It is now 2 years since I started this particular regime of treatment, but with a combination of drugs and blood treatment, my body is able to help me have a reasonable quality of life. If I think back to when this issue started, I was unable to dress myself, or even cut my own dinner properly, and now thankfully I can do both! However it seems like at least another year before I will know if I can come off the treatment safely.
This uses up a large chunk of time and energy, but thankfully due to the advances in social media, I can keep in touch with people across the globe, to maintain my work, in raising awareness of the psychological and emotional issues of cancer. However, my preferred method of contact is in person, and this week I was able to do 2 presentations to very different audiences. I really enjoy sharing my experiences in large groups but the true effectiveness of what I do, is when speaking to people afterwards in a 'one to one' setting.
Many people are just not comfortable sharing their own thoughts in public, but are pleased to talk privately about their personal experiences. I felt extremely privileged on Friday, when I was talking in Durham at a large haematology conference. I managed to speak to so many people over lunch, and share views with them. Both professionals and patients were very keen to exchange ideas, and that is why I enjoy being able to meet people personally.
The previous day I was speaking in London to a group of policy makers for a large cancer charity. It was a fantastic opportunity for all of us to learn from each other. They were interested in my views about cancer support, and I was interested in how they worked.
In addition to the presentations, the Twitter bandwagon was still rolling, and people were sharing some of my recent blogs, and sending me their comments. It was great to receive 'real time' feedback from people who have just seen me speak too! Quite surreal at times. So on my long train journey back from Durham I had a lot of time for reflection on my week.
I have met so many different people this week, patients, professionals, and business people. All with a link to cancer, and with a passion to improve things. But things felt very different to when you normally first meet people. There was an immediate connection, no 'verbal jousting,' or trying to play 'one upmanship games.' A warm welcome was felt by all.
Every person, was doing what they could. There was no hierarchy either, everyone was communicating on the same level, be it policy maker or new patient. Of course we are all connected by cancer. This is the common theme. Some work in that field, and others of us have personal experience, but there was a feeling of togetherness. That same feeling is translated in social media. As most of you know, outside of this blog, my preferred medium for communication is Twitter. I have been lucky enough to be followed by a lot of new people recently, and with most of them, we are sharing quickly, our experiences and contacts.
In these days, it is easy to share, and by doing that, we can help improve things for others. This is the key to my work. What is the value of experience if not shared? Our lives are all touched by cancer, whether directly or indirectly. I was really moved a couple of weeks ago, when one of my football followers contacted me about my blog. He found it useful and shared the piece amongst his friends. This is just one example of people coming together in adversity.
A very recent demonstration of this, is what is currently happening in the Philippines. People from around the world are joining together, with a common cause, in adversity. We have seen many examples of this, but I do get slightly frustrated, when I wonder why does it take something like this to happen, to get us working together in this way?