Tag Archives: st bart’s

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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Out Of Sorts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This doubt is not me. 

This anxiety is not me.

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

I need some structure. 

EJB x 

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Day 1, Take 2 – Part II

A Timeline:

07:00hrs – I wake up, once again, I have been waking up on and off for a few hours. At 07:00hrs, my bladder told me that I could not lie in bed anymore. 

07.05hrs – I returned to my bed and took my morning dose of medication including the one that sounds like a mountain retreat. I then dilly dally. 

07.30hrs – Despite my hairdresser’s recommendation to wash my hair every four days, I decide that a wash is completely necessary and I sneak into the shower before Housemate emerges from his room, so I cannot be told off for making him late for work. I’m sure you can work out what happens next, but for the sake of accuracy, I put on the first of my day’s outfits once I get out of the shower. 

08.10hrs – This is an approximation, but Housemate leaves for work. In the time before his departure, I change my outfit once and ask for his expert opinion. He does not offer an expert opinion, so I change out of the extravagant kimono and put a black shirt on over my jeans and body. I thought subtle and comfortable was probably for the best.

08.25hrs – Ocado arrive and I spend the next 15 minutes struggling to get my goods in to the fridge. Said fridge looks magical when I am done, I almost feel like a grown up. 

08.40hrs – I cook my porridge. I then eat my porridge. At this point, I think I have plenty of time and I am convinced I am going to leave as planned at 09.15hrs, to ensure I arrive at the hospital by 10.00hrs. I then decide to watch an episode of TOWIE. Forgive me for that.

09.15hrs – I am not ready to leave on time, but I have managed to locate a cardigan that has been missing for two days.

09.30hrs – I book my Uber, but somehow find the time to take a photo of Bruce.


09.46hrs – I find the time en route to share this wholly necessary piece of information.


09.55hrs – I arrive at the hospital, make my way up to the 7th floor and check in.

10.10hrs – A Medically Trained Person comes to collect me, takes me through to Bay 5 and shows me to my bed to the day. On my arrival, I unpack my bag. I plug in both my chargers, unpack my laptop, kindle and iPad, find a spot for EMan and hang up my cardigan and handbag. I also pull a chair over to create an extra table. I did all of this completely obvious to the fact that the nurse was waiting to do my observations. Despite knowing that I had hours to make myself comfortable, I just wanted to make myself at home right away. I needed order. I didn’t just want to make myself at home by the way…


The first of several obs were then taken. Do not worry, I am not going to share with you every time my obs were taken. That’s mainly because I did not keep track of how many times my obs were done. Just know that they were done on the hour, and then before and after each infusion or change in speed of said infusion. That is a lot of times for somebody to take my temperature, pulse, blood pressure and oxygen. 

10.45hrs – In goes the cannula. My concerted attempt to drink as much liquid as possible all morning, proved worthwhile. The cannula went in on the second attempt on the top of my right hand. Don’t worry, I did not take a photograph of this. I know some people can be squeamish around needles; thankfully, I am not one of them. 

11.23hrs – The pre drugs start. 


They consisted of one bag of Piriton followed by a flush, then an 8mg bag of Dexamethosone followed by a flush. Sometime after that, I then get a 12mg bag of Dexamthosone on the instruction from the pharmacy. Once again, this is followed by a flush. 

This all takes some time and delays the start of the main attraction.

12.43hrsIt starts!


Look at the size of that bag! To begin with, due to the possible side effects, the Daratumumab is given to me very slowly. It speeds up gradually throughout the day, but not for the first two hours.

13.30hrs – Lunch has arrived and I start to feel nauseous. I am also dizzy. I’m trying to fight it, but aware of the warnings that I should report any changes, I tell the Medically Trained People. They do my obs.

13.49hrs – By now, they have discovered that my oxygen is low, and I am given oxygen.


15.00hrs – My visitor leaves me and I am once again left to my own devices. Prior to her leaving, she is kind enough to collect my drugs from the pharmacy, which required three trips downstairs. The first trip was to put in the prescription, the second was to collect said prescription and the third was to pick up my morphine which she was not allowed to collect without ID.  Whilst she was gone, I took advantage of the bed next to me being empty. 


