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The Fear – Part II

You have stopped responding fast enough to traditional Myeloma treatments’.

Fuck. 

Few things warrant the use of such foul language, especially in the written form, but a ‘fuck’ or a ‘bugger’ is definitely suitable in the situation I found myself in last Thursday afternoon. I didn’t say it out loud; I was still able to maintain some level of decorum.

I think I know what that statement means. It’s not the worse news I could have received, but it is not far from it. It wasn’t what I was expecting. It is a polite way of saying that my treatment isn’t working. Not working. Stupidlyhow could I have thought my treatment was working when I was in so much pain? In fact, after my first full cycle on the recently licensed drug I was on, I told a Medically Trained Person that I did not think it was working. I wish, with every weakened bone in my body that I was wrong. I wasn’t. 

 Am I dying? 

I don’t think I thought all of this or processed it when I was in the Medically Trained Person’s office.  I was in shock and I was trying to hold myself together. I didn’t hold myself together. I couldn’t speak, not initially anyway.  The first words I uttered, did not sound like fully formed words. It was an explosion of emotion. I tried to say that I wanted my hip fixed but that became a sob about how overwhelmed I was with the news. That’s right people, in this circumstance, I simply chose to yelp ‘I am so overwhelmed!’. Then I sobbed. It was not a cry, it was a snot-producing, face-pulling sob that was softened when I saw the tears in the eyes of the Medically Trained Person.  

I haven’t had long enough.

Thank goodness for my Big Sister. I had no doubt that she would step up in this kind of  situation and step up she did. I think I had become deaf to what was happening around me. To me, everything that happened in that room was a blur, but she wrapped me up in metaphorical love and got on with what needed to be discussed. It could not have been easy for her. It is one thing to be afraid of something, but facing that fear head on, whilst holding somebody else up, is on another plain entirely. I know that it was not just my fear either. What is happening to me, what was said in that room, is a fear held by everyone I know (and happens to like me). I will readily admit that I lost control. For the rest of that afternoon I repeatedly tried to compose myself, but failed miserably. I didn’t know that tears could flow so uncontrollably. Nor did I know that I was capable of talking such complete and utter drivel. But, for the rest of that afternoon and evening, I had my sister sitting next to me, looking after me and discovering the many benefits of a banana milkshake.

Am I a failure?

Anyway, let’s move on from this emotional mumbo jumbo; we have some real business to get to. In a nutshell, despite three stem cell transplants and many, many rounds of treatment my disease is currently active and my paraprotein is on a rampage. It is so active that I have to have radiotherapy on the distruction it has created in my body. Whilst the drugs I have been taking including the one I changed to in January are doing something, the cruel circumstance is that they have not been doing enough. This leaves the question I asked just a few months ago, what else is there?

Is this the end of the line? It now seems an almost rhetorical question. 

I do not wish to bore you with the history of Myeloma treatments, largely because I’ll reveal how little I have chosen to know about it. I’ve been deceiving, most of you will know far more than I do on the subject. For where we are in my story, all you need to know is that new myeloma drugs tend to be derivatives of older drugs. They are related.  This means, in a shake-your-head, we’re-out-of-ideas sort of way, the Medically Trained People do not think that such medications will work on me for much longer. It’s hard to process that, I almost have to sound it out in slow motion. And then repeat it. And repeat it again.

There are too many things to say about all of this and I don’t have the distance or the benefit of an adequate pain and drug feee sleep to eloquently describe how I feel. I know I am angry. Since I was diagnosed, I did everything I was asked to do. Almost anyway, I haven’t lived in a complete sin free bubble, but I have lived and I have done what I have been told to do. I took my various treatments, I coped with the disappointment after disappointment and still, I get out of bed almost every day and take the pills I have been prescribed. Yet it has still gone wrong. I used to joke that given my age and the flocks of people trying to help me, that I was a medical marvel. I willed myself to be, terrified that I wasn’t. It now transpires that the only thing marvellous about my treatment history is in how powerful my Myeloma has been. Perhaps I should have gone gluten free as one nosy Parker once offered as superior soundbite.

I do not believe in any kind of divinity. I have nobody to prey to and nobody to blame. A stranger once told me that my lack of faith was the reason I had cancer, but let’s face it, there are a lot of knobs in this world.  When I add it all together, I just think something bloody awful has happened to me and no matter how much I have fought it and continue to fight it, it’s stronger than I am. Long gone is my bereavement for my lost children, old age and a picket fence. My fears now seem so much more urgent.

I don’t know why this happened to me, but for the last week, I have felt ashamed. I know that I did not bring this on to myself, even if I do love white bread too much. I do not believe that somebody’s willed for this to happen to me. And yet, I feel like I should have told my body to do more. Fight harder. Forget about being polite and smiling at everyone, I should have been a total bitch, constantly in attack mode like the scary army captain I met once in the cancer centre who made me cry when she announced it was her sheer willpower that caused her continued remission. I have willpower. I have multiple reasons to live, and yet I currently live in a world where I cannot do up my shoes.  

