Once I was ‘enrolled’ in the cancer community and saw how little awareness there was about the issues facing people affected by cancer, I knew that I had to get involved to try and improve things. People like me needed help, although I wasn’t really sure what was available and what I needed when. The early times were a bit of a blur if I’m honest and staying alive was my first target, but as time passed I started looking around firstly for the things I needed, then what was around that might help others. In 2007, when it all began for me, services were very sparse, ‘cancer support’ seemed mainly to consist of books. Once I had received my pile of books on diagnosis, it seemed like everyone felt that the job was done. All the help I needed was at my fingertips, read the books and work it out in your own time! To be fair not long before that, there weren’t even many books, so I can see how that was considered as progress!
So my focus became to improve ‘cancer support,’ as it is known, but only recently have I appreciated the size of this task. Firstly we must define the word SUPPORT to understand things better, and here is a description that fits the bill, “to help someone and be kind to them when they are having a difficult time.” Everyone affected by cancer is having a difficult time, so now you can begin to see the issue when people require support. What do they require and when, are the key questions we must ask, and my experience has shown me clearly that the answer is different things at different times. Probably one of the best examples of this is the discussion we have on diagnosis. Logically that is the time to give a lot of information to help make crucial decisions for the future, but for many people they could be completely overwhelmed with the news, and be unable to take in a lot of what is communicated. What is good for one person is not for another.
As many more people survive cancer they are using their personal experiences to improve the lives of others, often creating innovative services, helping fill the current gaps that they themselves experienced. 
Since my own diagnosis I have seen the world of cancer support change beyond recognition, not just in terms of the physical services that exist now, but the way that the Internet helps us connect with services around the world. The support I needed initially was practical and financial, but as time has elapsed I have needed further help with adjusting to a life of ill health and being unable to work on a regular basis. So my requirements are forever changing with the uncertainty of my personal circumstances. If I had to make a ‘menu’ of services that would be helpful, it would be changing constantly with my needs.
Being on the frontline of cancer services, I see many incredible projects being started across the globe, which will certainly make the world a better place. Resources to help you through your illness, then help into survivorship. As we are learning more about the long term impact of our treatment we are finding new ways to help us live with that. But the reason for this post is that I have had several recent communications with people doing incredible work, that are struggling with sustainability issues. This is the harsh reality of the cancer support world that I see. People including myself see gaps in support that they feel they have the personal experience to help fill. They have a unique perspective on things which can add real value to what they do. However it takes much more than demand, to make these sort of things viable in the long term. It seems quite incredulous that there are services all over the country that people require, but only a minority even know of their existence. The people who need them don’t know they are there!
Even when services are run by mostly volunteers, there are costs somewhere, and it is very difficult to exist on donations and local fundraising in the long term. Goodwill and hard work will take you only so far, and as time goes on and more projects come to the fore it becomes more difficult to sustain services. Personal business experience has meant that I am able to keep my own services running, but despite the increasing demand I have had to avoid the temptation to expand and needing to rely on grants etc. What I see first hand is projects started with grants from charities etc, given support for a limited period of time then left to fend for themselves, as the next big thing comes along and everyone moves on. It takes more than money to make something sustainable, and for many projects it can take several years to become established.
There is so much goodwill out there, with many people wanting to help, but my feeling is there has to be some form of reality check. Currently we have services springing up, much duplicating or similar to, work that is already being done. Many of these projects, like my own, were started on an incredible emotional tide of wanting to give something back and help others after our own illness, which of course we don’t want to lose. Cancer support is improving because of this, and I admire everyone who is involved in providing a service after their own cancer experience. I believe it is time to look at how we can better help people find the services they need, which will in turn help service providers decide what service is truly required.
What support did you find particularly helpful? Is there a service that doesn’t get the publicity it should? What is the most innovative project you have seen? What service would you like to see that doesn’t currently exist? Please feel free to share your views and ideas and experiences as always.
Excellent post, Chris. Psychological and social supports are so important.
Thx Ashley. Those services are so important, but I fear that many don’t look at the longer term. There is little coordination in our sector. A lot of resource is taken to start a service, only for it to lack on going support, from users and financial. It is vital to have a long term strategy to ensure sustainability, so you can continue to help the people who need it.
So very true Chris – I hope you receive loads of response to the questions you have asked. We in the BKCC ask ourselves these all the time.
Thx Ken, I do too which is why I put it out there. We all have our own ideas of what is good support, but unless we clearly understand what people really need we could be wasting very precious resource. It is a particularly difficult area, as demands are constantly changing as new services evolve. Sometimes when you start a project, the focus needs to change after time, to ensure it is still relevant. I feel the real key is being able to adapt, and being open to change. Nothing is set in stone these days.
I’m newly diagnosed, still looking for support, still navigating my thoughts and emotions. It is so hard at times reading your blog gives me hope that I will be able to figure things out.
Liz
Hi Liz, so sorry to hear about your diagnosis, but welcome to the blog. I started the site as you say, “to try and figure things out.” The world I inhabit now is a very different one to my life before cancer. My thought was that this must be a similar experience for many, so let’s try and work through it together.
I like to use this site as a platform for us all to share and learn. Please let me know if there is anything that I might be able to help with, and wish you the very best, Chris
To us, cancer support means supporting the younger family members too, from diagnosis and for however long we’re needed – as you said, needs can change as the illness does!:)
Thank you! Sometimes the younger members of the family get forgotten, and what you do is so valuable to the community.
Thank you, Chris. Lots to think about. Kindness and patience so important as well as relevant, useful, accessible services and information. Continue to raise my profile steadily and long for it to be easier for people to find me when they need me. Word of mouth still seems to work best!! Best wishes to you and all those sharing sustaining kindness.
Thx Leah, yes kindness and patience are certainly two vital ingredients. Services like you offer are indeed the sort of thing I am talking about and more people should know about what you do! Thank you for what you do for the cancer community and I will continue to work to ensure that things will improve! Appreciate your support, Chris
Along with your excellent work Chris, I think there is a lot of potential in the new work Antony Nolan are developing in providing emotional and psychological support,messential for people like us living longer but with chronic health problems. However, there’s only some have work individuals on organisations in the voluntary sector can do for individuals. This is why a big focus of the work needs to be around lobbying government in campaigns to mainstream these services.
Hi Pavlos, I totally agree about the potential in the work that AN are doing. You are right too about the lobbying, but my feeling is that this process is far too long winded to see any real impact for people like us. I would like to see charities being more pro active themselves, and leading the way. If something is working the Government will certainly sit up and take notice! I hope all going positively for you Pavlos, and the very best to you, Chris