Tag Archives: fatigue

It’s Only Da ‘Roids

steroid
noun BIOCHEMISTRY 
Any large class of organic compounds with a characteristic molecular structure containing four rings of carbon atoms (three six-membered and one five). They include many hormones, alkaloids and vitamins.

Say what?
The above, I imagine after choosing a life of easy culture and civil service instead of biochemistry, is a fairly crude definition of a steroid. I do not know the molecular compounds of steroids. Why would I? Nor do I know the specifics of the steroid I have come to loathe called Dexamethasone. All I know is that the above description of a steroid fails, quite dramatically to encompass the sheer power of a drug I have been taking on and off for five years, and for that whole period of time, has been routinely been kicking me in the guts. 
Forget about the mood swings it creates, the changes to my body in the form of weight gain and facial hair have hardly made me a catch. I think the Myeloma already put paid to the romance, but the steroid beard certainly helped irradiate any of my sexual allure. You should have seen my steroid beard yesterday. It was particularly impressive yesterday because it lay in a bed of brace induced dry skin.
My quick Google search makes them sound so innocent. I know some steroids are innocent, but ever since I watched an episode of California Dreamin’ where Tiffany became addicted to steroids to enhance her volleyball performance, I have known there are something to be wary of. And wary I have been. 
Of Dexamethasone, the Internet describes it as a medicine and ‘a synthetic drug of corticosteroids type, used especially as an anti-inflammatory agent’. I’m not going to begin to understand what that means, but I will say that previous experience has proven that it is a remarkably good ‘anti-inflammatory agent’. 

Whilst we are on the subject of uses, I do not know, as this blog should clearly indicate, why I take this drug so routinely. Every Myeloma treatment is supported by steroids. Every treatment. I think I understand why I am talking it now, but why Dexamethasone supports pretty much all the myeloma treatment I have ever been on, the reason is anybody’s time to research. In light of my ignorance, I thought the least I could do was to investigate the list of known side effects. If you had asked me what these were two months ago, I would have answered without hesitation. Now? Since I started my new regimen however, the steroids have me feeling all out of kilter.
For the last three-four weeks, it would be fair to say that I do not recognise myself whilst on Dexamethasone. It should currently be called the ‘I’m Sorry’ drug, because I constantly seem to be apologising as a result of my behaviour whilst on them.
According to Wikipedia the side effects of Dexamethasome can include acne, insnomnia, vertigo, increased appetite, weight gain, impaired skin healing, depression, euphoria, hypertension, increased risk of infection, raised intraocular pressure, vomiting, dsyspepsia, confusion, amnesia, irritability, nausea, malaise, headaches and cataract. So, nothing big then?
In five years, I can say without hesitation that steroids are hard on the body. I have personally experienced at least nine of the listed side effects. They have always been hard on my body. Wikipedia’s list failed to list my once biggest problem with the stuff and that’s the fatigue. The inevitable crash after the fall. And it was always inevitable until I started my current treatment. Gone are the three days of sleep after taking a dose. I suppose I should be thankful for that at least. Unfortunately, they still leave my mouth tasting like gone off milk stored for 100 years in a rusty tin can. For me, this means I can’t drink water because it just extends the taste of rotten milk tin.
Why on earth are you telling us all of this, Emma?
Since I started taking it again, my relationship with Dex has changed, and the difference this has made in me is significant. It feels personality altering. 
I really did think I knew how to handle taking my steroids. If it made me stay up all night, I would stay up all night. Beards can be waxed or threaded. Crashes can be slept through with a bit of help from Julie Andrews.
Fast forward to now, and my reaction to the steroids feels extraordinarily different. Gone are the sleepless night. Gone is the excessive hunger. In, well, in is uncontrollable anger and tears. Lots and lots of them at the click of a finger.
Approximately 80mg of Dexamethasone a week, is making me into a quivering, worrying mess. I believe I was once stoic, but at the moment, I cry daily. I may cry when I am taken out of my brace because I irrationally worry that something will go wrong. I cry when I get out of the brace because it’s a restrictive torture device, and I do not wish to be restricted anymore. I cry on other occasions too; I cry because I fear the brace is not going to work and I’m terrified of having to wear it for longer than the six weeks I have remaining. I cry because the brace makes me feel lonely and I probably cry because I worry I am going to die. 
To be honest, given how alien my current circumstances are, I do not think I need a reason to cry. I just know that it is happening far too easily, far too often and the fault lies with the steroids. I can feel the anger and the pain boil up inside me, and nothing, and I mean nothing is going to stop me once it starts.
Uncontrollable tears isn’t my only new side effect, for the first time in five years, I can honestly say that I have now seen ‘roid rage. I am so quick to anger, there are times when I just want to scream and break things. There are times when I imagine myself breaking everything I own. There is no rhyme or reason to it, except, I expect, the steroids are bringing out all the anger I have about my current situation.
Just last week, I shocked myself with my behaviour twice whilst in the hospital. The first time I saw red was when I was stuck in bed desperate for the toilet, without my brace to mobilise. To paint the clearest picture, this scenario is my worst nightmare. You’d never catch me using a She-wee or peeing out doors; I’m just not that kind of girl. I have never been a public pee-er nor am I a good bed pan candidate due to the need sit on it with my crooked spin, big bum knowing that I have no privacy in a hospital bedroom. 
So there I was, in bed with a full bladder, in agony, asking some Medically Trained People for help. For anything that did not involve peeing in or near my bed. They clearly did not understand me, because they suggested a ‘pad’, which turned out to be a giant nappy. I can and did humiliate myself in several ways in hospital, but a nappy was pushing it too far. Way too far. 
My response to the nappy went something like this “I ask you for help and you bring me a fucking nappy? A nappy? I’m 33 years old, did you not consider how that would make me feel?” I was met with silence and blank faces, so through my tears, I went on. “If anybody would have been bothered to read my notes this morning you would have known that I should have been braced and allowed to go to the toilet at 7.30am, but it’s just typical of this ward that this did not happen. Get the fuck out of my room. Get the fuck out of my room and take the fucking nappies with you.”
And then I wet the bed. 
I apologised a lot that day. I am many things, but somebody who talks to Medically Trained People (or any people) like that, is not me. I was utterly ashamed of myself, but I could not stop myself either.
A few nights later, I had done some quality time in my brace. By ‘quality’, I mean at last 12 hours. By 21.30hrs, I had decided it was time to get into my bed and time for my breakthrough pain relief, so I pressed my bell. A nursing assistant attended, turned off my alarm and told me my nurse was busy. I waited 20 minutes, and I pressed the button again. The same thing happened again, but this time I explained the level of pain I was in. 30 minutes later, there was still not sign of my nurse and once again my alarm was turned off. By 22.45hrs, I was in so much pain and felt so completely helpless, I opened my bedroom door and slammed it. The satisfaction I gained from slamming the door was so great, I did it again. And then again. And yet still nobody came. After some more bell ringing and door slamming, at 23.30hrs, I finally came face to face with a nurse. Obviously, she was not my nurse and couldn’t help me, but she was a nurse who told me I could not possibly have been ringing my bell for two hours. I corrected her.
A few minutes later, I met my nurse for the night, who explained that she had been with a ‘poorly patient’. That was it for me, if it suited the situation, I would have gone back to slamming the door, but instead I told her that by telling me she had been with a poorly patient, she made me feel like I was insignificant and my illness was a mere annoyance in comparison. She then started talking to me in a very soft voice, to which I responded “where in my notes does it say I had a lobotomy or that I am stupid? Please do not talk to me that way”. 
So… I had to apologise again in the morning. My little outbursts become so frequent that I was regularly being visit by the Sisters to talk through my ‘issues’. Steroids were my issues.
I thought my episodes may have died down once discharged and in the comfort of my home. I was wrong. I’m still very quick to snap and I am convinced people are not listening to me or at least they don’t understand me, which is just as likely to get me to clench my fist.
A few nights ago, I was frustrated that I could not sleep and I suppose, being trapped in a bed did not help the situation either. So, like any other sane person on steroids, I used my grabber to pick all the DVDs (yes I still have DVDs) off a shelf above my bed and then once I had them, I threw them as hard as I could across my room whilst screaming and crying. I don’t know what had made me so angry (well I do, it was the steroids) in that moment, all I knew was I had to throw and scream as much as I could because that was the only thing that was going to make me feel any better. I suppose it’s better than resorting to physical violence, not that I am a particularly worthy opponent at the moment. In the end, I woke up Mamma Jones and she had to come and calm me down. 
I have listed some pretty shameful behaviour, behaviour that far outweighs the late night steroid induced internet shopping of old. In my current state, there does not have to be a catalyst to one of my fits. Yesterday, I just cried because I was scared. My point is, I am constantly trying to decipher what is a true emotion and what is a steroid emotion. My fear is that the two are interlinked and for the moment, I can only show my frustrations through the steroids.
It makes me want to avoid people. I snapped at Housemate last week because I felt he was not listening to me. My ‘roid rage scares me. I need friends when I get out of this brace, otherwise I could have saved £500 off my prepaid funeral. To be clear, I need friends for more than just filling seats at my funeral. I just fear that my current state will drive people away, even if it’s caused by the steroids.
It feels relentless. 
I’m not jovial. I’m not even sure when the last time I laughed was, although the brace can be blamed for that. It restricts my mouth.
EJBx
P.S. I cannot think of steroids without thinking of the sign my friend made for me all the way back in 2012, that states ‘It’ Only Da ‘Roids’. She’s literate by the way, I think the use of ‘da’ was designed to make me smile. It’s a thought I hold close. Through tears, shouting, late night shopping and whatever else it throws at me; steroids are not my controller. 
Myeloma is. I’m just not entirely sure how that helps me right now…

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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. 
…………………………………………………………….

