Tag Archives: bone marrow

Grafting

Four weeks ago, 31 days ago to be precise, I swallowed what *might* be my last ever Ciclosporin tablet. It was a noteworthy moment. It was more than that, it was a milestone that warranted me taking a badly lit photograph to commit said moment to my iCloud memory. 
 
It was a milestone that was a long time coming and one which came with something I have been yearning for. It came with a deadline. At least, it came with something that is as close to a deadline as I can get. If I learnt anything last year, definite deadlines and timescales rarely exist in the weird and wonderful world of myeloma. So, when the Medically Trained Person said that if I was going to get Graft Versus Host Disease, it would happen within six weeks of me coming off the medication, I finally had a date in my diary. Additionally, as you do need to get all the relevant information, I was told that within the six week window, I would be most likely to show symptoms at the two week mark. 

If the odds were ever in my favour, I had an unpredictable Christmas ahead of me. I had something that could almost be called a plan. I had my date. A date to look forward to and a date dread. At least, that is how I felt for the first fortnight.

Four words have been stuck in my head and followed my thoughts from the moment I knew I was going to have a donor transplant. Graft Versus Host Disease, known as GVHD to save my fingers. It might be the one medical term that is easy to pronounce, but the mechanics of it, the good and the evil of it, waiting for it, are anything but easy. 

From the moment my sister’s cells entered my body, not a day has gone by where I have not replayed conversations in my head telling me that a transplant will be (much) more successful if one gets GVHD. That a lasting remission is most likely to occur if one gets GVHD. That one only wants minor GVHD and not severe GVHD. GVHD can be worse than the cancer the transplant was intended to treat. GVHD can kill you. My post transplant world has been categorised by these thoughts and unbearable waiting to see which one applies to me the most. 

Another thing I have learnt in the most painstakingly slow way, is that the symptoms for GVHD are so broad that it has made it impossible for me to trust my body. Let’s face it, before my last transplant I already had reason enough to not trust my body. It has left no room for rational thinking. Everyday, multiple times a day, with each bowel movement, scratch, headache, bout of indigestion and shooting pain, I would wonder whether it had finally come. It did not. It was like failing my GCSEs on a daily basis. 

I woke up and continue to wake up everyday and my body does not feel right, and I do not know the cause of it. One could say I ‘do not feel right’ because I am recovering from a transplant, but I want to know more. I need to be reassured and I cannot do it myself because my body does not feel my own. Maybe I should ask Big Sister. I am 98% her now after all…This constant questioning of the unknown something, is one awful, inescapable disease. Half hypochondria, part anxiety with a sprinkle of depression and that’s before we get to the diagnostics of the physical ailment. It is a weight far beyond my actual sizeable girth and one that has often been too much to bear. Telling myself that the last 150+ days have been about recovery and not failure has been my full time job. I could not talk or write about it through fear of jinxing my snail-like progress. 

My long standing mental list of acceptable GVHD symptoms consists of oesophageal problems, diarrhoea and a rash. By December, despite developing a bottom sponsored by Andrex, the Medically Trained People told me that I had not developed anything from my list. As unpredictable and unformed as my stools had become, the fact I had not lost any weight, led the Medically Trained People to conclude it was not bad enough to warrant the GVHD label. During that conversation, the Medically Trained Person started to talk about the prospect of not getting GVHD. I left St Bart’s dejected. I felt unwell, just not the right sort of unwell.
If I thought that my days post transplant on Ciclosporin were difficult, the booming ticking clock that has been everyday post 15 December has been something all the more sinister. The first day free from the nightmare inducing horse pills, felt promising. My stomach was worse than usual and I could not stop scratching my neck. Both things soon subsided and realistically, were most likely a symptom of my nervous energy.

Over the next fortnight, I felt awful. Each 24 hours felt like double that. I was impatient. I repeated potential outcomes over and over and over again. I am embarrassed to admit that I occasionally gave in to the Bad Thoughts. The more I waited for something conclusive, for my pot to boil, the more I predicted failure. Worse than failure, a few times, I concluded that not getting GVHD which would shorten any remission, would be the easiest outcome for me. It would mean that I did not have to live with the unpredictability of waiting for a relapse and I would not have to deal with the uncertainty that awaits me when I attempt to rejoin my life. The bottom line was that at least that outcome would have a definite ending…
Then do you know what happened? 

Two weeks to the day after I took my last pill, I got a mouth ulcer. By the end of that day, I had two, and then by the following day, my mouth felt like sandpaper. It still feels like sandpaper. I hoped, and a quick Google search made me hope that little bit more that the cause of my pus filled mouth was the elusive GVHD… One week after that, I opened my mouth to a Medically Trained Person and do you know what she said? 

