Between my diagnosis and the end of treatment, there was certainly more time spent thinking about cancer than thinking about anything else. Things have changed, thankfully. However, I do still think about cancer – a lot. I mean how can I not? I’m missing a body part, I have a doctor’s appointment almost once a week (oncologist, oncology surgeon, family doctor, plastic surgeon, physiotherapist, and so on) and with my continual fear of recurrence, I will never ‘forget’ about cancer.
It’s nice to not wake up thinking about cancer like I was last year but within 2 minutes of opening my eyes, it crosses my mind. I wake up many times throughout the night because my expander feels like it’s moving or I catch a glimpse of myself in the mirror and notice the significant difference between Lefty and Righty (and let’s not omit the fact that my stomach now sticks out farther than my boobs), and the fatigue – my God, the fatigue. The other day, I woke up at 6:30am, had a cup of coffee then about a half an hour later, I went right back to sleep for another two hours. I could be wrong but I don’t think that’s normal – isn't coffee supposed to keep you awake?
I still very much feel like I am in the thick of things. It’s true that I am not in treatment and the only physical remnants of surgery are my scars but mentally, mentally it seems to be greater than ever. I feel like if I don’t tell someone that I’ve just met that I had cancer last year, that I am keeping something from them or even lying to them. Does that make sense? It’s like it’s such a big part of me that I feel like my opening line should be ‘Hi, my name is Katie, I’m 27, and I had cancer.’ Quite honestly, I think sometimes I just want to talk about cancer so I can share some of the thoughts that I have going on in my head. They are not new thoughts but sharing the same thoughts with new people can sometimes provide relief. Again, does any of this make sense?
My beautiful hair is a constant reminder as well. It continues to grow out instead of down, and it is so curly that it’s like it’s growing towards my head instead of towards my shoulders because the curls are curling into themselves. About two weeks before chemo started, my mom gave me a cute hair cut (taking off 12 inches so I could donate it) and I felt good about being able to give my long, healthy, uncoloured, blond hair to someone who needed it. Then, when I shaved it, I felt like a warrior, and let’s be honest; doesn't every girl wonder what it’s like to shave her head? I am grateful to have hair again but at least when I was bald, I felt like I was wearing a badge of honour and people were aware that I was going through chemo. Now it looks like I just cut my hair like this! I actually had a girl say to me today ‘do you always keep your hair short?’ I wanted to break down right there in front of her but I just said ‘No, it’s growing back from chemo.’ Why is our hair so important to us? And for all of you who say or have ever said ‘it’s only hair’ to a cancer patient, please stop saying that and feel free to shave your own head.
I have said many times that so many people (including me pre-cancer) assume that once treatment is over, cancer is over and I have really been trying to shout from every mountain top, that that’s not the case. I know that no one can prepare you for the everlasting emotional side of cancer, and regardless of how many people read this blog who have never had cancer, if any of them are ever diagnosed, they too will be ill-prepared for cancer’s grasp post-disease.
I wonder what my friends and family think when I talk about cancer or when I bitch about mastectomy bras or mastectomy bathing suits (something I am going to brave this summer). I often wonder what they are thinking while I am talking – my assumption is that it’s something along the lines of ‘Aren’t you over this yet?’ or ‘Have you not gotten used to having to deal with one breast? It has been over a year?’ Many times I don’t want to burden them with my fears (especially of recurrence) because I don’t want to worry them and for some reason I think talking about my cancer fears makes me look weak because for the past year, I have been told how strong I am and I feel like that’s something that I need to live up to.
I wonder what my friends think in terms of recurrence too. Do they wonder if it’s going to come back? Or do they think it’s over and that I will be enjoying lawn bowling with them in 60 years along with our arthritis ridden hips and our double (or triple) chins? I think many of them believe that I have put in my time with cancer and that I will never have to experience it again. I don’t know what I would have thought if roles would have been reversed. I think my fear of recurrence stems from an abnormal amount of fear and a realistic awareness of the facts while I think their approach stems from blissful ignorance and genuine hope. I think a second diagnosis would be worse because although the first time is full of unknowns and waiting – the second time, you know exactly what lies ahead of you and that’s horrifying.
As I was going over the topics that I wanted to write about this week, nothing in particular stood out. I tried going over the past couple of weeks to see if anything stood out but lately I haven’t felt any particular guilt, or fear or gratefulness so I thought I would write about the continual battle with cancer even after you've been deemed ‘in remission’ or ‘cancer-free’ or ‘NED’ (No Evidence of Disease). If only there was a cure for cancer of the mind.