Tag Archives: treatment

Trial By Error? 

It has been a mere 16 weeks since I started my trial, which now consists of fortnightly doses of Daratumamab, steroids and an antihistamine. 

I say ‘mere’ in an attempt to justify the fact that there have been no blogs for nearly that entire period. On the one hand, mere sums it up nicely. The weeks and the doses have flown by and I have nothing to show for it. Looking back on it now, I feel like hardly any time has passed at all. 

On the other hand, I am telling major porkies, for there have been several periods during the last 16 weeks where I would have described the trial as relentlessy slow,  frustrating and exhausting. Perhaps if I shared these feelings with you at the time, I would made things just that little bit easier for me. I could have had mini data dumps on you and off loaded. I was just too tired to put words to keypad.

There is another reason too, one which came into my head only yesterday. On this trial, I am always waiting for something. Waiting for a result, waiting for a clinic appointment, waiting to see how I feel, waiting for a development. Waiting for something that gives me some sort of conclusion to these short stories about my life that I have decided to share with you. The conclusions have not come.  Thus, this has made me feel like any recent story I had to tell about my treatment (or anything else for that matter) would be incomplete. It worried that it would be more of a whinge about how much of my life is about waiting for something to happen with my treatment. At times, it feels like I am waiting for everything. I do not wish to come across that way. I like to think I am realistically positive, but can that be interpreted through my writing when my brain feels less able than it was when I started it. 

I like a story with a beginning, middle and and end, featuring as little ambiguity as possible. Don’t get me wrong, I do not need to be spoon fed (drugs permitting) and I can withstand the test of endurance that is a modern day Terrence Malick film, or in fact any film that is described by a film critic as ‘meditative’ but personally, I prefer just a little bit more clarity. And my life of late has been left severely wanting in that area.
So, here I am. There is no end to this story. All I can say to you is that I am not dead. Not yet. To those of you who were concerned that I may have passed to the other side, I thank you for thinking of me and for worrying about my absence. I am back. It does seem like a lot is going on at the moment, so I will have many a half finished tale to tell you. Fingers crossed.

Yesterday, the 17 August, marked my five year cancer anniversary. It was a loaded day. There is so much to remember about this period, and Daratumamab accounts for just 5% of the five years. You would think that I would know by now that I rarely get an end to my stories. Only occasionally have I been able to announce an end; the end of a chapter, or an end of volume have been my particular favourites. In reality, I know I should just face the facts that my life from now is ongoing, until it stops. And thus, I have no excuse to not share what is going on with you. You are, after all my cancer diary. 

Getting back to The Daratumamab, the one thing I do know, is that it has not been easy nor straight forward. Has any of my treatments? 

I flew into this treatment after a week’s radiotherapy and two weeks after I had received some very bad news. I was shell shocked and exhausted. I started the treated not knowing what it was and without fully understanding what the aim of the treatment is. I still don’t know and this is because every time it is explained to me, my painkillers kick in and my brain floats off into NeverNever Land.  I just know that being on the trial far outweighs the alternative of not, and for now, that’s okay with me. 

If I have learnt anything important since I started on the Daratumamab, besides from how to pronounce it, it’s that being on the trial is better than not being on it. It may be lonely, my body may be being used as a corporate guinea pig, but I don’t care. I am happy I am on the trial. Scratch that, I am grateful to be on the trial and everthing it encompasses far outweighs the negatives of being on a trial. The negatives by the way, are several, but in the grand scheme of my life, I can live with them. 

It would be really nice if I were now to talk you through each of my treatments. To build up a narrative, and to get you to feel even a little bit of what I feel every time I enter St Bartholomew’s Hospital and the times I am not there, lying in my bed thinking about it. That’s an awful lot of visits to go through and my short term memory is highly questionable, so I am not going to do that. Maybe I will one day. Maybe I will today. Right now however, I’m going to jump straight into what I assume you want to know and that is, how am I doing? 

How am I doing? 

Medically, I had to wait a long time for that to be answered. Two weeks ago, I did have an answer, but as of yesterday, I am right back into the Land of Worry, led by the President of Anxiety with her Cabinet of the Unknown. 

I did not have a clinic appointment for the first two cycles, which for cyber attack reasons, was nine weeks. Before that, I faithfully went in for my treatment each week, without knowing if the trial was doing anything. I went through various emotions during this period and in the end, I had decided that I would prefer to not have clinic appointments and only be informed if something bad was happening. Unfortunately, I didn’t actually tell any Medically Trained People this, so when I was telephoned on a Friday afternoon to say that I had to see The Big Prof on the following Monday morning, great panic ensued. Why now, I thought? Why with the greatest of haste? 

In my panic, I ignored the fact that the appointment marked the end of my weekly doses and the beginning of a new cycle. I also ignored the fact that I had not seen The Big Prof since I had walked into his office eleven weeks earlier and he made a space for me on his trial. I irrationally thought the worst.

This was sometime around the beginning of June and I can confirm that it was not the end. My paraprotein had remained stable throughout the nine weeks of treatment; it had not fallen and it had not risen. As a layman, I would have liked to hear that my paraprotein had gone down, but The Big Prof said he was happy with my results and signed me up for another cycle. I was to return to see him at the end of the next cycle, four weeks later. Apparently, that’s how frequently I should have been seeing him; at the end of each cycle. 

Something happened between my first clinic appointment and the second appointment. Well, a few things. I went on holiday, which meant having a month’s break between treatment and more importantly, pain returned to my body. That’s wrong too, I am not sure why I am unable to say what I mean on the first attempt. Pain is a multiple, but mostly managed daily experience. I do not have a day without pain. The word I omitted was ‘new’. New pain returned to my body. I have only experienced ‘new pain’ in the past when my disease was increasing. So, in this circumstance, I did what any sensible person would do who was desperate to go on holiday. I kept it a secret. I kept it a secret for two whole weeks before I blurted it out to Mamma Jones before we went on our holiday. I do not think I could have held it in any longer without inflicting serious mental health issues upon myself. 

Three to four weeks later, it was clinic time once again and if I thought I had been nervous at the start of June, I do not know what words could be used to describe what I was feeling on 2 August. It was not pretty. I had roped Mamma Jones into this one. I knew I could not do it alone and not surprisingly, my dear Mamma used up a day’s annual leave to come and support her baby during her appointment. I’m not ashamed to admit when I need my Mamma and she is always willing to oblige. I don’t want to gloat, but she does it so well. She even managed to keep me calm during the two hour wait in the most uncomfortable of uncomfortable waiting areas with her small talk and usually, small talk is not her forte. 

I had somehow managed to avoid thinking about it on holiday, despite increasingly bad pains, which just so happened to coincide with too much physical exertion. My holiday is another blog, but for this story you just need to know that I pushed my body to it’s limits, and beyond what I have medically been told I can do, so I could enjoy myself.  Experience it properly. By the end of the holiday, I could no longer put on my own shoes and socks. It was all worth it of course. The new pain, however in my right rib cage, once the excitement of the holiday was over, started to cause more pain than just the physical pain. 

So, having self diagnosed myself, we walked into the Medically Trained Person’s office to be told that everything was okay. I was shocked. My paraprotein still remained stable and despite putting on a bit of weight, I was clinically well. Mamma Jones and I left, I apologised to her for having to lose a day’s annual leave over nothing and I breathed a massive sigh of relief. Or four.

It was not long however, maybe even in a matter of hours, that I realised that I was predestined to have these feelings of anxiety repeated in the lead up to all future clinic appointments. I personally feel like I am hanging on to this trial by a thread, with what happens to me, being completely out of my control. When the bad thoughts creep into my head, I do quickly try and grasp on to a more positive spin. I want to stay on to the trail. I want to stay on and experince more of what this mortal coil (the right term for the state of the world at the moment) has to offer. I would say that in the circumstances, I am as positive as I can be. I’m realistic with it too, so when I feel something new in my body or I experience something that is not quite right, I am bound to worry. I am concerned that there are times that I can be too negative. I have discussed my behaviour with my counsellor and she says that pre clinic anxiety is perfectly normal and that acknowledging my fears is much healthier than behaving like I do not have cancer and I am not where I am in the long line of myeloma treatment.  I’ll take her diagnosis. 

It does feel natural now to worry about my success on the trial, given there isn’t that much out there, drug wise available to me. I can understand why I never truly feel comfortable too. Between appointments, I try to block as much of this out as possible. In my free time, I make sure I do as much as my body enables and that definitely goes someway to refill my faithful old ‘good cylinder’. Since my treatment moved to fortnightly, I have fully embraced getting a week back of my life, and I use it productively to live and not wallow. I have also lost the guilt I felt whilst my treatment was weekly, that I was not living enough. I was just too bloody tires 

In the last few weeks of the weekly doses, I really struggled. During the first few weeks, I had calculated that with treatment including steroids on a Thursday, steroids at home on a Friday and Saturday, followed by the inevitable crash on at least Saturday if not Sunday (and Monday), I was afforded two to three good days before I was back having my bloods done on a Wednesday morning. Then, everything started again on the Thursday. That two-three ‘good days’, days in which I was able to do something like a single trip to the cinema or a trip to the pub were invaluable but fleeting. A ‘good day’ did not equate to A full day. 

Gradually, as the weeks progressed, the number of ‘good days’ decreased and I longed for the fortnightly treatment. I had a week off treatment because my hospital was a victim of the NHS cyber attack, or whatever you wish to call it; I am no IT expert.  That week gave me a taste of what was achievable in a week off, and it felt like  freedom. Realistically, when you count the days I had appointments at UCLH too, I was down to one ‘good day’ by this point. As much as I enjoyed that week’s break, it made the remaining weeks feel like torture. Thank goodness for my Support Network.

I started receiving the Daratumamab fortnightly on the 14 June. To date, I have completed one and a half cycles, which equates to four doses. Technically, I do not require any more doses in this cycle but the next one, will not (hopefully) start for another 13 days. 

All of that nearly brings me up to date. Nearly. Yesterday was treatment day and it was five years and three days since I was admitted to another hospital with an elevated calcium level in my blood, leading to my diagnosis of multiple myeloma on 17 August 2012. Yesterday, I was told that I once again had an elevated calcium level. I am sure there are many medical reasons for this result, but to me, it answered my questions of why I have been experiencing the ‘new pain’, memories of five years ago fresh in my mind.  

The Medically Trained People I saw yesterday were ward based, which means they are not responsible for my overall treatment, if they know anything about my overall treatment at all. They approached the subject part calmly and part like a headless chickens.
The news of a high calcium level was met with my tears. The tears may not have come were it not for the anniversary, but I doubt it. I am so aware of failure that I probably would have blubbered like a baby regardless of the date or regardless of the cold way it was broken to me. “Are you on any supplements?” probably was not the best way to tell me, but that’s what happened so I just have to move on and acknowledge that the Medically Trained People working on St Bart’s daycare are extremely busy. 

As I wrote a few paragraphs ago, the result would answer why I had been experiencing the ‘new pain’ and generally why I have recently been feeling a little ‘off’. I asked  for my paraprotein result and I was told by the doctor that it had risen by a tiny amount. ‘Tiny’ was emphasised by a hand gesture and a closed eye. I asked for the actual figure and it had risen by six based on the bloods taken on 2 August. Is an increase of six tiny? I would have said it was, but then, I am not medically trained. 

So, where does this leave me now, does this story have an ending? In a word, or in four words, I do not know. Yesterday it meant receiving two large bags of fluids, which has left me peeing practically non-stop since. In terms of my long term health?  I do know is still my answer. I will have to wait for my next clinic appointment on 30 August. A clinic appointment where they will thankfully not be working on month old results. I know it will be a clinic appointment where my anxiety levels will once again go sky high. I will try and live next week, but I doubt the next clinic appointment will be far from my mind. 

