Category Archives: NHS

Six Weeks

It’s been two months since I last published a blog and let me tell you this, it has been quite the two months. After having this wretched disease for over five years, I thought little would surprise me. Well, I expected the whole looming death part to have a different trajectory to the routine I am used to, but as I said, I expected that to be slightly different. I never considered what the steps will look like getting from the relapse stage , to the end of the line stage. I always assumed it’d be easy but increasingly, I feel I might have been far too optimistic.
Somehow, in five years, I had settled into an uneasy routine with My Myeloma. It’s quite simple really, I would have some sort of treatment, which would work for a bit, then it would fail, then the Medically Trained People would somehow magic up another treatment for me to start, and thus the cycle would start again. 
I had five years of this. Don’t get me wrong, some horrible things happened along the way; it shouldn’t make the list, but losing my hair is still up there in the shitty events. I didn’t really enjoy any of my transplants and I definitely did not enjoy the time I had to spend five days in St Bart’s because I caught Influenza B. On the plus side, I thoroughly appreciated any drug regime that could be taken at home. I had a few of those.
What am I saying, all of that is in the past? If the last two months have taught me anything, and I am still trying to decipher exactly what further lessons I needed to learn by the age of 33 about my cancer, is, that Myeloma is a load of fucking shit that if there were a hell, it should be confined to purgatory trapped under a full, infected bed pan, never to bother nice (even horrible) individuals again. Oh yes, just to keep you up to date, I have also learnt about bed pans recently. And sick bowls. And those cardboard things that collect one’s waste by resting on the loo seat. I know it all.
On 7th September, I returned to UCLH for a clinic appointment. Prior to that I had found out that the trial at St Bart’s was no longer working and I had been experiencing what can only be described as extreme and unbearable pain that I had blamed on doing too much on holiday. The pain itself was predominantly in and around my right rib cage. 
As I had self diagnosed every relapse since 2012, I had spent about a month begging for some imaging. St Bart’s took no action, I would question if the staff knew my name, but thankfully UCLH did know my name and once they had the necessary images, man, did they take action.
I was admitted to UCLH immediately on the 7th September following an appointment, during which my family and I were told we were coming to the end of the line of treatment. Not only that, but there was also something wrong with my neck. I say ‘something’ because I think it took me well over a week to get my head round what a compression on one of the C vertebrae meant. I don’t recommend it. I don’t recommend developing a mass that pushes through your rib cage either, Alien (or at least that’s how I like to picture it) style. It cannot be sugarcoated. I entered that hospital with Mamma Jones and Big Sister in a bad way. 

And that bad way only worsened over the next six, that’s right, SIX weeks…

I don’t even know where to start. If you are independent, like to toilet alone and enjoy walking around, I’d say what followed would be your worst nightmare. It was mine. 

You may have deduced that not all was or is well with my spine. Due to the compression and the location of it, I arrived at my bed to be told that I was no longer permitted to walk. As in, no walking at all. Not only was I not allowed to walk but if I wanted or needed to be moved in my bed, I would have to be rolled by four Medically Trained People. My head and neck, could not be elevated anymore than 30 degrees. Three weeks later, this changed to 40 degrees and the news that I could roll myself, but by this point, the damage to my ego had already been done. Not to mention the damage to my legs for not walking for three weeks.
Despite being in denial about it, shitting is a necessity that eventually cannot be avoided. The day I could not avoid it was Day 11 in hospital when there were only male nurses available. I’m a 21st Century Woman, so I went ahead and let the team of four roll me onto a bed pan. I did not say anything when they had to roll me again to clean my bum. Nor did I say anything the next day, during one of my five daily bedsore checks, when a different Medically Trained person discovered a lump of faeces stuck in my bottom from the previous day. 

That was a low point.
Washing myself alone, was and remains impossible and for the duration of my stay, washes were restricted to hand towel baths in my hospital bed. If I was lucky, the Medically Trained Person cleaning my nether regions might have even shut the window to my room for some privacy. Due to staff shortages, during the last week of my stay, no washes were offered and I went a week without being cleaned. Needless to say, washing hair is extremely difficult and something that has happened twice between the 7 September and now.
Thankfully, due to what I like to call ‘performance issues’ I was given a catheter for the first three-four weeks of my stay. After that, I relied on my good old pelvic floor muscles to stop me from soiling myself. How can that be when you cannot walk, I hear you ponder? The answer is long, boring, excrutiatingly painful and another blog post. In the interim however, you just need to know that I have a full back brace, handcrafted to fit my body and imagined perter boobs, which I am allowed to wear to mobilise. 
…………………………………………………………….

