Monthly Archives: July 2013

0.01

I spent all day yesterday in bed. I did not shower. Filthy bitch. There were many reasons why I did not leave my bed yesterday and keep up with my personal hygiene, all of them, rather predictably, stem from stems. Yesterday, despite the fourteen episodes of slime and my cramps which felt like toddlers were doing the Macarena in my stomach, I felt like that side of things, my bodily fluids, are improving. It is hard to full decipher whether this is an accurate assessment, or whether it is an attempt by me to fool myself into thinking I am getting better.

That said, my fatigue don’t lie. By now, we have such a relationship, where I am merely passive aggressive with him, when he comes in expecting a clean house, dinner and the mental capacity to jigsaw. There is nothing else new in my bag of myeloma goodies, unless you count the sore throat, which worsened after I foolishly drank some water in my sleep yesterday morning.

In spite of all of this tomfoolery, during rounds yesterday, something exciting happened. It’s not actually exciting, it is just words, but to me, they were magic words because it meant that there is starting to be a foundation to my hope that this will be over soon. Dare I say, maybe even a scientific basis to it. The Senior Medically Trained Person told me that I was going toturn a corner in the next day or so. Tea! She did add that this would not result in me feeling better instantly, but I will feel an improvement at least. Tea! Please let it mean tea! Oh bugger, what does an improvement look like?

I occasionally thought about this between my snoozes and cramps yesterday. Like rock bottom was not tangible, neither is an improvement. It’s more fun to look forward to though. . The waiting again, is another thing that would frustrate, were I not on a healthy dose of opiates.

If I want something in my pocket, some proof, I could use that fact yesterday, I had a minuscule, as in, means very little, neutrophil reading of 0.01. Every other day this week, it has been less than that, as in, no reading. It’s a tiny step forward, but one that put a smile on my greasy face regardless.

My fingers are firmly crossed that today sees an improvement somewhere. Come on. My fingers are also crossed for a shower for I need to erm, remove some of my hair before it all by itself.

EJB x

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The Perfect Cup Of Tea

The perfect cup of tea is made with boiling water, a strong English breakfast tea bag, left to infuse for at least three minutes, which is then battered by a spoon and removed, before adding full fat milk to taste. The tea is then drunk at a leisurely pace, occasionally inhaling the warm vapour as you lift the cup towards your lips. The perfect cup of brew is drunk safe in the knowledge that it will not be making a reappearance, within five minutes, from my anus.

Similarly, water tastes best when it is ice cold, served in a heavy based glass tumbler and not when proceeded by vomit and oramorph.

One day, one day, I will be able to experience these again. I do not aspire to much.

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Rock Bottom

I want this to stop. I don’t want any more pain. I do not want to experience the pain I am already experiencing. I do not want to produce from my mouth and nose, anymore green vomit with egg whites. I want to be able to eat. I don’t want to have to have a green poo, if you can call it poo, on the hour every hour. I do not want to have ‘a good case of oral thrush’. I hate relying on the Angels for every little thing, which last night, included putting my bed sheets on me because I did not have the strength to do it myself. I want to be able to sleep properly. I don’t know why my skin has decided to turn a certain shade of grey, but I want it to be its normal colour. I want to be able to drink without feeling like the universe in my stomach is staging a coup. I want some energy. I really want all of this to stop and normality to return.

The thing is, it’s not going to stop, not immediately. And I have to deal with this. I am not wallowing and I am not crying. The beauty of this process, is it cannot be turned around. These feelings, and these experiences were determined last week, we just did not know how they were going to manifest themselves. We still don’t for certain. The fact that I cannot back out, means that even though I may feel weak and a scaredy cat, I am forced into a position where I have to be strong, because all this shit, literally, is going to happen anyway. This makes soldiers of everyone, regardless of whether they thought they had the strength to do it or not. Get through this and I’ll never look at somebody who complains of a cold in the same way again.

