Category Archives: UCH

The Know It All

When it came to getting my radiotherapy, I was very much in the been there, done that, got the t-shirt, camp. If there is such a camp when it comes to radiotherapy. I bet there are radiotherapy clubs, but this is just me thinking out loud. I do not want to join a radiotherapy club. Prior to my sessions last week, I had had radiotherapy twice before. Whilst my previous experiences were not without their side effects, if you had spoken to me the week before last, you would have heard me say with great confidence “of all the cancer treatments I have had, radiotherapy is by far the easiest one.” One of my dear friends offered to put her child into nursery to accompany me on my first session, another dear friend offered to take a day off work; both offers were immediately rejected as wholly unnecessary and seen as (a much appreciated) overreaction. 

I thought radiotherapy was easy. At least the way in which I have experienced radiotherapy was easy; in the form of a short five day course or as a one off session. I am not naive or conceited enough to think that the people who require weeks of back to back, daily radiotherapy would classify their experience as ‘easy’. I described myself as a seasoned pro, not to a Medically Trained Person, but in my head and probably on this blog. To the Medically Trained People, I somewhat arrogantly sped through the list of side effects and I had very few questions prior to my consent. I just wanted to get on with.

In terms of usage of time (if you exclude the travel), I suppose radiotherapy is easy, and it is more for this reason that I declined the kind offers made by my friends to accompany me to the hospital. I attended UCLH for five days and only one of my visits lasted for more than an hour. On average, I would estimate my trips lasting no more than 30 minutes. The zaps themselves are even shorter, taking a matter of minutes, or even seconds, it’s hard to tell. It’s not like Goldfinger, you cannot see a green laser coming for you. After my first session on Friday 7th, I asked whether that was it when the technicians reappeared, because I was completely unaware of the procedure taking place. I thought that the machine buzzing and moving around me, was preliminary work before the real deal could take place. That expectation is coming from somebody with prior radiotherapy experience; my memory truly is awful. The majority of time my time in the radioactive bunker was spent taking my clothes off and putting them back on again. 

I do not recall experiencing any side effects after my first encounter with radiotherapy. That was just one zap on my right hip and the only thing left to remind me that I had it, after the pain went away were the three tattoos left behind. My second experience of radiotherapy was not as straightforward as the first, but it did not compare to a week’s dose of steroids. Approximately two weeks after the five sessions on my L1-L5, I endured two days of food poisoning like symptoms due to the zaps going straight through my stomach. This side effect, whilst absolutely horrible at the time, was predicted and after a day or two recovering, was quickly forgotten. 

Less easy to forget, but without the severe sweating, was the scar that treatment has left on my back. Initially, I say initially but approximately six weeks after the treatment, the skin on my back appeared to have been burnt. Burning or sores is a well documented side effect of radiotherapy, so I was unalarmed but itchy, I treated it with aqueous cream as instructed and thought nothing more of it. Approximately 15 months later, I developed Graft vs Host Disease as a result of my transplant and I was reminded of my radiotherapy once more. 

I could go on and on about my back, but all you need to know is that as a result of the GVHD, I still have significant scarring on my back. The scarring is in fact so unslightly that it was commented on several times during my most recent week of radiotherapy. One Medically Trained Person with dulcet tones reminded me to moisturise, to which I politely told her that moisturising would not cure this particular ill. I actually wanted to laugh in her face at the stupidity of her comment, given how many doctors I have discussed this ailment with and how all of them have been left scratching their heads. I did not laugh in her face though, because her comment was only stupid to me (and maybe Mamma Jones) who has lived through the saga, or what feels like a strange X-Files-like marking that is my back lower. 


Exhibit A – I know it is gross

Despite my back and the hideousness of it, going in to my most recent treatment, I still thought it was going to be easy and the side effects minimal. Perhaps it is because I did not have the time to think about it. In fact, when it came to asking questions, I asked only two. The first question, given the fact I just wrote two paragraphs about it and shared a rather nasty picture of it, was about scarring. Of the three areas being treated, the one requiring five sessions was on my upper spine and call me vain, because I can be, but I do not want to have a similar scar that would be visible. One scar like the one I have is enough. It’s a story and an occasional show piece. Two scars, with one of them on a visible area of my neck is just unnessary. Only time will tell if history repeats itself. Unfortunately, I cannot apply the cream provided by myself, so I am reliant on the kindness of others to rub cream into my naked body.

My second question was about diarrhoea and whether I would get it again. Nobody wants to get diarrhoea, especially the sort where your stomach cramps constantly and  sweat falls from your forehead to the floor. Flashback warning! I just recalled having to remove all my clothes whilst on the toilet the last time I had radiotherapy induced toilet issues. I cried too. Horrid. So yes, I don’t want that. Unfortunately for me, I had one off zaps to my T10-L1 and my left ileum; both of which could have gone through my stomach. So far, I had three days of cramping that was easily treated by a few doses of Buscopan (never underestimate the power of Buscopan, I’m an advocate and I believe it should form part of any personal drug stash). 