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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Trial By Error? 

It has been a mere 16 weeks since I started my trial, which now consists of fortnightly doses of Daratumamab, steroids and an antihistamine. 

I say ‘mere’ in an attempt to justify the fact that there have been no blogs for nearly that entire period. On the one hand, mere sums it up nicely. The weeks and the doses have flown by and I have nothing to show for it. Looking back on it now, I feel like hardly any time has passed at all. 

On the other hand, I am telling major porkies, for there have been several periods during the last 16 weeks where I would have described the trial as relentlessy slow,  frustrating and exhausting. Perhaps if I shared these feelings with you at the time, I would made things just that little bit easier for me. I could have had mini data dumps on you and off loaded. I was just too tired to put words to keypad.

There is another reason too, one which came into my head only yesterday. On this trial, I am always waiting for something. Waiting for a result, waiting for a clinic appointment, waiting to see how I feel, waiting for a development. Waiting for something that gives me some sort of conclusion to these short stories about my life that I have decided to share with you. The conclusions have not come.  Thus, this has made me feel like any recent story I had to tell about my treatment (or anything else for that matter) would be incomplete. It worried that it would be more of a whinge about how much of my life is about waiting for something to happen with my treatment. At times, it feels like I am waiting for everything. I do not wish to come across that way. I like to think I am realistically positive, but can that be interpreted through my writing when my brain feels less able than it was when I started it. 

I like a story with a beginning, middle and and end, featuring as little ambiguity as possible. Don’t get me wrong, I do not need to be spoon fed (drugs permitting) and I can withstand the test of endurance that is a modern day Terrence Malick film, or in fact any film that is described by a film critic as ‘meditative’ but personally, I prefer just a little bit more clarity. And my life of late has been left severely wanting in that area.
So, here I am. There is no end to this story. All I can say to you is that I am not dead. Not yet. To those of you who were concerned that I may have passed to the other side, I thank you for thinking of me and for worrying about my absence. I am back. It does seem like a lot is going on at the moment, so I will have many a half finished tale to tell you. Fingers crossed.

Yesterday, the 17 August, marked my five year cancer anniversary. It was a loaded day. There is so much to remember about this period, and Daratumamab accounts for just 5% of the five years. You would think that I would know by now that I rarely get an end to my stories. Only occasionally have I been able to announce an end; the end of a chapter, or an end of volume have been my particular favourites. In reality, I know I should just face the facts that my life from now is ongoing, until it stops. And thus, I have no excuse to not share what is going on with you. You are, after all my cancer diary. 

Getting back to The Daratumamab, the one thing I do know, is that it has not been easy nor straight forward. Has any of my treatments? 

I flew into this treatment after a week’s radiotherapy and two weeks after I had received some very bad news. I was shell shocked and exhausted. I started the treated not knowing what it was and without fully understanding what the aim of the treatment is. I still don’t know and this is because every time it is explained to me, my painkillers kick in and my brain floats off into NeverNever Land.  I just know that being on the trial far outweighs the alternative of not, and for now, that’s okay with me. 

If I have learnt anything important since I started on the Daratumamab, besides from how to pronounce it, it’s that being on the trial is better than not being on it. It may be lonely, my body may be being used as a corporate guinea pig, but I don’t care. I am happy I am on the trial. Scratch that, I am grateful to be on the trial and everthing it encompasses far outweighs the negatives of being on a trial. The negatives by the way, are several, but in the grand scheme of my life, I can live with them. 

It would be really nice if I were now to talk you through each of my treatments. To build up a narrative, and to get you to feel even a little bit of what I feel every time I enter St Bartholomew’s Hospital and the times I am not there, lying in my bed thinking about it. That’s an awful lot of visits to go through and my short term memory is highly questionable, so I am not going to do that. Maybe I will one day. Maybe I will today. Right now however, I’m going to jump straight into what I assume you want to know and that is, how am I doing? 

How am I doing? 

Medically, I had to wait a long time for that to be answered. Two weeks ago, I did have an answer, but as of yesterday, I am right back into the Land of Worry, led by the President of Anxiety with her Cabinet of the Unknown. 

I did not have a clinic appointment for the first two cycles, which for cyber attack reasons, was nine weeks. Before that, I faithfully went in for my treatment each week, without knowing if the trial was doing anything. I went through various emotions during this period and in the end, I had decided that I would prefer to not have clinic appointments and only be informed if something bad was happening. Unfortunately, I didn’t actually tell any Medically Trained People this, so when I was telephoned on a Friday afternoon to say that I had to see The Big Prof on the following Monday morning, great panic ensued. Why now, I thought? Why with the greatest of haste? 

In my panic, I ignored the fact that the appointment marked the end of my weekly doses and the beginning of a new cycle. I also ignored the fact that I had not seen The Big Prof since I had walked into his office eleven weeks earlier and he made a space for me on his trial. I irrationally thought the worst.

This was sometime around the beginning of June and I can confirm that it was not the end. My paraprotein had remained stable throughout the nine weeks of treatment; it had not fallen and it had not risen. As a layman, I would have liked to hear that my paraprotein had gone down, but The Big Prof said he was happy with my results and signed me up for another cycle. I was to return to see him at the end of the next cycle, four weeks later. Apparently, that’s how frequently I should have been seeing him; at the end of each cycle. 

Something happened between my first clinic appointment and the second appointment. Well, a few things. I went on holiday, which meant having a month’s break between treatment and more importantly, pain returned to my body. That’s wrong too, I am not sure why I am unable to say what I mean on the first attempt. Pain is a multiple, but mostly managed daily experience. I do not have a day without pain. The word I omitted was ‘new’. New pain returned to my body. I have only experienced ‘new pain’ in the past when my disease was increasing. So, in this circumstance, I did what any sensible person would do who was desperate to go on holiday. I kept it a secret. I kept it a secret for two whole weeks before I blurted it out to Mamma Jones before we went on our holiday. I do not think I could have held it in any longer without inflicting serious mental health issues upon myself. 

Three to four weeks later, it was clinic time once again and if I thought I had been nervous at the start of June, I do not know what words could be used to describe what I was feeling on 2 August. It was not pretty. I had roped Mamma Jones into this one. I knew I could not do it alone and not surprisingly, my dear Mamma used up a day’s annual leave to come and support her baby during her appointment. I’m not ashamed to admit when I need my Mamma and she is always willing to oblige. I don’t want to gloat, but she does it so well. She even managed to keep me calm during the two hour wait in the most uncomfortable of uncomfortable waiting areas with her small talk and usually, small talk is not her forte. 

I had somehow managed to avoid thinking about it on holiday, despite increasingly bad pains, which just so happened to coincide with too much physical exertion. My holiday is another blog, but for this story you just need to know that I pushed my body to it’s limits, and beyond what I have medically been told I can do, so I could enjoy myself.  Experience it properly. By the end of the holiday, I could no longer put on my own shoes and socks. It was all worth it of course. The new pain, however in my right rib cage, once the excitement of the holiday was over, started to cause more pain than just the physical pain. 

So, having self diagnosed myself, we walked into the Medically Trained Person’s office to be told that everything was okay. I was shocked. My paraprotein still remained stable and despite putting on a bit of weight, I was clinically well. Mamma Jones and I left, I apologised to her for having to lose a day’s annual leave over nothing and I breathed a massive sigh of relief. Or four.

