Patient Advocacy: 21 Tools To Help You Achieve More With Social Media

Recently I had the pleasure of taking part in an Ask Me Anything #patientchat about social media (If you missed it you can catch the transcript here). I had forgotten how fast-paced a Twitter chat can be and given that social media is such a huge topic, inevitably I didn’t get to cover everything in that one hour.

One thing I really wanted to share but didn’t get a chance to go into in great detail is how useful it is to have some go-to tools to help you do more with social media. So I’ve put together this list of my own favorite social media apps. Whether you want to edit an image, create custom graphics or schedule your social media posts, there’s a tool here to suit your needs. Best of all, each of the tools listed are free so you can try them out before deciding if you want to upgrade to a paid tool or feature.

1. Adobe Spark

A free suite of apps which allow both web and mobile users to create and share visual content such as posts for social media, graphics, web stories, and animated videos. https://spark.adobe.com

2. Anchor

Anchor is an audio recording app for micro-podcasting, audio broadcasting, Q&As, and more. Features like sound clips and transcriptions make it simple to create audio for social media. Billed as “the easiest way to make a podcast, ever,” it lets you record a high-quality podcast, and distribute it everywhere (including Apple Podcasts) — all in one place. No fancy equipment or podcasting experience necessary, and it’s 100% free!

https://anchor.fm

3. BeFunky

There is so much you can do with this tool to enhance your visual marketing assets, including creating collages, adding “one-click” photo effects (there are over 300 photo effects and filters to choose from) and an array of graphics (eg speech bubbles). The basic account is free to use and provides users with access to a library of 125 digital effects. https://www.befunky.com

4. Biteable

A desktop video creation tool. You can choose from a selection of pre-designed templates or you can build your video from scratch yourself. Biteable hosts a large collection of video clips and images (many of these clips are included with the free plan) to add to your templates. It also provides simple animation and claymation sequences to help you produce engaging explainer videos in just a few hours. Biteable’s free plan allows you to create five projects per month and publish HD-quality video to YouTube and Facebook. https://biteable.com

5. Buffer

Buffer is my go-to tool for scheduling my social media updates and with the Chrome extension, you can schedule content easily while browsing. It lets you design specific posting patterns and schedules to optimize your online presence. It’s free to post up to ten updates to one social channel only per day— to post more updates to more channels and to access analytics you will need to upgrade to a paid plan. https://buffer.com

6. Canva

Whether you want a Twitter post or Facebook profile picture, you can create them quickly using Canva’s drag and drop editor. Select from a number of pre-set designs, or create something from scratch. You can also add elements such as custom icons, fonts, charts, animations and illustrations. https://www.canva.com

7. Easil

Easil is a simple, browser-based system with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories. https://about.easil.com

8. Hemingway Editor

A proofreading tool which clears your text of all unnecessary copy. Just paste your text into the editor and you’ll get an analysis that highlights lengthy, complex sentences, adverbs, passive voice, and common errors. https://hemingwayapp.com

9. Infogram

Infogram is an infographic and data visualization tool. The Basic (free) plan is intended only for non-commercial use, such as personal projects, blogs and presentations, within the limits of fair use. It includes 37 chart templates and allows users to generate up to 10 three-page projects based on their data. https://infogram.com

10. Life of Pix

Life of Pix offers free, high-quality images that are available for personal and commercial use. Each comes with a helpful color palette so you can plan your visuals accordingly. https://www.lifeofpix.com

11. Lumen5

This is a cool tool that enables you to turn your blog posts into slideshow-type videos in minutes. The free plan includes unlimited videos, access to 10 million video files, and 480p-quality video with the Lumen5 watermark. You can also upload your own logo. Upgrading to the Pro plan ($49/month) lets you remove the Lumen5 branding, upload your own watermark and outro, and more. https://lumen5.com

12. Pexels

Pexels provides over 3,800 high-resolution photos, collated from other free image sites — making it one of the largest free image directories. Pexels has also added a large library of stock videos to its site also under the creative commons license. Use the site’s list of popular searches to find the most in-demand stock video. https://www.pexels.com

13. Pocket

I use Pocket to batch my reading of online articles. Whenever I find something interesting I save it to Pocket to read when I have more time to focus. You can also share interesting articles directly to Twitter and Facebook or schedule it to Buffer. I like the daily recommended reading list which always brings something new and interesting into my inbox. https://getpocket.com

14. Quotes Cover

Quotes Cover turns quotes or short text into images for social media and high resolution images for posters or other print design. It’s so simple to use. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color. https://quotescover.com

15. RiteTag

This is a useful Chrome extension which gives you instant feedback on your hashtag choices as you type them. It checks the hashtags you begin typing in real time and color codes them according to which hashtag will get the most engagement for you. https://ritetag.com

16. Ripl

A mobile app that lets you create short animated videos with professionally designed templates. Ripl is integrated with the major social media platforms, so sharing your final video is easy. Once you’ve connected your social profiles to Ripl, you can post directly to Facebook, Facebook groups, YouTube, LinkedIn, and more. You can export your videos if you want to use them outside of your social media platforms. https://www.ripl.com

17. Scoop.it

A super content curation platform that allows you to easily find and share unique, relevant content to your social networks, website or blog. The free version will allow you to monitor a single topic and use the content generated on up to two social media accounts https://www.scoop.it

18. Twitonomy

This tool provides detailed visual analytics on keywords and hashtags, top related hashtags and more. You can use it to export tweets to Excel, track clicks on the links in your tweets, and track the evolution of a particular hashtag over time.

http://www.twitonomy.com

19. Unsplash

Unsplash gives you access to a bank of 50,000+ free-to-use photos. All photos are licensed under Creative Commons Zero, which means you can copy, modify, distribute and use the photos for free, including commercial purposes, without asking permission from or providing attribution to the photographer or Unsplash. https://unsplash.com

20. Veed

Say goodbye to clunky video software and hello to one-click editing online.

With Veed, you can create and edit amazing videos, add subtitles, animations, audio and more. It works on your Windows or Mac computer, no software download or plugin required.

https://www.veed.io

21. WordSwag

A mobile application that turns your ideas, quotes, and content into attractive graphics that can be shared on social media.

http://wordswag.co

 

I feel sure you will find some tools in the list above to help you get more creative with social media and achieve more online.

Here’s to your social media success!

Nourishing Your Body and Mind: Nutritional Advice For Cancer Survivors

There are few things more confusing to those of us who have had a cancer diagnosis than dietary advice. From conflicting recommendations from well-meaning friends to advice in magazine articles and online blogs, we can easily become overwhelmed with mixed messages.

To bring more clarity to bear on the topic I spoke with registered dietitian Cathy Leman, who is also a survivor of ER/PR+ breast cancer. In this interview Cathy separates dietary fact from fiction and offers some evidence-based tips for eating a nutritionally balanced diet which nourishes body and mind.

Q: One of the most confusing things, particularly for patients who have hormonally driven cancer, is conflicting advice about consuming phytoestrogen foods (such as soy products). What is the latest scientific evidence on this often perplexing subject?

A: This is a topic where it’s critical to know the facts! There are four main classes of phytoestrogens, of which isoflavones, the phytoestrogen found in soy, is one. Within these classes there are analogs (relating to) and derivatives (derived from). It’s common to consider the term phytoestrogen as “one thing”, as well as view the impact of eating phytoestrogen foods to be the same for everyone.

Phytoestrogen means “plant estrogen” (phyto = plant). Plant estrogens are similar to, but not the same thing as the human estrogen we produce in our bodies, called “endogenous estrogen” (endogenous = produced from within). Research on phytoestrogens and hormone-receptor positive breast cancer is ongoing, yet current data generally supports the safety of eating phytoestrogen foods for the general population, women with benign breast disorders, those at risk, and even in survivors of breast cancer.

Scientific literature reports both benefits and risks, yet the unfavorable effects have been mainly suggested based on data from in vitro, animal or epidemiological studies. Clinical studies often report the absence of unfavorable effects.

Another consideration is that the metabolism of phytoestrogens is highly variable among individuals. Differences in gut microflora, use of antimicrobials, intestinal transit time and genetic variation all play a role.

Take home message: further studies are needed, we don’t yet have conclusive results, there are no recommendations to exclude phytoestrogen foods from the diet.

Q: We hear a lot of talk about adding nutritional supplements to our diet. Are these a good idea?

A: Food first! That’s my professional philosophy, and the science supports. There is room for supplementation, yet not just for the sake of supplementing. Diet is the star, supplements, as their name suggests, take the supportive role.

Q: Do you have any tips for cancer patients who are currently in treatment and may lack motivation to cook healthy meals because of taste changes, nausea or fatigue?

A: My expertise is in working with post-treatment survivors, so I always suggest cancer patients seek the guidance of an oncology dietitian for targeted advice to manage these side effects.

Q: Cancer doesn’t just affect our bodies, our emotional and mental health can also suffer too. What’s the role of diet in improving our overall well-being?

A: When we eat well, it helps us feel we’re doing what we can to be well, and it’s empowering to know you’re taking charge of your health. Also, when one improves their diet, other healthy habits tend to follow, such as getting regular physical activity, prioritizing sleep and managing stress. Also, our bodies and minds require certain nutrients for repair and to aid in transport and storage of the building blocks necessary for overall good health.

Q: For those of us diagnosed with breast cancer we run a real risk of treatment induced osteoporosis (loss of bone density). What advice can you offer us to minimize the impact of treatment on our bone health?

A: There’s much to consider with regard to osteoporosis risk. For example, dietary pattern, exercise type and frequency, calcium absorption rates, minerals and other compounds that impact absorption, and genetic risk factors (that’s not an exhaustive list!). I recommend working with a dietitian to asses individual risk and develop a plan to address any areas of deficiency.

Q: Finally Cathy, for readers who may feel overwhelmed by the prospect of overhauling our diet, what’s the one thing we can do right away that can start to move us in the right direction?

A: Abandon the idea of overhauling your diet. Instead, consider making small, incremental, sustainable habit changes over time.


About Cathy Leman

Cathy Leman helps survivors of hormone-positive breast cancer rebuild trust with food and their body, end food fear, confusion, and overwhelm, eat without stress and guilt, and gain peace of mind and confidence about nutrition, exercise and well-being, so they can rebuild their health after treatment.

Cathy is a registered dietitian, nutrition therapist and coach, personal trainer, speaker, and a survivor of hormone-positive breast cancer. Learn more Cathy and REBUILD, her private coaching program here: www.cathyleman.com

12 Actionable Tips For Social Media Success in 2021

2020! What a year it was for all of us.  In the advocacy world, we saw an unprecedented shift towards online activities.  We relied on zoom calls, webinars and social networks to keep us connected and informed.  Where many organizations and individuals may in the past have used social media as an add-on to in person events, this past year saw the virtual world take centre stage, and with it the need for a stronger social media presence.

I spent the latter half of 2020 teaching social media skills to more patient organizations than I have at any other time in the past decade. The realization that mastering social media has become an essential advocacy tool was brought home to us more than ever this year.

