Tag Archives: Bloods

Ignorance is Bliss

I have been so focused on fixing my back pain, a pain which occasionally spreads to my neck and legs, that I have rarely thought about my paraprotein level. In addition, my current treatment is rather difficult, and now, three quarters of the way through my third cycle, there are still so many other, more immediate things to concern myself over. I have one clinic appointment every four weeks lasting about 15 minutes where I have the opportunity to discuss everything that I have experienced in the four weeks previous, and so, by the time it comes for me to ask how my paraprotein is doing, it has slipped my mind.

My neutrophil count for example has twice been at 0.85. A quick google search revealed that this means I am suffering from moderate neutropenia. As a consequence, I am now on weekly G-CSF injections to boast my immune system, and on daily watch for any changes to my body. It is a figure that comes from a Full Blood Count, which takes the Blood Taking People in the Cancer Centre 15 minutes to process. The paraprotein test takes a few days to return and thus, and result I get will always be out of date, and will almost always require a phone call if I wanted to know what it was.

At the start of Cycle 2, cyclophosphamide was added to my treatment cycle, which is something else that took up time key discussion time in my appointment. I also sensed during that appointment that if another form of chemotherapy was being added to my treatment, then I could not have done that well in Cycle 1. Of course, having thought about this in many of my alone hours, at that point, the Medically Trained People would not have had my results from the first treatment cycle. It did not stop me from wondering and worrying however, and that wondering and worrying led me to one conclusion; ignorance is bliss.

Three weeks ago at the end of Cycle 2, I was told by maybe my second favourite Medically Trained Person that my paraprotein had indeed reduced. It was at this point that I realised that I did not even know what I started my treatment with. On the 23 June, when I was told I had relapsed, it was 20 and I figured then that it did not matter what the figure was thereafter, all that mattered was that My Myeloma was active once more. By the time I started my treatment a week later, it had risen to 26. Halfway through my second cycle, the level had reduced to 18. When I was told this, I openly admitted that I had not thought about asking what the magic number was, and in response I was asked whether this was because I was afraid of the answer. That is a big question.

I think I was afraid of the answer. Not seeking the answer was a position I reached by default. If it was intentional, I did so subconsciously. I have experienced the excitement of a reducing paraprotein level followed by the plateau two times before, and logically, my previous experience is always in the back of my mind when I think about my illness and my future. The Medically Trained Person was pleased by my results and said that I could soon be at a partial response. Every part of my being wants to get to a partial response soon, but I fear history repeating itself. I do not need that sort of negativity, so what I had actually done, inadvertently, is not consider it all. I get up everyday, I take my drugs three times a day and I stay in the flat when I need to stay in the flat in order to save my energy. I do not want to spend the next however many months, crossing my fingers reliving the feeling of getting my A Level results, worst still, the disappointment of my GCSE results.

I learnt from my previous treatments that living for that result at the end of each cycle, is not mentally healthy. It does not ease my mind. It does not send me to my happy place. All it does is make me worry and occasionally it makes me cry. I need to keep my head high and that too needs to be a priority in these darkish days of twilight. Of course, as much as I do not want to live for the numbers, I want the number to reduce as much as it needs to ten times more. The weight I put on this means that I cannot overthink it. What will be will be, right?

There is a difference between my current stance on following my paraprotein and negativity. I do not sit at home all day and all night long thinking that my treatment will fail, I just try not to think about it at all. Myeloma dominates my life at the moment, but I do not want to live for it. When I think about the numbers, no matter what it is, I will always want it to be lower and that does little for me and little for those around me who have to manage my disappointment.

At this point, all I need to know is that my treatment is working, and the sacrifices I am making, the monotony of each day is worth it because I am actually getting somewhere. I will not ask for anymore because I know that it is not realistic for me to ask for it, despite the people around me wishing to know the scores on the doors so they can measure my progress.

The initial excitement I had when I found out that my paraprotein had reduced soon past, when I realised the dangerous, all so familiar path it would take me down. I know it is dangerous because I know that the Medically Trained a People know what my results were at the end of the second cycle, and once again, I am afraid to find out what it is. I need to carry on thinking that all of this is worth it, nothing can contradict that, even the truth.

EJB x

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A Bad Vein Day

Long term cancer patients get ‘bad veins’. Their veins hide, and need gentle coaxing, heat and occasionally, a good old spanking. It is not a new phenomena, nor is it one I have not encountered before and thus not spoken about before. It is, however, one that I have not had to think about for a long time.

My current world does not require much thought of veins, and I assume that this makes me normal because I did an imaginary survey and most people do not give much thought to their veins either, unless one is being vain (geddit?) and fearsome of the their bulging hand tunnels. I do not not have bulging hand tunnels.

Most of my time now, the Medically Trained People want to take stuff out rather than put stuff in, which is much, much easier and is merely a short, sharp scratch and a permanent bruise on my left arm. Yesterday, stuff needed to go in, bone juice to be precise, and my veins, without a doubt, did not want it. It took three, rather painful attempts to get the cannula in, which surprised me because six weeks ago, the needle went in with the greatest of ease. That’s right, cannulas still involve a needle and a tube.

