Tag Archives: Auto

Bon Anniversaire

Today marks three years since Myeloma officially came into my life. It’s three years since that junior doctor cried as she sat at the foot of my bed whilst she broke the bad news to my family and me. Is it an anniversary worth celebrating? No. It is however a significant milestone in my life and one which marked for better and mostly worse, a permanent change in the life of Miss Emma Jane Jones. Put it another way, the 17 August 2012 was life changing. And it wasn’t only life changing for me.

Since that date, I have been given a whole set of new dates to remember, celebrate and dwell. My first transplant on the 17 July 2013 for example, but that failed, so it was not quite the rebirth I advocated at the time. Then there was my second auto on 1 April 2015 and then my Allo on 23 July 2015. Only time will tell if the latter dates are ones worthy of celebration or just dates of mild significance. Mind you, the date my DNA changed will always be fairly significant won’t it?

For me though, this anniversary is the Big One. It’s the one that started everything off and although I wasn’t given the formal diagnosis until three days later, the 17 August will always be the day I got myeloma. The day I got myeloma. A ridiculous notion really, because my vertebrae did not fracture on that date, and the paraprotein did not suddenly appear in my blood on the 17 August three years ago. It is the date I knew why these things were changing in my body. It is much like my birthday, except with far more adolescent longing. On this date, I can feel melancholy and I can feel slightly sorry for myself than usual. I can, if that way inclined, try and recall the best and the worst of my three years, the highs and lows of each of 1095 days, I have fought through. And it is a fight, people may be trying to soften the vocabulary, but for me, I see this as a fight, a really, really big one.

Of course, you can see and feel the date differently, which I occasionally do. For as sad as my diagnosis was and as much as I do not want to have myeloma, the 17 August is also the anniversary of me growing up. My Myeloma has forced me to do many things I have not wished to do and experience,  but it also forced me to become an adult. Not the adult I once envisaged with a mortgage, children and a shed; the sort I am jealous of now. I am an adult who is forced to sponge of the State and her parents, but I became an adult nevertheless. I look at my contemporaries and sometimes I think to myself, ‘how would you have managed it?’ It’s a question without an answer, and it is a question I would not wish upon anybody ever having to find the answer to. I do not like myself for thinking it, but even when I think about that question in relation to me, I question how I have managed it all, and I am proud of myself. Even at the moment, when I seem to question daily my strength to continue with my allo treatment, I am proud of myself for coping. I think us myeloma sufferers deserve far more kudos for merely coping. I bet you any amount of money, because I do not have any money to make any sort of meaningful bet, that three years ago, I would have thrown anybody out of my cubicle if they dared to say that the 17 August would be a date that I would eventually be proud of. 

Even though my pride only accounts for some of my feeling towards this day. My diagnosis was the making of me. 

It was indeed a Big Day. 

I could do what I have done in previous years and list all the treatment I have endured in such a short amount of time. I could go through the physical side effects I have experienced many times over and have been forced to become accustomed to. I could even talk about how long I statistically have left in this world,  but I will not be doing any of that today.  This year feels different to me. Maybe it is because I am no longer at UCH and things seem temporary at St Bart’s. Though, really My Myeloma feels more than just the facts and the figures. Since my last anniversary, I feel like so much has changed; I do not know if it is a tangible change or just a non-drug related feeling in my gut.

Perhaps, prior to this last year, when I embarked on a nine month treatment programme followed by two SCT, I believed nothing had really permanently changed. I mean, I knew things had changed, but there was a part of me that still believed that my life could at some point at an unknown time and date, just slot back until place. I know that will not happen now. My 13 months of near constant treatment shown me that.

Until this last year, I also believed that I had a well established Support Network in place. I believed that all the perceived letting down I had experienced in that first year, was the only letting down I was going to experience in My Myeloma journey. My relapse last June corrected that misunderstanding. I feel far more let down post relapse than during any other time during my illness. Make a leaflet about that Myeloma UK, some people, those without myeloma, just cannot handle the fact that myeloma is a cancer that is chronic. That it goes on forever.

It is a strange thing to say, when I feel so well supported and loved now, but I have had to grieve the fact that some people got bored of my cancer and thus they got bored of me. It felt like they had tasted and enjoyed the 11 months of freedom remission had given me, and thought that taking it all on again with another relapse was too difficult a task to take. My stock went down. There were some people who made promises of support and friendship, not always actual promises you understand, but their presence alone throughout the early days of my illness, made me naïve enough to believe there was  something special and enduring in place. A promise of friendship. All I would say of this to anybody else in the same position as me, is, be warned of the glory seeker. When I am stuck in no man’s land, where there is no guaranteed end in sight, and the cancer keeps coming back along with my unpredictable fatigue, and those around me are moving on because they can, people and their promises can disappear. I have seen many of those promises, accompanied by those friendships end up on the proverbial scrap heap. 