With hope on the horizon that vaccination may bring us closer to something resembling normality again, it is yet unclear how long it will take before the old way of doing things resumes. It is predicted that for 2021 at least we will still be relying heavily on online activities in the advocacy world.

To help you strengthen your online presence and create more visibility for your cause in the new year, I’ve put together this list of 12 actionable tips you can put into practice over the coming months. By following these monthly prompts I predict that come this time next year, you will be able to look back with satisfaction on all you’ve achieved over the previous 12 months.

January

Set SMART Social Media Goals

Get your 2021 social media activities off to a flying start by setting some SMART social media goals for your online activities.

Goals are the forerunner to success. Ask yourself what you would most like to achieve with social media this year, and then set specific and actionable goals to achieve it. For a goal to become a reality it needs to be specific, measurable, attainable, and realistic, as well as time specific. These are often called SMART goals.

February

Conduct a Social Media Audit

Take some time this month to audit your social media activities. A social media audit is a great way to take stock of where you’re at and identify what you can improve on going forward.

Start by creating a simple spreadsheet and list all your social accounts, including those you set up but haven’t used in a while.  Audit how often you are posting on each platform and list which times you are posting and the results you are getting. How engaged is your audience with you on each of your social networks?  It’s a good idea to benchmark where your social activities are at so that when it comes to the end of the year you can look back and see what has worked for you.

Some further things to audit:

  • Have you fully completed your About sections on each network?
  • Are your biographical details up to date?
  • Do you need to include a new call-to-action?
  • Do your cover photos needed updating? Are you still showing that summer picture now that it’s winter?

Want to dive deeper? Download my step-by-step guide to conducting a social media audit at http://bit.ly/3pvjVa5

March

Perform a Content Audit

Look back at your ten most recent pieces of content — blogs, images, videos, etc. Which content worked best for you in terms of engagement (i.e. comments, shares, etc.)? Can you do more with this content?  For example, can you highlight some key statistics and share on social media in a more visual format?  For more ideas on repurposing content visit http://bit.ly/3rEZwBl.

What about the content you spent a lot of time creating which didn’t generate significant engagement? Ask yourself (or even better ask a friend)  if it’s immediately clear what message you are trying to convey.  Can you rework this content to make it more compelling – updating any outdated information, adding new research, refreshing images, etc.

April

Conquer Content Curation

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman (@BRCAResponder) believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Want to learn more? Go to http://bit.ly/2WSGIAv for my ten golden rules of content curation.

May

Develop an e-Newsletter

This month, consider developing an online newsletter. With the popularity of social media, you may think e-newsletters outdated, but nothing could be further from the truth.   While you can go for a few days without checking social media, most people check their email several times a day. E-newsletters can help you build relationships and credibility and keep your activities to the forefront of people’s minds.

If you blog, use an e-newsletter to send a digest of your most recent blog posts. “I would advise anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones,” recommends breast cancer blogger Nancy Stordahl (@nancyspoint).  “I also share a couple of articles that have been in the news, or that I think might be of interest to my subscribers,” says Nancy.  “Sometimes I share something personal and I often bounce around ideas. I love my subscribers and always value their input!”

Even if you don’t blog, you can still keep your subscribers updated with the latest research and news from the advocacy world by sending a regular e-newsletter. You can also share links to these newsletters on your social media channels.

June

Create Visual Impact

This month is all about getting creative with your visual assets. Visual content is 40x more likely to get shared on social media than other types of content according to research. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Check out my guide to creating professional looking graphics at https://bit.ly/3mYMzPe

Related: Patient Advocacy: 10 Ways To Create Share Worthy Content For Social Media

July

Build Your Authority on LinkedIn

Your LinkedIn profile is the cornerstone of your professional brand online. It’s so much more than a place to park your resume.

Take some time to identify how top patient advocates are using LinkedIn to build their thought leadership on the platform. You’ll find they are showing up consistently, publishing thought-provoking commentary and original think pieces and generating high levels of engagement with industry leaders.  The wonderful thing about LinkedIn, as with all social media, is the ability to show up on a level playing field. The same opportunities to build online visibility are open to all – so take full advantage of this by doing more with your LinkedIn profile this month.

Start by optimizing your Linkedin profile at http://bit.ly/2wTorK3

August

Tap Into The Power of SlideShare

Many of us who do speaking engagements have built up our own library of slide-decks over the years. This month dust off those decks and upload them to SlideShare.

SlideShare is the world’s largest professional content sharing community. Surprisingly, given how the platform is optimized for social sharing, including the ability to embed presentations, it’s often overlooked and underused. And because it’s owned by LinkedIn, it’s super easy to highlight your uploads on LinkedIn’s platform – giving your thought leadership a further boost.

Take time to create visually impactful slides – even if this means re-doing some of your original slides.

Boring slides don’t get many views. Make sure to optimize for mobile viewers with big, bold visuals and text that is readable on mobile devices. New to SlideShare? Check out these tips: http://bit.ly/2XcrsyN

September

Increase Facebook Reach

Despite privacy concerns, Facebook still reigns supreme in the advocacy world. However there’s a problem when it comes to making an impact on Facebook. When organic Facebook Reach (i.e. the number of people who see your content without paid distribution) is estimated to currently be as low as 1–3%, succeeding on the platform is more difficult than ever.  Take time this month to consider ways to increase your organic reach and boost engagement on Facebook.

Facebook recommends each post you create should include some type of creative, like images, GIFs or videos. Make sure these creative assets are high quality. Avoid using blurry images or videos or creative that doesn’t accurately reflect your message.

For more tips on increasing Facebook reach, go to http://bit.ly/3pydfIk

October

Get Creative with Instagram

When it comes to consistent engagement, Instagram (now owned by Facebook) is the number one social channel out there. Recent studies have found the engagement rate on Instagram Is 45% greater than on Facebook.  Instagram is the perfect platform to let your creativity run free and, in fact, even have some fun in the process.

If you’re new to Instagram there is a lot to learn. Check out my SlideShare deck to help you get started: http://bit.ly/3rDBKph

November

Become a Twitterholic

Twitter is a powerful tool to help raise awareness of your cause, keep current with research, amplify your advocacy activities, and build collaborative relationships. Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following.

Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern.

Many people tell me they “don’t get” Twitter, but I would encourage you to give it a try. You don’t even have to tweet to take part – you can learn a lot from following the right people and listening.

December

Evaluate Your Progress

It’s the end of your social media year. Time to look back and evaluate how far you’ve come over the previous 12 months.

Some key metrics to track are the number of followers you attract and retain, which social media channels drive the most traffic to your website, the number of comments you get, and how many times your updates have been shared. Most social media platforms have their own basic measurement and analytics tools, which you can use to gain information about views and engagement. Take note of what’s working for you – do more of this – and consider dropping things that aren’t generating much engagement.

Here’s to your social media success!

9 Tips to Help You Build a Better Advocacy Blog

Do you blog about your illness?

Many patients find blogging about their condition is not only therapeutic, but is also a great way to connect with others going through similar experiences. 

A blog can also be a powerful advocacy tool – a way to raise awareness, build community and show commitment and passion for the work you do.

This month, I’d like to share 9 ways to help you build a better blog. If you’re new to blogging, these tips will help steer you in the right direction. If you’re a seasoned blogger, why not use this as an opportunity to take stock to see if you’re still on track to make an impact with your blog.

1.Perfect Your About Page

For new visitors to your blog, this will be one of the first pages they will visit, so it’s worth taking time to make it as professional as possible. Use this space to share the story of why you do what you do to advocate for disease awareness and educate and support your community.

2. Check Your Blog’s Load Speed

Does your blog load quickly? A good site will load in 2 seconds. If your blog is taking longer than that, consider that around 40% of people will leave a site if it doesn’t load in 3 seconds. You can check your blog’s loading speed with a tool like GTMetrix.com.

Insider Tip: If you like to add lots of images to your blog, be aware that large images can slow your blog down. Resizing your images can speed up the loading time. Upload your image to Picresize.com for quick and easy resizing.

3. Declutter Your Sidebar

Does your blog have a sidebar? Has it become crowded with widgets? Then it’s time to declutter Marie Kondo style. Get rid of anything that doesn’t add something valuable to the reader’s experience.

4. Showcase Popular Content

One thing that you should keep on your sidebar is a list of your most popular content. Use this space to showcase your best writing. And be sure to put hyperlinks in each of your posts that direct people to other popular posts on the same topic.

5. Make It Easy For Readers to Find Information on Your Site

Providing helpful information is great, but you also need to be sure that readers can find that information. By adding categories and tags to your posts, you make it easy for readers to find the information they need when they come to your blog. It also increases views on your other posts tagged with the same keywords.

6. Create An Email Sign-Up Form

Encourage readers to sign up to receive your latest posts. Nancy Stordahl, who blogs at NancysPoint.com, advises “anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones. “I became very frustrated with Facebook’s algorithms because it seemed no one was seeing posts I shared. Having your own email list puts you and your readers in control.”

7. Add Social Sharing Buttons

By making it easy for visitors to your blog to share your content, you increase the likelihood that they will take this action. When more people share your content, you increase the chance of driving more visitors to your blog, and having your content seen by more people.

8. Choose Typography Carefully

Typography is made up of elements such as font type and size, kerning (white space between individual characters or letters), and tracking and spacing. It’s an important factor in making your content more readable for visitors to your site.

9. Backup Your Blog

Finally, you’ve put a lot of effort and time into your blog and you don’t want to risk losing all your great content. You never know when your blog might get hacked, and the best defense is scheduling regular backups using a plug-in like BackWPup.

Happy Blogging!

Breast Cancer Awareness Month and Its Many Shades of Pink (and Blue)

We are more than half-way through Breast Cancer Awareness Month (BCAM) – impossible to miss given the pink ribbon avalanche that arrives each Fall. While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.” 

“BCAM is a 2-sided coin in our community,” states Jean Rowe, Director of Support and Provider Engagement at The Young Survival Coalition. On the one hand, she explains, celebrating successful treatment outcomes and raising awareness is important, but “on the other side, expectations that come with the pink ribbon in October can be overwhelming, isolating, infuriating and bewildering.” 

The pink ribbon, so long a symbol of breast cancer awareness and support, has become for many a symbol of what’s missing from the BCAM narrative.  When I first pinned a pink ribbon on myself,  I was newly diagnosed with breast cancer. Back then, I felt that wearing a ribbon was a symbol of solidarity, and I wore it proudly. Looking back, I now see that my view of breast cancer was one-dimensional. Standing today on the other side of cancer I see a broader picture, a richer landscape of many shades beyond pink.

A Whiter Shade of Breast Cancer

For Siobhan Freeney breast cancer is not pink. “When I see pink I’m reminded of all things feminine, “ she says. “My delayed breast cancer diagnosis resulted in a mastectomy. There’s nothing feminine or pink about that. I see breast cancer as the elusive ‘snowball in a snowstorm’ because my breast cancer, all seven centimeters of it, was missed on consecutive mammogram screenings. I know now that I had extremely dense breasts, this caused a masking effect – white on white.”

