Tag Archives: Chemotherapy

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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Day 1, Take 2 – Part II

A Timeline:

07:00hrs – I wake up, once again, I have been waking up on and off for a few hours. At 07:00hrs, my bladder told me that I could not lie in bed anymore. 

07.05hrs – I returned to my bed and took my morning dose of medication including the one that sounds like a mountain retreat. I then dilly dally. 

07.30hrs – Despite my hairdresser’s recommendation to wash my hair every four days, I decide that a wash is completely necessary and I sneak into the shower before Housemate emerges from his room, so I cannot be told off for making him late for work. I’m sure you can work out what happens next, but for the sake of accuracy, I put on the first of my day’s outfits once I get out of the shower. 

08.10hrs – This is an approximation, but Housemate leaves for work. In the time before his departure, I change my outfit once and ask for his expert opinion. He does not offer an expert opinion, so I change out of the extravagant kimono and put a black shirt on over my jeans and body. I thought subtle and comfortable was probably for the best.

08.25hrs – Ocado arrive and I spend the next 15 minutes struggling to get my goods in to the fridge. Said fridge looks magical when I am done, I almost feel like a grown up. 

08.40hrs – I cook my porridge. I then eat my porridge. At this point, I think I have plenty of time and I am convinced I am going to leave as planned at 09.15hrs, to ensure I arrive at the hospital by 10.00hrs. I then decide to watch an episode of TOWIE. Forgive me for that.

09.15hrs – I am not ready to leave on time, but I have managed to locate a cardigan that has been missing for two days.

09.30hrs – I book my Uber, but somehow find the time to take a photo of Bruce.


09.46hrs – I find the time en route to share this wholly necessary piece of information.


09.55hrs – I arrive at the hospital, make my way up to the 7th floor and check in.

10.10hrs – A Medically Trained Person comes to collect me, takes me through to Bay 5 and shows me to my bed to the day. On my arrival, I unpack my bag. I plug in both my chargers, unpack my laptop, kindle and iPad, find a spot for EMan and hang up my cardigan and handbag. I also pull a chair over to create an extra table. I did all of this completely obvious to the fact that the nurse was waiting to do my observations. Despite knowing that I had hours to make myself comfortable, I just wanted to make myself at home right away. I needed order. I didn’t just want to make myself at home by the way…


The first of several obs were then taken. Do not worry, I am not going to share with you every time my obs were taken. That’s mainly because I did not keep track of how many times my obs were done. Just know that they were done on the hour, and then before and after each infusion or change in speed of said infusion. That is a lot of times for somebody to take my temperature, pulse, blood pressure and oxygen. 

10.45hrs – In goes the cannula. My concerted attempt to drink as much liquid as possible all morning, proved worthwhile. The cannula went in on the second attempt on the top of my right hand. Don’t worry, I did not take a photograph of this. I know some people can be squeamish around needles; thankfully, I am not one of them. 

11.23hrs – The pre drugs start. 


They consisted of one bag of Piriton followed by a flush, then an 8mg bag of Dexamethosone followed by a flush. Sometime after that, I then get a 12mg bag of Dexamthosone on the instruction from the pharmacy. Once again, this is followed by a flush. 

This all takes some time and delays the start of the main attraction.

12.43hrsIt starts!


Look at the size of that bag! To begin with, due to the possible side effects, the Daratumumab is given to me very slowly. It speeds up gradually throughout the day, but not for the first two hours.

13.30hrs – Lunch has arrived and I start to feel nauseous. I am also dizzy. I’m trying to fight it, but aware of the warnings that I should report any changes, I tell the Medically Trained People. They do my obs.

13.49hrs – By now, they have discovered that my oxygen is low, and I am given oxygen.


15.00hrs – My visitor leaves me and I am once again left to my own devices. Prior to her leaving, she is kind enough to collect my drugs from the pharmacy, which required three trips downstairs. The first trip was to put in the prescription, the second was to collect said prescription and the third was to pick up my morphine which she was not allowed to collect without ID.  Whilst she was gone, I took advantage of the bed next to me being empty. 


I spent the rest of the afternoon feeling exceptionally hungry. I also started to watch the bag, willing it to empty. 

16.30hrs – the Daratumumab was turned up to maximum speed; with still many, many hours to go. My Medically Trained Person reminded me that I had my laptop with tv programmes on to keep me occupied. I repeatedly promised to turn it on. 

17:00hrs – I am given more drugs to take home. The previous prescription collected by my friend was for my pain management, this prescription contained support medication for the trail. It included Dexamethosone tablets, which I am required to take for the two days after each infusion. 

