Tag Archives: thalidomide

VDT/VTD Complete

Last night, shortly after 23:00hrs, I made my way to my Drug’s Drawer, which it’s quite a distance from my bed, removed the packet of thalidomide and felt relieved, that for the foreseeable future, I was taking my last dose of thalidomide. Once I swallowed the two plastic coated tablets, that was it, VTD/VDT was over. I was done.

Considering that I did not know I was going to be on VTD/VDT, nor did I want to, I can say that the last four months, 112 days, has gone reasonably quickly. In that time, I failed to establish the correct name of the treatment, but I do know that I took 224 tablets of thalidomide, 480 Dexamethasone tablets, have 16 more Velcade injections and thus have 112 nightly injections of Fragmin, equating to four full sharps boxes, which needed to be disposed of. All of it was done without a break. My last Velcade injection was last Friday, prior to the long walk to my drugs drawer, I gave myself my last injection of Fragmin, and my last dose of Dexamethasone, thankfully was a good few Mondays ago. The times, they are a changing.

Clearly, it is probably not the last time I will ever take these drugs. At the start of January, I said I had had my last ever Velcade; this was, quite quickly, not the case. I have learnt by now, in this merry game of myeloma treatment, to never say never. I may have given myself my last injection of Fragmin, but if my transplant does go ahead, I imagine that I will be given something similar to Fragmin because I am not going to be moving much, and as the person trained in ladies’ bits and pieces said, my weight makes me more vulnerable. Unfortunately, steroids form a back bone to myeloma treatment according to the Medically Trained Person I asked on Wednesday, so at some point, they will also return to my life. In spite of that reality check, that in all likelihood, last night was not the last time I would take any of the drugs, I still allowed myself a wry smile and an inner flutter of excitement that I had completed this round of treatment. The sight of that empty thalidomide box, my oh my, did it give me goosebumps.

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It is done. One more chapter down.

The journey I am on… Bloody hell.

Mamma Jones said that I should celebrate last night, but unfortunately, after a relatively busy two days prior, I was incapable of celebrating yesterday. I did not leave the flat all day. To be perfectly honest, I do not recall walking past my bedroom towards the front door. I essentially existed within three rooms. This fact, did put a dampener on any celebrations because my nemesis, Mr Frustration reared his ugly head. Though, that does bring me on to the second reason I am pleased this treatment is over. That side effect, fatigue. The fact I have taken my last dose of thalidomide, means that at some point in my near future, the level of fatigue I have been experiencing will fade. It will not be today, but they will and with just 11 days before I go in to hospital (possibly), that is most welcome. It is beyond welcome in fact. I do not want spend any of the days I have left, this side of my transplant, not leaving my flat. No way, Jose.

So, with great pleasure and relief, I can say, VDT/VTD, complete.

EJB x

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The Moody Cow (Proper)

I have not enjoyed this last week. In fact on the scale of all things enjoyable, the majority of my week has been in the minus. If I had any doubt that my fatigue was going to get worse, there is no doubt now. Fatigue has become my ruler, and it has led to me not doing what I wish, instead, I have had to cancel my plans and thus waste time, imitating a lazy fat slob, who does nothing with her day but lie on her bum getting value for money from her monthly Netflix fee. To say that this makes me sad, would be an understatement. Today, for example, when I realised that I would not be able to go out for lunch, I produced a big wet patch on the lefthand side of my bed with my tears. My week has been full of similar disappointments. I have been cancelling plans left, right and centre, because I know that my body is just not going to get me to where I want to go.

Contrary to population opinion, I do not put on a brave face for every minute of every day. People may think that, for that is what I allow them to see, but all of the things that made My Myeloma shit ten months ago, still exist and occasionally I give in to them. Occasionally, I become a victim of self pity. I allow myself to wallow in my situation and that is what has happened to me this week. All my rational thought has been buried deep under my bed, so the only thing I have been left with is dirty, rotten, stinking thoughts, which turn me, Miss Sunshine-And-Flowers into what is commonly known as a Moody Cow. For the last five days, I believe it would be a fair assessment to say I have been the moodiest of Moody Cows. It is not pleasant.

I am frustrated. All so very frustrated.

