Tag Archives: London

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. 
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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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Groundhog Day

Even though I have had cancer for, like, forever, I am still required to have the occasional bone marrow biopsy. Even though I have had cancer for, like, forever, the thought of a bone marrow biopsy fills me with dread and impending doom. If in fact, one can grammatically be full of impending doom. This morning, I woke up full of impending doom because I knew that at 09:00hrs, I would be forced into lying in a fetal position to allow for a bone marrow biopsy. I had been through an almost identical day before, for today was the Pre Transplant Tests Day. 

First things first, getting up early enough to be in the hospital before 09:00hrs, was not a pleasant experience.  I actually saw commuters, the nine to fivers. What a way to make a living. Before I had reached the hospital therefore, my day had started badly for I should have been woken up by Housemate and his dog and not by my alarm clock. Alarm clocks are for healthy people and not those who take a Diazapam before bedtime. I also knew that I faced a day of a biopsy, a kidney test known as a GFR Measurement, a Cardiac Scan and lots and lots of needles.  

The biopsy was just like the others before it, summed up with one simply word ‘painful’. This one however, had added blood and I ended up bleeding all over what looked like a puppy training pad, the waistband of my jeans and a little bit of the bed. I took a photograph of the latter to prove that I am not exaggerating.



Over time, I have learnt that the pain of having somebody remove a wee bit of bone and it’s juices from my body is lessened by having a friendly face to look at, that will talk to me whilst the dreaded deed is done. Today was no different and I had the addition of said person allowing me to squeeze his hand whilst I was pulling labour like faces and wincing. It all helped.

Following that little procedure, we endured a 85 minutes wait, as I waited for the next appointment, known as the GFR Measurement. Google tells me this stands for glomerular filtration rate, which is, apparently, ‘the best test to measure your level of kidney function and determine your level of kidney disease’. In practice, the test  was a right royal faff. It required my  companion and me to go back to the Insitutue of Nuclear Medicine five times over the course of the day to allow some Medically Trained People to take my blood after they had put some sort of potion into my body. Plus, two expertly administered cannulas in each arm. Due to a desire to protect my favourite vein, I opted to have the second cannula in my left hand, which meant I spent two hours sporting what looked like a mitt on my hand. Needless to say, doing up my trousers was quite troublesome. 

The first visit involved the potion being administered along with your bog standard flush. It looked very much like the photograph below.



I then had to wait for two hours before returning to the fifth floor of the magical tower that is University College Hospital, where a Medically Trained Person took my blood. I then returned an hour later when another MTP took my blood. I then returned an hour after that when another MTP took my blood. It was like Groundhog Day, with the added bonus of blood. My blood.



The whole thing was over by 16:15hrs, so let us all keep our fingers crossed that the results show a reasonable renal function. I really need something else to boast about.

Somewhere in the middle all of that nonsense, I had the cardiac test. I think this also required some sort of potion entering my body, but there was so much going into my body, there is a chance I missed it. These days, my motto has to be ‘Just Let Them Get On With It’. 

Even though I lost track of what was going into my body (an excuse for obesity if ever I have heard one), I did not miss having to lie on a flat mental bed whilst a machine took some expensive images of my heart for 15 minutes. I was also attached to an ECG machine. I must not forget that part if you are to get a clear picture of just how exhausting my day has been. I likened the machine itself to sticking one’s breasts in an upside down photocopier for laughs. Again, I documented the experience.





As is evident from the photographs, I found the experience quite sensual, what with the Velcro straps and all. It was sensual right up until the point when I had to sit up, when it became masochistic, well, if I enjoyed it. I did not. My back, along with the small hole in it, definitely did not enjoy the process of sitting up. I also did not enjoy the reminder that I still, after all this time and treatment, cannot lie on a flat mental surface and resurface without experiencing pain.

That was my day. Not all of it you understand, we need some secrets, but it pretty much covers what happened between the hours of 08:00 and 17:00. It was all too, too much for me and at 19:00hrs, I can confirm that I am in need and indeed, in my bed.