Read between the lines.

In that single moment I went on a metaphorical diet and I exhaled. I text members of my Support Network an update. I phoned Mamma Jones with the news, to which she responded nonchalantly, “I knew it”. Most tellingly, I left the hospital with my smile intact despite having to wait two and a half hours to rehydrate to allow for my bloods taken.

Despite allowing myself to bask in my relief for a day, I’m not buying any party poppers or downing champagne yet. The champagne would be wasted on my rotting mouth anyway. The six weeks are not up yet and although I am now on medication to treat my mild GVHD, my fears remain. No longer am I waiting to get GVHD, I am now hoping that it does not worsen. More hypochondria. My liver has not been functioning as well as it ought and although I was told not to ‘panic’ about my results, I challenge anybody in my position not to do just that. After all, I may have finally got what I wished for, but I still do not have a body I can trust. 

As I said at the start of this, there is a very fine line between good and evil. I have two more incredibly slow weeks of trying to stay on the right side of it. 

And then, what the hell is going to happen? 

Patience is not my virtue.
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”.

πŸ‘πŸ‘πŸ‘

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.

πŸ’‰πŸ’‰πŸ’‰

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.

πŸ’‰πŸ’‰πŸ’‰

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

EJB x

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Thrushed Out

It breakfast time. A Sunday morning breakfast time no less. I knew this long before somebody physically walked in to my room to to let me know it is breakfast time at all, because of the din they make outside whilst dishing up and not because I have the body clock of somebody permanently located in Beirut and found myself naturally hungry.

Anticipating many people getting round to seeing this later in the day, maybe after they have enjoyed their own Sunday brunches (in my head midday is a far more acceptable time for the first meal on a Sunday than 08:15hrs), can I recommend that you do not view it with or just before food? Consider this a health warning. I do not have the money to be sued. For, on this Sunday morning, I am writing to you about thrush. My very own oral thrush to be precise.

The possibility of something going wrong with one’s gob post chemotherapy is pretty high. So high in fact, there is a reference to it in an episode of Sex and the City and we all know how revered that show once was and therefore it is a fact most accurate, no? None of my three chemotherapies for Transplant Number 2 required ice lollies, but as with all other post IV chemotherapy I have had, as a precaution, I was given mouthwash to use. Crucially and this was my downfall, bar the the First Transplant the Actual First, when I did get some dryness and soreness, giving me the slimiest voice for the radio; I have never experienced the mouth ulcers I understand one can get from their chemotherapy. These mouth ulcers, I understand, are not the cancer equivalent of an unwanted spot by the why, in some cases they can compare with hair loss and are often treated by the morphine. I still find this difficult to be true but it is.

And still, despite knowing what could happen, I became complacent. When I was given the first mouth wash on Day -6, which required mixing two separate salty ointments in a glass,  swooshing the combined fluid around my mouth for 60 seconds and then discard. For four times a day.  I do not know if I suffered some sort of trauma during my childhood, but there is no way I can gurgle anything for more than half a minute in my mouth. When I attempt to do so, my  cheeks feel like they are going to explode and I almost always become so close to gagging that gagging is the reason for me spitting. 

My name is Emma Jane Jones and I am bad at mouthwash. 

Despite my complacency, I thought to myself, make a compromise, do two swooshes a day instead of four. I had enough on my plate. And when I was sick, would that mean I would have to endure it again? I am not sure how many I actually did take but I know there are currently a few boxes of the stuff on my windowsill at home and I have been  showing what as a child I called a ‘Geographical Tongue’ since last Tuesday. Geographical because the fungus grows like a map. God, I used to love showing it off. 

On my transfer from the day ward on Wednesday, it took well over 24 hours to get hold of a mouth wash again, but this time,  I was no longer on salt water. I was on Diffram. Nothing tastes worst than Diffram. Diffram ruins whatever you eat for the rest of your life. I tried to get then to take it back, to revert to the salt water, but I was told it was too late. My mouth had gone too far. Not only am I on the luminous green Diffram four times a day, but I also gave to take four doses of a mouth drop that taste like something you would likely find at the bottom of a certain sort of elderly lady’s handbag. 

It’s all my own doing, however, I know this and I cannot complain.. At the moment it feels like there is a furry film covering my entire mouth, unless I use the Diffram straight after brushing my teeth in which case, it feels like I have salt and wounds and they are becoming one in my mouth. My mouth is surrounded by some dry flaky skin that used to be my lips.

