Tag Archive for: cancer

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?

It seems whenever we hear a story about someone with cancer, war metaphors are never far behind. Cancer battles must invariably be bravely fought, won, or lost. Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers. As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.

By this reasoning, no amount of fighting or battling cancer can affect its outcome. Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”

Cancer is a disease; not a military campaign

Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.” Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will. You’ve got to be strong, remain positive and be courageous to overcome the disease. Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”

What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis. The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive. As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.

Cancer isn’t a game of winners and losers

I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché. Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”

Does this imply that patients in remission have somehow done more than those who aren’t in remission? Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy? “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”

Cancer shouldn’t be reduced in this way to a game of winners and losers. Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”

If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.

When words blame

Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”

The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”

The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too. In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”

Embracing a fighting spirit can work for some patients

This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control. Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.” Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”

Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”

I agree. I’m not criticizing individuals who draw strength from calling themselves fighters. Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.” Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”

Wrapping Up

If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”

Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.

Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”

Returning To Work After Cancer Treatment. Part 1: Preparing the Ground

This month’s article is the first in a three-part series which deals with common concerns on returning to work after a cancer diagnosis and offers practical solutions for helping with your re-entry into the workplace.

A diagnosis of cancer is a profound disruption in our lives, leaving no area untouched. Cancer impacts our family life, our relationships, and our careers.  If you have been absent from work, the decision to return often brings with it mixed emotions.  While you may welcome a return to normality, a steady income, the company of work colleagues and a sense of identity, you may also be feeling apprehensive about how you will cope.

Particularly if you are used to identifying closely with your job, a prolonged absence from work can be difficult. Even if you continue working during treatment, you may also experience some difficulties. You may be wondering how you will cope with your workload.  Will your co-workers treat you differently? How will your boss react to you? Will your promotional opportunities be affected?

Although the majority of those who return (or continue) to work after cancer adapt well, some will encounter difficulties. In Part 1 of this series, we will take a look at some practical ways to prepare for your re-integration back into the workplace.

When Do You Know It Is Time To Return To Work?

There is no one-size fits all answer to the question of when it’s time to return to work. It will depend on the type of treatment you received, your financial situation, your physical and emotional state and other personal factors.

Only you know whether it would be better for your psychological health to be at home, away from any professional stresses, or at work, where distractions may take your mind off other things.  Chris Lewis, founder of Chris’s Cancer Community, believes that “work can be a fantastic therapy, when dealing with life’s challenges. We feel valued, and of course, can provide an income for our family.”

On the other hand, perhaps you see cancer as an opportunity to re-evaluate your career. You may find that your work priorities have changed, or you feel unable to keep up with the demands of your previous work pace. Perhaps you want a new job which will allow you more flexibility to pursue other goals or you may want to explore working in a field which is more personally fulfilling (we will look at this in more detail in Part 3).

Preparing the Ground

Doing some groundwork before you return to work should help make re-entry more manageable.  Plan in advance how you will respond to questions from co-workers, deal with your boss’s expectations, and handle your workload. Here are some tips to help you.

1. Making adjustments and accommodations to your work environment

Your employer has a duty to make ‘reasonable adjustments’ to your workplace and working practices. What is considered a ‘reasonable adjustment’ depends on factors such as the cost and practicality of making the adjustment, which is why it’s important to discuss things as soon as possible with your employer.    Some things to discuss include the possibility (at least temporarily) of a phased or gradual return to work, job-sharing, working from home or flexi –time.

A word of caution here. It is not unusual for part-time work to turn into a full time job. Set clear boundaries about what is achievable in the hours you have agreed to work.  If you are thinking about working from home, be aware that this can be quite isolating. Will you miss the camaraderie of the office?

Breast cancer blogger @lifeafterlola suggests that “A phased return is good, combining time back at work with work from home or a day off on, say, a Wednesday to break up the fatigue. The hardest thing to cope with,” she says,  is getting back up to pace with early mornings, late finishes and travel on top of work and social adjustment.” Julia, co-founder of breast cancer Twitter chat, #BCCWW offers a practical tip to reduce the stress of traveling to work.  “If it’s possible travel outside rush hour,” she advises.

