It Has Been a While!
It has been a while since I last wrote anything, and that has been due to my physical and mental health. I found life so overwhelming that I retreated into hermit mode and have stayed there ever since.
It just got to be too much for me. I was trying to advocate for bladder cancer and stay on top of my own health. Everything had become such a mess. I felt that I needed to take time away from the keyboard and live a life where I was fully present, and it wasn't all to do with bladder cancer.
Bladder cancer takes its toll on you
It is exhausting. I cannot begin to describe what it feels like to have the Sword of Damocles hanging above your head and know that 30 seconds could change your life for the worst.
With every pain, twitch or ache, your mind starts to panic immediately, and you wonder if it is associated with your bladder cancer. Your body goes through so much, and it is after treatment that you will start to fully process everything that you have gone through.
As always, it is different for everyone. Some people can just get on with their lives and not give bladder cancer a second thought. Other people, me included, have a hard time processing what we have gone through and need a bit extra help.
Asking myself the question, "Why me?"
This isn't an easy task. For me, I had to start unpacking the trauma which has come from some of my treatments, as well as being told that I was going to die and to make the most of my time left. I do understand that facing our own mortality is inevitable; however, I "prepared" myself to die at 46.
It wasn't fair. Why was this happening to me?
I made memory boxes for those who are important in my life. I wrote those tear-stained letters to my loved ones, with anecdotes and stories about our times together. I was frightened that I wouldn't be able to tell them just how special they are and how much it meant to have them in my life and what I loved about them. It was, and is, never-ending.
I spent time creating my own care 'death' plan, filled with my wishes on how I should like to be treated. On how I felt about medications and sedation. And, of course, on what my final wishes would be.
I cannot tell you just how traumatic this has been. All while trying to live a life with multiple autoimmune disorders and the threat of a recurrence at any time.
Please do not misunderstand me - I am incredibly grateful to be alive and breathing, with some quality of life after all these years, as it is something we were told would not happen.
I am Dr. S's walking miracle. I am the exception to the rule.
For a while, I was far too scared to hope that it wouldn't happen to me. Each time we sat and waited for my new PET scan results, both Tim and I would wonder if today would be the day that the cancer came back.
Then the wonderous day - 5 years of being "no evidence of disease." Remission baby! The day I thought would never arrive. It came and went. My oncologist has no idea why this aggressive small cell cancer, which was in my bones, has not reared its ugly head.
I am so thankful.
This year it will be the 7th-year anniversary of my diagnosis.
Did I ever think I would get here? No, not in a million, gazillion years. But there is life out there after bladder cancer. It just takes a while to adjust to you after cancer. Does it get better? Yes, it does. You learn to cope.
Adjusting to you
I still have my moments. After having my radical cystectomy and living with an ostomy for years, I still get leaks at times. Sometimes it's a silly human error and not my bag's fault.
There are times when I don't feel very well, and my stoma gets neglected. I do find it harder to keep on top of my stoma care when I am unwell.
Talk therapy can get you there
I would recommend counseling to anyone who has cancer. Talk therapies are such a good way to get out how you are feeling without upsetting anyone or feeling like you are just 'dumping' your problems onto them.
I found it difficult to make a life for myself after cancer. I can't work due to other health issues that I have, as I never know how I will feel until I wake up in the morning. I felt lost. I didn't know myself anymore.
Finding myself after bladder cancer
I began to journal and meditate while I was in the bath. I started looking after myself, which meant eating better, focusing on my nutrition and my mind.
I also began to create. I love painting and paper art. I started to do things that would bring me joy and happiness. It didn't matter what it was. One of my favorites is simply blowing bubbles.
If you are at a loss on how to find yourself again, may I suggest that you look at the small things in life that you can do for yourself that will bring you joy and happiness? Make and create your own happiness.
Tried and tested: Medicinal cannabis
If you have read of my bladder cancer journey, you may have noticed that I tried medicinal cannabis in a quest to find things that would help me. The outcome is yes, it did help me so very much; however, it was costing more than we could afford.
My own personal opinion is that I do think that cannabis has helped me to keep the cancer away as well as helping with my anxiety, pain, and arthritis. It does help me to sleep better.
I have recently filmed a short video for a pharmaceutical company detailing my journey with bladder cancer. I am pretty excited. It will be used to educate others on the psychological side of living with bladder cancer.
It has also given me focus, and I realize that my story is not over...
Has anyone in your family been diagnosed with bladder cancer before?
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