Tag Archives: Allo

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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Like A Bullet From A Gun

WARNING – 💩THIS BLOG CONTAINS TALK OF FAECES. HARD, SOFT AND SHAPELESS FAECES.💩 SO DON’T READ ON IF YOU HAVE A WEAK DISPOSITION. IF YOU DO READ ON, BE THANKFUL I HAVE NOT MENTIONED MORE.*

One of the biggest challenges I am quickly trying to come to terms with is the change the transplant and it’s drugs are going to have and have already had on my toilet going activities. I have spent nearly three years complaining about the impact my previous treatments had upon my bowel. Nay, it is more than that, I had publicity reconciled myself to that fact that unless something was drastically wrong with my body like a course of radiotherapy through my stomach or a hefty dose of Melphalan, I had a life of overly formed, every other day excretion with constipation ahead of me. I understood that and I knew how to manage it. Maybe I had even come to like it. At least it was predictable. Ghostly. 👻

Since my release from hospital however, I have been forced to discuss the taboo that is poo, to avoid mass panic and hypochondria. My mass panic and hypochondria. I can feel my body changes and I am on high alert for it and this is outwardly, the biggest change thus far. Gone are the instantly satisfying rabbit pallets, and in with what I do not know what. I could not make my way through the consent or any of the transplant literature without coming across the word ‘diarrhoea’, so the sudden change is not unexpected. It’s just unwanted. And so are the new definitions. 

I could go deep into my concerns and summarise the many conversations I have had with the Medically Trained People about why investing in some nappy rash ointment is a good idea, but I think the conversation below sums up my current dilemma.

  
Such is the importance of stools in this post allo world, I have to inform the Medically Trained People if I have more than two sessions in a single day. Manners would usually dictate not discussing this with anybody else, let alone the out of hours hotline. 

On this subject of toilet, I am beyond cautious. You can tell nurses in particular are used to this sort of talk because my nurse on Monday compared the consistency and colour of her breakfast drink to what I need to be on high alert for, whilst she consumed it. Take that Weetabix. I welcomed the clarity. I have sample jars in my handbag, should there be a sudden need for analysis. I am not actually going anywhere requiring a handbag at the moment, so the fact the jars are still in my handbag are a testament to my current energy levels.

Earlier in the week, I came across the notion of ‘constipation overflow’. If you are interested, that is what I have by the way. Constipation overflow. There is no need for the nappy rash ointment just yet.

The sad truth is, despite my panic last week, I haven’t experienced diarrhoea yet. My friend would be correct with his definition of a ‘loose stool’. For me, this is just another unpleasant experience and it is one that realistically is only going to get worse. Another reason why I must remember my fluids!

The diarrhoea will come and come it will and when it does, I’ll put on my rose tinted spectacles and look in my medicine drawer at my Sainsbury’s own brand suppositories with yearning.

What a depressing thought. 

EJB x

* Humans do Number 1s too, and they are not immune from the allo side effects either. FYI

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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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Drooping

I have literally spent months, maybe even a year willing for something to change in my treatment, so that I had something interesting to blog about. I have a lot that keeps me awake at nights, but I still managed to squeeze in the worry that the monotony of daily cancer care would drive people away. Fast forward to my allograft and I have something new to say almost on the hour. Everything seems like it is new and I am in a state of flux. The problem? Nothing is keeping me awake at night. Very little is keeping me awake in the daytime. My treatment and this experience seems to be moving at such a rate that I do no have the time and I definitely do not have the energy to tell you about it all.

The headline is simple, I have had my transplant. Unlike the original plan, I had not one but two Day Zeros because Big Sister did not produce enough stem cells on the first day. I am far too tired to have body issues at present, which is for the best, because more than one Medically Trained Person told me that the reason for the two day transplant was my sister’s significantly smaller body size.

I just asked Mamma Jones to confirm how many cells I should have had over how many cells I actually had, and I felt like her answer lacked conviction. All you need to know is that I was only marginally short on Day Zero The First, and by close of play on Day Zero The Second, I had had more stem cells than originally intended. 

I now very much want to be a watched pot. I am being monitored so intently, that hopefully, my body will never have the chance to boil… I keep imagining that one day I will wake up and have enough energy to reply to my messages and blog about my experience to do date. If that day doesn’t come, let me tell you that this watching schedule is intense, with absolutely no room for respite. 

