Tag Archives: death

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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The Fear – Part I

I used to be afraid of many things. Several things in fact, despite having a pride in being able to manage a spider or any such creepy crawly, I was quite the scaredy cat. It is for that reason that my knowledge of horror films is so distinctly lacking. My worst nightmare would once to have  swallowed a goldfish, but even that causes less goosebumps in me than they once did. I’m not an ox, I still would not enjoy it and any trip to an aquarium equites avoidance at the tanks at all costs. Even the recent odd sighting of a mouse in the flat (mice in Spring, seriously?) has caused more of a whelper than the once or thrice shriek of years gone past. I say all of this, because I have quite a strong inkling that I now know what real fear is. It’s not an inkling in fact, I most definitely know what fear is now and it is all linked to My Myeloma. Myeloma, with it’s series of unknowns and what ifs is terrifying. My Myeloma, which seemed to have inherited the most dogmatic of personalities, so far, can do whatever it wants to me. What I want, what I will and what I need, is barely a factor. In my world, it is, what it is.

Where am I then? For the last few months, since the beginning of the year, I have been experiencing increasing pain in my left arm and in the left pelvis. The pelvis issue is a long standing issue, worsened by my holiday in November and maybe some excess (unnecessary) walking in Amsterdam. When one like me has such keep-you-up-at-night and cannot-climb-into-the-shower sort of pains, there is only really one way to find out what is causing these particular pains and that is the MRI Scan. 

Long time readers with long time memories will know that I loathe the MRI scan. My first one on 20 August 2012 was, without a hint of hyberole, the most pain I have ever experienced in my life. I loathe the procedure, but most of all, I cannot abide waiting for the results of an MRI. I’m terrified of the big reveal. And that, my dear friends is where I currently find myself. Waiting for a Big Reveal.

I can imagine what you are thinking. You are probably thinking there will be no such big reveal, and the pains are just minor things and if there is anything lurking on her bones, then they can be simply zapped away. I say that to myself. Sometimes. Inside my head, I am thinking about massive tumours, secondary cancers and death. Housemate is currently particularly fond of telling me that the pain I have is a trapped nerve. The problem my politeness fails to reveal, is that I know my body. I have known every time I have relapsed by the new pains and I know that this is what is happening to me this time. 

The problem with this time is, what do we do three transplants in and various treatments later, if I gave relapsed? Don’t think about it. Don’t think about it. DON’T think about it.

Clearly I am thinking about it? So, planning  ahead, and realising that I occasionally do need somebody to hold my hand, I asked for Mamma Jones or Big Sister to attend the clinic appointment that followed by MRI scan on Saturday 25 March. It’s mostly so they can listen and ask questions, in the event of me becoming a shelf shocked mute. We had five days to wait for this reveal and believe me when I say, it was a substantial wait. As I am a behind in the story, and to create some more suspense, I’m going to make you wait a little longer too…

In the four weeks prior to my scan, the nerve pain in my left arm had become unbearably worse. I couldn’t sleep properly nor hold a proper stance. I had taken to wearing a sling outside, not because I wanted to be on the cutting edge of fashion, but because I thought it would give my back a break from carrying around my 2 stone + of arm. Gone was the medically trained idea that it was caused by neuropathy caused by previous medications and in were words like, ‘previous disease’ and ‘tumour’. My personal favourite was ‘not to alarm you, but if anything changes, go to A&E right away’. 

And with that, I was left in a long, hot pressure cooker.

As you might have surmised, initially, if there was an alarm, the Medically Trained People did not show it. A feat in medical training. I had lost feeling in half of my hand and had constant shooting pains in my arm. But, as the pains showed no signs of abating, I was prescribed medications. Lots and lots of medication. 

I have always considered my pain relief systems rather light, but in the matter of a few weeks, I had gone from having 80mg of MST (slow release morphine) twice a day, six paracetamols and two Lorazepams which doubled up as my anti nausea tablets. To, 100mg of MST twice a day, plus breakthrough pain relief, eight paracetamols, 300g three times a day of Gabapentin, four lorazapam and then in increasing doses finalising at 50mg of Amitriptyline, to allow for something resembling sleep. Even my ever increasing nerves were unable to shit that increased intake of medication out.

So not only was I in constant pain, I was constantly exhausted, making me feel constantly irrational. A sleep however, even if it is drug induced, proved better than no sleep at all. Even if I did feel like I was on the edge of my seat the whole time.

Despite all of this, I still tried to be strong. I mean, I didn’t really sleep much in the week leading up to my appointment and I relied quite heavily on my friends to keep me distracted, but I socialised and I laughed. Thankfully, the weekend of the 25 March was not just the weekend I had an MRI scan, it was the weekend of my most dear friends’ wedding. The distraction was just the tonic, even though I had to leave early on one day because I felt like somebody was playing the banjo on my funny bone. 

This is a picture of me to prove that despite looking dead, I was still doing my damnedest to live, as Miss Havisham. It also shows I exist.

Wondering what was going on was never far away. I’m going to let you into a little secret, in November, as part of my attempts to medically retire, I received a letter saying that I had an outlook of 12-15 months. 12-15 months! Ever the pragmatist, I took this as the worst possible case for my 32 year old lifeline and hid it in a drawer somewhere in my brain. There are no finite treatments remember. 