It’s made for a difficult year and one where I have had to learn to stand on my own two feet. Fortunately, there is a flip side to this and if my relapse had taught me anything, it was who I could trust to stand side by side with me, as my treatment and their lives continue to develop. It does not always have to be either or, even though I am still prone to bouts of paranoia on this subject. Let’s not kid ourselves, I’m only physically well rounded. 

My relapse showed me that early on in my treatment, I made mistakes. I criticised my friends’ behaviour, in some cases I did so publicly and I regret that now. They were struggling like I was and they showed their struggle differently to how how presented mine. In the last few months, I have seen so much evidence of the support I have during my transplants, that I feel confident that even on my lowest days, I’ll have at least one person willing to pull me through the darkness. We just need to work on how I let people know. 

As it currently all stands, I know that My Support Network is well founded and passionate. It is mine, it is invaluable and I know that it is built on trust, even though I do not get to see its members as much as I would like to and I am pretty certain that is a feeling that works both ways. Rather strangely, or should that be tellingly, My Support Network is made up of people I have known for years either because they are related to me (obviously) or because they have had the good fortune of being my friend long before I knew what myeloma was. It has taken a while and the occasional misunderstanding, but I know who will be there when I need them. Some people will need to be asked for help and others won’t, but that is just the way things have always been and thus, it is the way things should be. I just wish there was more I could personally do to make my friendships equal again. Homemade cards only get me so far. 

Anyway, on the subject of my Support Network, I am making myself blush and as you are not all on anti sickness pills like me, I will put an end to the subject soon, I promise.  I could have just said what I am about to say five paragraphs ago;  My Support Network is irreplaceable. It may be irreplaceable, but crucially, my personal strength and journey through My Myeloma should not be defined and determined by it, and post relapse, when the droppings happened liked flies, I had to accept this the hard way and quickly.

My ability to cope with myeloma, is a much broader achievement than my Support Network. I personally, will always feel isolated by my illness and I have spent three years learning how to cope with this. I do not have all the answers, but I have more than I did last year, so who knows what I will be saying next year? And the year after that? And the year after that? 

Last night, as I was trying to drift off to sleep, I began to worry that with three years of near-constant treatment, there was a possibility  that soon, I might not have the strength to continue fighting should my current treatment fail. My current treatment, which I am nearly halfway though, is not exactly a walk in the park and trust me when I say, I have many a down day. I am fully aware that I will have more down days over the next x days. I will fail to get out of bed a few more times, find myself physically unrecognisable and cry over missing events with my  friends. I worried so much about my occasional thoughts of giving up, that I envisaged quite a different blog to the one you are currently reading. 

I haven’t only experienced treatment, relapse and drugs in my third year of myeloma. In the last year, somebody dear to me lost his fight against myeloma. He became dearer to me, selfishly, with my own diagnosis three years ago. He was somebody who I never saw being remotely negative about the bastard that is myeloma apart from rebranding Velcade, “Cillit Bang”.  I fear negativity is my default position the minute the going gets remotely tough. His eldest daughter also gave me an invaluable crash course in myeloma and continues to offer me considerable patience. Her Dad did not have a sibling donor and thus could not have an Allo SCT, instead  he had two auto SCTs and several other treatments such is the norm for current myeloma treatment on the NHS. He was given velcade and among many of the things, he suffered from steroid insomnia. He did not know it, but he was My Myeloma rock, and the only other person with myeloma I needed to know. My current treatment is the first treatment I have had that he did not have in some incarnation or another. I remind myself that I  feel poorly because I am lucky enough to have a sibling donor, and last week when I couldn’t get out of bed, I thought about him and his family, (and not because I had just watched The Man With The Golden Gun remembering a holiday we had) and I got out of bed. That’s all I really want to say about that. 

Three years after my diagnosis, in the middle of a transplant where I had to sign to say I was aware of all the risks that could happen during it, I am ever aware of my life and the chance of my death. I am also ever aware of the chance of my death being further away than the statistics that I will not talk about, and current literature would suggest. 

It’s been three years of changing and developing treatments and a changing and developing me. I don’t know how to end my acknowledgement of my anniversary, so I am just going to say goodbye and thank you for reading my blogs. I promise they will continue.

EJB x 

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Catch & Release

It has been seven whole days since I was told that I could go home and indeed, went home, leaving my week stay at St Bart’s but a distant memory. The latter part of that sentence is total bollocks by the way, the schedule of an allogeneic SCT, even if it is just a mini one like mine, makes it next to impossible to pretend that the hospital is just a misty water coloured memory in the corner of my mind. In the seven days I have been home, I have been to St Bart’s twice and in touch with them via phone or email on three other occasions. Essentially, I have been in touch with said hospital every working day since I left it. 

