Monthly Archives: May 2010

Treatment in France

Map of France (wp-EN), with names in French
Image via Wikipedia

TREATMENT CENTRES IN FRANCE

www.fnclcc.fr is the website for the Federation Nationale des Centres de Lutte contre le Cancer.   It incorporates a page in English which details the work of the Federation and names the 20 cancer centres.
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Frances Wilkinson, Secretary of Cancer Support France, says they “will always support English-speaking people affected by cancer in France and you will have seen from the CSF website that we have branches of our organisation in many parts of France where there is a significant population of Anglophones.
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Incidentally, although I do speak French, and so do the people I mention in the case study below, a large proportion of French medical staff speak excellent English.  One darling doctor just grunted as he examined my skin lesions from Tamoxifen – and kept on grunting.  So no interpreter needed there, but he set in motion the treatment I had which cured my skin lesions;  lesions that had stumped doctors at the Royal Marsden in London.
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CASE STUDY : Medicine and treatment in France

You may decide to hxxll with trying to get the NHS top pay – you are going anyway and will pay.

Two friends who live down the street were surprised and pleased at how easy it is to get treatment in Europe. They knew I had been there to get help with cancer side effects, and were impressed.   So here, straight from the horse’s mouth, is what it’s like to go off abroad for treatment. Both had been passed around from one NHS pillar to another medical post, were fed up with years of waiting and wrong diagnosis, and just wanted to get things done. Now, they almost automatically book to go to France when they need treatment.

“When I wanted to find a prostate specialist when I had to go to Lyon, I merely googled :”Prostate specialists in Lyon” and up came various names, one of whom I called , got on to her secretary, and booked myself in. The cost was less than in London for seeing someone of comparable quality, I was seen immediately and laboratory tests were done on the same day, also at less cost, with the results coming through quite quickly.

When Robin had a problem with ingrowing toenails some years ago, we saw a French doctor within 10 minutes and the antibiotics were produced immediately, all at much less cost than here ( the doctor was in Paris ).

When needing a scan in Lyon, we booked up the appointment to coincide with our holiday in the South of France. No waiting, the scan cost £80 instead of £800 over here, and a doctor explained the results immediately afterwards in very good English. This was not on the EHIC (European Health Insurance Card) as it was pre-booked. However, further tests were done by my friend Dr Degraix, one of the leading ENT specialists in Lyon, and drops were duly administered for the infection which cured it in 7 days, whereas it had taken months of footling around in the U.K and we didn’t get anywhere.

When in France, we are always falling off rocks, pulling muscles diving into swimming pools, getting appalling stomach upsets after yet another 5 course Michelin meal, and always having to see a doctor or go to hospital to get cured. The results are always much better than in the U.K, cheaper and more effective.

It is also definitely worth comparing medical costs on a pre booked basis between here and France, and I haven’t seen or heard much about MRSA or whatever the latest bug is, but the French seem to have that under control”.

Warning! The French, like us, are getting fed up with medical tourism.  But they have the will to do something about this, so don’t imagine you can go there and present yourself at a hospital, claiming to have suddenly got cancer – it won’t work.

You will be treated well, then presented with a bill at the end – and there won’t be any way you can get out of paying.

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Support Centres can help wherever you are

SUPPORT CENTRES help with ‘invisible’ costs of cancer

Support Centres not only provide support for those surviving, but research is proving that people who use a suitable centre for support  could be living longer.

At a recent Macmillan conference, a doctor mentioned in his speech that statistics tell us that ten years after diagnosis,  60% of cancer patients are still having to seek treatment for long-term side effects from cancer drugs.  So patients may still need support, years after their treating hospital has discharged them.

So the lucky ones turn to a Support Centre where they find a range of helpful assistance, which they can access when they want it.  This may include information, massage, reflexology and other therapies, benefits advice, counselling, dance and yoga classes, nutrition advice, etc.  They are all different, with different ‘specialities’;  their only ‘common’ factor is generally welcoming you with a warm smile and a cup of tea or coffee – before they ask how they can help.

Some provide help whenever and to whoever needs it – others have to limit what help they offer as they do not have the resources to look after everyone.  Ask.

Ashford Breast Cancer Support Group Ashford Hospital, Middx.  Meets 2nd Monday each month 017834-455760/01784-252 344

 

Asian Womens’ Cancer Support Group

They hold meetings last Friday of month at Shree Kutch Satsang Swaminarayan Temple,  Westfield Lane, Kenton,  Harrow, Middx,HA3 9EA.

Barnet and District Cancer Link Wednesday Drop-ins at Catholic Church of Mary Immaculate, Union Street, Barnet.  020 8446 3104 Weds. 1.30 – 4 pm. They supply physiotherapy, reflexology, manicures, etc. – and there is no waiting list!

BESS (Breast Cancer Ealing Self Support Group) Ealing Hospital.  Meet 3rd Wednesday every month.  020 8574-7939/020 8843-9582

 

Betterdays Cancer Care was founded by Marina Raime to provide advocacy and support for women with breast cancer. The primary objective of this organization is to provide a strong support base, particularly for BME women, and an emotional safe haven for breast cancer survivors to express their fears, frustrations, and concerns.  Marina says “we provide updates of breast cancer educational information, to teach each member and non-member to take responsibility for their own health, so that they can reclaim a sense of control in their lives”. www.betterdays.uk.com

Bosom Friends Community Cancer Centre, Yiewsley, Middx.  01895-448329

Breast Cancer Haven was just in London, but is now spreading across the country.  

They often choose to set up in unusual buildings (the one in London is in a redundant   Church)  and have lovely stained glass and other decorations – the one here is a window, which is peaceful to look at, but inspiring.

They offer different therapies, according to which therapists are available, but I had some excellent massages whilst I was there.        www.breastcancerhaven.org.uk

Bradford Cancer Support is an Independant Registered Charity, supporting  people whose lives have recently been  affected by cancer, in the Bradford Metropolitan District of West Yorkshire.  Offering Therapies, counselling, Art Therapy, etc. all  services are free of charge. l 01274 776688 or  www. bradfordcancersupport.org.uk
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CANCERactive is an independent charity that aims to help people increase their personal odds of beating cancer. To achieve this they believe in empowering people – to  understand the possible causes and to build effective integrated therapy programmes, using well-researched, Complementary and Alternative therapies not merely Orthodox ones – the best of the best.  Their motto is  Intelligent Information. Independent Voice.  They have a list of cancer support centres all over the UK – just click on the county and up comes a list of some of many centres.  www.canceractive.com

Cancer Choices, 29 Carland Road, Dungannon, Co. Tyrone, BT71 4AA

 

Cancerkin Centre at Royal Free Hospital, Just off North London’s Hampstead Heath.  It is a breast cancer charity. Its activities include: one-to-one support by trained volunteer visitors with personal experience of breast cancer. group support meetings, massage and reflexology, ‘Look Good – Feel Better’, Lymphoedema clinic by hospital specialist referral (upper limb problems related to breast cancer treatment only),Counselling, psychotherapy, Information – courses – seminars, Yoga class. Psycho-sexual counselling. Drop-in information library with internet facilities. Art therapy. Creative writing,  Pilates, etc.  020 7830 2323 or 2310   www.cancerkin.org.uk

Cancer Lifeline 44 Alliance Avenue, Belfast, BT14 7PJ (tel. no. 028 90 351 999)

Care for Cancer, 10 Prospect Court, Omagh, Co. Tyrone, BT78 1AR, (tel. no. 028 82 246 599)

Cherry Lodge Cancer Care Offers a Cancer Information Nurse, Welfare Benefits advice, Home Visiting, Massage, Reflexology, Reiki, |ilates, Qi Gong, Yoga, etc.   and Workshops.  23 Union Street, Barnet, EN5 4HY 020 8441 7000  www.cherrylodgecancercare.org.uk

Chelsea and Westminster Hospital Ground Floor, 369, Fulham Road, Chelsea, London SW10 9NH. 020 8237-2386. http://www.chelwest.nhs.uk Russ Hargreaves runs a small but very welcoming information centre, with a limited amount of therapies. Lots of sensible books and leaflets, and tea and coffees.  And when I need to have medical terms or theories explained to me, Russ does this in incredibly simple, easy-to-understand language.  He deserves a Crystal Award!

Chrysalis is the Crawley (Surrey) Breast Cancer group who meet at 7.30 every last working Monday of the month, at thePostgraduate Medical Centre, Crawley Hospital, West Green, Crawley.  www.chrysalisbreastgroup.org.uk

Community Cancer Support Drop-in Centre, Yiewsley, has opened to provide information and support for people with cancer and those caring for them by providing General information, counseling, support groups, complementary therapies and other services. Our aim is to help people who are diagnosed with cancer and feel isolated, vulnerable and afraid by providing the answers of their questions to provide support, access to self help, and to help anyone affected by cancer regain a sense of control in their lives.

We are a group of people who have had personal and professional experience of cancer and who are particularly aware of the need for people to talk when they or someone close to them has been affected by cancer.

