Tag Archives: stem cell transplant

The Sweet Spot

I was tempted to entitle this blog ‘My Life Lived in Fear’, but after some reflection, I decided that some could perceive that to be melodramatic. That said, I am prone to a dash of daily sensationalism, so I couldn’t not tell you. The blog’s working title concisely and accurately summarises this current stage of my life. I am left in no doubt that if somebody were to make a mediocre biopic about my life, it would be described as a paranoid melodrama. I am constantly, metaphorically, looking over my shoulder readying myself for when the other shoe drops. Since August 2012 so many shoes have fallen out of sky, walloping me on the head during their decent that not expecting another dreaded, earth shattering wallop is impossible. Unlike the previous shoes, the next one will be the last one and most dreaded. The next one will to be steel capped. 

Wait, I am getting ahead of myself… 

March and April seem to have past me by in a post flu, get my life back on track sort of haze. March was taken up with such intense fatigue that I really did not notice the month passing. I felt things improve in April, celebrating when I realised that I had managed to spend nine consecutive hours not in my flat, and survived. Progress, I thought. 

Medically, as far as I am aware, I could not have asked for a better response to the transplant. It is difficult for me to write those words, as they are words that really ought not to be uttered.  I do not want to tempt fate. Five weeks ago, after inspecting my results and my mouth, a Medically Trained Person said that I was in a “Sweet Spot”. For those of you not in the know, this means that I have just the right about of Graft vs Host Disease and my results are good. My initial thought at his diagnosis, was panic. He’s labelled it in such positive terms that he has invited things to go wrong. 

Two days later, I pain in my left ribs suddenly appeared. A familiar pain, one that I wished I would never feel again and one that interrupted every possible human activity. I’m not ashamed to say that I panicked at this development. My active imagination was half in denial and half reconciling myself to the inevitable. Except, it was not the inevitable. It was not a broken rib caused by the return of My Myeloma; it was a suspected pulmonary embolism. Two nights in the hospital, two x-rays and a CT scan later, the Medically Trained People found that I had a chest infection. Another infection! Another week and a course of antibiotics later came with the diagnosis of pleurisy, which they say, was probably brought on my February’s bout of influenza. 

A reprieve. 

A reprieve and a lesson to me not to always think the worst. And yet, those thoughts are never really far away. It’s a daily battle. I do not want these thoughts to be so readily available to me. I do not want self pity to be my constant companion. 

I am working on it. 
In an ideal world, I would be able to enjoy the Now and not worry about a depressing future. My world is not ideal and there is another side of me that feels torn.  I do not want to be underprepared. I described it to my counsellor as a form of self preservation. Before my last relapse, I let my guard drop. I was back at work, I had planned something more than a month ahead and I did not see it coming. I was devasted. My relapse was life changing and it’s consequences went far beyond the physical. Devastated.

Like I said, I am working on it. I do not want this to become I self fulfilling prophecy. I dread the idea of somebody telling me that I brought it on myself by not thinking positively. To people who may think that or have other pearls of wisdom, I say to you, live it. Live the past four years of my life and then tell me how I should feel. Evidently, this is a touchy subject. Even these imaginary conversations make me see red.

Relapse is my main concern but it is not my only hurdle. I went for over three years only being hospitalised for diagnosis and transplants. Sure, there were a few trips to A&E in between but my overnight stays were limited. Now, I have been admitted to hospital twice in a six week period. How will this develop? Will I end up missing more birthdays and Tuesdays in my future because I have a weak immune system? You betcha. It’s an unpredictability that means that my immune system is not the only thing about me that is weak. 

In an attempt to turn my frown upside down and reduce my worry lines, I spent two weeks trying to get as comfortable as the bed of nails allows. I really did, and then there was another incident that irritated my paranoia. Enrage my paranoia more like… It was an incident that led to me vocalising my worst fears and led to my family revealing to me that my worst fears are theirs also. 

On a Wednesday, I attended my now three weekly appointment at St Bartholomew’s Hospital. At these appointments, they take my blood and my pee and chat to me about my previous results. At this specific appointment, I explained that I could now move without experiencing horrific pain and the Medically Trained Person reduced my dose of steroids; drugs I am given to keep my GVHD at bay. It was a positive 15 minutes, despite the frantic worry I experienced before it when I was told that my appointment would not be cancelled as a result of the Junior Doctor’s Strike. My pre appointment fuss went something along the lines of why didn’t they cancel this appointment when they cancelled a previous appointment when the doctors were striking.* Why? Clearly there is  something in my results that they need to discuss with me. Then cue, no constipation worries or sleep the day prior to my appointment.

I left St Bart’s  happy. The next day, a Thursday, I had my three monthly appointment at UCLH. A cause for excitement if ever there was one. Approximately an hour before my appointment, I received a phone call from a secretary at the hospital telling me that I had to go in for an appointment. In her confusion, she said I had to come in because my doctor at Bart’s had phoned to speak to my doctor at UCLH to discuss my results and those results had to be discussed with me that day. I took a deep breath and all those thoughts I had been fighting to not have, pounded out from the rock I had hidden them under and sheer, all consuming panic set in. It was a sweaty, shaky, two and a half hours of utter dread. This is it. 

When I eventually saw the Medically Trained Person, I had already explained to another how I felt. I was almost manic. I discovered that the Medically Trained Person from Bart’s had indeed phoned the head of UCLH’s Myeloma department to discuss my results. He had phoned to tell her how happy he was with my results. In short, he had phoned her to boast about my results. To boast! It took more than one exhale to get over that. In fact, nearly two weeks on and I still think I am recovering from it. 

Never in my wildest dreams did I imagine that the reason behind that phone call was to boast. I thought the worst, like I apparently always seem to do. A revelation that brought along it’s own set of neuroses. 

According to my counsellor, all my feelings are normal. I take some comfort in that. Remission does not mean that I am free, but I know that it also means that I should be able to let my hair down occasionally. It’s not long enough for that yet; I’m not a superhero. All I can do is try and my sanity needs that. My new management technique involves scheduling in time for the bad thoughts and then to banish them until the following scheduled time. I have chosen to do this on my commute. This is my commute. 

And this is my Sweet Spot. It’s a chemotherapy free, work in progress.
EJB x

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Sweet Dreams

I have just been awoken from my sleep, and as I begin to type this in the bright lights of my bedroom, it’s 04:50hrs. I am awake not because I need to urinate, despite that being the most common reason for my sleep being interrupted. 

I was forced out of my sleep tonight because my upstairs neighbours woke me up with their loud and drunken behaviour. A familiar and loud accented squawk accompanied by banging. Once awake, I discovered that there were mice in my bedroom, because, like a detective, I spotted droppings on the floor at the bottom right corner of my bed. 

Housemate interrupted my stress over a poo that was not my own, because he too had heard the ruckus upstairs. He came into my rdressed in his jeans and patterned T-shirt ready to tell off our younger  neighbours. We spoke about how inconsiderate they are, and how old they must think we are. I explained to him that I had already dealt with the noise and had asked them to be quiet by up shouting to them from my open bedroom window. They had sheepishly responded with an apology, and the noise started to fade. 

At this point, I looked down at the mouse droppings to find that Colin’s canine companion, Bruce, had urinated over the mouse droppings and thus my carpet. I’m not talking a small amount of wee either, it was a river. I really smelly river, that had burst its bank and stained my bedroom wall. I cleaned it by stomping on tea towels, whilst Housemate teased me about my irrational fear of mice. Towards the end of this thankless task, we saw a mouse, which we chased, caught and flushed down the toilet. As he was now fully awake, Housemate decided he might as well stay dressed for the day and put his laundary on, which I warned him was antisocial. He didn’t care. If it woke the presumably by-now-passed-out-neighbours-upstairs, it woke them. Tit for tat. Unable to reason with him, I came back to my room, where I saw another mouse, one bigger than the one before. I gave chase. 