I spent the rest of the afternoon feeling exceptionally hungry. I also started to watch the bag, willing it to empty. 

16.30hrs – the Daratumumab was turned up to maximum speed; with still many, many hours to go. My Medically Trained Person reminded me that I had my laptop with tv programmes on to keep me occupied. I repeatedly promised to turn it on. 

17:00hrs – I am given more drugs to take home. The previous prescription collected by my friend was for my pain management, this prescription contained support medication for the trail. It included Dexamethosone tablets, which I am required to take for the two days after each infusion. 

17.30hrs – By this time, I had turned on my laptop, I really wasn’t paying any attention to it as you may be able to tell from the photograph below.


I now lose track of how many times I restart said programme. I was tired and hungry. All so very tired and hungry. Hunger was controlling my mind. 

18.31hrs – By this point, all the other patients are gone and I am still hungry. I give in to the hunger and do something I would not usually do. 


19.30hrs – More obs are done prior to this, but by this point, the Daratumumab infusion is  over. Finally. The drugs are inside me and there is nothing else to be done. Well, there are things to be done. The Medically Trained Person has things to record, more fluids to give me and obs to take. On a personally level,  I have to pee again. At this time, the sodium docusate I take every day has also decided to work. When sodium docusate works, I cannot deny it. As a result, I spend the next 15 minutes in the toilet. 

20.00hrs – The last obs are taken, I have packed up all my belongings and I am ready to go. The Medically Trained Person asks me how I feel and I respond with ‘tired’. She admits that I do look tired but complements me on the fact that my lipstick is still on. 

I leave, against medical wishes, but I feel confident that nothing is going to go wrong in the next 24 hours (or in the days after that).

20.06hrs – I get into my Uber and for the next 20 minutes, I have to listen to complete and utter drivel from the mouth of the driver. In then end, I explain that I cannot talk to him anymore because I have been having cancer treatment for the last 10 hours. He continues to talk. He gets 2 stars.

20.28hrs – I am Home!


I greet my lads and put my dinner on. I then get straight into my pyjamas. I also investigate the bags under my eyes, to see if I do truly look tired. I can confirm that I looked tired.


21:00hrs – I eat. In bed. I then take my medication.

02.05hrs – I wake up to go to the toilet and find my TV is still on. I appear to have fallen asleep during Masterchef. I turn the TV off and fall immediately back to sleep. 

And that my friends and people of the internet, was my day. You can tell that I became increasingly tired as the day progressed, as I stopped recording my day as accurately as I would have liked. I think I still show that it was an incredibly long day.

Until next time…

EJB x

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Day One, Take 2 – Part I

I woke up on Thursday morning in exactly the same way I woke up the previous day. I did everything I did on the Wednesday morning, right down to eating porridge for breakfast. – Quick interlude, I just let the dog out for a pee and it reminded me that there was a difference on Thursday morning, I had a supermarket delivery arrive between 08.00-09.00. It was due at a more reasonable time, but I had to change it because my treatment was postponed. You might think that this is an unnessary detail, but having a full fridge brings me so much joy. Anyway, back to my story –  If I was following my superstitious mind, I would have shaken the routine up a bit, but for reasons unknown, my brain had decided to behave; I was calm. I did not feel that nervous. I might have had a tiny, tiny bit of trepidation somewhere in my gut, but my predominant feeling was quite optimism. I just woke up wanting to get on with everything. In my flat that morning, I was more of a robot. That said, I did change my outfit twice and I asked Housemate whether I looked okay on both occasions and he responded with a sterotypical boy answer of ‘I don’t know’. I’m not sure why I was getting dressed up for the Daratumumab, I just needed to feel confident. Or at least fool myself that I felt  confident. I might have even fooled all of you.

Once again I felt the need to share my day on Instagram, it had two benefits. As well as sharing with strangers the glamourous and enviable life I lead, it also kept track of the day’s timeline, so I didn’t have to remember them for this blog. I’m thankful for that because it ended up being a long long day at the hospital. I say it ‘ended up’ being a long day, I always knew it was going to be a long day, I just didn’t compute the reality of it. 

