Tag Archives: nausea

I Don’t Like Mondays

Tell me why?

Mondays were once upon a time reserved for me not wanting my weekend to end and my working week to begin. In my current treatment cycle, mondays represent something else entirely more negative and I have to admit that I am no longer a fan of them. Gone are the days full of possibilities of the week ahead and in, well, you’ll see…. There may have been a time in my past when I relished a Monday morning. I liked doning a new outfit for my working week that said ‘I’m coming to get you’. Now, that outfit I find myself in is usually my baggiest pair of pyjamas that I will wear for two to three days straight that says something more akin to ‘I’ll let you take me’.

To explain things more fully, I should probably explain that I was not prepared for the start of my new treatment. As something of a veteran now, I was cocky. I thought that I would start my treatment on a Thursday evening and anything to be experienced over the proceeding three weeks would be something I have experienced before. I strongly believed that I would find the treatment to be m easy, simply because I had done it before and lived to tell the tale.  

Unfortunately, my memory is selective. I had forgotten that in the lead up to taking a mountain of Dexamethasone and daily Revlimid tablets, treating my bowel is crucial. I forgot just how horrible it is not knowing when I am going to be unwell, and the frustration I feel when I cannot get out of bed , or successfully count up to 20 and have to watch from the sidelines as my friends live their lives and I lose my independence. During my first cycle, all of this came at me with aplomb. 

Much, much quicker than I had anticipated or hopes, the drugs took over and I could not get out of bed for two weeks. In these darkest of moments, when all I was was my medication,  confidence zapped, I could not see any longevity to my treatment and my life. All I could see was the promise that I would be taking medication indefinitely, unable to earn a living, both outcomes fail to offer me any reasonable quality of life. I’m not asking for parties every night and a warm bodied lover to keep me company, I just want some consistency and a life I can compare with my peers. Sod waiting for a monday to roll round, Cycle 1 made all the days simple merge into each other and made me feel like bother more than a thin veined puppet trapped in the walls of my flat, losing whatever looks I had left, becoming the charity case people contact out of duty. 

I know. I can feel your eyes rolling. 

As my current treatment is fairly similar to previous treatments, in my first cycle, I opted to take my steroids in one go over four days. My previous experience told me this would give me the most free time in the long run. Due to various factors, I ended up doing this after a week of feeling run down rolling into one long period of ineptitude, as well as m swallowing up my week off medication. That first cycle, was without a doubt the worst cycle I have ever experienced since diagnosis and I haven’t even mentioned some of the, erm, smellier side effects.

With the benefit of hindsight, everything about Cycle 1 was a mistake. From my laissez faire approach to it, to the lack of food in the house that could be cooked in the microwave or with a kettle, to my lack of forethought, to my belief that employment was possible, to failing to realise that three stem cell transplants would not have taken their toll on my already delicate body, to me dwelling on the long term impact and disrespecting the now, and mostly, my belief that nothing had changed. Despite all my inner talk about giving up, I believed I was strong and I could manage it with poise, skill and a smile. 

I was wrong.

I needed Cycle 1 to give me multiple slaps in the face. It made me slow down. It made me fill my freezer. It led to multiple trials of laxatives and antiemetics and I think on that front, we could nearly be there. Wherever there is… 

By Cycle 2, the funding for my Ixazomib had come through, that’s oral Cilit Bang between you and me, which once again meant some tweaking to my schedule was in order. When one takes 22-43 tablets a day, that means some tweaking. Firstly, and most crucially, the Medically Trained Person told me that I was no longer allowed to take my steroids in one go. A development that did not please me at all because I like to get the pain out of the way even if it does mean my mouth will taste like tin for a fortnight, my glands will be swollen for a week and washing my crevices becomes a luxury. The lovely doctor, who is not in the least bit scary, softened the blow by halving my monthly dose of Dexathasone. In case you were in any doubt, I live for these small mercies. 

Unfortunately, for the Cilit Bang to work at its optimum, apparently, it needs to be taken weekly, on the same day as the Dexamethasone. Can you see where I am going with this? I have chosen Monday as that lucky day. 

