Monthly Archives: October 2009

Are Old Wives' tales fact or fiction?

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It seems as if some old wives’ tales have truth in them –

Start the day with a good breakfast – yes, everyone today is saying this (see article about breakfasts)

Carrots help you see in the dark – yes, it is proven that Vitamin A is good for eye health, however, there would not be enough beta-carotene (which contains Vitamin A) in one portion – but they should be included in your diet as this can help.

Fish is good for the brain – Omega-3 found in fatty fish helps the brain function, which is an aid.

Bread is good for you – yes, if it is wholegrain or wholemeal as it is a source of Vitamin B, fibre, calcium and energy.

Sunshine makes your bones strong – so although we should be careful when outside, the benefits of sunshine can be an added bonus.

Clean up your plate – yes, it saves wasting food, but not such a good idea if you have had enough – and helps to put on weight.

An apple a day keeps the doctor away – Apples contain antioxidants and pectins, which is a soluble fibre that is effective in lowering cholesterol.

Spinach makes you strong – Popeye had something there, as spinach contains calcium and lots of other goodies which all help to produce red blood cells, etc.

And A little of what you fancy – all experts are agreed that a little – does you good!

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Sensible books when you can't take another 'patient survivor' book

Cover of Trick or Treatment book
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Trick or Treatment – Simon Singh and Edzard Ernst – Bantam Press £16.99 hardback.

My e-mails are full with offers of the latest ‘cancer’ treatment, from goji berries to vitamin supplements. But please don’t send them. They generally worked for the author – but not for me. But I did think that perhaps I was too sceptical, as so many people swear by everything from coffee enemas to feng shui.

So anyone who is told “you must try this” now has TRICK OR TREATMENT, a marvellous new book that takes all the therapies, treatments and supplements we are offered, and de-bunks most of them scientifically. The book explains and tests the theory behind alternative medicines, and analyses if they work by evaluating scientific research.

Authors Simon Singh and Edzard Ernst have spent the past 15 years testing – and have written this book which was ‘music’ to me – although people peddling alternative medicines won’t be very happy. As the research in the book is evidence-based, their findings have a scientific background, and they have come to the conclusion that most of these treatments just don’t work. Some of those on which whole cancer treatments are based are discredited and described as ‘potentially harmful’.

I loved their description of Feng Shui – “based on biologically implausable concepts and there is no evidence to show that it works. A competent interior designer can probably offer equally good advice. …no evidence to show it does anything but enrich those who promote it”.

Colonic irrigation, and other treatments such as enemas, are de-bunked and dismissed, and of colonic irrigation they say it is “ineffective and dangerous”. Many so-called cancer centres are not going to like what they read – but do read it – you could save yourself a fortune in ‘airy-fairy’ medicines if nothing else.

Whilst I don’t decry alternative treatments, believing if it works for you then go for it; these are to be taken cautiously, and are not for the majority. Belief is a strange but potent force, and what works for someone because they believe in it, should not be lauded as THE cancer treatment – because as this book proves, so often they aren’t.

However, main-stream massage is explained in a simple way, and the book tells you which ones are useful, and which are just nice sounding but not proven.

TAKING CONTROL OF CANCER This is one of the most sensible books I have read, written for cancer patients.  Packed full of helpful information, it has factual, sensible and easy-to-read information about treatment options, choices, self-help and a host of other useful hints and tips.  I read it through at one sitting, and wished I had had it at the beginning of treatment.  Written by Beverley dan der Molen, who is now information officer for the Paul D’Auria Cancer Support Centre, the contents are clear, concise and written in crystal clear English, even though Beverley is a medical professional!  But she does not use jargon, instead explains what it all means.    Class Publishing  ISBN 1-85959-091-8  Contact Paul D’Auria Centre


A clear and concise guide to this minefield, covering Aromatherapy, Yoga and just about everything in between.  There is some very interesting information on what benefits cancer patients, and a large section on herbal medicines, with clear, easy-to-read risks for each, and a sensible Conclusion covering benefits or adverse effects for everything mentioned.  Oxford Univesity Press

Even the Eyebrows (about to be published) by Sharon Morrison, who pulls no punches in a humorous and informative book on her cancer treatment. Not afraid to stand up to the ‘bullies’, she takes one through the problems (with sensible tips about handling this like diarrhea that comes suddenly in the street, etc), and discussing ‘cording’ – which if you get it you realise no-one tells you about this.