We see the centre as bridging the gap between home and hospital, with links to all aspects of health care, voluntary and statutory.

The centre opening time: Monday to Friday 9.30am – 4.30pm  18A Fairfield Road, Yiewsley, Middlesex, UB7 8EX 01895 461016.  www.communitycancercentre.org.uk

Fatigue Management Service, Neil Cliffe Cancer Care Centre. Wythenshawe Hospital, Southmoor Road, Wythenshawe, Manchester M23 9LT Tel: 0161 291 2912

Guise and Dolls They were formed for Head and Neck Cancer patients at Guys and St. Thomas’ Hospitals in London (Florence Nightingale started St. Thomas’).  Their website is fun to navigate, and they have a moving poem from a breast cancer survivor on their site.  Good easy-to-read information about diet, and lots of fun things to click on.   http://www.guiseanddolls.org.uk

Harbour Cancer Support Centre offers a  wide range of services, open Mon – Fri 1000-1600, and Saturdays 1000-1230

Gosport, Hampshire  023 9250 1503  admin@harbourcancer.org.uk   www.harbourcancer.org.uk

The premises are located on the first floor, so if access may be a problem call them and they can arrange to come to your home or meet at an alternative location.

The Haven Centre, Blantyre Health Centre, Victoria Street, Blantyre, G72 0BS, Tel: 01698 727884

The Living Tree

The Living Tree, living well with cancer, is a self-help support group & weekly drop in based in West Dorset

but open to anyone who considersThe Living Tree
themselves within reach.

They meet Fridays 2.00-4.30pm at Friends MeetingHouse, 95 South Street, Bridport, DT6 3NZ and provide information,speakers & support on diet, exercise, relaxation, therapies, creative
arts etc to help us live well with and beyond cancer.
Contact: 01308 427851, jo@jovian.co.uk
http://www.thelivingtree.org.uk

Lifestyle Club is held at the Darnton Drop In Centre at Tameside Hospital, Ashton – under-Lyne
The Lifestyle Club was founded at the request of the patients who were interested in making healthy lifestyle choices. We initially started out meeting as a group (aka Weight Watchers) with a view to sharing hints and tips between patients, but this has evolved into one-to-one sessions where clients are able to discuss topics (such as fear of recurrence, body image issues) which they prefer to discuss confidentially.

Irene Murray is a qualified Life Coach, available between 11.30 – 1.00 to offer weigh-in, BMI and body fat testing, food diaries and advice on the 4 pillars of health: Nutrition, Exercise, Sleep and Relaxation.  A survivor of 9 years, who has devoted her time to researching Quality of Life and Healthy Lifestyle.  Specialises  in working with people after a diagnosis of cancer to make lifestyle changes to improve chances of survival and improve Quality of Life.                      01457 763474, 07887 654953 or via e:mail murrayirene267@btinternet.com http://www.tamesidehospital.nhs.uk/Pages/OurServicesDarntonDropIn.asp

Lynda Jackson Macmillan Centre, Mount Vernon Hospital.  Drop-in centre for support and information, telephone helpline, Benefits advice, pre-treatment advice, Complementary Therapies, Relaxation Sessions, regular courses and events.   Mount Vernon Hospital, Rickmansworth Road, Northwood, HA6 2RN.  01923-844014  www.ljmc.org

 

LILAC CENTRE , 3 Barrack Square, Coalisland, Co. Tyrone, BT71 4JG (tel. no. 028 87 746 600)

Macmillan have over 800 contact centres across UK.  Some are just a nurse with information – but some are large, well equipped centres.    Find nearest one on http://www.macmillan.org.uk/Get_Support/Cancer_support_groups/Search_Results.aspx?c=0

Macmillan aren’t just for the terminally ill, but have marvellous comforting centres all over Britain with helpful information staff, therapies and treatments, teas and coffees, etc. www.macmillan.org.uk

Macmillan also runs many centres in local hospitals, or privately in members’ homes, etc. If you want to find the nearest to you, go to http://www.macmillan.org.uk/Get_Support/Cancer_support_groups/Search_Results.aspx?c=0

Macmillan Support and Information Centre, Belfast City Hospital, 77-81 Lisburn Road, Belfast, BT9 7AB (tel. no. 028 90 699 201)

Maggie Centres are to be found in Edinburgh, Glasgow, Dundee, Highlands, Fife, London, Oxford, South West Wales, Lanarkshire and Hong Kong.  

Maggie’s is a growing network of cancer caring centres throughout the UK offering high-quality, community-based support. Their  unique programme of support is designed to empower people to live with, through and beyond cancer.  www.maggiescentres.org enquiries@maggiescentre.org     0300 123 1801

 

Maggie’s London is the big orange building in the grounds of Charing Cross Hospital,  on the corner of Fulham Palace Road and Dunster Road  (go round to the side to find entrance – and head for the orange cube!) Join an activity – yoga, meditation, tai chi – get some advice or simply drop in for a cup of tea. Anyone affected by cancer is welcome including carers, family and friends. 020 7386 1750

 

 

Marie Curie Cancer Care Is one of the most helpful organisations, and also one of the UK’s largest charities, but has managed to keep its focus on why it was founded.  Founded in 1948 – the same year as the NHS – it  marks its 60th anniversary in 2008.   Basically it provides care for  terminally ill patients in the community and in their hospices, along with support for their families.  However, some centres also provide palliative care for cancer patients, which is now becoming allied with survivorship – so worth asking your local centre is they provide anything for you.    Phone 0800 716146 (for a wide range of queries, from asking how to get a Marie Curie Nurse to getting involved in fundraising events or making a donation).  www.mariecurie.org.uk – general

The Mulberry Centre sits in the grounds of the West Middlesex Hospital, surrounded by lawns and trees – with lovely gardens to sit out in!  Open daily, with late evenings four times a month.  They offer complementary and relaxation therapies, counselling, support groups, information library and workshops.  It has the Macmillan Quality Mark for excellent care in a support centre.   020 8321 6300  www.thermulberrycentre.co.uk

Northwick Park Macmillan Information Centre As you go in, there is a wide entrance welcoming you to the Macmillan Information Centre, with Helene Buijs and one of her helpful volunteers ready to answer questions.  No-one pounces on you, you can walk around on your own, but pretty soon someone comes up and gives you just the right leaflet, and piece of information you are looking for.  There is a regular session dealing with Benefits advice, which when I was there was giving excellent support and information.   The Centre reminded me of Aladdin’s cave – you just didn’t know what helpful leaflet was going to be found in the well-stocked shelves – but they have an incredible amount of information to offer.    It says a lot about the centre – I was told that all the volunteers that had been there when the centre opened, are still working, and very happily.  Northwick Park Hospital, Watford Road, Harrow  020 8869 5099  www.nwlh.nhs.uk.

Nottingham Cancer Patients and Carers Support Group hold meetings every 3rd Tuesday in the month, with a guest speaker of event.  Typical is their next event on Tues. 21st Sept. on Reflexology.  Meetings held in ‘A’ Floor Classroom of School of Nursing at Queens Medical Centre.                                                                                                                       For more details contact Freda Ingall RGN on 0115 931 3541

Paul D’Auria Cancer Support Centre As they say on their website, not the easiest spelling to remember – but the centre is warm and very welcoming, situated in Battersea, London. If you can’t visit, there is a very caring telephone Helpline;  they answer emails from all over Britain, and if you live locally but can’t get out, they have a Home Visit service.  Their AGMs are always standing-room only – and food at events is fantastic!   The Paul D’Auria Cancer Support Centre, a registered charity, was the first cancer support group to be set up in London in 1983.  Since then we have developed many innovations in the cancer support field, including helping to pioneer the use of massage for people with cancer.  The Centre has also won two national awards for the quality of its work.  20-22, York Road, Battersea, London SW11 3QS 020 7924-3924 http://www.pauldauriacentre.org.uk

Peterborough Breast Cancer Support Group are a very go-ahead team – join up with them and they have a lovely welcoming attitude.  You may be swept up in a pink limousine for Fashion Show, or take part in lots of other activities.  They have an extremely sensible and easy-to-read brochure about After Treatment – go to  http://www.peterboroughbreastcancersupportgroup.co.uk/aftertreatment.htm

Pinkladies.org.gg are based in Guernsey, and get up to all sorts of fun things!  They have a very useful local Contacts list.

Sara Lee Trust based in East Sussex, and offers therapies, acupuncture, massage, etc.  You need to be referred by a professional  (doctor, Macmillan or other nurse, GP, etc).                                                                                                                         25 UpperMaze Hill, St Leonards-on-Sea, East Sussex  TH38 OLB 01424-445177  http://www.saraleetrust.org

Shine Cancer is rarer in people under 50 and, although any cancer experience will be difficult, it is easy to feel especially isolated when you can’t find people in similar circumstances to you. Shine is a web-based support centre, running events all over Britain, and some of its happy members are pictured below!