I am no stranger to fatigue; it has been my friend this last 317 at least. What makes my current levels feel so different is time. Lack there of. There is a ticking clock constantly in my head, and my deadline is looming. If I stand back, and peer into my life with my friend Common Sense, I would realise that it does not matter what I do with the next three weeks, for there will be time to be the life and soul of my party post transplant. The trouble is, I cannot do that. I have always managed my fatigue by giving in to it one day, because I know I can make up for it the next, or in the following week. The problem I have now, is that for the foreseeable future, I do not have a next week. Not having a next week, makes the days I spend in/on bed, and I have spent much of my last week in a horizontal position, seem like an eternity. Not only is it an eternity, it feels like a wasted eternity. There are so many other things I would prefer to be doing and need to do, but alas, my body is saying ‘no’.

In planet eternity, by default, I fall into a form of isolation. Without energy, I tend to isolate myself because I do not have the energy for conversation nor, leave the compound that is my flat. In my irrational world, this breeds thoughts of loneliness. When I feel lonely, more breeding takes place and out pops anger, paranoia and jealously. I am lonely because my exhaustion dictates that I do not have the energy to see people. All the while though, I have a feeling in the pit of my stomach telling me that I should be seeing people, that I should be doing something productive and thus, all I feel is guilt. Guilty that I am not achieving what I can achieve and guilty because I feel like I am letting people down. It’s a vicious circle, because then, I get angry. I am angry because I cannot do what I had planned and I am jealous because others can do what they had planned. Furthermore, because people can do these things, my loneliness translates this as their apathy towards me.

It’s a difficult situation and there is no winning solution. On the one hand, I am too tired to speak and plan, but on the other hand, I want my phone to be constantly buzzing so I know that even if I am stuck in this prison, I continue to receive my correspondence. This week, I have let myself feel like I am in solitary. I am in a Segregation Unit of my own making. I let the thoughts creep in of people not understanding, not caring, not grasping my currently levels of anxiety and fatigue and I hit back with the full force of my passive aggression. I hate it, but whilst I feel like I am being held hostage by my medication in this three week egg timer, I am going to act out (or in).

I know I am being ridiculous. I do not need people to tell me that. Rarely, when I have these thoughts do they stick around long enough for me to have to vocalise them. I throw them away. The egg timer is filling up fast and because of that, the negativity is sticking around. Being mature and stuff, instead of handling my negatively in a constructive manner, I act like a child. This embarrasses me. A twin did not need to receive my stream of consciousness earlier in the week, however she did. It clearly demonstrates that I am currently a Moody Cow. It is not big and it is not clever, but it is the reality of My Myeloma. It shames me, but like I said, at times, these outbursts happen. So, without further ceremony, I give you exhibits a and b:

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Needy

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Pathetic

I know this will get better, it always does, but it is just tough. Tougher than over cooked beef. I cannot emphasise that enough. My paranoia tells me that people do not really understand it. A friend asked me this week if I used my tiredness as an excuse to not see people, not to answer my phone, and my response to that was simple. I wish it was an excuse. It is the reason why; an excuse implies that I have some control over it. I do not. My current level of fatigue is such that my bed is my default position and anything outside of it, exhausts me thinking about it, let alone doing it. I would not choose to sit on my bum for this level of time. I would not choose to have a day of activity bookended by a day and a half of rest.

This is my life, and the sooner I accept that willpower is not going to win out before my transplant, the better.

Just five more days of thalidomide. Five more days.

EJB x

P.S. For those of you who get my blog emailed to you, I apologise for the earlier publication. If you have not guessed, that was an error, and I ask you kindly, to delete it.

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Side Effects

I’m alive. I’m alive. I’m alive.

Hello there. I would like to say that the reason I have not written a blog for so long is because I am so well that there is simply no need for me to off load my thoughts into the ether to prevent me from having a psychological breakdown, but alas, that would be a lie. And I am all about the truth. The truth is simple. I have been too tired. Tiredness sounds like a weak excuse, but it is not. I have been experiencing a tiredness that is so overpowering, I can spend a good two hours staring into space before I have realised that this is not a good use of my time and then when I do realise, there is not a damn thing I can do about it.

