I was diagnosed with renalcarcinoma, which is a type of kidney cancer. I was advised initially to leave it as it was a small cancer, but continued to check in to monitor its growth. Eventually, I was informed that it had grow enough that we should act. I was presented with an invasive surgery as the only option to address this, and invited to take part in a study that the surgeon was conducting. When the time came for surgery I was supposed to receive an epidural prior to surgery, but could not as they administered the blood thinner too early, which made them alter their plans for surgery, and I was put under while they removed the cancer. I was told I would have an 6 inch incision, and that having to go to 8 inches was unheard of, and would need 4-6 weeks to recover. Instead I had a 13 inch incision and continued to feel discomfort at the end of my expected recovery window. While I had follow up appointments with the surgeon, he avoided discussing the possibility of chronic pain with me despite the fact that I was exhibiting systems and sent me back to my GP. After this GP and I tried to piece together what had transpired so we could figure out what to do, but the multitude of tests we were conducting provided no answers. My GP knew I was going to see the surgeon and wrote to him and sent all of the testing data to him for reference 14 months after the surgery. At this appointment he walked in and looked at my medical imaging and was laughing at how he left nothing in me, be it instruments from the surgery or cancer. Ultimately, he referred me to a pain clinic, which it turned out was owned by a customer who I had the phone number of on my cellphone. It was at this pain clinic I found out that the 12 month window to effectively treat chronic pain had passed and that I would likely have to live like this for the rest of my days. Had I know, I would have called him earlier to get myself treated while I could be; however, my surgeon's refusal to directly deal with me meant I did not know about this until it was too late. I had no way of preparing for this, nor was I warned, and it completely changed my life at 50. Thus, it is very difficult to reorient my life at this stage, which is complicated by the lack of supports to do so.
The pain has effected all aspects of my life over the 4 years I that have dealt with it in. This means it has effected me mentally, physically, emotionally, socially and financially. On the mental side of things, it has become next to impossible to focus as the pain consumes most of your focus at all times and makes thinking clearly extremely difficult. Physically it has taken away the ability to have the dignity of holding a job, altered my life in terms of my capability to do things as there is a price to pay for any activity you do. This includes everything from yard work to sitting in an upright position. Emotionally you experience rage due to the pain in public environments, which has the potential to be dangerous to others. Additionally, you go through depression at the change to your life that you have no ability to change or control. A feeling of guilt that you can't meet your obligations also comes with this.
Socially, I have watched myself become increasingly isolated as I have become increasingly inactive and others continue to move on with their lives. This social aspect is tied to the mental and emotional components, as the inability to socialize impacts your mental well-being poorly. Financially, I have lost the ability to work, which means my ability to support myself and my loved ones. Watching them deal with the consequences is particularly hard to bear as I know if had I not gotten the pain I have, our financial situation would be much more stable. While there are government benefits you can qualify for, they are a meager sum that offer no security should something happen, which always will happen in life.
The pain I feel in my abdomen is constantly there, though it continues to flare up non-stop and sharply. Any type of movement is enough to cause it to flare, and if you attempt to do anything there is always a price to pay for it later on. However, even if you relax constantly there are days that unbearable even with no ambitious activity to blame it on. It has made doing even basic things exhausting for me to do. My gut will tighten up to an insane degree and no medications alleviate this. I can only walk slowly and will constantly groan at random times as I am unable to ignore this sensation.
In terms of the challenges I face, it is difficult to explain in a few words what chronic pain has imposed on me. As I mentioned, physical health is much harder to maintain due to inactivity and this inactivity causes me to fall behind even on ordinary housework I have done for decades. I have been isolated due to immobility and the fact that other people simply move on with their lives, which makes passing the time even harder. There is emotional challenges to overcome such as guilt, depression and frustration at my situation, which are made worse by the constant reminders I get of my situation. Financially, I cannot work and have been place on long-term disability, which offers a small monthly sum to me, but I still need to use the equity on my house to maintain a reasonable standard of living. However, it does not offer any financial security to me and cannot make up for the loss of third of my working years. As such, I have started a civil suit against the surgeon who performed my surgery as I believe that ensuring I do not have financial instability for the rest of my days is the very least he can do to make up for his actions and inaction. Mentally, all of the aforementioned factors add up and each has its on specific toll that it takes on your mind. By adding them all together, everyday simply becomes a test of willpower for me on how far I am I willing to push it.
Nothing has really improved my situation so I cannot comment on what has been helpful to me.
Thank you for your interest in this consultation with the Canadian Pain Task Force towards an improved approach to better understand, prevent, and manage pain in Canada.
The online consultation is now closed, and written submissions are no longer being accepted.
Feedback provided from the consultation will inform a report identifying best and leading practices, potential areas for improvement, and elements of an improved approach to pain management in fall 2020.
For more information on the Task Force, please visit the following link: https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/canadian-pain-task-force.html
Keep in touch with us via email at CPTF firstname.lastname@example.org
Canadian Pain Task Force