Tag: chris lewis

This month’s social spotlight is shining on Siobhán Freeney – a tireless advocate for lobular breast cancer and the associated breast cancer risk with breast density. 

Hi Siobhán, I’d like to start off by asking you to share with us your path to patient advocacy. What set you on this path?

SF: I was diagnosed with Stage 3C Invasive Lobular Breast Cancer in December 2015. I really struggled with my diagnosis because I had no family history of breast cancer. I’m very Breast Cervical Screening aware – always attended for my mammograms and only had a clear mammogram 5 months earlier.  I noticed that my right nipple was inverting ever so slightly and requested an immediate referral from my GP. My diagnosis was immediate following a Triple assessment.  There was no ambiguity about a forthcoming mastectomy, which would follow after four months of dose-dense chemotherapy.

I have always had an inquisitive mind and so when I was told by the Breast Nurse not to Google, that’s exactly what I didn’t do!!! I quickly discovered there was a lack of information about Lobular Breast Cancer. Thankfully this has improved, mainly due to Patient Advocacy Groups who have begun to engage with researchers and clinicians in raising awareness.

Around the same time I was diagnosed, I came across an article on Breast Density.  I was completely blown away by the statistics on associated breast cancer screening risks from AreYouDense.com and the wonderful woman who started the Grassroots Breast Density Advocacy Group in the USA, Nancy Cappello.

And then you set about educating women in Ireland, where you live?

SF: Yes, I set up www.beingdense.com in Feb 2016.  The purpose was to inform (Irish women in particular) women, about the Breast Cancer risks associated with having Dense Breasts.

1. Breast Density is an independent risk factor for developing breast cancer. Women with the densest Breasts are four to six times more likely to develop breast cancer.
2. Mammograms are less likely to find early breast cancers in dense breasts. Mammograms miss 50% of breast cancers in the densest breasts.

It is not palpable and has nothing to do with size or shape.  Mammographic breast density is considered to be a woman’s personal biomarker for cancer and can only be determined by a mammogram.

Related Reading: Breast Cancer Survivor Knew Something Was Wrong WIth Diagnosis

How is breast density assessed?

SF: The radiologist who reads your mammogram can easily see how dense you are.

Breast Density is assessed using 4 levels

A             Mostly Fatty

B             Scattered Fibro glandular

C             Heterogeneously Dense

D             Extremely Dense

In the UK and Ireland, women are NOT routinely notified when their mammogram determines that they have dense breasts.

That lack of awareness must have shocked you. Is that when you started using social media to raise awareness?

SF: Yes. I began sharing research links and building awareness on FaceBook initially  at https://www.facebook.com/breastdensityreporting/

In retrospect, I was quite sheepish about patient advocacy at first, I didn’t want to upset the status quo too much.  I’ve learned that education and knowledge are the foundation blocks for change and great advances never come from comfort zones.

That’s so true! Your website Being Dense is now well-established as Irelan’s breast density awareness and education site. What other things have you achieved since setting up the site?

SF: In 2019 we co-hosted with Breast Predict, the first-ever mammographic breast density seminar in The Royal College Of Surgeons.  This year I took part in the Marie Keating Foundation #NotJustPink Campaign for October. Last February I spoke at a favourite event of mine, Choirs For Cancer in UCD, organised by Precision Oncology Ireland.

I’m a founder member of Lobular Ireland www.LobularIreland.com  This has been a real passion of mine.  Invasive Lobular Breast Cancer is the sixth most diagnosed cancer in women and the second most common subtype of breast cancer.  Lobular Ireland is a growing advocacy, interacting with researchers, clinicians and breast cancer organisations.  Lobular is my subtype of breast cancer and I’m keenly aware of the lack of research that has been carried out until very recently.  Patient advocates have proven to be a powerful tool in raising awareness and collectively can really bring change.

I was awarded a scholarship to travel to the 2^nd Lobular Breast Cancer Symposium in Pittsburgh, USA this year but Covid had other plans and unfortunately, the event is postponed until 2021.  Meanwhile, we engage and collaborate with the Lobular Breast Cancer Alliance.  At the end of September, Precision Oncology Ireland agreed to support Lobular Ireland and together we held a very successful webinar with the amazing ILC Expert, Professor Steffi Oesterreich from @UPMCHillmanCC.