Under 50 but not a teenager anymore, Shine is a web-based support centre, running events all over Britain. Some of the happy group that run these events are above!

You may have different concerns to other cancer patients such as preserving fertility , looking after young children, going back to work or starting new relationships.
Meeting others who have similar concerns can certainly help you feel less alone.  Making friends along the way is one of the positive side effects of cancer according to some of our members!
Focussing on social events and making new friends, Shine aims to empower younger cancer patients to improve their experiences, whatever part of their ‘cancer journey’ they are at.  www.shinecancersupport.co.uk

South East Cancer Help Centre is based in Purley, Surrey, and offers a wide range of therapies, group activities (including T’ai Chi on the lawn when fine) and talks.  020 8668-0974   www.sechc.org.uk

St. Mary’s, Paddington Vicky Harmer runs a ‘fun centre’ with lots going on, and the nice thing is – if you have been treated at a London hospital with no centre, you are welcome to come here. Speakers at their events range from Guide dogs for the blind, to dieticians.  Phone 020 7886-1425

Survivorship

At last!  The NHS realises that they SHOULD do something to help us after we leave hospital.  Macmillan already provide the basis for many support centres, but the NHS does not seem to realise how important these can be (e.g. the NHS cancer ‘flagship’  Royal Marsden says they have no need for a centre as patients come from far and wide – but most are from local area, and there is nothing !)

Macmillan are they are now involved in an a Consultation exercise on Living With and After Cancer.  More in on http://www.macmillan.org.uk/Get_Support/Living_with_or_beyond_cancer or  http://www.improvement.nhs.uk

and newsletter on http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/DH_088879

Sutton Coldfield Cancer Support Centre

is celebrating their tenth birthday.  They offer therapies such as Aromatherapy and other massages, counselling, Yoga, etc. but also have various groups including a Walking Group.  0120 321 1300  www.suttoncancersupport.co.uk

The Ulster Cancer Foundation 40-44 Eglantine Avenue, Belfast, BT9 6DX (tel. no. 028 9066 3281).   Care Services Department with patient information conferences, support group meetings etc.  Counselling life-coaching courses, art therapy, creative writing groups, life stories (reminiscence writing) groups, ‘Beauty for Life’ workshops, a mastectomy and headwear fitting service, a family support service, a freephone cancer helpline (tel. no. 0800 783 3339 Monday – Friday, 9.00 am – 5.00 pm) and a patient advocacy group.  Patients, carers and their families can contact  for more information via helpline or call in to the centre for a chat or to view leaflets and pamphlets.

Velindre Cancer Centre, Velindre Road, Whitchurch, Cardiff, CF14 2TL.  Tel:  029 2061 5888

Weston Park Cancer Information and Support Centre,  Sheffield, offers a full range of therapies, counselling, courses on handling cancer, etc.  0114- 2265391 www.cancersupportcentre.co.uk

SUPPORT IN  OTHER COUNTRIES

Australia

Talking Cancer is a website where patients and carers share their experiences, and offer support and guidance.  It seems to be read by Australian nurses (with expert knowledge) as well as the general public. There are a range of discussion forums covering general cancer topics, specific cancers, and support for carers. The forums provide the opportunity to connect with others online, 24 hours a day.  The webmaster says they are particularly interested in stories from around the world , especially on ‘after care’.    http://www.talkingcancer.com

Canadian Breast Cancer Network  – Réseau canadien du cancer du sein 331, rue Cooper Street, Suite 300, Ottawa, ON K2P 0G5   613-230-3044 ext. 222  1-800-685-8820 http://www.cbcn.ca

France – two very helpful websites set up for English speaking visitors or residents in France, are  www.cancersupportfrance.info and www.pariscentresupport.com

Helplines and useful websites for cancer patients

Using the Internet

Websites can be incredibly helpful,  and Breast Cancer Care say 74% of patients who use websites, use them as a primary source of informtion;  apparently only 11% ask their doctor first!

There are Websites set up in many countries. Many of the dud ones seem to have given up, leaving the good ones to survive.  And even doctors now acknowledge there is some good stuff out there!

You still have to be wary when you find a new website, but below are some of the useful and helpful ones I have found for HAVING FUN AFTER CANCER!  I have added notes that might help when you are looking for the right contact.

If you are in UK, it is often helpful to go to websites in other countries.  Although our charities have excellent sites, our NHS sites are sometimes not so brilliant.  So try American, Canadian, Australian and European sites (usually with an English option).

Action Cancer – for those living in Northern Ireland, there is a helpline, information, downloads and some free complimentary therapies.  028 9080 3344  www.actioncancer.org

Age Concern -even if you not an OAP, Age Concern has some of the most practical and sensible advice I have seen for coping with disabilities, benefits, etc.  You don’t have to be an OAP to take note of what they say, but if you are you will find they are incredibly helpful.  0800 00 99 66  http://www.Age concern.com/

Anaemia – also known as Anemia in US.  This can happen to us when we have to take drugs, and needs expert attention.  If you feel desperately tired, check with your doctor just in case you have this.  If you want more information, the best website I have come across is www.anemia.org

British Red Cross Depending on where you live, they offer an incredible amount of helpful services, from transporting you to medical appointments, to care in the home.  It is hard to give an overall list, as the Commissioners will assess the most important needs in their area, and try to step in and fill them.  Go to their website to find out what is available in your region. There may be a charge for some services.                                                                                                 Red Cross and Red Crescent are in countries all over the world.  See your local branch for access to their services.  http://www.redcross.org.uk

 

Breast Cancer Care 0808 800 6000 or 020 7620 0077                            www.breastcancercare.org.uk

 

Breakthrough Breast Cancer 08080 100 200 www.breakthrough.org.uk

Cancer Club’s founder, Christine Clifford Beckwith, is just my type of person.  Waking up in the middle of the night, she started to think of the humorous side of cancer, and from this came a stream of cartoons – which she has turned in to books.  She founded The Cancer Club®, an organization that specializes in marketing humorous and helpful products internationally to help people with cancer.  The club has a newsletter, and to see one of her cartoons click on Hair, Hands and Feet, and you can order these books by clicking on the Amazon icon or direct from www.cancerclub.com

Cancer Myths The Canadian Cancer website has an excellent section exploding ‘Cancer Myths’.  Look up the myth and the reality under Cancer Myths on www.cancer.ca/Canada wide and type in Myths in Search window.

Christie Hospital This hospital is probably THE leading cancer treatment hospital in Britain. There is an informative website, even if you aren’t an in-patient, and full marks to them – under Complementary Therapies they have a short list of other centres that provide these services in the area.  www.christie.nhs.uk

Clinical Trials – there is nothing to stop you, if you wish, asking to join with any trials you think might be useful. If you are treated privately, nurses have told me that they think it a shame that private patients lose out on this. Obviously you will ensure that, as far as you know, these trials are conducted in the most professional way possible – and you should be aware there is always a risk. To find out what’s going on                                        http://www.cancerhelp.org.uk/trials/trials/default.asp

Cancer Advocacy Very useful site for many pieces of info about cancer.  http://www.canceradvocacy.org/toolbox/

Cancer Counselling Trust www.cancercounselling.org.uk 020 7704 1137

Cancer Information Support Services Set up in Wales to provide Information and a Helpline.  01792-655025  www.ciss.org

Cancer Research UK 0808 800 4040  0207 7121 6699   www.cancerresearchuk.org Don’t be put off by name – this is one of most sensible and useful sites with accurate and helpful information, with with a world-wide reputation for excellence.   They have useful info also on www.cancerhelp.org.uk They also have an interesting free newsletter: subscribe by applying to  cancer.spotlight@cancer.org.uk

CARERS ORGANISATIONS IN UK:

Carers Trust (merger of the Princess Royal Trust and Crossoads Care)                      England  0844 800 4361;  Scotland  0141 221 5066;  Wales  0229 009 0087                         www.carers.org               www.youngcarers.net

Carers UK         0808 808 7777  www.carersuk.org.uk           

Crossroads Caring for Carers (Northern Ireland only)   028 9181 4455                                 www.crossroadscare.co.uk

www.chemocare.com Scott Hamilton was one of world’s top ice skaters, then    developed cancer.  He now fronts up webinformation sites such as this one.   Just about every side effect from chemo is listed, and some from hormonal drugs.  The site could be useful to print out and who any doctor who doesn’t believe your side effects could be caused by drugs.  It also gives some very sensible, albeit limited, advice on dealing with many side effect problems.

Cyclists Fighting Cancer

provide bikes, trikes and equipment to children and young people whose lives have been affected by cancer.  Their primary aim is to help children to reintegrate and rehabilitate after treatments in a fun and exciting way. Many of the Fund-raising events have a cycling theme, and if you like cycling, joining in as a good way to get exercise.