Breast Cancer Shaded Blue

Much of the criticism of BCAM centers on breast cancer campaigns which over-sexualize the disease, equating breasts with womanhood and femininity. Rod Ritchie, who was diagnosed with breast cancer in 2014, points out that “October is a bad time for male breast cancer survivors because the trivialization and sexualization of the disease by the pink charities reinforces public awareness that breast cancer is gender specific.  Since there’s little attempt to educate men that they need to be aware of symptoms too, we are diagnosed later and have a poorer prognosis.” 

Ritchie suggests “adding some blue to the pink, encouraging research on us, and screening those with a genetic propensity. Reminding the community that this is a genderless disease will give us a chance to receive an early diagnosis and therefore a better prognosis. We deserve equality.”

Metastatic Breast Cancer: The Other Side of BCAM

Learning about metastatic breast cancer (MBC, also called stage 4, secondary breast cancer (SBC) or advanced breast cancer) from online blogs and social media networks was revelatory for me. As Lisa de Ferrari points out, “although breast cancer has been commercialized and is often presented in a way that seems to minimize the seriousness of the disease, the reality is that deaths from this disease remain extremely high.”

MBC has been referred to as a story half-told, the other side of BCAM we don’t hear enough about. “Every Breast Cancer Awareness Month the huge focus is on awareness of primary disease. There has been little focus on secondary breast cancer and the only day for awareness is 13th October,“ points out Jo Taylor. “Awareness of SBC needs to be across the whole month.”

Nancy Stordahl is unequivocal in her criticism of the failure each October to adequately raise awareness of MBC. “Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer,” she writes. “No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.”

How To Honor All Sides of the BCAM Coin

This article is not meant in any way as a criticism of those for whom wearing a pink ribbon is  meaningful. I  am grateful that the original pink ribbon movement has brought breast cancer out of the dark ages when it was taboo to even mention the words “breast cancer” aloud.  However, time has moved on, and it is time to challenge the singular narrative of breast cancer as a female only disease wrapped up prettily in a pink ribbon. 

So to quote, Gayle A. Sulik, a medical sociologist, and author of Pink Ribbon Blues,  “this is not a condemnation of anyone who finds meaning in the ribbon or public events. It is a call to broaden the discussion, re-orient the cause toward prevention and life-saving research, and acknowledge the unintended consequences of commercialization, festive awareness activities, and the lack of evidence-based information that makes its way to the public.”

It’s important to honor your feelings and emotions at this time. If you want to celebrate BCAM, celebrate; if you want to sit out this month or use it as an opportunity to educate others in a different way, then do that. In the words of Rowe, “Everyone gets to experience BCAM the way in which they need and want to.”

However, I will add to this that whichever way you choose to honor this month, be more questioning. As MBC patient advocate Abigail Johnston says, “ask if the pink ribbon represents the community you are trying to reach before using it automatically. Be open to understanding that not everyone identifies with the same images and concepts.”

Perhaps consider wearing the more inclusive green and teal ribbon designed by METAvivor. To highlight the uniqueness of the disease and show its commonality with other stage 4 cancers, METAvivor designed a base ribbon of green and teal to represent metastasis. “Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast.”

Also use this month as an opportunity to broaden your understanding of breast cancer awareness. In the words of Terri Coutee, founder of DiepCFoundation,  “Without the metastatic community, I cannot understand, learn, or appreciate their experience of living with breast cancer. The men in the breast cancer space who are living with or have been treated with this disease have amplified their voices over the years to level the breast cancer awareness campaign to let us all know, breast cancer does not discriminate.”

Above all, don’t let breast cancer awareness in all its many shades be for one month alone. “When I began my advocacy, I hopped on the October bandwagon to bring awareness to a disease that has affected me, my own family, and dear friends too often, “ says Terri. “ Now, I look at it as only one month out of a year we need to bring awareness to latest studies in oncology, clinical trials, surgical best practices, emotional recovery, support, all mixed in with a bit of gratitude for the friends I’ve made along the way and to mourn those I have lost.”

Patient Empowerment Revisited: Part 2

Welcome back to the second part of this discussion on patient empowerment. In Part 1 we looked at self-advocacy and the importance of having access to information which allows us to take a more active role in our care. We also looked at how a team-based, partnership approach to care – one in which the patient is respected as a person – facilitates a more empowering environment. 

In Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use. Finally, we’ll conclude with some thoughts on the need for systemic change and a shared vision to embed new solutions into healthcare systems and pathways.

Theme 5. Peer to peer empowerment

“Engagement with your community, bolsters our confidence with good information.” – Britt (@mewhinney). 

Information, knowledge and the confidence to become a more active participant in our care also develops from engagement with other patients.  As Conor describes it, “I find being part of patient groups empowering for so many things, including where to find information, other peoples experiences and above all, chatting with others who just understand.” 

Piarella Peralta de Wesseling (@piarellaperalta), Patient Advocacy Lead at Diaceutics, is unequivocal in her belief in the collective wisdom and power of patient communities. “It is not clinicians nor industry nor government who have empowered me as greatly as the community of empowered individuals themselves,” she says. “No one has greater urgency to get it right, to evaluate and decide what best fits our lives than us facing the very challenges of the disease. People come to me and my fellow patient advocates to ask very simple questions that in the end just have two purposes, feeling heard, share in the knowledge of the devastating news that they have learned they have cancer, be in solidarity and then to know how they can make the best decisions relevant to them.”

Theme 6. Is ‘empowerment’ the right term to use?

When crowdsourcing these comments, I received some push-back on the use of the term ‘empowerment.’  To quote Piarella, the term itself “creates a sense of power differential and that is perhaps intuitively contradictory to the notion that each human has a right to be autonomous and self-determined.”

Kristie Konsoer (@kkbadger1) agrees. “For me, empowerment means taking action/speaking up so I feel like I’m participating in and influencing my health care,” she explains. “I empower myself. Empowerment comes from within. An authority can’t give it to me, but we can work together toward the same goals.”

Here are some more quotes expressing similar viewpoints. 

“For what it’s worth I think patient empowerment is lacking. It implies patients need authority given to them by another. Patient rights seem more fitting. Patients have rights, and doctors and healthcare providers must ensure those are not infringed but are guaranteed.” Mark Samber (@MarkMyWords67).

“I cringe at the term! Despite its well-meaning origins, it’s a conversation stopper within our hierarchy of medicine.” – Carolyn Thomas (@heartsisters).

“Empowerment is a convenient shorthand that smacks of condescension, as if someone is deigning to award me some of their power when I presumably have little or none. How about respecting patients and taking our input seriously. We can strengthen our own power by exercising it.” – Nancy Seibel (@nancylseibel).

“Like everything, thoughts on this evolve. #Patientsinvolved means patients can be as passive or pro-active as they like, but it also means they are heard and asked about their thoughts and needs. Empowerment perhaps is self-empowerment. Not that patients are ‘given power’?” Sharon Thompson (@sharontwriter).

“I think patients like to ‘feel’ empowered, because the word connotes being engaged, participatory and pro-active. At the same time it can be overused, although when people say they’re empowered by ‘xyz’, there’s ‘power’ in that.” – Cathy Leman (@dammadbrstcancr).

“Patient empowerment is a concept I believe in, but as a patient activist, I find the term somewhat passive. I’m also concerned that power is not something men diagnosed with breast cancer feel they have. Faced with a labyrinth of medical institutions and pink charities geared towards dealing with this predominantly female disease, those of us in the one percent cohort feel virtually powerless.” – Rod Ritchie (@malefitness).

“Not a big fan of the term because what exactly does it even mean? Empowered vs powerless, or what? Also, what empowers each of us varies so much as we are all unique. It’s another trendy buzz word. But if it works for some, that’s fine too.” – Nancy Stordahl (@nancyspoint).

“I use the word ‘empower’ in my mission statement but only believe it is worthy of a mission statement or used anytime when ACTION is taken. A word is empty without the tools/resources to use it.” – Terri Coutee (@6state).

Theme 7. Empowerment requires a systemic approach

The final theme centered around the need for a systemic shift in how patients are treated in the healthcare system.  As Julia (@bccww) put it, “empowerment would be health care services being appropriately funded and accessible to enable those with serious/long term chronic conditions to live well. It’s about being enabled (for me) to manage my long term health conditions, live well with them but with access to support and/or treatment (if I need it) to keep on course.”

Elizabeth Nade (@elizabethnade11), who prefers the term “patient activism”, points out, “I am already empowered. I am seeking change to the current healthcare model because it is insensitive and unresponsive to the needs of patients and their families. I want to challenge the relationship to affect change.”

Similarly, Patty Spears (@paspeers88), emphasises the need for systemic change. “I don’t like the term and how it’s usually used. Even unempowered patients need good quality care, not just empowered patients.  Rather let’s ensure equal and high quality care for ALL patients. Putting the burden on the patient (to be empowered) is a bad idea in my book.”

Cardiologist, David Lee Scher MD (@dlschermd), adds the physician voice to the discussion. “Education, awareness and tools are what is needed for patients to self-manage chronic diseases and navigate the healthcare system,” he says. “What you call it doesn’t matter. Labels and phrases (engagement, etc) in healthcare have yet to translate to better care.”

A Shared Vision

To conclude this discussion, I’m turning to Liz Ashall Payne (LizAshallPayne), CEO and Co-Founder @OrchaHealth, a passionate advocate for healthcare  transformation through digital and mhealth.  I  really like what she has to say about working together on a shared vision that puts the patient at the center of the entire healthcare ecosystem. 

“To truly support ‘patient empowerment’ we have to think far broader than the patient, we must also make sure we are empowering those that sit around the patient. 

We need to empower Health Care systems to be incentivised to support this vital work.

We must educate and empower our health care workforce to know how to empower patients 

We must support innovators to know what patients’ needs are, and how to embed new solutions into healthcare systems and pathways.

Above all we must COLLABORATE with a shared vision. 

The current COVID crisis has really brought the whole system together to drive digital uptake amongst our patients and populations, but we are not finished, we must do more, and there has never been a better time to do so.”

Patient Empowerment Revisited: What Does It Truly Mean To Patients?

Language is constantly evolving in our everyday lives. This is also true of the language we use to describe patienthood. The words we use color how we view our world and how the world perceives us as patients. 

‘Empowerment’ is one of those words frequently attached to patients.  The term is most often used to emphasize the value of having patients assert greater control over their health care.

In a previous post, I set out to explore what it means to be an empowered patient from the perspective of patients themselves. I outlined seven essential facilitators of patient empowerment, from access to information, to health and digital literacy.  Now, two years later, I want to revisit the theme of patient empowerment to investigate what, if anything, has changed in the interim. 

Is patient empowerment still a concept that resonates with patients? 

