Monthly Archives: January 2010

"Nothing Personal" gives you ammunition to fight for better cancer care

Nothing Personal shows up NHS treatment

Nothing Personal shows up NHS treatment

NOTHING PERSONAL

is a ‘how I suffered’ type of book.  So why am I singing its praises?

Author Mitzi Blennerhassett recounts her problems as a cancer patient in a matter-of-fact way.  We can all relate to her experiences, and think, “she had this as well – so why am I being told no-one else does?”

But when she was told this, she went on to do something about changing the NHS and medical culture; much to our benefit.

This should give us courage to face up to uncaring oncologists and nurses with too much to do, and no time to think if what they are saying is insensitive.  Or to care about our pain.  We all have days when we have to grit our teeth to bite back an angry retort, because a medical professional has not thought what they are telling us is going to impact on our lives – and the consequences.

I would love to give this book to the nurse who told a fellow patient “you are ONLY a patient here” when she had, as an eminent scientist, questioned her treatment.  The patient turned out to be right, and it is time the medical profession in the UK realised that if we have cancer we HAVE to become clued up with medical knowledge, otherwise we get into trouble.  I wish I had realised this years ago, and given the anaesthetist who assisted at my lumpectomy a lecture about what polio patients need, before suffering two months of ill-health she caused,  after what should have been a simple operation

My next operation saw a much bolder patient emerge, and full marks to Mario Petrou, the brilliant surgeon at the Royal Brompton.  He listened to my concerns, and together with his anaesthetist, Dr. Hunter, devised a plan for my seven-hour operation.  Result – NO problems and I felt ‘almost’ on top of the world afterwards.  So this book might encourage more of us to question and comment – to our advantage.

Mitzi comments on the fatuous statement “how are you feeling today”.  Next time I shall be honest and say “b – awful, otherwise I wouldn’t be here to see you.”  And if anyone dares to ask me again, when I have told them I am in pain,  “on a scale of 1 – 10, how do you feel?”  the reply will be shouted  LOOK AT MY NOTES.  I have had polio.  It is known to be one of the most painful diseases on the planet.  If a polio patient says they are in pain, believe me, WE ARE.

So in a funny way this book will cheer you up.  Mitzi  comments on the appalling lack of hygiene and privacy in so many hospitals, how some doctors give information in a factual and sensible way – others fudge the issue so that the patient ends up delaying treatment because they think it isn’t urgent.  As Prof. Karol Sikora says in his foreword, “This is the story of just one person but it is repeated time and time again by many”.  Well, if Mitzi’s book gives you courage to point out what is wrong and do something to improve matters for yourself, it will have done a good job.

She also comments on the appalling lack of knowledge and care in handling side effects from the drugs she was prescribed.  Next time you are told “I’ve never seen this side effect before”, DON’T take the eminent specialist’s word – if it has happened to you, you have the problem, and specialists are there to sort these out.  That’s what they are paid for. By you, with your taxes and/or privately.

So read her book;  realise you are not alone, and go out and do something about it – for your sanity and those patients who come after you.
Published by Radcliffe   ISBN 13:  978:  184619  010 £14.99 http://www.radcliffe-oxford.com

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Good Skin care needn't be expensive

Jergens4You get what you pay for – most times

Whilst researching looking afterour skin, I generally  found that the better the skincare, the more it cost.  I tried lotions and lotions of potions, and the cheap ones just did nothing.  Except for a ‘new kid on the block that has come in from America, Jergens.

So how do they keep the price down without compromising on quality?

  • ‘Inexpensive’ packaging
  • No expensive ingredients.  With some expensive creams their effectiveness comes from very costly ingredients.  Jergens has opted for good but not top price ingredients.
  • No expensive perfume.  Today’s creams can contain expensive perfumes which are not going to cause a reaction – hence are costly.  But my favourite Jergens body moisturiser – Total Nourishment – has a very faint floral scent;  not expensive and not obtrusive or chemical.
  • Volume.  Being a massive US company they can make in vast quantities undreampt of by rival creams, hence they can keep cost down
  • Mega-sales.  They sell through Boots, Tesco, Superdrug and Sainsbury.  Luxury brands know that their products are too expensive, so would never get the advantages of selling through these massive outlets.

