This week I have been invited to write a piece to coincide with the ‘It’s Time To Choose’ campaign that Macmillan Cancer Support are currently running. It is designed to make improving cancer services a priority at the next election, and given the fact that by 2016 there will be a thousand people diagnosed daily, this is something that is important for all of us! All the aspects of the campaign are important, but I have chosen to focus on ‘Living Well.’
Back in 2007 when I was originally diagnosed with an incurable blood cancer, it was then more about just staying alive. My prognosis was poor, and I was originally given only six months to live. However I was given a successful stem cell transplant and although still very sick for some time, things started to improve. It became obvious I could never work regularly again though, as I had continual complications, which I still have today.
Despite being a successful businessman, when I left the relative safety of hospital, I felt very vulnerable. This was my first experience of illness and hospital care. That side of things was very good, I had a fabulous medical team who are still with me today, but outside of that environment is where I struggled. I truly believed that since cancer affected so many people in our society, that someone would be there to help me get my life back onto a new track. How wrong could I be? The silence was deafening! Support, what support? I left the hospital with some booklets to read, which seems to be what many regard as the answer to our problems!
Of course information is helpful, but what was required was someone to discuss my situation with, maybe others that have experienced similar things, or professionals that could advise me what to do next. I had come with in an inch of my life, was on a mountain of medication, lost my job, my income, and all my self worth, not really sure what leaflets were going to do for me. Was I being naïve to expect that the service would have someone to help me? It felt that I had fallen by the wayside on the path of life, and everyone except my family and friends were walking on by.
I decided that this just wasn’t good enough, and have worked since then to improve things for everyone affected by cancer. It has been 6 years since I have been doing this whilst still receiving regular treatment personally, and I am truly shocked at the scale of the problem. Naturally over seven years, I have seen an improvement, but in an area that has such limited resources I still see much duplication of work, and poor communication between service providers.
Anyone affected by cancer will tell you that it is life changing. The current official statistics tell us that one in three people are diagnosed, and in not many more years, that figure will rise to half of us. Most of us then become focused on our own health and don’t have the will or strength to become involved fighting with campaigns for better services as that is the time we need them! There are so many people out there that deserve better.
Survivorship is in many ways a nice problem to have, but a problem just the same. As more people live with cancer and less die of it, how can we help these people adjust to society again after their experience? We need to start finding a way quickly, or it will affect our social and economic well being as a nation. Most of us don’t want to be a burden on society, we want to be able to continue giving, for as long as we can, but speaking personally I have felt discriminated against. Employers, holidays, health insurance, car insurance, Department Of Work And Pensions, and many more all want to know the intimate details of my illness. All looking for ways to penalise me for being sick.
Can you imagine sending a CV to someone explaining that you have been sick for seven years? Then the DWP asking if I can walk in a straight line to test my eligibility for work! Of course we want to work like everyone else, but have treatment and appointments which makes it awkward in many cases. A majority of my friends have found it difficult to return to work even if their job has been held open for them, unable to cope physically with the demands of full time work.
Living well after cancer, means different things to different people, but like me I imagine most would still like to feel that we can play a useful part in society. However it is very difficult to do that without the appropriate support. I feel this issue could be improved from our initial diagnosis, where we need to be understood more holistically and less as a pack of case notes. Of course we want our clinicians to fix us up, but who helps us with the bills when we can’t work, or our relationships when our lovers become our carers? All these things are part of the same case and adding unnecessary stress to our already compromised health.
I know that laws have improved to cut down cancer discrimination, but it still exists in many areas. We need to work much harder as a society to have more empathy with people who must deal with these issues. Many of us don’t like asking for help!
To find out more about this latest campaign from Macmillan Cancer Support click Time To Choose
Do you consider you are living well after your cancer diagnosis? What could be done to improve things for you? Have you managed to get back on your feet afterwards? As always I would love to hear your experiences, and please feel free to share them below.