As much as I like to pretend I’m a fighter too, I’m more inclined to think the worst when expecting test results. Katy Perry wasn’t going to hear me roar. As the days grew closer and the pain increased, I couldn’t help but be reminded of this timeline and these facts. Add to that every possible consent I have ever signed for treatment, noting severe side effects (SECONDARY CANCER) and I had become a shaking, irrational, moody pants. Afraid of upsetting myself with my almost self fulfilling prophecy, but terrified of it being the truth and constantly, on loop watching  my life slowly erase from the lives of the people I love. 

Who knew that lying down on a machine for what was nearly 2.5 hours could cause that sort of fear in me, but it did. I think I hid my hysteria well, but that’s just my personal opinion. These discussions, less than five years into My Myeloma journey seem real now.  I am afraid of dying, but I am so scared of leaving my friends and family. 

I have long discovered that this is not a subject anybody who loves me wants to entertain. It’s definitely not something, in the middle of tests one can really talk about because one is trying to be hopeful. It was all I could think about. I felt so duplicitous and defeatest. Some mornings, when Housemate left for work, I would snuggle up to the Bruce Dog and think ‘are you going to remember me?’. I would then apologise to him that I couldn’t lie on my left hand side because my pelvis just couldn’t take it and worry he was going to hate me because one day, I won’t just leave on a weekend trip to my parents’ house. On the issue of my pelvis, this is indeed a mental fight I have with the dog on a daily basis. He doesn’t understand why I have to lie on my right hand side. He’s a bloody dog.

So, then the day came. My clinic appointment at UCH on Thursday 30th March. I was so nervous, I ploughed down a  packet of Refreshers in my first 15 minutes of waiting. My need for sugar was greatly met by my Big Sister with a nice, unhealthy slam of Tablet. The best food with a medical name on the market. I don’t recall much of the waiting period. I know it was a few hours and I did my customary monthly pregnancy test. I remember Big Sister saying my favourite Medically Trained Person had a good poker face, but that was it. 

What fate was going to greet me when I was eventually got called through? Then it happened, I was called through not by a registrar, but the Head of the Clinic. Bad news. I walked in with my best smile on and my head held high, for that is all I have always done.

The MRI scan did show disease in my neck, which is causing all the pain in my arm and my arm. Blah, blah, blah. My pelvis is also in such a state that it’s impacting on my muscles and it is for that reason, I have required a step stool to get into bed these last few months. Fortunately, these little nuisances can be treated by radiotherapy. Frustrating, sure, but fixable. I exhaled. Briefly.

For what came next, could well have been the worst thing I have heard since the day I found out I had myeloma.

You have stopped responding fast enough to all traditional Myeloma treatments…’

And with that, maybe a minute or so later, I cried.

To be continued….

EJB

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A Little Less Superstition

I have known all about the statistics of myeloma ever since somebody first removed a piece of bone from my body. They are statistics that I thought I had come to terms with and understood. As with everything else I can interpret as ‘bad’, I acknowledge it, and move on and then when I need to acknowledge it again, I do so and move on and that is how it goes. The issue at the moment is that I do not have a great deal to move on to. Myeloma wise, I am on a one way trip to an allograft stem cell transplant and this, my dear friends, I find absolutely terrifying.

I can pretend to not be scared by the 40 percent mortality rate and the various complications that can come with the procedure, but that pretence does me no favours whatsoever. I know this, because I spent much of the last fortnight of October bursting into tears as I spontaneously contemplated my own mortality, pretending that I was not worried by it. I believe I confused admitting that I have these thoughts were in someway admitting that I was not brave, which of course is not true. I am the bravest. I did attempt to talk about my fears, but it does really help members of my Support Network to think of my early demise either. The stock response tends to contain the words, ‘silly’ and ‘fine’ and then the conversation is shut down. I cannot shut down my own fears that statistically, it is far more likely that this could be my last Christmas than it would be for anybody else I know.

I have not lost complete control of my senses. Chill. It would be wrong to say that the forthcoming, on a date to be confirmed at some undisclosed time in my future, transplant occupies all my thoughts, but it is never far from my mind. It would also be wrong to say that I view the transplant as a negative experience, for I do not see it as such. Indeed, thinking of failure before the deed is done, could be seen as a jinx, if I was that way inclined. And to confirm;

I am that way inclined.

I did not know it, but my fear and the management of that fear, which I am told is completely normal, has manifested itself in superstition. Not just any old superstition, but overt, occasionally ridiculously, but almost always laughable and definitely without any scientific merit, superstition. Stevie Wonder might say that this ain’t the way, but what does he know? I am pretty sure that I am just being pragmatic and ensuring that I have covered all the necessary bases.

It’s just like taking my drugs…

It all started innocently enough. A few months ago, I was asked to consider doing something that I thought that if I were to agree to it, I would be saying that my treatment would fail and that, in a nutshell, I would die. If I wasn’t signing to confirm my early death, at a minimum, I was committing myself to a lifetime of complications much worse than those I experience now. The word ‘jinx’ was bandied around. A lot.