Going into this transplant, I was told that it was easy when compared to what I have already experienced over the last three years. I think the word ‘easy’, was a white lie. What I am doing, what I am having to do everyday without a day off is exhausting. Two years ago, I was stuck on a ward on UCH with green coming out every orifice; that was hard. Today, I do not have green coming out every orifice, but it is my 10th day of travelling into Bart’s for blood tests, forgoing rest and questioning the real purpose of showering. On Thursday, utterly dejected, I sat at the foot of Big Sister’s Harvest Bed and declared that I had never felt as ill as I did in that moment. 

If I could, I would sleep all day long. I just paused to see if I could have a few waking hours and truly the answer is no, I could sleep all day long. Yesterday, my neutrophils dropped to 0.6, so we are anticipating being told that I have to go into the hospital today. Exhaustion doesn’t cover what I feel. I am drained and I am fairly certain were it not for people putting food and drink in front of me, I would consume neither.

As for St Bart’s itself, I cannot be kind. There has been mistake after mistake, some I think are potentially serious. On average, I have been sitting in the patient bays for 5-8 hours a day and the fact that it is not only me feeling let down by the service is of some comfort. Individually, some of the Medically Trained People are lovely and I’d like to see Jeremy Hunt work the 10 day week plus on call one of my doctors just worked, but collectively, it’s disjointed. 

I keep reminding myself that I am a pragmatist and the only new age things I believe in are my Mindfulness Colouring In Books, for if I believed in more, I know I would get bogged down on how the ward has made me feel and to what detriment that has had to my overall treatment. It’s a blog in it’s own right, but when I questioned whether I would still be standing if St Bart’s had been my hospital from the start of my treatment, I think that really says something about my perception of their care. 

Now, Mamma Jones has to read this to see if it makes any sense and I am going to close my eyes to see if I can shake off this headache I have had for the last 48 hours. I am not allowed paracetamol anymore. Or suppositories, but that is another medical issue entirely. Bloody neutropenia.

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Allo Allo!

Hello there, before I get things going I think we should all stop and appreciate the pun that forms the title of this blog. I am saying ‘hello’ because I have been absent from my blog of late and I am saying ‘Allo’ because I am writing to tell you all about the allogenic transplant I am about to have. Get it? If you were not a fan of a 1980s sitcom, maybe you will not have understood it immediately, but as I have now explained it to you, a pause for you to guffaw is warranted. 

👏👏🏻👏🏽👏🏿

Right then, here it goes. 

Tomorrow, two years minus one day after my first stem cell transplant and 1063 days after I was diagnosed with the glory that is Multiple Myeloma, I will start treatment for my donor transplant. One could argue that I started treatment last July for this transplant, or, that all the other treatments I have had until this point have led to this transplant, but in the interest of not over exaggerating the sitution, tomorrow the SCT treatment really starts a proper.

It has taken an age to get here, and yet, once again, it all feels like it is coming at me too thick and too fast. I have spent the last few weeks wishing I had more time to enjoy myself post April’s auto, wishing I did not have to waste my limited time and energy sorting negative things out like money and my gas bill. I also feel under prepared in almost every sense possible. The impatient part of me however, which I should add, is My Ruler, just wants to get it out of the way. I have heard all the things that could happen and could go wrong, that I  just want to see what is going to happen and what is going to go wrong.  I want to be able to tell somebody if I’ll be free in a month’s time. I would really like to know how much energy I will have in October for the London Film Festival. I want to see if I really have wasted my last few weeks of freedom fretting over my future instead of seeing my friends and visiting my nearest multiplex. I want to see if I am strong and if I will be lucky enough to to experience weight loss. Most of all, I want to see if the transplant is going to work.

I really want it to work.

I will not know the answer to any of these questions until the treatment starts. It’s not only me who does not know, the Medically Trained People don’t know either. 

Last week, I was informed on two occasions that I am currently in remission. I didn’t believe it. On the second occasion, I was told that I was in complete remission and I was the healthiest I have been since all this started. It made the dire biopsy I had the previous week and discovering that I did not secure the lid on my 24 hour urine sample all worth it. It was news that once upon a time, would face me screaming from the roof tops. For now, it is news that bodes well going forward, only because I am exactly where the seven cycles of treatment and autograft intended me to be. It is exactly where I wanted to be. 