Like I said, I’m not complaining. I should have used all the mouthwash. If I had used it all and result was  the same, I’d be less angry because at least I would know I had done everything I was supposed to. One cannot rewind the clock and if I could, I definitely would not rewind it for this, so I am letting the eight year old me exhibit for a little bit and ask innocently, would you kiss a mouth like this?  

     

A resounding ‘No’? Okay then.

EJB x

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Made Up

Lipstick brings joy to my face. Foundation, a  splash of TouchΓ© Γ‰clat, a sheer eyeshadow, a bit of eyeliner, a tot of mascara and little something something on my checks, apparently brings the life to my face.

Making sure I wear lipstick has been a cardinal rule of mine since My Myeloma began. The only times it has been broken, if you exclude the morning run to the shop, has been during periods of hospital admittance, days of the steroid crash and during Transplant Number 1 The Second when I felt it would be inappropriate to whack on some matte lipstick for a 0.2 mile walk.  I’m no Gwen Stefani. At that time, I also stopped wearing make up because I just found it became too cumbersome, when I was only leaving my bed for 30 minutes a day and lifting a blusher brush felt like I was bench pressing whatever is considered a heavy weight to bench press.

I do not know what I envisaged for my appearance during Transplant Number 2.  Comfort would be key of course and the outfit would have to be put together to allow for easy access to my PICC line and the minimal bearing of the arse crack. Next to that, because I knew I would be sitting on a bed for much of the day needing comfort, on a cancer ward, I concluded that wearing a wig would be unnessary. I originally wrote ‘redundant’, but that is very unfair for all those people, who I once was, who  wear their wigs for themselves. As for the rest,  my vanity must not have as much hold of a over me as I once thought it did, because I really did not give my hospital appearance and attire  any thoughts other than the  practical ones I mentioned above.

Well… that was until people started telling me I looked ‘unwell’. Or ‘tired’. Or ‘tired AND unwell’. Or when they avoided all niceties at all and said I look ‘awful’.

Why I wondered? Why in a matter of days had I gone from looking non descript, I had a ‘great’ on 10 July, to an ‘awful’? The answer, I pondered, has something to do make up. I stopped wearing the stuff at some point over the weekend when I forgot what which one was my right hand. In truth, I should have stopped wearing it a few days before that when I dropped the Chanel Blusher in the dog’s bed.

It begs the question, did the chicken come before the egg? Did I look awful when I stopped having the energy to put my make up on, or did I look awful because I did not have the energy to put make up on? Do I look tired because my neutrophils have dropped from 3.3 to <0.1 in a week or do I look tired because I stopped wearing my make up? 

I imagine it is a combination of the two, but I am certain that a man  going through what I am, would not have experienced such a vocal change in perception about his appearance to the extent I did,  just because I happened to stop wearing make up at the same time I started to go downhill. I asked Mamma Jones about this today and she cannot be objective as a mother and just said that I ‘looked like me.’

Two days ago, despite assuring a Medically Trained Person that I felt exactly how I had, for better or for worse, for the previous few days, I was referred to a Senior Medically Trained Person because I looked like I was ‘struggling’. I think this translates to I had some eye bags. Yesterday, a nurse who had not seen me for since Friday told me that I looked ‘worse’. Would I have looked better if my eyes were brightened by mascara? Was it worth me even asking? 

Would I be in my own bed now if my physical appearance hadn’t ‘deteriorated’? I am still eating, drinking and temperature free. Would the need for this current precaution had been less pronounced if I had been able to put a bit of effort into my appearance? 

Is wearing make up as a young female cancer outpatient and looking ‘normal’ an expected pre-requisitite to make the other patients’ and the staff’s day more palatable? I am certainly more comfortable when I can give my face  the time it needs.

Are all the make brands and their advertisers correct? Do women look better with make up on? Do I look better with make up on? I have been financially unable to purchase a daily ointment from MAC since Christmas and my cheekbones have felt positively non-existence since. I am used to be being told that I ‘look good considering’ and there is the frequent surprise of ‘you don’t look ill’. Complements I would not have, if I were to lay my face bare with it’s menopausal skin and hair, blotches and wrinkles.

Has putting the brush down been too much of a shock? Inwardly, over the last week I have felt grey, sunken, like no part of me has any definition whatsoever and I am in dire need of fluids. Was my war paint shielding others from this struggle? No about of make up could beauty up my blood results, nor could it stop me from wanting to sleep in the Day Clinic.  Using the term ‘decision’ loosely, but how much was my decision to stop wearing make up until I felt able to apply it better than my three year old niece the removal of a mask?  And how much of that decision made me look worse than I feel? 

Most importantly, I always considered myself something of a light make up abuser, but given recent comments, just how much have I been wearing? 

