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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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Missing Milestones

Once upon an early diagnosis, I loved nothing more than recognising, in celebration or in defeat, a myeloma milestone. Back then, in what feels like a lifetime ago, everything related to my illness was new, scary and needed to be thoroughly documented or looked forward to. All my progress was marked this way; the first day of treatment, the end of a first cycle of treatment, my first birthday with myeloma, the first year with myeloma, the first stem cell transplant, the first relapse, even the second relapse and so on and so on. And so on. Three years ago, it was so easy to identify these milestones.  It was how I got through my then treatment, which I saw as something temporary, something that could be considered fleeting in the grand old scheme of life. Using the word ‘exciting’ to describe these things is a little perverse, but let us not forget that I was once a little pervert. 

I entered a world so alien to me, that the click, click clanging of an MRI scanner was exciting. Every time something changed, developed or I was sent somewhere new, I considered myself to be getting somewhere closer to the cancer nirvana. I was getting closer to remission and a life free of drugs. With each box I marked as complete, I was one step closer to the impossible something. 

I was wrong.

I was a novice and the novice in me found everything to be noteworthy. Even if I did not make an actual note of it, I would have acknowledged it to myself and marvelled in the exploration. Until my relapse, and even in the months after my relapse, I could have told anybody who asked, how many doses of chemotherapy I had had, right down to the number of Velcade injections poked into my stomach compared to the number I had stabbed into my arm. If I thought really hard, I might have even be able to have worked out how many blood tests I had had. All of it is a blur to me now. This blog acts as my record.

Time has passed. Lots of time.

Contrary to what I may have said at the time, in the early days of My Myeloma, I found it to be extraordinary. There was something fascinating to be discovered in everything it made me do and everything I planned for. Now, My Myeloma is no longer extraordinary to me, it is ordinary. It is my day and it is my night, and it has been that way for so long, that a blood test, a biopsy, a doctor’s appointment and even a stem cell transplant feels run of the mill. Fatigue, sore hands, an aching back, unformed stools, vomiting and cancelled plans are not significant. It’s my equivalent of a daily commute to work and then the 9-5 itself. 

I am not pessimistic.  I no longer track my progress as religiously as I once did, nor am I making plans for the future. I do not, not make plans because I do not think I have a future. I do not make plans because I do not know what my future will look like. If I try to envisage where I’ll be in February, for example, I have a dream of where I want to be, but the picture is fuzzy at best. That’s just February, anything beyond that is unfathomable.  Most the time, the picture is blank. Over time, I have concluded that not thinking about it and not planning for anything, preserves my sanity and reduces the size of the box entitled ‘Dashed Hopes’. 

In my post transplant world, recovery is slow. Recovery is not only slow, it is the Unknown. I could not pinpoint what I am recovering from nor for. I think and plan in terms of no more than a week. Any more than that can feel torturous.  I wake up, hope that that day is not going to be one that features vomit and I try to do as much as I can whilst factoring in the planned activity I have for the remaining seven days. Nothing more. Nothing less. That is my existence. 

I try not to think about how long I have been waiting for things to change or how much longer I have to wait for things to change. If I allowed my brain to think about it as often as it tried to, I would be stark raving mad. Given how much I already converse by song with the dog, it do not need anymore assistance in the road to madness.

In my days ruled by myeloma, but where it is the last thing I try to think about, imagine my surprise a month ago when I was told that I was now 100 days post transplant. I was not surprised it had been 100 days already; I was surprised that I had forgotten to mark such a significant milestone. 

If somebody had asked me what Day 100 would be like prior to my Day 0, I would have said I and the Medically Trained People would have a much better indication about my medical future than we do at present. I was told that at Day 100, my care would transfer back to UCH. Most importantly, when I sat down and signed all those papers, I was told that I would be taken off the Ciclosporin at Day 100, and then we would know how much, if any, Graft vs Host Disease I would get. In the last 100 days, this milestone, or the significance of this milestone has changed.

I don’t have the immediate answers I wanted. Instead, at Day 104, the Medically Trained People came up with a six week plan to slowly reduce my Ciclosporin to zero. GVHD may occur within the four weeks after that. I know this is progress, but I am pretty certain the tortoise just overtook me. Instead of being free, I have at least another six weeks of waiting (and willing) myself to become ill.