Traditional Herbal Medicines This is an incredibly comprehensive book covering just about every herb you have ever heard of, and hundreds you probably won’t.  Each herb is described in depth, and has two extremely useful Paragraphs:  ADVERSE EFFECTS  and PRECAUTIONS.  To be read very, very carefully, and digested.

Compiled by Dr.Lakshman Karalliedde, Dr. Indika Gawarammana and Dibbie Shaw, they say, “Traditional medicines have remained popular in many parts of the world and have been regaining ground universally because they are ‘natural’.  But go on to say that natural does not necessarily mean gentle or safe – in fact reading the book has made me very very suspicious of a lot of familiar plants.

The book covers Chinese, Afro-Caribbean, Unani and Ayurvedic traditional medicines in depth, and is a fascinating if scary read.  Hammersmith Press or from Amazon.  £19.99

In-depth articles written for healthcare professionals with info from around the world

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Helpful websites with cancer information from around the world

I wanna hold your hand
Hands reach out via Flickr

It can be helpful to see

what happens around world

Some of the best information for those who speak English are to be found from American, Canadian, Australian and European sites (these are usually in English too). Continue reading

How to lobby an MP – effectively

The British Houses of Parliament, London

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Every year Breakthrough Breast Cancer (BBC) organises the Westminster Fly-in, a very effective day for members to lobby their MPs for better cancer services.

This year the mood was upbeat, not least because BBC’s three research units have had some notable success recently.

It’s the 10th Anniversary this year for the Fly-in, and over 50 MPs crossed Parliament Square to meet up with constituents lobbying on behalf of BBC’s two hot topics:

* Left in the Dark (for better diagnosis)

* and Improving Lymphoedema services.

At the same time Andy Burnham, (current Health Secretary) was admitting elderly patients receive worse health services, in particular for cancer diagnosis., and Burnham’s own department was admitting  “Britain’s survival rates for older cancer patients are below those of other European countries”.

This was underlined by a comment from the floor during a debate at the Fly-in,  that old people don’t complain in case they might be victimised.

MP after MP repeated the official (World Health Organisation) statistics, that our cancer survival rate for all ages is far worse than in Europe – with some strong words used to illustrate the disparity.

Whilst BBC are asking that the NHS adhere to the promised two week period for referral for diagnosis (and not 14 working days as some Trusts are trying to do), Conservative Health spokesman Mark Simmons was hitting home that Switzerland has just upgraded its referral service time from 5 days to 3 from preliminary enquiry.

‘Election year’ was another point hammered home by BCC. This is the year that we can get out and ask – and ask – that MPs do something about improving cancer services, whilst they are in a mood to help constituents.

However, speaches gave out some reassuring information.

If Conservatives get in they have promised that

* NHS funding will be ring-fenced

* To speed up the NICE process

* To provide more Clinical Nurse Specialists

* the NHS will be more ‘patient centric’ (whatever that means!)

* Money for more single rooms to be ring-fenced, but they to be offered as patient’s choice.   Apparently there is money to provide single rooms;  studies have shown that it actually cuts down on nursing provision as families handle a lot of care (which in wards is left to nurses); and of course this cuts down risk of infection.

So don’t forget to hold them to it, after the next election.

And although they fielded some excellent MPs, especially Mark Simmons, the comments around the tables wondered if the Conservatives get in, Shadow Ministers who understand their role will be dumped for ‘new’ people who haven’t any idea.