At the very least, it proves that my body is ready to fight the next fight, even if my mind is lagging behind. 

Some people may question the point of Transplant Number 2 when I have already achieved remission. If the last 1062 days have taught me anything, My Myeloma is a stubborn little bugger and any remission I have without the transplant will not last long. I remember June 2014 well. It’s a fact of my life. No transplant, no chance of freedom.

I’m backed into a corner with my treatment. My only true option is the transplant and I know this. Despite this, a question that has been plaguing me over the last few weeks, is that even if I do manage to get a long remission with Transplant Number 2, has the damage already been done? Myeloma came along and dropped a massive bomb into my life and there are times when I feel like I am frantically grabbing at the remaining pieces and failing to retrieve them. What sort of life will I awake to in 5-6 months time? An uncertain one. I have not been able to fully celebrate my current medical position because I have bogged myself down, with sleepless nights with these questions about my future. People tell me to focus on my health and worry about the later, well, later. That is easier said than done, especially when it is me who is staring into an abyss. Sure, my health is the most important thing, but what is health without the means to have a life? 

I know that I’ll think about the above more than once as I go forward, I may even take it out on others.  I also know that tomorrow when I wake up, my job is going to be getting through the transplant. My job is going to be getting myself out of bed everyday to get to the hospital for treatment. My job is going to be looking after my body, monitoring it and doing everything I can to ensure Big Sister’s cells do what we all want them to do.

I first heard of this procedure on 20 August 2012. At the time, I was told that there was a high chance of dying from it, there was a small chance that it would cure me and it was a rare procedure to undertake. I disregarded it. It scared me, it still does. I have had many a conversation about it since and all I know now is that I am ready to take the risk. I would be ready even if the risks were as high as first told. The prospect of being able to have a few years (conservative estimate) without treatment makes my mouth water. I’m blowing bubbles with my metaphorical saliva, I’m that ready for it. 

I have to face it, my life is not what it once was, but that is a fact that will not change by not having the transplant. In all probability, my life would be worse. Like I said, that damage has been done. Taking a risk with Transplant Number 2, the cost of doing, knowing how physically and mentally difficult it is going to be for me and those around me, has to be worth it. It has to be worth it. 

I’m in this for the long haul. 

So, tomorrow morning, I will go to St Bart’s where they will put a tube in my arm that will stay for much longer than I would like. I will have the first of five doses of chemotherapy and one week from today, I will have a bone marrow transplant. 

It’s the end of this blog, but, what it is the beginning of, time will only tell.

EJB x

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Something Borrowed

I am often being told that My Myeloma is not all my own. It would be correct to say that my illness is not all about me, the people around me have suffered effects of the illness just as I have; they’ve metaphorically and actually held my hand, they have lost a drinking mate, they put up with me and fained interest in me describing in minute detail what I have cooked on any given day, they have dealt with my mood swings and there are many, many more things that are too long to list here. 

Very soon (with my fingers crossed), somebody is going to be physically affected by My Myeloma. I will be borrowing something quite exceptional from my Big Sister. It’s beyond exceptional. It’s a minor miracle.  Just as this will be a new experience for me and a potential lifeline, it is a brand new experience for her. I’m not even sure if the word ‘experience’ encompasses the enormity of what she is about to do. I really isn’t just about me anymore…

Two weeks ago, Big Sister travelled to London for her pre transplant tests. From this, among other things, we learned that it is not only me who has to wait around a hospital.
And so, without further waffle, for one time only, I give you Big Sister:

I had known for 33 months that I was a match for my sister and that I carried round her magic medicine and possible cure. Just a few days after Emma’s diagnosis, my tissue was tested to see if I was a match. There was only a 25% chance that I would be, so we were all thrilled when it was confirmed I was a 10/10 match. I can still remember everything about the call from the hospital telling me this, and my phone call to Emma to tell her.

It’s been quite a responsibility carrying the stem cells around, if I had had my way they would have been taken as soon as we knew I was a match. I even carry around an ICE card in the event of an accident which states I am a living donor and they meant let me die until my stem cells have been harvested.