17.30hrs – By this time, I had turned on my laptop, I really wasn’t paying any attention to it as you may be able to tell from the photograph below.


I now lose track of how many times I restart said programme. I was tired and hungry. All so very tired and hungry. Hunger was controlling my mind. 

18.31hrs – By this point, all the other patients are gone and I am still hungry. I give in to the hunger and do something I would not usually do. 


19.30hrs – More obs are done prior to this, but by this point, the Daratumumab infusion is  over. Finally. The drugs are inside me and there is nothing else to be done. Well, there are things to be done. The Medically Trained Person has things to record, more fluids to give me and obs to take. On a personally level,  I have to pee again. At this time, the sodium docusate I take every day has also decided to work. When sodium docusate works, I cannot deny it. As a result, I spend the next 15 minutes in the toilet. 

20.00hrs – The last obs are taken, I have packed up all my belongings and I am ready to go. The Medically Trained Person asks me how I feel and I respond with ‘tired’. She admits that I do look tired but complements me on the fact that my lipstick is still on. 

I leave, against medical wishes, but I feel confident that nothing is going to go wrong in the next 24 hours (or in the days after that).

20.06hrs – I get into my Uber and for the next 20 minutes, I have to listen to complete and utter drivel from the mouth of the driver. In then end, I explain that I cannot talk to him anymore because I have been having cancer treatment for the last 10 hours. He continues to talk. He gets 2 stars.

20.28hrs – I am Home!


I greet my lads and put my dinner on. I then get straight into my pyjamas. I also investigate the bags under my eyes, to see if I do truly look tired. I can confirm that I looked tired.


21:00hrs – I eat. In bed. I then take my medication.

02.05hrs – I wake up to go to the toilet and find my TV is still on. I appear to have fallen asleep during Masterchef. I turn the TV off and fall immediately back to sleep. 

And that my friends and people of the internet, was my day. You can tell that I became increasingly tired as the day progressed, as I stopped recording my day as accurately as I would have liked. I think I still show that it was an incredibly long day.

Until next time…

EJB x

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Day One, Take 2 – Part I

I woke up on Thursday morning in exactly the same way I woke up the previous day. I did everything I did on the Wednesday morning, right down to eating porridge for breakfast. – Quick interlude, I just let the dog out for a pee and it reminded me that there was a difference on Thursday morning, I had a supermarket delivery arrive between 08.00-09.00. It was due at a more reasonable time, but I had to change it because my treatment was postponed. You might think that this is an unnessary detail, but having a full fridge brings me so much joy. Anyway, back to my story –  If I was following my superstitious mind, I would have shaken the routine up a bit, but for reasons unknown, my brain had decided to behave; I was calm. I did not feel that nervous. I might have had a tiny, tiny bit of trepidation somewhere in my gut, but my predominant feeling was quite optimism. I just woke up wanting to get on with everything. In my flat that morning, I was more of a robot. That said, I did change my outfit twice and I asked Housemate whether I looked okay on both occasions and he responded with a sterotypical boy answer of ‘I don’t know’. I’m not sure why I was getting dressed up for the Daratumumab, I just needed to feel confident. Or at least fool myself that I felt  confident. I might have even fooled all of you.

Once again I felt the need to share my day on Instagram, it had two benefits. As well as sharing with strangers the glamourous and enviable life I lead, it also kept track of the day’s timeline, so I didn’t have to remember them for this blog. I’m thankful for that because it ended up being a long long day at the hospital. I say it ‘ended up’ being a long day, I always knew it was going to be a long day, I just didn’t compute the reality of it. 

If you count my waking hours it was an even longer day.  In terms of hours out of my house, I was out for 11 hours, and in the hospital for 10 of those. I didn’t even do rfar for my friends’ weddings. I woke up at 07.00 and past out at 22.30, so I was awake for 15.5 hours. I’m not normally awake for 15.5 hours and I am even more surprised that I managed to stay awake that long after having some IV Piriton. That would usually send me straight to sleep, but then it was followed by 20mg of Dexamethasone, so that probably counteracted the immediate need to snooze.

As you may have worked out by now, I got the Daratumumab. Pause for your applause. Despite having an hour and 20 minutes of pre meds before the big  infusion, I did, when I was in the seat for a brief moment begin to doubt that I would ever see the drug. Even when the Medically Trained Person told me that pharmacy had called her and said it was ready, I still had  doubts. Completely irrational doubts, but they were doubts all the same. When I eventually saw the bag and confirmed my name and date of birth I was excited. Internally, it was an internal excitement. When the bag was eventually hooked up to me, I sighed with relief. It was a theatrical sigh, but if was the only way I could think at the time, of commemorating the occasion. I was officially on the trial, and apart from the Medically Trained People, I was the only person to see it. 

