I have prostate cancer. But I am happy | George Monbiot

The three principles that define a good life will protect me from despair, says Guardian columnist George Monbiot

It came, as these things often do, like a gunshot on a quiet street: shocking and disorienting. In early December, my urine turned brown. The following day I felt feverish and found it hard to pee. I soon realised I had a urinary tract infection. It was unpleasant, but seemed to be no big deal. Now I know that it might havesavedmy life.

The doctor told me this infection was unusual in a man of my age, and hinted at an underlying condition. So I had a blood test, which revealed that my prostate-specific antigen (PSA) levels were off the scale. An MRI scan and a mortifying biopsy confirmed my suspicions. Prostate cancer: all the smart young men have itthisseason.

On Monday, I go into surgery. The prostate gland is buried deep in the body, so removing it is a major operation: there are six entry points and it takes four hours. The procedure will hack at the roots of my manhood. Because of the damage that will be caused to the surrounding nerves, theres a high risk of permanent erectile dysfunction. Because the urethra needs to be cut and reattached to the bladder, I will almost certainly suffer urinary incontinence for a few months, and possibly permanently. Because the removal of part of the urethra retracts the penis, it appears to shrink, at least until it can be stretched back into shape.

I was offered a choice: radical surgery or brachytherapy. This means implanting radioactive seeds in the parts of the prostate affected by cancer. Brachytherapy has fewer side effects, and recovery is much faster. But theres a catch. If it fails to eliminate the cancer, theres nothing more that can be done. This treatment sticks the prostate gland to the bowel and bladder, making surgery extremely difficult. Once youve had one dose of radiation, they wont give you another. I was told that the chances of brachytherapy working in my case were between 70 and 80%. The odds were worse, in other words, than playing Russian roulette (which, with one bullet in a six-chambered revolver, gives you 83%). Though I have a tendency to embrace risk, this was not an attractive option.

It would be easy to curse my luck and start to ask, Why me? I have never smoked and hardly drink; I have a ridiculously healthy diet and follow a severe fitness regime. Im 20 or 30 years younger than most of the men I see in the waiting rooms. In other words, I would have had a lower risk of prostate cancer only if I had been female. And yet I am happy. In fact, Im happier than I was before my diagnosis. How can this be?

The reason is that Ive sought to apply the three principles which, I believe, sit at the heart of a good life. The first is the most important: imagine how much worse it could be, rather than how much better.

When you are diagnosed with prostate cancer, your condition is ranked on the Gleason Score, which measures its level of aggression. Mine is graded at seven out of 10. But this doesnt tell me where I stand in general. I needed another index to assess the severity of my condition, so I invented one: the Shitstorm Scale. How does my situation compare to those of people I know, who contend with other medical problems or family tragedies? How does it compare to what might have been, had the cancer not been caught while it was still apparently confined to the prostate gland? How does it compare to innumerable other disasters that could have befallen me?

When I completed the exercise, I realised that this bad luck, far from being a cause of woe, is a reminder of how lucky I am. I have the love of my family and friends. I have the support of those with whom I work. I have the NHS. My Shitstorm Score is a mere two out of 10.

The tragedy of our times is that, rather than apply the most useful of English proverbs cheer up, it could be worse we are constantly induced to imagine how much better things could be. The rich lists and power lists with which the newspapers are filled, our wall-to-wall celebrity culture, the invidious billions spent on marketing and advertising, create an infrastructure of comparison that ensures we see ourselves as deprived of what others possess. It is a formula for misery.

The second principle is this: change what you can change, accept what you cant. This is not a formula for passivity Ive spent my working life trying to alter outcomes that might have seemed immovable to other people. The theme of my latest book is that political failure is, at heart, a failure of imagination. But sometimes we simply have to accept an obstacle as insuperable. Fatalism in these circumstances is protective. I accept that my lap is in the lap of the gods.

So I will not rage against the morbidity this surgery might cause. I wont find myself following Groucho Marx who, at the age of 81, magnificently lamented: Im going to Iowa to collect an award. Then Im appearing at Carnegie Hall, its sold out. Then Im sailing to France to pick up an honour from the French government. Id give it all up for one erection. And today theres Viagra.

