Tag Archives: chemo

Six Weeks

It’s been two months since I last published a blog and let me tell you this, it has been quite the two months. After having this wretched disease for over five years, I thought little would surprise me. Well, I expected the whole looming death part to have a different trajectory to the routine I am used to, but as I said, I expected that to be slightly different. I never considered what the steps will look like getting from the relapse stage , to the end of the line stage. I always assumed it’d be easy but increasingly, I feel I might have been far too optimistic.
Somehow, in five years, I had settled into an uneasy routine with My Myeloma. It’s quite simple really, I would have some sort of treatment, which would work for a bit, then it would fail, then the Medically Trained People would somehow magic up another treatment for me to start, and thus the cycle would start again. 
I had five years of this. Don’t get me wrong, some horrible things happened along the way; it shouldn’t make the list, but losing my hair is still up there in the shitty events. I didn’t really enjoy any of my transplants and I definitely did not enjoy the time I had to spend five days in St Bart’s because I caught Influenza B. On the plus side, I thoroughly appreciated any drug regime that could be taken at home. I had a few of those.
What am I saying, all of that is in the past? If the last two months have taught me anything, and I am still trying to decipher exactly what further lessons I needed to learn by the age of 33 about my cancer, is, that Myeloma is a load of fucking shit that if there were a hell, it should be confined to purgatory trapped under a full, infected bed pan, never to bother nice (even horrible) individuals again. Oh yes, just to keep you up to date, I have also learnt about bed pans recently. And sick bowls. And those cardboard things that collect one’s waste by resting on the loo seat. I know it all.
On 7th September, I returned to UCLH for a clinic appointment. Prior to that I had found out that the trial at St Bart’s was no longer working and I had been experiencing what can only be described as extreme and unbearable pain that I had blamed on doing too much on holiday. The pain itself was predominantly in and around my right rib cage. 
As I had self diagnosed every relapse since 2012, I had spent about a month begging for some imaging. St Bart’s took no action, I would question if the staff knew my name, but thankfully UCLH did know my name and once they had the necessary images, man, did they take action.
I was admitted to UCLH immediately on the 7th September following an appointment, during which my family and I were told we were coming to the end of the line of treatment. Not only that, but there was also something wrong with my neck. I say ‘something’ because I think it took me well over a week to get my head round what a compression on one of the C vertebrae meant. I don’t recommend it. I don’t recommend developing a mass that pushes through your rib cage either, Alien (or at least that’s how I like to picture it) style. It cannot be sugarcoated. I entered that hospital with Mamma Jones and Big Sister in a bad way. 

And that bad way only worsened over the next six, that’s right, SIX weeks…

I don’t even know where to start. If you are independent, like to toilet alone and enjoy walking around, I’d say what followed would be your worst nightmare. It was mine. 

You may have deduced that not all was or is well with my spine. Due to the compression and the location of it, I arrived at my bed to be told that I was no longer permitted to walk. As in, no walking at all. Not only was I not allowed to walk but if I wanted or needed to be moved in my bed, I would have to be rolled by four Medically Trained People. My head and neck, could not be elevated anymore than 30 degrees. Three weeks later, this changed to 40 degrees and the news that I could roll myself, but by this point, the damage to my ego had already been done. Not to mention the damage to my legs for not walking for three weeks.
Despite being in denial about it, shitting is a necessity that eventually cannot be avoided. The day I could not avoid it was Day 11 in hospital when there were only male nurses available. I’m a 21st Century Woman, so I went ahead and let the team of four roll me onto a bed pan. I did not say anything when they had to roll me again to clean my bum. Nor did I say anything the next day, during one of my five daily bedsore checks, when a different Medically Trained person discovered a lump of faeces stuck in my bottom from the previous day. 

That was a low point.
Washing myself alone, was and remains impossible and for the duration of my stay, washes were restricted to hand towel baths in my hospital bed. If I was lucky, the Medically Trained Person cleaning my nether regions might have even shut the window to my room for some privacy. Due to staff shortages, during the last week of my stay, no washes were offered and I went a week without being cleaned. Needless to say, washing hair is extremely difficult and something that has happened twice between the 7 September and now.
Thankfully, due to what I like to call ‘performance issues’ I was given a catheter for the first three-four weeks of my stay. After that, I relied on my good old pelvic floor muscles to stop me from soiling myself. How can that be when you cannot walk, I hear you ponder? The answer is long, boring, excrutiatingly painful and another blog post. In the interim however, you just need to know that I have a full back brace, handcrafted to fit my body and imagined perter boobs, which I am allowed to wear to mobilise. 
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This really is a story of never ending gibberish. Maybe grab a cup of tea. Have a wee break. I’d have one with you but my mouth is currently tainted by the delectable taste of 60 mg of steroids per week, so I am only able to stomach the taste of fruit juice. 