For me, it was a reminder that this is part of my life now; needles, bloods, delays and pain. It was also a rather timely reminder that my current treatment is a vast improvement on my previous treatments, when a cannula was not a rare occurrence. Way back when, I was always sporting bruises on my arms, always worried that there would not be a suitable vein and I would experience pain, and I would always get ill from what had gone in. That does not happen anymore.

So, yesterday, for a brief moment, I allowed myself go rejoice in my situation, and all because this happened:

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And yes, I did keep the cotton wool on for my journey home; it ensured I was given a seat on the 73 bus.

EJB x

P.S. In six weeks time, I will definitely seek out my favourite nursing assistant for this task. She has the magic touch, but I have never said it to her face so as not to induce undue pressure.

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Single Figures

In my post transplant world, I have rarely thought about that pesky thing known as my paraprotein level. In the months prior to my transplant I rarely thought about that pesky thing known as my paraprotein level, for I was going to get the transplant anyway.

My blood is stubborn and so is the paraprotein and no matter what drugs I was given, it did not want to fall that significantly, oh no, it wanted to plateau. Plateau. If it was not plateauing it was increasing with aplomb. The bugger.

Way back when, I was told that my transplant would not bring me the remission I so wish for, and that the pesky thing known as paraprotein would remain. I am pleased the Medically Trained People told me this, for it meant that I could block out all the white noise to the contrary. I was told, that given my pre transplant level, to expect something around 10. And that is what I expected.

Today, I opened my post to find my post appointment letter and discovered that my paraprotein has indeed reduced. The miracle did not happen and it has not reduced to nothing. Damnation. Obviously. It has however, for the first time since we discovered I had one, a fact that is important to point out because there was indeed a period in my life where I did not have one, my paraprotein level has fallen to a single figure. I am so used to the template of the summary letters, that I thought the formatting was wrong, until I realised that there was missing a digit next to the word ‘paraprotein’.

My paraprotein is currently 8.

I do not know how I feel about this. At a guess, I would say that I am relieved that it has fallen below ten and my transplant achieved something, and on the other hand, I would say that I was disappointed that I did not get a miracle.

EJB x

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Turning The Corner

The Medically Trained People, last Friday, told me that I was about to turn the corner. I did not believe them, not really, and even when I did allow there to be a flicker of hope that I would cease to produce green lava from my bum and mouth, I could not envisage what my world looked like around that corner.

On Saturday, my bloods went up, but I still felt poorly. As I struggled to comprehend what my ‘worst’ was going to look like, I began to struggle with what my ‘better’ would mean. On Sunday, my bloods went up and then some, and I was told that based on an increase of my neutrophils from 0.02 to 0.2, the Medically Trained People thought I would be able to go home later in the week. Later in the week? But I am supposed to be in here for three to four weeks, not two.

And then strangely, I started to feel better.

On Sunday, I ate. I did not eat a lot, but I ate. I also had a blood transfusion, just thought I would slip that in because I had never had a blood transfusion before. Somebody else’s blood is in my body. Wowser. That’s Dad Science. On Monday, I was able to leave my room. Until I left my room, I had failed to realised that I had not left it for a week. That thought was quite overwhelming. Unfortunately for me on Monday, I also had to shave off my hair. I am bald once again, and this time, the patches of scalp are far more noticeable than they were before.

On Tuesday, I received my last bag of fluids, because the Medically Trained People had decided that I was now able to take my own fluids, without immediately disposing of them, for the diarrhoea and vomit stopped on Monday.

On Wednesday, I was told that I would be going home on Thursday, but probably Friday on Day+16. Not too shabby. Today, I had the magically sound of a plop instead of a shower when I visited the water closet.

All done and dusted right? Think again. We’re talking about My Myeloma here. Things are never that straightforward.

I know I am lucky to have gotten over the worst of this so quickly, and I am fortunate to be able to look forward to going home, but it all feels so strange. Beyond strange. If I have described my last 11 and a half months as twilight, I do not know what this is…. This week, I have no idea where Emma has gone, because in her place is somebody who does not know how they feel, what they want, and dare I say it, who they are. And don’t dare to try and answer those questions for me, because I am likely to shower you with expletives. I get the impression from people, that they think because the shitting is over, I should be fine, back to normal and so should my responsibilities be. A least, that is how some people have made me feel, and it almost feels like a set back. I can categorically say, with all certainty, that this is not the case. I am not back to normal. I am not healthy. I am not full of energy, the opposite is true in fact. I have not spent the last four days on my room plotting and planning my life on the outside, because I do not have the brain capacity to do that. I am fuzzy.

I have spent 16 days away from home, dressed in pyjamas, without any privacy, and all I want right now is an opportunity to be myself, in my own time. I want to wear my own clothes, I want to put my lipstick on and have a timetable of my own making, as much as I can, and not live in one created by a certain NHS trust. I want to get to midday, without having sen at least nine people, whilst I am in a state of undress. They prepare you for all the physical side effects, but they don’t really prepare you for this, not really. Well, I suppose I am fortunate, that as well as being in a place where they give me multiple bags of fluids, blood transfusions and so many drugs I hallucinated, I am also in a place that offers counselling, but that is after the fact. I am not ashamed to admit that I need counselling right now. I have been, correct, I am in the middle of a journey and I do not know what it means yet. We will not know about its success for at least three months. I am desperately trying to figure this all out, but I don’t have the energy for it. If a problem presents itself right now, I do not feel equipped to deal with it, and it would probably result in me crying on my bed or literally pulling my hair out.