It would be most remiss of me not to mention that my day would have been nigh on impossible had I not had somebody to share the experience with me, hold my hand when I needed him to and who entertained me between blood samples. Indeed, his day, selflessly started before mine did, as he arrived at my house before my departure and accompanied home once it was all done. Even though I am tired and my back feels, as the the late and very great Mr Griffiths would say  like it has been kicked by a horse, I have a warm and somewhat fuzzy feeling in my stomach. I take this as both fondness and gratitude. Of course, it could just be because  we discovered the quiet solitude of Cancer Centre’s roof garden and not because my friend did something very nice for me. It’s hard to tell, I am full of unknown potions.





Now, let us all hope that this was worth it and in 15 days time, I’ll be on the verge of shitting my pants.

EJB x

Annex A: I ❤️ the NHS. You may be interested to know that during my day, I was treated by two nurses, four nursing assistants/technicians and saw two receptionists, not to mention the other people I saw and spoke to along the way. My tests also need to go somewhere once they are done and I there are several, faceless people behind the scenes including the people who will process my blood samples, contributing towards my wellbeing. What a service! It makes me quite proud. Also, those people in the labs, testing our bloods, always need a little shout out. 

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Best Laid Plans

When I eventually wake up today, the first thought I am going to have, after the one we all have first thing in the morning about emptying our bladders, will be ’16 days’. I know I will have this thought because I have had the same sort of numerically decreasing thought every other morning for the fortnight. It’s a countdown.  All being well, it is going to continue to decrease until I get to ‘zero’ and then I will find myself at what I have just decided will be called ‘Lift Off’.

I have been with this once,  silent countdown since 2 March and I have known of the less time bound specific transplant plans for slightly longer that that, but in the age of uncertainty and limited brain capacity, I have been quite loathe to write them down and explain it all. Since I only have a measly 16 days left to wait now, 16 days in which I imagine that my emotions are going to be here, there, under the stair and quite possibly anywhere else I can imagine, I thought it is high time for me to share this information with you.  The information of course, is also commonly known as a ‘Plan’. The Best Laid Plan. A lot can happen in 16 days. Coughs and sneezes spread diseases and all that, so, do understand my disclaimer. 

It has been quite a while since I did my MS Project training and I wager that I am in a minority of the population who have undertaken MS Project training, so my plan will only be presented to you in the form of words and potentially, the odd bullet point. Anyway, WordPress is not Microsoft Office, so I should just continue.

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I am having two transplants, you could say that they are going to be ‘back to back’, but that would depend on your definition of ‘back to back’ now wouldn’t it? Since my visit to St Bart’s on 11 February, during which I was bombarded with so much donor transplant related information that I had to take a 10 hour nap, I have slowly been trying to get my head around the implications of their plans for me. For your information, based on my discussions with the Medically Trained People, ‘back to back’ means a three or four month gap between transplants. Subject to the outcome of the first transplant. 

A month since my appointment at St Bart’s Hospital and I am none the wiser about whether what I was told was expected by me or not. I was told that I was going to suffer from severe fatigue post donor transplant for an undisclosed, but probably a long, period of time. I was also told that they will want me to have a little of something called ‘Graft vs Host Disease’, but not a lot of it, because if I get too much of it, the result could be worse than My Myeloma itself. Read from that sentence what you wish, but I have a full bottle of water next to me, so I am hopeful. To cut a long story short in terms of the graft and my host, they want me to get some rashes. Sexy. 

There are three possible outcomes to the procedure (they negated to mention a negative fourth outcome and so I will do the same). The first outcomeis a quick relapse, the second is a long period of remission and the third is a cure. They do not know which door I will get, and my, my, my, is that like, The Most Exciting Game Ever.

Prior to the appointment, I knew all of this information. That said, there is quite a difference between knowing it by piecing information together from various conversations and leaflets in isolation, to one Medically Trained Person confirm it all to my rash free face. 