I am yet to mention fatigue. I knew that the treatment was going to make me tired, especially as the doses accumulated. It made me tired last time and I expected no less this time around. I suffer from fatigue daily, so I thought that it was barely worth a mention. Fatigue impacts so much of my life already, it’s as common to me as water. Nevertheless, I prepared for more fatigue than usual. I purchased ready meals and purchased food that Housemate could cook for me. I bought some plants for my bedroom and replaced my broken aromatherapy defuser, to ensure that my room was a serene and calm environment. So convinced was I that I was going to manage it with relative ease… 

You’ve guessed it. I’m eating my words. I’m chewing down on them, masticating slowly before I humiliatingly swallow them and choke. 

I do not know if it was because I had more radiotherapy than I had had previously; or because I am physically weaker than I was when I had the previous my treatments, but I found last week incredibly difficult. I struggled. Put it another way, it was anything but easy. 

Pain. I was in a lot of pain. Hell, that was the reason I was having the radiotherapy in the first place. Unfortunately, the start of the radiotherapy coincided with a deterioration of my pain. A vast deterioration. I had taken to wearing my sling all the time (bar bedtime) to take the pressure off my back, which did alleviate some of my symptoms but there was a time limit to it. Don’t get me wrong, I felt pain whilst wearing the sling too, I was just in less pain. If I was not wearing a sling, I could not stand up straight. The pins and needles in my arm would be constant and my elbow felt like something was taking a hammer to it. I know I am doing a terribly job at describing my pain. It was in my back, my left arm, my legs, I felt it everywhere. It was all consuming.

As the week of the 10th April started, I had  forgotten one crucial thing, and that was that radiotherapy can cause more pain before it relieves it. By the Tuesday, after I had had two sessions on my upper back and the two one off sessions, I remembered. The radiotherapy seemed to enhance every pain I had. The pain in my ileum became instantly worse. It felt heavy and the pain pounded like a heartbeat. My back, well, my back felt like everything was wrong. I couldn’t lift my head or turn it. I had the occasional spasm. I even struggled to get in through my back door because I couldn’t lift my leg high enough. Essentially, I moved like the pre oiled, rusty Tin Man. Sleeping on my side was impossible. Sleeping full stop was difficult. 

My words do not do what I felt last week any justice at all. Know that I frequently yelped in my pain, occasionally I produced uncontrollable grunts. The pain, as does my pain today, got progressively worse as the day went on. Doing something as simple as getting ready for bed had to be broken down, because the act of taking off my clothes, putting my pyjamas on, pulling down my bed sheets and setting up my five pillow sleeping tower seemed impossible feat. 

Despite fighting to be independent and at times, doggedly so, I relied on Housemate heavily. As I could not bend down, he had to get my food out of the oven, fill up my water bottle, add ice to my drinks, put my post radiotherapy cream on my neck and do up my bra. On the Thursday, Mamma Jones had to drive to London after a full day’ work, and drove me back to her house because I could not lift my suitcase nor get myself to the train station. And because I felt so rundown that I needed the Mum Love and I also though that Housemate needed a break.
The above is not solely the fault of the radiotherapy but it definitely played a part. I do not think that this was a ‘woe is me situation’. I really hope I do not come across that way. I was genuinely scared by how limited my movement became; that should be enough to convey how difficult things became.

In addition to my overly documented pain, there was the fatigue. The fatigue was easier to manage. If there is one thing I am used to managing, it is my fatigue. That said, I did manage to fall asleep in the waiting room of the Radiotherapy Departmemt. I walked in, sat down and within 10 minutes I was fast asleep. I know it was 10 minutes because I arrived at 14.30 and the Technican called my name at 14.40. 

I completely underestimated the toll the treatment would take on my body. It’s radiation. I should have put two and two together. In my head, this was just the equivalent to taking a paracetamol. On the Monday of treatment week, in addition to the daily zap on my C5-T5, I had the one off zaps on my ileum and my T10-L1. Oh my gosh, such was the power, I felt instantly felt sick. It was a miracle I did not vomit in the taxi on the way home. By the time I arrived at my flat, all I could manage was to roll onto my bed after finding an Ondansetron (to manage my sickness) in my drugs sack and there I stayed for 90 minutes in the foetal position. I could not move. Everything felt weak and stiff. I believe my attempts to talk actually manifested in a mumble. When I eventually came round, I discovered that I had dribbled on my pillow and chin. There are reasons why I am single. That evening caught me completely off guard. Once again, I found myself panicking, worrying about the cause of the illness, despite realistically knowing that the cause was the radiotherapy.