I should have reacted better to my medication and treatment plans. All those odds, all those odds and I was always on the wrong side. I’m angry that all of this is making me think about what this world will look like without me in it. I didn’t realise I have so much to lose. I watched my mum run around after me at the weekend, making me food and making sure my neck was adequately supported by my pillows, I listened as my nieces nervously tried to make me laugh as I tried to rewind my tears, as their Mum tried to keep us strong, and with every vibration, I could feel my friends trying to cheer me up or express their anger. I feel like I have let all of them  down. 

I made so many half promises about my treatment. This one will work. We will go on that trip. I can make it to that pub. Seeing the waves of broken promises scatter around me is my new definition of fear.

But what the hell is all of this? I cannot stop yet. I must not stop yet.

The Medically Trained People aren’t quite ready to stop and nor should I be. Last Thursday, when Big Sister’s concentration powers really kicked in, I was told of a clinical drug trial at St Bart’s involving antibodies. I could give you the medical blurb, but I think I should save that for a rainy day. All you need to know is that it is completely separate to all other treatments I have had. It might work, it might not, but the space on the trial could be mine. It took a few days, but I can now firmly say that I take back everything negative I have said against that hospital. 

A lifeline. 

It may sound foolish, given my very limited options, but the thought of leaving the comfort of UCLH once more added to my devastation. That hospital, in both my successes and failures have held me up. I have no other point to make on this subject, but it’s important. Ever the pragmatist however,  as I said last week, I think I said it anyway, if it is not clear to you yet my memory is a haze; ‘it is what it is’. I have to get on with it. 

On top of all that has come before this,  we had to discuss my need for radiotherapy. The practicalities. You can imagine how long this one clinic appointment felt. So much to take it in, so much to fathom. Ahead of last week, when I was suffering from worry filled sleepless nights, I thought the good and bad news hinged on the what was found in my MRI.  Clearly they did not, and now it seems easy to forget that I need some fairly urgent treatment. I have something in my neck that shouldn’t be there for crying out loud. And yet, the radiotherapy feels like it has become secondary to the ‘big news’ despite how quickly I have once again found myself increasingly immobile. 

I do not know if it is in the form of lesions or tumours or the generic term of bone disease, but I require treatment in my neck and my hip. The area in my neck has caused the majority of my recent problems in my upper back and my arms. Again, this may sound minor, but wondering why and how I have lost the sensation in half my hand for the last month, is a blood-curling. To even consider how the knee bone really is connected to the leg bone is mind blowing. If anybody has seen me move in the last month, you would have witnessed how much this pain has made me squirm. The pain and this is something that has not happened in a long time has been at a cry inducing level. I have cried not because I feel sorry for myself, I mean I have done that too, but because the physical discomfort has been so great.

It’s a juggling act though. As I am now due to start a new treatment at a different hospital, my doctor was reluctant to also zap (a term I have used a lot over the last week when discussing my radiotherapy, mostly because I can use an emoji) my pelvis. It may lower my blood counts and it will make me feel groggy, but even in the whatever state I was in last Thursday, I knew I needed my hip fixing. To get through my next, I have to be as fit as I can be.

I think it goes without saying, but the last week has been a whirlwind. It doesn’t feel like a week. In whatever timeframe I am now working in, and I guess it is a new timeframe now, I feel like my world has been turned upside down. I have so many things coming from so many directions, that I laugh at the meagre everyday complaints I have been able to read on social media. I used to think I was a great multi-tasker, but when it comes to affairs of my life, and the time that is left in that life; I do not have the foggiest.

I have to give myself a few passes. Firstly, I have been put on a ‘pulse’ of steroids, that is controlling my pain and will hopefully hold the myeloma whilst the Medically Trained People are doing their juggling. It is a ten day course of as much steroids as I can take. That’s right, ten days, decreasing by half every other day. It’s a well known fact that I cannot take a lot of steroids, but to put it into perspective, the first day’s dose was more steroids than I usually take during a full cycle on my old treatment and each weekly dose of that put me in bed for two or three days. I am awaiting for the inevitable crash increasing alarm and dread.

Secondly, I am currently on a lot of pain medication including sedatives. I basically rattle. 

Thirdly, I am once again struggling to look after myself more than I usually struggle to look after myself. I cannot bare weight in my left arm, my right arm is starting to go the same way and every activity, whether it is washing, eating or cooking seems impossible. In this mindset and the physical prison, I have to arrange my forthcoming radiotherapy sessions and attend the necessary testing for the clinical trial. And don’t think for one second, I have done any of that without my lipstick on. On Monday, which again is a story for another day, Mamma Jones and I spent 12 hours in London waiting, meeting new people and satisfying my steroid induced hunger. Today, I have seen a doctor, looked at some scan results, been measured and had two radiotherapy tattoos. 

Lastly, I just ask you to add everything up, consider everything I have said in this here blog and attempt to fathom where on earth I can begin. I have to begin somewhere after all. Welcome, to another volume in my possibly soon to be ended story of my life. 

To clear my head, Mamma Jones took me on an epic adventure to a National Trust property last Friday. I thought you might appreciate the evidence that I am still here. Getting out of bed.

So, there it is my current story. It’s not cohesive, it’s all over the place because I am all over the place. It’s new. It’s daunting. And my goodness, it is fucking scary. 