My bloods might be going in the right direction and the medically Trained People are making all the right noises, but did I leave there too soon? How the heck should I know? I spent all of Monday in hospital being tested for bugs and slugs in isolation, because they was a question over my current health.

If you were to speak to me or see me over the last week, you would probably conclude that I did leave too soon.  On Monday, a Medically Trained Person was asking me complex questions like “what was the date of your transplant?” and “what did you do before all of this?”, and I felt like I was taking my French oral GCSE without revision. All I could do was apologise that I could not speak normally. Essentially, you are looking at slow, occasionally drawling slur.

I have had two stem cell transplants before this, they were autos, meaning the cells were my own and the recovery was hard, especially after the first one. All so very hard. Upon discharge after both transplants, I got into a car and went straight back to Mamma Jones’ to be looked after until I felt like I could take a stab at doing it myself. My current treatment regime does not allow for that sort of leisure. It barely allows for sufficient rest.

Upon leaving last Wednesday, I was told that I needed to return on Friday or Saturday and then again on Monday for a Doctor’s appointment, leaving little time to make the four and a half hour round trip journey back to the Fens. And so, I decided that I would stay in my flat, with Housemate to help me until after the appointment on the Monday. There are many things one could say about this decision, but for today at least, as I continue to struggle to find my words, let’s just say it was decision most ‘foolish’. 

I am incapable of looking after myself. I imagine that is a fairly difficult statement for any 32 year old to say, accept I am 31 (the proofread) so I will say it again because I know it is hard for me to say; I am incapable of looking after myself. I am also incapable of planning anything, following a plot of any kind, having a prolonged sleep without experiencing a nightmare and not missing my friends.

I knew these facts last Friday, when with my bags still packed from the hospital sitting in my hallway , I phoned Manma Jones crying because my hair had started to fall out and I needed an hour’s lie down post shower, pre dressing in order to make myself presentable for blood tests. An hour after that I spoke to Big Sister and three hours after that she was at my front door ready to drive me back to the house of Mum Love. That night,  100 miles later, my mother needed to help me into my pyjamas. I then spent almost 23 hours of the next day sleeping. I did something quite similar yesterday, although yesterday, I only ate when food was presented to me at 18:10hrs. The previous day, after nine hours in the hospital, I realised that I had forgotten to eat anything at all. 

In hindsight, thinking that I could look after myself straight after receiving seven days of round the clock care, was just bonkers. Of course I have a Support Network in London led by Housemate and Bruce, but one of them is not anatomically capable of putting me in my pyjamas and the other one would be mentally scarred by the concept. Essentially, London assistance isn’t the same as the one I get with Mummy. The people of London have no reason to stand by me when I scream and shout and let it all out, and if I were being perfectly  honest, I will always try my hardest to avoid too many people seeing me at such a low ebb. A location I have been flirting considerably with this last week. 

I am trying not to overthink the situation because I know there is no turning back now and I also know how fortunate I am to be in this position in the first place. I just wonder that if I am finding this transition so difficult now, how the devil am I going to manage when the real thing gets started in a few weeks time? That’s rhetorical.

Some of you may be fortunate enough to have never been an inpatient in a hospital, so let me tell you that whilst in hospital one has little to no privacy even with the privilege of a private room. The NHS, the wonderful and flawed NHS, pays people to create and deliver a care plan, cook and carry  three questionable meals a day, waters you, takes your blood, check your pulse, breathing and blood pressure, prescribe and deliver the correct drugs at the right time and ensures said drugs are swallowed, they change your bedding and clean your room daily and these are just the people you see. Those tubes of bloods and tubs of my urine had to go somewhere, to somebody to check and the results put on to a computer, even if I wish these tests were done with greater haste. My point is, when one is an inpatient, all they have to do is try not to get too irritated by the lack of privacy. Everything else, even if it is not done to a quality one is quite used to, is done for you. One Sunday, for example, the threshold to my room was crossed 47 times in a 24 hour period; 45 times by Medically Employed People and twice by members of my Suppork Network. I do not know for what reason I documented this, but I believe it validates my next point.

  
The minute I walked out of the East Wing last Wednesday afternoon, all the responsibility for doing all of those listed above bar the things done by those unseen technicians handling my bodily fluids,  fell back on to me. It fell on to a me who continues to be nowhere near capable of doing such things alone. I can barely remember to drink, let alone to prepare the food I do not have the energy to eat, and remember to take the 20 odd pills I am prescribed each day at the correct intervals. And then there is cleaning, I attempted to lint roll my pillows today to remove evidence of my shedding hair and Inhad to do it in four separate sessions.

I went into my treatment with my eyes wide open. I knew it was going to be difficult, but I did not think that I would be doubting my ability to see it through so early on. A friend said to me earlier that I had rhino skin, which I sincerely hope is true for no other reason than all this treatment is actually going to make my skin thinner. Not just metaphorically thinner, but old-lady-be-careful-with-the-plaster-thinner. 

