In recent weeks I have had to cut back on a lot of my work, as my immune system was showing signs of creaking. Several infections and constant tiredness meant that yet again I would have to physically rest up to enable myself to re charge. This is nothing new, but is becoming more frequent, and very frustrating. As in my working life it seems I function much better when there is little time for thinking. Decisions seem to be made quickly and correctly, but with time to think things are very different. I sit and analyse things, weighing up the pros and cons and quickly become indecisive, the very opposite of what I have always been! So with plenty of thinking time, I started to look at the things I share on social media. Believe it or not, I am a very shy guy, and needed a lot of persuading to go onto social media in the first place, but I understood how it would help my work, and to that end it has been successful. My view was that I should be open and honest with what I share otherwise I felt there was no point. However I have noticed over the three years I have been writing, that I am much more relaxed about what I share, as it has become second nature to me. But I know that is not the same for all of us.
Social media gives us all a platform to share whatever we want, and in the early years we used it cautiously, mostly sharing family pictures amongst friends, but now people share their most intimate secrets with the world, without a second thought. The world of cancer has been changed dramatically by the way we can communicate and share experiences. We now have an information overload on disease and treatment, and can in many cases communicate directly with healthcare organisations and professionals. There are millions of people around the world blogging about their experiences, good and bad, meaning we can read about almost anything that we are likely to face. But having received so much ‘reality’ of other peoples cancer, I have been wondering if it was all a positive step.
Then two things happened last week, firstly I read the final blog from a brave lady Lisa Boncheck Adams, who died recently from breast cancer. I then received a message from one of my social media friends who had just read a blog from someone with the same disease as them and was upset to read what was happening. Both those things made me think more about my own contribution. Initially I thought of the television analogy, and said if people don’t want to hear from me then they won’t follow my work, but it is not as clear cut as that. Our blogs get shared around the world and are featured in many websites and health publications, so you may unintentially see something you don’t want to. The degree of detail that is now available can be very upsetting if you are not quite prepared for it.
My work has been driven by the many benefits I see. Cancer has shown me the skill of writing which I never realised I had, and given me a positive focus after it took so much from my life. I feel a lot better for sharing my experience, and I know from the feedback I receive that many people enjoy reading it. I have encouraged many others to write and we have a great community, sharing and helping each other along our bumpy road. Many people are learning from us sharing our experiences, not just our peers, but professionals too. However, I do wonder where it is all heading, can it all be getting too much?
In many areas of cancer and healthcare generally, there is still an awful lot to do in terms of raising awareness of many long term conditions, and how we can take responsibility for our own health and make certain lifestyle changes. Will the reality of reading about other peoples experience help us with our own, or make us more uncomfortable? Personally I am living the reality of my own cancer experience but am involved with thousands of others in one way or another, and it has become my way of life, and very little shocks me now. But I am also aware that it is very different for the casual user of the internet, what is reality for me, might truly shock others.
When I was introduced to the wonders of the internet, I felt I had a virtual freedom and dismissed those that advised caution, particularly in the healthcare sector. I was given wings and I was going to fly! But now I am beginning to see things from the other side Now the ‘jeanie is out of the bottle’ we can’t put him back, but I do wonder if we should consider more what we share, not from a personal perspective but from a possible readers. Generally we are so keen to share something with the world, we have little consideration for who may read it.
Of course it is our own decision what we choose to share or read, and it’s fantastic that the internet has given us that freedom, but I know the two instances I mentioned earlier will make me think a little differently about how I share some of my information. How much of your life do you share, and do you know your boundaries? Do you believe that all healthcare sharing is good? Have you ever reacted negatively to something you have read? As always please feel free to share your own thoughts below.
Great blog Chris, I’m very choosy with what I read. I do write a blog as you know but it’s upto every individual to choose if they want to read it. You have to take responsibility for yourself, I choose not to read most of the cancer related stuff on the Internet but I do find the research article positive so I do take note of these. This is my coping mechanism and works for me, I think everyone just needs to be aware of what they can digest and cope with. I’m not in denial at all, I’m aware of my situation but I choose not to let it rule me as much as I can. For all reading this be true to yourself, stay positive and enjoy today as no one knows what tomorrow will bring.
Thx so much Abi, glad you enjoyed the piece. As a blogger I have always been true to myself, but my first consideration is always my reader. I am always careful when I write, so that I avoid being too full of emotion after hospital visits and test results etc. However on the odd occasion I have written an emotional piece it generally is the one that gets the biggest reaction. But I write for the benefit of others, of course I enjoy it but am not really chasing readership and trying to be controversial. My aim is for others to learn from my experiences be it patients and professionals.
The point you make about everyone being aware of what they can cope with is a good one, but I think there are times we believe we are ready but after reading a piece may understand we weren’t. It is very much an individual thing of course and even after so many years on cancer social media, there are pieces that get me.
Thank you for the advice, I certainly also do my best to live to those rules too Abi. Much appreciate you sharing your views, and the very best to you as always, Chris xx
A Thought provoking Blog Chris on a subject I have long pondered over in relation to my own Blog. As you know I tend to write in a raw honest way but When I write I try to always consider the potential impact on others and if what I write does not feel instinctively right to publish I don’t. But is is a tricky one. It is so hard to assess what might cause difficulties for others and interestingly a few of my blog posts which I have been nervous about posting because of the content (I use Mr H as my tester when that happens), it is always those posts that seem to illicit the most positive feedback!
When I read others blogs if I see something that I find hard to read or is upsetting me then I stop and move on! I guess I have learnt how to protect myself but can imagine for others this may be hard to do.
