Deepest fears: some form of cancer will affect one in three of us, yet it is not always lethal.
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Why it's time to ditch the word "cancer"

A former president of the Association of Surgeons of Great Britain and Ireland argues that the word “cancer” is unhelpful in efforts to lead patients away from quacks.

It is more than 12 years since the writer and broadcaster John Diamond wrote his cancer diary, recording all that happened to him from diagnosis to near-end. Starting as a sceptic, with a distrust of conventional medicine and its practitioners, he went on to explore the various complementary and alternative systems and concluded with his book Snake Oil and Other Preoccupations, a skilful and often very funny exposé of those who exploit vulnerable people by offering false hope.

There have been a number of accounts in the press, notably by Philip Gould, Christopher Hitchens, Iain Banks and others, who have undergone physical and mental ordeals in receiving treatment for a terminal illness. Perhaps the most poignant message came from the poet and translator James Michie, who wrote, just before he died, I used to fancy crabmeat as a treat: Now Crab’s the epicure, and I’m the meat.

These courageous and articulate people deserve our sympathy and respect but their experiences are not typical. While suffering and death are newsworthy, the stories of the thousands who are quietly cured never reach the headlines.

At this point, I should declare my credentials. During a lifetime’s work as a surgeon in the NHS, I treated many people with cancer in various parts of the body. About 30 years ago, mid-career, I was found to have a malignant tumour; my chances of surviving for five years were less than one in 20. Following chemotherapy, radiotherapy and eventually major surgery, I made a good recovery and am lucky to be able to write these words today. The experience taught me a lot and profoundly influenced my attitude to those of my patients with similar problems.

Then, many years later, I noticed a small lump beside my nose which I recognised as a basal cell carcinoma: a tumour that, left untreated, would have spread and destroyed my whole face. A colleague removed it under local anaesthetic and I have had no trouble since. In a letter to the Times in April 2011, I suggested that the practice of including these two conditions under the same emotive label of cancer (“the Crab”) was misleading and should be abandoned.

We now know a great deal about the causation and behaviour of cancer, far more than when I started my career in medicine. From the moment of conception when the sperm meets the egg, the embryo undergoes trillions of cell divisions, controlled by the code of its inherited DNA, eventually resulting in the birth of a complete human being with unique characteristics. Growth continues into adult life but is necessarily regulated and balanced by a process known as “apoptosis”, which involves cell death. Normal cells have a limited lifespan and when they have outlived their usefulness they are knocked out. Cancer cells are different, in that they are not subject to apoptosis and, having escaped from super­vision – either through a gene mutation or as a result of damage to the DNA by an aggressive chemical such as is found in tobacco smoke – they continue to multiply.

This process can be replicated in the laboratory. If you take a small sample of cells from your mouth and put them in a Petri dish with warm water and nutrients, they will continue to divide quite happily until one day you find that they have all died. In 1951, an African-American woman called Henrietta Lacks developed a growth on the cervix of her uterus. Cells cultured from her tumour did not die and, as far as I know, are dividing to this day in laboratories all over the world, providing us with a priceless means of studying the behaviour of cancerous tissues.

As cancer cells multiply in a human body, they form an expanding tumour, which compresses and damages neighbouring structures. Eventually, some of them may break off into the circulation and form colonies (metastases) in other parts of the body. 

The extent to which this happens defines the degree of malignancy of the tumour. 

Relatively benign lesions such as the one on my nose remain in the same place, whereas the one that I’d developed many years previously had the capacity to kill me, had it not been for the excellent treatment that I received from the NHS.

Today, not only do we understand how these diseases progress but we also have better means of combating them, whether by surgery, or radiotherapy, or drugs that block cell division. As a result, many tumours that were considered lethal in my day are now susceptible to treatment, if not curable. These include some forms of childhood leukaemia, Hodgkin’s lymphoma and the testicular cancer known as seminoma. We are making good progress with breast and bowel cancer and, to a lesser extent, with growths in the lungs and stomach.

Cancer is not a diagnosis. It is a label – and a misleading one at that, given the wide range of conditions that it covers. People labelled as cancer victims constitute a target group for hard-nosed entrepreneurs. An internet search for alternative cancer treatments leads to a huge range of products that are advertised as “natural ways in which to attack and kill your cancer”.