It was not long however, maybe even in a matter of hours, that I realised that I was predestined to have these feelings of anxiety repeated in the lead up to all future clinic appointments. I personally feel like I am hanging on to this trial by a thread, with what happens to me, being completely out of my control. When the bad thoughts creep into my head, I do quickly try and grasp on to a more positive spin. I want to stay on to the trail. I want to stay on and experince more of what this mortal coil (the right term for the state of the world at the moment) has to offer. I would say that in the circumstances, I am as positive as I can be. I’m realistic with it too, so when I feel something new in my body or I experience something that is not quite right, I am bound to worry. I am concerned that there are times that I can be too negative. I have discussed my behaviour with my counsellor and she says that pre clinic anxiety is perfectly normal and that acknowledging my fears is much healthier than behaving like I do not have cancer and I am not where I am in the long line of myeloma treatment.  I’ll take her diagnosis. 

It does feel natural now to worry about my success on the trial, given there isn’t that much out there, drug wise available to me. I can understand why I never truly feel comfortable too. Between appointments, I try to block as much of this out as possible. In my free time, I make sure I do as much as my body enables and that definitely goes someway to refill my faithful old ‘good cylinder’. Since my treatment moved to fortnightly, I have fully embraced getting a week back of my life, and I use it productively to live and not wallow. I have also lost the guilt I felt whilst my treatment was weekly, that I was not living enough. I was just too bloody tires 

In the last few weeks of the weekly doses, I really struggled. During the first few weeks, I had calculated that with treatment including steroids on a Thursday, steroids at home on a Friday and Saturday, followed by the inevitable crash on at least Saturday if not Sunday (and Monday), I was afforded two to three good days before I was back having my bloods done on a Wednesday morning. Then, everything started again on the Thursday. That two-three ‘good days’, days in which I was able to do something like a single trip to the cinema or a trip to the pub were invaluable but fleeting. A ‘good day’ did not equate to A full day. 

Gradually, as the weeks progressed, the number of ‘good days’ decreased and I longed for the fortnightly treatment. I had a week off treatment because my hospital was a victim of the NHS cyber attack, or whatever you wish to call it; I am no IT expert.  That week gave me a taste of what was achievable in a week off, and it felt like  freedom. Realistically, when you count the days I had appointments at UCLH too, I was down to one ‘good day’ by this point. As much as I enjoyed that week’s break, it made the remaining weeks feel like torture. Thank goodness for my Support Network.

I started receiving the Daratumamab fortnightly on the 14 June. To date, I have completed one and a half cycles, which equates to four doses. Technically, I do not require any more doses in this cycle but the next one, will not (hopefully) start for another 13 days. 

All of that nearly brings me up to date. Nearly. Yesterday was treatment day and it was five years and three days since I was admitted to another hospital with an elevated calcium level in my blood, leading to my diagnosis of multiple myeloma on 17 August 2012. Yesterday, I was told that I once again had an elevated calcium level. I am sure there are many medical reasons for this result, but to me, it answered my questions of why I have been experiencing the ‘new pain’, memories of five years ago fresh in my mind.  

The Medically Trained People I saw yesterday were ward based, which means they are not responsible for my overall treatment, if they know anything about my overall treatment at all. They approached the subject part calmly and part like a headless chickens.
The news of a high calcium level was met with my tears. The tears may not have come were it not for the anniversary, but I doubt it. I am so aware of failure that I probably would have blubbered like a baby regardless of the date or regardless of the cold way it was broken to me. “Are you on any supplements?” probably was not the best way to tell me, but that’s what happened so I just have to move on and acknowledge that the Medically Trained People working on St Bart’s daycare are extremely busy. 

As I wrote a few paragraphs ago, the result would answer why I had been experiencing the ‘new pain’ and generally why I have recently been feeling a little ‘off’. I asked  for my paraprotein result and I was told by the doctor that it had risen by a tiny amount. ‘Tiny’ was emphasised by a hand gesture and a closed eye. I asked for the actual figure and it had risen by six based on the bloods taken on 2 August. Is an increase of six tiny? I would have said it was, but then, I am not medically trained. 

So, where does this leave me now, does this story have an ending? In a word, or in four words, I do not know. Yesterday it meant receiving two large bags of fluids, which has left me peeing practically non-stop since. In terms of my long term health?  I do know is still my answer. I will have to wait for my next clinic appointment on 30 August. A clinic appointment where they will thankfully not be working on month old results. I know it will be a clinic appointment where my anxiety levels will once again go sky high. I will try and live next week, but I doubt the next clinic appointment will be far from my mind. 

Last week, I told various people in an attempt to justify my feelings about my treatment and life in general, that I lived month by month. I strongly, most adamantly believe this to be true. It’s like waiting for scraps, accept just with higher consequences…

So, this blog has now come to an end.  Is there an ending? I hope it is not the start of one. 

EJB x

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It’s Only Da ‘Roids

steroidnoun BIOCHEMISTRY 

Any large class of organic compounds with a characteristic molecular structure containing four rings of carbon atoms (three six-membered and one five). They include many hormones, alkaloids and vitamins.

Say what?

The above, I imagine after choosing a life of easy culture and civil service instead of biochemistry, is a fairly crude definition of a steroid. I do not know the molecular compounds of steroids. Why would I? Nor do I know the specifics of the steroid I have come to loathe called Dexamethasone. All I know is that above description of a steroid fails, quite dramatically to encompass the sheer power of a drug I have been taking for nearly five years and for that whole period of time has be routinely kicking me in the guts. My quick Google search makes it sound so innocent. I know some steroids are innocent, but ever since I watched an episode of California Dreamin’ where Tiffany became addicted to steroids to enhance her volleyball performance, I have known there are something to be wary of. And wart I have been. 

Of Dexamethasone, the Internet describes it as a medicine this time and as ‘a synthetic drug of corticosteroids type, used especially as an anti-inflammatory agent’. I’m not going to begin to understand what that means, all I would say, is that for the moral of our current story, remember it’s use as an ‘anti-inflammatory agent’. 

Whilst we are on the subject of uses, I do not know, as this blog should clearly indicate, why I take this drug so routinely. I think I understand why I am talking it now, but why Dexamethasone supports pretty much all the myeloma treatment I have ever been on, well, that reason is anybody’s time to research. In light of my ignorance, I thought the least I could do was to investigate the list of known side effects, for it is those where I feel I know the drug as well as I need to. 

According to Wikipedia the side effects of taking this dreamboat can include acne, insnomnia, vertigo, increased appetite, weight gain, impaired skin healing, depression, euphoria, hypertension, increased risk of infection, raised intraocular pressure, vomiting, dsyspepsia, confusion, amnesia, irritability, nausea, malaise, headaches and cataract. These are the common side effects.  If you are bored, research further but I think I have copied enough to get my point across. They do a lot and they are unpleasant. 

Steroids are hard on the body. They have always been hard on my body. In fact, such has been my response to steroids that for the last two treatments I have had, I have been allowed to take a lower than the recommended dose so that I could have something that resembles a normal human’s week at the end of it. I would rather take any other of my routine medications, even the one that gave me nightmares. 

Wikipedia’s list failed to list my biggest problem with the stuff and that’s the fatigue. The inevitable crash after the fall. And it was inevitable. I used to prefer taking my month’s steroids over four back to back days as opposed to weekly, just so I did not have to deal with them as much. I didn’t always succeed, but that was my goal. Get them out of the way as soon as humanly possible, whilst still adhering to the will of the Medically Trained People.

Why on earth are you telling us all of this, Emma? 

Patience. Something I lack in abundance, but bear with me. There is relevant, I assure you. 

Scooped up all the shock that happened 10 days ago now, I was prescribed what is medically known as a ‘pulse of steroids’; with the particular steroid being, yes you guessed it, Dexamethasone. At the time, I thought I had been on a similar pulse of steroids before,  but I soon discovered that the only thing I had to compare this pulse to from previous treatments was like walking up Parliament Hill and comparing it to Mount Snowdon.

The course started with taking 20 tablets (40mgs of Dex) for four days, reducing to 10 tablets (20mgs of Dex) on days 5 and 6. By Day 7 and 8 I was down to just five tablets ( 10mgs Dex) and for the final two days, I was prescribed a piddly two tablets per day. Just in case you were wondering, this was to be taken on top of my usual-keep-things-at-bay and not-so-usual-pile-of-pain-medication. So, I have been taking a lot of medication. The prescription for the first four days was for more steroids than I had taken in the last four complete monthly cycles of treatment. It was a LOT of steroids.