Clearly we have assistance from the troops, for me, this means going straight to the oramorph now in the constant event of pain, because nothing else will curb it. My doctor told me this morning that I have to stop trying to be brave. I would not say that trying to remain well mannered is brave. I think he was referring to the use of morphine and how long go I go without asking for further assistance (T13 déjà Vu). How bad is bad? Is this rock bottom? It looks like it. After my experience last night, which was worse than the night before, I have reconciled myself to the fact that rock bottom looks something like this, and needs several doses of oramorph, to make the future look rosy.

And so, from rock bottom, I wish you well.

EJBx

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Expecting the Expected

It is strange to be surprised by the expected, but I am. I knew that I was going to have a dodgy tummy, nausea and fatigue, I have been preparing for it for so long, I was almost bored of it, but now I am in it, I can wholeheartedly say it is nothing like I expected it to be.

I think my current situation, is one where to truly understand it, one has to live it. Saying the words, will not make you comprehend the force. And let’s face it, there is a lot of force. No amount of preparation is going to make a stomach cramp any easier.

On Sunday afternoon, when the diarrhoea started to come, I sat on the toilet and thought to myself, that if that was it, it was going to be easy. Clearly, that wasn’t it. Fast forward a few days to last night, when I was forced by my body to have my tenth poop of the day, whilst doing that, I developed a cramp that was so hideous, I vomited (500ml by the way) and sweated. It then took, three more visits to the toilet, five hours, IV anti sickness, IV fluids, oral anti sickness and stomach pills and oramorph for the pain to subside. Until that pain did subside, I spent that time awake, unable to do or say anything, lying on my bed thinking, this must be the worst I am going to feel. It must be the worst right?

I do not know if I have yet hit the bottom. I currently figure that my diarrhoea and vomiting cannot worsen, but my fatigue can, if I continue to lose fluids at the rate I am losing fluids. That’s basic science right?

I am going to try and explain my current role in this world as Green Excrement Girl, but I am not doing it to gain your sympathy, it is just to explain what this feels like. I’m having to think of it in much the same way; if I start to feel sorry for myself, I become a martyr to it. I am no martyr. Right now, this is my job. So, as well as expecting the expected, I have to accept it too. I am just trying to ride the most unpleasant wave that has ever existed.

Since Sunday evening, I have not been able to hold down any liquids or foods that have entered my body. The Medically Trained People were trying to get me to drink 2.5 litres a day, but it was decided yesterday, that attempting to do 0.5 litters caused so much discomfort, that I did not need to do it. I really am trying, and yesterday, I even felt hungry, but after a few sips of water, spoonfuls of mashed potato, the mixer in my stomach started churning and I had to run to the toilet to deposit it. This happens whenever I drink or eat. On Monday, it was worse, because I ate much more, thus the sheer volume, was, well, impression. Mamma Jones was soon sent out to buy moist toilet paper. Practical. I do not want to irritate any piles.

Managing the diarrhoea is one thing, but it is not my only symptom or problem.

Practically, it requires me getting out of my bed on the lefthand side to unplug my pump, wheel my fluids and myself round the foot of the bed, navigating wires and other obstacles, past the sofa, to the bathroom. On competition, when I am back on my bed, the pump needs to be reset, because it’s battery is broken. I taught myself how to do this yesterday, because I could not stand all the beeping.

Physically, the diarrhoea is accompanied by nausea, which until last night, had just been nausea, and not full scale vomiting. If you were wondering, the vomit, was the same colour and consistency as my poo; slime green. So yes, nausea, it is a bugger. I feel constantly sick. There are scales to it, but in short, there is always a feeling of sickness around as is its friend, the stomach cramp. The stomach cramps, for ladies, feels like the worst sort of period pain you will ever have, at it’s worse, I imagine it is like giving birth. I actually think this. It constantly feels like they is a wooden spoon, in my stomach making potions, occasionally making sure it gets all the ingredients by scraping round the sides. Last night, I knew there were drugs in me, because my mind started to create stories for what was happening in my stomach. I kid you not

So, as somebody has had a nasty bout of food poisoning will know, because of all of the above, I feel weak. I am dehydrated, my blood pressure is low and I constantly tired. Yesterday, because of the dehydration and the byproduct, dizziness, I had to sit on the toilet for ten minutes longer than needed, to ensure I would not faint on the long walk back to my bed. Again, with that sort of activity, I am running a constant risk of piles. I am talking grade 4 level here.