Finally, in addition to feeling tired, sick and excruciating pain, the radiotherapy made me sweat. Instantly, after each session, I would have a hot flush. By now, I am used to hot flushes but the post radiotherapy ones were severe. One day, on the first day, I sat in the hospital’s main reception for longer than necessary because I was trying to work out how I was going to wipe my sweat off the plastic seat without anybody noticing. You’d think I would have well rehearsed this move by now, but apparently not. I think the radiotherapy had sent me a little doolally. Or perhaps it is my medication. My reactions and my ability to think feels much slower, less reactive.

A week on from my radiotherapy ended and all I can do is wait. I have no idea if I am going to get an upset stomach in a week’s time, or if I am going to get burn marks on my neck or hip. Not only am I waiting for the bad things to occur, I’m also hoping for the treatment to work. At the moment, I can feel my pain improving slowly. Slowly over the last five days, I  have gradually felt the sensation in four out of five fingers on my left hand return! That deserves the exclamation mark. Truthfully, I do not know if the improvement in my pain level is due to the radiotherapy or last week’s increased medication. I just spoke to a Medically Trained Person and she suspects it is the medication. So, wait some more, I shall. 

So much waiting.

Perhaps me saying that radiotherapy was easy, was wishful thinking. If you say it, it will come true. I know that is complete bollocks, but some sort of positive thinking is a good thing. Right now, as I end yet another epic blog and take in that I had a week of radiotherapy and treated it like it was just a regular day, I realise that I am exhausted. Absolutely exhausted.

That much at least, I know.

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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The Fear – Part I

I used to be afraid of many things. Several things in fact, despite having a pride in being able to manage a spider or any such creepy crawly, I was quite the scaredy cat. It is for that reason that my knowledge of horror films is so distinctly lacking. My worst nightmare would once to have  swallowed a goldfish, but even that causes less goosebumps in me than they once did. I’m not an ox, I still would not enjoy it and any trip to an aquarium equites avoidance at the tanks at all costs. Even the recent odd sighting of a mouse in the flat (mice in Spring, seriously?) has caused more of a whelper than the once or thrice shriek of years gone past. I say all of this, because I have quite a strong inkling that I now know what real fear is. It’s not an inkling in fact, I most definitely know what fear is now and it is all linked to My Myeloma. Myeloma, with it’s series of unknowns and what ifs is terrifying. My Myeloma, which seemed to have inherited the most dogmatic of personalities, so far, can do whatever it wants to me. What I want, what I will and what I need, is barely a factor. In my world, it is, what it is.

Where am I then? For the last few months, since the beginning of the year, I have been experiencing increasing pain in my left arm and in the left pelvis. The pelvis issue is a long standing issue, worsened by my holiday in November and maybe some excess (unnecessary) walking in Amsterdam. When one like me has such keep-you-up-at-night and cannot-climb-into-the-shower sort of pains, there is only really one way to find out what is causing these particular pains and that is the MRI Scan. 

Long time readers with long time memories will know that I loathe the MRI scan. My first one on 20 August 2012 was, without a hint of hyberole, the most pain I have ever experienced in my life. I loathe the procedure, but most of all, I cannot abide waiting for the results of an MRI. I’m terrified of the big reveal. And that, my dear friends is where I currently find myself. Waiting for a Big Reveal.

I can imagine what you are thinking. You are probably thinking there will be no such big reveal, and the pains are just minor things and if there is anything lurking on her bones, then they can be simply zapped away. I say that to myself. Sometimes. Inside my head, I am thinking about massive tumours, secondary cancers and death. Housemate is currently particularly fond of telling me that the pain I have is a trapped nerve. The problem my politeness fails to reveal, is that I know my body. I have known every time I have relapsed by the new pains and I know that this is what is happening to me this time. 

The problem with this time is, what do we do three transplants in and various treatments later, if I gave relapsed? Don’t think about it. Don’t think about it. DON’T think about it.

Clearly I am thinking about it? So, planning  ahead, and realising that I occasionally do need somebody to hold my hand, I asked for Mamma Jones or Big Sister to attend the clinic appointment that followed by MRI scan on Saturday 25 March. It’s mostly so they can listen and ask questions, in the event of me becoming a shelf shocked mute. We had five days to wait for this reveal and believe me when I say, it was a substantial wait. As I am a behind in the story, and to create some more suspense, I’m going to make you wait a little longer too…

In the four weeks prior to my scan, the nerve pain in my left arm had become unbearably worse. I couldn’t sleep properly nor hold a proper stance. I had taken to wearing a sling outside, not because I wanted to be on the cutting edge of fashion, but because I thought it would give my back a break from carrying around my 2 stone + of arm. Gone was the medically trained idea that it was caused by neuropathy caused by previous medications and in were words like, ‘previous disease’ and ‘tumour’. My personal favourite was ‘not to alarm you, but if anything changes, go to A&E right away’. 

And with that, I was left in a long, hot pressure cooker.

As you might have surmised, initially, if there was an alarm, the Medically Trained People did not show it. A feat in medical training. I had lost feeling in half of my hand and had constant shooting pains in my arm. But, as the pains showed no signs of abating, I was prescribed medications. Lots and lots of medication. 