Last week, I told various people in an attempt to justify my feelings about my treatment and life in general, that I lived month by month. I strongly, most adamantly believe this to be true. It’s like waiting for scraps, accept just with higher consequences…

So, this blog has now come to an end.  Is there an ending? I hope it is not the start of one. 

EJB x

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A Lesson in British Decorum

Please not I accidentally published this blog early because I have limited control over my fingers; this is the final version (unless I reread it during a bout of insomnia and decide to correct my typing errors).

University College London Hospital acted with the greatest of haste following my MRI and all round bad results. Not only did they make sure I was referred to Bart’s within days of our meeting, they also referred me to their Radiotherapy Department. I am not sure of the particulars or what happened behind the scenes, but I do know that I saw my Medically Trained People on Thursday 30 March and I was informed on Monday 3 April that I had an appointment at the Radiotherapy clinic on Thursday 6 at midday. Not only did I have an appointment at midday, but I also had an appointment at 14.30 to complete my pre treatment measurements. The treatment itself was to commence on Friday 7 April. 

Now, I know I just threw a lot of dates at you. In a nutshell, in order to be left opened mouthed with administrative awe, you just need to know that within the week of receiving and telling me about my MRI results, the hospital had scheduled in my treatment, which was to start a mere eight days later. Things were moving fast. Need I remind you, that this was all planned in the same week I visited St Bart’s to discuss and consent to the clinical trial. The start date of which, was dependent on my radiotherapy. All of this was also within a week of being told that I had stopped responding fast enough to traditional treatments. What a mouthful.
It was to my benefit that things were moving so fast. Mercifully, it left me with little time to dwell.
Not having the time to stop meant that I was able to get myself into what I call ‘Game Mode’, without stepping into the usual self pitying pitfalls. I walked in to the Place Where A Lot of People Know My Name on Thursday 6 April, ready to go. My head was high and my lipstick was on. I know that things would have happened around me even if I was not ready to go. Mentally however, it was important to me that I felt ready for the various treatments that were soon to be thrown at me, and there was a lot to be thrown at me. After feeling like I had been hit over the head with a Le Creuset griddle pan for a week, and allowing myself to cry for most of that week, the game was on. I was ready go. 

So, after all that internal fighting talk, Thursday arrived and it was time to sit down with an unknown Medically Trained Person. This was not my first time having radiotherapy; it was my third. I had previously had a one off session on my right hip in the October of 2012, and a five day session on my L1-L5 to remove a mass in August 2014. The purpose of my previous treatments, were the same as this current treatment, and that was to manage and reduce my pain. 

Previously, the Radiotherapy Department came along and zapped said pains away; and it is for that reason that I was absolutely desperate to have this treatment.  It shone through. My pain was worsening day by day. Even before I walked through the door into the Medically Trained Person’s office, my desperation was palpable.

During my appointment I was informed that instead of the treating just the two areas that had been ruling my life, they would be treating three. The main area requiring treatment, the area causing the majority of my pain was a ‘mass’ pressing on my C5-T5. That’s my spine by the way for anybody who thought I didn’t have a back bone.  I think ‘mass’ is a nice way of saying something else, but I did not enquire further. To treat said ‘mass’, I would be receiving five zaps over five almost consecutive days. A weekend got in the way of it being truly consecutive. Anyway, so far, so good. I saw the MRI image of the ‘mass’ and I thought to myself ‘yep, that’ll do it’ as I hunched over once again and grimaced in unbearable pain, wondering if I would ever have full sensation in my left hand again.

Also requiring treatment was my left pelvis, which I knew about, but from that appointment forward, I would only be referring to it as my ileum. Simply because ileum is a great word. My ileum would be treated with a one off blast of radiation. The third area to be treated, and also with a one off blast, was my T10-L1. The doctor said that there was ‘something left over from last time’. Again, despite being in my Game Mode, I chose not to ask any further questions about this. I trust the Medically Trained People, and I was happy to leave all the science and decision making to them.  I might not have known about this particular problem, but what harm can a one off blast of radiation do? The 2% chance of a secondary cancer is hardly an issue for me now.

Such was my desire for my pain to be relieved, if they were offering more, who was I to decline it? So, I fast forwarded through the list of side effects and signed yet another yellow consent form. 

Downtown Abbey has a lot to answer for. Stereotypically, British people are believed to be well mannered. We also apologise a lot but that doesn’t fit into the title and narrative of this blog. On a personal note, if I was not well mannered, I would incur the wrath of Mamma Jones. Thus, I made sure that prior to my departure that I thanked the Doctor not only for seeing me, but for seeing me so quickly and in advance of making the pain disappear. It was not a one off thank you, it was an over excited, cannot believe my luck, repetive thank you.  I might have even squeaked. It was the sort of thank you that could easily be described as embarrassing. I embarrassed myself and probably the doctor. I did not care. I do not have the brain power at the moment to adequately express how much I needed and wanted the radiotherapy without simply repeating myself; I really needed this treatment. 

Next up, in this seemingly never ending blog, was the pre-treatment measurements. Now, I am going to assume that the majority of you have not frequented or required radiotherapy at UCLH. It’s a different world to Huntley Street’s cancer centre. It’s in the windowless basement of the main hospital and every member of staff speaks in soft dulcet tones, to match the soft colour tones of the walls. They also introduced themselves to me at such a rate that remembering their faces, let alone their names was next to impossible. 

There is one word I would use to describe the staff I encountered that afternoon and that word is ‘nice’. Everybody was so nice. I said as much to them. They were all the epitome of nice.

To be measured for the radioactive zaps, these particular Medically Trained People needed to access my hips, chest and back. In order to access these places, I needed to remove my clothes and it is this circumstance in which I encountered British manners at their most uncomfortable. The episode went a little something like this:

Technician: [soft dulcet tone] Now Emma, I just need you to remove you top and your jewellery. 

Me: Okay.

Technician: Actually, can you take your bra off as well? We’ll leave you alone for privacy.

Me: No problem, do you need me to take anything else off? I’ve had a lot of medical procedures so it doesn’t bother me.

Technician: Um [looks at my jeans] can you take your trousers off as well? You can keep your underwear on. We’ll give you a gown but you’ll need to keep it undone at the back.

Me: Sure, are you sure you don’t need me to take my knickers off? I truly don’t mind. After you have to have your mother take you to the toilet and bathe you at the age of 28, nothing really phases you. Well, it doesn’t phase me.

Technician: No, knickers are fine. [The three people working on me then left the room to give me the privacy they promised, something that contradicts what follows]

Me: [Now dressed in an undone medical gown, but still wearing my necklaces, which I could not remove myself due to my pain] I’m done.

[The three female technicians then come out of their office, one helps me to take off my necklaces and they ask me to lie down on the measurement contraption]


And so, I did what I was told. I lay on my back with the gown flapping at either side of me. It was not comfortable. The three technicians started to work over me and described everything they were doing to me in their dulcet tones. They kindly explained that they needed to look at my body to complete the measurements. My naked body.

As the radiotherapy was going to be on my neck, lower back and left pelvis, this translated to looking at my chest, hips and the top of my lady garden. Yes, I wrote lady garden. For information, when I relayed this story to my nieces, I referred to that area as ‘my peach’. 

For my chest, I had to remove my arms from the gown which was then pulled down to reveal my less than pert breasts. After some talking and looking, they drew a cross (I found this out afterwards) on the area known as, if I were wearing my bra and standing up, my cleavage. For my lower back, they were able to use the previous tattoos. 

Now, here comes the best bit. To access the necessary area of my lady garden, they very gently and apologetically pulled down my M&S black cotton briefs so they were resting just below my buttocks, and then covered my exposed front with a piece of hospital issue blue tissue. The process continued to be narrated by those dulcet tones. The purpose of the blue tissue was to protect my modesty. 

So there I was, lying on the machine all but naked were it not for the hospital gown acting as a sheet, my pants hanging below my bottom, and a piece of hospital issue blue paper towel covering my genitals when one of the technicians used something wet, I assumed it was an anticeptic wipe, to clean the top of my lady garden. It was at this point that I started to hot flush. The area was inspected closely, and the tattoo I had there in 2012, unlike the ones on my hips had faded, thus requiring another tattoo. 

After I had been through the machine where I had admired some animal stickers stuck to the top of the machine for children’s entertainment, the ladies returned to the room. This time round, I received one and a half new radiotherapy tattoos. I got a brand new one on my cleavage and the half belongs to the touched up one on my not-to-be-seen. Once that was done, I was done. I just needed to get up off the machine, which in my case, is always easier said than done. 

I cannot get up, after lying flat on such a hard flat surface by myself. It has been four years and eight months and I still cannot do it. So, I very politely asked for assistance, which was willingly given. As I sat up, flanked either side by two strangers, the undone gown still acting as a blanket fell off exposing my breasts and my bare bottom. It was too late to protect my bottom, but I was able to cover what I unaffectionally call my Saggy Maggies by putting my arms through the sleeves of the gown. As I put my legs down and stood up, the blue paper towel that had been protecting my lady bits fell to the floor, and my pants defied gravity and stayed up despite being rolled around my upper thighs. Once up, the technicians once again left the room so I could get dressed in private. 

In private? Really?

As I said early on in this tale, I am comfortable with my body enough to expose whatever parts of it the Medically Trained People need to see. I am not embarrassed by it. I understand it is something that needs to be done, and in the grand scheme of things that I have had to do since my diagnosis, getting naked does not register as remotely noteworthy. 

I did, however find my experience on that Tuesday as noteworthy. In their attempts to be polite, to protect my modesty and to make me feel comfortable, the technicians achieved the opposite. Fortunately, I can see the funny side of standing all but naked except for some rolled down knickers and an undone hospital gown. It just seems strange that their approach to nudity, a very British, hush-hush approach to nudity, made me feel more exposed than if I had removed all of my clothes in the first instance. 

It was an approach that ran through the entire department, despite my attempts to be visibly carefree when it came to disrobing. When I attended for my actual treatment, the room was equipped with a modesty screen for changing, which I chose not to use for anything but storing my belongings and hiding my difficulty in doing up my bra due to my failing arm. And yet, I still went through the same convoluted format. I was not asked to remove all my clothes right away, I was asked to remove them one by one. When it came to zapping my ileum, once again, I was asked to keep my knickers on only for them to be rolled down, at which point my nether regions became reacquainted with a piece of the hospital issue blue paper towel. 

I found this episode to be embarrassing too, not because I was naked but because I had a hot flush during the procedure. I hot flush all the time, but hot flushing whilst somebody I do not know is helping me off a flat surface wearing nothing but pants  rolled down to my thighs with a hospital gown round my midriff is an uncomfortable experience. It is exceptionally uncomfortable when several seconds after standing, a damp piece of hospital issue blue paper towel falls to the floor. At least I made my nieces laugh. And my friends.

And with that, this particular lesson ends.

EJB x


P.S. I made Housemate take a picture of my cleavage tattoo. It probably made him feel uncomfortable, but as you know, I’m down with my naked form. Here it is, nearly naked. It’s only fair that I share it.

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10 Hours In London

Following my latest Bad News Day, I’m not sure if we can classify it as the Ultimate Bad News Day, but after whatever a fortnight ago was, things started to happen very quickly. Last Friday evening, when I had a chance to stop, I reflected that I could not believe so much had happened in a simple space of a week. As you can assume, it was a riveting conversation. A lot happened that week, but for this blog, I am only going to tell you about what happened on Monday 3 April. Firstly, it means you’ll have to read the following blogs and secondly, I enjoy the WordPress alerts that say ‘your stats are booming’. Well done, all 100 of you. I deserve more than 100 of you, but again, that’s not the purpose of this blog.

