Monthly Archives: April 2011

Test all women should have

Clinical Ovarian Cancer

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GPs should offer every woman a simple blood test


NHS advisers want to see greater use of a blood test that measures a key protein, to improve early diagnosis of Ovarian Cancer.

Our local LINk – contrary to what La La Lansley says – is very active.  At our last meeting we had a very helpful talk from a rep. from Ovarian Cancer charity, and she stressed that we should ask our GP for a test for CA125.

The test costs about £20 to the NHS, so there shouldn’t be any problem in funding this.

I was due to see the vampires for routine blood tests, so asked my GP to add this one to the list – only to find that in my practice this is done regularly for all women patients who might be at risk.

How to identify Ovarian Cancer

Often called ‘The Silent Killer’, almost 7,000 UK women a year are diagnosed with the disease, but only about a third are still alive five years on.

Key symptoms are bloating, lower abdominal pain, feeling full after eating only a small amount, and needing to urinate with increased frequency.

A member of the guideline group, Sean Duffy, from the Yorkshire Cancer Network, said: “The symptoms can be vague, but shouldn’t be ignored if they are persistent.  By persistent, we mean them occurring more than 12 times a month”.

The blood test detects cancer only about half of the time – but experts believe using it more often, as well as ultrasound scans where necessary, and encouraging women to be more aware of the symptoms, will improve the UK’s “disappointing” survival rate for ovarian cancer.

A consultant gynaecological oncologist, Mr Charles Redman, said: “This strategy won’t be the perfect answer, but we think it will make a measurable difference. …..  But the current situation is very poor. Other countries do better than us.”

One Ovarian cancer patient, Mrs Facey, from Gosport in Hampshire, said: “My waistline was persistently bigger – even within a week.  I thought it was just changes to my body as I got older.

Sometimes doctors tell women they have Irritable Bowel Syndrome (IBS) – but NICE has already produced guidelines to say this is unusual as a new diagnosis in women over 50.”

Ovarian Cancer Action says:

The three key symptoms are:

  1. Persistent pelvic and abdominal pain
  2. Increased abdominal size / persistent bloating – not bloating that comes and goes
  3. Difficulty eating and feeling full quickly

Other symptoms such as urinary symptoms, changes in bowel habit, extreme fatigue or back pain may also be experienced on their own, or at the same time as those listed above.

In most cases it is unlikely that these symptoms are ovarian cancer, but they may be present in some women with the disease.

But if you feel bloated, or have any other of the symptoms underlined above, it makes sense to get  the CA125 test done.  If only to put your mind at rest.



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London cancer hospitals get 'Red Card'

Liam Trotter Gets the Red Card

Liam Trotter gets Red Card Flickr

Eight of the ten NHS Trusts that came bottom of a hospital league table are from London – so they have been given a ‘Red Card’.

The table measured patient experience across England, in the latest Patient Experience Survey

It does not cover the medical treatments patients received, such as standards of chemotherapy or surgery.  But if patients are worried about their care, they aren’t going to be in the right frame of mind to take advantage of treatment.

The league measures patients’ experiences while being treated at hospital, for example:

  • if there were enough nurses on duty
  • whether they were given enough support from health and social services when they left hospital
  • whether they were given the right emotional support or told about financial information.

Ciarán Devane, Chief Executive of Macmillan Cancer Support says:

‘Cancer patients are being let down by many Trusts that are failing to give adequate levels of care.

The experiences you have whilst in hospital can have a massive impact on your health and wellbeing, and how well you cope once you leave hospital.

We hope that the Trusts given a ‘red card’ will work with community services and take urgent action to improve the care they offer cancer patients.’

According to the research, breast cancer patients in England have the best patient experience, while sarcoma patients have the poorest.

Trusts in the bottom 10 (from worst to best):

1) Imperial College Healthcare NHS Trust

2=) Royal Free Hampstead NHS Trust, 2=) The Whittington Hospital NHS Trust

4) Barts and the London NHS Trust

5=) Royal National Orthopaedic Hospital NHS Trust, 5=) The Princess Alexandra Hospital NHS Trust

7) Newham University Hospital NHS Trust

8) Croydon Healthcare NHS Trust (formerly Mayday)

9) Ealing Hospital NHS Trust

10) Portsmouth Hospitals NHS Trust.

