Tag Archives: sad

Mother F?&@ing ‘Roid Rage

WARNING – This blog may contain language that people may find offensive.

My friend reminded me the other day that I was once a person who did not swear. I made a point of it. I believed that the less one swore, the more it meant when you actually did swear. A bit like telling somebody that you love or hate them I guess . The rarity makes the use extraordinary. I still believe this by the way. However, on the swearing front, it is just too fucking late. Gone are the days where I replaced the emphasise with random words like ‘fish eggs’, and in are days where I just say ‘fuck’, a lot. It makes me feel so much fucking better. I am also on a shit load of fucking steroids and they make me so angry, everybody and I mean everybody is either a wanker, a dick, a prick or if I am feeling really unladylike, a pillock.

I am on mother fucking steroids. MOTHER FUCKING BASTARD BULLSHIT ARSE WIPE STEROIDS.

The PADIMAC steroids intake was plentiful, but it was top ended into Days 1-4 and then I was free of them for the remaining 17 days of the cycle. I can say now that I never felt the ‘roid rage. Well, not as I imagined it to be, in an Incredible Hulk, I am going to go out and perpetrate violent crimes sort of way. I was emotional and I cried a lot, but I never experienced the caricature of ‘roid rage. On VDT/VTD, I take steroids, Dexamethasone to be precise, every week, twice a week. I can confirm that I am experiencing the Rage, in all its glory and it is fucking mental.

For the last fortnight, I have constantly felt like I am on the cusp of something regrettable. I want to shout at everything and everybody and I do not want to shout at anything in particular. I am holding on to the irrationality of my anger, in the vain hope that at the point of eruption, my better self will remind me that what I am feeling, is a result of my drugs and not my person. I bloody hate it. This side effect is a wank stain. It really is. I do not know what is real, and it is made worse because the anger is almost also accompanied by a want or need to cry. I am awash with emotions and there is not a damn fucking thing I can do about it. I think it would be fine if I was just a steroid abuser, pumping iron in the gym to build up my biceps without a care in the world apart from my physique, but the problem we have with my sorry life is that I actually have a reason to be angry and a reason to be upset. Distinguishing between the feelings that are real and the feelings that are enhanced by steroids is next to impossible.

There are not enough words to describe them. If you promise to not go out and commit a crime, maybe I’ll share some with you? Just so you can see… It was at its worse last week, when I felt like I could not breathe. My outlook was grey or red and there was nothing in between. I actually thought the time had finally come to smash some plates. There was, correction, is, no outlet for it. The feeling is always here, hanging out with me, bubbling away. I fear it. I feel like I am constantly having to tell myself ‘don’t react, it is the drugs, it’s those bitch of a drug, it’s their fault, not yours, you are not mad, it is okay, you are sunny.’ It’s unreasonable and my reassurance is not reassuring. I know it is unreasonable, that I am being unreasonable, but I’ll be damned if I’ll listen to anybody else telling me it is unreasonable. That would only make matters worse.

The feeling, the Rage, can start from something real, like my current misgivings about my lost time or something ridiculous, like my utter hatred of insensitive Facebook updates and then my mind will spiral. Everything and anything will pop in there and it is so difficult to shake it off. I fixate. I dwell. I mope. Today, I spent most the day by myself, and I felt like I was playing mental Jenga all day. Fortunately, I only wobbled, I didn’t collapse completely, but my ability to collapse was always there and the worst thing was, I knew it was there. The steroids told me so. I cannot fucking bear it. I am strong. I should be stronger than the drugs. My Myeloma is stronger than the drugs. See? . It is little things like that. The anger is not directed anywhere.

I will just have to remember my twin’s magic words, ‘It’s just da ‘roids’. It is. I know it is. Thank you, Laurie.

I am going to say this once and only once… Steroids are such a fucking cunt.

Best wishes,
EJB x

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The Bad Day

Yesterday was a bad day. It was probably The Bad Day. The thing with myeloma, is that they’ll be more Bad Days. I realised that properly yesterday.

