Firstly, I would like to say that it is not me asking the above question! This came from one of my followers on Twitter, and it got me thinking. The reason that tweet had been sent, was they had found that since they were in remission, and treatment had finished, the amount of followers they had was rapidly decreasing.
They had very quickly put the two things together and made that assumption. That then made me wonder, and I looked at my own life since cancer, and many other people that I know, both personally, and via social media.
In several of my previous posts, particularly 'my name is not cancer,' I have talked about the fact that whether we like it or not, we tend to be seen as that person with cancer, rather than the person you were before. Personally I have got used to that now, but I know that people who have little experience of what we go through, have a quiet fascination to know more. I guess also, that in many ways we encourage that curiosity, by the awareness raising that we do. Also, if no one asked about things, we may just assume they weren't interested!
I wasn't using social media from the start of my journey, so I have no direct comparison, but an example that is valid, would be my fundraising . I started raising funds after my stem-cell transplant. There was a fantastic wave of enthusiasm by people to donate. As time moved on, that waned, and raising money became more difficult. Along the way, I have been seriously ill on numerous occasions and the donations have increased. Now, only currently having maintenance treatment regularly, and after 6 years, it is a lot more difficult to raise enthusiasm.
Is it then, our use of social media that gives us a 'slanted' vision of how people view us? A lot of people tend to judge their own popularity, by the quantity , and coming and going of followers. Personally I don't. I have always tried to have fun, and make people smile. That hasn't changed since my diagnosis. What has changed, is that I now use social media!
However, when I review my own journey, since diagnosis many interesting things have occurred, both good and bad. Since, and because of my illness, some incredible things have happened for me, and I have met people, and done things that I could only have dreamed about, in my life before cancer. There is talk in the future about a book. The ironic thing is, that there is little appetite for the first 50 years of my life, the most excitement, is about what happened after I was diagnosed!
Due to my cancer work I am now known around the world, through conferences and social media etc. Certainly that would never have happened in my previous life, but I would like to think that people enjoy what I do, rather than having an intrigue into my health issues. Or am I kidding myself?
Most of the patients that I know through here or personally, were quite happy getting on with their lives, until cancer came along. A lot of us enter the internet world, because we want to connect with like minded people, raise awareness and find out more information. We are passionate about what we do, and open our lives up to the world. This creates, in many cases, a swell of interest, generally temporary, short or longer term. Then our lives go back to a 'new normal.'
Life with cancer, creates many highs and lows, physically and mentally. It can be difficult dealing with the physical side of things alone. At times there is a lot of attention paid to you because of your condition, not only from the medical profession. If there is a positive conclusion for you after treatment, it can be extremely difficult, psychologically, to return to everyday life. Maybe, without a lot of the attention that we were used to.
This year I will be talking at more conferences than ever before, only because of my illness. It is great that so many people are interested in things, and a valuable opportunity to raise awareness, but I would be doing none of this if I hadn't got sick. Certainly my phone never rang with so many interesting people.
In my own case, I will never be far from this terrible disease, so this is part of my 'new life,' but I can empathise with people who might question, where all the people go, when they get better.
What is your view? How has your life changed? Is this an issue you have even thought about? I look forward to hearing from you.
You will always find me on Twitter @christheeagle1
Several blogs ago I mentioned that my diary was mostly empty and I was enjoying it that way. My major professional engagements were successfully completed, and it was now time to review my strategy for the rest of the year.Emails and phone calls then came along, with some varied and exciting opportunities, which set my juices flowing, so I am back in the game!
I have chosen today's subject, as a lot of the opportunities that are coming around for me,are linked in some way to my blog. Many more people are aware of what I do now, because of the power of the internet. It is such an effective method of communication. Anyone who wants to know my story, or what I am currently working on, just has to check it out via the blog. It saves me so much time, phoning or mailing people.It also means that people can do things when it is convenient to them.
My blog was started just over a year ago. I needed an internet platform for people to find me when my tv programme was broadcast. I didn't know what to write or who my audience was. It was just a focal point for anyone who was interested.But today the picture is very different.There is now an audience, and demand for a certain style of content. The audience expects high quality and interesting content. All this for free!
Bloggers get wound up by lack of comments, but do we comment when we read a newspaper? There is plenty of area for thought, but generally we move on to the next unrelated article, having consumed that one.Also, more of us are reading from smart phones and tablets on the go, which is not conducive to writing comments, even if we are thinking them.
More than 5 years ago, when I started working to raise awareness, of the psychological and emotional issues of cancer, social media was in it's infancy in the health sector.Facebook, was busy, with people's holiday pics, but nothing much else, and Twitter was starting to be used by celebrities as a method of promoting their work. It appeared that blogging was for 'would be' authors, who wanted to dip their toe in the water, and test their work, with very little expense.
How things have changed in such a relatively short space of time! Obviously the subject of cancer is a niche market, but you would not think that. If you look around the internet thoroughly, you can find information on virtually anything. It seems like people are embracing the freedom that they find in social media.When I started writing, I felt that an open and honest blog was what was required to encourage people to think about their own issues differently.I now find so many people are opening up about their illness in such an intimate style, that at times I feel like a family member!
