Tag Archives: Paraprotein

Six Weeks

It’s been two months since I last published a blog and let me tell you this, it has been quite the two months. After having this wretched disease for over five years, I thought little would surprise me. Well, I expected the whole looming death part to have a different trajectory to the routine I am used to, but as I said, I expected that to be slightly different. I never considered what the steps will look like getting from the relapse stage , to the end of the line stage. I always assumed it’d be easy but increasingly, I feel I might have been far too optimistic.
Somehow, in five years, I had settled into an uneasy routine with My Myeloma. It’s quite simple really, I would have some sort of treatment, which would work for a bit, then it would fail, then the Medically Trained People would somehow magic up another treatment for me to start, and thus the cycle would start again. 
I had five years of this. Don’t get me wrong, some horrible things happened along the way; it shouldn’t make the list, but losing my hair is still up there in the shitty events. I didn’t really enjoy any of my transplants and I definitely did not enjoy the time I had to spend five days in St Bart’s because I caught Influenza B. On the plus side, I thoroughly appreciated any drug regime that could be taken at home. I had a few of those.
What am I saying, all of that is in the past? If the last two months have taught me anything, and I am still trying to decipher exactly what further lessons I needed to learn by the age of 33 about my cancer, is, that Myeloma is a load of fucking shit that if there were a hell, it should be confined to purgatory trapped under a full, infected bed pan, never to bother nice (even horrible) individuals again. Oh yes, just to keep you up to date, I have also learnt about bed pans recently. And sick bowls. And those cardboard things that collect one’s waste by resting on the loo seat. I know it all.
On 7th September, I returned to UCLH for a clinic appointment. Prior to that I had found out that the trial at St Bart’s was no longer working and I had been experiencing what can only be described as extreme and unbearable pain that I had blamed on doing too much on holiday. The pain itself was predominantly in and around my right rib cage. 
As I had self diagnosed every relapse since 2012, I had spent about a month begging for some imaging. St Bart’s took no action, I would question if the staff knew my name, but thankfully UCLH did know my name and once they had the necessary images, man, did they take action.
I was admitted to UCLH immediately on the 7th September following an appointment, during which my family and I were told we were coming to the end of the line of treatment. Not only that, but there was also something wrong with my neck. I say ‘something’ because I think it took me well over a week to get my head round what a compression on one of the C vertebrae meant. I don’t recommend it. I don’t recommend developing a mass that pushes through your rib cage either, Alien (or at least that’s how I like to picture it) style. It cannot be sugarcoated. I entered that hospital with Mamma Jones and Big Sister in a bad way. 

And that bad way only worsened over the next six, that’s right, SIX weeks…

I don’t even know where to start. If you are independent, like to toilet alone and enjoy walking around, I’d say what followed would be your worst nightmare. It was mine. 

You may have deduced that not all was or is well with my spine. Due to the compression and the location of it, I arrived at my bed to be told that I was no longer permitted to walk. As in, no walking at all. Not only was I not allowed to walk but if I wanted or needed to be moved in my bed, I would have to be rolled by four Medically Trained People. My head and neck, could not be elevated anymore than 30 degrees. Three weeks later, this changed to 40 degrees and the news that I could roll myself, but by this point, the damage to my ego had already been done. Not to mention the damage to my legs for not walking for three weeks.
Despite being in denial about it, shitting is a necessity that eventually cannot be avoided. The day I could not avoid it was Day 11 in hospital when there were only male nurses available. I’m a 21st Century Woman, so I went ahead and let the team of four roll me onto a bed pan. I did not say anything when they had to roll me again to clean my bum. Nor did I say anything the next day, during one of my five daily bedsore checks, when a different Medically Trained person discovered a lump of faeces stuck in my bottom from the previous day. 

That was a low point.
Washing myself alone, was and remains impossible and for the duration of my stay, washes were restricted to hand towel baths in my hospital bed. If I was lucky, the Medically Trained Person cleaning my nether regions might have even shut the window to my room for some privacy. Due to staff shortages, during the last week of my stay, no washes were offered and I went a week without being cleaned. Needless to say, washing hair is extremely difficult and something that has happened twice between the 7 September and now.
Thankfully, due to what I like to call ‘performance issues’ I was given a catheter for the first three-four weeks of my stay. After that, I relied on my good old pelvic floor muscles to stop me from soiling myself. How can that be when you cannot walk, I hear you ponder? The answer is long, boring, excrutiatingly painful and another blog post. In the interim however, you just need to know that I have a full back brace, handcrafted to fit my body and imagined perter boobs, which I am allowed to wear to mobilise. 
…………………………………………………………….

This really is a story of never ending gibberish. Maybe grab a cup of tea. Have a wee break. I’d have one with you but my mouth is currently tainted by the delectable taste of 60 mg of steroids per week, so I am only able to stomach the taste of fruit juice. 

Where was I? Right, my health. In addition to the bony stuff, the really smart Medically Trained People had to find out what was wrong with me and if there was anything that could be done about it. This period felt like it would never end, with the feedback I was getting changing nearly everyday. I’m not going to regurgitate all of it, just trust me when I say it was very confusing and everyday resulted in me hysterically crying and Big Sister getting angry. 
I lost count of how many CTs, MRIs, ultrasounds and x-rays I had, but I know it was a lot. It was not uncommon to be collected by the porters, without any clue where I was going or why. I knew where they were taking me on week one, when I had five fractions of radiotherapy to heal my ribs, but as for the rest, it was not like I was in the strongest position to argue or question. I simply did.
Things went downhill relatively quickly. By Day 4 I had tested positive for Paraflu, which gave me a chest infection and resulted in me being relocated to an isolated room on a ward where the staff are nice, but significantly understaffed. One night, I rang my bell for 2.5 hours before I saw a nurse. On the plus side, it meant that I had my own room with a nice view over London. A bonus when you consider the fact that the woman opposite me on the shared ward addressed me as ‘Emily’ and wished me well. 
The hardest part of having the lurgy was that I did not see somebody without a mask on for five weeks. Talk about dehumanised. 
The chest infection persisted, so for extra buoyancy, I also developed sickness and diarrhoea and a temperature. It was lush. 

Notice how I am yet to mention My Myeloma? There’s a reason. My Myeloma failed to behave in the manner of which I have become accustomed. For the first time since I was diagnosed with the wretched beast, I was afraid of it. It wasn’t behaving how I have known it to behave. My paraprotein was the highest it had ever been, and no matter what drugs were tried or the volume of fluid pumped into me, my calcium would not shift below 3.0.

And still I carried on. It may be the biggest test of my willpower and personal strength (because I really have no meaningful life until I am rid of the brace), but I unequivocally told the Medically Trained People that I am not ready to give up with my life yet. As long as the treatment maintains a reasonable balance between quality of life and those dastardly side effects, count me in. Sign me up.

I’m not ready to die yet.

Unfortunately, we soon ended up spending some time thinking about my death. I completed my will and paid for my funeral. Once I was fortunate enough to be on a reasonable treatment regimen, I suffered from what I now believe to be called an Acute Kidney Injury. At the time, it was badged as something far graver than that. I cried for what felt like days. I got so angry with My Myeloma, I told it I hated it. I begged for a reprieve, identifying many people other than myself who deserved the award for ‘Most Deserved Recipient Of The Most Stubborn Myeloma in This Fair Land.’ I really am not saying that other people deserve this illness; I was just surprised to learn that I had not come to terms with the fact I have it. Death seemed so much closer than before I walked into clinic on the 7th September. I don’t know when it will come and that’s the scariest part. How long is my piece of string?
My need for tears grew when I was taken off my morphine, which I had taken in slow release form everyday for five years. There were nightmares and ticks, to accompany my sickness and diarrhoea. I won’t lie; it was a tough, sleepless few days.
Do not fear, I will not prolong this anymore than I need to. They require near constant testing, but for the moment, my kidneys are behaving. It took a week or so for them to turn around. For how long they’ll stay in this state, only time will tell…

Six weeks after I entered UCLH, on 19 October, after a lot of pushing from my family, I was discharged. Gone were the at least daily bloods, out with the cannula resulting in the constant beeping of unanswered alarms. Goodbye to the four hourly observations, even at 3am. Welcome to sudden and ill prepared loneliness with an absent of nurses. So long institutionalised regime. Hello privacy. After six weeks, I am to fend for myself once more. 
Just between us friends; It’s fucking terrifying.

