This question is actually not as crazy as it sounds. In the last few weeks, I have had numerous conversations with a very good cross section of people about the lack of support for people affected by cancer, once they step outside the hospital environment. Despite, the length of time of my own personal experience, I am still shocked, how little support is available.
During my conversations with professionals, the biggest issue that I find is a demarcation of responsibility. My doctors, are doing their best to keep me alive. They care for all of my physical issues, either as an inpatient or by giving me drugs which I can take at home. Once I am outside of that scenario, it feels that I am on my own. My family and friends have been with me, for every step of my journey, but as I have said in previous posts, “I am the only one walking in my shoes!”
I am the one feeling the pain, and mental strain, of trying to stay ‘normal.’ Attempting to live a life, whilst trying to stay alive. Fitting in good things, around treatment and hospital appointments. Sitting at home, whilst my friends continue with their careers, and I do my best to be useful, as my body becomes weaker. Thankfully, the Internet was invented in my era, and I have been able to use my mind much more, and find different ways to use my skills, and occupy my time.
Talking to numerous of my fellow patients, I have yet to find many, that have been able to continue their careers where they left off, prior to their diagnosis. Many have had to go part time or are even unable to continue working, due to physical issues, or the amount of time spent at hospital. Several have been made redundant, and despite discrimination laws, are unable to find another job, once the word cancer appears! If you are not careful, a feeling of hopelessness can affect you. If you are unable to work, this can then create financial issues, which can then put a strain on domestic circumstances.
In the above couple of paragraphs, I have talked about just some of the problems that can be encountered by someone dealing with a cancer diagnosis. There are many more! One of the most common forms of support discussed as an option,is counselling. I have two observations on that. Firstly, there are very few counsellors around and definitely not enough for everyone affected by cancer. Secondly, there are really very few people that actually require those services. Maybe if you get to the stage of being clinically depressed, but most people are frustrated with what is happening and might just require more practical forms of support.
There are numerous charities around, that are great for giving information, regarding your disease, treatment, financial issues etc, and they even facilitate forums where you can find like minded people, with similar issues. However, these facilities are rarely ‘joined up’ and tend to be a ‘one size fits all.’
The biggest problem, that we face, is that cancer affects us differently. Our circumstances are all unique, so there is not one single solution. To find the answers to the questions we pose, will take a lot of hard work, talking to many different people across many different organisations. If we are honest, most of us don’t have the energy or persistence for that.
Using my now, very large back catalogue of experience, my opinion is that we need to approach the problems of cancer, in a much more ‘holistic’ way. After all, our physical health is affected by our mental health, and if we are anxious about issues outside the hospital, that is going to affect our general well being. But where does the line of responsibility get drawn? Is it right to spend time with your clinician talking about your inability to find work etc? How do we drawer all of the strands of our care together?
Apparently, the survivorship issues that we are facing now, are because we have become more successful at dealing with cancer. The drugs and treatment regimes are more effective, and we are living longer because of that. However, this is just the first step. We now have to look at the quality of life that we have, and how to deal with the psychological and emotional effects of our experience.
How are you dealing with your survivorship? Do you feel that there is enough support around? How would you solve this issue?