Monthly Archives: September 2015

The Cancer Look

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.

EJB x

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How You Doin’?

How are you? How you doing? Are you okay? How are things? What’s going on? What’s up? How you diddling? Are you alive? Whaa gwaan?

The above are all questions I have had the good fortune to receive over the last few weeks, even the last one is real. As well as being a fine example of British manners, even the one that is an assault on the English language; I have considered each question to be a subtle reminder that I am failing miserably to keep my  blog up to date. Read between my non-existant lines and you’ll may discern a lack of energy despite the will, but that will only get you so far in coming to grips with the gravity of the question; how are you? 

In my silence, I have discovered that not only are there are a number of ways in which people can ask how I am coping in my post Transplant Number 2 world, but there are a number of ways in which I bombard myself with the same questions. I badger myself. I frequently find myself pondering  how I am, wondering if I am progressing and asking if this feeling will ever end? I am yet to receive, no matter the turn of phrase, a satisfying answer to any of my questions. One sided conversations are almost always, frustratingly unsatisfying.

There are many, many variations of answers to these questions about my mind, body and soul. As if it needed to be said, My Myeloma is anything but clear cut. My answers will change depending on the day it is asked and sometimes, there will be multiple, almost contradictory answers within a single day.  I can be something quite different at 16:00hrs to something I was at 15:55hrs. With regards to this blog, I have decided to provide all the answers in the form of a waffle. Mind, body and faeces. 

To get a grasp on how long it has been since my sister’s stem cells entered my body, to assess the progression, I  referred to something called a ‘calendar’ and discovered that it is 55 whole days since my transplant was completed. It does not feel like 55 days. 55 days of sleep, the hospital, waiting, vomit and poo. It doesn’t not feel like 55 days either; I just feel like I am existing in a volatile limbo where having a concept of time is an unnessary evil. This recovery nonsense is nothing but incredibly slow, and I see it as fortunate that I cannot remember one day from the next and last.

I am still nowhere near answering the questions laid at my door. Other than the ‘I don’t know‘ option, the short answer to these questions and the official party line is that I am  “doing as well as can be expected at this time; and there is nothing to worry about.” Shortly after my discharge from hospital, my transplant was described as “uneventful”.

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Well, that’s great then. I can wipe my brow, exhale with relief, keep my mouth shut and just continue to watch as my body learns to accommodate it’s new DNA…

Only joking, I may now partially be made of my sister, but this blog would not be mine if I just stuck to the short answer. Grab a cup of tea and put your feet up.

The long answer, the answer I prefer to give when circumstances allow, does begin with an “I don’t really know”, then it is immediately followed by one, big, fat “but…”

Apart from the words in my short answer, medically, I do not know how I am. I do not know how the transplant is progressing and I have absolutely no idea when I will know if the treatment has been successful. I knew the transplant would be followed by months of uncertainty, and I prepared myself for that, I just did not know it would be so difficult being completely blind in the matter. It takes an awful amount of mental discipline to stop myself from cracking under the pressure of the unknown, and the silence. 

Medically, I have been told not to worry about my case. My case. I have been told that it is discussed by the Medically Trained People weekly and I know that I should be assured by that. I know that I have no other option but to put my faith completely in the process and the people coming up with my care plan. I do not know how my blood results have changed since my discharge and thus my answers to these all important questions, cannot be based on any scientific or research led evidence, which is an adjustment for me. How I feel, and how I am, is completely separate to my results. 

The official answer, although it is an important and positive one, fails to adequately describe how I feel on a day to day, and week by week basis. In the absence of any clear medical conclusion, I can merely describe what I feel is happening to me and hypothesise what it can all mean. 

I am tired. I know I am always tired, but this post transplant fatigue is different to my previous dalliances  with fatigue. It’s almost always present and there is no visible pattern to when I am going to have more or less energy. I generally, just go to bed one day hoping that the next day will be better. Sometimes it is better, and sometimes it isn’t. Today for example, I have been able to write this blog, do some chores and potter round Marks and Spencer. On Monday on the other hand, I could barely get out of bed, I most certainly could not leave the house. 