I should add at this point that Mamma Jones felt (and probably still feels) terrible about not being able to accompany her baby girl for her big day of treatment. Mamma Jones just couldn’t get the day off of work, which I understood completely. Mamma Jones on the other hand felt guilty. I think she must have felt the guilt a lot because she was very apologetic on the Wednesday about not being able to come and then she phoned my twice on the Thursday to say she could come after work if I needed her.  People have to work, and I knew that my Mum would have been there for my first infusion if she could have been. It’s just one of those things, we planned family cover for the Wednesday, but as you know things changed at short notice.

I explained in my previous blog that Big Sister could not come to London for the big day, take two. The lack of family members present did have my two main female family members in a spin. Fortunately for me, there actually exists people who live in London who care about me, so when I found out I was going to be family-less, I contacted the London family and immediately I had a volunteer. I had a simple task for them, and that was, in addition to entertaining me for a period of the day, to bring me lunch. I had seen the hospital lunch the previous day and decided that just would not do. If I was going to be in the hospital all day, I needed to eat well. If in the process of bringing me lunch, my friend wanted to stay and talk with me a bit, then that was okay too. I understand that this offered my mother some reassurance. 

Whilst we are on the subject of food, I arrived at the hospital with a handful of cherry tomatoes, an apple and a flapjack. The flapjack was for emergencies. My friend was arriving at one, and in addition to my actually lunch of sushi (please do not complain to me about eating raw fish, my counts were fine, and I am adult) and a bowl of miso soup, I asked her to bring a punnet of tomatoes because the tomatoes I packed had disappeared into my mouth  by the time my infusion started. Despite a brief feeling of nausea, timed perfectly for the arrival of my food, I spent the rest of the day absolutely ravenous. It was fortunate for my waistline that I was attached to a drip and under such stringent monitoring, because I would have gone on a search for more food otherwise. I probably would have had one of the free sandwiches if they had done a late afternoon visit, such was my irrational hunger. As my stocks dwindled to nothing, I even had to lower myself to a custard cream and I hate a custard cream. You do not need to know, correction, I am unwilling to tell you what I had to eat when I got home. I need to maintain an air of elegant mystery. Next Thursday, I am going to have to rectify the hospital food situation. I am going to need a bigger bag. 

I had heard a lot about the reactions I could have on Daratumumab, which is one of the reason why I had to be monitored so closely. The other reason, I guess, is because it is a trial requirement. I know I started this paragraph talking about reactions, but I think I should just add here that I think I won the clinical trial nurse jackpot, I mean, if there was such a thing. My nurse was probably with me for 4-5 hours of my 10 hour day, and the biggest complement I could give was that I enjoyed her company. I also liked that she brought me drinks and made toilet jokes. Anyway, after yet another brief interlude to the narrative, I can confirm that I experienced no major side effects. 

If I had experienced any major side effects, I can confirm that the hospital was well prepared for them. They even had Mamma Jones and Big Sister’s contact numbers so they could keep them up to date if I became indisposed. I also had the nurses’ bell to hand and my Medically Trained Person’s phone number should anything change. I was well covered.

The only issues I had was some light dizziness lasting about half an hour shortly after the infusion started, which coincided with some nausea, which unfortunately coincided with the arrival of my lunch. My oxygen also went down, so I got to have extra oxygen shoved up my nose for good measure. As soon as I had the oxygen, the nausea and dizziness past and I was able to eat my feast, which if I am being perfectly honest, is what I cared about the most. 

Although I was there, on the same bed for hours, I must admit that the time until about 17.00 went by so quickly. From then on, it went slowly, but this tied in with all the patients in my bay going home, the cleaners cleaning around me and the sun go down. In the last three hours, it felt very quiet and lonely in that room, which is strange because I had spent most of the day mentally lambasting the other patients for making noise, especially the one, who at one point had six very loud visitors. I missed them all once they were gone.

I did not start watching my TV programmes until about 18.00 and even then, I only watched half an hour of one show, that I kept having to rewind because I was distracted by my phones or simply because I was tired and struggling to concentrate. I had to postpone Line of Duty because I was beginning to feel very tired and I felt that I would be unable to give it the attention it deserves. I will have to review my viewing choices before next week. Maybe Disney would be more suitable.

