Tag Archives: MRI

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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Ever Increasing Pain

The quick deterioration of my movement over the last month, has been an unwelcome surprise and it has been something of nightmares. Cancer I can handle. Being bed ridden and unable to climb into the shower? Not so much.

Two months ago, I was worried that my movement had improved to such a point that I could not in all honesty, carry on without contacting the Department of Work and Pensions. Of course, I still had my good and bad days, but on my good days, I could challenge myself. I could almost feel normal.

Then there was a wake up call. A big fat, need my walking stick to get off the toilet, wake up call.

I am now at a point where my movement is so restricted that in the last few days, I have been bed bound, tripping out on a healthy cocktail of Oramorph and Diazepam, contemplating the meaning of life. Needless to say, I enjoy this return as much as I enjoy a Black Forest gateau with extra cherry. In case you were wondering, I do not enjoy a Black Gateau and I most certainly loathe the cherry that any extra would be a waste.

Forgive the length, but the following is an honest assessment of my recent dealings with Mr Pain;

Monday 12 May 2014
I was in Rome, and somehow, I managed to walk five whole miles. It was accompanied by lots of complaining and ounces of pain, but I did it with bells on.

24-27 May 2014
In an act of dogged independence, I repeated Rome’s sightseeing in Berlin, only this time, I did it whilst carrying luggage.

Evening of 27 May 2014
On a train from Southend Airport to Stratford, I decided to lift a 9kg suitcase. This was an error in judgement, I know. The truth is, I forgot that there was a reason why I should not be doing heavy lifting. Subsequently, on a train from Stratford to Dalston and then on the short walk home, I realised that I could not use my left shoulder. The pain was unbearable and it remained so for the next three days.

Thursday 29 May
I had an appointment with the Medically Trained People, during which, I received a royal telling off for doing too much. Fortunately, as the disease was not active, the pain was believed to be muscular. There was another telling off and I was sent for an X-ray or two.

I started to write a blog about me being a forgetful fool. It was full of mega LOLZ, so I apologise for declining you of that gift. As X-rays were a novelty, I also took these rather attractive photographs reminiscent of days gone by.

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The X-rays revealed nothing. I however, had to resort to the dreaded Oramorph to allow me to sleep. It was Oramorph by night and a sling by day.

And then the pain slowly went away.

Friday 13 June 2014
The day started with me starting one of my usual, riveting conversations with Housemate. It went along the lines of ‘do you believe in Friday the 13th?’. He said no, and that was the end of that.

Shortly there after, a sharp pain appeared in the middle of my back to the right. The pain was such that I could not bend. I could not laugh and I struggled to sit. In short, it felt very familiar to me and I was worried enough to inform the Medically Trained People. The pain was also such that I once again, reached for the opiates. I also started double dosing my standard MST dose twice a day from 30mg to 60mg.

That day, was Velcade Day, so I was seen by another Medically Trained Person who tested my leg movement, advised bed rest and sent me for another X-ray. The x-ray had to be done in Accident and Emergency, which is only noteworthy because I had to strip in front of the radiographers. I was wearing a pair of flesh coloured Spanx, so I am sure they enjoyed that. The pain was such that I cried and went home to cry some more. I was offered a hospital bed, but I declined.

Sunday 15 June
The pain persisted, shooting up my spine whenever the opportunity presented itself. I say opportunity, what I mean is, whenever I breathed. It is difficult for me to give an objective opinion about my pain, I’ve had it for too long to be able to describe it. I knew that this pain was different because every time I attempted to get out of my bed, my back felt like it would snap in two. Every time I stood up.

I phoned the on call Haematology line, shamefully, with tears once more and I was advised that my X-rays were fine. I was told that there was nothing that they could do, and I could take more Oramorph and paracetamol. It’s not important to my tale, but the person I spoke to had a speech impediment and every sentence was followed by a low snigger. It was most irritating.

Monday 16 June
The pain had eased slightly, but I was asked to come into Clinic on the 19th. Turns out that appointment was not about my pain, but to be safe, a MRI was ordered.

Tuesday 17-Saturday 28 June
I went into my overdraft using taxis to get me from A to B and back again. On the two occasions when I attempted public transport, I regretted it so much, it reminded me of the last time I accidentally ate a Black Forest gateau. Plans were cancelled, and I spent a considerable amount of time in bed, hating myeloma and everything it stands for. I made empty promises to myself that I would stop pushing my body, for I believed that if I stopped pushing my body, all would be well and my muscles would behave.

