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

Chalky

[Instrumental]
Calcium – The Future Sound of London *

Calcium = 2.16. Apparently that does matter. Who knew.

In the melee of figures that go with having regular blood tests, I’ve learnt to focus on the few that really matter. Normally, that means the indicators of blood cell types, and of course indicators of myeloma. Every now and then, my attention is drawn to something else (I had a crash course in liver function indicators, many moons ago.) One number I have consistently ignored has been my calcium level. Active myeloma can cause hypercalcemia (too much calcium in the blood). But my calcium has been consistently low (hypocalcemia). This is almost certainly a consequence of the bone strengthening drugs I’m still on (though next month may be my last, with a bit of luck).
Every time I go for treatment they tell me my calcium level is low, but treat me anyway. I then take calcium supplements for a few days, before forgetting all about it for another month.
Since the summer, I have been having consistent abdominal muscle pain. This has been a site of much unpleasantness in the early days (spasms due to vertebrae damage in the beginning, and then sporadic flare ups during my initial treatment), so its recurrence has been disconcerting as well as painful (though nothing like the pain of old, when I was unable to stand up without searing agony).
I tried to put the “what if…”s to the back of my mind and focus on addressing the symptoms. After a lot of (yellow) English mustard (turmeric, which is yellow, is good for muscle spasms – among many other things, so English is better than less-yellow-French or more-added-colouring-American!), some amitriptyline** (short term relief), and a bit of stretching exercise (if anything, this made it worse), I seem to have settled on an answer… increased calcium. I’ve been getting through a lot of chalky calchews.
Sure enough, today’s test results shows higher calcium levels than ever – actually in the normal range – and at the same time my muscle pain has gone away. The nurse today agrees the two could easily be connected. Not that anyone volunteered this fact to me until I’d worked it out for myself. Apparently – she fills in the science bit for me – mineral imbalances between in-cell and out-of-cell levels can lead to pressure, and so pain, across stressed muscle areas… so for me to experience it in my abdomen is not really that surprising.
Having myeloma is a bit like switching the body’s blood machine from automatic to manual – things which used to auto-correct themselves now have to be actively managed. What a pain. Or not a pain, actually, right now.
* I was unsure whether I am allowed to put an instrumental in as my lyric quote. And then I remembered it is my blog. So I am the arbiter of the rules, as well as good taste, in this space. I can see it will pose a little problem for those of you who don’t know it… So here’s a link to listen on youtube. And of course, it is today’s contribution to RadioM. for those on spotify.  Seminal early 90s ambient techno. And the first album I discovered while at university.

** Google’s spellchecker doesn’t recognise the word “amitriptyline” and wanted to correct it to “pantyliner”, but I haven’t tried those, so I can’t tell you if they are any good for my muscle cramps, I’m afraid.

Bloodthirsty

       Lizzie Borden took an axe and gave her father forty whacks.        When the job was nicely done she gave her mother forty-             one.

We have a fascination with the gruesome. Zombies, murderers, paranormal hauntings and all of it, …well, gruesome. The more blood that sprays into the 3D audiences or splatters against the wall, the better. It makes me wonder whether people have become so removed from one another that our empathy level has decayed.

We can watch the television or have YouTube show us visions of the wars or the sick minded lunatics cutting off people’s heads and the audience numbers are remarkably high. We even flock to see stories of medieval battles between hundreds of sword and ax bearing behemoths and the more blood the better. Even scenes of naval battles What is it about horror that’s so attracting to us?

I wonder if maybe it’s because pain isn’t very well represented. The handsome Navy seal overcomes the bullet holes in his leg and abdomen to limp into position to support his team. As if his body might allow that. Sure, there can be a honeymoon period of a few minutes where the trauma of the wounds short circuits the pain. But then there is little a person can do besides lay there, trying not to move because to do so is too excruciating to describe. Many can only lay there and scream until someone injects them with morphine.