Note the use of the word “kill”, rather than “cure”. Most of these preparations do not claim to cure cancer because (in this country, at any rate) such a boast would be illegal. 

The terms “gentle”, “natural” and “without harmful chemicals or side effects” occur frequently. These advertisements are principally aimed at the terminally ill and those who have been told by their doctor that there is nothing more to be done.

These desperate people are the ones most likely to pay for alternative therapies and it is interesting to note that though there is plenty of advice on dosage (start with three bottles a day and increase as necessary, for example), there is no mention of price. The ugly little dollar sign appears only once an order has been placed.

Dr Stanislaw Burzynski of Houston, Texas, attracts desperate people from all over the world to his multimillion-dollar cancer clinic. His methods employ a group of substances that he identified and named “antineoplastons”, which are concocted from a mixture of amino acids found in urine. Some people have experienced a remission, albeit temporary, and their cases are backed up by enthusiastic endorsements from grateful relatives. However, although there have been many requests for a controlled trial, none has ever been conducted in a form acceptable to mainstream scientists and it is impossible to know how often these treatments result in failure.

Neighbouring clinics in Houston spend much time and money in caring for Bur­zynski’s former patients before they finally expire. Although his methods have been repeatedly criticised in the scientific literature, there seems to be no means of stopping him pursuing these questionable activities. He would be a comical figure – a kind of Donald Duck with a stethoscope – except that the life events in which he trades are pain, tragedy and bereavement.

We need to demystify the problem. Cancer is ordinary; it is normal; it affects all of us indirectly and one in three of us will get it. To treat it as a sort of fairy-tale giant to be fought and conquered is to fuel unnecessary fear. The journalist Matt Ridley wrote in the Times in June: “Cancer fights hard. We must be bold to beat it.” Yet what we need is not boldness but patient, objective, scientific study, building theories on the known facts, testing them and rejecting those that do not work.

According to members of the US National Cancer Institute, writing in the Journal of the American Medical Association this summer, the term cancer “invokes the spectre of an inexorably lethal process; however, cancers are heterogeneous and can follow multiple paths, not all of which progress to metastases and death, and include indolent disease that causes no harm during the patient’s lifetime”. The group urges that the word be used to describe only “lesions with a reasonable likelihood of lethal progression if left untreated”; pre-malignant conditions should not be labelled as cancers or neoplasia, nor should the word “cancer” feature in the condition’s name, it argued.

We badly need a new expression to replace an obsolete and misleading term. I suggest “dDNA” (damaged DNA), which, after all, does reflect what is going on. When people ask their doctor the question, “Have I or have I not got cancer?” they expect a straight answer, but the question is not straight.

A response might be: “We don’t use that word any more. What we do say is that you have a dDNA problem, which includes all sorts of tumours, some of them very dangerous and others much less so. In your case, we need to do further tests and investigations, at the end of which we will be able to get together and form a plan of action to put you right.”

Adrian Marston is a former president of the Association of Surgeons of Great Britain and Ireland. He published his first article for the New Statesman, on Portuguese politics, as a 20-year-old medical student in 1948. This is his second article.

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“The guards WANT you to mess up”: meet the prison wives of Instagram

How memes featuring Disney Princesses, Spongebob Squarepants, and saggy jeans have empowered women with incarcerated partners.

During a recent trip to visit her boyfriend in federal prison, 27-year-old Makenzie wore a floor-length black skirt and a grey shirt that completely covered the top half of her body. After a brief inspection, the guard on duty deemed her outfit appropriate and waved her through, and she was able to spend a happy eight hours with her incarcerated boyfriend and her six-year-old daughter. The next day, she came back to visit again.

“I wore the exact same outfit the second day of visitation because I didn’t want to fight with the guards about any other clothing,” says Makenzie, who had to drive five hours out of her home state, Texas, in order to visit her partner. “I was sent away by a guard who had seen me the day before.”

Makenzie felt “belittled and humiliated” by the guard, who forced her to go to the nearest shop to buy a new shirt. “I wore the exact same outfit down to my shoes and earrings,” she explains. When she confronted the guard, Makenzie says he said: “I honestly don’t care.