They also have a good fund-raising idea – offering a T-shirt that will stand out at sports events.  If you donate £50 or more, you get the T-shirt – and knowing human nature, someone goes onto the website to donate a tenner, but seeing the message will encourage them to be more generous!  www.cyclists.org.uk

Complaints

Trying to get a reply out of the NHS when something has gone wrong makes most patients give up – which could be said is what ‘they’ want!  However, you can have an Advocate to help you negotiate the minefield:  POhWER is an organisation that supports  you when making a complaint, has a self-help pack, puts you in touch with helpful people, and can meet you, go through paperwork and come to meetings.  0300 456 2370  www.pohwer.net

The Daisy Network. Information if you have suffered a premature menopause.  www.daisynetwork.org.uk

DANA FARBER CANCER INSTITUTE This American cancer centre, based in Boston, USA,  is acknowledged to be one of the most important cancer centres in the world, and consistently rated by doctors, patients and the press as one of best in world,  Its website is extremely helpful and there are special sections for patients written by patients!  Much of the information on my website, especially for Cancer in the News, comes via helpful contacts at this center.  And on a personal level I have found they are now the source I turn to first when I have a problem.   www.dana-farber.org More information under USA below.

DISABILITY, WELFARE RIGHTS AND BENEFITS
You are not alone if you find you are having to fight for what is lawfully your right: organisations are there to help.  When I needed the Council to do something, their response was “if we do this for you, it could set a precedent for other disabled people”. I just phoned Macmillan – they offered a grant – and although I said I didn’t need this, I used the offer to shame the Council into doing what they should be doing.                                                                                                                       The following have seen it all before, and are mines of useful information.   So phone or contact these organisations – they are incredibly helpful.

* Age Concern www.ageconcern.org.uk 0800 00 99 66                                                                                                                                  * Citizens Advice Bureau www.citizensadvice.org.uk Scotland www.cas.org.uk
* or see phone book for local number
* Disability Alliance 020 7247 8776  www.disabilityalliance.org

* Disability Law Service www.dls.org.uk 020 7791 9800
* European Disability Forum www.edf-feph.org

* Disability Now -magazine and website. www.disabilitynow.org.uk 020 7619 7323
* DISS – Disability Information Services www.diss.org.uk 01372-841 395
* RADAR www.radar.org.uk 020 7250 3222
* Community Legal Service 0845-345 4345 http://www.cl;sdirect.org.uk
* Scottish Legal Aid Board (Mon-Sun 7 anm – 11 pm) 0845-122 8686 www.slab.org.uk
* Northern Ireland Legal Services Commission 028 9040 8888 www.nilsc.org.uk
* Dept. Work and Pensions – Disabled People and Carers 0800 88 22 00 www.dwp.gov.uk
* Northern Ireland 0800 22 06 74
* Disability Living Allowance / Attendance Allowance 08457-123 456
* Carer’s Allowance 01253-856 123

General Council  for Massage Therapy www.gcmt.org.uk

La Roche Posay spa and treatment centre.  They developed the La Roche Posay skincare products, which have now been sold to L’Oreal, but are still prescribed in hospitals and have undergone over 20 clinical trials.

Look Good, Feel Better Set up by the giant Estée Lauder company, their idea has spread into countries all over the world.                                                                                                                                        Not only do they offer an afternoon of fun when patients finish their main treatment, but everyone who takes part goes off with enough make-up to last for several months! 01372-747500  www.lookgoodfeelbetter.co.uk

Lymphoedema Support Network www.lymphoedema.org 020 7351 4480

Macmillan Cancerline 0808 808 2020 www.macmillan.org.uk

Marie Curie Organisation www.mariecurie.org.uk www.mariecurie.org.uk/patientsandcarers is a direct link to patient and carer pages.   This organisation is brilliant at looking after patients needing palliative care  – but also does so much more to help cancer patients.

Medical Records : If you need to see your medical records, and find medics are being obstructive, remind them everyone is entitled to view their own health records. All competent patients may apply for access to their records under the Access to health records Act 1990 and data protection act of 1998    www.bma.org.uk

MedLaw  The MedLaw website  is a self help tool for patients to make applications and appeals for NHS funding for treatment. Information and guidance is provided on the processes to follow, the forms to complete, the evidence required and on the law.  It is written clearly, easy to understand, with a lot of sensible advice.

As they say, “many treatments are not routinely funded by the NHS and these include newer treatments for rare cancers, rare disease, and surgery. Consultants and GP on behalf of patients now have to make applications and appeals for funding under what is known as the Individual Funding Request (“IFR”) process.

For cancer patients, the Interim Cancer Drugs Fund acts as a “back stop” so you can apply to them for further funding for cancer drugs only once you have exhausted the application and appeal process”. 01752 872123 or 07812192832. www.medlaw.eu

Memorial Sloan Kettering is one of most famous cancer centres in the world.  Respected by oncologists worldwide,  it has useful, but cautious, information on http://www.mskcc.org/mskcc/html/1990.cfm (clicking on the publications box on the right side will take you to some journal articles) and http://www.mskcc.org/mskcc/html/58022.cfm

Mesothelioma Center has information on asbestos, mesothelioma, and other cancers that are caused by asbestos exposure (lung cancer, breast cancer, prostate cancer, etc.).   Their goal is to offer a one-stop resource on all asbestos and mesothelioma-related issues ranging from occupational exposure to mesothelioma treatment options.  The site has achieved HON code approval (Health On the Net (HON) and has employed a full staff of writers dedicated to research and writing about asbestos exposure and the diseases that result from exposure to the toxic mineral. In addition, their medical adviser and editor, Dr. Mauricio Salazar,M.D., who has worked in the field of cancer treatment for years, has personally reviewed, edited, and approved all medical information on the site.  (001) 407-965-5755.   www. Asbestos.com

Metastatic Breast Cancer Network gives information, education and raises awareness   www.mbcnetwork.org

National Electronic Library for Health is working with NHS libraries to develop a digital library for NHS staff, patients and the public.  www.library.nhs.uk

Moveonfromcancer.com is a very useful site set up by a Graham Cable, a cancer survivor.  www.moveonfromcancer.com

National Osteoporosis Society For  general information and charity publications phone the general enquiry line on 0845 130 3076,  but if you wish to speak to a nurse about osteoporosis contact the helpline on 0845 450 0230.

Talking to their helpline, they have an active person campaigning and talking to politicians;  this is very much needed as the way we treat this disease, compared to how it is handled in Europe, is disgraceful.    And it can help them with their work if you become a member of the National Osteoporosis Society – to join click here. Membership provides quarterly magazines to bring you up to date with all aspects of osteoporosis as well as supporting the charity’s work.   0845-450 0230  www.nos.org.uk

NHS If you want information about the NHS – What it does, how it works, and how to use it – . It also provides links through to other NHS organisations and local services.  I take no responsibility for accuracy of statements on this website!   www.nhs.uk

NHS DIRECT An on-line health encyclopaedia and self-help guide can be accessed via this website.  I found this very much depends on whom you get to talk to – but at no time did I ever get useful information about dealing sensibly with side effects – normal advice comes down to “ask your GP”.  But worth a try.   www.nhsdirect.nhs.uk

NICE National Institute for Clinical Excellence – the organisation that has to approve drugs before they can be supplied by NHS.  They nastily offer an 0845 number, but you can try the alternative contact number for main reception:  0207 045 2000 and for the Enquiry Handling team +0161 870 3002 (0900 – 1700 Monday to Friday) www.nice.org.uk

Occupational Therapy is one section of NHS which works extremely well – if only you knew about it.  OT  can provide marvellous air mattresses to make lying in bed softer and more comfortable, and when I decided it was too tiring to go in to work every day, and I would work from home, round came Craig to tell me what to do.  This included painstaking advice on the right chair – he got one company to send a trial – sent it back because it cost over £1,000 – then found Matt who works at SitSmart.  He came round, measured up, asked me what I wanted, and I have ended up with a superb chair, in colour I like (blue) and Sitsmart are going to offer a special rate if you mention this website of £136.  01892-510202  www.sitsmart.co.uk

Office of Oncology Drug Products (OODP)  http://www.fda.gov/cder/Offices/OODP/default.htm

PAC (positive free counselling service) 01373-455255

Physicians’ Guide to Clinique Products : this booklet lists ingredients in Clinique products and is invaluable for nurses and doctors who need more info on what’s in product. 01207-271209

Polio – This can affect your cancer treatment;  you may have had this as a child, and totally forgotten it. But if you are having an operation it is vitally important to inform your anaethetist – and to make sure they have read Dr. Spencer’s paper which can be supplied through the Polio Fellowship. My anaethestist totally disregarded the mention on my admission form, and as a consequence it took me about two months to recover from the anaesthetic. When I was faced with a seven-hour operation shortly afterwards at the Royal Brompton Hospital, my surgeon Mr. Mario Petrou, together with Dr. Hunter, took this on board, consulted with my polio doctor, asked me inumerable questions, and read Dr. Spencer’s paper. Result -I sailed through the op. without a single problem. More information from http://www.britishpolio.org . 0800 018 0586.