I really do not know how I managed to fill 10 hours of my day, when all I did was sit on a bed. A lot of my time was spent on my phone. I was inundated with messages from my friends and calls from my family, which when added to the two hour visit from a real life human friend meant that I felt well and truly supported. I received my weekly call from my UCLH CNS, a Medically Trained Person who always, I feel, goes above and beyond what is required from her when it comes to supporting me and for that, I am most grateful. I also wrote one of these, which takes more time to complete than you can imagine. On a more practical level, I was also very thankful for packing a phone charger.

The infusion bag was huge, and prior to receiving that, I received a bag of antihistamine, two bags of Dexamethosome, because the pharmacy changed my dose halfway through the first infusion (thus adding a 30 minute delay to my day). Each bag of drugs was followed by a flush. I should have, but I did not record the size of the Daratumumab bag, but just trust me when I say it contained a lot of liquid. On top of the liquid going through my veins, was the liquid going through my bladder. The Medically Trained People kept offering me more refills of water and top ups to my herbal tea. Plus, I had a clear soup for lunch. All this means one thing, and one thing only. I needed to go to the toilet a lot.

Going to the toilet whilst attached to an drip with a cannula in your dominant hand is no easy feat. It is especially difficult if you have aching bones and struggle to get on and off anything. The first time I went, I did not realise that the line was long enough for me to get off the left hand side of the bed, so I had to lift my legs, one by one and squeeze them between a gap mid chair. Such gymnastics was necessary because the table was attached to the bed, cutting the right hand side of the bed in half with a metal pole. Thank goodness two of my curtains were closed when I did this. On my return, I realised I could get on the bed from the left hand side, negating the need to negotiate the pole and more crucially, negating the need to look stupid.

The trial dictates that patients are monitored for two hours post infusion. My infusion ended at 19.00 hrs and as I had had no major side effects, I asked if I could leave at 20.00hrs. This was against medical recommendation, but I was hungry and tired, and the Medically Trained Person said she would not have left me leave early if she thought anything further was going to happen. And so, I left at 20.00hrs, got in an Uber and instructed Housemate to put the oven on, so I could heat my ready made cottage pie, which had arrived that morning.

There isn’t much more to tell you. I was absolutely exhausted yesterday and I do not know if this is because I was out of the flat for so long or because of the medication. I imagine it was a combination of the two. I was the sort of tired where every activity felt like a marathon. I was mortified to discover that I had incorrectly spelt ‘belatedly’ in a birthday card, by brain just wasn’t working properly.  Needless to say it was a flat day. I imagine that today too, is going to be a flat day. 
The reassuring thing, at least I find it reassuring, is that although I am still tired from my treatment, I know that I get to do it all over again next week. For those of you who are interested, I have to go in for tests next Wednesday morning, ahead of my treatment on Thursday. I imagine after a few more doses, my excitement will fade and Daratumumab, like every other drug I have taken will become routine. I just hope, with ever ounce (and there are a lot of them) of my being, that this treatment and this investment does what we hope it will do. 

EJB x

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10 Hours In London

Following my latest Bad News Day, I’m not sure if we can classify it as the Ultimate Bad News Day, but after whatever a fortnight ago was, things started to happen very quickly. Last Friday evening, when I had a chance to stop, I reflected that I could not believe so much had happened in a simple space of a week. As you can assume, it was a riveting conversation. A lot happened that week, but for this blog, I am only going to tell you about what happened on Monday 3 April. Firstly, it means you’ll have to read the following blogs and secondly, I enjoy the WordPress alerts that say ‘your stats are booming’. Well done, all 100 of you. I deserve more than 100 of you, but again, that’s not the purpose of this blog.

Mamma Jones and I departed Peterborough on the 10.08 train that day for an appointment at St Bartholomew’s Hospital at midday. At this point in time, I was not entirely sure why I was going to Bart’s. The last I heard was that I may have got into a trial at the hospital and I was going there to talk about it. Initially, I had thought that this appointment would take place a week later, but the hospital wanted me in as soon as possible and when you are dealing in possible clinical trial spaces, I was willing to do whatever the hospital wanted me to do. Even if that meant getting up early and getting a train to London, when all I wanted to do was rest my aching bones. 

The familiarity with returning to St Bart’s was overwhelming. The clinic I was attending started at 9am and my appointment was for midday. On a very practical level, this meant that waiting would be required as the clinic would have had three whole hours to run late prior to my arrival. 