Mamma Jones and I departed Peterborough on the 10.08 train that day for an appointment at St Bartholomew’s Hospital at midday. At this point in time, I was not entirely sure why I was going to Bart’s. The last I heard was that I may have got into a trial at the hospital and I was going there to talk about it. Initially, I had thought that this appointment would take place a week later, but the hospital wanted me in as soon as possible and when you are dealing in possible clinical trial spaces, I was willing to do whatever the hospital wanted me to do. Even if that meant getting up early and getting a train to London, when all I wanted to do was rest my aching bones. 

The familiarity with returning to St Bart’s was overwhelming. The clinic I was attending started at 9am and my appointment was for midday. On a very practical level, this meant that waiting would be required as the clinic would have had three whole hours to run late prior to my arrival. 

The waiting room in the East Wing had gone unchanged. I don’t know why I was expecting it to have changed. I lie actually, in my absence they had upgraded from lukewarm jugs of water to a standalone water cooler that dispensed more lukewarm water. The room itself, still holds far too much heat and there are still insufficient seats to accommodate the number of people who attend that clinic. People seem to sit wherever they can find a ledge. It looks so untidy, with patients sat incredibly close together on plastic seats, facing various directions whilst other patients sit on the seats fashioned from oversized window ledges that are too deep to be sat on with any type of decorum. Wheelchair uses find space next to the window seats, but there is no designated spaces that would indicate an area where a wheelchair user has stopped on purpose rather than just finding themselves next to a plug in heater in the middle of a corridor. Needless to say, it is an environment that feels cramped and overbearing. My previous visit to Bart’s had been about a year before. Desperately trying not to moan, the oppressive nature of the room, and my imagined but fierce belief that plus ones would never give up seat to a young myeloma sufferer, immediately put me in a bad mood. 

I tried to read, I thought perhaps reading would make the wait seem more bearable. Not that I knew what I was waiting for. Reading proved to be impossible because that room carries sound that I could not escape from. Any conversation that did not originate from my lips on that day, was pure and utter, superficial nonsense. My attempts to read just encouraged me to look at the other patients and declare them evil for interrupting my novel. Housemate dropped by briefly during this time to deliver a much needed packet of Refreshers. They helped. But we were still waiting. 

Maybe I was being too dramatic in wondering why we had been summoned there. Logically, I knew I was there to discuss the trial and hopefully get on to said trial. I know what my problem was, I didn’t want to get in to see the Medically Trained Person only to be told that it was all a gigantic mistake, that I wasn’t on the trial and that I must have misunderstood something four days previously. This trial literally is my chance to prolong my life. I did not want to hear about any mistakes. . 

Irrational concerns about my hopes being dashed after nearly five years of having myeloma, are not so irrational. 

I was eventually called through at 1.25. It was time. Time for what though? We did not have a clue. 


Like I said, we did not know what to expect. Was I going to have to pass a number of tests? Was there a written word exam nobody told me about? Would the Medically Trained Person not put me on his trail if I started to have a hot flush and as a result of hot flush leave a damp mark on his chair? I just did not know. I was not privy to any of the discussions that led me to Bart’s. 

So, up the river without a paddle, I walked through the double doors, followed by another set of double doors until I reached a single door and knocked. The Medically Trained Professional opened that door and  in we went. 

Inside his office, ready to greet us was a Medically Trained Person I know well. He, my doctor throughout my last transplant, was smilin, actually smiling at me which made a refreshing change from the previous week’s tears. I am a simple woman and I appreciated the familiarity. I’m surprised he did not automatically call me ‘Em’, which had had started to do when I was last under his care. 

I would categorise what followed as informal. We did not have an in depth chat about the clinical trial (Daratumumab). I was told that there was around a 30% chance of it working. I reasoned that that 30% was better than trying nothing at all. The word ‘antibody’ was mentioned a few times but not enough that I actually understood why. Then, probably within five minutes of us entering, the Medically Trained Person signed a white piece of paper and said that was his consent for the trial. 

Could it be that without any blood tests, biopsies or an explanation, I was on the trial? Apparently so. Even now, I loathe to jinx it.

And with that, I think I expressed enormous gratitude, and then we were ushered out of the office with a few sheets of stapled white A4 paper containing a very important signature, and that was it. Well, it wasn’t quite it, we still had to go and see the trial nurse, but that was it for our time with the doctor. Clutching the consent form  and looking at my mother in disbelief, we made our way up to the seventh floor of the main building, otherwise known as the cancer centre. 

St Bart’s cancer centre, despite the view was just as foul as I remember. We did not get past the waiting area on our visit but that area was filthy. There was rubbish everywhere and unhappy people sitting amongst yet more plastic chairs waiting to be called through. I do not know if I imagined it, but I am sure there was actual rubbish littering the waiting area and mug rings decorating the tables. I did not imagine that the adjoining toilet I used, was soiled with stains all over the floor and toilet seat. How does this happen by 2pm in the afternoon? I know that people are sick, but really? What does it say when patients don’t respect their treatment area enough to keep it clean? I’m not going to answer that because I am very thankful to be transferring to Bart’s and I think it is a wonderful Hospital. 

This s a blog about how much I love St Bartholomew’s Hospital and not one where I highlight all of it’s faults. I really do love St Bart’s and I am pleased about being transferred there. Honest. Honestly. 

Amongst the debris, Mamma Jones and I read through the literature I had been given and then I signed my life away, consenting to everything they asked me to consent to. A skim read would be the correct description of what I did. I was beginning to get tired. Since I was diagnosed with Myeloma, I have consented to many things and I can confirm that there was nothing exceptional about this form. Let’s hope the subject matter proves to be exceptional, but the form itself? A form is a form is a form. 

After a few minutes, we met the Clinical Trial Nurse. Not that I am picky in anyway nor does she have massive metaphorical shoes to fill when it comes to making me feel comfortable with my care, but I approved. We discussed the practicalities of the trial and I handed over the stapled bits of A4. 

I was then weighed (dropping a full half kilogram from my morning’ weigh in), measured and my blood was taken. And that was it. I was sent home. Practicalities, like the start date of the trial were to be decided once my dates for radiotherapy had been confirmed.

Was that it? Was that all that was needed to get me onto a trial that has a 30% chance of prolonging my life? I do not not know what I expected. I did not even get the chance to express my gratitude to such an extent that it made everybody feel uncomfortable. I didn’t learn about the ins and outs of the trial. I just stipulated that I did not want a semi-permanent line and said I still wanted to be able to go on holiday. 

It’s now over a week since that appointment and I still do not want to do anything endanger my place on the trial. As the rest of our correspondence has been done over the phone or by email, I am afraid that they are going to discover something catastrophic. It doesn’t even need to be catastrophic, it could be something perfectly innocent that could effect my place on the trial. This week I almost took some extra steroids, and even those could have impacted on the trial. 

It cannot be taken away.

On the subject of steroids, no tale of our day in London would be fully complete if I did not tell you what happened after we left the hospital. By 3.45pm, I was absolutely ravenous. By that point I had been on a high dose of steroids for four days, we had missed lunch and I really was ravenous. Well, I was tired first, hungry second but I knew that if we fed the hunger, Mamma Jones would be accompanied by a much nicer me on our journey home. 

We went to a restaurant and I am most thankful that the restaurant was quiet, for I sat down and ate a starter of calamari followed by half a chicken and chips. Once I was finished with my chicken, I finished my mother’s. Mamma Jones’s chicken was not included in my half chicken tally. I couldn’t stop. The least said about this meal the better, but in short, I could not stop eating. Afterwards, we travelled to Kings Cross station where I indulged in yet another banana milkshake. Then, and there was a then, when we eventually arrived home at approximately 8.30pm, I had a bowl of porridge with Jersey milk. Steroids

Steroids are responsible for a lot.

Straight after I ate my bowl of porridge I fell asleep and I stayed in bed for the next 36 hours. Our 10 hours in London, wiped me out. I know that it is understandable, but I was still surprised the following day to find myself incapable of getting out of bed. The exertion was worth it. Meeting with the staff at Bart’s and albeit briefly discussing the next steps made me feel like things were moving quickly and they were moving in the right direction. I know that the odds of this working are extremely low, but I feel positive about it. Well, I feel ready for my treatment to start and I am not going into it thinking it’s going to fail…So, yes, that’s something. 

I cannot quite believe that I am on the trial. I do not know how these things work, but I know that in terms of criteria and timings, I am lucky. I know that Myeloma patients don’t get ‘lucky’, I’m fortuitous. 

I know (because people have told me, not. because I have done any of my own research) that it is incredibly difficult to get on any dartumumab trial in the UK and it is for this reason that I will not let myself fully believe that I am on the trial. I might have signed the papers. I might have  completed the pre tests (I haven’t actually completed the pre tests, I still need to do a 24 hour urine sample). I might have been told that I am on the trial. I just cannot, until I watch a very slow infusion enter my body this Wednesday believe that I am really on the trial. At that point, I might doing a celebratory fist clench and feeling a tiny bit lucky. 

EJB x

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It’s Only Da ‘Roids

steroidnoun BIOCHEMISTRY 

Any large class of organic compounds with a characteristic molecular structure containing four rings of carbon atoms (three six-membered and one five). They include many hormones, alkaloids and vitamins.

Say what?

The above, I imagine after choosing a life of easy culture and civil service instead of biochemistry, is a fairly crude definition of a steroid. I do not know the molecular compounds of steroids. Why would I? Nor do I know the specifics of the steroid I have come to loathe called Dexamethasone. All I know is that above description of a steroid fails, quite dramatically to encompass the sheer power of a drug I have been taking for nearly five years and for that whole period of time has be routinely kicking me in the guts. My quick Google search makes it sound so innocent. I know some steroids are innocent, but ever since I watched an episode of California Dreamin’ where Tiffany became addicted to steroids to enhance her volleyball performance, I have known there are something to be wary of. And wart I have been. 

Of Dexamethasone, the Internet describes it as a medicine this time and as ‘a synthetic drug of corticosteroids type, used especially as an anti-inflammatory agent’. I’m not going to begin to understand what that means, all I would say, is that for the moral of our current story, remember it’s use as an ‘anti-inflammatory agent’. 

Whilst we are on the subject of uses, I do not know, as this blog should clearly indicate, why I take this drug so routinely. I think I understand why I am talking it now, but why Dexamethasone supports pretty much all the myeloma treatment I have ever been on, well, that reason is anybody’s time to research. In light of my ignorance, I thought the least I could do was to investigate the list of known side effects, for it is those where I feel I know the drug as well as I need to. 

According to Wikipedia the side effects of taking this dreamboat can include acne, insnomnia, vertigo, increased appetite, weight gain, impaired skin healing, depression, euphoria, hypertension, increased risk of infection, raised intraocular pressure, vomiting, dsyspepsia, confusion, amnesia, irritability, nausea, malaise, headaches and cataract. These are the common side effects.  If you are bored, research further but I think I have copied enough to get my point across. They do a lot and they are unpleasant. 

Steroids are hard on the body. They have always been hard on my body. In fact, such has been my response to steroids that for the last two treatments I have had, I have been allowed to take a lower than the recommended dose so that I could have something that resembles a normal human’s week at the end of it. I would rather take any other of my routine medications, even the one that gave me nightmares. 

Wikipedia’s list failed to list my biggest problem with the stuff and that’s the fatigue. The inevitable crash after the fall. And it was inevitable. I used to prefer taking my month’s steroids over four back to back days as opposed to weekly, just so I did not have to deal with them as much. I didn’t always succeed, but that was my goal. Get them out of the way as soon as humanly possible, whilst still adhering to the will of the Medically Trained People.

Why on earth are you telling us all of this, Emma? 

