Monthly Archives: March 2015

The Monologue

“Transplant, transplant, transplant, transplant, transplant , transplant, transplant, transplant, transplant, transplant, transplant.”

Hello there, if you wondered what the above was in reference to, I can confirm that that is my constant internal monologue, and it has been all week. It started on Monday. The countdown to my transplant started when I was given the provisional date, but what I would call the real countdown, full of irrationality, interrupted sleep and attempts to open a Spotify Premium account only really started this week. 

This morning, I woke up ridiculously early after a dream about having to do a last minute piece of work, a piece of work I managed very well FYI, at the place I worked as a bright eyed and eager teenager. The dream  also featured a lot of drinking , which meant I was thirsty, but that has no bearing on this particular tale. Although vivid, it is one of the better dreams I have had this week. The one that kept me awake on Sunday night was my classic anxiety dream. I was at school and I had not studied for my GCSE’s. The difference from the usual set up for this specific dream, was that I had myeloma in it and on top of managing that and my panic at having not studied, my fellow pupils were being inconceivably mean to me. The dream ended and thus my sleep with it, by me entering the Reception crying, telling the Receptionist that I could not go on, and then I turned my head to see Bruce’s bat ears and his walking mate coming to take me home. Monday and Tuesday just featured forgettable, but sleep depriving nightmares. I do recall me falling quite a distance in one of them, I might have been pushed… On Wednesday night I slept, but I wager that was because I had had an 11 hour day.

The point of this blog is not to tell you about my dreams, but it is to tell you that this week, I am feeling what I  imagined I would  feel this week and that is a barrel of various things that all amount to anxious. I am scared, quite scared actually, paranoid, preoccupied, sleep deprived, irrational and emotional. How is that for a toxic mix of feelings? My company is the best.

To be fair to myself, I think outwardly at least, I am managing it all slightly better than my list above implies. Well, as long as nothing else rocks the balance like running out of Bran Flakes. That however, is only because today is Friday and not Tuesday when my internal monologue was at it’s loudest and most booming. Plus, when I feel this way, I am more likely to be quiet around others than sob whilst bashing my fists against the floor.

By Tuesday, after a long weekend, I was convinced, in part due to an unresponded email, that my transplant was going to be postponed. I had convinced myself that the appointment I had the next day was not going to tell me that the tests I had the previous week were fine and I was transplant ready, but something quite the opposite. Something quite bad. My appointment on Wednesday did not tell me that, it told me what my rational side was telling me all along, and it is a truth just as frightening to me as my not so illogical, fictional journies of anxiety. Do not forget, I did have one previous transplant postponed at a time when I believed it to be a dead cert, and that leaves a deep scar that even Bio Oil couldn’t irradiate.

Although I have calmed down somewhat, I am still sleep deprived and faced with the fact that bar me getting a bug of some sort, I will be going in for a transplant in five days. FIVE DAYS! Do you know painful one of those is? I do, at least I think I do, for I do not trust my memory. I have either overestimated or underestimated the various pains I am going to feel, I just do not know which. I could, of course, have remembered it all exactly how it was and it is not a pleasant experience to remember. All I know is that it is coming… Hypothesising about how the SCT is going to go this time, what day I will leave ambulatory care, how long I will be in hospital, just makes my head hurt and my tear ducts open.

“Transplant, transplant, transplant, transplant, transplant , transplant, transplant, transplant, transplant, transplant, transplant.”

It is true that I do know roughly what to expect from the autograft, I do not know what is going to happen with the allograft. Some might, quite reasonably say to me that it is at least three months away and I should not be concerned with it, but this week I am not rational. As the monologue and countdown continues, I know that I have five days and five nights of (reasonable) health left. Thereafter, as long as there are no delays, an event of which I am in constant fear of by the way, my life is going to be all about the transplants indefinitately. Actually, they’ll be all over me and I cannot estimate when the time will come again, when I am going to feel fit enough to venture anywhere alone. I have a countdown to losing my freedom. A Twin yesterday likened it to a prison sentence, one of the indeterminate sort.

Next m Wednesday marks the start of something that is going to be long and arduous, which has an unknown ending. When I see that written down, I can see why this week is proving to be such a hard slog for me. 

Take the emotional tasks aside and I am also a person who has five days left to ensure that she has a fully stocked entertainment unit for the hospital, which includes somehow restoring her accidentally lost iTunes collection. On top of that mammoth task, I have to get photographs printed for the notice board, finish making birthday cards, tidy my room, rewash all my pyjamas, find Doggie, fix and clean EMan, pack, go to the British Museum, have planned fun, clean soft furnishings in the lounge (added to the list yesterday), make sure the delivery yet to arrive due to insufficient postage is in fact the 2metre Apple approved phone charging cable I think I ordered and finally, buy some cheap black pants. You have no idea how huge these tasks seem to me. It’s an epic mountain of completely essential tasks, similar to the one I made before my last transplant about defrosting the freezer and sorting the cupboard of crap, only, way more important and less optional. Let us not forget that these are all things to do on less sleep, with heightened feeling and an air of mania. 

