Monthly Archives: March 2010

What if you need Hospice care?

Frosty Campsie Fells
Campsie Hills  Andy_Mitchell_UK via Flickr

MARIE CURIE SUPPLIES THE VIEWS – AND TLC

It was Hippocrates who is credited with saying that patients should be treated on the top of a hill, so that they could look around them and see beautiful views.

The people who planned the Marie Curie Hospice, overlooking Campsie Hills in Glasgow, have taken this to heart, and from every room you look over fantastic views stretching towards the hills that surround the city.

When one patient was offered a TV, he said why would he need one, when he had such wonderful view from his window?

The old hospice at Hunters Hill had catered for over a thousand patients a year.  It was opened in 1976, and was showing its age.  So Marie Curie decided a new hospice was needed, and set about raising over £16 million via The Big Build.  So successful has every fundraising event  been, from Line Dancing through to cycle events, and running to the Rotary Club, that there is only £950,000 left to raise!

Of course one blithely says ‘only’, and it is Fund Raising Manager Karen Milne’s job to raise the rest of the money, so if you want to help her ‘finish it off’, click the link below to donate.

As I was shown around by Karen, it was obvious that those who work here are very proud of the way the building has been designed.  Most of the rooms are singles with en-suite bathrooms, and every one has a door leading out onto a         balcony or terrace overlooking those fantastic views.They celebrate birthdays

The Hospice not only offers the in-care facilities for which Marie-Curie are famous, but it also has a thriving day care programme.  This offers  all kinds of therapies, from Acupressure, Massage, Reflexology, Shiatsu, etc.  And everywhere I went there were cosy corners where families and friends could sit with patients and make a cup of tea.  When I went to wash up my cup Karen told me someone would be along to do that!

Glaswegians are very proud of the work that Marie Curie does in the City.  The Connelly family has been heavily involved with the new hospice, and as their daughter, Maggie Glassford says, This is a place for people in real need; it’s a reassuring safety net.  Without the services the hospice provides it would be devastating for patients and their families”.

For anyone needing the hospice services, the impression that the cheerful and efficient Reception staff gave was extremely welcoming, and as a dog lover it was cheering to hear that pets are welcome guests, provided arrangements are made beforehand.

www.bigbuild.org.uk

www.mariecurie.org.uk

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U.S. Immigration procedures causing trouble for cancer survivors

MANCHESTER, ENGLAND - NOVEMBER 16:  Home Offic...
Image by Getty Images via Daylife

WATCH OUT  WHEN TRAVELLING TO STATES

If travelling to countries where fingerprint identification is required, particularly the States, and you are on CAPECITABINE (Xeloda), take a letter with you from your Oncologist confirming this.

Similarly,the same if you have a prosthesis (see below).

Roche the makers of Xeloda, say Hand-foot syndrome (HFS) is a known side-effect of a number of cancer treatments, including Xeloda (capecitabine).  It can cause redness, tenderness, and possibly peeling of the palms and soles.

Recently a traveller to the US was held at Immigration for some time, as his fingerprints could not be identified, due to his treatment.  The US Immigration have caused numerous problems to legitimate travellers in the past – so carry a letter with you to show to officials.

Roche says “HFS is manageable, and can be minimised with good patient management”.  Further details on the label, or  contact Roche.

Prosthesis

America’s Transportation Security Administration is not noted for customer care, and recently must have issued an order to its stony-faced staff at airports.  All of a sudden, the US press is full of stories about cancer patients being made to remove breast prosthesis at security checks.  See  http://healthspanews.com/us-immigration-has-only-itself-to-blame-for-adverse-stories/

When I politely check with their press office to see if these stories are true, back comes the usual ‘customer friendly’ response – ‘you can check regulations on TSA website’.

Has no-one told them if you get the public on your side, they are likely to identify terrorists that you might overlook.  I know this is true – one Customs official used to joke every time I went past him  One day I stopped for a chat and mentioned, “hope you don’t think I am stupid, but I saw that man doing something fishy”.  And yes, it was a very nasty character;   shivers run down my spine when I think I would have been too worried about wasting their time,  if I had been checked by a charmless official that day.


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NHS would gain if bureaucrats are sacked

NHS logo
Image via Wikipedia

Smug feelings reign supreme!

Ooooh – don’t you love that  smug feeling you get when someone in authority speaks from the same crib sheet as you!

This week The Sunday Times quotes Edward Leigh as saying “my solution for the NHS is to return it to the consultants and let them get on with it.  There is a massive gain in cutting the number of bureaucrats.  A lot of them would go and the public would not notice the difference”.