During this time, not because I am a badass, but because I value my brain, I chose not to take any Oramorph. I chose functioning over pain. I functioned barely, for there is only so far one can afford to travel by taxi. Peckham Rye, for example, was a no-no.

My physiotherapy was cancelled indefinitely.

Sunday 29 June
I woke up, intent on travelling to Cardiff. I sat on a seat it is customary for all Western Europeans to sit on in the morning and with that act, I screamed as a shooting pain made itself known from my lower spine reaching all the other parts of my body. It pulsated. I stumbled to my room and cried out in pain. I could not describe it, but at the point it happened, I would rate it as a 10 on the medically accurate pain scale.

To cut a long story short, phone calls were made and before I knew it, I was in A&E once more, this time with the privacy to change into a gown, awaiting an X-Ray. Whilst waiting, a finger was placed up my anus.

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The pain was unbearable.

I went for the X-ray, pleased that the technology has advanced enough that I did not need to get out of the trolley. The technology has not advanced enough to get a clear image, but that is by the by. My spine was all a spasm.

Once again, I was offered accommodation, but I chose the comfort of my bed and my flat over a shared ward with old ladies and their commodes. I was prescribed frequent, strong painkillers and home I went. I remained there, spaced out until this morning.

Tuesday 1 July
Today, I had me an MRI scan. It was less painful than I anticipated, but the two diazepams I took prior may have had an impact on my perception of time.

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And now I have to wait… There will be paranoia and there will be pain. I just hope that we will shortly get to the bottom of this.

Myeloma is incapacitating. It needs no further encouragement from spinal difficulties. I will manage my treatment, I do not want to manage the pain on top of it. The pain, this pain, prevents me from living.

I hate it. No roller coasters I can handle. I need to roll over in my sleep.

EJB x

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An Exercise In Paranoia

When it comes to my illness, I am constantly on hyper alert for bad things happening. It’s not really an alert, I now expect bad things to happen. It did not used to be this way, except if you count the time I went to the doctor because I had a cough that I thought was lung cancer, which subsequently turned out to be myeloma. That old chestnut.

These days though, if I experience any change to my body, I fear the worst. I easily convince myself that the worst is coming. My favourite fear, is the thrice weekly belief that the pain I get in my head when I lean to the left is a brain tumour. Let us rue the day somebody said the words ‘secondary cancer’ to me.

The paranoia usually starts from the simplest of things and then, over a period of time, it will slowly spiral out of control to the point where it is all I can think about, am reunited with insomnia and have the constant sensation of needing a poo. I have a perfect example of this mania, which I am going to share with you now, because I am sitting on a train and I have the time and inclination to do so. Enjoy.

August-November 2013
I experience a slow and steady increase in back pain, though torso pain may be more accurate, because that covers my rib area and collarbone as well as my stupid spine.

Thursday 7 November 2013
I share my the tales of my pain with the Medically Trained People and I am told that that does not match my biopsy results, which as you should all know where ‘good’, and thus, I am booked in for a MRI scan. I was rather pleased about this.

Sunday 1 December 2013
I had my scan, which was very painful. You might know this already because I wrote a blog about it, though I am not entirely sure if I published it, because that seems to be the way things are going at the moment. Anyway, I am digressing. It was extremely painful. I found, upon my arrival and after donning the hospital gown, the staff to be dismissive and uncaring when they put me on the slab. I was just told to lie down and shoved right in there; I was not treated like when I came out of the tube. Why was that though? Oh Em Gee, what did they see on the scan? They were definitely taking pity on my, whilst being thankful for their lives even though they were working on a Sunday. The pain would not have been that bad if nothing was wrong, would it? I was informed that the results would be sent to my ‘Doctor’ (fools, everybody knows I have several of them) in a week.

The Following Week In December 2013
Washing the dishes and in my mind, like a big neon sign, was the word ‘TUMOUR’. Then, whilst I was in the bath, a little nursery rhyme appeared in my brain telling me that my L4 was about to snap. I was on the bus and there I thought that it had snapped along with all the other lesions on my spine. Get the picture? The bad thoughts were there and I did not like them.