This really is a story of never ending gibberish. Maybe grab a cup of tea. Have a wee break. I’d have one with you but my mouth is currently tainted by the delectable taste of 60 mg of steroids per week, so I am only able to stomach the taste of fruit juice. 

Where was I? Right, my health. In addition to the bony stuff, the really smart Medically Trained People had to find out what was wrong with me and if there was anything that could be done about it. This period felt like it would never end, with the feedback I was getting changing nearly everyday. I’m not going to regurgitate all of it, just trust me when I say it was very confusing and everyday resulted in me hysterically crying and Big Sister getting angry. 
I lost count of how many CTs, MRIs, ultrasounds and x-rays I had, but I know it was a lot. It was not uncommon to be collected by the porters, without any clue where I was going or why. I knew where they were taking me on week one, when I had five fractions of radiotherapy to heal my ribs, but as for the rest, it was not like I was in the strongest position to argue or question. I simply did.
Things went downhill relatively quickly. By Day 4 I had tested positive for Paraflu, which gave me a chest infection and resulted in me being relocated to an isolated room on a ward where the staff are nice, but significantly understaffed. One night, I rang my bell for 2.5 hours before I saw a nurse. On the plus side, it meant that I had my own room with a nice view over London. A bonus when you consider the fact that the woman opposite me on the shared ward addressed me as ‘Emily’ and wished me well. 
The hardest part of having the lurgy was that I did not see somebody without a mask on for five weeks. Talk about dehumanised. 
The chest infection persisted, so for extra buoyancy, I also developed sickness and diarrhoea and a temperature. It was lush. 

Notice how I am yet to mention My Myeloma? There’s a reason. My Myeloma failed to behave in the manner of which I have become accustomed. For the first time since I was diagnosed with the wretched beast, I was afraid of it. It wasn’t behaving how I have known it to behave. My paraprotein was the highest it had ever been, and no matter what drugs were tried or the volume of fluid pumped into me, my calcium would not shift below 3.0.

And still I carried on. It may be the biggest test of my willpower and personal strength (because I really have no meaningful life until I am rid of the brace), but I unequivocally told the Medically Trained People that I am not ready to give up with my life yet. As long as the treatment maintains a reasonable balance between quality of life and those dastardly side effects, count me in. Sign me up.

I’m not ready to die yet.

Unfortunately, we soon ended up spending some time thinking about my death. I completed my will and paid for my funeral. Once I was fortunate enough to be on a reasonable treatment regimen, I suffered from what I now believe to be called an Acute Kidney Injury. At the time, it was badged as something far graver than that. I cried for what felt like days. I got so angry with My Myeloma, I told it I hated it. I begged for a reprieve, identifying many people other than myself who deserved the award for ‘Most Deserved Recipient Of The Most Stubborn Myeloma in This Fair Land.’ I really am not saying that other people deserve this illness; I was just surprised to learn that I had not come to terms with the fact I have it. Death seemed so much closer than before I walked into clinic on the 7th September. I don’t know when it will come and that’s the scariest part. How long is my piece of string?
My need for tears grew when I was taken off my morphine, which I had taken in slow release form everyday for five years. There were nightmares and ticks, to accompany my sickness and diarrhoea. I won’t lie; it was a tough, sleepless few days.
Do not fear, I will not prolong this anymore than I need to. They require near constant testing, but for the moment, my kidneys are behaving. It took a week or so for them to turn around. For how long they’ll stay in this state, only time will tell…

Six weeks after I entered UCLH, on 19 October, after a lot of pushing from my family, I was discharged. Gone were the at least daily bloods, out with the cannula resulting in the constant beeping of unanswered alarms. Goodbye to the four hourly observations, even at 3am. Welcome to sudden and ill prepared loneliness with an absent of nurses. So long institutionalised regime. Hello privacy. After six weeks, I am to fend for myself once more. 
Just between us friends; It’s fucking terrifying.

The view from my hospital window

EJB x
P.S. New treatment regime (Velcade twice weekly for three weeks;20mg Dexamethasone the day before, of and after Velcade; Veneoclax eight pills daily

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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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A Lesson in British Decorum

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

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

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

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

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

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

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

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

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

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

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

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

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

Me: Okay.

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

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

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

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

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

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

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


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

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

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

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

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

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

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

In private? Really?

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

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

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

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

And with that, this particular lesson ends.

EJB x


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

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10 Hours In London

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

It cannot be taken away.

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

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

Steroids are responsible for a lot.