Above are my main adversaries, but I also continue to fight a fever, a toothache, a sore throat and ugliness. Oh, and my neutrophils are flat.

Fortunately for me, the Medically Trained People are marvellous, and more crucially, they have seen everything I am experiencing before. The Doctor explained yesterday that they can give me so many more concoctions to get me at my most comfortable, she also said, which I guess is a good thing, nothing is happening that should not be happening. I am no medical marvel.

The difficult thing with all of this, is that nobody knows for certain if this is going to work. I have seen a lot of comments on the blog mentioning the word ‘remission’ and I have been asked about it much more than that in person, but the truth is, my transplant is unlikely to give me that. Everybody’s experience is different. It’s my best chance. The reboot is what I need. Back in January, when I was sitting on my paraprotein level of 20, I was told that it would be highly unlikely to walk out of a transplant with a level of zero. At my last Clinic Appointment, the Senior Medically Trained Person said that a decision will be taken after my transplant as to whether I have to start a new course of treatment straight after or if they are just going to let my body be for a bit. It could be that my body does surprise everybody, but I think we all need to be realistic about what my transplant is going to achieve. If the last 11 months has taught me anything, it is that My Myeloma is one stubborn arse. Time will tell. I am going through this, putting up with this, because somehow, maybe not immediately, I know it is going to give me a holiday, but more importantly a return to normality.

As for today, I am hoping for a better one. Late last night, my stool sample came back and I do not have an infection, which means that I can take Imodium. Yes. Imodium. The day might not be better, as I was threatened with having to measure all my outgoings yesterday, which sounds fun. Time will tell I guess.

Today is Day 7.

EJB x

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The Little Princess

Yesterday, I was absolutely positively excited and relieved when Mamma Jones entered my hospital room to tell me I was being moved up to haematology. It was even better, I was moving up to T13, back with T13s Angel.

What followed after that, seemed like an incredibly long wait until the porter arrived to wheel me up, it may have been a long wait, I currently have no concept of time, so it could have been 10 minutes.

It was a long wait in my time, because by yesterday morning, I was truly dissatisfied with the treatment I had received after coming through A&E. I had been put in a private room on a ward I was well acquainted with after last year. The room was not clean. There was blood on the floor and somebody else’s urine in a jug in the bathroom. Mamma Jones found a bogie on a wall. It was just, not nice, and it set off an uneasy night, which was made worse by the nurse’s response to my concerns about the cleanliness. She was coarse, dismissive and appeared to have no understanding of myeloma nor what being neutropenic meant. Upon arrival I had asked for some more morphine, and she said she would bring it in 30 minutes because it had not been two hours since my last dose; it did not come. She advised me, neutropenic and all, not to touch a lot in the room if I was concerned about the cleanliness, that comment made me itch. I also asked for some water, which I finally received at 07:00hrs. Prior to that, however I was given 11 pills to swallow, fortunately I had taken my own water. When my water was delivered in a jug, I asked for a cup, and I was told that there were no cups available. I did not drink the water.

During the night, I requested some drugs which the on call doctor had prescribed me. The ward I was on did not have these in stock, and another nurse said that the pharmacy would dispense it in the morning. She had tried to source the mouthwash for me, but failed, but was able to give me something similar, so I was thankful that she had tried to help me. In the morning, I then queried this again with the nurse with the jug, and I was told that she would not be able to give me any additional drugs until I had been seen by the doctors and as I should not have been there, she had no idea how long I would have to wait. I responded with a smile and condescension and explained that I had been promised the drug the previous night, and that she did not need to wait for a doctor because a doctor had prescribed it on my file. After a few minutes of her arguing with me, she then grabbed my file handed it to me, and said that I should point it out then. I did just as she asked, and she left. I did not get the drug.