The third principle is this: do not let fear rule your life. Fear hems us in, stops us from thinking clearly, and prevents us from either challenging oppression or engaging calmly with the impersonal fates. When I was told that this operation had an 80% chance of success, my first thought was thats roughly the same as one of my kayaking trips. And about twice as good as the chance of emerging from those investigations in West Papua and the Amazon.

There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Dont Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.

The super-volunteer Jeanne Chattoe, whom I interviewed recently for another column, reminded me that, just 25 years ago, breast cancer was a taboo subject. Thanks to the amazing advocacy of its victims, this is almost impossible to imagine today. Now we need to do the same for other cancers. Let there be no moreterriblesecrets.

So I have sought to discuss my prostate cancer as I would discuss any other issue. I make no apologies for subjecting you to the grisly details: the more familiar they become, the less horrifying. In doing so, I socialise my condition. Last month, I discussed the remarkable evidence suggesting that a caring community enhances recovery and reduces mortality. In talking about my cancer with family and friends, I feel the love that I know will get me through this. The old strategy of suffering in silence could not have been more misguided.

I had intended to use this column to urge men to get themselves tested. But since my diagnosis, weve discovered two things. The first is that prostate cancer has overtaken breast cancer to become the third biggest cancer killer in the UK. The second is that the standard assessment (the PSA blood test) is of limited use. As prostate cancer in its early stages is likely to produce no symptoms, its hard to see what men can do to protect themselves. That urinary tract infection was a remarkably lucky break.

Instead, I urge you to support the efforts led by Prostate Cancer UK to develop a better test. Breast cancer has attracted twice as much money and research as prostate cancer, not because (as the Daily Mail suggests) men are the victims of injustice, but because womens advocacy has been so effective. Campaigns such as Men United and the Movember Foundation have sought to bridge this gap, but theres a long way to go. Prostate cancer is discriminatory: for reasons unknown, black men are twice as likely to suffer it as white men. Finding better tests and treatments is a matter of both urgencyand equity.

I will ride this out. I will own this disease, but I wont be defined by it: I will not be prostrated by my prostate. I will be gone for a few weeks but when I return, I do solemnly swear I will still be the argumentative old git with whom you are familiar.

George Monbiot is a Guardian columnist

Prostate Cancer UK can be contacted on 0800 0748383

Read more: https://www.theguardian.com/commentisfree/2018/mar/13/prostate-cancer-happy-diagnosis-operation

Spread of breast cancer linked to compound in asparagus and other foods

Using drugs or diet to reduce levels of asparagine may benefit patients, say researchers

Spread of breast cancer linked to compound in asparagus and other foods

Using drugs or diet to reduce levels of asparagine may benefit patients, say researchers

Read more: https://www.theguardian.com/science/2018/feb/07/cutting-asparagus-could-prevent-spread-of-breast-cancer-study-shows

Warnings over shock dementia revelations from ancestry DNA tests

Companies have been told to accept moral responsibility and provide counselling for people who inadvertently discover health risks

People who use genetic tests to trace their ancestry only to discover that they are at risk of succumbing to an incurable illness are being left to suffer serious psychological problems. Dementia researchers say the problem is particularly acute for those found to be at risk of Alzheimers disease, which has no cure or effective treatment. Yet these people are stumbling upon their status inadvertently after trying to find their Viking, Asian or ancient Greek roots.

These tests have the potential to cause great distress, said Anna Middleton, head of society and ethics research at the Wellcome Genome Campus in Cambridge. Companies should make counselling available, before and after people take tests. The issue is raised in a paper by Middleton and others in the journal Future Medicine.

A similar warning was sounded by Louise Walker, research officer at the Alzheimers Society. Everyone has a right to know about their risk if they want to, but these companies have a moral responsibility to make sure people understand the meaning and consequences of this information. Anyone considering getting genetic test results should do so with their eyes open.

Alzheimers is linked to the build-up in the brain of clumps of a protein called amyloid. This triggers severe memory loss, confusion and disorientation. One gene, known as ApoE, affects this process and exists in three variants: E2, E3 and E4. Those possessing the last of these face an increased chance of getting the disease in late life.

About 3% of the population has two copies of the E4 variant one inherited from each parent, Professor John Hardy, of University College London, said. They have about an 80% chance of getting Alzheimers by the age of 80. The average person has a 10% risk.

The link with ApoE was made in 1996 and Hardy recalled the reaction in his laboratory. We went around testing ourselves to see which variant we possessed. I found I have two low-risk E3 versions on my genome. But if I had found two E4 versions? By now, having reached my 60s, I would be facing the prospect that I had a serious chance of getting Alzheimers disease in 10 years. I would be pretty fed up.

The ability to find a persons ApoE status has become even easier as a result of the development of genetic tests that provide information about a persons ancestry, health risks and general traits. Dozens of companies offer such services and adverts portray happy individuals learning about their roots 43% African or 51% Middle Eastern often to the sound of Julie Andrews singing Getting to Know You or a similarly happy-sounding track. All you have to do is provide a sample of spittle.

The resulting information about predilections to disease is not stressed but it is given. Kelly Boughtflower, from London, took a gene test with the company 23andMe because she wanted to prove her mothers family came from Spain. The results provided no evidence of her Iberian roots but revealed she carried one E4 version of the ApoE gene, which increases her chances of getting Alzheimers, though not as drastically as a double dose.

I didnt think about it at the time, said Boughtflower. Then, when I took up work as an Alzheimers Society support worker, I learned about ApoE4 and the information has come to sit very heavily with me. Did I inherit the ApoE4 from my mother? Is she going to get Alzheimers very soon? Have I passed it on to my daughter? I have tried to get counselling on the NHS but that is not available for a person in my particular predicament, I was told.

Other examples appear on the ApoE4 Info site, a forum for those whose gene tests show an Alzheimers susceptibility. Have stumbled upon my 4/4 ApoE status. Im still in shock, writes one. Another states: I got paid a $50 Amazon gift-card to take part in a genetic study. I was naive and unprepared.

There is no drug or treatment for Alzheimers and although doctors advise that having a healthy lifestyle will help, the baseline risk for E4 carriers remains high. That is a real problem, said Middleton. Genetic test companies say they offer advice about counselling but that usually turns out to be a YouTube video outlining your risks. Affected people needed one-to-one counselling.

For their part, gene test companies say results about Alzheimers and other such as breast cancer and Parkinsons are often hidden behind electronic locks. A person has to answer several questions to show they really want to open these and is informed of potential risks. But Middleton dismissed these precautions. You know there is medical information about you online and so you will go and find it. It is human nature.

Margaret McCartney, a GP and author of The Patient Paradox, agreed. What worries me is the aggressive way these tests are marketed. People are told all the benefits but there is no mention of the downsides. The NHS is expected to mop these up.

Meanwhile, the gene test company has made its profit and walks away from the mess they have created. I think that is immoral. They should be made to pay for counselling for their customers.

Read more: https://www.theguardian.com/science/2017/aug/26/alzheimers-disease-shock-for-genetic-ancestry-hunters

Laser-activated drug a ‘leap forward’ for prostate cancer treatment

New therapy does not cause side-effects such as impotence and urinary incontinence, researchers say

A drug activated by laser light successfully destroys early prostate cancer while avoiding side-effects that commonly occur with surgery, trial results have shown.

The new technique, called vascular-targeted photodynamic therapy (VTP), involves injecting a light-sensitive drug into the bloodstream. The drug is then switched on by laser pulses fired through optical fibres inserted into the prostate.

Of 196 men who received the treatment, about half showed no signs of the disease two years later, compared with 13.5% of those given standard care.

Because VTP targets only prostate tumours, it does not cause the long-term problems of impotence and urinary incontinence often associated with radical surgery or radiotherapy.