Where was I? Right, my health. In addition to the bony stuff, the really smart Medically Trained People had to find out what was wrong with me and if there was anything that could be done about it. This period felt like it would never end, with the feedback I was getting changing nearly everyday. I’m not going to regurgitate all of it, just trust me when I say it was very confusing and everyday resulted in me hysterically crying and Big Sister getting angry. 
I lost count of how many CTs, MRIs, ultrasounds and x-rays I had, but I know it was a lot. It was not uncommon to be collected by the porters, without any clue where I was going or why. I knew where they were taking me on week one, when I had five fractions of radiotherapy to heal my ribs, but as for the rest, it was not like I was in the strongest position to argue or question. I simply did.
Things went downhill relatively quickly. By Day 4 I had tested positive for Paraflu, which gave me a chest infection and resulted in me being relocated to an isolated room on a ward where the staff are nice, but significantly understaffed. One night, I rang my bell for 2.5 hours before I saw a nurse. On the plus side, it meant that I had my own room with a nice view over London. A bonus when you consider the fact that the woman opposite me on the shared ward addressed me as ‘Emily’ and wished me well. 
The hardest part of having the lurgy was that I did not see somebody without a mask on for five weeks. Talk about dehumanised. 
The chest infection persisted, so for extra buoyancy, I also developed sickness and diarrhoea and a temperature. It was lush. 

Notice how I am yet to mention My Myeloma? There’s a reason. My Myeloma failed to behave in the manner of which I have become accustomed. For the first time since I was diagnosed with the wretched beast, I was afraid of it. It wasn’t behaving how I have known it to behave. My paraprotein was the highest it had ever been, and no matter what drugs were tried or the volume of fluid pumped into me, my calcium would not shift below 3.0.

And still I carried on. It may be the biggest test of my willpower and personal strength (because I really have no meaningful life until I am rid of the brace), but I unequivocally told the Medically Trained People that I am not ready to give up with my life yet. As long as the treatment maintains a reasonable balance between quality of life and those dastardly side effects, count me in. Sign me up.

I’m not ready to die yet.

Unfortunately, we soon ended up spending some time thinking about my death. I completed my will and paid for my funeral. Once I was fortunate enough to be on a reasonable treatment regimen, I suffered from what I now believe to be called an Acute Kidney Injury. At the time, it was badged as something far graver than that. I cried for what felt like days. I got so angry with My Myeloma, I told it I hated it. I begged for a reprieve, identifying many people other than myself who deserved the award for ‘Most Deserved Recipient Of The Most Stubborn Myeloma in This Fair Land.’ I really am not saying that other people deserve this illness; I was just surprised to learn that I had not come to terms with the fact I have it. Death seemed so much closer than before I walked into clinic on the 7th September. I don’t know when it will come and that’s the scariest part. How long is my piece of string?
My need for tears grew when I was taken off my morphine, which I had taken in slow release form everyday for five years. There were nightmares and ticks, to accompany my sickness and diarrhoea. I won’t lie; it was a tough, sleepless few days.
Do not fear, I will not prolong this anymore than I need to. They require near constant testing, but for the moment, my kidneys are behaving. It took a week or so for them to turn around. For how long they’ll stay in this state, only time will tell…

Six weeks after I entered UCLH, on 19 October, after a lot of pushing from my family, I was discharged. Gone were the at least daily bloods, out with the cannula resulting in the constant beeping of unanswered alarms. Goodbye to the four hourly observations, even at 3am. Welcome to sudden and ill prepared loneliness with an absent of nurses. So long institutionalised regime. Hello privacy. After six weeks, I am to fend for myself once more. 
Just between us friends; It’s fucking terrifying.

The view from my hospital window

EJB x
P.S. New treatment regime (Velcade twice weekly for three weeks;20mg Dexamethasone the day before, of and after Velcade; Veneoclax eight pills daily

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Pleasure

I have been pondering in recent months the following question, it’s a question that goes round and around my head until I am down the well worn A road wondering about the point of my existence. It is a question that comes without innuendo despite the way I have decided to word it. It’s a question where to answer in the negative terrifies me.  The question, my friends is ‘can I experience pleasure, anymore?’

I suppose I could have substituted the word ‘happiness’ for ‘pleasure’, but I feel happiness is something that can be temporarily achieved in a 22 minutes episode of Modern Family. Pleasure, to me anyway, is something else. It’s prolonged and it involves satisfaction. Something meaningful that isn’t transmitted through my television. 

It has been a long dark autumn where I have felt that all pleasure and all opportunity to feel pleasure; that the function for which has been removed from my brain. I don’t laugh anymore. Long gone are the days when the innuendo sort of pleasure was met; melphalan and menopause put paid to that years ago. I’m not worried about that. To the all encompassing sort of pleasure of which I yearn, I don’t know what it should feel like anymore. How much did I really laugh before?

There are many days when I find myself waking up, knowing that the day ahead is going to be much the same as my previous day, and as with the day before, I will spend it going through the motions. Not emotions you understand, just motions. 

I don’t have a job, I get tired washing myself, there is not a higher purpose to my life most days then just taking my drugs, patting the dog and making sure I am out of the bed before Housemate gets home. I don’t have the functionality to do anything else.

I suppose, I do the absolute minimum to survive, especially on the days of steroid crashing and Ixazomib spewing. I wake, I sit, I eat and all to the soundtrack of my television. 75 percent of the time, I could not tell you what I have watched from one day to the next. I probably could not tell you everything I have watched today. 

