Tag Archives: allogeneic

Training

My requirements on Monday were not restricted to signing my life away. Some people work out before a marathon, my pre marathon training is something else all together. In order for Transplant Number 2 to go ahead, I had to have a collection of tests done, the purpose of which, I think, was really for me to get used to the grounds of St Bartholomew’s Hospital and not for the Medically Trained People to see if my heart, lungs and kidneys are tickety-boo. Okay, maybe checking that my body is up to the challenge of an allogeneic transplant had a lot to do with it, but the morning meant five reception areas and their accompanying waiting areas, four medical technicians, one nursing assistant, one doctor, a room of Clinical Nurse Specialists and one trip to the loo. Essentially, I went into a lot of rooms. For me, it significant energy usage and exploration. I have somewhat expertly denoted this on the map below, each dot represents an area requiring my attention. It does not include the lift journey that came to a sudden halt inducing panic among everybody in it that the day out to the hospital had taken a sinister turn.

  Medically, I was required to have an echo, an ECG, a plethora of blood tests, a urine test and something called a spirometry test, which included something called a gas transfer. Sounds exciting right? Just a walk in a maze.

The blood tests, all eight vials of the stuff was straight forward. It’s as familiar to me as cleaning behind my ears. Part of me would like to have had the chance to have caught a Sexually Transmitted Disease since my last transplant, but alas, the bald head, lack of socialising and general lack of any resemblance of physical attraction put paid to that, and still, the hospital was still required to check my blood was ‘clean’ as it were. the hospital tested my paraprotein post transplant during my last transplant, and thus, I doubt I have anything to worry about with these set of tests. My paraprotein was less than five by the way, which the doctor said was fine. I should add that when I say I do not worry about these results, what I mean is that I worry about them the least. My superstition has gone absolutely nowhere.

The blood tests, which were the third test I had done on that windy day were immediately followed by me urinating into a cup and then me leaving said cup on a shelf in a toilet. Again, I am used to peeing, so this was no great shakes. 

Before I gave away my bodily fluids, two Medically Trained People looked at my heart. As the hospital is in a state of change, the tests were not done in the same building. The echo took place in a building that resembled the set of 28 Days Later (Big Sister is there as I type and described this building as a “dump”), whilst the ECG on the other end of the refurbishment scale occurred in a room with newly painted walls and a chatty technician. In defence of the technician doing the echo, it is probably difficult to be chatty when he was required to lift up my left breast like he was opening a cat flap. Apart from that specific indignity, I could have fallen asleep whilst he pushed the ultrasound into my chest and throat. I did arrive at the hospital at 09:00hrs after all, so by 11:00hrs, I I was waning. The sleepiness was not due to me likening an echo to a massage. To be doubly clear, I did not find a stranger touching my skin relaxing. I have had an echo before, as well as an ECG, so Monday’s tests were nothing out of the ordinary.  I am surprised I have managed to write a paragraph about them.

I do find it strange that the tests Bart’s require differ from those I had to do pre Transplant Number 1.  It’s easy to assume that two hospitals in the NHS, two miles apart would approach a transplant in the same way. You would be wrong. In March, I had neither test for my heart, instead I was placed in a machine and pretended I was a human toastie.  I also had a tiresome test on my kidneys, which in the City is replaced by a simple urine sample. One thing I have not required before is a the test on my lungs, also known as the spirometry test. In My Myeloma life, my lungs have never been tested, unless you count the peak flow meter for the return of my asthma.  
On the fourth floor of the King George V Wing, I went to a reception medically entitled ‘Lung Function’ and proceeded to go through a few doors via an irate woman lacking in manners, to a funny looking machine that required me to put a peg on my nose and blow. I blew a lot. The woman overseeing the test would have made a great motivational speaker. “Keep going, keep going, you’re doing great, keep going. Wonderful.” In fact, maybe I just need her around to help me out of bed everyday… Of all the tests I have ever had, this was probably the least intrusive. Like all the tests before it on Monday, it was nothing to write home about, except it is,  because I had never had to do it before. In my days of same old, same old, it was noteworthy. Plus, having a peg on my nose whilst placing my mouth about a large cylinder was a sight to be seen. A sight to be seen. And, it beats telling you what Bruce and I got up to on the sofa yesterday, because you can be damn sure it is exactly the same as what I did last week/month/year.

  
As with everything, I now get to wait for the results to be processed and reviewed and hope that everything really is tickety boo. Something big is afoot.

EJB x

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My Little Secret

As I emerge from yet another broken night’s sleep, I think it is high time I revealed a little secret in the hope that I can have a full night’s sleep tonight…

Dum. Dum. Dum.

In no way, whatsoever, am I coping with my transplant plans. You can exhale now. I do not feel ‘okay’, which if you did not know is my default, do not alarm people adjective for my health and my feelings. I find anything below the Okay Line, all rather embarrassing and not very English. I do not think I can hold my stiff upper lip anymore, and in admitting that, I suspect I am letting some people down.

I might me as big as one, but I am currently, not as strong as an ox.

If you are fortunate enough to be the handful of people I have felt well enough to talk to over the last week, I may have mentioned the subject and smiled. My voice may have even broken as I succeeded to hold back the weight of conflicting emotion. You may have left the conversation thinking that some of my fears had been listened to and that as a consequence I felt a better. I may have felt a little better, but then we have only really scraped surface. I do not know how to present the truth to people, to my Network.