So who is Leigh?  He is the outgoing chairman of the public accounts committee – a man whose job has been  to oversea public spending – and he has just launched a blistering attack on NHS beaureacracy.  Good for him.

His committee has uncovered staggering amounts being wasted in the NHS, such as over £100 million on a national chlamydia screening programme, which The Sunday Times says could not produce evidence that it worked.

His final report makes staggering reading.  Next time you call in an electrician and complain about the quote, think of the NHS, blithely allowing their electricians to charge over £300 just for changing an electric socket.

In a blistering attack (good for him) he says “there is not a shadow of a doubt that you can deliver the reduction (in public finances) …by imposing massive efficiency savings and job cuts on the bureaucracy”.

So why not ‘divorce’ the NHS from politics and let Edward Leigh take over?  Don’t offer him a salary, just tell him he gets 0.001 % of the savings he makes.  And bet you he will be in clover.

To see the full text of his findings, go to www.timesonline.co.uk/politics

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Statistics on how many experience side effects from hormonal drugs

You are not alone

All the time you are asking for help with dealing with side effects, it can seem that medical staff are not interested – you are making a fuss, but they try to tell you no-one else does.

So before you imagine you are the only one having problems, you might like to know that recent findings from reputable surveys into problems of cancer drug side effects say:

  1. 95% will experience problems
  2. 50% come off drugs because of side effects
  3. and the average patient spends £2,000+ – £12,000 on post-cancer treatment, services, etc. (Macmillan survey).

So you are not alone, but it can be difficult and lonely trying to find help.

Using the Internet

A laptop on my lap top
Image by Nealy-J via Flickr

UCanDoIT – learning to use the Internet for help

Breast Cancer Care is currently running a survey on its website, asking where browsers look for information.

One would expect a high percentage to say “off the web”, but even so the results are shaming – for the medical profession – and prove that often they DON’T talk to us.

The survey asked where patients get their information from:

  1. 11% get their information from Professionals (doctors, nurses etc)
  2. 13% from Publications
  3. 74% off the Web

Even though an Internet-based survey will obviously have a bigger “web” input, this seems a sad comment on the help we get from medical professionals.

The Dept. Health is relying more and more on the Internet;  the latest proposals to close wards down assumes that patients are going to email doctors to ask for information so they can be treated at home.  This is a recipe for disaster, but used sensibly, the Internet can be very helpful.

If anyone wants help in becoming more Internet-savvy, there is a very helpful charity called UCanDoIT which is worth contacting.  Their remit is to teach disabled, elderly and housebound people how to use IT, and they come to your home to do this.  Cancer patients come under’ disabled’, and lessons are free.

One cancer patients says, “recently I have had Jim come to my home once a week for about 90 minutes at a time.  Having one-to-one sessions meant I worked at my own pace, and surprised myself with what I learnt.  Each week I made a list of things that bothered me, didn’t work, or I wanted to learn;   Jim would go through the list, and we just zipped through it.  Result was at the end of each session I felt really confident that I had mastered more of this weird new world – and thanks to Jim I even felt confident enough this week to offer to help set up the local LINk blog”.                  www.ucandoit.org.uk

Another useful company is The Tech Guys, who can reduce Geek speak to plain English.  This company is at the end of an 0800 phone number, and operates an incredibly helpful helpline for home computer users.  Based in England, they answer the telephone within a few rings, and give information in understandable form on just about any problem I have ever come across on my lap top.

The most incredible feature they offer is Remote Control.  You log in to their website, click on a button, and the technician at the end of the phone can see you screen.  You sit and watch as they move the cursor around the screen, clicking on things and repairing whatever was the fault.

Costing £80-£90 a year for the service, this price even included sending a courier to collect my lap top when I spilt water on the keyboard, replacing the keyboard, and delivering it to my home a few days later – at no extra charge.  And the people you talk to seem genuinely nice.    www.thetechguys.com

Sporting record falls to a cancer survivor

Army Staff Sgt. Harry Alexie of the Alaska Arm...
Lance Mackey  Wikipedia

Dog sledder Penny Evans reports on

‘A record falls overnight …

whilst pink bootees push double mastectomy musher over finish line…’

Last night, 16th March 2010, in one of the smallest cities in the world and half way round the planet from the UK, Lance Mackey quietly emerged off the sea ice of the Bering Straits and entered the history books.