When I first heard of this mammoth dose, I thought that it was the sour cherry on top of a pretty ropey, dry cake. It didn’t take long, even in the mental state I was in that day, to be apprehensive about this course of treatment. Eyes were rolled.

How big is the inevitable crash going to be? When am I going to crash? How am I going to go to the toilet over the next week? Am I even going to be able to go to the toilet? What’s my mouth going to taste like? Will I be able to drink water? 

Sometimes, I should spend less time worry about the answers to unknown questions and just let Myeloma take me for a ride. I mean, that sounds all very nice and tranquil and a creator of less worry knots. To be clear however, I would never complain about worry knots. If worry knots exist and you were to mention your own worry knots to me, especially after 10 days on steroids, there might be problems. Or at least some solitarily mocking.

I am digressing. I am constantly digressing and that’s because I am here to tell you what it actually feels like to take 238mg of Dexamethasone.  It makes your brain feel like fuzz. My mental recall, unless it is about episodes of the West Wing, is… well… what was I saying? At this rate, I am going to wish I had different friends. They are too learned for me right now.

Digressing again… I was right to be apprehensive about it. Prior to starting, I had already discovered that the Dex offered some pain relief in the 24 hours after taking it, but this was the only benefit I saw and I did not know for certain that it was the Dex that had made it easier to get around on that particular day. My immediate thought was that I was not going to be able to move for at least 10 days. At a push, I thought I would get through the first few days and then I would be a bedbound mess for weeks after, unable to get out of bed for a drink. Thankfully, so far at least, that has not happened.

Instead, the steroids ploughed me into a period of emotional instability supported by mass uncontrollable, US reality TV level of food cravings. It’s probably best to break it down. Wikipedia needs to update it’s ‘common side effects’ information because nowhere on that list did I see fatigue, constipation, tin mouth, facial hair growing  at the speed of light and tears, lots and lots of tears.

My first few days can be easily categorised as ‘the crying days’. Without the Dex, I dare say that I had some very valid excuses to cry, but on the Dex it was uncontrollable. My usual stoicism forbids this sort of behaviour and I have managed to install a usual system where my crying is done in the privacy of my fortnightly counsellor’s sessions or alone at the darkness of night.

I returned to the safety of Mamma Jones’s nest after the latest of my Bad News Day, and it was there, where I am surround by my immediate family, where I found a lot of things to get emotional about. I could feel that a full outburst was never far away and it wasn’t far away. Somedays, I cried just because the pain was overwhelming me. Other days, and these are the ones that surprised me, I cried in gratitude and in sadness and all of it was completely out of my hands. 
Something as simple as Mamma Jones bringing me my dinner. She cooked it, carried it upstairs to my room and served it to me every day. Almost every delivery resulted in tears, whether she saw them or not. The steroids made my insides come out. 

The worst part of my behaviour was around my nieces. Aged 5 and 10 years old, I do not know if they have an idea why they  Auntie Emma constantly breaking into silent tears mid conversation over the course of a weekend. It’s not something I chose to do, it was completely out of my hands and that is a testament to the power of steroids.

For the first few days, as I acclimatised and things sunk in, I just had to look at them and I immediately began to miss them. My brain would fast forward to that point in time where I once again won’t be there and I’d worry they wouldn’t remember me. Thoughts like that could come in an instance. Would I always be their favourite auntie (if I am indeed their favourite auntie) if they cannot remember me at all?  I asked the eldest if she would miss me, I know I shouldn’t have done, but my steroids took away the filter. Her answer was a ‘maybe’. So, bathed in love and not feeling remotely vulnerable, I cried again. The eldest was supposed to spend two days with me in London, and even the guilt at having to let her down had me blubbing. 

At my most confusing, at least what I imagine was the most confusing for them anyway, was a very innocent conversation about breasts or in our case ‘boobies’, that may well be ranked in my non-existent list of worst conversations ever. At the age of 10, my eldest niece is going through the changes girls go through. Her little sister enjoys this and proceeding to tell us that ‘Lara has little boobs, Auntie Emma has BIG boobs and I have no boobies’. That was it. That’s all she said. Even recounting said story makes my ears water. I immediately started to cry, not loadly, it was more of a silent, please do not see this, sort of cry. It was so innocent, but it highlighted how much there is for me to lose and I have absolutely no control over it. I think they rallied together, but I am pretty sure they had a few days of thinking that Auntie Emma was a total wing bat.

I expected the mood altering side of steroids to manifest itself into rage. Sorry, I meant RAGE! It did not. Even when two women complained bitchily to me that I had put my luggage in the wrong place on a train carriage resulting in them dismantling my disabled friendly bag set up lovingly done by Big Sister, so they did not need to lift up their own suitcases,  even then, the rage was nowhere to be seen. Instead, I apologised, returned to me seat and cried. I should have told them why I couldn’t move my luggage, or why they had just seen my sister escort me onto the train, or why one of the bags was full of prescription medication and another contained two empty specimen bottles awaiting 24hrs worth of my urine, or why I was free to travel in the middle of a week day. I should have done all or any of these things, but I didn’t. The steroids just made me cry and I am wholeheartedly ashamed of myself. 

Maybe that will come, but if it is anywhere near as strong as the tears, stay away from me. Actually, don’t stay away from me, the steroids make me paranoid and I do not want to feel like that either. Anyway, I cannot do up my bra at the moment, so I doubt I’ll be getting into any physical fights any time some.

I suppose the tears the could be neatly boxed under Wikipedia’s ‘depression’ section. I do not think I have been able to portray the weight of the feelings I felt. Just do me a favour and trust me when I say it was ‘bad’. Thankfully, as my dose has lowered, there have been less tears. I have been feeling far more aligned with my usual self and that involves burying my true feelings until I am alone or with my counselling. A healthy approach if ever there was one. 

All other side effects, possibly with the acceception constantly thinking I have glandular fever and excess facial hair, are concentrated around bodily holes. That is how powerful steroids are. 

If there is one thing that a pulse of steroids did to me that I was expecting, was to increase my appetite. A bodily hole. I dare not total up how much I have eaten in the last ten days nor how many calories have been consumed on pretty much zero physical activity. It’s a lot. Like, a bloody lot.  As I soon discovered, the Dex did not have me searching for all foods, just the bad ones. I know asparagus is good for you and I like asparagus, but a tin of mushy peas made a far better plate fellow with a pie.  Like I really had to explain that? 

Dexamethasone when taken in isolation and mixed with my body loves nothing more than carbohydrates. If said carbohydrates happen to be served fried, with butter or with a sprinkling of cheese,served with a massive piece of chicken, comes in a packet disguised as a crisp,  or as a cake then that was Nirvana. Fulfilling each craving felt medicinal.

Thinking about food beats thinking about death, but I have never known my desire to eat to be so all consuming. I’ll be honest, and this does make me weak, no ifs or buts, I gave in to every single craving. I’m sure a nutritionist might have a view on this, or just an opinionated person who eats a lot of greens, but I do not want to hear it. I know that it was bad having a bowl of frozen mash potato as a snack one hour before dinner, but I needed the instance gratification despite the fact I had only just finished half a tub of hummus and had porridge for breakfast. The four slices of Soreen that followed that dinner were also completely necessary and, unavoidable. It was treatment.

I know that I have had steroid cravings before, but this last week has been a whole new realm. I arranged a supermarket delivery on Saturday and on top of including foods that would keep me semi-independent, I ordered Skips, Wootsits, Squares (salt and vinegar), toffee popcorn, mini popodoms, boxes of cereal and a packet of bagels.
 The shame!

On Friday, I sent my friend on a quest to my favourite bakery in London to buy slices of my two favourite cakes in our fair land. It was all to satisfy a craving that started 24 hours before. On Thursday, I found myself on Tottenham Court Road with 90 minutes to kill between appointments. In theory, the cakes could have been mine then, but in practice, they could not be. Do you know why? Because I could not walk the 0.8 miles round trip to get them. I had to settle for a Krispy Kreme instead and I do not really like a Krispy Kreme. Oh, just to maintain some level of continuity with this blog, do you know what happened when I realised I was unable of walking to Konditor and Cook for my slices of Lemon Chiffon cake and a Curly Whirly? I cried.

As with anything that goes in, it must come out. Wikipedia definitely neglected to tell us about this. The only thing I will say on this matter, is sodium docusate. Sodium docusate and lots of it. My long experience in large doses of steroids does not support any argument towards diarrhoea. Steroids mixed with the pain medication I am on, causes the opposite issue. I prepared for this eventuality and so far, so every four days. Yesterday, my experience can only be classed as sublime.