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

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

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

EJB x

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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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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 – A Side Note 

There is an app I have on my mobile telephone, which I like to call The-Most-Depressing-App-In-My-Phone-That-I-Cannot-Bring-Myself-To-Delete-Because-I-Am-A-Tortured-Soul. Perhaps I like being reminded of my years of good health, or perhaps I really am a tortured soul.

Not that I could ever forget the  importance of today’s date, but said app would make it next to impossible for me to forget My Myeloma diagnosis even if I wanted to. For the last few months, let’s say thrice weekly, the App in question has been reminding me of the quick deterioration of my body over the Summer of 2012. 

Whether in the form of several photographs of just my legs on my bed with EMan on my knees, a photo of me wearing a sling, me looking thinner or general comments about me not feeling very well, the reminders have been there. Given the length of my last blog, I thought the following would commemorate said anniversary, without getting too deep reflecting on our thoughts and feelings…

I saw the following pop up one day, and saved it, in preparation of my big 03.

  

My response when I saw this pop up on 20 June?

“I proved her wrong, didn’t I?”

How Housemate guffawed. Uncomfortably. 

See, myeloma is not always bad. 

The following comment proves my previous statement wrong FYI, but that’s okay. I had to be disconnected from an IV drip whilst naked the other week, so very little embarrasses me.

  
EJB x

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N.B.

On the days when I feel like there is an improvement in my mental capability, I remember that my mobile phone device is full of  blogging material of questionable quality. It’s a responsibility, for I then feel tied down to telling what a lesser person would deem an uninteresting story, whilst simultaneously knowing that I personally, will feel instantly better for sharing and recording, in a way that can never be taken back, whatever the particular shit myeloma has thrown at me during x amount of time between blogs. 

As the earth has continued to rotate, I gave at least managed to hide the evidence of what could form a blog in my iCloud account instead. I guess today is one such day, I have some sort of energy, except, I started writing this blog about ten hours ago and so far, it looks absolutely nothing like I anticipated it would when I started morning. I am fairly certain for example what this will be the only time I mention NHS meals.

Of late, My Myeloma stories are overflowing in my virtual world and my actual mind, and not on my blog. Few people know just how many days I have spent sleeping in a room occupied by strangers or how many times I have been put to bed. There are times I am so confused by it all, that the easiest thing to do to manage it, is to fall asleep and forget it ever happened. I am not even sure what my reality is 100% of the time. I would have no clue at all if I didn’t attempt at least to try to maintain a record. I need a record of this. I want a record of the times I fell asleep mid sentence, or when I canceled plans with my friends and I cried myself to sleep because I saw no end in sight. Hell, I even want a record of my most recent and nightly nightmares. 

Right now, I’m experiencing something new almost daily, and yet I’m not fully documenting it, as I had once documented before, because the something belonging to my sister that entered my body three weeks ago or so (see I do not even know the day) seems to be killing off all my two autos later, surviving, brain cells. 

I have had four weeks of treatment,and of course we are running very close to a certain three year anniversary, so there are no shortages of tales to tell.  I want to tell them but it’s getting close to medication time.

Almost everything I have experienced since my allo commenced is ‘blog newsworthy’ (people write blogs about Stephanie Meyer’s arm hair right?), I just haven’t quite worked out where the energy is to tell you about it. Know I plan to, it might just come later than I actually experienced it.

I used to think that a late blog would be something of a disservice. If a blog was written out of anger for example, like the half written one I found the other morning, time gives me the ability to calm down, to compose myself, and omit the need to rebuild any of those metaphorical bridges that might have been damaged mid rant. On the downside, by waiting, it takes away that raw emotion, the raw emotion heightened by my inability to eat raw foods, and I feel a little bit like I am making things sound easier than they are. I feel like it makes me sound more composed than I am, when I am really not. Not only that, less blogs I dramatically reduces my site’s statistics and my ego likes the notifications. 

If there is one thing I have experienced a lot of since I started frequenting St Bartholomew’s Hospital everyday, it is raw uncensored emotion. Perhaps the fact I am too tired to blog is stopping me from writing something I would regret at a later date. It’s not a lie, it’s just presented a different way. That is what I keep telling myself when I look at my ever growing list of half finished drafts.

I cannot give you any specific examples, for that would really negate the need of this temporary notate bene. Hypothetically, however, I might have written something negative, something along the lines of;

There is still time to jinx this procedure by talking about it now and I most definitely, most adamantly, most whole-life-depends-on-it-do-not-want-to-jinx-this. But and that is a start a sentence with a capital ‘B, But, I do not like Saint Bartholomew’s Hospital. 