What do you do if ‘caught’ in one of these hospitals?

Macmillan is calling for the Government to put more focus on improving cancer patient experiences and to provide urgent support to the Trusts with the worst results in its league.  However, as a petition elsewhere on this website says,  Breast Care Nurses are being moved to other departments – so first thing is to sign

Through over 5,000 Macmillan professionals and over 100 information centres in the UK, Macmillan has a presence at all of the hospitals that came bottom in the league and will be working with them to improve patient experience.

So get in touch with the Macmillan Nurses – ASK what you can do to help.  Often it can be just writing or even phoning a Department to ask them not to close down a service.

If we don’t do anything – why should hospitals think they need to ?

Eight out of the top 10 Trusts, including Harrogate and District NHS Foundation Trust, and Barnsley Hospital NHS Foundation Trust are in the North of England.

According to the Dept. Health, there are 12 Trusts which never appear in the bottom 20% of Trusts on any question in the survey, as follows:

•        Airedale
•        Barnsley
•        East Cheshire
•        East Sussex
•        Gateshead
•        Harrogate
•        Northumbria
•        Poole
•        Royal Devon and Exeter
•        Sheffield
•        South Tees

You can view the full report for each of the trusts by scrolling down to the relevant trust on this link:

And well done to them!

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Ode to Grandparents

HM Queen Elizabeth II, Queen of the United Kin...

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Well done – you are a marvellous lot!


And as so many of you are now in the age-bracket where cancer is more likely to strike, here are some thoughts about what you mean to your grand-children.

So you can realise that even if you have been hit by a cancer-whammy – you are appreciated.

And this weekend the most famous Grandmother in the world is looking forward to her Grandson, Prince William’s wedding to Catherine Middleton.

Not bad looking for 85!



Children’s comments voiced recently:

Grandparents are a lady and a man who have no little children of their own. They like other people’s.

Grandparents don’t have to do anything except be there when we come to see them. They are so old they shouldn’t play hard or run. It is good if they drive us to the shops and give us money.

When they take us for walks, they slow down past things like pretty leaves and caterpillars.

They show us and talk to us about the colors of the flowers and also why we shouldn’t step on ‘cracks.’

They don’t say, ‘Hurry up.’

Usually grandmothers are fat but not too fat to tie your shoes.

They wear glasses and funny underwear.

They can take their teeth and gums out.

Grandparents don’t have to be smart.

They have to answer questions like ‘Why isn’t God married?’ and ‘How come dogs chase cats?’

When they read to us, they don’t skip. They don’t mind if we ask for the same story over again.

Everybody should try to have a grandmother, especially if you don’t have television because they are the only grownups who like to spend time with us..

They know we should have snack time before bed time, and they say prayers with us and kiss us even when we’ve acted bad.



Send this to other grandparents, almost grandparents, or heck, send it to everyone. It will make their day.


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Are you daft as a brush? Join a charity helping cancer patients

Launched with a memorable name,                                                                this charity provides sensible help


Cancer patients often have problems getting to hospital for treatment.

If they qualify for patient transport, the buses can pick up early in the

morning, leaving the patient waiting hours once at the hospital.  Then there is the problem of return transport …..

So most patients struggle in by themselves, or if they can’t drive, manage to persuade neighbours to run them in – but there is a limit to the amount of good-will one can ask of friends.

Now, Daft as a Brush charity has been launched, to take patients in comfort, off to hospital in the vehicles you see here.


Does this work?

In the States, there is often a neighbourhood group that will arrange for you to be taken to hospital – and now we have Daft as a Brush for lucky patients in and around Newcaste-upon-Tyne.   Needless to say the vehicles were bought from Nissan, whose factory is just up the road.

Eventually founder Brian Burnie wants to be able to carry 50,000 cancer patients a year – but he is going to need a lot of volunteers, because every vehicle will have a Chauffeur (Brian says they look after people, like the old-fashioned chauffeur, rather than just driving) and a Companion.  This Companion will be able to go with the patient into the hospital, deliver them to right place, and stay with them during treatment if needed.