Reaching out to my online network of patient advocates I received an overwhelming response to this question.  The following quotes, which I’ve synthesised around the most common themes, demonstrate a rich source of insight. Some of the responses you may find surprising as they offer a new perspective on the evolving nature of what it is to be a patient in today’s connected world. Others I feel sure will resonate. Take some time to reflect on what it means to you to be engaged, empowered and enabled in your own care and that of your loved ones. As always feel free to share your thoughts on this topic with the wider community via PEN’s social media channels. 

7 Themes Related To Patient Empowerment

  1. Agency, self advocacy and control
  2. Information, choices and shared decision making
  3. Partnership and a team based approach to patient care
  4. Respect, understanding and compassion
  5. Peer to peer empowerment
  6. Is ‘empowerment’ the right term to use?
  7. Empowerment requires a systemic approach

As there is so much to cover across this topic I’ve split the discussion into two parts. In this first part we will look at Themes 1 – 4. 

Theme 1. Agency, self advocacy and control

On your health journey, care is the vehicle – why not take the wheel?” – Darren Myles (@DRMJunior).

The first theme to emerge centers around a sense of self-advocacy and taking ownership of our own care. Certified Cancer Coach and Executive Director of Emerald Heart Cancer Foundation, Elyn Jacobs (@elynjacobs) considers empowerment as something that is “essential to successfully navigate the cancer journey. As an empowered individual, you can take the path of action and self-advocacy.”

Laurie Reed (@lreedsbooks) also believes being “empowered means recognizing that you have the ability and the right to act on your own behalf. Empowered means taking ownership of the power to effect change for your health and how healthcare is delivered.”

Brain Cancer Babe (@braincancerbabe) sees empowerment “ as taking control for yourself and of yourself.”

Liz Johnson (@wired4story) who calls herself “a career soldier of cancer”,  views the ability to “have some control in dealing with a disease that is completely beyond my control” as essential to her survival. “I’m the coach of my healthcare team (and policy makers and researchers) And all that goes into my survival,” she says. 

Lily Collison (@lilycollison), the mother of a son with Cerebral Palsy (CP), says that taking a more active role in the management of their condition, pushes patients beyond “being recipients of care.” 

Doing so is a proactive move, a term favoured by two-times breast cancer survivor, Georgina Tankard (@flowersorcakes) and Victoria (@terrortoria), founder of the Younger Breast Cancer Network (@YBCN_UK). 

“In the past, perhaps patients were expected to do as they were told. Nowadays with so many more options and so much information, patients can reasonably play a key role in decisions regarding their care,“ points out MS patient, Conor Kerley (@conorkerley). 

Theme 2. Information, choices and shared decision making

“Empowerment is having choices and being seen as the human at the centre of your care.” – Julia (@BCCWW).

Choice emerges as another central theme related to agency and control.  “Choice gives us that feeling of empowerment, “ says Elyn Jacobs, “it allows us to regain the much-needed control we somehow lost when we heard “You have cancer.” If you do not know your options, you do not have any. Empowerment comes from knowing your options, and obtaining the necessary information is critical to make the right choices for you, and for your cancer.”

As Elyn highlights, choice is informed by access to good, reliable information. In the words of cancer patient, Chris Lewis (@christheeagle1) “I need the information so that I can make informed judgments about my life.” 

How can patients be empowered if they don’t understand their condition?” asks Lily, who was amazed to read that a “2016 survey of 1,214 parents and caregivers of children with CP found that they judged available medical information to be inadequate to guide their decision-making. Another piece of research found that the greatest area of unmet need reported by young adults with CP was information.”

Having knowledge is one thing, but it’s the ability to act upon that information that is a key driver of empowerment. To quote Conor, “knowledge is power but only if that knowledge is acted upon.” 

For that to happen, the right environment needs to be facilitated around the patient. This leads us onto our next theme. 

Theme 3. Partnership and a team based approach to patient care

“Whether it’s called empowerment or involvement, the patient needs to feel they are part of the team”  – Noreen (@hiberniaroots).

Many spoke about the importance of a team-based, partnership approach to their care. As Stage IV TNBC patient advocate, Janice Cowden (@JaniceTNBCmets) explains, “I feel empowered through knowledge about my disease, as well as experiencing a team approach, or partnership, with my oncologist in planning my care.”

For caregiver, Wendy Morton (@wendyjanemorton) it’s important that “there is a partnership between ourselves and the care team. Also a genuine adherence to shared and thoughtful decision-making.”

In this team-based approach, patients still rely on their healthcare providers to actively engage with them.   “It’s still very much up to our doctors to let us know what types of options are out there and include us in decisions about how to get there,” emphasizes metastatic breast cancer patient, Meredith Kuiik  (@MeredithKulik).

For Susan Rudick (@susanruddick1), “the word isn’t as important as the patient being engaged and knowledgeable and most importantly being an integral member of the healthcare team when possible.”

Theme 4. Respect, understanding and compassion

“As a patient it’s a matter of LISTENING to us. Our voices are the power we have. What’s wrong doesn’t always show up in a diagnostic test or a scan. It’s our entire self – physical, emotional, psychological and the voice of the patient  is our empowerment” – Ilene Kaminsky (@ilenealizah).

Achieving this approach requires a willingness on the part of healthcare providers to create a space in which patients can ask questions and feel they are being heard on a human level.

In the words of breast cancer survivor Jen Douglas (@MMEJendouglas), it’s not just about understanding the diagnosis, but also having the opportunity “to ask questions and having providers who will take my concerns seriously.”

Metastatic breast cancer patient, Keillie (@LehrKellie) agrees. “Patient empowerment means I can ask questions to my oncologist and she will listen and discuss what I am asking. When I tell her of a side effect, she believes me even if it is not on the list of top side effects of that chemotherapy drug.”

Nancy Seibel (@nancylseibel) sums it up by saying, “I think it’s about respect, dignity and compassion on the part of healthcare professionals and patients. I can’t express in a single tweet how routine hospital and medical practices can humiliate and challenge one’s sense of self as a human worthy of respect.”  

As Elyn points out, “empowerment is hindered when a doctor does not respect the patient’s right to be part of the decision making or instills fear to obtain compliance. You are not just a patient, someone who is expected to passively accept the treatment plan being offered; you are a person, a person with choices.”

Being respected in this way has a circular effect, as Conor demonstrates by saying, “Personally, I believe that as I educated myself and became more empowered, that the attitude of my healthcare team towards me as a young adult changed and I was given more respect. This led to more shared decisions regarding my care and in turn led to me becoming more confident and feeling more empowered!”

It’s important to remember, in the words of Victoria, that “not every patient is the same and clinicians should adapt depending on an individual’s needs.” Patient advocate Barbara Jacoby (@letlifehappen) cautions that we mustn’t forget the cohort of patients who lack the knowledge and skills to become more informed in their care.  “I believe that it then becomes incumbent upon the medical team members to take the time to share with the patient and their caregiver, or other trusted person who can accompany them to their appointments, to explain proposed treatments and options and why such a course is considered to be the best for this individual person,” says Barbara. “Even if the person does not seem to want to be vested in their own decisions, the respect that the patient is given by the doctor builds a level of trust and confidence. This allows the patient to understand that they really matter and are seen as something more than another disease that needs to be treated. Knowing that you matter as a person will enhance the doctor/patient relationship and this automatically empowers the person to want to do their best.”

To conclude Part 1 of this discussion on patient empowerment I want to leave the final word to cancer patient advocate (@GraceCordovano).

Patient empowerment is often framed in the context of:

  1. Activating an individual patient, to essentially change their behavior to better themselves
  2. The doctor-patient relationship, with specific actions that could be done or incorporated to strengthen the interactions, trust, and clinical encounters.

A person’s health and pursuit of their best life with a diagnosis is so much bigger than these 2 traditionally referenced settings. Patients need to also be best supported to hack the health care ecosystem, to navigate its many silos and fragmented workflows, and to exceed the barriers that stand in the way of patients getting the care and resources they need to live their best life where they are.”

Join me for Part 2 of this discussion, where we will take a closer look at the role of peer-to-peer networks in building communities of information and support. I will also be asking if “empowerment” is an outdated concept.  Should we even be using the term in our discussions?   Join me for more answers to this question and further rich insights in Part 2. 

Quotation Inspiration: 10 Quotes to Inspire, Motivate and Uplift Cancer Patients

This month, I thought we could all do with a little quotation inspiration. When you’re dealing with cancer, some inspiring words can be just the thing to give you a daily lift.

Note this is not the same as saying that “thinking positive” is the best way to deal with cancer. While for some, a positive thinking mindset can help them cope, for many others, the tyrannical think positive brigade only makes us feel worse.

Thinking back on my own cancer experience, there were certain messages of hope and inspiration that I received which help bring some much-needed perspective to my situation.

So with the help of our community, I’ve compiled the following quotes and messages to inspire and uplift you today.


Julia (@juliabarnickle), turns to her own words of wisdom to get her through her various cancer experiences over the past twelve years. In particular this one: “Nothing in Life is worth worrying about.”

 

Nancy (@nancyspoint) also looks to her own words for motivation. “Be real. Be you. It’s enough,” she says.

 

Take a leaf out of Ilene’s (@ilenealizah) quotebook. “When inspiration moves to another neighborhood, I often reference poetry, especially Mary Oliver and Maya Angelou (And Still I Rise)” she says. “Yet I shiver in the cool winds of words whispered in history, my mind running wild as I open up my quotebook (notebook of quotes)‘ to add or to discover. I picked these randomly on purpose, and in no quantitative or qualitative importance of order:

 

“There is no greater agony than bearing an untold story inside you.” — Maya Angelou

 

“What lies behind us and what lies before us are tiny matters compared to what lies within us.” — Ralph Waldo Emerson

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”— Martin Luther King Jr.

 

“The knack of flying is learning how to throw yourself at the ground and miss.” —Douglas Adams

 

Sarah (@he4dgirl) shares with us a three-word quote from CS Lewis – one that I have turned to often myself: “Courage, dear heart.”

 

Another one of my favorites is from the author, Cheryl Strayed, who writes: “The place of true healing is a fierce place. It’s a giant place. It’s a place of monstrous beauty and endless dark and glimmering light. And you have to work really, really, really hard to get there, but you can do it. You’re a woman who can travel that far.”

 

Finally take inspiration from Cancer biologist, Triona (@NiTriona) and pass on some encouragement to another person today. Triona shares these words from poet and philosopher, John O’Donohue (Eternal Echoes) to remind us of the gift that encouragement bestows.

 

“One of the most beautiful gifts in the world is the gift of encouragement. When someone encourages you, that person helps you over a threshold you might otherwise never have crossed on your own.”

Music as Medicine: The Healing Power of Music

The late neurologist, Oliver Sacks in his book “Musicophilia: Tales of Music and the Brain,” argued that music is essential to being human in ways that we’ve only begun to understand. Music stimulates the brain centers that register reward and pleasure, which is why listening to a favorite song can make you happy.  There is in fact no single musical center in the brain, but rather multiple brain networks that analyze music when it plays, thereby giving music the power to influence everything from our mood to memory.