I’m also involved in AIS Advocates in Science with Susan G Komen and participate as much as I can.  In my spare time, I studied with the IPPOSI Patient Training Program and graduated with 25 other like-minded advocates in November 2019.

Another platform I’m very involved in is the European Lobular Breast Cancer Consortium http://www.ELBCC.org.  I’m the Irish patient advocate to the Consortium. There are several European Countries involved with leading scientists, epidemiologists, pathologists, lobular researchers and patients working together to enhance awareness, improve screening methodologies, fund lobular specific clinical trials and treatment options for invasive lobular breast cancer.  I attended their 3^rd Annual meeting, in Leuven and we have just had our first virtual meeting.

You’re certainly kept busy with your advocacy work. When it comes to social media, which platforms do you like to use?

SF: I enjoy using both Facebook and Twitter.  I have a different following on each. I find FB great for patient advocacy support and building relationships with breast cancer community.  I try to spend about equal amounts of time on both.  I like to keep content fresh and interesting, evidence-based and factual.

It takes a lot of time to source and prepare content and make an effort to keep my breast density blog up to date too.  Methinks I spend too much time overall, but I would really like to keep the momentum going for as long as I can.

My popular Hashtags for #BCAM2020 October have been are #IAmDense #TellWomen #IAmLobular #LivingWithLobular and #NotJustPink with The Marie Keating Foundation. I’m currently trying to get my head around Instagram @aboutbreastdensity, it’s a work in progress. Can I give a shout out to #LitlleGoalsBigWins Barbara Croatto @bcroatto a wonderful Graphic Design Artist who has just designed a new Infographic for BeingDense.com. I love it thank you.

You certainly can Siobhán.  It’s a lot of work –  and of course unpaid work. Patient advocates like you really are the unsung heroes of healthcare.  Do you have time to take part in any Twitter chats on top of everything?

SF: I am so bad at participating in Twitter Chats, I always mean to make time and forward plan for them.  It’s an area I would like to work on.  There’s a lot to be gained from them, I know that from the ones I have taken part in.  I spend an awful lot of time as it is on social media though as it is.

Twitter chats are great but you are already doing so much! I think it’s important that we don’t feel we have to be everywhere at once. It’s easy to get overwhelmed with social media and all its tools and platforms. Do you have any advice for someone starting out with social media? 

SF: Be confident about your message.  Know your audience.  Keep it real.  Take it slowly and post relevant content.  It’s not a race to the finish, enjoy it.

I love that advice Siobhán – particularly the last part.  So, I like to end these interviews with a favorite quote or saying. Do you have one you’d like to share?

SF: I have so many quotes in my head – I love using them.

Here’s one from Maya Angelou, a strong independent woman, a woman of integrity, someone I have always admired, greatly.

‘Without courage, we cannot practice any other virtue with consistency.  We can’t be true, kind, merciful, generous or honest’

I love that quote and very apt – as I know you are a person of great courage, integrity and kindness. 

Thank you for taking the time to share your story and the role that social media plays in raising awareness of breast density and lobular cancer

SF: Marie – you’ve been such a support since I met you in 2018. You were the Guest Speaker and Moderator at an Irish Cancer Society Seminar in Dublin. Back then I would never have guessed that I would be here talking to you like this today, so thank you. You have created a uniquely positive platform for Patient Advocates. I truly value the relationships, advice and support that I’ve received from other amazing Advocates within your Weekly Round-Up of favourite Blogs on Twitter. 

I’m truly humbled by your words Siobhán. It’s been a pleasure and an honor to watch from the sidelines as you have grown your advocacy activities both on and offline. 

If you’d like to learn more about Siobhán’s work, visit her website http://www.beingdense.com Follow her on Twitter @breastdense.

This post is part of an ongoing conversation that explores how patient advocates, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here. 

I recently caught up with Sara Liyanage, author of Ticking Off Breast Cancer, a book about juggling a busy life with treatment for primary breast cancer. 

Sara is also the founder of www.tickingoffbreastcancer.com, a website dedicated to supporting those who don’t know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the breast cancer resources online and those just looking for a comfortable, safe, calm place to turn for help. The website provides practical advice for each step of the way, together with many signposts to other online resources and lots of personal stories.