And no worries about paying daylight-robbery car parking charges!

How it started

Brian used to own Doxford Hall Hotel – and one day he sold it for £9 million, and used the money to found his charity.

Now the charity says, “we are delighted to announce that Daft as a Brush Cancer Patient Care is GO ! Our first two vehicles are on the road…..

As from 4th March 2011 they were in business;  their first 2 vehicles, “Starlight” and “Sparkle” are now on the road.

Their first passenger, Eddie Carson,  wasn’t able to drive due to his treatment, so used the service during his radiotherapy treatment at the Freeman Hospital.

The vehicles will also be available for anyone undergoing Chemotherapy treatment

Now, Daft as a Brush need your help !

Lots of volunteer positions are available, and anyone interested should call 0191 23 28 999 for more details.

The regions to be covered by Daft as a Brush are: Northumberland, North Tyneside and Newcastle upon Tyne.

There would be no charge to the patients for our Service. The service would entail collecting and transporting the patients in a safe and comfortable environment, from where they are living, taking them to where they will be having their treatment. If required staying with the patient whilst they have their treatment and then bringing them back home in readiness for their next course of treatment.

So, if you would like to be involved with Daft as a Brush,

please call into the  office at 3-5 Hood Street, Newcastle upon Tyne

or call 0191 23 28 999.


Registered Charity Number: 328 432 Company Number: 233 3474

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Yes – another petition

Andrew Lansley, British politician and Shadow ...

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Keep our Breast Care Nurses!

‘They’ are going to sack Breast Care Nurses, unless we do something about this.


Remember Andrew Lansley saying he wanted to get rid of the massive amount of Administrators that were over-burdening the NHS?

That was in the early days of his health bill, before we realised he was all talk and no substance.

He sounded good – we all knew there were far too many admin. staff in the NHS, demanding nurses fill out interminable forms, but totally useless.  Only a few realised Administrators were going to have to sack themselves, and that would never happen.

What did happen is Administrators found a clever way out of their dilemma:  say that senior nurses, as they are in charge of a team of other nurses, are Administrators.  So in our area alone 126 senior CSNs, OTs, Breast Care Nurses, etc. face the sack.

You can help save these senior Nurses!

Sign Breast Cancer Care’s petition.

Please go to

Sign – then pass on this link to family and friends and if you use social media, post it on you Facebook and Twitter pages.

And another thing:

Countdown to the elections

Welsh Assembly and Scottish Parliament Elections are in May.  Breast Cancer Care want you to tell them what you want the new Assembly/Parliament to do for people with breast cancer.

They are looking for people who live in Wales and Scotland to send a photo and a short sentence telling them your  priority for the Assembly/Parliament. “We want to build up a page on our website that tells politicians in Wales and Scotland about the different needs and experiences of people affected by breast cancer in these areas”.

“We will circulate a link to the website to candidates standing for election so they can see for themselves some of the things that need to be done. Help us to tell them that breast cancer should be a priority!”

To take part, send a photo of yourself to Tamsin James in their Policy and Campaigns team

and complete the sentence:

‘I would like the next Assembly Government to…’


‘I would like the next Scottish Parliament to…’

They will add your sentences to their website, and ask you to pass this on to any friends or family in Wales and Scotland who you think might be interested in taking part.

Trust me!  Using the Internet in this way is starting to have a big effect on the way politicians think.

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Diabetes drug could help cancer patients

Diabetes UK's Logo - The Hummingbird

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Study at Oxford University aims to find if there is a link


It only costs 10p a tablet, but a tiny white pill might have the potential to prevent cancer in patients with type 2 diabetes.

Research, by scientists at the University of Oxford and funded by the charity Diabetes UK, aims to determine if there is a connection between taking metformin and a reduction in the risk of cancer for those with type 2 diabetes .

Lead researcher, Richard Stevens, said “The complications of diabetes are commonly thought of in terms of the heart, eyes, nerves and kidneys . However some people with diabetes could also be at higher risk of developing cancer than those without the condition.”