Wednesday 4 December 2013
In the middle of my imaginative nightmare, I decided to send a casual email about my scan to the Medically Trained People and in the response I was told that the results would be looked at at the Monday morning meeting, and they would be discussed with me the next day when I came in for my velcade. At this precise point, when I was visiting Mamma Jones in hospital after an operation, my paranoia went up a step and then for the next six days, I counted down the minutes until I arrived on the Second Floor for my injection of Cilit Bang.

Tick, tock, tick, tock, something bad was going to happen, tick, tock. Appreciate budding flowers and a clear sky. Tick tock.

Tuesday 10 December 2013
I arrived at the hospital with a slightly sweaty right armpit, which is pretty normal when I am nervous. As soon as I was sitting down in a grey reclining chair, I asked the nurse treating me to make contact with my other nurse, so she knew I was in. Unfortunately, the nurse treating me did not know who I was talking about, so I had to whip my phone out and provide the contact details. I waited. I popped my big toes. Sometime later, I was informed that my nurse was at lunch, but she would call me later to discuss the results. For this reason and this reason only, I turned the ringer on my phone on. And do you know what happened? I did not not receive a call. That evening, the paranoia switched to delusional, with a rather healthy spluttering of swear words, as I imagined the worst whilst being unable to hold my arm steady because of the nerves. I sought advice from the Support Network, who all told me to ring the next day. I then had a few alcoholic drinks to take the edge off.

Wednesday 11 December 2013
I did not call. I did not call because I was due a clinic appointment the following day and aware of my growing mental situation, I decided that as I was definitely going to be told that they could not discuss my results with me on the phone, which is why I had not received a call the previous day, I was best to enjoy my final day of ignorance, before I came crashing down to the reality of terminal cancer. Of course, this did not mean that I did not think about it. I did attempt to bring forward my appointment time, but to no avail. More waiting.

I went out that evening and somebody made inappropriate sexual advances again, and still, all I could think about was the fact that my MRI scan results were going to be catastrophic. Yep, by this point, I was facing a catastrophe. I had a few alcoholic beverages to take the edge off. I did not sleep very well.

Thursday 12 December 2013
Results Day! I arrived at the hospital, but this time, it was not just my right armpit that had a sweat on. I was moist and not in a good way. I made my way to the Fourth Floor and all I could think was, ‘do not give me the Big, Tall Senior Medically Trained Person’ for he is always my bearer of bad news. I’m sure he is lovely, but by default, he’s my nemesis right from the point I met him on 22 August 2012. It was a stuck record in my head. I waited, and this clinic was running particularly late, so I waited some more, watching people go in before me. I cursed the fact that I was there by myself, it was going to be the sequel to Bad News Day, I calculated which friends could get there the quickest. I filled the 50 minutes by taking photographs. They were not very good.

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See? I needed the toilet, I didn’t go. Instead, I spilt my tea all over my dogtooth jumper from Marks and Spencer; it left a stain. In the time I spent waiting, I noted that the Big Tall Senior Medically Trained Person was not there, so imagine how I felt when my name was called and it was by the person who sits above him on the Myeloma Department’s headed paper. I was going to talk gibberish, I knew I was going to talk gibberish, because at this point, I was a dead, stylish, lady walking.

I sat on the pink seat and looked at the Very Senior Medically Person, whilst I attempted to hide my shaking.

And then, the best thing happened, she asked me to remind her of my case, not only that, but she looked at the computer screen a great deal as she caught up on the latest EJ news. That meant one thing, the news was not bad. Phew.

From that moment, I do not really have much recollection of what I said for the rest of the appointment, for I was part relieved, part cursing my stupidity.

As it turned out, the scan results were good. My bones are improving, apparently my spine looks like there is a halo around it. I never consider good news. The increase in pain, I was told, is most probably muscular. I left the room, exhaled and broadcast the results to the nearest and dearest.

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So, there you have it. A mighty fine example of my paranoia. A very similar thing happened last week when I was told I had asthma and a chest infection that required an X-ray. It took a week for me to work up the courage to have said x-ray. I think that was fine too.

The moral of this story is simple. I hate myeloma.

