Category Archives: Shitting

Clogged

I am going to spend my day waiting to get poorly. If that doesn’t happen today, I am going to spend all day tomorrow waiting to get poorly. I have been told what symptoms to look out for over and over again; the squits, vomit, mouth pain and fatigue. Done. Squits, vomit, mouth pain and fatigue. The emphasis on this story is the squits. I am expecting, and have been expecting lava.

So imagine my surprise this morning when I realised that I am clogged up. That’s right, the increase in medication has made me constipated. I was not expecting this.

Fortunately, Mr Constipation and I have met before… He’s not going to know what’s hit him next week, neither, I suppose, will my anus.

EJB x

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Nervous

I am not going to lie, this morning, I am all about the nervous fart.

Thank goodness my window is open (for about twenty more minutes).

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Better Out Than In

Better Out Than In, that’s my motto. It’s my motto for every aspect of my life; not just for my faeces. Holding stuff inside you, I find, just manifests into something much bigger, heavier and uglier, and before you know it, you look just like the woman in the new advert for Senokot. Uncomfortable and ready to cry/stab somebody with a lollipop stick.

I am a human, and thus I am fragile, I am not infallible, and there are times when my body and me to not heed our own advice.

Not this last week….

It gives me great pleasure to announce that for the last seven days, I have woken up to the natural desire to play sudoku in a room in my flat (or Mamma Jones’ house) that is not my bedroom. For about five minutes. There may have been two occasions after the first puzzle, where I may have had to use a quick cheat to help me through a tough spot, but that was only because I was being impatient. Regardless of that, and I thought I needed to be honest, I am proud of my body. I cannot remember the last time it wanted to play sudoku seven days in a row at roughly the same time everyday. It won’t last, but it makes me feel better, laying down, depositing, those numbers. Better out than in.

Clearly, when things such as this, work normally, I do get a slight fear that my treatment is not working. When I am very ill, bedridden with side effects, I have to tell myself that it is only the treatment working overtime and it’ll be worth it in the long run. The problem with that logic arises when things are hunky dory. It’s fine though, because I really have been super tired this week, so, I hope that’s enough. It cannot be all His tit to my tat.

A much lighter and cleansed,
EJB x

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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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The Reminder

Until last week, the last time I spent four days in bed was the epic Christmas of 2012, after my last dose of dexamethasone. Then there was last week.

The thing about spending a long period of time in bed, is that it gives one time to notice things that when they are busy or active, they probably miss. I say one, I mean me, because I would not presume to speak for others. Otherwise I might open up a can of ‘roid rage on myself. There you go, that’s this week’s fixation/target of irrational anger… Back to my bed, so yes, I spent a few days noticing things about my body that I had missed when I was feeling better. I didn’t actually miss them if truth be told.

My current ailments, because that is what I am talking about, look something like this:

• Neuropathy – I told you about this the other day.
• Pain – My back is playing silly buggers. I’m regressing. Sure, I actually blame this increased pain on the fact I had been lying down for so long, but I have gone back to the point where bending over is a difficulty. That is why this weekend, I decided to pick up and spin my 20 month old niece around a bit. In your face lesions. I am paying for that today. I am also paying for playing crazy golf on Sunday. That is probably a better indicator on the state of my back.
• Pain – The pain is not just limited to my back. Oh no, that would be unfair to the rest of my body. I also have a sensation of having a chest infection. It’s not a chest infection. I may not be medically trained, but the sensation is familiar to me. It’s my body’s way of telling me that there are lesions at the front as well as the back. I recall me telling Middlesborough last July that I could not go to Zumba, because I had a chest infection. It wasn’t a chest infection.
• Fatigue – I also told you about this the other day.
• Bowel – nobody knows what it going on here. One minute it is shy and the next minute it is in my face. In short, it is not right and it is taking up a considerable amount of my time dealing with the ‘issues’. My current favourite friend, is called Suppository. Let’s hope my back does not get any worse, because that may make our relationship problematic.

To top things off, I am still getting the hot flushes, which was delightful last night at dinner.

There you go, that’s a list. That’s how my body is rolling. These little illnesses like to compete with each other for my attention. They have it. The good news is, is somehow still manage to go about my business.

EJB x

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Dumping

If one were to rewind three months to the last days of PADIMAC, I believe I would have said that there was one thing I would never take for granted again. It’s something every able bodied person can do, even babies. At the time however, I was not able bodied. I was stuffed.