On the days I can move further afield, I do the things I used to do that entertained me. Except now, they have to be done within a very tight social security allowance budget,  pass the necessary  considerations (constraints) like walking distance, seating and distance from home, before I can even leave the house. Evidentially, there are a lot of things I would wish to do that I cannot. Despite these obstacles, I do, somehow, manage to pass the time.  The most common feeling I get on return from any of these jaunts is, exhaustion. 

💊💊💊

Is it the Larozapam my brain asks? Is this indifference I have allowed to develop towards my life due to the multi-use drug I take to prevent nausea but others take for sedation and anti anxiety?  Or, is it one of the other 12 different medications that I swallow on a daily basis that has stopped me being able to feel? Have they brought this shield down that I cannot penetrate, and the weight of which leaves me all so very fatigued? Internal feeling of apathy, anyone? 

Of course, there is another theory. This one might be my favourite. I wonder if I no longer feel pleasure because I do not want to feel pain. Have I, since my relapse put myself in to an ultimate self preservation mode? Should I patent it? If I cannot laugh and feel happy, then surely that’s a decent payoff to not feel constantly scared and alone? For four years with My Myeloma, I was waiting for something positive to happen, it didn’t.  The sad truth is, I am now waiting for the ultimate bad thing to happen and I am praying that that does not come too soon.

Bar one week in October, I have not had a midweek outside of my bed  since I started my current drug regime five cycles ago. It’s an enslaught. Any strength I build up in the days pre drug crash, is depleted on the first day post my Dexamethasone and Ixazomib dose. Then with each day that passes, my reserves run lower and lower. Concurrently, for every time a loved one forgets that I cannot do anything on a Tuesday or Wednesday (and possibly Thursday) and then they invite me to do something on a Tuesday or a Wednesday, I go into the red due to my frustration, anger and plain old green jealousy. My life is lousy enough without having to repeat it five times a week.

In my last blog, I spoke about death. Not because I want to die, but because I fear that is what is left for me now. I hope it is not imminent, but all that depends on a variety of factors I have no control over.  It’s not the place or time to discuss these things in this blog, but I saw a figure a few weeks ago. A potential timeframe, and I really don’t have the capacity to think about what that means for me or for those in my Support Network, and if it is possible to balance that with the quality of life I have now. There are days when I would feel better off. 

It’s becoming incredibly hard for me to consider myself as anything other than an expensive perishable with a limited shelf life. Sure, I am Emma, I am EJ, I am me; but what does that mean now when so much of my identity has been erased? Most the time, I feel like a stranger to myself. 

Am I lacking pleasure because I am still the pre Myeloma version of me, just significantly shorter with less limbs, whilst everybody around me has managed to grow, some have even gone as far as to grow whole new humans in the four years that I have had this wretched disease?  

I was once told that my situation was too depressioning to be around frequently, so the easiest thing for somebody to do was to cease all communication and live their lives independently of mine. Understandably, I  worry about this becoming my legacy because I will not mprove now. Everybody wants to be around you in the first year of Myeloma; the numbers dwindle somewhat thereafter. 

The insecurities this has left me with are profound. I  try to avoid talking about myself (she says in a rather lengthy blog about herself and rolls her eyes) as much as possible. But then, what else do I have to talk about? I’ve already said I don’t have a job and I don’t remember what I did yesterday. Has my monotony made your pleasure disappear? Have I made you runaway yet? 

🏃🏻‍♀️🏃🏻🏃🏼‍♀️🏃🏼🏃🏽‍♀️🏃🏽🏃🏾‍♀️🏃🏾🏃🏿‍♀️🏃🏿

There you are! 

Did you know I had a point at the start of this blog? It wasn’t that I am a bad editor,  because I think I have proven that point with what I have written above. No, my point was that my pleasure has not been lost in self pity. I have recently returned from a much needed two week break away from my medication. I currently have no idea what that two weeks away from medication has done to my body, but I know what it has done to my mind. It’s called perspective my friends and a dark cloud has been lifted. Not eradicated mind, lifted. 

It’s harder to see and it’s harder to earn, but believe it or not, I do still experience pleasure. Not the innuendo kind unfortunately, which makes my four weekly pregnancy tests quite the waste in resource. 

👏🏻👏🏼👏🏽👏🏾👏🏿

I lost sight of my pleasure for a little bit; for five months in fact. I lost it all to fatigue. Fatigue has literally been ruling my life and I cannot emphasise this enough that fatigue is not just restricted to feeling sleeping. For me, everything slows down, everything becomes harder and everything whether it is an email or an existential crisis, seems a  much larger issue than it actually is.

Looking back, there were hidden and frequent pockets of pleasure throughout the last five months. The windows to enjoy myself are smaller and further apart but pleasure can be found and it has been experienced. By me. 

To emphasise my point, here are a few examples: any conversations with my nieces, being a party to Treat Yourself Sunday, talking Christmas wrapping with Big Sister, watching a movie at a friend’s house or maybe, just maybe bending the rules a little bit and staying out past midnight once in a blue moon. Or, it could be something as simple as saying goodbye to somebody and walking away with a smile on my face and a spring in my step. It’s in knowing that a friend cares enough about me to swim a mile a day for 26 consecutive days to raise money for Myeloma UK (https://www.justgiving.com/fundraising/Emma-Boucher-Matthews). It’s going to the cinema whenever my body allows it, not falling asleep and writing about it in my little black book. 