I know that the pain I have experienced because of my cancer has been bad enough to scramble my thoughts and freeze me in place because any motion in any direction flares the pain. Think about having an abscessed  tooth drilled  through the nerves without benefit of anesthetic and then multiply the agony. Pain is nothing like the way that it’s portrayed. A man suffer a battlefield amputation of an arm and then take up his weapon in the other hand to finish off his opponent.  Those with pain tolerance may lay with gritted teeth, growling. But the others lay there screaming until they bleed out or the pain knocks them unconscious.

And we flock to screens to watch this. I grant that I have watched some of these movies, but the more time goes by and the more I have my own pain to deal with, the less tolerance I have to watch people suffering. I would guess that my own experience has raised my level of empathy to the point I will get nauseous watching blood spraying injuries inflicted on people.

The thing is, I can’t understand the fascination in general. I can watch a thriller in which people get shot. Somewhere there is a limit to what I can experience before I’m ready to move on to something more pleasant. I didn’t feel like this when Die Hard came out. But my stomach crawled as Bruce Willis moved barefoot through the broken glass strewn across the floor leaving bloody footprints. I guess it’s natural to try and raise the bar so that newer films don’t suffer from desensitizing and keep the audience coming.

I can still be wowed by violent movies. It’s just that there is a line they can’t cross before it’s just too grotesque or just too fake to keep my attention.  And zombies. Wasn’t their being killed once enough we have to kill them again, and in horrific ways?

As it is, there is tremendous suffering all over the world. It takes many faces and perhaps those faces are too bland to be attractive or exciting. Or perhaps we are becoming desensitized to suffering and that’s why millions get invested in the depiction of agony and real life pain goes begging.

The Gippy Tummy

In the last few weeks, I have learnt many a lesson (okay, four lessons). All the lessons revolve around the medical wonder that is radiotherapy; my view of which has changed quite dramatically from when I previously had the NHS brand my who-ha in October 2012. In short:

• Radiotherapy is not easy
• Radiotherapy whilst you are undergoing chemotherapy treatment is definitely not easy
• Never ever ever wish for a gippy tummy
• If you are a female, always prepare for a radiotherapy session as if you are about to wear a string bikini in public

Since my trip to Casualty in June, I have wanted one thing and one thing only, and that one thing is radiotherapy. My pain at that time was such that I believed that fixing that pain was the only way I would be able to make it through my current treatment. On my worse days, my survival hinged on fixing my pain. Do not get me wrong, I loathe chemotherapy just as much as I know it is a necessary evil, but try being on a course of treatment when you cannot bend down and pick up your bath mat, sit on the toilet or pull yourself out of bed. Maybe reducing my paraprotein should be my priority, but it is not. My priority has and continues to be fixing my back, so I can then focus on that pesky paraprotein. Battling the two at the same time takes energy, more energy then I reasonably have. I’ll use my energy on both if I have to, but my effort in doing so is a disservice to both. My pain has taken away too much of my freedom and I just want to reclaim some of it.

The journey from discovering the first twinge of back pain on 27 May, to completing my course of radiotherapy treatment on 29 August has been mercifully quick. Three months may sound like a long time, but all things considered, it has not been that long at all and that is just another prime example of the brilliance of the NHS.

It may have taken a month or so to convince the Medically Trained People, with Operation Radiotherapy, that I could not wait to see if my treatment alone would heal my back, but once that was agreed by the end of July, everything else happened very quickly. Operation Radiotherapy was far from subtle and essentially involved me only talking about my pain during my appointments, much to the dismay of Big Sister who wished for me to discuss my treatment plan. I may not have been subtle, but neither was my pain, which had decided to occupy almost every waking thought, especially the thoughts that came when I attempted to move in my sleep.

On the 6 August I was informed that I would be having radiotherapy and it was most probably going to be in the form of five sessions over five days, targeting the tumour around my L5. I was ecstatic at this news. I know I was ecstatic because I wrote a blog about it. It was during this appointment that I was told that I may experience a gippy tummy as a result of the radiotherapy. Thirteen days later my treatment began.

