in the UK and the largest cancer research organisation in the world, outside the USA. Cancer Research UK also supports the CancerHelp UK web site and is responsible for developing and maintaining the site’s Clinical Trials Database. P.O. Box 123, 61 Lincoln’s Inn Fields, London WC2A 3PX 020 7242 0200Cancer Survivors If you’ve had cancer, you are one of these….! Show this site your support by clicking on the name above and registering. The more people that join, the more of us that can share the support of ‘living with cancer’ post treatment. It doesn’t just end once the treatment has ended does it…?cancerwarriors.net Interesting info on lots of cancers, including cancer survivor stories….there are lots of us around….have a read.CancerWeb Information available on many different aspects of cancer, investigation and treatment.Cervical Cancer Jo’s Cervical Cancer Trust (Jo’s Trust) is the only UK charity dedicated to women and their families affected by cervical cancer and cervical abnormalities. Their aim is to offer information, support and friendship to women of all ages, to help them to understand the importance of cervical screening, and to provide our own personal brand of support if their screening shows up abnormalities or if they are diagnosed with cancer.ChemoCare Chemotherapy Drugs and Side Effects Information – Scott Hamilton’s chemotherapy site offers the latest chemo information for cancer patients and their families, caregivers and friends. Outlines all you should know about chemotherapy and cancer treatment.Childhood Eye Cancer Trust (Retinoblastoma) The Childhood Eye Cancer Trust (CHECT) is a UK wide charity for families and individuals affected by retinoblastoma. We offer support and information, fund research and raise public awareness of this rare cancer. |
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| Drugwatch.com A site well worth having a look at. It’s a US based one, but medication is medication the whole world over. Absolutely chock full of useful information on any medication you may be taking. Have a read through and make yourself aware of what it can do to your body! |
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| PLS Medical (in this section because it involves Feet!) Kevin has just emailed me from PLS Medical as they are updating their website. If anyone would like to buy their products, mention the Furry Monkey and you’ll get 10% off – well worth a mention then! 🙂 |
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| Gallbladder Cancer The British Liver Trust is the national charity working to reduce the impact of liver disease in the UK through support , information and research. Understanding Genetics This resource has been developed to illustrate the impact and utility of genetics on real life health care and to help practitioners gain more understanding of genetics in professional practice.GIST GIST stands for GastroIntestinal Stromal Tumour. A rare condition, but like PBNHL, you are not alone.Vaginal Cancer (Gynaecological) Gynaecological cancers are the world’s fourth largest cancer killer of women. Every year a million women are diagnosed with a gynaecological cancer worldwide. In the UK, 18,000 women are diagnosed and nearly 7,500 women die every year. And yet, awareness and funding of gynaecological cancers remains low. |
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| Health Library: Cancer (Talking About Cancer: A Kids Guide) I received an email from Katie in the USA who was looking for resource pages for her school students project for the parents about cancer in kids. They found this page and thought it would be useful to add to my site – they’re right – so here it is! If cancer is explained to kids, it will empower them and hopefully it won’t be frightening. Helping children find ways to share their feelings and ask questions is also important when dealing with this sensitive topic. |
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| I can Magazine I first became aware of this magazine in the Chemotherapy Suite at UCH London. It has lots of useful articles and explanations of treatments and tests. I only read this when I see it at UCH, I’ve tried getting a copy of my own more than once, but no one ever gets back to me. See if you have more luck than me!International Society of Bone and Soft Tissue Pathology Mainly for Pathologists, other Physicians, Clinical scientists and Pathologists-in-training but there is some useful links here to check out!Institute of Cancer Research UK This is not a self help group but their web site provides links to many cancer support and information resources for patients and carers. Includes Everyman – action against male cancer – the Institute of Cancer Research’s campaign to raise awareness of testicular and prostate cancer. |
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| James Whale Fund for Kidney Cancer The James Whale Fund for Kidney Cancer is the UK’s leading specialist kidney cancer charity. It seeks to help reduce the harm caused by kidney cancer by increasing knowledge and awareness, providing patient information and by supporting research into the causes, prevention and treatment of the disease.Jo’s Cervical Cancer Trust Jo’s Cervical Cancer Trust (Jo’s Trust) is the only UK charity dedicated to women and their families affected by cervical cancer and cervical abnormalities. Their aim is to offer information, support and friendship to women of all ages, to help them to understand the importance of cervical screening, and to provide our own personal brand of support if their screening shows up abnormalities or if they are diagnosed with cancer. |
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| James Whale Fund for Kidney Cancer The James Whale Fund for Kidney Cancer is the UK’s leading specialist kidney cancer charity. It seeks to help reduce the harm caused by kidney cancer by increasing knowledge and awareness, providing patient information and by supporting research into the causes, prevention and treatment of the disease.Kidney Research UK Right now, the lives of over three million people in the UK are threatened by chronic kidney disease. To fund life-saving research into kidney disease, to improve the quality of life of those with kidney disorders and to increase public awareness of kidney health please help the Kidney Research UK charity. |