In October, my some miracle and a little bit of understanding from the Medically Trained People, I was able to once again attend the London Film Festival 15 times in spite of my treatment. I got dressed and put makeup on everyday. I felt learned and alive until I got tired and had to spend a week in bed once it was over. I did not end up celebrating the 10 days I spent enjoying the festival, I wallowed at how quickly my body went downhill.

Most recently, I went on a holiday. An actual holiday. With a lot of help from Mamma Jones, I used my passport and I opened my eyes. From the minute we left these fair shores I experienced pure pleasure.  The holiday gave me a swift kick up my derrière, and reminded me there is pleasure to be found everywhere. Even when the prognosis might not be what I want it to be. I need to find a way to remember this the next time the tough gets going.

Above everything else, I need to remember that my life is not a foregone conclusion yet, and I should not be treating as if it is. And,  in the words of Uncle Albert I also need to remember that  ‘I love to laugh. Loud and long and clear’. I really do want to be a merrier me.

EJB x 
P.S. There is still time to sponsor my friend’s marathon swim, which she completed yesterday. Just use the link above. 

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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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Bon Anniversaire

Today marks three years since Myeloma officially came into my life. It’s three years since that junior doctor cried as she sat at the foot of my bed whilst she broke the bad news to my family and me. Is it an anniversary worth celebrating? No. It is however a significant milestone in my life and one which marked for better and mostly worse, a permanent change in the life of Miss Emma Jane Jones. Put it another way, the 17 August 2012 was life changing. And it wasn’t only life changing for me.

Since that date, I have been given a whole set of new dates to remember, celebrate and dwell. My first transplant on the 17 July 2013 for example, but that failed, so it was not quite the rebirth I advocated at the time. Then there was my second auto on 1 April 2015 and then my Allo on 23 July 2015. Only time will tell if the latter dates are ones worthy of celebration or just dates of mild significance. Mind you, the date my DNA changed will always be fairly significant won’t it?

For me though, this anniversary is the Big One. It’s the one that started everything off and although I wasn’t given the formal diagnosis until three days later, the 17 August will always be the day I got myeloma. The day I got myeloma. A ridiculous notion really, because my vertebrae did not fracture on that date, and the paraprotein did not suddenly appear in my blood on the 17 August three years ago. It is the date I knew why these things were changing in my body. It is much like my birthday, except with far more adolescent longing. On this date, I can feel melancholy and I can feel slightly sorry for myself than usual. I can, if that way inclined, try and recall the best and the worst of my three years, the highs and lows of each of 1095 days, I have fought through. And it is a fight, people may be trying to soften the vocabulary, but for me, I see this as a fight, a really, really big one.

Of course, you can see and feel the date differently, which I occasionally do. For as sad as my diagnosis was and as much as I do not want to have myeloma, the 17 August is also the anniversary of me growing up. My Myeloma has forced me to do many things I have not wished to do and experience,  but it also forced me to become an adult. Not the adult I once envisaged with a mortgage, children and a shed; the sort I am jealous of now. I am an adult who is forced to sponge of the State and her parents, but I became an adult nevertheless. I look at my contemporaries and sometimes I think to myself, ‘how would you have managed it?’ It’s a question without an answer, and it is a question I would not wish upon anybody ever having to find the answer to. I do not like myself for thinking it, but even when I think about that question in relation to me, I question how I have managed it all, and I am proud of myself. Even at the moment, when I seem to question daily my strength to continue with my allo treatment, I am proud of myself for coping. I think us myeloma sufferers deserve far more kudos for merely coping. I bet you any amount of money, because I do not have any money to make any sort of meaningful bet, that three years ago, I would have thrown anybody out of my cubicle if they dared to say that the 17 August would be a date that I would eventually be proud of. 

Even though my pride only accounts for some of my feeling towards this day. My diagnosis was the making of me. 

It was indeed a Big Day. 

I could do what I have done in previous years and list all the treatment I have endured in such a short amount of time. I could go through the physical side effects I have experienced many times over and have been forced to become accustomed to. I could even talk about how long I statistically have left in this world,  but I will not be doing any of that today.  This year feels different to me. Maybe it is because I am no longer at UCH and things seem temporary at St Bart’s. Though, really My Myeloma feels more than just the facts and the figures. Since my last anniversary, I feel like so much has changed; I do not know if it is a tangible change or just a non-drug related feeling in my gut.

Perhaps, prior to this last year, when I embarked on a nine month treatment programme followed by two SCT, I believed nothing had really permanently changed. I mean, I knew things had changed, but there was a part of me that still believed that my life could at some point at an unknown time and date, just slot back until place. I know that will not happen now. My 13 months of near constant treatment shown me that.

Until this last year, I also believed that I had a well established Support Network in place. I believed that all the perceived letting down I had experienced in that first year, was the only letting down I was going to experience in My Myeloma journey. My relapse last June corrected that misunderstanding. I feel far more let down post relapse than during any other time during my illness. Make a leaflet about that Myeloma UK, some people, those without myeloma, just cannot handle the fact that myeloma is a cancer that is chronic. That it goes on forever.

