Tag Archives: anxiety

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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Out Of Sorts

I have now had two doses of Daratumumab, and contrary to earlier theories, I am struggling to find my feet with it. As I write this, my last dose was on Thursday, four whole days ago. And since last Thursday, I have been feeling, how do I put it… out of sorts. ‘Out of sorts’ is the polite way of putting it. It’s the sort of thing a family would say in a post war drama set in a remote village, who are attempting to shield their neighbours from fact that their matriarch cannot stop kissing the wallpaper. I haven’t been kissing the wallpaper, I don’t have any wallpaper, but I have, as I said, been feeling out of sorts. I do not know what happened during my 12 hour visit to St Bart’s on Thursday, but since then, I have been feeling uncontrollably, unreasonably and inexplicably out of sorts. 

As somebody who used to enjoy a drink or five, I was able to diagnose myself almost immediately. Without any doubt, I can say that for the last four days, I have been feeling uncontrollably, unreasonably and inexplicably anxious. 

Anxiety is not my friend. Forgive me for pointing out the obvious, but it has never been my friend. Back in my pre myeloma life, I was familiar with this level of anxiety. That’s why I know that I do not deserve to feel this way now. Once upon a noughties,    at my very worst, I would have gone out on a Friday night, drank far too much to be deemed a lady, delivered to persons unknown a healthy dose of generous mouth and then rounded off my evening by doing something I should not have done with somebody from my office. I would then have to wait until the Monday morning for everything to be at peace in my mind again. In the meantime, the alcohol I consumed would trick me into thinking that the world, that’s right, the World, hated me and that everybody I knew was laughing at me. Not only was everybody laughing at me, they all thought me a simpleton. At least back in my days of drinking, I would have had, initially at least, enjoyed myself. The alcohol fuelled anxiety was a payoff for having fun. On Thursday, I did not have that type or any type of fun; this feeling of anxiety just engulfed me and it has been my constant companion ever since.

Why I ask? Why, indeed.  I had a counselling session last Monday and I felt fine. I even commented that I felt like I had nothing to talk about because everything seemed to be so, under control. Famous last words. Tentatively at least, I was managing the beast that is My Myeloma. And then, Thursday came…

Thursday’s trip to the hospital was not easy, in fact, like my visit the previous week, the visit was frought with uncertainty. The day before, I was told that the IT system at St Bart’s was down, which meant that once again my drugs could be delayed. The threat of another delay spun my head into multiple directions (that usually happens when one is ‘spun), but understanding that these things can happen, I encouraged myself to stay calm. By the close of play on the Wednesday, I was told that the Pharmacy had my prescription and all being well, and with a sigh of relief, my treatment would go ahead as planned. I arrived at the hospital the following day at 10am, and I could immediately sense the problems this IT issue had caused. The handwritten sign in the waiting area saying ‘all chemotherapy will be delayed by 2-3 hours’ was also something of a giveaway. 

I was shown to my bed for the day 30 minutes after my arrival. By midday, I had yet to have any tests done, seen any drugs, had a cannula fitted or been told anything about the plan for my day. I thought my day would have followed a similar course to my first day’s treatment. I could see that the Medically Trained People were stressed, so I resisted being too much of a nuisance but by 1pm, I had pressed the magical bell twice to see what was happening… It was not forthcoming. Mamma Jones was due to pick my up at my flat at 8.30pm, so I was ever mindful of the time. My friends delivered my lunch around this time. I have little memory of this, but I know what I ate and that they refused to take any money from me. My friends are nice like that. 

It was around 2pm that medical things started to happen. The cannula went in and I was given my pre-meds. Unlike the previous week, where I was under near constant monitoring, okay that was an exaggeration, hourly monitoring, monitoring had significantly dropped off in comparison. My memory is a bit hazy, and I’ll get to the reason for that shortly, but I think the main infusion started around 3-3.30pm. Before my treatment could start, I was told that I had to be booked in for a bed for that night thus causing a further delay, although I was told that I wouldn’t actually need said bed, because they had started too late for me to be treated solely by the Daycare staff. 

