Little White Lies

It is a well documented fact, that I do not live on a schedule of my making. My body demands my current schedule, but it is not the schedule I envisaged for myself a year ago. The Medically Trained People have more control over my long term planning than I do. I should probably add, that I make the most of it, most days I have little acts of defiance, but I can only do that because I live day to day, and not week to week, month to month. For the last four months, if anybody were to ask me what I was doing or if I wanted to do something post July, I would not be able to answer. I would not be able to answer, because I did not know. I did not know where I would be. I still don’t.

I do, however, from last Friday, have a slightly better idea. It will, unfortunately, remain an idea for a few more weeks, because myeloma is not that clear cut. Myeloma is an inconsiderate bitch.

Previously, last week if my short term memory is being kind, I voiced my concerns about the Medically Trained People moving the goalposts, changing the date of my transplant by pushing it back further than the proposed six to seven weeks. Pushing it back, because that is what my experience told me was likely to happen. On Friday, I discovered that the goalposts had indeed been moved. The provisional date for my SCT is not in the six to seven week timescale, it is in fact, in a five week timescale, meaning that in three weeks time, I will, correction, may be packing my bags, giving EMan a wash, and going to stay in a magical place called The Cotton Rooms, before I am reunited with T13’s Angels. I am told that my holiday will be between three and four weeks, before I then get to have a longer holiday in a little island known as Bed.

Since Friday, the majority of people I have spoken to have said that going in to hospital a week or two weeks earlier than I had started to prepare myself for on 6 June, is not a significant issue. The sooner the better they say. I agree with this too, of course, for I categorically do not want to be in hospital after 14 August. Turn that coin around however, and the thing that I have been waiting for for six months, now seems to be happening too soon. Too, too soon.

I do not know if I am ready. I want to let my hair down (metaphorically) before I spend an estimated three months recovering. I want to do fun things. I want the opportunity to fill up my good cylinder before the bad cylinder becomes my main service provider. I have not learnt how to use my sewing machine yet for goodness sake. There isn’t really time for that in the next three weeks. Let us not forget that I still have another ten days on VDT/VTD, so the opportunity to have some mad, crazy fun is limited because I am a sleepy bum, who likes her bum and her sleep. Being a sleepy bum has not stopped me from planning to have some mad, crazy fun, but I fear it may prevent the execution of it. It may sound trivial, but I feel like I need to replenish that good cylinder, for I do not know how I can get through the coming months without it and when I will next get the opportunity fill it. There is just no time to and this not only frustrates me, it scares me. I feel like I have so many conflicting priorities, that I will worry and concentrate on them so I feel guilt free and not really have the time to just, be. Then, before I know it, it’ll be the 17 July and I’ll be missing my SMART TV. Then before I know that, it’ll be a week later and I will be shitting in a public toilet.

It is a Catch 22. I want to plan. Not only do I want to plan by filling up my good cylinder, if that is indeed possible, I want to prepare myself for my transplant and whatever that is going to entail. I am going to be incredibly poorly, I am going to lose my eyebrows and I am going to feel isolated and lonely in an environment that is not my own. I did this ahead of my first transplant date in March and I felt ready and that made its cancellation taste so much more bitter. I do not want to feel the way I felt on my Bad Day ever again. Unfortunately, I will not know, and presumably, neither will the Medically Trained People, for certain, if I am having my SCT until a week before I am due to have it. A week, by the way, is a conservative estimate. The reason for this uncertainty, is because they need a bone marrow biopsy and that is not happening until 3 July and the results take a good week to come back. For some reason, this biopsy could mean that I do not get a transplant and presumably, that my life span has reduced some more, so, that is something to look forward to. By the time I find out for certain whether I am to leave my flat for a prolonged period of time, it’ll be less than a week before I go into hospital. It is a Catch 22. Prepare and risk being disappointed. Do not prepare and be unprepared. This conundrum has been going round and round my head since Friday and I am in a pickle. I am trying to carry on as ‘normal’, but in everything I do, I see a countdown. Tick tock. Tick tock.

In this interim period, my strategy is Carry On As Normal With Added Extras. The ‘added extras’ are enjoyable things I happen to find myself doing around my treatment and need of sleep. It is not ideal, because the truth is, I do not really have time for ‘added extras’. I barely have time to see people. I try to see people, but it usually ends up with me over booking myself by attempting to be out of my flat for more than ten hours, feel pressured by myself, and then feeling incredibly tired and incapable of sleep. Attempting not to dwell on my latter point, I may have booked a ticket to the theatre and an exhibition and I may have had a family day out with the Cottams on Saturday, I have also planned a bake-athon in my kitchen, but I am doing these things just because I can and not because I need to.

My short term memory also tells me that I told you that I can sell anything to myself. I am selling myself this lie. It’s two lies really, the first lie is me preparing for my transplant without actually preparing for my transplant, and the second lie is me convincing myself that three events in three weeks makes fun. I lie however, so that I can carry on for the next two and a half weeks, and then, I guess, I will jump whatever bridge I find myself on then. After all, I have managed to get this far.

EJB x

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4 thoughts on “Little White Lies

  1. effie says:

    you are not alone. i also have mm and am waiting for the my blood results to see if my stupid paraprotein levels have decreased. i am 40 years old, feel like i am 20 and have no signs whatsoever that i have this shit but my marrow and blood say otherwise !!!!

  2. Terri J says:

    It’s cliche girls but “One day at a time”. If you feel like it do something fun that day, if you don’t feel well sleep. They told us 3 weeks to a month in the hospital for my daughters transplant & she got out in 17 days. You are young Emma that may not seem like a good thing but it is in the transplant world. 17 days in hospital, 3 months of not being around to many people & then back to life.(with doctor visits in between). I’m not making light of the situation I’m just trying to show you that it does get better in this “life interrupted”.
    P.S. Sara’s hair fell out about 14 days into it & she actually decided to shave her head because it was coming out in clumps & very uneven. SHE DID NOT LOSE HER EYEBROWS

  3. Alex Bicknell says:

    Do a few things now, if you can find the energy. I suspect that when the time comes you are more than ready – long past ready really. SCT is daunting, but it is the doorway to feeling better. Get about 6 weeks beyond it, and you will begin to feel the improvement – I sincerely hope. So be brave. By the way, my eyebrows were about the only hair I didn’t lose.

  4. Let’s do an intention that 1) you keep your eyebrows, 2) you are sailing through the SCT as a happy surprise to all, and 3) the end results make it all worth it as you get better and better every day, for the highest and best good of all concerned, so be it and so it is! WHoooooo! (High-fives!)

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