Tag Archives: side effects

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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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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Election Night

Tonight, as most of the world is worrying about what the future holds at the hands of the US Presidential Election, with commentators pawing over the the poll results hypothesising whether the world is about to come to an end as we know it,  I thought it may be an opportune time to talk about me. That’s right, through no fault of my own, my priorities do not have a bigger picture. Sure, the national election in a country I do not live in is a tenuous link to a 32 year old multiple myeloma suffer, but bear with me. I’m really going to try to make this work. If worst comes to the worst, I can describe one of the candidates as a cancer. I’ll try to avoid such a cheap shot.

Anyway, why worry about global future when there is my life and my future to dissect? Both situations seem equally ridiculous. 

News channels are running constant, inescapable coverage and have been doing so for weeks ahead of the election. As I type, my TV is a sea of red and blue. I may be on a much smaller scale, but I too, am stuck with a 24 hour analysis of my situation. Similarly, my own analysis more often than not, is far from impartial. Most tellingly, I am bored of it. I think there are many people who feel the same about this election.

Since I relapsed all those months ago, my feet have not touched the ground. Not because I spend at least 60 percent of my time in my bed, but because I do not feel like I have been able to catch up to my diagnosis or my prognosis. Actually, I do not know what my prognosis is, for that, I can only forecast. For everything else, I have been led, pulled and forced in to whatever direction my drugs want to take me and it is exhausting. I am exhausted. I am exhausted of having little to no control over what is happening. Never, have I felt more that my body is not my own.

I went straight from relapse into treatment and prior to my relapse I was trying to return to work. I was tired already. Between appointments, phone calls, financial ruin and paranoia, there was no time for me to process this particular relapse. Now I am stuck in this treatment cycle. I do not have the energy to process. How could I, when there are many days when I do not have the energy to wash, get out of bed or remember to drink? I need to breathe. I need air and lots of it.

I did not expect my relapse and my triple cocktail of treatment to be difficult. I have done it before, I thought. This time round it feels different. I do not have sufficient days to refill my Good Cylinder* to get me through my dark days because the dark days are plentiful. I previously said that I do not like Mondays, but the truth is, as the cycles go on, I don’t like Tuesdays, Wednesdays or Thursdays either.  The more cycles I have (I am now coming to the end of Cycle Five), the harder it is for my body to cope.  I might have two reasonably good days, providing I remain infection free, per week during my three treatment weeks, with one weak off at the end. Entering my flat on a Monday and summoning the strength to leave on a Friday, is a common occurrence.

‘Tired’ is a word that I use far too often. It covers a multitude of sins.  I will talk about my tiredness to anybody who asks. I need a better abjective, because ‘tired’ does not do it justice. I seem to remember that I used to be quite interested in things, I used to regularly up date this blog, I listened to music and I also used to laugh. It is rare for me to muster up the energy to do any of these things. An outsider looking in may feel differently about that, but that is the overwhelming feeling I take from my last few months of apathy. 

Perhaps I do not help myself? I do not answer my phone. I make plans to write a letter or an email and three weeks later, I have done neither. I start things, but unless it is a Killer Sudoku, I do not finish it.It’s not because I do not want to, I just cannot bring myself to think. Never underestimate the power of thinking. Not being able to do it is surprisingly stressful.

The truth is, I feel so lonely. I think what I feel is loneliness. I don’t feel lonely because I don’t have anybody around me, I feel lonely because I do not think it is possible for anybody to understand just how hard I am finding this existence. I had not choice on this. How can anybody understand the level of isolation? My friends are off doing things that people my age do, I struggle to make my dinner (if I can make my dinner). A friend suggested internet dating. The idea of internet dating as some sort of cure to my lonelinesss, just reminded me that I am living with an incurable cancer, which I have had for four years and there is an invisible clock on that, I am barren, I have no money and I can comfortably leave my flat for three hours twice a week. How would that work? Have I given up? 

