Each week is getting crazier and crazier! We seem to be swamped with very destructive news, which quite honestly I am fed up with hearing. The current state of cancer care and the NHS are my most important subjects. But there has been such a deluge of events in recent weeks even those seem to be well down the list for most people. Climate change and the behaviour of MPs seem to be currently dominating. However I’m sure next week there will be something else!
In recent months I have been privileged to be a guest on several international podcasts and videos. All very different and broadcast across the world. I was constantly asked what my two important pieces of advice would be, to give to newly diagnosed patients. So I thought that now would be a good time to talk about those.
Be a patient patient!
I was working in a very fast moving, and time critical business. Experiencing the NHS as a patient for the first time was a real shock to the system! If my company was late in delivering promised goods or services, we were fined. Hence time was, and still is, so important to me. Of course things happen, with every good intention, but I hate being late! It quickly became obvious that there were many reasons that the NHS may run late. Generally it did, and may mean hours of delay for me.
So instead of driving, and being held to ransom in an NHS car park, I went to hospital by public transport. I also knew that a one hour appointment could take two or three, allowing for late running etc. So I would give myself a complete morning or afternoon. We all lead busy lives, but I found I worked best without constantly looking at my watch. I was lucky that I wasn’t running a busy house or caring for someone. But I knew I had to focus on my health. A big part of which was my mental well-being.
It helps to understand that not all things work like the incredible Amazon Prime. Or ordering dinners from an app, with them being delivered ten minutes later. Public healthcare is definitely not like that all! Once you accept that, you’re halfway there. Ensure that you take something with you, to help you pass the time. Music, puzzles, a book etc, will help keep your mind focussed. Be aware also, that spending a long time in hospital may make your mind wander towards negative places.
Music was an incredible escape for me. I created many different playlists, depending on my mood. We have our mobiles where we can watch films or catch up with our social-media etc. Our time is so important of course, but please be patient with your team. It will benefit you in the long term!
Don’t compare yourself to others!
This applies to life in general really, but certainly within cancer. Even if you have the same disease and treatment as others, outcomes can be very different. We all start from very different levels of health ourselves. Many with co-morbidities, unknown to you. Some deal with treatment well, others not so. Progress slower or quicker it doesn’t matter, you are unique. Many have wonderful support at home, others don’t. With my treatment some survived and others didn’t. Who knows why these things happen but they do.
Strangely enough I found a hierarchy in areas. Some wanting to explain how bad their disease was, as if in a very strange competition. That still happens when I’m in clinic these days. Cancer can feel like a badge of honour to some! From my experience, healthcare is one big lottery. Of course you can do things that will give you a better chance in life. But in many cases you can encounter a difficult challenge, totally out of the blue. As was my case.
My life has changed dramatically since my diagnosis, and I am now a ‘professional’ cancer expert. Spending most days helping people and organisations across the world. We are now in the era when many people affected by cancer take to the Internet. Sharing their stories via blogs or social-media. This is not meant to be a competition, but many see it that way, incredibly. They worry they don’t have so many followers or their blogs don’t get read frequently.
People ask me how I developed a community. There is no shortcut, it’s hard work over many years, both online and travelling the world. Mine has become a job, but for many, this stage will only be temporary. In the real world we are not judged by likes and followers, but as a person. I mentioned we are all unique having different strong and weak points. So focus on being you, nobody else can do that!
These are two things I have found to really help me make the best of a bad situation. As a person I am now more relaxed than I was. I hope these bits of learning might help you too. If you also have any ideas you would like to share, please feel free to use the comments below, thank you!