There is always the chance that I will not become ill when I come off ghastly smelling drug. If I do not break out in an unsightly rash or poop out my insides, then all of this waiting and all the treatment could be for very little. Imagine the weight of that anticipation; it’s an anti climax that hits me every day. 

On Day 105, some 27 days ago, I returned to the place where everybody knows my name for a clinic appointment. Not just any clinic appointment. It was the first appointment at UCH since treatment began at St Bart’s. That too should have been a milestone. The problem? I felt like I had nothing to tell them. There were so many questions, but no answer. Although I loved the familiarity of it all; the more comfortable seats and the smiling faces, it failed to be the milestone I wanted it to be.  It failed because we are not in the position for them to be my primary care makers again. Instead, it highlighted how slow my progress is. I get to go back again in February, by which time, I hope the  picture is in HD. 

Fifteen days ago, when I started this blog, I received a letter. A very nice letter.  The letter was a summary of the clinic  appointment at UCH on Day 105 and contained the results from a bone marrow biopsy I had on Day 103.  I could type out what the letter said, but it is 2015, I can show you instead:
 
Paraprotein not detected’

‘NO evidence of myeloma’

A milestone if ever there was one. Seven words that three years ago would have been my cancer nirvana.   A fortnight ago, they were words that make me smile. They were  words that made my support network squeal and cry. For a moment, I paused and felt relief.

The relief only last so long. Those seven words need to come with a footnote. A footnote that is so lengthy that I was tempted to not tell anybody about them.  I wasn’t sure if I could stand their excitement. 

Experience has taught me that it can come back, that’s one thing. My Myeloma has not shown me anything else. I have never had results as good as this before, but I have been in remission and it came back. I am still in recovery from the stem cell transplants and that means I still feel weak and my days are a struggle. My weakness is like a permananet cloud. Not having a paraprotein level or signs of myeloma, does not magically make the damage already done to my body go away.  Finally, I want GVHD. I need it. For long term success, for a better quality of life, I want GVHD. I long for it. Such is my want, I have spent the last four weeks monitoring my body to such an extent that I have become a hypochonriac. I am part excited, part suspicious of every stool, itch or back pain. 

It may surprise you, given my tone, but I know I am incredibly lucky. I do know that. I have one sibling and  against the odds, she was a perfect 10 for me. We matched when so many do not. I have almost completed my fun packed 2015, and so far, my treatment has gone as well as it could have. In fact, with just 13 days left of the Ciclosporin, I know that it could not have gone any better. My energy is increasing, not as fast as I would like, but faster than the Medically Trained People expected. Even with my energy, there are many a milestone that have occurred but gone unnoticed since I walked out of that hospital all those months ago. 

Despite this, despite all of this, despite all of these positive developments, I am tired. I am tired of my ordinary life. I want so much to be able to celebrate and acknowledge the good, but I cannot. The clarity I need could not come soon enough. I want to fast forward to a life not ruled by medical milestones. I do not know if that is even possible for me and that is terrifying.  That said, if it can happen, if it does happen, it really would be a milestone worth celebrating. 

EJB X 

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The Montage

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

EJB x 

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Groundhog Day

Even though I have had cancer for, like, forever, I am still required to have the occasional bone marrow biopsy. Even though I have had cancer for, like, forever, the thought of a bone marrow biopsy fills me with dread and impending doom. If in fact, one can grammatically be full of impending doom. This morning, I woke up full of impending doom because I knew that at 09:00hrs, I would be forced into lying in a fetal position to allow for a bone marrow biopsy. I had been through an almost identical day before, for today was the Pre Transplant Tests Day. 

First things first, getting up early enough to be in the hospital before 09:00hrs, was not a pleasant experience.  I actually saw commuters, the nine to fivers. What a way to make a living. Before I had reached the hospital therefore, my day had started badly for I should have been woken up by Housemate and his dog and not by my alarm clock. Alarm clocks are for healthy people and not those who take a Diazapam before bedtime. I also knew that I faced a day of a biopsy, a kidney test known as a GFR Measurement, a Cardiac Scan and lots and lots of needles.  