EJB x

P.S. Kudos, and I mean bucket loads of the stuff must go to my Medically Trained People and the NHS in general. In just seven days, they have seen me transferred to St Bart’s for (hopefully) the start of a clinical trial. UCLH somehow got my name into the mix of said clinical trial and St Bart’s seem to be moving whatever needs to be moved to accommodate me (no jinx yet though). They have also liasied with the radiotherapy department, resulting in an appointment today which included all my pre treatment measurements, ensuring that all areas requiring treatment are attended to. The treatment for which is starting tomorrow and will conclude next Thursday.  I have no more words in me to describe my gratitude.

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Last Christmas

The following was written some time ago, but unfortunately, I live in a world full of germs and I caught Influenza A and subsequently forgot that I had written this blog, let alone that I needed to post it. It seems a shame to waste my ramblings; so close your eyes (then open them again so you can read) and take yourself all the way back to December 2016:

  πŸŽ„ πŸŽ…πŸ» πŸŽ„ πŸŽ…πŸ» πŸŽ„ πŸŽ…πŸ» πŸŽ„ πŸŽ…πŸ» πŸŽ„ πŸŽ…πŸ»  πŸŽ„ 

You may think that Christmas was so last year, but as today is the 10th Day of Christmas, I think I can just about sneak a blog post about Christmas under the radar.  Plus, ordinarily I love Christmas, so it would be remiss of me after a year of blogging very little, to not recognise Christmas as it is a pivotal part of my annual calendar.

This year, things were different. I found it incredibly diffficult to get into the Christmas spirit. The Christmas spirit usually comes so easy to me. The drugs seemed to have sucked all the energy out of me, preventing me from participating in some of my favourite Christmas activities. Thus, going through December, I was not seeing combinations of red and gold and getting goosebumps, I wasn’t singing O Come All Ye Faithful in the shower. I felt nothing. I know what the main cause for my humbug was, and it opens one up to saying a crude but well timed joke about George Michael; was this, 2016, going to be my last Christmas? I’m not plucking this negativity from the air by the way, there’s a genuine (outside) chance that it was. With that seed planted, what Hope was there to have an innocent, Myeloma free Christmas? 

So, when it came to making my beloved Christmas cards, cards that I had designed and invested time and money into, and had been thinking about since September: I just couldn’t do it. For at least three days, I slept next to all of my craft paraphernalia convinced it would help me complete them. It’s a similar strategy I employed at university walking round with the biography of Menachem Begin for six weeks, hoping that it would go in via osmosis. It didn’t work then either. Comparing the feeling I had to university stress is apt. The enjoyment I was gained from this activity, had passed. All I felt was undue stress. 

I argued with myself for three weeks. You enjoy it, Emma! Pull your finger out, Emma ! Everybody is expecting them! You are a failure! That was one side, the other side just rolled over and fell asleep. It seems like such a mundane thing to get so upset over, but upset I was. Every year since I was diagnosed, I have made my own Christmas cards. Last year, I made and sent over 50. Was the fact I could not do them a sign that medically, I am detiorating or had the Grinch simply stolen my Christmas?   

I cannot answer those questions, but on top of not making and sending Christmas cards, I also failed to do any Christmas themed baking or make the additional decorations for my tree I had been planning for months. The weight of each of incomplete activity, was unfathomable. Is it really possible for me to have an enjoyable Christmas without all the planned activities I once deemed to be fun? 

I refused to give in. I sought any excuse for my humbug that did not involve Myeloma and the makings of a bad TV movie. It must have been somewhere. The search felt endless. Could my lack of festive feeling be due to my age?  That’s never been an issue before, so Veto. 

Due to financial restraints brought on by  not working and being on benefits , I was unable to buy many Christmas presents. Thinking about what gifts I can buy my loved ones and wrapping them up in a style to suit the recipients personality, has always been a Christmas highlight. But alas, that was no longer open to me. I found that I did not even have the energy to think about presents. 

What about work? I thought. My experience of working in an office is that during the month of December (and the back end of November) there would be at least one discussion a day about Christmas. Work drinks, family drinks, Christmas presents, wrapping; the talk was endless. Despite forcing myself to watch endless Christmas movies, perhaps my failure to socialise with colleagues, buoying each other’s festive spirits up day in day and day out was the cause of my sadness. 2016 also marked the first Christmas I had not been invited to a work Christmas Do since I was 14. 

Could that really be it? Had being forgotten by my work colleagues ruined Christmas? In short, no. Veto. I was invited to the Christmas party last year and chose not to go because I could not afford it, and I did not feel any the worse off. Like last year, my free time has to be used and planned carefully. I do not have seven days and seven nights to play with anymore.

It would also be wrong not to mention the level of pain I was in during December. I was in a lot of increasing pain, which on many a day, prevented me from moving. I don’t know how responsible it is, but my chronic pain was definitely guilty of ruining some of December. Upon return to my mother’s I discovered that I could no longer climb stairs without using both banisters. Yet another sign of deterioration perhaps?

Somewhere around the middle of December, coincidently, the day Rogue One was released, something strange happened. I uttered the words out loud that I was not going to be able to complete the cards, Mamma Jones told me it did not matter, and I began to relax. I really relaxed. My dear sweet Mamma lifted the weight off my shoulders at a most crucial time.  Socialising time. 