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| National Association of Laryngectomee Clubs The National Association of Laryngectomee Clubs connects the many clubs which exist all over the country. Although they have no internet site you can write to them via that old fashioned thing called “snail mail”. NALC, 6 Rickett Street, Fulham, London SW6 1RULearning Place Online An interesting website written mainly from the aspect of cancer patients. A jokes section (thanks for the permission to use some of them!), spiritual side of cancer, living with cancer, you name it and it’s there. Go check it out!The Leukaemia Care Leukaemia CARE exists to provide vital care and support to all those whose lives have been affected by Leukaemia, lymphoma, myeloma and the allied blood disorders. Our work extends to the welfare of families and carers, as well as that of patients themselves. Quite simply…’supporting a quality of life for all’One Birch Court Blackpole East Worcester WR3 8SG Helpline: 08088 010 444 Tel: 01905 755977 email: [email protected]Leukaemia and Lymphoma Society (USA) A national voluntary health agency dedicated to curing leukemia, lymphoma, multiple myeloma, and Hodgkin’s disease. The web site includes details of the 58 chapters of the society, information booklets, patient services, research etc.Leukaemia and Lymphoma Research Our life-saving research is focussed on finding causes, improving diagnosis and treatments, and running groundbreaking clinical trials for all blood cancer patients. Blood cancers including leukaemia, lymphoma and myeloma affect people of all ages from newborns to grandparents. We need to be sure we reach all those touched by leukaemia, lymphoma and myeloma and give them the best possible chance of survival.Leukaemia Research Fund The Leukaemia Research Fund raises funds for research into causes and treatment of leukaemia, myeloma and lymphoma. Provides a patient information service and produces a booklet on lymphoma and treatment. 43 Great Ormond Street, London, WC1N 3JJ 020 7405 0101The British Liver Trust The British Liver Trust is the national charity working to reduce the impact of liver disease in the UK through support , information and research.Roy Castle Lung Cancer Foundation Once considered a ‘man’s disease’, lung cancer is now the biggest cancer killer among women in the UK, causing around 13,500 deaths each year – more than breast and bowel cancer combined. The incidence of lung cancer in men has decreased. Watch out for passive smoking!!!!Fightmesotheliomacancer.com (also deals with Lung cancer) Useful guide in researching Mesothelioma Cancer, Treatments such as MRI scans, CT scans or Positron Emission Tomography (PET), Lung Transplants, Radiation Therapy, Chemotherapy, Palliative Care and more.Lymphoedema.co.uk Lymphoedema is a very common problem – causing swelling of legs, arms and sometimes the body. Often over-looked in the UK, the aim of this web site to to inform people about this condition and what treatments are available to those suffering from Lymphoedema.Lymphoedema People A very helpful site from Pat O’Connor specially created for and by people with the medical condition known as Lymphoedema. Lymphoedema is a condition that occurs from a damaged or dysfunctional lymphatic system. There are two different types of lymphoedema, primary or secondary. This site explains everything you could want to know I think!Lymphoedema Support Network The Lymphoedema Support Network (LSN) is a national UK charity which provides information and support to people with Lymphoedema. Lymphoedema is not a well documented condition. (I have this as a side effect of radiotherapy and it continues to this day). This group can offer support, help and information to those affected by lymphoedema due to cancer or other causes.Steve Norton – MLD Instructor/TrainerA very informative site even if you aren’t training. Recommended by Jan Eversfield my Lymphoedema Expert and a lovely knowledgeable lady. Thanks for making me feel a lot better, specially after my appt with Dr C which really deflated me. Steve has been working as a medical massage therapist since 1986, and is Nationally Certified. Steve received additional training in Complete Decongestive Therapy at Lerner Lymphedema Services P.C. in 1993. He went on to become the Chief Therapist of Lerner Lymphedema Services, P.C. clinics in Princeton, NJ. and New York City from 1994-1999. Additionally, Steve has been an assistant instructor with Lerner Lymphedema Services Academy of Lymphatic Studies under the direction of Robert Lerner, MD.UK Lymph.com On this site you will find some basic information about Lymphedema, treatments that are currently available together with comments from sufferers on how effective they have found them to be, latest news on the fight against Lymphoedema, information on the Lymphoedema Support Network (LSN), the UK charity under which the East Kent Lymphoedema Support Group operates, a message board for visitors, and links to other sites that might be of interest to you.British Lymphology Society The British Lymphology Society (BLS) is a multi-disciplinary group of health care professionals and other interested parties directly involved in the management of lymphoedema or interested in furthering the work of the Society.Lymphoma Association Provides information and emtional support for lymphoma (Hodgkin’s and Non-Hodgkin’s lymphoma) patients and their families. Literature, a newsletter and videos available. Network of helpers with experience of the disease. Groups in some local areas. P O Box 386, Aylesbury, Buckinghamshire, HP20 2GA 01296 619400 (Freephone Helpline 08 08 808 5555) Mon-Fri 9am-5pmLymphoma and Leukaemia Support GroupThis is a UK based support group for Lymphoma and Leukemia. They offer support and information and have a local group meeting in Nottingham.Lymphoma Information Network Lots of useful information on Lymphoma, specially the rare Primary Bone Lymphoma which I have.Lymphomanet.orgAndrew has emailed me about his new website on Non-Hodgkin’s Lymphoma. Well done Andrew – the more info out there the better! It aims to help improve communication about Non-Hodgkin’s Lymphoma and its treatment. Non-Hodgkin’s Lymphoma is a complex disease, not often in the public eye. Yet treatments are available, and many people with certain types of the disease can be cured. Others may enjoy relatively long periods of time with few, if any, symptoms. Lymphoma-net.org contains a wealth of background materials that patients and carers can refer to in their own time, helping them to have better-informed discussions about Non-Hodgkin’s Lymphoma and its treatment.Lymphoma Research Foundation I personally found this Association extremely helpful and they provided me with a lot of very useful information, even with american spellings! The California office is mainly for Patient & Professional Education, Services and Support. The New York office deals mainly with Public Policy, Research Grants, Finance and Development. (LRF), 8800 Venice Boulevard, Suite 207 Los Angeles, CA 90034 (310) 204-7040 or (800) 500-9976 or 111 Broadway, 19th Floor New York, NY 10006 (212) 349-2910 or (800) [email protected]Lymphoma Support and Research (Australia) Tracey Winton has just told me about this site now that she has just let it loose on the world. This group was started by her Mum and another sufferer and has been the driving force in them becoming incorporated which allows them to go to the next level, the current board are all sufferers at different stages of the disease. The more people that are aware of this disease the more effective the group will become. The aim is for the association to go Australia wide with groups already established in WA, Vic and NSW so it is no small task as you can imagine.Lymphomation.orgA very detailed site on Lymphomas recommended by Anjou – thanks for this. It’s one I’ve checked out in the past but hadn’t listed! |