The truth is, at this moment in time, as I am due to spend the next x weeks preparing for y months of illness and the unknown, all I can think is ‘can I do this?’ Then, when I am done considering that and everything than encompasses, I ask myself ‘is it going to be worth it?’ If I have allowed the brain to truly spiral into self pity, the latter question is accompanied by the sub question, ‘what are you even going to be left with?’

Reading my questions, I would like to think that your answers would be ‘yes, yes and a lot’. I keep telling myself that these should be my answers. There is something else in my head however, on repeat, with a persistent beat, saying ‘this is all too much, Emma‘. Too, too much.

On a practical level, I can discuss the x and y. By that, I can talk to somebody about how I have purchased new pyjamas, when I am going to shave my head, my concerns about where my PICC line is going to be in relation to the toilet door in my hospital rooms and whether it is possible to magically speed up my iPad so I can have meaningful entertainment in the hospitals. That’s the limit though, because everything else is a black hole of uncertainties of terrifying gargantuan proportions.*

In a much needed counselling session last week, in answer to my first question, I almost satisfied myself with the answer, ‘I’m just going to have to pull something really big out of my arse’. Even in the most emotional of circumstances, I still manage to find a way with words. My reasoning was that I have managed to hold myself together for over two years of near constant treatment, by flying, very slowly, by the seat of my pants.

My ability to create magic from my bottom, I believe will be greatly aided if I can use my x weeks productively, to see my Support Network, do things that I will not be able to enjoy for the rest of 2015 and complete my annual Oscar’s Challenge.

There is a problem with this plan in addition to my financial constraints, and it is a problem that is adding to my current woes. The problem is called fatigue. After 28 weeks of ongoing treatment, my body is coping less well with the thing they call energy. Not only that, but my new treatment regime, which involves the return of Cilit Bang and coordinated weekly doses of steroids, means that I have even less energy to do the things I would like to do. I have become most flaky in my social planning, for, I am finding there is just a lot of things I cannot do. On Saturday for example, I was out of my flat for a total of 5 hours, which included lunch, the cinema and a trip around Dalston. At the end of that, the only place I was going was to my bed to feel sorry for myself.

My head does not need the additional hurdle of fatigue at this stage. Last night, as I sat on my bed for 20 minutes working up the energy to put on my pyjamas, brush my teeth and give myself my G-CSF injection, I thought that the year of fatigue had already started. I am already struggling and it will go down before it goes up. It is an extremely scary thought.

Scarier still is what is to come when I head into my transplants. As I am one to blow my own trumpet, last week I summed it up well when I said that the best case scenario is that I am incredibly ill for a year. I might have even put that in my last blog, I cannot remember, in which case I said it a fortnight ago. I am going to stop, lie and watch whilst everybody around me continues to live. I obviously want them all to live, but that does make me feel behind. Immature. I try not to think about how much of my life has been put on pause with my treatment, but I would be naive to not realise how magnified I am going to find this reality when I am bed bound for such a long period of time.

Fingers crossed I will emerge well from my procedures, but that will come at a cost. I will have no money, I probably will not have a job and I will still be single and not so ready to mingle. I know myself well enough to realise at some (many) point(s) over the year I’ll be jealous and angry that others will be experiencing what I wanted for myself. I do not know how I will deal with this and I that is a concern. I am scared of driving people away. Mamma Jones recently described me during my first transplant as a ‘brat’. That was a revelation because I thought I was an angel.

When I ponder whether it’ll all be worth it in the end, my fear is that My Myeloma would have left me a shell of a human being with little relation to who I was up to 17 August 2012. I do not know what I will have to offer. This is a shocker, but myeloma has most certainly dented my self esteem. Even now, I am haunted by the words a friend said to me post my first transplant in October 2013. ‘Everybody is bored of your myeloma. You need to understand they need a break from it and thus you’.

Imagine that, huh? I know for a fact I am not going to be an easy person as things get going (seeing quote from Mamma Jones), and I fear that those kind words will become truer and truer as the year progresses. How far with loyalty get me? I have already seen some of this specific concern reflected in my relapse. I cannot do many a thing these days and thus less people feature in my life as a consequence of that. When I am high as a kite on morphine or after spending a third day without speaking to anybody but my mum, imagine how those thoughts will play. Actually, you do not have to imagine, I have imagined it for you and I am trying my hardest to find a way for me to not let it happen.

Of course, I have my fears about the worst case scenario too. I am still superstitious, trying to be brave and limit what can be perceived as complaint, so you’ll just have to read between the lines on what I do not want to happen.

I was surprised earlier in the week that somebody else was surprised when I told them that I have recently become reacquainted with the uncontrollable tears. They asked me why I was upset… I really hope the cat is out of the bag now.

And quiver.

Now, if people can make me feel loved without making me feel awkward or like you are taking pity on me, it would be much appreciated. Don’t worry, I can talk about things that are not about myeloma, in case you were on the cusp of getting bored. I think.

EJB x

* In case you were wondering, I am working on increasing my limits. I’m searching for some metaphorical tools. Do you know where I can find them?

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