As yet another week draws to a close, I have spoken to some very inspiring people, who are much earlier in their journey than me, but also want to ‘give something back’ for the wonderful help they have received during their treatment. They wanted to find out how to go about things, and what worked for me and what didn’t. I was also contacted by some smaller organisations who were struggling for regular support, and were asking my advice on things.
This got me thinking, about the vast numbers who are affected by cancer, and I know from what they tell me, that they want improvement in the general support area. If everyone of us could work together, things would change much quicker than they do. But it is not that simple for patients. Our overriding priority is our own health, of course! Just staying alive can be a struggle on it’s own without getting involved with trying to change a system that even governments struggle with (N.H.S)
Improving cancer support has become a crusade for me now, and has filled the void where my paid work once was. It is my area of expertise and after many years of learning in a practical environment, I now feel comfortable when talking to senior professionals in health organisations. I have been able to combine my business skills with my new experience, and it has the feel of a rather large project. But something I have willingly signed up for.
Regularly, I am contacted by people who feel as passionately as I do, due to their own experience, and want to ‘pick my brains’ on how to go about starting their own particular project. They want to know what has worked for me and what not, so that they can save time and avoid some of the issues I have found along the way. But something we all must learn is that although people may feel as passionately as we do about improving things, they may not be able to get too involved, due to many factors, including their own health.
I am starting to realise just how much energy I am using, doing the work I do. Constant battles with large organisations can wear you down and with health and age against me, maybe I should think again about how I use my time! But the most important thing I understand is that not everyone feels as strongly as I do, and can do things I can. Many people are just not comfortable talking/writing about their own experience, or even if they are, they don’t want to, and that is fine too!
If I am honest, I know very few people who are affected by cancer who are comfortable with sharing their story. For me and many in the social media community, it has become common for us to share personal details about our journey, but this is nor a reaction that comes naturally from most! Because we have become used to this way of working, we get tempted to think that everyone feels this way, and they don’t! Most people just want to get treated and move on with their lives the best way they can.
In recent months I have seen organisations, struggling to get active support from people, to help effect the change they know is required. I know from my own experience, that even to get people to share work on social media, can be tough, despite everyone’s best intentions. This is because people have their own issues, and my priorities are not others. Sometimes, timing is an issue, but ultimately, not everyone wants to be a proactive patient, and this is important for us who are, to understand.
My own work has many strands, but the major ones are writing and presenting to organisations. Although I am unpaid, my work is very similar to that of a professional. So I guess if you have a choice, why will you fill up your spare time, without money, unless it truly is your passion? Other like minded people are pleased to find me, but suffer early frustration with a lack of support for their project, and find it difficult to understand why not everyone sees their dream.
Due to the severe nature of the disease, and how much it can drain your life, I can see very easily why people cannot get too involved, in campaigning for improvements. But unfortunately, this is why in many areas, progress can seem so slow. As history shows us, nothing really happens unless people make it happen, and in this instance, as those people are sick, there will certainly be less appetite for ‘confrontation.’
For those reading this that feel they might like to support a particular cause, there are several ways you can, without becoming too involved. The easiest is to share things with friends. That is a really effective way of helping get information out there, via Twitter, Facebook etc. Also signing and sharing petitions can be really beneficial. That will take very little time and effort but will dramatically help the people running the campaigns.
There are many proactive patients out there doing wonderful things, but we can’t do it on our own, so any little support that can be given will be gratefully received. It is a natural thing for me to get involved where I see that things can be improved for others. Are you a patient that also likes to get involved, or do you feel unable to for any reason. Maybe you just want to get on with your life after cancer. Please feel free to share your thoughts and experience here.
I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions.