Tag Archives: preparation

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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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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Wilting

I am wilting.

It is hot outside and I am wilting. It is just typical that there is a heat wave in the UK at a time when I am having a little procedure known as a transplant, must stay hydrated and must attempt to exercise a little. Think twice before you complain about the temperature, the news is full of it. Just remember, it could be worse…

The heat does not make any of this any easier, especially when I am wilting already, in spite of the heat

It was very clear to me yesterday afternoon, that I am not myself. I am not even the self who is a little bit sleepy. I feel beyond exhausted and spaced out. Utterly, utterly spaced out. I may as well be dribbling. I was convinced yesterday that I would be admitted to the hospital today, after a half mile round trip walk to Marks and Spencer left me looking like a pale, sweaty ghost bear. At 17:00hrs, I subsequently got into bed and there I remained until 08:00hrs this morning. Today, I have been to the clinic, then to an exhibition and now I am back on my bed because that is the only place I felt able to go.

Everywhere I look, I see a deterioration in my body. My body seems to be becoming more and more limp. My fatigue is ruling me, my belly hurts because I have not done a whatssit for three days, my hands are swollen, I cannot wear any jewellery because my skin is itchy, occasionally I feel like I am going to vomit making food unnecessary, my mouth tastes like I drank 14 pints of Kronenberg with a side helping of 20 cigarettes last night and I keep sweating. And yet, I saw a few Medically Trained People today and I am doing incredibly well.

Incredibly well, eh? What does that mean? It really makes the mind panic. Let’s face it, I feel pretty horrid right, so how much worse is it going to get? Am I being a wuss for worrying about my future and complaining about my present? Can I take it? Why did people now keep telling me that I am young? Does the nurse really think she’ll see me in Ambi Care on Monday, on Day 5? What needs to happen for me to go in? Not eating won’t. The need for sleep is to be expected apparently, and is my desire to stay out of the sun. Can people stop telling me that not everybody experiences all the side effects?

This is one strange twilight zone.

Wilting. I am most definitely wilting.

EJB x

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Training

I am working out. I am putting in the training. I am getting ready. And man, am I building up a sweat.

1, 2, 3, stretch, 1, 2, 3, work, rest, 1, 2, 3, answer phone, 1, 2, 3, sort entertainment, 1, 2, 3 socialise.

I have spent much of my last week trying to prepare myself, as much as I possibly can, for my transplant. The Medically Trained People are yet to confirm whether I am definitely going in to hospital in five days time, but I do not have the time to wait for them. If it turns out that I have another delay, than this planning would have been wasted. I am still battling my various commitments and constraints, and it would be a fair to say that I am concentrating much of my training on one specific area and neglecting the others. It’s a marathon. My current assessment of readiness says that I am not ready to go in, and I have become a victim of panic over the strangest and most insignificant things.

On the practical side of things, I think, I hope, I am getting there. On Monday and Tuesday I concentrated my efforts on working out my brain and my fingertips, and I can say that completing four events from this particular heptathlon was most satisfying, and it has allowed me to begin to think of the other things I need to do in the next five days. I fear however, that I will fall on the last hurdle on this one, and that niggling thought follows me. Well, it occasionally hammers me over the head. I have, however, like I said, began to train in other areas. I have started to fill my trusty cylinder and I have finally accepted that I am not going to be able to socialise with everybody I want to nor am I going to be able to complete my novella and redecorate my house. Oh well.

Who am I even in competition with? My Myeloma?

My brain is full of lists. Lists of things I need to do or have to be ready. I am sure the postman is loving me at the moment. Every time I tick something off my mental lists, I can breathe just that little bit more. Getting there, feeling like I am getting there, is making me feel better and it is making me feel more prepared. The hospital scheduling more tests on Friday was not in my strict training schedule, but I suppose they are my priority. Or my weak point.

My practical state of readiness will feed into my mental state of readiness, I suppose, but because I am so busy worrying about sending an email or five, buying new pyjamas, eating shellfish and bio yogurt and updating my iPod, I am not allowing myself to think about the procedure and how I feel about it. I don’t want to think about it.