Monday is now known to me and my family, as Heavy Drug Day. My cleaner, who speaks very little English who comes every other Tuesday must call it something else, which probably includes the Russian words for ‘fat’ and ‘lazy’ as I move from one room to the other to carry on sleeping whilst she cleans around me.

In the last few weeks the perverse nature of my treatment has dawned on me. I wake up on a Monday, I could be in a brilliant, jovial mood on that said Monday, but ultimately, I know that at some point that day I will take a cocktail of medicine that will result in me seeing my insides. If he is in the right place and I am too slow, it will also result in the dog seeing my insides. One day, he ate it up as a healthy snack. And that is what my day becalmed. No matter how I feel when I wake up on a Monday, not matter what time I take the medication, I know how the day is going to end.

Such is the doom I feel, my apprehension now creeps up on a Sunday night. The knowledge that come what may, I am going to make yourself incredibly ill, hardly puts me in the party spirit. Most Mondays, I feel like a fool. I feel like I have been tricked in to taking part in some sort of top-secret military physiological experiment to see how guilible people can be fooled into delivering their own torture. It will make you better they said. It will. Now take all the drugs and every single supporting medication you have to go with it. Let it sit in your stomach and churn. Churn. Churn. Then you will see your family again.

The most brilliant part of all of this, is that it isn’t even the Monday when the worst of the side effects hit. It’s the Tuesday. I could have called this blog ‘I don’t like Tuesdays’ but the truth is I find the anticipation of what is to come and the knowledge that I do it willingly by myself, far more ghastly than what actually happens to me on a Tuesday. 

In case you are wondering, in the early hours of Tuesday morning, I will be awoken from my uncomfortable slumber covered in a light layer of sweat, and I will have to quickly get out of my bed and run to the toilet where I will be sick. That is called Vomit Number 1. I am then likely to be vomit up to four times more by lunch. The nausea will last all day. I will feel so weak that I crawl back into my bed and half sleep, half will the day to be over for the entire day.  

Housemate informed me yesterday, that  I do not help myself in this circumstance. I avoid liquids to rehydrate myself because it usually just ends up coming back up again. Not drinking adds to the overall feeling of lethargy and I do not eat. Not eating tends to make me feel even more nauseated and thus the cycle goes on. By nightfall, because I have spent most of the day in and out of consciousness and smelling like a rotting corpse, I struggle to sleep. My body is in all sorts of pain, from a sore throat brought on by my multiple trips to the toilet bowl, a suffering spine from having to run and crouch at said toilet bowl, all mixed with an indescribably horrid steroid comedown. 

It goes without saying that this means Wednesdays, well the Wednesdays I once knew, no longer exist either. I might not be sick on a Wednesday, but I will be weak. It will be unpredictable. I might be able to go to the corner shop for some fizzy water, I might even be able to drink the fizzy  water and follow the plot of a movie, but there is no way of knowing just what my capabilities are going to be on that day or indeed, on the the day after that. With any luck, I will get three reasonable days before it has to start all over again on the following Monday. 

From what I have managed to understand, the level of sickness I get from one tablet is the normal side effect. According to the leaflet that comes with the heavily controlled Ixazomib, I may experience some nausea after taking the pill, but I am definitely at the higher end of the vomiting spectrum. 

I have tried to change the time I take the pill, I have used five different antiemetics, in various combinations and yet the vomit is just as ferocious. The Medically Trained People tell me it is something I have to deal with. Do not be alarmed, I am paraphrasing, it was put to me in a nicer way than that, with understanding and empathy, but it does not change my circumstance of disliking Mondays. For the foreseeable future. 

EJB x

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How You Doin’?

How are you? How you doing? Are you okay? How are things? What’s going on? What’s up? How you diddling? Are you alive? Whaa gwaan?

The above are all questions I have had the good fortune to receive over the last few weeks, even the last one is real. As well as being a fine example of British manners, even the one that is an assault on the English language; I have considered each question to be a subtle reminder that I am failing miserably to keep my  blog up to date. Read between my non-existant lines and you’ll may discern a lack of energy despite the will, but that will only get you so far in coming to grips with the gravity of the question; how are you? 