Patience. Something I lack in abundance, but bear with me. There is relevant, I assure you. 

Scooped up all the shock that happened 10 days ago now, I was prescribed what is medically known as a ‘pulse of steroids’; with the particular steroid being, yes you guessed it, Dexamethasone. At the time, I thought I had been on a similar pulse of steroids before,  but I soon discovered that the only thing I had to compare this pulse to from previous treatments was like walking up Parliament Hill and comparing it to Mount Snowdon.

The course started with taking 20 tablets (40mgs of Dex) for four days, reducing to 10 tablets (20mgs of Dex) on days 5 and 6. By Day 7 and 8 I was down to just five tablets ( 10mgs Dex) and for the final two days, I was prescribed a piddly two tablets per day. Just in case you were wondering, this was to be taken on top of my usual-keep-things-at-bay and not-so-usual-pile-of-pain-medication. So, I have been taking a lot of medication. The prescription for the first four days was for more steroids than I had taken in the last four complete monthly cycles of treatment. It was a LOT of steroids.

When I first heard of this mammoth dose, I thought that it was the sour cherry on top of a pretty ropey, dry cake. It didn’t take long, even in the mental state I was in that day, to be apprehensive about this course of treatment. Eyes were rolled.

How big is the inevitable crash going to be? When am I going to crash? How am I going to go to the toilet over the next week? Am I even going to be able to go to the toilet? What’s my mouth going to taste like? Will I be able to drink water? 

Sometimes, I should spend less time worry about the answers to unknown questions and just let Myeloma take me for a ride. I mean, that sounds all very nice and tranquil and a creator of less worry knots. To be clear however, I would never complain about worry knots. If worry knots exist and you were to mention your own worry knots to me, especially after 10 days on steroids, there might be problems. Or at least some solitarily mocking.

I am digressing. I am constantly digressing and that’s because I am here to tell you what it actually feels like to take 238mg of Dexamethasone.  It makes your brain feel like fuzz. My mental recall, unless it is about episodes of the West Wing, is… well… what was I saying? At this rate, I am going to wish I had different friends. They are too learned for me right now.

Digressing again… I was right to be apprehensive about it. Prior to starting, I had already discovered that the Dex offered some pain relief in the 24 hours after taking it, but this was the only benefit I saw and I did not know for certain that it was the Dex that had made it easier to get around on that particular day. My immediate thought was that I was not going to be able to move for at least 10 days. At a push, I thought I would get through the first few days and then I would be a bedbound mess for weeks after, unable to get out of bed for a drink. Thankfully, so far at least, that has not happened.

Instead, the steroids ploughed me into a period of emotional instability supported by mass uncontrollable, US reality TV level of food cravings. It’s probably best to break it down. Wikipedia needs to update it’s ‘common side effects’ information because nowhere on that list did I see fatigue, constipation, tin mouth, facial hair growing  at the speed of light and tears, lots and lots of tears.

My first few days can be easily categorised as ‘the crying days’. Without the Dex, I dare say that I had some very valid excuses to cry, but on the Dex it was uncontrollable. My usual stoicism forbids this sort of behaviour and I have managed to install a usual system where my crying is done in the privacy of my fortnightly counsellor’s sessions or alone at the darkness of night.

I returned to the safety of Mamma Jones’s nest after the latest of my Bad News Day, and it was there, where I am surround by my immediate family, where I found a lot of things to get emotional about. I could feel that a full outburst was never far away and it wasn’t far away. Somedays, I cried just because the pain was overwhelming me. Other days, and these are the ones that surprised me, I cried in gratitude and in sadness and all of it was completely out of my hands. 
Something as simple as Mamma Jones bringing me my dinner. She cooked it, carried it upstairs to my room and served it to me every day. Almost every delivery resulted in tears, whether she saw them or not. The steroids made my insides come out. 

The worst part of my behaviour was around my nieces. Aged 5 and 10 years old, I do not know if they have an idea why they  Auntie Emma constantly breaking into silent tears mid conversation over the course of a weekend. It’s not something I chose to do, it was completely out of my hands and that is a testament to the power of steroids.

For the first few days, as I acclimatised and things sunk in, I just had to look at them and I immediately began to miss them. My brain would fast forward to that point in time where I once again won’t be there and I’d worry they wouldn’t remember me. Thoughts like that could come in an instance. Would I always be their favourite auntie (if I am indeed their favourite auntie) if they cannot remember me at all?  I asked the eldest if she would miss me, I know I shouldn’t have done, but my steroids took away the filter. Her answer was a ‘maybe’. So, bathed in love and not feeling remotely vulnerable, I cried again. The eldest was supposed to spend two days with me in London, and even the guilt at having to let her down had me blubbing. 

At my most confusing, at least what I imagine was the most confusing for them anyway, was a very innocent conversation about breasts or in our case ‘boobies’, that may well be ranked in my non-existent list of worst conversations ever. At the age of 10, my eldest niece is going through the changes girls go through. Her little sister enjoys this and proceeding to tell us that ‘Lara has little boobs, Auntie Emma has BIG boobs and I have no boobies’. That was it. That’s all she said. Even recounting said story makes my ears water. I immediately started to cry, not loadly, it was more of a silent, please do not see this, sort of cry. It was so innocent, but it highlighted how much there is for me to lose and I have absolutely no control over it. I think they rallied together, but I am pretty sure they had a few days of thinking that Auntie Emma was a total wing bat.

I expected the mood altering side of steroids to manifest itself into rage. Sorry, I meant RAGE! It did not. Even when two women complained bitchily to me that I had put my luggage in the wrong place on a train carriage resulting in them dismantling my disabled friendly bag set up lovingly done by Big Sister, so they did not need to lift up their own suitcases,  even then, the rage was nowhere to be seen. Instead, I apologised, returned to me seat and cried. I should have told them why I couldn’t move my luggage, or why they had just seen my sister escort me onto the train, or why one of the bags was full of prescription medication and another contained two empty specimen bottles awaiting 24hrs worth of my urine, or why I was free to travel in the middle of a week day. I should have done all or any of these things, but I didn’t. The steroids just made me cry and I am wholeheartedly ashamed of myself. 

Maybe that will come, but if it is anywhere near as strong as the tears, stay away from me. Actually, don’t stay away from me, the steroids make me paranoid and I do not want to feel like that either. Anyway, I cannot do up my bra at the moment, so I doubt I’ll be getting into any physical fights any time some.

I suppose the tears the could be neatly boxed under Wikipedia’s ‘depression’ section. I do not think I have been able to portray the weight of the feelings I felt. Just do me a favour and trust me when I say it was ‘bad’. Thankfully, as my dose has lowered, there have been less tears. I have been feeling far more aligned with my usual self and that involves burying my true feelings until I am alone or with my counselling. A healthy approach if ever there was one. 

All other side effects, possibly with the acceception constantly thinking I have glandular fever and excess facial hair, are concentrated around bodily holes. That is how powerful steroids are. 

If there is one thing that a pulse of steroids did to me that I was expecting, was to increase my appetite. A bodily hole. I dare not total up how much I have eaten in the last ten days nor how many calories have been consumed on pretty much zero physical activity. It’s a lot. Like, a bloody lot.  As I soon discovered, the Dex did not have me searching for all foods, just the bad ones. I know asparagus is good for you and I like asparagus, but a tin of mushy peas made a far better plate fellow with a pie.  Like I really had to explain that? 

Dexamethasone when taken in isolation and mixed with my body loves nothing more than carbohydrates. If said carbohydrates happen to be served fried, with butter or with a sprinkling of cheese,served with a massive piece of chicken, comes in a packet disguised as a crisp,  or as a cake then that was Nirvana. Fulfilling each craving felt medicinal.

Thinking about food beats thinking about death, but I have never known my desire to eat to be so all consuming. I’ll be honest, and this does make me weak, no ifs or buts, I gave in to every single craving. I’m sure a nutritionist might have a view on this, or just an opinionated person who eats a lot of greens, but I do not want to hear it. I know that it was bad having a bowl of frozen mash potato as a snack one hour before dinner, but I needed the instance gratification despite the fact I had only just finished half a tub of hummus and had porridge for breakfast. The four slices of Soreen that followed that dinner were also completely necessary and, unavoidable. It was treatment.

I know that I have had steroid cravings before, but this last week has been a whole new realm. I arranged a supermarket delivery on Saturday and on top of including foods that would keep me semi-independent, I ordered Skips, Wootsits, Squares (salt and vinegar), toffee popcorn, mini popodoms, boxes of cereal and a packet of bagels.
 The shame!

On Friday, I sent my friend on a quest to my favourite bakery in London to buy slices of my two favourite cakes in our fair land. It was all to satisfy a craving that started 24 hours before. On Thursday, I found myself on Tottenham Court Road with 90 minutes to kill between appointments. In theory, the cakes could have been mine then, but in practice, they could not be. Do you know why? Because I could not walk the 0.8 miles round trip to get them. I had to settle for a Krispy Kreme instead and I do not really like a Krispy Kreme. Oh, just to maintain some level of continuity with this blog, do you know what happened when I realised I was unable of walking to Konditor and Cook for my slices of Lemon Chiffon cake and a Curly Whirly? I cried.

As with anything that goes in, it must come out. Wikipedia definitely neglected to tell us about this. The only thing I will say on this matter, is sodium docusate. Sodium docusate and lots of it. My long experience in large doses of steroids does not support any argument towards diarrhoea. Steroids mixed with the pain medication I am on, causes the opposite issue. I prepared for this eventuality and so far, so every four days. Yesterday, my experience can only be classed as sublime.

Being on so many steroids also had me searching my brain for the techniques of years gone by. Again, this relates to holes. Linseed is a lifesaver, just don’t accidentally let a puppy eat it. 

Finally, no story of mountains of steroids would be complete if I did not mention the effect it has on my mouth. I used to call it Tin Mouth. I still call it Tin Mouth. I think I have listed enough life altering side effects already, but do not underestimate the impact of having everything in your mouth, including your salvia tastes like mental. Thank goodness nobody but my dentist gets near my mouth. Every flavour is distorted. No amount of ice lollies will get rid of it. My tastebuds are tainted. The weather this weekend was lovely, but I could not quench my thirst with an ice cold glass of water because such a thing would taste of week old unbrushed teeth mixed with pond. Thankfully, though probably not for my kidneys, steroids make me less thirsty than usual, but unfortunately one still needs fluids to function. People like me need fluids to take their 20-40 pills per day. The trusty brew is strictly off the menu. The only thing that tastes remotely like something I would want in my mouth is lemon squash. That was another thing I had to think about and prepare for. Squash had to be purchased.

👅🐽😭👅🐽😭👅🐽😭

I think you get it now. A course of steroids is no walk in the park. I mean, I cannot walk around a park at the moment, but it’s hard. The Dex, even though it is there to help, above all the other medications I take it seems, mostly to hinder. Nothing seems safe from it.  I would even go as far as saying I hate them.  I hate that I have to make sure I take it by 11am, even if I am too tired to make sure my stomach is full, so I can get a good night’s sleep. I hate that even though I have taken it early everyday, there have still been nights where the power of the Dex have overpowered the strength of my sedatives.

Most of all, I hate the unknown. I finish said course of steroids today and I have no idea if I am about to have one of those, all too familiar steroid crashes.  I have been preparing myself for this for 10 days, and it looks like it may not come.  Do I let my guard down?  It’s not worth the punt.

I will never live a life completely free of steroids. I may get to be free of them for the next week, but they’ll be back. They’ll always come back.  Dexamethosone goes with Myeloma like salt in porridge. They should always be served together. It’s an acquired taste. 