I like to think that I am stoic and I deal with My Myeloma as positively as I can. The sad truth is, that on a day like yesterday, even the strongest of strong bad asses are going to fold. I folded. I guess, as the cliche goes, it’s the getting up again that matters. I didn’t get up yesterday. I have since I started this journey become a firm believer in letting it out. And boy, did I let it out yesterday. There is no use pretending that I didn’t. I did. My emotions yesterday were real and they played out something like this:

Upon hearing my dreaded news, I believe my self preservation mode kicked in and all I could think of was to not cry in front of the doctor or nurse. Sure, that made it quite difficult to process what I was being told and you know… concentrate. I didn’t ask why my mouth and nose were swabbed, I didn’t ask how bad my increase was. Is it actually just a step away from donating my body to medical science? I didn’t ask. I just had to get out of the room and I didn’t want anybody to ask me how I was. I wanted to go home.

That did not happen though. I had to pee into a pot and make an appointment for next week. I got the peeing out the way, but making the appointment was near impossible. I did not have the energy to overcompensate my tears with a joke. I just whispered to the receptionist as she dilly dallied over her computer. Rather nicely, my transplant nurse waited for me to do this to check that I was okay. I wasn’t. She got the lift down with me and again, all I could think of was ‘don’t cry’ and ‘don’t ask me any questions’. She did though and I think from that point on, I could not help but enter the longest crying session I can ever remember experiencing.

Of course, I could not go home straight away. Life is not that simple. I had to pick up some drugs from the pharmacy. I was told that it would be 30 minutes. It wasn’t. It took over an hour and that was an hour of me sitting on the ground floor by the Garden Lift crying, hoping that nobody I knew saw me. Again, that did not happen either. It would be inappropriate to rank my doctors by preference, they are all Medically Trained People after all, but my least favourite doctor walked by twice as I sat there blowing my nose on the lining of my coat with mascara running down my face (FYI, I strongly suspect given the time between sightings, he was having a crafty fag, Medically Trained People should know better). My favourite Macmillan lady also saw me and with her I didn’t try to hide it. I just let it out. More tears and more snot. Consequentially, my counsellor called me later in the day to arrange an appointment. That’s where your charity money goes folks.

If waiting wasn’t bad enough, I had to tell The Support Network. I have a vague recollection of saying to a Medically Trained Person, I do not know who of course, ‘what am I going to tell people?’. Apart from Mamma Jones and Big Sister, this was done via the group text message. I am a coward. The responses were heinous, for each text I received in reply, I cried some more. It’s not just about me. It would appear that people do care and they do love me. It was too much to take. Yoda was told not to come to the hospital, because I think at that point, if I had seen somebody from my actual life, I would have had no option but to roll around on the floor and/or to destroy the biscuit display in Costa whilst spitting expletives that rhyme with ducking hunts. I needed to be alone and I needed to process.

On getting home, via taxi, because the thought of waiting any longer in that building for my transport made me want to rip out my intestines, I sobbed. Actually, I howled. I walked down to my kitchen, opened my plate cupboard and thought that smashing its contents was an awesome idea. I then remembered that I hate cleaning and as Middlesborough tells me every time she comes to the flat, I do not have enough plates in the first place. So, I vetoed the smashing and instead, made my way to my bed and cried some more and reached for the tissues.

I tried to stop looking at my phone. I am probably still not answering enough of my calls because yesterday I did not know what to say and today, I want to forget about it. My favourite comment yesterday, which I received from several quarters was ‘it is fucking shit’. ‘Sorry’ worked to some extend, but I wanted venom. Only venom was going to stop the tears yesterday.

After a few hours more of crying, I moved on to the paranoia. Why was everybody being so nice to me? Why were there so many sympathetic faces? Why did they say ‘if’ I have my transplant? Why did the doctor think it was a good idea for a family member to come next week? The questions went on and on and on, and yesterday, the only answer I could come up with, was ‘because I am going to die’. And then I cried some more.