I followed the furry creature into my kitchen, where I found Bruce under the kitchen cupboards  with a mouse trap stuck to his noise and a box I recognised as poison in his mouth. I screamed and called for Housemate. When I looked back down, Bruce was no longer in his usually form of a red Boston Terrier, he was a child. He was my child. The mousetrap had gone, but the poison remained. We were surrounded by several mice, although they had taken the form of a minature panther and two Border Terriers wearing collars similar to that of Jock’s from The Lady and the Tramp

I asked Bruce how many poisoned pellets he had eaten, and he told me he had eaten just the one. I calmly asked him again, and he apologised for lying and admitted to eating what had become  five poisoned biscuits. I screamed for Housemate to call 999 for help. He ran into the kitchen clutching his phone and as he did, Bruce, my child, died in my arms…

And that is when I really woke up. 

Like in Dallas, it was all a dream. 

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Waking up crying, scared and/or confused does not happen as frequently as my post menopausal body wakes me up to toilet, but it does happen  frequently enough for it to bother me. The nightmares, for that is what they are, started shortly after my transplant in July. Back then, all those several days ago, it felt like I was having one a night but it probably was not that bad. I remember the noteworthy. On more than once upon a dream, I woke up calling for my Mum. Mamma Jones subsequently installed an alarm in my bedroom at her house, so I could contact her should I need her to comfort me during the night. I am 31 years of age. I raised the shouting for my Mummy with my counsellor and she said it was a very human reaction. Given the fact I have had two bone marrow transplants this year, and I have myeloma; I’m not beating myself up too much about shouting for my mother in this way. Plus, I have never used the alarm for dream related issues. For a glass of water on the other hand…

At one point, the dreams  were happening so frequently and were so unpredictable in content, I did not and would not sleep in my flat alone. Even now, even with knowing what they are, I do not feel confident being completely alone. It’s not why Housemate got his dog, but he comes in handy.

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I’m a little hazy when it comes to the exact timing, but I think it was three weeks after I came out of hospital that I mentioned the nightmares to a Medically Trained Person. I did not want to mention it, because I thought I was having them because I was stressed by the act of having an allogenic transplant and all the other crap that goes with it. In short, I did not want her to think I was having a breakdown, but I am glad I did. Her response put me at ease. To my surprise, the MPT was not surprised by the fact I was having nightmares. Apparently, so she said anyway, nightmares can be a side effect  of taking Ciclosporin. I take Ciclosporin! I also take diazapam and morphine. Put them together and what do you get? Bibbidi boddidi boo.

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The problem with my drug induced dreams is that they always begin firmly based in my reality. They often spiral beyond my reality, but by that point, I am hooked and convinced that it is all true. I am not going to list every bad dream I have had, in part because I feel like it is like somebody asking to look at my personal music library. Private. I don’t want people to know what scares me anymore than I want you to know that one of my most played songs is ‘Music of the Night’ from The Phantom of the Opera. For this tale, you just need to know that they occur and that they are realistic. You do not need to know who has ‘died’.

Fortunately, despite the fact I have had to turn my light on tonight and I will subsequently require a nap later today, the frequency of my nightmares has reduced. Somehow, I have managed to replace most of the nightmares with vivid dreams. Dreams that are not scary or sad, but dreams that seem to make me tired when I wake up. It’s a lesser of two evils. Occasionally, I will enjoy a dream, but most of the time I wish I did not dream at all.  I (falsely) imagine that if I did not spend so much time dreaming, I would need less sleep (or at least, I would have more energy).

Another downside to the vivid dream, is deciphering what is real over what is a dream, or what my predictive text just wrote, ‘dreamy’. The line between sleep and the mundane seems to be constantly blurred. Yesterday morning par exemple, I was convinced that Housemate had had to wake me up twice. It turned out that I had dreamt about the first knock on my door, letting the Bruce in and our chat about the weather. The weather? What does it say about my imagination that I dream about having a conversation about the weather?  I think that question best kept rhetorical.

I do prefer a mundane dream over a nightmare, but there is always a longer time delay before I  realise that it was just my imagination running away with me.  There have been days when I will go for most of the day believing I have spoken to somebody, replied to a text message or completed a task I set myself, when the reality is quite the opposite. Do not be alarmed, for I am told I am completely sane. 

My occasional confusion is easily done and justifiable, and I am not biased. Many a pesky dream starts with me being woken up from a dream. Dreams within dreams. It’s a great concept for a  clichΓ©d packed arthouse film. Of course, I would have to dream up a dialogue far more riveting than a weather report.  

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One day, I heard my doorbell ring, so I woke up and head to my door to answer it to find nobody there. I returned to my bed, where I was surprised to learn  it was only 06.30hrs and the doorbell I heard was not my doorbell. It was not the sound of my doorbell. It was a dream. I have never been a sleep walker, so I found this to be borderline entertaining. By the time I woke up in my bathroom with my mobile phone in my hand ready to take a photograph, I knew it could be entertaining. I had dreamt that I had to take a photograph of the New York City sunrise from the window of my hotel room. I was slightly disappointed when I realised the only view I bad was of the windowless corridor in my flat. Another time, less entertainingly, I dreamt that Housemate had returned home after a night out and decided to have a bath. I woke up slightly later to find the lights on in my flat. My conclusion was that he had drowned in the bath, so I got out of bed to confirm there was a corpse in the bath and happily discovered that he had yet to come home. It was quite the relief, for I really did not want to see him naked.

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I hope, no, I dream that soon I will be off the Ciclosporin and that these sort of nighttime interruptions will cease. Nightmares and vivid dreams were not listed on my pre transplant consent form as a possible side effects. A definite oversight. It might not be Graft vs Host Disease or a secondary cancer, but they have an impact. A deep impact. Thank goodness I am as tough as nails. 

Right, I best try to go back to sleep. I think I have done enough now to forget about my dead dog child. I am not going to lie to you, I long for the days where I am only ever rudely awaken by the dustman. 

β˜€οΈ

EJB X 

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18 is a Magic Number

Just over four weeks ago, on a Wednesday evening, I sat on my sofa brimming with excitement. I really do mean brimming. My cup was running well and truly over. There was so much excitement in my belly that I felt almost giddy. In me, giddiness general manifests in mumbling to myself and occasionally rubbing my hands together like I have just hatched a masterful plan. The cause of my excitement was not because it was the evening of the Great British Bake Off final and Housemate and I had settled in for a night with a takeaway, although that sort of thing does stir my loins these days. No, my excitement was due to the fact it was the eve of my annual film marathon. It was the eve of the London Film Festival. I wrote a very similar blog last year, and the year before that, so you could just re-read those instead of reading on. 

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Still here? Grand. 

This year, unlike two years ago when I was also post transplant, there was no question in my head of me not partaking in what is a film lover’s paradise. I may have had two transplants this year, but going into that treatment, I simply told myself that by October, I would have to be ready to see one, maybe two films a day for eleven consecutive days. I did have to give consideration to my stamina, so I had long concluded that if, at the time of booking, I thought I might struggle, I would give myself a day or two off during the eleven days. But, essentially, by hook or by crook, I knew that I had to get my bum down to Leicester Square, at least ten times. My mental health depended on it.

To those with able bodies, this might not seem like that much of a challenge. Mamma Jones tells me that it is, but she’s my Mum and she has to say things like that to buoy my ego. It is now 17 days after the festival finished, and I can confirm that it was definitely a challenge for both my body and my mind. Put it this way, I no longer think I am just in recovery from an allogrnic transplant.