In my silence, I have discovered that not only are there are a number of ways in which people can ask how I am coping in my post Transplant Number 2 world, but there are a number of ways in which I bombard myself with the same questions. I badger myself. I frequently find myself pondering  how I am, wondering if I am progressing and asking if this feeling will ever end? I am yet to receive, no matter the turn of phrase, a satisfying answer to any of my questions. One sided conversations are almost always, frustratingly unsatisfying.

There are many, many variations of answers to these questions about my mind, body and soul. As if it needed to be said, My Myeloma is anything but clear cut. My answers will change depending on the day it is asked and sometimes, there will be multiple, almost contradictory answers within a single day.  I can be something quite different at 16:00hrs to something I was at 15:55hrs. With regards to this blog, I have decided to provide all the answers in the form of a waffle. Mind, body and faeces. 

To get a grasp on how long it has been since my sister’s stem cells entered my body, to assess the progression, I  referred to something called a ‘calendar’ and discovered that it is 55 whole days since my transplant was completed. It does not feel like 55 days. 55 days of sleep, the hospital, waiting, vomit and poo. It doesn’t not feel like 55 days either; I just feel like I am existing in a volatile limbo where having a concept of time is an unnessary evil. This recovery nonsense is nothing but incredibly slow, and I see it as fortunate that I cannot remember one day from the next and last.

I am still nowhere near answering the questions laid at my door. Other than the ‘I don’t know‘ option, the short answer to these questions and the official party line is that I am  “doing as well as can be expected at this time; and there is nothing to worry about.” Shortly after my discharge from hospital, my transplant was described as “uneventful”.

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Well, that’s great then. I can wipe my brow, exhale with relief, keep my mouth shut and just continue to watch as my body learns to accommodate it’s new DNA…

Only joking, I may now partially be made of my sister, but this blog would not be mine if I just stuck to the short answer. Grab a cup of tea and put your feet up.

The long answer, the answer I prefer to give when circumstances allow, does begin with an “I don’t really know”, then it is immediately followed by one, big, fat “but…”

Apart from the words in my short answer, medically, I do not know how I am. I do not know how the transplant is progressing and I have absolutely no idea when I will know if the treatment has been successful. I knew the transplant would be followed by months of uncertainty, and I prepared myself for that, I just did not know it would be so difficult being completely blind in the matter. It takes an awful amount of mental discipline to stop myself from cracking under the pressure of the unknown, and the silence. 

Medically, I have been told not to worry about my case. My case. I have been told that it is discussed by the Medically Trained People weekly and I know that I should be assured by that. I know that I have no other option but to put my faith completely in the process and the people coming up with my care plan. I do not know how my blood results have changed since my discharge and thus my answers to these all important questions, cannot be based on any scientific or research led evidence, which is an adjustment for me. How I feel, and how I am, is completely separate to my results. 

The official answer, although it is an important and positive one, fails to adequately describe how I feel on a day to day, and week by week basis. In the absence of any clear medical conclusion, I can merely describe what I feel is happening to me and hypothesise what it can all mean. 

I am tired. I know I am always tired, but this post transplant fatigue is different to my previous dalliances  with fatigue. It’s almost always present and there is no visible pattern to when I am going to have more or less energy. I generally, just go to bed one day hoping that the next day will be better. Sometimes it is better, and sometimes it isn’t. Today for example, I have been able to write this blog, do some chores and potter round Marks and Spencer. On Monday on the other hand, I could barely get out of bed, I most certainly could not leave the house. 

Fortunately, I am experiencing less days like Monday and more days like today than I was seven weeks ago. How do I know? People tell me so, because I sure as hell do not have the memory recall, nor the distance to see that sort of progress myself. Okay, I can see it a little bit. I’m not limited to just five minutes of activity a day anymore. I do not know what my limit is, but there definitely is one.

I have surpassed some of my Getting Better Milestones. The first meal I made myself from nothing but ingredients occurred some three weeks ago, and I am now able to prepare at least one such meal a week. I have taken myself to the cinema and I have been on a train. The last train I got did not result in me immediately having to go to bed upon reaching my desination. These things may sound small, but to me, they are fine examples of me clawing back some freedom. I am yet to ride a bus, I do not feel fully confident in sleeping alone and I panic at the thought of a crowd, but I know that these milestones too, will be past eventually.