Fortunately, I am experiencing less days like Monday and more days like today than I was seven weeks ago. How do I know? People tell me so, because I sure as hell do not have the memory recall, nor the distance to see that sort of progress myself. Okay, I can see it a little bit. I’m not limited to just five minutes of activity a day anymore. I do not know what my limit is, but there definitely is one.

I have surpassed some of my Getting Better Milestones. The first meal I made myself from nothing but ingredients occurred some three weeks ago, and I am now able to prepare at least one such meal a week. I have taken myself to the cinema and I have been on a train. The last train I got did not result in me immediately having to go to bed upon reaching my desination. These things may sound small, but to me, they are fine examples of me clawing back some freedom. I am yet to ride a bus, I do not feel fully confident in sleeping alone and I panic at the thought of a crowd, but I know that these milestones too, will be past eventually.

Before my treatment started, I was told that the recovery differed from that of an autograft. I was told that my recovery would not be one of slow and steady improvement, but one of unpredictable peaks and troughs. It is a warning that haunts me. My day-to-day ability to function my vary, but I dare say that if you saw me weekly since my transplant, you would say that I have shown gradual improvement week on week. I have gone from being able to do nothing but wash myself seven days a week, to be able to hold conversations longer than an hour at least four days a week. My fear, and thus my reluctance to comment on my health and my progress, stems from me  waiting for the fall/s. The fall that everybody warned me of, but nobody can or is willing to predict.

The fatigue may be my biggest drain and the headlining side effect, but there are more and they seem to all feed into each other. Are they a result of the transplant, a side effect of the 40+ tablets I take daily, a symptom of the all important Graft vs. Host Disease or is it simply the toll of three years of constant treatment? I am left to do nothing but guess.

I have gone from having to take six laxatives a day pre transplant, to no laxatives and a requirement for a mammoth supply of wet wipes. I do not know what is happening inside my body for this change to have occurred. I take a number of pills a day that constipate, so I dread to think what would be happening if my mobility was not so dependent on MST. Believe it or not, after 55 days, I still have not got my head around such a visible change.

My nausea is just as unpredictable as my fatigue. I take the prescribed medication and yet there are still days when I see the wrong side of my breakfast and even more days when I feel like there is a chance of me regurgitating more than just my words. Annoyingly, despite all the stools and despite the occasional vomit, my weight remains static. Joy.

I have self diagnosed neuropathy. Unlike the Velcade days of yore, when I suffered from dead arm and pins and needles, I now get all of that, plus severe pain in my fingers and toes whenever I experience a rapid change in temperature. It is a pain that takes the pleasure away from getting into a hot bath. The Medically Trained People tell me this is not an expected side effect from the transplant, and yet it started after the transplant and I  endure it everyday. Have I become a hypochondriac to boot? Probably.

Mentally, I am coping. You can say that I am also coping physically, but I feel like I have no control over the latter whereas I am in charge of how I deal with these obstacles and holt myself together. My brain and my feelings belong to me, everything else belongs to another power.

So that’s the long answer sorted. I can actually exhale now… No, hang on, I think I have something profound to say.

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In My Myeloma experience, I have never felt so detached from my treatment as I do at present. It unnerves me. It is not a feeling I planned for, nor want. I do not know what the caused it, but when it comes to all things allogenic transplant, I feel like I am nothing but a vessel. No, it’s worse than that, I feel like a specimen that is constantly being poked, prodded and analysed; a specimen who is seen but not heard; a specimen who is no longer a human being but is a sequence of numbers and test results. 

That is not something I have said lightly; it is not something I want to think, let alone feel. I’m impatient. I’m impatient for something and I don’t know what.

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So, after all that, be honest. You preferred the short answer didn’t you?

EJB x

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