Fast forward to last Friday, after nearly three months of being treatment free, and I can honestly say that I had once again started to take my natural right to deposit, for granted. Then this VTD came along, a rude reawakening for those of us unfortunate enough to have to go through cancer treatment. Gone is the morning routine. Gone is the morning reprieve. Gone is the not thinking. In their place is an indescribable feeling of discomfort that makes you want to rip out your innards. Approximately 5lbs of discomfort… I would imagine.

Everything about having myeloma is difficult, but this side effect is my worst, because let’s face it, pooing should be simple. Every toilet based joke hinges on this assumption.

One day, the Medically Trained People may design a chemotherapy drug that does not make one feel the need to gentle coerce their waste out by talking to it, whispering sweet nothings, insisting that there is no need to be shy and that it is better out than in. I imagine some people would do this, I am not saying that is what I did this morning.

It is strange to think that I am now back in the position where a nice bit of splash back is worthy of celebration, but unfortunately I am. After Housemate left this morning, I celebrated. I celebrated for the first time in four days. That’s right, four days. In case you were wondering, that is 16 meals including a curry, a tin of baked beans (half cold, half heated), a mug full of linseed, prunes, a banana and three birds eye chillies.

Sometimes, shit just is not fair.

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Peeing

Last night, my insomnia was boosted by a fun side effect from the cyclophosphamide. I think this email pretty much sums it up.

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Now, I am going to let you into a little secret. A doctor told me that I must go to the toilet whenever I had the urge after having this delightful chemotherapy. Seeing as this side effect hit me in the middle of the night, I took his advice literally and sat on the toilet for nearly an hour…. I do not think that is what he meant.

The email basically sums up that I have no shame, but, I think I knew that already.

Anyway, it was good that I asked the question, because it led to me having to take another dose of a drug called Mesna, which by the way, tastes like artificial beef flavouring. Much like I imagine, a supermarket branded packet of beef flavoured crisps would. It was not a pleasant taste in my mouth. My mouth should be saved for good things.

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Pride

I am constantly asking myself whether I conduct myself in a manner in which I can be proud of. It’s a question I asked myself before I had myeloma, but I have experienced, with myeloma, there are many more occasions where there is the possibility of me acting like a big old twit.

On the whole, I think I have handled My Myeloma pretty well and I hope that I will continue to do so. Though, in a world where everything is exaggerated, so too are my actions and this gives me reason to think. Every time I have an uncontrollable crying session, like yesterday when I was told that my treatment may be delayed, I am ashamed. I’m ashamed that I could not be stronger and hide my fears, weakness and disappointment. I am not proud when I argue with my friends. I could always handle a situation better, but it’s a struggle when my mind is all over the place. I can find no pride in the times I have lost my temper with the daycare nurses for delays with my treatment, accept at NHNN, they deserved my wrath.

The thing is, if I want things to be normal and my life to continue, I’m going to make mistakes and questionable decisions. I am going to upset people and I am going to upset myself. Although I would like it to, cancer does not make me invisible. Even superheroes are flawed. I know this because I have seen the movies.

That said, there are many daily things that I do find pride in. During PADIMAC, any poo was worthy of a photo. On Saturday, I used the Hoover. And today? Well, thus far, I am so proud of myself that I was able to produce more than three litres of piss in the last 24 hours. I filled a bottle.

My self worth ain’t going anywhere. Hear that Fake Menopause?

EJB x

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Hand Washing

A myeloma sufferer nearing their transplant date has many things to worry about. I can say this with the greatest authority, for I am a myeloma sufferer nearing her transplant date.

My greatest worry at the moment is not the 2% mortality rate, the high probability of mouth ulcers and lava like shit or the weight loss. Oh no, my greatest worry is how the hell I am going to remember to wash my hands in my new immune system-less body.

I have been told that I need to wash my hands after I have been out in public or handled money, before I prepare food, before I eat food and apparently after I have gone to the potty. Okay, I knew the last one already, and almost always did it.

In my adult life, I have strongly believed that one should expose themselves to some germs. I thought it made me strong. Sure, I washed my hands after I disposed of my waste or handled raw chicken, but that was my limit. Anticipating a world where I have to wash my hands after I shake somebody else’s does not sound like a fun one.

I am a thumb sucker. I love the comfort I get from it, but it’s not going to taste very nice covered in antibacterial hand wash is it?