If you count my waking hours it was an even longer day.  In terms of hours out of my house, I was out for 11 hours, and in the hospital for 10 of those. I didn’t even do rfar for my friends’ weddings. I woke up at 07.00 and past out at 22.30, so I was awake for 15.5 hours. I’m not normally awake for 15.5 hours and I am even more surprised that I managed to stay awake that long after having some IV Piriton. That would usually send me straight to sleep, but then it was followed by 20mg of Dexamethasone, so that probably counteracted the immediate need to snooze.

As you may have worked out by now, I got the Daratumumab. Pause for your applause. Despite having an hour and 20 minutes of pre meds before the big  infusion, I did, when I was in the seat for a brief moment begin to doubt that I would ever see the drug. Even when the Medically Trained Person told me that pharmacy had called her and said it was ready, I still had  doubts. Completely irrational doubts, but they were doubts all the same. When I eventually saw the bag and confirmed my name and date of birth I was excited. Internally, it was an internal excitement. When the bag was eventually hooked up to me, I sighed with relief. It was a theatrical sigh, but if was the only way I could think at the time, of commemorating the occasion. I was officially on the trial, and apart from the Medically Trained People, I was the only person to see it. 

I should add at this point that Mamma Jones felt (and probably still feels) terrible about not being able to accompany her baby girl for her big day of treatment. Mamma Jones just couldn’t get the day off of work, which I understood completely. Mamma Jones on the other hand felt guilty. I think she must have felt the guilt a lot because she was very apologetic on the Wednesday about not being able to come and then she phoned my twice on the Thursday to say she could come after work if I needed her.  People have to work, and I knew that my Mum would have been there for my first infusion if she could have been. It’s just one of those things, we planned family cover for the Wednesday, but as you know things changed at short notice.

I explained in my previous blog that Big Sister could not come to London for the big day, take two. The lack of family members present did have my two main female family members in a spin. Fortunately for me, there actually exists people who live in London who care about me, so when I found out I was going to be family-less, I contacted the London family and immediately I had a volunteer. I had a simple task for them, and that was, in addition to entertaining me for a period of the day, to bring me lunch. I had seen the hospital lunch the previous day and decided that just would not do. If I was going to be in the hospital all day, I needed to eat well. If in the process of bringing me lunch, my friend wanted to stay and talk with me a bit, then that was okay too. I understand that this offered my mother some reassurance. 

Whilst we are on the subject of food, I arrived at the hospital with a handful of cherry tomatoes, an apple and a flapjack. The flapjack was for emergencies. My friend was arriving at one, and in addition to my actually lunch of sushi (please do not complain to me about eating raw fish, my counts were fine, and I am adult) and a bowl of miso soup, I asked her to bring a punnet of tomatoes because the tomatoes I packed had disappeared into my mouth  by the time my infusion started. Despite a brief feeling of nausea, timed perfectly for the arrival of my food, I spent the rest of the day absolutely ravenous. It was fortunate for my waistline that I was attached to a drip and under such stringent monitoring, because I would have gone on a search for more food otherwise. I probably would have had one of the free sandwiches if they had done a late afternoon visit, such was my irrational hunger. As my stocks dwindled to nothing, I even had to lower myself to a custard cream and I hate a custard cream. You do not need to know, correction, I am unwilling to tell you what I had to eat when I got home. I need to maintain an air of elegant mystery. Next Thursday, I am going to have to rectify the hospital food situation. I am going to need a bigger bag. 

I had heard a lot about the reactions I could have on Daratumumab, which is one of the reason why I had to be monitored so closely. The other reason, I guess, is because it is a trial requirement. I know I started this paragraph talking about reactions, but I think I should just add here that I think I won the clinical trial nurse jackpot, I mean, if there was such a thing. My nurse was probably with me for 4-5 hours of my 10 hour day, and the biggest complement I could give was that I enjoyed her company. I also liked that she brought me drinks and made toilet jokes. Anyway, after yet another brief interlude to the narrative, I can confirm that I experienced no major side effects. 