Being on so many steroids also had me searching my brain for the techniques of years gone by. Again, this relates to holes. Linseed is a lifesaver, just don’t accidentally let a puppy eat it. 

Finally, no story of mountains of steroids would be complete if I did not mention the effect it has on my mouth. I used to call it Tin Mouth. I still call it Tin Mouth. I think I have listed enough life altering side effects already, but do not underestimate the impact of having everything in your mouth, including your salvia tastes like mental. Thank goodness nobody but my dentist gets near my mouth. Every flavour is distorted. No amount of ice lollies will get rid of it. My tastebuds are tainted. The weather this weekend was lovely, but I could not quench my thirst with an ice cold glass of water because such a thing would taste of week old unbrushed teeth mixed with pond. Thankfully, though probably not for my kidneys, steroids make me less thirsty than usual, but unfortunately one still needs fluids to function. People like me need fluids to take their 20-40 pills per day. The trusty brew is strictly off the menu. The only thing that tastes remotely like something I would want in my mouth is lemon squash. That was another thing I had to think about and prepare for. Squash had to be purchased.

👅🐽😭👅🐽😭👅🐽😭

I think you get it now. A course of steroids is no walk in the park. I mean, I cannot walk around a park at the moment, but it’s hard. The Dex, even though it is there to help, above all the other medications I take it seems, mostly to hinder. Nothing seems safe from it.  I would even go as far as saying I hate them.  I hate that I have to make sure I take it by 11am, even if I am too tired to make sure my stomach is full, so I can get a good night’s sleep. I hate that even though I have taken it early everyday, there have still been nights where the power of the Dex have overpowered the strength of my sedatives.

Most of all, I hate the unknown. I finish said course of steroids today and I have no idea if I am about to have one of those, all too familiar steroid crashes.  I have been preparing myself for this for 10 days, and it looks like it may not come.  Do I let my guard down?  It’s not worth the punt.

I will never live a life completely free of steroids. I may get to be free of them for the next week, but they’ll be back. They’ll always come back.  Dexamethosone goes with Myeloma like salt in porridge. They should always be served together. It’s an acquired taste. 

In conclusion, despite everything I have written, I am a liar. Despite previously willing this pulse to end as quickly as possible and for the steroids to depart my body,  I do not want to stop taking them in the short term. In fact, first thing this morning I called the  Medically Trained People ready to beg  them to allow me to  take more.  

I do not want to prolong the mouth, waist and emotional altering torment just to give me something to talk about. I just want my pain to improve. And at the beginning of last week, for 12 hour periods at a time, my pain improved. The Dex really did act as an ‘anti-inflammatory agent’. Last week, when I was taking 20 or 40mg a day of steroids, I may have been eating non-stop and crying at the sight of the dog, but I could walk normally. I did not walk like Quasimodo. The ‘pulse’ of steroids, designed to control my pain, actually did control my pain. I’ve weighed it up in my head. I will get more from the steroids right now, crash or no crash, than I would by not taking them. The radiotherapy is going to work, it’s just not going to work right away and I need some independence. I need to be able to clean the mushy peas I dropped on the kitchen floor on Saturday.

I never thought I would say it, but I don’t think I can do it without them. 

EJBx

P.S. I cannot think of steroids without thinking of the sign my friend made for me all the way back in 2012, that states ‘It’ Only Da ‘Roids’. She’s literate by the way, I think the use of ‘da’ was designed to make me smile.  It’s a thought I hold close. Through tears, shout, late night shopping and whatever else it throws at me; steroids are not my controller. 

Myeloma is.

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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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18 is a Magic Number

Just over four weeks ago, on a Wednesday evening, I sat on my sofa brimming with excitement. I really do mean brimming. My cup was running well and truly over. There was so much excitement in my belly that I felt almost giddy. In me, giddiness general manifests in mumbling to myself and occasionally rubbing my hands together like I have just hatched a masterful plan. The cause of my excitement was not because it was the evening of the Great British Bake Off final and Housemate and I had settled in for a night with a takeaway, although that sort of thing does stir my loins these days. No, my excitement was due to the fact it was the eve of my annual film marathon. It was the eve of the London Film Festival. I wrote a very similar blog last year, and the year before that, so you could just re-read those instead of reading on. 

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Still here? Grand. 

This year, unlike two years ago when I was also post transplant, there was no question in my head of me not partaking in what is a film lover’s paradise. I may have had two transplants this year, but going into that treatment, I simply told myself that by October, I would have to be ready to see one, maybe two films a day for eleven consecutive days. I did have to give consideration to my stamina, so I had long concluded that if, at the time of booking, I thought I might struggle, I would give myself a day or two off during the eleven days. But, essentially, by hook or by crook, I knew that I had to get my bum down to Leicester Square, at least ten times. My mental health depended on it.

To those with able bodies, this might not seem like that much of a challenge. Mamma Jones tells me that it is, but she’s my Mum and she has to say things like that to buoy my ego. It is now 17 days after the festival finished, and I can confirm that it was definitely a challenge for both my body and my mind. Put it this way, I no longer think I am just in recovery from an allogrnic transplant.

Prior to the booking lines opening in mid September, I set myself a realistic limit of 12 films. In reaching this calculation, I factored in how much activity I had been doing, how many films I saw the previous year (20), financial considerations and the overall weaknesses of my body that I endure daily. When the booking lines opened, I disregarded all of that and  booked myself in for 18 screenings to start on 9 October and finish on the 19 October. My response to this momentary lapse in control was ‘whoops’. The Bank of Mum was the official sponsor of my film festival, providing financial support as well as daily cheerleading throughout the process.   Inevitably, as I sat on the sofa waiting for the GBBO to start, I booked in another screening, bringing my grand total up to 19 screenings, because my giddiness had made me feel ever so slightly invincible.

To many people, including myself, there is a little bit of the ridiculous about how I approach the film festival. I got carried away. I really, did. The London Film Festival no longer simply represents an annual period of cultural indulgence. It’s become how I prove to myself that my will still has some say in how I conduct myself and spend my time. That is an important thing to remember every day, but LFF is a handy reminder that even if my grip is weak, I must still cling on to the things that make me, Me. I am not just a Myeloma and chemotherapy riddled vessel, despite the occasional propensity for me to think this.  

To me, and I think it is evident to my nearest and dearest, it is imperative that this part of my life does not stop. My brain couldn’t take another loss. What I get from throwing myself into multiple dark rooms, not talking to strangers over x amount of day lasts way beyond the days I am doing it. I’d had two years of testing the theory.

No pressure then.

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In the months prior to the EJ Bones Film Festival launch date of 9 October, I had managed to get on a bus four maybe five times since Transplant Number 2 and not once had the trip been longer than 20 minutes.  I had probably been out of the flat or Mamma Jones’ house for at most, five hours at a time, and the majority of that was probably hospital related. If I did for some inexplicable reason find that I had exerted myself for more than say four hours, I would then need to spend the entire next day relaxing. I also required a good 10-12 hours sleep a day in order to function.

  
19 screenings over 11 days did not give me much leeway for any ‘Bad Days’ and I get by on being able to have a Bad Day. Although I did get carried away with my bookings, I had created a schedule that would use the least amount of energy. If I was seeing more than one film a day, they had to be back to back, so that I did not have to do the 100 minutes round trip into the West End more than once a day. Bar two nights, I ensured I was home by 20:00hrs so I did not not interrupt my drug and sleep routines. I had only booked myself aisle seats to allow my butt more space to wriggle. Any socialising outside of the festival was strictly prohibited. In essence, I had accounted for my every minute during the festival in advance of it. I even planned my meals. It made me extremely anti social. Beyond that, I had blanked out the week after it to recoup, which only added to my misanthropic behaviour. Those 11 days in the middle of October, were my days and I put my hands up and admit that I approached it all with only myself in mind, knowing that it would make me feel better. In fact, to me, it was medicinal. A theory backed up by more than one Medically  Trained  Person. 

To put my energy usage into some sort of perspective, a few days before I found myself struggling to contain my excitement on my sofa, I asked a Medically Trained Person if I should still be limiting myself to the 5-25 minutes of activity a day. I was told that if I could do more, I should do more (but not too much), but at that stage they do not expect people to be able to do  much more than 25 minutes.

I think I have hammered home the point that my plans were ambitious.  

Did I do it?

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Of course I did. 