In conclusion, despite everything I have written, I am a liar. Despite previously willing this pulse to end as quickly as possible and for the steroids to depart my body,  I do not want to stop taking them in the short term. In fact, first thing this morning I called the  Medically Trained People ready to beg  them to allow me to  take more.  

I do not want to prolong the mouth, waist and emotional altering torment just to give me something to talk about. I just want my pain to improve. And at the beginning of last week, for 12 hour periods at a time, my pain improved. The Dex really did act as an ‘anti-inflammatory agent’. Last week, when I was taking 20 or 40mg a day of steroids, I may have been eating non-stop and crying at the sight of the dog, but I could walk normally. I did not walk like Quasimodo. The ‘pulse’ of steroids, designed to control my pain, actually did control my pain. I’ve weighed it up in my head. I will get more from the steroids right now, crash or no crash, than I would by not taking them. The radiotherapy is going to work, it’s just not going to work right away and I need some independence. I need to be able to clean the mushy peas I dropped on the kitchen floor on Saturday.

I never thought I would say it, but I don’t think I can do it without them. 

EJBx

P.S. I cannot think of steroids without thinking of the sign my friend made for me all the way back in 2012, that states ‘It’ Only Da ‘Roids’. She’s literate by the way, I think the use of ‘da’ was designed to make me smile.  It’s a thought I hold close. Through tears, shout, late night shopping and whatever else it throws at me; steroids are not my controller. 

Myeloma is.

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The Fear – Part II

You have stopped responding fast enough to traditional Myeloma treatments’.

Fuck. 

Few things warrant the use of such foul language, especially in the written form, but a ‘fuck’ or a ‘bugger’ is definitely suitable in the situation I found myself in last Thursday afternoon. I didn’t say it out loud; I was still able to maintain some level of decorum.

I think I know what that statement means. It’s not the worse news I could have received, but it is not far from it. It wasn’t what I was expecting. It is a polite way of saying that my treatment isn’t working. Not working. Stupidlyhow could I have thought my treatment was working when I was in so much pain? In fact, after my first full cycle on the recently licensed drug I was on, I told a Medically Trained Person that I did not think it was working. I wish, with every weakened bone in my body that I was wrong. I wasn’t. 

 Am I dying? 

I don’t think I thought all of this or processed it when I was in the Medically Trained Person’s office.  I was in shock and I was trying to hold myself together. I didn’t hold myself together. I couldn’t speak, not initially anyway.  The first words I uttered, did not sound like fully formed words. It was an explosion of emotion. I tried to say that I wanted my hip fixed but that became a sob about how overwhelmed I was with the news. That’s right people, in this circumstance, I simply chose to yelp ‘I am so overwhelmed!’. Then I sobbed. It was not a cry, it was a snot-producing, face-pulling sob that was softened when I saw the tears in the eyes of the Medically Trained Person.  

I haven’t had long enough.

Thank goodness for my Big Sister. I had no doubt that she would step up in this kind of  situation and step up she did. I think I had become deaf to what was happening around me. To me, everything that happened in that room was a blur, but she wrapped me up in metaphorical love and got on with what needed to be discussed. It could not have been easy for her. It is one thing to be afraid of something, but facing that fear head on, whilst holding somebody else up, is on another plain entirely. I know that it was not just my fear either. What is happening to me, what was said in that room, is a fear held by everyone I know (and happens to like me). I will readily admit that I lost control. For the rest of that afternoon I repeatedly tried to compose myself, but failed miserably. I didn’t know that tears could flow so uncontrollably. Nor did I know that I was capable of talking such complete and utter drivel. But, for the rest of that afternoon and evening, I had my sister sitting next to me, looking after me and discovering the many benefits of a banana milkshake.

Am I a failure?

Anyway, let’s move on from this emotional mumbo jumbo; we have some real business to get to. In a nutshell, despite three stem cell transplants and many, many rounds of treatment my disease is currently active and my paraprotein is on a rampage. It is so active that I have to have radiotherapy on the distruction it has created in my body. Whilst the drugs I have been taking including the one I changed to in January are doing something, the cruel circumstance is that they have not been doing enough. This leaves the question I asked just a few months ago, what else is there?

Is this the end of the line? It now seems an almost rhetorical question. 

I do not wish to bore you with the history of Myeloma treatments, largely because I’ll reveal how little I have chosen to know about it. I’ve been deceiving, most of you will know far more than I do on the subject. For where we are in my story, all you need to know is that new myeloma drugs tend to be derivatives of older drugs. They are related.  This means, in a shake-your-head, we’re-out-of-ideas sort of way, the Medically Trained People do not think that such medications will work on me for much longer. It’s hard to process that, I almost have to sound it out in slow motion. And then repeat it. And repeat it again.

There are too many things to say about all of this and I don’t have the distance or the benefit of an adequate pain and drug feee sleep to eloquently describe how I feel. I know I am angry. Since I was diagnosed, I did everything I was asked to do. Almost anyway, I haven’t lived in a complete sin free bubble, but I have lived and I have done what I have been told to do. I took my various treatments, I coped with the disappointment after disappointment and still, I get out of bed almost every day and take the pills I have been prescribed. Yet it has still gone wrong. I used to joke that given my age and the flocks of people trying to help me, that I was a medical marvel. I willed myself to be, terrified that I wasn’t. It now transpires that the only thing marvellous about my treatment history is in how powerful my Myeloma has been. Perhaps I should have gone gluten free as one nosy Parker once offered as superior soundbite.

I do not believe in any kind of divinity. I have nobody to prey to and nobody to blame. A stranger once told me that my lack of faith was the reason I had cancer, but let’s face it, there are a lot of knobs in this world.  When I add it all together, I just think something bloody awful has happened to me and no matter how much I have fought it and continue to fight it, it’s stronger than I am. Long gone is my bereavement for my lost children, old age and a picket fence. My fears now seem so much more urgent.

I don’t know why this happened to me, but for the last week, I have felt ashamed. I know that I did not bring this on to myself, even if I do love white bread too much. I do not believe that somebody’s willed for this to happen to me. And yet, I feel like I should have told my body to do more. Fight harder. Forget about being polite and smiling at everyone, I should have been a total bitch, constantly in attack mode like the scary army captain I met once in the cancer centre who made me cry when she announced it was her sheer willpower that caused her continued remission. I have willpower. I have multiple reasons to live, and yet I currently live in a world where I cannot do up my shoes.  

I should have reacted better to my medication and treatment plans. All those odds, all those odds and I was always on the wrong side. I’m angry that all of this is making me think about what this world will look like without me in it. I didn’t realise I have so much to lose. I watched my mum run around after me at the weekend, making me food and making sure my neck was adequately supported by my pillows, I listened as my nieces nervously tried to make me laugh as I tried to rewind my tears, as their Mum tried to keep us strong, and with every vibration, I could feel my friends trying to cheer me up or express their anger. I feel like I have let all of them  down. 

I made so many half promises about my treatment. This one will work. We will go on that trip. I can make it to that pub. Seeing the waves of broken promises scatter around me is my new definition of fear.

But what the hell is all of this? I cannot stop yet. I must not stop yet.

The Medically Trained People aren’t quite ready to stop and nor should I be. Last Thursday, when Big Sister’s concentration powers really kicked in, I was told of a clinical drug trial at St Bart’s involving antibodies. I could give you the medical blurb, but I think I should save that for a rainy day. All you need to know is that it is completely separate to all other treatments I have had. It might work, it might not, but the space on the trial could be mine. It took a few days, but I can now firmly say that I take back everything negative I have said against that hospital. 

A lifeline. 

It may sound foolish, given my very limited options, but the thought of leaving the comfort of UCLH once more added to my devastation. That hospital, in both my successes and failures have held me up. I have no other point to make on this subject, but it’s important. Ever the pragmatist however,  as I said last week, I think I said it anyway, if it is not clear to you yet my memory is a haze; ‘it is what it is’. I have to get on with it. 

On top of all that has come before this,  we had to discuss my need for radiotherapy. The practicalities. You can imagine how long this one clinic appointment felt. So much to take it in, so much to fathom. Ahead of last week, when I was suffering from worry filled sleepless nights, I thought the good and bad news hinged on the what was found in my MRI.  Clearly they did not, and now it seems easy to forget that I need some fairly urgent treatment. I have something in my neck that shouldn’t be there for crying out loud. And yet, the radiotherapy feels like it has become secondary to the ‘big news’ despite how quickly I have once again found myself increasingly immobile. 

I do not know if it is in the form of lesions or tumours or the generic term of bone disease, but I require treatment in my neck and my hip. The area in my neck has caused the majority of my recent problems in my upper back and my arms. Again, this may sound minor, but wondering why and how I have lost the sensation in half my hand for the last month, is a blood-curling. To even consider how the knee bone really is connected to the leg bone is mind blowing. If anybody has seen me move in the last month, you would have witnessed how much this pain has made me squirm. The pain and this is something that has not happened in a long time has been at a cry inducing level. I have cried not because I feel sorry for myself, I mean I have done that too, but because the physical discomfort has been so great.

It’s a juggling act though. As I am now due to start a new treatment at a different hospital, my doctor was reluctant to also zap (a term I have used a lot over the last week when discussing my radiotherapy, mostly because I can use an emoji) my pelvis. It may lower my blood counts and it will make me feel groggy, but even in the whatever state I was in last Thursday, I knew I needed my hip fixing. To get through my next, I have to be as fit as I can be.

I think it goes without saying, but the last week has been a whirlwind. It doesn’t feel like a week. In whatever timeframe I am now working in, and I guess it is a new timeframe now, I feel like my world has been turned upside down. I have so many things coming from so many directions, that I laugh at the meagre everyday complaints I have been able to read on social media. I used to think I was a great multi-tasker, but when it comes to affairs of my life, and the time that is left in that life; I do not have the foggiest.

I have to give myself a few passes. Firstly, I have been put on a ‘pulse’ of steroids, that is controlling my pain and will hopefully hold the myeloma whilst the Medically Trained People are doing their juggling. It is a ten day course of as much steroids as I can take. That’s right, ten days, decreasing by half every other day. It’s a well known fact that I cannot take a lot of steroids, but to put it into perspective, the first day’s dose was more steroids than I usually take during a full cycle on my old treatment and each weekly dose of that put me in bed for two or three days. I am awaiting for the inevitable crash increasing alarm and dread.

Secondly, I am currently on a lot of pain medication including sedatives. I basically rattle. 

Thirdly, I am once again struggling to look after myself more than I usually struggle to look after myself. I cannot bare weight in my left arm, my right arm is starting to go the same way and every activity, whether it is washing, eating or cooking seems impossible. In this mindset and the physical prison, I have to arrange my forthcoming radiotherapy sessions and attend the necessary testing for the clinical trial. And don’t think for one second, I have done any of that without my lipstick on. On Monday, which again is a story for another day, Mamma Jones and I spent 12 hours in London waiting, meeting new people and satisfying my steroid induced hunger. Today, I have seen a doctor, looked at some scan results, been measured and had two radiotherapy tattoos. 

Lastly, I just ask you to add everything up, consider everything I have said in this here blog and attempt to fathom where on earth I can begin. I have to begin somewhere after all. Welcome, to another volume in my possibly soon to be ended story of my life. 

To clear my head, Mamma Jones took me on an epic adventure to a National Trust property last Friday. I thought you might appreciate the evidence that I am still here. Getting out of bed.

So, there it is my current story. It’s not cohesive, it’s all over the place because I am all over the place. It’s new. It’s daunting. And my goodness, it is fucking scary. 