Iain Frame, director of research at Diabetes UK, also commented “While there are various approaches to minimise the effects diabetes can have on specific organs, little is known about what preventative measures can reduce the risk people with diabetes face of developing some forms of cancer.”

He added “If it is found that metformin can help to reduce the risk people with Type 2 diabetes have of developing cancer, then this will be a big step forward in terms of how we can help people manage the condition, and hopefully allow us to develop a means to tackle the increased risk for all people with diabetes.”

But it’s not all coming up roses

I had been taking Metformin for several years before I developed breast cancer, but would love to think that this study might help others.

We will just have to be unscientific and cross our fingers!

More info:


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Cancer patients needn't feel guilty

pink ribbon

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Politicians put patients with cancer first – because ….

We get off our Bxxxxxs and ASK

I used to feel guilty about this – here was I – a cancer patient – and if I went to the doctor and said “I think I have cancer”, officially I was to be fast-tracked through and get tests within two weeks.

Those with other problems, from hips to heart, joined the lengthy NHS queue, even though their need was just as great.

When I needed expensive drugs – one little murmur from my GP re prescribing these, cost etc., and it was on to the PCT who caved in immediately to give me the drugs.

The Telegraph’s resident doctor, Max Pemberton‘s latest article addresses this problem.  What he writes is  interesting to read; on appalling treatment for OAPs, how we treat dementia patients, etc.  he is always spot on.

His latest article on treating cancer patients asks “what about other illnesses?”

He is right

But before we feel guilty that we are getting what we ask for, just remember;

it was our parents and us who fought for better cancer treatment.  When my mother had breast cancer 40 years ago all her friends spoke about her condition in whispers. Mother defied them, told anyone who was interested that she had  cancer, and her generation bought this problem out of the closet.  Today, we are used to talking about cancer, and I meet up with other survivors who have no hesitation in saying what type of cancer they have.

But I also had polio as a child, and picked up problems such as osteoporosis from side effects of drugs along the way. Now I find the attitude towards tackling problems caused by these conditions, especially in the NHS, is totally different, and I have to fight for what I need on my own.

The Westminster Fly-in is a highlight of the year for many of us on the campaign trail, and 0rganised (extremely efficiently) by Breakthrough Breast Cancer.  At the event we get to meet up with fellow breast cancer patients, which always produces some thoughtful approach to problems that might just work for me ……

On the day, Breakthrough Breast Cancer gets a large group of MPs through the door to be lobbied, talked to and sent away clued up with knowledge to fight on our behalf.

Now contrast this with Polio.  The NHS gingerly comes up with the figure that there are ‘probably’ 120,000 of us in Britain:  not enough to get their iron knickers in a twist over our treatment.

But if we lived in the States doctors WOULD know about it.  Campaigners have found that there are 3 million polio survivors in the States;  we had the same incidence of polio in our population, so taking their figures as an example, we probably have at least 600,000 polio survivors in Britain.  Many of us have a condition that presents itself when we are over 50 called Post Polio Syndrome, repeating the problems we had as children, with added twists – but only a few stalwarts are there to lobby on our behalf.

If people such as Lord Snowden, and other survivors, got up and made a fuss – we would soon have more recognition.  But trawling through a Wikipedia list of polio survivors, very very few, apart from Mia Farrow,  ever campaign on behalf of survivors.  Yet, Google: ‘Breast Cancer celebs’ – and the picture is very different;  every survivor now wants to be associated with campaigning about this disease.

The same with Osteoporosis – there are thousands of us in Britain; cancer patients  who were put on aromatase inhibitors, told we might get the disease, and when we did were just told to go home and exercise.  In Europe patients don’t stand for that – they have demanded proper exercise programmes, and since I have been following a similar programme I have reversed my Osteoporosis by 21%.

This little victory is of no interest whatsoever to my local hospital, who don’t want to help me as I would be using NHS resources (which at the moment are lying idle in the hospital gym).  The equipment was provided (as little plaques tell us on every piece of eqipment) by the Friends of the hospital (Mother was one of their fund-raisers).  When I contact the Chairman of the Friends, to say why isn’t this equipment available for people who might want to use it, she weakly talks about “hospital policy”.