To be absolutely clear, this tiredness is quite different to a steroid crash. I do not feel ill when I am tired, which is a bonus. Unfortunately, whilst I do not feel sick, the tiredness just creeps in and completely takes over every other part of my being, so that the only thing I am capable of doing is lying down by myself with nothing but blankness from my brain for company. My TV may be on, but I am not watching it. I may even be able to produce some words to Housemate, like, “night”, but essentially, I feel like my brain has shut down. Blankness is the best way to describe it. If you could see me, and I could gesture to show what it is like, I would produce a confused look on my face, with my mouth open and make a constant dull moan. Let us add a metaphorical ringing in my ears, for luck. I see it as a form of stupor. At times, I worry that I am catatonic. The tiredness by the way, to ensure that we are all on the same page, is not about sleeping or my need for more sleep. I find that sleep and tiredness do not necessarily go together like a horse and carriage. Is this enough? Is the incapability explained?

As my last treatment cycle drew to a close, which by the way, was last week, it became increasingly clear to me that the tiredness was getting worse and thus my ability to do normal things was reducing. I found myself longing for my steroid crash (a ridiculous notion), because it would allow me to spend time in bed. I do not think others would judge me for spending more time in bed, but I would judge myself. I have said previously and it is my desire, that I want to live as normal a life as possible. During my cycles, after the crash, I try to do this, I try to be normal. I make plans, I go to work, I see people or at least I try to see people and at the start of VDT/VTD this was fine. I could achieve everything I wanted to achieve. Now? I cannot achieve or do everything I want to achieve with my time. By the time I get into my bed, which is key blog writing time, everything has been spent. I am done and the ringing commences. My body is in the middle of a war with my brain and the body is winning. I am essentially stuck in a stinking, dirty trench.

I believe an example would help hammer home my point. Two weeks ago, I had a day where I had three things planned. Treatment, a trip to Tunbidge Wells and then a show in the evening; I was very much looking forward to the latter. By the time I had completed the first two, my body was so exhausted and I felt so incapable of doing anything, I cried. I cried on my bed like a big old baby because I could not see how it would be humanly possible for me to get my body out of my flat, on a bus to the Southbank and back. The thought of it made me panic. Panic because I did not know whether I could last another four hours, and if I couldn’t, predicting when my body was going to breakdown. Was it going to breakdown at the theatre, were my friends going to see? Were they going to realise that there are times when I cannot make conversation because my brain shuts down or are they just going to think I am a rude self indulgent bitch incapable of holding a conversation? Which option is better? Breaking down at the theatre was my preferred option to doing in on the bus, because at least then, I could hop in a taxi home. But what if it happened on the bus? That 30 minute journey would be excruciating and then, would I even have the energy to walk home when I reached my stop? Then I panicked because I did not want to fail. I wanted to go out and defeat was not an option, well, it was, but I believe if I had allowed my brain to lose, I would have spiralled into a pit of depression. In the end, I went, I ate some food and that gave me some energy for four hours, but it was a struggle. I subsequently spent much of the next day in bed. Well, until the evening when I went on a hen do.

That was the day I realised that the tiredness was not run of the mill and I was officially drowning in it.

The wicked truth is that I have been taking thalidomide every day for the last 91 days without a break, and it is taking it’s toll of my body. The Medically Trained People told me to expect my side effects to worsen as I got deeper into my treatment, and my, were they correct. The main side effect for me, is not the neuropathy, it’s the fatigue. I have three weeks left of this treatment and I know that I am not going to be capable of having multiple plans in a day. At the moment, if I do have multiple plans, I worry about when I can squeeze in rest and if I cannot, whether I am going to be able to do it. Everything in Myelomaville is a balancing act, and unfortunately for me, I am just going to have to give more weight to my bed. Perhaps I need to conduct my life solely from my flat again, because I am finding that even a solitary plan can be exhausting. Knowing that I have to walk from a to b, or get somewhere, or speak to people, makes me tired before I have even done anything. Again, sadly, I find, this means that I see less people because I cannot make the effort to be sociable. It can be lonely. It is also frustrating.