Lead investigator Professor Mark Emberton, consultant urologist at University College London hospital, said: These results are excellent news for men with early localised prostate cancer, offering a treatment that can kill cancer without removing or destroying the prostate.

This is truly a huge leap forward for prostate cancer treatment, which has previously lagged decades behind other solid cancers such as breast cancer.

In 1975, almost everyone with breast cancer was given a radical mastectomy, but since then treatments have steady improved and we now rarely need to remove the whole breast.

In prostate cancer, we are still commonly removing or irradiating the whole prostate, so the success of this new tissue-preserving treatment is welcome news indeed.

Currently, men with low-risk localised prostate cancer are put under active surveillance, which means monitoring the disease but providing no treatment unless it becomes more severe.

In the trial consisting of 413 men, participants were randomly assigned either to VTP or active surveillance.

Only 6% of the VTP group later needed radical treatment, compared with 30% of active surveillance patients. VTP treatment also doubled the average time of cancer progression from 14 months to 28 months.

The trial, reported in the Lancet Oncology journal, was conducted across 47 treatment sites in 10 European countries, most of which were performing VTP for the first time.

Emberton said: The fact that the treatment was performed so successfully by non-specialist centres in various health systems is really remarkable.

New procedures are generally associated with a learning curve, but the lack of complications in the trial suggests that the treatment protocol is safe, efficient and relatively easy to scale up.

We would also expect the treatment to be far more precise if we repeated it today, as technology has come a long way since the study began in 2011.

We can now pinpoint prostate cancers using MRI (magnetic resonance imaging) scans and targeted biopsies, allowing a much more targeted approach to diagnosis and treatment.

This means we could accurately identify men who would benefit from VTP and deliver treatment more precisely to the tumour.

With such an approach, we should be able to achieve a significantly higher remission rate than in the trial and send nearly all low-risk localised prostate cancers into remission.

We also hope that VTP will be effective against other types of cancer. The treatment was developed for prostate cancer because of the urgent need for new therapies, but it should be translatable to other solid cancers including breast and liver cancer.

The drug used, WST11, is derived from bacteria at the bottom of the ocean. To survive with very little sunlight, the bugs have evolved to convert light into energy with high efficiency. This property was exploited to develop the drug, a compound that releases destructive tumour-busting free radical molecules when activated by laser light.

Gerald, a man aged in his 60s from Surrey, was one of the first patients to be treated with VTP under the care of Emberton.

He said: The treatment … changed my life. Im now cancer-free with no side-effects and dont have to worry about needing surgery in future. I feel so lucky to be in this position.

Ive met other men who had surgery – they had to stay in hospital for days whereas I could go home the next day, and one suffered from terrible incontinence which he found very distressing.

I had some minor side-effects for a few weeks after the operation, but Im back to normal now.

Each year, more than 46,000 men in the UK are diagnosed with prostate cancer and 11,000 die from the disease.

Read more: https://www.theguardian.com/society/2016/dec/20/prostate-cancer-treatment-laser-activated-drug-a-leap-forward

Ellen DeGeneres: darling of both middle America and the coasts | Observer profile

Last weeks Medal of Freedom award to Americas favourite talkshow host is just reward for the bravery she showed in coming out on national TV and returning from near oblivion

One of the forces that helped propel Donald Trump to the White House was the belief, shared by many of his supporters, that America is run by a Washington elite that is promoted by spoilt Hollywood liberals. For those who hold to that viewpoint, the sight of President Obama awarding Medals of Freedom last week to a starry cast of A-list celebrities must have seemed like a full-blown invasion of their safe space.

Not only did the president pay tribute to such unreconstructed pinkos as Tom Hanks, Robert De Niro and Bruce Springsteen, he also made a moving speech celebrating the courage of the comedian Ellen DeGeneres that really should have come with a trigger warning for social conservatives.

It was Obama at his finest: full of emotional power, oratorical grace and leavening wit. At one stage, he joked about choking up. And with good cause, because he described a personal struggle that was so critical you had to remind yourself that he was talking about a daytime talkshow host.

