Sharing a cancer experience

Having been unwell for most of December, and early January, I made a deliberate plan to not chase any more commitments for the new year. I had cleared my diary, and had completed my work. Although I had few speaking engagements on the horizon, my blogging and social media work, quite quickly fill up the gaps in between my treatment sessions, so there is always plenty to do. I wanted to give myself some time to think about the coming year.

However, my speaking engagements are really what helps my work come alive, and makes my blogging etc feel real. It is an opportunity to hear other peoples experiences, who, through me sharing my story, have felt able to talk about their own. I have been doing presentations for many years now, and the beauty for me is that each one is unique. I talk to health professionals, and patients young and old, also at fund raising and business functions. From every presentation I give, I learn something new.

This week I had the pleasure of sharing my experience, with a large group of interns, coming to work for a UK cancer charity.For many of them, it was their first ever in depth look at the effects of cancer on someones life. Although, it is never safe to assume that even with a young audience, there is no one who has a personal or family experience. That has happened to me several times.

After this particular presentation I had time to think about things, as I went straight to a session of treatment.The audience was very receptive and enthusiastic, and many spoke on Twitter about how they had learnt a lot from it, which is great.However my thoughts turned to the frequency with which I share experience and information about cancer.I now speak or write about it, daily. Not only that, I am in a cancer environment for 5 days every month, having treatment, during which time I am talking to both professionals and patients.

I am aware that I have become 'comfortable' talking about almost any aspect of the disease. However, what struck me this time, was that people may not be so comfortable listening to certain things. What has become 'normal' for me, is far from normal for most people. Obviously, if you attend a presentation where someone is talking about cancer, to a degree you know what you are going to get. Also, if you don't like the content, you won't read a blog. But I was thinking also about my social life.

Maybe people don't want to know some of the content, that I tell them? Most will not be used to hearing some of the detail. My natural way of communicating is to tell people the facts. My thinking behind that was to help people understand what was happening.

Sharing something like a cancer experience, is a very personal thing. Some people don't do it at all, not even with their partners! Others keep things within the 'friend and family network.' Some like me share most things, and more. I happen to feel that talking about these things publicly, will help raise awareness of the issues, and improve things for the next generation, but not everyone would agree. 

Blogging has become one of the most popular ways of sharing experience. Even in the two years I have been writing I have noticed, a vast difference in the quantity, and detail of what people share. It has become much more acceptable to share very intimate details of treatment and emotions. But of course, in this instance you have a choice, whether you follow a particular blogger or not, if you like that open style of communication. 

Face to face work is very different. But in many respects I find it easier. I can generally feel a mood in a room, and by looking at peoples body language as I speak, I am able to tailor the talk to suit, the audience. But one of the biggest hurdles to overcome in a group situation is that many people are still uncomfortable talking in public. Always when a talk gets opened up to questions there is normally a slight hesitancy from the audience.Afterwards though, many people want to talk!

The beauty of the platforms available on social media,is that people can take as much or as little as they require.They can stay anonymous if preferred, or go public if comfortable. They don't have to enter a situation where they feel uncomfortable. It is important, psychologically, to share things, even if it is only with people on the Internet. We never stop learning, and for me, hearing other peoples stories, really helps me to make sense of my own. If I can do the same for others, I will be a happy man! 

Do you find it easy to share your experience? Is it of benefit to hear from others about theirs? How important is the internet, in how you give and receive support? 

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The joy of sharing experiences

It is logical of course, but how good does it feel when you are able to talk to someone who has experienced very similar issues to yourself? Sure, it doesn't change your own situation, but you certainly feel a lot more comfortable knowing that the person you are communicating with really 'gets' what you are talking about.

Our passions are raised, when we are talking about football, music, cars, women, men, politics or religion, with like minded people.We can really bare our souls to them, because we know that they really understand and share our emotions.I know when talking on some of the previously mentioned subjects, I can talk for ever, with passion, if I know that we are sharing common ground.

What about when we have been ill? Sharing experiences is somehow very therapeutic. I don't know why that is! It doesn't make anyone feel better physically. It doesn't change your prognosis, yet communicating with someone who has similar experiences to you makes you feel a bit better about things.I know it does, I have the proof! It certainly works for me, and I know from my blogging and personal work which I am involved with, it works for others.

The reason, I have concluded, is that people truly understand the issues, you face, as they share them. You don't have to waste time explaining things, as they understand immediately. They are not just being polite, and they also are truly grateful to be able to share their problems, with a 'brother in arms.'



So how does the 'cancer thing' work then? Most of us are lucky enough to have family and friends around for support when we need it.We are certainly very grateful for that. We have nurses, doctors etc for when we are unwell, and even counsellors if things get very tough.But unless they have similar experience, how can they understand.Put simply, it would be like me talking to a pregnant lady about the issues surrounding childbirth. I could certainly have sympathy with everything involved, but I couldn't pretend to understand what she was going through.

Since my illness I have spent a lot of time establishing the most effective means of communication, in the 'cancer world' When I started my quest, I firmly believed that there was no substitute for 'eye to eye' contact.But I realised that it was difficult to reach many people with that method. Then I started using social media, and the world became my oyster. Now people are communicating with each other around the world, sharing experiences and knowledge.

In the last few weeks I have been able to communicate with many wonderful people, all comfortable with sharing their unique experiences with me, and me with them.None of this would be possible with out social media being the 'conduit' that we needed.But the key to the 'comfortable' communication is our 'common bond' Patients are linking with doctors and support services, almost organically.

All this has made me think, about our large health institutions, particularly the N.H.S. They do what they do, really well on the whole, but I am trying to imagine if I went to them and said

 "I have a good idea. I think we should let everyone communicate with each other and start forming their own support groups. We can do this across the world, and anyone can join in!"

Can you imagine what the answer would be? It would certainly include Health and Safety, Risk Assessment, and confidentiality issues. If we were lucky we would just about have formed a focus group to look into it!

In all seriousness I really do understand all the issues involved in social media and health care, but from what I have experienced in the last few years, is that the patient has many more alternative areas of support now, and is creating some answers themselves.I also appreciate that it cannot replace personal contact, but is a fantastic way to share experiences, both near and far. If you are lucky enough, you will get to meet, in 'real life' to enhance your 'virtual' relationship.

I consider myself very privileged to be a part of a growing online cancer community. We know it's not perfect, but it is a whole lot better than it was. It means that we can communicate with people that really do understand!