I had planned to write this blog eight days ago, but My Myeloma had other plans. To be more specific, my side effects had other plans. I am just coming out from my monthly steroid crash, which last week proved to be the worst yet. I can say, hands down, that I have felt the worst I have felt since the autumn. Maybe since I was in hospital. The side effects will get worse as you go through your treatment. It’s been a delight. I do not want to dwell on it, but in short, I had to stay at Mamma Jones’ house because I was incapable of looking after myself. I even tried to postpone my treatment, but I had no luck there. As many people know, I am glass half full, so I just saw it as training for my transplant. I definitely did not cry a lot.

Here is an aside for you. I realised that a sign that things were improving was when I put a bra on. The support meant that I was planning to not spend the entire day horizontally. Also, wearing something that did not have an elastic acted waist. Needless to say, at its worst, I looked H.O.T. Hot.

So, there it is. The reason I have not been blogging or maintaining as much contact as I would like. Tiredness. It really is not fair. It sucks all the funny out of my mind and I am not used to that. I need to laugh.

As with everything, I am just going to plough on through and hope that I can get to the end of this cycle in one piece, without plunging into a cesspit of depression. In order to ensure that the latter does not happen, I will keep blogging. Self preservation and all that. Plus, some really exciting shit is about to happen.

EJB x

P.S. I thank you for your concern. It warmed my womb.

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Stress Management

In the last few weeks, I have not thought that much about the fact that I have cancer. When I initially thought of that statement, I was going to say ‘recently’, until I recalled that my last crash was only three weeks ago and I know that back then, all those hours ago, I thought about it a lot. That’s the thing about My Myeloma; I’m only as good as my current good weeks. The bad gets forgotten, and it will stay that way until I start chugging down those ‘roids again on Friday, actually, when I come off them on Tuesday.* So, to rephrase; today, I have not thought that much about the fact that I have cancer. It may even extend to last week too, if we can exclude a few live episodes of the roadshow here and there (I even did one on the phone). Ah, the beauty of telecommunications.

Fatigue *may* have been stalking me a bit this week (just ask my pillows), but apart from that, and whilst we are on the subject, some bone pain, I feel a-okay.

Today, for reasons I am not going to share because I am sure you would find it mind numbingly boring and EJ Bones is about cancer. It’d be called EJ Jones otherwise, and then I really would get into trouble telling people about all the aspects of my life and The Network. I’ve watched Julia and Julia. I know about the pitfalls of blogging. Anyway, I am digressing… Today, I worried about something that wasn’t cancer. It actually preoccupied my thoughts. I know that that has happened previously in the last eight months, but I cannot remember when exactly (like I said, only as good as my current good week). Having to engage my brain in something wholly, not wholly, but you know, a lot, with something that for today and perhaps tomorrow and even the next day depending on how tomorrow goes, that is not my illness, banishing It to the sidelines, no matter how stupid I may look, or how flustered I get working things out during this break, is kind of nice.

I nearly text somebody earlier, I have the draft, it went something like this:

Today would have been a bad day if I did not know what Myeloma was and I didn’t have it. As it happens, apart from some testy moments which made me sweat (for once not a flush), and tiredness, I think I enjoyed myself. Is it strange to think that? See you tomorrow. You’ll know it’s me, I’ll have bags under my eyes.

I am always being told that I need to take things easy and I do. My focus, my main focus is to get better (whatever He looks like). Today, for example, whilst my mind has been otherwise engaged, I still had to make concessions. I got into bed at 21:00hrs, shortly after taking my nighttime drugs, so that I can get up in the morning. That said, I have to get the balance right between getting myself better and living. The two are not mutual exclusive. I feel better when I am doing the latter. I’ve been going through this for long enough to nearly always know when to call something quits. So, people, do not panic. I suppose, one could argue that it is wrong for one thing to occupy my thoughts at anytime, but, I’m learning slowly and every normal person gets a good four hours on me a day, so they can fill their minds with more things. And, really, don’t rain on my parade.

I know I am not in a long term, sustainable position, but it is the best I can do for now. Damn. It is not sustainable is it? Not beyond my treatment anyway… Well, I do need to see people and tidy my wardrobe and read a book and bake a cake and go to the cinema and some other stuff. So yes, it is not fair nor sustainable. But it is my now.

