Using technology to overcome fear and isolation
Belinda Berry
World Conference on Breast Cancer, Ottawa 26 - 31 July 1999
Introduction
I am really happy to be here today, in more ways than one!
I have long had a vision of combining technology with the good of the wider community, but until I had breast cancer, I had no idea how I was going to achieve this. Itís funny how things turn out! Here I am today, running two worldwide online support groups (Amazon Alternative Therapies Swallows Complementary Therapies mailing lists and web sites) and being a part of a global ëvirtualí community.
So today I am speaking from the perspective of a survivor, as someone who has travelled the path of diagnosis, treatment and recovery. And I am also speaking on behalf of the wonderful people online, who have shared their experiences, their support, their research and their love with me - I conducted a survey to gather information about use of the Internet for Online Support, and I will share some of those results with you.
It is almost inevitable that fear and uncertainty will surround a diagnosis of cancer, and it can so easily leave us feeling isolated. I want to share with you my enthusiasm and knowledge of using the Internet to get the information that we need in order to remove the fear and uncertainty and to connect us with people who can offer emotional support and friendship to overcome isolation . For me, technology, in the form of the Internet, has been one of the most important weapons which have helped me in my fight against breast cancer. It offers such a fantastic amount in the way of information and services. It is a weapon that the modern warrior can adapt to her own purpose.
On being an Amazon
Amazon n. member of the Amazon mailing list for
Alternative Therapies for Breast Cancer;
a brave and courageous woman
new definition
As you see, the Amazon were a fabulous race of female warriors, who chose to remove a breast in order to fight their battles. Today, many of us are faced with breast surgery in order to fight for our lives.
When I first heard about the Amazon, the image of being a warrior helped me to feel stronger and more confident in facing the reality of living with and beyond breast cancer.
But I need more than an image to help me cope. I need to be able to make informed choices about treatment. I need to understand to understand the disease and what I can do to reduce the risk of recurrence. I need to be able to connect to others who have had the similar experiences.
With my friends on the Amazon mailing list, I have used the Internet as the vehicle to get me to those essential sources of information and support. Armed with information and support, we can all become as brave and courageous as the Amazon.
So, when it came to thinking about the content and structure of my presentation, I decided that I could do no better than to use the analogy of the journey of an Amazon warrior to tell my story, about how and why I started using the Internet for Online Support, interleaved with information on what it has to offer and where I see it going.
The Amazon warrior ventures forth
Finding a ray of light and a shining sword
When I first found a lump in my breast, a little over 3 years ago, I realised how little I knew. When I heard the words ëitís malignantí, the normal confines of my world started to disintegrate. I had cancer! I found it almost impossible to hear what the consultant was saying to me. My mind was whirling. I could be dying! I'm sure he said all the 'right' things, but I couldn't take them in.
I had so much to learn - medical terminology, about the disease, about the treatment. It was all new and unfamiliar.
The books available at local shops and libraries on this topic were very limited, but in the Breast Health Handbook, amongst other useful information there was a single web address. I was already familiar with using the Internet through my work. Why hadnít I thought to look there!
That's how I began to use the Internet for information.
That first tentative step was rewarded by finding sources of inspiration (my ray of light) and information (my shining sword).
The site I first visited was the Breast Cancer Awareness Site
With courage I faced the dragon
My first decision - whether to have a lumpectomy + radiation, or a mastectomy, I made on entirely emotional grounds, and I chose breast conserving surgery. But with the pathology report, I was thrown back to square one. I had multi-focal lobular carcinoma, and the surgeon wanted me to have a mastectomy as well. This was no walk in the park, then. I had a dragon to face, and I needed the courage to make my own decisions. Whatever I chose, it was important to me that I felt right about it. I couldnít lose a breast because someone else thought it was the right thing for me to do. I was afraid, but I wasnít afraid to go online to find the information to support my decision. This is something that no one need be afraid to do - this really IS a walk in the park!
With courage we face the dragon
If I know the address (URL) for where I want to go, I can enter that into my web browser and go directly to it. But if not, I use search engines like Yahoo! and altavista. These provide a rapid way of getting to the content you are interested in, and the more specific you are with the key words, the better the results will match your query.
You need to be aware that there is no real control over the information available on the internet. Basically, anyone can put anything they want online, and it doesnít have to be true. So you need to be conscious of this. The best way I found to start with is to use the resources of national organisations, charities, and medical institutes, who do their best to provide information that is reliable, useful and relevant. As you explore more widely, be prepared to filter out the more dubious sources.
That being said, the Internet is a fantastic repository of information, a library of epic proportions, a shopping mall and a global meeting place all rolled in to one, with 24 hours availability. There is information of all kinds there. And information really is power. Receiving a diagnosis of cancer makes you feel like your life is out of control. You are confronted by experts who see hundreds of women (far too many) and to whom you are really just another case similar to lots of others. This experience is disempowering.
Information makes the difference between treating your doctors like judge and jury, with power to control and direct your life, to treating them more like the musicians in an orchestra, with you as conductor. As I gathered information, so I gained confidence to make my own decisions and to take back some control. As I took back control, so I was better able to cope with the realities of my situation, and to know that whatever happens, this is MY life, and I must live it my own way
Some useful sites for disease and treatment information
A multitude of rainbows gives us hope
I started to get interested in how I could help myself to regain my health. I explored the workings of the immune system, diet and nutrition, the mind-body connection. I read about and used holistic therapies, and I started finding people online discussing all these things.
So letís take a closer look at some more of the things which you can find online, the multitude of rainbows that bring colour into the darkness.
Later, I found that I wanted to know about breaking news and research. There is a great news service called BCN News, which you can subscribe to at http://www.breastcancer.net to receive daily or weekly bulletins
Using Medscape and Medline http://www.medline.com/, I was able to access abstracts of medical papers, and also to get information on how to understand a medical paper and how to interpret a pathology report.
If you are interested in alternative medicine, herbs and natural healing, there are many sites, which will help you to find out more about them. Having spent many hors researching these, I have gathered a lot of the links together into my own resources page on the Swallows web site.
Lots of the links on the Swallows site have been contributed by others that I have met online. Over time, I have built up a library of links and useful information on all manner of related topics - from environment and hormones to book lists and conference reports.
More recently, I have seen an increase in the number of interactive areas, where you can leave messages for doctors and other health care professionals, such as ëAsk Dr. Weilí and Bernie Siegelís page. Some of these areas have spawned very active forums to discuss topics raised online.
I like to visit Personal pages, with survivorsí own stories and interests. Often, people are becoming experts in their own disease, and gathering together the research information which their doctors are too busy to do.
Before I go on to describe online support
and what it has meant to me, I thought I would share with you some of the
comments I received from others through my survey. I have had a fantastic
response, and without exception they all recommend the use of the Internet
Wise women nourish our soul
We know that people do better with support, but what if you cannot get to a support group?
No matter how supportive your family and friends are, it is really difficult for them to understand what you are going through. The usual words of comfort are only reassuring up to a point, because you know that they donít know what is going to happen - and they canít answer the myriad of questions that go through your mind.
Our local area does have a breast cancer support group, but it meets only once a month. The more I found interesting information online, the more I needed to discuss it with others, so I started to explore the world of online support groups.
A mailing list makes it easy to send and receive messages to all list members. They are more accessible to a wider community than forums and chat rooms because they donít rely on remaining online for extended periods of time. For those of us who have to pay local phone charges, this keeps the cost down.
Mailing lists and forums will usually have an owner to look after them, and guidelines about content and ënetiquetteí. I run Amazon and Swallows on an entirely voluntary basis, and no-one leads the discussions, but we are beginning to see a very welcome development in online support groups being operated with professional counsellors too, and I am very keen to get feedback on how these are working in practice
The amazing women online have become my virtual support group, who have journeyed with me. We have shared our experiences and our research, our fears and concerns, our hopes and dreams, our joys and sorrows. We share jokes and humour too, because laughter is such good medicine, and we share completely non-fattening virtual treats!
I love the fact that my cyber friends are all over the world. The friendship and support are built over days and weeks of emails. It is the regularity that builds the rapport and the caring, that really makes a difference. Logging on and downloading your mail, reading and replying to them, is like popping in to visit a friend. Like that morning cup of coffee, it can become addictive!
When fears crowd your mind, how do you cope?
I remember a time when I was waiting for test results. I was frightened and alone. Other people donít know how why you canít just get on with things, and be well and happy. I had an upsetting conversation with someone and I wrote about this to the list. Within hours I had messages of love, supporting and sharing which restored my sense of self worth and put things into perspective. Their warmth and compassion have helped me to get through whatever is going on.
