Society: Cancer | theguardian.com

Forget funeral selfies. What are the ethics of tweeting a terminal illness? | Emma G Keller

Emma G Keller — Wed, 08 Jan 2014 18:40:03 GMT

Lisa Adams is dying of breast cancer. She has tweeted over 100,000 times about her journey. Is this educational or too much?

Lisa Bonchek Adams is dying. She has Stage IV breast cancer and now it's metastasized to her bones, joints, hips, spine, liver and lungs. She's in terrible pain. She knows there is no cure, and she wants you to know all about what she is going through. Adams is dying out loud. On her blog and, especially, on Twitter.

She has tweeted over 100,000 times about her health. Lately, she tweets dozens of times an hour. Her Twitter followers are a mixed bag. Some are also battling cancer or work in the medical field, others seem to follow Adams' life story like a Reality TV show. Here's a taste of what it's like:

Pain today is worst in days. Cannot get on top of it. I have 1)constant drip plus ability to do 2)on-demand drip, 3)emergency. All in use.
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014

But it radiates out to side of back ("radicular pain") and has nerve component of pain. Mixes with the lung pain/same side
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014

All morning docs and nurses go in and out so you may see answers to questions in spurts. I also sometimes nod off mid tweet...
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014

She has been scrupulous about keeping track of her seven year decline. Her journey began with six month routine postpartum checkup after the birth of her third child. You can read all about the details of her disease and treatment on her blog right up until about this morning, which is when she posted her latest entry, only a few hours after the previous one.

She begins each day with the same tweet:

Find a bit of beauty in the world today. Share it. If you can't find it, create it. Some days this may be hard to do. Persevere.
— Lisa Bonchek Adams (@AdamsLisa) December 27, 2013

Over the past few years she has tweeted more than 165,000 times (well over 200 tweets in the past 24 hours alone.) Her clear-eyed strategy of living with cancer for as long as she can has caught the attention of many women with breast cancer, several writers and thousands of fans from everyday lives all over the world. I heard about her in the process of organizing a Guardian US Living Hour chat on DNA and cancer tumors in early November. Before you knew it, she was in the chat having her tumor genome and her cancer trial discussed in detail. I never met her, but I swapped tweets and emails with her, and kept track of her health.

Which is why a few weeks ago I noticed she was tweeting a lot more and from a situation she described as agonizing. The clinical drug trial she was on wasn't working. Her disease seemed to be rampaging through her body. She could hardly breathe, her lungs were filled with copious amounts of fluid causing her to be bedridden over Christmas. As her condition declined, her tweets amped up both in frequency and intensity. I couldn't stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?

Social media has definitely become a part of Adams' treatment (I wonder what her hospital, Memorial Sloan-Kettering Cancer Center, thinks about that.) Tweeting makes her less lonely, it gives her a purpose, it distracts her from her pain, and the contact it brings clearly comforts her. Adams has managed to keep her dignity and her deft sense of humor intact as she has charted her decline.

As she tweeted a few hours ago:

"Why is she tweeting if it hurts so much?" I am sure people ask. It helps to distract me especially when I am alone (it's 6 AM here)
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014

Adams is not alone in doing this. Journalist Xeni Jardin live tweeted her cancer diagnosis two years ago and the long treatment journey. Jardin told the Guardian last year that she wasn't sure if she would be quite as "sharey" if she could go back in time.

It's clear that tweeting as compulsively as Lisa Adams does is an attempt to exercise some kind of control over her experience. She doesn't deny that. She sees herself as an educator, giving voice to what so many people go through. And she is trying to create her own boundaries, flimsy as they might be. She'll tell you all about her pain, for example, but precious little about her children or husband and what they are going through. She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate "team", but there is no mention of the cost. She was enraged a few days ago when a couple of people turned up to visit her unannounced. She's living out loud online, but she wants her privacy in real life.

In some ways she has invited us all in. She could argue that she is presenting a specific picture – the one she wants us to remember. "I do feel there will be lasting memories about me. That matters," she wrote to me in a direct message on Twitter.

The ethical questions abound. Make your own judgement.

Are those of us who've been drawn into her story going to remember a dying woman's courage, or are we hooked on a narrative where the stakes are the highest?

Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive? Is this the new way of death? You can put a "no visitors sign" on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch. Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?

We've put together a condensed timeline of Lisa Adams' tweets. You can also read her entire feed.

Emma G Keller

Higher breast cancer rates among white women down to lifestyle, finds study

Sarah Boseley — Wed, 08 Jan 2014 00:02:00 GMT

Greater risk mainly owing to choices such as alcohol consumption as well as lower breastfeeding and birth rates

Women's lifestyles, including how heavily they drink and how many children they have, are the reason why white females have higher rates of breast cancer than black and south Asian women, a new study finds.

The data comes from the Million Women Study, run by Oxford University, a survey large enough to make valid comparisons between the ethnic groups.

The study is investigating women's cancers and other health issues. More than a million white women between the ages of 50 and 64 were recruited between 1996 and 2001, alongside nearly 6,000 south Asian women and almost 5,000 black women.

The study, published in the British Journal of Cancer, found that south Asian women were 18% less likely to get breast cancer than the white women, while the black women had a 15% lower risk.

However, the differences between the groups were almost entirely accounted for by individuals' lifestyles.

Having more children and breastfeeding for longer is known to help protect women from breast cancer; a finding the Million Women Study, which is jointly funded by Cancer Research UK and the Medical Research Council, had already demonstrated. The white women had an average of 2.1 children, while the south Asians had 2.7 and the black women 2.9.