All of this is what I have had time to think about over recent months. I’m no fool. I use tools to try and manage these thoughts and I talk about it with loved ones and the Medically Trained People. I know what I need to do, but like I said, I am exhausted. The more tired I become, the harder it is to fight. And a fight it is (just like the Election, I hadn’t forgotten about it). I’m fighting the cancer, the medicinal side effects and my physical and mental incarceration. I am confident it is not a losing fight, but there are days when I am defeated. I never thought I would feel this way, but there have been occasions when I vocalised a wish to die that I do not have. 

I never really considered dying before, but when my Good Cylinder is depleated, my quality of life has no resemblance to my pre Myeloma life, I don’t recognise it, and I feel utterly, utterly helpless through fatigue, nausea and Chemo brain. I would not be human if I did not think of an alternative option. I feel so weak and so guilty for thinking it, let alone saying it to another human being. I am alive. I know I need to celebrate that, but sometimes, I am just too fucking tired. 

I can argue both sides of this argument all day long. Flip the coin and there is strength to be found every time I move on from those thoughts. I campaign (get it) for more positivity. My paraprotein is going down. I plan events on my good days. I was even able to attend my annual treat, the London Film Festival 15 times in nine days through sheer determination. I occasionally allow myself an acolohic beverage 🍺🍷for something I call party time. I never forget that I need to be in bed by 22:00hrs.

Unfortunately, all these things do not give me what I need. I need a break. I am at a point where I just need to step away, so I can come back strong enough to cope with my treatment. I know that sounds like I swallowed a new age guide, but despite having a eucalyptus vaposer in my bedroom, I have not. I just need to take a break from the status quo. I’m sick of my status quo. I feel trapped. I, like so many people with this election are disaffected. 

Like this election, my life is unfathomable. I sometimes imagine I am an outsider looking in or I am in a bad Hollywood movie. People will wake up tomorrow and they will have to adapt. I am trying to do just that, unfortunately, it is much easier said than done. As I am learning, a the pace of a snail carrying a tortoise,  you can’t always get what you want. 

Well, I do. I go on my first holiday in two years on Sunday providing nothing bad happens. It’s not a cure, it’s not incorrectly counted ballots, but it’s something. It’s a break and a brief taste of freedom. Maybe that is why I am awake….

EJB x

* The Good Cylinder has an opposite called The Bad Cylinder. They are constantly vying for my attention. You may have guessed that The Bad Cylinder has been winning. 

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I Don’t Like Mondays

Tell me why?

Mondays were once upon a time reserved for me not wanting my weekend to end and my working week to begin. In my current treatment cycle, mondays represent something else entirely more negative and I have to admit that I am no longer a fan of them. Gone are the days full of possibilities of the week ahead and in, well, you’ll see…. There may have been a time in my past when I relished a Monday morning. I liked doning a new outfit for my working week that said ‘I’m coming to get you’. Now, that outfit I find myself in is usually my baggiest pair of pyjamas that I will wear for two to three days straight that says something more akin to ‘I’ll let you take me’.

To explain things more fully, I should probably explain that I was not prepared for the start of my new treatment. As something of a veteran now, I was cocky. I thought that I would start my treatment on a Thursday evening and anything to be experienced over the proceeding three weeks would be something I have experienced before. I strongly believed that I would find the treatment to be m easy, simply because I had done it before and lived to tell the tale.  

Unfortunately, my memory is selective. I had forgotten that in the lead up to taking a mountain of Dexamethasone and daily Revlimid tablets, treating my bowel is crucial. I forgot just how horrible it is not knowing when I am going to be unwell, and the frustration I feel when I cannot get out of bed , or successfully count up to 20 and have to watch from the sidelines as my friends live their lives and I lose my independence. During my first cycle, all of this came at me with aplomb. 