I did indeed have five sessions, on five different days, but due to the Bank Holiday and my need to see Kate Bush in concert, it actually happened on a Thursday, Friday, Tuesday, Thursday and a Friday. A week prior to the first session, I had my planning appointment, which featured two new tattoos and a CT scan. By the Tuesday session, I was incredibly relieved that I had some respite between zaps and I was not due in everyday. I do not think my body would have been able to handle it. It was a four-five hours a day for two minutes of radiation, and I am a weakling.

The Radiotherapy Department at UCLH is a strange place. It is in the basement of the tower and thus as I waited, I had no phone signal to keep me company. The waiting areas are very much designed for patients receiving the treatment for usual cancerous reasons. They were not designed for people getting radiotherapy to ease their pain. It may sound like a small thing, but waiting for upwards of an hour on a hard departure lounge style chair is not something my spine particularly enjoys. Add that with having to lie down on a slab for ten minutes, bookended by hour plus journeys in a suspension free ambulance chair and what I got was immense jarring pain.

In the secondary waiting area, the opaque windows are adorned with pictures of butterflies and stars accompanied by quotes about the brilliance of nature. This of course, made me guffaw at the thought that somebody, somewhere, believed that this would relax somebody with cancer. It was in stark contract to the stark room with the big whirling machine hidden behind a maze of iron lined corridors. In these rooms, there are six identical rooms, there was a screen for me to protect my modesty as I removed the bottom half of my clothing. I am not entirely sure why I needed to protect my modesty with a screen, when my knickers would be pulled below by bum during each session, when I was lying on the metal slab, with a piece of blue paper over my nunny.

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I found the whole thing incredibly exhausting.

After the first, second and fourth session, I vomited. Vomiting is not a side effect I am particularly used to. I thought I was used to everything. I may have had a stem cell transplant, but vomiting, thankfully, bar a few other occasions on my HRT, had been my only experience of being physically sick. Nausea sure, I live with that daily, but vomiting to me symbolises being unwell and until I experienced cancer, is one that I heavily associated with people having cancer. On the fourth day, I lost a very nice sandwich from Benugo’s. I did not like it. It made me feel like I had cancer.

On days 1-5 and for several days post, I experienced extreme fatigue. After the first session, I got into bed at 19:00hrs and emerged the following morning. Three days after my last session, I was so tired, I forgot that I was crashing on my steroids. Fatigue was not a side effect I was told to particularly expect, but I think that radiotherapy and chemotherapy is something of a toxic mix, and my body was just displaying that for all and sundry.

On the fourth day, I also had my regular clinic appointment, during which I lambasted the false claim that I would experience a gippy tummy. I did this because I am a fool and did not associate vomiting with what one could consider a ‘gippy tummy’. I was just fed up with being constipated that I thought I would welcome a good, thorough cleaning. The treatment finished on a Friday and by Sunday, I was cursing myself and the pain in my stomach. By the Monday evening, after I had spent four hours on the toilet clearing my bowels, I was cursing the radiotherapy. I am a self styled ‘Strong Ox’, but slipping off a loo sit because my naked body was drenched in diarrhoea induced sweat, was enough to make me doubt my stoicism. The next day, Haemo Dad put me in his car on the advice of the Medically Trained People and took me to A&E.

I like to think that my four hour adventure to Peterborough City Hospital was not an overreaction and was a well considered precaution. It was a precaution for many reasons, not least because four days before my neutrophil count was 0.85 and there was a fear that I had an infection. To me it was a necessity because I needed reassurance that everything would be okay. I know many side effects and I know how I should feel on almost every occasion. I had no idea what was happening to me and that scared me.

Haemo Dad had to go off and do some Haemo stuff in PCH, so he was replaced by Mama Jones who waited patiently with me until I got the okay to go home after I was given some fluids and IV paracetamol. As an aside, I can confirm that IV paracetamol can give one a nice, deep sleep.