The view from my hospital window

EJB x
P.S. New treatment regime (Velcade twice weekly for three weeks;20mg Dexamethasone the day before, of and after Velcade; Veneoclax eight pills daily

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It’s Supposed To Be A Marathon Not A Sprint

The month of August is the one month where I am guarenteed to feel nostalgic about my life pre and post My Myeloma. I might have such thoughts at other times of the year, but these usually occur when I am in some sort of drug and/of fear induced melancholy. August however, is different and this August has been more so.

August marks the anniversary of my diagnosis, my Cancerversary if you will. This year it was my five years Cancerversary. Not only do I get warm and bleak feelings about my once able body in the run up to my diagnosis. I am reminded of the stats. I am reminded of the stats I was told on the 21 August that I was then quickly told to forget about. ‘Survival rate is about 10 years, but this may be different for you because of your age’. I have had other stats thrown at me in the five years since, usually at the start of each treatment and with each treatment, My Body has come up wanting. 

There are several important dates in August; admittance to UCLH on the 14th,preliminary diagnosis on the 17th, formal diagnosis on 21st, kyphoplasty on the 24th and treatment commencing on 28th; each are packed full of memories.  This summer, I have found the memories on these dates amplified. Maybe it is something about five years and the fact that anniversaries are usually celebrated in fives. Maybe it is because I have felt my current treatment fail leading to the constant whirl of long forgotten stats and the big question that is , will I make it to the next big anniversary? Try as I might, I cannot forget about this. I even struggle to schedule a brain appointment for it, so I can lock it away again until the next scheduled appointment; my usual coping mechanism.

Every year since the cement was inserted into my L4, I have had to complete a survey about my health. What is that but a ticking clock counting down to… something? This year, the Medically Trained Person at the end of the phone said to me ‘don’t worry, next year is the last year we have to do this’. I responded, quite seriously with ‘good, that gives me something to aim towards. I hope I get to speak to you next year’. 

Some people may call these thoughts unhelpful and morbid, but I call them realistic. To me, not talking about my death, doesn’t make the chance of it less so. Avoiding such talk just makes me feel more isolated than my body is currently making me. I’m do not feel in anyway ready to kick that bucket, but I am realistic to the fact that in the five years I have had myeloma, I have had three failed transplants, multiple failed treatments and two, yes TWO failed trials. Yesterday, I was informed what my aching back had been telling me for weeks, that the Daratumamab trial had failed. I was taken off it immediately, and today I shall return to my home from home of UCLH, with the hope that they can pull something else out of the hat.

I think the fact that it was August has made me hypersensitive to any changes in my body, because those changes mirrored to some extent what I felt all the way back in the Summer of 2012. August 2017 is not the first time I have been made bedbound with a sore back. The difference now is that I know what is causing my sore back now, but I do not know the extent of the whys it if the damage is permanent. Nor is it the first time I have had high calcium, as I was told I had a fortnight ago. I was admitted to hospital in 2012 with high calcium. I have a constant sense of  déjà vu, mostly concentrated in my belly of worry. The difference? I no longer have the naivety and hope I had at the end of August 2012 that carried me along for years. 

Today, I feel like my chances of survival are dwindling. 
Three weeks ago, I turned on my television to find what the BBC were billing as a second Super Saturday. I had tuned into the athletics and believe it or not, a sporting even where people are at the peak of their physical fitness reminds me that I am not. As strange as it sounds, I feel like my diagnosis and thus My Myeloma by default is intertwined with the recent history of the sport. 

During the first fortnight of August 2012, I, like most of the country was glued to the London 2012 Olympics. I was sick at this point, but I did not know why. I recall Mamma Jones telling me on Day 1 of the Olympics that I looked grey and weak. I didn’t believe her, all I knew then was that I had a never experienced pain in my back before and that my GP could not diagnose it. Whilst I was waiting for an answer, I was prescribed a pain medication that made me slur, which led to me being signed off work. Well, removed against my will  from the office. So, I got to spend a fortnight, unable to move from my sofa (it wasn’t a sofa then but a really uncomfortable futon not suitable for grown ups), watching the fittest of the fittest take each other on in a myriad of activities. My memories of this time are fond ones. The irony that I was so enthralled by a sporting event pitched as the ultimate sporting event, whilst I was physically deteriorating day by day, does not escape me. The sane feelings emerged during the Paralympics, only with these games, I had the added jealousy of hearing how these athletes had managed to overcome adversity to be there. 

By the time the next Olympics and Paralympics rolled round last year, I knew that I was once again hooked. Watching as many events as possible was akin to torture but a torture I had welcomed. The athletes wept and I wept. I wept because I felt their pain. I wept because I knew that I was long past the point of ever being able to run anywhere let alone complete  a marathon. I wept because I knew I could not jump over a hurdle and I wept because I would never being able to learn to ride a bicycle around the corner let alone a Velodrome. When the games ended, I wept because I feared that I would not be alive for the next games in 2020. A feeling based on my then trajectory and not depression.

And so, with this year’s World Athletic Chanpionships being held in London, I was engulfed with myeloma based emotions once again. They have statistics too. For all the trying and all the rules I imposed on myself, this month had me thinking about my stats.

 I cannot help to being a different person now to the person I was when I was diagnosed in 2012. 

As scary as all the stats were back then, like I said earlier, I was naive to what they meant or could mean. I thought and hoped that I was told to pay no attention because I was going to be the medical marvel who could withstand every drug thrown at me and survive. I thought remission was a distinct years plus possibility. I believed I had many days ahead of living in me.  Now, in 2017, I think the stats have been long thrown out of the window and the best I can hope for is to exist day by day and try to fit some living, when my body allows, in there too.

There are moments in time when I feel tremendous guilt in how, after just five years, I could end up here. Should I not be pre-paying for my funeral? Is getting a will a sign of giving up rather than an act of mere financial sense. I know my nearest and dearest loathe me talking about the possibility of my death, and now I fear that  these once in a blue mood chats, honest chats, have tipped my hand. I hope not, and if push came to shove, I believe not, and yet I still have moments when I feel guiltily that I may have jinxed myself. Perhaps this is how a favourite athlete feels when the bomb out in the semi finals… 

I know in regard to my treatment that I  done everything I was supposed to do. More open to discussion is how I have mentally got through the last five years, but with regularly counselling sessions and honesty, I personally believe that I have done everything in my power to not be in the medical position I am in today. I renewed my latest cinema memberships by direct debit, not for the financial benefits but because I wanted to commit to being a member next year. For all years. Last week, I spent far too much money on bedding and other soft furnishings, and I spent that amount of money because I want to believe that I will need said bedding for a long time to come. A fortnight before that, I invested in a limited edition backpack, not just because I liked it, but because I needed something of good quality for all my future visits to the hospital. I have more examples, but essentially, I do things to show I am not ready to die. 

My treatment has failed. Again. As of March, I had exhausted traditional myeloma treatments. That’s a lot to take in and let’s face it, these are odds never in my favour. That was a failed attempt to  shoehorn a film quote into my blog, the odds are not in my favour. 