Hi Sara,  I’d like to start off by asking you to tell us how you got started with social media. What prompted you to get involved?

SL: In 2017 following treatment for breast cancer, I set up a website (www.tickingoffbreastcancer.com) for people going through breast cancer treatment and those trying to move on after treatment. The website is a simple one: lots of practical tips and links to good online resources. There’s a lot of information across the internet that people – who in a vulnerable state due to their cancer diagnosis – aren’t finding or accessing because they are are either too nervous to research the web for resources and/or they are overwhelmed with what’s available. I aim to do the research so they don’t have to. I’m constantly updating the links to new information as and when I find it or I’m directed to it by people who I chat to on social media. I also publish a guest blog every week from either an expert (such as a lymphoedema specialist) or someone who is going through or has finished breast cancer treatment. In September last year my book was published (Ticking Off Breast Cancer). This accompanies the website by providing simple practical advice and also talks about my own personal experience of having treatment for breast cancer.

Was the launch of your website your first foray into social media? 

SL: I started using social media when I launched the website. I’d created a site that I was hoping would help people going through treatment, and I then needed to get this site out to those people. So I set up accounts on Twitter, Instagram and Facebook to help raise awareness of the website. I soon realised that using social media wasn’t just about raising awareness of my site – it was about becoming part of a cancer community and helping people that way. A lot of people turn to social media when going through cancer. There is a huge community of people providing help and support to those, whether by words of encouragement, sharing practical advice or providing tips for treatment. I found myself in this community and joined in.

I love the idea of social media being an extension of community – it’s something that resonates very strongly with my own work too.  Which social platforms do you most enjoy using to build community and share information? 

SL: I enjoy using all three platforms (Twitter, Instagram and Facebook) and I’ve found that they all work well in different ways. For example, Twitter is good for chatting about a topic and sharing tips and resources that I come across. Instagram is good for sharing personal updates and interacting with people on a more personal level. And Facebook works well for providing links to useful websites, articles and to things I post on my website.

Which particular topics most interest you online?

SL: I tend to focus on supporting people as they go through breast cancer treatment and try to move on once treatment ends. So I look out for good tips, advice and resources that would help someone in this position. For example, I share articles that I’ve come across that deal with treatment side effects; personal stories from people going through it; articles on exercise and nutrition; recipes; reviews of cancer books; information about support groups, networks and centres; and anything that might be of use to someone going through or finishing treatment.

Do you have any advice for patients using social media?

SL: On balance, social media can most definitely provide more support than discouragement, but for anyone dipping their toe (or whole body) into the social media cancer community it is worth remembering:

1. Use it carefully.
2. Don’t get too invested – dip in and out.
3. Be kind and understanding of others.
4. Don’t take anything too personally.
5. Don’t compare yourself to others.

And if you do all of this, you will hopefully benefit from what is, on the whole, an incredibly warm and supportive place to visit.

Great advice Sara. So, I like to end these interviews with a favorite quote or saying. Do you have one you’d like to share?

SL: Oh there are too many to choose from!! I love a good quote and I started each chapter in my book with a different quote that resonated with the subject matter of the chapter. I guess, I would say that one of my favourites is, “She stood in the storm, and when the wind did not blow her way – and surely it has not – she adjusted her sails.” Elizabeth Edwards.

I love that quote too. What a great note to end this interview on. Thanks so much Sara for taking the time to share your social media journey with us.

If you’d like to learn more about Sara’s work, visit her website www,tickingoffbreastcancer.com Follow her on FaceBook, Twitter and Instagram.

This post is part of an ongoing conversation that explores how patient advocates, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here. 

I’m delighted to kick off the 2020 series of Social Spotlight interviews with award-winning blogger, and founder of online cancer support community Let Life Happen, Barbara Jacoby.

Barbara has contributed her two-time breast cancer journey, patient advocacy mission and domestic abuse experience to multiple online publications that have touched readers worldwide.

Hi Barbara,  I’d like to start off by asking you to tell us how you got started with social media. What prompted you to get involved?