πŸ’…πŸΌπŸ’‹πŸ’„

EJB x

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Definitely Not Normal

There is nothing more anticlimactic than the word ‘transplant’ prefixed by the words ‘bone marrow’ or ‘stem cell’. Having experienced two SCT’s before, I knew this time round was not going to start with good looking people wearing scrubs shouting “stat”, whilst sporting my blood all over their latex gloves. My loved ones were not going to be waiting patiently for news in a reception area and it would appear the only soundtrack thus far comes from Julie Andrews. My allogenic transplant has looked nothing if not boring. I am convinced that the optional removal of a bunion would have looked more exciting than what we experienced up to and including on Thursday.

I’m poised for drama, but I do not know what that drama is going to look like yet, or when it is really going to begin, so in the meantime, I will share a few photographs of how Medically Trained People have made the extraordinary, appear somewhat ordinary.
Harvest

   

    
 
Day Zero The First

   

   
   

   

Day Zero The Second

Many people, included I, am surprised by fact that the stem cells are not tested where they are harvested at St Bart’s. Instead, on each Day Zero after Big Sister had been drained and her pins were with needles, her stem cells were couriered to The Royal Free Hospital, some five miles away for testing. They would then travel back by courier, before entering me. It seems a strange world we live in that my sister’s bodily fluids could have visited the magical place known as Whitechapel without their maker being present. 

The cells were taken away in branded picnic bags. On the second day, Big Sister and I showed far too much excitement towards the courier returning our precious goods  when unfortunately for him, he came across the two of us in a lift. We squealed (because it meant I would be home by 20:00hrs) and he looked at us like we were at the wrong hospital. I captured the moment. 

  
Waiting

  

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Consent

In this world full of litigation and compensation adverts on digital TV channels, it has become ever necessary for the NHS to protect itself from being sued. For a patient, this means that before any procedure, you are required to sign a form to say you understand what is going to happen, and crucially, what could go wrong. 

In My Myeloma history, I have encountered many a consent form. Of course, when I was first introduced to them in August 2012, it did not register in my spaced out mind what they were. The second (I think) one I signed was for my kyphoplasty and I remember the fear of ‘2-3% chance of permanent paralysis’ like it was yesterday. I have consented for every round of treatment, a few of my biopsies, my two PICC lines and the two transplants since. That’s a lot of  carbon paper. At UCH, the most serious procedures come with an A3 consent form resulting in a log of thin white paper shoved into my handbag pending imaginary filing. My medical file gets the top yellow copy.

At University College Hospital, granting consent in my experience, is done on the day the treatment starts. That is not how St Bartholemew’s rolls. For on Monday, five weeks before my provisional Transplant Number 2 date, I sat down and listened to a kind Medically Trained Person reel off everything that can go wrong with the next stage of my treatment. It is not a moment I relished and one I wish I did not need to experience. I am very much in the camp of ‘just get on with it’, in other words, I want to be ignorant. I know that this is my only chance to beat this, what else do I need to know? 

A lot, apparently. 

Whilst I might not want to know percentages and other figures, other people in my life do. I suppose it is an easier way to assess the seriousness of a procedure. Although, facts and figures never truly represent all that is serious about any procedure. For example, nobody ever told me there was a chance that my previous transplants would turn me into a doubting nervous wreck. 

Prior to Monday’s appointment I was told that the recovery period of an allograft is not like that of the autograft. It is unpredictable and long, and I am likely to find this frustrating.  I was told that I will want some Graft vs Host Disease, but not a lot, and I have my fingers crossed for the rash and minor oesophageal problems type of disease, to be treated by steroids and other fun drugs. I hope the latter will bring some weight loss, but that might be negated by the steroids. I digress. After my last trip to St Bart’s, I had also asked Mamma Jones to find out what the chance of me dying from the procedure is. I wanted to know prior to today, so that I did not breakdown in tears in clear evidence that I am lying when I say that I do not care about facts and figures. Previously, I had been told that a full allograft for myeloma has a 40% mortality rate, which I think you’ll agree is rather high. Mamma Jones was told that my impending procedure has a 5% mortality rate, which is much more palatable. 

So that is what I knew from the various conversations I have had about Transplant Number 2. How was it sitting down and having somebody tell me in one go?  Exactly how I imagined.

I had to sign two different forms, one of them twice. The form I signed twice was not on carbon paper, which was disappointing because it is a material that really is a feat in engineering. Alas, I am left with a mere photocopy. 

In medical speak, I am having an Allogeneic Haematopoietic Stem Cell transplant, it says so on the first page. My donor, aka Big Sister is a 10/10 match (score!). In case you wondered, you can have a transplant at a 8/10 match. 