Since then, these thoughts have developed into something I could not have foreseen. I now see many things as potential omens. It is a logic that led me to purchasing a pair of shoes on my credit card, because they were too much of an investment for pre-transplant wear alone and my morals say that I need to be around long enough to pay of the debt. So you see? It was fine for me to visit the Russell and Bromley website. With that sort of mentality, I could really screw things up for myself.

It goes on…

This Christmas is nothing special. It’s just the same as another other Christmas. To say anything else would be, punch me in the face, pinch my nipple, condemning me to failure, sacrilege. In fact, I decided last week that it has to be called Just Another Christmas. No muss, no fuss. The only issue is, I am yet to decide whether this means I fight my Brother-in-Law for a Christmas dinner, because that is what I would normally do. Or, do I let him and Big Sister decide on how we spend Boxing Day, because I’ll of course, get to decide next year and for several years after . Just Another Christmas, remember? On the scale of jinxing, I’m not sure which route is the best one to take? It makes me feel quite uneasy.

I recently started keeping a log of all the films I see in a little notepad. The record started because I could not remember seeing a film I saw a year ago, but when I saw the size of the book, I realised that my transplant would have to be a success, because I had to be given the opportunity to fill the whole notebook. It’s a lovely little Moleskin in red by the way. For the first week or two, I felt quite confident about my new task. It was a confidence that started to fall away when I realised that there was a chance that I could fill the book before my transplant, and then, instead of it being a good omen, it became a bad one. I started the book on 9 October, and to date, I have seen 36 films I have not seen before. I am just under halfway through the book because I made the foolish decision to devote two pages per film. Foolish oversight.

A few nights ago, I found myself lying in bed fretting over what I had brought upon my house and I realised that I needed to introduce a contingency plan. Basically, I need safeguard after safeguard to ensure that everything goes to plan. Makes total sense right?

I decided that what I needed was a list of films to see that I had never seen before, or, as I am calling it, ‘Films to See in Life’. Notice my language here, there is an alternative name that would roll far more easily off the tongue, but my superstition will not allow it. I stayed awake, deep into the night compiling the list of Films to See in Life. As the list has been formalised in a word processing app, it means that I now have to complete it and I am fairly certain that it will take longer than two years to do so, for my list criteria does not include forthcoming cinema releases or random things I come across on one of the three streaming services found in my flat. The added beauty, inner beauty if you will, of the list is that I can always add to it, thus creating an inbuilt contingency should I find myself able to watch multiple serious films back to back, for days on end. I should add here that this scenario is highly unlikely given my current and future medication. If you do not believe me, try and follow the plot of Robert Altman’s Nashville after you have been awake for 24 hours and you are suffering from a hangover and then you’ll sort of understand what it is like to be on the Revlimid, Dexamethasone, Cyclophosphamide, MST and Diazapam cocktail.

I was once somebody whose beliefs were very much grounded in reality, but fear does funny things to a person. At least to me anyway. You all know that now and you can be mindful of it. Housemate is on board too for yesterday he bought me an early Christmas present (I actually think it was a late 30th birthday present) in the form of a Moleskin 240 page Film Journal for us once my little red book is full. Guess what?

I think it bodes well…

In case you were wondering whether this makes me mentally unstable, mind your own business. Sure, as an aside, I was slightly worried about it as a long term management tool, but I have been told that it is completely normal behaviour when one is in quite extraordinary circumstances that they have absolutely no control over.

Just do not tell me that everything will be ‘fine’. Make it ‘fine’.

EJB x

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My Most Emotive Subject

I am as good at meeting deadlines with my blog as I am currently in my work. With that in mind, let me tell you about my Valentines Day. For those unromantic types out there, the date in question was 14 February.

In stark contrast to previous years in which I have been a single only marginally dreading the day when couples show off their lust disguised as love in a sea of red because of my own traditions, I wholeheartedly dreaded the 14 February 2014. I did not want it to happen. There was no tradition, but that was not getting me down. The 14 February was the day I had to see the Person Medically Trained in Women’s Bits. To you, this means that the 14 February was the day I got to sit down six months after my transplant to find out just what it did to my lady bits. My most emotive subject.

I know, and have known for a long time, what My Myeloma has done to my fairytale dream of living to be a granny with a house full of bric-a-brac with photos of my children and their families scattered about for all my guests to see. That is a sentence that I cannot say out loud. And thus, as the day drew closer to the appointment, my dread grew along with a fear of the words I know to be true, but did not want to be confirmed. You. Are. Infertile.

The scariest part of the appointment anxiety, as this is my most emotive subject, is that I did not know what my reaction to the news would be. I had already poorly attempted not to cry in front of the Person Medically Trained in Women’s Bits on two previous occasions, so for this appointment, I thought that mass hysteria was an inevitability. Also, the doctor is something of a cold fish, which does not assist in her delivery of bad news. So, I lined up a Maurice to attend my appointment with me, which eliminated some of my concerns in the lead up to Valentine’s Day. I also strategically arranged a counselling session on the Monday after the Friday before in order to help me deal with the aftermath.

I should be honest, the appointment was mostly arranged by the lovely haematology people because of the side effects I was experiencing as a result of my menopause and infertility, which in turn, are a result of the chemotherapy I had on 17 July. For those who are not preoccupied with my life, the side effects included horrible hot flushes, a lack of flow and other things connected to moisture. Mostly the hot flushes. Hot flushes are vile. They are also embarrassing, particularly if you are obese and trying not to adhere to a stereotype.