Far higher proportions of south Asian women (85%) and black women (83%) had ever breast fed compared with the white women (69%).

And, in relation to another risk factor, white women were more likely to have a close relative with breast cancer (10%), compared with black women (7%) and south Asian women (5%).

Some of these were factors that women could either do nothing about or were unlikely to want to change. Few modern women with careers would want to turn the clock back and have large families. Research also showed that the longer a woman spent breastfeeding the greater her protection. However breastfeeding for more than six months was considered impractical by most women wanting to return to work.

In the survey's look at alcohol consumption – a risk factor that is alterable – 75% of the south Asian women were non-drinkers, compared with 38% of black women and only 23% of white women.

The use of hormonal therapy during menopause has also been shown to increase risk – 22% of south Asian women and 29% of black women were taking HRT, compared with 35% of the white women.

Being overweight or obese was the only risk factor that appeared lower for the white women than in the black women (though it was almost the same for the south Asians). All the groups had an average BMI that was over 25, a level that doctors consider overweight.

Most of the black and south Asian women in the study were first-generation immigrants. The authors say that the lifestyles of their daughters and granddaughters could well change, which could bring increased breast cancer risks.

Toral Gathani, author of the study, from Oxford University, said: "It's important for women of all ethnic groups to understand what are the modifiable risk factors for breast cancer, such as obesity and excessive alcohol consumption, and to take measures to reduce their risk."

Julie Sharp, Cancer Research UK's head of health information, said: "Women can reduce their risk of breast cancer by cutting down on alcohol, keeping a healthy weight by eating a balanced diet and keeping active.

"If women notice any changes to their breast such as lumps, any skin or nipple changes, or changes in their size, shape or feel they should tell their doctor straightaway. It's probably not cancer, but if it is, getting it diagnosed as early as possible gives the best chance of survival." An early diagnosis, she added, would give the best possible chance of survival.

Sarah Boseley

Cancer: UK women have 10th highest rate for cases linked to lack of exercise

Haroon Siddique — Mon, 06 Jan 2014 07:00:17 GMT

About 12,000 of cases of bowel, breast and womb cancers a year could be prevented if people were more physically active, scientists say

Women in the UK have the 10th highest rate in the world for cancers linked to a lack of physical activity, research has found.

The estimated number of diagnosed cases of bowel, breast and womb cancers in 2012 was 78,935, about 12,000 of which could be prevented if people were more physically active, according to scientists.

When the figures, published by the International Agency for Research on Cancer, were standardised by age so that different countries could be compared on an equal basis, the UK had 133.3 cases per 100,000 people.

"It is worrying," said Dr Rachel Thompson, head of research interpretation at World Cancer Research Fund. "Not only are they [bowel, breast and womb cancers] related to physical inactivity, they are all related to excess body fats. It does look like lifestyle plays an important part. If people lived healthier lifestyles, a number of cases of cancer could be prevented."

Just 36% of British women meet the government's recommended physical activity guidelines of at least 30 minutes of moderate activity five days a week. After not smoking, maintaining a healthy weight is the best thing to do to reduce cancer risk.

Scientists estimate that about 12% of bowel and breast cancer cases and about 10% of womb cancer cases in the UK could be prevented if people were more physically active – about 12,000 cases each year.

Barbados has the highest incidence per 100,000 people, with 154.9 cases of the three cancers, but the top 10 is dominated by western countries, with France (fifth) and the US (eighth) also on the list.

Thompson said there were issues with the quality of data from Barbados and the Bahamas, the only other non-western country appearing in the top 10. Thompson added that western countries' rates could be pushed higher because of better registration of cases and more scanning, but that the sedentary lifestyles of many people in western countries were having an effect.

Statistics from the Eurocare-5 study published in Lancet Oncology last month suggested that bowel cancer was one of a number of common cancers in which the UK survival rate was lower than the European average.

Kevin Fenton, national director of health and wellbeing at Public Health England (PHE), said: "PHE are committed to helping to prevent cancer through promoting healthier lifestyles. This includes reducing obesity levels, which will in turn reduce the risk of some cancers and long-term illnesses. Through national campaigns such as Change4Life, the public is supported to adopt healthier lifestyles which include simple steps to healthier eating and taking regular physical activity."

Separate research published on Monday showed that the number of people dying from oesophageal cancer – affecting the gullet or food pipe – has risen by 49% in the past 40 years. The figures published by Cancer Research UK show that about 7,600 people (13 in every 100,000) die each year from oesophageal cancer, compared with about 3,800 in 1971 (eight in every 100,000). It is now the sixth most common cause of cancer death in the UK. The charity urged people with persistent heartburn, an important risk factor, to see their GP.

Haroon Siddique

It's cruel to deny cannabis to the terminally ill | John Kaye

John Kaye — Mon, 06 Jan 2014 05:25:34 GMT

John Kaye: Last year, NSW's minister for health rejected recommendations that cannabis should be decriminalised for those in pain at the end of their lives. But the fight isn't over yet

John Kaye

Pancreatic cancer patients forced to seek life-saving surgery in Germany

Paul Dinsdale — Sun, 05 Jan 2014 00:05:58 GMT

Dozens of British sufferers refused operation on the NHS travel abroad for treatment

Patients with pancreatic cancer are paying for surgery abroad when it is not offered on the NHS, as the number of cases of the fifth most deadly form of cancer rises.