BJ:  When I was diagnosed with breast cancer for a second time in January 2008, my husband suggested that I put my thoughts and feelings on paper as my way of getting out my emotions. He promised that if I did, he would find a way to share my writing. True to his word, he created the Let Life Happen website that was named the same as the title song of a 15-song CD that he and I had created together in 2002 and he continues to handle all of the technical aspects for the site.

How wonderful to have that support and to have someone to share the success of your work. How has your mission and your site evolved over the years?

BJ: For more than 12 years, I have been writing a weekly blog as my central platform on my website. As I expanded my mission over the years, I added a daily “in the News” feature nearly 7 years ago and a “Clinical Trials” feature just 3 1/2 years ago And now I have been fortunate enough to have a “Paid Opportunities for Cancer Patients” feature on my site for 6 months as a result of the input received from other organizations who are striving to find such gigs for the patient and caregiver communities.

Twelve years is a long time in the social media world. You’ve seen many new social platforms emerge in that time. Which platform(s) do you enjoy using the most?

BJ: I have a great appreciation for all of them as each has a very distinct purpose. LinkedIn is the one where I have been able to best interact with other medical professionals and patient advocates. Twitter is the easiest way to get out a very concise message about something that I want to share. Facebook is of utmost importance for a number of private communities where information is shared among those dealing with similar issues. Intstagram has been a perfect place to provide a short inspirational message from a quote taken from my blogs. Pinterest has been a great place for the sharing of such things like hairstyles, beauty tips, recipes, etc. for those who are or have received treatment that has changed their physical appearance and needs.

Are there any social media that you consciously avoid?

BJ: I avoid everything audio for a couple of reasons. First, as a paralegal for a business unit in a large corporation, I have seen too many people sued for words that were spoken and were either misquoted or misinterpreted. As I do not have either a nonprofit or any other business entity for my work, I can’t afford to be sued as I don’t have the money to defend myself in even a frivolous lawsuit. Second, and perhaps more importantly, when I listen to someone else who is providing information, if I take notes, I miss all of the subsequent info while I am writing. And if I hear something of particular interest that I want to share further with others, my mind wanders off to thoughts of what to say and how to best present it. And third, I find it more difficult to record a presentation and then go back and listen and stop and start the recording over and over rather than to just be able to read something and deal with each point as I go.

Do you have any advice for those who are just getting started with social media?

BJ: Do your best to decide in advance your exact purpose for being on any social media platform, the audience that you want to reach and be flexible enough to change your course as needed as you go. Nothing is ever going to be perfect so just do the best that you can and your audience will know your heart from the work that you share with them.

What super advice  Barbara. I’d certainly agree with you on this. So, I like to end these interviews with a favorite quote or saying. Do you have one you’d like to share?

“If you can’t say anything nice, don’t say anything at all.” – Margaret Atwood

I love the age-old wisdom in that quote. Thanks so much Barbara for taking the time to share your social media journey with us and continued success to you.

If you’d like to learn more about Barbara’s work, visit her website www,letlifehappen.com and follow her on Twitter @letlifehappen

This post is part of an ongoing conversation that explores how patient advocates, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here. 

This week I caught up with psychotherapist, writer and radio host, Karin Sieger to learn more about how she uses social media in her work. 

I first met Karin online through our shared connection to breast cancer.  I  admire greatly Karin’s writing and her generosity in sharing her wisdom and advice to support people with life transitions, particularly the emotional impact of life-changing illnesses, such as cancer.

Hi Karin,  I’d like to start off by asking you to share something with us about your professional background and how you got started using social media.

KS: I am a psychotherapist and writer based in West London, UK, where I see clients privately and from where I also offer support globally online via Zoom and email. Prior to my training, I worked 20+ years in consumer and media research (including BBC World Service and AOL). I was first diagnosed with breast cancer in 2012 and diagnosed with a local recurrence in 2018. Since that experience a lot of what I do focuses on working with and supporting people affected by life changing illnesses, grief, anxiety, personal development and uncertainty. On many levels it has also become a watershed experience in my own life. I had to make choices about my wellbeing, future and finding purpose for the life I have. In many ways I have started finding my own voice creatively and that’s when and why my engagement with social media started.

How do you use social media in your work? Is social media the right fit for professionals in this space?