Much, much quicker than I had anticipated or hopes, the drugs took over and I could not get out of bed for two weeks. In these darkest of moments, when all I was was my medication,  confidence zapped, I could not see any longevity to my treatment and my life. All I could see was the promise that I would be taking medication indefinitely, unable to earn a living, both outcomes fail to offer me any reasonable quality of life. I’m not asking for parties every night and a warm bodied lover to keep me company, I just want some consistency and a life I can compare with my peers. Sod waiting for a monday to roll round, Cycle 1 made all the days simple merge into each other and made me feel like bother more than a thin veined puppet trapped in the walls of my flat, losing whatever looks I had left, becoming the charity case people contact out of duty. 

I know. I can feel your eyes rolling. 

As my current treatment is fairly similar to previous treatments, in my first cycle, I opted to take my steroids in one go over four days. My previous experience told me this would give me the most free time in the long run. Due to various factors, I ended up doing this after a week of feeling run down rolling into one long period of ineptitude, as well as m swallowing up my week off medication. That first cycle, was without a doubt the worst cycle I have ever experienced since diagnosis and I haven’t even mentioned some of the, erm, smellier side effects.

With the benefit of hindsight, everything about Cycle 1 was a mistake. From my laissez faire approach to it, to the lack of food in the house that could be cooked in the microwave or with a kettle, to my lack of forethought, to my belief that employment was possible, to failing to realise that three stem cell transplants would not have taken their toll on my already delicate body, to me dwelling on the long term impact and disrespecting the now, and mostly, my belief that nothing had changed. Despite all my inner talk about giving up, I believed I was strong and I could manage it with poise, skill and a smile. 

I was wrong.

I needed Cycle 1 to give me multiple slaps in the face. It made me slow down. It made me fill my freezer. It led to multiple trials of laxatives and antiemetics and I think on that front, we could nearly be there. Wherever there is… 

By Cycle 2, the funding for my Ixazomib had come through, that’s oral Cilit Bang between you and me, which once again meant some tweaking to my schedule was in order. When one takes 22-43 tablets a day, that means some tweaking. Firstly, and most crucially, the Medically Trained Person told me that I was no longer allowed to take my steroids in one go. A development that did not please me at all because I like to get the pain out of the way even if it does mean my mouth will taste like tin for a fortnight, my glands will be swollen for a week and washing my crevices becomes a luxury. The lovely doctor, who is not in the least bit scary, softened the blow by halving my monthly dose of Dexathasone. In case you were in any doubt, I live for these small mercies. 

Unfortunately, for the Cilit Bang to work at its optimum, apparently, it needs to be taken weekly, on the same day as the Dexamethasone. Can you see where I am going with this? I have chosen Monday as that lucky day. 

Monday is now known to me and my family, as Heavy Drug Day. My cleaner, who speaks very little English who comes every other Tuesday must call it something else, which probably includes the Russian words for ‘fat’ and ‘lazy’ as I move from one room to the other to carry on sleeping whilst she cleans around me.

In the last few weeks the perverse nature of my treatment has dawned on me. I wake up on a Monday, I could be in a brilliant, jovial mood on that said Monday, but ultimately, I know that at some point that day I will take a cocktail of medicine that will result in me seeing my insides. If he is in the right place and I am too slow, it will also result in the dog seeing my insides. One day, he ate it up as a healthy snack. And that is what my day becalmed. No matter how I feel when I wake up on a Monday, not matter what time I take the medication, I know how the day is going to end.

Such is the doom I feel, my apprehension now creeps up on a Sunday night. The knowledge that come what may, I am going to make yourself incredibly ill, hardly puts me in the party spirit. Most Mondays, I feel like a fool. I feel like I have been tricked in to taking part in some sort of top-secret military physiological experiment to see how guilible people can be fooled into delivering their own torture. It will make you better they said. It will. Now take all the drugs and every single supporting medication you have to go with it. Let it sit in your stomach and churn. Churn. Churn. Then you will see your family again.