For cancer patients, music can be a powerful therapeutic tool in coping with a cancer diagnosis and treatment.   “Music was so important to me, “says breast density and cancer patient advocate, Siobhan Feeney (@BreastDense), “because my concentration was so poor I really struggled with reading books and watching movies through chemo.  I walked a lot and plugged into lots of beautiful music along the way.”

The Evidence Base for Music Therapy

Music therapy (the clinical use of music as a tool to help achieve treatment goals) is an evidence-based practice that harnesses the power of music to improve quality of life in people dealing with illness.  References to music therapy in the clinical setting dates back to a series of letters, published in The Lancet, in 1891, which discussed the approach of a group of musicians providing live music to patients in London hospitals. [1] From that point, music therapy established itself as a recognized health profession in the clinical context.

Research findings have supported a wide range of music therapy benefits from changing brain waves to lowering heart rate and blood pressure.  While clinical trials, to date, have been small, the results are promising.   Music therapy has been shown to boost the effects of anti-nausea medications in patients receiving chemotherapy and reduce pain perception.

In a study of patients who underwent surgery for lung cancer, the patients who received music therapy before and after surgery, reported less pain and had lower blood pressure, heart rate and anxiety. In addition, the dose and frequency of pain medication given after the surgery was reduced in the group who received music therapy. [2]

In 2013, a small Turkish study of 40 people found that using music therapy and guided visual imagery greatly reduced anxiety levels for patients undergoing chemotherapy.[3] The patients also had less frequent and less severe nausea and vomiting. Similarly, a study, conducted in 2017, found that music therapy could help reduce anxiety in patients having radiotherapy simulation. [4]

The benefits of music therapy are not confined to the clinical setting.  You can tap into your own self-directed music therapy session anytime by simply listening to some favorite songs or pieces of music. If you’re looking for some inspiration, check out the following suggestions crowdsourced online.

Although I’ve categorized these music choices according to genre, take a tip from breast cancer survivor and classically trained professional harpist, Amy Camie, who challenged herself to listen consciously to her sons’ heavy metal music. In doing so, Amy discovered music “can be a profound step in the exploration of self, in the conscious act of honest reflection that goes by many names–mindfulness, meditation, self-discovery, self-empowerment, and enlightenment.” [5]

Music Playlist

Choirs

Both Blanca (@BlancaUsoz), who is caring for someone with cancer, and John (@walls2) choose a piece of music sung by their favorite choirs.  For Blanca, listening to Leioa Kantika – Nel Blu Dipinto Di Blu (D. Modugno), sung by the choir of her hometown, lifts her mood.   “Music has played a pivotal role in helping me live with a terminal diagnosis,” says John. “I’ve been privileged to have gotten to know the amazing @mountsionchoir, who sang “Don’t Give Up” by @andygrammer for me at #ChoirsForCancer. It’s now my anthem.”

Classical

Jennifer (@vitalfrequencies) opts for a classical piece from Beethoven; his opera Fidelio, or his 5th,  6th and 9th Symphonies being particular favorites.

Indie Pop

Sally (@sally_crowe) finds Christine and The Queens’ song “Tilted” to be uplifting.

Rock

While Chris (@christheeagle1), who says he “fell back in love with his music collection through cancer”, chooses “Under The Bridge” by Red Hot Chilli Peppers, Ronny (@RonnyAllan1) suggests Oasis, “Don’t Look Back In Anger”.

Both Eva (@EvaAlloza) and Teresa (@tbaupuig) recommend listening to Spanish rock band  Jarabe de Palo. Lead singer, Pau Dones, recently died from colon cancer, but his songs, say Eva, “are full of vital energy.”

Wrapping Up

Music is a universal language. It can open the doors to empathy and understanding. In the words of Camie,”In a world full of separation, anger, prejudice, fear, judgment, and pain, perhaps by expanding our familiar musical tastes we could slowly develop a listening ear for others who may not fit into our comfortable genres. Perhaps listening to music that expresses life experiences from different perspectives will naturally nurture more tolerance and empathy for our brothers and sisters around the globe.”


References

[1] Boyde C, Linden U, Boehm K, Ostermann T. The Use of Music Therapy During the Treatment of Cancer Patients: A Collection of Evidence. Glob Adv Health Med. 2012;1(5):24-29.

[2] Wang Y, Tang H, Guo Q, et al. Effects of Intravenous Patient-Controlled Sufentanil Analgesia and Music Therapy on Pain and Hemodynamics After Surgery for Lung Cancer: A Randomized Parallel Study. J Altern Complement Med. 2015;21(11):667-672.

[3] Karagozoglu S, Tekyasar F, Yilmaz FA. Effects of music therapy and guided visual imagery on chemotherapy-induced anxiety and nausea-vomiting. J Clin Nurs. 2013;22(1-2):39-50.

[4] Rossetti A, Chadha M, Torres BN, et al. The Impact of Music Therapy on Anxiety in Cancer Patients Undergoing Simulation for Radiation Therapy. Int J Radiat Oncol Biol Phys. 2017;99(1):103-110.

[5] https://upliftconnect.com/building-tolerance-and-empathy-through-music/

How to Create a Month’s Worth of Posts for Your Advocacy Blog

Are you looking for a way to boost your advocacy activities online?

One of the best ways to do this is to create a blog.  Blogging shows your commitment and passion for your cause and because a blog is interactive, it’s also an extremely effective way to build a community and engage more people in your cause.

If you are brand new to blogging, and not quite sure how to start a blog, this step-by-step guide will get you up and running.

Many of us who blog start out with great intentions of writing regularly, but over time our inspiration well can run dry. Creating a blog is relatively easy; the challenge lies in consistently creating fresh content. Cancer blogger, Nancy Stordahl (@nancyspoint) recommends a consistent blogging schedule if you want to develop a loyal readership. “This takes commitment,” she explains, “which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”

In this article, I want to share with you a month’s worth of things to write about. Whether you’re new to blogging and looking for ideas to get started, or you’ve been blogging for a while but your writing has stalled, the following tips are designed to kick-start your writing efforts.  Commit to consistency by writing one blog post a week for the next month with these topic ideas as your guide.

10 Ways to Create a Month’s Worth of Blog Posts

1. Share Facts and Answer Questions for Your Readers

You might like to start by asking your readers what kind of questions they have that you can answer for them.  You could use Instagram, Twitter or Facebook to do this or you could search on a question and answer platform like Quora. On Quora you can ask a question about your topic or simply do a search using your topic keyword to find what people are asking about that topic. Make a list of those questions which you feel you could write about. When you have written a blog post on the topic, go back into Quora and answer a question related to the topic. You can include a link to your post in your answer.

2. Recycle Old Posts

Recycling content simply means taking one piece of content and finding a new way to create content around it. Identify your most popular content through your blog analytics tool. Now brainstorm some ways in which you can take this content and turn into a fresh post.  Can you turn it into a video or audio post? Are there any new research or treatment updates you can add since you first published this post? Can you get creative and create an infographic or develop a downloadable checklist using the original post as a starting point? You’ve already spent time and effort in creating your content, now spend a little more time to maximize that effort.

3. Compile a Glossary of Medical Terms

One of the things I remember most when I was a newly diagnosed patient was how mystifying the world of cancer was for me. I had to learn a whole new language consisting of unknown medical terms and scientific jargon to be able to understand my diagnosis. Make the process less mystifying for newly diagnosed patients by putting together a useful list of medical and scientific terms (as I did with this Clinical Trials Jargon Buster) and publishing it on your blog.

4. Share the Latest Medical Research in Your Disease Area

Have you been to a conference where you learned about new medical research? Or read about the latest research in a medical journal?  Let your readers know about it through your blog by providing a summary of the key findings and translating the information into easy to understand language for other patients.

5. Create a Reader’s Poll

There are several online tools you can use to create a readers’ poll. If you have a WordPress.com site, then you’ve already got Polldaddy polls built in. You can create, manage, and see results for all of your polls directly in your WordPress.com dashboard. If you use a self-hosted WordPress site, install the Polldaddy WordPress.org plugin. Once you’ve collected your poll data, publish a follow-up post with your findings.

6. Write about a Typical Day in Your Life

What’s it like to live with your condition on a day-by-day basis? What insights can you share to help others understand what a typical day is like for you and patients like you? Can you share helpful tips to cope with common everyday difficulties? Do you have advice for how family and friends can help you navigate your illness? As a person with lived experience you are in a unique position to shed light on what it’s like to cope with your illness by writing about it on your blog.

7. Embed Slide-Decks of Your Talks

Have you recently spoken at an event? Did you use slides in your presentation? Did you know you can upload your slide-decks directly to a platform called SlideShare? This is a great way to develop a portfolio of your speaking work and showcase it on your blog by simply inserting the embed code provided by SlideShare.

8. Invite a Guest Blogger to Write For You

Inviting another patient or healthcare professional you admire to write for you, not only expands your blog’s reach and readership, but adds a valuable new perspective to your site. For example, each week, Nancy Stordahl invites a different metastatic breast cancer patient to share their story on her blog for her regular #MetsMonday post.

9. Create Recurring Content

Creating regular recurring content, like Nancy does with #MetsMonday, is another excellent way to keep consistent with your content creation. Another suggestion is to create a round-up post each week – this could be a round-up of the latest research or a link to useful resources and articles you think would be helpful to share with your readers. Pick a day for this and stick to that day each week so readers know what they can consistently expect from you.

10. Plan Posts around Seasons and Events

This final tip is one of the easiest ways to create content on your blog that you can use on a regular basis. For example a post on how to survive the holiday season, or healthy eating during the holidays is a post you can use year after year. Add the dates of awareness days, such as World Cancer Day, to your calendar as a reminder to create content around these events.

Patient Advocacy: 10 Ways To Create Share Worthy Content For Social Media

 When you want to raise awareness of your cause, amplify your advocacy activities and create change where it is needed most, social media is an important channel to share your message with the world.

But it’s not enough just to create content and push it out online. How you create, publish, and promote your content will directly impact the chances that people will see it and want to share it with others.  In this article, you’ll learn 10 tried and tested ways to help you maximize your social shares and increase your social reach.

1. Create Something Worth Sharing

Let’s get straight to the point here. If you want people to share your content, you need to give them something worth sharing. The New York Times Customer Insight Group did a fascinating study a few years ago on the psychology of social sharing. It named five primary motivations for sharing:

  • People want to better the lives of others 
  • People want the content to reflect their online identity 
  • People want to grow and nourish relationships 
  • People share because they like the feeling of having others comment on it and engage
  • People want to spread the word about something that they believe in 

Actionable Tip:  Create content that your audience will want to share because they believe it will be of value or interest to others. Before you post something, stop and ask yourself would this pass the re-share test above?

2. Ask Your Followers What They Want To Learn About

One way to ensure you are creating content your followers want to read about and share is to simply ask them what kind of content they’d like more of.  You can create quick polls on Facebook, Twitter, and Instagram and post a question such as “What content do you want to see more of?”

