If you are a cancer survivor, you already know what I am talking about. But for everyone else, a cancer survivor’s worst nightmare is a re-occurrence.
After my cancer surgery and chemotherapy in 2019, I lived with the fear of re-occurrence everyday. While the fear would come and go, it was always naggingly present. But as more time passed, it did slip a little further into the back of my mind.
The anxiety of a re-occurrence can be very overwhelming and crippling. While surgery and treatment are challenging, I have found that what comes after is just as challenging. The anxiety and fear of re-occurrence makes it very difficult to simply move forward after treatment. It now becomes an intentional choice to wake up everyday and make the best of it despite wondering if today is the day that your life crumples yet again.
This year, I have had to go through the nightmare that I had feared, just as I was reaching my 2-year cancer free milestone. Regular bloodwork and gynaecological check ups since my surgery in June 2019, through chemotherapy, and beyond all came back with negative results. Yet, despite not having any physical symptoms, I always had nagging doubts and a mistrust of my body. At my visit with my gynaecologist this past January, I opened up to my doctor about my fears and anxiety after each check up.
I would feel relieved about no evidence of a possible re-occurrence for a moment but then I would go right back to feeling like a ticking time bomb again. To ease my mind, she ordered a CT scan, as I had not had imaging done in a while. But the results only confirmed my anxieties, as the scan showed some small areas in the pelvis that could not be identified. This discovery led to more specific blood work as well as an MRI. Which then led to my doctors deliberating and deciding that the best course of action was to do exploratory surgery to see what was going on.
The journey from finding out that there was a possibility of a re-occurrence until the surgery, was an agonizing few months. These small steps of hurry-up-and-wait to find out more, not really knowing what was going on, and trying to functionally live my life through all this anxiety and uncertainty made for daily challenges.
Going into surgery in May 2022, every possibility was on the table. Compartmentalizing this was challenging, but I focused on taking it one step at a time and not getting overwhelmed with spiralling about all the things that could happen.
I am now a few weeks into my recovery from my third major abdominal surgery. All my worst fears came true, as I did have a cancer re-occurrence. The doctors found two marble-sized tumours in my pelvis, both of which were mucinous tumours, just like my previous tumours. Mucinous tumours are cancerous cells surrounded by mucous. These types of tumours are rare and difficult to stamp out. One tumour was on the outside of the bladder and the other was on top of the vaginal cavity. They were removed successfully and there was no sign of disease elsewhere.
Every step of my third surgery journey has brought back trauma and memories of my previous cancer and surgery journeys. Being a patient is never fun, but being a patient AGAIN, is especially not fun. I thought that knowing what to expect going into each step would have made it easier, but instead it has been the exact opposite. Knowing exactly how certain procedures feel has not brought me confidence but has brought hesitation and panic attacks.
The everyday fear of a re-occurrence after my cancer diagnosis in 2019, although very real, still held a glimmer of hope in it. It felt like a nightmare, but a nightmare that I was imagining, not like something that was based on reality. But now that this nightmare has come true, it is very hard to hold onto any of that hope for the future. Now my re-occurrence anxiety will be filled with so much more uncertainty, always wondering if this is the rest of my life.
So, what now?
I will continue to be filled with doubts and questions. Will this happen again? Will I ever be able to do all the things that I have already put off for years?
But the only way forward that I know, is to take it one step at a time. And focus on the things I can do. For sure, easier said than done, but it is all I can do.
Just know that a cancer patient’s journey is not over after the recovery or treatment has ended. The fear, anxiety and trauma lasts for a long time, even forever after. I feel this is an important message for anyone with anyone effected by cancer in their life to understand. And in understanding this, we can all have greater empathy for the everyday challenges of cancer patients and survivors.