The most brilliant part of all of this, is that it isn’t even the Monday when the worst of the side effects hit. It’s the Tuesday. I could have called this blog ‘I don’t like Tuesdays’ but the truth is I find the anticipation of what is to come and the knowledge that I do it willingly by myself, far more ghastly than what actually happens to me on a Tuesday. 

In case you are wondering, in the early hours of Tuesday morning, I will be awoken from my uncomfortable slumber covered in a light layer of sweat, and I will have to quickly get out of my bed and run to the toilet where I will be sick. That is called Vomit Number 1. I am then likely to be vomit up to four times more by lunch. The nausea will last all day. I will feel so weak that I crawl back into my bed and half sleep, half will the day to be over for the entire day.  

Housemate informed me yesterday, that  I do not help myself in this circumstance. I avoid liquids to rehydrate myself because it usually just ends up coming back up again. Not drinking adds to the overall feeling of lethargy and I do not eat. Not eating tends to make me feel even more nauseated and thus the cycle goes on. By nightfall, because I have spent most of the day in and out of consciousness and smelling like a rotting corpse, I struggle to sleep. My body is in all sorts of pain, from a sore throat brought on by my multiple trips to the toilet bowl, a suffering spine from having to run and crouch at said toilet bowl, all mixed with an indescribably horrid steroid comedown. 

It goes without saying that this means Wednesdays, well the Wednesdays I once knew, no longer exist either. I might not be sick on a Wednesday, but I will be weak. It will be unpredictable. I might be able to go to the corner shop for some fizzy water, I might even be able to drink the fizzy  water and follow the plot of a movie, but there is no way of knowing just what my capabilities are going to be on that day or indeed, on the the day after that. With any luck, I will get three reasonable days before it has to start all over again on the following Monday. 

From what I have managed to understand, the level of sickness I get from one tablet is the normal side effect. According to the leaflet that comes with the heavily controlled Ixazomib, I may experience some nausea after taking the pill, but I am definitely at the higher end of the vomiting spectrum. 

I have tried to change the time I take the pill, I have used five different antiemetics, in various combinations and yet the vomit is just as ferocious. The Medically Trained People tell me it is something I have to deal with. Do not be alarmed, I am paraphrasing, it was put to me in a nicer way than that, with understanding and empathy, but it does not change my circumstance of disliking Mondays. For the foreseeable future. 

EJB x

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My Mouthful 

The way I envisaged my Graft Versus Host Disease to materialise is, surprise, surprise, not the way it has actually presented itself. I imagined and hoped for weight loss inducing bowel movements and feared organ failure. Not once in all the scenarios I fretted over for I don’t know how many months, did I consider the possibility that my mouth would be the unlucky cavity awarded the honour of being infected (if that is the correct terminology) with GVHD. Not once. Nor did I realise when the first ulcer appeared, just how annoying having a painful mouth can become.

Do you know what I have learnt since my mouth turned beige? Throughout the course of a day, I use my mouth a lot. A hell of a lot. 

My cheeks are swollen, my tongue is raw and my breath is lethal. Food collects in significant lumps in the corner of my mouth, requiring a rinse or five every time I eat. Gone is my ability to swallow 10 pills in one go and going is my ability to have a gulp of water without getting half of it down my top. In, is a gentle dribble from the right hand side of my mouth and cracked lips. Delicate flavours are currently lost on me and my beloved  English Breakfast Tea now tastes like soil. I am told by the Medically Trained People that this is all very common, as is an inability to take anything hot and an extreme, almost comical aversion to chilli. 

To top all of that off, it is just plain old ugly. 