Actionable Tip:  To take your audience research a step further you could survey your followers to get a deeper understanding of their preferences. Survey Monkey, Polldaddy and Google’s own survey forms are all simple tools to use.

3. Curate Relevant Content

Information is power and patients are becoming more empowered through increasing access to medical information online. However, one of the biggest challenges we face is trying to filter the vast repository of online content to find trustworthy content.  Instead of more information what we really need is more accessible, understandable and credible information on which to base our healthcare decision-making.

One solution is to curate reliable, up-to-date medical information in a format that is easy for patients to access, digest, and understand. Content curation is the process of finding and aggregating information about a specific topic, synthesizing it to be most relevant to your audience, and sharing it in an easily digestible manner.  Curation can deliver many benefits including, establishing thought leadership and credibility, increasing visibility and driving social shares.

Actionable Tip: Read this previous PEN article to learn how to become a more effective content curator for your healthcare community.

4. Use Relevant Hashtags

If you are using social media to find and share health information, chances are high you are already using hashtags. Hashtags, a way for users to easily find similar themed content, are used regularly by millions of social media users on Instagram and Twitter.

Actionable Tip: For more information on using hashtags strategically, read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

5. Grow Your Online Followers

The more people who follow you on social media, the more you can amplify your content and increase your social shares. A great way to find like-minded followers is to search using disease-specific hashtags or join a Twitter chat related to your disease or condition, such as #gyncsm, #lcsm, #bcsm, etc

Actionable Tip: Read 12 Keys to Finding, Growing, and Nurturing Your Online Community for more tips on how to grow your online followers.

6. Add Images To All Your Posts

When it comes to creating content to support your message, the type of content you create matters. Humans are visual creatures — 90% of information transmitted to your brain is visual — and because of this people are drawn to visual elements that attract their attention. Images are shared more often than text only posts. Visual content is more than 40X more likely to get shared on social media than other types of content.

Actionable Tip: Add an image to all your online posts — even those that aren’t obviously visual. Read this guide to creating your own eye-catching visuals.

7. Create Infographics

Information graphics or infographics are stand-alone graphic visual representations of information, data or knowledge. They are a form of visual content that is highly shareable; consistently “liked” and shared on social media three times more than any other type of content. In fact, the words “infographic” and “infographics” are searched an average of 547,000 times per month in Google.

Actionable Tip:  People are irresistibly drawn to facts, figures, and statistics. When you combine these with compelling graphics you have a persuasive tool to help your content cut through the online noise. A tool like canva.com will make it easy for even the novice designer to create interesting infographics.

8. Write Better Headlines

One of the ways to make your content more shareable is to write better headlines. Think about how many headlines you read every day while searching online or browsing social media. What makes you actually click on an article or post to read it? Quite often it’s the headline. Your headline is the first (perhaps only) impression you make on a prospective reader so it’s worth taking time to create a good one.

Actionable Tip:  Use numbers in your headlines. Several research studies have shown that headlines with numbers tend to generate significantly more social shares and engagement (interestingly, research shows that headlines that contain odd numbers have a higher click-through rate than headlines with even numbers).  When adding numbers to your title, use the numeral, not the word, as we tend to scan headlines online and a numeral makes your title more scannable.

9. Repurpose Your Best Content

Identify your top performing content in terms of shares, comments, likes, etc.  Now brainstorm some ways in which you can take this content and turn into something else.  For example, create an infographic to highlight key statistics, turn a quote into a graphic, or develop a downloadable eGuide.

Actionable Tip:  There are so many possibilities to get more out of high-performing content and increase your shares. Read How To Create Six Unique Social Shares From Just One Piece of Content for ideas on how to repurpose your content.

10. Analyze What’s Working For Your Peers

Look at the type of content your peers are creating. Identify which content is performing well for them in terms of social shares, comments, likes, etc. Think about how you can take a piece of content they have created and add your own insight and expertise to make it more even more valuable to your followers. I don’t mean you should copy their content verbatim, but use it as inspiration for your own content.

Actionable Tip: I use Buzzsumo.com to see which popular content is most shared right now on social media. These are the topics people want to read about so it’s worth brainstorming ideas around this content.

As you can see, with a little imagination and creativity there are many ways to increase engagement and reach with your existing content.  Try some or all of these tips and do let me know how it goes for you.

Practicing Self-Care in the Time of Coronavirus – How to Mind Your Mental Health and Well-Being During Covid-19

As the coronavirus outbreak continues its relentless spread, the impact of the pandemic is being felt across the globe. We are facing a critical time of fear and uncertainty individually and in our communities.

COVID-19 will affect us all to varying degrees –  physically, emotionally, socially and psychologically.  

You may notice an increase in some of the following feelings:

  • feeling stressed and anxious
  • fearing that normal aches and pains might be the virus
  • excessively checking for symptoms, in yourself, or others
  • becoming irritable more easily
  • feeling insecure or unsettled
  • having trouble sleeping
  • feeling helpless or a lack of control
  • having irrational thoughts

Both The Centers For Disease Control and Prevention (CDC)[1] and  The World Health Organisation (WHO)[2] have responded to the psycho-social impact of coronavirus by releasing  guidelines for those whose mental health is being negatively impacted.

In addition to these guidelines, many patient leaders are providing information and support to their communities through their social media channels.  To quote board certified coach, Nancy Seibel (@NancyLSeibel)  “those of us who have had cancer and other serious health challenges know something about how to self-calm and cope with uncertainty.  We know a lot about life being upended; uncertainty; living with but not in fear. It’s a hard-won gift, one that we can share with others.”  

While this is naturally a worrying time, there are many things we can do to mind our mental health and boost our immunity and well-being at this time. Being proactive about how you handle this crisis can help to keep both your mind and body stronger. I hope you will find the following tips helpful and reassuring as you navigate your way through this time of global crisis. 

10 Ways To Take Care Of Your Mental Health And Wellbeing During Covid-19

1. Recognize  What You Can Control

While many of the things that surround this crisis are outside of your control, you can still focus on those things that are within your control. Hand washing,  staying at home,  limiting unnecessary travel and contact with others are steps we can all take to decrease our personal risk and protect others.   If you’re a cancer patient, currently undergoing treatment, you are in a high-risk group because cancer treatment compromises your immune system[3]. Follow the advice for High Risk Patients outlined on the Centers for Disease Control and Prevention (CDC) website.[4] 

That said, the reality of life as a cancer patient has probably prepared you for this moment better than most.  As breast cancer survivor, Diane Mapes, wrote in a recent Fred Hutch [5] article, “For the immunocompromised and those with disease, social distancing and uncertainty are a way of life.”

2. Focus On  The Facts

In a world of 24/7 rolling news and social media updates, it’s easy to get drawn into speculation and hype.   “It’s ok to be scared,” says breast cancer survivor, Karen Murray (@MurrayKaren),  “but don’t let fear take hold.” Rumors, myths and falsehoods can take on a life of their own if we let them, but as patient advocate, Nancy Stordahl[6] reminds us, “calmness is contagious too.”   

Keeping a realistic perspective of the situation based on facts is important at this time. Avoid media outlets that build hype or dwell on things that can’t be controlled. Stick to respected sources of information on the coronavirus and how to handle it. 

If you’re unsure  about something you’ve  read or heard, check it on the International Fact-Checking Network (IFCN) at the Poynter Institute[7].   If you’re concerned about whether you may have COVID-19,  the Cleveland Clinic[8] has a free screening tool to find out your risk level, based on your symptoms and travel. Additionally,  Intermountain’s COVID-19 Symptom Checker[9] is an easy to use, digital tool to help people get important information about COVID-19, assess their risk, and navigate to the most appropriate care setting.  “These are scary times, for sure,” points out Nancy, “but knowledge is power. Learn what you need to in order to keep you and your loved ones safe.” 

3. Limit Your Exposure To The News

The constant stream of social media updates and news reports about coronavirus could cause you to feel extremely stressed. If the constant drip feed of live news and social media is making you  anxious,  limit your exposure to news outlets.  I’m not suggesting you totally  ignore important news  updates – it’s essential to keep yourself informed. But you can reduce your anxiety by reducing the amount of time you expose yourself to the news.  Limit your media consumption to a certain amount of time each day. According to WHO, minimizing the amount of news you watch can be beneficial in helping people keep calm and positive.  The organization also suggests we “find opportunities to amplify positive and hopeful stories and positive images of local people who have experienced Covid-19.”

4. Practice Good Self-Care 

It’s important to pay attention to your self-care needs, especially during times of stress. Eating a healthy, balanced diet, avoiding excessive alcohol and stimulants, getting plenty of sleep, practising relaxation techniques, such as breathing exercises and meditation, and  taking daily exercise are key ways to stay physically and psychologically  healthy during stressful times.  Oncoplastic breast cancer and reconstructive surgeon,  Dr Tasha Gandamihardja (@DrTashaG) also suggests you “do little things that give you joy e.g. watch  a favorite program or read a favorite book.” 

Don’t put too much pressure on yourself at this time, advises metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle). “On days when I don’t have the energy to do much, I tell myself ‘just do one thing.’ If I feel like doing more, that’s great, but I never feel guilty about only being able to do one thing. So I choose the one thing that feels most important, whatever it is,” she says.

5. Keep Active

Build regular exercise into your day. There’s an abundance of scientific evidence showing how important fitness is for mental health: so during this very stressful time, it’s even more important.  The closure of gyms at this time doesn’t of course mean you can’t keep fit. Going for a walk or hike (if you  aren’t self-quarantined) watching a workout video online, practicing yoga or walking up and down stairs in your home are all ways to keep active and fit.   Cancer researcher, Emily Drake  (@EK_Drake), has seized on this time as an opportunity to learn to run. “I’ve never been a runner,” she explains, “ but with gyms and yoga studios closed – online just doesn’t work for me –  I need to get out.”

6. Eat To Beat Stress

Registered dietitian,  Cathy Leman[10] recommends you mix and match from these 29 foods each day to boost your body’s stress busting powers.

  • Vitamin C fruits and veggies
  • Green and red peppers, potatoes, oranges, grapefruit, strawberries, tomatoes, kiwi, cauliflower, cabbage, onions
  • Vitamin E foods
  • Dry roasted sunflower seeds, almonds, spinach, safflower oil, wheat germ, green leafy vegetables
  • Polyphenolic foods
  • Chocolate, tea, coffee
  • Complex carbohydrate foods
  • Barley, rye, oats, whole wheat
  • Omega 3 foods
  • Walnuts, ground flax seeds, fatty fish, chia seeds, canola oil

7.  Stick To A Daily Routine

Your daily routine may be affected by the coronavirus outbreak in different ways. But according to WHO, people should try to stick to their daily routines as much as possible.  “Ensure that you create a realistic and helpful daily routine and structure to your day, and stick to it, “ recommends psychotherapist, Karin Sieger.[11] “Have regular times for getting up and going to bed as well as meal times.”