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| Melanoma Melanoma is the most dangerous form of skin cancer. In its advanced state, it can cause serious illness and even death. Fortunately, melanoma rarely strikes without warning. Learn how to identify melanoma, how it spreads and what treatments are available.Melanoma Stages and other useful info Lots of National UK Charities have information on Melanoma. This is a very good guide to the stages.Fightmesotheliomacancer.com Useful guide in researching Mesothelioma Cancer, Treatments such as MRI scans, CT scans or Positron Emission Tomography (PET), Lung Transplants, Radiation Therapy, Chemotherapy, Palliative Care and more.Life with Mesothelioma Life with Mesothelioma is still worth living to the fullest. Visit them at LifeWithMesothelioma.com. This site was suggested to me by Jason Bennett. They are a new site all about Mesothelioma and lung cancer. He liked my “established… ummm, unique, site” so I am pleased to put in a link to his site in return for his praise! Let me know if there’s anything else I can help with Jason.Mesothelioma.com Marc Murray kindly sent this link to me about their site. Although it contains adverts for Law Firms (US based) – and something the Furry Monkey doesn’t normally promote, the information contained is excellent and helps people affected by this disease. It was developed to be a complete guide to Mesothelioma for everyone. They have developed their mesothelioma help guide through various freedom of information act requests along with countless hours of research. The information compiled by their team is some of the most up-to-date Mesothelioma information around. Thanks Marc!Mesothelioma and Asbestos Awareness Centre Jason volunteers for the Mesothelioma & Asbestos Awareness Center. They offer comprehensive information on the diagnosis and treatment of mesothelioma to patients and their families, as well as a number of unique resources – including clinical trial updates and daily mesothelioma news.Mesothelioma and Me I’ve been contacted by Debbie who runs this site. She was inspired to create this site after seeing the Furry Monkey which is an honour, thanks for the compliment Debbie! Go and check out her site, there are not so many on this subject and this will help provide people with more info on it.Mesothelioma Cancer Center Richard Moyle, webmaster of asbestos.com emailed me about his site. There is more and more info on Asbestos and Mesothelioma and it’s not before time. Sadly this cancer is becoming more common and we all should be aware of how to protect ourselves.Mesothelioma DR When dealing with any cancer, the more information you have the better. This site gives you all the information only one click away. Again a US site, but they have loads and loads of information for anyone affected by this disease. Thanks Dorothy for the link to this site.MesotheliomaHelp.Net Dolores thanks for the link to your site. Mesothelioma is growing in awareness so much due to websites like this. A US site, but lots of information and it doesn’t matter where you live, but the fact that you find out more about your own disease. They are focused on providing resources to patients and families who have recently received a mesothelioma diagnosis. They have an extensive physician and treatment centre directory (US only), a blog with the latest headlines from scientific journals and mainstream media, and offer free publications for those struggling to understand what a diagnosis means for their future and family.Mesothelioma Information Emma emailed me about mesolink.org – a site that was created to provide you with up to date information on the deadly disease Mesothelioma. They strive to provide the most complete overview of the disease and all aspects of it. Although a US based site, the information covers all aspects of Mesothelioma.Mesothelioma Online Advice Abdulrasool has created very informative and educational website on Mesothelioma Cancer and Asbestos. It is a great resource for mesothelioma cancer researchers and patients alike. Check out the link for advice on mesothelioma, asbestos induced cancer and treatment.Mesothelioma Information and Resource Group MIRG is an organization created to assist patients, families and loved ones in learning about Mesothelioma and other asbestos injuries. It is the aim of MIRG to provide information and news about the disease, its causes, its treatment and its personal and legal impact.Mesothelioma Resource Centre Another US based site, but has very useful information if you are concerned about asbestos. Here you can learn more about asbestos from its history to risks of asbestos exposure to asbestos-related diseases.Mesothelioma Symptoms Another excellent resource on Mesothelioma. It’s certainly getting lots of websites giving information on it for patients which is the important thing abou cancer, and indeed, any other disease you may be diagnosed with. Check it out and find out more. Knowledge = Power remember!!!Mesothelioma Treatment Mesothelioma is one of the deadliest forms of cancer today. It remains the most misunderstood in recent times and continues to cause extensive harm. Check out the information here to find out more.Mesothelioma Treatment Centres Provides information on mesothelioma cancer, the traditional and alternative treatments used, as well as information on the legal and financial implications of dealing with mesothelioma. A US based site but has some useful info on Mesothelioma too.mesotheliomaweb.org Thanks to Lauren for sending me this link. Sadly mesothelioma is becoming more and more common. For nearly a decade, Mesothelioma Web has been one of the most comprehensive sites on mesothelioma, providing facts about palliative care, nutrition, and chemotherapy, as well as information on clinical trials.Mouth Cancer Foundation This link was sent to me by my good friend Louise. More and more mouth cancers are being diagnosed, specially with a serious lack of NHS dentists in many areas. I have Lichen Planus post chemotherapy and now have to be checked every three months for five years and then annually after that. Apparently it can turn to mouth cancer in some cases, but thankfully not all. Check them (and your mouth!) out now!Myeloma UK Myeloma UK informs and supports people affected by myeloma and provides a freephone myeloma infoline, free patient information packs and a wide range of publications and services for anyone associated with myeloma, including a bi-monthly newsletter myeloma today UK. Registered as a charity in 1997, itis the only organisation in the UK dealing specifically with myeloma and its related disorders. 