In my private room, having waited for five minutes to check in with my fellow citizens in the reception, I was rather impressed with the treatment I received. It was thorough, and it was delivered by a Person Medically Trained Funded By The RAF, which led me to seek confirmation that I was not hallucinating. Obviously, for anybody who has ever inserted a cannula into my veins or has been present when somebody else has inserted a cannula into my veins, I was rather less impressed by the size of the cannula (I think I am spoilt at UCLH), or the blood that bled when the tube was removed. It is 15 days later, I still have a bruise.

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Evidence that I made a third visit in two years to Peterborough’s A&E.

After six more days of sleep, liberal doses of Buscopan, and a £34 round trip to have my bloods done, I felt back to normal. As I said to my CNS, normal to me means heavily constipated. As well as feeling constipated, I also felt embarrassed that I went into my radiotherapy thinking that it was nothing. Not only nothing, but I went in thinking that it would be easy and welcomed the predicted side effects. I was wrong. I would not want to go through it again any time soon.

Time will tell whether the treatment worked. This week, my back hurts more than it has for a month and I hope this is a sign of the radiotherapy is working. I just don’t know. If this whole affair has taught me anything at all, it is that when it comes to My Myeloma, nothing is ever certain.

Decorum

There were two events yesterday, two and a half really, which proved to me, if I needed anymore proof, that I now have absolutely no decorum whatsoever. The subject in question, was of course, my faeces or my lack there of.

Everybody requires a little bit of context and this is mine. I am currently on six tablets of docusate sodium a day plus two senna pills before I go to bed, and still, despite this hefty dose of laxatives, going to the toilet continues to be the bane of my daily existence. In case you were wondering, myeloma is the bane of my world. At least once daily, I also have a portion of linseed, which I believe gives the medicine a healthy, natural helping hand. Linseed also means I occasionally have to visit a Holland and Barrett, thus allowing me to feel superior to the unhealthy masses, that is, until I look in a mirror.

I have long been of the opinion and voiced it several times, that constipation is one of the biggest, unspoken downsides of my medical predicament. I had an appointment with a Senior Medically Trained Person recently, who I had not met before, but Mamma Jones once saw on the television and I instantly took a liking to him when he asked me about the difficulty of my bowel movements.

In that appointment, he told me that one side effect of the radiotherapy would be a slightly jippy tummy. It was a statement that solidified my positive opinion of him. I have now had three sessions of radiotherapy and that particular side effect is yet to appear. I am forgiving him of that, if in a few weeks time, I am able to sit on the toilet without a fear of snapping my spine in three when the struggle ups it’s game.

That is the unsavoury background to my daily (if I am clutching the glass half full), trials and tribulations. I will indeed talk about them to anybody who is willing to listen. The only difference is, depending on the company, I might deepen the code of the subject in which I speak.

Yesterday then, I had a particularly traumatic morning. I had to be up and dressed by 10am, ahead of the Patient Transport Service collecting me for my two hospital appointments of the day, the first of which, was at midday. The PTS can pick me up anytime between 10:00hrs and my appointment time two hours later. As such, stage fright usually kicks in and I cannot pass what needs to be passed because I need a clear 30 minutes to do it. Unfortunately for me, the biological need kicked in around 11:15hrs, shortly after I discovered my transport was not in fact, picking me up at the agreed time. In a panic, I booked a taxi and then visited the room between my kitchen and my bedroom. It was an act that was indeed a mistake for there was not enough time for me to do what needed to be done.

This brings me to my first example. Mid act, I had to give in. As I uncomfortably made my way through my flat to the waiting taxi outside, I said something to Housemate that does not need to be repeated here, such was the level of my crudeness. All that needs to be said is that it Is a term usually reserved for the delivery room in a hospital.

It was a very uncomfortable taxi ride, during which, it became apparent to me that I was going to have to be late for my counselling appointment at midday. Not wanting to be rude, I thought it necessary upon my arrival at the Cancer Centre to inform the relevant people that I may be a little late to my appointment.

