I have cancer. I find that very hard to write. I want to delete it and write ´I have a cancerous tumour´ instead. But the fact that I find it hard to write or say that exact phrase fascinates me, so I am going to leave it there. You might say; of course it is hard to say (you poor thing), but actually in my experience most people that have cancer say ´I have cancer´ as often as required. Which can be surprisingly often. Yet I have never said it out loud, to anyone. “They found a tumour and it is malignant” has been my go-to phrase and in all honesty that is how I see it. My dad had leukaemia, Acute Lymphoblastic Leukaemia to be precise. One that is more common in children and unusual in adults. He was very ill, very very ill. My parents were on holiday in South Africa when they found out and they, with my little sister, were immediately flown home with a nurse accompanying them. He went straight into hospital where he was started immediately on a gruelling regimen of chemo and radiotherapy. He got thin, he lost his hair, he had horrible side effects. Sometimes when we visited we had to wash our hands with antibacterial gel and wear face masks. He was very unwell for quite a while. That was cancer. What I have isn´t the same. Though, really, it kind of is. Isn´t it?
The reluctance to label myself a ´cancer sufferer´ says as much about what I know about other people´s expectations as it does about my own history and experience with serious illness. You tell people you have cancer (even using my spin on it) and after the initial reaction of surprise, shock, pity, you can usually tell they are thinking ´but you look so well!´ Because I do. The particular drugs that I have been prescribed have not had the side effect of causing hair to fall out. I have lost a few kilos, and as I wasn´t underweight to start they are not missed. My appetite has always been a constant companion in my life. I have never been one of those people (yes we envy them even though we know it is wrong) to sigh ´when I get stressed I simply Can. Not. Eat. A. Thing.´ Ha! if only. I can eat when I am tired, awake, bored, stressed and every other situation in between. So I lose weight when I feel unwell but the first day I feel better I more than make up for it. And the result is hovering somewhere a few kilos under my ´starting´ weight but very close to my ideal weight. YAY! AM I RIGHT? (gotta take the perks where you find ´em). This sentiment, unsurprisingly and completely understandably, is the reaction of most of my (girl)friends. The main side effect has been a crushing fatigue but it comes in waves and as I do not venture out when I am low, no one really sees me like that. They see me when I have slept well, got up and put on makeup and done my hair and feel mostly fine.
When I was first diagnosed I did what most women probably do and went home and stared at myself in the mirror, scraping my hair back, trying to imagine what I would look like with no hair. I would love to say I wouldn´t care, it is only hair, it grows back. And that is true. Any of us would shave our heads in a second if it was that or death. We would do it and we would deal with it and it would be okay. It would. But that doesn´t mean it is easy or wouldn´t break your heart. And it is partly because you don´t want to be ugly, let’s be honest. If we thought we looked better with no hair we would all be rocking the early 90s Sinead O´Connor ´Nothing Compares 2 You´ skinhead. Most of us are not blessed with beautifully rounded noggins and petite features and big doe eyes. Most of us get up in the morning and do not feel like we can face the world until our hair has been tamed into some kind of presentable style that reflects the image we want to project that day. Bad Hair Days are a real thing, people. If I can start the day in a grump because my hair won´t do what I want and looks atrocious, how will I feel being bald?