0800 980 3332 [email protected]mywavelength.com This is a free, web-based support network where you can get in touch with other people who have the same cancer type as you or your relative or friend. Just click the link, choose ‘C’ for cancer and choose the cancer type you are interested in from the list. You can join the network and post a message asking other people to contact you through the site. The network is safe and confidential. People can only contact you through mywavelength.com – they will not be given your email address.survivingmesothelioma.com David emailed me about another excellent resource on Mesothelioma, even better when you realise it’s by a 14 year survivor of the disease. Well done! It is all about a book by Paul Kraus a Mesothelioma survivor. Go and check it out, you’ll learn a lot from this site!The Asbestos Cancer & Mesothelioma Cancer Resource Center Molly emailed me regarding the above site. Not only does it have a huge range of information (2200 pages at the last count!) but they are Oncologist reviewed and have accompanying videos on many of the pages, for those who may be hard of seeing or who want to utilize the ease these videos provide.www.weitzlux.com Thousands of people were exposed to asbestos many years ago and subsequently developed cancers such as mesothelioma and lung cancer. Many of those who were simply working to make an honest living do not know their health problems are a result of wrongdoing by the companies that knowingly produced toxic asbestos materials. This website, offers comprehensive information about asbestos, ways people were exposed to it, health risks associated with that exposure and legal remedies. It is a legal site in the US but it does contain lots of useful information. |
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| National Association of Neck Breathers This Trust was set up by the late Sydney Norgate (laryngectomee) and is now administered by his daughters. It provides free help and information to Laryngectomees and their carers. Again this one has no internet site, but can be contacted via snail mail. Thanks to Louise for this information! The Cancer Laryngectomee Trust, P.O. Box 618, Halifax, HX3 8WX Contact: [email protected] Society Neuroblastoma is a rare and aggressive childhood cancer. About a hundred children in the UK are diagnosed each year. The Society works exclusively for these children in raising funds for British research into the disease, and offering information and support for anyone affected by neuroblastoma.NHL – Non Hodgkins Lymphoma Support Group Email discussion list – handy if you just want to find out answers or ask a specific question yourself.NHL Cyber Family Over 800 people from around the world belong to this “Cyber family”. Lots of information and support. They also have a support group on Yahoo at http://groups.yahoo.com/group/nhlif you want to join or ask any questions. Scott Pallack (copyright on the remission document on this site) is the guy who originally created their Support Group. I’ve posted a couple of times but not had any replies to my question, maybe it was too specific. Anyway give it a go and let me know if you have any luck! |
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| Ovarian Cancer Action Ovarian Cancer Action is committed to improving survival for women with ovarian cancer.Ovacome – The Ovarian Cancer Support Network A UK wide support network for anyone affected by Ovarian cancer.Target Ovarian Cancer Target Ovarian Cancer is dedicated to achieving a long and good life for every woman with ovarian cancer. |
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| Pancreatic Cancer UK Pancreatic Cancer UK is a national charity striving for a good and long life for everyone diagnosed with pancreatic cancer. They aim to give patients and their families access to the best possible support, information, treatment and care.Pancreatic Cancer Research Fund Pancreatic Cancer Research Fund is the only national charity exclusively funding research into pancreatic cancer throughout the UK.Pleural Mesothelioma James from Pleuralmesothelioma.com has asked me to put a link to their website which I am pleased to do. Pleural mesothelioma is by far the most prevalent form of mesothelioma. According to the American Cancer Society, three-quarters of all mesothelioma cases are pleural mesothelioma. Lots of useful information here for you.Prostate Cancer Charity Besides their three core objectives – providing support and information, and funding research – and the necessary fundraising activities they also run a series of activities around the UK. Check those bits guys!Prostate UK One in two men will suffer from a prostate disease at some stage in their lives. They seek to limit the damage this causes by raising awareness, providing information and financing both medical research and the training of healthcare professionals. Prostate cancer kills one man every hour in Britain. More research is urgently needed to refine screening and to develop more effective treatments. |
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| Quest Cancer Research Quest funds medical research to detect initial signs of cancer in both adults and children. Quest is the cancer charity that concentrates its resources to develop routine testing so that first signs of cancer can be detected and treated. No animals are used in the research. |
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| RAGE (Radiotherapy Action Group Exposure) R.A.G.E. supports and campaigns for thoes suffering injury from Radiotherapy given as treatment for Breast Cancer. Although I haven’t had breast cancer I have had severe damage from the radiotherapy treatment I received for my PBNHL. It is those side effects that I have to deal with on a daily basis now.Rare Cancer Alliance The primary purpose of the organization is to disseminate information and provide support to rare cancer patients. Most members are rare cancer patients themselves, who have had to go through the process of wading through the information (or lack of information) on the internet for their rare cancer.Renal Cancer Right now, the lives of over three million people in the UK are threatened by chronic kidney disease. To fund life-saving research into kidney disease, to improve the quality of life of those with kidney disorders and to increase public awareness of kidney health please help the Kidney Research UK charity.Researching Malignant Mesothelioma.com Another US based site, but a good one, with lots of detailed information for anyone looking for Mesothelioma help. Lots of success stories which is good news too on this type of cancer. Thanks to Hussein for the link.Childhood Eye Cancer Trust (Retinoblastoma) The Childhood Eye Cancer Trust (CHECT) is a UK wide charity for families and individuals affected by retinoblastoma. We offer support and information, fund research and raise public awareness of this rare cancer.Roy Castle Lung Cancer Foundation Once considered a ‘man’s disease’, lung cancer is now the biggest cancer killer among women in the UK, causing around 13,500 deaths each year – more than breast and bowel cancer combined. The incidence of lung cancer in men has decreased. Watch out for passive smoking!!!! |