I suppose what I am trying to say is that today, I feel like I actually lived with cancer. Good and bad. Omnipresent as always, but not everything.

It didn’t make me sad today. Not once.

EJB x

* Note to self and steroids, must not be ill next Wednesday night. I have a date with some Mormons. Actually, do Mormons feature in The Book of Mormon? Is it appropriate to keep saying Mormons? Political correction. Note to self, must not be ill next Wednesday night. I have a date with some contemporary musical theatre.

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Waking Up

I have never been a morning person. I have always enjoyed a lie in and I have always loathed an early start. I did the latter because I had to, I’m an adult after all, but rarely did I take pleasure in it.

Since my diagnosis, I have continued to set my alarm clock every week day; whether I get up when it goes off is another matter entirely. Keeping that normality however, pressing the snooze button multiple times, is important to me and I have no intention of turning it off. My drugs and My Myeloma in general make me tired, so that snooze button gets used a lot now. Six times this morning. Fortunately for me, I also have a human, who acts as an alarm clock before he goes to work, and that usually gets me moving. If not moving and dressed, at least temporarily out of bed for a pee and a cup of tea.

The struggle to wake up these days, under the influence of thalidomide is proving to be much more difficult. As I have always been something of a sloth, it means that I am now late for every day time activity, including my treatment every Friday at 11. The excuses I give for this varies, but I am yet to use, ‘I just couldn’t get up’. I suppose I could change the time of my appointment, but if it was later, I know that I would be in exactly the same position as when it is at 11. At least it forces me to get up. I always have grand plans about the time I am going to get up and become a human, but at 07:30hrs, that usually goes out the window. By 09:00hrs, I just hope that the next day will be better.

I am a zombie in the morning, correction, every morning. I usually feel like I have downed a good few pints of Kronenberg the previous night and that sensation will stay with me until at least midday when I will eventually be able to converse without going cross eyed. Even on the days and nights when insomnia is visiting, I am awake, but my body is incapable of getting up. I get through the mornings at a snails pace and it is frustrating. If I do happen to have plans before 14:00hrs on a day, I try to take my drugs before 22:00hrs the night before, because this will make a difference on my performance when I wake. It doesn’t however completely remove the hangover. If only it did. Fortunately, I have dealt with many a hangover in my time.

Gone are the days where I can skip breakfast. Added to my current levels of tardiness, is the fact that I have to take drugs and eat before I do anything. There is a timetable within that however, so I am not talking about a five minute slot every morning where I shove things down my gob. It is slow, leisurely affair. My bowel issues will almost always delay me in the morning. I imagine not many people have to schedule in poo time. The sad thing is, one cannot predict how long this activity will actually take.

I really do hate being late for everything. I have felt it more over the last few days, but I think that is because my alarm clock has taken himself on a holiday, so I have to take on a little bit more responsibility for my actions. Or lack there of.

One day I’ll be able to wake up at 06:30hrs again and then be ready in 45 minutes, but unfortunately, I suspect that for this chapter of my life, I cannot exist before 11:00hrs.

To be clear, all of this is not because I am lazy, it’s because I have cancer. Nobody can argue with that.

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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Learning To Cycle

I have now been on VDT or in fact VTD, I just don’t know which, for just over a week. In other words, I have been on my new treatment cycle for just over a week.

There is so much to learn.

New drugs means new side effects, which means new good days and new bad days. Maybe it means more good days or more bad days. We just don’t know that yet. All I know thus far is that I am on some drugs, and they come with new side effects. I will put my hands up in the air and admit I am impatient to discover all the side effects, at this very moment, so I can plan my life and rule out the days that whilst I am on VDT/VTD, no longer exist.

I am aware that whatever I have experienced thus far is likely to be the tip of an iceberg. A bringing down of the Titanic sought of iceberg, but the tip of an iceberg all the same. PADIMAC started off easy and then progressively became more and more difficult until I was crying into my pillow on Christmas Day. I hope that does not happen with VDT/VTD, but I would be a fool to think that this was not a possibility. Drugs designed to make you feel better, do in fact make you feel worse. That is the law.