It is a strange thing to say, when I feel so well supported and loved now, but I have had to grieve the fact that some people got bored of my cancer and thus they got bored of me. It felt like they had tasted and enjoyed the 11 months of freedom remission had given me, and thought that taking it all on again with another relapse was too difficult a task to take. My stock went down. There were some people who made promises of support and friendship, not always actual promises you understand, but their presence alone throughout the early days of my illness, made me naïve enough to believe there was  something special and enduring in place. A promise of friendship. All I would say of this to anybody else in the same position as me, is, be warned of the glory seeker. When I am stuck in no man’s land, where there is no guaranteed end in sight, and the cancer keeps coming back along with my unpredictable fatigue, and those around me are moving on because they can, people and their promises can disappear. I have seen many of those promises, accompanied by those friendships end up on the proverbial scrap heap. 

It’s made for a difficult year and one where I have had to learn to stand on my own two feet. Fortunately, there is a flip side to this and if my relapse had taught me anything, it was who I could trust to stand side by side with me, as my treatment and their lives continue to develop. It does not always have to be either or, even though I am still prone to bouts of paranoia on this subject. Let’s not kid ourselves, I’m only physically well rounded. 

My relapse showed me that early on in my treatment, I made mistakes. I criticised my friends’ behaviour, in some cases I did so publicly and I regret that now. They were struggling like I was and they showed their struggle differently to how how presented mine. In the last few months, I have seen so much evidence of the support I have during my transplants, that I feel confident that even on my lowest days, I’ll have at least one person willing to pull me through the darkness. We just need to work on how I let people know. 

As it currently all stands, I know that My Support Network is well founded and passionate. It is mine, it is invaluable and I know that it is built on trust, even though I do not get to see its members as much as I would like to and I am pretty certain that is a feeling that works both ways. Rather strangely, or should that be tellingly, My Support Network is made up of people I have known for years either because they are related to me (obviously) or because they have had the good fortune of being my friend long before I knew what myeloma was. It has taken a while and the occasional misunderstanding, but I know who will be there when I need them. Some people will need to be asked for help and others won’t, but that is just the way things have always been and thus, it is the way things should be. I just wish there was more I could personally do to make my friendships equal again. Homemade cards only get me so far. 

Anyway, on the subject of my Support Network, I am making myself blush and as you are not all on anti sickness pills like me, I will put an end to the subject soon, I promise.  I could have just said what I am about to say five paragraphs ago;  My Support Network is irreplaceable. It may be irreplaceable, but crucially, my personal strength and journey through My Myeloma should not be defined and determined by it, and post relapse, when the droppings happened liked flies, I had to accept this the hard way and quickly.

My ability to cope with myeloma, is a much broader achievement than my Support Network. I personally, will always feel isolated by my illness and I have spent three years learning how to cope with this. I do not have all the answers, but I have more than I did last year, so who knows what I will be saying next year? And the year after that? And the year after that? 

Last night, as I was trying to drift off to sleep, I began to worry that with three years of near-constant treatment, there was a possibility  that soon, I might not have the strength to continue fighting should my current treatment fail. My current treatment, which I am nearly halfway though, is not exactly a walk in the park and trust me when I say, I have many a down day. I am fully aware that I will have more down days over the next x days. I will fail to get out of bed a few more times, find myself physically unrecognisable and cry over missing events with my  friends. I worried so much about my occasional thoughts of giving up, that I envisaged quite a different blog to the one you are currently reading. 

I haven’t only experienced treatment, relapse and drugs in my third year of myeloma. In the last year, somebody dear to me lost his fight against myeloma. He became dearer to me, selfishly, with my own diagnosis three years ago. He was somebody who I never saw being remotely negative about the bastard that is myeloma apart from rebranding Velcade, “Cillit Bang”.  I fear negativity is my default position the minute the going gets remotely tough. His eldest daughter also gave me an invaluable crash course in myeloma and continues to offer me considerable patience. Her Dad did not have a sibling donor and thus could not have an Allo SCT, instead  he had two auto SCTs and several other treatments such is the norm for current myeloma treatment on the NHS. He was given velcade and among many of the things, he suffered from steroid insomnia. He did not know it, but he was My Myeloma rock, and the only other person with myeloma I needed to know. My current treatment is the first treatment I have had that he did not have in some incarnation or another. I remind myself that I  feel poorly because I am lucky enough to have a sibling donor, and last week when I couldn’t get out of bed, I thought about him and his family, (and not because I had just watched The Man With The Golden Gun remembering a holiday we had) and I got out of bed. That’s all I really want to say about that. 

Three years after my diagnosis, in the middle of a transplant where I had to sign to say I was aware of all the risks that could happen during it, I am ever aware of my life and the chance of my death. I am also ever aware of the chance of my death being further away than the statistics that I will not talk about, and current literature would suggest. 

It’s been three years of changing and developing treatments and a changing and developing me. I don’t know how to end my acknowledgement of my anniversary, so I am just going to say goodbye and thank you for reading my blogs. I promise they will continue.