If I had experienced any major side effects, I can confirm that the hospital was well prepared for them. They even had Mamma Jones and Big Sister’s contact numbers so they could keep them up to date if I became indisposed. I also had the nurses’ bell to hand and my Medically Trained Person’s phone number should anything change. I was well covered.

The only issues I had was some light dizziness lasting about half an hour shortly after the infusion started, which coincided with some nausea, which unfortunately coincided with the arrival of my lunch. My oxygen also went down, so I got to have extra oxygen shoved up my nose for good measure. As soon as I had the oxygen, the nausea and dizziness past and I was able to eat my feast, which if I am being perfectly honest, is what I cared about the most. 

Although I was there, on the same bed for hours, I must admit that the time until about 17.00 went by so quickly. From then on, it went slowly, but this tied in with all the patients in my bay going home, the cleaners cleaning around me and the sun go down. In the last three hours, it felt very quiet and lonely in that room, which is strange because I had spent most of the day mentally lambasting the other patients for making noise, especially the one, who at one point had six very loud visitors. I missed them all once they were gone.

I did not start watching my TV programmes until about 18.00 and even then, I only watched half an hour of one show, that I kept having to rewind because I was distracted by my phones or simply because I was tired and struggling to concentrate. I had to postpone Line of Duty because I was beginning to feel very tired and I felt that I would be unable to give it the attention it deserves. I will have to review my viewing choices before next week. Maybe Disney would be more suitable.

I really do not know how I managed to fill 10 hours of my day, when all I did was sit on a bed. A lot of my time was spent on my phone. I was inundated with messages from my friends and calls from my family, which when added to the two hour visit from a real life human friend meant that I felt well and truly supported. I received my weekly call from my UCLH CNS, a Medically Trained Person who always, I feel, goes above and beyond what is required from her when it comes to supporting me and for that, I am most grateful. I also wrote one of these, which takes more time to complete than you can imagine. On a more practical level, I was also very thankful for packing a phone charger.

The infusion bag was huge, and prior to receiving that, I received a bag of antihistamine, two bags of Dexamethosome, because the pharmacy changed my dose halfway through the first infusion (thus adding a 30 minute delay to my day). Each bag of drugs was followed by a flush. I should have, but I did not record the size of the Daratumumab bag, but just trust me when I say it contained a lot of liquid. On top of the liquid going through my veins, was the liquid going through my bladder. The Medically Trained People kept offering me more refills of water and top ups to my herbal tea. Plus, I had a clear soup for lunch. All this means one thing, and one thing only. I needed to go to the toilet a lot.

Going to the toilet whilst attached to an drip with a cannula in your dominant hand is no easy feat. It is especially difficult if you have aching bones and struggle to get on and off anything. The first time I went, I did not realise that the line was long enough for me to get off the left hand side of the bed, so I had to lift my legs, one by one and squeeze them between a gap mid chair. Such gymnastics was necessary because the table was attached to the bed, cutting the right hand side of the bed in half with a metal pole. Thank goodness two of my curtains were closed when I did this. On my return, I realised I could get on the bed from the left hand side, negating the need to negotiate the pole and more crucially, negating the need to look stupid.

The trial dictates that patients are monitored for two hours post infusion. My infusion ended at 19.00 hrs and as I had had no major side effects, I asked if I could leave at 20.00hrs. This was against medical recommendation, but I was hungry and tired, and the Medically Trained Person said she would not have left me leave early if she thought anything further was going to happen. And so, I left at 20.00hrs, got in an Uber and instructed Housemate to put the oven on, so I could heat my ready made cottage pie, which had arrived that morning.

There isn’t much more to tell you. I was absolutely exhausted yesterday and I do not know if this is because I was out of the flat for so long or because of the medication. I imagine it was a combination of the two. I was the sort of tired where every activity felt like a marathon. I was mortified to discover that I had incorrectly spelt ‘belatedly’ in a birthday card, by brain just wasn’t working properly.  Needless to say it was a flat day. I imagine that today too, is going to be a flat day. 
The reassuring thing, at least I find it reassuring, is that although I am still tired from my treatment, I know that I get to do it all over again next week. For those of you who are interested, I have to go in for tests next Wednesday morning, ahead of my treatment on Thursday. I imagine after a few more doses, my excitement will fade and Daratumumab, like every other drug I have taken will become routine. I just hope, with ever ounce (and there are a lot of them) of my being, that this treatment and this investment does what we hope it will do. 

EJB x

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The Glitch

On Wednesday morning, I woke in childlike excitement ahead of what was my first day on the Daratumumab trial. It’s was Day 1. Finally Day 1. Before waking up properly at 07.15, which is virtually unheard of these days, I woke up multiple times from 05.00. I just wanted to get to the hospital and see the infusion going into my arm. The night before, I had anxiously packed my day bag, even going as far as washing my backpack, so everything was truly ready to go. The backback was full of every possible form of entertainment I could wish to get up to as well as some I would not; I had even purchased a dual headphone jack so that Big Sister and I could spend the time catching up with Line of Duty. So as not as to tempt fate, I had also packed pyjamas and clean knickers in the event of me having to stay in. I was good to go. 

Once up, I made myself a proper breakfast to start such a big day right, which had to  fit in with my morning drug routine of waiting an hour before eating and then once my stomach is full, taking another hefty batch of pills. Were you aware that I had to do that everyday? I also took something called Montelukast, which sounds more like a mountain resort than a drug to relieve allergic reactions, perhaps the patent holders were just being inventive that day. I also did the things that everybody does before leaving the house of a morning, and it seems rather boring to describe them to you here; just use your imagination and know that once I smelt so fresh and so clean, clean and was presentable, I covered my lips in lipstick. 
The only downside of being out all day, is seeing the disgusted look upon the dog’s face when he realised I was not getting back into bed, but this is just something he was going to have to live with. I gave him a guilt treat before smothering him in kisses,  and struggling into my Uber with my extremely heavy backpack and a tightly closed bottle filled with 24 hours of my urine. And off I went to Bart’s. 
I was so excited, and also aware that there would be many occasions where I would be bored throughout the day, that I decided to share said excitement on Instagram Stories.

Exhibit 1: As you can see, the excitement was undeniable and not in the least bit egocentric .

Exhibit 2: Truly this was not in the least bit designed to get people’s attentions and to make them think of me as they go about their respective days. 

So, I walked through those doors, put my body and it’s tapping foot in a seat and waited. I had already told the Medically Trained Person in charge of my care that I was running a whole 8 minutes late, so I waited patiently for her. By that time, Big Sister was on the train from Peterborough and would be joining me by my bed at approximately 11.30.  

To fast forward a bit, the next Story I uploaded, was as follows:


Exhibit C: Yep, it was true instead of arriving home after 20.00, I arrived home at 14.00. Bruce was excited; I was not.

I suppose I have to rewind to the waiting room. My nurse came out to see me and very apolegetically explained that there had been a problem on the computer system for the trial and said computer system was preventing the hospital’s pharmacy from making and issuing the Daratumumab. It was a Glitch. A very annoying glitch. Due to the length of time it takes to give the Daratumumab via infusion, if the glitch could not be sorted by 11.45, I was going home. As have already seen, it is no big reveal to say I ended up going home with my head bowed in disappointment.

I’m not entirely sure of the precise reason for the computer glitch, I was assured that everything had been agreed verbally. I was on the trial and the trial sponsors were happy with my addition. The computer was clearly not happy. There are many reasons for this. One could be that the trial had been closed and reopened for me (I did not know that this was the case) and the compute could not compute this. Secondly, somewhere down the line there had been an admin area. Thirdly, it was just a plain old computer problem that nobody will ever get to the bottom of.

Sorting this problem was time sensitive, which meant the biggest issue the Medically Trained People had on Wednesday morning was the fact the computer glitch originated in the good old US of A. At that time of the morning in UK, there wasn’t many people or should that be the right people to help fix the problem by our deadline in the US. So, despite Big Sister arriving and confirming that she could not come the following day, the kind people at St Bartholomew’s were left with no other option but to send me home when the clock turned 11.45. 