And then, I thought I better keep my evening plans because the alternative was to carry on crying alone on my bed and I did not have enough Kleenex. So, I went out and what do you know? I cried some more and had to wipe my nose on yet another coat (black cape if you are interested).

Getting to sleep yesterday however, was surprisingly easy. I was exhausted. The shock had taken most my energy away from me and then the tears took what was left.

Not everyday is a barrel of laughs in Myelomaville. I felt loved and alone all at the same time. I also just wanted the day to end.

As for today? I got out of bed.

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EJB x

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Diagnosis

I remember the moment I was diagnosed like it was yesterday. I remember lying on my bed on the Acute Admissions Unit on the second floor of UCLH, on a Friday afternoon, with Mamma Jones and Big Sister at my side, with the junior doctor sitting by my feet on the righthand side, telling me that I had myeloma. I remember crying. I also remember Big Sister crying, the doctor crying and the two nurses leaving their station. I remember the medical stuff that followed on the days after, my formal diagnosis, the tests, the pain and then the visitors. I do not really remember telling the people I love that I had cancer.

I know I have thought about what it was like for them before, but I have never really thought about it. I have not had the time. In my current limbo, I have a lot of time.

There are many people in my life who are dear to me, and try as I might, I do not remember telling them. Apart from the above, I remember telling A Twin on the phone. I remember telling a Lali as she sat at the bottom left of my bed, for her to repeat over and over again ‘okay’. I remember GB calling me, for me to finish my happy news for him to tell me that he had to perform in five minutes time. And I remember my friend Katy calling me crying, not knowing why I was in hospital for me to pass the phone onto Mamma Jones on the Saturday morning because I could not speak the words again.

I know there were a lot of people that passed the message on for me like a communication tree. I do not remember my conversation with the Barber of Northampton, but I know I tasked him to inform people, and I know that Middlesborough and WM told the work folk about My Myeloma. I could not do it myself.

I do not know what happened when I was not around. I do not know how my family took the news nor what they said to each other. I do not know what my friends did or whether they discussed it with each other. I found myself reminiscing about the happy August of 2012, with some friends and they told me about how they managed the early days. I can smile now about the pain I experienced before I was admitted to hospital, not knowing the cause of my pain and how I joked about it being cancer. I cannot joke about how people managed my diagnosis. I do not know what people did or said out of my view. I do not know if it is wise for me to think about it. I found out yesterday that my best friend managed it by crying under a hand drier in a toilet, she was probably inebriated, but I know her, and she probably would have done that with or without the beer.

I think the shock of finding out that somebody has cancer is something many people would wish to never experience. The shock of finding out that somebody young has a cancer with no cure is something else. It is unexpected and it is a tragedy. I experienced that reaction. I was overwhelmed by it. I experienced it with everybody who came to my bed, sent me a card, wrote to me or were kind enough to send me gifts. My diagnosis pulled the rug from under not only my feet, but the feet of all those people in my life, especially those who love me.

My friend said to me that she thought it is easier for people to understand what has happened to me now, if they had seen me during those earlier days at UCLH and watched how I become accustomed with it. I do not know whether she is right. My sister said people would forget about me once the shock of my diagnosis had passed. I do not know whether she is right either.

Six months on, My Myeloma continues to have a life of its own. Every day it tugs a little bit more wool away from below my feet and everyday is a struggle whether I show it or not. I live it everyday. It is with me everyday. Big Sister, Mamma Jones and My Myeloma are my constants.* My Myeloma really is with me everyday. I cannot see a day when it will not be with me. Now, however, six months on, the daily impact of my buddy, is not felt by the masses who came to my bed, sent me a card, wrote to me or were kind enough to send me gifts. Their lives have moved on and now the shock of my diagnosis is a memory. They do not live it everyday. The fact my life has been put on hold is not news anymore.

My Myeloma was far easier to manage when it was.

EJB x

* It should be said that I have people who are my weekends and those weekends are like a hot water bottle and EMan’s paw rolled into one.

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