The 16 December launched four days of back to back socialising, which believe me, is now something very hard for me to do. I was suddenly busy and somewhere in that busy-ness, and laughs with my friends, I stopped dwelling. I stopped yearning for what once was and I began to enjoy myself. I smelt satsumas, mince pies and sang along to the Muppets. Finding my way out my slump gave me goosebumps.

And then, there was home. Home. Aware, at least I think they were aware, that I had been on a long Myeloma Downer, my family pulled out all the stops (at least I think that it was intentional). Christmas itself was marvellous. For the nine days I was home, Big Sister and her offspring were around for eight of them. I felt loved. The time went so quickly, that when it came to New Year’s Eve, I did not want to leave my family. For leaving meant that Christmas would be over and we might not know another one like it. 

Before I move on, anybody advising positivity, believe me when I say that I do not want my fears to become a self fulfilling prophecy. My fears are real and I cope with them by voicing them, much to the chagrin of my loved ones. I see things more clearly this way.

I did not intend to enjoy Christmas. I had been so worried that it was going to be my Last Christmas, that I was convinced I would find every tradition, every action, melancholy. Melancholy doesn’t cover it, I thought that every tradition, every action would rip my heart out through my throat and lay it bare for all the world to see. Thankfully, that did not happen. 

This photo clearly shows me unwillingly embarking on my journey back to London Town.

For me, our Jones Family Christmas worked so well because everybody, well all eight of us, was home. At no point was I stuck in the middle of nowhere with nothing to do. Between Mamma Jones, Big Sister and my neices, I had plenty to do. We did things together as a family and had family fun; I wanted to bottle the feeling up and savour it. 

I do wonder, with the benefit of a few days of hindsight, if it is possible to have a Christmas without the feeling that it will be my Last. Should I have just saved this blog for next Christmas? It’s the unknown. Everything from here is unknown.  I do know that things are changing, I can feel it in my aching bones. I was aware as of the 22 December that my treatment is going to change at some point in the near future, meaning my current treatment is failing. We are running out of options. Another daily thought that added weight to this theory of doom. 

I spent my New Year’s Eve with some friends, doing things that adults do like watching Jools Holland, eating nibbles off paper plates and playing board games. Somehow, I managed to stay out until 4am. I don’t think I did that for all of 2016. To fast forward, I did not have a hangover on New Year’s Day. A success by no stretch of the imagination. 

For the evening in question, I had managed to surround myself with good people and there were a few times during the evening that I could feel that hand approaching my heart again, ready to detach it from my body. I really am full of emotions these days. I don’t want to repeat earlier paragraphs, but essentially high from my visit home, now surrounded by friends I love, I wished that this was not my last New Year’s Eve. 

Despite being asked the question, I did not make any resolutions for 2017. I do not see the point, not for me anyway. Every time I was asked about resolutions or plans for 2017, my answer was the same. I do not want to make noticeable  changes. I want to keep on living. I want to be able to do what I am doing, maintain my freedom.  I want to enjoy my friends and my family. Most of all, I want to be able to make the most of my good days and get through the bad. 

Perhaps these are resolutions after all. 

And this is where the writing stopped and the flu took over. It took over for a whole fortnight, marking a great start to 2017. I know what caused the flu (New Year’s Eve) and who the culprit was (Nameless). I still would not trade NYE’s, despite the vomit and general foulness of the flu. I was ‘living’, right?

EJB x

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Just Giving

Charities are great. 

πŸ’°πŸ’ΈπŸ’³

Personally, or should that read, ‘selfishly’, I am particularly fond of the cancer ones. Macmillan, Cancer Research, Myeloma UK and the rebooted Bloodwise (once known as Leukaemia and Lymphoma Research), have all contributed in some way to my treatment and all round, general well-being. You should all love them and donate your disposable income to them for that reason alone. I am, however, pretty sure that as special as I think I am, I am not an isolated case when it comes to the positive impact these charities can have. I  regularly find myself torn as to which one deserves the most EJ love… Bring  other charities into the giving equation and I am stumped.

A charity, by definition is an organisation designed to help and raise money for those in need. Walk down any high street, sit on any mode of public transport, watch television the old fashioned way or simply look at any type of social media, and you will see that there are a lot of people out there in need. A lot of people. I don’t want to shock you, but there are many bad things in this world. ‘Bad Things’ is the official term, I have spent weeks work shopping, to cover all the horrific, life changing and slightly irritating things that could ever possibly happen to a living thing. 

If all the shopping centres, buses,  adverts featuring music by Kate Bush and a phone number, door knockers and status updates are true, there exists a charity for almost all the Bad Things that can and do happen everyday. Illness, death, poverty, war, famine, the environment, dogs, cats, dogs and cats. 

The list is endless and can appear, relentless or at the very least, saturated.

It’s a common scene, when a person cannot make it down a street without being pestered by a person donning a brightly coloured anorak and a fake smile, rattling a money box or dangly a clipboard in your face. As it is now a mere 80 days until Christmas, we are in peak charity (over)drive. It’s the blitz. Everybody, everything, even those dogs and cats, need more money.

On the other hand in my pocket, the fact that so many charities do exist, is moving. It is reassuring to know that there are many people in this fair land, unlike me, who care about other beings enough to invest their  time and money to the betterment of others. The Bad Things are being tackled by Good Things. I tried to find out how many charities there are in the UK, and I stopped when I read there were over 16,000. 16,000? Many, many Bad Things. This is an aside, but I  was surprised to learn that cancer charities only accounted for two of the top ten highest earning charities in the UK.