It took four months for the department to process my referral, despite me having already seen them twice. That is a lot of sweat. I had a month after I received the appointment date to dwell and image various scenarios in which the result was the same. A fortnight or so prior to my appointment, given the efficient administrative process, I phoned the department to ask whether they required me to have any blood tests to look at my hormone levels or whatever else they look at when they are looking at what I wanted them to look at. A nurse, I presume she was a nurse, called me back and vaguely said that if they were required, they would have been requested. I objected to this, but hey ho, I just wanted to make the most of the appointment and rip off the rather large plaster that constantly itched.

The appointment arrived and, unsurprisingly, it was no where near as bad as I had imagined. Maurice was there to hold my hand of course, which was invaluable. I described my symptoms and the Person Trained in Women’s Bits confirmed that I was going through the menopause. Some symptoms I had been suffering from that I had attributed to myeloma, were apparently, also menopausal, including a weaker bladder and aching joints in the morning. I thought these things were connected to age more generally, but no, in women, it is menopause. I am sure there must be other reasons.

For this so called menopause, I was prescribed HRT in the form of patches, which I wear everyday on my buttocks. Said patches slowly release oestrogen, which will then do a whole host of things to my body, including reintroduce a period. This news came five days after I cleared out my tampon drawer, so I was annoyed.

Then there was the hard stuff. I have less than a 5% chance of conceiving. I believe this is said to protect a Medically Trained Person’s reputation in the event of a miracle, but really it means, you are not producing any eggs. I heard her words and I did not cry. My strength during the appointment astounded me, and I suspect that that came from having somebody with me who did not mind me talking about my vaginal dryness. I even summoned the strength to ask a question Big Sister had armed me with. Can I carry a child?

The short answer is yes. I can carry somebody else’s bun in my oven. There is currently no damage to my womb. A slight flicker of hope.

The long answer is more complex. It goes something like this. Yes, I can theoretically carry a child, although I am not sure what consideration would need to be given to my lesions and whether they would veto any plans to knock me up. I would also have to lose about a third of my body weight in order to get any form of IVF; this is probably no bad thing in general and would help me in one of the points below. My womb is fine now and has not been damaged by my treatment, but if I require an allograft before I can do the above, the radiotherapy would most likely destroy any hope I have of breeding. On a more practical level, I am single and I am not getting any younger. I would have to find a man who accepts my standing and decides that he would like to spend the rest of my life with me and I have had no luck so far before the hurdle of myeloma. How would we pay for it? And then, the question that terrifies me the most, if the medicine is available to me, would it even be fair to bring a child into this world when Wikipedia tells me that the probability of me living to it’s tenth birthday is slim?

And thus my dreams hover over a flushing toilet.

For this, for all of this, I hate myeloma. I may have held myself together in that appointment, but I grieve for what I have lost, I cry for knowing at some point, I may have to make a moral judgement and for the possibility that I may never be afforded the opportunity to make that judgement.

The appointment itself was anticlimactic. Like I said at the start, I knew what was going to be said, whether I wanted to hear it or not, and I think I had managed to shed my tears in private.

It has been five weeks since my appointment and in that time, I have gone through a pack of my patches. I also got frustrated when I asked for a re-prescription from my General Practitioner and they insisted that I visit them to be thoroughly assessed because the person who specialises in all things womb, had been remiss, according to them, to have not fondled my breasts. Needless to say, I found this a ridiculous waste of time and a drain on valuable NHS resources. Of course, I failed to say this to the GP. In the six weeks, my hot flushes have lessened, my nausea has increased, 50% of the time I can sleep through the night without nature calling and yesterday, I was reacquainted with my flow. It was rather novel.

As for the other stuff, I try not to think about it at all, but living in the world, one sees babies, if they do not see them, they hear about them and on these occasions, all I can do is swallow.

EJB x

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Parental Guidance Advised

For a good long while now, I have avoided a certain sub-genre of entertainment, because I do not find it entertaining. If I were to watch such entertainment, my viewing pleasure would be severely reduced by the very likely chance of me leaking snot on my clothes whilst my eye makeup melts down my face, imagining my end whilst feeling wholeheartedly ashamed of myself. The BBFC may have their ratings system, but I have and need quite a different one that is not determined by how many nipples I see or how many times Leonardo DiCaprio days ‘fuck’. Mine is about self preservation. It is for this reason that I still do not know who Walter White is, which prevents me from making knowing on trend pop culture references in my daily conversations.

The motion picture, and in this, I include the images received on the tele box, because that, apparently, is where real filmmaking creativity can be found in this modern world, is a form of escapism. Sure, it is not always a barrel of laughs, and it can be challenging, but it temporarily takes one away from their story, into somebody else’s. Unless you are watching Panorama that is, but I do not watch Panorama, so I can make sweeping comments like the one above. As Lina Lamont says, films can bring a little joy into our humdrive lives. I have found since August 2012, that my need for and enjoyment from other people’s stories has been greater than ever, and I really enjoyed them before myeloma happened. Now though, these stories cannot feature somebody with the ‘C’ word or dying from the ‘C’ word, for if it does, my enjoyment is severely compromised.