  
I missed the last screening. So, my film festival finished on the 18th with 18 screening and. I do not consider this a failure. Firstly, I got a refund on the ticket I did not use (ever the bonus). Secondly, I had seen 18 screenings in 10 days and by the evening of of the penultimate day, I was nearly catatonic. Sometimes, pride should be taken in knowing when enough is enough. Given the fact that I could no longer follow a five minute conversation, I knew that a two hour long Chinese musical starting 15 minutes after my usual bedtime was out of the question. If I had gone, I would have only done so, so I could tell you that I had seen 19 screenings and not the 18. 18 was enough. 18 was the magic number that is going to carry me through the next however many, long and dark months of the Unknown.

It was so hard. I thoroughly enjoyed myself, but my will and my body well and truly battled it out. Housemate lived with a zombie for the duration. Some mornings I had to contend with vomit or a similar issue from another orifice. The experience not only highlighted the level of my fatigue othe limitations of my morning drug regime; it reminded me that I have ‘problems’ with my back. Believe it or not, I forget about my back. I suppose 100mg of slow release morphine a day can do that. The same can also be said for spending nearly three months predominantly on my back.  The bus journey and sitting in a cinema seat quickly brought me back to a face squinting reality. 

In getting the bus and being around the general public, I was also reminded that the outside world is a hard place to exist in. It’s not considered acceptable to lie down when you are out, for a start, there are no beds. One of the cinemas had a footstool and I thought I had walked into paradise. Body issues aside, I suddenly and frequently had to factor in that there are the people who are oblivious when it comes to my disability. Mind you, my disability is invisible, so I can only allow myself to be marginally bitter about this. Leicester Square at midnight on a Friday could only be described as a Danger Zone for somebody used to the quiet of their flat. Many days I struggled to get a seat on the bus. There were many days I struggled to walk to the bus. Then there was the one day, when I was sitting in my seat ready to see the latest Studio Ghibli, when a woman on her way to her seat told me that standing up to let her through would give me some much needed exercise. Needless to say, I took her life apart with a disapproving glare. I just told this story to my favourite Medically Trained People, and they responded ‘if only she knew’. Indeed.

In the days that has turned into weeks following the conclusion of the festival, I have been extremely tired and my brain has been in quite a muddle. I started this blog on the 10th October. I feel like all my energy has been frustratingly zapped from my body, but I know that this is just an illusion of my own making. Of course I am tired and I do think some of this is caused by me running before I could walk.  25 minutes, remember the advisory 25 minutes. I went from doing a little every other day to being out and engaged for at least five hours a day for just under a fortnight.  On one of those magical days, I was out for over 12 hours. For those 12 hours, I pretended I was normal. 

During a few moments of existential despair, I have  questioned if I took on too much, whether 18 was too much and whether instead of  giving me hope, it has set me, physically at least, back. A physical setback quickly becomes a mental one too. With the help of my occasional  friend Reason, I realised that I was being missing one crucial detail… I am now doing more, and the consequence of doing more, is feeling tired and being more aware of the very real need for my bed. 

The EJ Bones’ Film Festival could never set me back. It’s spurred me on. The giddiness I felt on my sofa was not met with an anticlimax.

I would not be capable of replicating those 11 days again today. I probably would not be able to replicate it again in a fortnight. The key point for me to remember is that I did it once. And, if I could do it once, less than 100 days after my allograft, what the hell am I going to be able to achieve in 18, 50 or 100 days from now? More importantly, how many am I going to be able to see next October? The answer isn’t endless, but I know it is bigger and that is something to cling on to.
I am glad I set myself such a busy challenge, which means I am even happier that I was able to do what I needed to do. My will won out. I won that battle. Now, I just need to find a new one.

EJB x

🎬🎬🎬

For those of you who are interested, I saw the following:

1/ Grandma (USA)

2/ The Club (Chile)

3/ The Daughter (Austrailia) 

4/ The Measure of a Man (France)

5/ When Marnie Was There (Japan)

6/ Son of Saul (Hungary)

7/ Room (Canada/Ireland)

8/ 11 Minutes (Poland)

9/ The Assassin (Taiwan/China)

10/ Evolution (France)

11/ Chronic (USA)

12/ Carol (USA)

13/ Desirito (Mexico/USA)

14/ Cowboys (France)

15/ Dheephan (France)

16/ Anormalisa (USA)

17 & 18/ A selection of short films

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The Montage

If my life were a movie, this blog would be a five minutes montage sequence, deftly edited, to show the audience what I have been up to in the six weeks since my discharge from UCLH’s care.  It would need a soundtrack, all good montages do, take Rocky for instance. My soundtrack could be ‘Things Can Only Get Better’, but then, that would be an anthem that would need to last considerably longer than an edited version of my the last six weeks. For, we all know that things for me, are going to get worse before they have a hope of getting better. No song would really fit this period post Transplant Number 1, so just imagine the whistling theme from Disney’s Robin Hood, for no other reason than the fact it is a jolly ditty and a montage should really be inspirational rather an insipid display of melancholy.

The only barometer I have for how I should be feeling 56 days after a stem cell transplant is how I felt at this point after my last transplant. Of course, I had less Melphan this time round and for better or for worse, when I feel frustrated and fatigued, remembering a previous point when I felt worse, does not make me feel any better. My brain is firmly locked into the now, and knowing I have felt weaker is negligible when held against my current daily battle to get and stay out of bed.

In my head, the montage will begin with that wonderful  taxi ride back to my flat, there might even be a close up of my face showing the relief I felt at being able to go home. This opening shot would then be followed by several different scenes of me in various positions of rest on my bed at Mamma Jones’, her sofa, my bed in London Town and my own sofa. Montages tend to not have subtitles, but somehow, it would portray that as the weeks have progressed, I require less sleep and marginally less rest. The key word there, is marginally. Three weeks ago, I was introduced to my old foe, insomnia, so you would also need to see the nights I lie awake watching episodes of Inspector Morse worrying about my future. Fictional murder is really proving to be a great companion.

The first dialogue would probably be the conversation I had one week after my discharge with a Medically Trained Person, who told me that I would fight with fatigue everyday and then one day, approximately three months down the line, I will realise that I have more energy and I would suddenly find that I feel ‘normal’ again. Then, cut to a shot of my face looking like somebody just told me that a cat was a donkey, because I knew and know full well that that is not what is going to happen to me in three (now two) months time.  I’ll be swapping one trough for another, and that sort of medical autopilot made me want to punch a wall and it has done every time I have thought about it since. I think my acting skills are good enough to capture my ever present anger at getting better to allow myself to get worse…

Very neatly, this brings me to my enforced mantra or should I say, mantras. I’m getting better to get worse to get better. When that one fails, it’s all a means to an end. Then, when things get really bad, I just tell myself a very firm IT WILL GET BETTER, eventually. Or most commonly, my nearest and dearest have to tell me that. Most of the time I am just trying hard to trick myself into thinking that I am not bored of My Myeloma and my inability to do more than five hours of activity a day on a good day. 

In the immediate days of freedom, I spent ten days at Mamma Jones’ sleeping 12-16 hours a day. My sleep was intermixed with trips out for (small) lunches, Tescos, a Hobbit marathon with Haemo Dad and being waited on hand and foot. I am positive enough to acknowledge that I improved far quicker than I anticipated, and thus I was given permission by Mummy Dearest to return to London, where I have been attempting to look after myself ever since. Technically, I had a four day trial run, followed by a five day return to Mum love, due to what I would describe as ‘a bad few days’.

My bad few days included a few tears, a declaration that I had had enough of ‘all of this’, nausea and flu like symptoms. It was a feeling of doubt that passed temporarily, until the next thing happened to rile me up and then it passed again until the next thing happened to rile me up. And so it goes on.

Since my return to London, I have imposed a strict one plan a day rule. On the days I have been weak and desired to see members of My Support Network and planned more than one outside activity, I have been forced to cancel the second, because my body comes to a fast and bumpy stop. By outside activity, I include the odd trip to Sainsbury’s, three hospital visits, one barbeque, a few lunches and several trips to the Hackney Picturehouse. That would work very well into the montage. I really cannot get enough of the Hackney Picturehouse. My inside activity includes daily logic puzzles in an attempt to get my brain working faster than a baby turtle walks, cooking and half watching a lot of the telebox. The montage should, whilst I have the ability to remember, feature a few conversations I had where I was forced to stop mid sentence because I failed to remember the word I was trying to say. It’s not just losing a train of thought, it’s forgetting the actual words. I will always then apologise to the poor unfortunate soul speaking to me and curse the day my blood decided to crap all over my life. 