EJB x 

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Like A Bullet From A Gun

WARNING – 💩THIS BLOG CONTAINS TALK OF FAECES. HARD, SOFT AND SHAPELESS FAECES.💩 SO DON’T READ ON IF YOU HAVE A WEAK DISPOSITION. IF YOU DO READ ON, BE THANKFUL I HAVE NOT MENTIONED MORE.*

One of the biggest challenges I am quickly trying to come to terms with is the change the transplant and it’s drugs are going to have and have already had on my toilet going activities. I have spent nearly three years complaining about the impact my previous treatments had upon my bowel. Nay, it is more than that, I had publicity reconciled myself to that fact that unless something was drastically wrong with my body like a course of radiotherapy through my stomach or a hefty dose of Melphalan, I had a life of overly formed, every other day excretion with constipation ahead of me. I understood that and I knew how to manage it. Maybe I had even come to like it. At least it was predictable. Ghostly. 👻

Since my release from hospital however, I have been forced to discuss the taboo that is poo, to avoid mass panic and hypochondria. My mass panic and hypochondria. I can feel my body changes and I am on high alert for it and this is outwardly, the biggest change thus far. Gone are the instantly satisfying rabbit pallets, and in with what I do not know what. I could not make my way through the consent or any of the transplant literature without coming across the word ‘diarrhoea’, so the sudden change is not unexpected. It’s just unwanted. And so are the new definitions. 

I could go deep into my concerns and summarise the many conversations I have had with the Medically Trained People about why investing in some nappy rash ointment is a good idea, but I think the conversation below sums up my current dilemma.

  
Such is the importance of stools in this post allo world, I have to inform the Medically Trained People if I have more than two sessions in a single day. Manners would usually dictate not discussing this with anybody else, let alone the out of hours hotline. 

On this subject of toilet, I am beyond cautious. You can tell nurses in particular are used to this sort of talk because my nurse on Monday compared the consistency and colour of her breakfast drink to what I need to be on high alert for, whilst she consumed it. Take that Weetabix. I welcomed the clarity. I have sample jars in my handbag, should there be a sudden need for analysis. I am not actually going anywhere requiring a handbag at the moment, so the fact the jars are still in my handbag are a testament to my current energy levels.

Earlier in the week, I came across the notion of ‘constipation overflow’. If you are interested, that is what I have by the way. Constipation overflow. There is no need for the nappy rash ointment just yet.

The sad truth is, despite my panic last week, I haven’t experienced diarrhoea yet. My friend would be correct with his definition of a ‘loose stool’. For me, this is just another unpleasant experience and it is one that realistically is only going to get worse. Another reason why I must remember my fluids!

The diarrhoea will come and come it will and when it does, I’ll put on my rose tinted spectacles and look in my medicine drawer at my Sainsbury’s own brand suppositories with yearning.

What a depressing thought. 

EJB x

* Humans do Number 1s too, and they are not immune from the allo side effects either. FYI

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Catch & Release

It has been seven whole days since I was told that I could go home and indeed, went home, leaving my week stay at St Bart’s but a distant memory. The latter part of that sentence is total bollocks by the way, the schedule of an allogeneic SCT, even if it is just a mini one like mine, makes it next to impossible to pretend that the hospital is just a misty water coloured memory in the corner of my mind. In the seven days I have been home, I have been to St Bart’s twice and in touch with them via phone or email on three other occasions. Essentially, I have been in touch with said hospital every working day since I left it. 

My bloods might be going in the right direction and the medically Trained People are making all the right noises, but did I leave there too soon? How the heck should I know? I spent all of Monday in hospital being tested for bugs and slugs in isolation, because they was a question over my current health.

If you were to speak to me or see me over the last week, you would probably conclude that I did leave too soon.  On Monday, a Medically Trained Person was asking me complex questions like “what was the date of your transplant?” and “what did you do before all of this?”, and I felt like I was taking my French oral GCSE without revision. All I could do was apologise that I could not speak normally. Essentially, you are looking at slow, occasionally drawling slur.

I have had two stem cell transplants before this, they were autos, meaning the cells were my own and the recovery was hard, especially after the first one. All so very hard. Upon discharge after both transplants, I got into a car and went straight back to Mamma Jones’ to be looked after until I felt like I could take a stab at doing it myself. My current treatment regime does not allow for that sort of leisure. It barely allows for sufficient rest.

Upon leaving last Wednesday, I was told that I needed to return on Friday or Saturday and then again on Monday for a Doctor’s appointment, leaving little time to make the four and a half hour round trip journey back to the Fens. And so, I decided that I would stay in my flat, with Housemate to help me until after the appointment on the Monday. There are many things one could say about this decision, but for today at least, as I continue to struggle to find my words, let’s just say it was decision most ‘foolish’. 

I am incapable of looking after myself. I imagine that is a fairly difficult statement for any 32 year old to say, accept I am 31 (the proofread) so I will say it again because I know it is hard for me to say; I am incapable of looking after myself. I am also incapable of planning anything, following a plot of any kind, having a prolonged sleep without experiencing a nightmare and not missing my friends.

I knew these facts last Friday, when with my bags still packed from the hospital sitting in my hallway , I phoned Manma Jones crying because my hair had started to fall out and I needed an hour’s lie down post shower, pre dressing in order to make myself presentable for blood tests. An hour after that I spoke to Big Sister and three hours after that she was at my front door ready to drive me back to the house of Mum Love. That night,  100 miles later, my mother needed to help me into my pyjamas. I then spent almost 23 hours of the next day sleeping. I did something quite similar yesterday, although yesterday, I only ate when food was presented to me at 18:10hrs. The previous day, after nine hours in the hospital, I realised that I had forgotten to eat anything at all. 