What I did not know and what came as surprise to me way back on 11 February, is that I will not behaving a full allogeneic transplant. I will be receiving Big Sister’s stem cells in all their maroon coloured glory, but I will do so without any high doses of chemotherapy and radiotherapy. I will in fact be having what the Medically Trained People at St Bart’s call, ‘a Mini-Allo’.

There is a 50:50 chance that the mini-Allo procedure could be administered to me as an outpatient. News I welcomed with pleasure and a mental image of my television screen. On the downside, I feared this news might confuse my people over the severity of and longevity resulting from the procedure I will be having. I was told that whilst doing it this way removes some of the immediate risk that comes with high dose treatment and a severe lack of neutrophils, everything I will face in recovery is the same as if I were to have had a ‘full’ transplant.

Enough of that. That is my main course, which I will apparently be hungry for at the end of June or beginning of July. Plenty of time in my future to go through the minutiae. Plenty of time. For now,  I have my starter to contend with, which is provisionally booked in for the 1 April. Saying I am concerned about my next transplant would be an understatement. Unlike my previous autograpt, and to extend this  metaphor, I have been continuously snacking for these last eight months on various forms of chemotherapy, and so, I am not particularly hungry for more right now. I fear the overindulgence my adversely impact the proposed high dose course of Melphalan on that Wednesday, 16 days away.

As with July 2013, I have been told that I will be in hospital between 3-4 weeks.   I will be at the place where everybody knows my name, UCH and I will initially be staying in the hotel again, within the confines of Tottenham Court Road, until I become too unwell at which point I will return to quarantine in the Tower. Unlike in July 2013, I have been told that I cannot come in with painted toenails as the MTP may need to look at them. They did not need to look at them last time, and if memory serves I was sporting a hot red near my bunions, by I best not complain… I have other, more important things to plan for.

Having had a transplant already is a doubled edges sword. It’s both a blessing and a curse and for the life of me, I cannot decide if I am better off knowing what to expect or not… Let me tell you something for nothing, it does not make me any less scared nor emotional about doing it. 

Depending on the outcome of some tests I have tomorrow, in 16 days time I know that I am going to start a course of treatment that is going to have me clasping my stomach in pain, a pain that will last for well over a week and unrelenting.  At the same time, I am more than likely to once again, as an adult go through the embarrassment of soiling myself.  My mouth is going to become so dry due to a lack of fluids that I will have at least a week long film in and around my mouth, with cracked lips and a dagger for a swallow. My hair, my beautiful hair will once again fallout. I am going to need a lot of sleep. I will then get discharged from hospital and become reacquainted with solids and fresh air. And all the while, I will be the only person I know going through it…  Then, just about when I am starting to feel better, the main course will start  and that is something I have not tasted before. In 16 days time I will commence a course of action that leads to a plethora of unknowns.

I have purposely arranged this month, my time now, where I have a reasonable handle on my limitations, so that I can enjoy myself as much as my body will allow. It’s a crucial part of my plan. Fun is a tonic, as is completing things on lists. I suppose that, however, is another story. 

When I officially wake up today and say to myself ’16 Days’, I am telling myself that I have 16 days of freedom left before I become, well, before I become, I do not know what. I am telling myself that I have 16 days of normal left, 16 days to find the strength to get through the x number of days that will come after it, as well as the strength to manage all the other unknowns I, my family  and my friends are going to encounter.  