Most people would probably have asked the the lady on reception to inform my counsellor that I would be late and send my apologies. Not me. In my second example, the conversation went something like this:

“Hi, I have an appointment with Sxxxx at midday, but I am going to be late…. I have a problem. Not a bad problem you understand, but the one people get with their medication that they don’t really talk about… You know… Um, I just really have to go to the toilet and I’m really uncomfortable and it might take a while. Can you let her know? I’ll go down to her office when I am done.”

It was a conversation that was greeted by a knowing smile, and off I went. Fifteen minutes later, with a large smile on my face, I returned to the reception desk to see smiles all round. I then proceeded to discuss matters in more depth for five minutes more.

Later in the day, I received a text message from a dear friend of mine, who is also experiencing similar woes, and what followed was a lengthy, open discussion about my troubles of the day and the effectiveness of linseed. It was that conversation that confirmed what I have long known… Cancer causes constipation and I absolutely love shouting it from the rooftops.

The Regimen

When it comes to the hospital and my appointments at the hospital, I am a creature of habit. It’s comforting for me to know exactly what I am going to do when I get to the hospital, know exactly who I am going to see and where I am going to sit. UCH’s Haematology Department has long facilitated my need for routine. I come in, I bypass the accepted booking in procedures, I go to the fourth or second floor, via the lower ground floor and I am done. Along the way, I will come across several faces who have seen mine before and are kind to it. I am made to feel special and that my pals, is because I am.

Today at the Cancer Centre, otherwise known as my office, I was in a state of flux. My routine had been altered. I was not being seen by anybody on the second or fourth floor. I was forced, forced I tell you, to check in with all the other mortals on the ground floor on self service machine. On a machine! Instead of just disappearing to a place where people can identify my clinic by my face, I had to wait on the ground floor for my name to appear on multiple large tv screens. I think I have only done this once before. Not one to voluntarily fade into the background, I decided that the best way to wait for my non-Haematology appointment was to tell anybody who knows me that I did not know what I was doing. It was not a lie as such, because I did not quite know how the clinic works, but I will put my hands up and say that I was being a little needy.

I chose not to wait for my name to appear and instead asked a volunteer to inform me of the event, so that I could sit in the air conditioned abyss that is Macmillan Support. I did not ask just the one volunteer either, I asked at least three people to tell me when my name appeared in lights. I think, I was excited about the appointment ahead of me. As it turned out, the preparation I felt was necessary, was in fact, unnecessary. The appointment system at the centre, which I chose to never follow, is rather slick, and I was sent a text message informing me that I needed to visit the first floor.

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Technology is just a wonder

I will be honest, I did not like the first floor. The flooring was loud, and the other patients felt the need to monopolise the seats and bash me when they walked passed. It’s okay though, I gave them all the eye and took a photograph of the artwork. Also, and most crucially, the staff on the floor did not give me the recognition I usually attract. Again, with the special. I am special.

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Trust me, this was not age appropriate

Fortunately for me, when the time came for my actual appointment, a mere 30 minutes after the initial appointment time, I got that special treatment I demand and expect. The Medically Trained Person, who specialises in radiotherapy introduced himself and said that we had not met. I was unsure about this statement, but he confidently told me that if he had met me, he would have remembered. Obviously, this made sense to me and I took him at his word.

After five minutes, it was clear to me that stepping outside my myeloma comfort zone pays off sometimes. It has taken several weeks of talking to the People Trained in Myeloma to get a referral for radiotherapy. It has been a subject that has never been far from my mind since I heard the word ‘relapse’. Even today, I feared that the appointment was just a referral and I would be told that radiotherapy would not achieve anything. I just wanted a chance, something is better than nothing has been my motto. It looks like the Medically Trained People agreed, for my appointment was simply designed for me to sign a consent form. Radiotherapy is a go. I repeat, it is a go.