I am aware that a blanket ban on anything mentioning cancer is impracticable. Cancer, as I have discovered, is everywhere, not just generally, but hiding in programmes one would I assume safe. Take last year’s Oscar night coverage, when I wanted to be looking at the red carpet, feeling emotional that I am maintaining a tradition, one of the presenter talks about her cancer diagnosis and recovery invoking jealously and a swift return to my realty. Even The Sopranos can be ruined by a supporting character dying from lung cancer in prison. And my childhood favourite of Beaches has been vetoed forever, and it’s not just because I have taste now.

Apart from the fact that any reference to cancer reminds me of my personal situation, the problem with cancer on TV or in movies, is that the depictions are unrealistic and I buy into that, imagining the best or the worst, whatever they are serving up for their willing audience. Films are either so incredibly sanguine, cutting from a breathless deathbed conversation to an image of a coffin soundtracked by a power ballad, which is there to tell the audience that now is the time for them to legitimately cry, or it is unrealistically jovial about the treatment, the side effects, the timescale and the recovery. They paint false ideas of what it is like to have cancer. They don’t paint my story.

So, you can see from the evidence above, that for my mind’s sake, it is best for me to avoid the ‘C’ word when seeking a temporary respite from the reality of living with it. That is why I have developed a ratings system, so that I and my friends can know what it is safe and what is not safe. I think there are still a few tweaks to be made, but you’ll get the gist.

UUniversal
Films/TV can include, mass death and natural disasters like Dante’s Peak and Independence Day. Not like The Impossible. Also includes, any of the Lethal Weapon franchise despite the grief in 1- halfway through 3 and Back to the Future. Will also allow Disney/ movies, bar Bambi and Up.

PGParental Guidance
Films/TV can include murder stories with minimal to no mourning, definitely no funerals, to include Midsomer Murders or Jonathan Creek . All of Alfred Hitchcock films and Gosford Park.

15Suitable for people aged 15 years and older
Films/TV can now be set in or be about people who work in the medical profession. If I watched Casualty, it would be shown after the watershed. Grey’s Anatomy is also permitted. Films that depict traditional multi generation family structures, for example, Parenthood, are permitted. Films about pregnancy, including Arnold Schwarzenegger’s underrated masterpiece, Junior. Crying to be expected.

18Suitable for people aged 18 or over, contains cancer themes.
Films/TV will include somebody dying of cancer, showing grief of loved ones, people being diagnosed with cancer and then discovering who they really are before it is too late/atoning themselves before the angels come to get them. Can also include films with a happy final scene, showing people smugly smiling whilst thinking of their deceased loved ones whilst looking at a flying bird. To cover certain episodes of House, any soaps if I were to watch soaps, and any of the awful cancer films listed when I googled ‘Cancer Films’.

🎬🎬🎬🎬🎬🎬🎬

Is that clear now? Good. Macmillan need to produce a leaflet.

As I said, sometimes, you just cannot avoid it and this is a situation I found myself in last week, which coincidentally, inspired this blog. I somehow, found myself watching a little French/Belgium production that told the story of a human being with a blood cancer (thankfully not myeloma), dying whilst having an allograft stem cell transplant, and then the last half of the film showed how the death ripped the grieving love ones apart resulting in the suicide of the dead person’s mother. It did not say that would happen on the synopsis. Films like that are my Cannibal Holocaust. Films like that keep me awake at night. Needless to say, I did not find it entertaining. I had to watch a Miss Marple to take the edge off.

And so, I wish you all Happy Viewing, remember, these classifications are there to help you. Be vigilant.

EJB

P.S. I might make an exception for 50/50, which is realistic, despite my own personal jealousy at the happy ending. It is also a reasonably good film.

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Share and Care

The land post autograft transplant, when one went into it with a paraprotein level of 20, is a strange, uncomfortable and rather traumatic one. I doubt that unless you have gone through it yourself, you are never going to really understand what it is like. I know, beyond any shadow of a doubt, that unless you are me, which is scientifically impossible, you would truly know what this period is like for me.

I spent eleven months working towards my transplant. Living within each cycle of treatment and managing my new treatment after the Bad Day, because I was working towards my transplant. The transplant was the goal, and prior to it, I had to get through my treatments, week by week. Now, in the post transplant haze, I am left waiting for something and I am not sure yet, what that something is. I have until November to wait. In November I will find out whether my next step is to do nothing, go back on to VDT/VTD or have another transplant involving a donor stem cell. I do not know what will influence which.

Right now, I do not have an outlook post November. I do not know what my life is going to look like post November. I still cannot plan a bloody holiday. Working towards my transplant, I expected normality after it, but reality says that this might not be the case. I knew it would not be a magic plaster, but it has not stopped me from being disappointed with the reality. I have known this for a while, but right now, it is finally sinking in that this still might not be over, this volume is going to be a tomb and there is a chance that this will go on and on and on, until I stop. When anybody tells me something different, like all will be well in a year, I want to scream at them and say that we don’t know that yet and let’s face it, I want them to shut up. I don’t do that of course, I put on a brave face and carry on until I am alone.