But DeGeneres is not just any daytime talkshow host in the US. Its not only that shes hugely successful she is said to earn $75m a year, and has more than 63m Twitter followers, which is roughly the size of the UKs population. Of course, those numbers are impressive. But Obama wasnt waxing tearful about her ratings. No, what really sets her apart from all the other famous talkshow hosts who clog up American TV is that she played Americas first prime-time TV character to come out as gay and was, almost simultaneously, Americas first primetime TV star to come out as gay.

In April 1997, her eponymous sitcom Ellen featured an episode in which DeGeneress character, Ellen Morgan, came out to her therapist, played by Oprah Winfrey. And then, just to maintain the postmodern sense of fictional leakage, Degeneres herself came out on Oprahs show.

DeGeneres apparently decided to go public after dreaming of a caged bird that found there was space enough between the bars to get out. Jesus Christ, she said, do I have to have it spelled out? It was a decision that created huge news. Behind the scenes, there was a great deal of anxious debate. Ellens network ABC was owned by Disney, whose then CEO, Michael Eisner, was resistant. Although the character wore chinos and flannel shirts and steered well clear of men, Eisner clearly felt that middle Americas gaydar was not sufficiently developed to prepare it for the shocking revelation that Ellen was a lesbian.

But DeGeneres was determined, history was made and pink America celebrated with coming out parties. At first, everything seemed OK. The world did not explode. The tele-evangelist Jerry Falwell called DeGeneres Ellen DeGenerate, but then, as Christopher Hitchens once put it, he was so full of crap that if he had an enema youd be able to bury him in a matchbox.

Then advertisers started pulling out, ABC cut back on promotion, ratings fell and the following year the show was cancelled. For the next three years, DeGeneress career was stuck in reverse. She became the butt of jokes on TV and a laughing stock in the media. She was, she later said, really, really depressed. And then her girlfriend, the actress Anne Heche, left her and went off to the Californian desert, where she was found in her underwear, talking about extraterrestrials.

What she had intended to be a personal and professional liberation had left her afraid to go out in public and unemployed. Life outside the gilded cage suddenly looked grimly imprisoning.

What saved her from drowning in oblivion was an optimistic fish whose motto was just keep swimming. She landed the voice part of the determined but forgetful mother fish Dory, in the animated film Finding Nemo. She also hosted the 2001 Emmys, delayed after 9/11, telling the audience: I think its important for us to be here because they cant take away our creativity, our striving for excellence, our joy only network executives can do that, before going on to ask the rhetorical question: What would bug the Taliban more than seeing a gay woman in a suit surrounded by Jews?

There was also a short-lived sitcom, The Ellen Show, before she found her feet on a talkshow, The Ellen Degeneres Show.

Ellen DeGeneres interviewing Hillary Clinton on her show in May 2016. Photograph: Justin Sullivan/Getty Images

Plenty of celebrities get a bite at a talkshow, but usually the conversation doesnt last very long. When DeGeneres started in 2003, her rival start-up talkshow was hosted by Sharon Osbourne and was deemed to be doing better. But DeGeneres knuckled down and toured the country, reassuring nervous affiliate stations that she did not have a gay agenda.

It was the hardest show weve ever had to launch in the history of our company, said DeGeneress boss, Hilary McLoughlin, then president of the Warner Bros subsidiary Telepictures.

While late-night TV in America is the natural home for right-on liberals, daytime television is not the place to indulge in subversion. Its audience profile has a substantial overlap with Trump voters. DeGeneres was interested in alienating them. I think its important to recognise that mine is not a political show, she said. Im aware of what people are comfortable hearing about and knowing about. And I respect that. Ive learned my lesson.

And sure enough, there is nothing to frighten the horses and even less to concern the celebrities who appear on the show. DeGeneres doesnt do awkward questions. For all her quirkiness, she makes Alan Titchmarsh look like Jeremy Paxman. The show is a safe haven for anyone trailing bad publicity. Indeed, such is its clean image that she has faced down a boycott campaign from the anti-gay group One Million Moms and even regained advertisers such as JC Penney, which abandoned her after she came out.