Before my treatment started, I was told that the recovery differed from that of an autograft. I was told that my recovery would not be one of slow and steady improvement, but one of unpredictable peaks and troughs. It is a warning that haunts me. My day-to-day ability to function my vary, but I dare say that if you saw me weekly since my transplant, you would say that I have shown gradual improvement week on week. I have gone from being able to do nothing but wash myself seven days a week, to be able to hold conversations longer than an hour at least four days a week. My fear, and thus my reluctance to comment on my health and my progress, stems from me  waiting for the fall/s. The fall that everybody warned me of, but nobody can or is willing to predict.

The fatigue may be my biggest drain and the headlining side effect, but there are more and they seem to all feed into each other. Are they a result of the transplant, a side effect of the 40+ tablets I take daily, a symptom of the all important Graft vs. Host Disease or is it simply the toll of three years of constant treatment? I am left to do nothing but guess.

I have gone from having to take six laxatives a day pre transplant, to no laxatives and a requirement for a mammoth supply of wet wipes. I do not know what is happening inside my body for this change to have occurred. I take a number of pills a day that constipate, so I dread to think what would be happening if my mobility was not so dependent on MST. Believe it or not, after 55 days, I still have not got my head around such a visible change.

My nausea is just as unpredictable as my fatigue. I take the prescribed medication and yet there are still days when I see the wrong side of my breakfast and even more days when I feel like there is a chance of me regurgitating more than just my words. Annoyingly, despite all the stools and despite the occasional vomit, my weight remains static. Joy.

I have self diagnosed neuropathy. Unlike the Velcade days of yore, when I suffered from dead arm and pins and needles, I now get all of that, plus severe pain in my fingers and toes whenever I experience a rapid change in temperature. It is a pain that takes the pleasure away from getting into a hot bath. The Medically Trained People tell me this is not an expected side effect from the transplant, and yet it started after the transplant and I  endure it everyday. Have I become a hypochondriac to boot? Probably.

Mentally, I am coping. You can say that I am also coping physically, but I feel like I have no control over the latter whereas I am in charge of how I deal with these obstacles and holt myself together. My brain and my feelings belong to me, everything else belongs to another power.

So that’s the long answer sorted. I can actually exhale now… No, hang on, I think I have something profound to say.

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In My Myeloma experience, I have never felt so detached from my treatment as I do at present. It unnerves me. It is not a feeling I planned for, nor want. I do not know what the caused it, but when it comes to all things allogenic transplant, I feel like I am nothing but a vessel. No, it’s worse than that, I feel like a specimen that is constantly being poked, prodded and analysed; a specimen who is seen but not heard; a specimen who is no longer a human being but is a sequence of numbers and test results. 

That is not something I have said lightly; it is not something I want to think, let alone feel. I’m impatient. I’m impatient for something and I don’t know what.

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So, after all that, be honest. You preferred the short answer didn’t you?

EJB x

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The Montage

If my life were a movie, this blog would be a five minutes montage sequence, deftly edited, to show the audience what I have been up to in the six weeks since my discharge from UCLH’s care.  It would need a soundtrack, all good montages do, take Rocky for instance. My soundtrack could be ‘Things Can Only Get Better’, but then, that would be an anthem that would need to last considerably longer than an edited version of my the last six weeks. For, we all know that things for me, are going to get worse before they have a hope of getting better. No song would really fit this period post Transplant Number 1, so just imagine the whistling theme from Disney’s Robin Hood, for no other reason than the fact it is a jolly ditty and a montage should really be inspirational rather an insipid display of melancholy.

The only barometer I have for how I should be feeling 56 days after a stem cell transplant is how I felt at this point after my last transplant. Of course, I had less Melphan this time round and for better or for worse, when I feel frustrated and fatigued, remembering a previous point when I felt worse, does not make me feel any better. My brain is firmly locked into the now, and knowing I have felt weaker is negligible when held against my current daily battle to get and stay out of bed.