Deaths from pancreatic cancer could overtake those from breast cancer by 2030, say experts. Several dozen patients have paid to have life-saving surgery at Heidelberg university hospital in Germany because, under guidelines for treating pancreatic cancer in England, some patients are being told their cancer is too far advanced or has spread to other organs, making surgery inadvisable.

Experts say clinicians in some European hospitals are less "risk averse" than in England and more willing to carry out surgery. In health systems in many EU countries, patients have direct access to a consultant or surgeon and health insurance schemes pay the cost of the surgery.

A report published two weeks ago by the all-party parliamentary group on pancreatic cancer called for radical improvements in NHS treatment of the condition, which kills about 8,500 people a year. It points out that survival rates for pancreatic cancer have not improved in the UK for about 40 years, and that while 20% of patients could benefit from surgery, only 10% are operated upon.

Many patients are not diagnosed early enough to benefit from surgery, and some see their GP four or five times with symptoms before they are referred to a hospital for investigation. Symptoms can range from abdominal pain and persistent indigestion to jaundice, and are often misdiagnosed as other conditions, such as dyspepsia or ulcers. Richard Charnley, a consultant pancreatic surgeon at the Freeman hospital in Newcastle, said: "One of the main problems in diagnosing the illness is picking up the early signs and, unless a patient presents with jaundice, GPs may not consider pancreatic cancer as a possibility.

"Then they may be referred for an endoscopy, which can take a few weeks, and then eventually a CT scan, which takes longer, and this picks up a lesion in the pancreas. Unfortunately, delays are built into the system and GPs need to elevate pancreatic cancer on their radar."

The prognosis even after an operation is not good – only 3.5% of patients survive for five years after successful surgery. On the positive side, the number of specialist pancreatic cancer surgeons has risen in recent years and patients are seen in 25 specialist centres around the country, which allows surgeons to improve their skills by treating a high number of patients and a good "case mix", which is vital for maintaining competence. The number of patients surviving for one year after surgery rose from 13.7% in 1999 to 18.3% in 2009, according to Charnley, who is chairman of a professional body representing pancreatic cancer surgeons.

"Another problem is that there are not many effective drugs designed to treat the condition, and we need more research into what works well," he said.

Steve Lewis, 59, from Swansea, was diagnosed in December last year after seeing his GP only once. "I went to my GP as I had been having continuous indigestion for some time, and she referred me to hospital immediately. I was seen within two weeks, had some investigations and a CT scan. I was then told it was inoperable, which obviously I wasn't that happy about, and was started on a course of chemotherapy and radiotherapy. I'd lost around 15kg in weight before that, but after radiotherapy, I started to put weight back on.

"Before my radiotherapy, the surgeons in Heidelberg agreed with my consultants here that surgery was not advisable, but later, as I was doing well, they said they would be prepared to take a shot at it, so I went for the operation in September. Unfortunately, once they had gone in, they found that the tumour was wrapped around one of the arteries, and it would be too risky to proceed, so they stopped the operation. They had told me this was a possibility, so I had to accept it. I took around 10 days to recover in hospital and I'm now discussing next steps with my consultant in Swansea." The operation cost €51,000, which is being paid for under Lewis's company health-insurance scheme, and the hospital has agreed to refund a large proportion of this as the operation was not completed. Lewis said his experience with the NHS in Wales was very good, but that GPs in general need to be more aware of the symptoms of the disease.

The report by the by the all-party parliamentary group calls for a "wholesale review" of pathways between primary and secondary care for referrals and investigation of the disease, a comprehensive national audit of pancreatic cancer treatment similar to that for bowel cancer, and an awareness-raising campaign about the symptoms of the disease.

At an event at the Houses of Parliament to launch the report, the health secretary, Jeremy Hunt, said pancreatic cancer was a disease that the NHS had been "least successful" at treating in recent years. "We have spent £140m on improving early diagnosis of cancer and we need to do the same as we did for breast cancer, namely, to establish targets and set better standards. I know this is a real problem, as I have seen a number of cases in my own constituency where it has not been picked up early enough," he said.

The UK has lagged behind many other European countries in survival rates across all cancers, with the most recent figures showing the UK coming 27th out of 35 countries surveyed.

Paul Dinsdale

My brother died of cancer and now I can't stop thinking I've got it too

Fri, 03 Jan 2014 14:08:26 GMT

I'm a medical student and am surrounded by people with health problems all day. My obsession that I am also ill is seriously affecting my life. What should I do?

I'm a 22-year-old medical student. My brother was diagnosed with gastric cancer at 23 and passed away within three weeks of the diagnosis. It was very traumatic for me and my family. We are all still very depressed, and I also suffer from terrible anxiety that I have a "hidden" cancer, just like my brother. I always interpret every tiny niggle as the worst-case scenario. Because of my studies, I am often in a hospital, surrounded by people with health problems. I've started to examine my lymph nodes every single day and am finding the situation very hard to live with. How do I resolve it and move on?.

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• If you would like fellow readers to respond to a dilemma of yours, send us an outline of the situation of about 150 words. For advice from Pamela Stephenson Connolly on sexual matters, send us a brief description of your concerns.

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Best book for anyone with the holiday blues: Survival Lessons

Emma G Keller — Tue, 31 Dec 2013 14:46:41 GMT

Alice Hoffman offers beautifully written, priceless advice for anyone finding the joys of the season rather too much to bare

Emma G Keller

Brian May undergoing 'urgent tests' over cancer fears

Mon, 30 Dec 2013 19:59:07 GMT

Queen guitarist tells fans MRI scans showed bone abnormalities but that no cancer has been found and tests are ongoing

The Queen guitarist Brian May has revealed how he has been undergoing "urgent" tests over fears he could have cancer.