EJB x

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Lazy Sunday Afternoon

A Sunday is a day of rest. Or a Sunday is a day when one can pretend to broaden their cultural mind. If the gods are feeling kind, a Sunday should also be a day free of the hangover. I was able to experience such a Sunday on Sunday, well, apart from the MRI scan smack bang in the middle of it all. Apparently UCLH is open for non-urgent scans on a Sunday. I got the impression the staff wanted to be there as much as I did.

Prior to Sunday, I had had two MRI scans in My Myeloma life. The first scan, in the happy days of August 2012, remains, without a doubt the most painful hour of my life. My spine does not like metal slabs, in case you were wondering what to get me for Christmas. The second scan, understandably was met with irrational fear of me unable to sit up at the end of it. I do not need to be reminded of my fear, because it permanently squats in my head, but if you want to be reminded of it, go for it (https://ejbones.wordpress.com/2013/01/13/oramorph/). After all the thought and panic, that scan turned out to be fine, if I recall, I was elated after because I could do it and I became another. I could lie flat again!Going in to Sunday, I assumed my experience would be as it was before. I just assumed the wrong before.

In the last few days, I have been asked to explain why the expensive machine me feel like I was being tortured in a Tiger Tiger, and the the answer is simple; because I was lying down flat in a white metal tube half scored by poor sound quality modern ‘dance’ music and mania. I was not exactly flat, I was on a metal slab, with my arms crossed on my chest whilst my legs were raised on a foam cushion with my feet left dangling, with my neck was clamped down in a collar attached to said slab. In that position I stayed for 45 minutes, perfectly still, apart from some involuntary movement. I looked like The Monster and not The Bride. After ten minutes, I wanted to escape, but it was your tax money paying for the scan, so I persisted. The pain permeating from my lower spine, was worsened by my neuropathy. Here is a tip; velcade plus unsupported feet plus stillness does an excruciating dead right had side of your body make. Unfortunately, I was shoved into the big old tube with headphones on before I could tell the radiographers that I, being the special person I am, would need my feet supported.

My pain was such that I had no sense of time. It was such that I had to be assisted up at the end of it, and I really hate that . The pain was such that a dulled version of it remains. Hell, I even had to postpone a cinema outing because I would not have been able to sit still. Given the evidence to hand, it is probably wise for me to have had the scan. Let us hope that it only reveals lesions.

I find the fact that I can and do experience such levels of pain, that I am reduced to tears, embarrassing. I also find it shameful. Every time it happens, I blame myself for it. I blame my body and I get angry. I am hard. I have a high pain threshold. I should be able to deal with it, especially by now, it’s that simple. I’m sick of being a broken record. Now, my counsellor said I do manage it, but my irrational side sees any pain, as a defeat.

Back to Sunday, however. To make the experience even worse, prior to the big metal tube, as I slowly stripped in Cubicle 6, I realised two things. First, I was wearing tiny knickers. Secondly, I had forgotten to do something that if I was a lady who was unexpectedly getting on with a handsome man, one would be in dire straits. I discovered that those legs, my legs, were quite hairy. Visibly hairy. As it dawned on me that I was braless, prickly, still wearing my socks in a hospital gown I could not do up properly, wearing a tiny knicker, I felt self conscious. I am not at my physical peak, by a long shot, so I panicked. So, what do you imagine I did? I took a selfie. A selfie in a hospital gown.

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Enjoy.

And then, I walked into the corridor and exposed my buttocks.

I suppose that is a nicer story to remember than the pain.

In case you are wondering, today I am wearing a big knicker. Two pairs. Nobody is going to see them.

EJB x

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Boney Joney

There have been few moments since I was diagnosed for me to celebrate. Diagnosis, fractures, chemotherapy, hair loss, nausea and fatigue have been my rewards thus far. Sure, I have celebrated when my paraprotein’s gone down, but with hindsight, my previous celebrations have been premature. I celebrated after the first cycle because I got a 35% reduction, but then the reductions slowed and the level plateaued. I got to have Christmas with my family because it went down by three, but the end result still means that I have to have a stem cell transplant, just three months later. In the long term, this may be to my benefit, but we do not know that yet, so I am keeping those celebratory flags in the loft for now.

On Monday however, there was need for a balloon or two, or maybe a slice of cake, for cake has more purpose than a celebratory balloon. It smells better. Getting good news is rare, so I had a day of relishing in it.