   
 
It has been over four weeks since my mouth was inspected by somebody other than myself, and I have been put on a frice daily cocktail of three mouthwashes. Yes, three mouth washes, each to be done four times a day. Even for somebody who spends as much time indoors as I, this is a difficult regimen to adhere to. The mouthwashes forming the triple cocktail are called Doxycycline (an antibiotic) Betamethasone (a steroid) and Nystan (a milky substance that tastes like a hangover). They are absolutely revolting. They taint everything. One day, I had to gobble a packet of Crispy Bacon Wheat Crunches as a palate cleanser. I suspect there are healthier options. 
For the first two weeks, I meticulously did each mouth wash making sure I swirled the Doxycycline and Betamethasone for two to three minutes each. Over the course of the day the whole thing took just under an hour. An hour! Who has an hour for oral hygiene? At my follow up  clinic appointment 18 days after I was prescribed the drugs, I was informed that it was called a ‘triple cocktail’ for a reason, meaning the drugs could be mixed together. Brilliant. A great time saver, but one that tastes rancid. Not only do they taste like something one might bring up on a morning after the night before, they also look like it. 

 Appetising 

As is clearly evident, I complain about my mouth all day every day. My intellect has led me to believe that this is because I use my mouth all day every day. It is also something new. I have experienced many a horrible thing on My Myeloma journey, but this GVHD malarkey that has manifested itself in what is essentially oral thrush, is the most irritating. It’s not a broken bone, it has not caused severe mobility issues, it’s not fatigue and it is not an incurable cancer. It’s trivial.

I know it is not actually trivial. The mechanism of GVHD with its very fine line between good and evil is a science that goes far above my head. It is also a lottery, and so far, it looks like I got the bonus ball. I wanted this necessary evil, I guess, just like everything else it is going to take some adjustment. 

👅👅👅

EJB x

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How You Doin’?

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

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

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

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

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

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

👏👏👏

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

💉💉💉

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

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

💉💉💉

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

EJB x

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Like A Bullet From A Gun

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

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

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

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

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

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

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

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

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

What a depressing thought. 

EJB x

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

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Consent

In this world full of litigation and compensation adverts on digital TV channels, it has become ever necessary for the NHS to protect itself from being sued. For a patient, this means that before any procedure, you are required to sign a form to say you understand what is going to happen, and crucially, what could go wrong. 

In My Myeloma history, I have encountered many a consent form. Of course, when I was first introduced to them in August 2012, it did not register in my spaced out mind what they were. The second (I think) one I signed was for my kyphoplasty and I remember the fear of ‘2-3% chance of permanent paralysis’ like it was yesterday. I have consented for every round of treatment, a few of my biopsies, my two PICC lines and the two transplants since. That’s a lot of  carbon paper. At UCH, the most serious procedures come with an A3 consent form resulting in a log of thin white paper shoved into my handbag pending imaginary filing. My medical file gets the top yellow copy.

At University College Hospital, granting consent in my experience, is done on the day the treatment starts. That is not how St Bartholemew’s rolls. For on Monday, five weeks before my provisional Transplant Number 2 date, I sat down and listened to a kind Medically Trained Person reel off everything that can go wrong with the next stage of my treatment. It is not a moment I relished and one I wish I did not need to experience. I am very much in the camp of ‘just get on with it’, in other words, I want to be ignorant. I know that this is my only chance to beat this, what else do I need to know? 

A lot, apparently. 

Whilst I might not want to know percentages and other figures, other people in my life do. I suppose it is an easier way to assess the seriousness of a procedure. Although, facts and figures never truly represent all that is serious about any procedure. For example, nobody ever told me there was a chance that my previous transplants would turn me into a doubting nervous wreck. 

Prior to Monday’s appointment I was told that the recovery period of an allograft is not like that of the autograft. It is unpredictable and long, and I am likely to find this frustrating.  I was told that I will want some Graft vs Host Disease, but not a lot, and I have my fingers crossed for the rash and minor oesophageal problems type of disease, to be treated by steroids and other fun drugs. I hope the latter will bring some weight loss, but that might be negated by the steroids. I digress. After my last trip to St Bart’s, I had also asked Mamma Jones to find out what the chance of me dying from the procedure is. I wanted to know prior to today, so that I did not breakdown in tears in clear evidence that I am lying when I say that I do not care about facts and figures. Previously, I had been told that a full allograft for myeloma has a 40% mortality rate, which I think you’ll agree is rather high. Mamma Jones was told that my impending procedure has a 5% mortality rate, which is much more palatable. 

