Monthly Archives: August 2017

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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