CLL What’s Next Archives

After cancer treatment ends, you will face a whole new world. Whether you are creating a survivorship plan or an end-of-life plan, nothing will be as it was before your CLL diagnosis. You will confront new fears, new opportunities to help others, and new social and physical situations.

Let us help you refocus your hope on where you are today and boldly face this new phase.

More resources for Chronic Lymphocytic Leukemia What’s Next from Patient Empowerment Network.

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

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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.

Grief, Loss, and the Cancer Experience

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“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen

Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it.  Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life. 

10 Ways to Cope With Cancer Grief

1. Acknowledge Your Feelings

Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.

2. Tune Into What You Are Feeling

It is helpful to get into the habit of checking in with your feelings.  Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body?  You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.

3. Write Down Your Feelings

If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud.   Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).

4. Take Care of Your Physical Health

Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.

5. Pay Attention to Grief Triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.

6. Go At Your Own Pace

There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible. Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through.  Grieving is not something that occurs once and then you are ok.  Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.

7. Learn To Adjust To Your New Normal

Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again.  The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.

Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.

8. Take Stock

Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day?  Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

9. Don’t Go It Alone

Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through.  Talking to a psycho-oncologist or counsellor can also help.

10. Recognize There Is No Right Way To Grieve

Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style.  Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel.  Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.

When Grief Doesn’t Go Away

We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense.  If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.   If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.

Grief can be a roller coaster full of ups and downs, highs and lows.  It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time.   We may be radically changed by the experience, but we find a way to continue to face the future.

Presentation Tips for Patient Advocates: Developing Effective Speaking Skills

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As a patient advocate you may be invited to speak in public about your cause, and while some of you will relish this opportunity, many others will find it daunting. According to the National Institute of Mental Health, 74% of people suffer from speech anxiety. Surveys show that the fear of public speaking ranks as one of the most common phobias among humans. There’s even a name for it – glossophobia – the fear of public speaking. Whether you are daunted or excited by the prospect of speaking in public it pays to have a plan in place to communicate effectively.  For a presentation to impact an audience and be memorable, you must structure the content, design the slides, and use public speaking techniques effectively. Next time you are asked to deliver a presentation, follow this step-by-step guide designed to help you become a more confident, prepared, and persuasive speaker.

STEP ONE: PREPARE YOUR TALK

Good presentation skills begin with thorough preparation. Here are seven tips to help you prepare for your next talk.

1. Decide what you want to say. What is the purpose of this talk? What do you want your audience to know, feel, or do after they have heard you speak? Your presentation should have a purpose, something that the audience walks away eager to do. Write down your core message in one or two clear sentences. Include a call-to-action (CTA) detailing exactly what should happen next. If you find that you have several messages you would like to deliver, challenge yourself to focus and simplify your message. Once you have a clear focus for your talk, you can then group your other ideas around it.

2. Know your audience. Who will be coming to your talk? Why are they coming to listen to you? What do they already know about the topic you will be speaking on? Find out as much as you can about your audience so you can better speak to their interests and in the language they are most familiar with.

3. Do your research. Do you want to present facts and figures in your talk? Are there any research studies you could incorporate to make your core message stronger? Use online tools like Symplur, the Journal of Internet Research (JMIR), and Google Scholar to help you with your research.

4. Structure your presentation. Now it’s time to put your key messages and research points together in a structured way. Having a structure is a helpful roadmap to keep you on track and to allow the audience to follow along with your points. Start with astrong opening, for instance, share some compelling statistics, outline a current problem, or share a memorable anecdote. If you feel comfortable sharing a personal story, this is one of the most effective ways to get your audience to pay attention. Stories leave a lasting impression on listeners. Patient advocate Martine Walmsley points to the importance of sharing your patient story because the story “behind the diagnosis is a side researchers and clinicians don’t usually see. Don’t assume they already know those details.” (Read Why Your Patient Story Matters for more tips on how to tell your patient story). Healthcare consumer representative and patient experience consultant Liat Watson advises patients to speak from the heart. “People want to connect with you and your story”, she says, “Share like you are sitting around the kitchen table”.

Next, organize your main points into an order that will make sense to your listeners. Reflect on your key points and how you might emphasise them.  Finally, determine the take-home lesson (CTA) you want to close with and how you will convey this to your audience. Your CTA should transmit a sense of urgency. Why is it important they hear your message and act now?  What will happen if they don’t act?

5. Add visual interest. If you decide to use slides in your presentation aim to create highly-visual slides with minimal text. Never cram information onto your slides. Instead, present one idea per slide so the audience can process each point fully before being presented with another idea. By presenting only one point at a time the information is easier to understand, and the audience is less likely to experience information overload.  Avoid excessive use of bullet points, not only do they contribute to the phenomenon known as Death by PowerPoint, but they are also proven to be an ineffective method of communication for presentations. Take care when choosing fonts for your presentation– how you present your text is an important factor in making your slides clear and compelling.  Type Genius is a useful tool to help you find the perfect font type and which fonts complement each other.

