This post is dedicated to the incredible Sean O’ Brien RIP
I was asked recently what has been my most positive experience since nature enrolled me into the ‘cancer club.’ There was no hesitation with my reply which was, “the people!” From fellow patients, healthcare professionals and charity teams my life has been enriched by all the people I have met and continue to meet. Ultimately, we all want the same thing! To help people affected by cancer in some way. But what really has pleasantly surprised me is the online community that has developed. It is very strong and supportive, full of an incredible mix of experience.
There is a hardcore of people like me that have been involved for many years, and others joining daily. In recent times we have been joined by health and charity professionals, also sharing their experience and resources. It doesn’t only exist to support each other but also to tell the cancer powers that be what we need. Not just accept what they all decide is right for us. During the last few months more patients are sharing their struggles about receiving treatment during Covid times. We came up with the #PatientsTogether tag and flooded Twitter for some time. Finally the issues have reached Government and mainstream media. Now everyone is aware of the issue we will be pushing for action, not just headline soundbites.
Our experience shows us how fragile life with cancer can be, and we have seen many of our incredible membership taken early by this awful disease. This week was a great example of that with the death of Sean O ‘Brien (@Oebs1) What an wonderful human being! He was very ill, but inspiring and encouraging us even whilst his own life was fading. He was celebrated loud and proud across social-media. Another special person you felt you knew well, but had just shared experiences with over time. His impact was massive across the world. A very gentle man with a wife and very young son.
The outpouring and sharing of emotions was amazing. But after a short space of time I noticed that several people had found it too much for them and decided to come off Twitter temporarily. Then later I received a message from someone who had received some positive news re their cancer but felt guilty sharing it and I’m so pleased they did! Good news is what we all live for, particularly those of us with cancer. We all celebrate for each other and I know if Sean had known he would be the first to start celebrating.
The ‘rules’ in our community are very few and unwritten. We all express ourselves in the way that works for us. The nature of the ‘cancer beast’ is that regularly we will be celebrating AND crying, with the good and bad news we are constantly receiving. Our days are full of highs and lows, and I know that I can feel personally drained after watching situations play out on social-media. But I have been doing this for many years and I find Twitter is a great tool of engagement. Giving very up to the minute news that you can interact with quickly. I use it a great deal.
But it might not be good for everyone. We all handle information differently, for some it is positive but for others not. So I totally understand when people feel it is getting too much for them. There is an off button for a reason. Also we all share different things and quantities. Personally I always ask “does the world need to know this,” before I press send? My sole purpose on social-media is to help people, and share my experiences and opinions. Once that stops happening I will be gone!
Acceptance and respect are very important! Everyone has an opinion, which may not be the same as yours. They are entitled to speak as much as you. Treat everyone with the respect you would like to receive. Accept people all have different experiences, which help to form their opinions. No matter how well you think you know someone, there are always things you don’t know, and never make assumptions!
The cancer community is a very open and welcoming one, but you will see everything, ‘warts and all.’ That is not for everyone all the time, I certainly get that! But the last thing we need is people not sharing their good news. It’s other people’s good news that gives us all hope we will be getting some ourselves. This is a very fine line to be drawn, but I have always believed that honesty is the best policy. We should tell it as it really is! For those that might be feeling a little raw for that approach, many of the cancer charities run chats which are facilitated. Please don’t ever feel guilty for sharing good news, we certainly need more of that at the moment!
As always these are my views and opinions based on personal experience. If you would like to share your own please feel free to comment below, thank you! Please take a few minutes to watch Sean in his recent interview with the BBC.