I have always considered my pain relief systems rather light, but in the matter of a few weeks, I had gone from having 80mg of MST (slow release morphine) twice a day, six paracetamols and two Lorazepams which doubled up as my anti nausea tablets. To, 100mg of MST twice a day, plus breakthrough pain relief, eight paracetamols, 300g three times a day of Gabapentin, four lorazapam and then in increasing doses finalising at 50mg of Amitriptyline, to allow for something resembling sleep. Even my ever increasing nerves were unable to shit that increased intake of medication out.

So not only was I in constant pain, I was constantly exhausted, making me feel constantly irrational. A sleep however, even if it is drug induced, proved better than no sleep at all. Even if I did feel like I was on the edge of my seat the whole time.

Despite all of this, I still tried to be strong. I mean, I didn’t really sleep much in the week leading up to my appointment and I relied quite heavily on my friends to keep me distracted, but I socialised and I laughed. Thankfully, the weekend of the 25 March was not just the weekend I had an MRI scan, it was the weekend of my most dear friends’ wedding. The distraction was just the tonic, even though I had to leave early on one day because I felt like somebody was playing the banjo on my funny bone. 

This is a picture of me to prove that despite looking dead, I was still doing my damnedest to live, as Miss Havisham. It also shows I exist.

Wondering what was going on was never far away. I’m going to let you into a little secret, in November, as part of my attempts to medically retire, I received a letter saying that I had an outlook of 12-15 months. 12-15 months! Ever the pragmatist, I took this as the worst possible case for my 32 year old lifeline and hid it in a drawer somewhere in my brain. There are no finite treatments remember. 

As much as I like to pretend I’m a fighter too, I’m more inclined to think the worst when expecting test results. Katy Perry wasn’t going to hear me roar. As the days grew closer and the pain increased, I couldn’t help but be reminded of this timeline and these facts. Add to that every possible consent I have ever signed for treatment, noting severe side effects (SECONDARY CANCER) and I had become a shaking, irrational, moody pants. Afraid of upsetting myself with my almost self fulfilling prophecy, but terrified of it being the truth and constantly, on loop watching  my life slowly erase from the lives of the people I love. 

Who knew that lying down on a machine for what was nearly 2.5 hours could cause that sort of fear in me, but it did. I think I hid my hysteria well, but that’s just my personal opinion. These discussions, less than five years into My Myeloma journey seem real now.  I am afraid of dying, but I am so scared of leaving my friends and family. 

I have long discovered that this is not a subject anybody who loves me wants to entertain. It’s definitely not something, in the middle of tests one can really talk about because one is trying to be hopeful. It was all I could think about. I felt so duplicitous and defeatest. Some mornings, when Housemate left for work, I would snuggle up to the Bruce Dog and think ‘are you going to remember me?’. I would then apologise to him that I couldn’t lie on my left hand side because my pelvis just couldn’t take it and worry he was going to hate me because one day, I won’t just leave on a weekend trip to my parents’ house. On the issue of my pelvis, this is indeed a mental fight I have with the dog on a daily basis. He doesn’t understand why I have to lie on my right hand side. He’s a bloody dog.

So, then the day came. My clinic appointment at UCH on Thursday 30th March. I was so nervous, I ploughed down a  packet of Refreshers in my first 15 minutes of waiting. My need for sugar was greatly met by my Big Sister with a nice, unhealthy slam of Tablet. The best food with a medical name on the market. I don’t recall much of the waiting period. I know it was a few hours and I did my customary monthly pregnancy test. I remember Big Sister saying my favourite Medically Trained Person had a good poker face, but that was it. 

What fate was going to greet me when I was eventually got called through? Then it happened, I was called through not by a registrar, but the Head of the Clinic. Bad news. I walked in with my best smile on and my head held high, for that is all I have always done.

The MRI scan did show disease in my neck, which is causing all the pain in my arm and my arm. Blah, blah, blah. My pelvis is also in such a state that it’s impacting on my muscles and it is for that reason, I have required a step stool to get into bed these last few months. Fortunately, these little nuisances can be treated by radiotherapy. Frustrating, sure, but fixable. I exhaled. Briefly.

For what came next, could well have been the worst thing I have heard since the day I found out I had myeloma.

You have stopped responding fast enough to all traditional Myeloma treatments…’

And with that, maybe a minute or so later, I cried.

To be continued….

EJB

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Groundhog Day

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

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

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



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

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

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



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



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

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

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





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

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

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





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

EJB x

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

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The Cancer Dentist

These days I rarely learn anything new about myeloma. For preservation purposes, I tend to avoid reading about occasional medication advancements. I prefer ignorance on that subject for it does not assist my day to day. Such ignorance means that there really are few days in which I can learn or experience anything new about the wonder that is myeloma. My current treatment can quite easily be described as monotonous, and thus most days, I feel I have encountered everything this stage of My Myeloma can throw at me. Even the unpredictable delays and detours no longer surprise me. It’s an old hat. A black, old, slightly smelly, definitely frayed, hat.