Next, think about your physical environment at work. Revisit you work-station. Does it need to be redesigned or fitted with equipment such as back support or other devices to make you more comfortable?

The size of your company may affect how much accommodation to your needs you can expect to get. Larger organizations are in a better position to offer you more flexibility and support, but most employers will be understanding if you communicate your needs clearly with them. It may be helpful to have a letter from your doctor to document any accommodations required.

2. Getting up to speed with changes at work

Depending on how long you have been absent, you may find things have moved on since you were away from work. If this is the case, take some time to get up to speed with new systems and developments. This may include attending formal training sessions in advance of getting back to work, or having a colleague take some time to get you caught up again.  Julia explains how she struggled initially with her job which “involved reading lots of draft legislation, policy papers, etc.” and after speaking to her boss, did some refresher training to get up to speed again.

3. Updating your co-workers on your plans to return to work

Most of us have built up a carefully constructed professional persona and we work hard at protecting it by keeping a fairly strict line of demarcation between our personal and professional lives. It can be unsettling to find these lines have become blurred by your illness.

Not everyone knows the right thing to say or how best to offer support. Connecting with colleagues before you return to work can, in the words of Julia, “get a little of the first day nerves out of the way, especially  if you are feeling anxious about their reactions to your changed appearance.”

In general people will take their cue from you, so take the lead with colleagues. Talk them on the phone, send an email or arrange to meet for coffee or lunch. Reassure them that you are doing ok and that you still want to be a valued member of the team.  Decide in advance how much you are comfortable sharing.  If you are a naturally open person, then you can talk frankly with your work colleagues, letting them know what they can do to help you ease back into work. If you are more private, just tell everyone that you appreciate their asking, you are doing ok now and you are looking forward to getting back to normal.

4. Communicating with your manager

Most managers and bosses will support your transition back to work, but they may be unsure of how best to handle this. As Kate Bowles points out in this post: “The particular challenge of having oncology patients (which is what we still are) as staff under your management, as colleagues and as workplace friends, leaves everyone falling back on adhoc interpersonal skills.”

It can be difficult for managers and colleagues to know how to strike the right balance between giving you extra support and allowing you to carry on as normal.  As Julia points out “Your line manager isn’t a mind reader. Be honest about what you can/can’t do, offer solutions, about managing work and don’t just leave it to them.  It should be a two way process.”

For your part, you may have concerns about being perceived as a productive member of the team.  Open and honest communication is key here. Check in regularly with updates on how you are coping and to review your productivity.   If there are things that you are not ready to undertake initially, then be honest, and ask for help if you need it. Set clear boundaries that will allow you to say no to certain types of requests, such as staying late for non-essential projects.    “Learn to say I can’t ….YET,” advises Siobhan Freeney, founder of Being Dense, an organization which raises awareness of Breast Density and its associated links to breast cancer and screening.

A note on work discrimination. Legally, your cancer history can’t be used against you in the workplace. But it can be difficult to determine this, because discrimination can be subtle.   Know your rights. Look into whether you are protected by the federal Americans with Disabilities Act or your state’s Fair Employment Law.

5. Book a counseling session

If you are worried about how you will cope on your return to work, consider booking some sessions with a counsellor or cognitive behavioral therapist to build up your confidence and coping skills.  Some employers have an employee assistance program in place which allows you to speak in confidence to a trained professional about your concerns. Ask if this is available in your company.

Learning some stress management techniques in advance of your return will also help you cope better (we’ll look at this in more detail in Part 2).

6. Stock your freezer

When we’re tired, we tend to gravitate towards processed food which depletes our energy reserves further. Siobhan suggests you “stock up handy home cooked freezer meals in advance of returning to work to avoid being tempted to skip dinner when over-tired.”

The key to managing the stress of working after a cancer diagnosis is to prepare as much in advance of your return to the work place. Be prepared to be flexible in your planning approach. Cancer recovery is an ongoing process. There will be many ups and downs.  You may have to deal with late side-effects of treatment or side-effects related to medication. Be ready to adjust your work practices if and when you need to.

Next month, I will share more tips and practical advice on handling your work load, managing your time and dealing with issues such as fatigue and concentration once you return to work. Until then, if you have any tips to share with readers about how you prepared your own return to work, please share them in the comments below.