On Monday, I got my MRI results. Not the full results, I am still to do that, but I got the headlines. The hardest thing I find about living with myeloma is that in addition to the disease itself, I have the pain. Correction, ‘chronic pain’. Must not forget the Chronic Pain; it’s been my friend these eight months at least. I always think that the disease would be easier to manage if I could bend over or do a jig, but alas, myeloma does not give you the option of one or the other. I get branded by cancer and I get pain. Silly bones. Silly lesions. My Myeloma.

It’s not all doom and gloom though, for that is not how I roll. I am Glass Half Full.*

On Monday, I found out that my bones have not got any worse since my first scan in AugustYay, party. In fact, my bones have improved. Yay. PARTY. The treatment I have been on, as well as giving me a partial response has started to mend my bones. I do not know the full results, but I imagine, that there is still a long way to go, and I shall be in a relationship with morphine for a while longer. But if it stays the same, I can manage it. I have got this far.

As annoying as the bones are, knowing that they are improving offers me an immeasurable amount of relief. I live in a constant state of paranoia that every turn of the head, every click of my neck, every digging pain in my lower back, is a step closer to paralysis or a sign that It is getting worse and the Medically Trained People have missed something. Knowing it is getting better, at whatever speed it is getting better, makes me feel better.

My results buy me some peace of mind.

My results, as silly as it sounds, lets me focus more clearly on the next hurdle, on my transplant.

Thank swear words for that.

EJB x

* Excludes drug enhanced mood swings, premenstrual tension, tiredness and hunger.

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Testing

Friday, was a Test Day. For the first time in what seemed like a long time, I made my way to UCLH and let people prod me.

The first test of the day, and one that came later than scheduled due to the snow, was the much anticipated MRI scan. In the week leading to my scan, I had managed to get myself into quite a panic, based on the fact that my first MRI scan was so horrible. I did not think that I was capable of enduring the same level of pain. The second test was a straight forward ECG. The only challenge I anticipated with that one was the walk in the snow from the Macmillan Cancer Centre to the main hospital.

Last week, I had been going back and forth in my mind whether to do the deed with the aid of drugs or without it. I went as far as requesting the drugs, but then within a few hours, I had changed my mind again. Cancer related issues really are magnified. My Big Sister rightly pointed out that if I did take breakthrough pain medication for my scan, I would always wonder whether I could do it without. So, like removing a plaster, I opted for no drugs. It would appear that I like a challenge. I chose wisely.

Once I had managed to actually get to the hospital, after a wait of two hours, I selected the really cool and edgy tunes I was going to listen to in the coffin, before stripping. Despite having to have worn quite a few now, I still find it marginally exciting when I have to put on a hospital gown. I personally think they are beyond sexy. Nothing says attractive like a patterned gown covered in stains that opens down the back to reveal ones cellulite and lace knickers. The fact I was wearing them, was not a coincidence.

Some of you may not know what an MRI scan is. I am still not sure what sort of imagining it provides, but I do know that you have to fill out and sign a questionnaire to confirm that you are not pregnant and that you have not swallowed anything metal, there are more questions, but you get the gist. I also removed all my jewellery, just in case it is cheaper than I believe it to be. My friend asked me last week whether it is the machine that looks like a donut. I responded with a “no, that’s more like a CT scan”, but as it turned out, my memory of what an MRI scanner was like, was thankfully, flawed. There was literally light at the end of the tunnel. The machine before me eyes on Friday, did indeed look like a donut. An incredibly dense. I swear the first machine, did not have a hole at both ends, like this one. The room also seemed brighter, perhaps that is because I was not on any medication and thus, I was not as high as a kite.

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Artist’s impression

Nervous, I got on the slab and was relieved to feel foam and not metal. I informed the technicians of my album of choice and that I may have difficulty getting up at the end. They put the panic button in my hand and the headphones on my ears and in I went. It was much better than last time, instead of resembling a coffin, I saw The Light. It was beyond bright in there. The Greatest Hits: Volume 1 by Queen attempted to drown out the noise, but failed miserably. At least it made the 40 minutes pass quickly enough. There is nothing like listening to ‘Another One Bites The Dust’, while being greeted by a bright light and loud banging, to make you think about the meaning of life.