This period that I am in, feels different to anything I have felt before. I am acutely aware of everything that is bad about myeloma, not that there is anything good about it mind. I want to say so many things about how I feel, about my fears, but within My Network, with the exception of my family, I have not said anything because all the way through this marvellous journey, I have been strong and I have been stoic. I may have had the occasional blip, but, mostly, I have carried on with what I had to do at the time and I have never broken down. I have been told by the people employed by a charity to support people like me, that it is usual at this time, that people begin to struggle with the status quo and fret about the future. I am doing all of that, but it is isolating because nobody understands it. I am expected to be stronger. I am expected to be rational. Somebody said to me the other day that I am a victim of my own positivity, perhaps that is paying to much credit to me, but at times I do feel like that. My behaviour up until now, I suspect, makes it difficult for people to comprehend the struggle I am in. Not everybody wants to hear it. I had counselling the other day, and in these things I tend to have the occasional epiphany because I am not in conversation with myself, and I said that I am frequently being asked how I am, but I think few people actually want to hear how I am. They want me to be better and well. It’s too difficult to hear anything else and anything else goes so strongly against my character. What I feel hardly fits into a text message.

How much should I share anyway? I have lost an ability to know how much information is too much information? What are the costs of sharing? Big Sister pointed out that whilst My Myeloma is my own, it also belongs to others too, and she got me thinking whether my approach can be selfish? Is sharing selfish? I do not know how people feel about my diagnosis. Is saying I feel down enough? When does sharing personal thoughts become too much?

Do not get me wrong, some of my stoicism remains. Indeed it does. I am getting out and about and smiling after all. I am not constantly wanting to break down and talk about mortality, a stolen life, and infertility, but I want to feel like I am able to should I need to, and people will not run a mile if I do. I do not always want to talk about it either. For most of the time, I absolutely do not want to talk about it. I want to be to be able to say I feel let down, abandoned or jealous, without it being an attack on my character or a reason for people not to see me. I cannot help the thoughts, they do not feel like my own and I beat myself up over it. I want people to understand that and show that understanding to me. I do not need to chin up, it is not sufficient. I need the opportunity to talk. Again, I was talking to my counsellor and I surprised myself by crying whilst recounting a message I received from a friend, which showed some understanding and crucially, patience. I need patience too. In short, I want to be cut a bit of slack.

I fully acknowledge that this whole thing might not necessarily make me a hoot to be around. I get that it could be a chore. I get that I cannot articulate it and at times I may become a passive aggressive female dog. I get that this sounds selfish. I get all of it, but I need the slack. FYI, These fears are just some of the things I think about now. I am aware that this behaviour and talk may drive people away, indeed, I was warned of this fact. I am not going to talk about it over a post work drink, but it goes back to me knowing that I could if I wanted to, and it is from there that the isolation stems. Boom. Insightful.

This is what I need now. I need understanding, patience and slack. I have been assured that this will pass, it may even pass by November, who knows, I’m a strong gal.

The truth is, I am not strong enough to go it alone.

I don’t want everybody to become my counsellor, that would just be awkward. I want an army behind me. I have an army behind me, however, in this post transplant world, I have lost sight of who does what.

EJB x

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The Numbers

I am trying not to live for my paraprotein result. By live, I really mean, I am trying not to dwell on my paraprotein result. Bloody numbers.

I have spent months waiting for the result of that monthly test, where a few points up or down can have epic consequences. On the one hand it goes down and I got a Christmas with my family, on the other hand, it goes up and before you know, I am back watching my paraprotein level, sweating at the thought of it like I am finding out my A Level results all over again. The anxiety this causes cannot be good for me, maybe good for my bowel, but really, it isn’t good for anything else. The thing is, try as I might, I am always going to fixate on the result.

The Medically Trained People told me not to worry and think about it, but when my paraprotein level is the indicator they go by as to the success of my treatment, how could I not worry about it? Don’t worry about your paraprotein, but it does need to reduce by half for you to go to transplant. Okay, sure thing, now just excuse me, whilst I remove this elephant from the room.

In this area, I want to be a medical marvel. I don’t want to be known as the young lady who got myeloma, I want to be known as the young lady who got myeloma and responded astoundingly well to her drugs and was cured. Alas, that is not a test I can study for. If only I could. My body does what it wants regardless of what the best thing for me is and intellect has no weighting here.

I’ve been pretending I am indifferent to the results, mostly because failure scares me. I failed once before and now, I just see the stubborn figure as a big fat major. Every time I think about my paraprotein level, I think about failure, my mind goes into a spiral with thoughts that do not need to be repeated here. Bad thoughts.

The issue I also have, is that I don’t know what is a good or bad result. I have already been through this once before, so I know that any improvement (see what I did there, positivity)is going to be slight. As much as I would love to fall asleep, have my blood taken and then three days later find out that I have had a reduction of 15, I know it is not going to happen. My paraprotein level takes things slowly, like my erm… metabolism. So, I have to take any improvement as a good sign, as hard as it is for me to get excited about a point here or there. I don’t get excited about it anymore, because even if it goes down, it is still there. I get my exam anxiety pre-results because there is always going to be a part of me that wants to be the medical marvel. I cannot stop myself thinking that, thus anything that is not that, is a big fat letdown, even if it is a move in the right direction.

So, with that in mind, last Friday I found out that my paraprotein level had reduced by a measly three during my first cycle to 23. I am not excited about it.

EJB x

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Friday Nights

Today due to a slight miscalculation on my part, I did not end up taking my steroids until this afternoon, that means one and one thing only. I am awake.

Being awake, gives one amazing stamina to stay out on a Friday night, in fact, this particular cancer sufferer has been out of their house for 15 hours today. I am aware that this a good thing, regardless of the time it resulted in me taking my drugs. I have to try and live, I guess. I don’t guess. I have to try and live.

The problem with good things and ‘living’, is that they always remind me of what I am missing. And try as I might, I am missing a lot. I am not living the life I want to live. That’s the long and short of it. I live a crazy existence where I put on a brave face everyday, and I strongly believe that this is the best way for me to exist, you can see it in my eyes and I am sure the person who told me that, never intended for me to take it this far. The problem is, we all know that my existence is far from ideal. I don’t want you sympathy. I don’t want people telling me they understand, because I don’t think you do. You may empathise, you may have myeloma, but you don’t know what this is like for me.

I am 28 years old and it is a Friday night. Correction, I am an interesting 28 year old and I am narcissistic enough to admit that I was once pretty fun. My predicament makes me unique and I know that because the Medically Trained People told me so. Many times. A year ago, I would have enjoyed the Kronebergs so much, that I would be in a long deep sleep by now, awaiting the embarrassment upon waking on Saturday morning. I don’t get embarrassed now, because that sort of thing is superficial and all I want to do is live. I can say the most ridiculous of ridiculous things and it is okay, I brush it off because I have to deal with the myeloma everyday. Other people may make me anxious, but I don’t make me anxious. I want to get to a point where I can do what I want, and that seems so far away from me. There are days I think, I’ll never get it back. I try, but it won’t come back. I feel beyond middle aged and I am not ready. I will never taste that two day hangover exaggerated by whatever I had done when I am drunk. Now, as late as I stay out, I am still the girl who comes home with her month’s supply of drugs safely contained in their double bag and who takes her Thalidomide and Fragmin when she gets home. I want to irresponsible. I want to have drunk so much that tomorrow all I can drink is Lucozade and on Sunday, I abuse my pesky body with carbohydrates. I want to have lost something, maybe a red hat, I don’t know. I want to go crazy, but I can’t do that. I want to chain smoke, and I mean chain smoke so much that I cough up tar. I want to eat Smash and corned beef. I want to fall asleep with my make up on in the clothes I wore the night before. But I can’t do that.

I enjoy a Friday night. I still enjoy a Friday night. Locking myself away when I have amazing people in my life is not an option, and tonight has been yet another example of those amazing people. Not collectively. The problem with enjoyment is that it always reminds me what I am not experiencing and what I cannot do and what I cannot have. It’s a different level of commitment, trying to prolong your life. There is one thing and one thing only I want to do this weekend, but I am sensible and sensible says that I need to relax, in Dalston, take my drugs and eat fibre. I want to go so crazy that I flash my breasts in public and I have never done that, those bad boys are barely out of a bra in front of another person, occasionally, they may fall into the arm shelf in my kitchen. I want to be ashamed that I used the word ‘fingered’ in a conversation this evening. I want to feel guilty about my indiscretions. I want to stay up all night and I want the reason for that to be my amazing stamina on canned beer, I do not want it to be induced by prescription medication. I don’t want to worry about how I am going to buy my milk in the morning. I want to be me.

My Myeloma, as much as I fight it, has changed my life. It will probably take my life. I know this, because I close my eyes and this is all I hear; it is all I have heard for ten days. There was so much to do, and now I don’t know if it can be done. I can pretend as much as I like and live in the land of make believe, but I live in the constant shadow of death. I cannot be free of that, my transplant offered me some freedom, some respite, but now that option has gone away. I don’t want to know my current paraprotein level, because the future seems so unattainable and I don’t want to get my hopes up again. I believe other people think this too, I know this, because my insomnia tells me that too. This is why I am trying so hard to be seen, because, I constantly fear it is all going to come tumbling down. I am going to come tumbling down and nobody will acknowledge he much I like Kate Bush.

This is my situation and I deal with it as best I can, I just, everyday, at least once, wish that I didn’t have to. It’s so slow and there is no sign of a resolution. People want to know why I cannot sleep, in addition to the drugs, and the obvious answer to the question I do not want to be asked, is try carrying this around with you everyday and taking it to bed every night. Does nobody want to tell me that my aspirations can only be realised in my sleep? Do they think what I think too? Are they humouring me? Who is taking pity on me, some of you are, you told me? Who is put off by it? Is this it?

How was your Friday night?

If my Friday night has taught me anything, apart from the power of solidarity, predictably is safe and it is comfort and in this I find some comfort. Maybe not for the reasons you expect, but I do. There may be a time when spontaneity wipes me off my feet, but not now. For now, I will take my Friday because that is all I can do. Except it is now Saturday. The birds are singing.

EJB x

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Bring It On Please

I woke up this morning, after I had crashed in my bed the day before, knowing that I was ready. Something had shifted. I was ready to start my new treatment cycle, and as angry as I am, moping is not going to change things. So, I woke up ready to attack this motherfucker with drugs funded by your tax money, and I think I am ready its side effects.