To say I was disappointed was an understatement. Since hearing of the trial and knowing the stakes it has for me, I have been loathe to talk about it too much because I did not want to jinx it. I have no idea when I became superstitious, but it was probably some point around August 2012 when I was diagnosed. The reason I was late arriving to the hospital was because I suddenly decided I need to wear my Granny’s old necklace that says ‘luck’ in Cantonese. By the time we walked out of the hospital, I did realise the irony of my necklace.

Outwardly fine, but inwardly panicking; I asked if this meant there was any chance of me being removed from the trial and I was told ‘absolutely not, I was on the trial’. With that Big Sister felt much better and I felt marginally better. I am not sure if she was trying to calm me or if she genuinely believed it, but Big Sister remained poised and not remotely angry the whole time. It may be a result of her NHS training but she just said that these things happen and she hoped that the treatment could go ahead as planned on Thursday. That my friends, is a calming influence. When I initially called my sister on the train to explain the problem, she said “oh well, it would still be nice to me [blank] (blank is my trial nurse)”. 

Inevitably, at 11.45 we left the 7th floor waiting room and made our way to pharmacy to get some more Montelukast for that evening and the next day. Talking the drug was dependent on me getting a call later that day saying the treatment would go ahead. Once the pharmacy dispensed it, Big Sister and I treated ourselves to some lunch so her day was not a total waste, and then we parted ways. She was heading back to Peterborough and I to my flat and to the dog.

It was when I got back to the flat, alone, clutching my phone with the ringer on the loudest setting, that my irrational panic set in. The silence made my mind wander. Wander is to soft a word, my mind galloped.  I think my concerns were best summed up with this piece of marginally frantic primary evidence:


Exhibit 4 – Irrational panic 

So, yes. On Wednesday afternoon instead of feeling tired, wanting to go home to my own bed, I was willing to feel tired on a disinfected bed. I was also doing mind gymnastics, as shown above. In my defence, when you have had received the amount of bad news I have received, these irrational outbursts can be expected. I was very aware that it was irrational, and I received sympathy and logic from pretty much everybody I spoke to or by text. I didn’t need to be told I was being stupid, because I was telling myself that already. I just needed a gentle stroking, so to speak, not an actual stroking though I might have found that relaxing too. 

At around 16.00 hours my phone rang. I don’t think I gave it the chance to go beyond one full ring but it rang. It was confirmation that the computer glitch had not been sorted, but the folks at St Bart’s had made it very clear to the folks somewhere in the US of A, that I had to start my treatment as soon as possible. Something they agreed to; the human override. 

So, I was to start my Thursday in the same way I started Wednesday. Montelukast, other pills, shower, clothes, breakfast, lipstick, heavy bag, an Uber, and arrival at the hospital by 10.00. The only difference was that this time, I would be doing it without a family member, much to their disappointment. Mamma Jones even phoned me to say she felt guilty, I told her not to be so ridiculous. I had arranged an alternate to bring me lunch and I reassured her that I would be fine. As soon as The treatment started I would be fine.

With slightly less confidence I fell asleep on Wednesday. I still managed to feel some excitement that I would eventually, after what felt like months of waiting, see the trial start and witness the drug I really struggle to pronounce go into my arm. I have small dreams and that was one of them.

What happened yesterday is for another blog, but find some comfort in the fact that I was in the hospital for 10 hours yesterday and I feel extremely tired today. This blog only comes so early courtesy of my need to take some Dexamethosome after my breakfast, and I cannot have either of those things without an hour wait.

EJB x

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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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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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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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Bon Anniversaire

Today marks three years since Myeloma officially came into my life. It’s three years since that junior doctor cried as she sat at the foot of my bed whilst she broke the bad news to my family and me. Is it an anniversary worth celebrating? No. It is however a significant milestone in my life and one which marked for better and mostly worse, a permanent change in the life of Miss Emma Jane Jones. Put it another way, the 17 August 2012 was life changing. And it wasn’t only life changing for me.

Since that date, I have been given a whole set of new dates to remember, celebrate and dwell. My first transplant on the 17 July 2013 for example, but that failed, so it was not quite the rebirth I advocated at the time. Then there was my second auto on 1 April 2015 and then my Allo on 23 July 2015. Only time will tell if the latter dates are ones worthy of celebration or just dates of mild significance. Mind you, the date my DNA changed will always be fairly significant won’t it?