Obama spoke of DeGeneress ability to bind people together and what was forgotten by fearful advertisers and affiliates is that the gay comedian knew her audience. She did not come from some bohemian quarter of New York. She was born and raised in Metairie, Louisiana, the child of Christian Scientist parents, one a speech therapist, the other an insurance agent.

Growing up, if she was ill or injured, her father would pray for her rather than seek or administer treatment. She says her comedy was born of appreciating the absurdity of her situation. But her life took a darker turn when her parents divorced, her mother remarried, got breast cancer and moved with DeGeneres and her new husband to Atlanta, Texas, where the stepfather began molesting the teenager. As she later recalled: I was trying to help my mother but he was abusing me, so it was a terrible time in my life But I think its what empowers me to speak out for women who stay silent.

She dropped out of the University of New Orleans after one term, took a series of a menial jobs and turned to standup. She started by performing at friends parties, doing a comic nerdy turn. Then she graduated to clubs and, after winning a talent competition, she was named, a little hyperbolically, the funniest person in America.

In 1986, she landed an appearance on Johnny Carsons Tonight Show. It was probably her religious upbringing that inspired her routine, about being on the phone to God. Carson was an instant fan, inviting to stay on for an on-screen chat after her set, which made her, incredibly, the first female comedian he interviewed. Thereafter, it was a steadily rapid climb upwards until the moment she came out. Its easy to forget now, said Obama, just how much courage was required for Ellen to come out on the most public of stages almost 20 years ago and just how important it was not just for the LGBT community, but for all of us.

He spoke eloquently of the social progress made in that time and DeGeneress not inconsequential part in hastening it along. We live now, as he noted, in an era of gay marriage and DeGeneres herself married her girlfriend, the actress Portia de Rossi, in 2008. Its hard to imagine Obamas successor ever speaking with such compassion, sensitivity and wisdom; DeGeneres was not alone in welling up as he placed the ribbon holding the Medal of Freedom over her shoulders.

But as DeGeneres knows from experience, progress is not a straight road. Sometimes it takes real commitment, as Obama said, to push in the direction of justice. DeGeneres has that. And a sense of humour too. Both will be required in the coming years.


Born 26 January 1958 in Metairie, Louisiana, the daughter of Betty, a speech therapist, and Elliott, an insurance agent. She has a brother who is a musician.

Best of times Last week must have scored pretty highly on the lifetime achievement meter. And the last decade, which includes her marriage, has been one long success story.

Worst of times Being molested as a teenager by her stepfather while her mother had breast cancer was undoubtedly her lowest point, but the three years in the wilderness following her decision to come out on TV was also a very bleak period.

What she says But when it really came down to it, you dont hear straight people saying, Nobody needs to know whether Im straight or not. The only reason you dont tell people is because you are ashamed of it. Shame stifles you, whether its your sexuality or something else.

What others say There are comedians who people laugh at but dont like. Thats not Ellen. When you see her, you like her and you want to laugh Jay Leno.

Read more: https://www.theguardian.com/tv-and-radio/2016/nov/27/ellen-degeneres-talkshow-host-medal-freedom-liberal-america-learned-love

Hillsborough victims posthumously awarded freedom of Liverpool

Families of the 96 who died in 1989 stadium tragedy are applauded at ceremony in city, which also honours manager Kenny Dalglish

The 96 victims of the Hillsborough disaster have received the freedom of the city of Liverpool in an emotional ceremony.

Families of those who lost their lives in Britains worst sporting tragedy on 15 April 1989 collected a specially designed scroll and a medal with the name of their loved one inscribed on it. It was the first time the city has posthumously awarded its highest civic honour.

Also receiving the freedom of the city from the lord mayor of Liverpool, Roz Gladden, at St Georges Hall were Prof Phil Scraton, who led the research by the Hillsborough Independent Panel, and the former Liverpool FC manager Kenny Dalglish and his wife, Marina.

As family members picked up their awards, they were greeted with rapturous applause, as were the Dalglishes, but the biggest cheer of the evening was reserved for Scraton, whose tireless campaigning since the tragedy eventually led to the fresh inquests into the deaths, the unlawful killing verdicts from a jury in Warrington and the continuing criminal investigation.