Only with the benefit of hindsight can I see that this environment might be the reason I was on edge. I like a timetable, and whilst I realise that My Myeloma is unpredictable,  the timetable I had for that day went out the window before I even arrived. The plan for Mamma Jones to pick me up and take me back to the land of the Fens was by that point on Thursday afternoon also under threat. I remember thinking if that was under threat, would future weeks be similarly uncertain. And then, a panic set in. 

This might be the time to say that prior to last Thursday, if anybody had asked me how I felt about my first dose of Daratumumab, I would have told you a story about how it left me with 3.5 good days a week. In fact, so certain was I of how the treatment made me feel and how it was going to fit into a week of my life; I would have told them about the blog I was writing entitled ‘3.5 Days’. 

My first dose of Daratumumab was on the 20 April (you can read all about that 10 hours of bliss right here https://ejbones.wordpress.com/2017/04/22/day-1-take-2-part-ii/). I suspect it was a result of the 20mg of Dexamethosone taken prior, but for some reason I was extremely tired in the days that immediately followed my treatment.  The 10 hours I was in the hospital would also have played a part in the sleep that followed. By Sunday 23 April, I felt back to ‘normal’. Well, as close to normal as my body allows.

So there you have it, it was all so simple. Based on one whole week of funny feelings, I felt safe enough in my assumption that I would now be giving up 3.5 days of my week to my treatment and I was able to start telling people about it. My plan, my weekly schedule, would all being well, look something like this:

• Every Wednesday morning, I am required to go to St Bart’s for blood tests – 0.5 days

• Every Thursday would be taken up with treatment – 1 day  

• Every Friday and Saturday, I would be in bed getting over my steroids – 2 days  

All in, I had calculated 3.5 days a week given to My Myeloma treatment and 3.5 days a week for myself. I enjoyed how the title of my non-existent blog had two meanings. Depending on how you fill your own cup, one could read the title as 3.5 good days or 3.5 bad days. Evidentially, it doesn’t take much to entertain me. 

Back to the Thursday at hand, and I could see this plan, this schedule I created for myself very quickly, slipping away. 

I do not know if it is a management technique when I get frustrated with things going slowly, or if by Thursday afternoon I was genuinely tired, but I soon found myself snoozing. The environment of a chemotherapy daycare ward, makes for a very broken sleep. This resulted in me confusing my dreams with reality, which as time has gone on, I realise added to my anxiety. Even now, I do not know if conversations I had with my lunch time visitors and a later visitor actually happened, or if I dreamt them.

Sleep normally relaxes me, but my sleep on Thursday, despite making the time go faster threw me into a state of confusion. At the time, I recall telling somebody that I did not know what was real and what was not. No wonder I still feel out of sorts.

I’m not shoehorning it in, I think this nicely brings me on to another cause or should that be contributor to my anxiety and that is my drugs. I am on a lot of medication and although none of these have changed in the last week, I cannot help but think that one or some of them have set my teeth on edge. At the bare minimum, the drugs could be the reason I was in and out of such a broken sleep. The broken sleep has given me that same feeling I used to have after five too many drinks. I feel I was rude to my friends and I feel like they are were disgusted by me. I have checked with them, and I wasn’t rude and I did nothing to create disgust. And yet the anxiety still exists.

Tricks are still being played upon me. Even today, I feel irrational. I could describe my irrationality at length, but I think all you need to know is that I am still out of sorts. 

I wish I could put my finger on the cause. I’m fairly certain that my friends do not think I am a cretin and that those who visited me on Thursday did not leave thinking I was metaphorically kissing the wallpaper. I keep telling myself it is only my medication, much like I do when I am on my steroids and I can feel myself about to blow. This feeling is not me. I am embarrasssed by my uncertainty, and I hate feeling vulnerable. 

This doubt is not me. 

This anxiety is not me.

I wish I could finish this blog with a conclusion, with an ending to this particular story, but this is real life. It’s my life and things do not fit neatly into a box. I can tell you that I left the hospital shortly after 9pm last Thursday and the parting words from the Medically Trained Person was that there has to be a better system for getting and admitting the Daratumumab. For my sake, I sincerely hope for this to be true.  

I need some structure. 

EJB x 

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The Frenzy

I am well known to be able to work myself into quite the frenzy prior to my clinic appointments. My version of a frenzy anyway, most the time such a frenzy is something to be stewed upon in silence; that way I can pretend it is not a big deal. There are many factors that can heighten or lower my worries, but regardless of whatever they may be, there is always a level of anxiety before any appointment with a Medically Trained Person. It’s guaranteed and I believe that is why I require so much sleep after such an appointment.

Yesterday, my pre clinic appointment anxiety was particularly high. It had been brewing since last Friday and it is for this reason that I opted to wear a black top yesterday morning instead of the cream one I actually wanted to wear. Nobody needs to see back sweat through a silk cream blouse. I do not believe that is what a Marks and Spencer’s intended

The reasons for my worry, were as follows:

😁 I had a MRI scan on Tuesday, that I did not request, but was arranged because the Medically Trained People wished to see my progress since my relapse. In my mind, it is part of a conspiracy.

😁 Regarding the MRI scan, I was told at my last clinic appointment 28 days ago that I needed to have the scan before my next appointment so we could discuss my progress. Progress means change, at least I think it does.

😁 At my last clinic appointment, I was also told that my paraprotein had to get to 10 or below before I could have the referral to discuss my transplant options. After that appointment, the transplant would likely take place two months later. At that time, I thought my paraprotein level was 15. As in, years away from 10 or below.

😁 Last Friday, I found out that instead of plateauing, and in spite of being on reduced chemotherapy in October, my paraprotein level had fallen to 12 as of 23 October.

😁 Finding the letter with these results on my return from a trip to the hospital, made the excursion to UCLH for a simple blood test almost worthwhile. As the blood test also included a paraprotein test, it meant that there would be an up to date paraprotein level when I visited they hospital six days later, something that does not usually happen…

😁… Thus there was a chance, or I let myself believe that there was a chance that, that very result could be below 10. There was a chance that I could get that referral and by default, I would get some tangible put it in my diary progress.

Like any old pro, I spent most of my week trying not to think about what would be said at the appointment, whether it be good or bad, which in reality meant that I thought of mostly nothing else… Good and bad.

Upon arrival at the hospital yesterday, The phlebotomist took five tubes of blood instead of three. The conspiracy continues. As I checked in on the fourth floor before my urine sample, I noticed that there was a certain Medically Trained Person doing the clinic who we shall call, The Bad News Deliverer. 😁

As I sat patiently and waited for 95 minutes for my appointment, it became apparent that there were only two doctors running the clinic and the only one I knew was The Bad News Deliverer.

In a nutshell, the presence of The Bad News Deliverer + a long waiting time x everything else = 😁😁😁😁😁

I hid it well. I genuinely did, for The Bad News Deliverer noted when I sat down for my appointment that it is easy to forget the impact of myeloma on my life when I always come in for my appointments smiling.*

So, having monopolised my thoughts for much of the week, and I dare say the thoughts of the immediate Jones Clan, I can now say that the clinic appointment was anticlimactic. It was anticlimactic because the Bad News Deliverer did not deliver bad news, nor did he deliver any glimpse to the end of this limbo. What I got instead was a very normal clinic appointment, well apart from the start of it where one could have easily thought I was referring to myself in the egotistical third person. I was actually quoting somebody else talking about me whilst I was in my presence. It may also have come across as egotistical.

Emma just needed time to realise that that the behaviour and and comments from some people in her life were not acceptable and she needed to learn how to manage them; Emma uses CBT, well, she has developed her own version of CBT; Emma puts on a brave face, it is easy to forget that she has bad days’

Anyway, so yes, regarding my treatment I had nothing new to mention to mention. That’s a lie actually, I’m experiencing slight ‘bladder issues’, but I forgot to mention them because I was nervous. My bloods were fine and my paraprotein has reduced to nine.

Nine is less than 10!

I asked about the referral as discussed previously and the Bad News Deliverer said that he was not sure about it, so he would speak to the necessary colleagues and get back to me. I understand that this response is not his fault, but it was not one that provided me with the clarity I wanted, nor the one I thought I would get when I was once again in single figures, and thus my frustration will continue for at least another month.

Using my own version of CBT however, I have spent my time since the appointment seeing the bright side in what was discussed. Obviously, the main positive is that my pp continues to go down and for my body, I do not consider reductions of three to be a plateau. History says five cycles in, it’s actually good for me. Secondly, the MRI scan showed that there had been improvements since my previous scan and there was evidence that the radiotherapy had worked. I still have evidence of the disease, but I could have told you that every time I bend down, rollover, stand up or move. Lastly, I am telling myself something that I have learnt the hard way, it could have been worse and I should therefore be happy with that.

Yesterday then, I entered Cycle 6. Cycle 6 includes the full drug regime of which I have become accustomed. It’s not Groundhog Day; it’s progress. Yes, it is most definitely progress. At least, that is what it has to be.

EJB x

P.S. I am very aware that this whole Bad News Deliverer thing is irrational, and evidently not true. The person in question is a very nice human. I am working on this.

* Not blowing my own trumpet or nothing, but this came up because news got back to The Bad News Deliverer that the talk a fortnight ago with the Macmillan staff was well received. I’m playing down what he said because, like I said, I’m not one to blow my own trumpet. 🎺

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My Worth

With the exception of the first few weeks of my relapse when I near dehydrated myself due to the constant flow of tears, leading those close to me to believe that I had given up the good fight, I have spent the last two months being the brave old soul that I know and love. The smile you see, is not a fake one, I am committed to finding the best in the situation I find myself in. Even if that situation involves my ever expanding waist. I know I am doing well given my current predicament because my counsellor has told me so. The reason, I believe I am coping, is because when I feel a problem looming, I acknowledge it. Hiding it is unhealthy and let’s face it, I’m unhealthy enough as it is.

In the last fortnight, coming off the back of my dodgy stomach, I have noticed that I am at risk of rocking my battered paddle boat. I’m snappy and my sleep is broken by something that is not related to rolling from left to right or my weak bladder. At the forefront of my mind is money. My impending lack of money. It’s a multilayered mess of stress and uncertainty, both in the short and the long term.

On 30 August, I officially went onto nil pay, which means exactly what you think it means. Or at least I think it does. Until I went onto nil pay, I was unable to apply for the government handouts, which I hope are going to keep me afloat until the end of the latest volume of My Myeloma Tale. Due to my unexpected illness, I was a week late in applying for the three benefits I think I am going to require. At least, the three benefits the various faceless people I have spoken to on the telephone have told me I can apply for. The applications were long and they were tiresome, and despite the fact that all three are now in the post, I am not any clearer about how much money I am going to receive.

Thankfully, I am already in receipt of Personal Independence Payment, which was once called Disability Living Allowance. Since I was granted this money in December last year, I have used this money for the reason it is given to me, to help me live my life around my disability. Until I have confirmation from the Department of Work and Pensions and Islington Council, this money has become my main source of income. A source of income that does not cover my rent, let alone my food delivery or paying somebody to clean my flat.

I am also receiving some sort of sick leave entitlement, but it is not Statutory Sick Pay, which I was recently told I have exhausted. Prior to this, I sought advice from Macmillan and I used my own smarts to research the benefit system. It’s a pernickety system, and having discovered that I am not entitled to SSP, I no longer know if the several forms I completed last week are correct. As soon as I begin to question this, my brain explodes with questions, anxiety and paranoia over what money I will get or not get as a result. It goes something like this:

em>If I am no longer eligible for SSP, does this mean I am entitled to more of less money? Have I committed fraud by saying I am not receiving SSP but I am receiving the equivalent amount of money from another source? Why have I exhausted SSP, because Macmillan advised me that it resets after eight weeks of full time work and pay? I need to sort my pills out. The DWP guidance is unclear, do I need to phone another anonymous help desk number to get an answer, and if I do get an answer, how do I know it will be the correct one? Oh gods, I am tired. Does this mean that I should have applied for ESA instead of income support? If that is the case why wasn’t I informed that I had exhausted SSP and given the necessary form? WHY AM I STILL CONSTIPATED? I need to sleep. Can I afford to buy a can of Rio? Will I have to reapply for everything? Will the money come through before my rent is due on 15 October?