Back to the Now, however, for the future I will deal with, if in fact I have to deal with it. My current side effects are not that bad. Sure, they are omnipresent, and unpleasant, but I am still functioning, so, score!

On a daily basis I have an unknown quantity of shit hanging out in my bowel, but that warranted it’s own blog. By the way, we have got this sorted to every other day. Hopefully. At night time, I experience an interrupted sleep, during which I drink at least one litre of water, which means regular visits to the toilet throughout the night. This is not my favourite thing about life in the dark, oh no. The best thing about the night is the hot flushes. Or at least I think they are hot flushes. Are hot flushes normally accompanied by the sweaty crevice? Well if the answer is yes, I am getting multiple hot flushes every night and I am waking up wet. Well, moist. It depends on the crevice.

I am trying to get myself into a routine, so the thalidomide is taken anywhere within a three to four hour window. Within an hour of taking it, I am usually asleep, if only for a few hours. The time I take it, seems to have no bearing on the hangover I experience in the morning. I describe this feeling as ‘groggy’. I have never been a morning person; I am definitely not one now. I slur until about 13:00hrs, but the key thing my friends, is that I function.

What else is there?

Ah yes, Tin Mouth has returned. It turns out that the taste of metal I blamed on the chemotherapy during PADIMAC is actually caused by the steroids. So, for three days a week, my mouth tastes like a vampire’s wet dream.

I also think the steroids are to blame for ‘extreme’ fatigue, I experienced last Monday and yesterday. There is something so familiar about this feeling. The headache, the bruise like pain in my neck and shoulders, and the total removal of energy from my being. Cosy.

I haven’t mentioned the Velcade… My love of the Cilet Bang is well documented. For the time being at least, it is behaving. I have occasional pins and needles and a tasteful red mark on my stomach. I definitely did not scream ‘fuck off pins and needles’ at my right foot last Friday night, and I am not imagining pains whenever my limbs are resting in my bed. It is fine. Everything is fine.

And that is my new cycle. It could be better, it could be worse. It just, is I guess and the sooner I can get into a predictable routine the better. If only so I can exist around its limitations.

VDT/VTD will not be the boss of me.

Only 15 more weeks to go.

EJB x

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A Month’s Supply

I am used to shoving drugs down my gob. Prior to my diagnosis, I was rather terrible at it, which the multi-vitamin tablets with a sell by date of March 2010, I found in my drawer would testify. I am now pretty good at remembering. I may have forgotten one or two doses after PADIMAC ended, but on reviewing the bag of drugs I was given yesterday for VTD, forgetting is not going to be possible. There are a lot of drugs and I fear I am going to have to be stringent with the timetable. I hate a timetable. It is day two and I am already behind schedule with the steroids. I would have liked to have taken them three hours ago. I’ll pay for that tonight.

My name is Emma Jane Jones and I am a drugs fiend. Apparently.

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The above is my month’s supply of drugs. Well, 28 days to be precise. The pile contains all my VTD meds bar the Velcade, which I get to go to the clinic for once a week. The bag itself contains 502 pills and 20 pre-made injections. I also have a further drug left over from PADIMAC, which I also have to take three times a week.

I just did a quick calculation in my head and I do not have enough syringes for 28 days. I will need to sort that. For this incredibly interesting exercise, that though is by the by. Honestly, this blog is so interesting, I am setting you up for a day of fun.

Now you have been warned, I am imagining that my daily drug routine is going to look something like this. Brace yourself.

I wake up, stretch, look at my phone and take one Lansoprazole to protect my stomach with a bit of water. Wait for 30 minutes to an hour before I take two 10mg and a 5mg tablets of MST (morphine), one Aciclovir, which I believe helps to fight of infection and a Allopurinal tablet, which even after a Google search, I do not have the slightest clue what it is for. I know I was told what it’s use was in September. I have since forgotten because the drugs made me, and I have thrown away the piece of paper telling me its purpose in my life.

On Velcade Days and the day after, I also need to take 10 2mg Dexamethasone tablets (steroids, sorry FUCKING STEROIDS!!!). I like to take these as early as possible, so they do not keep me awake. History tells me that they may well still keep me awake.

