OK, so let’s take a few steps back… to the very beginning of my cancer journey. I’m going to get the background down so we can move along. I think it’s important, especially for those of you in the same / similar situations, to know what this did to me initially so that you know you’re not alone and anything you feel, think and decide is okay.
I am most definitely no stranger to hospitals or doctor’s rooms, in fact, I’ve spent most of my life in either one or the other. I’ve never been the healthiest of people. At the tender age of 27, I’ve lost a kidney, had a few strokes and been diagnosed with quite a few conditions: Hepatitis, Fibro and Peptic Ulcers to name but a few. My metastatic cancer diagnosis and prognosis was definitely not the first time I’ve been told I might not make it. The point is, I’m still here!
Down to the details…
I’m going to omit all the dates, medical terms, names and all the “technical” details… purely because I can’t really remember them… I don’t want to remember them. I’m going to concentrate on how it felt, how it happened. If you’d like to know the other details, let me know, I’d be happy to go through it all with you.
I first started really noticing symptoms when I had flu-like symptoms (aching joints, headaches, etc) and a horrible burning pain in my stomach, primarily on the left side. There were a bunch of other symptoms that I’d experienced for quite a while but never took any notice of, there was always another explanation. Being an ulcer sufferer, I took the normal antacids and flu meds that I was used to. I woke up one morning feeling incredibly nauseas; I started vomiting excessively and noticed a large amount of blood. A day or two later, I noticed blood in my stool as well. That’s when I really started to worry. I rushed to my GP and, to make a long story short, I was referred to a Gastroenterologist with a suspicion that my peptic ulcers had perforated. Cancer never crossed our minds!
The Gastroenterologist took one look at me and I could see by the look on his face that he was worried. He was honest and open about his suspicions that I had gastric cancer and sent me straight for a series of tests. None of these were enjoyable… especially the stool sample. When I left the doctor’s office that day I made a decision not to talk about it, to keep it quiet and wait it out. When I arrived back at my office, I saw a picture of my husband and I taken at our wedding and I couldn’t do it. I called him up and cried like a baby. I called my brother and sister in and told them what the doctor’s suspicions were. It was so difficult to talk about. I swore them all to secrecy and the long wait began.
I didn’t do too much thinking in the days that followed. I just carried on. I didn’t know anything yet. I refused to freak out, I just wanted to wait it out.
A few days later, after the first batch of tests, the doctor called me in and gave me the initial diagnosis… I have gastric cancer. I was told that more tests had to be done to determine the stage and that would take a few days. I didn’t react, at all. I think, at that point, I didn’t believe it. I was in pain but it wasn’t that bad. This couldn’t be real. You’d think that with my medical history, I wouldn’t really panic. Well… I did, silently, in my head, I freaked out.
Telling my family was the single most difficult thing I have ever had to do. I couldn’t handle the thought. I remember driving back from the doctor and the only thing going through my mind was, “how can I do this to them, they have been through so much.” I kept my game face on, I didn’t cry, I didn’t panic… not on the outside anyway. Inside I was broken.
I changed my mind a million times in the following days. At first, I stuck to my guns… I didn’t want anyone to know. I had my immediate family sworn to secrecy and I was adamant, that was it, it had to stay that way. I also decided that I didn’t want to know any more. I didn’t want to see the doctor again; I didn’t want to know the stage. I just wanted to forget and carry on living. Those decisions changed a million times over the following few days and eventually, after quite a bit of encouragement and some tough love, I agreed to see the doctor and tell “certain” people. The more I spoke about, the more it hurt and the more “real” it became. For the first time in my life, I felt real, gut wrenching, fear and I couldn’t stand it. Those were the longest few days of my life. I did everything I could to make sure I stayed strong on the outside, I wore my brave face. I only broke down when I was alone with my husband, where I felt safe, comfortable, at ease. We broke down together and I think our marriage and our relationship grew in strength by over 1000% in those few days. I researched my heart out> I spent every waking moment on the internet reading everything i could. It kept me sane, it helped me understand and it made me feel a little less alone.
The final, official diagnosis came on a Friday afternoon. I was in the car, driving to Bela Bela for a weekend away with my family when the call came through. I begged for quite a while for the doctor to tell me over the phone as I couldn’t get back to see him. Eventually he gave in. I don’t really remember the conversation, but I clearly remember the words “Stage Four”, “Metastatic”, “Gastric”, “Cancer”, “Spread”, “Blood”, “Central Tissue” and “Leukaemia” I know I asked a few questions and I remained calm. I also remember the phrase “Throughout your body” and “cannot be cured”. We agreed to discuss treatment options a little later. It took me a few minutes to absorb what had just happened. I refused to talk about it. I needed time to myself. The truth is, when that phone call ended, I gave up. I stopped believing in anything and I went numb. To me it felt as though my heart had already stopped beating, it was too late, I was already dead. All i wanted to do was crawl into a little hole and wait for that moment to come.
My big brother grabbed me outside a Pick n Pay in Bela Bela and insisted that I tell him. I did. He has been my rock since that moment. He told me, there and then, in no uncertain terms, that I will fight this, we will do whatever we have to do and we will win. He reminded me of my commitment to the Vrede Foundation and how much the cause means to me, he reminded me of how stubborn I am; what a hard-ass I am and how much strength I have. Unfortunately, at that point, none of that was enough; I didn’t want to hear it. It stuck with me though, in the back of my mind and deep inside my heart.
Throughout this process and the beginning of this journey, there have been a number of feelings and thought that have taken me by surprise. I remember feeling dirty, violated. There is something inside of me that shouldn’t be there, something has intruded into my body, my personal space and I can’t get it out. The more people I told, in the beginning, the more exposed I felt. I was embarrassed, humiliated and shy. I felt that I needed to be strong for everyone else; no one could see me down, upset or sad. I couldn’t cry and I couldn’t talk about it in front of anyone else. I kept saying, over and over, to everyone, “I’m ok, I’m fine, everything’s going to be fine, don’t worry.” I smiled and kept my guard up. On the inside though, I was broken… I am broken.
Although I have made the decision to stay strong, be positive and fight with everything I am, I still struggle with these feelings, I still think about death and I still cry. I breakdown often and I am afraid. I don’t believe that to be a bad thing. I think it’s important to feel these things, as long as they do not consume you. I am no superwoman. I don’t want to be. I will feel as I feel and I will travel this journey as I need to.
So… that’s the background and here we are. I hope you will travel with me. It’s a long road and I don’t want to walk alone. I will help to carry you if you will help to carry me….
One Day at a Time