On Monday of this week, as you may have guessed, I did experience something new. Be warned, this does not mean it was interesting (it was not), so feel free to skip to the end. Interesting or not, new is new, and I have been talking about it ever since. It beats me describing how I felt when I had a cannula put in on the same day, which is exactly how I felt 18 months ago and how I have felt almost every time I have had one since. There are only so many times you can spin the same tale, or else one risks becoming as monotonous as the treatment.

In case you wanted to know, the cannula on Monday stung for a few seconds as the nurse inserted the tube into my right hand. I like to use the right hand for cannulas because the left veins are sucked dry more often for blood. The sting was followed by the word I utter without fail, after a successful insertion: ‘blood’. It is a word that denotes relief that further prodding is not necessary. As soon as the tube was removed the bruise appeared and it remains still, or as I view it; the unmistakable mark of illness…. That is the end of that tale of my normality. I do love digression. I do love repetition.

Monday’s appointment came about because I have been experiencing an occasional pain in my jaw, and it was decided that the first step of investigation into the cause would be a trip to a dentist. The dentist in question, would be what I have been calling, the Cancer Dentist. No normal dentist for me. Exercising caution is key.

Did you know that having cancer treatment can make a trip to the dentist a dangerous thing to do? The reasons were explained to me, but my appointment was four days ago and many of them, especially the reasons with scientific jargon, have since left my brain. In a unspecified nutshell, there is an extra risk of infection for us types due to there always being an extra risk of infection. That is pretty standard, but for those with myeloma, the administration of bone juice adds a further complication. Although bone juice helps me elsewhere, there is a chance that if I were to have a tooth removed, it would cause more damage to my jaw and prevent recovery. I recall something being said about ‘flaking bone’. Nobody wants unwanted bone in their mouth.

Drugs do so much more to the body than you think they do. Apparently, I will have to give any dentist a full list of my medication should I decide not to be lazy and I must make sure that O give specific mention to the bone juice. I was told that I would have to mention the Zometa up to ten years after I last received it. That my friends, is an optimistic thought.

The moral of the story, if you have skipped straight to the bottom, is that when you are with cancer, take extra super duper care of your teeth. In the paraphrased words of the the Cancer Dentist, fixing problems in the mouth with everything else going on is difficult, almost dangerous. Prevention is key. Heeding her advice, and I have only been too tired to brush my teeth two times since the appointment. That, is called progress.

I told you this was an exciting blog.

I should probably mention what was wrong with my mouth huh? After finally admitting a problem when I could not wrap my jaws around a bratwurst, two appointments and an x-ray of the jaw via A&E, I got the the diagnosis. Do you know what was wrong with my jaw? Absolutely nothing. By ‘absolutely nothing’, what I mean is, nothing cancer related. I did not think that was even a possibility in this day in age. In fact, my jaw ache is something many normal people suffer from; the teeth grind. How tame. I almost feel like a wuss for one day, it even prevented me from eating a cherry tomato.

Okay, there was something else said at the appointment, something far more serious, but I fear you will judge me… I have a build up of plaque around my molars. It’s not like anybody can seem them. Worse than that, at the ripe old age of 30, I was given a lesson in how to brush my teeth.

So there you have it. It may have been new, but my oh my, was it boring.

I should add, to make this blog even longer, that even though I do not know how to brush my teeth, I have never had a filling… I do still have myeloma though.

EJB x

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Checking Out

Yesterday, the Senior Medically Trained People told me that I would be discharged by 15:00hrs. A person who had yet to complete her training told me that all being well, I should be out by 11:00hrs. Her estimate was supported by an Angel. I knew which time I would prefer, but I decided that patience was going to have to be a virtue when it came to me departing Room 7 on thirteenth floor of University College Hospital.

And boy did I need patience.

This morning, I woke up at 07:30hrs, relieved that two hours earlier my temperature had fallen to 37.0. My excitement was palpable. I just wanted to get home. I also wanted to have a shower, but there was no point in me doing that until my PICC line had been removed.

Based on what I had been told on Wednesday and yesterday, I needed to wait to see the doctors, my CNS, have my line removed and get my drugs. The latter, I was also told, were ready for me last night.

At 09:40hrs, I saw the consultant during her rounds and I was informed that I could go home. Fine. As they left five minutes later, the ward sister informed me that she would return in five minutes to get things sorted.

At 11:00hrs she reappeared to tell me that she would contact my CNS, confirm when I next needed to be in and check my blood results to confirm I did not need anything else. I said that 30 minutes before she came in, a Junior Senior Medically Trained Person had informed me of my blood results and said I would need to take some additional injections to boost my blood at home. The nurse was pleased with the news, especially when I told her I had already been in touch with my CNS and that I thought I had arranged having a blood test done in another hospital next week. The nurse left.

At 11:30hrs, I saw my CNS. Got all the information I needed and collected some blood forms. Done.