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| Selp-Help and Support Groups – Patient Information Publications (UK)Skin Cancer Melanoma is the most dangerous form of skin cancer. In its advanced state, it can cause serious illness and even death. Fortunately, melanoma rarely strikes without warning. Learn how to identify melanoma, how it spreads and what treatments are available. |
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| Butterfly Thyroid Cancer Trust Thyroid Cancer is rare, but numbers are rising. Currently, this stands at approximately 1,000 new cases in the UK each year. Check out more information here. More prevalent in women than men, at a ratio of 2-1, Thyroid Cancer is the most common endocrine malignancy. Prognosis for patients with differentiated Thyroid Cancer is excellent, with an 80-90% cure rate.Jose Carreras Leukaemia Foundation The José Carreras International Foundation for the Fight against Leukaemia was formed on the 14th July 1988 following the recovery of the tenor José Carreras. Despite the achievements and great advances in science made in recent years, leukaemia remains fatal for 30% of children and half of adults. They are constantly searching for ways to extend the fight against Leukaemia and their goal is to one day make leukaemia a 100% curable disease. You have my support on this and that of many others. Just click on the title above to be taken to their website.Thyroid Cancer – A View from a Survivor Going from someone who had never had an operation in their life to being told they had Thyroid Cancer, a useful site to find out the sort of things to expect. It is not medically endorsed or scientific, but might help. |
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| Vaginal Cancer Gynaecological cancers are the world’s fourth largest cancer killer of women. Every year a million women are diagnosed with a gynaecological cancer worldwide. In the UK, 18,000 women are diagnosed and nearly 7,500 women die every year. And yet, awareness and funding of gynaecological cancers remains low. |
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| HOSPITALS AND HOSPICES |
| Hospice Information Service Provides information on the provision of hospice and palliative care services both in the UK and Ireland. Their website has general information about hospices and palliative care together with a directory. St Christopher’s Hospice, 51-59 Lawrie Park Road, Sydenham, London, SE26 6DZ 020 8778 9252Institute of Cancer ResearchInternational Society of Bone and Soft Tissue PathologyPLS Medical Kevin has just emailed me from PLS Medical as they are updating their website. If anyone would like to buy their products, mention the Furry Monkey and you’ll get 10% off – well worth a mention then! 🙂Royal College of Radiologists This a recommended website that has been released from the Royal College. It takes patients through the experiences of having most of the common radiological examinations, c-ray, CT, MRI, Mammograms etc, but also of radiotherapy and some chemotherapy.Royal Marsden A leading UK cancer centre, recognised worldwide for the quality of its services. Site includes comprehensive, authoritative patient information.Sloan Kettering (USA) According to Trevor this is “a grown up site listing a lot of herbal remedies etc”. He has found it useful in discussions with some of his patients. It is run by the Sloane Kettering medical facility in the US.SWSH Cancer Network A central resource providing informationf or: patients and their families, carers, healthcare professionals – shame the Furry Monkey isn’t on there…!!Thames Hospicecare (previously known as Paul Bevan) Formed from the merger of Paul Bevan Hospice in Ascot and Thames Valley Hospice in Windsor, Thames Hospicecare provides a palliative care service to local people affected by cancer or other life limiting illnesses. Thames Hospicecare looked after my friend Lyn, before she died. They do a fantastic job and the hospice in Windsor is lovely. Help them wherever you can.UCL Hospitals NHS Trust Welcome to UCL Hospitals NHS Trust. They are one of the largest and busiest NHS trusts in the country. They provide specialist and general hospital services for patients locally, regionally and nationally. |
| NON-HODGKINS LYMPHOMA SPECIFIC WEBSITES |
| Anthony Nolan Bone Marrow Trust The Anthony Nolan Research Centre runs the world’s largest register of bone marrow donors. The donors are fully tissue typed for matching with people waiting for marrow. All donors are volunteers. Anyone wishing to be a donor should contact the Donor department.British Bone Marrow Donor Appeal (BBMDA) The BBMDA works with the National Blood Authorities in England, Wales and N Ireland to compile a national computerised register of bone marrow donors. Anyone wishing to be a donor should contact their local blood transfusion service. You can find out more from the BBMDA website, or email enquiries to them. The telephone number is an answerphone, with a recording directing you to the website. You can also leave a message. PO Box 2022 Thornbury, Bristol, BS35 3WA 01454 412426 (recorded message) [email protected]British Lymphology Society The British Lymphology Society (BLS) is a multi-disciplinary group of health care professionals and other interested parties directly involved in the management of lymphoedema or interested in furthering the work of the Society.Cancer Information Network Non-Hodgkin’s Lymphoma is a group of malignant diseases which develop from the lymphatic system. This year, more than 50,000 people will be diagnosed with this malignancy. The diagnosis of NHL brings with them many questions and a need for clear, understandable answers… this website can provide some of those answers for you.HUG (Ireland) Hodgkin’s and Non Hodgkin’s Lymphoma (Ireland)Leukaemia Care Society A support group extablished in 1967 which provides support for children and adults with lekaemia and their families. The web site includes detailed information about the Society and its programmes, medical overview and related links.Leukaemia and Lymphoma Society (USA) A national voluntary health agency dedicated to curing leukemia, lymphoma, multiple myeloma, and Hodgkin’s disease. The web site includes details of the 58 chapters of the society, information booklets, patient services, research etc.Leukaemia Research Fund The Leukaemia Research Fund raises funds for research into causes and treatment of leukaemia, myeloma and lymphoma. Provides a patient information service and produces a booklet on lymphoma and treatment. 