A Best Laid Plan

  • 11-31 March – Drug free. Attempt fun. Avoid snot.
  • 1 April – Day -1. Temporarily relocate to Tottenham Court Road, stayin in the hotel. Recieve Melphalan.
  • 2 April – Day 0. Recieve stem cells transplant. Spend the next few days waiting to get sick.
  • A Few Days Later – Be very unwell and spend several days shut in a room with little to no privacy. Await the happy news that I can be discharged.
  • Two to Three Weeks Later – Get discharged. Allow Mamma Jones to look after me until I am strong enough to put things in the microwave, which would mean I will be at the point where I am able to eat again.
  • Sometime in May – return to London Town to do some more recovering and more sleeping.
  • June/July – have the next transplant.
  • August, Autumn and December – recover. Avoid germs. Perfect drug cocktail. See signs of weight loss and hair growth. Attempt to keep personality intact, 

So there it is, the big plan. A plan that is probably as clear as it will ever be. A plan that I know all too well from past experience, is subject to change. I hope it does not change, for the simply fact that I am ready to move on now, or at least I will be in 16 days time. 

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I will leave you with one final musing. Getting over my last transplant, the months of recovery after it was the hardest thing and I mean the sort of difficulty that is weighted in isolation, lonliness, endless broken sleep and fuzziest of fuzzy brains, hardest thing I have ever done. I am not the same person because of what I experienced in  aftermath of that transplant. And the memory of these consequences is usually my second thought after I wake up and recommence the countdown.

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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An Anniversary

I should have hit the ‘post’ button yesterday for this post to have had a more dramatic impact. Unfortunately, I really did fight with fatigue.

One year ago, I was struggling to manage the side effects of chemotherapy in 30 degree heat. Today, I am struggling to manage the side effects of chemotherapy in 30 degree heat. Sweat, it would appear, is my constant companion. One year ago, I was in the Macmillan Cancer Centre on Huntley Street, where I also happen to find myself today. The difference between the 17 July this year and the 17 July last year, is that last year, I had a stem cell transplant.

The difference between then and now, my friends, could have been so much more. Two months ago, it was.

Events of the last month have made any celebration of the date worthless, and even the acknowledgement of the date seems futile. Sure, I got a few good months and a holiday from it, but I did not get enough. Realistically, I am not sure if I would have ever been happy with the inevitable relapse, but I would have liked very much to have celebrated today. To me, unless I was going to go down the path of self pity, which I do not feel like doing, the only point of worth now is recognising that Tottenham Court Road remains as equally vile in this heat as it did in 2013.

Today could have been something special, something worthy of cake and balloons and a bottle of half price prosecco. It is not though. Instead, today just happens to be a day where I have a clinic appointment, will fight my fatigue before socialising for 3 hours before the fatigue sets in again and I need my bed, all accompanied by a particularly bad twinge in my back because I decided to pick up the bath mat this morning. Today then, is just another day.

No parties. No celebration. Just myeloma.

EJB x

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Inside I’m Dancing

Once upon a twenties, there was a girl who loved nothing more than dancing and sweating whilst dancing and grinding and say then day that particular movement was dancing. Said girl’s only aerobic exercise for a long while, was the dancing. The pleasure she would get from the shuffle to a deep base would be evident when her hands would creep up over her shoulders. She was no ballerina. She did not have the elegance of a ballerina. Her dancing usually was reserved to prancing around her bedroom in her pants or it was directed towards a DJ booth. She had rhythm. Unsightly rhythm.

Said girl no longer dances. Not really. She has lost her rhythm. Her movement is restricted to a wobbly shuffle that she calls walking and that only occurs because she is heavily medicated. Her government has assessed her and deemed that she should only walk 200 yards at a time, thus pulsating her radiotherapy experienced hip really is out of the question. If she did not find twerking distasteful, the cement in her spine would still be a reason enough not to do it. Her arms are similarly weak and as sometimes these limbs cannot be raised above her shoulders, the distinction for her between walking and dancing, she felt, would be slight.

People adapt obviously, and our heroine has become partial to some private bed dancing, which is much cleaner than it sounds. It involves lying flat on a mattress, a bed really because she would struggle to get down on a mattress, and then wriggling her feet and hands. The activity usually takes place when the lady in question is intoxicated and attempting to recreate the euphoria of yesteryear whilst proudly listening to Katy Perry’s Fireworks. For her, this activity is still rare.