But it isn´t just that. It is not just the vanity. It is the LOOKING LIKE A CANCER SUFFERER. To my kids, the world in general, and to myself. My kids were really upset about the possibility of me losing my hair. They have seen both of their grandmothers go through breast cancer and lose their hair and I am not sure if that played a part in their reaction or whether it was purely the idea that I would look different, and ill (and that all their friends would know) that horrified them. I got it. I wasn´t offended by their reaction because as a kid I would have felt the same. Hell, my Dad shaved off his beard once when I was about 9 and I swear I didn´t recognise him. When I was visiting home from University for the first time since my Dad had started treatment I walked into the hospital room and saw a thin, bald, man lying on a bed in a room where they had told me my big burly long haired dad would be. I was 18. I wasn´t a small child. I should have, could have, thought that he would not look well. But I wasn´t prepared and what I saw scared me. I stayed stuck with my back to the wall during the whole visit. I can´t remember if I even said much. And I felt mean. That it probably hurt my Dad to see me react like that. But I was 18. And I wasn´t prepared. And it was my genuine, real, heartfelt reaction and it was what it was. Because I saw someone very different from the person I knew. Someone very ill. It is THE image of cancer. It shoves our fear right into our face and makes us confront it. And I am really grateful that at least for now it is one less thing my kids have to deal with. But it isn´t just the kids. We have been very open about my diagnosis. It is not a secret or something I am scared to share; with friends, acquaintances, parents of the kids´ friends, neighbours. And yet. I wouldn´t want anyone and everyone to know. Losing my hair would be like a declaration “something is wrong!” “Look! Look!”. I am relieved to not have to deal with the unwanted attention or to see in the mirror an altered version of myself, reminding me that things, at least for now, are most definitely NOT NORMAL. I think it would be really hard. Really hard. Not losing my hair has helped me maintain the perception of myself as healthy and ´normal´, to myself and all of those around me.
So I have lost a few kilos and kept my hair. Ergo I do not look ill. I do not look like a cancer sufferer. So is this why I do not identify as a cancer patient? It must help that I am also an eternal optimist. A potentially annoying trait that has me piping up with peppy little asides to whichever negative situation arises. “we have to change 3 tires on the car” thank goodness it isn´t all 4! “the washing machine broke” at least the dryer still works! It is annoying. We have lived through various situations when even I have heard myself and thought “Good lord SHUT UP” or burst out laughing because I can appreciate the ridiculousness of always finding something positive. My husband often has cause to point out that we don´t always have to look on the bright side. Sometimes we can just accept feeling like things are rubbish. And I get that, I really do. Having cancer has certainly helped me to appreciate that sentiment more (more of which in another post, another day). But still, STILL, I really do feel like there are few situations in life where you cannot find a glimmer of light, a positive spin, a rainbow lurking just round the corner even though you can barely see it. And that has surely kept me feeling (mostly) upbeat and positive with a smile on my face when the situation would more than justify me stomping around under a black cloud. Many people quite rightly get depressed as all hell in my situation and who can blame them? I feel lucky, in spite of it all, because I don´t feel depressed, or even very sad. Not that I don´t have my moments. I am not made of stone or impervious to the seriousness of the situation. But in my day to day I can look on the bright side and carry on. And like a suit of armour, it makes me feel strong.
Don´t get me wrong. Having my hair, looking well, feeling positive, none of this means it is not serious. It is serious. My tumour was graded as T3N1M0. Google cancer staging if you want to know more, it is about as fascinating to read as you probably imagine it to be, suffice to say it starts at 0 and gets more and more serious until T4. The T is how far the tumor has grown beyond the original site into nearby tissues, N is the degree of nearby nodes affected, M is metastases (spread) to other parts of the body. So it is fairly serious. Don´t let my appearance fool you. But I feel like saying “I have cancer” implies an acceptance of this public face of cancer. And that is a very real side to cancer but it does not represent all people with cancer. And it doesn´t mean that one type is worse or better than the other because really, what kind of competition would that be? It is just that within this big bracket of illnesses categorised as Cancer there is a whole wide world of experiences. It is no longer this big bad that means only one path and one image and one outcome. Reading about cancer on the web and you will see said more than once that cancer can be similar to a chronic illness, like diabetes, something that some people will learn to live with, some of them for a long time.
I do have cancer. And working through this means that maybe I am a bit closer to accepting that it is okay to say that. It doesn´t mean I am dying and it doesn´t mean I am a different person, I have an illness but I am still me. And if that means that in some teeny tiny way I can show people that it doesn´t HAVE to mean your world is falling apart, it doesn´t HAVE to mean The End then that is okay. More than okay.