Prior to the booking lines opening in mid September, I set myself a realistic limit of 12 films. In reaching this calculation, I factored in how much activity I had been doing, how many films I saw the previous year (20), financial considerations and the overall weaknesses of my body that I endure daily. When the booking lines opened, I disregarded all of that and  booked myself in for 18 screenings to start on 9 October and finish on the 19 October. My response to this momentary lapse in control was ‘whoops’. The Bank of Mum was the official sponsor of my film festival, providing financial support as well as daily cheerleading throughout the process.   Inevitably, as I sat on the sofa waiting for the GBBO to start, I booked in another screening, bringing my grand total up to 19 screenings, because my giddiness had made me feel ever so slightly invincible.

To many people, including myself, there is a little bit of the ridiculous about how I approach the film festival. I got carried away. I really, did. The London Film Festival no longer simply represents an annual period of cultural indulgence. It’s become how I prove to myself that my will still has some say in how I conduct myself and spend my time. That is an important thing to remember every day, but LFF is a handy reminder that even if my grip is weak, I must still cling on to the things that make me, Me. I am not just a Myeloma and chemotherapy riddled vessel, despite the occasional propensity for me to think this.  

To me, and I think it is evident to my nearest and dearest, it is imperative that this part of my life does not stop. My brain couldn’t take another loss. What I get from throwing myself into multiple dark rooms, not talking to strangers over x amount of day lasts way beyond the days I am doing it. I’d had two years of testing the theory.

No pressure then.

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In the months prior to the EJ Bones Film Festival launch date of 9 October, I had managed to get on a bus four maybe five times since Transplant Number 2 and not once had the trip been longer than 20 minutes.  I had probably been out of the flat or Mamma Jones’ house for at most, five hours at a time, and the majority of that was probably hospital related. If I did for some inexplicable reason find that I had exerted myself for more than say four hours, I would then need to spend the entire next day relaxing. I also required a good 10-12 hours sleep a day in order to function.

  
19 screenings over 11 days did not give me much leeway for any ‘Bad Days’ and I get by on being able to have a Bad Day. Although I did get carried away with my bookings, I had created a schedule that would use the least amount of energy. If I was seeing more than one film a day, they had to be back to back, so that I did not have to do the 100 minutes round trip into the West End more than once a day. Bar two nights, I ensured I was home by 20:00hrs so I did not not interrupt my drug and sleep routines. I had only booked myself aisle seats to allow my butt more space to wriggle. Any socialising outside of the festival was strictly prohibited. In essence, I had accounted for my every minute during the festival in advance of it. I even planned my meals. It made me extremely anti social. Beyond that, I had blanked out the week after it to recoup, which only added to my misanthropic behaviour. Those 11 days in the middle of October, were my days and I put my hands up and admit that I approached it all with only myself in mind, knowing that it would make me feel better. In fact, to me, it was medicinal. A theory backed up by more than one Medically  Trained  Person. 

To put my energy usage into some sort of perspective, a few days before I found myself struggling to contain my excitement on my sofa, I asked a Medically Trained Person if I should still be limiting myself to the 5-25 minutes of activity a day. I was told that if I could do more, I should do more (but not too much), but at that stage they do not expect people to be able to do  much more than 25 minutes.

I think I have hammered home the point that my plans were ambitious.  

Did I do it?

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Of course I did. 

  
I missed the last screening. So, my film festival finished on the 18th with 18 screening and. I do not consider this a failure. Firstly, I got a refund on the ticket I did not use (ever the bonus). Secondly, I had seen 18 screenings in 10 days and by the evening of of the penultimate day, I was nearly catatonic. Sometimes, pride should be taken in knowing when enough is enough. Given the fact that I could no longer follow a five minute conversation, I knew that a two hour long Chinese musical starting 15 minutes after my usual bedtime was out of the question. If I had gone, I would have only done so, so I could tell you that I had seen 19 screenings and not the 18. 18 was enough. 18 was the magic number that is going to carry me through the next however many, long and dark months of the Unknown.

It was so hard. I thoroughly enjoyed myself, but my will and my body well and truly battled it out. Housemate lived with a zombie for the duration. Some mornings I had to contend with vomit or a similar issue from another orifice. The experience not only highlighted the level of my fatigue othe limitations of my morning drug regime; it reminded me that I have ‘problems’ with my back. Believe it or not, I forget about my back. I suppose 100mg of slow release morphine a day can do that. The same can also be said for spending nearly three months predominantly on my back.  The bus journey and sitting in a cinema seat quickly brought me back to a face squinting reality. 

In getting the bus and being around the general public, I was also reminded that the outside world is a hard place to exist in. It’s not considered acceptable to lie down when you are out, for a start, there are no beds. One of the cinemas had a footstool and I thought I had walked into paradise. Body issues aside, I suddenly and frequently had to factor in that there are the people who are oblivious when it comes to my disability. Mind you, my disability is invisible, so I can only allow myself to be marginally bitter about this. Leicester Square at midnight on a Friday could only be described as a Danger Zone for somebody used to the quiet of their flat. Many days I struggled to get a seat on the bus. There were many days I struggled to walk to the bus. Then there was the one day, when I was sitting in my seat ready to see the latest Studio Ghibli, when a woman on her way to her seat told me that standing up to let her through would give me some much needed exercise. Needless to say, I took her life apart with a disapproving glare. I just told this story to my favourite Medically Trained People, and they responded ‘if only she knew’. Indeed.

In the days that has turned into weeks following the conclusion of the festival, I have been extremely tired and my brain has been in quite a muddle. I started this blog on the 10th October. I feel like all my energy has been frustratingly zapped from my body, but I know that this is just an illusion of my own making. Of course I am tired and I do think some of this is caused by me running before I could walk.  25 minutes, remember the advisory 25 minutes. I went from doing a little every other day to being out and engaged for at least five hours a day for just under a fortnight.  On one of those magical days, I was out for over 12 hours. For those 12 hours, I pretended I was normal. 

During a few moments of existential despair, I have  questioned if I took on too much, whether 18 was too much and whether instead of  giving me hope, it has set me, physically at least, back. A physical setback quickly becomes a mental one too. With the help of my occasional  friend Reason, I realised that I was being missing one crucial detail… I am now doing more, and the consequence of doing more, is feeling tired and being more aware of the very real need for my bed. 

The EJ Bones’ Film Festival could never set me back. It’s spurred me on. The giddiness I felt on my sofa was not met with an anticlimax.

I would not be capable of replicating those 11 days again today. I probably would not be able to replicate it again in a fortnight. The key point for me to remember is that I did it once. And, if I could do it once, less than 100 days after my allograft, what the hell am I going to be able to achieve in 18, 50 or 100 days from now? More importantly, how many am I going to be able to see next October? The answer isn’t endless, but I know it is bigger and that is something to cling on to.
I am glad I set myself such a busy challenge, which means I am even happier that I was able to do what I needed to do. My will won out. I won that battle. Now, I just need to find a new one.

EJB x

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For those of you who are interested, I saw the following:

1/ Grandma (USA)

2/ The Club (Chile)

3/ The Daughter (Austrailia) 

4/ The Measure of a Man (France)

5/ When Marnie Was There (Japan)

6/ Son of Saul (Hungary)

7/ Room (Canada/Ireland)

8/ 11 Minutes (Poland)

9/ The Assassin (Taiwan/China)

10/ Evolution (France)

11/ Chronic (USA)

12/ Carol (USA)

13/ Desirito (Mexico/USA)

14/ Cowboys (France)

15/ Dheephan (France)

16/ Anormalisa (USA)

17 & 18/ A selection of short films

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Bon Anniversaire

Today marks three years since Myeloma officially came into my life. It’s three years since that junior doctor cried as she sat at the foot of my bed whilst she broke the bad news to my family and me. Is it an anniversary worth celebrating? No. It is however a significant milestone in my life and one which marked for better and mostly worse, a permanent change in the life of Miss Emma Jane Jones. Put it another way, the 17 August 2012 was life changing. And it wasn’t only life changing for me.