Rarer still is any form of publicly busting a move. Walking with a stick in hand is embarrassing enough for her as a 29 year old experiencing London nightlife, but dancing, her new ‘dancing’ would be impossible. Living in her brittle shell makes it difficult for her to experience London nightlife, so she would be unlikely to open herself up to the danger of being pushed and prodded on a crowded and slippery dance floor, when she is already having to manage the increased danger from the public that emerges through alcohol. There would be murder on the dance floor.

The loss was felt, until one day, after a few sherbets, in a room protected by her dear friends, she danced. For ten minutes before having to sit. She did not grind and she did not twerk, nor did she throw her hands in the air like she did not care. Importantly, she did not want to stand on the sidelines feeling self conscious and grieving. Deprived of obstacles, armed with her stick for back support, she moved from left to right to the sound of a beat. There was some backwards shuffling and even some sort of movement with other people. With stick in hand she moved from side to side. And she smiled.

Nobody bashed her and nobody drunkenly grabbed her neck and pulled it down because they were a moron, and nobody attempted to twirl her. She moved and she adapted.

It hurt her like hell the next day though, but if anybody were to ask her, she would have said that it was worth it.

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The Reluctant Complainer

In my mind, I like to think that I am not a complainer. I imagine that I am a picture of English manners and/or passivity. I worry that when it comes to my hospital, I am not seen through my own rose tinted glasses. Sure, on the rare occasion, I may have been vocal about the delays in Daycare, but only on one occasion was I shamefully rude about said delay and I did apologise for my reaction a few days later. Telling people how much they bruised you after they have put a cannula in, isn’t exactly complaining is it? By the same token, telling a few people that a Senior Medically Trained Person has poor people skills, is merely an observation.

I am worried that I am perceived to be a complainer, because whenever my life is interrupted by delays on the 2s now, at least three people apologise to me and more often than not, one of those people is the Medically Trained Person in the fancy Blue and Red outfit. It is of course polite for them to apologise, but there were no apologies to that extent when I was on PADIMAC and my treatment could take four or five hours. And so, I fear I have an unfounded reputation for speaking my mind.

Okay, I did write three letters of complaint to my GP when I was diagnosed, but that was to my GP. I am not one to complain to the lovely people who have taken care of me and continue to take care of me so well over on Huntley Street.

I mean, there was the time I demanded to see the head nurse regarding the quality of the nursing care at the National Hospital of Neurology and Neurosurgery, but that complaint was warranted, because the care they could be bothered to provide really was dire. I followed up my concerns in the ‘other comments’ section of the UCLH survey to boot. Twice.

I really do not complaint. I try to remember the manners passed down from Mamma Jones and, let us face it, I’m very passive.

I suppose my comments to multiple Medically Trained People when I was admitted to hospital during my transplant, could be interpreted as complaints. I was pooing a river and hallucinating green giant lemmings attempting to escape from my stomach by drilling holes with wooden spoons at the time.

The care I receive truly is tremendous. Everybody is super duper nice to me. I like to think this is because I am nice and not because people have secretly badged me as the opinionated fat one with myeloma.

So, as you can see, I really do not complain. I am ever thankful for the care I receive in that wonderful building on Huntley Street. It pains me to think that others would assume anything else when it comes to my being.

That said, a month ago there was an actually an incident that did require complaint. I actually complained. To this day, I feel most guilty about it and I have not stepped foot in the section where the incident occurred since. In short, My Second Favourite Blood Taking Person, whose demeanour is usually so calm and collected, shouted and swore at me whilst directing a needle at my arm. There is more to my tale, but all I will say is that it was unprovoked. I have a witness.

I was not going to complain, not because I am not a complainer, but because I feared it would make me feel uncomfortable when I make my fortnightly journeys downstairs to the Lower Ground floor. I am inherently selfish, so I did not consider the impact had he shouted at somebody else and not me, who as you all know, is as hard as nails. I eventually realised that I already felt extremely uncomfortable about visiting the Blood Test Room because of the incident itself, and when I realised that, I wanted to tell somebody simply because it should not have happened and I should not feel this way about having to have my blood taken. It definitely should not have happened in a cancer centre. The centre is not the place to feel awkward. Just ask their decorator.