Delving around, speakers admitted that there is money for improvements, but often PCTs don’t know what to do with it.  Not surprising – my local PCT has no data to tell me where Lymphoedema clinics are in the region, and hasn’t a clue what GPSIs are (GP with special interest – i.e. cancer).

As MP Mark Simmons said, “central control diktats from Richmond House haven’t worked”.

It came up in discussions that in the NHS, expensive equipment was often only used from 9 – 4; yet in the private sector this ran for 11 1/2 hours. A nurse said she couldn’t understand this, as she worked 12 hour shifts, so it would be easy to use the equipment, with its massive capital expenditure, for many more hours and so reduce backlogs for investigations.

However, there were a few MPs who made appointments but never bothered to turn up.  Very disappointing for their constituents – some of whom had travelled a long way to get there.   And of course, the cost to Breakthrough – who have better uses for their donations than to waste this on MPs with no manners.

One was contacted half an hour after he was supposed to turn up; his Secretary blithely said, “he has been double booked”.  Doesn’t say much for his efficiency.

Not only did these MPs alienate people, but they missed speaking to a very informed and articulate group of powerful people.

As one MP said, “it’s a pleasure to be lobbied by a CAN member(Campaigns and Advocacy Network) – you are so well briefed”.

More information Breakthrough Breast Cancer

Sponsors: Novartis Pfizer Roche .

A digest of this article appeared in PRACTICE NURSE 11th December, 2OO9.

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Using Internet

Lady with Lap Top
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Get cancer – and all of a sudden you become an expert Internet surfer.

There is no doubt that Internet Information has improved by leaps and bounds recently, and today there is a lot of very, very useful information available.  Best sites I have found are Cancer Research UK – their latest posting gives helpful information about what to look for if you are an Internet ‘baby’:

And the American websites such as Dana-Farber, MD Anderson, Sloane-Ketting, Mayo Clinic, etc.

These American and Canadian websites are excellent and written in patient-friendly language.  Look up website addresses in the Contacts category – especially the Canadian Cancer Assn’s helpful site on ‘Cancer Myths’ – guaranteed to explain why you don’t need to worry about anything from deodorants to plastic bottles!

Don’t worry about ‘bad’ sites – it is surprising how quickly one develops an understanding of what websites to avoid – but anything that starts with “How I cured cancer by ……. ”  Or “What doctors don’t want you to know……  ”  I avoid!

Happy surfing.

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HEALTH TALK ONLINE  Interview about Breast Cancer by Suman Prinjha of University of Oxford Dept. Primary Care

TOTAL HEALTH :  Web magazine for Doctors           Patient Week

Italy approves British remedy as safe Natural Remedy for Morning Sickness

Posted by ? October 2, 2010 ?

About Insurance:

On Dept.Health’s own website

NHS future forum ‘listening’ events | Abetternhs’s Blog

About.Com writes about Survivors – and helpful information

I was impressed by all the information, the honesty and hard work that was put into finding answers, addressing questions and helping with just  the everyday experience of cancer. For those of us who have gone through the disease, this is so refreshing.  It is hard to get answers at times and equally hard is answers to what to really expect. Not everyone likes to hear the hard brutal truth and because of that we get the “sugar-coated” end or sometimes even worse, we are just expected to deal with what is sent our way.  Not with Verite Reily Collins!  Ms. Collins tackles some of the tough questions, and the biggest one of all Tamoxifen!

and Search Results:

Verité Reily Collins is a Travel and Health Writer as well as a breast cancer survivor. She lives in Great Britain and writes about coping with recovery and

PRACTICE NURSE MPs lobbied on cancer services.  11th December



Managing cancer treatment side-effects  14th Aug. 2009  (most recent)

European Approach to Cancer Care   –     12th December issue  pp 32

WOMAN My Breast Cancer Diary

YOGA MAGAZINE Comforting Cancer   ;  Cancer Awareness   ;Recovery after Surgery

ARABELLA Overcoming Cancer

THIS FRENCH LIFE Website  Info on Cancer Treatment in France

LIFESCAPE MAGAZINE Cancer Resource Centre
“Hot Air From Health Minister” – published on

Self Help Website

Well-known Journalist Simone Costello has put this site up on her blog

Cancer Association of Namibia recommends :

Physio works with exercise


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I tend to put Exercise and Physio together.