The rock star told fans on his website that his doctor organised scans, the latest of which was on Monday, after he complained of severe pain that affected his ability to stand up.

MRI scans showed there were "abnormalities in the bones", leading to further investigation over the Christmas period.

May, who has been leading a campaign against the culling of badgers, said he was feeling optimistic despite the health scare as the results of tests so far have revealed no sign of cancer.

The 66-year-old said in a website post on Saturday that he started to get "bad pains in the backside" three months after having knee replacement surgery earlier this year.

"So around Christmas I've been having a succession of blood tests, ultrasounds, and various kinds of scans, to see if they could rule out various kinds of cancer.

"Now, on hearing the 'C' word something happens inside you … of course. I've seen so many of my dear friends fighting it … and my Dad lost his battle at age 66, exactly the age I am now.

"So over the last few days I've been in various states of unrest. But the great thing has been that the team my GP assembled to check out the possibilities has moved heaven and earth to gather all the information I need quickly over the Christmas period … not an easy time."

An update on brianmay.com on Monday thanked supporters for their kind words. May, married to actor Anita Dobson, wrote: "I've been overwhelmed by the amazing messages you've been sending me, folks, since I wrote about my 'Health Scare'.

"It's taken me by surprise – for many reasons. I really didn't realise how much you guys were gunning for me … it's great to know that, and I can't thank you enough. It puts a smile on my face.

"But I didn't realise that biting the bullet and mentioning the 'C' word would unlock such an avalanche.

"I now realise that so many of you have been wrestling with this all along, personally, or in family or friends, and, like me, found it hard to share.

"Hearing of your experiences, and courage, and hopes, and solutions, has been a massive eye-opener for me."

He said he would know more soon and was getting on with preparations for a forthcoming tour while he waited for the results.

Specialists have been "really positive" and told him that even if tests did reveal cancer, it would be "almost certainly treatable with success", May added.

His publicist said he would not be making a statement in addition to the posts on his website.

The most popular stories on the Guardian website in 2013

Esther Addley — Fri, 27 Dec 2013 16:07:06 GMT

From Edward Snowden to Miley Cyrus, the most viewed stories of 2013 on the Guardian website varied in seriousness and style

So that was 2013 – the year that Nelson Mandela died, the Pope resigned, Syria spiralled further into chaos and Miley Cyrus licked a hammer. But what were the stories that most gripped Guardian readers? Clue: they weren't all about Margaret Thatcher.

Based on the number of visits to each page, here are the most viewed stories of 2013 on theguardian.com. Figures are correct as of 20 December 2013; we have not listed multiple articles on the same topic.

In the news

1) Edward Snowden: The whistleblower behind the NSA revelations

Monday 10 June 2013

"My name's Ed Snowden, I'm 29 years old. I work for Booz Allen Hamilton as an infrastructure analyst for NSA in Hawaii." With those words, the young whistleblower revealed he was the source of the biggest intelligence leak in the history of America's National Security Agency, and became the face of a story that has convulsed governments and set the news agenda around the world. This exclusive video interview by reporter Glenn Greenwald and filmmaker Laura Poitras became the single most viewed Guardian story of 2013.

We have not listed multiple stories about the NSA (or any other topic) on this list, but the fact that this was one of six stories about NSA secret surveillance in the top 20 articles ranked by page views makes Snowden and his revelations by some distance the Guardian's story of the year.

3.8m page views, 6,194 comments

2) Why have young people in Japan stopped having sex?

Sunday 20 October 2013

Almost two-thirds of men and half of women aged between 18 and 34 in Japan were not in any kind of romantic relationship in 2011. The following year, fewer babies were born in the country than in any year on record. Adult incontinence pads outsold baby nappies for the first time in 2012. What is going on? Abigail Haworth investigated in a piece for the Observer, concluding that marriage, for young Japanese, "has become a minefield of unattractive choices".

3.2m page views, 1,263 comments

3) Boston bomb suspect Dzhokhar Tsarnaev captured – live

Saturday 20 April 2013

The bombing of Boston's marathon on 15 April convulsed the world's media and shut down much of one of the US's great cities while police sought two suspects. Tamerlan Tsarnaev was killed in a shoot-out four days later, but as this live blog detailed, his older brother Dzokhar was later tracked to a suburb and arrested while hiding out in a boat.

2.1m page views, 4,806 comments

4) Michael Douglas: Oral sex caused my cancer

Sunday 2 June 2013

The Guardian's Xan Brooks was no doubt expecting the usual bland promotional platitudes for Behind the Candelabra during his assigned slot with Douglas in Cannes; instead, the actor dropped a bombshell. His recent throat cancer, he believed, had been caused by the sexually transmitted virus HPV, which he had caught while performing cunnilingus. Medical experts confirmed this was possible; they were more sceptical about Douglas's claim that cunnilingus could also cure the condition.

2.0m page views

5) Aldi confirms up to 100% horsemeat in beef products

Saturday 9 February 2013

Aldi was far from the only retailer to have been caught with extract of hoof in its minced beef products, but this story, almost a month after the scandal first broke, proved of particular interest to readers. The retailer said it felt "angry and let down", the story reported, after tests on Today's Special frozen beef lasagne and Today's Special frozen spaghetti bolognese found they contained between 30% and 100% horsemeat.