Since I was diagnosed, bar the erm, occasional bout of misery, I have been stoic. I have got on with everything and I have remained positive and maintained a genuine smile. Really I have. People expect that, or I feel like they do, and I see anything else as weakness. I see my approach to this planned transplant as weak. I am disappointed in myself, after wanting my transplant for so long, to admit that I am scared by it. I am not throwing that word around lightly. I am scared. I can talk about my transplant on a practical level, but I cannot talk about how I feel about it, or explain how I feel about it, because I do not know how I feel about it, aside from knowing that I am scared. It does not help hearing other tales of it or knowing people from my pre-myeloma world who have gone through it. It is scary to me and it is out of my control. My training has to focus on the practical points, because if I tried to do anything else, I would always come back to that. On a basic level, I am scared because I cannot put a date on anything. I can lick my finger and put it in the air, but it does not get me any closer to knowing how long this will all take and what it will mean. I do not know how long I’ll be in hospital and I don’t know how long my recover will be. Following last week, I do not know if the transplant will bring about a hiatus to my treatment.

In everything I do, I sense some sort of finality about it. Not a forever finality, but I feel like I am coming to the end of something and I cannot quite put my finger on what that is. Is it an end to this chapter? Will my life change after my transplant? Or is it just an end to my hope that this chapter will reach a conclusion? Regardless of the answer, for nobody knows that yet, the clock is ticking and I everywhere I look and everywhere I go, I see a countdown. Tick, tock, tick, tock. I have six more sleeps in my bed. Tick, tock, tick, tock I will not be going back to the Fens. Tick, tock, tick, tock.</em And it goes on, and on, and on, but every time I finish something, or say bye, I feel that frog creep up into my throat and it takes most my energy to swallow it back down.

I am sure over the next five days, I will realise that the majority of this apprehension is poppycock and the brave little soldier, as I was once described will return. I am also sure, well, absolutely, positively certain that I will cry at some point. I do not think I will miraculously feel like I am ready come 16 July. I do not think that is possible. That said, I will do my absolute upmost to get there, just as I have always done…. Anyway, I figure if a British person can win Wimbledon, then I'm bound to be sort of ready, right?

EJB x

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Stem Cell Mobilisation

I am learning so much this week I simply cannot keep track of it all. Well, I can, because this shit is my job isn’t it?

Today I am going to tell you about the riveting world of stem cell mobilisation. The lovely chemotherapy on Tuesday was the start of this process and then on Wednesday, I started a ten day course of injections to prepare my body for next week’s harvest. I am going to keep saying next week’s harvest because there is no way it is going to be delayed. Hear that germs? No way.

As I sit typing this, I like to imagine that my stem cells are making the massive journey from my bones into my blood stream. They’ve always been desperate for a swim, they just didn’t know it. Well, some have clearly flown the safety of the nest previously, but I need loads. Millions to be not at all precise.

They tricked me with the injections. It’s actually two per night and not one. At least these are already made up and living in my fridge, and the syringes have tiny needles. The injections are to be taken in the evening, every 24 hours. I have selected a poking time of 20:00hrs. There is nothing like predictability, to keep one on their toes.

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Lots of drugs.

I have finally been able to get my hands on a sharps bin, but I had to ask. The yellow boxes are dead exciting, and prevents my bin men from wondering why the hell there are 27 needles in my rubbish bin. Oh and apparently it is some sort of health hazard. I’m being thoughtful. The hospital did forget to give me antiseptic wipes, I have seen enough people give me injections to know I need those, but I am resourceful and some have been sourced.

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In a few days time, I may apparently experience a whole new type of bone pain because of the injections. As this is a ‘possible’ side effect, I definitely think it will happen, so Mamma Jones’ is getting me some co-codamol so I can still party.

There have been a few, and by a few, I understand it is just a few cases of people rupturing their spleen following these injections. I am not imagining that this will happen. I do not want to be a medical marvel.

My fingers then are crossed. These bad boys have to work don’t they? If memory serves, there is either a one in ten or three in a hundred chance of them not working, but again, positivity will see me through.

As a friend kindly advised today, I’m just hanging in there.

EJB x

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