And then the hypothetical thought better of it… Like I said, I did not write that down, those thoughts are imagined. If somebody did hypothetically wake up one morning and write that down before they even got up to go to the toilet, I am sure they had good reason for doing so and it wasn’t because she felt the nursing assistance was slightly rude that morning… Hypothetically. Similarly, so too, could something like this have been said, despite me never actually joining any of these words together to make a cohesive sentence;

Every time I have experienced Red Thumping Rage over the last 17 days, I have felt like a teenage brat in great need of a reality check, a slap round the face, a smidgen of gratitude and a slow play replay of the NHS part of the 2012 Olympics opening ceremony.

I could even have imagined images of clutter or me sleeping. Maybe, like I said. I do not know. The negative portrayal of a scientific marvel does not sound like me. 

  
  

I love everything remember? I think my care is great. I love talking about myeloma and myself, and I cannot wait for the time when I have the effort to do it properly, with a proofread. Until that point comes back, we get what we get. 

It’s much like the unpredictable bowel.

EJB x

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Catch & Release

It has been seven whole days since I was told that I could go home and indeed, went home, leaving my week stay at St Bart’s but a distant memory. The latter part of that sentence is total bollocks by the way, the schedule of an allogeneic SCT, even if it is just a mini one like mine, makes it next to impossible to pretend that the hospital is just a misty water coloured memory in the corner of my mind. In the seven days I have been home, I have been to St Bart’s twice and in touch with them via phone or email on three other occasions. Essentially, I have been in touch with said hospital every working day since I left it. 

My bloods might be going in the right direction and the medically Trained People are making all the right noises, but did I leave there too soon? How the heck should I know? I spent all of Monday in hospital being tested for bugs and slugs in isolation, because they was a question over my current health.

If you were to speak to me or see me over the last week, you would probably conclude that I did leave too soon.  On Monday, a Medically Trained Person was asking me complex questions like “what was the date of your transplant?” and “what did you do before all of this?”, and I felt like I was taking my French oral GCSE without revision. All I could do was apologise that I could not speak normally. Essentially, you are looking at slow, occasionally drawling slur.

I have had two stem cell transplants before this, they were autos, meaning the cells were my own and the recovery was hard, especially after the first one. All so very hard. Upon discharge after both transplants, I got into a car and went straight back to Mamma Jones’ to be looked after until I felt like I could take a stab at doing it myself. My current treatment regime does not allow for that sort of leisure. It barely allows for sufficient rest.

Upon leaving last Wednesday, I was told that I needed to return on Friday or Saturday and then again on Monday for a Doctor’s appointment, leaving little time to make the four and a half hour round trip journey back to the Fens. And so, I decided that I would stay in my flat, with Housemate to help me until after the appointment on the Monday. There are many things one could say about this decision, but for today at least, as I continue to struggle to find my words, let’s just say it was decision most ‘foolish’. 

I am incapable of looking after myself. I imagine that is a fairly difficult statement for any 32 year old to say, accept I am 31 (the proofread) so I will say it again because I know it is hard for me to say; I am incapable of looking after myself. I am also incapable of planning anything, following a plot of any kind, having a prolonged sleep without experiencing a nightmare and not missing my friends.

I knew these facts last Friday, when with my bags still packed from the hospital sitting in my hallway , I phoned Manma Jones crying because my hair had started to fall out and I needed an hour’s lie down post shower, pre dressing in order to make myself presentable for blood tests. An hour after that I spoke to Big Sister and three hours after that she was at my front door ready to drive me back to the house of Mum Love. That night,  100 miles later, my mother needed to help me into my pyjamas. I then spent almost 23 hours of the next day sleeping. I did something quite similar yesterday, although yesterday, I only ate when food was presented to me at 18:10hrs. The previous day, after nine hours in the hospital, I realised that I had forgotten to eat anything at all. 

In hindsight, thinking that I could look after myself straight after receiving seven days of round the clock care, was just bonkers. Of course I have a Support Network in London led by Housemate and Bruce, but one of them is not anatomically capable of putting me in my pyjamas and the other one would be mentally scarred by the concept. Essentially, London assistance isn’t the same as the one I get with Mummy. The people of London have no reason to stand by me when I scream and shout and let it all out, and if I were being perfectly  honest, I will always try my hardest to avoid too many people seeing me at such a low ebb. A location I have been flirting considerably with this last week. 

I am trying not to overthink the situation because I know there is no turning back now and I also know how fortunate I am to be in this position in the first place. I just wonder that if I am finding this transition so difficult now, how the devil am I going to manage when the real thing gets started in a few weeks time? That’s rhetorical.

