Tag Archives: ciclosporin

Grafting

Four weeks ago, 31 days ago to be precise, I swallowed what *might* be my last ever Ciclosporin tablet. It was a noteworthy moment. It was more than that, it was a milestone that warranted me taking a badly lit photograph to commit said moment to my iCloud memory. 
 
It was a milestone that was a long time coming and one which came with something I have been yearning for. It came with a deadline. At least, it came with something that is as close to a deadline as I can get. If I learnt anything last year, definite deadlines and timescales rarely exist in the weird and wonderful world of myeloma. So, when the Medically Trained Person said that if I was going to get Graft Versus Host Disease, it would happen within six weeks of me coming off the medication, I finally had a date in my diary. Additionally, as you do need to get all the relevant information, I was told that within the six week window, I would be most likely to show symptoms at the two week mark. 

If the odds were ever in my favour, I had an unpredictable Christmas ahead of me. I had something that could almost be called a plan. I had my date. A date to look forward to and a date dread. At least, that is how I felt for the first fortnight.

Four words have been stuck in my head and followed my thoughts from the moment I knew I was going to have a donor transplant. Graft Versus Host Disease, known as GVHD to save my fingers. It might be the one medical term that is easy to pronounce, but the mechanics of it, the good and the evil of it, waiting for it, are anything but easy. 

From the moment my sister’s cells entered my body, not a day has gone by where I have not replayed conversations in my head telling me that a transplant will be (much) more successful if one gets GVHD. That a lasting remission is most likely to occur if one gets GVHD. That one only wants minor GVHD and not severe GVHD. GVHD can be worse than the cancer the transplant was intended to treat. GVHD can kill you. My post transplant world has been categorised by these thoughts and unbearable waiting to see which one applies to me the most. 

Another thing I have learnt in the most painstakingly slow way, is that the symptoms for GVHD are so broad that it has made it impossible for me to trust my body. Let’s face it, before my last transplant I already had reason enough to not trust my body. It has left no room for rational thinking. Everyday, multiple times a day, with each bowel movement, scratch, headache, bout of indigestion and shooting pain, I would wonder whether it had finally come. It did not. It was like failing my GCSEs on a daily basis. 

I woke up and continue to wake up everyday and my body does not feel right, and I do not know the cause of it. One could say I ‘do not feel right’ because I am recovering from a transplant, but I want to know more. I need to be reassured and I cannot do it myself because my body does not feel my own. Maybe I should ask Big Sister. I am 98% her now after all…This constant questioning of the unknown something, is one awful, inescapable disease. Half hypochondria, part anxiety with a sprinkle of depression and that’s before we get to the diagnostics of the physical ailment. It is a weight far beyond my actual sizeable girth and one that has often been too much to bear. Telling myself that the last 150+ days have been about recovery and not failure has been my full time job. I could not talk or write about it through fear of jinxing my snail-like progress. 

My long standing mental list of acceptable GVHD symptoms consists of oesophageal problems, diarrhoea and a rash. By December, despite developing a bottom sponsored by Andrex, the Medically Trained People told me that I had not developed anything from my list. As unpredictable and unformed as my stools had become, the fact I had not lost any weight, led the Medically Trained People to conclude it was not bad enough to warrant the GVHD label. During that conversation, the Medically Trained Person started to talk about the prospect of not getting GVHD. I left St Bart’s dejected. I felt unwell, just not the right sort of unwell.
If I thought that my days post transplant on Ciclosporin were difficult, the booming ticking clock that has been everyday post 15 December has been something all the more sinister. The first day free from the nightmare inducing horse pills, felt promising. My stomach was worse than usual and I could not stop scratching my neck. Both things soon subsided and realistically, were most likely a symptom of my nervous energy.

Over the next fortnight, I felt awful. Each 24 hours felt like double that. I was impatient. I repeated potential outcomes over and over and over again. I am embarrassed to admit that I occasionally gave in to the Bad Thoughts. The more I waited for something conclusive, for my pot to boil, the more I predicted failure. Worse than failure, a few times, I concluded that not getting GVHD which would shorten any remission, would be the easiest outcome for me. It would mean that I did not have to live with the unpredictability of waiting for a relapse and I would not have to deal with the uncertainty that awaits me when I attempt to rejoin my life. The bottom line was that at least that outcome would have a definite ending…
Then do you know what happened? 

Two weeks to the day after I took my last pill, I got a mouth ulcer. By the end of that day, I had two, and then by the following day, my mouth felt like sandpaper. It still feels like sandpaper. I hoped, and a quick Google search made me hope that little bit more that the cause of my pus filled mouth was the elusive GVHD… One week after that, I opened my mouth to a Medically Trained Person and do you know what she said? 

Read between the lines.

In that single moment I went on a metaphorical diet and I exhaled. I text members of my Support Network an update. I phoned Mamma Jones with the news, to which she responded nonchalantly, “I knew it”. Most tellingly, I left the hospital with my smile intact despite having to wait two and a half hours to rehydrate to allow for my bloods taken.

Despite allowing myself to bask in my relief for a day, I’m not buying any party poppers or downing champagne yet. The champagne would be wasted on my rotting mouth anyway. The six weeks are not up yet and although I am now on medication to treat my mild GVHD, my fears remain. No longer am I waiting to get GVHD, I am now hoping that it does not worsen. More hypochondria. My liver has not been functioning as well as it ought and although I was told not to ‘panic’ about my results, I challenge anybody in my position not to do just that. After all, I may have finally got what I wished for, but I still do not have a body I can trust. 

As I said at the start of this, there is a very fine line between good and evil. I have two more incredibly slow weeks of trying to stay on the right side of it. 

And then, what the hell is going to happen? 

Patience is not my virtue.
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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