The aim of the procedure? Curative hopefully, but realistically, when one considers the philosophical meaning of ‘curative’, the aim can also be considered palliative. The key part, and one that I knew already, is that nobody knows which camp I am going to fall into. Right now, I am part hope, part realistic and part, I have no got a clue how I will manage my post Allo life.

The process of consent was very much a tick box exercise. Literally a tick box exercise. We, the Medically Trained Person and I, ticked the following boxes to show that I understood the possible short and long term effects. They looked like this:

SHORT TERM
β€’ Nausea and vomiting

β€’ Diarrhoea

β€’ Mucositis 

β€’ Fatigue

β€’ Alopecia

β€’ Immunosuppression

β€’ Infection and Sepsis (particularly viral infection, differing from the concerns during an Auto)

β€’ ITU admission

β€’ Bleeding

β€’ Transfusions

β€’ Pulmonary dysfunction

β€’ Haemorrhagic cystitis

β€’ Veno-occlusive disease

β€’ Nutrition

β€’ Further treatments (DLI, Chemo, HSCT)
β€’ Graft versus host disease in the form of acute skin, liver that may become chronic with affect on lifestyle 
To treat the above with steroids, I may encounter;

β€’ Diabetes

β€’ Myopathy

β€’ Osteoporosis 

β€’ Avascular necrosis 
LATE EFFECTS 
β€’ Infertility (N/A)

β€’ Male impotence (N/A)

β€’ Menopause (N/A)

β€’ Thyroid dysfunction

β€’ Cataracts

β€’ Lung fibrosis

β€’ Psychological difficulties

β€’ Secondary malignancies (aka secondary cancer)

Do not be alarmed. That’s what I tell myself. Do not be alarmed. It’s just the sort of list one will find inside a packet of Paracetamol, the difference being, having a allogeneic stem cell transplant happens less frequently then taking a paracetamol. I do not know about you, but I chow down one of those bad boys at least four times a day. An allogeneic transplant on the otherhand? Once in my lifetime (maybe).

In other words, this is just a list of everything that could happen. Let us put our hands together and say they won’t all happen. Even if some of them do happen, I have been assured that fixing cataracts is next to nothing when one considers what I have already been through.

After all this, all I know for certain is that I will be taking a lot of drugs for a while to manage whatever side effects I get as well as taking medication to help Big Sister’s cells do their thing. If they do not do their thing, I can have a top up. I did not delve any further into what would warrant this nor what it would entail.

Thus far, I have given you no figures, no percentages. I was given those and I’ll pass them on to you, but on the advice I was given on Monday, I urge you to throw them away again. Both good and bad. For if I end up being in the unlucky 70% or 5% or 50%, knowing the statistics of others, will do nothing to benefit nor influence my outcome. Get it? Good. 

β€’ Graft failure <10%

β€’ Cure rate 30-40%

β€’ Acute GvHD 50-60%

β€’ Transplant related mortality (immediate) <5%

β€’ Risk of relapse 50%

β€’ Chronic GvHD 50-60%

That’s it. That’s everything I was told, condensed into a blog and a four page consent form, psychological difficulties and all. Now, all I have to do is get it done. And then wait and wonder and learn. There is a great deal of learning to come. 

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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Day Zero

My Day 0 happened two days ago. Personal experience tells me that when one’s days are measured by pluses and minuses, it is very easy to lose track of time. That’s the reason why I am two days late in telling you what my second stem cell transplant was like, I genuinely have no idea what day it is. Well, I know it is Day + 2, but I only know that because I have just returned from my daily observations. 

Back to Thursday, which was two days ago (it helps for me to repeat things because my brain function is so limited, making my next few blogs, I fear, nothing but factual). As the Medically Trained People require a full 24 hours between the Megatron going in and the stem cells, my transplant was not scheduled in until 16:30hrs. Given the late kick off time, Mamma Jones and I went to a morning screening of a Disney film in Leicester Square. It really was a perfect way to waste time and escape the road they call Tottenham Court. Cinema is a form of escapism after all. I could only escape for so long, and I was soon back to reality. 

My reality was lying on a bed with a PICC line in my left arm and cannula in my right, whilst I thought of nothing but the pain to come. All the magical wonder I experienced during my first transplant, the big cylinders on wheels storing frozen  stem cells, which then need to be thawed to 37 degrees Celsius, had gone. Even the big blue gloves the Medically Trained People have to wear to handle the frozen cells failed to get me excited. 

Fortunately, fate decided to play a little game on me and my pals, so that I could feel something beyond apathy towards the actual transplant. All 90 minutes of it. 

Fate, gave me 10 minutes of irrational panic.

