Monthly Archives: November 2015

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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