For me though, this anniversary is the Big One. It’s the one that started everything off and although I wasn’t given the formal diagnosis until three days later, the 17 August will always be the day I got myeloma. The day I got myeloma. A ridiculous notion really, because my vertebrae did not fracture on that date, and the paraprotein did not suddenly appear in my blood on the 17 August three years ago. It is the date I knew why these things were changing in my body. It is much like my birthday, except with far more adolescent longing. On this date, I can feel melancholy and I can feel slightly sorry for myself than usual. I can, if that way inclined, try and recall the best and the worst of my three years, the highs and lows of each of 1095 days, I have fought through. And it is a fight, people may be trying to soften the vocabulary, but for me, I see this as a fight, a really, really big one.

Of course, you can see and feel the date differently, which I occasionally do. For as sad as my diagnosis was and as much as I do not want to have myeloma, the 17 August is also the anniversary of me growing up. My Myeloma has forced me to do many things I have not wished to do and experience,  but it also forced me to become an adult. Not the adult I once envisaged with a mortgage, children and a shed; the sort I am jealous of now. I am an adult who is forced to sponge of the State and her parents, but I became an adult nevertheless. I look at my contemporaries and sometimes I think to myself, ‘how would you have managed it?’ It’s a question without an answer, and it is a question I would not wish upon anybody ever having to find the answer to. I do not like myself for thinking it, but even when I think about that question in relation to me, I question how I have managed it all, and I am proud of myself. Even at the moment, when I seem to question daily my strength to continue with my allo treatment, I am proud of myself for coping. I think us myeloma sufferers deserve far more kudos for merely coping. I bet you any amount of money, because I do not have any money to make any sort of meaningful bet, that three years ago, I would have thrown anybody out of my cubicle if they dared to say that the 17 August would be a date that I would eventually be proud of. 

Even though my pride only accounts for some of my feeling towards this day. My diagnosis was the making of me. 

It was indeed a Big Day. 

I could do what I have done in previous years and list all the treatment I have endured in such a short amount of time. I could go through the physical side effects I have experienced many times over and have been forced to become accustomed to. I could even talk about how long I statistically have left in this world,  but I will not be doing any of that today.  This year feels different to me. Maybe it is because I am no longer at UCH and things seem temporary at St Bart’s. Though, really My Myeloma feels more than just the facts and the figures. Since my last anniversary, I feel like so much has changed; I do not know if it is a tangible change or just a non-drug related feeling in my gut.

Perhaps, prior to this last year, when I embarked on a nine month treatment programme followed by two SCT, I believed nothing had really permanently changed. I mean, I knew things had changed, but there was a part of me that still believed that my life could at some point at an unknown time and date, just slot back until place. I know that will not happen now. My 13 months of near constant treatment shown me that.

Until this last year, I also believed that I had a well established Support Network in place. I believed that all the perceived letting down I had experienced in that first year, was the only letting down I was going to experience in My Myeloma journey. My relapse last June corrected that misunderstanding. I feel far more let down post relapse than during any other time during my illness. Make a leaflet about that Myeloma UK, some people, those without myeloma, just cannot handle the fact that myeloma is a cancer that is chronic. That it goes on forever.

It is a strange thing to say, when I feel so well supported and loved now, but I have had to grieve the fact that some people got bored of my cancer and thus they got bored of me. It felt like they had tasted and enjoyed the 11 months of freedom remission had given me, and thought that taking it all on again with another relapse was too difficult a task to take. My stock went down. There were some people who made promises of support and friendship, not always actual promises you understand, but their presence alone throughout the early days of my illness, made me naïve enough to believe there was  something special and enduring in place. A promise of friendship. All I would say of this to anybody else in the same position as me, is, be warned of the glory seeker. When I am stuck in no man’s land, where there is no guaranteed end in sight, and the cancer keeps coming back along with my unpredictable fatigue, and those around me are moving on because they can, people and their promises can disappear. I have seen many of those promises, accompanied by those friendships end up on the proverbial scrap heap. 