In hindsight, thinking that I could look after myself straight after receiving seven days of round the clock care, was just bonkers. Of course I have a Support Network in London led by Housemate and Bruce, but one of them is not anatomically capable of putting me in my pyjamas and the other one would be mentally scarred by the concept. Essentially, London assistance isn’t the same as the one I get with Mummy. The people of London have no reason to stand by me when I scream and shout and let it all out, and if I were being perfectly  honest, I will always try my hardest to avoid too many people seeing me at such a low ebb. A location I have been flirting considerably with this last week. 

I am trying not to overthink the situation because I know there is no turning back now and I also know how fortunate I am to be in this position in the first place. I just wonder that if I am finding this transition so difficult now, how the devil am I going to manage when the real thing gets started in a few weeks time? That’s rhetorical.

Some of you may be fortunate enough to have never been an inpatient in a hospital, so let me tell you that whilst in hospital one has little to no privacy even with the privilege of a private room. The NHS, the wonderful and flawed NHS, pays people to create and deliver a care plan, cook and carry  three questionable meals a day, waters you, takes your blood, check your pulse, breathing and blood pressure, prescribe and deliver the correct drugs at the right time and ensures said drugs are swallowed, they change your bedding and clean your room daily and these are just the people you see. Those tubes of bloods and tubs of my urine had to go somewhere, to somebody to check and the results put on to a computer, even if I wish these tests were done with greater haste. My point is, when one is an inpatient, all they have to do is try not to get too irritated by the lack of privacy. Everything else, even if it is not done to a quality one is quite used to, is done for you. One Sunday, for example, the threshold to my room was crossed 47 times in a 24 hour period; 45 times by Medically Employed People and twice by members of my Suppork Network. I do not know for what reason I documented this, but I believe it validates my next point.

  
The minute I walked out of the East Wing last Wednesday afternoon, all the responsibility for doing all of those listed above bar the things done by those unseen technicians handling my bodily fluids,  fell back on to me. It fell on to a me who continues to be nowhere near capable of doing such things alone. I can barely remember to drink, let alone to prepare the food I do not have the energy to eat, and remember to take the 20 odd pills I am prescribed each day at the correct intervals. And then there is cleaning, I attempted to lint roll my pillows today to remove evidence of my shedding hair and Inhad to do it in four separate sessions.

I went into my treatment with my eyes wide open. I knew it was going to be difficult, but I did not think that I would be doubting my ability to see it through so early on. A friend said to me earlier that I had rhino skin, which I sincerely hope is true for no other reason than all this treatment is actually going to make my skin thinner. Not just metaphorically thinner, but old-lady-be-careful-with-the-plaster-thinner. 

I think I just need a few weeks in bed to rebuild, but that is not afforded to me. 

My transfer to St Bart’s seems to symbolise much more than a change in venue for my treatment; everything seems different and all of it seems out of my control. Even though I may allow myself the occasional daydream that this time next year ‘I could be normal’, I am also a realist. I know that what is still to come is going to be so blooming difficult and I’m struggling to see where I am going to find the strength from to achieve my goals. My treatment feels relentless. This is relentless.

Prior to my discharge last Wednesday, I was asked to read an 79 page leaflet from Anthony Nolan called ‘The Seven Steps: The Next Steps’. I knew the contents of it, but I do not know if on the day I was getting to go home after spending a week in a drug fuelled neutropenic haze, I needed to read “it is important to remember that although you are being sent home from hospital, and an important phase of the transplant process is complete, it will be many months before you are fully recovered”. Define ‘many’.

The treatment is intense and I have not had find time to catch my breath. Reading that leaflet seemed to have cast a spell over my whole week. I do not normally feel so negative. That leaflet basically said, don’t relax yet, for the worst is yet to come. 

EJB x 

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Special

I have always known that I am one to stand out from the crowd, if said crowd were located on a catwalk. I have always known that I am special, even when I pretend I am
not and that was true long before I had myeloma. I am clearly always looking for evidence to prove that I am both right and special, in case somebody was ever to call me into question. Such evidence also feeds both my confidence and my ego, so I am eager to discover it no matter how tenuous the link.

So imagine my delight on Tuesday when I looked at the treatment board to find that I was special and I was standing out from the crowd. I was so happy about it, I took a photo.

.

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Proof

Of course, one could say that the reason my name was singled out was nothing to do with me being special. They might simply say that I was the last person to be treated by that section in Daycare on Tuesday afternoon. If they were being accurate, they would say that I was not the last person booked in on Tuesday. I had the last time slot of the day, but that does not mean that I was the only one to arrive at 15:00hrs. I probably was not the only person to wait 75 minutes to be seen by anybody either; it was very busy after all and that meant I had to sit in the greenhouse on an uncomfortable chair again (seriously guests of patients, give up your seat to patients, it is not hard). I was however, the only person on Tuesday afternoon not to have had their Velcade waiting for them . Not only was my medicine not ready for me, it had not been made. The discovery at 16:20hrs, meant that I had to wait for another hour whilst the pharmacy worked their magic. It was an unfortunate fact, especially as my attendance had been confirmed just 24 hours earlier. I did remain remarkably philosophical about the three hour treatment time and I used said time productively, for which I am sure my employers are most grateful. Back to my first point, as I am not the only person to have been delayed in this way, you could argue then, that I was not and am not special.

