Tag Archives: toilet

Like A Bullet From A Gun

WARNING – 💩THIS BLOG CONTAINS TALK OF FAECES. HARD, SOFT AND SHAPELESS FAECES.💩 SO DON’T READ ON IF YOU HAVE A WEAK DISPOSITION. IF YOU DO READ ON, BE THANKFUL I HAVE NOT MENTIONED MORE.*

One of the biggest challenges I am quickly trying to come to terms with is the change the transplant and it’s drugs are going to have and have already had on my toilet going activities. I have spent nearly three years complaining about the impact my previous treatments had upon my bowel. Nay, it is more than that, I had publicity reconciled myself to that fact that unless something was drastically wrong with my body like a course of radiotherapy through my stomach or a hefty dose of Melphalan, I had a life of overly formed, every other day excretion with constipation ahead of me. I understood that and I knew how to manage it. Maybe I had even come to like it. At least it was predictable. Ghostly. 👻

Since my release from hospital however, I have been forced to discuss the taboo that is poo, to avoid mass panic and hypochondria. My mass panic and hypochondria. I can feel my body changes and I am on high alert for it and this is outwardly, the biggest change thus far. Gone are the instantly satisfying rabbit pallets, and in with what I do not know what. I could not make my way through the consent or any of the transplant literature without coming across the word ‘diarrhoea’, so the sudden change is not unexpected. It’s just unwanted. And so are the new definitions. 

I could go deep into my concerns and summarise the many conversations I have had with the Medically Trained People about why investing in some nappy rash ointment is a good idea, but I think the conversation below sums up my current dilemma.

  
Such is the importance of stools in this post allo world, I have to inform the Medically Trained People if I have more than two sessions in a single day. Manners would usually dictate not discussing this with anybody else, let alone the out of hours hotline. 

On this subject of toilet, I am beyond cautious. You can tell nurses in particular are used to this sort of talk because my nurse on Monday compared the consistency and colour of her breakfast drink to what I need to be on high alert for, whilst she consumed it. Take that Weetabix. I welcomed the clarity. I have sample jars in my handbag, should there be a sudden need for analysis. I am not actually going anywhere requiring a handbag at the moment, so the fact the jars are still in my handbag are a testament to my current energy levels.

Earlier in the week, I came across the notion of ‘constipation overflow’. If you are interested, that is what I have by the way. Constipation overflow. There is no need for the nappy rash ointment just yet.

The sad truth is, despite my panic last week, I haven’t experienced diarrhoea yet. My friend would be correct with his definition of a ‘loose stool’. For me, this is just another unpleasant experience and it is one that realistically is only going to get worse. Another reason why I must remember my fluids!

The diarrhoea will come and come it will and when it does, I’ll put on my rose tinted spectacles and look in my medicine drawer at my Sainsbury’s own brand suppositories with yearning.

What a depressing thought. 

EJB x

* Humans do Number 1s too, and they are not immune from the allo side effects either. FYI

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Decorum

There were two events yesterday, two and a half really, which proved to me, if I needed anymore proof, that I now have absolutely no decorum whatsoever. The subject in question, was of course, my faeces or my lack there of.

Everybody requires a little bit of context and this is mine. I am currently on six tablets of docusate sodium a day plus two senna pills before I go to bed, and still, despite this hefty dose of laxatives, going to the toilet continues to be the bane of my daily existence. In case you were wondering, myeloma is the bane of my world. At least once daily, I also have a portion of linseed, which I believe gives the medicine a healthy, natural helping hand. Linseed also means I occasionally have to visit a Holland and Barrett, thus allowing me to feel superior to the unhealthy masses, that is, until I look in a mirror.

I have long been of the opinion and voiced it several times, that constipation is one of the biggest, unspoken downsides of my medical predicament. I had an appointment with a Senior Medically Trained Person recently, who I had not met before, but Mamma Jones once saw on the television and I instantly took a liking to him when he asked me about the difficulty of my bowel movements.

In that appointment, he told me that one side effect of the radiotherapy would be a slightly jippy tummy. It was a statement that solidified my positive opinion of him. I have now had three sessions of radiotherapy and that particular side effect is yet to appear. I am forgiving him of that, if in a few weeks time, I am able to sit on the toilet without a fear of snapping my spine in three when the struggle ups it’s game.

That is the unsavoury background to my daily (if I am clutching the glass half full), trials and tribulations. I will indeed talk about them to anybody who is willing to listen. The only difference is, depending on the company, I might deepen the code of the subject in which I speak.