To date I have applied for Income Support via the Job Centre, which required a 45 minute phone call followed by a 14 page form received through my letterbox two days later. The application was also accompanied by two months worth of wage slips, a copy of my newly issued passport, my PIP entitlement letter and letters confirming my nil pay. For housing benefit, the form was a mere 29 pages plus seven support documents including those listed above and my tenancy agreement, my P60 and a copy of my bank statement. Only one telephone call was required asking if my tenancy agreement arrangements would fall within their rules for assistance. Yesterday, I completed my final form, which I requested eight days previously for Working Tax Credits. It was a form, that at this stage at least required no support documentation, but only asked for my financial situation up to April 2014. The forms cost me £10 in photocopying and £2 in stamps. Stamps!

Having spent most of my good hours last week repeatedly declaring my single status, looking at my weak bank balance and putting pen to paper to say that I need somebody else’s help, has surely made me question my existence. When I am not being melodramatic, it just makes me question the choices I have made and continue to make. I do not know how it is possible to fit your personal worth on a form, but that is what I have had to do, and it does not amount to much. And then I start to think:

‘What if I do not get housing benefit? What if they do not approve of the number of tickets I purchased for the London Film Festival even though they are going to get my good cylinder through Cycle 4? What if they do not accept the tenancy agreement? My back hurts. Will I have to apply again for the tax credits to reflect my nil pay? Why was there not space for this on the form? Is my landlord going to put up the rent? How am I going to get to the hospital? I have cancer.’

If all this was not enough, everything else going on around me has become a chore. Answering my phone is a chore. Speaking on the phone is chore. Emailing is a chore. Things that will only take a few minutes feel like they are the equivalent to writing a dissertation, hell, even keeping my blog up to date has felt like a chore. Like many things, I know that the minute I do them, I feel better, but I fear managing them in the first place. I do not trust my mood, which I fear is assisted by the Dexamethasone, Revlimid and Cyclophosphamide.

Think I am exaggerating? Well, I am fortunate enough to be going on an externally funded holiday in a fortnight, and last week, the tour operator said that I needed to get medical approval before I travelled. Not only did this cause me stress, but it caused Mama Jones to worry, which then increased my stress. I know it increased my stress level because I initially ignored it, shouted at my mother and made her mange it. There is only so much my drugs allow me to deal with in a given week. The situation was not helped by the fact that the Medically Trained Person who said that I could go on holiday was not in last week, and another Medically Trained Person said that they did not think it was a good idea. It was yet another thing to make me feel itchy. Fortunately, the approval came through yesterday, but it threatened one of the few things I have that I am genuinely looking forward to.

I am also in the middle of sorting out my long term financial security, and this, above everything else makes me feel pressured and most uncertain about my future. There is nothing I can do but wait and continue to believe that my treatment will be successful. In the short term, I have to make sure that I get out of bed everyday, because this week to date, the inclination to do so has left me. I used to me good a dealing with pressure, but this is not the electricity going off at a campsite full of irate customers; this is my life.

As with the pain in my back, I feel like all of this is taking my focus and energy I should be giving to my treatment, away from my treatment. I have felt worse in the last few weeks than I have in a long time, and I believe that this is only slightly related to my medication. Money is stressful and having cancer does not change that, although in an ideal world, it would do. It’s the reality of having cancer, and right now, I truly wish it was not. Chemotherapy is enough for me.

I will leave you with this thought. According to a handy leaflet from Macmillan, a single, childless person under the age of 34 can get a maximum £350 of benefits a month excluding PIP and ESA payments. This means that I will get between £850-2100 a month; I just have no idea where on that spectrum I am going to end up. What am I actually worth?

That equates to a sleepless night or two.

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Helpful

💶💷💵💴

EJB x

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Homecoming

I have been back in London Town for seven whole days. An outsider, or in fact, anybody who does not live inside my brain, may think that I have been overjoyed by this development in my recovery. Progress. Progress and independence. “Yes”, I have heard people say.