The waiting room in the East Wing had gone unchanged. I don’t know why I was expecting it to have changed. I lie actually, in my absence they had upgraded from lukewarm jugs of water to a standalone water cooler that dispensed more lukewarm water. The room itself, still holds far too much heat and there are still insufficient seats to accommodate the number of people who attend that clinic. People seem to sit wherever they can find a ledge. It looks so untidy, with patients sat incredibly close together on plastic seats, facing various directions whilst other patients sit on the seats fashioned from oversized window ledges that are too deep to be sat on with any type of decorum. Wheelchair uses find space next to the window seats, but there is no designated spaces that would indicate an area where a wheelchair user has stopped on purpose rather than just finding themselves next to a plug in heater in the middle of a corridor. Needless to say, it is an environment that feels cramped and overbearing. My previous visit to Bart’s had been about a year before. Desperately trying not to moan, the oppressive nature of the room, and my imagined but fierce belief that plus ones would never give up seat to a young myeloma sufferer, immediately put me in a bad mood. 

I tried to read, I thought perhaps reading would make the wait seem more bearable. Not that I knew what I was waiting for. Reading proved to be impossible because that room carries sound that I could not escape from. Any conversation that did not originate from my lips on that day, was pure and utter, superficial nonsense. My attempts to read just encouraged me to look at the other patients and declare them evil for interrupting my novel. Housemate dropped by briefly during this time to deliver a much needed packet of Refreshers. They helped. But we were still waiting. 

Maybe I was being too dramatic in wondering why we had been summoned there. Logically, I knew I was there to discuss the trial and hopefully get on to said trial. I know what my problem was, I didn’t want to get in to see the Medically Trained Person only to be told that it was all a gigantic mistake, that I wasn’t on the trial and that I must have misunderstood something four days previously. This trial literally is my chance to prolong my life. I did not want to hear about any mistakes. . 

Irrational concerns about my hopes being dashed after nearly five years of having myeloma, are not so irrational. 

I was eventually called through at 1.25. It was time. Time for what though? We did not have a clue. 


Like I said, we did not know what to expect. Was I going to have to pass a number of tests? Was there a written word exam nobody told me about? Would the Medically Trained Person not put me on his trail if I started to have a hot flush and as a result of hot flush leave a damp mark on his chair? I just did not know. I was not privy to any of the discussions that led me to Bart’s. 

So, up the river without a paddle, I walked through the double doors, followed by another set of double doors until I reached a single door and knocked. The Medically Trained Professional opened that door and  in we went. 

Inside his office, ready to greet us was a Medically Trained Person I know well. He, my doctor throughout my last transplant, was smilin, actually smiling at me which made a refreshing change from the previous week’s tears. I am a simple woman and I appreciated the familiarity. I’m surprised he did not automatically call me ‘Em’, which had had started to do when I was last under his care. 

I would categorise what followed as informal. We did not have an in depth chat about the clinical trial (Daratumumab). I was told that there was around a 30% chance of it working. I reasoned that that 30% was better than trying nothing at all. The word ‘antibody’ was mentioned a few times but not enough that I actually understood why. Then, probably within five minutes of us entering, the Medically Trained Person signed a white piece of paper and said that was his consent for the trial. 

Could it be that without any blood tests, biopsies or an explanation, I was on the trial? Apparently so. Even now, I loathe to jinx it.

And with that, I think I expressed enormous gratitude, and then we were ushered out of the office with a few sheets of stapled white A4 paper containing a very important signature, and that was it. Well, it wasn’t quite it, we still had to go and see the trial nurse, but that was it for our time with the doctor. Clutching the consent form  and looking at my mother in disbelief, we made our way up to the seventh floor of the main building, otherwise known as the cancer centre. 

St Bart’s cancer centre, despite the view was just as foul as I remember. We did not get past the waiting area on our visit but that area was filthy. There was rubbish everywhere and unhappy people sitting amongst yet more plastic chairs waiting to be called through. I do not know if I imagined it, but I am sure there was actual rubbish littering the waiting area and mug rings decorating the tables. I did not imagine that the adjoining toilet I used, was soiled with stains all over the floor and toilet seat. How does this happen by 2pm in the afternoon? I know that people are sick, but really? What does it say when patients don’t respect their treatment area enough to keep it clean? I’m not going to answer that because I am very thankful to be transferring to Bart’s and I think it is a wonderful Hospital. 

This s a blog about how much I love St Bartholomew’s Hospital and not one where I highlight all of it’s faults. I really do love St Bart’s and I am pleased about being transferred there. Honest. Honestly. 

Amongst the debris, Mamma Jones and I read through the literature I had been given and then I signed my life away, consenting to everything they asked me to consent to. A skim read would be the correct description of what I did. I was beginning to get tired. Since I was diagnosed with Myeloma, I have consented to many things and I can confirm that there was nothing exceptional about this form. Let’s hope the subject matter proves to be exceptional, but the form itself? A form is a form is a form. 