Luckily my MP, Greg Hands, is a really good constituency MP, and tirelessly contacts officials on my behalf.

But, the shining example of good NHS care comes if you have a heart problem.  Bad news is ASCO conference in U.S. last year came out with around one in four of us will have heart problems if we take aromatase inhibitors;  good news is, if you have to go into the Brompton Hospital for treatment, you are amazed at how well the NHS can perform – when it wants to.  Cancer hospitals could learn so much from this hospital, particularly with their fantastic drugs telephone helpline.

And we only have to look at how Help for Heroes has bought amputees out of the homes in which they would once have retired.  Their lobbying is incredibly effective, and nearly £100 million pounds worth of funds raised are producing an awful lot of practical help.  It is always energising to join in with any H4H event;  they are focussed;  everyone is given something to do, and everyone gets on with it.  When I have been involved in a H4H, event planning is done by email, and we don’t take no for an answer – just think of ways around the problem that will please everyone.

Other charities could learn a lot from lobbying and  events in aid of cancer, H4H and Heart.  We, as cancer patients don’t need to feel embarrassed;  we got on with lobbying, planning, writing and begging – just don’t feel upset because others sit down and don’t get on with fighting for better NHS care.

As Max Pemberton says, “I don’t want to deny someone who has cancer even the slimmest glimmer of hope. But conversely, just because the diagnosis of cancer is so emotive, I don’t want to see treatments that have proven benefit being denied to people with other conditions. I can’t help but think that if people knew the reality of the Cancer Drugs Fund, it wouldn’t be such a vote winner”.

He’s right there – but if no-one else fights like we  do – we can’t blame ourselves if we get more than our fair share.

Get Involved

Contact Breakthrough Breast Cancer about being involved in the Westminster Fly-In.  It doesn’t matter where you live, they raise money so that anyone in UK can come and lobby their MP.    Once you sign up, they send you frequent updates to give you help in how to lobby your MP, what to write, and how else you can help.

Next Event: Monday 17th and Tues. 18th October, 2011

Not only is the event great fun, because you meet others who get on with things! – but you learn an enormous amount about how to put carry out effective lobbying.

Contact or 020 7025 2584

See you there!

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Little bottle that zaps itchy skin

Sasy n Savy is new kid on the block

I have been trying out a new body lotion just arrived from Australia, and suddenly realise I have stopped itching.

Called Silk Shimmer Body Lotion, I have been using it every morning after my bath.

Itches and rough patches are something we all put up with;  just remember to cream our skins twice a day instead of once when they break out.  But this natural skincare from Australia has made a big difference – I don’t keep on scratching when it’s getting late and some time away from the daily skincare routine.  Usually when we have very cold winds, I can be itching like mad – but horrid weather we had during March/April hasn’t bothered me this time


Reason I am not a big fan of companies that trumpet they are only made from ‘natural’ ingredients.  There are some pretty hairy natural products out there – and conversely not all chemicals are bad – and even if we add to the chemicals in our bodies, nothing the skincare boys could include in their pretty bottles would come near the lethal cocktails the medics shove into our bodies.

But ….. if a product contains lovely-sounding ingredients such as extracts from Kakadu plums, Bearberry leaf , Wild rosella flowers, Grass Lillies and lots of Australian essential oil – I’ll give it a try!

And this past month I have smoothed on the pink lotion, albeit a bit reluctantly because it disappeared immediately into my skin – but after a day or two I suddenly realised ‘no itches!’ – they’d stopped.

For a small bottle, it packs a massive punch well above its weight – and as I travel a lot this will make packing easier.  But I won’t be taking it because of that – but because itches have disappeared.

Cost:  £28   buy from Harrods or

And don’t forget, Australia as a country has some pretty impressive cancer care – they are in the forefront of much of the research, and practical products being produced.






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'dip-in' book of humour for cancer patients

What on earth is a ‘dip-in’ book?