I went to a magical window called PAPs in the hospital’ Tower, where I was told that because of what I was alleging, it had to be a formal complaint. And here in lies my guilt. I feel guilty for having to complain and now I am afraid to show my face, not because I fear everybody in the Blood Test Room are now going to be intent on bruising me as much as they can, which I do, but because I am embarrassed. I am very embarrassed about it all.

I am told that I will receive an apology when I next go in, that creates more embarrassment. The thought of it makes me want to convulse in an overdramatic and unnecessary way. I do not want an apology, I want it to have never happened. My Favourite Receptionist has offered to come down with me, which is nice. Clearly, I do not know if this would make me feel more awkward.

Tomorrow, I am going to go and have my bloods done and I will have to keep reminding myself that I did not want to complain. I am not a complainer. I am a reluctant complainer who occasionally does not think before she speaks. Maybe I’ll get that on a t-shirt.

EJB x

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Mission Complete

At approximately 17:40hrs on Saturday 19 October, I completed the challenges of challenges. I claimed my Everest. I proved myself wrong. In 11 days, I watched 16 feature films and 22 shorts over 19 screenings and I did it all by myself and all without falling asleep in the cinema. To say that I am proud of my achievement an understatement.

I am very proud of myself.

It was not a walk in the cinema, let me assure you. I had had to rely on something known as a taxi more than I would have liked, I fell asleep on the bus in the middle of the day, I became the fidgeter of all fidgeters, suffered severe back pain and there were even a few times when part of me would have preferred to stay on my bed watching films made before 2011, but I carried on. I got my bum to central and East London’s finest cinemas on time, and I relished every moment of it.

At the start of my quest, it was about me defeating my fatigue and thus My Myeloma by doing something I wanted to do, with the cancer tagging along for the ride because these days, I have to accept it’s presence. Just before the halfway mark, and this is the reason I stopped blogging about my daily screening, I found something that was so much better than what I was trying to prove to myself by sitting in the dark. I found pockets of time where I did not have to rely on other people to make me feel good or valued, something I think I lost sight of in recent months. It was all on me. Sure some people had to make the films I was watching (I am not on that many drugs), but I did not need them to hold my hand throughout the screening. I did not need them to carry my bags. I did not need them to support me. I did it all by myself. I stood on my own two feet for 11 whole days.

For those 11 days, with each screening, my brain was able to think about something more than myeloma, in fact, with the exception of the fidget and the need for morphine, LFF offered me at least 40 hours that were completely myeloma free. 40 hours! That’s 40 quality hours of concentration and thought. I did not think about my paraprotein level, I was following somebody else’s story and when I was not doing that I was reaching into my mental library, searching for influences, taking notes, analysing the themes and pondering the thought process behind an aspect ratio. It was bliss, even with the depressing ones.

It is said that cinema is a powerful medium. More things are said about cinema to be sure, but I thought I would point out the obvious. Film is much more than that to me, and when I attach so much meaning to everything now, my experience at LFF is so much more than that. My very expensive annual challenge reawakened something that I thought was dead. It’s indescribable, despite my poor attempt at doing so. Imagine a montage, with several images of me looking brain dead and confused leading towards images of me alone in the dark, wearing various wigs, looking engaged, thoughtful and happy and with each shot my eyes brighten to the point of sparkle. It would need a good actress to pull it off, but I think I am game. The accompanying score would be saccharine such is the power and subtlety of the movement.

Of course things have been adapted for My Myeloma, the taxis and lack of socialising outside of LFF proves that, but at the same time, I probably learnt something that you all knew already and that was not everything has to make a concession to myeloma. Not everything about me has to make a concession to My Myeloma. I do not know why I did not know this.