I have reasoned, whilst starting this new paragraph, that it is not as simple as Good (the charities) verses Bad (the bad things). Charities must have to compete with each other. If charity really goes begin at home people, then how on earth do people decide which individual charities to donate their hard earned, and limited cash to? Maybe people don’t think, and they donate as and when they feel backed into a corner; I know that is what I used to do.

It’s not just a question of cash either, charities need investment in time, knowledge and understanding. It could be a result of my constant drugged out haze, but I cannot begin to fathom how charities find a voice loud enough to be able to endure, when there are so many charities to choose from, who are equally and unequally vying for your attention. 

My charitable attention is selfishly directed to illness, and a certain illness at that. I would think you a fool if you could not deduce the illness of which I speak. I do not know how able bodied and able minded people decide. In my pre cancer world, I would donate out of guilt, empathy, a good advertising campaign, office related sponsorship or various combinations of the above.  With 16,00 charities in the UK alone, it makes for an extremely competitive in the Third Sector. Sorry, I meant cutthroat. 

In the last few years, maybe because I am more sensitive to campaigns, I have seen charities become more inventive when it comes to fundraising. The Ice Bucket challenge, Coffee mornings, make up free selfies, awareness days, Movember, girls’ nights in; it seems charities have to think outside of the box to garner attention and take in the big bucks. Charities are a business and just as in business, despite the noble origins, it appears to me, a dog-eat-dog world. 

Last year, when people were scrambling to poor ice over their heads for ALS, I remember reading various comments online that said it was unfair that the charity was getting so much attention and money, when there were so many other, needier charities to donate to. To clarify, I am paraphrasing other people’s thoughts and these are not my own (Mamma Jones asked me to do that, in case people misconstrue my intentions). Anyway, at the time, when I read these commentaries, I did not see why it had to be an ‘either/or’ situation. Those comments felt like cause shaming, or playground antics, squabbling over what is the worst (and thus the best) ailment.

Yesterday, I saw an example of this (at least that is how my sensitive soul read it) on the book they call Face. I read a status update, the kind of copy and paste job that people are challenged to post in the hope that it goes viral. The cause may be worthy, but I deemed the technique they used to spread their message as insensitive, flawed and ignorant. The update read:

October is Infant/Pregnancy Loss and SIDS awareness month! Let’s take some time to remember….[I have edited the middle]… Make this your status if you or somebody you know has lost a baby. The majority of you won’t do it, because unlike cancer, baby loss is still a taboo subject. Break the silence. In memory of all lost.’

Unlike cancer

Call me opinionated, but I think it is unacceptable to pit one horrific and life changing thing against another, wholly unconnected, horrific and life changing thing in order to gain awareness. I cannot begin to comprehend what it is like for a person to lose their baby. It is indeed something in need of discussion and awareness, especially when it comes to how the NHS cares for the parents who have had to endure such a loss. But, whoever originated the above campaign, in my mind at least, lost their credibility, the moment they typed ‘cancer’. The two are not comparable. End of discussion.*

Do people perceive cancer to hog too much of the public sympathy, and thus too much of the limelight? Cancer may well recieve more publicity and support in comparison to other ‘Bad Things’, but it does not mean it is incorrect to publicise or care about it. Cancer charities only accounted for two of the ten highest earning charities in the UK last year, and yet I understand that it can at times, seem like it is prioritised or sits on an indescribable pedestal. But, I wake up everyday and think ‘cancer’, so I am biased. A friend once argued with me because they believed cancer gained more sympathy than mental illness. It’s the sort of attitude that creates some sort of artificial hierarchy, where there does not need to be one. Nay, there should not be one. 

Causes should be judged on their own and stand alone. Charity should be about giving not chastising, and yet the latter will always exist. Of course, we cannot individually give to all charities, but they should be able to exist side by side… Charities are about helping people after all.

And so, in the run up to the festive season when you can see nothing but a rainbow of coloured anoraks and you are bombarded with donation requests, please don’t get angry. The answer is easy, just give to who you want to give to and say ‘no’ to the others. It’s simple maths. 

πŸ’°πŸ’ΈπŸ’³

As for the statement that cancer is no longer a ‘taboo’ subject; that is another, lengthy, blog entirely…. Until then, I will simply say that my personal experience would contradict this. Strongly contradict it.

EJB x

P.S. This is not foray into the complex world of giving, I was opinionated in 2013 too. https://ejbones.wordpress.com/2013/03/19/the-charity-drives/

* I am aware of the irony that, that was not the end of my discussion.

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Food, Laborious Food

Since my release from hospital, similar to all my other releases from hospital I have been preoccupied with two questions, am I eating and drinking enough? And what does it mean for my treatment of if do not eat or drink enough? Right now, as I type this blog, food is not my problem. Well, it is a problem in that I have been told to remain on a neutropenic diet despite my neutrophils reaching the mighty heights of 2.4, and all I really want is a large plate of salad, finished with a serving bowl size bowl of raw strawberries. Not being able to eat certain foods is a minor problem. It really is,  in the grand scheme of everything I endure, a few weeks of tinned or browned preserved food is no hardship. The substance that concerns me most in my two questions is fluids. Trust me, I did not think it would be possible to talk about drinking water as much as I have find myself talking about drinking water, but it is. I am  preoccupied with the idea that I am not drinking enough and by not drinking enough, I am wasting the NHS’s current investment in me.