Halfway through the scan, I realised that I would be able to get up at the end by myself, and that I did without the aid of the two people (one had changed to a man, I believe to help with my weight). I was more than pleased with myself that I could do it and I braved the situation without the aid of Oramorph. Now, I have to blank out what the test will find, because it would be just my luck, if it picked up a tumour…

After that, I collected my drugs, after a half hour delay due to a clerical error and walked the short distance to the main hospital. It turns out that that was the scariest point of my day. I am not a fan of the snow. I hate My Myeloma for that.

The ECG was better than my first ECG which was a firm reality check on my first night at UCLH back in August. That test involved a lot of palaver with my pyjamas, bra and boobies, that my pride would not want to see repeated. My first impression on Friday, was that the lady taking the test did not have a considerable amount of job satisfaction. She was, actually, down right rude. “Naked from the top half please”, was her greeting. I complied with her request and hopped onto the bed. She told me off twice for not relaxing my shoulders, and then put the stickers on my naked torso with a fair amount of force. I asked her if she could not press onto my ribs quite so strongly because of the fractures and her response to that was to tut. Her care was amazing. Perhaps she had see me eat a Twix, okay two, whilst I was waiting and that sort of gluttony is frowned upon in Cardiology Outpatients. Once the test was done, she said “your nurse will get the results”, and with that she walked out the cubical into the next one and said the same things all over again. I must say that my favourite part of my ECG was when she picked up my left boob to put a sticker underneath it. That’s right, I said picked up. They are that saggy. In case you were wondering what an ECG looks like, I took a photo. It is a heart test.

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And then I went home and reminded myself that tests are so much easier than treatment. It’s just my overreactive brain that makes them worse.

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Oramorph

I mean no disrespect to the manufacturers of Oramorph when I say that I do not like it. Instant pain relief in the guise of orally administered morphine, whilst it does offer pain relief, is not my friend. I decided quite quickly into my journey that unless my pain is so bad that I cannot walk, I will not take the stuff. I may have mentioned it before, for I am frequently telling others looking for flattery… I forgo breakthrough pain relief to allow me to converse with others. I sacrifice the body for my brain and I want a tap on the back for that. Or at least a smile, so I know that the person is thinking “wow, she’s a brave lass.”

I am not going to shy away from this, Oramorph makes me high, but not in a good way. It makes me slow and it makes me sleepy, and if I were ever brave enough to listen to a recording of my voice, I would have evidence that it makes me slur. Apparently it also has addictive qualities, which was a concern, given my penchant for beer, cream and EMan. I had to take it when I was in hospital because my pain was that bad and I did not understand what pain management meant. When I returned home and tried to conduct my day to day affairs, it was a struggle to do this on Oramorph and while receiving chemotherapy. The latter won out and a developed a Cancer Rule.

That said, I am contemplating taking a dose of the sweet liquor this coming Friday. I am booked in for a MRI scan and the word best used to describe how I feel towards my scan is ‘apprehensive’. I am not apprehensive about what the scan will find, that will be what that will be. I am apprehensive about how I am going to lie on the flat metal slab for 45 minutes and then get back up again. I am pleased I am getting a re-scan, I have pushed to have one for so long because I need to know what is going on inside my body, I just wish the Medically Trained People could get the images without me having to experience any pain.

An MRI scan involves me being buried alive in a dark metal tube for 45 minutes as it makes sounds akin to my one year old niece hitting the dogs’ metal water bowls against Mamma Jones’ tiled flooring. Constantly. The last time I had an MRI scan was on the 20 August, the same day I was formally diagnosed and the same day I had my bone marrow biopsy. I can say that getting up off that slab at the end of the scan, transferring myself to a wheelchair, to then transfer myself to another wheelchair in the clean room and then to wait 50 minutes to be collected by a porter, was the most physically painful thing I have ever experienced, despite the 10ml dose of Oramorph I had before I left my hospital bed. I do not want to experience that pain ever, ever, ever again.

It was at that point that I stopped lying flat. Another Cancer Rule.

Things are slightly different now. I must remember this. I have had a Kyphoplasty and more often than not, my pain is managed. I can lie flat for a short period of time, let’s say for something pleasant like radiotherapy, and only experience mild discomfort. I am going to have to keep telling myself this over the next five days, so that I am able to lie in that metal tube and so that I do not wake up in the early hours panicking that my Oramorph is at Mamma Jones’ house.

It is, after all, a means to an end.

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