For a change from the usual PowerPoint presentation, consider using an alternative such as Keynote (for Mac) Prezi or Haiku Deck. Whichever tool you decide on, your slides should be visually engaging.  Make good use of diagrams and charts and find some compelling images to hold your audience’s attention. When choosing an image make sure it is high resolution so that it will still look pleasing to the eye when it is blown up to full-screen proportions. Don’t be tempted to use an image you have sourced from a Google search unless the image is licensed “Creative Commons”. Instead look for images on sites such as Foter, Pixabay, and Unsplash, all of which gives you access to a bank of high resolution free-to-use photos. As a general rule of thumb, stick to one image per slide – anything more than that simply looks too cluttered.  If you want to add text to a background image, choose a background with plenty of “whitespace” which will allow the text to be read clearly. If your image is lacking whitespace, try applying a blur effect or a gradient fill when you want to add text to your background.

6. Stand and deliver.  Rehearse out loud using whatever slides, notes, or props you plan to use during your talk. Don’t simply practise by sitting at your desk clicking through your slide-deck; stand and deliver your talk as if you are doing it in front of an audience. Work on your voice intonation and emphasis, flow and transitions, and practise controlling filler words, like “ems” and “ahs” (Toastmasters Internationalpoints out too many fillers can distract your audience). Crohn’s disease patient, Nigel Horwood, who has spoken to a large audience of nurses at Kings College Hospital, London, UK, recommends reading your talk out loud when you are practising. “I find that simply reading through what I have written doesn’t pick up the likes of over used words or even ones that are missing. Much better to hear it being read,” he has written in his blog Wrestling the Octopus.

Modulate your speaking voice to a lower pitch (if you can do so without sounding unnatural); the deeper the pitch of your voice, the more persuasive
and confident you sound. In “The 5 P’s of Powerful Speaking for a Memorable Speech”, professional speaker Pam Warren points out that “in public speaking clarity and tone are far more important than volume in that they imply authority, a certain gravitas and above all, confidence.” When speaking on certain points you may want to stress their importance, so practise the power of the pause – a slight pause before you’re about to say something important.  Take a printed copy of your text and make marks, such as a forward slash (/) or use color coding in your paragraphs to remind you to pause at key points in your talk.

The most important thing you should practise is the opening of your talk. Focus on conveying a strong, confident start which will set the stage for everything that follows.  Time your presentation using a stopwatch, or one of the many free countdown timers available online. After practicing a few times on your own, ask a friend to listen to you. If you don’t want to do this, video or audio record your presentation so you can play it back and see how you might improve on delivery.

7. Final preparations. Make sure you have a good night’s sleep the night before your talk and have your clothes freshly pressed and ready on hangars. Back up your presentation to a flash drive (or the cloud), pack a plentiful supply of business cards and handouts (if you are using them). Health consumer advocate Melissa Cadzow recommends making it easy for people to follow up with you after your talk, by having a dedicated business card for your patient advocacy work. She also recommends including information on your LinkedIn and Twitter profiles and providing an email address in your presentation slides.

 

STEP TWO: DELIVER YOUR TALK

It’s the day of your big presentation. Plan to arrive early so you can familiarise yourself with the room, meet the technical team, check your slides are working correctly, and practice using the microphone.

When you take to the stage, resist the urge to begin speaking straight away. Take a few moments to ground yourself – set your feet slightly apart, toes pointing towards the centre back of the room (this gives you balance and is the most secure and comfortable way to stand when talking).  Pull your shoulders back and down – this allows your chest to expand, so you have more breath when you begin to speak.  Make eye contact and smile at your audience which will help to relax you if you are feeling nervous.
When you begin to speak, do so slowly and clearly to give your audience time to absorb your words. Remember to take full breaths between sentences.

Dealing with presentation nerves: Feeling anxious or being nervous before a big presentation is normal. If you feel nervous, focus on the fact that your audience wants you to succeed. They are on your side. You were chosen to speak and you are the expert they have come to hear. There’s no need to tell them that you are feeling nervous – people probably won’t even notice if you don’t mention it.  Whenever you feel those first signs of nerves such as a racing heart, sweaty palms and shallow breathing, bring awareness to the physical sensations, take some deep breaths and anchor yourself by touching something physical, such as a table or the slide advancer, or push your weight into your toes and feet.  It’s perfectly natural to feel nervous, but try to focus your attention away from your nervousness and concentrate instead on what you want to say to your audience. Recognize that nerves are a signal that this is something that matters to you. Turn your nerves into enthusiasm and passion for your topic.

 

STEP THREE: AFTER YOUR TALK

Spend time after the presentation to reflect on how things went. Ask yourself (or others) what you thought went well and what could have been better? Take some notes on which techniques worked to help calm your nerves, which stories resonated with the audience, and how you answered any questions in the Q&A.  The purpose of this exercise is to become a better presenter the next time you are asked to give a talk, by putting the lessons you learn each time into practice. Take every opportunity you can to practise speaking in public. Not only is it an important way to get your message out into the world, but mastering the art of public speaking is a wonderful way to boost your personal and professional confidence.

Editor’s Note: For another creative presentation design tool, please check out Canva.