Some of you may be fortunate enough to have never been an inpatient in a hospital, so let me tell you that whilst in hospital one has little to no privacy even with the privilege of a private room. The NHS, the wonderful and flawed NHS, pays people to create and deliver a care plan, cook and carry  three questionable meals a day, waters you, takes your blood, check your pulse, breathing and blood pressure, prescribe and deliver the correct drugs at the right time and ensures said drugs are swallowed, they change your bedding and clean your room daily and these are just the people you see. Those tubes of bloods and tubs of my urine had to go somewhere, to somebody to check and the results put on to a computer, even if I wish these tests were done with greater haste. My point is, when one is an inpatient, all they have to do is try not to get too irritated by the lack of privacy. Everything else, even if it is not done to a quality one is quite used to, is done for you. One Sunday, for example, the threshold to my room was crossed 47 times in a 24 hour period; 45 times by Medically Employed People and twice by members of my Suppork Network. I do not know for what reason I documented this, but I believe it validates my next point.

  
The minute I walked out of the East Wing last Wednesday afternoon, all the responsibility for doing all of those listed above bar the things done by those unseen technicians handling my bodily fluids,  fell back on to me. It fell on to a me who continues to be nowhere near capable of doing such things alone. I can barely remember to drink, let alone to prepare the food I do not have the energy to eat, and remember to take the 20 odd pills I am prescribed each day at the correct intervals. And then there is cleaning, I attempted to lint roll my pillows today to remove evidence of my shedding hair and Inhad to do it in four separate sessions.

I went into my treatment with my eyes wide open. I knew it was going to be difficult, but I did not think that I would be doubting my ability to see it through so early on. A friend said to me earlier that I had rhino skin, which I sincerely hope is true for no other reason than all this treatment is actually going to make my skin thinner. Not just metaphorically thinner, but old-lady-be-careful-with-the-plaster-thinner. 

I think I just need a few weeks in bed to rebuild, but that is not afforded to me. 

My transfer to St Bart’s seems to symbolise much more than a change in venue for my treatment; everything seems different and all of it seems out of my control. Even though I may allow myself the occasional daydream that this time next year ‘I could be normal’, I am also a realist. I know that what is still to come is going to be so blooming difficult and I’m struggling to see where I am going to find the strength from to achieve my goals. My treatment feels relentless. This is relentless.

Prior to my discharge last Wednesday, I was asked to read an 79 page leaflet from Anthony Nolan called ‘The Seven Steps: The Next Steps’. I knew the contents of it, but I do not know if on the day I was getting to go home after spending a week in a drug fuelled neutropenic haze, I needed to read “it is important to remember that although you are being sent home from hospital, and an important phase of the transplant process is complete, it will be many months before you are fully recovered”. Define ‘many’.

The treatment is intense and I have not had find time to catch my breath. Reading that leaflet seemed to have cast a spell over my whole week. I do not normally feel so negative. That leaflet basically said, don’t relax yet, for the worst is yet to come. 

EJB x 

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Definitely Not Normal

There is nothing more anticlimactic than the word ‘transplant’ prefixed by the words ‘bone marrow’ or ‘stem cell’. Having experienced two SCT’s before, I knew this time round was not going to start with good looking people wearing scrubs shouting “stat”, whilst sporting my blood all over their latex gloves. My loved ones were not going to be waiting patiently for news in a reception area and it would appear the only soundtrack thus far comes from Julie Andrews. My allogenic transplant has looked nothing if not boring. I am convinced that the optional removal of a bunion would have looked more exciting than what we experienced up to and including on Thursday.

I’m poised for drama, but I do not know what that drama is going to look like yet, or when it is really going to begin, so in the meantime, I will share a few photographs of how Medically Trained People have made the extraordinary, appear somewhat ordinary.
Harvest

   

    
 
Day Zero The First

   

   
   

   

Day Zero The Second

Many people, included I, am surprised by fact that the stem cells are not tested where they are harvested at St Bart’s. Instead, on each Day Zero after Big Sister had been drained and her pins were with needles, her stem cells were couriered to The Royal Free Hospital, some five miles away for testing. They would then travel back by courier, before entering me. It seems a strange world we live in that my sister’s bodily fluids could have visited the magical place known as Whitechapel without their maker being present. 

The cells were taken away in branded picnic bags. On the second day, Big Sister and I showed far too much excitement towards the courier returning our precious goods  when unfortunately for him, he came across the two of us in a lift. We squealed (because it meant I would be home by 20:00hrs) and he looked at us like we were at the wrong hospital. I captured the moment. 

  
Waiting

  

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