Yesterday then, I had a particularly traumatic morning. I had to be up and dressed by 10am, ahead of the Patient Transport Service collecting me for my two hospital appointments of the day, the first of which, was at midday. The PTS can pick me up anytime between 10:00hrs and my appointment time two hours later. As such, stage fright usually kicks in and I cannot pass what needs to be passed because I need a clear 30 minutes to do it. Unfortunately for me, the biological need kicked in around 11:15hrs, shortly after I discovered my transport was not in fact, picking me up at the agreed time. In a panic, I booked a taxi and then visited the room between my kitchen and my bedroom. It was an act that was indeed a mistake for there was not enough time for me to do what needed to be done.

This brings me to my first example. Mid act, I had to give in. As I uncomfortably made my way through my flat to the waiting taxi outside, I said something to Housemate that does not need to be repeated here, such was the level of my crudeness. All that needs to be said is that it Is a term usually reserved for the delivery room in a hospital.

It was a very uncomfortable taxi ride, during which, it became apparent to me that I was going to have to be late for my counselling appointment at midday. Not wanting to be rude, I thought it necessary upon my arrival at the Cancer Centre to inform the relevant people that I may be a little late to my appointment.

Most people would probably have asked the the lady on reception to inform my counsellor that I would be late and send my apologies. Not me. In my second example, the conversation went something like this:

“Hi, I have an appointment with Sxxxx at midday, but I am going to be late…. I have a problem. Not a bad problem you understand, but the one people get with their medication that they don’t really talk about… You know… Um, I just really have to go to the toilet and I’m really uncomfortable and it might take a while. Can you let her know? I’ll go down to her office when I am done.”

It was a conversation that was greeted by a knowing smile, and off I went. Fifteen minutes later, with a large smile on my face, I returned to the reception desk to see smiles all round. I then proceeded to discuss matters in more depth for five minutes more.

Later in the day, I received a text message from a dear friend of mine, who is also experiencing similar woes, and what followed was a lengthy, open discussion about my troubles of the day and the effectiveness of linseed. It was that conversation that confirmed what I have long known… Cancer causes constipation and I absolutely love shouting it from the rooftops.

💩💩💩

EJB x

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Surrender

There comes a time in everybody’s life when they have to surrender. They have to give in. Their hands are tied. They have to retreat. They are getting ready to wash their hands.

I am at such a point. I am at the end of my tether. I am waving the white flag.

I am finally ready for the laxative.

Please do not be disappointed. I no longer have the time to be constipated. Whilst we are on the subject, I do not have the time for the other thing either.

Yesterday, I realised after spending two hours on a ceramic bowl sweating through my nightie, that I was fighting a losing battle. I can recall my 17 month long reason for not taking laxatives but my enemy has changed, and I do not think my weapons are strong enough. I am too busy to remember to prepare and eat linseed everyday. The fortnightly velcade injection is preventing me from forming a routine, and it is keeping me on my toes with its unpredictable attacks. For two months, I have been unable to take my eye off the ball due to a very real fear of being caught short. I am fighting on my own. In this fight, it is not fair for me to slip my bowel woes into conversations with Housemate when he returns from work. Nobody needs to know. Big Sister is also not prepared for my observation on the frequency and odour of my wind. It is not right.

Enough is enough. My head is bowed.

The truth is, there is not enough time between my injections for my body to regulate and there is too little time between my injections for my body to get used to the cleaning product. It is torture or at least any torture I have ever known. Two months of it.

So, with the treaty signed I really home with these laxatives that I, Emma Jane Jones will be able to start making regular, erm, reparations.

EJBx

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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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Movement

After a lengthy period of the trots, I am informed that some individuals, may experience constipation. When one is taking six drugs on top of other drugs, which is said to lead to blockages, a person may experience constipation. When a body subject to change, experiences a lot of change, I imagine, a human, may experience constipation.

The Medically Trained People expect some difficulty in this area, and persons who may be troubled by infrequent stools, are offered medicine, to ease the process along somewhat. Some individuals opt against using this medicine because it makes their insides feel like they are on fire, regardless of there being a need to incinerate their waste or not. Such people, let’s call them patients, may suffer from lengthy periods of constipation, especially, when they usually use their diet to regulate such things, and they currently do not have a diet to speak of. Tricky.

Sometimes though, life cannot be that bad. Life cannot be that unfair. And so, today, after a six day absence, it gave me great pleasure to say “welcome back Buddy, welcome back”.

Thankfully, it was a painless reunion.

I called my Mum.

EJB x

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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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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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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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The Taboo Of Pain

I know it is not a thing to be discussed in polite society, but, if you have ever experienced constipation whilst having a fractured rib, you would want and need to tell somebody about it.

It hurts. Plain and simple.

Afterwards, I recommend the douche.

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