As the whistling theme fades, the next conversation you’ll hear, would be my trip to St Bart’s Hospital on 11 May. Following a very long wait, I was prepared once more for the uncertainty of the post allograft side effects and told that Transplant Number 2 is most likely to take place during the third week of July. I then got very sleepy. 

Back to various scenes of sitting, resting and attempting to distract myself from the negative impact of having multiple myeloma. 

Before I forget, there should also be the occasional clip of me struggling to eat and drink, then burping. Once I was able to eat, with less oral flatulence, I still for what seemed like several weeks, struggled to drink anything more than a sip without wanting to vomit it back up again or having to lie down to avoid vomiting it back up. It was at this point when I realised the power of hot water and lemon. Cut to my new glass cup and saucer with a few slices of lemon. Thankfully, things have progressed somewhat, so you’ll also have to see a few clips of me being gluttonous. A gluttony that can only exist with a daily does of strong anti sickness followed by a milder dose during the course of the day. Feeding myself comes at a cost, and in the last few weeks I have suffered from excessive hiccups post gulp, chew and swallow. You can imagine what an attractive dinner guest I have become.

Last Thursday, I had my first clinic appointment at UCLH since my transplant. After an unpresidented 150 minutes wait, I met with a Medically Trained Person to tell him how I was feeling, which after such a long wait, was braindead. Intentionally or unintentionally, managed to make  me feel very bad about my fatigue and and other side effects because, in his words, I had a lower dose transplant. In a montage I am not sure how I would get across my confusion as to whether he was saying that I was not trying hard enough to recover, that my symptoms were not real or that I was just plain lazy. How should I feel after a stem cell transplant that was preceded by nine months of chemotherapy treatment? Better, apparently. As for my need for anti sickness, I was told that I should no longer require Ondasetron. Fortunately for my sanity, I had attempted not to take said medication  the previous weekend and consequently spent most of the day looking rather green. 

Can a traditional montage have voiceover? Would that work to depict the insecurity I just described? No? Well, the next scene should do the trick and that would be Mamma Jones saying something along the lines of this specific Medically Trained Person not knowing me, accompanied by  something derogatory about his bedside manner.

And that is the end of it, at least for now. I have a sneaky suspicion that this fatigue riddled, nausea filled, cinephilia, meloncholic and courageous montage is going to go on for a little bit longer. And on. And on.

I might not be Rocky Balboa punching meat or Vivian Ward hitting Rodeo Drive, but it is my life and at least you are up to date.

EJB x 

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Veet

As part of a harebrained scheme to enjoy my final ‘healthy’ weeks before the transplant plans, I opted to take my steroid dose in one go, on Monday 23 February and ending four days later. That was four whole days of a lot of dexamethasone. Something I have done many a times before, but I soon discovered that it was different from the befores. My tried and tested theory was for me to get the big crash out of the way, so I did not need to worry about the pesky little mini crashes that I have become accomstomed to since Velcade was reintroduced to my life in December, which in turn would allow me to enjoy myself. I knew it would take me down, and I had planned to just let it, and silently will it to disappear as quickly as possibly. Vite, vite. 

Despite it being a tried and tested formula, I failed to fully realise what four days of steroids would do to me after eight months of non-stop chemotherapy. The result? Persistent ugliness. And I mean ugly. I mean five days of my bed, sweating, lots of carbohydrates, bad breath and swollen glands. Last Tuesday was the sixth day, of the crash and I congratulated myself for getting dressed with my trusty Rubywoo on my lips, but I after a two hour trip to the hospital for a dose of Cilit Bang, my energy was spent and it was back to my sofa for some blanket time. We’re it not for the hospital and the fact that I did not want the cleaner to think I was a slothenly sloth, I would have happily gone for a sixth day of flat bound cosiness. 

All reason told me that the crash was going to end, but it took me down to such an extent that I could not see how it was possibly going to end. When I started to write this blog a week ago, I wrote that “with the benefit of hindsight, I probably would not have decided to take this vile poison the way I did, because the take down was beyond something I imagined and could take.”

One week later, with the benefit of hindsight, I can say that despite it not being quick, I did absolutely the right thing. I find it interesting that last week, I documented my frustration. Now, I do not recall feeling that fed up with it all. I can almost look upon it fondly, like something made to deliver self indulgent anecdotes to friends. 

Housemate, do you remember the time I did not leave the flat for four days and did nothing but lie on the sofa watching mediocre films and eating crisps? My, that was a hoot wasn’t it?”

See? It’s a story with legs.

The four days I stayed in my flat, I was somewhat impressed with myself that I managed to shower everyday. I did not get dressed in the sense that I was wearing clothes I would be happy for people to see me in public, but I did put on the trusty trousers with an elasticated waist and my, did that feel good. When I was not looking at my television or the inside of my eyelids, my view was this (well, in colour):



I can say with complete certainty that one creature appreciated my crash.

One of downsides of not having the energy to leave the house, is grooming. Or the lack there of. As a long time steroid abuser, I suffer from an unfortunate side effect in which my face becomes inexplicably prickly. Prickles that become more noticeable when applying makeup is forgone because doing so would require an hour nap afterwards. By the Sunday, my third full day in bed, the black prickles became too, too much for my slow brain to take and Housemate was selfless in his kindness. He walked for three whole minutes to Boots and came home with a packet of Veet Facial Wax Strips, which he treated me to, so I could de-fuzz my face. Do you know what that gave me beyond the obvious removal? Another anecdote.

Mamma Jones, Housemate went to Boots today so I could remove my beard.”

See? 

As for now, six days after the crash ended, I have some energy. I’ve been able to socialise and process some thoughts beyond those of self pity and thoughts of no escape. For now at least. I am well aware that my six day crash is just a precursor for what is to come. If I wanted that to go away quickly, I cannot imagine what I am going to feel like post transplants. My despair last Tuesday scares me, because I have more than six bad days ahead of me. On the otherhand, my feelings post crash is a buoy. I mean, just think of the possible anecdotes…. And Bruce snuggles.

EJB x

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Crashed

I may have said in my previous blog that I was going to write two blogs about my brain function, but I have since decided that that would be a disservice. We all need another sorry tale about how hard my life is, before I can show you that I am the bravest person I know, who was born in the 24 May 1984. The logic behind my decision is sound, if I do say so myself. Part I took on one aspect of my fatigue. To truly understand it and for me to document how I am currently spending my days, no story about my life would be fully complete if I did not mention the overriding power of my day-to-day exhaustion.

Exhaustion, which is a daily occurrence. Exhaustion, which is both predictable and unpredictable in how it manages to drag me down to my sofa or my bed. Exhaustion, which on a good day, gives me approximately four hours of energy on a good day. Exhaustion, which if I happen to go over my daily allowance of energy, finds a way to quickly come and bite me on my wobbly bum.

I have said it before, but it is worth reiterating it, fatigue is not the same as requiring sleep. When it comes to this fatigue, I will take exhaustion without sleep, over decreased brain function any day. I’d rather not experience either, but I am trying desperately hard not to feel sorry for myself, and thus acceptance of these facts as I describe them to you, is crucial.

My current treatment consists of Revlimid tablets everyday for three weeks with one week off, accompanied by weekly doses of Dexamethasone and Velcade. To save you reaching for the Google, Dex equals steroids and Velcade equals bleach. It was the reintroduction of Velcade to my body in December, that sent my brain into it’s current downward spiral.

I cannot dress it up and I cannot lie. I am constantly tired. Is this enough clarity for you or do I need to go on for another 11 paragraphs describing what fatigue is like to hammer my point home? I think we know the answer to that one.

I’m really into examples at the moment and last weekend, I can provide you with a rather mundane one. I fell asleep at Mamma Jones’ dining table after I had conducted the most exciting of activities, which included a shower, decanting two tins of baked beans into a saucepan and eating my lunch. I had been out of my bed for a total of three hours. Three whole hours.

Spectators of my life, may believe that giving in to my fatigue on almost a daily basis may exasperate said fatigue. I have heard it many a time. Somebody will kindly advise me to go out, believing that it will make me feel less tired. It is a tactic that I have tried and tested, time and time again, each time willing for a different result. I can conclude, by shouting it from the rooftops, that my fatigue does not work that way. If I am tired, I am tired and nothing is going to change the feeling of complete and utter lethargy.