Since that date, I have been given a whole set of new dates to remember, celebrate and dwell. My first transplant on the 17 July 2013 for example, but that failed, so it was not quite the rebirth I advocated at the time. Then there was my second auto on 1 April 2015 and then my Allo on 23 July 2015. Only time will tell if the latter dates are ones worthy of celebration or just dates of mild significance. Mind you, the date my DNA changed will always be fairly significant won’t it?

For me though, this anniversary is the Big One. It’s the one that started everything off and although I wasn’t given the formal diagnosis until three days later, the 17 August will always be the day I got myeloma. The day I got myeloma. A ridiculous notion really, because my vertebrae did not fracture on that date, and the paraprotein did not suddenly appear in my blood on the 17 August three years ago. It is the date I knew why these things were changing in my body. It is much like my birthday, except with far more adolescent longing. On this date, I can feel melancholy and I can feel slightly sorry for myself than usual. I can, if that way inclined, try and recall the best and the worst of my three years, the highs and lows of each of 1095 days, I have fought through. And it is a fight, people may be trying to soften the vocabulary, but for me, I see this as a fight, a really, really big one.

Of course, you can see and feel the date differently, which I occasionally do. For as sad as my diagnosis was and as much as I do not want to have myeloma, the 17 August is also the anniversary of me growing up. My Myeloma has forced me to do many things I have not wished to do and experience,  but it also forced me to become an adult. Not the adult I once envisaged with a mortgage, children and a shed; the sort I am jealous of now. I am an adult who is forced to sponge of the State and her parents, but I became an adult nevertheless. I look at my contemporaries and sometimes I think to myself, ‘how would you have managed it?’ It’s a question without an answer, and it is a question I would not wish upon anybody ever having to find the answer to. I do not like myself for thinking it, but even when I think about that question in relation to me, I question how I have managed it all, and I am proud of myself. Even at the moment, when I seem to question daily my strength to continue with my allo treatment, I am proud of myself for coping. I think us myeloma sufferers deserve far more kudos for merely coping. I bet you any amount of money, because I do not have any money to make any sort of meaningful bet, that three years ago, I would have thrown anybody out of my cubicle if they dared to say that the 17 August would be a date that I would eventually be proud of. 

Even though my pride only accounts for some of my feeling towards this day. My diagnosis was the making of me. 

It was indeed a Big Day. 

I could do what I have done in previous years and list all the treatment I have endured in such a short amount of time. I could go through the physical side effects I have experienced many times over and have been forced to become accustomed to. I could even talk about how long I statistically have left in this world,  but I will not be doing any of that today.  This year feels different to me. Maybe it is because I am no longer at UCH and things seem temporary at St Bart’s. Though, really My Myeloma feels more than just the facts and the figures. Since my last anniversary, I feel like so much has changed; I do not know if it is a tangible change or just a non-drug related feeling in my gut.

Perhaps, prior to this last year, when I embarked on a nine month treatment programme followed by two SCT, I believed nothing had really permanently changed. I mean, I knew things had changed, but there was a part of me that still believed that my life could at some point at an unknown time and date, just slot back until place. I know that will not happen now. My 13 months of near constant treatment shown me that.

Until this last year, I also believed that I had a well established Support Network in place. I believed that all the perceived letting down I had experienced in that first year, was the only letting down I was going to experience in My Myeloma journey. My relapse last June corrected that misunderstanding. I feel far more let down post relapse than during any other time during my illness. Make a leaflet about that Myeloma UK, some people, those without myeloma, just cannot handle the fact that myeloma is a cancer that is chronic. That it goes on forever.

It is a strange thing to say, when I feel so well supported and loved now, but I have had to grieve the fact that some people got bored of my cancer and thus they got bored of me. It felt like they had tasted and enjoyed the 11 months of freedom remission had given me, and thought that taking it all on again with another relapse was too difficult a task to take. My stock went down. There were some people who made promises of support and friendship, not always actual promises you understand, but their presence alone throughout the early days of my illness, made me naΓ―ve enough to believe there was  something special and enduring in place. A promise of friendship. All I would say of this to anybody else in the same position as me, is, be warned of the glory seeker. When I am stuck in no man’s land, where there is no guaranteed end in sight, and the cancer keeps coming back along with my unpredictable fatigue, and those around me are moving on because they can, people and their promises can disappear. I have seen many of those promises, accompanied by those friendships end up on the proverbial scrap heap. 

It’s made for a difficult year and one where I have had to learn to stand on my own two feet. Fortunately, there is a flip side to this and if my relapse had taught me anything, it was who I could trust to stand side by side with me, as my treatment and their lives continue to develop. It does not always have to be either or, even though I am still prone to bouts of paranoia on this subject. Let’s not kid ourselves, I’m only physically well rounded. 

My relapse showed me that early on in my treatment, I made mistakes. I criticised my friends’ behaviour, in some cases I did so publicly and I regret that now. They were struggling like I was and they showed their struggle differently to how how presented mine. In the last few months, I have seen so much evidence of the support I have during my transplants, that I feel confident that even on my lowest days, I’ll have at least one person willing to pull me through the darkness. We just need to work on how I let people know. 

As it currently all stands, I know that My Support Network is well founded and passionate. It is mine, it is invaluable and I know that it is built on trust, even though I do not get to see its members as much as I would like to and I am pretty certain that is a feeling that works both ways. Rather strangely, or should that be tellingly, My Support Network is made up of people I have known for years either because they are related to me (obviously) or because they have had the good fortune of being my friend long before I knew what myeloma was. It has taken a while and the occasional misunderstanding, but I know who will be there when I need them. Some people will need to be asked for help and others won’t, but that is just the way things have always been and thus, it is the way things should be. I just wish there was more I could personally do to make my friendships equal again. Homemade cards only get me so far. 

Anyway, on the subject of my Support Network, I am making myself blush and as you are not all on anti sickness pills like me, I will put an end to the subject soon, I promise.  I could have just said what I am about to say five paragraphs ago;  My Support Network is irreplaceable. It may be irreplaceable, but crucially, my personal strength and journey through My Myeloma should not be defined and determined by it, and post relapse, when the droppings happened liked flies, I had to accept this the hard way and quickly.

My ability to cope with myeloma, is a much broader achievement than my Support Network. I personally, will always feel isolated by my illness and I have spent three years learning how to cope with this. I do not have all the answers, but I have more than I did last year, so who knows what I will be saying next year? And the year after that? And the year after that? 

Last night, as I was trying to drift off to sleep, I began to worry that with three years of near-constant treatment, there was a possibility  that soon, I might not have the strength to continue fighting should my current treatment fail. My current treatment, which I am nearly halfway though, is not exactly a walk in the park and trust me when I say, I have many a down day. I am fully aware that I will have more down days over the next x days. I will fail to get out of bed a few more times, find myself physically unrecognisable and cry over missing events with my  friends. I worried so much about my occasional thoughts of giving up, that I envisaged quite a different blog to the one you are currently reading. 

