Are you a proactive patient?

Are you a proactive patient?

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.

Are you a proactive patient 1

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.

Taking care of the world

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.  

 

 

The Grove Hotel Bournmouth

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. 

 

11 Comments
  1. Good blog Chris and struck some chords with me. Good point about some people simply not wanting to expose their issues and share their stories. I occasionally find myself getting angry at some of the negative sounding comments on forum sites etc but I always come back to the same conclusion you made in that the severe nature of cancer (both mentally and physically), it can drain people’s lives to the point that it becomes too difficult to engage. However, I would like to think that the inspiration provided by cancer bloggers such as yourself will spur people on. I changed my outlook about 12 months ago and feel better for it.

  2. Hi Ronny, thanks for your comments. You make some important points, and it is great that you were able to change your outlook, which can be very difficult to do. Sometimes the spiral seems only downward.

    Personally, I struggled massively with what was happening to me, and it has taken me a long time to accept all the things I have lost to cancer. However it gave me a greater resolve and focus, to ensure that I would do my best to try and improve things for people coming behind me.

    From giving many personal presentations I realised that that so many people were feeling the way I did. Social media provides me with the tools to reach out to many more, share experiences, and hopefully help one or two people smile. Your support to help me do that is much appreciated and I wish you well with all the wonderful work you are involved with. Chris

  3. I’ve seen people five in to the point of exhaustion, and those who feel the need to step away. One thing people wanting to give back might consider is supporting an already existing organization rather than starting their own. Starting your own is like starting a business – it can be wonderful, but it’ll also be really hard work. That is just one perspective, of course. ~Catherine

    • Hi Catherine, I have also seen both examples. Your suggestion about joining an existing organisation is a great one, and you are absolutely right, it is like starting a business! But the one major difference is that your own health is an issue before you start.

      In my own instance, I would have happily supported existing work, and do to a degree, but I believe that what I offer is not done well enough by other larger organisations. Also most of my business life was spent working for myself, and it is quite difficult to change that way of working now.

      At times it is frustrating when as a small organisation you struggle to find the support you know could make a difference, but we are concerned with people’s health most importantly, and that must always be the priority.

      Thank you also for helping to make a difference in this vast cancer community! Chris

  4. Hi Chris, I came across your article on Google + and for me also its struck some chords, although I have never personally been struck by cancer I have a very personal interest in the subject and what disappoints me most is the taboo nature of the disease from all corners of society, the fact is one in three of us will contract the disease in out lifetime, so cancer shouldn’t be something to shy away from, but something to educate people about, as its going to affect a hell of a lot of us… My interest in cancer care is also professional, I am a hypnotherapist and counselor and actual help people to relieve the emotional trauma following diagnosis and all the way through their cancer journey which has helped not only the cancer sufferer, but also their family carer. From my experiences I then devised a training program that I made available to other therapists called “Hypno-Chemo” and I have been very surprised at how unwilling therapists are to treat cancer patients, unless of course they have either had first hand experience of the disease or they find they have a friend or family member that is sadly diagnosed… I have now adapted the Hypno-Chemo program so it can be used directly by the cancer sufferer called Positive Cancer Carer, because it’s designed to be used by both sufferer and carer together. Both these programs are designed not to deal with cancer per say, but to assist with the emotional trauma of the condition… It’s due for launch very soon… if you wish to know more just go to: http://www.positivecancercarer.com

    • Hi Gary, thanks for getting in contact! I agree with many things you have mentioned above, and have a very open mind when it comes to tackling the issues around cancer. The reason I started this site and my other work on social media is because I believe that there has been so little improvement in cancer support by the current large organisations controlling that area.

      My view is that things need to change quickly and support must catch up with the facilities that are rapidly becoming available. I have found most organisations are closed to innovation, therefore patients like me are driving improvement.

      I see many therapists that are unable to use their skills, due to a high level of scepticism and here in England, hypnotherapists are considered ‘wacky,’ in the area of cancer. Having said that I now see a much wider use of reflexology and reiki for cancer patients, which is great progress!

      You have stirred my interest in your work, and I will indeed check out your site and be in contact. Chris

  5. Hi Chris. Great blog. I am now halfway through chemo for ovarian cancer. Whilst I need to put my energies into getting well, I do think it’s important to take control of what you can, and trying to improve your own, and ultimately others’ experiences. Ovarian cancer is often seen as the poor relation to breast cancer. Consequently funding and awareness far less. I am.passionate about raising awareness and am pleased to be part of research at imperial college trust aiming to develop more accurate screening. As a gay woman it’s vital that all services are inclusive. I’ve experienced horrendously bad questioning over the “is there any possibility you pregnant” question in the past but for my surgery and chemo it simply wasn’t an issue.
    Keep up the great work. You are inspiring. Take care x

  6. Hi Kay, welcome to our community! Thank you so much for sharing your own experience. I try to encourage people to share with others, so that we can all learn and help each other.

    You are so right about how ovarian cancer is perceived, and unfortunately, there is becoming a hierarchy in cancer, mainly brought about by large organisations and marketing teams. It is brilliant that you have decided to contribute to try and improve things, when you are able.

    Your point about the gay issue is indeed important of course, and I am seeing a slow but at least positive improvement in that area. There are many charities looking at that specific thing. Indeed it is an issue I will be writing about soon!

    Your comments are much appreciated. I wanted a site where people affected by cancer can raise ‘real’ issues in language that we all understand. I like to talk about things that rarely get discussed by health organisations, who like to keep things a bit more ‘vanilla.’ I wish you well with everything you have going on, please tell your friends about us, and I look forward to welcoming you back soon, Chris

  7. I definitely think the inspiration you provide spurs people on and you are helping and reaching out to so many people, so thank you! Judy

  8. Thanks so much Judy, your comments and support are much valued! Chris

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