Tag Archives: Waiting

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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Something New

WARNING – This blog contains some straight forward, no nonsense complaining and absolutely no humour whatsoever

Yesterday was my first day of treatment for Transplant Number 2, officially known as Day-6. Yesterday, will unofficially be known as my worst experience of NHS care. Yesterday was also the day I did something I said I would never do, and it was the day I shouted at a Medically Trained Person. Twice. I am part completely ashamed of myself and part sitting in my flat, wishing I did not have to return back to that hospital today. 

I feel ungrateful and belligerent. The bottom line is that St Bartholomew’s Hospital is doing a very expensive procedure on me, that my hospital would not do. That is the bottom line. It’s a procedure I need and without it, you could all but guarantee that I would not see 2025. My brain told me this many, many times yesterday. Why should I expect any extras like a smile or good communication. The NHS is overworked and thus should they  only be expected to plan and deliver the treatment because that is all they have time for. Perhaps there is no time for niceties.  Doctors and nurses work long hours and inspect faeces, that is something worthy of everybody’s respect. I should just be thankful that they are giving me the treatment I am getting, shut up, express my gratitude and get on with it. 

That would make for a short blog though. 

I did not feel comfortable or comforted once yesterday. I felt like a nuisance. The more upset I felt, the more tired I got and the more agitated I became. I walked into that hospital feeling hopeful and left feeling deflated and weak. I exaggerate not. I got home and slept for 12 hours plus extra snoozing, how much of that was due to the chemotherapy or to my experience I do not know. I can assume that the anxiety I felt for most of the day, was not a good starting point for my treatment. 

I have spent just under three years experiencing a rather marvellous service provided by the NHS. I do not know the budget differences between the two NHS trusts, but I think I can safely assume that UCLH is also operating within tight financial constraints. UCLH often runs with delays, I know this because I have in my time experienced them many times over. Delays that would allow for a screening of  Gone With The Wind with an interval and lunch. Yesterday, I remembered with longing the five hours I once had to wait for an injection of Velcade. As annoying as that was, it was explained to me and the bad news was delivered with a smile. 

It is not fair for me to compare the two hospitals, but it is incredibly difficult not to. I do not know any better. 

When it comes to the NHS, I like to consider myself a seasoned veteran. I am no stranger to a busy ward, red tape and a strange system for dispensing medication. I know full well that I have been spoilt at UCH’s Macmillan Cancer Centre with it’s comfy red seats and foot rests. I knew that going in and I levelled my expectations appropriately.  At least, that is what I thought. 

Perhaps yesterday just wasn’t my day. Perhaps it wasn’t the hospital’s day. 

Prior to my treatment starting, I had agreed that I will have my treatment as an outpatient for as long as is possible. St Bart’s does offer an ambulatory care, which is referred to as the ‘Hostel’, something, I am told,   should not be compared to the Cotton Rooms at UCLH.  I was given the option of staying there or at home and stay at home, in my own bed, I chose. The plan is for me to come in for five days in a row for treatment. Before yesterday, my expectations on how the conditioning was going to pan out was based on my word processed itinerary. Plus an added hour or two on each day, based on my very own My Myeloma  experience.

  

Yesterday, I arrived at the hospital at 10.26hrs and left at 17.25hrs.  

Big whoop I hear you full timers say. People will have worked for longer yesterday, the people treating me will have had a longer day, but for me, that is a long day. It was a very long and frustrating day. It started promisingly, on arrival I was taken straight through reception and I was told that the order of events was as follows;

• have my bloods done

•PICC line inserted

•See doctor for final go ahead 

• Receive the chemotherapy. 

On the face of it, that is exactly what happened, minus the massive gaps of lost time in between. Massive gaps.

Am I asking for special treatment? Am I being the ‘princess’ a nurse once called me during Transplant Number 1 the First? I worry that that is how I am perceived. The complaining heifer.

It was not until after I had had my PICC line, an x-Ray and waited 75 minutes to see a doctor at 13:35hrs, that I was told that I should expect to be in the hospital for a while. When I met with the doctor at 13:35hrs, I was told that they could not prescribe my chemotherapy until they had received my full blood count results. Results that they had  yet to receive despite the blood leaving my arm at 10.30hrs. To give you a little perspective on this, it takes 15 minutes at UCH. A point I reiterated later in the afternoon along with the fact that my bloods would have been tested quicker had I gone into an A&E. An A&E is not a specialist oncology and Haemotology unit. 

Fast forward to 14.15hrs, I was informed that the chemotherapy would be ready at 15.45hrs. Exasperated, I decided to use this time to have a nap. At 16.40hrs, a nurse hooked me up to an unexplained something. Experience told me it was just a flush, but I did not know if the chemotherapy had been added to the bag. Fifteen minutes later, I discovered that it was not my chemotherapy because two nurses came along with the chemotherapy. 