As I waited for Mamma Jones, it was clear that people had no clue about me. Nurses, porters, cleaners and other staff wondered into my room without washing their hands, or they left my door wide open. The cleaners for example had a conversation with each other in my room with the open door about my complaints about the cleanliness. At one point, I heard somebody outside my room say ‘no,no, no, you cannot go in if you have a cough… She’s got something which means she can get more ill’.

When the porter finally arrived, I was tired and ill, but I was ready to be moved. We were accompanied up by a new nurse, who was, odd. Odd is the best and most appropriate word. After I was out of the room, and Mamma Jones was gathering my belongings, she said ‘have you got your tiara?’ I was confused by life in general at this point, and responded as such, to which she responded with ‘you know, little princess’s have tiaras’.

I am 29. I have cancer. I am in the middle of a transplant. I am no princess. Try a day in my shoes you haggard, spent too much time in the sun, horse faced wench.

This made me angry for the rest of the day, to be sure. The anger grew however, when thankfully, I returned to a place that 11 months ago, made what was happening so much easier, and I encountered some exemplary care. There is no other way of describing it, though I am pretty sure I will try during my staff.

It may not be that haematology nurses are any better than other nurses, but for me, they have something that makes it easier to manage my illness, so imagine what wonders come out when they are treating somebody who is having a transplant. Yesterday, one of the Angels had to go through some of my excrement for medical purposes. Unbelievable.

It seems to come so easily to them, and that made me angry, I could not see why the handful of nurses (they do not deserve my usual moniker), would spoil it for a majority. Fortunately for the dear, sweet wonderful NHS, I am with Medically Trained People all time and I see the good they do. If, however, my experience had existed solely of the hours I was in yesterday, then well, the less said the better.

Maybe I am a princess because my main Angel (for you get a lead), told me that she was happy that she had me and said when she saw my name on the list of patients she hoped I would come to T13 because she remembered me from last August. Yep, that gives me a big head. It upset me at the same time, because I do know what I did differently with the nurses down on the first floor.

As the day progressed, the main Angel was angered by the earlier comments by the woman, and raised it via the Angel Sister, who by the way, is also very nice. Not at all scary, which is always a bonus. To cut a long story, slightly short, the nurse thought she was being funny. As for the cleanliness, I will be complaining about that in due course, but I am just thankful that I got out of there.

I am told that whilst I may change rooms at some point, I will not be leaving T13, and to that, you can get an Amen. The illness is definitely here, in all of its glory, and I need to be in a place where everybody knows my name, or at least, be somewhere where the care as at the absolute highest of nursing care.

I believe I am where I should be, and my, is that, and the IV, making this much, much easier.

EJB x

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An Image Conscious

Some people may be surprised to hear, that even though I have had several episodes of diarrhoea in the last 48 hours and I have now stopped taking any fluids voluntarily, and thus I am very woozy, I am still conscious about my body image.

I want to look nice.

Obviously, there is no point on putting make up on in here, it would just come off on my pillow. My hair is going go fall out, so, why bother with gel now? There is also little point in me getting changed out of my pyjamas, as there is no discernible difference between day and night for me, apart from, during one of these things, I get visitors.

This morning, aware that I am at my least comfortable and confident, imagine my mortification, when I was discovered by not one, but two nurses (you need two for opiates), lying on my bed in old lady pyjamas, with a bra gathered around my PICC line, which unknown to me, was making my pyjama top pull up, and reveal my saggy left breast with a mind of its own. I was wearing a purple t-shirt and lilac patterned bottoms. My PICC Line is in my left arm. I did not have a shower yesterday. FYI.

That is how I am rolling.

Thankfully, one of the Angels tidied me up before the Doctors came in.

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Whoopsie

Perhaps it was destined to happen. I joked about it happening for long enough. I could not help it. I am sick. Really sick. It was unexpected. It’s the drugs fault. Even though I am an adult, this was beyond my control.

Oh God, I just shat myself.