After a few minutes, we met the Clinical Trial Nurse. Not that I am picky in anyway nor does she have massive metaphorical shoes to fill when it comes to making me feel comfortable with my care, but I approved. We discussed the practicalities of the trial and I handed over the stapled bits of A4. 

I was then weighed (dropping a full half kilogram from my morning’ weigh in), measured and my blood was taken. And that was it. I was sent home. Practicalities, like the start date of the trial were to be decided once my dates for radiotherapy had been confirmed.

Was that it? Was that all that was needed to get me onto a trial that has a 30% chance of prolonging my life? I do not not know what I expected. I did not even get the chance to express my gratitude to such an extent that it made everybody feel uncomfortable. I didn’t learn about the ins and outs of the trial. I just stipulated that I did not want a semi-permanent line and said I still wanted to be able to go on holiday. 

It’s now over a week since that appointment and I still do not want to do anything endanger my place on the trial. As the rest of our correspondence has been done over the phone or by email, I am afraid that they are going to discover something catastrophic. It doesn’t even need to be catastrophic, it could be something perfectly innocent that could effect my place on the trial. This week I almost took some extra steroids, and even those could have impacted on the trial. 

It cannot be taken away.

On the subject of steroids, no tale of our day in London would be fully complete if I did not tell you what happened after we left the hospital. By 3.45pm, I was absolutely ravenous. By that point I had been on a high dose of steroids for four days, we had missed lunch and I really was ravenous. Well, I was tired first, hungry second but I knew that if we fed the hunger, Mamma Jones would be accompanied by a much nicer me on our journey home. 

We went to a restaurant and I am most thankful that the restaurant was quiet, for I sat down and ate a starter of calamari followed by half a chicken and chips. Once I was finished with my chicken, I finished my mother’s. Mamma Jones’s chicken was not included in my half chicken tally. I couldn’t stop. The least said about this meal the better, but in short, I could not stop eating. Afterwards, we travelled to Kings Cross station where I indulged in yet another banana milkshake. Then, and there was a then, when we eventually arrived home at approximately 8.30pm, I had a bowl of porridge with Jersey milk. Steroids

Steroids are responsible for a lot.

Straight after I ate my bowl of porridge I fell asleep and I stayed in bed for the next 36 hours. Our 10 hours in London, wiped me out. I know that it is understandable, but I was still surprised the following day to find myself incapable of getting out of bed. The exertion was worth it. Meeting with the staff at Bart’s and albeit briefly discussing the next steps made me feel like things were moving quickly and they were moving in the right direction. I know that the odds of this working are extremely low, but I feel positive about it. Well, I feel ready for my treatment to start and I am not going into it thinking it’s going to fail…So, yes, that’s something. 

I cannot quite believe that I am on the trial. I do not know how these things work, but I know that in terms of criteria and timings, I am lucky. I know that Myeloma patients don’t get ‘lucky’, I’m fortuitous. 

I know (because people have told me, not. because I have done any of my own research) that it is incredibly difficult to get on any dartumumab trial in the UK and it is for this reason that I will not let myself fully believe that I am on the trial. I might have signed the papers. I might have  completed the pre tests (I haven’t actually completed the pre tests, I still need to do a 24 hour urine sample). I might have been told that I am on the trial. I just cannot, until I watch a very slow infusion enter my body this Wednesday believe that I am really on the trial. At that point, I might doing a celebratory fist clench and feeling a tiny bit lucky. 

EJB x

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The Fear – Part II

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

Fuck. 

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

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

 Am I dying? 

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

I haven’t had long enough.

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

Am I a failure?

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

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

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

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

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

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

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

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

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

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

A lifeline. 

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

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

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

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

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

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

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

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

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

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

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

EJB x

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

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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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An Almost Quarterly Update

You may be wondering, ‘what the hell has Emma been up to?’ I wouldn’t blame you if you are, my life is an unpredictable rollercoaster of super fun times that many people would wish to emulate. It is for that reason that I don’t keep my blogs up to date and not because I am too tired, stuck in my bed and unable to follow the plot of Pretty Woman… Sure, I can always dream. The closest my life could come to a rollercoaster would be the teacups, where one goes safely round and around  finding the occasional thrill within the monotony, let’s say, like waving to somebody you know each time you pass them as the teacup swirls.

I’m being  a little harsh. I had a jam packed February, one that has left me feeling exhausted, sick, frustrated, happy and satisfied in equal measure. It was jam packed for me, jam packed for somebody who spends at least two full days a week in bed and has 4 good hours a day on a good day. Looking forward to it, way back when in January, I thought my plans impossible. 