1.8m page views

6) Royal baby: Duchess of Cambridge gives birth to a boy – live

Monday 22 July 2013

"The Duchess of Cambridge has been admitted to St Mary's hospital in London in preparation for the birth of her first child," we wrote. "And so it begins," commented RRBA123 below the piece. Seventeen hours later, the Duchess had been delivered of a son and many readers made enthusiastic use of the opportunity to share their views about the royal family. Glad to be of service.

1.5m page views

7) US doctors cure child born with HIV

Monday 4 March 2013

We don't know the child's name or sex, but somewhere in Mississippi state is a toddler of two and a half who was born with HIV but who, after treatment, needs no more medication and is highly unlikely to be infectious to others. "We expect that this baby has great chances for a long, healthy life," a doctor caring for the child told the Guardian. It was, she said, the first ever "functional cure" of an HIV-positive child.

1.2m page views

8) Pope Benedict XVI announces resignation – live

Monday 11 February 2013

Eight years after a puff of white smoke heralded his appointment to the position, 85-year-old Joseph Aloisius Ratzinger, aka Pope Benedict, became only the second of 265 pontiffs to step down from the role since St Peter, declaring that his strengths, "due to an advanced age", were no longer up to the job. He would be succeeded a month later by Jose Mario Bergoglio, now Pope Francis and a mere 77 years old.

1.13m page views

9) Glenn Greenwald's partner detained at Heathrow airport for nine hours

Monday 19 August 2013

David Miranda is a 28-year-old from Brazil, and the partner of Glenn Greenwald, the reporter who first revealed Edward Snowden's NSA leaks in the Guardian. At 8.05am on a Sunday morning in August, he had landed in London in transit from Berlin to his Rio home when he was arrested by British officers and questioned for nine hours under terrorism legislation. Miranda was released, but officials confiscated his mobile phone, laptop, and memory sticks, which are still being examined by the Metropolitan police.

1.1m page views

10) Meteorite slams into central Russia injuring 1,100 – live

Friday 15 February 2013

"I was driving to work, it was quite dark, but it suddenly became as bright as if it was day. I felt like I was blinded by headlights." Viktor Prokofief was one of thousands to witness the meteorite streaming across the sky over the central Urals; happily, he was not one of the 48 who were hospitalised as a result of the sonic blast that accompanied it. The Russian Academy of Sciences said the rock weighed 10 tons and entered the atmosphere at a speed of 333,000 mph. Fortunately, it broke up between 18 and 32 miles above ground.

1.0m page views

And the rest

1) Top five regrets of the dying

Wednesday 1 February 2012

Bronnie Ware, a palliative care nurse who spent five years working with people close to death in Australia, wrote a blog about their dying epiphanies before compiling them into a book. This summary of her findings was first appeared in early 2012, but was still the second most read article anywhere on the Guardian site this year. The most common regret of all? "I wish I'd had the courage to live a life true to myself, not the life others expected of me."

3.6m page views, 438 comments

2) Yasiin Bey (aka Mos Def) force-fed under standard Guantánamo Bay procedure – video

Monday 8 July 2013

In a distressing four minutes and 38 seconds, filmed for the Guardian and the campaign group Reprieve by the Bafta-winning documentary-maker Asif Kapadia, the rapper agreed to be force-fed in the same way as 45 inmates at Guantánamo Bay were undergoing each day.

2.6m page views

3) Sinead O'Connor's open letter to Miley Cyrus

Thursday 3 October 2013

"Dear Miley, I wasn't going to write this letter…" 2013 saw a rash of open letters – Stephen Fry wrote to the IOC, Steve Coogan wrote to David Mitchell, Edward Snowden wrote to the people of Brazil – but only one of them involved tongue-flashing pop linkbait Miley Cyrus and a warning not to let the music industry "make a prostitute of you". Sinead O'Connor may have meant it "in the spirit of motherliness and love"; Cyrus didn't quite see it that way.

2.4m page views

4) Can vegans stomach the unpalatable truth about quinoa?

Wednesday January 16 2013

Who says Guardian readers are a bunch of sandal-wearing hand-wringers knitting their own organic hemp underwear and obsessing about the origins of their lentil homebrew? Uh, OK then. This column by Joanna Blythman warned ethical consumers that they were unwittingly driving quinoa prices up in Peru and Bolivia, putting the once-staple grain beyond the reach of poor people there. Sometimes it's hard to be a lefty.

1.8m page views, 1,139 comments

5) Russell Brand on Margaret Thatcher: 'I always felt sorry for her children'

Tuesday 9 April 2013

The comedian's periodic columns for the Guardian this year rarely failed to cause a stir, but this one, about Thatcher's death, proved particular catnip. "When I was a kid, Thatcher was the headmistress of our country," Brand wrote. "She became leader of the Conservatives the year I was born and prime minister when I was four. She remained in power till I was 15. I am, it's safe to say, one of Thatcher's children. How then do I feel on the day of this matriarchal mourning?" Lots of people wanted to know.

1.6m page views, 2,575 comments

This article was amended on 31 January, 2013. The original misspelled the name Haworth as Howarth. This has been corrected.

Esther Addley

Colchester hospital accused of serious failings with cancer care

Haroon Siddique — Thu, 19 Dec 2013 17:37:21 GMT

Essex trust medical director accepts NHS England report identifying diagnosis and treatment delays and 'unsafe records'

Serious failings in cancer services at Colchester hospital have been identified in an official report which warns that patients may have suffered harm as a consequence.

NHS England reviewed the care at Colchester hospital after the NHS regulator, the Care Quality Commission, found staff were bullied and pressured into falsifying information about patients' cancer care.

The CQC review prompted an investigation by Essex police, which is continuing.