I have been told to drink at least three litres of liquid a day. When one exercises and talks to a lot of people a day, I think this is an achievable goal. When you have been told to limit yourself to five minutes of exercise a day, don’t see enough people in a day to create a thirst to quench, have a mouth upholstered in a light lining of fur and a stomach reliant on antiemetics to hold anything down; three litres of liquid is a lot hold in. Trust me. When fluids are the one thing mentioned to me by any time I talk to a Medically Trained Person, I know it is important. I just do not know yet how important it is, but common sense accompanied by the almost constant talk of my creatinine levels, make me realise that not drinking enough is bad for me. Pick up any leaflet about myeloma, let alone any leaflet about allogeneic transplants and you’d need to be a scatterier thinker than I on my current medication, not to see renal or kidney failure as potential and real side effects of this distardly disease.

Last Monday, I tripped over the weighing scales in the hospital and my immediate thought was that I was dehydrated. I didn’t vocalise said thought because I wanted to come home. My blood pressure was lower than usual, and yet again, my paranoia was all over the place. Fortunately, after a three hour nap up on the 7th floor, my blood pressure had normalised.

A few mornings ago when I started writing this blog, my perception of St Bart’s Hospital was partially saved by a fake memory prompted by the app on my phone, I call The-Most-Depressing-App-In-My-Phone-That-I-Cannot-Bring-Myself-To-Delete-Because-I-Am-A-Tortured-Soul.

That fake memory did St Bart’s a favour, for it reminded me that all hospital food is bad as opposed to all of St Bart’s is bad.  A subtle difference, I will one day get around to explaining. 

Three years ago, as I waited in a hospital bed to be told I had myeloma, I was fed and said of it this: 

 Exhibit A 
Yes, that food was bad. Fortunately, at that time and the second time I was admitted to UCH, I did not want to eat a thing. I had to smell it, but I found a way round this. On T13, I also had access to kitchen facilities and a fridge. During my recent stay at St Bart’s, I did not have access to these things. Fortunately, I did not wish to eat a lot, but most unfortunately, I did want to eat something. I just really couldn’t bring myself to eat any of the following meals:

Exhibit B   Exhibit C

 
Exhibit D

 
The breakfasts were perfunctory enoug. Every day I just had cereal and entered the daily fight for a banana. On the banana front, one, being me had a 40% chance of getting a banana even if one was ordered the night before. I did ask why, on a ward where they accommodate neutropenic patients, why there was not enough bananas for each patient. Banana is after all the only budget fruit fully suitable for the neutropenic body. I kid you not, by day five I was exasperated by my lack of banana. Mother Jones had to b sent out to purchase me my own bananas because not being able to get one started my day on a sourer note than being woken up at 06:30hrs to take my medication.

So that was the breakfasts, but as for the rest? One day I was given a mixture of vegetables, and I could not identify one of the vegetables. It might have been turnip. A turnip? I think that says quite a lot about when the hospital’s menu was last updated. Can people easily purchase turnips south of the Scottish border when there is no confusion between what is suede. I do not mind old fashioned food, I’ve even been known to eat what others deem inedible food, potted hough (this is how the Internet spells it Mum) for example. The investment the NHS makes into feeding their patients however is sensationally shocking. I think patients who are deemed poorly enough to be kept in a hospital over night, deserve something that is considered more than serviceable. I don’t go in expecting Michelin Star quality, my expectations were more around the Little Chef mark, but even that was a complete overestimation. 

Life experience suggested to me that more money would be spent on Kosher or Halal meals in mass catering than your bog standard ‘English’ hospital cuisine. So a few times, despite displeasure from those around me, I experimented. The chicken korma and the lamb korma (do you sense a theme) were adaquate, but my stomach was not exactly in the place for spice even if it was mild.

My complaint is not about the staff who delivered my food. Once one of the orderlies realised why I wanted a banana (to dunk in the ‘custard’ by the way), he went out of his way to make sure I got a banana. Unfortunately, he did not work everyday.

Unlike many NHS inpatients, I am fortunate enough to have people around me capable of spending their hard earned cash bringing in food for me to eat. Mamma Jones and Big Sister spent a reasonable amount of their moolah on Marks and Spencer’s mixed nuts, among other things. In case you care, I found mixed nuts made me thirsty enough to drink. The icing on the cake, the day that pushed me over the edge however, wasthe day I was delivered two main portions, a yogurt and I do not know as one single meal. The order must have been a misunderstanding, a misunderstanding  of the language barrier type, but none of the food was remotely tasty and thus all the food was wasted. Do not believe me? I have the evidence.

Exhibit E  
I felt rather lucky that day, because within 30 minutes of reporting the mishap to my friend, one who had seen my meals over the previous two days, I had an actual nutritious meal.  My hopped on her bicycle and delivered food from Pret a Manger, along with a leftover omelette that looked nothing like the omelette served in Exhibit C. 