If I am honest, I am ambivalent to it. I see the progress, especially physically and I love being in my flat, but most things just feel flat or a pretence. Any fanfare I imagined did not happen, and the whole thing just feels like one big, fat, tormented, anticlimax. Nothing changed. I do not know why I imagined or hoped my return to be a miraculous return to form, but it is not. I feel exactly the same.

Prior to me having a date of return, I was desperate to return to my life in London. Absolutely desperate. As the date approached however, anxiety appeared in my life. And I mean real anxiety. Could I look after myself? Who would look after me if I couldn’t? How was I going to fill my days? Would anybody even notice? Would Bruce remember me? And so my internal monologue went on. Life before transplant seems quite different to the one before, and in the weeks after my transplant, I felt more and more like a forgotten treasure. The metaphor does not quite work however, because I am not sure if a treasure can have social anxiety and feel anger, fear and loneliness. That is what my transplant did for me. Do not get me wrong, I felt and feel absolute unconditional love in the lands they call the Fens, but I felt and feel disconnected from my life in London. That disconnection has only mended slightly within my current geographic proximity. I have no idea how much of this feeling is real or perceived. On Monday, my return day, my feelings were in a word, overt. Overt indeed. I had a long, and when I say long, I am talking more than two hours worth of crying. It might have been four. Four hours of snot, tears and doubt.

I opted to come back of course, in spite of the tears. I reasoned that the reality could not be as bad as my fiction. I have been saying and thinking a lot this week that I need to rip off the plaster. I need to put myself in ‘difficult’ situations to prove to myself that they are not difficult at all. Every single time I have done this, I have seen that it is not as difficult as I thought, but I do not feel like I have garnered the satisfaction I should have done from doing it.

I was very kindly reassured on my first day back that I could take care of myself. This was a correct assessment. I may have forgotten what buttons to press on my remote control in the dark and had to remind myself just how many steps it takes to get to the toilet in the dark without hitting a wall or a bike wheel, but the rest of it? I can just about do the basics.

Physically, London is doable. I have had a few close calls. Yesterday, I was in a Tesco a bus ride away from home and I genuinely thought I would not make it back. I told myself off and hopped on the 38 and then lay down for 15 minutes, in anger and with pleasure in equal measure. On Thursday, I had to get a taxi because I thought that I would not make it to the end of my street on foot, let a lone to the hospital. On Wednesday, I fell whilst asleep making soup. But then, on Tuesday, I walked for fifteen minutes by myself and did not get tired (right away). Last night, I had a bake-athon punctuated with regular rests of course, but I did it by myself.

Outside my front door is scary, I cannot escape that yet. Outside, people cough on the bus and think they are more entitled to a priority seat than I because they have grey hair. Outside, people expect me to put my smiley, happy, coping face on. Outside, I have to do the roadshow. Outside my head, people do not understand, no matter where I am. It’s just harder to hide it here.

I do not wish to mislead you. I can still laugh and converse, it just feels subdued. I am subdued. The EJJ is subdued and that continues to be an infected mosquito bite.

Now, if you excuse me, I need to go rip off another plaster.

EJB x

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Deja Vu

Via Email

No, no, no, no, no.

I cannot believe we are here again. I can’t believe I have let you back in to my life with such ease that for the last six nights, you have consumed it. Insomnia, I thought we had been over and over this. You are not good for me.

During our most recent encounter, I felt a change. I am totally at your mercy. You’d been creeping into my thoughts over recent weeks, but since last Friday, you have really got your claws into my psyche. I blame the drugs. The drugs got us here. Bloody fake menopause and it’s stupid syringes. Bloody cyclophosphamide and it’s bladder irritability. Bloody toothache. You adulterous cretin. That’s why this time feels so different, so out of my control. In addition to the anxiety and over thought emotions that usually accompany our dalliances, and the daydreams of things that will never come true, this time, you make me want to move. By move, I mean it’s involuntary and it is when I want to sleep. You make my feet move, my hands move and my toes. You make my pulse race. My brain is going at 100 miles per minute and so too are my extremities. You really got me this time. Goddamn you. I hate you.