43 Great Ormond Street, London, WC1N 3JJ 020 7405 0101Lymphoedema.co.uk Lymphoedema is a very common problem – causing swelling of legs, arms and sometimes the body. Often over-looked in the UK, the aim of this web site to to inform people about this condition and what treatments are available to those suffering from Lymphoedema.Lymphoedema People A very helpful site from Pat O’Connor specially created for and by people with the medical condition known as Lymphoedema. Lymphoedema is a condition that occurs from a damaged or dysfunctional lymphatic system. There are two different types of lymphoedema, primary or secondary. This site explains everything you could want to know I think!Lymphoedema Support Network The Lymphoedema Support Network (LSN) is a national UK charity which provides information and support to people with Lymphoedema. Lymphoedema is not a well documented condition. (I have this as a side effect of radiotherapy and it continues to this day). This group can offer support, help and information to those affected by lymphoedema due to cancer or other causes.Steve Norton – MLD Instructor/TrainerA very informative site even if you aren’t training. Recommended by Jan Eversfield my Lymphoedema Expert and a lovely knowledgeable lady. Thanks for making me feel a lot better, specially after my appt with Dr C which really deflated me. Steve has been working as a medical massage therapist since 1986, and is Nationally Certified. Steve received additional training in Complete Decongestive Therapy at Lerner Lymphedema Services P.C. in 1993. He went on to become the Chief Therapist of Lerner Lymphedema Services, P.C. clinics in Princeton, NJ. and New York City from 1994-1999. Additionally, Steve has been an assistant instructor with Lerner Lymphedema Services Academy of Lymphatic Studies under the direction of Robert Lerner, MD.UK Lymph.comUKLymph.com On this site you will find some basic information about Lymphedema, treatments that are currently available together with comments from sufferers on how effective they have found them to be, latest news on the fight against Lymphoedema, information on the Lymphoedema Support Network (LSN), the UK charity under which the East Kent Lymphoedema Support Group operates, a message board for visitors, and links to other sites that might be of interest to you.Lymphoma Association Provides information and emtional support for lymphoma (Hodgkin’s and Non-Hodgkin’s lymphoma) patients and their families. Literature, a newsletter and videos available. Network of helpers with experience of the disease. Groups in some local areas. P O Box 386, Aylesbury, Buckinghamshire, HP20 2GA 01296 619400 (Freephone Helpline 08 08 808 5555) Mon-Fri 9am-5pmLymphoma and Leukaemia Support GroupThis is a UK based support group for Lymphoma and Leukemia. They offer support and information and have a local group meeting in Nottingham.Lymphoma Information Network Lots of useful information on Lymphoma, specially the rare Primary Bone Lymphoma which I have.Lymphomanet.orgAndrew has emailed me about his new website on Non-Hodgkin’s Lymphoma. Well done Andrew – the more info out there the better! It aims to help improve communication about Non-Hodgkin’s Lymphoma and its treatment. Non-Hodgkin’s Lymphoma is a complex disease, not often in the public eye. Yet treatments are available, and many people with certain types of the disease can be cured. Others may enjoy relatively long periods of time with few, if any, symptoms. Lymphoma-net.org contains a wealth of background materials that patients and carers can refer to in their own time, helping them to have better-informed discussions about Non-Hodgkin’s Lymphoma and its treatment.Lymphoma Research Foundation I personally found this Association extremely helpful and they provided me with a lot of very useful information, even with american spellings! The California office is mainly for Patient & Professional Education, Services and Support. The New York office deals mainly with Public Policy, Research Grants, Finance and Development. (LRF), 8800 Venice Boulevard, Suite 207 Los Angeles, CA 90034 (310) 204-7040 or (800) 500-9976 or 111 Broadway, 19th Floor New York, NY 10006 (212) 349-2910 or (800) [email protected]Lymphoma Support and Research (Australia) Tracey Winton has just told me about this site now that she has just let it loose on the world. This group was started by her Mum and another sufferer and has been the driving force in them becoming incorporated which allows them to go to the next level, the current board are all sufferers at different stages of the disease. The more people that are aware of this disease the more effective the group will become. The aim is for the association to go Australia wide with groups already established in WA, Vic and NSW so it is no small task as you can imagine.Lymphomation.orgA very detailed site on Lymphomas recommended by Anjou – thanks for this. It’s one I’ve checked out in the past but hadn’t listed! |
| OTHER HEALTH RELATED WEBSITES |
| This section contains sites on the following subjects: – Arthritis – Complex Regional Pain Syndrome – Diabetes – Fibromyalgia – Gallbladders – General Health – IBS – Lymphoedema – Others |
| ARTHRITISArthritiscare.org.uk About one in a hundred people get rheumatoid arthritis. People of any age can develop it, but it’s most common between the ages of 30 and 50. It affects three times as many women as men.Arthritis Research Campaign The Arthritis Research Campaign (arc) aims to advance the understanding, prevention and treatment of arthritis and related conditions. They fund research into all forms of arthritis, and provide information on arthritis to the public and health professionals.Arthritis Foundation All you need to know about arthritis and rheumatoid arthritis in particular.The Arthritis and Glucosamine Information Centre Looking for high-quality information on Arthritis or Joint Pain? Come to the Glucosamine and Arthritis Center for in-depth infomation, clinical research, treatment options, and advice on how to maximize joint health so you stay healthy and flexible!UK National Rheumatoid Arthritis Society UK national rheumatoid arthritis society providing information on rheumatoid arthritis symptoms, auto immune disease as well as joint replacement surgery. |