EJB x

P.S. Kudos, and I mean bucket loads of the stuff must go to my Medically Trained People and the NHS in general. In just seven days, they have seen me transferred to St Bart’s for (hopefully) the start of a clinical trial. UCLH somehow got my name into the mix of said clinical trial and St Bart’s seem to be moving whatever needs to be moved to accommodate me (no jinx yet though). They have also liasied with the radiotherapy department, resulting in an appointment today which included all my pre treatment measurements, ensuring that all areas requiring treatment are attended to. The treatment for which is starting tomorrow and will conclude next Thursday.  I have no more words in me to describe my gratitude.

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An Almost Quarterly Update

You may be wondering, ‘what the hell has Emma been up to?’ I wouldn’t blame you if you are, my life is an unpredictable rollercoaster of super fun times that many people would wish to emulate. It is for that reason that I don’t keep my blogs up to date and not because I am too tired, stuck in my bed and unable to follow the plot of Pretty Woman… Sure, I can always dream. The closest my life could come to a rollercoaster would be the teacups, where one goes safely round and around  finding the occasional thrill within the monotony, let’s say, like waving to somebody you know each time you pass them as the teacup swirls.

I’m being  a little harsh. I had a jam packed February, one that has left me feeling exhausted, sick, frustrated, happy and satisfied in equal measure. It was jam packed for me, jam packed for somebody who spends at least two full days a week in bed and has 4 good hours a day on a good day. Looking forward to it, way back when in January, I thought my plans impossible. 

Before I explain my month of (relative) excess, I should tell you what is happening with my body. Spending so much time in bed, measuring time by cycles, I struggle to fathom actual time now, but for the sake of this story, let’s go back to November. I realised that my paraprotein level was no longer falling as quickly as I would have liked. The dastardly thing had started to plateau, which by January meant the Medically Trained People took as a sign that I should be on a different treatment regime. It had stopped working after all. It was a decision that made sense to me, but worried me at the same time. It may have plateaued but on the other hand, it was not going up, could a new treatment offer more?  

In all of this, I am unable to forget that myeloma treatments are not infinite. There are only so many treatments that exist and if I work through all the possibilities available at a 6 monthly pace, what does that mean for my longevity? 

I’ll let you think about that for a while, because I have been thinking about it for a long old while. Three failed transplants and another failed treatment; I do not think it is pessimistic to put two and two together and work out the obvious. Though, I imagine my nearest and dearest do find my arithmetic something gloomy.

On the other hand, I do not think it is healthy to dwell, so let’s move on. 

My new treatment was introduced at the beginning of January. Unfortunately, I caught Influenza A, which is a bog standard flu to the masses, but in me, it meant everything had to stop. It meant isolation and face masks. Points must be awarded to my CNS who decided to swab me after I fell asleep in the waiting area, despite my protestation that it was only a slight cough and I was fine. Catching it early meant that the anti flu medication worked, meaning it only took me a fortnight to get over the flu instead of the six weeks it took last year. I was also able to suffer from my own bed instead of a hospital bed, for which I am most grateful. 
As an aside, following this experience, I will inform the Medically Trained People of any new ailment as soon as I experience it. Well, within 24 hours later. Maybe 48 hours. What I am trying to say is that I will not try and manage it alone now, the consequences of a slight bug are not the same as they once were. I must use my common sense and being a martyr does not equal common sense as much as I think it makes me look like a badass.

So, I got over the flu and once my throat and nose had been swabbed once more, I commenced my new treatment. I am sure scientifically there is a difference, but practically there is not a great deal to distinguish between a regimen of Revlimid, Dexamethasone and Ixazomib and a regimen of Pomalidomide and Dexamethasone. I still take one of the drugs nightly for three weeks, with one week off. I still have to take steroids weekly and I still feel rotten as a result. On the plus side, I do not have to deal with the sickness caused by the Ixazomib. The downside is that I have not had a paraprotein result from the new treatment yet and thus, I do not know if it is working. 

The last month has made me pause to consider whether said drugs are working and that is not just because I am plagued by pragmatic pessimism. I am in more pain than I was in December. I hope this is a result of over exertion in February. The jury is out on that one.

I am not the sort of cancer patient who reads up on new treatments and overly questions the Medically Trained People. I have chosen to trust them, rather than invest my energy trying to find a better solution. Some may disagree with this approach, but that is how I manage. I only mention this because Pomalidomide has only recently been made available as a regular treatment in the UK and I did not know this. It makes me hope that there will be new drugs and combinations of drugs, that will broaden that scary finite list that I (and so many others) am a hostage to.

Prior to last week, I had been on constant treatment for five weeks instead of the usual three weeks and I could certainly feel the difference. It felt like everything about me from my brain to my toes had slowed down. I don’t think my recent fatigue was helped by starting my new treatment straight after the flu either. Just trust me when I say, it has been exhausting. 

Despite the dense fog of exhaustion where I found myself for almost the entire month, I have had an exceptionally time of it. My compromised body handled February pretty much the way I expected it to handle it. With difficulty.

I was honoured to be invited on a Stag Do, taking place in Amsterdam. Yes, a Stag Do. That’s positively normal behaviour for humans of my age. I thought long and hard about all the issues I would have to face, weighed up the pros and cons. Limited walking, early nights and limited energy compared with the 21 able bodied thirty somethings also going we’re definitely high on the ‘con’ list. All of it pointed to not attending, but where’s the fun in that? Giving in to it, no way Jose!

Inevitably I scrimped, scraped, borrowed and I went. That act alone felt rebellious. I also travelled without medical insurance cover for the simple reason that I could not afford  a £260 minimum spend for a three night trip. That wasn’t rebellious, it was reckless and it won’t be something I would dare repeat, especially to a location covered in snow and ice. I usually live in a world where I would not step out of my front door if there is a mild frost. It meant as great a release as my trip was, I could never fully relax because I feared something would go wrong. I had even planned a contingency of Mamma Jones driving over to Amsterdam to rescue you me, were something to have happened to me.

Prior to the trip, I decided that I would loom knit a hat for each attendee. If you were still wondering what I did for January and the first 10 days of February; the answer is hats, lots and lots of hats. Sitting on my sofa making hats. Dreaming about hats.  I think it was a project that whilst garnering a great deal of personal satisfaction for being able to complete such a task, it put me on the back foot energy wise before my busy February even began. I gave myself no time to relax because I was proving a point that did not need to be made. 

I won’t go through everything I did in Amsterdam. Just know that it was a tonic. A very large tonic. I never once had to lift my suitcase and whenever I left our accommodation I felt protected by a group of bodies who were almost as worried about me slipping on the ice and breaking a bone as I was. It is quite different going away with a group of friends then going away with one’s mother. If there was a secret test, my friends certainly passed it. In a nutshell, the only person to make me feel like there was something wrong with me, was me.


This computer in Amsterdam said I was Happy. It was correct.

Leaving Amsterdam, walking through the airport, I realised that my body had done all it could. I feel for the person walking with me to the gate as he was met with a constant whiny chorus of ‘I can’t walk anymore, I can’t walk anymore’. On returning to London on a Tuesday evening, I got straight into bed, took my nightly dose of chemo and my weekly dose of steroids and stayed in bed until the Friday. I had to leave temporarily on the Thursday to go to a meeting, but that required Marvel Studio-like strength and resulted in the most horrible feeling of weakness that had me yearning for my bed.

On that Friday, the one where it took me until 15.30hrs to have the energy to get out of bed despite my cleaner trying to change it, I was due to travel out of London for a wedding. For somebody that has four hours of energy a day, on a good day, this was a mammoth task. Gargantuan. I was not going to miss the wedding however, it was too important and I too stubborn for that to have been a possibility. Somehow, and I really do mean somehow, because I have no idea how I achieved this, I managed to pack, shave my legs and meet my friends at our car rental for 17.30hrs.

Once again, like in Amsterdam, I felt fully protected by the people I was travelling with. They were so considerate of my limitations, I felt like I was getting my energy through them. They drove me to my hotel, financed said hotel and just made the whole thing possible. It made it possible for me to watch a dear friend get married, with my body only giving up two hours before the wedding was due to end. Give up it did. With all the excitement, drugs and post Amsterdam fatigue, by 22:00hrs, talking was proving to be impossible. Walking, from an afternoon of standing and not putting my feet up, had slowed to a shuffle accompanied by constant pain from my pelvis to my neck. Unavoidably, having lost my ability to speak and most of my leg function, I had to leave.
This is me posing next to, I do not know what, at said wedding. 

Leaving early made me so angry. There are times when I tolerate my body, but crawling onto my hotel bed trying to make a nest of pillows large enough to ease my pain, I hated my body. I was embarrassed by it. I was annoyed that I could not speak to the friends who where there as much as I would have liked because my body had automatically switched to battery saving mode. Whilst in that mood, I also became irritated that the same rules applied in Amsterdam. I may well have got the most I was capable to get from it, but I did not get to experience everything on offer. Myeloma always makes me feel, even temporarily, that no matter how much I participate, that I am on the outside looking in. 

Fortunately in this instance, I took 10mg of Amitriptaline and I was able to have some resemblance of a reasonable night’s sleep. Waking not to a feeling of melancholy, but to a hangover mixed with pleasure that I was invited and able to attend the wedding, I forgave my body. It has not been forgiven yet. 

All my common sense tells me that when one is as deep into the myeloma journey as I am, I have to see these trips and experiences as a bonus. In February, I had two big fat bonuses. 

I’m paying for all of this now. On the Sunday I returned home, I got into bed, took my steroids and stayed there until the Wednesday. I then travelled back to my parents’ house and spent some more quality time in bed, feeling the burn.

Ignoring the puppy draped round my neck, I think this photograph sums up ‘the burn’ pretty well.

It is now almost two weeks later and I am still tired. I am always tired, but sometimes, just sometimes, I can pull a rabbit out of a hat and experience something different. 
Running throughout this whole period, in addition to my pill popping ways, I also completed my annual Oscar challenge. To quote an Oscar winning movie, I will ask myself when frustration kicks in, how do you like them apples? 

EJB x

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Last Christmas

The following was written some time ago, but unfortunately, I live in a world full of germs and I caught Influenza A and subsequently forgot that I had written this blog, let alone that I needed to post it. It seems a shame to waste my ramblings; so close your eyes (then open them again so you can read) and take yourself all the way back to December 2016:

  🎄 🎅🏻 🎄 🎅🏻 🎄 🎅🏻 🎄 🎅🏻 🎄 🎅🏻  🎄 

You may think that Christmas was so last year, but as today is the 10th Day of Christmas, I think I can just about sneak a blog post about Christmas under the radar.  Plus, ordinarily I love Christmas, so it would be remiss of me after a year of blogging very little, to not recognise Christmas as it is a pivotal part of my annual calendar.

This year, things were different. I found it incredibly diffficult to get into the Christmas spirit. The Christmas spirit usually comes so easy to me. The drugs seemed to have sucked all the energy out of me, preventing me from participating in some of my favourite Christmas activities. Thus, going through December, I was not seeing combinations of red and gold and getting goosebumps, I wasn’t singing O Come All Ye Faithful in the shower. I felt nothing. I know what the main cause for my humbug was, and it opens one up to saying a crude but well timed joke about George Michael; was this, 2016, going to be my last Christmas? I’m not plucking this negativity from the air by the way, there’s a genuine (outside) chance that it was. With that seed planted, what Hope was there to have an innocent, Myeloma free Christmas? 

So, when it came to making my beloved Christmas cards, cards that I had designed and invested time and money into, and had been thinking about since September: I just couldn’t do it. For at least three days, I slept next to all of my craft paraphernalia convinced it would help me complete them. It’s a similar strategy I employed at university walking round with the biography of Menachem Begin for six weeks, hoping that it would go in via osmosis. It didn’t work then either. Comparing the feeling I had to university stress is apt. The enjoyment I was gained from this activity, had passed. All I felt was undue stress. 