The NHS England report, published on Thursday, found failings in the organisation, management and infrastructure of cancer services.

The shortfalls included "unwarranted delays to diagnosis and treatment" – which the report said, could have endangered patients – as well as unsafe information and records systems.

"More worryingly, the immediate review confirmed the CQC finding that some trust staff had a lack of confidence that concerns would be listened to, borne out by experience of trying unsuccessfully to do so in the recent past," the inspection team said.

The review found no documented cancer strategy for Colchester hospital university NHS foundation trust, which was placed in special measures last month.

There was an absence, in many cases, of clear pathways describing the flow of patients through diagnosis and treatment, and there were issues with recording and tracking important data. Staff faced an "excessive or pressured workload".

Five of the pathways – for urology, cancer of unknown primary origin, sarcoma, brain and central nervous system, and skin cancer – were described as particularly problematic.

Recommendations included creating up-to-date pathways, improving the handling of information and making sure cancer services were adequately staffed.

The report was published the day after it emerged that the trust's chief executive, Gordon Coutts, was leaving. Coutts, who had been on sick leave, expressed regret on Wednesday about the trust's problems with cancer services.

The trust's medical director, Sean MacDonnell, said the group accepted the report and recommendations in full.

MacDonnell said: "The report identifies a number of problems in our cancer services which are extremely concerning but which we have started to address.

"However, it is important to stress to current cancer patients and their families that the main issues are with our processes, which we are determined to put right, and the report does not question the quality of chemotherapy, radiotherapy or surgery for patients with cancer."

He said the trust was sorry for the worry, distress and concern caused for patients, relatives and carers, and that it had already started making improvements.

Haroon Siddique

Colchester hospital chief executive quits amid cancer waiting lists scandal

Wed, 18 Dec 2013 13:40:32 GMT

Dr Gordon Coutts headed hospital under police investigation over claims that staff falsified patients' cancer care records

The chief executive of a hospital under police investigation over allegations it manipulated cancer waiting times has resigned.

Dr Gordon Coutts, who is on sick leave, will not return to Colchester Hospital University NHS foundation trust by "mutual agreement".

Coutts said in a statement: "I realise that this is an extremely difficult time for the trust as it seeks to understand where it has failed patients in the past and seeks to rebuild the confidence of patients, the public and stakeholders in the many excellent services it offers.

"Underpinning this will be the need to lead and support staff to deliver high quality and safe services.

"I regret that there have been problems in the trust's cancer services.

"As chief executive I always took my responsibility for what happened in the organisation very seriously. I am sorry that some of our patients were let down and that what has happened may have damaged local people's confidence in their hospitals."

Last month, the trust was put in special measures after a Care Quality Commission (CQC) report found a number of cancer patients suffered "undue delays".

CQC inspectors found inaccuracies with waiting times data relating to cancer treatment.

Staff told inspectors they were "pressured or bullied" to change data relating to patients and their treatment to make it seem as though people were being treated in line with national guidelines.

As a result some patients may not have had the treatment they needed in time, according to the CQC.

Coutts said he was "extremely proud to leave behind a highly competent and dedicated leadership team" that was making improvements.

"I should also like to take this opportunity to thank all of the many excellent staff who work so hard for patients and who I know will ensure that any lessons learned from the recent events will reinforce the trust's commitment to deliver the very best and consistent patient experience."

Tim Roberts, regional organiser of Unison, says: "Mr Coutts should have resigned weeks ago.

"I am very proud that it was Unison members who blew the whistle about what was going on in cancer services after management tried to bully them into changing the data and threatened them to keep quiet about the dodgy practices.

"It seems that some critically ill patients did not receive the appropriate treatment at the right time because of the falsification of data.

"He was the leader of the organisation and was ultimately accountable for patient safety.

"We hope the trust board will move quickly to recruit a new permanent chief executive who can lead the organisation out of the mess."

Sex after cancer: 'Patients should not feel that bringing up sex is too trivial'

Frederika Whitehead — Wed, 18 Dec 2013 11:58:59 GMT

With more focus on rehabilitation, many people can overcome the effects of cancer on their sex lives with small adjustments

"It seems trivial almost when your life is on the line to ask the oncologist about having sex. You think, 'Thank God I'm here and I'm alive.' And, does it really matter if I can't have sex again? Because the bigger picture is, well, you kept me alive.

"But on the other hand, my husband and I have been through a lot and pain-free sex would be nice."

Angela Walker, 57, has been living with ovarian cancer and its after effects for a decade. When she was undergoing chemotherapy in 2003, sex was difficult and even now, five years clear of the disease, she remains tender.

She is not alone. A survey by Macmillan found that 72% of cancer patients said their sex lives had suffered after diagnosis. Some cancer surgeries may affect erectile function or the condition of the vagina and various cancer treatments – chemotherapy, hormone therapy, radiotherapy – can disrupt the hormonal balance leading to a loss of libido. Some treatments may cause early menopause in women, which can mean the vaginal wall becomes dryer and thinner resulting in painful sex.

Dr Sarah Blagden, an ovarian cancer specialist at the Garry Weston cancer centre at Hammersmith hospital in London, is aware of the problem. But, she only discovered that her patients may be having trouble resuming their sex lives after treatment a few years ago when she brought the issue up with one woman who broke down in tears.

From then on, Blagden made a point of asking her patients about their sex lives and was surprised by how many said they were having problems.

"A lot of patients feel that bringing up their sex lives is too trivial just after the oncologist has saved their lives. But doctors are increasingly realising, as more people survive cancer, that they have to rehabilitate patients as well. They have to help them put the whole cancer experience behind them and resuming their sex lives is part of that."

