Tag Archives: sick

Burping

Many things happen to the human body after a stem cell transplant. Many things. The Medically Trained People and some Toms, Dicks and Harrys, have made a purposeful effort to make sure I know what these side effects are, several times over, and regardless of whether I asked for the information or find it useful. For me, knowing of the possible side effects, helped me prepare in the sense that I did not panic when each thing popped up, but I could never really know the severity of the side effects, until I experienced them, no matter how much people who have never had a transplant told me about them. In the end, I wasn’t surprised by any of them because I expected them; I just couldn’t imagine them.

Since the 16 July, there is only one thing that has come my way that I was not in my reading materials, it was completely unexpected and without warning. It commenced after I resumed eating and drinking. The surprise side effect, my friends, is called, the burp. I burp a lot.

It does not smell.

If one were to think inside the box, my current side effect is not a shocking one. I don’t think it is anyway. It’s just not something that oozes femininity.

My main task at the moment is drinking. Apparently, I am to drink 2.5-3 litres a day. An achievable task to be sure, if one has not spent a sustained period of time replacing consumption with mass excretion, as I have. My stomach has shrunk and now, the minute something enters it, I am forced, forced to pass wind.

You may think I am exaggerating, but I am not. If putting stuff down my gullet was a constant, so would burping be. Cuppa tea? Sure thing, parp. Cocktail sausage? Why not, Homer Simpson. Sip of water? well I have dry mouth, crackle. Snap, crackle, bloat, burp,

With building up my strength, comes wind. It’s the pay off nobody mentions. Nobody mentioned that I would not be able to stomach fizzy water either, but I had worked this much out because I passed all my GCSEs. If only belching was something that people generally associated with elegance and manners. They don’t of course. People are prudes.

Hypothetically speaking, if I were to have burped prior to my transplant, which to be clear, is just a hypothetical, it would have sounded rather masculine. EJJ like, as somebody helpfully described my vomiting sound last week. I imagine, if I were to have burped in my old immune system, it would have been long and loud, something from deep inside my gut, so powerful one could feel the vibrations through their feet. Hypothetically.

The actual burps I am producing now, do not sound like that, which is a good thing given the frequency. Mamma Jones described them as sounding ‘sweet’, which in itself was nice, seeing as that is all I did on the two hour drive home last night. There isn’t much power behind these little mouth explosions. One might be able to mistake them for a cat’s purr. Occasionally, the burps can hurt and are accompanied by a little something something, and when this occurs, I reach for the Domperidome. If it persists, I reach for something stronger. Must love the drugs.

The unexpected… It keeps me on my toes, and contributes significantly to my current fetishist status.

Fit.

EJB x

Advertisements
Tagged , , , , , , , , , , , ,

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

Tagged , , , , , , , , , ,

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

Tagged , , , , , , , , , , , , ,

Megatron

So, there we have it, I have had the Megatron, formally known as Melphalan. It has actually started. I have said it three times today, and thought it a few times more; there is no going back now. After six months of planning and waiting, I am here. I am scared, but today, my main emotion is excitement. Getting the Melphalan in me, is my starting point. Thank fuck for that. Finally.

At 13:56hrs today, a big old bag of the toxin, made its way through my PICC line, after an anti-sickness, some steroids and saline. This was followed by another trickle of saline. Easy peasy, right? Well, I guess for that, and the three anti sickness drugs I have in my possession, time will tell…

20130716-224030.jpg

On the side effects side of things, my body is behaving the way I was told it would behave. I feel okay. Yes, ‘okay’ is the right word, well, maybe a few notches under ‘okay’. I am tired, sure, I have had a busy day after all, and I have been out this evening looking at the healthy people on Tottenham Court road whilst eating pizza and drinking as much fizzy water as I can because my stomach decides that it cannot take it anymore. I have not been able to be as attentive to my phone and social media as I wold have liked, and I have only checked my Blackberry once. I have managed to see some friends in a place that was not my hotel room, because the Medically Trained People advised me to leave my half way house, if I could. I am not pooing out my immune system yet, nor am I vomiting my guts out. Give that time.

I am aware that I had many challenges today, I do not need to spell that out, but I can confirm that my biggest challenge looked something like this:

<20130716-224037.jpg

br />
20130716-225330.jpg

For 35 minutes as the Megatron entered by body, I sat on my adjustable chair and made my way through not one, not two, not even three, but four orange Calypsos. It is a well established fact that I like ice lollies, but not that much. My initial approach had to be adapted approximately twenty minutes in, when I could no longer place the entire icicle in my mouth to suck because my jaw started to lock, and had to resort to licking the tip. Boys, take note. I tried to be graceful, but alas, the other patients thought it was funny (they had been through it before), one challenged me to see how many I could get through and I realised that I cannot eat with ice in my mouth, especially to strangers.*

And that was it. Chemo in. I am going to lose my hair now. I am going to get sick. And, I knew it when I woke up this morning after a terrible nights sleep, I knew something I was not ready to say until that point… Bring. It. On.

Bring it on. I can take it.

EJB x

* The record in the Ambulatory Care for the number of ice lollies in a single session by the way, is nine. I think they had a sweet tooth.

Tagged , , , , , , , , , ,

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.

Tagged , , , , , , , , , , ,
%d bloggers like this: