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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5 thoughts on “It’s Only Da ‘Roids

  1. JC says:

    I am not understanding why you are on 80mg a week. Eleven years ago I was put on 40 mg, couldn’t handle it–big time vision problems along with all the rest, so they dropped me to 20mg. Now on 20mg dex one day a week along with Pom (2mg)-21 days out of 28 and velcade once a week same day as steroids but velcade (sub-q)is on three weeks, off one. No week off for the steroids. Studies have shown that 20 is usually just as effective as higher doses, and keeps the body so much healthier. Back on 20mg after being off for several years, had to go to a low carb diet to offset the rises in blood sugars, weight gain, swelling, and mood swings. Made a huge difference in my health and now very few side affects except some mild fatigue. Still would not do the above 20mg I don’t think…but we learn with MM never to say never. The first cycle of steroids at the 20mg I was has all over the place, moods out of control, going to a low carb diet stopped 95% of that side effect. You would have to lock me up if the docs put me on 80mg. I feel for you, hope this helps you in your discussions with your medical team. Quality of life is important. All the best.

  2. Kirsty says:

    No-one knows how dexamethasone works in myeloma but it just does. In my case only 40mg dose is effective and if it is reduced to 20mg all treatments stop working. By the way, I am so glad you are on Venetoclax. It seems to be a great drug.

  3. mymyeloma says:

    I too am currently on 80mg a week and I hate it but after this month my consultant is talking of reducing it as the current thinking is that lower doses are just as effective. The problem is that Myeloma is such an individual cancer and the experts are still learning about it. As JC says above the experts feel we don’t need to be taking these huge doses.

  4. 4windsfl says:

    It sounds like your medical team needs to read your blog and reassess how beneficial your steroid dosage is. And they also need to put in the Notes on your chart that because of the steroids, you might be a little ‘testy’ and that should be taken into account when you have need of their help for personal tasks. And your having to wait for those personal things is totally unreasonable. I would be like someone on steroids if I had to wait…. still have you in the Pink Light for healing and I’m adding your medical team so they can pay better attention.

  5. Lorna says:

    I’m not sure if your family and friends still read your blog, but I have no other way of sending them my deepest sympathies, even if I am a couple of months late. I can only imagine how difficult life must be for them all. As a mother with a daughter the same age my heart goes out to your mother, dear mamma Jones my heart breaks for you.
    It was the Oscars that promted me to Google your name. I know how much you loved watching them. I was saddened to read of your passing via the JustGiving page.
    So sorry you are no longer with us. xxx

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