Having cancer as a disabled person
Our @Richard_Scope talks to us today about the barriers to accessing healthcare as a wheelchair user during his cancer treatments.
Growing up I wanted the same as most people; a job, my own place to live and hopefully a family. I worked hard to achieve all those things, and everything was going to plan, or so I thought. Then January 2010 hit. I found a lump. At first, I did the stereotypically male thing and ignored it. But it eventually got to a point where I couldn’t explain it away or ignore it anymore. After 5 weeks of denial and stress, I was diagnosed with cancer by my G.P.
I had to have an ultrasound in my wheelchair because the examination bed didn’t lower sufficiently for me to transfer safely. Some weeks after that the lump was removed but I was told that there was a high chance that the cancer had spread. Now, living with Cerebral Palsy has meant that I’m no stranger to hospitals, consultants and surgeries but this was very different. For the first time ever, as daft as it sounds, I realised that I wasn't immortal. What was also very different was the way I was treated by this new department, in comparison to the Orthopaedic departments that I had been used to growing up.
Those differences presented themselves very quickly indeed! Before I could begin my chemotherapy regime, I had to undergo a battery of tests to establish my lung function, hearing levels and crucially my weight and height to determine the dose of radiation that I should receive. The hospital had no way to weigh me as they did not have a set of scales that I could sit on safely, and due to the muscle tightness in my knees, my exact height was also very difficult to establish. These important measurements were just guessed. To say my confidence was low was an understatement but I began my chemo as an in-patient on the ward.
During this time, it was clear to me that the hospital was very underprepared to treat a cancer patient who also had a physical disability. As part of my treatment, I had to constantly drink water to help protect my kidneys from the radiation. Obviously, this meant I needed to use the bathroom a lot. On many occasions, I could not get the assistance I required to do this. I couldn’t walk let alone walk with a drip to the nearest toilet, so a lot of the time my pride took a hit. The knock-on effect of this was more work for the already overworked staff, having to clean me up and reconnect me to my beeping best friend (my chemo delivery machine). Despite these additional challenges I got through 8 months of treatment with the help of my wife and very close friends. There were only two real casualties: my ego and my long hair.
I will always be forever grateful to those staff that ensured my recovery and I really do understand how overworked the staff are, but I can’t help but think that a dire situation could have been made slightly better by the hospital considering my cerebral palsy and having the necessary equipment to help me do the basics.
Has your disability affected the treatment you have received? Or put you off seeking treatment?
Specialist Information Officer - Cerebral Palsy