The Monologue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

EJB x

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6 thoughts on “The Monologue

  1. Lorna says:

    I have no idea what you are going through. I have never experienced anything so scary, I can only imagine. My husband has Myeloma and totally unrelated his kidneys have now failed. It isn’t anywhere near as scary as your transplant, but it makes me sad.

    You have every right to be angry, very, very angry.

  2. Tj13 says:

    One step at a time. You are strong and have done the auto before. Take hope from others on the Beacon who have done the allo like you are doing. You have a lot of people out in the world that you don’t even know pulling for you.

  3. You’re nearly there Emma! Thinking of you. Hope everything is going as well as possible in these days before blast off. You capture so incredibly well the surreal intensity of waiting for it. With my auto I nearly lost my mind at the very last bit – had my line fitted in the morning but room wasn’t free until 7pm, didn’t know what to do with myself… Countdown was over but not over! Ended up killing time in random bits of Wimbledon but had to move every half hour! Glad you’ve got the hotel set-up at UCLH, that looks amazing. Wishing you the best for it all – it’s not fun I know but it’s worth it. Let’s hope this one breezes by compared to the last one! Hx

  4. True enough…. that others are thinking, praying, intending for a good outcome for you. I am one of many who will be holding you in the hands of All That Is Good, trusting that the pain will be less, the healing faster, and we hear from you that your imagination (such a wonderful but probably too energetic one) vastly enhanced the reality of what the transplant was in all respects and that you are no longer feeling you are driving an off-road rig through dangerous land-mine territory. Many blessings go with you, Dear Emma, and much love. XO

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