Margaret Aspinall, the chair of the Hillsborough Family Support Group, said she was delighted that Scraton had been honoured by his home city, while Trevor Hicks, whose daughters Sarah, 19, and Victoria, 15, died in the tragedy, said it was very deserving.

Left to right, Trevor Hicks, whose daughters Sarah and Victoria died in the tragedy; Margaret Aspinall, chair of the Hillsborough Family Support Group; and Kenny Dalglish, the Liverpool FC manager at the time of the disaster. Photograph: Richard Stonehouse/Getty Images

Before the service, Scraton said: On the one hand its a bittersweet experience. We should not be here, those people should never have died, so I cannot help but think that the most important part of tonight is the commemoration of those who died. But at the same time it is also a celebration a celebration of ordinary people who can pick up the mantle and fight for justice, and that they can win. To me that is a tremendous, tremendous indication to other families in other situations to never give up.

From my own point of view, I did a job. Im an academic, Im from Liverpool. I knew from the outset intuitively what I felt had happened at Hillsborough, and I worked on it. I felt I should never give up because I dont think you can commit to something like this just for a short time.

So once the inquests had ended the first time, once we had been through all the inquiries and investigations and we went into what I thought were the fallow years when nothing happened, I still felt it was important that the struggle for justice continued and that led invariably, inevitably, to the Hillsborough Independent Panel, and then from the panel to the inquests and now on to the next stage.

So all those things taken together is a vindication that we should always look for the depth, the understanding and knowledge around these dreadful awful situations but at the same time we should never back down in the face of authority.

Kenny and Marina Dalglish were recognised for their unstinting support given to the Hillsborough families over 27 years and for their substantial charity work. The couple have helped raise millions of pounds for cancer treatment in the city through the Marina Dalglish Appeal after she successfully battled breast cancer.

Kenny Dalglish, who was joined at the ceremony by his former team-mate Alan Hansen, said he felt very very humble to be honoured. He said: All we did is we went out, enjoyed ourselves, played football and won a few trophies. When Hillsborough came along we only did to the families of Hillsborough what they did for us and that was support us.

I think it is normal for people to help each other in their moment of need. If somebody wishes to reward you then, that is their choice. We did it because it was the right thing to do. Myself, the players, everybody involved at the football club, it was our responsibility to turn supporter and help them through the darkest days they had.

Read more: https://www.theguardian.com/uk-news/2016/sep/22/hillsborough-victims-posthumously-awarded-freedom-of-the-city-of-liverpool

Abbas Kiarostami death sparks debate on patient’s right to be informed in Iran

Iranian film-maker had undergone four operations but did not know severity of his illness until shortly before he died in Paris

The death of the legendary film-maker Abbas Kiarostami has sparked an intense debate in Iran over the right of patients to be told the truth about their illness after claims that the director did not know the severity of his condition until shortly before he died.

The Palme dOr winner underwent four operations in Iran before his death last week aged 76 but had resisted his familys attempts to transfer him to Paris for treatment until it was too late, relatives said.

The Iranian government has launched an official investigation into the death, and Ahmad Kiarostami, the directors son, said the family was planning a legal claim against the medical team.

There have been conflicting reports about the cause of Kiarostamis death, but family members say they were unable to make potentially life-saving decisions about treatment because they were kept in the dark about the nature of his illness.

We were in a dark tunnel and we were not supposed to be informed about what had happened, Kiarostamis other son, Bahman, told BBC Persian. He said the medical team had refused to give information either to the patient or his family.

Bahman Kiarostami said his father had been angry about this silence before his death. He recalled his father asking: What sort of secret is it that even the patient cannot be informed about it?

Bahman also said his father believed it was only in France that the family had been properly informed about his condition. In four months, this was the first time that a doctor was giving us information, Bahman said.