When I came home from my cancer op, all I wanted to do was laze around.  The newspapers were too ‘in-depth’ for me – TV needed thought, radio got on my nerves.

The only thing that kept me sane was a little book with photos of dogs doing funny things.   I could ‘dip-in’ to half a dozen pages, then go back to semi-somnolence.  I didn’t need to use any brain-power, but each picture or page bought up a little smile, and sometimes I laughed out loud.

I also found the wonderful Indian doctor (and cartoonist) or should I say cartoonist (and doctor) Dr. Hemant Morparia – whose humour made me laugh about things that happened in hospital – which anyone else would think was weird (but maybe I am!)

So when  a friend (and fellow patient) kept on sending me lovely pieces for the Humour section, I asked if she minded if we kept them and made up a ‘dip-in’ book to sell in aid of Paul’s Cancer Support Centre.  I am now a Trustee, and we are oldest support centre in Britain.

My friend is really keen and faxed me over some fabulous stories, which have kept me in stitches.  Not all of them medical, but what does that matter!  Here is a taste, and if anyone knows of a sponsor who would help us get this book going, please send an email to


These came from notices outside churches etc.  We have similar ones relating to dogs, shoes, fashion, cricket, football, etc.

The Fasting & Prayer Conference includes meals.

The sermon this morning: ‘Jesus Walks on the Water.’ The sermon tonight: ‘Searching for Jesus.’

Ladies, don’t forget the rummage sale. It’s a chance to get rid of those things not worth keeping around the house. Bring your husbands.

Don’t let worry kill you off – let the Church help.


Miss Charlene Mason sang ‘I will not pass this way again,’ giving obvious pleasure to the congregation…

For those of you who have children and don’t know it, we have a nursery downstairs.

Next Thursday there will be tryouts for the choir. They need all the help they can get.

Irving Benson and Jessie Carter were married on October 24 in the church. So ends a friendship that began in their school days.

At the evening service tonight, the sermon topic will be ‘What Is Hell?’ Come early and listen to our choir practice

Eight new choir robes are currently needed due to the addition of several new members and to the deterioration of some older ones.

Scouts are saving aluminium cans, bottles and other items to be recycled. Proceeds will be used to cripple children.

Please place your donation in the envelope along with the deceased person you want remembered.

The church will host an evening of fine dining, super entertainment and gracious hostility.

Potluck supper Sunday at 5:00 PM – prayer and medication to follow.

The ladies of the Church have cast off clothing of every kind. They may be seen in the basement on Friday afternoon.

This evening at 7 PM there will be a hymn singing in the park across from the Church. Bring a blanket and come prepared to sin.

Ladies Bible Study will be held Thursday morning at 10 AM. All ladies are invited to lunch in the Fellowship Hall after the B. S. is done.

The pastor would appreciate it if the ladies of the Congregation would lend him their electric girdles for the pancake breakfast next Sunday.

Low Self Esteem Support Group will meet Thursday at 7 PM. Please use the back door.

The eighth-graders will be presenting Shakespeare’s Hamlet in the Church basement Friday at 7 PM.. The congregation is invited to attend this tragedy.

Weight Watchers will meet at 7 PM at the First Presbyterian Church. Please use large double door at the side entrance.

The Associate Minister unveiled the church’s new campaign slogan last Sunday: “I Upped My Pledge – Up Yours”

end – and if anyone knows a printer with a philanthropic turn of mind, or a company that would like to sponsor such a book – please contact

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Organ music concert in aid of Cancer Support Group, Nottingham

It is organ manual
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The Brett Wales Annual Organ Concert 

will be held on 

Friday 12th August 2011

Doors open 7pm

At The Mapperley Plains Social Club (formally Gedling Miners Welfare)
Plains Road, Mapperley,  Nottm. NG3  5RF.
Bar and Food available

Raffle in aid of Nottingham Cancer Patients Support Group.

Tickets £5 each on the door or from Katrina on 0115 927 4925.

This is always a wonderful evening of music to suit lovers of ALL kinds of music.
So come along for a sparkling evening
Freda Ingall, Leader of Nottingham Cancer Patients & Carers Support Group

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