On Wednesday, I was asked quite seriously and enthusiastically if I was looking forward to my transplant. To which I responded “yes and no”. One couldn’t really ask for more than that response to such a huge question right now, but I will try…. A few hours earlier than that silly question fell at my feet, I cried to my counsellor and expressed my fear that all this impending illness could be for nothing. I then, reasoned that if I did not do it, noy go through with it, the failure I fear so greatly, would definitely happen. At the time, I thought my revelation was inspired. Inspired maybe, but I still have an uphill climb followed by another uphill climb and I am sure I’ll lose that path along the way.

Over the long and incredibly short, next five days and I am going to try to hold on to some of the inspiration I found on Wednesday afternoon. It is inevitable however, that I will struggle with it as I have done since I woke up in the early hours of Monday morning.  There is melancholy around every corner. Everything, even Housemate waking me up this morning is a reminder of what I am going to miss.

In conclusion, I am terrified and conflicted about my treatment starting and I wish I did not have to go through it all again, knowing that this time the experience and pain is going to be multiplied by at least 2.5. I know I have no other option. I know it is the best course of action for me, but this week, I feel really sad and angry about that.  I am grieving the things I am going to miss whilst I am doing it. 

Come Wednesday… well, I have to be ready, don’t I?

EJB x

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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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Veet

As part of a harebrained scheme to enjoy my final ‘healthy’ weeks before the transplant plans, I opted to take my steroid dose in one go, on Monday 23 February and ending four days later. That was four whole days of a lot of dexamethasone. Something I have done many a times before, but I soon discovered that it was different from the befores. My tried and tested theory was for me to get the big crash out of the way, so I did not need to worry about the pesky little mini crashes that I have become accomstomed to since Velcade was reintroduced to my life in December, which in turn would allow me to enjoy myself. I knew it would take me down, and I had planned to just let it, and silently will it to disappear as quickly as possibly. Vite, vite. 

Despite it being a tried and tested formula, I failed to fully realise what four days of steroids would do to me after eight months of non-stop chemotherapy. The result? Persistent ugliness. And I mean ugly. I mean five days of my bed, sweating, lots of carbohydrates, bad breath and swollen glands. Last Tuesday was the sixth day, of the crash and I congratulated myself for getting dressed with my trusty Rubywoo on my lips, but I after a two hour trip to the hospital for a dose of Cilit Bang, my energy was spent and it was back to my sofa for some blanket time. We’re it not for the hospital and the fact that I did not want the cleaner to think I was a slothenly sloth, I would have happily gone for a sixth day of flat bound cosiness. 

All reason told me that the crash was going to end, but it took me down to such an extent that I could not see how it was possibly going to end. When I started to write this blog a week ago, I wrote that “with the benefit of hindsight, I probably would not have decided to take this vile poison the way I did, because the take down was beyond something I imagined and could take.”

One week later, with the benefit of hindsight, I can say that despite it not being quick, I did absolutely the right thing. I find it interesting that last week, I documented my frustration. Now, I do not recall feeling that fed up with it all. I can almost look upon it fondly, like something made to deliver self indulgent anecdotes to friends. 

Housemate, do you remember the time I did not leave the flat for four days and did nothing but lie on the sofa watching mediocre films and eating crisps? My, that was a hoot wasn’t it?”

See? It’s a story with legs.

The four days I stayed in my flat, I was somewhat impressed with myself that I managed to shower everyday. I did not get dressed in the sense that I was wearing clothes I would be happy for people to see me in public, but I did put on the trusty trousers with an elasticated waist and my, did that feel good. When I was not looking at my television or the inside of my eyelids, my view was this (well, in colour):



I can say with complete certainty that one creature appreciated my crash.

One of downsides of not having the energy to leave the house, is grooming. Or the lack there of. As a long time steroid abuser, I suffer from an unfortunate side effect in which my face becomes inexplicably prickly. Prickles that become more noticeable when applying makeup is forgone because doing so would require an hour nap afterwards. By the Sunday, my third full day in bed, the black prickles became too, too much for my slow brain to take and Housemate was selfless in his kindness. He walked for three whole minutes to Boots and came home with a packet of Veet Facial Wax Strips, which he treated me to, so I could de-fuzz my face. Do you know what that gave me beyond the obvious removal? Another anecdote.

Mamma Jones, Housemate went to Boots today so I could remove my beard.”

See? 

As for now, six days after the crash ended, I have some energy. I’ve been able to socialise and process some thoughts beyond those of self pity and thoughts of no escape. For now at least. I am well aware that my six day crash is just a precursor for what is to come. If I wanted that to go away quickly, I cannot imagine what I am going to feel like post transplants. My despair last Tuesday scares me, because I have more than six bad days ahead of me. On the otherhand, my feelings post crash is a buoy. I mean, just think of the possible anecdotes…. And Bruce snuggles.

EJB x

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