Get Me Off This Rollercoaster - NOW!
For those of you who don't know me or my journey, my name is Anita, and at the grand old age of 45, I was diagnosed with terminal small cell bladder cancer. Now, this is a rarer type of bladder cancer, and by the time I was diagnosed, it had already spread to my lymph nodes, liver, and bones.
My prognosis was grim
My prognosis was grim. I was told that I may or may not survive to Christmas 2016 and yet, here I am, working on my laptop on a beautiful sunny afternoon in August 2019. Never in a million years did I ever think this would happen, especially as those first 3-4 months were about preparing myself, my family, and my friends for my death. It was such an emotional and devastating time for us all.
I feel fortunate
I know that I am one of the "lucky" ones, fortunate to still be alive. To still be waking up every day, lying next to my husband and our dog, Sherlock. I know that I am amazed at the life events that have happened this year to my family. For one, I am a Nana! Yes, me, a Nana! As I write those words, I am still having to pinch myself.
Two years since I had my bladder removed
I recently "celebrated" my two year stoma anniversary. Well, when I say celebrated it, I mean I acknowledge it. I remembered the day, I looked at the photos of me in ICU (intensive care unit), and I became so overwhelmed. You see, that operation has given me so much more time.
They took out a lymph node that was filled with cancer cells; I know for sure that had I not had that operation then my story would have been completely changed.
Bladder cancer and mental health
I'm forever speaking about bladder cancer and mental health. This is such an important issue for me as over the past three years, I have gone through every possible emotion there is ranging from anxiety and heartache to elation and relief and becoming completely unsure of my place in the world.
I isolated myself
I isolated myself from everything. I stayed at home, I couldn't be bothered with social media, everything became so terribly difficult to do. I avoided phone calls from doctors. I canceled appointments, and I left my emails unanswered. Why? Because I had had enough!
I couldn't cope with all the appointments and specialists
Enough of the endless hospital appointments, enough of the blood tests. Enough of the ongoing treatments for all the other illnesses this cancer has brought with it. I see a cardiologist, a rheumatologist, an oncologist, a urologist, a gastroenterologist, and a respiratory consultant. It's endless!
I began to only speak to people outside my small circle if I really HAD to. It was all draining, all-consuming, and I just couldn't cope with it anymore. Three and a half years I had ridden this rollercoaster and taken it in my stride. Yes, there have been some sad moments, happy moments, and moments in between all of that.
I was worn out
I desperately wanted to help and support others, but I just didn't have the energy. I was worn out with everything - I was worn out with life.
I wanted to just be normal, just be "me." I wanted to be the Anita who bakes and looks after her family. The Anita who doesn't have cancer or illnesses that prevent her from doing things. The Anita who felt well!
I was referred to see a psychologist (oh, add her to the list), and it's been four appointments now, and I think the fog is beginning to clear.
How my psychologist has helped me
She has helped me to see that I am the same person I was, just now I have added layers. She has helped me try and make some sense of living in "limbo land" (not dead yet but not cured and never will be). She has helped me to see that life changes, every life changes, even without cancer. We evolve and grow as a person, and that's what cancer has brought to my life.
We speak about living with an "expiration date," a death day. The day we all know will happen, it just is that mine will be a lot sooner than I would have wanted. We speak about how that affects things that I may or may not do and how to come to terms, and I finally think I may have found my peace.
Planning for the future in my own way
She has helped me to deal with issues that I thought I had. We all say about living in the here and now but honestly - how many of us ACTUALLY do that? How many of us don't think about our futures? It's human nature. We dream, we plan and to some extent, I can still plan for the future. Okay, so there probably isn't much of a point of my going to university but if I wanted to, why shouldn't I?
Why should I let my diagnosis change and destroy my hopes and my dreams? There is always hope. I hope that I will prove everyone wrong and will be a survivor, a thriver. Someone who I am proud to be.
Lessons I have learned
Bladder cancer has taught me so many things. I am a writer (hahaha - I still pinch myself). I am a supporter of others for them to lean on. I have experiences to share; even though all of our journeys are so very different, we still all feel the same emotions at points in our journey.
I have grown as a person
It has made me realize that my journey, now, is just as poignant and important, maybe more so, than the one from before I was diagnosed. I have had so many opportunities to help change legislation, to speak about living with advanced cancer and the psychological effects. I have been invited to focus groups. In short, I have GROWN as a person, so instead of mourning the "old" me, I am going to give her a gentle hug and tell her that it's ok, she can come out now and we can work together in this fight against cancer.
How well does your healthcare provider understand your bladder cancer?