Tag Archives: spine

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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Reliance

I have spent a good five months telling myself and anybody else who would listen, that I could walk without my beloved walking stick and that He was only needed in my palm to tell the general public that I had issues, so I did not have to. I am a strong, independent woman, who absolutely positively can walk substantial distances without a walking stick.

Sadly, this is not the case. It surprised me. I might be able to walk unaided, and frequently walk short distances without it, but as I discovered on Tuesday, there is a price I pay for doing so. I rarely go anywhere without my walking stick. It is true. I may walk around my flat without Him, but if I am leaving my front door, he is in my palm, and we are together. On Tuesday, I did leave my flat without my walking stick, I did so because I could not take Him and my luggage and I calculated, that as I had no intention of going on public transport during my holiday, I would not need Him. On Tuesday, as well as leaving my life to have a stem cell transplant, I also walked a great deal, around the hospital’s unofficial campus, unaided. Until approximately 18:45hrs, I thought absolutely nothing of it. Why would I? I never normally think about it, and on Tuesday, my brain was preoccupied with my transplant, to spend time thinking about my back pain.

That is the problem with my disease, my focus this week should have been solely on fighting this wretched thing, and not having to worry and let’s face it, experience severe pain, from my lower back. Pain is a byproduct; it is not the cancer. Even this week, I have to balance the two and remain cautious of the pain. When the illness sets in, everybody will be looking at the side effects, but I know what my neck and back will feel like after days of lying in bed. It will not be pleasant.

Anyway, by the time I realised why I had spent Tuesday night feeling like a horse had kicked me in my lower back, it was Wednesday… Not knowing how long I will be expected to walk around before I am sentenced to solitary, meant I had to get a replacement, which was much easier than anticipated thanks to my favourite receptionist. It is a ‘temporary’ replacement. I do feel like I am cheating. I am cheating on my beloved walking stick, with a younger, cleaner model. The new one still has his stickers in place and there is more of a spring in his step. And yet, I am yearning for my love.

Now then, if this wasn’t enough evidence for me to get a Freedom Pass, then I do not know what is.

My name is Emma Janes Jones and in addition to having myeloma, I, unfortunately, am disabled.

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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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