In my head, the montage will begin with that wonderful  taxi ride back to my flat, there might even be a close up of my face showing the relief I felt at being able to go home. This opening shot would then be followed by several different scenes of me in various positions of rest on my bed at Mamma Jones’, her sofa, my bed in London Town and my own sofa. Montages tend to not have subtitles, but somehow, it would portray that as the weeks have progressed, I require less sleep and marginally less rest. The key word there, is marginally. Three weeks ago, I was introduced to my old foe, insomnia, so you would also need to see the nights I lie awake watching episodes of Inspector Morse worrying about my future. Fictional murder is really proving to be a great companion.

The first dialogue would probably be the conversation I had one week after my discharge with a Medically Trained Person, who told me that I would fight with fatigue everyday and then one day, approximately three months down the line, I will realise that I have more energy and I would suddenly find that I feel ‘normal’ again. Then, cut to a shot of my face looking like somebody just told me that a cat was a donkey, because I knew and know full well that that is not what is going to happen to me in three (now two) months time.  I’ll be swapping one trough for another, and that sort of medical autopilot made me want to punch a wall and it has done every time I have thought about it since. I think my acting skills are good enough to capture my ever present anger at getting better to allow myself to get worse…

Very neatly, this brings me to my enforced mantra or should I say, mantras. I’m getting better to get worse to get better. When that one fails, it’s all a means to an end. Then, when things get really bad, I just tell myself a very firm IT WILL GET BETTER, eventually. Or most commonly, my nearest and dearest have to tell me that. Most of the time I am just trying hard to trick myself into thinking that I am not bored of My Myeloma and my inability to do more than five hours of activity a day on a good day. 

In the immediate days of freedom, I spent ten days at Mamma Jones’ sleeping 12-16 hours a day. My sleep was intermixed with trips out for (small) lunches, Tescos, a Hobbit marathon with Haemo Dad and being waited on hand and foot. I am positive enough to acknowledge that I improved far quicker than I anticipated, and thus I was given permission by Mummy Dearest to return to London, where I have been attempting to look after myself ever since. Technically, I had a four day trial run, followed by a five day return to Mum love, due to what I would describe as ‘a bad few days’.

My bad few days included a few tears, a declaration that I had had enough of ‘all of this’, nausea and flu like symptoms. It was a feeling of doubt that passed temporarily, until the next thing happened to rile me up and then it passed again until the next thing happened to rile me up. And so it goes on.

Since my return to London, I have imposed a strict one plan a day rule. On the days I have been weak and desired to see members of My Support Network and planned more than one outside activity, I have been forced to cancel the second, because my body comes to a fast and bumpy stop. By outside activity, I include the odd trip to Sainsbury’s, three hospital visits, one barbeque, a few lunches and several trips to the Hackney Picturehouse. That would work very well into the montage. I really cannot get enough of the Hackney Picturehouse. My inside activity includes daily logic puzzles in an attempt to get my brain working faster than a baby turtle walks, cooking and half watching a lot of the telebox. The montage should, whilst I have the ability to remember, feature a few conversations I had where I was forced to stop mid sentence because I failed to remember the word I was trying to say. It’s not just losing a train of thought, it’s forgetting the actual words. I will always then apologise to the poor unfortunate soul speaking to me and curse the day my blood decided to crap all over my life. 

As the whistling theme fades, the next conversation you’ll hear, would be my trip to St Bart’s Hospital on 11 May. Following a very long wait, I was prepared once more for the uncertainty of the post allograft side effects and told that Transplant Number 2 is most likely to take place during the third week of July. I then got very sleepy. 

Back to various scenes of sitting, resting and attempting to distract myself from the negative impact of having multiple myeloma. 

Before I forget, there should also be the occasional clip of me struggling to eat and drink, then burping. Once I was able to eat, with less oral flatulence, I still for what seemed like several weeks, struggled to drink anything more than a sip without wanting to vomit it back up again or having to lie down to avoid vomiting it back up. It was at this point when I realised the power of hot water and lemon. Cut to my new glass cup and saucer with a few slices of lemon. Thankfully, things have progressed somewhat, so you’ll also have to see a few clips of me being gluttonous. A gluttony that can only exist with a daily does of strong anti sickness followed by a milder dose during the course of the day. Feeding myself comes at a cost, and in the last few weeks I have suffered from excessive hiccups post gulp, chew and swallow. You can imagine what an attractive dinner guest I have become.