For many people a local group is just not a realistic option, whether because of geography, language, type or stage of cancer, treatment preferences or just because of being too tired or too busy to attend meetings. An online group meets their needs.
I have gained the confidence to follow my own path of healing and Iíve relished the exchange of information with other seekers of health and truth. But no matter what your approach to treatment, you can find a group that will be in tune with you.
With renewed strength we follow the path of the warrior
After my mastectomy, I chose not to use conventional adjuvant therapies, and focussed my attention on reducing or eliminating environmental risk factors, detoxifying the body, building the immune system and following a sensible diet and nutrition programme.
Last year I had a local recurrence, and opted to have radiotherapy and chemo. At that time, I set up the Swallows list for Complementary Therapies, to gather and share tips on how to ameliorate the side effects of those treatments.
But even when treatment is complete, the journey is not over. I am glad to be able to share what I have learned, and I keep learning from others.
We face the reality of death and dying together. Having people with advanced disease alongside those recently diagnosed can be a challenge, but we cannot shut the door on the reality that some of us will die of this disease. We learn from those who tread the path ahead of us, and in turn we are there to lighten their darkness with love and practical information to ease pain. Hard as it is, we are there as a carer tells of the difficult final days and then we share the tears as one of our sisters joins the angels.
We aim to help each other survive and thrive, and we have some exceptional examples of that - what joy to hear from someone diagnosed 3 years ago as stage IV, that she is now No Evidence of Disease (NED)!
We are there to help each of us discover the best way forward and to build on our knowledge. Armed with that knowledge, and a good set of questions, we can work with our healthcare professionals to establish a protocol that is right for us individually.
This is a journey shared and a story to be told and retold
As with all the fables of old, the stories of the modern Amazon warriors needs to be shared, and time and time again we are called to draw on our memories and tell our tales.
We can overcome the isolation by finding that we are not alone, and by being there for others.
We can meet each others needs - across the oceans, in cities and villages, we can touch each otherís hearts and lives and really make a difference
Through the mists we see the future
So what of the future?
No-one knows what the future holds for us individually, but with the explosion of use of the Internet, the use of online support is set to grow.
Already things have changed a lot in the last few years, with increases in the speed and capacity of computers, modems and the telecommunications network, and this is set to continue.
Greater use and more competition are driving down the cost of access, making it feasible for greater numbers of people to get online
Audio and video conferencing to support real time online meetings; maybe group meditation and visualisation, or the opportunity to see who is talking.
Desktop sharing could be used to update a document online in real time on your computer while sharing it with a friend, maybe for reviewing books and research papers, or perhaps for Art therapy.
We would like to see more full articles and books online, and more research information, but we donít want to drown in a sea of information, so we need smarter searches and personalised information.
Access to the Internet at drop-in centres, hospitals, clinics and doctorís offices, libraries, community centres and through webTV, will continue to widen the availability of internet resources.
As more groups get established online, so we can share resources and keep each other up to date, using common databases, and building a network of support in multiple languages. I expect to see an increase in the number professionally led support groups too.
The Amazon warrior ventures forth
And so we come to the end of my story,
armed with inspiration and information.
We are ready to face our dragons,
whatever they may be.
We know we can find wonderful resources
on the Internet to give us hope for the future.
We will be encouraged and fortified
by the support of others and we have the strength to make those
difficult decisions and face the realities of living with and beyond a
life threatening illness.
We know that we are not alone, and
there is an increasing need to share our wisdom.
The future offers even greater possibilities,
but the technology that we need is widely available now.
We must grasp the treasure and share
it with all those who need it
The treasure is for all to share
I have raised awareness of the possibilities of using the Internet as a weapon in our fight against breast cancer. I encourage you to participate. I believe that this is the way of the future, and that advances in technology are making online support a reality for all sorts of people. It is up to all of us to make this treasure available to everyone who needs it. Those confronting a diagnosis should be encouraged to use the Internet and facilities for them must be made widely available.
I challenge those of you
in a position to sponsor this technology to go ahead and make it possible.
To those of you who provide care and support, I urge you to make the Internet
an inclusive part of the services that you provide. And to those of you
who are warriors, I invite you to join me online and together we will face
the challenges on the path to healing.
©Belinda Berry, 1999