I haven’t only experienced treatment, relapse and drugs in my third year of myeloma. In the last year, somebody dear to me lost his fight against myeloma. He became dearer to me, selfishly, with my own diagnosis three years ago. He was somebody who I never saw being remotely negative about the bastard that is myeloma apart from rebranding Velcade, “Cillit Bang”.  I fear negativity is my default position the minute the going gets remotely tough. His eldest daughter also gave me an invaluable crash course in myeloma and continues to offer me considerable patience. Her Dad did not have a sibling donor and thus could not have an Allo SCT, instead  he had two auto SCTs and several other treatments such is the norm for current myeloma treatment on the NHS. He was given velcade and among many of the things, he suffered from steroid insomnia. He did not know it, but he was My Myeloma rock, and the only other person with myeloma I needed to know. My current treatment is the first treatment I have had that he did not have in some incarnation or another. I remind myself that I  feel poorly because I am lucky enough to have a sibling donor, and last week when I couldn’t get out of bed, I thought about him and his family, (and not because I had just watched The Man With The Golden Gun remembering a holiday we had) and I got out of bed. That’s all I really want to say about that. 

Three years after my diagnosis, in the middle of a transplant where I had to sign to say I was aware of all the risks that could happen during it, I am ever aware of my life and the chance of my death. I am also ever aware of the chance of my death being further away than the statistics that I will not talk about, and current literature would suggest. 

It’s been three years of changing and developing treatments and a changing and developing me. I don’t know how to end my acknowledgement of my anniversary, so I am just going to say goodbye and thank you for reading my blogs. I promise they will continue.

EJB x 

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Catch & Release

It has been seven whole days since I was told that I could go home and indeed, went home, leaving my week stay at St Bart’s but a distant memory. The latter part of that sentence is total bollocks by the way, the schedule of an allogeneic SCT, even if it is just a mini one like mine, makes it next to impossible to pretend that the hospital is just a misty water coloured memory in the corner of my mind. In the seven days I have been home, I have been to St Bart’s twice and in touch with them via phone or email on three other occasions. Essentially, I have been in touch with said hospital every working day since I left it. 

My bloods might be going in the right direction and the medically Trained People are making all the right noises, but did I leave there too soon? How the heck should I know? I spent all of Monday in hospital being tested for bugs and slugs in isolation, because they was a question over my current health.

If you were to speak to me or see me over the last week, you would probably conclude that I did leave too soon.  On Monday, a Medically Trained Person was asking me complex questions like “what was the date of your transplant?” and “what did you do before all of this?”, and I felt like I was taking my French oral GCSE without revision. All I could do was apologise that I could not speak normally. Essentially, you are looking at slow, occasionally drawling slur.

I have had two stem cell transplants before this, they were autos, meaning the cells were my own and the recovery was hard, especially after the first one. All so very hard. Upon discharge after both transplants, I got into a car and went straight back to Mamma Jones’ to be looked after until I felt like I could take a stab at doing it myself. My current treatment regime does not allow for that sort of leisure. It barely allows for sufficient rest.

Upon leaving last Wednesday, I was told that I needed to return on Friday or Saturday and then again on Monday for a Doctor’s appointment, leaving little time to make the four and a half hour round trip journey back to the Fens. And so, I decided that I would stay in my flat, with Housemate to help me until after the appointment on the Monday. There are many things one could say about this decision, but for today at least, as I continue to struggle to find my words, let’s just say it was decision most ‘foolish’. 

I am incapable of looking after myself. I imagine that is a fairly difficult statement for any 32 year old to say, accept I am 31 (the proofread) so I will say it again because I know it is hard for me to say; I am incapable of looking after myself. I am also incapable of planning anything, following a plot of any kind, having a prolonged sleep without experiencing a nightmare and not missing my friends.

I knew these facts last Friday, when with my bags still packed from the hospital sitting in my hallway , I phoned Manma Jones crying because my hair had started to fall out and I needed an hour’s lie down post shower, pre dressing in order to make myself presentable for blood tests. An hour after that I spoke to Big Sister and three hours after that she was at my front door ready to drive me back to the house of Mum Love. That night,  100 miles later, my mother needed to help me into my pyjamas. I then spent almost 23 hours of the next day sleeping. I did something quite similar yesterday, although yesterday, I only ate when food was presented to me at 18:10hrs. The previous day, after nine hours in the hospital, I realised that I had forgotten to eat anything at all. 

In hindsight, thinking that I could look after myself straight after receiving seven days of round the clock care, was just bonkers. Of course I have a Support Network in London led by Housemate and Bruce, but one of them is not anatomically capable of putting me in my pyjamas and the other one would be mentally scarred by the concept. Essentially, London assistance isn’t the same as the one I get with Mummy. The people of London have no reason to stand by me when I scream and shout and let it all out, and if I were being perfectly  honest, I will always try my hardest to avoid too many people seeing me at such a low ebb. A location I have been flirting considerably with this last week. 

I am trying not to overthink the situation because I know there is no turning back now and I also know how fortunate I am to be in this position in the first place. I just wonder that if I am finding this transition so difficult now, how the devil am I going to manage when the real thing gets started in a few weeks time? That’s rhetorical.

Some of you may be fortunate enough to have never been an inpatient in a hospital, so let me tell you that whilst in hospital one has little to no privacy even with the privilege of a private room. The NHS, the wonderful and flawed NHS, pays people to create and deliver a care plan, cook and carry  three questionable meals a day, waters you, takes your blood, check your pulse, breathing and blood pressure, prescribe and deliver the correct drugs at the right time and ensures said drugs are swallowed, they change your bedding and clean your room daily and these are just the people you see. Those tubes of bloods and tubs of my urine had to go somewhere, to somebody to check and the results put on to a computer, even if I wish these tests were done with greater haste. My point is, when one is an inpatient, all they have to do is try not to get too irritated by the lack of privacy. Everything else, even if it is not done to a quality one is quite used to, is done for you. One Sunday, for example, the threshold to my room was crossed 47 times in a 24 hour period; 45 times by Medically Employed People and twice by members of my Suppork Network. I do not know for what reason I documented this, but I believe it validates my next point.

  
The minute I walked out of the East Wing last Wednesday afternoon, all the responsibility for doing all of those listed above bar the things done by those unseen technicians handling my bodily fluids,  fell back on to me. It fell on to a me who continues to be nowhere near capable of doing such things alone. I can barely remember to drink, let alone to prepare the food I do not have the energy to eat, and remember to take the 20 odd pills I am prescribed each day at the correct intervals. And then there is cleaning, I attempted to lint roll my pillows today to remove evidence of my shedding hair and Inhad to do it in four separate sessions.

I went into my treatment with my eyes wide open. I knew it was going to be difficult, but I did not think that I would be doubting my ability to see it through so early on. A friend said to me earlier that I had rhino skin, which I sincerely hope is true for no other reason than all this treatment is actually going to make my skin thinner. Not just metaphorically thinner, but old-lady-be-careful-with-the-plaster-thinner. 

I think I just need a few weeks in bed to rebuild, but that is not afforded to me. 

My transfer to St Bart’s seems to symbolise much more than a change in venue for my treatment; everything seems different and all of it seems out of my control. Even though I may allow myself the occasional daydream that this time next year ‘I could be normal’, I am also a realist. I know that what is still to come is going to be so blooming difficult and I’m struggling to see where I am going to find the strength from to achieve my goals. My treatment feels relentless. This is relentless.

Prior to my discharge last Wednesday, I was asked to read an 79 page leaflet from Anthony Nolan called ‘The Seven Steps: The Next Steps’. I knew the contents of it, but I do not know if on the day I was getting to go home after spending a week in a drug fuelled neutropenic haze, I needed to read “it is important to remember that although you are being sent home from hospital, and an important phase of the transplant process is complete, it will be many months before you are fully recovered”. Define ‘many’.