I was supposed to have at least ten years; the marathon. Five years might not exactly be the 100 metre sprint, but it’s no marathon. I want the marathon.

Let’s see what is offered to me today. Who knows, I might be reinstated.

EJB x

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Trial By Error? 

It has been a mere 16 weeks since I started my trial, which now consists of fortnightly doses of Daratumamab, steroids and an antihistamine. 

I say ‘mere’ in an attempt to justify the fact that there have been no blogs for nearly that entire period. On the one hand, mere sums it up nicely. The weeks and the doses have flown by and I have nothing to show for it. Looking back on it now, I feel like hardly any time has passed at all. 

On the other hand, I am telling major porkies, for there have been several periods during the last 16 weeks where I would have described the trial as relentlessy slow,  frustrating and exhausting. Perhaps if I shared these feelings with you at the time, I would made things just that little bit easier for me. I could have had mini data dumps on you and off loaded. I was just too tired to put words to keypad.

There is another reason too, one which came into my head only yesterday. On this trial, I am always waiting for something. Waiting for a result, waiting for a clinic appointment, waiting to see how I feel, waiting for a development. Waiting for something that gives me some sort of conclusion to these short stories about my life that I have decided to share with you. The conclusions have not come.  Thus, this has made me feel like any recent story I had to tell about my treatment (or anything else for that matter) would be incomplete. It worried that it would be more of a whinge about how much of my life is about waiting for something to happen with my treatment. At times, it feels like I am waiting for everything. I do not wish to come across that way. I like to think I am realistically positive, but can that be interpreted through my writing when my brain feels less able than it was when I started it. 

I like a story with a beginning, middle and and end, featuring as little ambiguity as possible. Don’t get me wrong, I do not need to be spoon fed (drugs permitting) and I can withstand the test of endurance that is a modern day Terrence Malick film, or in fact any film that is described by a film critic as ‘meditative’ but personally, I prefer just a little bit more clarity. And my life of late has been left severely wanting in that area.
So, here I am. There is no end to this story. All I can say to you is that I am not dead. Not yet. To those of you who were concerned that I may have passed to the other side, I thank you for thinking of me and for worrying about my absence. I am back. It does seem like a lot is going on at the moment, so I will have many a half finished tale to tell you. Fingers crossed.

Yesterday, the 17 August, marked my five year cancer anniversary. It was a loaded day. There is so much to remember about this period, and Daratumamab accounts for just 5% of the five years. You would think that I would know by now that I rarely get an end to my stories. Only occasionally have I been able to announce an end; the end of a chapter, or an end of volume have been my particular favourites. In reality, I know I should just face the facts that my life from now is ongoing, until it stops. And thus, I have no excuse to not share what is going on with you. You are, after all my cancer diary. 

Getting back to The Daratumamab, the one thing I do know, is that it has not been easy nor straight forward. Has any of my treatments? 

I flew into this treatment after a week’s radiotherapy and two weeks after I had received some very bad news. I was shell shocked and exhausted. I started the treated not knowing what it was and without fully understanding what the aim of the treatment is. I still don’t know and this is because every time it is explained to me, my painkillers kick in and my brain floats off into NeverNever Land.  I just know that being on the trial far outweighs the alternative of not, and for now, that’s okay with me. 

If I have learnt anything important since I started on the Daratumamab, besides from how to pronounce it, it’s that being on the trial is better than not being on it. It may be lonely, my body may be being used as a corporate guinea pig, but I don’t care. I am happy I am on the trial. Scratch that, I am grateful to be on the trial and everthing it encompasses far outweighs the negatives of being on a trial. The negatives by the way, are several, but in the grand scheme of my life, I can live with them. 

It would be really nice if I were now to talk you through each of my treatments. To build up a narrative, and to get you to feel even a little bit of what I feel every time I enter St Bartholomew’s Hospital and the times I am not there, lying in my bed thinking about it. That’s an awful lot of visits to go through and my short term memory is highly questionable, so I am not going to do that. Maybe I will one day. Maybe I will today. Right now however, I’m going to jump straight into what I assume you want to know and that is, how am I doing? 

How am I doing? 

Medically, I had to wait a long time for that to be answered. Two weeks ago, I did have an answer, but as of yesterday, I am right back into the Land of Worry, led by the President of Anxiety with her Cabinet of the Unknown. 

I did not have a clinic appointment for the first two cycles, which for cyber attack reasons, was nine weeks. Before that, I faithfully went in for my treatment each week, without knowing if the trial was doing anything. I went through various emotions during this period and in the end, I had decided that I would prefer to not have clinic appointments and only be informed if something bad was happening. Unfortunately, I didn’t actually tell any Medically Trained People this, so when I was telephoned on a Friday afternoon to say that I had to see The Big Prof on the following Monday morning, great panic ensued. Why now, I thought? Why with the greatest of haste? 

In my panic, I ignored the fact that the appointment marked the end of my weekly doses and the beginning of a new cycle. I also ignored the fact that I had not seen The Big Prof since I had walked into his office eleven weeks earlier and he made a space for me on his trial. I irrationally thought the worst.

This was sometime around the beginning of June and I can confirm that it was not the end. My paraprotein had remained stable throughout the nine weeks of treatment; it had not fallen and it had not risen. As a layman, I would have liked to hear that my paraprotein had gone down, but The Big Prof said he was happy with my results and signed me up for another cycle. I was to return to see him at the end of the next cycle, four weeks later. Apparently, that’s how frequently I should have been seeing him; at the end of each cycle. 

Something happened between my first clinic appointment and the second appointment. Well, a few things. I went on holiday, which meant having a month’s break between treatment and more importantly, pain returned to my body. That’s wrong too, I am not sure why I am unable to say what I mean on the first attempt. Pain is a multiple, but mostly managed daily experience. I do not have a day without pain. The word I omitted was ‘new’. New pain returned to my body. I have only experienced ‘new pain’ in the past when my disease was increasing. So, in this circumstance, I did what any sensible person would do who was desperate to go on holiday. I kept it a secret. I kept it a secret for two whole weeks before I blurted it out to Mamma Jones before we went on our holiday. I do not think I could have held it in any longer without inflicting serious mental health issues upon myself. 

Three to four weeks later, it was clinic time once again and if I thought I had been nervous at the start of June, I do not know what words could be used to describe what I was feeling on 2 August. It was not pretty. I had roped Mamma Jones into this one. I knew I could not do it alone and not surprisingly, my dear Mamma used up a day’s annual leave to come and support her baby during her appointment. I’m not ashamed to admit when I need my Mamma and she is always willing to oblige. I don’t want to gloat, but she does it so well. She even managed to keep me calm during the two hour wait in the most uncomfortable of uncomfortable waiting areas with her small talk and usually, small talk is not her forte. 

I had somehow managed to avoid thinking about it on holiday, despite increasingly bad pains, which just so happened to coincide with too much physical exertion. My holiday is another blog, but for this story you just need to know that I pushed my body to it’s limits, and beyond what I have medically been told I can do, so I could enjoy myself.  Experience it properly. By the end of the holiday, I could no longer put on my own shoes and socks. It was all worth it of course. The new pain, however in my right rib cage, once the excitement of the holiday was over, started to cause more pain than just the physical pain. 

So, having self diagnosed myself, we walked into the Medically Trained Person’s office to be told that everything was okay. I was shocked. My paraprotein still remained stable and despite putting on a bit of weight, I was clinically well. Mamma Jones and I left, I apologised to her for having to lose a day’s annual leave over nothing and I breathed a massive sigh of relief. Or four.

