Drooping

I have literally spent months, maybe even a year willing for something to change in my treatment, so that I had something interesting to blog about. I have a lot that keeps me awake at nights, but I still managed to squeeze in the worry that the monotony of daily cancer care would drive people away. Fast forward to my allograft and I have something new to say almost on the hour. Everything seems like it is new and I am in a state of flux. The problem? Nothing is keeping me awake at night. Very little is keeping me awake in the daytime. My treatment and this experience seems to be moving at such a rate that I do no have the time and I definitely do not have the energy to tell you about it all.

The headline is simple, I have had my transplant. Unlike the original plan, I had not one but two Day Zeros because Big Sister did not produce enough stem cells on the first day. I am far too tired to have body issues at present, which is for the best, because more than one Medically Trained Person told me that the reason for the two day transplant was my sister’s significantly smaller body size.

I just asked Mamma Jones to confirm how many cells I should have had over how many cells I actually had, and I felt like her answer lacked conviction. All you need to know is that I was only marginally short on Day Zero The First, and by close of play on Day Zero The Second, I had had more stem cells than originally intended. 

I now very much want to be a watched pot. I am being monitored so intently, that hopefully, my body will never have the chance to boil… I keep imagining that one day I will wake up and have enough energy to reply to my messages and blog about my experience to do date. If that day doesn’t come, let me tell you that this watching schedule is intense, with absolutely no room for respite. 

Going into this transplant, I was told that it was easy when compared to what I have already experienced over the last three years. I think the word ‘easy’, was a white lie. What I am doing, what I am having to do everyday without a day off is exhausting. Two years ago, I was stuck on a ward on UCH with green coming out every orifice; that was hard. Today, I do not have green coming out every orifice, but it is my 10th day of travelling into Bart’s for blood tests, forgoing rest and questioning the real purpose of showering. On Thursday, utterly dejected, I sat at the foot of Big Sister’s Harvest Bed and declared that I had never felt as ill as I did in that moment. 

If I could, I would sleep all day long. I just paused to see if I could have a few waking hours and truly the answer is no, I could sleep all day long. Yesterday, my neutrophils dropped to 0.6, so we are anticipating being told that I have to go into the hospital today. Exhaustion doesn’t cover what I feel. I am drained and I am fairly certain were it not for people putting food and drink in front of me, I would consume neither.

As for St Bart’s itself, I cannot be kind. There has been mistake after mistake, some I think are potentially serious. On average, I have been sitting in the patient bays for 5-8 hours a day and the fact that it is not only me feeling let down by the service is of some comfort. Individually, some of the Medically Trained People are lovely and I’d like to see Jeremy Hunt work the 10 day week plus on call one of my doctors just worked, but collectively, it’s disjointed. 

I keep reminding myself that I am a pragmatist and the only new age things I believe in are my Mindfulness Colouring In Books, for if I believed in more, I know I would get bogged down on how the ward has made me feel and to what detriment that has had to my overall treatment. It’s a blog in it’s own right, but when I questioned whether I would still be standing if St Bart’s had been my hospital from the start of my treatment, I think that really says something about my perception of their care. 

Now, Mamma Jones has to read this to see if it makes any sense and I am going to close my eyes to see if I can shake off this headache I have had for the last 48 hours. I am not allowed paracetamol anymore. Or suppositories, but that is another medical issue entirely. Bloody neutropenia.

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One thought on “Drooping

  1. Pam says:

    I have no ability to express to you how much I wish you did not have to go through all things mentioned in this post, the fatigue, endless waiting, all of it. I am wIshing for you to have better days and hours and thoroughly enjoy and appreciate your pragmatism.

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