Private Treatment . Friends might tell you that you will be lonely in a private room on your own;  don’t believe it. Today you are rushed through surgery, and by the time you are waking up and feeling ‘I fancy something to eat’, the doctor comes in and says “you can go home now”. Chance would be a fine thing – but you won’t have a moment to feel lonely! To find a selection of private hospitals; www.privatehealthcare.co.uk .

Prostate Cancer hhttp://www.prostate-cancer.org.uk/info/publications_toolkit.asp

Scotland – CLAN – Helpline and support activities  01224-647000   www.clanhouse.org

The Facts About ….. This website belongs to the Cosmetic, Toiletry and Perfumery Association.  Yes, there will be lots of people who throw up hands in horror at the thought of me recommending a ‘commercial’ site.  But millions  of us who use their members’ products every day, and are grateful that their products keep skin lesions etc. at bay, will welcome the sensible, factual advice on this site about all sorts of ‘new’ words – and what they mean.   In defence of this industry, if one millionth of the things they are accused of by pressure groups came true, there wouldn’t be any skincare sold:  companies would be too scared of being sued.    www.thefactsabout.co.uk

Treatment Abroad. Over 75,000 of us went abroad for treatment last year, and if you want to find out more the company  www.treatmentabroad.net

UKONS     United Kingdom Oncology Nurses Society  has a very information website, but written – obviously for nurses, so has a lot of jargon.  However, for factual information, it is excellent.  www.ukons.org/downloads/index.html

Wahanda is a company with a website giving details of spas and beauty salones across the UK.    Some of them are mentioned on this website, some not, but if you need massage, reflexology or a facial, the Wahanda site should show you the nearest salon.  They do the marketing for many of them, and have come up with what they call MobDeals – these are sent out by email, and basically give you massage, facials, hairdos, etc. at a knockdown price.  I have just had a 90 minute massage and manicure, for which I paid £28 – and it was brilliant.  Well worth signing up for email alerts.
www.wahanda.com

Wales – Tenovus Helpline and support  029 2076 8850  www.tenovus.org

Wheelchairs – if you are having problems, or don’t know which chair to buy, this website has information from other users and was set up by John Dewar, a carer who couldn’t find information www.tell-me-first.co.uk

Work related – Telling colleagues and managers . This is a really sensible site on what and how to tell colleagues you have cancer.  http://www.cancerandcareers.org/women/share_news/how_to_tell_people_you_have_cancer/

OTHER COUNTRIES’ WEBSITES

EUROPA DONNA Over 40 countries in and around Europe belong to this organisation.  See details below.  www.europadonna.org

AUSTRALIA

Breast Cancer Network Australia http://www.bcna.org.au/

National Breast & Ovarian Cancer Centre, Australia http://www.nbcc.org.au/

Prepare To Live – P2L – is a very positive Australian website, aimed at younger people.  Watch the video of the Grim Reaper (complete with realistic and very sharp-looking scythe) being chased away by the young chemo patient.  www.preparetolive.com

National Breast Cancer Foundation, Australia http://www.nbcf.org.au/

BELGIUM Jules Bordet Institute, Boulevard de Waterloo 125,  1000 Brussels, is one of most famous cancer treatment and research centres  in the world. www.bordet.be

Canadian Breast Cancer Network – Réseau canadien du cancer du sein 331, rue Cooper Street, Suite 300, Ottawa, ON K2P 0G5   613-230-3044 ext. 222  1-800-685-8820 www.cbcn.ca

FINNISH SYMPTOM LINE EVERY cancer patient should have access to just such a helpline.   (For more information go to Good Ideas category (click on words in column on right hand side).  www.cancer.fi

FRANCE There is an excellent British-run organisation, run for ex-pat Britons by Britons.     www.cancersupportfrance.info

If you want to go to Europe for more up-to-date treatment, when you are unable to get problems sorted out here, France is probably the most sensible option;  exc ellent treatment, easy access (choice between train, ferry and car, and plane) and a seamless system that doesn’t seem to have waiting lists!  See further info under Treatment Abroad, or go to www.healthspanews.com

Warning! The French do NOT like ‘medical tourists’.  You cannot expect to turn up and wave your EHIC card if your treatment is not an emergency.

Germany A new guide to German hospitals has just been published,  called “Health Made in Germany” by UdoKessler.  It contains helpful background  for international patients, information about 50 hospitals, and details of staff.  www.treatment-in-germany.com.

USA

American Society Cancer www.cancer.org

Association of Cancer Online Resources www.acor.org

DANA FARBER CANCER CENTER This American cancer instiiture is acknowledged to be one of the most important cancer centres in the world, and its website is incredibly informative.  Much of the information in Cancer in the News comes via the incredibly helpful contacts at this center.  www.dana-farber.org

Their page for international patients includes contat information for both adult and pediatric:  http://www.dana-farber.org/pat/becoming/international/default.htm

They also have a Spanish-language site with an overview of services : http://espanol.dana-farber.org/

Dr. Susan Love is a doctor, expert in breast cancer and has an excellent website with sensible, proven information. On the site is a link to latest press releases and articles, mostly American, but that is no bad thing as they are serious about their treatment. Whilst I was being treated this was the site I turned to as being most accurate and informative. www.susanlovemd.com

National Cancer Institute . Typical excellent American Government website full of factual information, that is patient-friendly and gives accurate and sensible information.  Did you know doctors have been using radium to treat tumours since 1903? Very east-to-read diagrams. www.cancer.gov

Oncolink is an American website, written in sensible language with a wealth of information about cancer.  Sadly, their postings about side effects are somewhat dated, but still accurate – and they mention the research done in Dundee into side effects, which have been brushed under the carpet in Britain.  www.oncolink.com

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Polo – an exciting way to spend an afternoon in the open air

Polo Players

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GOING TO A POLO MATCH IS A WONDERFUL WAY TO HAVE AN EXCITING AFTERNOON IN THE OPEN AIR.

If you feel in need of some adrenalin-pumping spectating, an afternoon watching a Polo match is the best way I know.  You are sitting down (well, most of the time) so theoretically the doctors will approve!

But if you have tried to watch a match on TV, it is deadly boring;  you need to be there to experience the thrill of a ball being hit at full gallop right up the 300 yard long ground (three times the length of a football pitch), or hear the ‘comments’ as players try to ride each other off – perfectly legimitately.

MINT POLO IN THE PARK is coming to Hurlingham park, right in the middle of London, and to make it easier for first-time spectators, the rules have been changed slightly.  You won’t have to understand why a ’sandwich’ is  a no-no,  or why players are allowed to purposely bump into each other (known as ‘riding off – if you want to air your knowledge).  Just sit if you can – or stand up and cheer!

If you are in a wheelchair polo players are some of most friendly people around – there are always good places to sit in best position in the stands, provided you inform the organisers before to reserve a space.  And you can usually drive your car right up to the side of the arena, and sit in it if you want.

Hurlingham Park is the spiritual ‘home’ of  British polo, and Teams play by Hurlingham rules, because these took their name from the ground.  But come World War II,  the  ground was dug up to grow food, and polo never returned – until now.

June 4th – 6th 2010 eight Teams from across the World are out to show Londoners how exciting a Fast, Furious and Spectator-Friendly game can be when played at full throttle.

Most of the players will be professionals, i.e.  paid to play.  They are very, very secretive about their earnings – let’s just say the top ones are in the same league as football players, and they go on playing until well into their forties – or fifties.  They are retained by their teams for the ’season’, and somehow they have negotiated six seasons a year -which range over tournaments in Argentina, where the World’s most important tournament takes place;  England (where the No. 2 tournament, Cowdray Gold Cup, takes place), then off to Dubai, Australia, USA, France, Spain, etc. depending on where they are booked to play.jack-kidd-and-kids

SOME OF THE PLAYERS
They will all have a Handicap, which will go from -2 (low) to 10 (best in the world) – the opposite way to golf.

Jamie Morrison, son of the legendary Bryan Morrison,  will be at Hurlingham, with a handicap of 4.

Henry Brett, (6) former England Captain has won every major tournament in the UK and many more around the world.  Gaining his first England cap at the age of 17.

Kirsty Craig, one of the dynamic female players, has played for England in India and Germany.  Polo is the only sport I know where women play equally alongside men.  However, we just don’t have the strength to ‘ride off’, so don’t get high handicaps.

Mark Tomlinson (7) comes from a polo family, headed by Mum Claire.

Piki Diaz Alberdi  (9) is one of top players in world;  this Argentinian always plays his hardest, and is expert at judging a hit to a nicety, scoring from yards out in the field.

Just remember though;  should a pony and player come down, the commentator and spectators will first want to know ‘how is the pony?’, and then worry about the rider.

MINT Polo in the Park is now on sale through Ticketmaster with a special Early Bird offer, and hospitality enquiries direct to the Polo in the Park hospitality hotline on 020 7936 5284.