Last Thursday, I had my first clinic appointment at UCLH since my transplant. After an unpresidented 150 minutes wait, I met with a Medically Trained Person to tell him how I was feeling, which after such a long wait, was braindead. Intentionally or unintentionally, managed to make  me feel very bad about my fatigue and and other side effects because, in his words, I had a lower dose transplant. In a montage I am not sure how I would get across my confusion as to whether he was saying that I was not trying hard enough to recover, that my symptoms were not real or that I was just plain lazy. How should I feel after a stem cell transplant that was preceded by nine months of chemotherapy treatment? Better, apparently. As for my need for anti sickness, I was told that I should no longer require Ondasetron. Fortunately for my sanity, I had attempted not to take said medication  the previous weekend and consequently spent most of the day looking rather green. 

Can a traditional montage have voiceover? Would that work to depict the insecurity I just described? No? Well, the next scene should do the trick and that would be Mamma Jones saying something along the lines of this specific Medically Trained Person not knowing me, accompanied by  something derogatory about his bedside manner.

And that is the end of it, at least for now. I have a sneaky suspicion that this fatigue riddled, nausea filled, cinephilia, meloncholic and courageous montage is going to go on for a little bit longer. And on. And on.

I might not be Rocky Balboa punching meat or Vivian Ward hitting Rodeo Drive, but it is my life and at least you are up to date.

EJB x 

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Dog Poo Bags

I was told to expect a gippy tummy with my radiotherapy. I have mentioned this before. I interpreted the side effect to mean runny poo, maybe lots of poop, but regardless, I took gippy tummy to be bowel based activity. I was wrong. The zap lasting but a few minutes has actually resulted in the vomit. By my standards, a lot of vomit. The sound of which, scared the dog yesterday.

Bar my transplant, I have been fortunate enough in my treatment to date, to have mostly avoided the act of physical sick ness. Nausea sure, we’re old pals, but it has been something that has been manageable with a few pills here and there. Post transplant, the nausea was something that occurred more than I would have liked, but again, with the exception of a few instances, one memorable one in Mamma Jones’ car, I have been able to avoid something that I have traditionally associated with excessive drinking. Something that is preventable.

I have had five radiotherapy sessions, with my last session finishing a mere hour ago. So far, I have been sick after three of them. A quick, paranoia fuelled Google search yesterday revealed that this is a common side effect of radiotherapy of the abdomen area. As my L1-L5 are the things being targeted, I calculated that it is quite likely that my abdomen may be experiencing a little bit of the radioactive spray back.

Today, because I found yesterday rather difficult and my response to it somewhat pathetic, I came prepared. I have only eaten a pot of yogurt with linseed and a packet of Quavers. One could say the rather tasty New York Deli sandwich from Benugo was wasted on me yesterday. I only had this morning’s food because steroids require food in my stomach. Furthermore, in addition to some strong anti-sickness pills last night and more this morning, in my handbag, you would currently discover three doggie poo bags*. I figured that due to their normal function, they are designed without holes to avoid embarrassing and unpleasant instances of leakage. The bags are an additional contingency because I do not get a great deal of warning and I am currently on a train travelling slightly up the East Coast Mainline. I may have experienced projectile vomiting in the British Film Institute last week, but I do fear doing it in the first class carriage (purchased with disabled railcard discount) would be rather embarrassing and most unfortunate for those travelling on to Glasgow.

The good news is that the radiotherapy ended today. The bad news is that I was told that the side effects, the other being fatigue, could last for another fortnight. Do you know what I say to that? A means to an end my friend. A means to an end.

EJB x

* To ensure that this blog was factually accurate, I again visited the world’s favourite Internet search engine and I discovered there are multiple names given to the doggie poo bags. It would appear that it would be far too complicated to call them a ‘dog poo bag’. From what I can see, ‘doggie poo bag’, ‘dog poop bag’ and ‘bio bags’ are the most acceptable terms. I suspect that this is because the general public have a weaker stomach than I do, and need ‘poop’ presented in a sanitised way.