It was not long however, maybe even in a matter of hours, that I realised that I was predestined to have these feelings of anxiety repeated in the lead up to all future clinic appointments. I personally feel like I am hanging on to this trial by a thread, with what happens to me, being completely out of my control. When the bad thoughts creep into my head, I do quickly try and grasp on to a more positive spin. I want to stay on to the trail. I want to stay on and experince more of what this mortal coil (the right term for the state of the world at the moment) has to offer. I would say that in the circumstances, I am as positive as I can be. I’m realistic with it too, so when I feel something new in my body or I experience something that is not quite right, I am bound to worry. I am concerned that there are times that I can be too negative. I have discussed my behaviour with my counsellor and she says that pre clinic anxiety is perfectly normal and that acknowledging my fears is much healthier than behaving like I do not have cancer and I am not where I am in the long line of myeloma treatment.  I’ll take her diagnosis. 

It does feel natural now to worry about my success on the trial, given there isn’t that much out there, drug wise available to me. I can understand why I never truly feel comfortable too. Between appointments, I try to block as much of this out as possible. In my free time, I make sure I do as much as my body enables and that definitely goes someway to refill my faithful old ‘good cylinder’. Since my treatment moved to fortnightly, I have fully embraced getting a week back of my life, and I use it productively to live and not wallow. I have also lost the guilt I felt whilst my treatment was weekly, that I was not living enough. I was just too bloody tires 

In the last few weeks of the weekly doses, I really struggled. During the first few weeks, I had calculated that with treatment including steroids on a Thursday, steroids at home on a Friday and Saturday, followed by the inevitable crash on at least Saturday if not Sunday (and Monday), I was afforded two to three good days before I was back having my bloods done on a Wednesday morning. Then, everything started again on the Thursday. That two-three ‘good days’, days in which I was able to do something like a single trip to the cinema or a trip to the pub were invaluable but fleeting. A ‘good day’ did not equate to A full day. 

Gradually, as the weeks progressed, the number of ‘good days’ decreased and I longed for the fortnightly treatment. I had a week off treatment because my hospital was a victim of the NHS cyber attack, or whatever you wish to call it; I am no IT expert.  That week gave me a taste of what was achievable in a week off, and it felt like  freedom. Realistically, when you count the days I had appointments at UCLH too, I was down to one ‘good day’ by this point. As much as I enjoyed that week’s break, it made the remaining weeks feel like torture. Thank goodness for my Support Network.

I started receiving the Daratumamab fortnightly on the 14 June. To date, I have completed one and a half cycles, which equates to four doses. Technically, I do not require any more doses in this cycle but the next one, will not (hopefully) start for another 13 days. 

All of that nearly brings me up to date. Nearly. Yesterday was treatment day and it was five years and three days since I was admitted to another hospital with an elevated calcium level in my blood, leading to my diagnosis of multiple myeloma on 17 August 2012. Yesterday, I was told that I once again had an elevated calcium level. I am sure there are many medical reasons for this result, but to me, it answered my questions of why I have been experiencing the ‘new pain’, memories of five years ago fresh in my mind.  

The Medically Trained People I saw yesterday were ward based, which means they are not responsible for my overall treatment, if they know anything about my overall treatment at all. They approached the subject part calmly and part like a headless chickens.
The news of a high calcium level was met with my tears. The tears may not have come were it not for the anniversary, but I doubt it. I am so aware of failure that I probably would have blubbered like a baby regardless of the date or regardless of the cold way it was broken to me. “Are you on any supplements?” probably was not the best way to tell me, but that’s what happened so I just have to move on and acknowledge that the Medically Trained People working on St Bart’s daycare are extremely busy. 

As I wrote a few paragraphs ago, the result would answer why I had been experiencing the ‘new pain’ and generally why I have recently been feeling a little ‘off’. I asked  for my paraprotein result and I was told by the doctor that it had risen by a tiny amount. ‘Tiny’ was emphasised by a hand gesture and a closed eye. I asked for the actual figure and it had risen by six based on the bloods taken on 2 August. Is an increase of six tiny? I would have said it was, but then, I am not medically trained. 

So, where does this leave me now, does this story have an ending? In a word, or in four words, I do not know. Yesterday it meant receiving two large bags of fluids, which has left me peeing practically non-stop since. In terms of my long term health?  I do know is still my answer. I will have to wait for my next clinic appointment on 30 August. A clinic appointment where they will thankfully not be working on month old results. I know it will be a clinic appointment where my anxiety levels will once again go sky high. I will try and live next week, but I doubt the next clinic appointment will be far from my mind. 

Last week, I told various people in an attempt to justify my feelings about my treatment and life in general, that I lived month by month. I strongly, most adamantly believe this to be true. It’s like waiting for scraps, accept just with higher consequences…

So, this blog has now come to an end.  Is there an ending? I hope it is not the start of one. 

EJB x

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My Finest Hour

Forgive me. Seriously, in the words of Bryan Adams ‘please forgive me, I know not what I do’. Every time somebody has asked me recently if I was done with my blog, it strengthened my resolve to complete a blog.  I am far from finished with the blog; that was clear. What was not clear, was how I was going to rip off the gargantuan plaster covering my keyboard and get my thoughts to screen after such a long break and such a massive development. I know I have been neglecting this blog, but do not think I have not been thinking about it. Every other day I look at the WordPress app on my phone, a reminder of my world and I challenge myself to finish a blog that day. Clearly that failed. I get distracted. I probably had to wash and focus on my fluid intake. I am all so easily distracted. 

Where was I? Yes, the story I am eventually going to to tell is far from being hot of the press. In terms of speed, if I were a missionary in Africa in at the start of WW1 writing home to tell my family I had fallen in love with Humphrey Bogart, the news of said union would probably have found its way to my family long before I could find the words to explain the last few months of my life. 

In my defence and I have a big one, the last few months have been an exhausting and confusing blur. Contrary to what it may look like, I have very limited free time. My main priority has had to be me working out how I feel and how I want to hold myself, which is closely followed by doing daily tasks like washing, eating and forming sentences. No mean feat, all things considered. 

To produce something, something not soaked in self pity and embarrassment, it was impossible for me to immediately put all of this in my blog. Please don’t misinterpret me, I have a lot of words in my arsenal, I just do not seem to have the capacity to put them into any form of working order with a hint of wit. My Myeloma has dumbed me down. I have had a strong  will to write it, but at each start attempt, if I managed to get any  further then the first sentence by inner monologue would start  singing a tune of my own creation called “Blah” or I would want to play at Candy Crush and think of nothing. The words would the be lost and more often than not, I then fell asleep. I would then wake, I may be sick and then the cycle starts all over again. It’s an invisible pressure that only I see. I am all too  aware that I will get a crispy clear clarity once my words are published out in the Internet ether, but it’s just being able to get in there…

So yes, your forgiveness is something I ask for. I now recommend that you buckle in tight for this is going to be a long one, for this, all of this, has been anything but my finest hour. 

My last blog post was a boast, it was not even my boast, it was a boast made by a Medically Trained Person. My life was on track, I’m not sure what track but I was moving in a direction with less drugs, regular stools and finances. I had trepidatiously allowed myself to think more than a month a head. I was moving in a direction that excited me, secretly hoping for and  releasing my grip on the thought that My Myeloma was never far away…

As it turns out, I was not far away. Some time after the ‘sweet spot’ comment, I went to St Bart’s for a clinic appointment that I thought nothing of other than my attendance was a requirement. I had become comfortable and my guard was down. Imagine my horror then, when after a lengthy silence and grimaces of concern, the Medicaly Trained Person told me that after months and months of nothing, I had a paraprotein of 4. I don’t really remember what happened after that. I know we discussed scenarios and she tried to but a positive spin on it, but I knew there was only one direction for this development and it was not an error on the test. I had felt it in my bones for weeks but I had been reassured that my new pain was nothing to worry about.