Walker agrees that sex doesn't often get discussed. "I know other women who have cancer who don't have sex because they've tried and it's really painful. I think it's important that women hear this and know that it's not just them ... We all think we talk about sex, but we don't really."

In a survey, Blagden conducted of just under 100 ovarian cancer patients, vaginal dryness was the predominant sympton, affecting 87% of those who were sexually active. Lack of desire was a factor for 43% of the respondents and fatigue was a preventative factor for 30%.

There are treatments that can help, however. And, in Blagden's experience of working with people with ovarian cancer, she has found that almost all of her patients managed to overcome the effects on their sex lives by making small adjustments.

Blagden says: "For many women, sorting out vaginal dryness will be the key to improving their sex life ... It is worth trying over-the-counter vaginal moisturisers like Replens or Sensilube in addition to lubrication. Topical oestrogen creams can also be useful."

Both Blagden and Walker want more doctors to raise the issue. Warning patients that their vaginal walls might be a bit dry and that there are vaginal moisturisers on the market can stave off upset and embarrassment.

For men, meanwhile, erectile problems may be tackled by taking Viagra, having injections or using a suction pump to gain and maintain an erection.

Depression and feelings of inadequacy are also common among both sexes after cancer.

Blagden refers her patients to a psychosexual counsellor if that seems appropriate. "Fear of pain can lead to loss of desire," she says. Psychosexual counselling can help to "reverse the fear".

Catherine Hood, a doctor and a psychosexual counsellor at the Raymede Clinic and the LOC oncology centre, London, says: "Cancer affects people's consciousness and how they feel about themselves. It knocks their confidence and affects how they share themselves with their partner ... Sex is an emotional act: people have to feel right, some people find it very difficult to let go, people who have been diagnosed with cancer often batten down their emotions to get through it and they have trouble trusting themselves, they don't trust their body. It has let them down."

Hood says these fears can be assuaged by providing information and reassurance. Timing is key to treating depression and psychosexual issues – catching the problem early and counselling patients before it becomes overwhelming or entrenched is important.

Walker realises the importance of tackling the problem early. She says: "It's a bit lonely having cancer, especially afterwards. When you are being treated you've got all those dates on your calendar, but afterwards you are floundering a bit because you are not quite sure what you are supposed to do. Side-effects like problems with sex fall by the wayside because the hospital staff focus on treating the cancer itself."

Frederika Whitehead

Cancer death rates in UK down by more than a fifth since 1990s

Wed, 18 Dec 2013 06:30:00 GMT

The disease killed 220 out of every 100,000 people in 1990 but figure is now down to 170, says Cancer Research UK

Cancer death rates in the UK have dropped by more than a fifth since the 1990s, according to figures from the charity Cancer Research UK.

In 1990, the disease killed 220 out of every 100,000 people. By 2011, the charity found that this figure had fallen to 170 per 100,000.

Improvements in disease prevention, surgical techniques, targeted radiotherapy and drug treatments were all said to have played a part in reducing the death toll.

The fall in death rates is despite rising numbers of cancer cases being diagnosed, largely because cancer is more common in an ageing population.

Prof Peter Johnson, Cancer Research UK's chief clinician, said: "Twenty years ago I was training to become a cancer specialist, excited by the findings we were making in the laboratory and desperate to see better ways for us to treat the disease in the clinic.

"We needed to give patients more options and better news about their future. I was impatient for more advances sooner and I still am. But clearly we're moving in the right direction. I've personally seen, in my clinics, incredible advances in cures for cancers like leukaemia and improvements in treatment options for prostate cancer.

"But no clinician, no researcher and no patient will be happy until we've driven down the death rate even further through research."

The Cancer Research UK report shows that men are faring slightly better than women. During the decade between 1990 and 2011, cancer mortality for women fell by 20% from 185 to 147 per 100,000 and for men by 26% from 277 to 203 per 100,000.

The figures were released to mark the launch of the charity's latest campaign to raise awareness of the role of scientific research in beating cancer.

Groundbreaking science in the 1950s led to lung cancer death rates plummeting by 41% in the last 20 years, said the charity.

Research promises to have a similar impact on bowel cancer. A 16-year trial funded by Cancer Research UK has shown how a one-off screening test for bowel cancer could cut deaths from the disease by 43% and potentially reduce new cases by a third.

Harpal Kumar, the charity's chief executive, said: "The words 'you have cancer' are among the most devastating a patient can hear. And for far too long, far too many people have had those words ringing in their ears as they leave the consulting room. Today cancer is not the death sentence people once believed it to be.

"As these new figures show, mortality rates from this much-feared disease are dropping significantly as the fruits of research are producing more effective treatments with fewer side effects. But while we're heading in the right direction, too many lives are still being lost to the disease, highlighting how much more work there is to do. Our aim is that one day everyone will beat cancer and the more research we can fund, the sooner that day will come."

Almost a tenth of adults think coffee causes cancer

Mon, 16 Dec 2013 00:01:02 GMT

Charity finds a tenth of adults think coffee causes cancer and aids weight loss, but there is no evidence for either assumption

Almost a 10th of adults mistakenly believe that coffee causes cancer, according to research by a leading charity.

The survey of 2,000 adults found 9% of those polled thought drinking it could lead to the disease while 10% saw caffeine as the key to weight loss.

But the World Cancer Research Fund said there was no scientific evidence for either assumption.