I argued with myself for three weeks. You enjoy it, Emma! Pull your finger out, Emma ! Everybody is expecting them! You are a failure! That was one side, the other side just rolled over and fell asleep. It seems like such a mundane thing to get so upset over, but upset I was. Every year since I was diagnosed, I have made my own Christmas cards. Last year, I made and sent over 50. Was the fact I could not do them a sign that medically, I am detiorating or had the Grinch simply stolen my Christmas?   

I cannot answer those questions, but on top of not making and sending Christmas cards, I also failed to do any Christmas themed baking or make the additional decorations for my tree I had been planning for months. The weight of each of incomplete activity, was unfathomable. Is it really possible for me to have an enjoyable Christmas without all the planned activities I once deemed to be fun? 

I refused to give in. I sought any excuse for my humbug that did not involve Myeloma and the makings of a bad TV movie. It must have been somewhere. The search felt endless. Could my lack of festive feeling be due to my age?  That’s never been an issue before, so Veto. 

Due to financial restraints brought on by  not working and being on benefits , I was unable to buy many Christmas presents. Thinking about what gifts I can buy my loved ones and wrapping them up in a style to suit the recipients personality, has always been a Christmas highlight. But alas, that was no longer open to me. I found that I did not even have the energy to think about presents. 

What about work? I thought. My experience of working in an office is that during the month of December (and the back end of November) there would be at least one discussion a day about Christmas. Work drinks, family drinks, Christmas presents, wrapping; the talk was endless. Despite forcing myself to watch endless Christmas movies, perhaps my failure to socialise with colleagues, buoying each other’s festive spirits up day in day and day out was the cause of my sadness. 2016 also marked the first Christmas I had not been invited to a work Christmas Do since I was 14. 

Could that really be it? Had being forgotten by my work colleagues ruined Christmas? In short, no. Veto. I was invited to the Christmas party last year and chose not to go because I could not afford it, and I did not feel any the worse off. Like last year, my free time has to be used and planned carefully. I do not have seven days and seven nights to play with anymore.

It would also be wrong not to mention the level of pain I was in during December. I was in a lot of increasing pain, which on many a day, prevented me from moving. I don’t know how responsible it is, but my chronic pain was definitely guilty of ruining some of December. Upon return to my mother’s I discovered that I could no longer climb stairs without using both banisters. Yet another sign of deterioration perhaps?

Somewhere around the middle of December, coincidently, the day Rogue One was released, something strange happened. I uttered the words out loud that I was not going to be able to complete the cards, Mamma Jones told me it did not matter, and I began to relax. I really relaxed. My dear sweet Mamma lifted the weight off my shoulders at a most crucial time.  Socialising time. 

The 16 December launched four days of back to back socialising, which believe me, is now something very hard for me to do. I was suddenly busy and somewhere in that busy-ness, and laughs with my friends, I stopped dwelling. I stopped yearning for what once was and I began to enjoy myself. I smelt satsumas, mince pies and sang along to the Muppets. Finding my way out my slump gave me goosebumps.

And then, there was home. Home. Aware, at least I think they were aware, that I had been on a long Myeloma Downer, my family pulled out all the stops (at least I think that it was intentional). Christmas itself was marvellous. For the nine days I was home, Big Sister and her offspring were around for eight of them. I felt loved. The time went so quickly, that when it came to New Year’s Eve, I did not want to leave my family. For leaving meant that Christmas would be over and we might not know another one like it. 

Before I move on, anybody advising positivity, believe me when I say that I do not want my fears to become a self fulfilling prophecy. My fears are real and I cope with them by voicing them, much to the chagrin of my loved ones. I see things more clearly this way.

I did not intend to enjoy Christmas. I had been so worried that it was going to be my Last Christmas, that I was convinced I would find every tradition, every action, melancholy. Melancholy doesn’t cover it, I thought that every tradition, every action would rip my heart out through my throat and lay it bare for all the world to see. Thankfully, that did not happen. 

This photo clearly shows me unwillingly embarking on my journey back to London Town.

For me, our Jones Family Christmas worked so well because everybody, well all eight of us, was home. At no point was I stuck in the middle of nowhere with nothing to do. Between Mamma Jones, Big Sister and my neices, I had plenty to do. We did things together as a family and had family fun; I wanted to bottle the feeling up and savour it. 

I do wonder, with the benefit of a few days of hindsight, if it is possible to have a Christmas without the feeling that it will be my Last. Should I have just saved this blog for next Christmas? It’s the unknown. Everything from here is unknown.  I do know that things are changing, I can feel it in my aching bones. I was aware as of the 22 December that my treatment is going to change at some point in the near future, meaning my current treatment is failing. We are running out of options. Another daily thought that added weight to this theory of doom. 

I spent my New Year’s Eve with some friends, doing things that adults do like watching Jools Holland, eating nibbles off paper plates and playing board games. Somehow, I managed to stay out until 4am. I don’t think I did that for all of 2016. To fast forward, I did not have a hangover on New Year’s Day. A success by no stretch of the imagination. 

For the evening in question, I had managed to surround myself with good people and there were a few times during the evening that I could feel that hand approaching my heart again, ready to detach it from my body. I really am full of emotions these days. I don’t want to repeat earlier paragraphs, but essentially high from my visit home, now surrounded by friends I love, I wished that this was not my last New Year’s Eve. 

Despite being asked the question, I did not make any resolutions for 2017. I do not see the point, not for me anyway. Every time I was asked about resolutions or plans for 2017, my answer was the same. I do not want to make noticeable  changes. I want to keep on living. I want to be able to do what I am doing, maintain my freedom.  I want to enjoy my friends and my family. Most of all, I want to be able to make the most of my good days and get through the bad. 

Perhaps these are resolutions after all. 

And this is where the writing stopped and the flu took over. It took over for a whole fortnight, marking a great start to 2017. I know what caused the flu (New Year’s Eve) and who the culprit was (Nameless). I still would not trade NYE’s, despite the vomit and general foulness of the flu. I was ‘living’, right?

EJB x

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My Finest Hour

Forgive me. Seriously, in the words of Bryan Adams ‘please forgive me, I know not what I do’. Every time somebody has asked me recently if I was done with my blog, it strengthened my resolve to complete a blog.  I am far from finished with the blog; that was clear. What was not clear, was how I was going to rip off the gargantuan plaster covering my keyboard and get my thoughts to screen after such a long break and such a massive development. I know I have been neglecting this blog, but do not think I have not been thinking about it. Every other day I look at the WordPress app on my phone, a reminder of my world and I challenge myself to finish a blog that day. Clearly that failed. I get distracted. I probably had to wash and focus on my fluid intake. I am all so easily distracted. 

Where was I? Yes, the story I am eventually going to to tell is far from being hot of the press. In terms of speed, if I were a missionary in Africa in at the start of WW1 writing home to tell my family I had fallen in love with Humphrey Bogart, the news of said union would probably have found its way to my family long before I could find the words to explain the last few months of my life. 

In my defence and I have a big one, the last few months have been an exhausting and confusing blur. Contrary to what it may look like, I have very limited free time. My main priority has had to be me working out how I feel and how I want to hold myself, which is closely followed by doing daily tasks like washing, eating and forming sentences. No mean feat, all things considered. 

To produce something, something not soaked in self pity and embarrassment, it was impossible for me to immediately put all of this in my blog. Please don’t misinterpret me, I have a lot of words in my arsenal, I just do not seem to have the capacity to put them into any form of working order with a hint of wit. My Myeloma has dumbed me down. I have had a strong  will to write it, but at each start attempt, if I managed to get any  further then the first sentence by inner monologue would start  singing a tune of my own creation called “Blah” or I would want to play at Candy Crush and think of nothing. The words would the be lost and more often than not, I then fell asleep. I would then wake, I may be sick and then the cycle starts all over again. It’s an invisible pressure that only I see. I am all too  aware that I will get a crispy clear clarity once my words are published out in the Internet ether, but it’s just being able to get in there…

So yes, your forgiveness is something I ask for. I now recommend that you buckle in tight for this is going to be a long one, for this, all of this, has been anything but my finest hour. 

My last blog post was a boast, it was not even my boast, it was a boast made by a Medically Trained Person. My life was on track, I’m not sure what track but I was moving in a direction with less drugs, regular stools and finances. I had trepidatiously allowed myself to think more than a month a head. I was moving in a direction that excited me, secretly hoping for and  releasing my grip on the thought that My Myeloma was never far away…

As it turns out, I was not far away. Some time after the ‘sweet spot’ comment, I went to St Bart’s for a clinic appointment that I thought nothing of other than my attendance was a requirement. I had become comfortable and my guard was down. Imagine my horror then, when after a lengthy silence and grimaces of concern, the Medicaly Trained Person told me that after months and months of nothing, I had a paraprotein of 4. I don’t really remember what happened after that. I know we discussed scenarios and she tried to but a positive spin on it, but I knew there was only one direction for this development and it was not an error on the test. I had felt it in my bones for weeks but I had been reassured that my new pain was nothing to worry about.

In that morning, I did not cry. I stopped talking. I had one desire after that appointment and one desire only, and that was to get home. Unfortunately, I had to queue for an eternity at phlebotomy and then at the pharmacy before I  was allowed to go home. By the pharmacy, my tears were involuntarily coming and it remained that way for several hours. By the time I had walked in my front door and tried to get the words out to Housemate, I was on the floor. The guard was truly down.

All the fear I had about this being the worst relapse I would ever have, the relapse after the hit and hope of allograft, came out of me that late afternoon on my hallway floor and then in my lounge  and I have been dealing with fact ever since. 

It’s Failure. I feel like it is one big failure. I need to be absolutely clear on this point, the fault is not my donor’s, My Big Sistee’s. She did everything she should have done and more, my body just failed me.I feel like I failed her and everybody else who was hoping for a happier ending for me. I even feel like I failed the people not wishing me well. Trust me when j say that this is not hyperbole; I  was and remain devasted. 

The weeks that followed were bad. I had slipped deep into a black hole. It was the deepest, darkest pit of a black hole that I tried to keep to myself. I was so embarrassed by this happening once again, dominating lives once again,  that bar a handful of people, I kept all developments to myself. As well as worrying about losing my life, I feared this would be a development that would lead me to losing people. I have to be in bed by 09.00pm for goodness sake and I cancel my plans all the time. 

I had to wait for what felt like weeks, but really it was only a matter of days, to find out how bad it all was. I fixed my thoughts on it spreading, questioning why my pain had increased so dramatically, so quickly, self diagnosing secondary cancers with aplomb, and then plotted what the next steps would be, all without talking to a Medically Trained Person. The 2016 I had envisaged for myself was quickly slipping away from my grasp. 

For the first time since all this started over four years ago, I asked myself whether it was all worth it. I questioned whether I wanted any treatment at all. I didn’t know what my treatment would be. As far as I was concerened, in my darkest thoughts, I was on a one way track to palliative care. To add just that extra bit of sweet icing to the cake, I was also managing a fast deterioration of my bones. The pain was constant and restrictive;  and  included no bending, assistance required getting out of bed and off the toilet and no picnics to name but a few. I still worry about travelling long distances along in case I get too tired. I have once again lost my independence and I didn’t feel like I could share it with anybody. It was too sad.

I couldn’t talk to anybody about this. Perhaps the scariest thing of all were my thoughts about how I would die both naturally and unnaturally, as I tried to decide which option would be best. In those never ending says, all I could see for my life  was the at some point soon, not too far away it would end. Perhaps you can understand why I did not want to blog about this. Counselling, lots of counselling had to come first. 