In that morning, I did not cry. I stopped talking. I had one desire after that appointment and one desire only, and that was to get home. Unfortunately, I had to queue for an eternity at phlebotomy and then at the pharmacy before I  was allowed to go home. By the pharmacy, my tears were involuntarily coming and it remained that way for several hours. By the time I had walked in my front door and tried to get the words out to Housemate, I was on the floor. The guard was truly down.

All the fear I had about this being the worst relapse I would ever have, the relapse after the hit and hope of allograft, came out of me that late afternoon on my hallway floor and then in my lounge  and I have been dealing with fact ever since. 

It’s Failure. I feel like it is one big failure. I need to be absolutely clear on this point, the fault is not my donor’s, My Big Sistee’s. She did everything she should have done and more, my body just failed me.I feel like I failed her and everybody else who was hoping for a happier ending for me. I even feel like I failed the people not wishing me well. Trust me when j say that this is not hyperbole; I  was and remain devasted. 

The weeks that followed were bad. I had slipped deep into a black hole. It was the deepest, darkest pit of a black hole that I tried to keep to myself. I was so embarrassed by this happening once again, dominating lives once again,  that bar a handful of people, I kept all developments to myself. As well as worrying about losing my life, I feared this would be a development that would lead me to losing people. I have to be in bed by 09.00pm for goodness sake and I cancel my plans all the time. 

I had to wait for what felt like weeks, but really it was only a matter of days, to find out how bad it all was. I fixed my thoughts on it spreading, questioning why my pain had increased so dramatically, so quickly, self diagnosing secondary cancers with aplomb, and then plotted what the next steps would be, all without talking to a Medically Trained Person. The 2016 I had envisaged for myself was quickly slipping away from my grasp. 

For the first time since all this started over four years ago, I asked myself whether it was all worth it. I questioned whether I wanted any treatment at all. I didn’t know what my treatment would be. As far as I was concerened, in my darkest thoughts, I was on a one way track to palliative care. To add just that extra bit of sweet icing to the cake, I was also managing a fast deterioration of my bones. The pain was constant and restrictive;  and  included no bending, assistance required getting out of bed and off the toilet and no picnics to name but a few. I still worry about travelling long distances along in case I get too tired. I have once again lost my independence and I didn’t feel like I could share it with anybody. It was too sad.

I couldn’t talk to anybody about this. Perhaps the scariest thing of all were my thoughts about how I would die both naturally and unnaturally, as I tried to decide which option would be best. In those never ending says, all I could see for my life  was the at some point soon, not too far away it would end. Perhaps you can understand why I did not want to blog about this. Counselling, lots of counselling had to come first. 

I have always been realistic when it comes to my treatment, but I dropped my guard when I heard the sweet words of the ‘sweet spot’. There is no way of knowing if I would have handled it all better if I had been better prepared. If, during bouts of down time, I had not allowed myself to day dream about usual 32 year old stuff, maybe not the babies for I am a realist, but I would dream about independence, love (I’m talk under-the-covers-kind) and just living. I thought and planned for a life where I was not just going through the motions of my drug regimen. 

I could not then and still can I not see how I can reconcile this with relapsing. All my peers are moving in one direction, their direction whilst I feel like a am treading water until the day I am told that the Medically Trained People can do no more. There are times when I feel I am  the saddest, poorest spinster, adult child that there ever has been. I know that the more drugs I take the harder it will be to keep hold of my former self. There will be more staring into space as I try to follow a conversation and more Friday night’s out longing for my bed by 7.30pm, afraid to tell my friends that I am struggling to hear what they are saying.

All the time I was fighting the peak of battle in my head, I was being poked and prodded and then waiting for the Medical Trained People to give me the low down. To be precise, give Mamma Jones or Housemate the lowdown; I was in no fit state to hear it myself. There was too much waiting. I was in what can only politely be described as a heightened sense of anxiety. Looking back, it is a wonder I held it together as well as I did. Potentially, I thought that each test would show  that I was on a priority boarding ticket to the kicked bucket, but alas, that was not the case. My biopsy result did not have any active cancel cells in it, which even my brain worked out was better news than cancer being present. My scan did show new disease in my pelvis, both hips, both arms, both shoulder blades my ribs and in my cervical spine, but as far as I know, there was nothing requiring urgent attention. I have been told to be very careful, which means no lifting, very limited walking and no picnics. I could add more to the list, but I conscious of my word count. Just imagine an even bigger loss of independence.

I mean no disrespect when I say that the only  good thing to come from all of this is my transfer back to UCLH. The reason for the transfer is related to drug funding. One should never underestimate the benefit of being able to email a Medically Trained Person and have them respond to you and make you feel worthwhile. I feel safe at UCLH. I emailed the team at UCLH to inform them of my relapse and do you know how long it was before they had phoned me to see if I was coping? 15 minutes. That makes all the difference to me (KEEP OUR NHS ❤️!).

We now quickly and smoothly enter the next phase in my treatment. I like to call it the brain altering, stomach churning, sick phase or to put it more simply, The Drug Phrase. I have limited say on my treatment and I am happy with this. I trust my Doctors to prescribe me the right course of treatment. That is not to say that they have not been  without their teething problems. Did I mention a propensity to vomit? 

I am currently on a course of oral chemotherapy supported by a four weekly dose of Zometa for my bones. I am on a daily tablet of Revlimid, a weekly tablet called Ixazomib, which is basically an oral form of the Cilit Bang I was on in 2013-14, all washed down a healthy dose of Dexamethasone or steroids to you and me. I had increased my MST to 120mg twice a day to manage the pain, but became so constipated, I could not eat and the side effects became worse than the pain itself. Got it? With my supporting meds included, I am currently on between 24-40 pills a day. My first cycle was intolerable. I got into bed on a Monday and walked out of it a fortnight later and 8kg lighter. The following cycle was easier to bear, but nothing can remove fatigue as the unpredictable ruler of my life.

For the unitiated reader, the fatigue I have with chemotherapy goes far and beyond me feeling a little tired. At it’s worst, I cannot move, I cannot sleep or I oversleep, I fall asleep with the cooker on, showering takes two hours due to rests breaks and I have no capacity for a challenge. A slight problem to you, is a huge, gigantic issue for me. I once earned a fairly respectable BA and last week, I spent at least 10 hours fretting about how I would zip up a dress in a hotel. As a consequence I increasingly find myself going from docile to dogged in a matter of seconds. My fatigue gives me anywhere from 30 minutes to four hours of ‘good hours a day before I have to crawl back on my bed or the sofa. The beautiful part is that I cannot predict when or where it is going to hit.

I could go on and on about my recent experiences and do not worry, I will. I have now brown the seal. I already have a fairly detailed analysis of my bowel movement coming your way soon. For now however, I will end this blog. 

I will however say this, the day I started my treatment, the first day I took my new regimen I had no doubt in my head that I was going the right thing.  There was no doubt. I felt empowered. If I have taken one thing away this last four years it is that my illness is not just about me. I do not know what the future holds, but I know that I am not yet ready to let things happen without me. There will be days when I will doubt this, the feelings of ‘woe is me’ are inevitable and healthy. For me, right now, I am glad I was just given had the opportunity to regurgitate last night’s dinner. I am glad that I am likely to spend all day in bed feeling like I have been hit over the head with a sack of potatoes. I’m not glad about all of this because nothing remotely fun is going to happen with my day. I am glad because at some point in my near future, I will be able to do something worthwhile and right now, that is the only thing I can ask for.

EJB x

P.S. For all those myeloma sufferers out there; this works for me. This is my story. Please do not feel like I am telling you how to behave and do. You follow your path.

