Tag Archives: lesions

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

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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

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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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Patent

Wanted – Somebody Who Is Good With Their Hands

Ever wondered why you never see a person walking with a walking stick and an umbrella? Even seen somebody walking with a walking stick getting absolutely drenched in the rain and thought, that’s sad, it’s unfortunate they do not have an umbrella? Or have you ever seen somebody with or without a stick, struggle to hold their umbrella for a period of time and pointed them out to your companion, as a pathetic weakling who does not have the strength to hold an umbrella upright?

Rain brings a multitude of dilemmas for the crippled. Going outside can be like Sophie’s Choice. City living really can be traumatic. Something needs to be done to protect the needy from excessive moisture.

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The time thus, is a time for action. Action and innovation.

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Have you ever wanted to help the disableds and did not know what you could do? Do you always feel like you could be more charitable? Are you handy with some tools? Do you have an overwhelming need to show off your skills? Can you weld? Can you smell titanium?

If you have said ‘yes’ to one or more of the questions above, then maybe two can become one, to create something rather special. Not a baby you fool. Despite having a wealth of creative imagination, I have little skill, it pains me to say in manufacture, crafts and neatness. I am seeking somebody to execute my creation of the walking stick/umbrella combo. The Walking Stick/Umbrella Combo (working title only). The device appears to be a standard walking stick, but the handle either stores an umbrella or holds a weightless umbrella attachment, allowing the unfortunate to protect themselves from the rain, without having to sacrifice their walking support or changing the position of their hand. It’s ingenious. I know, you don’t have to tell me.

Artist’s impression on graph paper

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So, if you think you can assist and we can make millions, do seek out contact.

If like me, you have no talent in this area, or simply, if you have no desire to take time out of your physically enabled life, then that is fine. There is no issue. No issue at all. You cannot help me. That’s fine. Just fine. I don’t care.

Emma Jane Jones
Designer

P.S. If you are feeling thankful right now that you can go out in the rain and hold an umbrella, and this sorry for those who cannot, but you cannot help my entrepreneurial ambitions, maybe just help out some cancer patients or something. Paul tells me he is going for a jog of some sort, in the east, it’s not quite welding metal, but it’s something. Here’s the link https://www.justgiving.com/PaulTompsett/
If you cannot shower my scheme with money, shower Macmillan via him.

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The Lover’s Tiff

I have made no secret of the fact that I harbour a little torch for my walking stick. My feelings may be stronger than that. We are in a relationship. It’s ideal really, because He does not talk back to me.

Since the start of our relationship, there have been a few instances where He has decided to run off. Perhaps it’s because I am high maintenance, I don’t know, but He has these occasional disappearing bouts which leave me heartbroken and in need of Magic FM’s Ten at Ten. For the rest of the time, we are very happy together. We hold hands and He feels valued. I am sure of it.

This week, we had an episode. We had gone out for dinner and on our return, we decided to pop into Sainsbury’s to buy some orange flavoured ice lollies. I thought everything was fine. We had spent some quality time together; things were good. So, imagine my surprise the following evening when I went to leave my flat for an excursion to the BFI, and I discovered that my stick was not there. He had disappeared. He had gone. It was over.

Two days went by. I retraced my steps and I could not think where He had gone. I thought that the end was here. Our relationship was done and I was going to have to confront the outside world by myself. In that two days, I did confront the world by myself and let me tell you something for nothing. Public transport, without my anchor, is terrifying and dangerous. Without Him in my hand, nobody knows I am sick and nobody was willing to give up their seat. Walking down the street, I felt alone and I knew that I am not at the stage in my illness yet, where I can venture outside my front door completely alone.

Fortunately, by Friday, I remembered. I remembered getting so excited that the orange flavoured ice lollies and if I am honest, the Ribena ice lollies were on offer, that I put them in my basket and left Him learning against a glass door staring at the choc ices. I went on to google, I got the telephone number for the Sainsbury’s in Dalston and I dialled. I then asked the embarrassing question.

Me: Um, hello, I know this sounds strange, but do you have a lost property and if yes, has somebody handed in a walking stick?
Sainsbury’s Customer Service, Dalston: No.
Me: [silent devastation]
SCSD: Actually, we have something, it’s silver. Can you describe what it looks like?
Me: Yes. It is silver…. It’s a standard NHS issue walking stick, with a grey rubber handle, and there is a cap missing on the handle so you can store things in it. I love it. It has a rubber bottom as well.
SCSD: Yes, it is here. Just come to the Customer Service Desk.
Me: Thank you so much [exhale].