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Admittance Part II

It turns out that sleep is not coming easily to me today and my oramorph is wearing off, so I thought I would use this morning’s annoying twilight efficiently, and fill in some gaps. Actually, they are not really gaps, it is just an excuse to show a photograph of myself that is so hideous it looks warranted mugshot, after a drug fuelled crime spree and orgy.

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Such was my fever when I arrived at the hospital, that my clothes were drenched. I was actually thankful for the hospital gown. It was embarrassing when I first met people, I was convinced the the people waiting patiently in reception, looked at me and thought, why does that stereotypical obese person get to push in? It’s probably why I opted to walk it instead of an ambulance.

I felt somewhat stupid on our arrival, that although I was in a lot of pain, my temperature had gone down to 37. When I heard that, I thought that the Medically Trained People there and the haematologists were going to think I was a complaining weakling, who could not handle a teeny bit of diarrhoea. It was a thought that has been following me, how bad, was bad enough? Is it really that bad if I can take photographs?

Fortunately, or actually unfortunately, the extent of my stomach cramps was clear on my face, my bloods showed that in the time it had taken for me to leave the clinic earlier in the day and then, I had actually become neutropenic sepsis. So, I was not making it up. Phew. A second temperature reading had it near to what I made it at 38.2.

I managed to get some witty banter in during my examination, my so called graphic measurement of the number of wipes required to describe stool consistency is an example of why I am an exemplary patient. Despite, trying to win the staff over, I still feel like I could have gone through the night, not required special treatment in A&E and been able to walk into the Haematology department this morning. Less fuss, less dramatic.

As much as I would like my treatment in the NHS to only be undertaken by haematology or oncology nurses, I must admit that the nurse who treated me in A&E went above what I would expect. Perhaps she was just thankful that I got her out of cleaning up somebody else’s poo, but either way, she made sure I was as isolated as I could be, and when there were no porters, she escorted me myself, even after she had handed me over. That’s nice.

And then I went down memory lane to the Acute Medicine Unit, where the room alone is making me itchy, and they cannot locate a second pillow. I don’t ask for much really, I am neutropenic and I have lytic lesions. These things have to be considered by the staff in this faceless ward I am in.

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Now, if I could only just be sick, I would be very much obliged.

EJB x

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Admittance

At 15:00hrs this afternoon, I returned to my room, hoping that I would be able to get through the night before I became neutropenic and before my diarrhoea worsened.

Evidently, this did not happen.

After hours of checking my temperature seeing it creep towards 38, and managing my frequent trips to the toilet, Mamma Jones called the Ambi Care helpline at 21:00hrs, and we were told to come in via Accident and Emergency.

So, a quick walk up to Warren Street Station, and down Euston Road later, to A&E I arrived. By which point, my fever was in full bloom, and I looked like , well, I do not know what I looked like. I looked unpleasant. Mamma Jones said I looked like a criminal.

They helpfully would not let me sit in Reception, which led to me standing in a corridor for 5 minutes. I was seen in the tiny A&E room before I was moved, in a wheelchair to the section where the exciting things happen on Casualty.

You hear a lot of crap here. We literally heard somebody crapping themselves, which definitely smelt ‘offensive’. There I was until 23:00hrs, during which time, I was squirming in pain, trying to think of the correct answer to the official medical barometer of pain, had tests taken and I was seen by a haematologist. He established that I was neutropenic. I had a temperature of 38.2 and I really did feel like an alien was going to come out of my belly.

Due to the smell of faeces, I was moved to a private room, whilst they located a bed for me. There were no beds in haematology. Brilliant. Slick. Efficient.

At 23:56hrs, I arrived in my room for the night, I say night, because there is no way I am staying on a general ward, under the care of nurses who do not know what myeloma is. I am tired, I am in pain, I am on oramorph, and still I can confirm that I do not like this room. I doubt that it has been properly cleaned for I have found a jug with urine in it and there are blood stains on the floor. I have been advised not to touch a lot in my room. Mamma Jones apologised for my reaction.

Now, to try and sleep. I can see Gower Street… I want the penthouse.

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Community

Today, I find myself in Ambulatory Care for longer than I anticipated because the nurse has decided to give me some fluids whilst I wait to see the on call doctor. I thought I would be in here for 30 minutes maximum today. I was wrong.

