Having cancer and dealing with said cancer, is a very personal journey. As the days since my diagnosis have rolled into years, I am occasionally surprised that having cancer is nothing like I thought having cancer would be like. I am comfortable with that small epiphany until embarrassment catches up with me and I realise that I once thought it was something far more definable. By the way, I should explain that I do hate to use the word ‘journey’, because it makes it too easy for people to mistakenly conjure up an image of me on a metaphorical road to some sort of luvvie duvvie infused, spiritual enlightenment. In my head, the word ‘journey’ simply means that I manage to keep moving forward, albeit slowly, in spite of what is happening with My Myeloma. How I achieve that and how I appear whilst doing it, is my own private business (the fact that I choose to share it is neither here nor there). In truth, I am not completely comfortable using the term ‘cancer’ to describe what is wrong with me. To me ‘cancer’ is an umbrella term that covers a whole host of nasty, sinister things, which present themselves in a variety of shapes and sizes. I have Multiple Myeloma and yet, my explanation of what I have when strangers ask, rarely gets beyond the term ‘cancer’.Approximately 5000 people in the UK are diagnosed with MM annually. In my very personal journey, I have come to the conclusion that even though it accounts for around 1% of newly diagnosed cancers, myeloma is a relatively small community; the way in which myeloma sufferers cope, behave, look and feel, will always an individual’s experience. There may be similarities between patients, there will always be some similarities, but I strongly believe that each ‘Journey’, so to speak, is unique.
There is a problem with my idea of having a personal, private and an individual journey. It’s a big problem. My Myeloma can never remain wholly personal or private because I exist in a world where other human beings exist and I have to exist with them. These human beings of which I speak, are a diverse bunch, many of whom have not had to experience cancer first hand (lucky so and sos), but they will still have their own perceptions of what cancer is, based on what they have seen and believe to be true, they will in turn apply this to me. Diversity is so prevalent in almost every aspect our society, that it is disappointing that the archetype or quintessial idea of what having cancer looks like is so flawed. I love a sweeping statement and I just made two. I cannot understand why in an educated society such as ours, the general and embedded consensus of how somebody with cancer should behave or look, is so simplistic, and for want of a better word, wrong.
Cancer was not on the syllabus when I was at school, and to my knowledge is not studied in schools today, and so the general (mis)understanding of it, must stem from elsewhere. But where, oh where?
Cancer, that umbrella term for nasty and sinister things, is in itself diverse. A quick Google search tells me that there are currently around 2.5 million people in the UK suffering from cancer. Another Google search states that there are over 200 types of cancer, and believe it or not, some of those do not involve lump, tumours and remissions. I may be preaching to the converted, but while we are on the subject, ‘chemotherapy’ does not stand for one drug and one drug alone, nor are the side effects of the variety of chemotherapies always the same. I still have my eyebrows. I say this because I once saw a procedural police drama in which the murderer was caught because she had eyebrows, which meant she could not possibly have had the ‘chemotherapy’ she claimed to have had and thus was exposed as a fraud and murderer. Brilliant deduction. If only it was that easy. Cancer was not on the syllabus when I was at school, and to my knowledge is not studied in schools, and so the general (mis)understanding of it, must stem from elsewhere… The entertainment industry and the media in general can be blamed for almost every ill, but more on that later.
I cannot attest for the accuracy of the statistics I have quoted, leave that to Cancer Research UK, but the numbers should be big enough to prove that one size does not fit all. Put it another way, if a mad scientist put 50 healthy men in their 30s with brown hair in a room, you would expect their individual differences to quickly become evident. Yet, if the scientist put 50 people with ‘cancer’ in a room, my experience tells me that the majority of people would expect them to act and look the same. I do not know why this should be, or at the very least, why I feel so strongly that this is true.
I am not one to brag, especially not on this point which makes me see red in capital letters, but I am constantly being told that I do not look like I have cancer. You don’t look like you have cancer. I hear it so often, it almost feels that it has become my own personalised greeting. My world is fairly isolated, so perhaps it has simply become the fashionable thing to say to anybody and everybody, and I am being too sensitive. Instead of saying “hey there chickpea, nice bum”, every Tom, Dick and Harry are telling people that they do not look like they have cancer. In the 90s there was heroin chic, in the 10s, there is this. It’s this season’s hottest look; baldness, blubber and lipstick. Today for example, on the last day of September, I was in a room with a number of people also with cancer, and two of them, separately, told me that I did not look like I have cancer. I shook my head. What does this phrase even mean? How should I look? Should I remove my smile? Is it a compliment? Should I be flattered? Most days I assume it must be a compliment and it is what I get now instead of “you look nice today, Emma”. Then there are other days when I think people use it as a backhanded compliment, and it is alternative way of saying “good God, you’re fat.” Once, a beloved family member, over dinner, told me that she thought it was strange that I had put on weight post diagnosis, when it is the norm for the opposite to happen with cancer. I was then questioned as to why I thought I was an exception to the rule. I do not think there is a rule. Horses for courses. Needless to say, it was a conversation that made me feel real swell.