Both will help enormously in most cases to get you  fit again.                                                                                                           They are both hard physical work!                                                    And often work in tandem.

A number of Chartered Physiotherapists in the UK work in oncology and palliative care.  There are 3 main treatment routes if you are resident in the United Kingdom and wish to see a physiotherapist:

Via the NHS
You will first need to make an appointment with your general practitioner (GP) and then ask to be referred to see a physiotherapist. You can discuss with your GP how you think being referred to a physiotherapist who understands cancer could help you.  Onward referral will be at the discretion of the GP. Contact your GP or NHS Direct

Via private practitioners
If you are in a position to pay for your own treatment, there are a large number of physiotherapists across the UK offering treatment in dedicated physiotherapy and sports injury clinics as well as many who will treat people in their own homes. To find a local private practitioner within the UK use the physio2u directory ( The physiotherapy practitioners listed there give details of their areas of practice. You can assess their understanding of cancer when you enquire about treatment.

The Organisation of Chartered Physiotherapists in Private Practice (OCPPP), an occupational group of the CSP for private practitioners, also have a listing service of private practitioners working in the UK: see the OCPPP website ( for further details. You can specify the area of practice required when you do your search. You can assess their understanding of cancer when you enquire about treatment.

Via the independent sector
Occupational health schemes
Some large employers run occupational health schemes for their employees that may include provision for physiotherapy treatment. Check with your human resources or personnel function to see if you may be eligible.

Private medical insurance
Private medical insurance schemes for individuals through the independent healthcare sector will often include physiotherapy treatment. Check with the scheme providers for eligibility and to ask whether they can provide a physiotherapist with an understanding of cancer.

It is also possible to access physiotherapy treatment through less common routes such as charities and the voluntary sector. If you do wish to see a physiotherapist for private treatment, make sure they are chartered.

Get working with a Physio -I found they were tremendously helpful.

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Expert advice before you scratch

Cancer Research UK
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CancerHelp UK

the patient information site of Cancer Research UK, has useful tips on coping with itching.

The following is an extract from some of the information on their website:

  • Limit the number of baths/showers you take – use lukewarm water and very little or no soap
  • Instead of soap, use a moisturising liquid (see Body Skin category for good makes of body cleanser)
  • Pat your skin dry with a towel rather than rubbing- or use a bath robe – but don’t forget to dry your feet!
  • Drying the skin thoroughly reduces the chance of chaffing and fungal infection
  • Moisturise your skin straight after you bathe
  • Wear cotton and linen, rather than wool or man made materials which can irritate the skin (If you must have wool, cashmere is less likely to irritate – of course, it would be the most expensive!)
  • Keep your bedclothes light
  • Try to keep an even, cool temperature in your room, as getting hot can make itching worse
  • Drink plenty of fluids – preferably water (2 to 3 litres a day)
  • Keep your nails short to reduce the risk of scratching your skin

They do say avoid scented lotions, but as Lavender and Rose were used as antiseptics, if you want to smell nice, make sure that any product you use uses the best oils – not harsh chemical scents.

And these are really helpful tips on what to do when you want to scratch:

  • It can sometimes help to gently pinch an area of skin close to the itch
  • Rub, tap or press the area
  • Put a cool pack on the skin
  • Gently apply more moisturiser

If all else fails on a hot night – I used to run a lukewarm bath, put in some good bath milk – the sort that moisturises your skin – and soak until the itching had disappeared.  Then get out, wrap myself in a bath towel or robe until I was dry, and by then usually the itch had disappeared.

I then used a light but good body moisturiser all over, as so often itching was caused by dry, dry skin – so keeping it moist and healthy helped get rid of much of the itching.

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Why NHS treats some diseases better than others

When you can’t eat with mouth ulcers

Cynically – I advise friends to have Diabetes – not cancer.