It’s made for a difficult year and one where I have had to learn to stand on my own two feet. Fortunately, there is a flip side to this and if my relapse had taught me anything, it was who I could trust to stand side by side with me, as my treatment and their lives continue to develop. It does not always have to be either or, even though I am still prone to bouts of paranoia on this subject. Let’s not kid ourselves, I’m only physically well rounded. 

My relapse showed me that early on in my treatment, I made mistakes. I criticised my friends’ behaviour, in some cases I did so publicly and I regret that now. They were struggling like I was and they showed their struggle differently to how how presented mine. In the last few months, I have seen so much evidence of the support I have during my transplants, that I feel confident that even on my lowest days, I’ll have at least one person willing to pull me through the darkness. We just need to work on how I let people know. 

As it currently all stands, I know that My Support Network is well founded and passionate. It is mine, it is invaluable and I know that it is built on trust, even though I do not get to see its members as much as I would like to and I am pretty certain that is a feeling that works both ways. Rather strangely, or should that be tellingly, My Support Network is made up of people I have known for years either because they are related to me (obviously) or because they have had the good fortune of being my friend long before I knew what myeloma was. It has taken a while and the occasional misunderstanding, but I know who will be there when I need them. Some people will need to be asked for help and others won’t, but that is just the way things have always been and thus, it is the way things should be. I just wish there was more I could personally do to make my friendships equal again. Homemade cards only get me so far. 

Anyway, on the subject of my Support Network, I am making myself blush and as you are not all on anti sickness pills like me, I will put an end to the subject soon, I promise.  I could have just said what I am about to say five paragraphs ago;  My Support Network is irreplaceable. It may be irreplaceable, but crucially, my personal strength and journey through My Myeloma should not be defined and determined by it, and post relapse, when the droppings happened liked flies, I had to accept this the hard way and quickly.

My ability to cope with myeloma, is a much broader achievement than my Support Network. I personally, will always feel isolated by my illness and I have spent three years learning how to cope with this. I do not have all the answers, but I have more than I did last year, so who knows what I will be saying next year? And the year after that? And the year after that? 

Last night, as I was trying to drift off to sleep, I began to worry that with three years of near-constant treatment, there was a possibility  that soon, I might not have the strength to continue fighting should my current treatment fail. My current treatment, which I am nearly halfway though, is not exactly a walk in the park and trust me when I say, I have many a down day. I am fully aware that I will have more down days over the next x days. I will fail to get out of bed a few more times, find myself physically unrecognisable and cry over missing events with my  friends. I worried so much about my occasional thoughts of giving up, that I envisaged quite a different blog to the one you are currently reading. 

I haven’t only experienced treatment, relapse and drugs in my third year of myeloma. In the last year, somebody dear to me lost his fight against myeloma. He became dearer to me, selfishly, with my own diagnosis three years ago. He was somebody who I never saw being remotely negative about the bastard that is myeloma apart from rebranding Velcade, “Cillit Bang”.  I fear negativity is my default position the minute the going gets remotely tough. His eldest daughter also gave me an invaluable crash course in myeloma and continues to offer me considerable patience. Her Dad did not have a sibling donor and thus could not have an Allo SCT, instead  he had two auto SCTs and several other treatments such is the norm for current myeloma treatment on the NHS. He was given velcade and among many of the things, he suffered from steroid insomnia. He did not know it, but he was My Myeloma rock, and the only other person with myeloma I needed to know. My current treatment is the first treatment I have had that he did not have in some incarnation or another. I remind myself that I  feel poorly because I am lucky enough to have a sibling donor, and last week when I couldn’t get out of bed, I thought about him and his family, (and not because I had just watched The Man With The Golden Gun remembering a holiday we had) and I got out of bed. That’s all I really want to say about that. 

Three years after my diagnosis, in the middle of a transplant where I had to sign to say I was aware of all the risks that could happen during it, I am ever aware of my life and the chance of my death. I am also ever aware of the chance of my death being further away than the statistics that I will not talk about, and current literature would suggest. 

It’s been three years of changing and developing treatments and a changing and developing me. I don’t know how to end my acknowledgement of my anniversary, so I am just going to say goodbye and thank you for reading my blogs. I promise they will continue.

EJB x 

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