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.
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.