At some point in the afternoon, I treat myself to another Aciclovir tablet. Three times a week, on a Monday, Wednesday and Friday, this will be accompanied by a large glass of water and a Co-Trimoxazole tablet to prevent chest infections.

Around 19:00hrs, I will gently caress the skin around my stomach with an anti-septic wipe before I stab the area with a blood thinner known as Fragmin. This is required because the Thalidomide can cause blood clotting as well as birth defects in babies. You have been warned.

At Bedtime Garden, I then get to finish my day with another Aciclovir, one 30mg and one 5mg tablet of MST and two Thalidomide tablets. Apparently, it is best to take the latter at nighttime because it makes you sleepy. I can confirm that I had no issues with sleep last night, but it was only day one. I will assess over the next week when it is best for me to take this drug. Interesting huh?

So, the survey says that on a good day I am prescribed 12 tablets and an injection. On a Monday and Wednesday this increases by one to 13. On a Friday, which is currently my Velcade Day, I take 23 and the injection. On a Saturday, I take 22 pills.

It’s nothing really is it?

Well, I also have in my Drug Drawer some Domperidome, an anti sickness pill, that I can take as and when required and the good old faithful Paracetamol.

Remember, you British Tax Payers are paying for all of this and for that I thank you.

Must dash, my stomach is now lined with a fibrous milkshake, so I must take the ‘roids’.

Boom.

EJB x

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Pregnancy Prevention Programme

Thalidomide comes with strict controls, especially for the ladies of childbearing years. I am one of those, especially now the fake menopause is ending. If you do not know why thalidomide requires a signatory, Google it. I do not need to Google it because yesterday I was given a very helpful pamphlet entitled ‘Pregnancy Prevention Programme’. If you do not know what that is about, then I will think you a simpleton.

Relax. I’m going to tell you anyway.

So, my new treatment, like the old one comes with regular pregnancy testing. Now, I understand why this is a requirement, but I am still traumatised by the sex chat I had with a senior Medical Trained Person on 22 August 2012 by my hospital bed. I remember the rules and I vaguely remember where my stash of nearing the sell by date condoms live. Did you know that a condom is barrier protection? Well, it is. Tell your kids.

I am used to the humiliation of being exposed to regular pregnancy tests, even though my treatment and My Myeloma means that I may never have children of my own. I assume though, that one must be subjected to such controls because there are stupid people in this world. One such control, which I had to sign yesterday was with regards to the birth control I was going to use whilst undergoing my treatment. It was great, because I was sitting a room with the nice, new, Medically Trained Person and Mamma Jones and when the question came, ‘what birth control method are you going to use?’ I had a quick conversation with myself, wondering how I was going to answer this question. The first point started, ‘well, there is this boy…’, but I shut that one down pretty quickly to ‘have you heard of unrequited love?. Again, I stopped it because nobody needs to be subjected to that. I then moved on to ‘well, I have cancer, my hair is non existent on my head and you just prescribed me a healthy dose of facial hair inducing steroids and I am in bed by 22:00hrs every night, so nobody is going to want to tap this anytime soon’. Again, I did not vocalise that one. Then, I thought ‘shit, my Mum is with me’., but I think she likes to be apart of these discussions, so I am sure it was fun for her. Fun for me on the other hand… We are very close now, my six year old niece made it so. To put an end to my puzzled look, at the Medically Trained Person’s suggestion, I opted for abstinence. At least then, I can say that is why I am not getting routine Special Cuddles. I wish I had this excuse before. I am not expecting a barrage of eligible bachelors taking pity on me anytime soon either. What is really good about all of this, is that if my circumstances change, I get to talk about it with the Medically Trained People. Thankfully, I am a fan of everybody knowing my business, so it’s just an extra person to text, should anybody realise that I am the Bees Knees in spite of My Myeloma. I mean, I am more mobile now.

I then got to pee into a jug, just to confirm that I had not gotten myself pregnant in the last seven days. I was not. Shock, horror. Relief.