Whilst I was in hospital, I felt like saying, “please do not bother”. I might have even said that, but they still try to force the food upon me. Maybe Jamie Oliver needs another crusade…

N.B.

On the days when I feel like there is an improvement in my mental capability, I remember that my mobile phone device is full of  blogging material of questionable quality. It’s a responsibility, for I then feel tied down to telling what a lesser person would deem an uninteresting story, whilst simultaneously knowing that I personally, will feel instantly better for sharing and recording, in a way that can never be taken back, whatever the particular shit myeloma has thrown at me during x amount of time between blogs. 

As the earth has continued to rotate, I gave at least managed to hide the evidence of what could form a blog in my iCloud account instead. I guess today is one such day, I have some sort of energy, except, I started writing this blog about ten hours ago and so far, it looks absolutely nothing like I anticipated it would when I started morning. I am fairly certain for example what this will be the only time I mention NHS meals.

Of late, My Myeloma stories are overflowing in my virtual world and my actual mind, and not on my blog. Few people know just how many days I have spent sleeping in a room occupied by strangers or how many times I have been put to bed. There are times I am so confused by it all, that the easiest thing to do to manage it, is to fall asleep and forget it ever happened. I am not even sure what my reality is 100% of the time. I would have no clue at all if I didn’t attempt at least to try to maintain a record. I need a record of this. I want a record of the times I fell asleep mid sentence, or when I canceled plans with my friends and I cried myself to sleep because I saw no end in sight. Hell, I even want a record of my most recent and nightly nightmares. 

Right now, I’m experiencing something new almost daily, and yet I’m not fully documenting it, as I had once documented before, because the something belonging to my sister that entered my body three weeks ago or so (see I do not even know the day) seems to be killing off all my two autos later, surviving, brain cells. 

I have had four weeks of treatment,and of course we are running very close to a certain three year anniversary, so there are no shortages of tales to tell.  I want to tell them but it’s getting close to medication time.

Almost everything I have experienced since my allo commenced is ‘blog newsworthy’ (people write blogs about Stephanie Meyer’s arm hair right?), I just haven’t quite worked out where the energy is to tell you about it. Know I plan to, it might just come later than I actually experienced it.

I used to think that a late blog would be something of a disservice. If a blog was written out of anger for example, like the half written one I found the other morning, time gives me the ability to calm down, to compose myself, and omit the need to rebuild any of those metaphorical bridges that might have been damaged mid rant. On the downside, by waiting, it takes away that raw emotion, the raw emotion heightened by my inability to eat raw foods, and I feel a little bit like I am making things sound easier than they are. I feel like it makes me sound more composed than I am, when I am really not. Not only that, less blogs I dramatically reduces my site’s statistics and my ego likes the notifications. 

If there is one thing I have experienced a lot of since I started frequenting St Bartholomew’s Hospital everyday, it is raw uncensored emotion. Perhaps the fact I am too tired to blog is stopping me from writing something I would regret at a later date. It’s not a lie, it’s just presented a different way. That is what I keep telling myself when I look at my ever growing list of half finished drafts.

I cannot give you any specific examples, for that would really negate the need of this temporary notate bene. Hypothetically, however, I might have written something negative, something along the lines of;

There is still time to jinx this procedure by talking about it now and I most definitely, most adamantly, most whole-life-depends-on-it-do-not-want-to-jinx-this. But and that is a start a sentence with a capital ‘B, But, I do not like Saint Bartholomew’s Hospital. 

And then the hypothetical thought better of it… Like I said, I did not write that down, those thoughts are imagined. If somebody did hypothetically wake up one morning and write that down before they even got up to go to the toilet, I am sure they had good reason for doing so and it wasn’t because she felt the nursing assistance was slightly rude that morning… Hypothetically. Similarly, so too, could something like this have been said, despite me never actually joining any of these words together to make a cohesive sentence;

Every time I have experienced Red Thumping Rage over the last 17 days, I have felt like a teenage brat in great need of a reality check, a slap round the face, a smidgen of gratitude and a slow play replay of the NHS part of the 2012 Olympics opening ceremony.

I could even have imagined images of clutter or me sleeping. Maybe, like I said. I do not know. The negative portrayal of a scientific marvel does not sound like me. 

  
  

I love everything remember? I think my care is great. I love talking about myeloma and myself, and I cannot wait for the time when I have the effort to do it properly, with a proofread. Until that point comes back, we get what we get. 

It’s much like the unpredictable bowel.

EJB x

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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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Best Laid Plans

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

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

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

πŸ“‹πŸ“‹πŸ“‹

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

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

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

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

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

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

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

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

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

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

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

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

A Best Laid Plan

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

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

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

EJB x

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Volume 2

I And so, it starts all over again.

Yesterday, the plan, if you can call it a plan for me, was laid out before me. It is with great pride that I was able to make it through the appointment without crying.

Wearisome Street

There is not a visit to the Macmillan Cancer Centre or it’s mother, UCH, that I do not talk myself through my sheer hatred of Tottenham Court Road and its neighbour, Euston Road. In this, I am really including the entire area, and the surrounding streets of University Street, Huntley Street, Grafton Way and Gower Street. Sure, some of the roads display some interesting architecture, but to me, this area of London Town represents my myeloma prison, which is monotonous and ugly and grey.

