Tag Archives: neuropathy

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

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Rite of Passage

Few people, unless they have been in the position where they have had to take strong drugs, will truly understand how said drugs can disrupt your body. Even when you think you have been there and got the t-shirt factory, it can still take you by surprise. Despite the fact they are designed to make you feel better, in the short term, they make you feel quite the opposite. They make you tired, they make hungry, they make you lose your appetite, they make you sick, they weaken your heart and so on and so forth, until we get to their secondary role as a butt plug.

Currently, I am trying to learn and understand what the fortnightly payoff is for having a poison injected into my stomach. There is always a payoff and a debt for goodness, and I’m adjusting to that once more. I know what the velcade side effects look like when they are accompanied by other hard drugs, but I do not know what it looks like all on its lonesome and this has me ready to pounce on any change in or on my body.

My post transplant world, fraught with its own issues and darkness, is the longest I have gone without hard drugs, since all this started. The beauty of this little factoid, is that it enabled my body and my system, should we say, a chance to regulate, a chance to acclimatise. Just as I have had to get used to living with this, so too has my body. The problem however, as I am discovering as I type, is that everything and anything that is not the norm, wreaks sheer havoc on my insides. I am mainly talking about drugs here, but it also applies to bacteria. I think an episode last week involving some past its sell by date bean curd made Housemate never want to sleep with his door slightly ajar again… On the other end of the scale, when I was forced to take Oramorph, I made the deal with the devil, which allowed me to sleep, but stopped be from doing something rather special, for a whole week.

At the moment, I know that my limbs are more prone to numbness than they should be. I have had my phone resting in my right hand for a good 15 minutes now and the sensation in my right hand particularly, is not a pleasant one. With my two injections to date, I have been kept up once with the desire to chop my left arm off, as I was aware of its presence and only it’s presence. The neuropathy is the easiest thing to measure. It’s the same as it has always been, and velcade has always been its cause.

More difficult to measure is the fatigue. Fatigue is our plague. I am tired pretty much all of the time, so it is difficult to separate the causes. After each injection I ask myself and others whether I am tired because I am just tired, or am I tired because I have just had bleach injected into my stomach? It’s too soon to be able to answer that question. Not that it stops me from hypothesising.

Of one thing I am certain. I had my last injection 9 days ago and since then, I have managed to empty my bowels two and a half times. The same thing happened a fortnight before. Another deal with the devil, eh?

On the above, I can whinge and I can moan, and I do whinge and moan, but I also need to just get on with it. It is a payoff; maintain a remission for little discomfort here and there.

The truth is, I know it could be so much worse, so it just has to be dealt with. It’s part of growing up.

EJB x

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My Left Hand

Last week I sat in my appointment with the Medically Trained People and when I was asked the question “how is the neuropathy?”, I responded with “it’s nothing, nothing like before, in fact, I do not need to discuss it with you, so it is not an issue right now“.

Now, I do not mean to speak ill of the people I love, but I am a fool. A big old plonker. I tempted fate and now fate is holding my left arm hostage.

For those of you wondering what the heck ‘neuropathy’ is and what it means for me, then wonder no more… https://ejbones.wordpress.com/2012/11/19/cillit-bang/ I was preoccupied with this particular side effect for quite a while and somehow, I get the feeling, that I will begin to dwell on it once again. Do you know how I know this? It’s because I have a left arm.

For the last week, I have been constantly aware of the fact that I have a left arm. Intermittently, I am aware that I have extremities on the left hand side of my body, but it is the arm and hand bearing the brunt of the Velcade madness. If one is lucky, they have a complete set of limbs, but I bet during the course of a normal day, you do not think about your limbs. They are just there and they do their job. Velcade makes me know that I have limbs. In everything I do and everywhere I go, I am accompanied by them and a growing sense that I want to rip them off. Obviously, I will not rip them off; My Myeloma is enough to contend with at the moment thank you.