The complaint has touched a nerve in Iran, where patients are often not told about the severity of their medical condition. Dariush Mehrjui, an acclaimed Iranian director, lost his temper earlier this week at a tribute to Kiarostami, saying: Im angry over this accident that is the outcome of the carelessness and irresponsibility of the surgeons who killed Abbas Kiarostami.

According to Kiarostamis French doctor, his first operation was to remove bowel polyps, which an Iranian official had previously said was aimed at preventing the spread of cancer. His further surgeries were reportedly due to manage subsequent complications such as blood poisoning and infection (sepsis), arising from this operation, which, according to his family, were the cause of his death.

Maryam Behnam, a GP based in London who trained in Iran, said a patients authority and right to confidentiality, as well as their right to be kept informed, were widely violated in Iran. She said: Sometimes the patient is not told about the diagnosis, but his or her uncle or his or her neighbour might know.

Mania Akbari, a friend of Kiarostami who starred in his film Ten, said she had had a similar experience 10 years ago when she was diagnosed with breast cancer and was given a mastectomy without her knowledge. Akbari said: [After the first operation] I was still unconscious and they took me in again for a second operation without me knowing. When I woke up I was shocked to see my breasts had been removed.

The Iranian film director Asghar Farhadi speaks at a tribute for Kiarostami. Photograph: Atta Kenare/AFP/Getty Images

Dr Majid Hashemi, a senior bariatric surgeon in the UK, said that patients in Iran were not as empowered as they are here. He said: [In the UK] we are told that we have to involve the patient with any decision-making, [that] thats ethically the right thing to do. In Iran I found that that didnt happen.

Dr Pari-Naz Mohanna, a consultant plastic and reconstructive surgeon at St Thomas hospital, London, said withholding information from patients was not standard practice in Iran but that cultural factors meant family members sometimes had greater authority than patients.

She said: The family tends to have control, whereas in the UK the patient is always involved; nothing is carried out without the patients consent unless its an emergency.

In Iran, its a different situation; I wouldnt say its the same across the whole country, but with certain diseases, terminal diseases in particular, the families tend to prefer that the patient isnt informed, so that they arent distressed.

On Tuesday a group of 30 senior doctors, scholars and judicial officials met for five hours in Tehran to investigate Kiarostamis death. A deputy health minister told the semi-official Isna news agency that the findings would be released next week.

Irans ministry of health said this week that Kiarostami should not have gone to France. Overall, our medical team showed no negligence in his treatment, said a spokesperson, adding that the health minister had visited the patient six times, Isna reported.

On Sunday, Kiarostami was buried in northern Tehran after thousands gathered in the capital to pay tribute to a figure who was more celebrated abroad than at home. The Oscar-winning director Asghar Farhadi praised him for remaining loyal to his country and making its cinema global despite, he said, politicians putting barriers in his way.

First welcome, last farewell, read placards at the funeral, a reference to the fact that such huge crowds had never been allowed to gather for Kiarostami during his lifetime. A red carpet was rolled out at the airport for his body on its return from Paris the first time Kiarostami had officially been on one in his native land.

Since Kiarostamis death, an increasing number of people in Iran have urged authorities to treat the countrys artists with more dignity. Irans most famous traditional singer, Mohammad-Reza Shajarian, currently being treated for cancer, has not been allowed to perform in concerts in recent years, while the sculptor Parviz Tanavoli, 79, was recently barred from leaving the country and had his passport confiscated.

Kiarostami was famous for making films in praise of life, especially masterpieces such as Where Is the Friends Home?, about a schoolboy who wants to return his classmates notebook; and Close-Up, a docudrama about a man who pretends to be the Iranian film-maker Mohsen Makhmalbaf. Kiarostamis Taste of Cherry won the Palme dOr at Cannes in 1997. Before falling ill, he was involved in training in Cuba and had plans to make a film set in China.

You can learn from gamblers, Kiarostami said in his final days in an audio broadcast by BBC Persian. They say if youre on the losing side, better to change your seat and leave. Im doing just that, going to France.

Read more: https://www.theguardian.com/film/2016/jul/14/abbas-kiarostami-film-maker-death-sparks-debate-patient-right-be-informed-iran