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The Frenzy

I am well known to be able to work myself into quite the frenzy prior to my clinic appointments. My version of a frenzy anyway, most the time such a frenzy is something to be stewed upon in silence; that way I can pretend it is not a big deal. There are many factors that can heighten or lower my worries, but regardless of whatever they may be, there is always a level of anxiety before any appointment with a Medically Trained Person. It’s guaranteed and I believe that is why I require so much sleep after such an appointment.

Yesterday, my pre clinic appointment anxiety was particularly high. It had been brewing since last Friday and it is for this reason that I opted to wear a black top yesterday morning instead of the cream one I actually wanted to wear. Nobody needs to see back sweat through a silk cream blouse. I do not believe that is what a Marks and Spencer’s intended

The reasons for my worry, were as follows:

😁 I had a MRI scan on Tuesday, that I did not request, but was arranged because the Medically Trained People wished to see my progress since my relapse. In my mind, it is part of a conspiracy.

😁 Regarding the MRI scan, I was told at my last clinic appointment 28 days ago that I needed to have the scan before my next appointment so we could discuss my progress. Progress means change, at least I think it does.

😁 At my last clinic appointment, I was also told that my paraprotein had to get to 10 or below before I could have the referral to discuss my transplant options. After that appointment, the transplant would likely take place two months later. At that time, I thought my paraprotein level was 15. As in, years away from 10 or below.

😁 Last Friday, I found out that instead of plateauing, and in spite of being on reduced chemotherapy in October, my paraprotein level had fallen to 12 as of 23 October.

😁 Finding the letter with these results on my return from a trip to the hospital, made the excursion to UCLH for a simple blood test almost worthwhile. As the blood test also included a paraprotein test, it meant that there would be an up to date paraprotein level when I visited they hospital six days later, something that does not usually happen…

😁… Thus there was a chance, or I let myself believe that there was a chance that, that very result could be below 10. There was a chance that I could get that referral and by default, I would get some tangible put it in my diary progress.

Like any old pro, I spent most of my week trying not to think about what would be said at the appointment, whether it be good or bad, which in reality meant that I thought of mostly nothing else… Good and bad.

Upon arrival at the hospital yesterday, The phlebotomist took five tubes of blood instead of three. The conspiracy continues. As I checked in on the fourth floor before my urine sample, I noticed that there was a certain Medically Trained Person doing the clinic who we shall call, The Bad News Deliverer. 😁

As I sat patiently and waited for 95 minutes for my appointment, it became apparent that there were only two doctors running the clinic and the only one I knew was The Bad News Deliverer.

In a nutshell, the presence of The Bad News Deliverer + a long waiting time x everything else = 😁😁😁😁😁

I hid it well. I genuinely did, for The Bad News Deliverer noted when I sat down for my appointment that it is easy to forget the impact of myeloma on my life when I always come in for my appointments smiling.*

So, having monopolised my thoughts for much of the week, and I dare say the thoughts of the immediate Jones Clan, I can now say that the clinic appointment was anticlimactic. It was anticlimactic because the Bad News Deliverer did not deliver bad news, nor did he deliver any glimpse to the end of this limbo. What I got instead was a very normal clinic appointment, well apart from the start of it where one could have easily thought I was referring to myself in the egotistical third person. I was actually quoting somebody else talking about me whilst I was in my presence. It may also have come across as egotistical.

Emma just needed time to realise that that the behaviour and and comments from some people in her life were not acceptable and she needed to learn how to manage them; Emma uses CBT, well, she has developed her own version of CBT; Emma puts on a brave face, it is easy to forget that she has bad days’

Anyway, so yes, regarding my treatment I had nothing new to mention to mention. That’s a lie actually, I’m experiencing slight ‘bladder issues’, but I forgot to mention them because I was nervous. My bloods were fine and my paraprotein has reduced to nine.

Nine is less than 10!

I asked about the referral as discussed previously and the Bad News Deliverer said that he was not sure about it, so he would speak to the necessary colleagues and get back to me. I understand that this response is not his fault, but it was not one that provided me with the clarity I wanted, nor the one I thought I would get when I was once again in single figures, and thus my frustration will continue for at least another month.

Using my own version of CBT however, I have spent my time since the appointment seeing the bright side in what was discussed. Obviously, the main positive is that my pp continues to go down and for my body, I do not consider reductions of three to be a plateau. History says five cycles in, it’s actually good for me. Secondly, the MRI scan showed that there had been improvements since my previous scan and there was evidence that the radiotherapy had worked. I still have evidence of the disease, but I could have told you that every time I bend down, rollover, stand up or move. Lastly, I am telling myself something that I have learnt the hard way, it could have been worse and I should therefore be happy with that.

Yesterday then, I entered Cycle 6. Cycle 6 includes the full drug regime of which I have become accustomed. It’s not Groundhog Day; it’s progress. Yes, it is most definitely progress. At least, that is what it has to be.

EJB x

P.S. I am very aware that this whole Bad News Deliverer thing is irrational, and evidently not true. The person in question is a very nice human. I am working on this.

* Not blowing my own trumpet or nothing, but this came up because news got back to The Bad News Deliverer that the talk a fortnight ago with the Macmillan staff was well received. I’m playing down what he said because, like I said, I’m not one to blow my own trumpet. 🎺

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Ignorance is Bliss

I have been so focused on fixing my back pain, a pain which occasionally spreads to my neck and legs, that I have rarely thought about my paraprotein level. In addition, my current treatment is rather difficult, and now, three quarters of the way through my third cycle, there are still so many other, more immediate things to concern myself over. I have one clinic appointment every four weeks lasting about 15 minutes where I have the opportunity to discuss everything that I have experienced in the four weeks previous, and so, by the time it comes for me to ask how my paraprotein is doing, it has slipped my mind.

My neutrophil count for example has twice been at 0.85. A quick google search revealed that this means I am suffering from moderate neutropenia. As a consequence, I am now on weekly G-CSF injections to boast my immune system, and on daily watch for any changes to my body. It is a figure that comes from a Full Blood Count, which takes the Blood Taking People in the Cancer Centre 15 minutes to process. The paraprotein test takes a few days to return and thus, and result I get will always be out of date, and will almost always require a phone call if I wanted to know what it was.

At the start of Cycle 2, cyclophosphamide was added to my treatment cycle, which is something else that took up time key discussion time in my appointment. I also sensed during that appointment that if another form of chemotherapy was being added to my treatment, then I could not have done that well in Cycle 1. Of course, having thought about this in many of my alone hours, at that point, the Medically Trained People would not have had my results from the first treatment cycle. It did not stop me from wondering and worrying however, and that wondering and worrying led me to one conclusion; ignorance is bliss.

Three weeks ago at the end of Cycle 2, I was told by maybe my second favourite Medically Trained Person that my paraprotein had indeed reduced. It was at this point that I realised that I did not even know what I started my treatment with. On the 23 June, when I was told I had relapsed, it was 20 and I figured then that it did not matter what the figure was thereafter, all that mattered was that My Myeloma was active once more. By the time I started my treatment a week later, it had risen to 26. Halfway through my second cycle, the level had reduced to 18. When I was told this, I openly admitted that I had not thought about asking what the magic number was, and in response I was asked whether this was because I was afraid of the answer. That is a big question.

I think I was afraid of the answer. Not seeking the answer was a position I reached by default. If it was intentional, I did so subconsciously. I have experienced the excitement of a reducing paraprotein level followed by the plateau two times before, and logically, my previous experience is always in the back of my mind when I think about my illness and my future. The Medically Trained Person was pleased by my results and said that I could soon be at a partial response. Every part of my being wants to get to a partial response soon, but I fear history repeating itself. I do not need that sort of negativity, so what I had actually done, inadvertently, is not consider it all. I get up everyday, I take my drugs three times a day and I stay in the flat when I need to stay in the flat in order to save my energy. I do not want to spend the next however many months, crossing my fingers reliving the feeling of getting my A Level results, worst still, the disappointment of my GCSE results.