Comments like the ones I have mentioned above, even if they stem from a compassionate place, make me think badly about myself. It is not because I feel like Quasimodo, I don’t. They make me feel like I have done something wrong with regards to my treatment, and that by not looking ‘ill’, I am a liar, a fraud, a hypochondriac or worst of all, it makes me question if my treatment is working. It’s not a feeling I need, especially whilst stuck in this current twilight zone. If I try really hard, squint and look back over the past three glorious years, I think there have been times in the hospital and out of the hospital; with cancer patients and with normal folk, when I have felt penalised for looking the way I look. I do not know why. Whilst waiting for my last clinic appointment, I surveyed the faces of the thirty plus people waiting with me to be seen at the myeloma clinic, and I could not tell who were patients and who were family, and neither would I want to. The room was full of people of various ethnicity, age, size, hair colour and personality. Some people looked out of the window, others look at their phones, one person read a book, I started this blog. The only assumptions I made in that room were regarding the couple who failed to say “thank-you” when I opened the door for them, and a woman who made me climb over her legs and belongings to get to my appointment. Maybe I did not look like I had cancer, so they thought they could forget their manners?
Essentially, Cancers, plural, are complex enough without applying stereotypical and superficial views of what somebody with cancer should look like. It does not afford the people who suffer from cancer and their plight the respect they deserve. It garners sympathy, sure, but it cannot create true empathy.
Apart from seeing two of my grandparents die from cancer, my pre myeloma experience of cancer was slight. My impression of a non-elderly person having cancer was unrealistically pieced together from various media portrayals of what cancer is: films, television programmes, cancer charity adverts and newspapers, all played their part. It was a picture that usually involved weight loss, looking tired, general frailty including looking pale, vomiting, hair loss hidden by a pale coloured scarf and finally, remission or death. Despite the current trend for adapting Young Adult literature on this subject to the big screen, it is a perception that remains, even among patients. In the modern press for example, if somebody famous displays one or two of these symptoms, usually the first three (for few people care to vomit in front of their neighbourhood paparazzo), gossip columns become awash with speculation that the person in question has cancer. Just last week, I saw two such articles about two different actors. Is it the new body shaming? Although many people with cancer do suffer from these side effects, it is wrong to think all sufferers experience a similar path. I understand that not everybody in this fair land is medically trained (I am not), and thus without a knowledge of a patient’s medical history and blood results, what are people left to judge a person’s health by if not their appearance? It’s an attitude that creates an artificial and incorrect hierarchy. Looking like you do not have cancer, doesn’t necessarily mean you don’t. D’uh. Insufferable presumption.
Jackie Collins, the famed and saucy author, sadly passed away last week following a ‘secret’, six year battle against breast cancer. As well as the traditional obituaries, I read one article in which the primary focus was not on her lifetime achievements, but that in the immediate weeks before her death, she showed no signs of being unwell, let alone have a terminal illness, and most of all, she did not look like she had cancer. I know a text message style abbreviation for what I think of this and it goes something along the lines of, what the fuck? I’m a lady though, so I will just SMH.
The coverage introduced a further element to my latest pet peeve. It looked beyond how a cancer patient should look, and they should look and dress in whatever makes them comfortable, in case you were in any doubt. To me, it raised how one with cancer, granted one far more serious than my own, should act. Take the terminal side of things out of this, and I ask of you, how are cancer patients supposed to act? Is there a general expectation or standard that should be applied to sound an alarm if somebody is acting ‘too normal’ or having too much fun? Should us poor sufferers spend our time between bed and the sick bowl or can we work, go to the pub and see our friends and family? Is it too much to assume that they can do whatever the hell they want? We may have some things in common, but we are not clones of are respective diseases. I will put my hands up and say that in my pre myeloma past, I bought into the ‘cancer’ stereotype that provokes me so much now. I had seen Beaches, Stepmom, Erin Brokovich and even Sex and the City to name but a few, and I believed that that certain things did always have to happen with cancer and the limitations encroached were endless. There will always be limitations, but it is a ridiculous notion and one I am ashamed of once believing. It is a belief as ridiculous as me saying I know what consumption looked and felt like because I have seen La Traviata. Twice.
In the world of My Myeloma; a world where I do not feel well most of the time; a world where I take 40 pills a day to keep me moving; a world where I have to fight with my body at least five days a week to get out of bed; a world where I wear make up and wigs; a world where I control who sees me and when they see me; in this world, I think it is perfectly evident that I have cancer. Of course I would say that, I am with me all the time. I see and experience everything, objectively or not. It is my very personal and private journey after all.
One day, I hope to be able to block out the comments that frustrate me, or at least learn how to tolerate them. In the meantime, from the bottom of my inferior vena cava, I hope that you never look like you have cancer. Whatever than means.