| COMPLEX REGIONAL PAIN SYNDROME (CRPS)Complex Regional Pain Syndrome I have put this link here because post-cancer treatment I now have this ‘Syndrome’ and it is extremely painful. Sadly it is a rare one and not easily recognised by Medical Professionals. Please check out the link, as you may find it of some help!RSD Hope Although this is an American site, there is absolutely LOADS of useful information on it. I’ve since realised that I’ve had a lot of the symptoms of this Syndrome for a long time, but no one has been listening to me. Hence it’s taken an extremely long time to finally get a diagnosis! Don’t give up is the answer. |
| DIABETESDiabetes UK Is the leading charity working for people with diabetes. They fund research, campaign and help people to live with the condition. Their mission is to improve the lives of people with diabetes and to work towards a future without diabetes.Diabetes.co.uk Aim to provide you with information, services, products and resources for those with diabetes and those caring for diabetics. Diabetes in the UK affect almost 2.5 Million people.Healthline.com Tracy kindly emailed me about this site. Healthline provides a very comprehensive overview of Type 2 Diabetes as a critical starting point for individuals and/or their loved ones. The more information you have, the better you deal with the disease. As a type 2 patient I know this only too well. Check it out and learn more about you!!West Suffolk Diabetes Service Also applies to every diabetes sufferer worldwide. Lots of useful information on dealing with the day to day live.The Diabetes Quiz Jacob has emailed me to tell me all about the Diabetes Quiz. It’s a very useful site as I’ve gone through the quiz myself as my Mum is diabetic. There are many thousands of people walking around who are diabetic and don’t realise it. This is SO dangerous. The Diabetes Quiz is an educational site to learn about diabetes. The Flash quiz has over 100 questions and topics include: diabetes basics, diet and food, exercise and fitness, stress and relaxation, statistics. There is also a Flash browser on the site to view and print all questions and answers. The interface is simple and both kids and adults will find this new educational resource a unique way to learn about diabetes. |
| FIBROMYALGIAFibromyalgia Support Group A community of patients, family members and friends dedicated to dealing with Fibromyalgia, together. |
| GALLBLADDERThe Furry Monkey Gallbladder Page!http://gensurg.co.uk/lap%20chole%20page.htm (this site includes pictures so if you’re squeamish, watch out!)http://www.livingstone.demon.co.uk/page5.html (again this site contains pictures in full glorious colour so be careful!) |
| IBSThe IBS NetworkI tried emailing this society and although they couldn’t help me via email, they did suggest I call their helpline who would be able to advise me further. If you have any queries regarding IBS, then give them a call.The mission of the IBS Network is to inform, support, and educate those with IBS and their families and carers; to improve the quality of life of those with IBS and to raise public awareness of IBS and the issues surrounding this condition.IBS Network, Northern General Hospital, Sheffield, S5 7AU IBS Helpline (calls answered by specialist IBS nurses) 01543 492 192 Monday to Friday 6pm to 8pm This line is also open on Saturday Morning 10-12 noon Reg. Charity Number 1057563IBS Tales Read the personal stories of IBS sufferers and share your own experiences. As someone who suffers this due to medication, I appreciate how it affects daily life.Healing IBS Dr Phil Hariram has told me about his website at www.healingibs.com – Irritable Bowel Syndrome is a common disorder strongly associated with major burden of illness, poor quality of life, high utilisation of health services and high rate of absenteeism from work or school. This is the main page, but check out the Links too for more sites (including Furry Monkey!). |
| LYMPHOEDEMABritish Lymphology Society The British Lymphology Society (BLS) is a multi-disciplinary group of health care professionals and other interested parties directly involved in the management of lymphoedema or interested in furthering the work of the Society.Lymphoedema.co.uk Lymphoedema is a very common problem – causing swelling of legs, arms and sometimes the body. Often over-looked in the UK, the aim of this web site to to inform people about this condition and what treatments are available to those suffering from Lymphoedema.Lymphoedema People A very helpful site from Pat O’Connor specially created for and by people with the medical condition known as Lymphoedema. Lymphoedema is a condition that occurs from a damaged or dysfunctional lymphatic system. There are two different types of lymphoedema, primary or secondary. This site explains everything you could want to know I think!Lymphoedema Support Network The Lymphoedema Support Network (LSN) is a national UK charity which provides information and support to people with Lymphoedema. Lymphoedema is not a well documented condition. (I have this as a side effect of radiotherapy and it continues to this day). This group can offer support, help and information to those affected by lymphoedema due to cancer or other causes.Steve Norton – MLD Instructor/TrainerA very informative site even if you aren’t training. Recommended by Jan Eversfield my Lymphoedema Expert and a lovely knowledgeable lady. Thanks for making me feel a lot better, specially after my appt with Dr C which really deflated me. Steve has been working as a medical massage therapist since 1986, and is Nationally Certified. Steve received additional training in Complete Decongestive Therapy at Lerner Lymphedema Services P.C. in 1993. He went on to become the Chief Therapist of Lerner Lymphedema Services, P.C. clinics in Princeton, NJ. and New York City from 1994-1999. Additionally, Steve has been an assistant instructor with Lerner Lymphedema Services Academy of Lymphatic Studies under the direction of Robert Lerner, MD.UK Lymph.com On this site you will find some basic information about Lymphedema, treatments that are currently available together with comments from sufferers on how effective they have found them to be, latest news on the fight against Lymphoedema, information on the Lymphoedema Support Network (LSN), the UK charity under which the East Kent Lymphoedema Support Group operates, a message board for visitors, and links to other sites that might be of interest to you. |