The other people sitting with me, did not think like me when they walked from the Cottam Rooms this morning. They came prepared for the long haul. Everybody makes polite conversation in here, even if it is just a smile. I look at all the other patients and think, we’re in this together, but I am more important. It creates a nice sense of community to be sure.

I have said this to the Medically Trained People, so I have no problem with saying it here, the communal space of Ambulatory Care could be larger. In fact, I would go as far as saying it is cramped. I could touch the man to my left and I do think he would appreciate it because he is sleeping.

As I sit here, on a chair opposite the nurses station and to the right of the little reception desk, I am in the company of four other patients, all men, all older than me. We are close enough for me to hear their date of births, and I can confirm that the person nearest to me in age is 14 years older.

I recognise all the people from the hotel. The one I know the best, because he is the chattiest, is to me right on his mobile phone. I do not know why, but he reminds me of Roald Dahl, is it because his standard uniform is of somebody about to go on a modern safari? He might me South African. He is not having a transplant, I am not sure what he is in for, but he seems to be holding up much better than me. He ate at Wahaca yesterday, it’s not proper Mexican food you understand but it is an acceptable European fusion. He’s playing on his MacBook. He likes to Skype his wife, apparently. As well as reminding me of Roald Dahl, looking at him makes me want to watch the first three Indiana Jones movies.

So Roald Dahl/looks incredibly like a photograph I once saw of my great grandpa, is sitting closest to the entrance. He is getting a bag of something the size of a cows udder.

To the left of me, essentially next to me, is a trendy man in his forties. I saw he is trendy because of the people I have seen him with. One of them wore tights and Dr Marten’s on Wednesday and is a fan of bleached denim. Crazy. Today, he is wearing black jeans and a navy jumper. He’s very tired. I know that because I heard him telling the nurse he was and he is asleep as I type. He does not want to go into the hospital yet… I get the impression he has been here before. He knows all about my stools because the open plan setting does not offer enough privacy for me to have had that conversation privately. Not that I care. They offered me a private room; I declined.

He might not be asleep actually, he could just be pretending because I just saw his left leg move. To be honest, if I had to have had the conversation with the camo shorts with a red flannel shirt wearing man to the left of him about IT sales, I would have pretended to sleep. After 5 minutes of listening to their convention, I had to reach for my earphones. Poor man.

The boring man, sitting in the corner, is about to leave. His wife has been sitting with him the whole time and has not said a word the entire time I have been here. Maybe she doesn’t like IT sales. Hang on, she just said thank you to the nurse. They are off. His feet are swollen I note, so it is good he just walked over to the bin and disposed of his Lucozade bottle. As they walked out, a guest belonging to the sleeping man arrived. It turns out, he was actually asleep. She has lovely hair. She looks sad. I guess she is sad, because I saw the man on Tuesday for the first time and I can tell he looks worse than he did then. For ‘Lolita’ reading girl with the nice hair, the visible deterioration must be difficult.

The man who was in the far corner, also with a wife, has also left. He did not smile. I suppose one could say, if you are stuck in a artificially lit, white room on a Sunday, you probably do not have that much to smile about. I do not think like that of course. I am peaches and light. He looked like he was wearing a dressing gown, but it was actually an open blue shirt.

There are 3 nurses in here today, treating us and a further person in one of the private rooms. The room seems cluttered. I do tend to see more clutter when I am tired. There are silver trollies and stools as far as the eye can see, a blood pressure machine in the middle of the floor, and as the three of us left in here are on IV meds, we’re attached to those things on wheels, which are taking up more room as they sit to the left of our chairs.

Why am I the only one who enjoys the reclining facilities on the chairs? Fools.

Roald Dahl has opted to eat lunch. I was going to try it, but realised that I did not want my one meal of the day to smell like baby’s sick. I consequentially feel sick. It is just the two of us now…

I have to go and give them a certain type of sample now, I hope it does not put him off his lunch.

I’ll try and be subtle.

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