By midday, I was crying, because I literally had nothing to do, I could do nothing, until I was seen by the nurses. I may not have been doing anything for the last two weeks, but today, I had somewhere to go. Every minute dragged and dragged some more. I just wanted to get dressed. Trying to guess what time Mamma Jones should reach London Town was also proving stressful. All seemed well however because a nurse entered to give me my afternoon’s drugs and said they’d be with me in an hour. As I had a lot of time to think, I asked if they could also shave off my remaining hair.

At 13:15hrs a different nurse came in my room and I had what can only be described as a paddy, which embarrassed me because the nurse is very nice. We had a nice chat the other night and he made me think twice about a wish of mine to holiday in Moscow. Not at the moment. Anyway, he informed me that they would be with me in an hour, to shave my head and remove my line. My additional drugs had not arrived yet, so he added that even if they had removed my line, I wouldn’t be able to go anywhere. I explained that I could at least shower. I just wanted to leave.

It was time for show tunes.

I phoned some people and complained. I do not know how they could be so relaxed about it. I guess it is not their life is it? When somebody told me to be patient or relax, I got angry. Nobody could possibly understand the torture that is waiting to leave hospital.

At 14:40hrs, the nice male nurse returned. He removed my PICC, which was effortless and thankfully, painless. He then shaved my head again, to try and get off as much of the hair as one can without a Bic razor. It was at this time, I found out that my blood results had shot right up and I no longer required the additional injections. Brilliant. So I would be leaving soon, yes?

By 15:25hrs, I had showered, dressed and made myself look semi normal. It was just about waiting for the drugs. I sat. I waited. I carrie on listening to show tunes.

At 16:30hrs, with my wig on and my drugs in my bag, I walked out the main entrance and into a black cab.

I’m going home.

I’m actually going home.

I believe the customary thing to say right now is that I have done it. Bugger.

EJB x

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The Cell

Since I was diagnosed, I have frequently complained about feeling trapped by My Myeloma. I have likened my flat and my body to prisons, because of the limitations and loss I associate with them. Saying that, I have never spent seven days in my bedroom and my bedroom alone. My transplant allowed me to experience that. Pure isolation. Life in a gaol. Seven whole days in one 3 x 3 metre room, without stepping foot outside the door; I didn’t even open it. I entered my current cell, Room 7, on Monday 22 July at approximately midday and I did not leave that room, via the double door protection, until Monday 29 July, when I left for less than hour to have a cup of tea. I returned there and here I still remain, although, I was able to leave it again yesterday to shock people with my hairstyle on the ground floor. The corridor really is a magical place. It’s basically Disneyland for me, full of excitement and discoveries.

I have spent a long time, an age it seems, unable to fathom what the temperature is like on the street outside. Is it hot? Is it cold? No idea. I am on the Thirteenth floor in an air conditioned abyss, oblivious to the outside world, bar for the faint him of traffic.

In the deepest darkest pit of transplant illness, I did not care that I had not left the room, the thought did not even occur to me and if it did, I did not perceive it to be a negative. I may have got slightly frustrated by the noises outside my doors and wondered what the hell was going on, but I was too ill to care. With regards to me room, my main concern was whether I had the time and physical capability to navigate my way out of the lefthand side of my bed with my bag of fluids, to the toilet on the righthand side without bashing the big blue share in the righthand corner of get trapped in the base of the blood pressure machine at the top right of my bed. I would also have to target myself through the door, which for some reason, opens out wards, which is not entirely practical, when the movement of a being, also includes a trolley and wires.

By the weekend, I may have been getting slightly bored of the view from my bed, and the multiple notices on how to wash hands correctly, so I made Big Sister personalise my notice board. Personalise she did, but there was no escaping how clinical this room is and how it is not my own space.

As I started to become stronger, the smaller my room feels. It has become claustrophobic and the walls appear to be creeping in by the second. The problem is, now, I cannot help but notice how many people come in during the course of the day. Some knock, some don’t. It seems constant. Don’t get me wrong, I am most grateful that I have a private room and I am definitely appreciative of the attentive Angels, I just want more space. I want a different room.

Room 7 is blue. Several shades of blue in fact. Perhaps it is to match the nurses’ outfits. It is clean. Very clean. The room comes fully equipped with a hospital issue television (£7.50 for the day or £40 for 10 days, bargain), a refrigerator, a bed, a sofa bed, a chair, a sink, a toilet and shower, six signs telling me how to wash my hands, a table, an alarm or three, a whiteboard and thankfully, a view. A very nice, sanity saving, view to be sure.

As much as I hate this room now, I know it has serves me well. It has served me very well. It did not get mad with me when I defecated on the bed, nor did it smell. The room kept me safe and cool during this heatwave, which is good really, because I did not bring a razor to shave my legs. I didn’t think I needed to. I was wrong.

And so, I give you Room 7, all 216 hours of it. It’s a bit monotonous.