“All I’m telling you today is you’re not going in there dressed like that.”

Being a “prison wife” can be isolating and confusing. When wives and girlfriends first go to visit their newly-incarcerated partners, the rules and regulations can be overwhelming. When visiting her boyfriend, Makenzie has to place her money in a clear plastic bag, go through a metal detector before a smaller metal detector is used on her feet, and be patted down by guards. If her clothing is too loose or too tight, she is sent home.

“The guards WANT you to mess up,” Makenzie tells me over email, emphasis hers. “They want to make you mad, make you get in trouble.” For wives and girlfriends isolated by these experiences, the internet has become a haven.

***

Makenzie’s Instagram account has 1,123 followers. Under the handle “Texas Prison Wives”, she has been posting memes, photographs, and advice posts for five years. After incidents like the one above, Makenzie can use her account to vent or warn other wives about changes in clothing rules. Followers can also submit text posts to her that she screenshots, overlays on scenic pictures, and publishes anonymously.

One, imposed on a city skyline, asks if anyone wants to carpool to a prison. Another, overlaying a picture of a nude woman, reads: “I’m wondering if I can get some ideas on sexy pics I can take for my man. I’m about 85lbs heavier than I was the last time he saw me naked.”

The prison wives of Instagram recently went viral – but not on their own posts. A Twitter user discovered the community and tweeted out screenshots of prison wife memes – which are formatted with an image and caption like all relatable memes, with the crucial difference being that not many of us can actually relate.

“The life that we live is not widely accepted by families, friends, and the general outside world because people hear ‘inmate’ and automatically assume the worst,” says Makenzie, whose boyfriend was sentenced to two fifteen year sentences for drug possession.

“This account has given women a safe space and anonymity to seek personal advice, ask questions, and seek other women within their area if they want to reach out.” Her account, Makenzie says, also allows prison wives to laugh during tough times. She both makes her own memes and shares those from similar accounts. One, from May 2016, features a collage of four celebrities rolling their eyes. The caption reads: “When you hear ‘Babe, we are going on lock down again…’”

To outside eyes, some prison wife memes can seem flippant or – to those who retweeted the viral tweet – laughable. “My Life As A Prison Wife” is an account with over 12,000 followers that posts a wide array of memes, often using stills from Disney movies to portray emotions. A post featuring an image of a crying Belle – from Beauty and the Beast –  is captioned “that feeling when… when your visits get suspended”. Yet though many online criticise what they see as the glorification or normalisation of a life choice they don’t agree with, Makenzie emphasises that memes – especially funny ones – are important.

“I think it’s fun to have so many people relate to funny memes even though the direct meaning behind it is about being lonely or the hard things we go through to make this relationship work,” she explains. “It’s a reminder we aren’t alone in our struggle and we can laugh through the pain.”

Jemma, a 22-year-old from London who runs an account called “Doing time too”, concurs. Her profile – which has 1,369 followers – showcases memes featuring puppies, Disney princesses, and stills from Spongebob Squarepants.“I'm sure ordinary members of the public would disagree with our light-hearted way of looking at our loved ones being in prison and I would totally understand that,” she says – also over email.

 

HAPPY VALENTINE'S DAY LADIES  #prisonwife #prisonwifelife #doingtimetoo #inmatelove

A post shared by doing time too (@doingtimetoo) on

“Before I was in the situation myself, I would have probably reacted in the same way to an account like the one I now own. But sometimes you end up in situations you never expected to and you deal with things in a way that others won’t understand.”

***

Prison wives don’t use Instagram just for memes. Makenzie’s account helps women in need in an array of ways: they can find out if there have been riots in their partner’s prison; get advice on gifts to send a loved one; and even find out how to appeal sentences. Alongside her Instagram, Jemma also runs a website called www.doingtimetoo.co.uk

Via @TexasPrisonWives

“I started the website because I was in a relationship with someone a couple of years ago who ended up going to prison. It was totally out of the blue for me and something neither of us saw coming,” she says. “I had no idea how to deal with it.” Her site provides information about individual prisons, what to expect from a prison visit, and what to do after release. She also provides tips on how to send creative gifts made out of paper to incarcerated loved ones.