One week later and I still suffer from fatigue, but I feel stronger than I have for a long time, even with a cold. Crucially, I have stopped crying everyday.

The power of cinema…

EJB x

In case anybody is interested, I saw the following: Captain Phillips, The Spectacular Now, Vic + Flo Saw a Bear, Computer Chess, Nebraska, The Double, Ida, 11.6, Like Father Like Son, Me Myself and Mum, Sarah Prefers to Run, May in Summer, Heli, Don Jon, The Grandmaster, Drinking Buddies and three sets of shorts.

The day after it was all over, I took myself to the cinema. FYI.

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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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The Cell

Since I was diagnosed, I have frequently complained about feeling trapped by My Myeloma. I have likened my flat and my body to prisons, because of the limitations and loss I associate with them. Saying that, I have never spent seven days in my bedroom and my bedroom alone. My transplant allowed me to experience that. Pure isolation. Life in a gaol. Seven whole days in one 3 x 3 metre room, without stepping foot outside the door; I didn’t even open it. I entered my current cell, Room 7, on Monday 22 July at approximately midday and I did not leave that room, via the double door protection, until Monday 29 July, when I left for less than hour to have a cup of tea. I returned there and here I still remain, although, I was able to leave it again yesterday to shock people with my hairstyle on the ground floor. The corridor really is a magical place. It’s basically Disneyland for me, full of excitement and discoveries.

I have spent a long time, an age it seems, unable to fathom what the temperature is like on the street outside. Is it hot? Is it cold? No idea. I am on the Thirteenth floor in an air conditioned abyss, oblivious to the outside world, bar for the faint him of traffic.

In the deepest darkest pit of transplant illness, I did not care that I had not left the room, the thought did not even occur to me and if it did, I did not perceive it to be a negative. I may have got slightly frustrated by the noises outside my doors and wondered what the hell was going on, but I was too ill to care. With regards to me room, my main concern was whether I had the time and physical capability to navigate my way out of the lefthand side of my bed with my bag of fluids, to the toilet on the righthand side without bashing the big blue share in the righthand corner of get trapped in the base of the blood pressure machine at the top right of my bed. I would also have to target myself through the door, which for some reason, opens out wards, which is not entirely practical, when the movement of a being, also includes a trolley and wires.

By the weekend, I may have been getting slightly bored of the view from my bed, and the multiple notices on how to wash hands correctly, so I made Big Sister personalise my notice board. Personalise she did, but there was no escaping how clinical this room is and how it is not my own space.

As I started to become stronger, the smaller my room feels. It has become claustrophobic and the walls appear to be creeping in by the second. The problem is, now, I cannot help but notice how many people come in during the course of the day. Some knock, some don’t. It seems constant. Don’t get me wrong, I am most grateful that I have a private room and I am definitely appreciative of the attentive Angels, I just want more space. I want a different room.

Room 7 is blue. Several shades of blue in fact. Perhaps it is to match the nurses’ outfits. It is clean. Very clean. The room comes fully equipped with a hospital issue television (£7.50 for the day or £40 for 10 days, bargain), a refrigerator, a bed, a sofa bed, a chair, a sink, a toilet and shower, six signs telling me how to wash my hands, a table, an alarm or three, a whiteboard and thankfully, a view. A very nice, sanity saving, view to be sure.

As much as I hate this room now, I know it has serves me well. It has served me very well. It did not get mad with me when I defecated on the bed, nor did it smell. The room kept me safe and cool during this heatwave, which is good really, because I did not bring a razor to shave my legs. I didn’t think I needed to. I was wrong.

And so, I give you Room 7, all 216 hours of it. It’s a bit monotonous.

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Medical stuff

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The bog

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View from a bed

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Primrose Hill is in there somewhere

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I cannot wait to see my second bedroom tomorrow. The bed may not be connected to mains electricity, but I do not care. Bring on the double. My arse needs it. I also need a widescreen television, my life of relative privilege demands it. I really cannot manage these portable viewing platforms…

EJB x

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