KS: At present, I use social media mostly as communication channels to share my motivational self-help articles, YouTube videos, radio programmes, quotes and raise awareness of projects I run myself, or that I am involved in. I am also using it to network.

Being on social media can be a challenge for counsellors or psychotherapists, as a lot of our training encourages us not to share our own experiences or private lives with clients. Because it may get in the way of the work and take the focus away from the client. For example, how do people who want to work with me feel about my own cancer experience? May they perhaps hold back from talking openly about their own concerns for fear of upsetting me? Things like that. I am always mindful to ask these questions at the outset, and assure people that I am ok doing what I do, despite my own experiences. In many ways I do what I do because of my own experiences. The impact of poor physical health (esp cancer) on our mental health is rarely covered in our training. I am trying to raise awareness and offer specialist support.

In our profession we have to keep boundaries and be clear about ethics. Therefore it took me a long time to take the plunge, and my activity online has evolved over the years and in many ways become more personal. I have to regularly check in with myself about it.

I really like how you’ve found that balance between your personal history and professional life. I know it’s a delicate balancing act – and not every professional can get it right. Of all the social networks we have available to us, which one do you use the most?

KS: Twitter was the first platform I used. In terms of frequency and volume, I use it most often. It’s familiar, I enjoy the interaction with the Twitter community and it’s easy to use. I have a professional (not private) presence on Facebook, LinkedIn and now also Instagram. I have tried Medium and others. But due to lack of time, I cannot keep it all going. A lot of my writing is reposted elsewhere online which creates more social media activity (via PositivelyPositive, The Mighty, Thrive Global, HuffPost).

While I enjoy social media, I also have to be careful how much and when I spend time on it.  Things have changed a lot since I have started using a scheduling software, source images via Pixabay or Unsplash and gradually use Canva to create ads for my radio programmes. Before I would literally do everything manually, with my own images. It’s not sustainable and started causing too much stress, which is just not healthy for me at this stage in my life.

I know from following you over the past 6 months, that you have a number of exciting new projects on the horizon. Can you tell us some more about them?

KS: I have launched a number of projects.

• #CreativeDespiteCancer which supports the creative efforts of people affected by cancer. I offer to feature anyone interested for free on my website and social media network (writers, artists etc). 
• #DearKarin is a free advice column I run on my website, where I offer support for a range of topics people are welcome to contact me with.
• Most recently I have started contributing weekly radio programmes for a new global online Mental Health radio station PeaceWithinRadio.com The programmes are recorded on my orange houseboat in the Thames and mostly unscripted. You can catch up with previous broadcast via my YouTube channel.
• #CancerAndYou is broadcast Wednesdays and offers support with the emotional and mental impact of cancer. Recent topics include cancer and relationships, why a cancer diagnosis is traumatic, cancer anger and more.  
• #SoulCravings is on Saturdays – 20 minutes of down to earth talk about a whole range of topics important to us all, like how to turn hopelessness into hope, coping with grief, how to think big and much more.

Wow. You have been busy! We both share the same interest in cancer, but are there any other topics you follow on Twitter. Do you take part in any Twitter chats?

I have not yet fully participated or run twitter chats. I am very impressed by #bccww, but since it is in the evenings, it’s too late for me. Cramming everything in alongside cancer treatment and earning a living is a fine balancing act.

As far as topics are concerned, cancer is important to me. But I don’t want to be pigeon-holed, as cancer is only one part of my life. That’s why (personally) I have stopped referring to my life as a cancer journey. I feel more comfortable with life journey. I am very much into nature, self-care, embrace difficult topics and generally love to think creatively.

I let you into a secret. My first tweet of the day now tends to get generated at 06:30, when I start my morning routine by lying on an infrared mat and listen to classical music. I look at online photo galleries until an image “speaks to me” and then I turn it into a quote for Twitter and Facebook, sometimes also LinkedIn and Instagram. Whatever I come up with may or may not also reveal something about me.

Oh I love that image of you waiting for the muse to strike first thing in the morning. What a creative way to approach things. Do you have any other advice for those who are just getting started with social media?

KS: Avoid impulse responses. Don’t take things personal. Don’t derive self value from social media.

Very wise words Karin. And speaking of wisdom, I like to end these interviews with a favourite quote or saying. Do you have one you’d like to share?

Whoever you are, wherever you are, whatever has happened, positive change is possible.

What a positive note to end on. Thanks so much for taking the time to share your social media journey with us Karin.

If you’d like to learn more about Karin’s work, visit her website www.karinsieger.com and follow her on Twitter @KarinSieger

This post is part of an ongoing conversation that explores how patients, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here. 

This week I caught up with Chris Lewis, patient activist extraordinaire.

Over a decade ago Chris was diagnosed with stage4 Mantle Cell Lymphoma (a rare blood cancer) and given six months to live. Aggressive chemotherapy followed plus a stem-cell transplant from an unrelated donor via the Anthony Nolan charity.

The next few years was a rollercoaster of hospital stays as Chris battled medical complications. He saw first-hand how disjointed the cancer support sector is and so he started to address the issues he found most concerning through his blog –  Chris’s Cancer Community.

This has become the most popular cancer blog in the UK and Chris is frequently invited to speak around the world about his experiences. Most recently, he has set up simPal, a unique charity that gives free phones and sim cards to anyone affected by cancer.

This is Chris’s social media story. 

Hi Chris,  I’d like to start off by asking you to tell us something about the role that social media plays in your work.

CL: I am the founder of Chris’s Cancer Community and Co- Founder of SimPal, the only charity in the world providing free mobiles and pre-paid simcards for people affected by cancer. None of this would have been possible without social media. My work is known across the globe and I do several international speaking trips every year. I am now the most influential cancer patient in the UK.

When did you start using social media – what prompted you to get started?

CL: My illness started in 2007, and I had absolutely no knowledge of social media. My health was unreliable and I was in and out of hospital. I began to see how poor support was for people living with cancer and wanted to know if it was only me who felt like that. I have a business background and started asking around. Friends of mine created a very simple blog to start with. My ‘community’ started to grow, my work was winning awards, and the rest as they say is history.

It’s wonderful to see how far you’ve come since those earliest beginnings. You now have a presence on several platforms, which is your favourite?

CL: No competition here, it is Twitter! I use Facebook and Instagram too but Twitter works best for me. Short and sharp engagement is key. I have a reasonable following which is continually growing. Although cancer is a big part of what I do, I like to mix things up a bit and speak on current issues, whatever they might be. Also my big love of football! I have been using social media for more than 7 years now, and wherever I am speaking in the world, there are people in the room who follow me, and that is a nice feeling!

Which topics hold your interest the most on social media?

CL: I am particularly interested in the subject of ‘patient engagement’ As a business guy I was shocked when entering the cancer sector, how little effort was put into this. It seems it was mostly box ticking. We are customers of the system, in whichever country you live. Rarely do we have and serious role in designing systems and tools to help us. I don’t know any business that does not talk to its ‘customers.’ Surely they are the most important part of your work? I used to do many twitter chats but as my work has exploded I have so little time to get involved. I find I must limit myself on social media or the entire day can be gone before you know it!

Do you have any advice for others who are just starting out with social media?

CL: Firstly establish what you want to achieve on social media! Many people are purely there because they feel they have to be. Ask yourself what does success look like for you? Most people are on there to ‘sell’ something, be it a product or a service, but just like in real life it is how it is done is the real key. Unless you listen and engage with others they won’t with you. Remember to listen more and speak less, that way you will learn quickly. Finally, we all started with no followers!!

Oh that’s so true Chris! 

So, I like to end these interviews by asking for a favorite quote. Do you have one you’d like to share with us now?

 I think kindness is my number one attribute in a human being. I’ll put it before any of the other things like courage or bravery of generosity or anything else. Kindness—that simple word. To be kind, it covers everything to my mind. If you’re kind that’s it.

― Raold Dahl                                                   

We sure could do with more kindness in the world – thank you for the reminder Chris! And thank you for taking the time to share your social media story with us. 

If you’d like to learn more about the global work that Chris is doing you can find more information at Chris’s Cancer Community and SimPal.

This post is part of an ongoing conversation that explores how patients, healthcare professionals, and researchers use social media to communicate their work. For more interviews, click here.