For, after the Doctor had done his final check and the go ahead was given, and the nurse put on the big blue glove and leaned into the big cylinder on wheels, what did they find? Nothing. They found absolutely nothing. Another Medically Trained Person attended and placed the big blue glove on her hand and do you know what she found? Absolutely nothing.

The stem cells were not there… Now, apparently this had never happened before. The scenerios running through my head about what had happened to my stem cells were pretty imaginative, but not as imaginative as Mamma Jones’ who had three scenerios (not one involved them just forgetting to put the cells in the frozen container). My favourite of hers was that the hospital had accidentially given somebody an allograft using my tainted cells. In comparison, I temporarily thought they had lost my cells, making my medical plan was a  waste of time and thus ruining all hope of recovery. I hid these thoughts well.

After a few minutes of pure imagination, a man appeared at the door, apologised and explained that my cells were still in the freezer. That was it. We all breathed a sigh of relief and I thought to myself, well, that was different from last time. You will find that my thoughts of late really are not that exciting. 

Mamma Jones then, in celebration and relief, nipped out to get me a drink. 

And so, everything was finally ready, the first of three bags was hooked up, I had confirmed my name and DOB and Mamma Jones appeared at my door with something that resembled a milkshake from Starbucks. I had a sip of the drink and I did not like it. Almost immediately after that, my throat began to tickle and then it began to swell… I thought about not mentioning it, but what if the throat were to swell even more? So I mentioned it and the Medically Trained Person said it was probably because of the ‘preservative’. 

There I was, ready to sue Starbucks, until I realised that it was not the extra special ‘raspberry’ flavour that had given me the extremely tickiliy throat. The cause was whatever scientific juice they had used to preserve my stem cells. I thought to myself, well, that was different from last time. It took Mamma Jones a little longer to realise that my allergic reaction was stem cell and not Starbucks based. The Medically Trained Person overseeing my transplant, had decided by the third bag that I was in need of some antihistamine, and I can confirm with you, that I was indeed. I had never experienced an allergic reaction like it. I felt like I was in in a movie. An anticlimactic movie.

Once I had been given the antihistamine intravenously, I can confirm that I was no good for anybody, not even myself. Words became a muddle and sleep became my target. By 18:45hrs, the transplant was done and the only place I was heading was to bed. For 14 hours. 

And that was that. In just 90 minutes my transplant done… There was no pomp and no circumstances. Apart from the mentioned mishaps, it all, looking back, sounds so simple. Three bags of cells and the deed has been done… 

If only that were true. 

If only that were true.

EJB x


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Best Laid Plans

When I eventually wake up today, the first thought I am going to have, after the one we all have first thing in the morning about emptying our bladders, will be ’16 days’. I know I will have this thought because I have had the same sort of numerically decreasing thought every other morning for the fortnight. It’s a countdown.  All being well, it is going to continue to decrease until I get to ‘zero’ and then I will find myself at what I have just decided will be called ‘Lift Off’.

I have been with this once,  silent countdown since 2 March and I have known of the less time bound specific transplant plans for slightly longer that that, but in the age of uncertainty and limited brain capacity, I have been quite loathe to write them down and explain it all. Since I only have a measly 16 days left to wait now, 16 days in which I imagine that my emotions are going to be here, there, under the stair and quite possibly anywhere else I can imagine, I thought it is high time for me to share this information with you.  The information of course, is also commonly known as a ‘Plan’. The Best Laid Plan. A lot can happen in 16 days. Coughs and sneezes spread diseases and all that, so, do understand my disclaimer. 

It has been quite a while since I did my MS Project training and I wager that I am in a minority of the population who have undertaken MS Project training, so my plan will only be presented to you in the form of words and potentially, the odd bullet point. Anyway, WordPress is not Microsoft Office, so I should just continue.

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I am having two transplants, you could say that they are going to be ‘back to back’, but that would depend on your definition of ‘back to back’ now wouldn’t it? Since my visit to St Bart’s on 11 February, during which I was bombarded with so much donor transplant related information that I had to take a 10 hour nap, I have slowly been trying to get my head around the implications of their plans for me. For your information, based on my discussions with the Medically Trained People, ‘back to back’ means a three or four month gap between transplants. Subject to the outcome of the first transplant. 

A month since my appointment at St Bart’s Hospital and I am none the wiser about whether what I was told was expected by me or not. I was told that I was going to suffer from severe fatigue post donor transplant for an undisclosed, but probably a long, period of time. I was also told that they will want me to have a little of something called ‘Graft vs Host Disease’, but not a lot of it, because if I get too much of it, the result could be worse than My Myeloma itself. Read from that sentence what you wish, but I have a full bottle of water next to me, so I am hopeful. To cut a long story short in terms of the graft and my host, they want me to get some rashes. Sexy. 