It’s a tough call. >

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Regrowth IV

Relax! I know it has been a while, but it is fine, you can relax, my hair continues to grow back. My new hair is not relaxed. It is a curly mofo.

I am a cancer stereotype and my hair has returned curly. It is also thick, but that is no surprise, because it was coarse horse hair before anyway. My favourite party trick at the moment, designed to entertain myself and myself only, is to carry pens or pencils in the curls. I might experiment later and see how many I can fit in there. My head is rather large after all, so I predict I can hold at least three. I’ll let you know. Telepathically.

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Mamma Jones spied on these photos yesterday and appreciated the curls

I have been forced to discover that curly hair requires a different sort of maintenance than long, dark flowing locks. Curly hair does not like hair driers, nor does it enjoy being touched in general, which is difficult for me because I am always looking for something to stroke, even if that something ends up being myself. Anyway, both of these activities result in me looking like I have a single block of brown candy floss on my head. I was advised by the Macmillan Hair Lady to treat my hair like I am of a different ethnicity, and that I am doing. I had to do a Google search. This includes liberal applications of oil. Word of warning, do not touch any fabrics directly after applying for obvious reasons.

I am amazed by the speed in which my follicles are growing. As an exercise in narcissism, I just looked at some photographs of myself from the start of January and I am surprised by the growth. It’s a talking point. I can guarantee that somebody will mention it to me today. They’ll be surprised by the curls, just like I am. I will then have the same conversation with another human being. Mind you, better they comment on my head that my weight gain. Gross.

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Until Part V, this is Hair News signing off.

EJB x

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The Littlest Things

Yesterday, I decided it was high time for me to tidy my drawers, because I Housemate did his, and I felt like even more of a sloth than usual. I would like to confirm that I am lying in my bed as I type and I can confirm that
I am glad that I took the time and energy to do this. As I was doing the deed however, my emotions were mixed.

My drawers are a set of six, which sit to the lefthand side of my bed and house the things that do not need to be on show. Catch my drift? There is a jewellery drawer, a make up drawer, one and a half drawers of mementos, a draw of toiletries and other things one can purchase from a chemist and the remaining drawers are (were) drawers of crap. The whole clean up accounted for one dustbin bag full of crap.

As, I opened the third drawer down yesterday evening, I found something, or should I say, somethings, that I have not required for a long time and consequently forgotten were in existence despite them coming in a range of sizes and brands occupying the majority of the drawer. It then dawned on me, that I would not require them ever again, and as I thought about what not needing them ever again meant, a teeny tiny tear fell down my face. And then a few more followed.

In this strange remission world, especially in the one where I try and remain positive, I avoid thinking about the things that have changed since I was diagnosed and the things I have lost since I was diagnosed. Sometimes unfortunately, even when you are doing the most practical of things, they just creep up on you, at least they do on me anyway, and when that happens to me, all I can do is give myself a minute or five (ten).

I gave myself five minutes to think that I will never again be caught short when out and have to ask a female friend or worse, a female colleague,
an embarrassing question. I gave myself five minutes to remember what it was like for my body to act like clockwork every 29 days. I gave myself five minutes to curse the hot flushes. And I gave myself five minutes, because all of the above means that I cannot have babies.

I then cursed myeloma.

Once composed, I stared into the drawer some more before I scooped up the contents, which included two half full boxes of the same thing, and put them in my black bag. I then left my room and was told about some of the benefits of not having to stock up in Boots every month.

Other things in the drawers that also contributed to a wee bit of insomnia and yearning for a simpler time last night, included;
• Hair bobbles (I thought I had dispossessed of them all)
• 2 x paddle hair brushes containing long brown hairs, which I felt the need to finger
• Prophylactics
• Old photographs

On the plus side, I was reminded that myeloma has significantly increased the quality my remaining toiletries and thus, I am unlikely to need to purchase any moisturiser any time soon (shower gel and bubble bath on the other hand…).

EJB

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Regrowth III

Last night, in my not so sweet dreams, I dreamt that when in direct sunlight, the hair on my face appeared to be much longer than the hair on my head, I’m talking male hipster length of beard. It was a megamix of the Twilight franchise. Fortunately, this excessive hair only appeared when I was standing in the sun or on those frequent times when I stand under a fluorescent light. Let’s face it, this was not a dream, it was a nightmare. 🙀. Halloween came late for me. The scariest thing about my nightmare, is that I knew that the bristles were there, poking out of my skin even when I was in the dark, and for that there was no cure.

🙀🙀🙀👹🙀🙀🙀

Now, one should not read too much into dreams, I mean, I have no idea what the one meant the other day where I was on the 7s chatting my work shit, feeling happy. In the case of this particularly dream, I will hazard a guess and say that the unwanted regrowth on my chin, lip and general lower part of my face is making me feel self conscious, manly and ugly, and those do not a confident woman make. Well, that, or it could just be because I was looking at photographs of some fine trannys before I turned off my lights.

Damn you social networks. Damn you steroids. Damn you menopause. I think I really need to listen to some Shania Twain. If only I did not hate her music so…

EJB x

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