His arrival in Main Street Nome was greeted with thunderous applause from the spectators and his adoring fans.  Their darling driver with his team of sled dogs had won the 1,000 mile Iditarod Race from Anchorage for the record-breaking fourth consecutive time, in a total of 8 days, 23 hours and 58 minutes.

30 year old Lance Mackey comes from a famous family of “mushers” …. his father Dick Mackey was a founder of the Iditarod Sled Dog Race, known as one of the Greatest Races on Earth, and actually won the race in 1978 by one second over Rick Swenson.

Lance’s half-brother, another  Rick, won in 1983.  Incredibly, all three ran under the Bib number 13 and won on their sixth attempt.  In 2010 Lance once again proved his ability to not only manage and drive his team through some of the toughest of terrain, but also that strategy plays a huge part in this test of human and canine strength.  His fans may adore him and though popular with his fellow competitors, so many times Lance has outwitted them on the trails.   Lance’s wife Tonya is also a musher, and with their four children run their Comeback Kennel in Fairbanks, Alaska.

Long distance sled dog racing is not, however, the only adversity that Lance Mackey has faced in his life.  Diagnosed with throat cancer in 2001 he refused to give in and continued his sled dog racing, even entering the 2002 Iditarod race. Although now considered cancer-free he still needs constant supplies of water for his throat – not an easy feat out on the trail in minus 60 temperatures.  Also, after nerve damage caused by an operation to remove a cancerous tumour, he chose to have the finger surgically removed rather than continue in unbearable pain.

But that’s the facts …. what about the man ?  I met him in that same street in Nome Alaska in 2008.  Lance had already won both the Yukon Quest and the Iditarod in that year and had just finished 3rd in the the 408 mile race from Nome to Candle and back to commemorate the centenary of the All Alaska Sweepstakes Race – the first sled dog race in the world. It was four o’clock in the morning, minus 30 degrees but this meeting is a memory I shall never forget, such is his charisma.

So what makes him the darling of the sled dog world ? This unassuming man is the most generous person you can imagine – the David Beckham of the Sled Dog Racers – a gentleman and a wonderful ambassador of the sport.  At the finish line when you would imagine a bath and a bed were the only things on his mind, he stopped and talked to everyone.  We were lucky enough to be introduced to him as “his No.1 Fans from Europe” … at that time not a great accomplishment as we were the ONLY Europeans who had travelled to watch the race.  He happily chatted about our dogs – we also own sled dogs and race and show them in the UK – had his photograph taken with us and even gave us one of his dog boots.  Okay, okay, perhaps a sweaty dog boot that has covered 408 miles is not perhaps what everyone would want, but one of Lance’s .. well that’s different, trust me !

Books could be written on the accomplishments of Lance Mackey and there is not enough room in this article to list his achievements both with his dogs and in his personal life, but I think it best to leave it to Lance for the final quote.  On the finish line yesterday in Nome, he said “I like the number five as much as I  like revelling in being the first in Iditarod history to win four in a row” …    So watch out for next year …

Later, double mastectomy breast cancer survivor, Dee Dee Jonrowe, has arrived at the finish, “tired, but her dogs are fine”.  This of course was comment from another friend – a musher of course!

Dee Dee has come in 22nd – out of a field of 71 starters, now whittled down to 56 and dropping. So 2/3rds of her rivals haven’t even reached the last but one check-point.

Dee Dee had 2,000 pairs of pink bootees made for her team of dogs;  she is a breast cancer survivor, and this was her way of celebrating and raising funds.

The team wearing their pink boots

And the dogs will now be trying to bite off those pink bootees.  Not because they are macho and don’t like the colour, but sled dogs just don’t like boots – full stop.  Made of Teflon or other almost indestructible materials, the moment mushers put them on, the dogs  are biting away trying to tear them off.  But they are necessary, because trails such as the Iditarod soon ice up, meaning there are sharp ice crystals all along the way, that tear dogs’ paws.  And even made of the material they are, they don’t last more than a stage at a time – hence the need for 2,000 for Dee Dee’s 16-dog team.

The first Briton – sorry Scot, to make it home,  at 45th, was rookie Wattie McDonald, born and raised in Scotland.  “I began with our first Siberian husky in 1999 and quickly became addicted to sled dog racing. After dreaming of Iditarod for many years, Wendy and I decided t o celebrate 25 years of wedded bliss by watching the start of the 2008 Iditarod, and from that day, Iditarod became a ‘must’ for me”.