| OTHERSAcne Assasin Melissa emailed me telling me about her website/blog after seeing Acne Helper on here. Hope the link is OK Melissa and well done for helping others with the same problem as you – similar to the Furry Monkey!Acne Helper Learn how to effectively stop and treat acne with a new site from Brandon whose mission is to provide you with a way of dealing with acne. Here you can find many different ways to not only treat acne, but prevent it before it occurs.Angiologist.com Ido has recently sent me this link to his site, admittedly, they do not write about lymphoma. However it is a site about evidence based vascular medicine that is constantly growing. They also have a twitter account that (they feel) is interesting. Go and check it out!Careplace.com CarePlace is an online community for people with similar health concerns and their caregivers. They’ve just added a new Non-Hodgkin Lymphoma community to the site and would love to hear what you think. It’s a unique online support network for those with rare disorders. Check it out and let them know.www.chiropractor.co.uk A very useful site with information on local chiropractors who can help you look after your back – you only have one and it has to last a lifetime!Drug3K Confused about drugs you’ve been prescribed? Then check out Drug3K as it features detailed information on prescription and medications including description, image drug, use, dosage, storage, precautions, and side effects. Prescription drug information for consumers who take the actual drugs!Health Expert Advice A site from the USA but has useful information on health. Health is health no matter where you are in the world! :-)HealthopediaA medical and health consumer information resource containing comprehensive and unbiased information in patient-friendly language from trusted sources on over 1,500 health topics, 70 focussed health centers, and more than 11,000 drugs and medications. Thanks for the link Laurie!Treatment-Centres.net Brett sent me a link to this US based site. . From addiction to prescription drugs to alcohol, their facility tackles treating these diseases with integrity and safety in mind. Treatment-Centers.net is a community based public-benefit website devoted to helping individuals and families find help for addiction and dual diagnosis. Our site contains the largest and most comprehensive publicly rated and reviewed directory of addiction treatment centers in existence. Therapy Directory Ross kindly sent me this link through. So why should you choose Therapy Directory? Therpay Directory only lists therapists who are registered with a recognised professional body or those who have sent us copies of their qualifications and insurance cover. Now you know you can trust them, just make your choice! |
| PERSONAL WEBSITES |
| Carols’ Smile I found this charity whilst coming back from a charity event! We stopped at a service station and by the till was a collecting box for Carol’s Smile. I noticed it was a Lymphoma Charity and wrote it down to check when I got home what it was all about. Graham you’ve done a tremendous amount of fundraising in memory of Carol. Good Luck with everything and keep walking and keep smiling! She would be SO proud of what you’ve all achieved in her memory. Please note this site is not currently available.Heather – Butterfly Dreams A personal site regarding NHL (Heather had NHL Stage 4a) and other health related issues (as well as graphics and stationery for your mail program). Strangely again, no monkeys! Apart from the mention of Furry Monkey on the cancer page of course!Janos Czipri – His Story Janos was in remission for 15 months and is now back on the long road again. Keep fighting Janos – you’re a strong man and can cope with this little problem! The site hasn’t been updated since November 2005 and although I’ve emailed Janos I’ve not had a reply back. Hope everything is OK with you Janos! Please note this site is not currently available.Jimby (Monkey friend of Mick Mason) Jimby is a monkey friend of Mick and now has his own website. There’s obviously a monkey theme running here!! Check out his site and see what he gets up to. Monkeys rule!!! :-)))Julia Darling This is the website of the poet, playwright and novelist Julia Darling. I’ve chosen this page as a starting page as the poem says it all. Please take the time to read it, and then browse the rest of the site too, very interesting reading.Lawrence Wray A very informative site here from Lawrence. Everything from Hickman Lines to Benefits. Lots of useful sections to keep you reading long into the night! Last updated 2005 but still has some useful info.Lori Hope Lori contacted me through my Guestbook and like moi she is a positive person about cancer. Lori is one of the fortunate 15% who live more than five years after hearing the words, “You have lung cancer.”Lori has many strings to her bow, so go and check out her website for more information. Lori – I did email you but got no reply – please email me again if you still wish to talk to me 🙂Melody Lassalle A personal site (well actually two!) from my good friend Melody Lassalle. We’ve been friends for a long time now and we now email instead of letters. She has a website on her great passion in life genealogy and also one on Chronic Illness as she has suffered for many years with ankylosing spondylitis, a form of arthritis. Her tribute to Sierra (her lovely dog who I knew from a pup – virtually) and her new dog, Misha is now welcomed to the family. www.yourislandroutes.com (Genealogy) http://www.chroniclife.com (Chronic Illness)Mick Mason (FAP Gene) FAP is an inherited condition which mainly affects the large intestine (also known as the large bowel or colon and rectum). People with FAP develop many polyps (which are like small cherries on stalks) inside their large bowel. There are many different types of polyps but these particular polyps are called adenomas (the “adenomatous” in FAP). An adenoma can in time turn into a cancer which is why it is so important to make sure anyone at risk of inheriting FAP is examined.Mike Chapman Mike has a website all about his hip replacement operations. It is partly written as his hip which is an unusual angle (no punintended Mike!) to write from. He even has photos of his xrays on there too.SRCT.comRichard has just started this database site of treatments for the sarcoma Desmoplastic Small Round Cell Tumor. Desmoplastic Small Round Cell Tumor is an aggressive cancer that usually occurs in multiple masses in the abdomen and affects the lymph nodes and lining of the pelvis and abdomen. The most common symptoms are abdominal pain, abdominal mass, and symptoms of gastrointestinal obstruction. Go and check it out and add to the database if it’s “your bag” as they say!The Furry Monkey – the best – well I’ve got to say that! |
| WITH THANKS |
| THANKS!Lymphoma Research Foundation With many thanks for all the help and information provided. The Terminology and The Big C contain information used with permission by the Lymphoma Research Foundation. Thanks!O’Reilly Publishers Cindy Wetterlund of O’Reilly Publishers. “Non-Hodgkin’s Lymhomas” is often referred to and much appreciated!Velnet.co.uk THE best hosting site in the world, thanks Temi!!! w: http://www.velnet.co.uk/ |