I have always been realistic when it comes to my treatment, but I dropped my guard when I heard the sweet words of the ‘sweet spot’. There is no way of knowing if I would have handled it all better if I had been better prepared. If, during bouts of down time, I had not allowed myself to day dream about usual 32 year old stuff, maybe not the babies for I am a realist, but I would dream about independence, love (I’m talk under-the-covers-kind) and just living. I thought and planned for a life where I was not just going through the motions of my drug regimen. 

I could not then and still can I not see how I can reconcile this with relapsing. All my peers are moving in one direction, their direction whilst I feel like a am treading water until the day I am told that the Medically Trained People can do no more. There are times when I feel I am  the saddest, poorest spinster, adult child that there ever has been. I know that the more drugs I take the harder it will be to keep hold of my former self. There will be more staring into space as I try to follow a conversation and more Friday night’s out longing for my bed by 7.30pm, afraid to tell my friends that I am struggling to hear what they are saying.

All the time I was fighting the peak of battle in my head, I was being poked and prodded and then waiting for the Medical Trained People to give me the low down. To be precise, give Mamma Jones or Housemate the lowdown; I was in no fit state to hear it myself. There was too much waiting. I was in what can only politely be described as a heightened sense of anxiety. Looking back, it is a wonder I held it together as well as I did. Potentially, I thought that each test would show  that I was on a priority boarding ticket to the kicked bucket, but alas, that was not the case. My biopsy result did not have any active cancel cells in it, which even my brain worked out was better news than cancer being present. My scan did show new disease in my pelvis, both hips, both arms, both shoulder blades my ribs and in my cervical spine, but as far as I know, there was nothing requiring urgent attention. I have been told to be very careful, which means no lifting, very limited walking and no picnics. I could add more to the list, but I conscious of my word count. Just imagine an even bigger loss of independence.

I mean no disrespect when I say that the only  good thing to come from all of this is my transfer back to UCLH. The reason for the transfer is related to drug funding. One should never underestimate the benefit of being able to email a Medically Trained Person and have them respond to you and make you feel worthwhile. I feel safe at UCLH. I emailed the team at UCLH to inform them of my relapse and do you know how long it was before they had phoned me to see if I was coping? 15 minutes. That makes all the difference to me (KEEP OUR NHS ❤️!).

We now quickly and smoothly enter the next phase in my treatment. I like to call it the brain altering, stomach churning, sick phase or to put it more simply, The Drug Phrase. I have limited say on my treatment and I am happy with this. I trust my Doctors to prescribe me the right course of treatment. That is not to say that they have not been  without their teething problems. Did I mention a propensity to vomit? 

I am currently on a course of oral chemotherapy supported by a four weekly dose of Zometa for my bones. I am on a daily tablet of Revlimid, a weekly tablet called Ixazomib, which is basically an oral form of the Cilit Bang I was on in 2013-14, all washed down a healthy dose of Dexamethasone or steroids to you and me. I had increased my MST to 120mg twice a day to manage the pain, but became so constipated, I could not eat and the side effects became worse than the pain itself. Got it? With my supporting meds included, I am currently on between 24-40 pills a day. My first cycle was intolerable. I got into bed on a Monday and walked out of it a fortnight later and 8kg lighter. The following cycle was easier to bear, but nothing can remove fatigue as the unpredictable ruler of my life.

For the unitiated reader, the fatigue I have with chemotherapy goes far and beyond me feeling a little tired. At it’s worst, I cannot move, I cannot sleep or I oversleep, I fall asleep with the cooker on, showering takes two hours due to rests breaks and I have no capacity for a challenge. A slight problem to you, is a huge, gigantic issue for me. I once earned a fairly respectable BA and last week, I spent at least 10 hours fretting about how I would zip up a dress in a hotel. As a consequence I increasingly find myself going from docile to dogged in a matter of seconds. My fatigue gives me anywhere from 30 minutes to four hours of ‘good hours a day before I have to crawl back on my bed or the sofa. The beautiful part is that I cannot predict when or where it is going to hit.

I could go on and on about my recent experiences and do not worry, I will. I have now brown the seal. I already have a fairly detailed analysis of my bowel movement coming your way soon. For now however, I will end this blog. 

I will however say this, the day I started my treatment, the first day I took my new regimen I had no doubt in my head that I was going the right thing.  There was no doubt. I felt empowered. If I have taken one thing away this last four years it is that my illness is not just about me. I do not know what the future holds, but I know that I am not yet ready to let things happen without me. There will be days when I will doubt this, the feelings of ‘woe is me’ are inevitable and healthy. For me, right now, I am glad I was just given had the opportunity to regurgitate last night’s dinner. I am glad that I am likely to spend all day in bed feeling like I have been hit over the head with a sack of potatoes. I’m not glad about all of this because nothing remotely fun is going to happen with my day. I am glad because at some point in my near future, I will be able to do something worthwhile and right now, that is the only thing I can ask for.

EJB x

P.S. For all those myeloma sufferers out there; this works for me. This is my story. Please do not feel like I am telling you how to behave and do. You follow your path.

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Man Flu

“Post transplant, you’ll have a weakened immune system”

😷

Quick! Live in a bubble to protect the weakened immune system. The thing with a weakened immune system, even when I am told that my blood counts are misbehaving,  I cannot see or feel any evidence of supposed misbehaviour. My knee bone is connected to my thigh bone, but how is my immune system connected to the stranger who coughed as I walked past them last week? I can feel my back pain, Graft Vs Host Disease and my daily bouts of nausea. I can care about those things because I can see how it all connects in the world of My Myeloma. I take a pill and the pain reduces or if I walk too far, the pain increases. What makes one person with a sniffle the epitome of mortal danger when a person with a passing cough is a mere annoyance? 

A weakened immune system means I am more likely to catch bugs and sneezes than a healthy person. I apologise for stating the obvious, but sometimes, I need the reminder. It also means that once I catch a disease, it takes much longer than I would wish and expect for my body to fight it. An added disadvantage of getting one of these spread diseases is that my body might not even be inclined to fight it. Instead, it might just welcome a few other dirty friends into my cosy camp of a body and then I’ll be stuck spending the next few weeks being reminded that there is a reason I am prescribed two inhalers.

Regarding my immune system, I might not give it too much attention, but I do what I am told. I do not go to public swimming pools and lick the tiled surfaces and I will not eat without washing my hands. I avoid public transport during rush hour and I avoid touching people if I know they are feeling unwell. That said,  my concessions to my immunosuppression has their limits. I am sensible yes, but I refuse to walk round with a surgical mask and gloves on.   
My theory on this subject is that exposure to some germs is good for my repertoire.  Also, I want to live a reasonable life and living in constant fear of the common cold is  not normal, and seriously, how dangerous can a stranger’s cough be? 

The answer to that question is, of course is ‘quite dangerous’. I have discovered this the hard way. To my embarrassment and severe frustration, I have recently discovered that despite not being able to feel it, smell it or even notice it, my immune system can bring my life to a standstill. What started off as a cold, has brought my life to a standstill. 

Approximately 21 days ago, I developed a light sniffle and a sore throat. Two days after that, I experienced a few days of sickness and diarrhoea. The latter are not out of my ordinary, so I assumed it would pass soon enough. A fortnight ago, with my bowel seemingly back to normal, I spent my weekend suffering from lethargy, a loss of appetite and what appeared to be a throat full of knives. Every day, I would convince myself that I was improving. 

After 10 days of feeling slightly rotten and once again, spending too much time in bed,  I thought I best inform the Medically Trained People. The symptoms I had, could have been an infection or Graft vs Host Disease, so I thought it was about time I was sensible and got a second opinion. I loathed the idea of a second opinion. If I did not have myeloma and if I had not had three transplants, I could have just moaned about feeling poorly until I did not. Maybe I could have talked my friends through the varying colours of my sputum on Facebook. I would not have had to go to the hospital for tests…

The following day however, I did just that and took myself to St Bartholomew’s Hospital for tests, because I do have myeloma. Upon arrival,  I christened the building with some red tinged vomit and was informed I had a temperature of  38.5. I was poked, prodded, x-rayed and I was told that I was going to have to be admitted and given intravenous antibiotics as a precaution. I thought it was all a complete overreaction, so I bartered with them. I got the Medically Trained People to let me go home, after I had some fluids and antibiotics, and all but pinky swore that I would come back over the weekend if it got worse. I promised them that I was a very sensible person and I was most definitely capable of looking after myself…

… It turns out, I am a liar.

That Friday evening, I got home shortly after 18.00hrs, climbed into my pyjamas and then my bed and I did not get out again until Monday morning. The only times I did venture out of my pit was to run to my bathroom and produce some vomit that contained blood. I drank and ate nothing. On the Saturday, the hospital called and told me one of my tests had come back and I had Influenza B. Proper flu. As I had the ‘official’ flu, I had to come in the next day to collect some medication. Sunday morning came and I could not get out of bed. Housemate said it was pathetic. I did not need him to tell me I was being pathetic. I really could not get out of bed. Who knew the flu could completely floor me? I have had transplants, I should have been made of sterner stuff than that. 

It’s just so ordinary.

😷

By the Monday morning, I had drunk less than a litre of water since Friday. I was groaning. Literally groaning. What had started out as something small, something I did not want to make a fuss over, had somehow become something that required actual, real life, medical attention. Seeing that simply willing myself to improve was no longer working, with Housemate in tow, I made my way back to St Bart’s. I had an appointment I failed to brush my hair for, let alone source lipstick for. I did not not look my best. The lack of hydration had caused my lips to crack and the inside of my mouth to bleed.

To cut a short story even longer, we went on to see a Medically Trained Person who looked at me and simply said “oh, Emma” and promptly told me that I was going to be admitted. I had lost over a stone in a fortnight. I was transferred to a private room on a ward. And in that room I stayed for four days. I vomited more blood, I had several bags of fluids and I rediscovered the joy of Mackie’s vanilla ice cream after the anti sickness tablets had kicked in.

  
Apparently, it was necessary for me to be kept in isolation. I did not see a member of staff who was not wearing a surgical mask for the length of my stay. The flu had not only taken me down, it had heightened all my GVHD symptoms. It meant more drugs, more waiting and more lost days. Wasted time, spent alone in a hospital bed. Bar an hour a day, my only company was my laptop and the faceless staff who interrupted my sleep.

I have been out of hospital for five days now, and I am still a pathetic little weakling. I am still embarrassed and angry that I have a body that required hospital admittance for the flu. I resent the fact that even though I am out of hospital, I have been told it is going to take a few more weeks for the infection to go. 

To put my frustration into some sort of perspective, Big Sister experienced a similar illness to me at the same time. She was coughing and sleeping and generally feeling unwell. Sound familiar? Like most otherwise healthy people, she went to her GP and was prescribed a course of antibiotics and was sent on her merry way. I’m jealous that that was her experience compared to mine. In addition to my hospital stay, I required two chest x-Rays, daily blood tests, multiple bags of fluids, nasal and oral swabs, two different types of antibiotics, an inhaler, thrice daily nebulisers, steroids and ice cubes.

😷

It’s experience right? Hospitalisation for the flu will one day be a funny anecdote I can tell my friends’ kids about. When I tell it, I’ll leave out the part/s about me feeling sorry for myself that at the age of 31, I am considered a vulnerable person who cannot tend to herself. In the future, my story will also include something about being lucky that the NHS cared for me and, with acknowledgment to my stupid weakened immune system, an awareness that it could have been much worse. There are many people, far braver than I, fighting seemingly unrelated side effects of cancer as I type and you read. 

We might be lucky enough to get a remission, but, having ‘cancer’ never reallygoes away. 

😷

EJB x

Please note that real flu and a cold/other bugs are very different beasts. The memory is raw, liken  them in my presence at your own risk… My cousin said they always say the difference between real flu and a cold is whether you would get up to pick up a £50 note! Take that with you.

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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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