I learnt from my previous treatments that living for that result at the end of each cycle, is not mentally healthy. It does not ease my mind. It does not send me to my happy place. All it does is make me worry and occasionally it makes me cry. I need to keep my head high and that too needs to be a priority in these darkish days of twilight. Of course, as much as I do not want to live for the numbers, I want the number to reduce as much as it needs to ten times more. The weight I put on this means that I cannot overthink it. What will be will be, right?

There is a difference between my current stance on following my paraprotein and negativity. I do not sit at home all day and all night long thinking that my treatment will fail, I just try not to think about it at all. Myeloma dominates my life at the moment, but I do not want to live for it. When I think about the numbers, no matter what it is, I will always want it to be lower and that does little for me and little for those around me who have to manage my disappointment.

At this point, all I need to know is that my treatment is working, and the sacrifices I am making, the monotony of each day is worth it because I am actually getting somewhere. I will not ask for anymore because I know that it is not realistic for me to ask for it, despite the people around me wishing to know the scores on the doors so they can measure my progress.

The initial excitement I had when I found out that my paraprotein had reduced soon past, when I realised the dangerous, all so familiar path it would take me down. I know it is dangerous because I know that the Medically Trained a People know what my results were at the end of the second cycle, and once again, I am afraid to find out what it is. I need to carry on thinking that all of this is worth it, nothing can contradict that, even the truth.

EJB x

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Volume II: Déjà Vu

As much as it may have appeared to you that my last blog was intentionally brief and not proof read, thus expressing my raw emotion and anger at my current situation, I can confirm that that was not my plan. As much as I like dramatic emphasis, I also like a beginning, a middle and an end, more than that however, I enjoy something that resembles a point. Let this be a lesson to all you bloggers, do not put your mobile phone into the pocket of your jeans, when you cannot walk straight, mid blog post. Intentional or not, it proved to be one of my most popular blog posts to date. Alas, maybe all my blog posts should be as punchy; I just have too many words in my head.

The initial intention when I started to write ‘Volume II’, was to provide an informative overview of the new treatment plan with a rousing, motivational ending full of cliches, about how I was going to fight and not flight. The ending of course, would have you applauding me for my never ending resolve, whilst saying to anybody you encounter that I am an incredibly brave, independent, woman worthy of an OBE. I suppose I have cut to the chase a bit, but at 05:00hrs in the morning, let me see what I can do.

And so, it starts all over again.

Yesterday [we are now talking about last Thursday], the plan, if you can call it a plan for me, was laid out before my eyes. It is with great pride that I was able to make it through the appointment, where it was confirmed to me that my life would once again be fatigue fuelled, without crying. I may have swallowed more than usual, but I did not cry. I saved the crying for Mamma Jones over our laksa soups, by myself on the bus and pretty much any other place I went last week.

So, after 60+ Velcade injections over my 22 month myeloma lifespan, we are no more. After two relapses and a transplant, it has been decided that my stomach can be spared of further marking and my limbs can hopefully, be spared of the pin and the needle. It’s going to be all about the tablets. Unlike my recent Velcade injections, there is nothing about the new treatment that can be considered maintenance; it is a big fat, steroid supported course of treatment.

For those of you in the myeloma-know, my treatment will not be that surprising. It consists of a four week cycle, with three weeks on and one week off of Revlimid and a pulse of steroids. The first cycle has not one, but two pulses of steroids. I will remind you all, because it is a fact burnt onto my worst nightmares, I do not get on well with the ‘roids. At it’s most pleasurable, dexamethasone gave me a beard. I do not like having a beard. The two drugs are supported by a whole host of other drugs, but I will share those with you when I collect them tomorrow. As a preview, I think I am returning to the territory of 30+ pills a day. Chalky.

I start the treatment on Wednesday. Tomorrow, I get to have my seventh bone marrow biopsy. I am looking forward to the cake I get to have after that deed is done. Although I know the start date, I have no idea how long I will be on the treatment for. I know that I have been given permission by the Medically Trained People to go on my booked holiday on 1 October, so one can assume that I will still be in treatment then. It’s a big black indefinite hole.

The treatment I will be on does not come with the hope of a prolonged remission. Thus, there will need to be a decision made in my months to come about me having an allograft. Two months after my autograft last year, I made that particular decision about the donor transplant and that decision was a go. All or nothing. When I made that decision, I did not know that I would have to think about playing my trump card so soon. It is a terrifying prospect.

There are going to be many a side effect coming my way, not least the return of the fuller beard. I am not kidding myself, there will be fatigue, so much frigging fatigue that looking at me will have my guests yawning. As a result of the fatigue and the chemical imbalance in my body, I imagine that I am going to have the odd moment of feeling overwhelmingly sad. I am preparing for these inevitabilities. The latter side effect will not be helped by the fact the treatment is all home based. I need daily interaction and the lack of it, was the hardest thing I found with VDT/VTD and my post transplant recovery. Without interaction, which intravenous meds afford, though nowhere near as much as living does, I fear myeloma will take over.

Having been through all this before, my sense of déjà vu tells me that I need to have sufficient home based activities to prevent the madness. That is just one part of my sanity preserving strategy. I know that I need to get better at asking people for help, even if that help is just company. Flip that coin however, and I also need to be able to say ‘no’. The above three things are far easier than me being able to eradicate the current guilt I have over my relapse. My relapse has let people down; it’s let me down. I am yet to start my treatment, but in the last three days, I have had to forgo two important events because of My Relapse. I hate that my will is not currently strong enough to fight my myeloma. I have never considered myself unreliable, unless the topic is defrosting the freezer or clearing the end cupboard, before. I hate it. In fact, hate does not even begin to cover it.

It has been a week since my world once again imploded. There have been too many emotions to list them, and too many tears to count them. I turned a corner on Thursday, but it would be naive of me to think that my negative thoughts have been banished from my week, let alone forever. It’s a journey and there are going to be highs and there are going to be several lows. I may lose all my money, I will lose my hair and I am going to fight to not lose any more of myself. It’s going to be shit. Monumentally, shit.

I know I am not ready to give up yet. My relapse puts me between a rock and a hard place, and the only option for me at this moment in time is to fight. I will fight for myself and I will fight for everybody in my support network. I cannot give up yet, I am only thirty years old. I still want to see me at forty, even now there is absolutely no chance of children. It’s an uphill battle and I am not ready to lose it yet. I cannot lose it yet.

And so, Dexamethasone and Revlimid, bring it on.

Bring it on, again.

EJB x

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I Give It A Year

Have you ever been to a wedding and attached an expiry date to the happy nuptials? If I had done this in my past, I would have almost always been wrong. Being wrong takes the guilt away from having the thoughts in the first place. Just over 11 months ago, I attached a multiple timescales to something that was not a wedding. The successful relationship between myeloma and my stem cell transplant, had me predicting the length of the union many times over. At my most positive, it would last so long that divorce was a fuzzy dot somewhere in my future. My worst nightmare was that it would not work, closely followed by it failing within a year of my transplant. My transplant was on 17 July 2013, and I have relapsed. There is no happy anniversary for me, just a fuzzy dot somewhere in my future where I may once again be as happy as I was a fortnight ago.

I am not ready for this yet. Last Thursday, when I was told that my paraprotein may have gone up, my overriding thought and one that I shared, was that I was not ready for it to come back yet. On Monday, when I received a phone call telling me that not only was my previous test correct in it’s finding of a measurable paraprotein, it had risen again to 20, I knew then that I still was not ready.