Having read the guidance yesterday, I took my time depositing with the greatest of ease this morning because I know that that is going to become difficult again. Bloody shit. Linseed will also be making a return, that’s for sure. Once I was finished doing that, <em>twice</em>, I got dressed. Some would say that I was overdressed for a trip to Daycare, but I do not give a damn. It continues to be my armour. You know that there was a Mac Matte on my luscious lips. <em>Something about me has to remain luscious</em>. Dancing around the flat in my bra and skirt may have seemed overkill, but it made me feel like Sharon Stone and it just confirmed that I was <em>ready</em>.

The chrome coloured lining is that I have been through this before. I know the tricks of the trade and I will use them to make <em>this</em> easier. Upon arrival at the Macmillan Centre I took myself to the Lower Ground Floor where my favourite Blood Taking Man took my blood, because I had the foresight to pick up a blood form yesterday. I then went up a floor to check that my prescription was ready after being deposited yesterday. <em>It wasn’t.</em> I expected this, I have been through it all before, remember? So I smiled politely and said I would be back. I made my way up the Second Floor also known as Daycare, at 11:00hrs. The best time to receive drugs for you get a free lunch. I did not need to check in, I just said hello to my favourite iPhone Loving Receptionist and that was it. It was like the last three months had never happened. The Medically Trained People were saying hello, seeing how I was and I managed to be glued to my iPhone, iPad and iPod all at the same time. It was normal. A normal to which I have become accustomed since this all started six months ago. When I was called over, a mere ten minutes later, I made my way to my favourite red seat next to the power points and settled on down.

Now, I said to the Medically Trained People yesterday that I wanted to be in and out in an hour. It was actually 90 minutes, but I will let them off that because I asked for some extra drugs yesterday and I was surprised to find this waiting to be administered today. That meant a cannula, but I love the Zometa too much to complain. Cannula’s are not a regular occurrence with VTD.

So there I sat, in my favourite red chair getting the drugs and knowing the forms. I was all zeros today, which means no side effects. That will come. I had my blood pressure taken sitting and standing. They didn’t need to tell me, I knew that was coming too. If this is what I have to do once a week, then so be it. I am ready.

At Velcade Time, when the second nurse arrived, I excitingly declared “Emma Jane Jones. 24th of the 5th, 1984. In the stomach please.” And that was it. It was done. Well almost, my nurse, who had evidently never met me before insisted that I had a blue book to record my appointments. Like I said, she clearly had never met me before. As with PADIMAC, that book will last a week. I do not forget my appointments. I then picked up a blood form for next week and got the lift downstairs, where I collected my bag of goodies, which by this point in time was ready. ID at the ready because I was collecting a controlled substance.

Tonight I have to give myself an injection and take my thalidomide and that will be my Day One done. It’s like the first time all over again.

So I finish as I started. <em>Bring. It.On.</em> <strong>I am ready.</strong>

EJB x

P.S. If you want a laugh, try listening to me pronounce ‘thalidomide’. It’s impossible I tell you. Impossible.

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Dashed Hopes

Since the 17 August, I have been counting down the imaginary days to my next volume, chapter, to a time when I can resume my normal, or realistically start my new normal. Along the way there have been setbacks, points in which I could see no end to the twilight I am stuck in. Each time, I have been able to pick myself up and continue with my treatment. I have got this far by setting myself targets and goals; things that I can enjoy after PADIMAC and then after my transplant.

In the last month, my mental planning has been working overtime. In the middle of May I have tickets to see The Book of Mormon, in June I am going to be a bridesmaid, I want to walk up to the top of Monument, I am going to go on holiday to Cornwall and I am going to go back to work full time. All these things I have been holding onto so tightly, they have been my reason to get out of bed everyday and with my transplant looming they were within my grasp. I could almost touch it and the happiness this created was indescribable. They were mine for the taking when the myeloma was asleep.

Unfortunately, nobody told My Myeloma this…

Today, I discovered that I will not be having my transplant on the 27 March. I do not know when I am going to have my transplant or indeed if I am going to have a transplant. I have been so focused on resuming my life that I had forgotten about my paraprotein. I have not felt this well since before my diagnosis and that also made me forget about my paraprotein level. I do not think that after today, I will be forgetting about my paraprotein level anytime soon. In January it had plateaued, but last week, it apparently had a windfall and jumped back up to 26. This means no transplant. This means there is no end in sight. This means I am back to where I was in October. I thought I had been progressing, but in reality I have just been treading water.

I do not know what to do. It feels like my diagnosis all over again. I am to start a whole new course of treatment, but that cannot start until at least next week because my neutrophil count is low and I have a suspected infection. My new treatment is going to last at least four months and then… Who knows? There is no end. It just goes on and on and on. I am constantly trying to come to terms with My Myeloma but every time I reconcile myself to my reality, it comes along and fucks things up some more. It’s never going to end.

I don’t deserve this. My loved ones don’t deserve this. I have been poked and prodded and had endless amounts of blood removed from my body. Hell, today, they took out a bit of my bone. I have taken drugs that have made me ill and made me lose my hair. I have done everything that I was supposed to have done and still it is not working.

There really are no words.

I have no idea how I am going to get out of bed tomorrow… but the thing is, I know I will and for the time being, that is all I can do. Get out of bed and don’t give in. I am not ready to give in. I can’t.

EJB x

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