He was collected later in the day. I approached the desk unaided and left limping. To the passerby, I must have looked like a benefit cheat. I did not dwell on this, for I know why I need my beloved. And let’s face it, if it were not for me, He would have no purpose in life.

People may wonder how I could mange to leave my stick in a store and not realise. It’s not because I am absent minded. No way. It’s not because I cannot multitask. Not even. It’s not because I lose things all the time. Think again. It’s because I am a fool in love with a big, long stick.

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Every relationship has its ups and downs right?

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How Not To Greet A Myeloma Patient – Part I

I can hold a grudge. It’s my one weakness. I can really hold a grudge. Sometimes, in fact, most of the time, the grudge is built up in my head and becomes far worse than the incident itself. On occasion, years down the line, I may admit that I was wrong, but this would probably just be to myself.

With that in mind, I think I need to get something off my chest. If only the elimination of pain was that easy, for as I type, my chest area is sore. Not as sore as my neck though. Oh no, my poor neck, which as people know is connected to the spine. Or is it part of the spine? To the non medically trained person, I have a sore neck, but based on my previous scans, the pain is coming from the spine. Do not hold a grudge against me for that… Until August of last year, I had no reason to know what a C4 was. I know now.

Since that sunny day in August, there is one thing that I have been particularly sensitive about with regards to my body. Sensitive and all so very paranoid. The paranoia associated with my spine and the potential damage that could occur makes post alcohol anxiety look like a meadow on a sunny day. The knowledge that I am walking around with multiple lytic lesions in my spine (and elsewhere), dictates an awful lot of my actions and thus physical limitations. In the autumn, when we were still establishing my pain management, there was a rule, a simple rule which suited my tactile demeanour, and that rule was ‘do not touch me’. It then became ‘do not hug me’. This one was particularly important after a big strong man hugged me in my office, which led to me having to pop a few diazepams and going home. Overtime, as I have become more mobile, these rules have been forgotten and I am more than happy for people around me to just be gentle.

I do not think it is difficult to remember the importance of being gentle. I believe that when people think of me it should be right up there in their thoughts along with how I am the greatest person to have ever walked the planet. I have made no secret of the fact that it is important to be gentle. I did fracture a vertebrae on the bus and a rib reaching for a bottle of water after all. I am brittle. I take it for granted that the people in my network know that and conduct themselves accordingly. I do not take it for granted with members of the general public and for that, I have my beloved walking stick. My friend Katy has developed a new way to greet me using our pinky fingers. A secret handshake if you will. This is thoughtful and appreciated, and evidently, really, really cool.

What is not appreciated and what is quite clearly not the way to greet somebody with myeloma, is somebody coming up to me and grabbing my neck so tightly and yanking it down, that I cry out in pain. For the first time in a long time, in that instant, if I were not attempting to be a lady and you know, in a great deal of pain, I would have punched the perpetrator in the face. Actually in the face and I am sure that the pain from that would be nothing compared to the pain they caused to me nor the paranoia that decided to spring up in its aftermath.

The lesion in my neck (top of my spine), causes me the most worry and currently the most annoyance. I can give myself a blinding headache if I lean a little bit to the left for goodness sake. So, after my neck was unceremoniously shaken by an ignoramus, I instantly had shooting pains up and down my spine and arms. I then spent two days not being able to move a great deal. Happily this coincided with my steroid crash, so I was in bed anyway, but still, I am holding a grudge. I thought the pain had gone, but as I spent six days in bed, it was difficult to fully assess the damage. Now however, having spent three days not entirely in my bed, I can say that I am still suffering. I am still suffering 10 days after the fact. It is a familiar pain and it is a combination of stiffness and the constant sensation of a trapped nerve in my neck affecting the strength in my arms, specifically, though not solely, my right arm. Brilliant. Thanks.

I mentioned my paranoia, and because of this, I have no idea how much of my pain is perceived or actual. I wish I had not been put in this position where I have to doubt myself. The mental torment is enough for me to warrant saying nasty things behind somebody’s back, without the fact that a simple, thoughtless, drunken act, could cause actual long term damage to my skeleton. Let’s emphasise this. Long term serious damage to my skeleton.

At the moment, regarding my injury, I am going to wait to see whether the pain subsides. As for the act and the perpetrator of it, my grudge is building. I don’t ask for a lot (others may beg to differ), but I do ask that people are considerate to my weak body. I would rather that, then people who have not seen me for a whole deciding that I need a one on one counselling session complete with sympathetic noises.

So, My name is Emma Jane Jones and if you do not want me to think that you are the devil’s mistress, don’t touch me.

More generally, if you know somebody has myeloma, to be on the safe side, do not, absolutely do not, tug on their neck. That advice will take you places. I am sure of it.

EJB x

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