He trains in Fetteresso Forest,  and is a member of the Scottish Siberian Club, and was racing to support CLIC Sargent.  A Rookie is a first-time Iditarod racer, and surprisingly Wattie arrived home with all of his 16 dogs.  Most racers will have ‘dropped’ dogs along the way (they are extremely well looked after, fear not) either for health reasons, or because the dogs get too tired.  But Wattie has carefully nursed his team right until the finish – the only one to arrive with all of his at the finish this year. Some mushers were down to 8 dogs – perilously close to the cut off, as the race rules say you have to have a minimum of 6 dogs at the end, or you are disqualified.

We don’t know yet if Wattie crossed the finish line in his trade-mark Kilt – with temperatures well under freezing (minus 40 most of the nights) one thinks not!  If you want to donate to CLIC Sargent click on to www.wattiesgreatrace.com.

Lance’s website: http://www.mackeyscomebackkennel.com

Race reports:  http://after-cancer.com/cancer-news-latest/iditarod-toughest-race-on-earth/

Iditarod official site:   www.iditarod.com

UK Siberian Husky Club (they also have details of races in Britain) :  www.siberianhuskyclub.com

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Ways to save NHS money

The biggest change I would make if I could would be the scrapping of “the internal market”.

A report from an anonymous mole says :

This you may or may not have heard of, but basically this means that each NHS trust is competing financially against every other trust.

Also it means that each trust bills other trusts for the work it undertakes for them. For example an Ambulance Trust is paid for every patient that it takes to hospital.

Now this may seem all well and good, but none of this money actually exists. It is figures on balance sheets that armies of accountants are being paid to move around.

Also, if an ambulance is held at hospital for more than fifteen minutes waiting to unload a patient, then the ambulance service fines the hospital two pounds fifty pence per minute per patient.

All this money is not being spent on patients, it is being spent on admin.

At the moment we don’t have a national health service, we have a loose alliance of competing businesses”.

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How to make an indulgent chocolate pud!

VERITE’S CHOCOLATE MARQUISE PUDDING

 

It’s that time of year when thoughts turn to Valentines – so if you want to make a traditional gooey chocolate pud – this is my favourite recipe.

I am not going to deny that this is full  of calories, but whenever I make it for a fund-raising dinner, somehow the money floats in!

Recently I was asked to write this out for two cookery books to raise funds for cancer, as it is relatively easy to make.

Ingredients
for 6 greedy people!

225g/8oz dark chocolate  (60-70% cocoa )
5 free-range eggs
100g/3½oz golden caster sugar
170g/6oz unsalted butter
vanilla essence or vanilla pod

Optional
splash or glug of brandy, cointreau or Grand Marnier – or one of the cream based chocolate or coffee liqueurs

To serve   Creme fraiche, cream or chocolate shavings to decorate top

Method

1. Place a heat-proof bowl over a pan of simmering water (important that the water shouldn’t touch the bottom of the bowl) and gently melt the chocolate in the bowl.  Crack the eggs, slip the yolks into the chocolate when it is melted, beat in, and remove from the heat.  Cool slightly. (Some people prefer to remove chocolate from heat and then add eggs, but oObviously you must be careful to see egg yolks are cooked if anyone is eating it that is pregnant, etc.

2.  Melt the butter in a pan over a low heat.

3. Whisk the melted butter into the chocolate mixture. If it gets too thick, add a couple of tablespoons of water – or brandy, etc.

4. In a clean bowl, whisk the egg whites (use electric whisk if you have one) .  When stiff, fold in sugar very carefully so it stays as stiff as possible.

7. Carefully fold the chocolate mixturte into the  egg whites with a metal or silver spoon, along with a few drops of vanilla essence or the seeds from inside a vanilla pod.  Add any brandy etc. to taste.

8. Spoon the chocolate mixture into pretty bowl and put in fridge.  It needs 3-4 hours to ‘set’, but you can make this day before and it will keep for at least 24 – 48 hours – provided you put a lock on the fridge door!

9. To serve, float cream on top, or add chocolate shavings.   If you want another – less rich -pud, thin orange slices goes well with this.

If you want a slightly lighter pud, you can add one or two extra stiffly-whipped egg whites.

Enjoy! And don’t forget that scientists now say that dark chocolate in moderation is good for us.  Problem is, I don’t think I do ‘moderation’ when it comes to chocolate!

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Simple cooking for the way we are

Mini-meals made easy

Many cooks making light work

Want to make mini-meals for yourself to see you through treatment days?

– Or you are the kind person who makes up little goodie-bags for friends in hospital

– Or you want to throw a party but hate making all those fiddly eats?

The KITCHEN at Parsons Green, in London’s fashionable Fulham,  has the answer.  It  runs fun courses giving easy lessons on making the food that will go down a treat – one super helpful one is called a CANAPE MASTER CLASS – with a twist.

Given by rugby-fan and Michelin Star chef Thierry Laborde from Brittan, he was a pupil of the legendary Alain Ducasse.  I found the twist came with Thierry’s attitude to a crass amateur like myself.  He was incredibly helpful if I mentioned that some ingredients weren’t a good idea – smoked fish could be a no-no for instance if on chemo – so he recommended “leave it out – the recipe won’t mind” .

Don’t think Thierry is all pompous and ‘cheffie’.  There wasn’t one four or five-letter word, he talked to us and gave us superb tips as part of his talk, and agreed that some farmers are taking the mickey out of customers with the way they load prices just because the food is organic.

Classes are 3 – 8  ‘students’ , and range from 3-year old kids to catering professionals who come to learn tips from Thierry.  The one thing they have in common is they are FUN.

And you learn!  Starting on our first Canape, Quails Eggs and Celeriac Remoulade, within a minute Thierry had told us to peel the eggs (boiled for two minutes) and pop them in to malt vinegar for two hours.  When they come out they are simple to peel.  So if you don’t like the thin membrame that surrounds a Quails Egg – this is the easy way to        get rid of it.This is how you do it!

Already around the table we were becoming neater with our chopping, and Thierry hadn’t    finished with the helpful advice.  Don’t bother to make fiddly little pastry cases – most good delicatessens or Waitrose sell them, but make sure they are the savoury ones as there are also sweet pastry cases.

Fish cakes are always popular, and Thierry’s advice was to boil the freshest fish in milk – leave it to one side to continue cooking, and then we had lovely moist fish to make our cakes.  But the potato should be dry.  Combine the ingredients with parsley, leek if you want a veg, and form fish cakes.  Dip these gently in flour, then beaten egg, then breadcrumbs (he uses Japanese ones).  Cook them in a lightly oiled frying pan until golden brown, freeze when cold, then take out and finish in a pre-heated oven at 180° for 5 minutes. This also makes marvellous meals for kids, who don’t notice the fish cakes are healthy!

More and more lovely Canapés were produced, with simple instructions;  these could be frozen, even a wonderful easy-meal of Croque Monsieur which would make a hearty snack, and a little tray of these goodies would make tasty treats to take to someone undergoing treatment at home, or if a friend is in hospital.

Thierry worked at many of the top restaurants here and in Europe, and organises different cooking sessions:

  • Kids’ clubs
  • Make-aways where you get to make a special dish and take it away
  • Master Classes
  • etc.

He has a sensible and practical attitude to cooking, saying, “if you have to put on weight, put on weight properly”, as he advised us to scrape butter over the outside of Croque Monsieur, to give it “a lovely golden colour”.  But he is very slim, so obviously eating well doesn’t necessarily make you fat.

All the sessions are priced at £89 per person, and the washing up is done by willing minions! and you get all the canapes you made packed in special boxes to take home.

http://www.visitthekitchen.com

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Hospital Care at Home

Chemo Treatment
Flickr

House of Lords launch for innovative health care programme.

Lord Darzi was constantly saying he wanted patients discharged earlier, and in February a report was launched which  showed by treating chemo patients at home, the NHS could save between £46 – £73 million a year – according to the report  ‘Hospital Care at Home’.

Now the current report produced by the Daily Telegraph is lauding this way of treating patients.

‘Home care’ is already happening in some areas,delivered by a company called Healthcare at Home.  Spokesman Steve Davies says in a recent survey of over 500 patients in Britain who now receive chemo in the comfort of their own homes, 86% said their quality of life was better, 100% of Consultants were in favour of the scheme (now they have evaluated the effects), and the only complaints were from a tiny minority who said they missed the ‘buzz’ of a hospital.

“I would like to think that we have had some influence on the government”, says Steve.  “They have seen a lot of our work.  Not only do patients find treatment at home to be highly acceptable, but the NHS can also save serious amounts of taxpayer’s money doing it this way, or can treat more patients for the same amount”.

So if you are faced with chemo, and don’t want the long journey to the treatment centre, or would rather have one-to-one attention from a nurse who stays with you during the whole process, contact www.hah.co.uk

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