So that is what I knew from the various conversations I have had about Transplant Number 2. How was it sitting down and having somebody tell me in one go?  Exactly how I imagined.

I had to sign two different forms, one of them twice. The form I signed twice was not on carbon paper, which was disappointing because it is a material that really is a feat in engineering. Alas, I am left with a mere photocopy. 

In medical speak, I am having an Allogeneic Haematopoietic Stem Cell transplant, it says so on the first page. My donor, aka Big Sister is a 10/10 match (score!). In case you wondered, you can have a transplant at a 8/10 match. 

The aim of the procedure? Curative hopefully, but realistically, when one considers the philosophical meaning of ‘curative’, the aim can also be considered palliative. The key part, and one that I knew already, is that nobody knows which camp I am going to fall into. Right now, I am part hope, part realistic and part, I have no got a clue how I will manage my post Allo life.

The process of consent was very much a tick box exercise. Literally a tick box exercise. We, the Medically Trained Person and I, ticked the following boxes to show that I understood the possible short and long term effects. They looked like this:

SHORT TERM
• Nausea and vomiting

• Diarrhoea

• Mucositis 

• Fatigue

• Alopecia

• Immunosuppression

• Infection and Sepsis (particularly viral infection, differing from the concerns during an Auto)

• ITU admission

• Bleeding

• Transfusions

• Pulmonary dysfunction

• Haemorrhagic cystitis

• Veno-occlusive disease

• Nutrition

• Further treatments (DLI, Chemo, HSCT)
• Graft versus host disease in the form of acute skin, liver that may become chronic with affect on lifestyle 
To treat the above with steroids, I may encounter;

• Diabetes

• Myopathy

• Osteoporosis 

• Avascular necrosis 
LATE EFFECTS 
• Infertility (N/A)

• Male impotence (N/A)

• Menopause (N/A)

• Thyroid dysfunction

• Cataracts

• Lung fibrosis

• Psychological difficulties

• Secondary malignancies (aka secondary cancer)

Do not be alarmed. That’s what I tell myself. Do not be alarmed. It’s just the sort of list one will find inside a packet of Paracetamol, the difference being, having a allogeneic stem cell transplant happens less frequently then taking a paracetamol. I do not know about you, but I chow down one of those bad boys at least four times a day. An allogeneic transplant on the otherhand? Once in my lifetime (maybe).

In other words, this is just a list of everything that could happen. Let us put our hands together and say they won’t all happen. Even if some of them do happen, I have been assured that fixing cataracts is next to nothing when one considers what I have already been through.

After all this, all I know for certain is that I will be taking a lot of drugs for a while to manage whatever side effects I get as well as taking medication to help Big Sister’s cells do their thing. If they do not do their thing, I can have a top up. I did not delve any further into what would warrant this nor what it would entail.

Thus far, I have given you no figures, no percentages. I was given those and I’ll pass them on to you, but on the advice I was given on Monday, I urge you to throw them away again. Both good and bad. For if I end up being in the unlucky 70% or 5% or 50%, knowing the statistics of others, will do nothing to benefit nor influence my outcome. Get it? Good. 

• Graft failure <10%

• Cure rate 30-40%

• Acute GvHD 50-60%

• Transplant related mortality (immediate) <5%

• Risk of relapse 50%

• Chronic GvHD 50-60%

That’s it. That’s everything I was told, condensed into a blog and a four page consent form, psychological difficulties and all. Now, all I have to do is get it done. And then wait and wonder and learn. There is a great deal of learning to come. 

EJB x

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