RETAIL THERAPY

In between matches, you can indulge in retail therapy in the tented shopping village.  Audi cars will be there, Elemis 100511 hp Elemis  569with their wonderful Spa Bus, The Silk Road and other clothes stores with cashmere and silk clothing, Peruvian silver jewellery, shoes, Aspiga and other luxury beachwear companies, suede and leather shops (wives of the Argentinian players always stand out because of their lovely bags and shoes), and other luxury goods galore.  And they accept credit cards!

All tickets give access to Hurlingham Park, to enjoy the Veuve Clicquot Champagne Garden, Pitchside Bars, Luxury Shopping Villages, Pimms Bars, Food Courts, Argentine BBQ’s all the pitchside entertainment and meeting the players. Entrance to Ground from £15 (£10 kids) to Grandstand tickets for Final £45.

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Latest research shows Skin cancer doubling

Cybill Shepherd moonlights at Madame Tussauds ...
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Latest from Cancer Research UK highlights dangers from sun – celebrities aren’t immune

With the death rate from various skin cancers rising every year, sadly it is older people, particularly men, who show most shocking growth rate;  the number of men dying from the deadliest form of skin cancer has doubled over the past three decades.

For younger people, sunbeds have accelerated the growth of skin cancer, and there are moves afoot both in UK and USA to ban these beds, at least for those under 18 – but when will this happen?

One wonders if it was sunbeds that caused such a large number of celebrities to present with cancer?

Melanie Griffith, Cybill Shepherd, President Bush, his son George and Laura Bush, Bill Clinton, Ronald Reagan, Elizabeth Taylor, Princess Michael of Kent,   Scottish actor Ewan McGregor and many others are said to have developed types of skin cancer.

And when famous actors such as Bob Marley sadly died of melanoma, how can we try and ensure we don’t follow in their footsteps?  Bob Marley’s death shows that anyone with a darker skin does NOT have immunity from this dread disease.

Cancer Research UK show figures more than doubling recently,  with a steep increase in deaths from malignant melanoma, especially in elderly men.  Yet they say the disease is preventable.

Caroline Cerny, from Cancer Research UK, says men needed to learn to look after their skin.  “Too often men leave it up to their partners or mothers to remind them to use sunscreen or cover up with a shirt and hat, and even to visit the doctor about a worrying mole,” she said.

If you are worried about a mole, go to a GP.  Dr Jonathan Bowling says “it’s crucial that people go to their doctor as soon as they notice any unusual changes to their skin or moles – the earlier the cancer is diagnosed the easier it will be to treat.”

What else should you do?

1.  If possible wear loose but covering clothing in sunny weather.

Avoid wearing

  • low-slung jeans  – bare flesh at the back is a danger zone
  • sleeveless vests and tee-shirts are a no-no
  • Watch out for the throat area
  • shorts are fun – but slacks and trousers are better, as are long skirts
  • and if you are recovering from chemo – or are bald –  wear a hat

Use Sunscreen with a minimum SPF 15:   30 is better

  • Put on creams at least 15 mins before going out;  don’t rub in, but let the skin absorb them
  • Don’t forget backs of hands; knees;  tops of feet; bald heads; back of neck and throat area
  • Re-apply during the day, particularly after swimming
  • And use an adequate amount.  Don’t scrape it on – slap it on.  You are doing this to prevent a horrid cancer.  Isn’t  your life worth the extra expense of using sunscreen generously?
  • and use DuWop. See below to find out what this is!

La Roche-Posay (LRP), the dermatological skincare brand recommended by over 25,000 dermatologists worldwide has issued the following advice, emphasising the importance of adopting sensible sun safe behaviour to prevent future complications.  Because sadly, skin cancers can take years to develop.

Teenagers spend hours on suntan beds, not caring that they are building up almost certain problems for the future.  Sportsmen and women go out in the mid-day sun without taking proper precautions, etc.

LRP say “Sun creams are an important part of sun protection, but no sun cream can provide 100% protection, so a wide brimmed hat, sunglasses and T-Shirt should be worn in the sun. It is also important to stay out of the sun between 11am and 3pm and follow the British Association of Dermatologists Sun Smart advice. They also have a lot of factual information on their site about different skin cancers, and basic advice about how to treat the sun – because there are also benefits to sunlight, and you don’t want to stay out of it completely.

http://www.bad.org.uk/site/574/DesktopDefault.aspx

Sun radiation consists of UVB and UVA radiation. In the short term, your skin will be visibly affected by mainly UVB rays. But the true extent of the problem is seen through the long-term effects of UVA.

These rays are responsible for premature skin ageing and can cause sun allergies such as heat rash (Polymorphous light eruption) and brown spots (hyperpigmentation) and can even provoke phototoxic reactions when combined with certain commonly prescribed medications. It is therefore essential to choose a broad spectrum UVA-UVB sun cream.

Anthelios XL, provides unparalleled effectiveness and dermatological tolerance to

protect against cellular damage caused by UV rays offering highly effective suncare

protection. La Roche-Posay, has demonstrated the clinical efficacy of Anthelios XL with 21

clinical studies. The combination of patented filters Mexoryl® SX and Mexoryl® XL

enables the Anthelios filtering system to provide efficient protection against the entire

spectrum of UVB-UVA rays. New this year La Roche-Posay introduces a new minimalist

filtering system called Mexoplex® into its SPF 50+ Fluid range, offering the highest UVA

protection ever as well as excellent photostability with a reduced content of chemical

filters.

iS Clinical is the American skin care range that was developed at Washington Cancer Center.  They say they do not manufacturer a fake tan product, however, spokesman Alan Kelly says, ” we do sell a tinted sunscreen in both the standard cream, and a powder form.  Many of our clients use the tinted version at this time of year instead of make-up. They apply the tinted sunscreen and some will also use some blusher to provide definition. That way they receive a full board spectrum UVA/UVB protection all day. I will also be honest and say that some clients find our perfect tint version slightly too dark. In this instance they normally purchase the translucent and tinted version which they can mix together to achieve their desired shade”.

iS Clinical also make an SPF25 Treatment sunscreen to protect the body, which I often use as it moisturises my skin as well.  Double action!

Their products are mostly sold through doctors’ practices, or contact alan@isclinical.ie

Beware! Sun bounces off reflective surfaces, such as water, sea, concrete, etc.  Even when under an umbrella, sitting by the seaside, or on a concrete patio, the sun’s rays can get bounced off the surface, and you end up with horrible burns.  So wear something or slap on sunscreen, even when under the protection of the largest umbrella.  Those rays bounce an awful long way!

And finally – don’t despair

You don’t have to go round looking pale and white – or copy Victoria Beckham and other celebrities who spend hours, – and mega-pounds or dollars – having spray tans.

All my friends have been asking “where have you been?”  I look as it I have been carefully suntanning for the past week on a Mediterranean beach (I wish – the beach part anyway!).  My skin is a lovely colour, thanks to a wonderful self-tanning gel from DuWop.

Calling itself ‘clear revolotion’,  i

this is really a clear, cooling ice blue self-tanner that actually tones and conditions your skin,  provides natural sunscreen and gives you a safe, healthy, glowing tan that develops overnight.

I keep on looking down at my legs – all smooth and golden – and am so proud of them!  And possibly the nicest bonus of all it NO SMELL!

You know that horrid ‘bad grapes’ smell that sticks around you when you wear self-tanning products?  Time and time again I read the blurbs that promised no smell- and found the advertising hype wasn’t true.

But with DuWop there is no smell – no-one would know I had put this on, if it weren’t for my tanned body!  Lovely stuff!

And a weird warning!

Lisa Fayed, writing on About.com Cancer Guide,  for American and Canadian readers,  says “If you drive on a regular basis, you may be putting yourself at risk of developing skin cancer. Whether you hang your left arm out of the window or rest it on the door with the window closed …. the left side of your body is being exposed to harmful UVA rays, especially your face and arm. Window glass may protect you from UVB rays, which cause sunburn, but it does not block UVA rays, which play a role in the development of skin cancer”.

A study published in the May 2010 edition of the Journal of the American Academy of Dermatology shows that drivers are at an increased risk of developing skin cancer lesions on the left side of their bodies more often than their right. In the study, researchers examined the medical records of 1,047 people with skin cancer. They found that 52.6 percent people had skin cancer on the left side of their bodies as opposed to 47.4 percent on the right. Melanoma, a deadly form of skin cancer, occurred much more frequently on the left side — 74 percent compared to 26 percent on the right.

For those of us who drive on the correct i.e. Right side, this obviously refers to our right side!

In the old days you rode on horseback on OUR side of the road – it was easier to draw a sword against an attacker.  But during the French Revolution this was changed (by the French) to walking or driving a cart on the opposite side of the road;  they didn’t want to be reminded of aristocrats, who could afford to ride horses.  Gradually, as Napoleon conquered Europe, he made every country follow the French way.  But the British were never conquered by him, so we still drive on the correct side of the road!  As does half the world!

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Has the Coalition come out with new ideas on health?