The biopsy was just like the others before it, summed up with one simply word ‘painful’. This one however, had added blood and I ended up bleeding all over what looked like a puppy training pad, the waistband of my jeans and a little bit of the bed. I took a photograph of the latter to prove that I am not exaggerating.



Over time, I have learnt that the pain of having somebody remove a wee bit of bone and it’s juices from my body is lessened by having a friendly face to look at, that will talk to me whilst the dreaded deed is done. Today was no different and I had the addition of said person allowing me to squeeze his hand whilst I was pulling labour like faces and wincing. It all helped.

Following that little procedure, we endured a 85 minutes wait, as I waited for the next appointment, known as the GFR Measurement. Google tells me this stands for glomerular filtration rate, which is, apparently, ‘the best test to measure your level of kidney function and determine your level of kidney disease’. In practice, the test  was a right royal faff. It required my  companion and me to go back to the Insitutue of Nuclear Medicine five times over the course of the day to allow some Medically Trained People to take my blood after they had put some sort of potion into my body. Plus, two expertly administered cannulas in each arm. Due to a desire to protect my favourite vein, I opted to have the second cannula in my left hand, which meant I spent two hours sporting what looked like a mitt on my hand. Needless to say, doing up my trousers was quite troublesome. 

The first visit involved the potion being administered along with your bog standard flush. It looked very much like the photograph below.



I then had to wait for two hours before returning to the fifth floor of the magical tower that is University College Hospital, where a Medically Trained Person took my blood. I then returned an hour later when another MTP took my blood. I then returned an hour after that when another MTP took my blood. It was like Groundhog Day, with the added bonus of blood. My blood.



The whole thing was over by 16:15hrs, so let us all keep our fingers crossed that the results show a reasonable renal function. I really need something else to boast about.

Somewhere in the middle all of that nonsense, I had the cardiac test. I think this also required some sort of potion entering my body, but there was so much going into my body, there is a chance I missed it. These days, my motto has to be ‘Just Let Them Get On With It’. 

Even though I lost track of what was going into my body (an excuse for obesity if ever I have heard one), I did not miss having to lie on a flat mental bed whilst a machine took some expensive images of my heart for 15 minutes. I was also attached to an ECG machine. I must not forget that part if you are to get a clear picture of just how exhausting my day has been. I likened the machine itself to sticking one’s breasts in an upside down photocopier for laughs. Again, I documented the experience.





As is evident from the photographs, I found the experience quite sensual, what with the Velcro straps and all. It was sensual right up until the point when I had to sit up, when it became masochistic, well, if I enjoyed it. I did not. My back, along with the small hole in it, definitely did not enjoy the process of sitting up. I also did not enjoy the reminder that I still, after all this time and treatment, cannot lie on a flat mental surface and resurface without experiencing pain.

That was my day. Not all of it you understand, we need some secrets, but it pretty much covers what happened between the hours of 08:00 and 17:00. It was all too, too much for me and at 19:00hrs, I can confirm that I am in need and indeed, in my bed.

It would be most remiss of me not to mention that my day would have been nigh on impossible had I not had somebody to share the experience with me, hold my hand when I needed him to and who entertained me between blood samples. Indeed, his day, selflessly started before mine did, as he arrived at my house before my departure and accompanied home once it was all done. Even though I am tired and my back feels, as the the late and very great Mr Griffiths would say  like it has been kicked by a horse, I have a warm and somewhat fuzzy feeling in my stomach. I take this as both fondness and gratitude. Of course, it could just be because  we discovered the quiet solitude of Cancer Centre’s roof garden and not because my friend did something very nice for me. It’s hard to tell, I am full of unknown potions.





Now, let us all hope that this was worth it and in 15 days time, I’ll be on the verge of shitting my pants.

EJB x

Annex A: I ❤️ the NHS. You may be interested to know that during my day, I was treated by two nurses, four nursing assistants/technicians and saw two receptionists, not to mention the other people I saw and spoke to along the way. My tests also need to go somewhere once they are done and I there are several, faceless people behind the scenes including the people who will process my blood samples, contributing towards my wellbeing. What a service! It makes me quite proud. Also, those people in the labs, testing our bloods, always need a little shout out. 