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Medical stuff

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The bog

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View from a bed

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Primrose Hill is in there somewhere

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I cannot wait to see my second bedroom tomorrow. The bed may not be connected to mains electricity, but I do not care. Bring on the double. My arse needs it. I also need a widescreen television, my life of relative privilege demands it. I really cannot manage these portable viewing platforms…

EJB x

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The Little Princess

Yesterday, I was absolutely positively excited and relieved when Mamma Jones entered my hospital room to tell me I was being moved up to haematology. It was even better, I was moving up to T13, back with T13s Angel.

What followed after that, seemed like an incredibly long wait until the porter arrived to wheel me up, it may have been a long wait, I currently have no concept of time, so it could have been 10 minutes.

It was a long wait in my time, because by yesterday morning, I was truly dissatisfied with the treatment I had received after coming through A&E. I had been put in a private room on a ward I was well acquainted with after last year. The room was not clean. There was blood on the floor and somebody else’s urine in a jug in the bathroom. Mamma Jones found a bogie on a wall. It was just, not nice, and it set off an uneasy night, which was made worse by the nurse’s response to my concerns about the cleanliness. She was coarse, dismissive and appeared to have no understanding of myeloma nor what being neutropenic meant. Upon arrival I had asked for some more morphine, and she said she would bring it in 30 minutes because it had not been two hours since my last dose; it did not come. She advised me, neutropenic and all, not to touch a lot in the room if I was concerned about the cleanliness, that comment made me itch. I also asked for some water, which I finally received at 07:00hrs. Prior to that, however I was given 11 pills to swallow, fortunately I had taken my own water. When my water was delivered in a jug, I asked for a cup, and I was told that there were no cups available. I did not drink the water.

During the night, I requested some drugs which the on call doctor had prescribed me. The ward I was on did not have these in stock, and another nurse said that the pharmacy would dispense it in the morning. She had tried to source the mouthwash for me, but failed, but was able to give me something similar, so I was thankful that she had tried to help me. In the morning, I then queried this again with the nurse with the jug, and I was told that she would not be able to give me any additional drugs until I had been seen by the doctors and as I should not have been there, she had no idea how long I would have to wait. I responded with a smile and condescension and explained that I had been promised the drug the previous night, and that she did not need to wait for a doctor because a doctor had prescribed it on my file. After a few minutes of her arguing with me, she then grabbed my file handed it to me, and said that I should point it out then. I did just as she asked, and she left. I did not get the drug.

As I waited for Mamma Jones, it was clear that people had no clue about me. Nurses, porters, cleaners and other staff wondered into my room without washing their hands, or they left my door wide open. The cleaners for example had a conversation with each other in my room with the open door about my complaints about the cleanliness. At one point, I heard somebody outside my room say ‘no,no, no, you cannot go in if you have a cough… She’s got something which means she can get more ill’.

When the porter finally arrived, I was tired and ill, but I was ready to be moved. We were accompanied up by a new nurse, who was, odd. Odd is the best and most appropriate word. After I was out of the room, and Mamma Jones was gathering my belongings, she said ‘have you got your tiara?’ I was confused by life in general at this point, and responded as such, to which she responded with ‘you know, little princess’s have tiaras’.

I am 29. I have cancer. I am in the middle of a transplant. I am no princess. Try a day in my shoes you haggard, spent too much time in the sun, horse faced wench.

This made me angry for the rest of the day, to be sure. The anger grew however, when thankfully, I returned to a place that 11 months ago, made what was happening so much easier, and I encountered some exemplary care. There is no other way of describing it, though I am pretty sure I will try during my staff.

It may not be that haematology nurses are any better than other nurses, but for me, they have something that makes it easier to manage my illness, so imagine what wonders come out when they are treating somebody who is having a transplant. Yesterday, one of the Angels had to go through some of my excrement for medical purposes. Unbelievable.

It seems to come so easily to them, and that made me angry, I could not see why the handful of nurses (they do not deserve my usual moniker), would spoil it for a majority. Fortunately for the dear, sweet wonderful NHS, I am with Medically Trained People all time and I see the good they do. If, however, my experience had existed solely of the hours I was in yesterday, then well, the less said the better.

Maybe I am a princess because my main Angel (for you get a lead), told me that she was happy that she had me and said when she saw my name on the list of patients she hoped I would come to T13 because she remembered me from last August. Yep, that gives me a big head. It upset me at the same time, because I do know what I did differently with the nurses down on the first floor.

As the day progressed, the main Angel was angered by the earlier comments by the woman, and raised it via the Angel Sister, who by the way, is also very nice. Not at all scary, which is always a bonus. To cut a long story, slightly short, the nurse thought she was being funny. As for the cleanliness, I will be complaining about that in due course, but I am just thankful that I got out of there.

I am told that whilst I may change rooms at some point, I will not be leaving T13, and to that, you can get an Amen. The illness is definitely here, in all of its glory, and I need to be in a place where everybody knows my name, or at least, be somewhere where the care as at the absolute highest of nursing care.