Before I explain my month of (relative) excess, I should tell you what is happening with my body. Spending so much time in bed, measuring time by cycles, I struggle to fathom actual time now, but for the sake of this story, let’s go back to November. I realised that my paraprotein level was no longer falling as quickly as I would have liked. The dastardly thing had started to plateau, which by January meant the Medically Trained People took as a sign that I should be on a different treatment regime. It had stopped working after all. It was a decision that made sense to me, but worried me at the same time. It may have plateaued but on the other hand, it was not going up, could a new treatment offer more?  

In all of this, I am unable to forget that myeloma treatments are not infinite. There are only so many treatments that exist and if I work through all the possibilities available at a 6 monthly pace, what does that mean for my longevity? 

I’ll let you think about that for a while, because I have been thinking about it for a long old while. Three failed transplants and another failed treatment; I do not think it is pessimistic to put two and two together and work out the obvious. Though, I imagine my nearest and dearest do find my arithmetic something gloomy.

On the other hand, I do not think it is healthy to dwell, so let’s move on. 

My new treatment was introduced at the beginning of January. Unfortunately, I caught Influenza A, which is a bog standard flu to the masses, but in me, it meant everything had to stop. It meant isolation and face masks. Points must be awarded to my CNS who decided to swab me after I fell asleep in the waiting area, despite my protestation that it was only a slight cough and I was fine. Catching it early meant that the anti flu medication worked, meaning it only took me a fortnight to get over the flu instead of the six weeks it took last year. I was also able to suffer from my own bed instead of a hospital bed, for which I am most grateful. 
As an aside, following this experience, I will inform the Medically Trained People of any new ailment as soon as I experience it. Well, within 24 hours later. Maybe 48 hours. What I am trying to say is that I will not try and manage it alone now, the consequences of a slight bug are not the same as they once were. I must use my common sense and being a martyr does not equal common sense as much as I think it makes me look like a badass.

So, I got over the flu and once my throat and nose had been swabbed once more, I commenced my new treatment. I am sure scientifically there is a difference, but practically there is not a great deal to distinguish between a regimen of Revlimid, Dexamethasone and Ixazomib and a regimen of Pomalidomide and Dexamethasone. I still take one of the drugs nightly for three weeks, with one week off. I still have to take steroids weekly and I still feel rotten as a result. On the plus side, I do not have to deal with the sickness caused by the Ixazomib. The downside is that I have not had a paraprotein result from the new treatment yet and thus, I do not know if it is working. 

The last month has made me pause to consider whether said drugs are working and that is not just because I am plagued by pragmatic pessimism. I am in more pain than I was in December. I hope this is a result of over exertion in February. The jury is out on that one.

I am not the sort of cancer patient who reads up on new treatments and overly questions the Medically Trained People. I have chosen to trust them, rather than invest my energy trying to find a better solution. Some may disagree with this approach, but that is how I manage. I only mention this because Pomalidomide has only recently been made available as a regular treatment in the UK and I did not know this. It makes me hope that there will be new drugs and combinations of drugs, that will broaden that scary finite list that I (and so many others) am a hostage to.

Prior to last week, I had been on constant treatment for five weeks instead of the usual three weeks and I could certainly feel the difference. It felt like everything about me from my brain to my toes had slowed down. I don’t think my recent fatigue was helped by starting my new treatment straight after the flu either. Just trust me when I say, it has been exhausting. 

Despite the dense fog of exhaustion where I found myself for almost the entire month, I have had an exceptionally time of it. My compromised body handled February pretty much the way I expected it to handle it. With difficulty.

I was honoured to be invited on a Stag Do, taking place in Amsterdam. Yes, a Stag Do. That’s positively normal behaviour for humans of my age. I thought long and hard about all the issues I would have to face, weighed up the pros and cons. Limited walking, early nights and limited energy compared with the 21 able bodied thirty somethings also going we’re definitely high on the ‘con’ list. All of it pointed to not attending, but where’s the fun in that? Giving in to it, no way Jose!

Inevitably I scrimped, scraped, borrowed and I went. That act alone felt rebellious. I also travelled without medical insurance cover for the simple reason that I could not afford  a £260 minimum spend for a three night trip. That wasn’t rebellious, it was reckless and it won’t be something I would dare repeat, especially to a location covered in snow and ice. I usually live in a world where I would not step out of my front door if there is a mild frost. It meant as great a release as my trip was, I could never fully relax because I feared something would go wrong. I had even planned a contingency of Mamma Jones driving over to Amsterdam to rescue you me, were something to have happened to me.