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Crashed

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

EJB x

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

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Mashed

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

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

So, back to the downer that is Part I…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

EJB x

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Priorities – 2014

The following is a perfect example of my personal planning requirement.

My priority in 2013, which led to me rescheduling my stem cell harvest, appears to remain my priority in 2014.

Do you know how I know this? I give you exhibits A and B. I believe, they speak for themselves.

AThe Request

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BThe Response

20140218-104637.jpg

Boom! I will go to the ball.

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Acclimatisation

The month long hedonistic experience that is December is coming to an end. I used to love December. I loved the lead up to Christmas where at work you get to feel like you are breaking up for the holidays, and at night, if you were me or if you of my kind, you party, or at least go out, and you do that until you can go back to your Mum’s house and sleep. Last year, I could not do any of the pre Christmas fun I loved so much, instead, I got to go to the hospital and see the internal walls of my flat, until I was chauffeur driven to Mamma Jones’s house to sleep off the steroid crash. This year, my Christmas celebration coincided with my return to normality. It coincided with me being told that I was in remission, and thus, everything became all the more special. I had a drive to make things special. It was a 100 miles per hour down the motorway sort of drive, that saw me wanting to accelerate my recovery and enjoy a December like it was 2011. Of course, life is not that simple. Recovery does not work that way.

Christmas exaggerated my return to normality. In case you wondering, my return to normal, included returning to work, seeing as many friends as physically and financially possible, whilst telling myself that I was able to fit in my ongoing treatment, and more importantly, my ongoing need to rest. Throw Christmas into the mix, with my natural desire to see me loved ones, and embrace London life, and what you get is a disaster in waiting.

Even though I dared not believe it, and even though I have a reasonably firm head on my lesioned shoulders, I was naive in what I thought a myeloma remission meant, and what it means. I may have spent my post transplant world trying to get my head around what my life means now, but even with all that time, and all that thought, I dramatically underestimated just how difficult being in remission is. I am not alone in my naivety, for I am fairly certain that every member of my Support Network also suffered from the same ailment. Dare I say it, they may have caught the jubilant bug, more than I did and admitting that we were wrong, was not something I welcomed.

On a practical level, if I view myself as an object, a thing that does not come with emotions and a fear of an early grave, I know what needs to be done in order to acclimatise to the real world, the world that I can inhabit in My Myeloma body. I need, for example, to factor in at least 30 hours of extra down time a week than the normal 29 year old lady, at least at the moment. I need to not drink like a rugby player, that one is forever. I need to not put pressure on myself to match my former self. The reality does not look like that. December certainly did not look like that. I am full of emotions and I do fear an early grave, and all that sense and planning went out the window. I did not ease myself back into my world, I threw myself in and then some, to find that the world I thought was there, does not exist anymore.

There is so much to celebrate with remission. For me, my remission offers me some freedom to just be. I means a world free of constant medication. More importantly, a myeloma remission means more time. I imagined my remission to be a form of utopia, where I could just live each day as it came, and not dwell on what is going to come in my future. Maybe this will come, but if December taught me anything, it taught me that I am not there yet. Every day, I have to learn something new and cope with the trappings of my body. It is not easy. My remission does not offer total freedom. In returning to my life, I have found that there is less to celebrate than I imagined for all those months I was stuck in my bed, longing for this time to come. My day to day life now, is not a series of celebrations, I have said it before, my day to day life is a series of concessions and adaptations. As I have tried to live my life to the full, what I actually experienced was, that in living my day to day life, I got to experience for real, just how much I have lost with myeloma. Of course I have seen people whilst I have been sick, but until now, I never appreciated that although they were there with me, their lives did not stop for 16 months, their lives did not stall. Now, 16 months on, I see people who are settling down, getting married, having babies, partnering up, buying houses, shacking up, and I am not. It did not feel like that in. July 2012. I felt like an equal. I now feel like I am backwards and I am never going to truly get the chance to catch up. Myeloma did that.