There are three possible outcomes to the procedure (they negated to mention a negative fourth outcome and so I will do the same). The first outcomeis a quick relapse, the second is a long period of remission and the third is a cure. They do not know which door I will get, and my, my, my, is that like, The Most Exciting Game Ever.

Prior to the appointment, I knew all of this information. That said, there is quite a difference between knowing it by piecing information together from various conversations and leaflets in isolation, to one Medically Trained Person confirm it all to my rash free face. 

What I did not know and what came as surprise to me way back on 11 February, is that I will not behaving a full allogeneic transplant. I will be receiving Big Sister’s stem cells in all their maroon coloured glory, but I will do so without any high doses of chemotherapy and radiotherapy. I will in fact be having what the Medically Trained People at St Bart’s call, ‘a Mini-Allo’.

There is a 50:50 chance that the mini-Allo procedure could be administered to me as an outpatient. News I welcomed with pleasure and a mental image of my television screen. On the downside, I feared this news might confuse my people over the severity of and longevity resulting from the procedure I will be having. I was told that whilst doing it this way removes some of the immediate risk that comes with high dose treatment and a severe lack of neutrophils, everything I will face in recovery is the same as if I were to have had a ‘full’ transplant.

Enough of that. That is my main course, which I will apparently be hungry for at the end of June or beginning of July. Plenty of time in my future to go through the minutiae. Plenty of time. For now,  I have my starter to contend with, which is provisionally booked in for the 1 April. Saying I am concerned about my next transplant would be an understatement. Unlike my previous autograpt, and to extend this  metaphor, I have been continuously snacking for these last eight months on various forms of chemotherapy, and so, I am not particularly hungry for more right now. I fear the overindulgence my adversely impact the proposed high dose course of Melphalan on that Wednesday, 16 days away.

As with July 2013, I have been told that I will be in hospital between 3-4 weeks.   I will be at the place where everybody knows my name, UCH and I will initially be staying in the hotel again, within the confines of Tottenham Court Road, until I become too unwell at which point I will return to quarantine in the Tower. Unlike in July 2013, I have been told that I cannot come in with painted toenails as the MTP may need to look at them. They did not need to look at them last time, and if memory serves I was sporting a hot red near my bunions, by I best not complain… I have other, more important things to plan for.

Having had a transplant already is a doubled edges sword. It’s both a blessing and a curse and for the life of me, I cannot decide if I am better off knowing what to expect or not… Let me tell you something for nothing, it does not make me any less scared nor emotional about doing it. 

Depending on the outcome of some tests I have tomorrow, in 16 days time I know that I am going to start a course of treatment that is going to have me clasping my stomach in pain, a pain that will last for well over a week and unrelenting.  At the same time, I am more than likely to once again, as an adult go through the embarrassment of soiling myself.  My mouth is going to become so dry due to a lack of fluids that I will have at least a week long film in and around my mouth, with cracked lips and a dagger for a swallow. My hair, my beautiful hair will once again fallout. I am going to need a lot of sleep. I will then get discharged from hospital and become reacquainted with solids and fresh air. And all the while, I will be the only person I know going through it…  Then, just about when I am starting to feel better, the main course will start  and that is something I have not tasted before. In 16 days time I will commence a course of action that leads to a plethora of unknowns.

I have purposely arranged this month, my time now, where I have a reasonable handle on my limitations, so that I can enjoy myself as much as my body will allow. It’s a crucial part of my plan. Fun is a tonic, as is completing things on lists. I suppose that, however, is another story. 

When I officially wake up today and say to myself ’16 Days’, I am telling myself that I have 16 days of freedom left before I become, well, before I become, I do not know what. I am telling myself that I have 16 days of normal left, 16 days to find the strength to get through the x number of days that will come after it, as well as the strength to manage all the other unknowns I, my family  and my friends are going to encounter.  

A Best Laid Plan

  • 11-31 March – Drug free. Attempt fun. Avoid snot.
  • 1 April – Day -1. Temporarily relocate to Tottenham Court Road, stayin in the hotel. Recieve Melphalan.
  • 2 April – Day 0. Recieve stem cells transplant. Spend the next few days waiting to get sick.
  • A Few Days Later – Be very unwell and spend several days shut in a room with little to no privacy. Await the happy news that I can be discharged.
  • Two to Three Weeks Later – Get discharged. Allow Mamma Jones to look after me until I am strong enough to put things in the microwave, which would mean I will be at the point where I am able to eat again.
  • Sometime in May – return to London Town to do some more recovering and more sleeping.
  • June/July – have the next transplant.
  • August, Autumn and December – recover. Avoid germs. Perfect drug cocktail. See signs of weight loss and hair growth. Attempt to keep personality intact, 

So there it is, the big plan. A plan that is probably as clear as it will ever be. A plan that I know all too well from past experience, is subject to change. I hope it does not change, for the simply fact that I am ready to move on now, or at least I will be in 16 days time. 