I cannot begin to describe how frustrating it was not knowing how long I was going to be there for, and  the estimated times I was given not being followed. I became more and more agitated as the day went on, and I did point out during one of my rants that if somebody had told me sooner that it was going to take six hours to get the chemotherapy in me, I could have left and come back. There were several opportunities for the Medically Trained People to do so, but they did not.

The delays were bad enough, but apart from the kind ladies who put in the PICC line, every encounter with a Medically Trained Person was cold, clinical and distinctly lacking in communication. At one point, two people treating me spoke to each other in a different language. One of the nurses told me that if I was concerned about the wait, I should just be thankful that they put the PICC line in without waiting for my blood results. 

After the PICC was inserted, I was required to get an X-ray to ensure everything was tickety boo. I am familiar with an X-ray, but I was not familiar with the process of being taken into the X-ray room and being instructed to change without a curtain whilst the machine was set up. Similarly, I did not expect two women and a man to be walking around the room whilst I attempted to put my bra on after they had completed the X-ray. 

Again, do I expect too much? 

I am by no means squeamish, and as I  fully understand the need for people to be medically trained, I did not mind when I was told that the person inserting the PICC line was doing it for the first time. I did struggle with the educational narrative and corrections that came from the supervisor throughout the procedure. With every correction, I could feel the tugging and the cutting and I become increasingly aware that I had a hole in my arm with half a metre of tubing entering my body . Fortunately, I had some tools in my arsenal and towards the end, I found Julie Andrews singing ‘My Favourite Things’ in my head on repeat. And then I didn’t feel so sad. 

At some point in the middle of the day, I started to cry. I then cried a few more times. I was alone in a new hospital, where nobody knows my name and nobody seemed to have a desire to learn it. 

It was too much for me. 

Expecting a prescription that I was told would be there and was not, was too much. Explaining to the doctor that I needed one anti sickness pill and not the lesser anti sickness pill, to then be given the lesser anti sickness pill three hours later was too much. Being prescribed less laxatives than I require and asked for, was too much. Not having my questions answered about the immediate side effects of the chemotherapy (I’m talking poop) by the doctor and nurse I asked, was too much. Trying to arrange my treatment times for Saturday and Sunday and being told that they cannot be booked in more than 24 hours ahead, was too much. Asking how it will work with my daily checks after Day 0 and being told to ‘just concentrate on my chemo’, was too much. Listening to an elderly gentleman scream out in pain as a staff attempting to give him a new cannula was too much. Being told that I should have known that ‘Day One was always like this’, was too much. 

I have often said that I would never shout at a Medically Trained Person. In April, during Transplant Number 1, I saw a lady get angry with the staff in Ambulatory Care. Initially I felt angry  that she was talking to the staff that way, but when she explained that nobody had explained what was going to happen to her and that she was scared, I understood. I am at a new hospital and I do not know how things work. Yesterday I was told to sit in a seat and wait and at no point was I told in clear terms what was going to happen and how it was going to happen. There was no introduction and no explanation. I imagine that this is what boarding school feels like.

I just have to like it and lump it. God knows how many days of this I have left. 

EJB x

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Day+4

Please not this blog was written yesterday. Today is Day+5, but really, who is counting? 

I have to be blunt. This sitting around and waiting to get sick, is nonsense. It is a nonsense that is really is getting on my tits. That’s right, on my tits. I am aware that that statement is somewhat crude, but I do not want to use my very limited energy coming up with a more palatable way to express my frustration. Waiting to be deemed ill enough to be admitted to hospital is beyond tiresome. Knowing what that illness feels and looks like, and waiting for it to happen, is not something I would wish on my top ten list of worst enemies. It has to get worse before I can feel better. I cannot compartmentalise this yet. I cannot cross the bridge yet.

Today is Day + 4, the day I was admitted to hospital during the last transplant. I did not envisage outdoing my previous milestone. I planned, and I prepared, and I convinced myself that the treatment would take me down much quicker than it did last time… I am quickly trying to readjust my thinking. It’s back to the drawing board. It’s difficult to do that when every minute of every hour of every day of this last five days, I have waited with pure dread for the unforgivable mucotitus. The chickens have not hatched.

At this point during the last transplant, I felt worse than I currently feel. My bowel had already started to fill a reservoir, my stomach was cramping, I had not eaten for 24 hours and I had a fever. Today, I feel quite nauseous, but the three anti sickness pills taken three times a day, seem to be doing their job and I managed to nearly finish my lunch earlier. An outsider would be forgiven for thinking it was a piece of cake, but to the feeling of almost constant near vomit, add the need for 12-16 hours of sleep every day since Friday, burping after every sip of water, stiff joints and the occasional sweaty brow; and a poorly Emma you make. Just not poorly enough. What I experience now, I would  describe as ‘horrible’, but it is nothing compared to what is to come and I feel that most keenly. Am I allow to seek sympathy now when I know I am going to need so much more in a few days, or am I just crying wolf? 

There is a lady in the hotel who had her transplant on the same day as me, and she is waiting to become unwell  just like me. However, I am jealous of her, because unlike me, she has not experienced the ‘feeling unwell’ before. It’s ridiculous, but I think I found not knowing exactly what to expect much easier than I have the last 72 hours of remembering. I would be the first to admit that I do not recall how accurately I have remembered it all. Accurate or not, my current anxiety is real

As things currently stand, my White Blood Count and Neutrophils both stand above 2, I do not have a temperature, my mouth feels woolly and my stools are non-existent. I am eating, but I am unable to drink more than a litre a day. I am more than under the weather. 

I am whinging. I know I am whinging. I cannot help it. It’s the fatigue and the overwhelming fear that I will not be strong enough to manage the pain and inflammation of my body’s mucous membrane. That my friends, is the long and short of it.

Fortunately for me, I prepared for such moments of self doubt. There is the obvious response to my questions of coping and getting through it all, stolen from a sports brand, along the lines of just doing it.

However, when I feel like my ego needs a bit of stroking, I take my mind back to February 2015. “Hello a birthday weekend away with friends in February 2015”, I say. A weekend when, in spite of being at the end of a  very long course of debilitating treatment, and thus, worrying of nothing but my ability to stay awake, I defied all my expectations and stayed awake. I saw 05:00hrs for reasons other than my back hurting and steroids . It was hard work and required some preparation, but I did it.  I was so pleased and surprised with my three day performance, that I, rather delicately declared that I had “pulled some energy out of my arse”.

A few days after that, I was asked how I thought I was going to get through my transplant, and I responded with “I will just have to pull something out of my arse, that is what I have done so far and it has worked.”

So, can I pull something out of my arse yet?

EJB x

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October

As most of us, come mid November are trying to concentrate on the important things in life like the John Lewis’ Christmas advert or Kim Kardashian’s posterior, this Novemember, there is something holding us all back. Something niggling in the back of our minds like an unpaid gas bill… Chill. Relax. I am here to help. That something is the unanswered question, what the blooming jib jabs did Emma get up to in October?

Well, let me tell you. It’ll build up our defences against the festive cheer in our supermarkets.

In chronological order, I went on holiday, I attended many, many screenings at the London Film Festival and then I got depressed, and best of all, I did not want to talk to anybody about any of it.

I can sense your confusion, for two of those things listed above sound like annual highlights for the likes of me. They were. My sadness arose when I asked myself what was to come next and I had no answer. Since my relapse and being signed off work, my long term planning expired on the 19 October. October was to be my month of fun and then afterwards, I would focus on my treatment and my transplant. I have always managed my myeloma like this, in bite size chunks. The problem is, my treatment is unpredictable and whilst this is nothing new, at the moment, I find it almost impossible to plan anything that is not about myeloma. Hell, because of my stubborn paraprotein, we can hardly plan anything related to myeloma either. It made it very difficult for me to see a positive after my last screening. In fact, I felt leaving the last cinema that my fun had just stopped. The limbo and the waiting is not a new revelation, and most the time I am content with that. October’s issue? I knew that I had nothing specific, nothing exciting like a holiday or the London Film Festival to look forward to. They were in my past. My future, as things stand, is uncertain. I do not like this one bit.

I need the a buffer.

I find it very difficult to admit to myself that I found a luxurious holiday and the viewings of 20 arty farty film bittersweet, but I did. I struggle not knowing when I am going to get to do them again. Imagine that for yourself. Worse than that are the times when that specific when becomes an if, and then what you get is somebody who feels quite sorry for themselves who wants to shout crude words as loud as she can and unleash he anger by punching things. Of course, she cannot punch things because it would hurt her back, a knowledge which creates more pent up frustration. Furthermore, when I vocalise these things, I do not just upset myself and I am ever mindful of that. My immediate response last month, was to keep all this to myself.

That approach never works for me, as the uncontrollable three hour nap after a counselling session on 3 November proves.

The enjoyment I had over the first three weeks of October would not have been possible had my body not struggled through my third treatment cycle in September. Keep up with this next bit because it is a complicated timeline involving too many numbers. The chemotherapy had given me a neutrophil count of 0.48 and a white blood count of 1.3 on 25 September, and thus a decision was made by the Medically Trained People to cut the cyclophosphamide out completely for Cycle 4 and halve the Revlimid dose. It does not take a genius to work out that less drugs mean less fatigue. It does not mean no fatigue, however but it meant that I had noticeably more energy for those 28 days.

Cycle 5 started on 23 October and with that came the return of all the strong stuff, the impact of which was almost instant. It was a noticeable change that just happened to coincide with the morbid thoughts. It was a change that meant that I could see the difference between drugs and less drugs, and I do not know quite how I feel about that difference on my life. Also on this date, I was told that there is still no timescale for my transplant. All I was told is that my paraprotein had to get to at least 10 (it was 15 on 25 September), before I could get a referral to the People Trained in Stem Cell Transplants and then, any transplant would be at least two months after that. More and more limbo.

Consequentially, as happy as I was to be able to leave my flat everyday for the ten days I experienced LFF and to walk around the ruins of Herculaneum, I worried that on the otherwise of the coin, I was experiencing a setback in my treatment thus extending the excruciating limbo further. For how was my paraprotein expected to reduce on less drugs when it’s reduction had already started to slow? Was it a case of history repeating itself? These were questions to beat myself up over in the nighttime. And the daytime. All the time.

It has been a few weeks now, and I can confirm that I am feeling better. Less maudlin and more receptive to John Lewis’ penguin. I know the limbo will not go away any time soon, nor will the uncertainty over the success of my transplant and whether that means that I will never be able to leave these fair shores again. I just have to find a way for these facts to not make me crumble. If I am having any sort of crumble when the clocks go back and it is getting cold outside, it’s the sort that comes with custard, not salty tears. As a dear friend told me at 02:00hrs one morning, I have many things I can do to fill the time in this limbo. One day, potentially one day soon, I’ll tell you all about them.

The moral of this story is that there are days when I feel like I am an old pro at all of this and there is nothing that can possibly surprise me, and I think I am managing it all well. Then there are other days, weeks or months, when the melancholy will come out of nowhere, taking me by surprise by squatting in my head, and I feel completely naive and scared. At the start of October I thought I had appropriate defences to protect myself, which included my holiday and sitting on my bum in the dark in a room full of strangers. Evidentially, I was wrong…. It is just the way the cookie crumbles.

EJB x

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The Thursday Clinic Appointment

Every four weeks, I make my way with much trepidation to the Macmillan Cancer Centre on a Thursday morning for my myeloma clinic appointment. I doubt there will ever be such an appointment now, even if the lapse between them lengthens, when I do not experience some level of apprehension.

My unease is always somewhat lessened by the routine that exists when I finally arrive in the big glass building. In spite of the anxiety, these trips almost always exist on the duller side of dull. And that is a dullness that needs to be shared! Yesterday then, the routine went a little something like this:

07:45hrs:
Housemate woke me up like he does almost every weekday morning since I was diagnosed and reminded me that I had to get up for my appointment. The appointment, was at 10:50hrs. I got up half an hour later. It was difficult.

10:10hrs – Transport
I left the flat via the cheap means of travel that is the taxi ten minutes later than I had planned. Unfortunately, this is very normal for me. I was impressed that it was only ten minutes. I applied the lipstick in my hallway before I left. I also grabbed the full sharps box I had placed by the front door the night before, with the hope that I would remember to replace it with an empty one at some point whilst at the centre.

10:45hrs – Bloods
I arrived at the hospital, where I immediately made my way downstairs to the lower ground floor to have blood removed from my arm. I still continue to lack the confidence in being able to safely make my way down the stairs, so I got the lift. Laziness has nothing to do with this decision whatsoever, yet, embarrassment that this can be perceived as laziness always exists when I turn right away from the stairs towards the lift.

For late on a Thursday morning, I was surprised to see only three people in front of me in the queue. I was number 22 by the way. I would have preferred number 24, but I did not have the time to wait for two other people to go ahead of me. The receptionist on the phlebotomy reception always refers to me as ‘Myeloma’. I imagine that this is something he does to all frequent myeloma patients because our blood forms are in one pile, and he is does not hurl it at me as a form of an insult. I will not lie, I kind of like it. And you know, he might not do it to all the patients, so I can momentarily pretend that I am special or just memorable. As always, I made some light, wise cracking conversation about my weak veins the minute the tourniquet was placed on the top of my left arm.

11:05hrs – The Waiting
Yesterday, I skipped purchasing a cup of tea and instead headed straight up to the fourth floor for my appointment. I sensed that being 15 minutes late for my appointment was acceptable but 20 minutes was not. Plus, I really am not a fan of the Tetley tea.

First things first, I had to check in. I checked in and then the nursing assistant did what she does to me every month, which is something that is known as pure torture. She weighed me. Thank goodness I managed to do something, adding to my late departure earlier in the morning. As soon as I stood off the scales I got a bottle of water out of my bag and started drinking it to make sure I had the goods for my pregnancy test.

Myeloma patients are required to wait on a set of chairs in a corridor on a Thursday due to the transplant patients in the actual waiting area. In that corridor, there were five people waiting, all of whom could not raise a smile. At least, they did not in the 25 minutes I sat there. It’s a depressing wait. Nobody talks, even the ones accompanied by other people. One man who I sat next to at first, but he quickly moved one seat away from me spilt a drink on his trousers. I offered him a tissue and he just shook his head without making a sound. I smiled, he did not. I deduced that they suffer from the same apprehension that I do, they just prefer not to shout about it. So, I just sat and continued hydrating myself.

A sixth patient made an appearance, one who I had seen downstairs but failed, maybe on purpose, to make contact with. We were on a PADIMAC together and despite him being a friendly sort of chap, our conversations would occasional upset me. I suffer greatly from myeloma treatment envy and on that particular course of treatment, I had the envy. Anyway, he said he missed me and had been trying to find out how I was. He could not wait to get home and tell his wife about my curly hair. The conversation made me feel a slight twang of guilt about my behaviour on the lower ground floor when I first saw him.

11:30hrs – My Appointment
Shockingly, my wait was incredibly brief yesterday, something that I could not help but vocalise. The Medically Trained Person called my name, she had not seen me for two months, and I was pleased that she immediately noticed my movement was less strained then it was when we last met. I believe she said that I was “positively speedy”. As I continue to be in pain everyday, it is very difficult for me to notice any improvements in my mobility. I do not think my memory works that way. She saw it, at least, I hope improvement is what she saw.

In these appointments, I tend to just tell them what has happened to me in the four weeks since my last one. I had a lot to say, but had a CNS been in with me, they would have known it already, for I feel like I have been overly needy since my radiotherapy finished. I mentioned A&E, the vomiting and nausea, the diarrhoea and the increased fatigue over my last week. We also discussed my forthcoming holiday and the need for me to be cautious. I said that with Mamma Jones, I would have no option to be anything but cautious.

The Medical Trained Person told me that at my last paraprotein test, taken on 28 August, my paraprotein had fallen to 16. The folks at UCLH continue to be pleased with my progress. Myeloma treatment is not that simple, and what followed was a conversation about my low neutrophils and what would happen to my medication if they continued to be low. Unfortunately, my Full Blood Count results had not been returned and I was sent off to see the pharmacist to collect my pile of drugs.

En route, I had to interrupt a conversation a Medical Trained Person was having with another patient to say that I had to do my pregnancy test. As she said, it could have been something of a Carry On moment. The urine sample I did, not without spilling it all over my hands and the floor. It happens every single month.

12:00hrs – The Pharmacist
My visit to the pharmacist normally lasts no longer than 10 minutes; not yesterday. My FCB was back and my neutrophil count had fallen further to 0.47, and my white blood count to 1.38. As a lot of you do not need to know what this means, it is very low and the WBC result definitely explains my recent increased fatigue. And so, I had to wait as the pharmacist went to ask for some further educated advice. Any anxiety that had gone when I left my previous appointment quickly returned as I sat in that room by myself.

The decision was made that for one cycle, I would be given a cyclophosphamide reprieve and the Revlimid dose has been halved. Apparently, my body needs to a wee break from the drugs. I see positives and negatives in this latest drug development. To help the infection magnet that is my body, my G-CSF injections have also been upped from one a week to two. I now have to return to the hospital on Monday to have my bloods done again. I hope that these bloods will not stop me from getting on a plane next Wednesday.

12:40hrs – The Dispensary
I was done, and in possession of a lot of publicly funded medications bar my morphine. So, I made my way back down to the ground floor to collect the controlled substance from the dispensary. It was not ready. I was not surprised.

12:45hrs – Macmillan Cancer Support
I took it upon myself to pop into the Macmillan Support Centre to have a brief chat with my favourite ladies. I think they needed to know that I had an uncontrollable desire for sushi followed by a rare steak followed by raw cake batter. I was told that given the current 0.47, such a meal would be unwise. As if I needed to be told that.

To avoid getting angry at the snails pace of the dispensary, I spent the next hour catching up with a friend over a cup of tea. I then ran a few errands on the worse road in London Town.

14:30hrs – The Dispensary
I returned confident that my MST would be ready to collect. By this point, having been on my feet for more four hours, I was more than ready to go home. I handed in my ticket and after ten minutes of the gentleman trying to find it and telling me it was not there, and me reassuring him that it was, another person told him that it was in the floor, a mere 5 metres from where I stood. I was not pleased, nor were the six people behind me waiting to collect their drugs. I handed over my driving license and signed the form to say it was for my personal use. I must not forget that immediately before that I put pen to paper, I had to confirm that I was not allergic to any drugs and I had taken MST before. 772 days before in fact.

15:10hrs – Home
I opened the door and made my way immediately to the sofa where I stayed until 20:00hrs, at which point, I dragged myself off to bed.

So, you think all of this sounded monotonous? You can only imagine the thoughts and discussions I omitted from the experience for your pleasure. Well, just think, I get to do it all over again in four weeks time. And the four weeks after that and most probably, the four weeks after that.

This is my life.

EJB x

P.S. I remembered to replace the sharps box.

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Special

I have always known that I am one to stand out from the crowd, if said crowd were located on a catwalk. I have always known that I am special, even when I pretend I am
not and that was true long before I had myeloma. I am clearly always looking for evidence to prove that I am both right and special, in case somebody was ever to call me into question. Such evidence also feeds both my confidence and my ego, so I am eager to discover it no matter how tenuous the link.

So imagine my delight on Tuesday when I looked at the treatment board to find that I was special and I was standing out from the crowd. I was so happy about it, I took a photo.

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Proof

Of course, one could say that the reason my name was singled out was nothing to do with me being special. They might simply say that I was the last person to be treated by that section in Daycare on Tuesday afternoon. If they were being accurate, they would say that I was not the last person booked in on Tuesday. I had the last time slot of the day, but that does not mean that I was the only one to arrive at 15:00hrs. I probably was not the only person to wait 75 minutes to be seen by anybody either; it was very busy after all and that meant I had to sit in the greenhouse on an uncomfortable chair again (seriously guests of patients, give up your seat to patients, it is not hard). I was however, the only person on Tuesday afternoon not to have had their Velcade waiting for them . Not only was my medicine not ready for me, it had not been made. The discovery at 16:20hrs, meant that I had to wait for another hour whilst the pharmacy worked their magic. It was an unfortunate fact, especially as my attendance had been confirmed just 24 hours earlier. I did remain remarkably philosophical about the three hour treatment time and I used said time productively, for which I am sure my employers are most grateful. Back to my first point, as I am not the only person to have been delayed in this way, you could argue then, that I was not and am not special.

It’s a tough call. >

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Something Old, Something New

I am not one who always embraces change. I like to feel safe and familiar, though I also like progression, and that is why I am never pleased. Today, I am faced with something that is both familiar and new, and I cannot distinguish whether the distribution is correct.

Some people may think this is strange, but whenever I am confronted with a room that is decorated in red and off whites, full of people in uniforms who know who I am, sitting on a big red chair, waiting for thirty minutes and counting, I feel safe. I feel safe even though only unpleasant things happen here. The sight of my electronics resting on a red footstool is rather comforting, even if I am annoyed with myself for forgetting to bring my phone charger with me. In fact, one would be forgiven, as I sit here sipping on my Costa tea, which has a hint of cardboard about it, that absolutely nothing has changed since I was last in the big red chair, that everybody knows is my favourite. Have I mentioned this before?

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Life has of course changed, since I was last in the hot seat. This has changed. I will not allow myself to think that this is exactly the same as the 40 times I have been here before. It is different. I am making it different. I cannot feel like I have not moved on since I first came here for Velcade on 1 September 2012.

This is a new chapter.

I am not having Velcade to reach a certain point or a target, there is no transplant at the end of this round of treatment, particularly because this is not part of a cycle, and it is not a set of treatment, this is something that I am going to have indefinitely, every fortnight, to hold something off for as long as possible and keep me in the myeloma definition of a word of which we do not speak. That is what makes the here and now different.

I may still be sitting in the red chair, chatting utter gibberish to the Medically Trained People because I am suffering from the fatigue today, occasionally looking at the borderline attractive doctors, whilst writing a blog on my iPad, but this is different. They’ve changed the wifi user name for goodness sake!

I know what you are thinking, there is a part of this story that is missing. Why have I been sitting on the second floor of the Macmillan Cancer Centre for 80 minutes now, waiting for an injection of Cilit Bang? Why have I just had to fill out two questionnaires about numbness and my poo?

The answer is simple, because I have to. It’s the pay off the likes of me have to make when the disease they have is not currently active. I think.

So, it may walk like a duck and quack like a duck, but in this particularly case, it is definitely not a duck. I’m a mother effing swan.

EJB x

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Checking Out

Yesterday, the Senior Medically Trained People told me that I would be discharged by 15:00hrs. A person who had yet to complete her training told me that all being well, I should be out by 11:00hrs. Her estimate was supported by an Angel. I knew which time I would prefer, but I decided that patience was going to have to be a virtue when it came to me departing Room 7 on thirteenth floor of University College Hospital.

And boy did I need patience.

This morning, I woke up at 07:30hrs, relieved that two hours earlier my temperature had fallen to 37.0. My excitement was palpable. I just wanted to get home. I also wanted to have a shower, but there was no point in me doing that until my PICC line had been removed.

Based on what I had been told on Wednesday and yesterday, I needed to wait to see the doctors, my CNS, have my line removed and get my drugs. The latter, I was also told, were ready for me last night.

At 09:40hrs, I saw the consultant during her rounds and I was informed that I could go home. Fine. As they left five minutes later, the ward sister informed me that she would return in five minutes to get things sorted.

At 11:00hrs she reappeared to tell me that she would contact my CNS, confirm when I next needed to be in and check my blood results to confirm I did not need anything else. I said that 30 minutes before she came in, a Junior Senior Medically Trained Person had informed me of my blood results and said I would need to take some additional injections to boost my blood at home. The nurse was pleased with the news, especially when I told her I had already been in touch with my CNS and that I thought I had arranged having a blood test done in another hospital next week. The nurse left.

At 11:30hrs, I saw my CNS. Got all the information I needed and collected some blood forms. Done.

By midday, I was crying, because I literally had nothing to do, I could do nothing, until I was seen by the nurses. I may not have been doing anything for the last two weeks, but today, I had somewhere to go. Every minute dragged and dragged some more. I just wanted to get dressed. Trying to guess what time Mamma Jones should reach London Town was also proving stressful. All seemed well however because a nurse entered to give me my afternoon’s drugs and said they’d be with me in an hour. As I had a lot of time to think, I asked if they could also shave off my remaining hair.

At 13:15hrs a different nurse came in my room and I had what can only be described as a paddy, which embarrassed me because the nurse is very nice. We had a nice chat the other night and he made me think twice about a wish of mine to holiday in Moscow. Not at the moment. Anyway, he informed me that they would be with me in an hour, to shave my head and remove my line. My additional drugs had not arrived yet, so he added that even if they had removed my line, I wouldn’t be able to go anywhere. I explained that I could at least shower. I just wanted to leave.

It was time for show tunes.

I phoned some people and complained. I do not know how they could be so relaxed about it. I guess it is not their life is it? When somebody told me to be patient or relax, I got angry. Nobody could possibly understand the torture that is waiting to leave hospital.

At 14:40hrs, the nice male nurse returned. He removed my PICC, which was effortless and thankfully, painless. He then shaved my head again, to try and get off as much of the hair as one can without a Bic razor. It was at this time, I found out that my blood results had shot right up and I no longer required the additional injections. Brilliant. So I would be leaving soon, yes?

By 15:25hrs, I had showered, dressed and made myself look semi normal. It was just about waiting for the drugs. I sat. I waited. I carrie on listening to show tunes.

At 16:30hrs, with my wig on and my drugs in my bag, I walked out the main entrance and into a black cab.

I’m going home.

I’m actually going home.

I believe the customary thing to say right now is that I have done it. Bugger.

EJB x

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Different Departments

I am very much set in my ways. Unless I am in a work setting, wanting to impress my superiors, I am not usually a fan of change.

Since I was released from NHNN, all my treatment, bar three scans, three clinic appointments, including the ones I have had this week, and a dose of radiotherapy, have been in the Macmillan Cancer Centre. This week then, has essentially doubled my contact with the UCLH world. Geographically, the centre is not in the main hospital. For patients, it is a self contained little unit, where they test your blood, scan you and treat you, all in one place. Well, over five floors.

I realised after Wednesday, that those of us unfortunate enough to have to frequent the Macmillan Cancer Centre are fortunate to be treated there. Sure, there are often epic delays, the pharmacy inevitably manage to annoy me, and I will always find something to complain about, but we are spoilt. It is so familiar. People are friendly and sympathetic and the majority of staff seem to acknowledge me, whether it is the Costa Coffee Man calling me ‘Late Girl’ or My Favourite Receptionist teasing me about my collection of subtle necklaces. Overall, things run relatively smoothly there and crucially, I know what I should be doing.

The main hospital does not afford that level of comfort. It is a vast pit, full of strangers and strange places. The different departments either do not make any concessions for the big C, or they go too far and talk to me with their head tilted to one side. My Myeloma is not their priority.