The WCRF said that research has in fact shown that coffee can have a preventative effect against womb cancer and there are suggestions it may protect against liver cancer.

Meanwhile, more than one in five believe caffeine is the "most dangerous" substance in coffee, when the highest health risk associated with the drink is sugar and full-fat milk or cream added to it, the charity said.

Dr Rachel Thompson, head of research analysis at the WCRF, said: "New evidence from our Continuous Update Project (CUP) suggests drinking coffee may decrease the risk of womb cancer, but there are still too many unanswered questions – such as how many cups we should drink, or how regularly – for us to provide any advice on coffee drinking.

"The CUP has found no consistent evidence that suggests coffee increases or decreases the risk of any other cancers but we are continually reviewing the evidence to see if this changes."

Cancer's lost generation: the teens and young adults 'forgotten in the middle'

Sun, 15 Dec 2013 20:00:03 GMT

While overall cancer survival rates have improved, young people fare less well – and their symptoms are often dismissed

After six months of misdiagnosis, Stephen was eventually told he had bowel cancer. He was 15. A straight-A student, he had always wanted to be a doctor. Now 18, he says: "I've lost faith in the healthcare system." He visited his GP numerous times with "crippling symptoms" and went to A&E on five occasions. "I have a strong family history of bowel cancer. At one point, we asked the doctor if I might have cancer and demanded further scans. He said: 'No, definitely not, you're too young.'"

Over the past three decades, cancer survival rates have increased dramatically. But for teenagers and those in their 20s, the outlook is less promising – several reports have shown that improvements in outcomes for them do not match those among children and older adults.

To investigate this, the National Institute for Health Research has launched Brightlight, a cohort study that hopes to become the largest ever of young cancer patients (aged 13-24). It intends to recruit more than 2,000 people by next April. In earlier studies, two of its leaders, Professor Jeremy Whelan, a specialist in teenage oncology at University College London Hospital, and Dr Lorna Fern of the National Cancer Research Institute, found that one of the critical factors for the "survival deficit" is delayed or mis-diagnosis. Invariably, this leads to a poorer prognosis as the more advanced the cancer is, the harder it is to treat.

According to a study published in the BMJ in October this year, those aged 16 to 25 are twice as likely as older adults to have three or more GP consultations before being referred to a specialist and a 2010 survey found more than a quarter of young cancer patients had visited their GP at least four times, many presenting with multiple "alert" symptoms (lumps, swellings or persistent unexplained pain) before their eventual referral. More than a third of participants at this year's Teenage Cancer Trust (TCT) conference (the aptly named Find Your Sense of Tumour) were only diagnosed on emergency. Among many young patients there is overwhelming resentment of GPs; a sense that they were not taken seriously, their symptoms dismissed as adolescent fatigue, stress, or persistent hangovers.

It is true that cancer is rare among young people. But it is also the leading medical cause of non-accidental death among them – and the TCT says that in the past 30 years, cancer among teens and young adults has risen by 50%; for the first time, teenage cancer cases outnumber those of children. Young people are also known to contract the most aggressive forms, exacerbated by their growth spurts. Failure to detect the warning signs at an early stage can have devastating consequences, as Stephen's case shows; his cancer was recently diagnosed as incurable. Raising awareness, he says, is essential to dispel the myth that young people are immune – a situation not helped by NHS campaigns such as Be Clear on Cancer, which feature only older faces.

Greater awareness is also needed to enable GPs to spot the "alarm-bell" symptoms. Since younger patients tend to develop the rarer forms of cancer – leukaemias, lymphomas, sarcomas, germ-cell tumours and cancers of the central nervous system – there is an urgent need for more research to group the specific symptoms of these malignancies.

At the moment, teens and young adults are also seriously under-represented in clinical trials. In a 2008 study, Whelan and Fern found almost half of patients aged 10-14 participated in a trial, but this fell to 25.2% for 15 to 19-year-olds, and just 13.1% for those aged 20-24. For too long, they argue, clinical and research communities have failed to recognise teens and young adults as a distinct category with unique biologies, and they have been left "forgotten in the middle".

It is the same story when it comes to hospital care; teens and young adults have been identified as a "lost tribe", caught between paediatric services and those designed for older patients. The National Cancer Reform Strategy (2007) estimated that 70% were not treated in age-appropriate settings; many were left on children's wards, with the disturbance of crying babies, or isolated in bays with elderly patients and surrounded by constant bereavement.

Those lucky enough to be treated alongside their peers at a young-person unit describe the experience as a godsend. "I was a total mess before I found Teenage Cancer Trust," says Jasmine Singh, 22, who is recovering from Hodgkin's lymphoma. She was transferred to a TCT unit with specialist young-person cancer nurses and counsellors, as well as a team of support workers offering education and career advice – a lifeline for young sufferers who fall behind with their studies or training.

In 2005, government directives recommended that all 13 to 24-year-old cancer patients be treated in such units – but at the moment there are only 27 in the UK, and only around half of all young patients are treated in one. The same recommendations stressed the importance of "age-appropriate care", but there is no real consensus over what this means. The Brightlight study sets out to provide some answers. By interviewing young adults over a five-year period, it aims to gain a clearer insight into the type of care that benefits them the most.

One of the study's pioneers was Stephen himself, in his capacity as a young adviser at the National Cancer Research Institute. "I don't know how long I have left because I haven't asked," he says. He refuses to waste a moment on self-pity – in between chemotherapy treatments, he is too busy fundraising for TCT, determined to improve the outlook for other young people with cancer.

• For more information on brightlight, email brightlight@uclh.nhs.uk