“I believe the internet has been a massive help in supporting prison wives,” says Jemma, who finds most people don’t understand or relate to her situation. Her boyfriend was charged with GBH (grievous bodily harm) and sentenced to two years in prison, after getting into a fight.

Jemma also feels that Instagram can provide prison wives with information that the prisons themselves withhold. “I can't speak for everyone but in my experience, prisons and the visit centres are far from helpful in providing any information, support or advice,” she says. “Sometimes people won’t hear from their husband when they expect to but through interacting with other ‘prison wives’ they may find out that that particular prison is currently on lock down, providing an explanation and reassurance as to why they hadn’t heard from their husband. Without the internet, this wouldn't happen.”

 

Advice! @mothafukn.irvin

A post shared by OFFICIAL N. CALI SUPPORT (@north_cali_prisonwives) on

When Jemma reached out to prison visitor centres in the UK to promote her website to those in need, she never heard back. When she emailed her boyfriend’s visitor centre prior to her first visit to ask what to do, what to wear, and what to expect, she also never received a reply. “There is no communication with family and no support offered… It’s important to remember that the families themselves did nothing wrong or illegal and so don’t deserved to be punished or treated like criminals themselves.” In such circumstances, information shared online is crucial.

Makenzie also believes that the US prison system has it faults when it comes to visitors. “While I know and understand that inmates are being punished for a crime they committed, the guards treat their families disrespectfully and unfairly almost as if we are being punished as well,” she says. “Being a larger woman, I have gotten in trouble for my clothes being too tight AND for my clothes being too loose. It’s a lose-lose situation.”

Makenzie explains that sometimes visitors are forced to wear gowns similar to those worn in hospitals if their clothes are deemed unsuitable. In the past, she has even been sent away to buy a new bra after she wore one without underwire in order to get through the metal detector. In one prison her boyfriend was incarcerated in, visitors had to wait outside to be signed in, one-by-one, regardless of the weather. “We had to wait two hours several times, sweating, drenched in rain, they don’t care…

“The guards degrade your loved ones right in front of your face, they are mean, hateful, and over the top rude, even to the inmates who are the most well behaved and respectful.”

For these women, Instagram has become an invaluable network of support.

***

There are hundreds of Instagram accounts just like Jemma and Makenzie’s. Many often take memes from each other, but Jemma explains there is no competition. In fact, she says, the network is incredibly supportive. “I spoke to one lady regularly about her situation and I remember counting down to her boyfriend’s release date with her,” she says. Jemma and Makenzie also use their accounts to help lonely prisoners find pen pals.

Instagram allows prison wives to find likeminded people, free from judgement. Yet the accounts can also be incredibly informative to outsiders. By using the “When…” format, memes provide a detailed insight into the lives of prison wives. “When you’re kissing baby towards the beginning/end of the visit and the CO yells ‘enough’,” reads one. “When you check your phone and see… not only did you miss 1 call, you missed two,” is the caption on an image of a crying child.

 

A post shared by doing time too (@doingtimetoo) on

“Nobody understands this long distance, no physical intimacy, and then the added stresses of dealing with prison politics, corrupt guards, and the worry of riots, lock downs, and retaliation like women who are living through the same thing,” says Makenzie. Yet thanks to these Instagram accounts, outsiders do have an opportunity to understand.

For prison wives, memes are an easy and fast way to talk about a topic that many deem taboo. The fact that Jemma and Makenzie wished to communicate with me over email, and the fact many more prison wives didn’t want to speak to me at all, shows how difficult it can be to talk about these issues. For many, memes are just a bit of fun. For prison wives, they can be a lifeline.

 

A post shared by doing time too (@doingtimetoo) on

 “None of us enjoy prison visits or being treated like we are criminals ourselves. We don't enjoy waiting for phone calls that never arrive or having to deal with situations all on our own but if we can laugh about it, that’s something,” explains Jemma.

“Memes allow us all to laugh at the situations we are in, rather than cry.”

Amelia Tait is a technology and digital culture writer at the New Statesman.