And that was it. Well, until next month when I will have to pee into a cup, correction, jug (targeting issues) again, and then hold my breath for the negative because some people are not aware of personal responsibility. Sure, people make mistakes, but I have cancer, so I have to remember Rabin’s Rules. Well, if the time ever arose and I wasn’t a randy drunk, I’d remember Rabin’s Rules.

At least I thought that was it until Mamma Jones asked me the result of my pregnancy test again over lunch. The conversation went something along the lines of this…

MJ: What was the result of your pregnancy test?
EJB: Negative.
MJ: Phew, I thought it would just be Sods Law if you were pregnant. You know… It’s a possibility.
EJB: No it wasn’t. I am a grown up…. Anyway, they did a test last week…. Bloody Lara.
EJB: [uncomfortable embarrassment]

So all you 28 year olds… Try speaking to a parent about that.

It doesn’t matter anymore though does it. I am not a catch and I have taken a vow of abstinence. I hear that it is really fun.

EJB x

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Bring It On Please

I woke up this morning, after I had crashed in my bed the day before, knowing that I was ready. Something had shifted. I was ready to start my new treatment cycle, and as angry as I am, moping is not going to change things. So, I woke up ready to attack this motherfucker with drugs funded by your tax money, and I think I am ready its side effects.

Having read the guidance yesterday, I took my time depositing with the greatest of ease this morning because I know that that is going to become difficult again. Bloody shit. Linseed will also be making a return, that’s for sure. Once I was finished doing that, <em>twice</em>, I got dressed. Some would say that I was overdressed for a trip to Daycare, but I do not give a damn. It continues to be my armour. You know that there was a Mac Matte on my luscious lips. <em>Something about me has to remain luscious</em>. Dancing around the flat in my bra and skirt may have seemed overkill, but it made me feel like Sharon Stone and it just confirmed that I was <em>ready</em>.

The chrome coloured lining is that I have been through this before. I know the tricks of the trade and I will use them to make <em>this</em> easier. Upon arrival at the Macmillan Centre I took myself to the Lower Ground Floor where my favourite Blood Taking Man took my blood, because I had the foresight to pick up a blood form yesterday. I then went up a floor to check that my prescription was ready after being deposited yesterday. <em>It wasn’t.</em> I expected this, I have been through it all before, remember? So I smiled politely and said I would be back. I made my way up the Second Floor also known as Daycare, at 11:00hrs. The best time to receive drugs for you get a free lunch. I did not need to check in, I just said hello to my favourite iPhone Loving Receptionist and that was it. It was like the last three months had never happened. The Medically Trained People were saying hello, seeing how I was and I managed to be glued to my iPhone, iPad and iPod all at the same time. It was normal. A normal to which I have become accustomed since this all started six months ago. When I was called over, a mere ten minutes later, I made my way to my favourite red seat next to the power points and settled on down.

Now, I said to the Medically Trained People yesterday that I wanted to be in and out in an hour. It was actually 90 minutes, but I will let them off that because I asked for some extra drugs yesterday and I was surprised to find this waiting to be administered today. That meant a cannula, but I love the Zometa too much to complain. Cannula’s are not a regular occurrence with VTD.

So there I sat, in my favourite red chair getting the drugs and knowing the forms. I was all zeros today, which means no side effects. That will come. I had my blood pressure taken sitting and standing. They didn’t need to tell me, I knew that was coming too. If this is what I have to do once a week, then so be it. I am ready.

At Velcade Time, when the second nurse arrived, I excitingly declared “Emma Jane Jones. 24th of the 5th, 1984. In the stomach please.” And that was it. It was done. Well almost, my nurse, who had evidently never met me before insisted that I had a blue book to record my appointments. Like I said, she clearly had never met me before. As with PADIMAC, that book will last a week. I do not forget my appointments. I then picked up a blood form for next week and got the lift downstairs, where I collected my bag of goodies, which by this point in time was ready. ID at the ready because I was collecting a controlled substance.

Tonight I have to give myself an injection and take my thalidomide and that will be my Day One done. It’s like the first time all over again.

So I finish as I started. <em>Bring. It.On.</em> <strong>I am ready.</strong>

EJB x

P.S. If you want a laugh, try listening to me pronounce ‘thalidomide’. It’s impossible I tell you. Impossible.

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