For those of us who are working from home maintaining a routine can be challenging.  The temptation to sit in pajamas all day is real. Try to  stick to a working routine as much as possible – this includes structuring  your day with regular breaks (try working in 45-60 minute chunks of focused work followed by a short break),  minimizing distractions,  stopping for lunch, getting some fresh air, avoiding staying in the same position for prolonged periods  of time and keeping hydrated.  

8. Stay Connected

While “social distancing,” is hypothesized to flatten the curve of the contagion,[12] it’s not without costs. Research shows that social support is vital for our mental and physical health. According to WHO, individuals in isolation are one group that may feel the impact on their mental health the most.  To combat the loneliness of self-isolation, the organization advises people  to “stay connected and maintain your social networks”. 

Maintaining strong connections will help you to feel supported, but since face-to-face in-person support is limited we need to find other ways to connect and receive support. Patient advocate,  Terri Coutee (@6state)  recommends  utilizing online platforms. “Call/text family members often and talk about fun times together,” she suggests.  Social media and social messaging apps are  a boon at this time. Patient advocate, Siobhan Feeney (@BreastDense) says she is “so grateful for my social media friends in many countries as we share the burden of this pandemic.”  In addition,  individuals who are self-isolating can also use QuarantineChat,[13] a new app that aims to connect people who are quarantined and may not have close family or friends to call. [14]

9.  Find Creative Distractions

Doing something creative can help improve your mood when you feel anxious or low. Creative activities can also increase your confidence and make you feel happier. This is because creative hobbies often completely absorb your attention, helping you to temporarily forget negative thoughts.  Carolyn Thomas (@heartsisters) shares this lovely idea for creating together with friends: “my paper-crafting friends and I are having our first ever virtual card-making workshop together via the miracle of video chat…. We each have a number of springtime birthdays coming up among our families and friends, so we’ll be creating springtime-theme birthday cards today.”

Looking for some more creative ideas? From baking to blogging, journaling to jigsaws, Sara Liyanage, author of Ticking Off Breast Cancer, has compiled a bumper list of distractions[15] for you to try.  Also check out PEN’s own Activity Guide here.   Experiment until you find something that suits you.

10. Practice Kindness and Self-Compassion

Nancy Seibel recommends shifting your focus to giving and receiving kindness.  “You’ll be worried, anxious or fearful at times. That’s a natural response to what’s happening, “ she says. “Accept those feelings compassionately. See if there’s anything to learn from them. Then shift your attention. Focus on what you’re grateful for. Walk. Ride your bike. Write. Dance.” She recommends starting with your own self-care, before expanding it out to others. “Calm and center yourself with meditation, deep breathing, knitting – whatever soothes you. Then support others. Spread a contagion of joy, love and kindness! That’s what will get us through this turbulent time.”

This Too Shall Pass

One of the things that is helping me right now is to tell myself that this reality is not forever. Patient advocate, Liza Bernstein[16] reminds us that while  “for now, #COVID19 feels like the entire world’s permanent reality… [but] within that, there are moments, nuances, and joy. There is hope, a delicious piece of chocolate, or a beautiful flower, or a hilarious meme, of if you’re lucky, a dog to play with, a loved one to hug (if you’re in the same home and healthy!)… or whatever floats your boat.”

The spread of coronavirus is a new and challenging event. Most people’s lives will change in some way over a period of days, weeks or months. But in time, it will pass. My wish for you today, especially if you are feeling anxious, alone, or fearful, is that you can find something to hold onto in this moment. To quote psychologist and breast cancer and SCAD survivor, Elizabeth McKenzie[17], “In this moment, as I write this, I have all that I need. I have my breath. I have my mind. I have my family. I have friends. I have shelter. I have clean water and good food. I have the nearby woods in which to walk. Not all moments are like this but right now it is.”


Additional Resources

At Home Self-Care Tips for Parents During a Pandemic

References

[1] CDC. Coronavirus Disease 2019

[2] WHO. Mental Health and Psychosocial Considerations During

COVID-19 Outbreak  In January 2020, The WHO declared the outbreak of a new coronavirus disease to be a Public Health Emergency of International Concern.

[3] Fred Hutch. Coronavirus: what cancer patients need to know

[4] Centers for Disease Control and Prevention. Are You at Higher Risk for Severe Illness?

[5] Fred Hutch. Lessons from cancer patients in the time of coronavirus

[6] Nancy’s Point. What Can Cancer Patients (or anyone) Do to Protect Themselves & Others During the COVID-19 Pandemic?

[7] The #CoronaVirusFacts / #DatosCoronaVirus Alliance unites more than 100 fact-checkers around the world in publishing, sharing and translating facts surrounding the novel coronavirus https://www.poynter.org/coronavirusfactsalliance.

[8] Cleveland Clinic. Find Out Your COVID-19 Risk

[9] Intermountain Healthcare. COVID-19 Symptom Checker.

[10]Dam.Mad. About  Breast Cancer. Eat These 29 Foods to Help You Manage Stress

[11] Karin Sieger. Coping With Difficult Times.

[12] Live Science. Coronavirus: What is ‘flattening the curve,’ and will it work?

[13] https://quarantinechat.com

[14] Quarantine is the separation and restriction of movement of people who have potentially been exposed to a contagious disease to ascertain if they become unwell, so reducing the risk of them infecting others. This differs from isolation, which is the separation of people who have been diagnosed with a contagious disease from people who are not sick; however, the two terms are often used interchangeably, especially in communication with the public. The psychological impact of quarantine and how to reduce it: rapid review of the evidence

[15] Ticking Off Breast Cancer. Ways To Distract Yourself During Self-Isolation.

[16] It’s The Bunk. It’s #Covid19 – Start Where You Are

[17] My Eyes Are Up Here. All I Need

How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer?

How do you find the right words to say?

What is the best way to support them?

And how do you cope with your own emotions and feelings at the same time?

In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer.  The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.

Firstly, acknowledge that this can be a hard time for you too

Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for.  You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb.   Breast cancer survivor, Nicole McClean[1] describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease:  “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”

But don’t make it about you

In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties.  Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”

Just ask what’s needed

“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc),  is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.”  Breast  surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”

Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”

Listen, hear and do

“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.”  The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“  

John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”

Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises,  “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”

And it’s ok to not know what to say sometimes.

“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”

HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.”  Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”

Do what needs to be done

Don’t ask her what she needs, just do something that she needs,”  recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”

“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”

Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help.  You may have to drop a high priority task but when the call for help comes. Go!” 

Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”

This theme of cooked meals comes up again and again. 

“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy.  Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”

After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense)  recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget. 

Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbor who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”

Give thoughtful gifts

From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD[2], author of Braving Chemo, writes:  “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”

Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”

Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”

“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.

Although be mindful that not everyone appreciates the same things. 

“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.”  Breast cancer blogger, Sheri[3] received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.

Help with treatment decisions

If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources  and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.

Offer compassion and kindness

Two-times breast cancer survivor and patient advocate Terri Coutee[4] believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”

John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”

Sara Liyanage, author of Ticking Off Breast Cancer [5]  reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”

Treat your friend like you normally would

Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.”  Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”

Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,”  she points out.  Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”

Know when to back off

“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”

Knowing when to be there for your friend, and when to give them space isn’t always easy.  but it’s an important balancing act as a good friend.  In Tips for Being A Great Cancer Friend, Steve Rubin,[6] points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”

It may take time to find the right balance, so let your friend guide you.   Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment.  Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”  

At the same time, Terri Coutee advises gentle persistence:  “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,”  she says.  Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”

Make your support ongoing

Support is not just one and done.  In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”

Final thoughts

Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. [7]

“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.

“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”

Tailoring your help to what your friend needs and enjoys most is the best way to be a friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl) points out “the answers will surely be as varied as we are, both in life generally, our experience of cancer, and our connection with our friend.”


[1] Nicole McClean. My Fabulous Boobies.

[2] Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients

[3] Life After Why

[4] Terri Coutee, DiepCJourney

[5] Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”

[6] Steve Rubin, The (Other) C Word

[7] American Cancer Society, “How to Be a Friend to Someone With Cancer”

Cancer Trauma: How To Know If You’re At Risk and Key Strategies for Recovery

The impact of cancer extends beyond the merely physical. While treatment targets cancer specifically in the body, the experience doesn’t leave the mind, spirit or emotions untouched.  The toll it takes has been likened to a natural disaster or trauma. In fact, recent studies have put forward the theory that surviving cancer fits the framework of Post Traumatic Stress Disorder (PTSD). [1] The term PTSD is commonly used to describe a range of symptoms an individual may develop in response to experiencing a traumatic event, in which bodily harm was experienced or threatened.

Most people associate PTSD with war veterans and victims of violent crime, but any life experience in which our safety and mortality are threatened can trigger PTSD. The physical and mental shock of having a life-threatening disease is a traumatic event for many cancer patients.[2] The experience of trying to get back to normal after cancer treatment ends mirrors that of returning combat soldiers. The immediate crisis is over but our sense of security is shattered, leaving us feeling unsettled and vulnerable.

And what of those for whom treatment doesn’t end?  Metastatic breast cancer patient, Abigail Johnston points out that “for men and women enduring the trauma of cancer treatment, the trauma is never over… reminders exist everywhere, ready to pop out when least expected to wreak havoc.” [3]

Could You Have Cancer-Related PTSD?

The symptoms of PTSD are similar to those of other states such as depression and anxiety, but one of the main signs that distinguishes PTSD is re-experiencing the traumatic event, often in the form of recurrent dreams or intrusive thoughts.  These may consist of persistent memories of taste, smell, touch, and sound (for example you may still be able to “taste” the metallic taste of chemotherapy when you think about the event).

A number of risk factors may make you more vulnerable to PTSD.   Your life experiences, including the amount and severity of trauma you’ve gone through since early childhood; having a high level of stress or other mental health problems, such as anxiety or depression; lacking a good support system of family and friends; and the way you deal with stress are all contributing factors.  On the other hand, certain factors, such as increased social support, accurate information and supportive medical staff may lower the risk of developing PTSD.

Signs and Symptoms of PTSD

Symptoms of PTSD can arise suddenly, gradually, or come and go over time.  Sometimes symptoms appear seemingly out of the blue. At other times, they are triggered by something like the anniversary of your diagnosis or surgery, follow-up scans, or a certain image, sound or smell.

There is no right or wrong way to think, feel, or respond to cancer, but it’s important to know which symptoms and signs to look out for, so you can put strategies in place to deal with it. People react in different ways to traumatic events and you may experience some or all of the following reactions to a greater or lesser degree.

  • Re-living the traumatic event: Intense memories of the time around your diagnosis, flashbacks or nightmares, especially if accompanied by symptoms like racing heartbeat, shortness of breath, sweating, nausea, or uncontrollable shaking.
  • Increased arousal: Feeling hyper-alert ( the “fight” and “flight” reaction is always on even though there is no present danger at hand), on edge, irritable, easily startled or angered; mood swings, difficulty sleeping or concentrating.
  • Avoidance: Staying away from places that remind you of the traumatic time (for example, avoidance of follow-up appointments).