Paul Burstow MP addressing a Liberal Democrat ...
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COALITION DOCUMENT SETS OUT DIRECTION FOR HEALTH AND SOCIAL CARE

Andrew Lansley (new Health Secretary) has announced that a new independent commission will be established to advise the Government on the future funding of long-term care and the NHS will be reformed to improve patient outcomes.

Er – hasn’t anyone told the new boys every time a new commission is set up, this costs money, time and loss of trees from the forests?  And is usually dis-banded the next time someone has a bright idea?

Lansley says, “this document sets out a clear message to the NHS. That our united vision is for a healthcare system which achieves outcomes that are amongst the best in the world, and free from day-to-day political interference.

“We will cut bureaucracy and hand back power to clinicians and patients to ensure they are at the forefront of decision making about NHS services. The proposals will drive up standards of care, eliminate waste and lead to better outcomes that improve the health of the nation.”

Well, if they DO manage to do that, perhaps this commission might have some validity.

Apparently this commission is to report within a year; break down barriers between health and social care funding to incentivise preventative action (i.e. jobs for the boys who haven’t yet found a cosy niche).

extend the greater roll-out of personal budgets to both older and disabled people  and carers to give more control and purchasing power – (has anyone managed to get this working for them yet?)

Now, proving they are full of inclusion and all the PC-speak, we bring in the LidDems:

Care Services Minister Paul Burstow (he’s a LibDem – that’s his pic above) said: “Urgent reform of the social care system is at the top of our agenda. The current system is unsustainable – it cannot go on as it is. Our first step to reform is to establish an independent commission  We’ll set out further details and the terms of reference soon.”

The Government has also today announced that it will not be commencing the provisions in the Personal Care at Home Act, 2010 relating to free care at home. However, the Government will be considering what more can be done on re-ablement and carers’ breaks in the light of available resources.  Bad luck those who were hoping that the burden of paying for providing care so their loved one can die at home, will still be a massive burden for them – and they may have to sell their home to pay for this.

Proving to all the sceptics (like myself) that the new coalition hasn’t started squabbling  in the nursery – yet.  But it is copying the last regime with talk of setting up commissions (i.e paper shuffling).

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Cancer Myths Exploded

An example of combustion
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Exploding some Myths about cancer – and the truth behind them

Pam Stephan writing on About.Com asks, “what do you believe about the risk of getting breast cancer? Are your beliefs based on truth?
Here are several popular myths, and the facts. Make smart choices and reduce your risk”.

1. Myth: Antiperspirants cause breast cancer

Not true. There is no research that proves that the use of antiperspirants can cause breast cancer. Some medical studies have been done on tissue samples from breast cancer patients, and in some cases, the chemical substance parabens was found, both in antiperspirants and in some tumors. But there is no clear link between antiperspirants and the start of breast cancer. Don’t toss out your deodorant yet! Read more in an article on urban legends.

2. Myth: If breast cancer isn’t in my family, I can’t get it

Not true. Anyone with breast tissue, male or female, is at risk for breast cancer. The risk is higher for women. Add increasing age to having breast tissue, and your risk also increases. If blood relatives have had breast cancer, then you have a bit higher risk than someone with no history of the disease in their family. Check with your doctor and review your family health history, to be on the safe side.

3. Myth: A diagnosis of breast cancer is the same as a death sentence

Not true. Breast cancer is more accurately detected and treated at an early stage, before it spreads, as compared to 20 and 25 years ago. Now, 80% of women who are diagnosed with breast cancer and who do not have any metastasis (spread of cancer) will survive at least 5 years beyond their diagnosis, and many live even longer than that. Even if the cancer has spread, new treatments and therapies can help improve survival rates and quality of life. Early detection is essential.

4. Myth: Only older women get breast cancer

Not true. The risk of getting breast cancer does rise with growing older, but young women (birth – 39 years old) can get breast cancer. Between the ages of 40 – 59 the risk increases to 4%, and between the ages of 60 – 79 the risk is 7%. If you live to be 90 years old, your overall lifetime risk is 14.3%. Develop a healthy lifestyle and reduce your risk. Your body is worth the extra work it takes to enjoy a healthy life.

5. Myth: Birth control pills cause breast cancer

Not true. In the past, birth control pills used a higher dose of hormones to reduce the possibility of conception, but the hormone dose created only a slightly higher risk. Today’s birth control pills do contain the hormones estrogen and progesterone, but the doses are lower than the old pills. The lower doses of hormones are not linked to higher risks of breast cancer. Consult with your doctor or nurse practitioner for their professional opinion on your use of birth control pills.

6. Myth: A high-fat diet causes breast cancer

Not true. Despite several medical studies on this issue, it can not be proved that a diet that is high in fat will cause breast cancer. Excess body weight in the form of fat results in higher production of estrogen, in addition to that which your ovaries already produce. That extra estrogen may fuel some types of breast tumors. A diet that is low in saturated fats is good for your heart health (lower cholesterol) as well as your breast health (normal estrogen levels.)

7. Myth: Breast cancer is in my family and I can’t avoid getting it

Not true. You are a unique person, and your body is made up of a combination of inheirited qualities. Even if you are tested for breast cancer genes, you can still take control of several aspects of your overall health. A healthy diet, not smoking, very little alcohol, regular exercise, can all add up to a lower risk for you. Here are ten risk-reduction strategies to get started on.

8. Myth: Having kids and breastfeeding is guaranteed protection

Not true. While it is true that having at least 2 pregnancies before you’re 30, and breastfeeding your babies can lower your risk of getting breast cancer, it is not a guarantee of protection. However, to further lower your risk, add regular exercise and a healthy diet, don’t smoke and drink very little alcohol. Have regular screenings and annual checkups with your doctor, to make sure that you have a baseline on all your critical health tests. You and your children are worth the effort!

And don’t forget the Canadian Cancer website has an excellent section

Exploding ‘Cancer Myths’.

Look up the myth and the reality under Cancer Myths on www.cancer.ca/Canada wide and type in Myths in Search window.

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Mobiles and Cell phones are still under suspicion

On The Streets of NYC
Image by FaceMePLS via FlickrCan we get cancer from using them?

Can we get cancer using them?

The first results of the long-awaited, 10-year, international Interphone study finds little evidence that cell phones cause either glioma or meningioma, the two most common types of brain cancer. This is the first study in a series being undertaken by the International Agency for Research on Cancer to assess the overall cancer-risk of mobile phone use by 2011.

In summary, the study, to be published May 18 in the International Journal of Epidemiology, says that:

Overall, no increase in risk of glioma or meningioma was observed with use of mobile phones. There were suggestions of an increased risk of glioma at the highest exposure levels, but biases and error prevent a causal interpretation.

BUT – the report warns The possible effects of long-term heavy use of mobile phones require further investigation.

And that is where the scientists cover themselves – which should give us a warning.

There are too many ifs and buts – and what I find frightening is scientist friends of mine are not only forbidding their children from using mobiles, except in an emergency, but when attending an international conference you are less likely to see eminent professors using them.  In a way that is good – they are back to old-fashioned communication with each other.

No-one has done a study on other ways mobiles can cause death:

1.  The pedestrian who wanders across the road, arguing so vociferously on their phone they walk in front of traffic.

2.  The cyclist who is talking on a mobile, and doesn’t hear a car hooting to give warning.

3.  One fact we DO know – it has been proven to be dangerous to talk on a ‘hands-free’ phone whilst driving.  Professor Brown at Cambridge, and other research establishments in USA, did tests to measure reaction times of drivers using hands-free phones.

  • Tests show that average reaction time to an emergency is 1.5 seconds before your brain activates your foot to hit the brake.
  • Average reaction time if on hands-free phone before your brain activates your foot to hit the brake is 2.7 seconds.

Frightening.

And Police in UK are now trying to stop hands-free use by drivers when driving.  Some recent cases that came to court majored on drivers involved in accidents.  Police have gone through records to see if a driver was using a hands-free phone within the last few minutes before a crash (it is reckoned our brains take about ten minutes to get back into gear after finishing a conversation).  If the driver HAS been using a phone, it can be jail.

More information can be found in my other post, “Does using mobile or cell phones cause cancer?

If you have concerns, the Environmental Working Group’s (EWG) research team has issued a guide to cell phone radiation, rating more than 1,000 cell phones.

And if you are thinking of replacing your mobile or cell phone, they have produced an online guide on  http://www.ewg.org/cellphone-radiation.

“We would like to be able to say that cell phones are safe,” said Olga Naidenko, Ph.D., EWG Senior Scientist and lead author of the study. “But we can’t. The most recent science, while not conclusive, raises serious issues about the cancer risk of cell phone use that must be addressed through further research.  In the meantime, consumers can take steps to reduce exposure.”

Better consumer information is vital. Dr Siegal Sadetzki, an epidemiologist and lecturer at Tel Aviv University, has recently carried out research that linked salivary gland tumours with the use of mobile phones. She says that even if the risk is small, the fact that four billion people use mobile phones worldwide mean it could result in “great damage” and a “precautionary approach” should be adopted by issuing safety advice with mobile phones.