I think I just need a few weeks in bed to rebuild, but that is not afforded to me. 

My transfer to St Bart’s seems to symbolise much more than a change in venue for my treatment; everything seems different and all of it seems out of my control. Even though I may allow myself the occasional daydream that this time next year ‘I could be normal’, I am also a realist. I know that what is still to come is going to be so blooming difficult and I’m struggling to see where I am going to find the strength from to achieve my goals. My treatment feels relentless. This is relentless.

Prior to my discharge last Wednesday, I was asked to read an 79 page leaflet from Anthony Nolan called ‘The Seven Steps: The Next Steps’. I knew the contents of it, but I do not know if on the day I was getting to go home after spending a week in a drug fuelled neutropenic haze, I needed to read “it is important to remember that although you are being sent home from hospital, and an important phase of the transplant process is complete, it will be many months before you are fully recovered”. Define ‘many’.

The treatment is intense and I have not had find time to catch my breath. Reading that leaflet seemed to have cast a spell over my whole week. I do not normally feel so negative. That leaflet basically said, don’t relax yet, for the worst is yet to come. 

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 Touché Éclat, 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? 

💅🏼💋💄

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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Limbo

Today my months of limbo, a limbo that started on the day I was diagnosed, will come to an end. Sort of.

Since the early days of PADIMAC, I have longed for the day when I am told that I can get back to some sort of normality. Unfortunately, that ‘new normal’, the one I imagined and hoped for for so long does not exist and it took until the months after my transplant to realise that.

If all goes well today, I will be told that I will be given frequent Velcade injections and nothing more, and because of that, I will be able to return to work and I will be able to go on holiday and I will be able to live some sort of life that is not completely dominated by My Myeloma. If all goes wrong, I will be starting another course of treatment. The outcome does matter to me, more than last night’s insomnia can testify, it’s just the outcome I wanted and imagined, is not going to happen. Save for a medical miracle, it’s never going to happen. Today, I have to let that dream go. This volume does not close with a euphoric bang but with a tired whimper.

For so long I held onto the fact that I was living in a limbo, also referred to as twilight by some corners. Since my transplant, I have realised that I had romanticised it, and what I was in, was merely dusk. The truth is, my life with myeloma, as in really living with myeloma is going to be more akin with the last 14 months than it will be to 338 months before it. And this is a reality I have been dealing with via counselling (I recommend it buddies, if only for the self indulgence). If I was told today that I would not be on any drugs, I would still live a life that has to be built around or features a series of concessions, payoffs and missing out. I will still get tired and I will still be in pain. I will still panic if my bus terminates. I will still be able to snap my spine if I shake my hair back and front. I will still be under a cloud of uncertainty, even if it is a lighter shade of grey than the one I am under currently. And, crucially, I will still have myeloma.

Instead of getting back to the ‘new normal’ I fanaticised about, today marks a juncture, where I have to learn to really live with myeloma, with or without treatment, I have not done that yet. I have always aimed for something, had a target, and that target has always been getting through my first transplant, and the pages after that were and remain blank. For all those months, in all those conversations and in even more of my thoughts, I never realised that the challenge of all of this is living with it. Chemotherapy, needles, transplants… They are a challenge too, this marvellous blog has told you so, but they are also a distraction from a harsh reality that I have not yet had a chance to realise.

Obviously, the less drugs I am on, the less concessions I have to make in the life of a single, almost white, 29 year old female, and right now, less will be more for my tired body. That is my wish. I do not and cannot know what is coming around the corner. I flirt with being fine with this, and I am feeling better about it, but it is difficult. It’s difficult because I thought I had reached a summit until I realised there was not one.

I have no idea what is coming next. As a wise blonde haired woman has said more than once, I just have to take each day as it comes. I just really, really hope the actual tomorrow comes with a break.

EJB x

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0.01

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

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

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

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

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

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

EJB x

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The Little Princess

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

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

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

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

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

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

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

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

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

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

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

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

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

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

EJB x

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Whoopsie

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

Oh God, I just shat myself.

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Hot Box

Some time ago, whilst I was preparing myself for March’s transplant, I was informed, and it was informed, I am talking volunteered information here, that the Melphalan induced bowel problems, whilst horrible, were not considered to be ‘offensive’.

At the time, if memory serves, it was during my harvest, I asked for some clarification. By ‘offensive’, what was meant was that the Melphalan side effects do not come with an unpleasant smell. Great, I thought, I can defecate in front of my friends and they would be none the wiser.

Unfortunately, whilst my faeces has yet to turn to liquid, I am experiencing increased, erm, action, in this area, and I can confirm, in my windowless hotel room, all evidence, thus far, has been to the contrary.

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