The treatment is intense and I have not had find time to catch my breath. Reading that leaflet seemed to have cast a spell over my whole week. I do not normally feel so negative. That leaflet basically said, don’t relax yet, for the worst is yet to come. 

EJB x 

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Thrushed Out

It breakfast time. A Sunday morning breakfast time no less. I knew this long before somebody physically walked in to my room to to let me know it is breakfast time at all, because of the din they make outside whilst dishing up and not because I have the body clock of somebody permanently located in Beirut and found myself naturally hungry.

Anticipating many people getting round to seeing this later in the day, maybe after they have enjoyed their own Sunday brunches (in my head midday is a far more acceptable time for the first meal on a Sunday than 08:15hrs), can I recommend that you do not view it with or just before food? Consider this a health warning. I do not have the money to be sued. For, on this Sunday morning, I am writing to you about thrush. My very own oral thrush to be precise.

The possibility of something going wrong with one’s gob post chemotherapy is pretty high. So high in fact, there is a reference to it in an episode of Sex and the City and we all know how revered that show once was and therefore it is a fact most accurate, no? None of my three chemotherapies for Transplant Number 2 required ice lollies, but as with all other post IV chemotherapy I have had, as a precaution, I was given mouthwash to use. Crucially and this was my downfall, bar the the First Transplant the Actual First, when I did get some dryness and soreness, giving me the slimiest voice for the radio; I have never experienced the mouth ulcers I understand one can get from their chemotherapy. These mouth ulcers, I understand, are not the cancer equivalent of an unwanted spot by the why, in some cases they can compare with hair loss and are often treated by the morphine. I still find this difficult to be true but it is.

And still, despite knowing what could happen, I became complacent. When I was given the first mouth wash on Day -6, which required mixing two separate salty ointments in a glass,  swooshing the combined fluid around my mouth for 60 seconds and then discard. For four times a day.  I do not know if I suffered some sort of trauma during my childhood, but there is no way I can gurgle anything for more than half a minute in my mouth. When I attempt to do so, my  cheeks feel like they are going to explode and I almost always become so close to gagging that gagging is the reason for me spitting. 

My name is Emma Jane Jones and I am bad at mouthwash. 

Despite my complacency, I thought to myself, make a compromise, do two swooshes a day instead of four. I had enough on my plate. And when I was sick, would that mean I would have to endure it again? I am not sure how many I actually did take but I know there are currently a few boxes of the stuff on my windowsill at home and I have been  showing what as a child I called a ‘Geographical Tongue’ since last Tuesday. Geographical because the fungus grows like a map. God, I used to love showing it off. 

On my transfer from the day ward on Wednesday, it took well over 24 hours to get hold of a mouth wash again, but this time,  I was no longer on salt water. I was on Diffram. Nothing tastes worst than Diffram. Diffram ruins whatever you eat for the rest of your life. I tried to get then to take it back, to revert to the salt water, but I was told it was too late. My mouth had gone too far. Not only am I on the luminous green Diffram four times a day, but I also gave to take four doses of a mouth drop that taste like something you would likely find at the bottom of a certain sort of elderly lady’s handbag. 

It’s all my own doing, however, I know this and I cannot complain.. At the moment it feels like there is a furry film covering my entire mouth, unless I use the Diffram straight after brushing my teeth in which case, it feels like I have salt and wounds and they are becoming one in my mouth. My mouth is surrounded by some dry flaky skin that used to be my lips.

Like I said, I’m not complaining. I should have used all the mouthwash. If I had used it all and result was  the same, I’d be less angry because at least I would know I had done everything I was supposed to. One cannot rewind the clock and if I could, I definitely would not rewind it for this, so I am letting the eight year old me exhibit for a little bit and ask innocently, would you kiss a mouth like this?  

     

A resounding ‘No’? Okay then.

EJB x

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Rallying

Yesterday marked the end of five days of pre transplant conditioning. That would be, five whole days of travelling to and from St Bart’s for chemotherapy. Since the fist clenching, swear word swallowing experience of Day One’ (Day-6), I have endeavoured to be on my best behaviour when on the ward, experiencing the medical equivalent of seeing Wagner’s longest work without subtitles with an innate hatred of opera. 

I concluded that if I cannot always  service with a smile, I should be the one delivering said smile. It is something that is much easily willed than done, especially as the chemotherapy is having a negative, cumulative impact on every aspect of my body. My brain, my muscles, my bowel and my bladder feels like they have been assaulted by a BB gun and multiple sacks of potatoes. Thus, finding the energy to smile, let alone speak, does not come as easily to me as it usually, all so naturally does.

I have been attempting to rally myself into a state of positivity, but for me, this last five days at least, it is not something I have been able to do all on my lonesome. I have needed assistance. Poor Mamma Jones has been on the other end of the phone wishing she was in London. I even admitted to my friends that I was in need of assistance. Assistance being in the form company to make the hours in the clinic more bearable. Assistance to remind me that this is only a temporary measure, that won’t go on forever. Special kudos has to go out to Housemate who fought through what I can only imagine was a horrific hangover on Saturday to be at the hospital for 9am, returning home at 5pm. Yesterday, he even did my dishes, which is unheard of. 

In all honesty, this cannot be done alone. Yesterday, I forgot to brush my teeth, which I am sure was a pleasure for the Medically Trained People who had to get remotely close to my face. Even with a support network, the treatment is isolating.  If I feel like this now, who the heck knows how I will feel in a few months time?

In terms of the immediate side effects,   the hiccups have been plaguing me since yesterday, and when one looks like this post chemo, imagine what I look like mid multiple jerk:

 
Today, I have a ‘day off’, but this still involves heading into the hospital for blood tests. Big Sister also arrives in the Big Smoke for her part of the process today, so it seems only fair that I meet her to express some of the inexpressable gratifitude. 

Prior to last Thursday, I was told that I would find the conditioning relatively easy in comparison to my previous treatments. I wouldn’t go out and out and call this a white lie, I just think it’s difficult to be comparative to my past experiences when my current experience is so foul.  I might have fouled myself twice in 2013, but that is no consolation when I cannot take my morning medication without vomiting or distinguish whether ‘consolation’ is the correct word to use here over ‘consolidation’. 

We all know how much I love to talk about my toilet issues, so imagine the complex situation I found myself in on Monday night, four days without passing a number 2 whilst experiencing a cystitis-like pain from the cyclophosphamide. Every effort to unleash the stool, angered the other thing. It was a pain that could only be muted by taking two diazepam to permit a long sleep. It was a temporary reprieve, for it was still an issue present upon waking, but, hey, at least I got some sleep. Last night on the other hand, my sleep was interrupted five times to pass water because of the cyclophosphamide. 

The last five days have been relentless. With an auto, it’s one day of treatment than the transplant. The horrible side effects hit you later. I will probably be thankful when what experienced in 2013 doesn’t hit me, but right now, I just really, really want a week in my bed to recover. I know I am a good few weeks away from this luxury. 

So, in the meantime, I just have to rally. Rally and remember the key words that ‘This Soon Time Pass’.

  
EJB x

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Allo Allo!

Hello there, before I get things going I think we should all stop and appreciate the pun that forms the title of this blog. I am saying ‘hello’ because I have been absent from my blog of late and I am saying ‘Allo’ because I am writing to tell you all about the allogenic transplant I am about to have. Get it? If you were not a fan of a 1980s sitcom, maybe you will not have understood it immediately, but as I have now explained it to you, a pause for you to guffaw is warranted. 

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Right then, here it goes. 