Dariusz Leszczynski, a research professor at the University of Finland, said the current safety standards are not sufficiently supported by science because there has not yet been enough research into the long term effects of mobile phones on humans. He also said health warnings should be issued with mobile phones advising users to hold the devices away from the head, text where possible and use speaker phones.

Health agencies in Switzerland, Germany, Israel, France, the United Kingdom, and Finland, have issued warnings to limit cell phone use, particularly by children, whose softer, thinner skulls are less able to shield the brain from radiation. Scientists have found that children’s brains absorb twice as much cell phone radiation as those of adults.

However, in one positive step, EWG urges concerned consumers to take action and tell the federal government that cell phone makers should be required to disclose each phone’s radiation output on the label.

The report also offers safety tips for reducing cell phone radiation exposure. Among them:

  • Use headsets and the speakerphone option if available.
  • Text more, talk less.
  • Stay off the phone when few bars indicate a weak signal.

EWG’s new interactive database, based on technical specifications of cell phones currently on the market and some popular older models, can be searched by model. A separate database details radiation levels of smart phones.

EWG’s top 10 phones, based on low emissions:

1. Samsung Impression (SGH-a877) [AT&T]

2. Motorola RAZR V8 [CellularONE]

3. Samsung SGH-t229 [T-Mobile]

4. Samsung Rugby (SGH-a837) [AT&T]

5. Samsung Propel Pro (SGH-i627) [AT&T]

6. Samsung Gravity (SGH-t459) [CellularONE, T-Mobile]

7. T-Mobile Sidekick [T-Mobile]

8. LG Xenon (GR500) [AT&T]

9. Motorola Karma QA1 [AT&T]

10. Sanyo Katana II [Kajeet]

EWG’s list of highest radiation phones:

1. Motorola MOTO VU204 [Verizon Wireless]

2. T-Mobile myTouch 3G [T-Mobile]

3. Kyocera Jax S1300 [Virgin Mobile]

4. Blackberry Curve 8330 [Sprint, U.S. Cellular, Verizon Wireless, MetroPCS]

5. Motorola W385 [U.S. Cellular, Verizon Wireless]

6. T-Mobile Shadow [T-Mobile]

7. Motorola C290 [Sprint, Kajeet]

8. Motorola i335 [Sprint]

9. Motorola MOTO VE240 [Cricket, MetroPCS]

10. Blackberry Bold 9000 [AT&T]

 

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As you keep fit, you are doing your bit to save carbon emissions

Barefoot Running on the Treadmill
Image by LToTheYnn via Flickr

Lowering Carbon Emissions

Jogging along on the Treadmill, or going mad on the exercise cycle, did you stop to think that you might be doing your bit to lower carbon emissions?

Probably not – but if you are exercising in one of the gyms that belong to the  UK’s largest gym group, Fitness First, you are doing your bit to save the Environment.

Fitness First has become the first company of its kind to be awarded the Carbon Trust Standard.  Recognising the efforts made by the group, the Carbon Trust Standard Company has recognised their efforts for reducing its carbon emissions over the last three years by more than 7 per cent throughout the business, which includes 160 gyms in the UK together with the head office in Dorset.

“The company has worked hard to reduce emissions and it was tremendous to have these ongoing efforts recognised by the Carbon Trust Standard”, according to Director John Gamble.”We have a firm commitment to the environment and to be the first major gym chain to reach this standard reinforces the fact that we continue to set benchmarks in the industry,” said Mr Gamble.

But it wasn’t thanks to members cycling away – initiatives which helped Fitness First achieve the standard included  investment in systems to control air conditioning, lights, ventilation and saunas. The company is  the largest privately owned health club group in the world, 160 Fitness First clubs In the UK with over 405,000 members.

Now as I shiver on my way to the gym, could someone please tell me what has happened to Global Warming?  The unseasonable Zero degree temperatures are getting me down.  I sometimes wonder if we are doing to much energy saving and this is reducing the temperature?  Just a thought.

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A patient passport will help cancer patients feel less 'abandoned'

Time Stamp on Every Document
Image by hawkexpress via Flickr

Going Forward

Labour started the idea of  a ‘passport’ for cancer patients, and the details were being worked out as the election was called.  This was in answer to the many patients who had complained that they felt let down and abandoned when their treatment finished.

At a press conference called by NICE to explain what the organisation had done for breast cancer patients, there were two obligatory patient representatives, perched uncomfortably at each end of the platform – one sneeze and they would have fallen off;   obviously there to show NICE’s commitment to ‘inclusion’.

NICE’s Chairman spoke, then got his panel to talk about what they had achieved.  As an afterthought he asked the two patient reps.  for their thoughts.

We felt abandoned“, was their damning verdict.  The press grabbed them afterwards, leaving NICE officials standing chatting to each other.

So there were obviously strong voices calling for some sort of programme post-hospital, and someone came up with the idea of the Patient Passport;   a written record of a patient’s medical history from the time of diagnosis, through  surgery, radiotherapy and chemotherapy, up until the time they finished these treatments and were told they only had to worry about follow-up appointments in three – six months.

This is when patients feel they are abandoned, as there is no-one officially they can turn to with the many, many worries they have about side effects if they are on hormonal drugs, possibility of a recurrence of cancer, joint pain, hot flushes and other after effects.

Now, the passport will be given to the patient, who then takes it to their GP.  It will then be up to the GP to offer advice and care in-between hospital check-ups – and the average GP is probably going to say they know nothing about cancer – and won’t have received any training to answer the multitude of questions that they will be expected to discuss and provide answers.

So Breast Cancer Care hosted a meeting of patients and doctors to discuss how this would work.  One major stumbling block that came up was the amount of QOFs GPs receive for an appointment with a cancer patient.

QOFs = quality outcomes framework.  Yes, another stupid NHS ‘quango-speak’ term, but it is important, as it is the number of points a doctor accrues to claim fees paid them by the NHS.  A GP gets 6 QOFs when a cancer patient has an appointment;  someone with diabetes, etc. gets 90 QOFs.  The stupid system goes on – ever wondered just why doctors are so keen to give us flu jabs, but won’t discuss the pros and cons in case one of our drugs might react with the jab?  Yes, they get paid for giving us a jab.  No, they don’t get paid for discussing if this is right for us.

So, for me, the most important part of the session at BCC’s office was discussing with doctors the practicalities of explaining to GPs if they were or weren’t going to get more QOFs now for dealing with cancer patients.  When I tackled Mike Richardson, the Cancer Czar about this, he brushed it aside saying” QOFs aren’t on the agenda until 2012″!

Now, even in the shortest possible form, a ‘passport’ will contain many pages, much of which will be highly complex information about degree of cancer, type of operation, what radiotherapy was administered, and details of chemo drugs.  We might understand this after we have lived with the ‘doctor-speak’  for so long, but the average GP ….?  And when will they get time to read and absorb the pages of information?

As the passport idea goes forward, will it be yet another idea put forward by mega-expensive consultants, and doomed to failure? Or will doctors be given more QOFs, and training in how to understand cancer treatment?  I don’t think so.

The passport is a marvellous idea in theory, but practicalities have to be ironed out before millions of NHS money is spent – and expensive documents end up in the recycling bin.

So ….

In the meantime, it might be worthwhile looking at WHAT’S NEXT – a booklet written by Breast Cancer Nurses in the West London Cancer Network, and an American website, Journey Forward.

WHAT’S NEXT is a loose-leaf file full of practical advice, which is to be given to cancer patients at certain London hospitals when they finish with hospital treatment.  Victoria Harmer, Breast Care Nurse Specialist at St. Mary’s Hospital, and one of the most practical, sensible and helpful people I have come across, helped write it for the West London Cancer Network.

Talking to Victoria is like being privy to a fantastic Aladdin’s box of useful and practical information about cancer, and since she handed me this file, I have been diving in, thinking “why wasn’t I told this?”

e.g. I was NEVER told about the importance of being alert to the possibility of Lymphoedema, and what to look for.  When I developed it, in typical British fashion I thought if I ignored it, it would go away.  Now, thanks to non-advice, I have it in arms and legs, and it is a devil to manage.  No-one in ‘my’ medical team said anything, and it wasn’t until I went to Germany for treatment for some cancer side effects that they picked it up, gave me a lecture about managing the condition, and said I needed to seek treatment when I returned home.

Journey Forward is an online passport, which can be zipped across to any doctor or specialist whom you have to see.  Not only will it save you having to fill out countless forms each time you see a new medic, but it will keep your data stored when you might have forgotten what happened to you.

Designed for the US market by National Coalition for Cancer Survivorship, UCLA Cancer

.Survivorship Center, Wellpoint Inc. and Genetech, it has some good ideas that we could adapt –

.if the will were there at the Dept. Health.

www.JourneyForward.org

but

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