That was a pun by the way, because all evidence suggests that I do have an actual weak stomach. My weak stomach cannot be sugar coated.

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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

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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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Cyclophosphamide

I am home now and I am currently experiencing the power of the cyclophosphamide. It’s powerful stuff. Prior to this, I have had one type of chemotherapy. This feeling is new. I always expected new side effects, but I realised in the clinic that I was receiving something relatively strong (not megatron strong mind) when I was given my drugs. In addition to the normal anti-sickness, I have another anti-sickness pill. I also have pills to protect my bladder. Yay. They have given me some spares of the latter in case I do not digest them because of mouth poo. Thoughtful.

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I do not feel well. That is a fact and one that I expected. I know there is a purpose to this and it is only temporary, and I shall keep telling myself this if in fact the vomit does come. I am also waiting for blood in my urine, which I am told may also happen.

I am taking all the precautions. I am drinking and peeing when required. I ask you this though, try drinking 2-3 litres of water when you feel nauseous and see how far you get. It’s a struggle, but one I have experience before and one I got told off for not doing. I am putting a lot of faith in the powers of squash right now.

So, this is it. I’ve fallen off the wagon at speed. If it turns out that I do have to vomit, I will do it safe in the knowledge that some good will come out of it. It’s like riding a bike with stabilisers before you can cycle on two wheels. My two wheels is the transplant.

Roll on the transplant. I can take it. I think.

Oh, in case you were wondering just how ill I feel, take a peek at this. Loved ones, prepare yourselves, I’ll look so much worse when I am in for the Megatron.

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EJB x

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Riding It Out

Good morning.

Yep, yep, yep. I am still in bed. A mere 19 hours and counting. The situation is as it was yesterday evening, rounded off by a good 14 hours of sleep. I apparently had one or two dreams about cooking fried eggs on my forehead and/or legs. Though my brain and my thermometer told me that I was not hot enough for that game. Unfortunate.

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The plan for the rest of my day is riveting. Except, it is the absolute opposite to riveting.

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I just have to ride it out.

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Knowing The Cycle

I am wiped out. As in, actually wiped out. For the last four days, I have been into the clinic everyday, for a minimum of four and a half hours each trip, and I have received four doses of chemotherapy and two reduced doses of velcade. And thus, as my body now battles four days worth of rather strong chemicals, and I guess My Myeloma, I am absolutely pooped.

Current symptoms include the following:

β€’ fatigue – I fell asleep on my way home in the ambulance
β€’ lack of concentration
β€’ nausea
β€’ stomach cramps
β€’ slight neuropathy in my left limbs – aka the pins and needles and more cramp
β€’ hot flushes
β€’ a constant taste of metal in my mouth – Tin Mouth, Tin Mouth! The un-kissable dream
β€’ headache
β€’ neck stiffness
β€’ constipation

Don’t feel sorry for me though, oh no.

What differs from this cycle from my previous three cycles, specifically the last one when my symptoms worsened, is that I know there is an end date to this misery. I am not entirely sure whether I will be fortunate enough for this to pass by Saturday morning but if it doesn’t, I know it will pass at some point over the weekend or early next week. Hell, it may even pass tomorrow. Who knows? Must stay hydrated.

I have no control over this feeling, but I do have control in how I manage it mentally. So, what you are actually reading is a happy blog, you just need to read between the lines.

My key message to you and myself is that this will pass. Although I am pretty much bed bound right now, I know it will pass at some point. These current feelings and sensations are just another chapter in my future best seller ‘A Means To An End: Marry Me, I Am Bald, I Had Cancer, But I Think You Are Fly’.

In the long run, feeling this shit, is making me better. One day, some clever person will invent drugs that do not have side effects, but in the meantime, I am a brave enough Very Pleasant Young Lady who is just going to lie in bed by herself and ride out this rather nasty wave.

As I am not one to shy away from the hideous side of my treatment, please feel free to view this photograph of me looking tired. I am sure Housemate saw worse when he got home this evening.

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Sleep tight now.

EJBx

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