Reading other peoples stories is very powerful, and people can find a sense of release, when writing their own.The slightly unseen, and so far relatively untapped benefit, is when the professionals get involved. Patient blogs are a wonderful tool of understanding how cancer and it's treatment, affects people in their lives, and I feel that many health professionals lack even a basic understanding of social media, and there is still a feeling that it is not valid in their work.
However there are clinicians and other professionals around the world who are fully engaged in social media. They blog, they tweet and run websites. Happy to share with the knowledgeable and the less so. It is quite obvious from what they write that they are all well informed, regarding patient blogs.These are such a rich vein of information, and much more interesting than books.Everyone has a unique way of communicating their experiences and emotions, and dealing with the highs and lows that occur during ill health.
I don't think I can claim credit for the revolution in health blogging, but I am certainly proud to be a part of it. There is never a day goes past where I don't read somebody's blog.I feel I know those people so well even though in 'real life' we have never met.Social media generally, is a very powerful glue, binding like minds together, and helps forming strong bonds, enabling you to deal with difficult times slightly more easily.
In recent weeks I have been shocked by the demise of several members of my 'community.' Mostly, young people, taken by bowel cancer. #never2young Truly terrible. The thing I find so powerful is that all of them were so open and honest about their situation and shared a lot willingly, with everyone.This is a massive change to how things were with cancer even just 10 years ago, when people rarely dared to even mention the word.
It feels very perverse, to say that things have progressed when we now talk openly about death on social media. My view is that we can't deal with something properly until we understand it, and by talking about things, hopefully we can learn more. There is a lot more to come from blogging, so watch this space!
I would like to dedicate this post to the brave young lady that is #katiescarborough Katie has just written, what may possibly be her final post entitled 'a brick wall.' I have never read such an incredibly brave piece, and I remain in awe of this young lady and her family. My thoughts are with you all. This sums up the power that can be generated through a blog.
We all lead busy lives, and it is impossible to fully dissect all the information that we get given, either by word of mouth or written. With the explosion of social media, smart phones and tablets, we are being bombarded by videos, tweets, Facebook messages, blog posts, advertising etc. It is getting, 'noisy' out there! We are now choosing to open our lives up further, as many people are on their phones, tablets,etc, as soon as they wake up till going to bed.
Almost in every venue now, it has become accepted that people are fiddling with their phones, checking emails or social media etc. Even our children are following in our footsteps, being glued to their phones wherever they go. Our brain is busy, with all the random stuff it is dealing with. How can we truly read and understand everything we look at, we can't! We don't have time or capacity. We become selective about what we do. We may choose to 'follow' people, but even then, we select what we want to read.
So, we have now scrambled our brain with technological stuff, what about face to face communication? Ah, 'that's different,' I hear you say. In many ways it is, as you can see body language and eye contact, which lets us know how people are reacting to our conversation, but I wonder, if our brain, is starting to deal with conversation, as it deals with social media et al, by being selective?
We know that we all understand things differently, but my theory is that we all hear things differently. My wife and I joke about 'selective hearing,' but I really believe that this exists.When you put this into a serious situation context, you can start understanding the problems.The example I would like to use, is for those of us that have received a cancer diagnosis.
I don't know about you, but other than hearing the word cancer, I didn't really take a lot of the rest of the conversation in. Luckily, my wife was with me when I was given the news, and she digested the information much better than me.From then on, we discussed the conversation. She heard bits I didn't, and vice verse. Strangely, I never really took in the bad stuff. Was that because my brain chose to ignore it? I think it was. Maybe that was my coping strategy?
As my regular readers know, my disease, (Mantle Cell Lymphoma) is quite rare, and other than in my own clinic, I have never actually met anyone else who has it. This week I did, and we had a fabulous conversation. Neither of us could really believe it. Our stories were similar in many respects, but we both had a slightly different understanding of things. We had both been given information and we made what we could of it. We added more over time, and came up with our own answers.
Personally, I like to know as much as I can about my own health issues. I feel I can then make better decisions. But if I am not using all the information correctly, maybe I am not making the right ones. Other people prefer very little knowledge. Maybe in this instance ignorance is bliss!
Certainly, information, is available everywhere, which shows a vast improvement in the cancer sector, over recent years.However there is still an issue, about how we all understand it. If we are all selective in what we read, then we will have very different ideas about our disease and treatment.If we then have a discussion with the Consultant, and we are only listening to parts of what we are told, you can understand how we get confused and frightened.
I am an eager participant in all things 'social media' but I don't work. I probably have more time than most, to study it, but there are times when even I go blank, from reading tweets, blogs, etc. All interesting and relating to my hobbies, but it seems my brain is overloaded. There is a possibility that I miss important things in my quest to keep up. That seems to be the difficulty these days in all forms of communication, being able to prioritise what is really important!