I have every hope that it will pay off, for it has been confirmed that in two-three weeks time I will be having five sessions of radiotherapy on my lumbar region. I simply cannot wait. I had radiotherapy on 22 October 2012, and I have not been bothered by my hip since. Sure, I’ll have to spend five days in the Radiotherapy Department, where if memory serves, one is spoken to with a constant head tilt, but if this means that my pain reduces by a fraction, it’ll be well worth it. In fact, I would go as far as to say that it would mean a great deal to me. If successful, it may even permit an uninterrupted night’s sleep. I am a simple girl with simple needs.

I have had radiotherapy before, but I do not feel the need then was a great as it is now. As a bonus, I was informed by the Medically Trained a Person that not only was he going to fix some of my damaged bones, a side effect of doing so may be loose stools. Score.

The Ugly Grey Chair

I am currently in heaven. Not actual heaven, but a disinfected, grey reclining heaven with a remote control, foot rest and neck support. In short, I do not want to move from the plastic covered cloud I have found myself on, even if it is located next to three of the most miserably rude people I have ever come across in clinic.

I have sat in one of these grey chairs before, several times in fact, but never have I ever truly understood their beauty and power until today. I was shallow and could not see past their appearance. My treatment has concluded and yet I remain in this seat, because for the first time in what feels like an age, I am comfortable. Maybe I have spent too long paying attention to the big red chairs. All flash, no substance. I should have known that ugly but supportive is better. Maybe I should apply this theory to the gentlemen, if there were in fact any eligible gentlemen out there able to make me feel as good as an ugly grey chair.

The fact that I have not been able to get comfortable is not a secret. It is not groundbreaking either, much to my dismay. Warning, do not put me on a hard fold down chair. Bad things will happen. Everything, whether it is a bed with a memory foam mattress, a sofa, a chair, a cinema seat, a bath, the toilet seat; nothing offers sufficient respite to my spine. Every position is noticeable, and movement from any position is followed by a comedic groan designed to disguise the level of pain I am actually in. I sound like a broken record. At this precise moment in time however, I am not. The record has changed. My bum is snugly tucked between the arms of the chair and for added razzamatazz, I have two pillows behind my back. Any minute now, I may start to make embarrassing noises.

The purpose of this new found comfort today, is the bone juice. I have come in for some bone protecting awesomeness. I have been looking forward to getting my bone juice all week. Zometa, I have previously discovered will buy me a few days of lesser pain. Not feeling my spine on this waterproof lump is a bonus. I was not anticipating that administering said drug would feel like a massage and a warm jacuzzi all in one.

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Lush

People are looking at me now. This is the NHS, they need the seat. I just do not want this comfort to end. Sod medication, this is treatment. It says something about my current physicality that sitting in a chair next to three ruddy faced blobs, is my ideal, but that is just the way my life is at the moment. It’s an ugly grey chair.

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EJB x

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

Cilit Bang – User Survey Spring 2014

Today is a Friday and thus there is 50/50 chance of today being a Velcade Day. Velcade Day always promises to be eventful and by eventful, what I actually mean is a day that features waiting, a short sharp scratch or three and fatigue. The following fortnight between the next Velcade Day will feature fatigue, pins and needles, dead limbs and an attempt at living.

Today was a Velcade Day. I awoke with great enthusiasm at receiving what will now be my 51st injection of the magic bleach. Alas, that did not happen. My Velcade has been postponed due to an increase in the side effects from it, which as I have said before feels like I have rubbed my hands and fingers in fibreglass. Occasionally, it feels like I am shooting lighting bolts from my toes whilst something simultaneously attempts to remove my toe nails. More often, my limbs will go dead after a short period of rest. Since my last injection, I have also noticed an increase in me dropping things. I need little assistance in being clumsy. Last week, whilst reaching for some toilet roll for reasons that are obvious, I dropped the roll and recreated an advert for Andrex minus the Labrador puppy.