Tomorrow, two years minus one day after my first stem cell transplant and 1063 days after I was diagnosed with the glory that is Multiple Myeloma, I will start treatment for my donor transplant. One could argue that I started treatment last July for this transplant, or, that all the other treatments I have had until this point have led to this transplant, but in the interest of not over exaggerating the sitution, tomorrow the SCT treatment really starts a proper.

It has taken an age to get here, and yet, once again, it all feels like it is coming at me too thick and too fast. I have spent the last few weeks wishing I had more time to enjoy myself post April’s auto, wishing I did not have to waste my limited time and energy sorting negative things out like money and my gas bill. I also feel under prepared in almost every sense possible. The impatient part of me however, which I should add, is My Ruler, just wants to get it out of the way. I have heard all the things that could happen and could go wrong, that I  just want to see what is going to happen and what is going to go wrong.  I want to be able to tell somebody if I’ll be free in a month’s time. I would really like to know how much energy I will have in October for the London Film Festival. I want to see if I really have wasted my last few weeks of freedom fretting over my future instead of seeing my friends and visiting my nearest multiplex. I want to see if I am strong and if I will be lucky enough to to experience weight loss. Most of all, I want to see if the transplant is going to work.

I really want it to work.

I will not know the answer to any of these questions until the treatment starts. It’s not only me who does not know, the Medically Trained People don’t know either. 

Last week, I was informed on two occasions that I am currently in remission. I didn’t believe it. On the second occasion, I was told that I was in complete remission and I was the healthiest I have been since all this started. It made the dire biopsy I had the previous week and discovering that I did not secure the lid on my 24 hour urine sample all worth it. It was news that once upon a time, would face me screaming from the roof tops. For now, it is news that bodes well going forward, only because I am exactly where the seven cycles of treatment and autograft intended me to be. It is exactly where I wanted to be. 

At the very least, it proves that my body is ready to fight the next fight, even if my mind is lagging behind. 

Some people may question the point of Transplant Number 2 when I have already achieved remission. If the last 1062 days have taught me anything, My Myeloma is a stubborn little bugger and any remission I have without the transplant will not last long. I remember June 2014 well. It’s a fact of my life. No transplant, no chance of freedom.

I’m backed into a corner with my treatment. My only true option is the transplant and I know this. Despite this, a question that has been plaguing me over the last few weeks, is that even if I do manage to get a long remission with Transplant Number 2, has the damage already been done? Myeloma came along and dropped a massive bomb into my life and there are times when I feel like I am frantically grabbing at the remaining pieces and failing to retrieve them. What sort of life will I awake to in 5-6 months time? An uncertain one. I have not been able to fully celebrate my current medical position because I have bogged myself down, with sleepless nights with these questions about my future. People tell me to focus on my health and worry about the later, well, later. That is easier said than done, especially when it is me who is staring into an abyss. Sure, my health is the most important thing, but what is health without the means to have a life? 

I know that I’ll think about the above more than once as I go forward, I may even take it out on others.  I also know that tomorrow when I wake up, my job is going to be getting through the transplant. My job is going to be getting myself out of bed everyday to get to the hospital for treatment. My job is going to be looking after my body, monitoring it and doing everything I can to ensure Big Sister’s cells do what we all want them to do.

I first heard of this procedure on 20 August 2012. At the time, I was told that there was a high chance of dying from it, there was a small chance that it would cure me and it was a rare procedure to undertake. I disregarded it. It scared me, it still does. I have had many a conversation about it since and all I know now is that I am ready to take the risk. I would be ready even if the risks were as high as first told. The prospect of being able to have a few years (conservative estimate) without treatment makes my mouth water. I’m blowing bubbles with my metaphorical saliva, I’m that ready for it. 

I have to face it, my life is not what it once was, but that is a fact that will not change by not having the transplant. In all probability, my life would be worse. Like I said, that damage has been done. Taking a risk with Transplant Number 2, the cost of doing, knowing how physically and mentally difficult it is going to be for me and those around me, has to be worth it. It has to be worth it. 

I’m in this for the long haul. 

So, tomorrow morning, I will go to St Bart’s where they will put a tube in my arm that will stay for much longer than I would like. I will have the first of five doses of chemotherapy and one week from today, I will have a bone marrow transplant. 

It’s the end of this blog, but, what it is the beginning of, time will only tell.

EJB x

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Training

My requirements on Monday were not restricted to signing my life away. Some people work out before a marathon, my pre marathon training is something else all together. In order for Transplant Number 2 to go ahead, I had to have a collection of tests done, the purpose of which, I think, was really for me to get used to the grounds of St Bartholomew’s Hospital and not for the Medically Trained People to see if my heart, lungs and kidneys are tickety-boo. Okay, maybe checking that my body is up to the challenge of an allogeneic transplant had a lot to do with it, but the morning meant five reception areas and their accompanying waiting areas, four medical technicians, one nursing assistant, one doctor, a room of Clinical Nurse Specialists and one trip to the loo. Essentially, I went into a lot of rooms. For me, it significant energy usage and exploration. I have somewhat expertly denoted this on the map below, each dot represents an area requiring my attention. It does not include the lift journey that came to a sudden halt inducing panic among everybody in it that the day out to the hospital had taken a sinister turn.

  Medically, I was required to have an echo, an ECG, a plethora of blood tests, a urine test and something called a spirometry test, which included something called a gas transfer. Sounds exciting right? Just a walk in a maze.

The blood tests, all eight vials of the stuff was straight forward. It’s as familiar to me as cleaning behind my ears. Part of me would like to have had the chance to have caught a Sexually Transmitted Disease since my last transplant, but alas, the bald head, lack of socialising and general lack of any resemblance of physical attraction put paid to that, and still, the hospital was still required to check my blood was ‘clean’ as it were. the hospital tested my paraprotein post transplant during my last transplant, and thus, I doubt I have anything to worry about with these set of tests. My paraprotein was less than five by the way, which the doctor said was fine. I should add that when I say I do not worry about these results, what I mean is that I worry about them the least. My superstition has gone absolutely nowhere.

The blood tests, which were the third test I had done on that windy day were immediately followed by me urinating into a cup and then me leaving said cup on a shelf in a toilet. Again, I am used to peeing, so this was no great shakes. 

Before I gave away my bodily fluids, two Medically Trained People looked at my heart. As the hospital is in a state of change, the tests were not done in the same building. The echo took place in a building that resembled the set of 28 Days Later (Big Sister is there as I type and described this building as a “dump”), whilst the ECG on the other end of the refurbishment scale occurred in a room with newly painted walls and a chatty technician. In defence of the technician doing the echo, it is probably difficult to be chatty when he was required to lift up my left breast like he was opening a cat flap. Apart from that specific indignity, I could have fallen asleep whilst he pushed the ultrasound into my chest and throat. I did arrive at the hospital at 09:00hrs after all, so by 11:00hrs, I I was waning. The sleepiness was not due to me likening an echo to a massage. To be doubly clear, I did not find a stranger touching my skin relaxing. I have had an echo before, as well as an ECG, so Monday’s tests were nothing out of the ordinary.  I am surprised I have managed to write a paragraph about them.