I believe I am where I should be, and my, is that, and the IV, making this much, much easier.

EJB x

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Admittance

At 15:00hrs this afternoon, I returned to my room, hoping that I would be able to get through the night before I became neutropenic and before my diarrhoea worsened.

Evidently, this did not happen.

After hours of checking my temperature seeing it creep towards 38, and managing my frequent trips to the toilet, Mamma Jones called the Ambi Care helpline at 21:00hrs, and we were told to come in via Accident and Emergency.

So, a quick walk up to Warren Street Station, and down Euston Road later, to A&E I arrived. By which point, my fever was in full bloom, and I looked like , well, I do not know what I looked like. I looked unpleasant. Mamma Jones said I looked like a criminal.

They helpfully would not let me sit in Reception, which led to me standing in a corridor for 5 minutes. I was seen in the tiny A&E room before I was moved, in a wheelchair to the section where the exciting things happen on Casualty.

You hear a lot of crap here. We literally heard somebody crapping themselves, which definitely smelt ‘offensive’. There I was until 23:00hrs, during which time, I was squirming in pain, trying to think of the correct answer to the official medical barometer of pain, had tests taken and I was seen by a haematologist. He established that I was neutropenic. I had a temperature of 38.2 and I really did feel like an alien was going to come out of my belly.

Due to the smell of faeces, I was moved to a private room, whilst they located a bed for me. There were no beds in haematology. Brilliant. Slick. Efficient.

At 23:56hrs, I arrived in my room for the night, I say night, because there is no way I am staying on a general ward, under the care of nurses who do not know what myeloma is. I am tired, I am in pain, I am on oramorph, and still I can confirm that I do not like this room. I doubt that it has been properly cleaned for I have found a jug with urine in it and there are blood stains on the floor. I have been advised not to touch a lot in my room. Mamma Jones apologised for my reaction.

Now, to try and sleep. I can see Gower Street… I want the penthouse.

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Anticipation 😳😁😷

I am currently in a state of unknown. I am waiting for something that is going to happen, but I am yet to fully comprehend what that something is.

I have had my transplant. That part is done, and now, I have to sit around waiting to be neutropenic or waiting to get an infection, which ever comes first, the chicken or the egg. All I know is that something will require my admittance to the hospital. It is quite a frustrating place to be in. Part of me is enjoying the Ambulatory Care set up, which involves me staying in the hotel and walking back and forth to the clinic once a day, until the day arrives when I am no longer able to walk. It means that I can walk around and have some sort of independence, before I have none and I am confined to my hospital room. The part of Ambulatory Care that I do not like, is despite the freedoms it appears to offer me, I feel trapped in them.

I do not know when I am going to go downhill, and could my downhill manifest itself as quickly as the click of a switch? How far can I go before it becomes to bad? Should I be walking the streets? I always complain about the extreme temperatures, but the current climate mixed with my current meds, further restricts what I am able to do. Should I actually be gallivanting down to Oxford Street as the nurse suggested on Tuesday or should I be chilling on my bed in the hotel room with the curtains closed in an air conditioned abyss?

I know that I would complain if I was already trapped in the hospital, and I am fortunate that my hospital gives me the choice, but I just wish I knew when it was going to happen. If I knew the magic answer, I would know whether I can go to Shaftesbury Avenue for dinner or pop to a museum. I would also know whether I needed to wash my day clothes or not because I only bought enough for four days. Waiting, and the anticipation of something that is not going embody fun, makes everything seem longer some how.

The unknown…

I am doing what I can, I am monitoring my body and feeding back to the Medically Trained People. Yesterday’s bloods were fine, although my renal function had deteriorated slightly, which may be contributing to my current, permanent hangover, or for everybody else, dehydration. I am also retaining water, which means that I am bulking up, especially on my fingers. They are like big fat sausages. Then you get onto the discussion of how much I am drinking and how much I am peeing. A lot and enough, by the way. I am constipated (suppository not permitted) and a little spaced out. My current side effects are not fun, but they are manageable. What is going to happen next?

The unknown…

Not knowing when I am going in, is getting my head into a pickle on the practical side of things too. If they decide to admit me from the clinic, it is straight forward and I will be escorted across by a member of staff. If I deteriorate out of hours, I may have to be admitted via A&E in an ambulance, as they only reserve one Ambi bed a night. Many people will not be familiar with the layout of my hospital, but the A&E is a five minute walk (or less) from the hotel. The notion is ridiculous. It is a waste of money, but for the Medically Trained People to suggest it, what do they think will happen? I was given a contact number, but I was told that I may also have to call 999.

The unknown… It really is quite confusing, frustrating and damn right hard to manage.

Anyway, I am the queen bee of patience. I have not complained once today about any of this. Not once. Not at all. Not never. I am a brave little soldier after all. I am trying to take it on my hairy chin.

EJB x

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