It’s so unfair. You may be caused by a chemical imbalance, but I have also let this happen. I perpetuate your behaviour. Take this evening for instance, I didn’t need to eat those pork scratchings before sleep did I? But I did, and then you woke me up after all the effort it took for me to fall asleep to tell me I was thirsty, despite me taking a litre of water to bed. Once up, that was it. I was in my head again and in The Daily Mail’s gossip column.

You are making me grumpy in my days. Ordinarily, I would not have thought that somebody was a stupid twit for suggesting to me the day after I had it, that the only side effect from my chemotherapy was ‘just’ fatigue. Today I did. It was a rash judgement, but one that I could not help. I wanted to scream ‘you try having chemotherapy man who has stolen Scooby Doo’s vocabulary and see how hot you feel’, but thankfully, I held it in and just passed my feelings onto neutrals. Tits.

I think about you all the time. I think about you in the day, I think about you when I try to go to sleep and I dream about you when I am sleeping. I hate you Insomnia. You made me yawn in Middlesborough’s face. Several times.

We are at an impasse.

So, Insomnia. I would really like it if you went away again. You know I can’t say no.

Release me.

Emma x

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Mountains and Molehills

I thought that my time off would be easy. My body is not undergoing any treatment, my energy levels are high and I am no going to the Centre every day. It sounds heavenly and I am sure that there are many people who think I am fine. The truth is, that this time has been far from easy.

I cannot really say how difficult I found my diagnosis and PADIMAC, I know I did, this blog tells me so…. I can say that I have found this limbo equally as difficult, though fortunately, over the last week, I have been able to come to terms with the challenges I have faced, both actual and manifested.

A bit of time off is a gift. It’s true in general life, but when one is undergoing cancer treatment, a bit of time whilst you are feeling well is more than welcome. A bit of time. Six weeks off is too long. I constantly feel trapped, I feel trapped in my flat, trapped by my body, trapped by the schedule and trapped by my situation. I have gone from having a full time job and an active social life pre cancer, followed by a hefty treatment schedule, to nothing. I wake up everyday and find motivation difficult. While somedays I do have plans, this limbo has seen me spend a lot of time by myself. More time than I care for. I am no mathematician, but I wager that on average, I spend 80% of my days alone. As boring as PADIMAC was, I saw more people than I do now. I had drivers, nurses and Macmillan Support Workers to bug when I had conversation aplenty. I’d store it up and unleash the beast. In the last six weeks, I have found myself in frequent conversation with myself. We get on well, but it is easy for us to create dilemmas. Us Geminis really are drama queens.

I find myself now, yearning for the end to this volume of My Myeloma. It’s more of a fantasy. I spend this limbo fantasying about all the things I am going to do when the myeloma is sleeping. I look forward to things. I have one target right now and that is not making sure I get out of bed before midday or ensuring that I have some structure to my days, the target is just to be normal. Try as I might, this time, although it offers glimpses of normality, it doesn’t offer me everything. I am restricted by my mobility, by my funds, by the schedule and my My Myeloma. I want everything. I am excited about the day when things get back to my new normal. EJ plus myeloma. I’ll make it work, I just cannot make it work right now.

I make plans in my head and these I look forward to. I look forward to a life where the main protagonist is not medicine. Medically, at this moment in time, I have nothing to worry about because nothing is happening. Now, if there is something or I perceive there to be something afoot that can effect my plans and my return to normality, I am devastated. I mean, snot everywhere devastated. Things that previously would have been a minor hindrance or detail, represent the end of something gigantic and dashed hopes. Predictably, this makes me susceptible to making a mountain out of a molehill.

I do not think I am creating mountains at his current moment, but two weeks ago I was. Whether it was a change to my job or my insecurities at what My Myeloma has done to my relationships, the effect is exaggerated in my mind because I have nothing else to focus on. More often than not, things are quickly resolved and become mere folly. I need to learn that the sooner I vocalise them the better. I need to not let things stew, but I do like a stew, just ask my slow cooker. It’s just difficult when there is nothing else…

Fortunately, the end of his limbo is nigh. The time when my transplant is my priority is looming and frankly, we cannot wait.

EJBs x

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Game Face

Every three weeks, for my Doctor’s appointment, I have to pull this little baby out the bag… My Game Face.

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It oozes positivity and confidence, sure.

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