I do find it strange that the tests Bart’s require differ from those I had to do pre Transplant Number 1.  It’s easy to assume that two hospitals in the NHS, two miles apart would approach a transplant in the same way. You would be wrong. In March, I had neither test for my heart, instead I was placed in a machine and pretended I was a human toastie.  I also had a tiresome test on my kidneys, which in the City is replaced by a simple urine sample. One thing I have not required before is a the test on my lungs, also known as the spirometry test. In My Myeloma life, my lungs have never been tested, unless you count the peak flow meter for the return of my asthma.  
On the fourth floor of the King George V Wing, I went to a reception medically entitled ‘Lung Function’ and proceeded to go through a few doors via an irate woman lacking in manners, to a funny looking machine that required me to put a peg on my nose and blow. I blew a lot. The woman overseeing the test would have made a great motivational speaker. “Keep going, keep going, you’re doing great, keep going. Wonderful.” In fact, maybe I just need her around to help me out of bed everyday… Of all the tests I have ever had, this was probably the least intrusive. Like all the tests before it on Monday, it was nothing to write home about, except it is,  because I had never had to do it before. In my days of same old, same old, it was noteworthy. Plus, having a peg on my nose whilst placing my mouth about a large cylinder was a sight to be seen. A sight to be seen. And, it beats telling you what Bruce and I got up to on the sofa yesterday, because you can be damn sure it is exactly the same as what I did last week/month/year.

  
As with everything, I now get to wait for the results to be processed and reviewed and hope that everything really is tickety boo. Something big is afoot.

EJB x

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The Montage

If my life were a movie, this blog would be a five minutes montage sequence, deftly edited, to show the audience what I have been up to in the six weeks since my discharge from UCLH’s care.  It would need a soundtrack, all good montages do, take Rocky for instance. My soundtrack could be ‘Things Can Only Get Better’, but then, that would be an anthem that would need to last considerably longer than an edited version of my the last six weeks. For, we all know that things for me, are going to get worse before they have a hope of getting better. No song would really fit this period post Transplant Number 1, so just imagine the whistling theme from Disney’s Robin Hood, for no other reason than the fact it is a jolly ditty and a montage should really be inspirational rather an insipid display of melancholy.

The only barometer I have for how I should be feeling 56 days after a stem cell transplant is how I felt at this point after my last transplant. Of course, I had less Melphan this time round and for better or for worse, when I feel frustrated and fatigued, remembering a previous point when I felt worse, does not make me feel any better. My brain is firmly locked into the now, and knowing I have felt weaker is negligible when held against my current daily battle to get and stay out of bed.

In my head, the montage will begin with that wonderful  taxi ride back to my flat, there might even be a close up of my face showing the relief I felt at being able to go home. This opening shot would then be followed by several different scenes of me in various positions of rest on my bed at Mamma Jones’, her sofa, my bed in London Town and my own sofa. Montages tend to not have subtitles, but somehow, it would portray that as the weeks have progressed, I require less sleep and marginally less rest. The key word there, is marginally. Three weeks ago, I was introduced to my old foe, insomnia, so you would also need to see the nights I lie awake watching episodes of Inspector Morse worrying about my future. Fictional murder is really proving to be a great companion.

The first dialogue would probably be the conversation I had one week after my discharge with a Medically Trained Person, who told me that I would fight with fatigue everyday and then one day, approximately three months down the line, I will realise that I have more energy and I would suddenly find that I feel ‘normal’ again. Then, cut to a shot of my face looking like somebody just told me that a cat was a donkey, because I knew and know full well that that is not what is going to happen to me in three (now two) months time.  I’ll be swapping one trough for another, and that sort of medical autopilot made me want to punch a wall and it has done every time I have thought about it since. I think my acting skills are good enough to capture my ever present anger at getting better to allow myself to get worse…

Very neatly, this brings me to my enforced mantra or should I say, mantras. I’m getting better to get worse to get better. When that one fails, it’s all a means to an end. Then, when things get really bad, I just tell myself a very firm IT WILL GET BETTER, eventually. Or most commonly, my nearest and dearest have to tell me that. Most of the time I am just trying hard to trick myself into thinking that I am not bored of My Myeloma and my inability to do more than five hours of activity a day on a good day. 

In the immediate days of freedom, I spent ten days at Mamma Jones’ sleeping 12-16 hours a day. My sleep was intermixed with trips out for (small) lunches, Tescos, a Hobbit marathon with Haemo Dad and being waited on hand and foot. I am positive enough to acknowledge that I improved far quicker than I anticipated, and thus I was given permission by Mummy Dearest to return to London, where I have been attempting to look after myself ever since. Technically, I had a four day trial run, followed by a five day return to Mum love, due to what I would describe as ‘a bad few days’.

My bad few days included a few tears, a declaration that I had had enough of ‘all of this’, nausea and flu like symptoms. It was a feeling of doubt that passed temporarily, until the next thing happened to rile me up and then it passed again until the next thing happened to rile me up. And so it goes on.

Since my return to London, I have imposed a strict one plan a day rule. On the days I have been weak and desired to see members of My Support Network and planned more than one outside activity, I have been forced to cancel the second, because my body comes to a fast and bumpy stop. By outside activity, I include the odd trip to Sainsbury’s, three hospital visits, one barbeque, a few lunches and several trips to the Hackney Picturehouse. That would work very well into the montage. I really cannot get enough of the Hackney Picturehouse. My inside activity includes daily logic puzzles in an attempt to get my brain working faster than a baby turtle walks, cooking and half watching a lot of the telebox. The montage should, whilst I have the ability to remember, feature a few conversations I had where I was forced to stop mid sentence because I failed to remember the word I was trying to say. It’s not just losing a train of thought, it’s forgetting the actual words. I will always then apologise to the poor unfortunate soul speaking to me and curse the day my blood decided to crap all over my life. 

As the whistling theme fades, the next conversation you’ll hear, would be my trip to St Bart’s Hospital on 11 May. Following a very long wait, I was prepared once more for the uncertainty of the post allograft side effects and told that Transplant Number 2 is most likely to take place during the third week of July. I then got very sleepy. 

Back to various scenes of sitting, resting and attempting to distract myself from the negative impact of having multiple myeloma. 

Before I forget, there should also be the occasional clip of me struggling to eat and drink, then burping. Once I was able to eat, with less oral flatulence, I still for what seemed like several weeks, struggled to drink anything more than a sip without wanting to vomit it back up again or having to lie down to avoid vomiting it back up. It was at this point when I realised the power of hot water and lemon. Cut to my new glass cup and saucer with a few slices of lemon. Thankfully, things have progressed somewhat, so you’ll also have to see a few clips of me being gluttonous. A gluttony that can only exist with a daily does of strong anti sickness followed by a milder dose during the course of the day. Feeding myself comes at a cost, and in the last few weeks I have suffered from excessive hiccups post gulp, chew and swallow. You can imagine what an attractive dinner guest I have become.

Last Thursday, I had my first clinic appointment at UCLH since my transplant. After an unpresidented 150 minutes wait, I met with a Medically Trained Person to tell him how I was feeling, which after such a long wait, was braindead. Intentionally or unintentionally, managed to make  me feel very bad about my fatigue and and other side effects because, in his words, I had a lower dose transplant. In a montage I am not sure how I would get across my confusion as to whether he was saying that I was not trying hard enough to recover, that my symptoms were not real or that I was just plain lazy. How should I feel after a stem cell transplant that was preceded by nine months of chemotherapy treatment? Better, apparently. As for my need for anti sickness, I was told that I should no longer require Ondasetron. Fortunately for my sanity, I had attempted not to take said medication  the previous weekend and consequently spent most of the day looking rather green. 

Can a traditional montage have voiceover? Would that work to depict the insecurity I just described? No? Well, the next scene should do the trick and that would be Mamma Jones saying something along the lines of this specific Medically Trained Person not knowing me, accompanied by  something derogatory about his bedside manner.

And that is the end of it, at least for now. I have a sneaky suspicion that this fatigue riddled, nausea filled, cinephilia, meloncholic and courageous montage is going to go on for a little bit longer. And on. And on.

I might not be Rocky Balboa punching meat or Vivian Ward hitting Rodeo Drive, but it is my life and at least you are up to date.

EJB x 

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