Living a normal life is so hard. Correction, in December, I pretended like I could live a normal life, because that is what I felt like everybody around me was willing, and in that I include myself. I think I have a fairly good ‘can do’ attitude, where I just get on with it, but I cannot do it without stopping to mourn the life I could of had and I see others having around me. I have to acknowledge that it is hard and you do too. Treating me like the last 16 months did not happen, does not make it go away. It does not remove my pain and it does not heal the invisible wounds I fight with every time I get out of bed. In order for me to execute a normal day, I have to plan and I have to think more about every action in order to achieve it. I do not just get a bus for example. I have to think about how and when I am going to get a bus and where I am going to sit on that bus, and wherever my destination is on said bus, I have to think about how I am going to function on the other end and pray that I am going to be able to get back at the end of it all. I have to do this because I do not much like the alternative of staying in bed.

I am a simple person. I know how to live when I am in treatment and I know how to live like I do not have myeloma. I do not yet know how to face the big wide world with myeloma and without treatment. People tell me that I have to take it easy, and that I have to rest, but for me it is not that straightforward. I do not know how not to burn the candle on both ends when I am allowed to leave the compound. I learnt in December that I can no longer burn the candle. The lesson came with exhaustion, a missed Velcade injection, lots of white phlegm and antibiotics. That was then proceeded by a week of sleep. I say a week, it’s been a week and I am still sleepy.

The word ‘remission’ is not a magic switch. It does not make everything revert back to the way it was and there is no good to be found pretending that it is. My Big Sister told me that I had to snap out of my negativity and just get on with life, with living. The problem is, I think I like living too much. I want to enjoy everything I have missed, but only fools rush in, and I cannot be a fool. Just as I learnt how to deal with my various treatments I have to deal with this, for however long I have before I am in treatment again. My new world does not include going out every night, but I do not want it to involve not going out at all. For me, that is difficult. It may be a first world problem, but it one that I feel most acutely, so much so in fact, that it makes my forehead hurt, and last week, my stoic facade dropped, and for the first time in a long time, I openly admitted that this is hard. All, so, very, hard. It was not pretty. I think the drunken solitary howling at 02:00hrs in the morning may have been the highlight. I called it a myeloma breakdown. Oh well, like faeces, better out than in, I suppose.

EJB x

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Broken Record

Last week to my surprise and utter disappointment, I was fatigued. My fatigue was such that I feel like I have spent the last eight days in a haze and last Monday was just a moment ago. The hours pass too quickly for my drug altered mind. I knew on the Sunday before the Monday, that I was tired and I had probably, maybe, most definitely, pushed myself too much in the previous week. I had subsequently factored that into my Monday. Monday would be a rest day.

Monday was indeed a rest day, as was the Tuesday and Wednesday, and now we are back to one activity a day. To me those days last week, were more than rest days, they were days spent feeling ill barely moving. Scared that I was perpetuating this bastard, and worried that this sort of behaviour breeds more of this sort of behaviour, I forced myself to do some activity outside the compound. During each activity, I felt under the weather and experienced withdrawals from my bed. It took over. I spent the rest of the week doing the odd activity, but everything was a struggle. If I pushed myself in any activity, I paid for it after. If you feel like I have told you this before, it is because I have. I am a broken record.

I felt like I had regressed. My energy levels were reminiscent of me four weeks ago. I have been told that it will take a while for the fatigue to subside, but I expected my recovery to be made up of gradual improvements. I did not expect and nor do I want troughs in my peak.

The troughs are grossly unfair. I so much want to be able to improve. I can just about handle the speed as long as I am not reverse. I want to be able to tell people that I have done more with my day than the dishes. I want to have done more in the day than my dishes. I want to be able to go out for lunch and not follow it with a four hour lie down and that is on a good day. I do not want to be predictable. Two weeks ago, I felt like I was getting there. Last week, I did not. Today, I am still climbing out the trough.

Am I making it worse? I sincerely hope not, but then, if I were making it up, at least I would be better. I beat myself up over it and that is something I promised not to do. My crashes are not my definition of relaxation station, in case you thought I spent them in clouds that smell like lavender. They are fraught with guilt, frustration and waiting, and not sleep. I am a broken record. Napping would be preferable. Last week, I actually yearned for my post treatment nap, so popular during last season’s PADIMAC trial.

Most of all, I miss my brain function. I want to sit down and complete a task. I want to be able to recount more than what I have read in the column of shame. I want to follow every conversation I have. I feel like I am missing something great. Right now, there is no tangible achievement in my days and that makes things go terribly quickly. It a loss.

