Tag Archives: lesion

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.

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.

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. 💩

And now all I have to do is wait… Trust me, I will no doubt have a thing or two to say about having treatment in the big tower, where nobody knows my name, but if it means I can walk just that little bit more, then hell, let’s change up the routine. Just this once.


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The Pain Game

I do not think I have any right to complain about my pain. I have the right to complain about My Myeloma. Not the pain. Not right now.

The truth is, and this has been the case since last October, that the Medically Trained People have given me additional medication to alleviate some of the pain. That medication is called Oramorph. I would have mentioned it before, such is my distaste for the stuff. See for yourself https://ejbones.wordpress.com/2013/01/13/oramorph/.

The difference between now and then, is that I have taken Oramorph since. I took a lot if it in fact, during my 12 night stay with T13’s Angels. My reunion showed me, by slapping me in the face, why I should not take the stuff unless I absolutely, positively, cannot open my eyes due to pain, have to. Despite the pain I am experiencing now, it is not the time to take it. I do not need another cause of fatigue and delirium, and that is what it would give me.

At the moment, the benefits of the ‘morph are far outweighed by the disadvantages. I absolutely would like some temporary pain relief. I really wanted it a week or so ago when I had lady cramps rivalling childbirth. Morphine for period pain just did not sound right. In the end, as I am not allowed to take ibuprofen anymore, I settled for codeine (after checking with a Medically Trained Person). My life would be easier if I did not experience pain, but Oramorph does not just reduce pains, that’s right, plural. Oramorph makes me slur, it makes me sleepy, it makes me groggy, it makes everything appear fuzzy, and as I experienced in hospital, it can make me hallucinate.

Recreationally, some people, not me for I missed that boat and my addiction to beer is enough, would enjoy some of those symptoms, but when one is already feeling shite, it just gives you further reason to feel shite. The icing on the cake now, is that I need to take a fairly hefty dose for it to have an effect on the target area. After all, I have taken a form of morphine everyday for a year and two days; I have tolerance. Most the time, if I do not skip a dose or am I voluntarily trying to reduce it, I take 60mg of it a day. I was told by the Medically Trained People that this resulted in me needing more of the liquid stuff when I was in dire straits. Essentially, I am a druggie. I suspect, without any medical proof or advice, that this is why I experienced the other side effects so keenly.

Do not get me wrong. I like the feeling of loosening up, maybe even losing a bit of control with the help of substances. By substances, I mean alcohol because I am a square. Maybe not a square if you have seen me when I am drunk. The feeling morphine gives me, is far beyond a loosening up. It’s like I have tinnitus of a floating body.

If you had not guessed or did not know, morphine is a controlled substance. If for any reason I was to visit a prison, I would not be allowed it in my handbag. That fact it is controlled makes you know it is strong. I intend to make a punch from it when I am done for my guests at a mature and grown up party. Not really Pharmacy. I am very sensible with my drugs and follow all the rules. I concerned myself early on that morphine was controlled for a reason and in it’s breakthrough forms, was addictive. This just have me further reason to stop last Autumn. Four addictions was enough already (cigarettes, beer, fizzy water and EMan). I do not need anymore.

Most importantly, and this is what is overrules the pain, I want to be able to think and speak like I have thought. Oramorph does not afford me that pleasure. I had two days in my cell, where I had spent hours feeling and looking like I was about to give birth to an energetic octopus, so gave in and asked for the ‘morph, which resulted in some pretty funky dreams. They were not dreams, for I was awake. I know O was awake because on one occasion, my vision carried on whilst I got up and pooped the green.

My special trip felt like it went on for hours. I have no clue of it’s actual duration, but it clearly derived from the pain I was in. I imagined there was an entire planet inside my stomach, which existed within a red theatre with stalls, circle, a dress circle and an upper dress circle. The planet was made up of ants who were appeared human, who walked by playing the drums. It went on and on and on. The more it went on, the more uneasy I became. I do not recommend it. The following day, I knew, that Oramorph and me, should only go together in a controlled environment.

Aw, the choices we have to make. I choose me.


P.S. I maintain that I can withstand a considerable amount of pain, especially with the MST. Myeloma did that for me. I guess, pain in itself, does not scare anymore, not after the fractures and all the pokings. That said, the all consuming pain experienced during my menstral cycle, which was post transplant and post artificial mess me arounds, was surprisingly. Women and men, I can honestly say, that the pain of that period was on par with my first rib fracture. I may even have preferred the rib fracture. True story.

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