Am I going to have to start opening doors with my elbows? Should I wear a mask in public? How much does hand wash cost? Is there a cancer benefit for people who are medically required to wash their hands more? How dry will they get from all this washing? Will I need a bigger handbag to accommodate the hand wash and moisturiser I’ll have to cart about with me? And what if I wanted to taste somebody else’s lollipop? Will I have to buy my own?

I have never licked a door handle, but knowing that I can now never lick a door handle seems unfair. I feel like I have missed out.

It’s a can of dirty worms.

Fortunately, I am pragmatic. If I need to wash my hands like an obsessive, then I will. I have enrolled myself on an intensive hand washing course. Apparently, every time you wash your hands you have to wash between the fingers and the wrist with soap for at least 10 seconds. I will find out whether I passed in June.

Wish me luck. I’m reaching for a First.

EJB x

*PUBLIC SERVICE ANNOUNCEMENT*
Antibacterial hand wash is not a sufficient substitute for soap and water. Medically Trained People are advised to use it twice before washing. True story.

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Naked!

I was once shy.

I should clarfify this point, because I imagine those of you who know me and are reading this, would disagree that I have ever been ‘shy’. I was incredibly shy about all issues relating to my body.* My body is fat, hairy, covered in old stretch marks and don’t even get me started on my breasts. I have been in constant battle with my body image my entire adult life, strongly influenced by the kind boys at school, who used to call me ‘pork chop’ or made me put a pencil under my boob to see if it passed the droopy test (I didn’t). In short, there has been a distinct lack of self confidence.

And then on 14 August, all that changed. I was diagnosed with multiple myeloma and I was in a hospital. On my first night in hospital, I had to have an ECG. By the time they came round to do my ECG, something I had only heard about before on ER, I was in my pyjamas and hooked up to fluids via a cannula. That ECG was a quick introduction to hospital life and a lesson of how your body parts are not primarily sexual objects. During the ECG I asked if I could keep my bra on, the male nursing assistant said yes, which I was incredibly relieved about. I did not want to whip my baps out to a complete stranger. It transpired however, that I could not have my ECG with my bra on, nor my top. I slowly, degradingly, had to remove my clothes, where at the end of it, my right boob was flopping out and my t-shirt was over my head, with my body covered in stickers. I remember crying during the whole thing.

As my thirteen night stay progressed, I had to be washed by mother, have my legs shaved by my sister, had an Echo, got stuck on a commode and whilst under general anaesthetic, somebody, I assume a Medically Trained Person, inserted a catheter up my whatssit.

All false shame I had about my body, disappeared. It had to.

I did not realise just how much it had disappeared until I had the ECG last week. When I was asked to remove all clothes on my top half, there were no feelings of modesty or apprehension, I just took off my jumper, shirt and bra and let my two little friends hang right out. I suspected a change when I was at Mamma Jones’ house for Christmas. I would allow the females in my family to see me in a state of undress and think nothing of it, something I know I would not have done before. I do not come from a naked household. On more than one occasion, I failed to shut the bathroom door.

I have been liberated.

I am not quite so liberated in the flat, because I am a considerate person. I acknowledge that it would not be fair for Housemate; I don’t think he needs the image of my naked form in his head all day long. Although I am liberated, I am aware that my form is not for everyone, and you know, there is something called decorum. That said, I do occasionally get changed with my door open. I just forget. Sometimes, I let my boobies hang loose under my pjs whilst making a cup of tea. Other times, I use my arm as a shelf, depending on who is in the house. Thoughtful.

I guess, when you have to routinely talk about your bits and pieces, and show them, all embarrassment disappears. If I continued to be embarrassed, I could only imagine how worked up I would get, and I have more important things to fret over. When everyday is a battle to survive, what your body looks like, shouldn’t and doesn’t matter anymore.**

To be clear, I am not yet a nudist, and I do not think I will ever be the person who walks around the swimming pool changing room with their lady garden on show, but I do hope, that My Myeloma has enabled me to be more comfortable in my own skin. As bumpy and lumpy, with a texture of orange peel as it is, my body is battling something horrific and if it succeeds, I do not think that is something to be ashamed of anymore.

It does not hurt to try and see the positive side of My Myeloma, and this new found acceptance of my physical appearance is evidence of that.

Embrace it.

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EJB x

* Toilet talk with certain friends and Big Sister is an exception to this rule. Poo has always been fun.

** I am full of contradictions. I will probably have to remind myself of this when it comes to the big head shaving.

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