I am fortunate that there continues to be somebody in my life to tell me that it is okay for me to be tired. I especially need this provision in London. On occasion, he still needs to tell me that I cannot go out when my will is in deep battle over my body. A few weeks ago, I had planned a lovely Saturday of brunch and the cinema followed by an evening out. Having completed the first two activities, totalling five hours of activity, I knew the minute I walked through my front door that I would not be leaving my flat again that day. In fact, I did not leave my flat until two days after that. Missing an opportunity to socialise never gets any easier, let me assure you, and my frustration in the days that followed that Sunday was palpable.

On a much smaller scale, there are moments in my day when I feel so exhausted that picking up a glass of water is a chore. On my bad days, I might not even pick up that glass of water. The are a whole host of other daily activities where my execution of them is hindered by the feeling of nothingness, that I rarely seem to be able to escape from.

I know that this side effect makes me unpredictable and to many people, it makes me unreliable. Most of all, just with my decreasing brain function, it makes me boring. Many a night I wake up worrying that my flakiness, is perceived as just that, cancellation on a whim. Laziness. Selfishness. Indifference.

Haemo Dad was conservatively labelled a ‘fool’ last weekend because he told me that sometimes, I need to be seen to be making an effort with people. He is not the only person to say something like that to me, it is simply the most recent example. It’s a comment that makes me see red, and I’d probably still see red on this subject even if I were not on steroids.

My chemo brain does not stop me from fondly remembering the days when I could have multiple plans. It does not stop me from yearning for the days when I could socialise two days in a row. The thought that people in my Support Network think that they do not see me, or I do not attend events simply because I am not trying hard enough plagues me. Hence my red rage at the weekend. I think, and I know I am somewhat biased in my opinion, that I do try incredibly hard.

Given my current treatment schedule, I have not had That Friday Feeling for a long time. Thursdays through to Sundays tend to be my worst days, and they tend to roll into one big lump of time rather than four distinguishable days and nights. On the occasions when I make weekend plans, because, you know, I am 30 years old and need to live, it’s a military operation. I am going away this weekend, hopefully to enjoy myself and in order to facilitate this, I have ensured that I have no plans on Monday and Tuesday. I also forced myself to sleep for 24 hours since Wednesday morning. I have no idea if my planning will actually be of any benefit. Worrying about it, is also tiring. Can you see a theme here?

A friend of mine said to me that I always seemed to be busy and this makes it very difficult to plan anything with me. It was a conversation that made me cry like a baby when I was alone and had the time to think about it…. I suppose, to some extent, I am busy. My fatigue makes it very difficult for me to be flexible. In order to go out a few days a week, and by out I mean a meal, a trip to the cinema or my hospital treatment, I am forced to rest on all the other days of the week. Few will see and understand how difficult this can be.

It’s difficult on so many counts. It is difficult for me to go out and it is difficult for me to stay in. I strongly suspect it is a balance I will never get right. I pull myself in so many directions on the subject, but so too do the people in my life. I hasten to add that they do it for the best of intentions. On Wednesday for example, a Senior Medically Trained Person gave me a slight telling off for doing too much, and by doing too much, I am apparently making my fatigue worse. It is not my interpretation of my life but what do I know? I studied modern history, not medicine.

I could go on and on about this until the end of time, but that’d just be a waste of my energy. And so, I will end this. I need to rest my head.

EJB x

P.S. I promise that Part III will be like a double expresso with a pound of sugar, as opposed to this, which I would compare to a two day hangover. Everyday.

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Mashed

Hello there and welcome to Part I of, let’s say, two blogs about my brain function. I assume it’ll be in two parts; I have not written them yet.

The first post will be something of a downer as I describe what it is like to exist with constant Chemo Brain. As a romcom sort of girl however, I intend to pick things back up in Part II with an inspirational story of how I manage to fine some respite from my brain’s drug induced default position of blurry shapes.

So, back to the downer that is Part I…

I need to be clear about something that is commonly misunderstood. Fatigue as I know it now, is not just limited to tiredness. Of course tiredness is a big part of it, but there is so much more to it. So much more that is hidden from your view.

Essentially, my brain is straining and I know it is straining. In the last two months, as my fatigue has increased, so too has my inability to concentrate, think, remember and reason. Don’t get me wrong, I am not sitting at home all day long unable to tie my shoe laces. That’s a bad example, for I actually cannot do up my show laces, but that is not because I do not know how, it’s because my back forbids it. My recent days and weeks mostly blur into one big lump, where time passes quickly, with a noticeable lack of cognitive brain function and imagination. My time passes quickly and yet I do not know how, nor can I recall any use of something I once knew as ‘imagination’. I miss it.

This blog is a good example of my inability to think. When this all started, as much as I noticed that the drugs were frying my brain, I could still form sentences that did not always include ‘of course’, ‘so’ and ‘obviously’. Writing was easy. It’s not easy for me now. I like to think that I am rather witty, but realistically, after a glance through my most recent posts, my wit may well be in my past.

Believing something is better than nothing, I will continue to stick to the same old vocabulary to keep people abreast of My Myeloma developments, even though I know the content is becoming dryer than my skin post radiotherapy. I sit down to write a blog and more often than not, a blankness takes over and what I want to say cannot be said because the words just bounces around my head. If I can overcome that particular hurdle, I then find that the act of writing things down, something that remains important to my overall wellbeing, uses up my daily thought allowance. I blame this for my current, simmering level of madness. That is my story and I am sticking to it.

Waking up one day and realising that your ability to communicate is not what it once was, is not something to relish nor welcome.

After some thought, I still view my treatment as a means to an end, but the truth is, my treatment comes at a big cost that few people recognise and I can quantify. All I know for certain is that I cannot help my boringness, I plead with thee.

I watched a film last weekend, I will not tell you the name of it because I am about to give away a big part of the plot. One of the characters is accused of running somebody over with his car and his defence is that he cannot remember doing it. Why you wonder? The answer is Chemo Brain. An actor playing a doctor actually says ‘Chemo Brain’. Now, I have no intention of running somebody over in a car, I cannot look at my blind spot anyway, but it made me think, slowly, about the losses I have had to deal with on my current treatment… I do not think that the plot development I mentioned is implausible.

I am backing this blog up with examples, silly examples maybe, but examples all the same, so that you do not think I am exaggerating or feeling overly maudlin. When I say that my days blur into one, and that I have a limited concept of time, that is not an exaggeration. Big Sister told me off a few days ago because I had not spoken to her for a week. If somebody had asked me about this prior to our conversation, I would have said that the last time we spoke was a mere few days before the question came ‘where have you been?’. The answer of course to that question was ‘I don’t know’.

Last Monday, I attended a two hour lecture on the Freudian concepts of Eros and Thanatos in modern cinema. Cultural for sure. The following day, I knew that Thanatos meant death, but I could not remember the word. I had to look it up five times before it stuck and by Wednesday I had forgotten the word again. Right now, if I think really hard, I can remember the titles of three of the six films discussed.

I used to have a good short term memory. Past tense. My brain now seems to be built for one man shows because I cannot remember multiple names in one go. A few weeks ago I watched a film in the afternoon and come 20:00hrs, I had no recollection of what the film was. In my defence, the film was terrible.

If modern technology did not exist, if I did not walk around with constant access to Google in my pocket, I would be a word beginning with ‘f’ and ending in ‘d’. I am constantly making notes and scrolling through my messages to see what I have said to the various people in my life. I live in a constant state of fear that all my conversations are the same and people are just too polite to tell me that we have already spoken about what it is we are speaking about the last time we spoke.

There is an obvious side effect to the side effect of which I speak. It’s called monotony. Do you know what monotony does? It makes a person boring. Dare I say it, it makes a person tedious. My worry? It has made me tedious. Of course, nobody will say that I am a god awful bore, at least not to my face, but they can and will think it. My phone records would probably back this up.

A month ago a friend of mine told me off for asking so many questions in conversation. It plagued me for a week or so, until I realised that it is something I do now to firstly enable me to actively participate in a conversation. Secondly, having thought about and asked a question, I am more likely to remember the answer. It is a far from ideal way of engaging.

It has, in my brief myeloma voyage, never been as severe for such a long period of time. Reading has been a constant difficultly and the chances of following the plot of Game of Thrones were significantly reduced the first day I took morphine, but there is so much more to it now. I want to be able to articulate myself. I want to remember to reply to messages and phone calls. To allow the former, I would be greatly assisted in knowing how long a day is. And finally, I would very much enjoy recalling information mid conversation without feeling the need for a celebratory fist pump.

As Part I draws to a close and on the eve of two transplants, my main questions are, how much worse can it get and how many people will still be around at the end of it?

EJB x

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