A few months ago, we were told I would need a medical before I donated. After months of asking, my medical for stem cell donation was arranged for the 11 June. I was anxious to say the least. What if, after all this time, Emma’s own stem cell transplants and our hopes, I couldn’t donate?
I caught the 7:21 train to London, sat in my reserved seat and tried to revise for my upcoming exams. Instead, all I could do was listen to the moron diagonally opposite me, try desperately hard to make conversation with the barrister next to him. Among the many conversation starters he came up with was ‘we all have cancer you know?’ I sat there wondering if I should say anything about his rather random and insensitive comment; in the end I figured my thoughts would be wasted as he was a proper know all. 
I hopped out the train and grabbed a taxi to St Barts. I was there a few minutes before my appointment. I was weighed and measured and then sent to see a consultant. The consultant was nice and cheery, he told me a load of things I already knew and completed a questionnaire about my health. I signed a consent form, the same one I give women at the hospital I am training at, before they have a caesarean, except this time ‘donate stem cells’ was written in the blank space.
Next, I went to meet my CNS, my very own CNS, how about that? She talked to me about dates, and we agreed that the harvest would start on the 22 July. I assumed this meant I had passed the medical, although no one said. My CNS then sent me for an ECG, and some blood tests.
I wandered round the huge hospital to where I was told I would get my ECG, only to be told the department had recently moved and I now needed to be at the other end of the hospital….so off I went. I was called in immediately, it took about 5 minutes to stick on all the sensor thingies and then just a minute to do the trace. I was handed the trace and told to take it back to the CNS. I was a bit reluctant to hand the ECG trace over before I knew it was ok, so I quickly Googled what a good trace looked like. Mine was similar, what a relief, so I handed it over.
Next it was time to take ‘some’ blood samples. Off I went, back to the main building and up to the 6th floor. I went and sat in a bay where other people were having chemo. A nurse came and started taking out the empty sample bottles. Now I am not going to lie, I hate needles, I always have and always will. Trying desperately hard not to embarrass myself in front of these poorly people that have to under go needles frequently, I let her take my blood…..all 16 bottles.

  
Finally, I was sent to the pharmacy to get my G-CSF injections. I waited over an hour, but they never appeared. It turns out that the prescription was wrong. As a result, I couldn’t meet Emma for lunch and Emma will now need to collect my injections for me at some point.

A week or so later, I had a text from my CNS to say all my blood tests were ok. The next day, I received a letter in the post from St Barts. My heart pounded a bit as I opened it, luckily it was a confirmation to my GP that I was suitable to donate, requesting they do check up on me following the harvest.

  
So after all that, and after 33 months, on the 18 July, I will start to inject myself with G-CSF, the growth hormone to make more stem cells. I’m not entirely sure how I will do this, but I will cross that bridge at the time. On the 21 July, I will go to St Barts for my pre-op tests. On the 22 July, I will have my stem cells harvested. They will be cleaned up and given straight to Emma. 
It all sounds quite simple. If simple means needles, stem cells and giving your little sister a lifeline. 

Can it really, finally, be happening?

EJB x




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Four Weeks

I have four weeks of freedom before I go into UCLH for my stem cell transplant. The provisional date is 27 March. I finally have a date. One day I may have a date with a man too. We can hold hands and ‘stuff’, but for now, the 27 March 2013 is the only date I am worried about.

I will make myself enjoy the next 23 days, but I don’t want to. I don’t want to have to wait.

Way back in December, I was told that this current waiting period between the harvest and transplant was 1-2 weeks, then, I was told it was going to be 2-3 weeks and now it is four. Well, 27 days from my harvest. I know that in the grand scheme of things, an extra week is not a long time, but it is a long time to me. Getting to this point has been one hard slog full of set backs. I want it to move forward faster than the timetable is allowing it to.

There was a point when I looked forward to some time off treatment, but not anymore. I have already had six weeks off. Six whole weeks of waiting for something to happen and I do not want another four. I do not see this time as a time for me to enjoy being ‘normal’. All the time off gives me is extra anticipation and longing for the time when I get a period of recovery, when nobody knows when My Myeloma is going to come back (the stats say two years tops). Not a four week break that I know is only four weeks. Four weeks of waiting is not freedom. It is not living. After the transplant, I can, or at least I hope to, live for the moment. I am not living for the moment now, I am waiting for a course of treatment that I am assured, is far from pleasant and that is always in the back of my mind. Every added week to this process, that goes against my initial expectations, are days added to my sentence and I didn’t do anything wrong in the first place.

Four weeks. I am not entirely sure what can happen in four weeks. I’ll give it a whirl mind.

EJB x

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