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Image 1: Macmillan Motel

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Image 2: Pensive Palace

It has not always been this way, I think perhaps, until my transplant, I saw Tottenham Court Road in a similar way to the way I see a certain area of Victoria. I saw it like a workplace and I think I almost enjoyed the familiarity of it. I do not recall being bored of it or associating it with great misery and sadness. July came, when I was not allowed to leave Tottenham Court Road and with that small rule and neutropenia, came loathing, unadulterated loathing.

I do not care that Tottenham Court Road has a Gregg’s Bakery that stocks the Gregsnut, nor do I care that there is a cafe that makes Mamma Jones’ favourite banana and orange drink and I almost do not care that it has one of the greatest homeware shops to have walked the planet since Woolworths. I am in no way a fan of any of the dozen pubs I have frequented in my lifetime.

Five days during a heat wave limiting myself to a 0.5 mile radius followed by 12 days looking at the same scene out of a window was enough to ruin it for me. Nothing in this area of London will ever truly be enjoyable now, even if I were in Stringfellows objectifying men. I travel there for treatment and that is it.

I have visited the prison twice this week; yesterday for treatment and on Monday, I had counselling. Both inward journeys were accompanied by my usual thoughts of abhorrence, as was yesterday’s outward journey until I reached Kings Cross Station when more positive connotations, like the best hot pork roll this side of the Mississippi crept into my mind. My outward journey on Monday however, broke from my norm.

If truth be told, which is quite possibly the most annoying phrase to feature in the modern English language, I surprised myself. I am hardly a beacon of positivity and smiles when it comes to My Myeloma these days, something which was touched upon during my appointment that day. As I left the hospital, I was annoyed because my bus did not stop at the bus stop on Tottenham Court Road because TFL decided the best place for a multi bus stop was at a busy main junction preventing buses from stopping, so I had to walk up to the next stop on Euston Road. Trust me, if you are not familiar with the area, the bus stop in question l, is uglier than the one on Tottenham Court Road, looking out at the natural beauty that is an underpass. I would like you to imagine the face I had on, full of evil thoughts and two chins. As I waited however for the 73, I looked up and I had an epiphany. Looking straight ahead gave me an underpass, whilst looking up gave me an epiphany. Deep.

This is what I saw:

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It might mean nothing to you, but that building is also know as University College Hospital.

After having spent an hour talking about ways I can combat the negative, I saw a positive in UCH’s tower. I saw the window I looked out of for the worst 11 days of my life, longing to be standing on the street waiting for a bus heading to Dalston, and I realised, I was actually standing on the street waiting for a bus to Dalston. And there it was in that moment, I accepted that I have come a long way and that I am doing well. People tell me this, but looking up at that window on the road I hate, I felt well off. It is a brittle feeling, because I fear the bad, but in that moment, I was relieved to be in remission and it was kind of nice. I was probably listening to something rousing.

Seriously though, so deep.

I still bloody hate that area though. It is way gross.

EJB x

P.S. I am am aware that I have also referred to my flat as a prison. I thought I need to acknowledge that fact. I have been doing a lot of time.

Miss Forgetful

It is a well know fact that I lose things. Usually, the things I lose are items I have to carry in addition to a handbag. In my pre myeloma life, this absent mindedness was reserved for umbrellas, mobile phones and red hats. In My Myeloma world, the umbrella has been swapped with the Walking Stick.

I have been fortunate post August 2012 that every time I lost something, like a hat or a walking stick, I have been able to recover them from Sainsburys or by my front door, that was, until a cold day in December, when I finally, actually, most certainly and positively lost my Walking Stick. Fortunately, it was not The Walking Stick, it was my back up stick, but still, the pain of losing it still smarts, one month on.

The situation was this. I had travelled to the magical land of Wakefield, which is part of me being a grown up once more and building up my energy. A grown up I was, until I went to get my return train and as I walked on to the train, I realised I was missing something, something important. I glanced to my left, out the train window and as it pulled away from the station, I saw it, my walking stick resting against the bench where I was sitting. My head dropped in shame. Not only had I lost a stick, but I also lost Β£15 because I had to get a taxi home because I could not walk safely.

Upset, I was. Wounded, I was. Then, two weeks later, I lost a hat. Another hat. Balderdash. Sad times. Neither were handed in. I whined. Specifically, I whined at my mother.

For those of you who do not know, Mamma Jones can be a joker. As a child afraid of seafood, for example, Mamma Jones thought it would be funny to place prawn heads around the toilet seat to scare me. Scare me, she did. It wasn’t child abuse I assure you. With the same, clean, sense of humour, on Christmas Day, I received a large, oddly shaped present. I was intrigued, especially when I saw her smirk. Imagine my surprise when I discovered that inside this oddly shaped present, was a new NHS style walking stick, but, this time, with a return address and the words ‘help, I keep losing my stick’. How I guffawed. Guffaw, guffaw, guffaw. Mamma Jones. Funny lady.

The next step is to sew my name into all my belongings. It’s a necessity.

This disease I have is so unfortunate. Not myeloma, the other disease. The losing stuff disease. One day I might enjoy a more attractive walking stick, but, the cold hard truth is that, I, Emma Jane Jones, just cannot be trusted.

Shame.

EJB x

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