Prior to the trip, I decided that I would loom knit a hat for each attendee. If you were still wondering what I did for January and the first 10 days of February; the answer is hats, lots and lots of hats. Sitting on my sofa making hats. Dreaming about hats.  I think it was a project that whilst garnering a great deal of personal satisfaction for being able to complete such a task, it put me on the back foot energy wise before my busy February even began. I gave myself no time to relax because I was proving a point that did not need to be made. 

I won’t go through everything I did in Amsterdam. Just know that it was a tonic. A very large tonic. I never once had to lift my suitcase and whenever I left our accommodation I felt protected by a group of bodies who were almost as worried about me slipping on the ice and breaking a bone as I was. It is quite different going away with a group of friends then going away with one’s mother. If there was a secret test, my friends certainly passed it. In a nutshell, the only person to make me feel like there was something wrong with me, was me.


This computer in Amsterdam said I was Happy. It was correct.

Leaving Amsterdam, walking through the airport, I realised that my body had done all it could. I feel for the person walking with me to the gate as he was met with a constant whiny chorus of ‘I can’t walk anymore, I can’t walk anymore’. On returning to London on a Tuesday evening, I got straight into bed, took my nightly dose of chemo and my weekly dose of steroids and stayed in bed until the Friday. I had to leave temporarily on the Thursday to go to a meeting, but that required Marvel Studio-like strength and resulted in the most horrible feeling of weakness that had me yearning for my bed.

On that Friday, the one where it took me until 15.30hrs to have the energy to get out of bed despite my cleaner trying to change it, I was due to travel out of London for a wedding. For somebody that has four hours of energy a day, on a good day, this was a mammoth task. Gargantuan. I was not going to miss the wedding however, it was too important and I too stubborn for that to have been a possibility. Somehow, and I really do mean somehow, because I have no idea how I achieved this, I managed to pack, shave my legs and meet my friends at our car rental for 17.30hrs.

Once again, like in Amsterdam, I felt fully protected by the people I was travelling with. They were so considerate of my limitations, I felt like I was getting my energy through them. They drove me to my hotel, financed said hotel and just made the whole thing possible. It made it possible for me to watch a dear friend get married, with my body only giving up two hours before the wedding was due to end. Give up it did. With all the excitement, drugs and post Amsterdam fatigue, by 22:00hrs, talking was proving to be impossible. Walking, from an afternoon of standing and not putting my feet up, had slowed to a shuffle accompanied by constant pain from my pelvis to my neck. Unavoidably, having lost my ability to speak and most of my leg function, I had to leave.
This is me posing next to, I do not know what, at said wedding. 

Leaving early made me so angry. There are times when I tolerate my body, but crawling onto my hotel bed trying to make a nest of pillows large enough to ease my pain, I hated my body. I was embarrassed by it. I was annoyed that I could not speak to the friends who where there as much as I would have liked because my body had automatically switched to battery saving mode. Whilst in that mood, I also became irritated that the same rules applied in Amsterdam. I may well have got the most I was capable to get from it, but I did not get to experience everything on offer. Myeloma always makes me feel, even temporarily, that no matter how much I participate, that I am on the outside looking in. 

Fortunately in this instance, I took 10mg of Amitriptaline and I was able to have some resemblance of a reasonable night’s sleep. Waking not to a feeling of melancholy, but to a hangover mixed with pleasure that I was invited and able to attend the wedding, I forgave my body. It has not been forgiven yet. 

All my common sense tells me that when one is as deep into the myeloma journey as I am, I have to see these trips and experiences as a bonus. In February, I had two big fat bonuses. 

I’m paying for all of this now. On the Sunday I returned home, I got into bed, took my steroids and stayed there until the Wednesday. I then travelled back to my parents’ house and spent some more quality time in bed, feeling the burn.

Ignoring the puppy draped round my neck, I think this photograph sums up ‘the burn’ pretty well.

It is now almost two weeks later and I am still tired. I am always tired, but sometimes, just sometimes, I can pull a rabbit out of a hat and experience something different. 
Running throughout this whole period, in addition to my pill popping ways, I also completed my annual Oscar challenge. To quote an Oscar winning movie, I will ask myself when frustration kicks in, how do you like them apples? 

EJB x

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Last Christmas

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

  🎄 🎅🏻 🎄 🎅🏻 🎄 🎅🏻 🎄 🎅🏻 🎄 🎅🏻  🎄 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Perhaps these are resolutions after all. 

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

EJB x

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