I feel like I put my life on hold. From August 2012 to November 2013, my life was on hold. I had a hold on my existence, to ensure that I did not burst. After November, when the wondrous ‘remission’ word was spoken , things did not return to my new normal overnight. It was hard, much harder than I thought or dreamed it to be. I had to teach myself how to exist in the real world all over again, with myeloma as my sidekick. I still had not perfected it, but from March, I would say that I finally started to enjoy trying to. I was in my infancy. I am not ready to let go of that yet. I have more to do and I have more to give. I cannot do these things when I am chowing down dexamethasone and having to treat shitting like an event again. One cannot seize the day when they are so heavily constipated that they vomit and soak their t-shirt in sweat that smells like oranges and onions.

I was two Velcade injections away from relative freedom, and even though I feared jinxing things, I was planning things. I was not just looking a month ahead. Hell, I have plans for October. October you gasp, positively crazy talk. Clearly. Closer than that, I had booked myself onto a weekly film course because I was able to retain more information than I have for a long time, I had more energy and most importantly, I thought it would be good for me to do something just for me. There are more things in between, but even if there was not a specific date in my diary, I looked forward to it, just because I could. Hell, I might have even had time to meet a gentleman fellow. I might have had time to grow somebody else’s egg in my belly. That all goes out the window now. Relapse means that at 30 years old, my life is on hold.

It’s just not long enough. I deserve more. I want more.

Of course, a relapse was an inevitability with myeloma and the treatment I had. I knew this, we all did. That does not take away my sadness at no longer being able to say to taxi drivers in an attempt to get a discount/free ride, ‘I have myeloma, a cancer, but I am currently in remission’. If they were lucky, or if I was talking to an acquaintance and delivering the Road Show, I might have added ‘I feel the best I could feel.’ It’s going to be a while before I can say that again. If I can say that again.

I had things to do. I have not even had time to write my blog about how I manage to hold down a full time job, how that makes me feel and the sacrifices I have had to make to do that. Nor have I blogged about how I was told off by the Medically Trained People for doing too much resulting in me reaching for the Oramorph. Apparently the increased and continuing pain was muscular, because My Myeloma was not active and thus there was not evidence to suggest something more sinister. That might not be the thinking now. The back and shoulder pain is funny, because the thinking was that I injured my shoulder because I forgot that I had myeloma and lifted a suitcase one too many times, when we all know that I should not lift anything. Maybe that is why this hurts so much, because I started to believe that I was more than my illness again. Well, for that sort of folly, myeloma has punched me in the face and stood on my nipple whilst wearing a stiletto heel.

I will find out tomorrow what my treatment is going to be. I’m pretty sure I have been here before. A friend yesterday said that given my previous experience with crappy myeloma, knowing what to expect is a benefit. She may be right of course, but right now I see fatigue, financial woes, steroid crashes, tin mouth, bruises, loneliness, frustration, constipation, insomnia and my bed. Lots and lots of time in my bed. I have previously crowed over escaping from my Bermuda Triangle; that was shortsighted.

The Support Network tell me that I am strong enough to do this again, even though I have not had enough time to replenish my good cylinder (yes that is making a comeback side by side with my paraprotein). I know that I will have to find the strength from somewhere, but finding the strength to exist and not live, when everybody else around you is living, is exhausting. It’s so, so exhausting. I do not want to lose myself in it. I do not know how to preserve me. I am not as strong as I was two years ago. Myeloma has already taken that away.

So then, here we are… Welcome to My Volume II. It’s going to be something, I just do not know what yet.

I suspect I am going to need more help this time around. And lipstick, lots and lots of lipstick.

💄💄💄

EJB x

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Trace

45, 36, 26, 29, 24, 23, 21, 20, 19, 18, 26, 21, 21, 20, 19, 8, 7, 5…

Since the 15 August 2012, when a junior Medically Trained Person told me I had an inaudible rare sort of paraprotein in blood, I have been plagued by it’s volume. For the first 12 months, it ruled my life and the monthly test result would determine my mood and resolve for the rest of the month. I lived and breathed that paraprotein level because so much of my life depended on it.

“We must get a partial response of 50% reduction.”

“It has to be below 20.”

“A complete response is 0, and it is unlikely you will get that on PADIMAC.”

“We think it has plateaued.”

“It’s 18, you can go to transplant.”

“I am afraid your paraprotein has increased and you will not be having your transplant. You will have another four months of treatment and then we will see”

“You are unlikely to have a level below 10 after your transplant.”

And so it went… I monitored it and everybody monitored it with me, using a plethora of emojis when it was good news and kisses when it was bad.

To preserve my stoicism, after so many dashed hopes, at some point last year, I told myself that I did not care what it was because I was tired of feeling like I was getting my A Level results every month. In the autumn, for the first time, my paraprotein level reached single figures and then I realised that I did care. The ability to live my life revolves around a figure I have no control over Once upon an infancy, I thought that reaching single figures would be easy, a piece of piss if you will, but for me, it quickly became evident that it would not be a piece of piss. It became out of my reach and the thought of not having a paraprotein level was not even a dream. It was a disappointment.

In recent months, I avoided asking what my paraprotein level was because I did not want to know that the life myeloma has carved out for me was over before I could take off the training wheels. I chose ignorance. Ignorance however, in case you wanted to try it, does come with an unhealthy amount of paranoia and self doubt; and that is how I have lived.

I had a doctor’s appointment recently. It was one of those situations where I had worked myself into silent hysterics prior, mostly because I was informed three days before it that I had to come in for an appointment and then as I waited, I saw The Senior Medically Trained Person and my palms started to sweat. At that moment, all I could think about was my paraprotein level. It had increased to be sure and I would be back to the drawing board.

That is not what happened.

In a matter of fact way, I was told that my current treatment was working because my bloods looked “very good”. Very good, I thought, I must be maintaining my status quo, and I satisfied with that despite struggling through my velcade injections every fortnight. Velcade and all it entails is the payoff. That said, a general comment was not sufficient for me, and seeing as I had made the effort to be half an hour late for my appointment, I used the opportunity to ask what my paraprotein level was and what do you know? I did not have one.

It did not and does not feel how I imagined it would. There are no fireworks in my head. Everyday continues to be an indescribable struggle full of sacrifices and walls, which yesterday’s day in bed would attest to. The overriding feeling I have and this latest development is relief, I feel like it buys me more time. More time to get used to the life myeloma has carved out for me.

Naturally, the Support Network were more enthusiastic about it than I. Emojis and kisses. They do not see that it changes nothing in terms of my daily routine, treatment and ability to see them. My favourite celebration was a fist bump accompanied by the acknowledgement that everyday will still be difficult.

That said, I did let myself smile. A few times.

🎉🎊🎉🎈🎁🎉🎊🎆
xxxxxxxxxxxxxxxxxxxx

EJB x

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Give Me A Seven

It is rare for me to get excited about anything myeloma related these days. Gone is the time when I had targets, hopes and dreams. I still have a diluted version of the last two I suppose, I just liked the sentence structure. My dry wit, however, does, if one is reaching, offer some evidence towards the statement above that I really do not get excited about anything myeloma related. I have been there, done that and got the stem cell.

So, imagine my surprise this morning when I did get excited. I did jump up and down in my bedroom and I did</em scream out loud. As a result I did procrastinate so much that I had to get a taxi into town; that is my excuse and I am sticking to it.

In this morning’s post I was pleased to receive the note of my last doctor’s appointment informing me that my paraprotein level is no longer 8. My paraprotein is now 7. Seven. It didn’t go up.

I know there is not much in a point. It doesn’t change my circumstances. I have previously talked myself into thinking that a point up or a point down in the world of paraprotein means very little.

That said, for today, I’m going to let myself have a little bit more hope than I did yesterday, because recently, not even in my dreams was I hitting a seven.

A seven.

EJB x

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