Yesterday for instance, I received a voicemail saying that I had to come to the hospital that day for an appointment. The person calling me, failed to tell me the name of the department she was calling from, which most definitely got me in quite the pickle when I got round to listening to the message. It turned out that the call was from the Reproductive Medicine Unit, and I was not required for an appointment that day, it was simply regarding an injection which I had arranged with a doctor on Wednesday. It sounds like a minor thing, but I know that that sort of message would not be left by somebody in the cancer world, unless there was actually something wrong. Even if something was wrong, I probably would not receive a voicemail message. Normally, my messages from the clinic tend to start with ‘don’t panic’. Given the tests I had on Wednesday, I think a certain level of anxiety on my part is justified. I felt like there was a lack of understanding, a justifiable lack given the size of the hospital, but still a lack of understanding about my circumstance. This was evidenced by the response I received from another person in the RMU, who was extremely apologetic that somebody would be so vague in a message to me. I did not even complain.

I have experienced a lack of understanding from other medical departments before, from my brief stay at NHNN, to a scan I had, back when I was unable to lie flat and the technician got angry with me for not being able to stand up.

Today, I ventured into the Tower, to the main pharmacy, to collect a prescription, which then needed to be taken to the RMU to be injected. We have our own pharmacy in the Cancer Centre too and I confirm, it is nicer than the main hospital pharmacy. There is only one window and one queue for a start. There I was, waiting to collect a ‘script I put in on Wednesday night and as I waited, they served two people who arrived after me. I did not say anything for I am English, I just looked on in disgust and sweated. Upon reaching the window and handing over my ticket, ticket number 343 if you are interested, they could not find it. After a few minutes of flapping around and not communicating on their part, the girl informed me that my medicine had not be dispensed and there was a note on it saying it should not be dispensed. She asked me to sit and she would find out what the problem was and get back to me in a few minutes. I smiled and said she needed to, because I needed to have the injection administered by a nurse today. She then, helpfully disappeared.

45 minutes later, and after three calls to the generic RMU number, I went back to the window to be served by somebody else, to discover that there was no problem with my prescription and it was awaiting my collection.

I have discovered in my time that the pharmacies do make mistakes, but when I have experienced these previously, back in the place where everybody knows my name, I have known exactly what to do. Instead, I was left waiting in an area warmer than the outside world with 20 other people who were also waiting. No wonder they have a sign saying abuse to staff will not be tolerated.

I did not enjoy it.

I know that, for obvious reasons, I am noticing these things more and perhaps they are bothering me more than they would usually. After all, I do not like change… I sincerely hope that when I am in the Tower for my travels, it is not like my experiences over the last week and the people looking after me, make me feel looked after. If memory serves, they are very nice on T13, and there should be some consistency with my care, because on T13 or T16, they still concern themselves with blood and the Senior Medically Trained People are the same. Please let it be a home away from my Huntley Street home.

As for cross departmental appointments? I’d much rather, not.

EJB x

In defence of these different departments, there water coolers do come fully stocked with plastic cups unlike those on Huntley Street. Peaks and troughs.

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Four Weeks

I have four weeks of freedom before I go into UCLH for my stem cell transplant. The provisional date is 27 March. I finally have a date. One day I may have a date with a man too. We can hold hands and ‘stuff’, but for now, the 27 March 2013 is the only date I am worried about.

I will make myself enjoy the next 23 days, but I don’t want to. I don’t want to have to wait.

Way back in December, I was told that this current waiting period between the harvest and transplant was 1-2 weeks, then, I was told it was going to be 2-3 weeks and now it is four. Well, 27 days from my harvest. I know that in the grand scheme of things, an extra week is not a long time, but it is a long time to me. Getting to this point has been one hard slog full of set backs. I want it to move forward faster than the timetable is allowing it to.

There was a point when I looked forward to some time off treatment, but not anymore. I have already had six weeks off. Six whole weeks of waiting for something to happen and I do not want another four. I do not see this time as a time for me to enjoy being ‘normal’. All the time off gives me is extra anticipation and longing for the time when I get a period of recovery, when nobody knows when My Myeloma is going to come back (the stats say two years tops). Not a four week break that I know is only four weeks. Four weeks of waiting is not freedom. It is not living. After the transplant, I can, or at least I hope to, live for the moment. I am not living for the moment now, I am waiting for a course of treatment that I am assured, is far from pleasant and that is always in the back of my mind. Every added week to this process, that goes against my initial expectations, are days added to my sentence and I didn’t do anything wrong in the first place.

Four weeks. I am not entirely sure what can happen in four weeks. I’ll give it a whirl mind.

EJB x

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