I hadn’t actually realised the toll that the last few months was taking on me, and I was starting to see my upcoming first ever cruise, as an obstacle to continuing the things I was doing. Particularly dealing with my late Mum’s affairs which are becoming more complex. Adding to that some important meetings, then the uncertainty of health during travelling, I was starting to feel unsure about my break as we were driving to Southampton to join the ship. We rarely are able to take holidays due to my unreliable health, but this trip was an opportunity to experience something we had never done before, unusual at my age! As much as anything Mrs L deserved the break, and to be waited on hand and foot. As we had never cruised before we went with some friends who knew the ropes. My 60th birthday also fell a few days into our trip so it was a very strange time for me.
The first big obstacle I encountered was the shocking price for Wi-Fi on board, which encouraged me to leave my phone in the safe for most of the time, and what a blessing that proved to be! I was actually focusing fully on enjoying myself, which is something I rarely do if I’m honest. My friends remarked quickly how relaxed I had become. Having got so used to immediate communication it was difficult at first, but even if I got some news whilst on the high seas, what could I do with it? It did feel like I was trying to come off a drug, but I realised it had given me some much needed ‘me time.’ We had a fantastic time away, and I learned a very valuable lesson. I do enjoy keeping in touch with everyone via my social media channels but I have overplayed it’s importance in my life. For the first time in a long time, I was with thousands of people who didn’t know me as ‘that cancer guy.’ Going to dinner was a joy, as I never mentioned anything about cancer and I felt like I had got back to my old self.
Since our return of course I have got back into things, and have some interesting opportunities, but realised it was nice to be really anonymous! The time away from the constant nudging of social media has given me something to think about. At the age of 60 I have received my Freedom Pass too, which enables me to have free travel around London, one advantage to getting older! I have already used it several times and can see myself getting out much more frequently now. Not being able to work regularly left me with a large vacuum to fill, which I did quickly with my support work, and of course I am passionate about what I do. My personal charity work is now taking primary importance as we look to help more people affected by cancer.
Last night I watched an incredible programme entitled ‘The Big C And Me’ on BBC One. This focused on some incredible patients and their families and the impact that the disease was having in their lives. It is one of the few programmes I remember that seemed truly focused on the people, without a bias of healthcare organisations. The patients involved were incredibly honest and at times the programme felt raw. All the examples were things I had encountered within my own experience. I was lucky enough to speak to the person who made the programme and he told me that he wanted to help remove the stigma around cancer. I told him he had done a brilliant job!
But it brought back very vividly, my own experiences and I couldn’t help but think how isolation begins to take over when you are diagnosed. One man in the programme described having been ‘reborn’ after cancer, meaning that his old life had finished and a very different one had begun. Everyone affected by cancer is learning to ‘live again.’ This programme helped a mass audience understand the psychological issues that people have to deal with. I know since speaking to many since, that they started to understand things more clearly afterwards.
However frustration is never far away from my thoughts when discussing cancer support, and I am learning via my own charity, a lot more of the inner workings of health organisations. Everyone is so aware of the issues but I see no genuine efforts to change the overall picture. Patients are on the whole still in the dark as to what help is available and where it is. As one person mentioned during the programme it is now like ‘living in a fog.’ In this day and age there is no need for this to happen. We have so many channels of communication available but few organisations grasping the nettle to collaborate for the benefit of patients. Red tape and self interest are just a couple of the major issues hindering the issues around cancer support. Goods and services given free of charge to patients, and the information is not shared within the ‘cancer community.’
I see these things daily, when people find my own charities’ services almost by accident! “I never knew anything like this existed,” is what I hear. There are so many services out there like mine and it is time that healthcare organisations started to ‘look up’ and see what other people are offering and then sharing for the greater good! Improving life for people is not always about costing more money. Let’s see where the next six months take us!!
As always, above are my thoughts and experiences, please feel free to share yours below.