So will I change?  Yes and no.  Yes, Total Nourishment, and its sister product, Cocoa Butter Body Moisturiser will be on my shelf for everyday use;  I am using them now and my skin is lapping them up.  No – for when I need an extra boost after starting a new drug which has caused havoc with my skin, I will be using  one of the clinically-trialled products.  But once my skin has settled down, Jergens will be useful for everyday use.                                                                                                         Cost:  £4.99 for 200 ml.

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Being Internet-savvy helps when dealing with cancer

Doctors admit that those who understand and research their cancer treatment, often recover better and more quickly.

As a patient, I found that using the Internet sensibly, I was able to work out more effective treatment and find which cancer centres could give me better advice.  When all my UK hospital could offer to deal with skin lesions caused by tamoxifen, was to tell me “it’s your age”, and no advice given at all;  thanks to the Internet I found that La Roche Posay in France deals with around 8,OOO cases similar or worse than mine every year, so went there.  Thanks to their advice and prescriptions, I was able to stay on the drug;  and my skin cleared up almost immediately. And they told me my lesions were certainly NOT due to age!

If you read stories on this website, many of them concern research being carried out at US cancer hospitals and research centres.  Recently US News has published their annual list of top cancer hospitals, and highlights the fact that all the top ones have excellent research facilities, and produce patient-friendly websites that are easy for lay people to understand.

So if you have a problem or query, it is worthwhile going onto a US website for more information.  Some of the addresses are mentioned in the Contacts pages, but otherwise Google the name of the hospital for the contact.  Don’t be frightened – their websites are written in remarkably clear English – and generally very easy to understand, explaining even the most complex problem in a way that comes over as sensible and informative.

Here is list of top 2O, together with ranking allocated by US News – don’t pay too much attention to these rankings  – all the centres in the top 2O are worth looking at.  If you have a rare cancer, there are 9OO listed in their list, all of which have received plaudits:

University of Texas M.D. Anderson Cancer Center, Houston
62.4%     100.0
2
Memorial Sloan-Kettering Cancer Center, New York
58.9%     94.1
3
Johns Hopkins Hospital, Baltimore
30.6%     62.6
4
Mayo Clinic, Rochester, Minn.
27.8%     59.6
5
Dana-Farber Cancer Institute, Boston
28.2%     48.6
6
University of Washington Medical Center, Seattle
18.7%     47.7
7
Massachusetts General Hospital, Boston
14.2%     43.8
8
University of California, San Francisco Medical Center
11.7%     40.4
9
Duke University Medical Center, Durham, N.C.
10.3%     38.3
10
Stanford Hospital and Clinics, Stanford, Calif.
12.6%     37.2
11
Ronald Reagan UCLA Medical Center, Los Angeles
7.0%     36.7
12
Cleveland Clinic
7.6%     35.7
13
Vanderbilt University Medical Center, Nashville
5.6%     34.1
14
Hospital of the University of Pennsylvania, Philadelphia
5.1%     33.7
15
Brigham and Women’s Hospital, Boston
5.4%     31.6
16
Moffitt Cancer Center
4.2%     31.0
17
University of Chicago Medical Center
3.5%     30.6
18
Ohio State University James Cancer Hospital, Columbus
2.3%     30.4
19
University of Michigan Hospitals and Health Centers, Ann Arbor
4.2%     30.3
20
Fox Chase Cancer Center, Philadelphia
6.1%     30.1

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Is this too much information?

Facebook, Inc.
Image via Wikipedia

Latest story from Association Press

If you thought there was enough personal information floating around on Facebook, I wonder what you think of this?

Latest posting is a apparently a campaign designed to raise awareness about breast cancer, asking women to update their status with one simple word: the colour of their bra.  Give them their due, Facebook Inc. says it hasn’t been able to find out who came up with the idea.

Andrea Rader, a spokeswoman for the Susan G. Komen for the Cure foundation, said the group was not behind the campaign but called it “a terrific tool for raising awareness.” She added, “We just hope people act on it — get educated, get a mammogram.”

Me?  after hospital treatment where one feels one loses one’s identity in the necessary factory-assembly line of cancer care – do we really want the world to know what colour is our underwear?  Am I too sensitive a bunny?

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