8 Key Strategies and Tips for Recovery

 

1. Acknowledge and accept your feelings

Don’t deny or ignore how you are feeling. Accepting your feelings is part of the healing process. Allow yourself to feel what you feel without judgment or guilt. Remember,  there is no right or wrong way to think, feel, or respond to cancer.  Be compassionate to yourself and patient with the pace of recovery.  Talk through your fears with someone you trust. Try journaling, art or other creative outlets to help you work through your feelings.

2. Avoid obsessive thinking

While it’s  important not to ignore your feelings, obsessively dwelling on them will slow the healing process down.  One tip is to designate one or two 10-minute periods each day, time in which you can fully focus on your feelings. When intrusive thoughts come into your head during the day, write them down and “postpone” them to the period you’ve designated.

3. Reduce your stress

Make relaxation a part of your regular routine. Learn to meditate, practice yoga, take a walk in nature or do whatever it is that helps you relax and unwind. Relaxation is not a luxury – it is a necessary step in your recovery.

4. Take regular exercise

Regular exercise boosts serotonin, endorphins, and other feel-good brain chemicals.  It’s one of the simplest and most effective ways to reduce stress and anxiety, helping you feel grounded in times of emotional stress.

5. Eat a healthy diet

A healthy body increases your ability to cope with stress from a trauma.  Foods rich in certain omega-3 fats—such as salmon, walnuts, soybeans, and flaxseeds—can give your mood a boost. Avoid caffeine, alcohol and nicotine, which can worsen symptoms.

6. Get plenty of sleep

Poor sleep can make your trauma symptoms worse. Go to sleep and get up at the same time each day and aim for 7 to 9 hours of sleep each night.

7. Pay attention to triggers

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

8. Connect with others

Following a trauma, you may want to withdraw from others, but isolation makes things worse. Research shows that support from others is an important part of your healing journey.  Look to cancer support groups in your area or search online for groups.   Talking to a psycho-oncologist or counsellor can also help.

When to Seek Help

It’s normal to feel anxious and unsettled after a traumatic event such as cancer.  A diagnosis of cancer is distressing, the treatments and side effects are stressful, and the fear of recurrence is frightening.  Most people find the intensity of their feelings will ease in a relatively short period of time, but for some the feelings will stick around or increase in intensity.

If painful thoughts and intrusive memories last longer than a month, and begin to cause problems in your  personal relationships, employment, or other important areas of daily life,  it’s important to seek a professional diagnosis of PTSD. The sooner PTSD is tackled, the easier it is to overcome.  Unfortunately, many patients are not referred to psycho-oncology services to be assessed and treated, as high levels of sadness and anxiety are often perceived as ‘normal’ reactions to cancer diagnosis and treatment,[4] so it may be up to you to advocate for your own assessment.

Types of treatment can include cognitive-behavioral therapy (adapting negative ways of thinking into more positive ones to help “re-frame” the traumatic experience); exposure therapy (to help you safely face the thing that you find frightening); medication (antidepressants/anti-anxiety drugs); and psychotherapy. When looking for a therapist, seek out mental health professionals who specialize in the treatment of trauma and PTSD.

You may also want to consider a form of treatment called EMDR (Eye Movement Desensitization and Reprocessing), which incorporates elements of cognitive-behavioral and exposure therapy with rhythmic eye movements designed to stimulate the information-processing system in the brain. The aim of the treatment is to help you process the traumatic events, and speed up recovery.

Conclusion

A trauma like cancer shatters our sense of security,  making us feel powerless and vulnerable. Taking positive action towards recovery directly challenges this sense of helplessness and helps us regain a sense of control.  It can take time to get over the trauma and feel safe again.  But by seeking treatment, reaching out for support, and developing new coping skills you can heal and move on with your life.


[1] The Diagnostic and Statistical Manual of Mental Disorders introduced malignant disease in its definition of PTSD in 1994.

[2]  The National Cancer Institute estimates that approximately 35% of patients experiencing cancer may suffer symptoms of PTSD.

[3] No Half Measures. “The Violence of Cancer” https://nohalfmeasures.blog/2020/01/09/the-violence-of-cancer/

[4] Leano, A., Korman, M. B., Goldberg, L., & Ellis, J. (2019). Are we missing PTSD in our patients with cancer? Part I. Canadian oncology nursing journal = Revue canadienne de nursing oncologique, 29(2), 141–146.

Understanding Clinical Trials: A Jargon Buster Guide

When it comes to cancer treatment you or a loved one may be considering participating in a clinical trial as a treatment option.  Clinical trials are designed to evaluate the safety and effectiveness of a treatment. They may involve researchers administering drugs, taking blood or tissue samples, or checking the progress of patients as they take a treatment according to a study’s protocol.

Learning about clinical trials can be a steep learning curve – not least because the process comes with a lot of new terms, acronyms and jargon.  To help you, I’ve put together this list of the most common terms you will find when you are researching clinical trial information. This is not an exhaustive list but it is a helpful starting point. At the end of this article you will see links to find more information.

Adverse Effects (AE)

Also called Adverse Events, or Adverse Drug Reaction, AEs are any harmful event experienced by a person while they are having a drug or any other treatment or intervention. In clinical trials, researchers must always report adverse events, regardless of whether or not the event is suspected to be related to or caused by the drug, treatment or intervention.

Arm

Subsection of people within a study who have a particular intervention.

Bias

Bias is an error that distorts the objectivity of a study. It can arise if a researcher doesn’t adhere to rigorous standards in designing the study, selecting the subjects, administering the treatments, analysing the data, or reporting and interpreting the study results. It can also result from circumstances beyond a researcher’s control, as when there is an uneven distribution of some characteristic between groups as a result of randomization.

Blinding

Blinding is a method of controlling for bias in a study by ensuring that those involved are unable to tell if they are in an intervention or control group so they cannot influence the results. In a single-blind study, patients do not know whether they are receiving the active drug or a placebo. In a double-blind study, neither the patients nor the persons administering the treatments know which patients are receiving the active drug. In a triple-blind study, the patients, clinicians/researchers and the persons evaluating the results do not know which treatment patients had. Whenever blinding is used, there will always be a method in which the treatment can be unblinded in the event that information is required for safety.

Comparator

When a treatment for a specific medical condition already exists, it would be unethical to do a randomized controlled trial that would require some participants to be given an ineffective substitute. In this case, new treatments are tested against the best existing treatment, (i.e. a comparator). The comparator can also be no intervention (for example, best supportive care).

Completed

A trial is considered completed when trial participants are no longer being examined or treated (i.e. no longer in follow-up); the database has been ‘locked’ and records have been archived.

Control

A group of people in a study who do not have the intervention or test being studied. Instead, they may have the standard intervention (sometimes called ‘usual care’) or a dummy intervention (placebo). The results for the control group are compared with those for a group having the intervention being tested. The aim is to check for any differences. The people in the control group should be as similar as possible to those in the intervention group, to make it as easy as possible to detect any effects due to the intervention.

Efficacy

How beneficial a treatment is under ideal conditions (for example, in a laboratory), compared with doing nothing or opting for another type of care. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed.

Eligibility Criteria/ Inclusion and Exclusion Criteria

Eligibility criteria ensures patients enrolling in a clinical trial share similar characteristics (e.g. gender, age, medications, disease type and status) so that the results of the study are more likely due to the treatment received rather than other factors.

Follow-up

Observation over a period of time of participants enrolled in a trial to observe changes in health status.

Informed Consent

A process (by means of a written informed consent form) by which a participant voluntarily agrees to take part in a trial, having been informed of the possible benefits, risks and side effects associated with participating in the study.

Intervention

The treatment (e.g., a drug, surgical procedure, or diagnostic test) being researched. The intervention group consists of the study participants that have been randomly assigned to receive the treatment.

Investigator

A person responsible for the conduct of the clinical trial at a trial site. If a trial is conducted by a team of individuals at a trial site, the investigator is the responsible leader of the team and may be called the principal investigator (PI).

Multicentre Trial

A clinical trial conducted according to a single protocol but at more than one site, and therefore, carried out by more than one investigator.

Number needed to treat (NNT)

The average number of patients who need to receive the treatment or other intervention for one of them to get the positive outcome in the time specified.

Outcome Measures

The impact that a test, treatment, or other intervention has on a person, group or population.

Phase I, II, III and IV Studies

Once the safety of a new drug has been demonstrated in tests on animals, it goes through a multi-phase testing process to determine its safety and efficacy in treating human patients. If a drug shows success in one phase, the evaluation moves to the next phase

  • Phase 1 tests a drug on a very small number of healthy volunteers to establish overall safety, identify side effects, and determine the dose levels that are safe and tolerable for humans.
  • Phase II trials test a drug on a small number of people who have the condition the drug is designed to treat. These trials are done to establish what dose range is most effective, and to observe any safety concerns that might arise.
  • Phase III trials test a drug on a large number of people who have the condition the drug is designed to treat. Successful completion of Phase III is the point where the drug is considered ready to be marketed.
  • Phase IV trials can investigate uses of the drug for other conditions, on a broader patient base or for longer term use.

Placebo

A fake (or dummy) treatment given to patients in the control group of a clinical trial.  Placebos are indistinguishable from the actual treatment and used so that the subjects in the control group are unable to tell who is receiving the active drug or treatment. Using placebos prevents bias in judging the effects of the medical intervention being tested.

Population

A group of people with a common link, such as the same medical condition or living in the same area or sharing the same characteristics. The population for a clinical trial is all the people the test or treatment is designed to help.

Protocol

A plan or set of steps that defines how something will be done. Before carrying out a research study, for example, the research protocol sets out what question is to be answered and how information will be collected and analysed.

Randomized Controlled Trial (RCT)

A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group has the intervention being tested; the other (the comparison or control group) has an alternative intervention, a placebo, or no intervention at all. Participants are assigned to different groups without taking any similarities or differences between them into account. For example, it could involve using a computer-generated random sequence. RCTs are considered the most unbiased way of assessing the outcome of an intervention because each individual has the same chance of having the intervention.

Reliability

The ability to get the same or similar result each time a study is repeated with a different population or group.

Sample

People in a study recruited from part of the study’s target population. If they are recruited in an unbiased way, the results from the sample can be generalised to the target population as a whole.

Subjects

In clinical trials, the people selected to take part are called subjects. The term applies to both those participants receiving the treatment being investigated and to those receiving a placebo or alternate treatment.

Trial Site

The location where trial-related activities are conducted.


References

The Canadian Institutes of Health Research (CIHR)

TROG Cancer Research

ICH.org

NICE

Further Resources

American Society of Clinical Oncology’s Cancer.Net trials site

National Cancer Institute (NCI) Clinical Trials lists open and closed cancer clinical trials sponsored or supported by NCI. 

ClinicalTrials.gov database of privately and publicly funded clinical studies

CenterWatch Clinical Trials Listing