One Medically Trained Person told me that the side effects from the Velcade would be eased by the Thalidomide. This pleased me. However, since then, two Medically Trained People have told me that the Thalidomide enhances the side effects and thus it is super duper important that I report any changes to them. So… Helpful. They all agreed that the symptoms will get progressively worse the more injections I have, so I have concluded that… Hang on, my left arm just wanted to say “hello”… where was I? Yes, I have concluded that I will monitor the side effects like I did on PADIMAC. My dose was reduced after three cycles on PADIMAC, I wonder whether I will be able to make it to the end of my second cycle before that happens now. Worst case scenario is that I have to start a new treatment, if the neuropathy becomes unbearable. We, by we, I mean my arm and me, do not want that to happen.

I know my side effects are not that bad when compared to what other people experience. I can still do up my buttons and I do not have constant tingling in my fingers and toes. What I have is, dead arm. If it is not dead, my arm is morbidly obese weighing in at 100lbs and it is a chore carting that imaginary weight around with me everyday. My arm is also fond of the dull ache, correct, constant dull ache. I have a left arm. When I am sitting still or lying down all I am aware of is my arm. Arm, arm, arm, I have an arm, it is on the left hand side of my body, arm, arm, arm. Whilst I may not have constant pins and needles, it is very easy for me to get them. If I hold my phone the wrong way in bed, then that’s it. Needles and pins, pins and needles. I have an arm and it wants to wake me up.

Time will tell… I have managed it before and I will manage it again. In the meantime, my arm and me wish you well.

EJB x

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Cillit Bang

WARNING! The following contains an image of a stretch marked stomach, close your eyes if squeamish and/or eating. I brazenly display my battle scars from a lifetime of overeating in the clinic, so why should the Internet be any different? Vanity does mean I need to emphasise that the stretch marks are plentiful because of my figure pre-weightloss. Really.

Velcade then, is a medicine. It is my trial drug and, it would be fair to say that our union is bittersweet. Our relationship may be over, I don’t know. I will find out in a week whether Mr Velcade and I are going to carry on together, on this rocky road to recovery.

I have not responded as well to the Velcade and other drugs mix as I would have liked. The decision as to whether I continue with the current course will be based on my results on Friday. I am indifferent. New drug or old drug, I just want to get better.

In medical terms, the Velcade is similar to Cillit Bang. It’s a really expensive bleach that somehow gets rid of the myeloma and its stupid paraprotein by science. Clearly, I have a medical degree. The cost of the teeny tiny injection is £1.5k-£2k per shot (two separate sources although one was Internet based); I have had 16. Pocket money.

I suspect that it must be successful usually, because the side effects are the pits. Every time I visit the clinic, I am asked whether I am experiencing any of the following:

• numbness or pins and needles
• dizziness
• fatigue
• diarrhoea/constipation
• sickness/nausea
• irritable skin

I have experienced all of the above bar the diarrhoea and actual vomiting. There is the silver lining.

The neuropathy is the main thing and hopefully, because of the endless stream of questions and monitoring, my long lasting side effects will not be too severe. I now have the pleasure of waking up everyday with cramp in my leg. I get the occasional pin or needle, and sitting still for a long period is a treat when my left limbs go numb. If I was a fidgeter before, you should see me now. If I hold my phone for too long, my arm goes dead. That is the way treatment goes and I hope everyday that this is not permanent. I cannot complain too much because I have heard stories of people with more severe neuropathy than mine, so, consequentially, I hope everyday that mine does not get worse. I want to be able to continue to do up my buttons.

As for the rest?

Dizziness happens and I have to remember to stay hydrated. I have to have my blood pressure taken seated and standing, two times a cycle. It’s something about the oxygen.

Regulars will know where I stand on fatigue and constipation. They’re the bomb.

Skin irritation sounds relatively minor and it is, but boy is it a nuisance especially when it is on your waistband. I have the Velcade injected in my stomach after I once had it injected in my arm and I saw the mark it left. I really am vain. Every injection (for me anyway) leaves a red blotch, which then turns brown before it drys out turning grey. Fourteen of my injections have been in my stomach because of the unsightly markings and it made sense because my stomach is unsightly anyway as the picture below demonstrates. If you look really carefully, you will see Velcade marks at various stages. You could date them like a fossil.

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It is quite clear from the photograph that my mirror needs a good clean. I have never mastered the art of cleaning glass.

So there you have it. Is my relationship doomed? We’ll know in a week.

EJB x

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