Not one to sit on my arse about this, I did seek some advice. The Macmillan booklet on the issue of drug induced fatigue recommends keeping a chart of the peaks and troughs to assist one in planning their days around them. I suggested that people did it so they could look back and identify improvements to give them hope. I for one struggle to recall how I was on any given day because the fatigue is not just about being tired, it is everything I said above and more. Memory lapses make me even more of a broken record. Anyway, I think the chart is a marvellous idea, I am just too goddamn tired to complete it.

I’m not where I was at the start of August, but then I am not where I was in May either. I want to be able to offer more. I want to change the record. I am bored of it and I am bored of people telling me it will get better.

Clearly, I need some work on my patience.

EJB x

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The Recovery Position

Take one hefty dose of fatigue, mixed that with an equal measure of impatience and what you end up with is a toxic amount of frustration.

I am very frustrated. I am the picture of horizontal frustration.

As with everything related to this procedure, the frustration grows from me not knowing how long this fatigue will take to get lost. I have not lowered my standards enough to say ‘do one’. I still have some brain cells working. At least I think I do. I know that the fatigue can last a long time. I also know that it might only last a few weeks. I know, that it is slightly different for everybody. What I do not know, and what nobody else knows either, is how long I am going to be bed bound for? How many more times am I going to wake up hungry, and then have to wait for three hours to build up the energy to serve myself a bowl of cereal? How many James Bond films am I going to start, but not finish? I am currently on five, by the way. One would say it is a blessing I have seen them all before. (Sean Connery in short shorts). When am I going to experience thirst again? More crucially, when am I going to find the energy to wash myself. It’s been four days now and my right armpit is pungent.* Seriously.

Home is much better than the hospital. I should get that point out there right now, in case anybody was mistaken and thought I wished to return to that sterile environment. I don’t. I think that when I returned home on Friday, I imagined, actually, hoped, would be more appropriate, that the fatigue, would mean me, being a little sleepy as I made my way between the rooms on the ground floor of the house, enjoying my various box sets, whilst people did things for me. Essentially, I fancied a summer holiday, of the type where I got to watch Independence Day on repeat and get obese. The reality, is far less exciting. The reality is that I cannot look after myself. Not only that, but the reality means that I cannot really focus on anything long enough to kill some time, and I am confined, predominantly, to my bed. The family do their best to get me up and about; on Saturday this led to me having a power nap in the back garden, on Sunday, I was forced to paint a boat. On Thursday, I am forcing myself to get dressed. I was going to do this before I found out I had to go and have a blood test.

Patience would go a long way right now. I have never had any. The nice ladies with the soothing voices in Macmillan say that I lack patience because I do not like losing control. I think they are correct.

If I was not me lying in this bed with the bedsheets I do not like, I would probably offer the pathetic, bald figure who looked something like me, some advice. I would say that I only had the Melphalan three weeks ago, and the transplant was 20 days ago, the Medically Trained People say this feeling is perfectly normal and let us not forget, I did get out of hospital earlier than expected. Everything is as it is expected to be and it’ll work itself out to a point where I can bake a cake. I would also add, because this part is important, to keep my head up; medicine may advance… I am wise of course, but logic isn’t really a friend of mine right now. Logic is not going to make me better nor is it going to make me feel better. Logic is not going to change the fact that My Myeloma means that I will inevitably feel this way again at some point in my future. Put that into your smiles and mindless banter and smoke it.

The good thing about my current situation is that, in spite of my impatience led frustration, I am actually doing what I have been told to do. I have let the fatigue in. It’s in my bed with me and that is where we live. I am allowing people to look after to me and I am not getting annoyed about it. I sleep when I need to sleep, which in the words of Vivian Ward, is pretty often. That doesn’t really work because she was talking about being trapped in a tower by a wicked queen. Mamma Jones is not wicked. Myeloma is.

I believe time will heal this current wound. I just wish I knew whether it was all going to be worth it. I think I know what the answer will be, but I have to be moving around again to feel it.

EJB x

* The shower comes this evening, thank goodness. Fortunately, I have lost a lot of body hair. I have to wait for there to be other bodies in the house and I do not think the dogs count.

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