So, yes, no Velcade for me today. Instead, I get to wait a fortnight to see if things improve and the Medically Trained People will then decide what to do next. I suspect, I will continue on the disinfectant, but it will be more like a dose of Detol kitchen cleaner than the full Cilit Bang.

Recent events create a mass of questions in my head about the future and length of my remission. It is further complicated by the fact that I was told a fortnight ago that my treatment would come to an end in five more injections. The week before that I was told my treatment was indefinite and today I was told the same thing. In my life, I value consistency and people not getting my hopes up.

On the subject of consistency, as much as I appreciate everything the Medically Trained People do in the wonder of 60 Huntley Street, the timely administration of my Velcade is an annoyance. In the last 10 weeks, only one of the six appointments have gone ahead without some sort of glitch. The most popular cause of delay is due to the Pharmacy not making the big juice in advance of my arrival. The same thing happened today, it was then made by the people in white jackets, to then find out that I would not have it. Ever the cautious tax payer, I hope it now does not go to waste. Maybe that is their argument for not making it before I get there, but I am a busy woman. I do not want a two and a half hour appointment for something that can take thirty. I value my employment.

Right, I think that just about covers where we are with my treatment. But before you jump out of your socks, ecstatic that I will no longer get my Velcade fatigue on Sunday and Monday, I did still have the bone juice today. The bone juice, as much as they say it should not, has sent me to bed. And thus, the normal Velcade Day feeling resumes.

I have got that Friday feeling. I think it feels different to yours.

EJB x

The Mobility Enhancer?

Today, apart from the work and the tiredness and normal feelings of insignificance, I am awash with excitement. Dare I say it, the excitement is palpable, that is, if I had not spent my day talking about risk management. I am excited because tomorrow marks my first physiotherapy appointment.

A build up to anything causes excitement, or apprehension, if your glass is half empty. On this subject, my glass is three-quarters full. I was referred to the physiotherapist in December and a mere four months later, I actually get to see whether it is worth it. It’s been a longer wait really, for I asked for a referral when I was on PADIMAC, way back when in 2012. I believe on that occasion, my request was immediately dismissed as folly.

So much hope for my immediate future rests on the success of it. One could say that I am setting myself for disappointment, but keep up, my glass is half full. I do not have a barometer for improvement, I do not know what improvement will look or feel like. Right now though, I think that anything is better than what I have right now and what I have right now, much to my initial denial, is chronic pain. That is pain, to varying degrees, everyday and every night.

I am a realist, it’s not going to get me doing cartwheels nor is it going to get me on a roller coaster, but it may mean that I can stand for longer than I can stand right now, or sit for longer than I can sit right now. I might be able to be seen less often with my walking stick. It may possibly be able to walk that little bit further, or walk that little bit further and not have to hide the pain I am in, because I am not in any pain. I then, could try and address my ever expanding waist and boost by deflating confidence by being able to be that little bit more active than I am at the moment. It might even lead to me not looking at Vauxhall and Lambeth Bridges with longing and melancholy, remembering my lunchtime walk of old. Maybe, I’ll be able to look in the fridge without worrying if I will get up again. Then, there is the prospect of being capable of glancing at my blind spot. Hell, it may even allow me to think about my body just that little bit less than I do at the moment.

The sky is the limit, or put another way, anything is better than nothing and that excited me.

In case you are thinking that lytic lesions cannot be cured by physiotherapy, let me bring you up to speed. December’s MRI scan found that my lesions were improving and it was suggested that the continued level of my pain was part muscular, and thus, I may benefit from physiotherapy. Not just any old physiotherapy, tomorrow, I will be stepping foot into a magic place called the Royal Hospital of Integrated Medicine. The building is a shit hole, but hopefully, beauty will be on the inside.

Tomorrow, the chances are, I will be singing from a different hymn sheet, but the hopeful part of me, today at least, is getting just that little bit excited. It won’t happen over night, but who cares? I love a project.

EJB x