Despite the fact that I have no physical treatment planned for this year, I am still visiting hospital regularly to keep several side effects under control. Thankfully the cancer remains miraculously in remission, but as the years go on, complications are now developing due to the aggressive treatment I have had in the past. This week I had a very emotional meeting with the Consultant in charge of my recent three year period of blood treatment. It was a follow up appointment to see if it was continuing to work, and that my rejection disease had not returned. The treatment had solved my original problems, but unfortunately has left me with complications. However I had no choice really, and this was always a risk. I thanked the doctor and her team for giving me a reasonable quality of life again, and she thanked me for what I was doing! Big man as I am, I nearly cried. She explained that everyone was aware of my work, and thought it was great that a patient is so active in cancer support, and how much this was helping other patients. I thanked her for her kind words, and said “we all want the same thing!” She smiled as I explained that we both have different views of the same problem. We all want to make life better for people affected by cancer, using our very different experience. By the hospital being able to patch me up, I am then able to continue my work, and thus we have a very small team!
If only things were that simple in the cancer world. As we have said many times cancer affects us all uniquely, meaning that we all have different opinions about things. I have set about doing what I think is a positive thing to help improve life for others but it might not be suitable for everyone. People have their own ideas and visions and then set off on their own path, trying to help in their own way. Daily I see new organisations helping with different aspects of cancer support, some indeed where I hadn’t realised there was an issue! In many respects this is fantastic to have so many views of the problems we face. So much enthusiasm and energy being harnessed for the greater good. What is the problem with that I hear you ask? On the surface nothing, but when I think about sustainability and trying to coordinate these wonderful resources that is where the real issues lie. What cancer seems to be doing is dividing us, from politicians, clinicians, charities and health organisations to patients. We all have our own opinions based either on researched evidence or in most cases anecdotal, on what is required. There is a lot of fabulous work being done, but little of it coordinated.
Much of the incredible work currently being done in the cancer support arena is by people who themselves have been touched by cancer, giving them a greater insight into what is required. But there is very little signposting available to help people find these services. There is no A-Z of cancer support, no central directory to look in to find the help you need. Of course the larger healthcare organisations do that in a limited way, but rarely including smaller independent support services. Locally I know of work being done to try and sign post resources better, but this work is very hit and miss. With individual organisations starting daily, how could you keep up with the list even if one existed. Sustainability issues, meaning many cannot continue in the longer term and must reduce their offering.
I talk frequently about collaboration being essential if we are to make progress against cancer, but the longer I am doing this work, the harder it becomes to see that happening successfully in the long term, and finances will of course force the issue for many. In my own case I do my best to collaborate with many larger organisations but with mixed results, and a degree of suspicion. Few are keen to share work on a regular basis if at all, generally only when they have a particular campaign they wish to highlight, then silence for a few months! Smaller organisations are much better, often forming personal relationships to help each other, but still ultimately focussing on our own causes. But then our work exists for two reasons, primarily to help others of course, but in many cases to give ourselves a positive focus or continue the legacy of a loved one. This therefore means that we all have a different vision too!
When you look at the bigger picture, across the number of diseases and then with all the countries in the world doing different things, you can see this situation looks difficult. Of course there is collaboration happening, but I am beginning to wonder if we will ever be able to truly work together for the common good. With limited resources and continued duplication of work, it seems crazy that this situation appears to be getting worse not better. I have concluded that there will never be enough cancer support for the numbers that will require it, we all need different things at different times and the spectrum of what is needed is so broad. But we do need to find a way that works, to enable us as a society, to optimise our efforts to help people living with long term health conditions to play a useful part in society, whilst dealing with their illness. We do all want the same thing ultimately, but it’s how we achieve that is where we disagree!
Above are my thoughts and opinions, please feel free to share yours below.
Thanks for a great post – and I’m not surprised you’re “team” at your hospital recognise your worth; I know you’ve helped them practically on a number of levels, which is brilliant.
I thoroughly felt your frustration and couldn’t help but observe how accurately you’ve described the chaos: this chaos isn’t of course limited to the world of cancer but is in most walks of life.
As you know I work in the leadership world and in the same way as you’ve experienced there are absolutely millions of resources and people out there to help people lead in a better way but in truth leadership as a rule doesn’t actually appear to get much better.
As you so eloquently stated, we are all trying to do the right thing for the right reason in that we want to help each other. Whether any of our efforts actually helps – who knows! The one message I think I would give to anyone who is helping others and who feels frustrated at the slow pace or the lack of co-ordination is this.
Give of yourself in service the best way you can – the truth is that the real benefit is in the joining of hearts and minds and the journey back to love we are all on. If you see this as the focus then you can let go of outcomes or what the world looks likes and live in what’s happening today. Don’t try to change the world, but just do what you’re inspired to do on a daily basis.
Yes, I’m only too aware that this chaos exists in many walks of life, as I am a great people watcher! As a business owner and manager, I see exactly what you are talking about, and agree totally that leadership doesn’t appear to improve.
Your advice is very valuable, and sometimes it is difficult to see it that way. In my own case I know that what I do makes a difference to many, because of the feedback received. However whether it is improving the system, that is more difficult to measure!
I’m inspired daily to help people, and hopefully that will eventually improve things for others. But I now appreciate the size of the task and enjoy the daily positives rather than seeing the negatives of being unable to change the world!
Thanks as always for sharing your wise words and experience with the Community, Christina!
Another thought provoking blog post Chris and its something that resonates with me a lot. When Womb Cancer Support UK began 4 years ago there was nothing specifically for womb cancer. I’ve worked hard to get the word out and raise awareness but find it very hard to get acknowledgement from the larger cancer charities like CRUK or Macmillan. Many of the larger organisations treat small scale organisations with suspicion or even contempt yet we are only filling in the gaps that they leave because they become focussed on raising funds rather than helping people. Look at many of their websites or FB pages and it seems to be all about how you can help them raise money rather than how they can help you. There are so many smaller organisations out there doing what they can to help and support patients/carers etc but many are struggling to be seen. Until the larger organisations provide the help and support that people actually want and need then smaller, local organisations will continue to exist to plug the gaps. You have managed to begin to bridge the gap between the individual patient or small organisation and the larger charities and hopefully they will take on board what you say and things will improve in the future. All the best.
Hi Kaz. You know I totally understand where you are coming from. After many years of doing what I do, I am still so disappointed at the lack of engagement of large charities. With my business background I was shocked to see such little coordination and willingness to see the bigger picture. I wanted to work with them, as no point to reinvent the wheel, but there is little appetite in most cases. Plenty of nice words but no action 🙂 Now I focus on bridging that gap that you mentioned. Working on my own means I am not ‘suffocated,’ and will continue to work to improve that situation. You’re not alone with your struggle, but I know at times if feels like it. Watch this space! 🙂
Totally agree with what you have said.
Thank you as always your words are so true have found the same here in Wales we need to work together not in all these different charities that grow too big and get too political Cancer is cancer no matter where it is in our body in our mind we feel the same when some of us make it and others who try to stay here do not. Hope you will continue with us for a long time Chris you work for the good of others don’t burn yourself out. love to you and family Georgine xx
Thx so much Georgine. These issues seem to be the same all over the country unfortunately and will certainly do my best to improve that! Doing my best to keep things steady, and I hope life is good for you both xx