Last week my GP called me in for a review of my Diabetes (although it is almost impossible to get hold of him for a cancer-related problem).  He spent a long time going through my diabetes history – which was a total waste of time from my point of view, as I am under an excellent Consultant at King’s College Hospital, who had done all the current tests, and managed to reduce my medication – saying that thanks to the exercise I was taking (good side effect of cancer treatment) I may be able to come off this altogether!

WHY THE DIFFERENCE?  Because my doctor gets about 15 times as many QOFs for doing a diabetes review – than he does sorting out my cancer problem.  QOFs are some extra payments surgeries get for handling our cases!

However, I though I had avoided the dreaded Cancer Chemo mouth – until a new drug set this off . Ulcers made it painful to eat, and I searched desperately for something to relieve the pain.

I phoned the Marsden, but they could only recommend I take a mouthwash – which nearly took the roof off my mouth.  The most sensible advice I had came from the nurse team at Cancer Research UK.

Luckily in the meantime however, I had emailed Evolife.  Back zinged an email from them saying they were sending samples of Evomucy for me to try.  This arrived at 9 am the next morning by DHL, and the first time I used this mouthwash I could feel the ulcers closing up.

So read what Cancer Research UK says, but if you want practical help – trust the French!

As they say, “one of the nastiest side effects is an attack on the mucus areas of the mouth.  This often results in painful and unsightly mouth ulcers that make it difficult even to eat or drink (they can say that again!)

Evolife make two products – Evomucy Mouth Wash, which you use as a mouthwash for about 1 – 2 minutes;  and Evomucy spray – which they say is particularly refreshing. This comes in a small spray canister which is easy to carry around in your pocket or handbag, and they advise using this 3 to 6 times a day.

Ask your hospital or nurse if they know about this – I know St. Mary’s Paddington knows about this, and other hospitals are gradually following.  Or contact

The Cancer Research UK Nurse’s reply was:

It would be helpful if you contact your original hospital team, or else your GP to ask them about your mouth ulcer problem. A doctor should have a look in your mouth to confirm the ulcers and check for any signs of infection such as oral thrush.

They can then prescribe medications to help speed up the healing of the mouth ulcers and prevent further episodes. Usually, certain mouthwashes, and if needed antifungal drops or lozenges are prescribed. There are mouth gels and mouthwashes such as Difflam which contain small amounts of local anaesthetic agents that will help reduce the pain and soreness. Painkillers such as paracetamol may also be suggested to help as well.

We have a section on mouth care on our CancerHelp UK website, and the link is here,

If you would prefer to speak to one of the nurses directly, you can telephone us on 0808 800 4040.  We are here from Monday to Friday, 9am-5pm.

But the French attitude was so much more helpful.  I was known to them, so obviously they could send me a product without seeing me first.

To get information from the Marsden I had phoned them at 9 am – and they didn’t call back until 5.30 – and then gave me erroneous advice.

And as we all know, Doctors only get 6 QOFs for looking after cancer survivors, so we are low on their list of priorities – unless we are very lucky.  Mouth ulcers sound very low on priorities, unless you happen to be suffering from them!

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Pedicure Day
Image by Rachel D via Flickr


Fiona Hughes is a very practical Practice Manager at my local GPs.  If you have cracked feet or hands, one of her tips is to get a bottle of baby oil, tip a couple of capfuls out and fill with Lavender Oil (the best quality one).  Shake – then get a bowl of warm water, tip a good splodge into the water, and sit with your feet in this for 20 minutes.  As she says, lavender will heal, is antiseptic and stops infection, the oil will continue the healing, and it smells lovely!

Another of her tips is to eat Manuka Honey (Rowse make a very pure one) – or you can do as they do in New Zealand and spread it on broken skin.  Ask advice first, but it is one of nature’s healers.

FEET ARE SO IMPORTANT – and whilst undergoing treatment, you may find your feet get horrid thick skin, and even what are described as ‘horse nails’ (very thick, calloused nails on your toes).  These come as yet another side effect from drugs.

So you need to have a podiatrist to sort these out – but the NHS tends to have massive waiting lists for them, so you may be better off going privately to somewhere like Shuropody.  They have around 60 salons around the UK, from Aberdeen to Plymouth, so there is bound to be one near by.

Cassie Armstrong from their Coventry branch took me under her wing, and knew all about the problems drugs cause us.  Starting with a lovely foot bath, dead skin was exfoliated off, and we got down to gentle TLC.  Rubbing in special cream, then getting rid of corns that had developed because of the way I was walking after being in bed, she said I should use special cream on my feet after a bath or shower, and before getting in to bed – even better if you wear bed socks to lock in moisture ! She explained that if we get ‘horse nails’, they can even do something about this.

Cassie knows how the NHS works, and is in touch with a nurse treating lymphoedema.  We talked about ‘post code’ lottery, as near where she works there are two PCTs – one providing lymphoedema treatment, the other says patients CAN’T obtain this on the NHS.  If your PCT says the same, look up under Lymphoedema elsewhere in this website, for details of how to sort them out!

If you have cracked, painful skin on your feet, Shuropody have a special Intensive Repair Cream, and gadgets to get rid of ‘build-up’ of skin, corns etc.  The salons offer reflexology too, so you can really have a pampering session, before floating out into the world!  And a lovely tip for summer – blast hot feet with the cold air setting on your hairdryer! 02476-545 545.

Once you have gorgeous feet – keep them that way! After any bath or shower, pat feedt dry and rub in cream. Clinique have a Water Treatment cream which is wonderful and my NHS podiatrist wanted to know what I used! She was also impressed with the lovely citrus-smelling Foot Balm made by Barefoot Botanicals.

But I have found that Flexitol (on NHS prescription) is also very good, and as most people can get this free on prescription in England and Wales, worth asking for. For some reason it is only included on one NHS approval list, but just tell doctors to keep looking: they’ll find it eventually.

Cold feet were a real problem, until Charnos came up with Cotton Modal Tights – modal being a lovely, soft fibre made out of reconstituted cellulose from beech trees (so that’s eco-friendly then!), and 50% more absorbent than cotton.  They have lovely opaque tights in different colours, and – something I would never dare wear ordinarily – ribbed tights.  With swollen ankles etc. I try to keep them hidden, but a friend persuaded me to wear a pair of these, and because they are made of a modal mixture, they aren’t as bulky as wool, but are just as warm.

And if you find it almost painful to walk,or if your feet are cold, or if you just feel like walking on air (and who doesn’t?!) Then I have been trying out Carnation’s Cushion Comfort Insoles (good name).  Not only do they make walking supremely comfortable, but cutting them to size is incredibly easy – you just use a pair of scissors and follow guidelines for each foot size printed on the soles.  If your feet are in a really bad state after chemo, then use the Pressure Relief Insoles – which not only cushion your feet – but have an anti-fungal protection with a lovely smell.

Spa Paradisa (see under Hands) also make a treatment and sell socks to go with this.  Sit on the bed (don’t try to walk in creamed feet!, slather it on, and put the socks on top.  Next morning you should be able to feel a difference.

Pampering – you deserve it

One of life’s lovely treats is to go to Fortnum and Mason and have manicures and pedicures given by Sophy Robson. Beauty Editors go to here when they need ‘special feet’, and now she gives a gorgeous Medi-Pedi treatment for hands and feet. It takes an hour; all dry skin is removed, nails shaped and repaired, Legs and feet exfoliated using a warm sugar scrub then soaked. Then comes a delicious soothing and relaxing massage, and after that the nails are painted.

Sophy doesn’t mind if you bring your own base coat (I took NailTek) but usually uses Sally Hanson products. I am typing this up after one of her treatments, and three days later there isn’t a chip to be seen; I keep on having to stop and admire my nails. You can book her on the new health and wellness website

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