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I will leave you with one final musing. Getting over my last transplant, the months of recovery after it was the hardest thing and I mean the sort of difficulty that is weighted in isolation, lonliness, endless broken sleep and fuzziest of fuzzy brains, hardest thing I have ever done. I am not the same person because of what I experienced in  aftermath of that transplant. And the memory of these consequences is usually my second thought after I wake up and recommence the countdown.

EJB x

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Something Old and Something New

And now to interrupt your regularly scheduled programming to bring you breaking news. Not breaking news exactly, but news of a hospital new. Not a new hospital built in the 20th century exactly, but a hospital that is new to me.* According to my friends at Wikipedia, the hospital in question was founded in 1123. For the reason I was there, thank goodness technology has progressed since then.

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Exhibit A: A building not built on 1123.

Yesterday was Wednesday 11 February and yesterday I have travelled Eastward to the place they call the City, just a stone’s throw away from the place where a lady once fed some birds, to the hospital called St. Bartholomew’s. If you are not familiar with the place, Benedict Cumberbatch seemingly jumped off the hospital’s roof in 2012.

I have been referred to St Bart’s (we’re on a first name basis now), ahead of my proposed allograft transplant. I have known for sometime now that an allograft at the place where everybody knows my name was not going to happen. I had hoped I could get transplant number 1 out of the way before I was sent to meet a new team of Medically Trained People. I like to compartmentalise, but having had to wait for two hours packed tight in a tin of elderly sardines yesterday morning, it is probably beneficial that I got it out of the way, whilst I still have hair to have pulled out in frustration.

I heart the NHS and I understand the why patients need to wait. In the cancer business, my previous sentence is called a disclaimer because I am about to bad mouth the NHS. Not all of the NHS exactly, but specifically the St Bart’s waiting areas and their waiting times. I must be rather spoilt at the Macmillan Cancer Centre, because I found two hours of the waiting too, too much as evidenced by Exhibit B.

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Exhibit B: A chair with no view

You cannot see because Mamma Jones failed to photograph what she was asked to photograph, but there were not enough seats for the amount of humans on the floor. Nor was there sufficient room for people with walking sticks to safely navigate their way around the chairs. Nor were the seats sufficiently space apart to allow any form of privacy. My biggest bugbear? Very comfortable chairs. I believe at one point I described the waiting area on the first floor of the West Wing as ‘oppressive’. I am allowed to make sweeping statements like that because I have a really bad type of cancer.

Despite my first impressions of the hospital being damaged by the aged crowds and the customary, bright coloured walls designed to bring much cheer to those affected with cancer (exhibit C), the Medically Trained People were exactly how I like my Medically Trained People to be. The people redeemed the space.

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Exhibit C

The main doctor, Mamma Jones and I spent a good hour with, was informative and spoke to me in my sort of language. I almost understood what is going to happen to me. The head of the clinic, who popped his head round the door greeted me with ‘are you who I think you are?’… Well, personally, I just love that sort of notoriety. He had me at ‘you’.

Once that appointment was complete, I was sent across to another building, in the maze that is the hospital. The building had a meagre seven floors to UCH’s 17, but that did not prevent it from having a nice view when I was finally taken through to a treatment room. I say finally, for I had to part take in a little bit more waiting in another busy and cramped waiting area. In the small treatment room, I met another Medically Trained Person who have me reading material and in return, I gave her a cup of my pee. I then went on to give somebody else six vials of my blood on the ground floor. I failed to win the phlebotomist over in our five minutes with my wit. Unfortunate.

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Exhibit D – A Room With A View

All in, my trip to the City took six hours of my life away. I will say that the two hours of medical interaction was worth all the sitting staring into space and listening to other people complain. I’m allowed to complain, but anybody else who does so is just ungrateful… Anyway, in conclusion at some point in my future St Bart’s is going to be my hospital for around 100 days. Let’s say approximately 114 days based on the collection of papers resting in my hallway. I’m going to have to get used to the waiting and I’m going to have to get used to the seats, because I have a sneaky suspicion the Medically Trained People I saw know what they were talking about.

EJB x

* Apart from the time I went to the sexual health clinic because I thought that that was a thing grown ups should do.

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