Chris you do so much nurturing of others, take time to look after you and Mrs L xx
Thanks for sharing your thoughts Dawn. I think this subject came up because I have the time to sit and think about conversations I have had. When I first started writing my style was quite ‘neutral’ to test the water, but as I became more confident I got more ‘punchy’ and as you say, started to get more feedback. At the stage of winning the award I was writing quite openly and had developed a varied readership. I have decided not to change my style, but that will not stop me thinking three or four times before I publish a piece. I guess unlike many bloggers, I am not chasing readers wherever I can find them, I am sharing experiences with real people, and my first concern is always my reader. Thanks as always for your kind words Dawn!xx
As I have in the past, when going through open heart surgery write from theemotions you feel on that day…honest & descriptive is best from a cathartic point of view & a readers point of view xx
Hi Bev, writing is a very cathartic experience, and I think that is why we now have so many health bloggers etc. I hope it helped you when you were going through your issues. Personally I enjoy reading those type of blogs, and feel that I am prepared for what I might find.
Thanks so much for sharing your views and experiences. My best to you and yours as always, Chris xx
Dear Chris, just a short note….(it always starts that way!) in reply to your wonderful blogs, which I always find kind, thoughtful and inspiring! I so value discovering your weekly blog in my inbox! You have such a wide spectrum of interesting ideas and your approach is always so considerate towards the reader. This is one of my only really opportunities to think about my cancer and how it effects me and others. You have helped me enormously to not feel alone with this journey. We all have a choice of what we read or not. I did not know about Lisa or her blog before today and I have valued reading her story despite my own breast cancer diagnosis and the fears round my own mortality. I find it helpful to consider my own mortality as a means to thinking about what I am going to do with my life which may or not be short, who knows. It’s what we do with it what counts!
I love what Lisa wrote ‘Find a bit of beauty in the world today, share it. If you cannot find it create it. Some days this may be hard to do, persevere!
I am just deeply grateful to you for sharing your journey and your amazing work in helping others to understand the difficulties of cancer. It’s not a great ride most of the time but you shine a light of support that is genuine, compassionate and one that we can all learn and grow from.
Thank you Chris.
And please take care of your precious self.
Hi Tricia, glad to hear that you are enjoying my writing and that it stimulates you thinking about your own life. That has always been my intention, to help others consider the way they deal with things, and also to help people who don’t have a personal experience of cancer, understand what we might be going through.
Lisa’s blog was very moving, and I thought that despite the ultimate sadness there was much positivity that we could take from it. Of course you are right that we all have a choice, but there is a lot of really ‘heavy’ stuff out there and some people may not be in the right place when they read it. But overall the benefits are fantastic for us, and I will continue to use this method off communication for my work, as it has become the most effective.
No it is not a great ride as you say, but it is important people can understand that and it may help them prepare in some way. What good is experience if it isn’t shared? that is what I endeavour to do.
I am learning better now about how much rest I need and unfortunately, the reality is I need more, but I will continue to try and do what I can in between 🙂 Always a pleasure to hear from you and thanks for your sharing your support and enthusiasm! Chris xx
Hi Chris – please make sure you do put yourself first for once and take it easy for a while. Another very interesting blog but still think it is so beneficial for others to read your and others experiences. People do seem to share some very personal things, mainly outside the Cancer world, and many seemed to be attention seeking when they do. We all chat more by text or on FB than face to face so your blogs are so important & beneficial – take care.
Hi Ken, thx as always for your very insightful comments. I am having to rest more these days, which is disappointing but it is now taking me longer to recover, so trying to avoid complications if possible. I do believe it is beneficial to write and share experiences in the same way, But I think the point I was making was maybe more about the reader. That they need to be in the right place mentally before charging onto the internet to look up their condition. You are absolutely right that there is plenty attention seeking going on within social media! Health blogging has become an important part of support now, and certainly provides more positives than negatives, however I still consider things very carefully before I press the send button
Chris, you are doing a wonderful job, but take care and focus onlooking after yourself as well as helping others. Yes, there is a lot of stuff on on cancer in social media, but the point is that each individual has the CHOICE to read or not to read it.
Hi Pavlos, lovely as always to hear from you. Yes, my body is starting to find it tougher to recover now, and I am getting viruses more frequently, so I am doing my best to rest a lot. You are certainly right everyone does have a choice about what they read. But I feel a responsibility to my reader, and consider long and hard what I share with others. My work now is read by patients and professionals around the world, and large health organisations are happy to share it, which may not happen if I wrote in a different style. It is a very difficult balance sometimes I hope you are doing well yourself, Chris
Hi Chris, I thought you were going through what I call a ‘bad’ phase but have not been able to be in touch lately because of busy home life. You sound very low at the moment and it is only normal when the treatment you have been through for many years has now finished. Afraid I felt that for some time after finishing my treatment it was almost like having a bereavement. All I can say Chris and others who are going through the same phase it will pass……. You do such wonderful work Chris, just learn to pace yourself I know I don’t !!!. I too was very shy most of my life until I retired and now I never stop talking on social media like FB and I agree with Ken how important and beneficial your blogs are. Try and think only of yourself and your lovely wife for a short time and come back renewed and in better health. All our love to you Georgine xxx
Hi Georgine, it sounds positive that you have been busy! Yes it has been tough recently, and this was a subject I have had time to think about. I do know how valuable my work is, and I guess that is why I always consider things from the readers perspective. I am certainly finding I have to rest more these days, but doing my best to find time for some of the important meetings that I get invited to. Thanks as always for your caring comments, and hope you are doing well, Chris xx