Part of me feels like I need to give into it (which I do), the other part wants to go out and run down Tottenham Court Road with her tits flapping every which way, telling the world that I just had a transplant. In the last few weeks, but more so this week, my emotions have been all over the place. Happy, sad, lonely, suffocated, misunderstood, mad, angry, apathetic, hungry, unique. It goes on, and on, but one thing remains, there is one constant, no matter what my mood, I am always right. Always.

I have just had a transplant for goodness sake. I am allowed to be right.

The toilet issues, stomach cramps, oral thrush, sore throat and sleep were difficult, but this new world, is still difficult. Everybody in my Network needs to understand that and let this play out. I am going to scream and shout and let it all out, and I am told by the Medically Trained Professionals that this is perfectly normal. I guess, that while I have turned one corner, I probably have a few more to go before I feel like I can down a pint whilst baking a cake.

My immediate recovery may have been speedy, but there is still a way to go yet. Don’t go forgetting that. Disappointed? Try living my life.

EJB x

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0.01

I spent all day yesterday in bed. I did not shower. Filthy bitch. There were many reasons why I did not leave my bed yesterday and keep up with my personal hygiene, all of them, rather predictably, stem from stems. Yesterday, despite the fourteen episodes of slime and my cramps which felt like toddlers were doing the Macarena in my stomach, I felt like that side of things, my bodily fluids, are improving. It is hard to full decipher whether this is an accurate assessment, or whether it is an attempt by me to fool myself into thinking I am getting better.

That said, my fatigue don’t lie. By now, we have such a relationship, where I am merely passive aggressive with him, when he comes in expecting a clean house, dinner and the mental capacity to jigsaw. There is nothing else new in my bag of myeloma goodies, unless you count the sore throat, which worsened after I foolishly drank some water in my sleep yesterday morning.

In spite of all of this tomfoolery, during rounds yesterday, something exciting happened. It’s not actually exciting, it is just words, but to me, they were magic words because it meant that there is starting to be a foundation to my hope that this will be over soon. Dare I say, maybe even a scientific basis to it. The Senior Medically Trained Person told me that I was going toturn a corner in the next day or so. Tea! She did add that this would not result in me feeling better instantly, but I will feel an improvement at least. Tea! Please let it mean tea! Oh bugger, what does an improvement look like?

I occasionally thought about this between my snoozes and cramps yesterday. Like rock bottom was not tangible, neither is an improvement. It’s more fun to look forward to though. . The waiting again, is another thing that would frustrate, were I not on a healthy dose of opiates.

If I want something in my pocket, some proof, I could use that fact yesterday, I had a minuscule, as in, means very little, neutrophil reading of 0.01. Every other day this week, it has been less than that, as in, no reading. It’s a tiny step forward, but one that put a smile on my greasy face regardless.

My fingers are firmly crossed that today sees an improvement somewhere. Come on. My fingers are also crossed for a shower for I need to erm, remove some of my hair before it all by itself.

EJB x

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The PICC Line

The Peripherally Inserted Central Catheter sounds marvellous and it sounds scary. When I was told that I was going to have to have a semi permanent line whacked in my body, hanging out with my heart, I could categorically say that I did not want one. The thought of having something permanently poking out of me, did not make me want to do cartwheels. My line, my periphery inserted central catheter, which I just want to keep saying because it would muster up something stupendous were it not punctuated by the word catheter, is in my left arm.

If the thought of the PICC is scary, the first impressions, as I made my way into a bunker on the Lower Ground Floor, would have supported those thoughts, were it not for the staff undertaking the procedure. That is a compliment. I am going to call it a Procedure, because I thought it was supposed to be a straightforward needle, well, a slightly more complicated straightforward needle than I am used, but when I was greeted with two people in scrubs and cheap chef hats, I would have thought shit, but I am being a brave little soldier today.

It turns out, the precautions, the lengthy consent process, the scrubs, the blue sheets draped across my body, the face masks, were sensible window dressing, which seemed to bare no relation to the effect the Procedure had on me. Let’s face it, I really care about one thing when it comes to these things and that is pain. The thought of 54cm long tube entering my arm and ending up dossing in my innards, sounds like it could be unpleasant. It wasn’t. The sensation of blood coming out was the opposite; warm. It is rare that ladies get to experience that amount of blood gushing from something that is not an orifice. Sure, it’s early days, I have shown that I understand it is early days by putting pen to paper and acknowledging that things could go wrong.. Yawn.

Right now though, it is fine. There is a bit of blood in my dressing, I can feel that I am carrying around a bit of plastic, but it is not really that much more than your standard cannula. And everybody knows what the standard cannula feels like right?

I probably should explain, in case you unsure why I need a catheter in my arm, this little bad boy is going to be used to give me my intravenous drugs and take my blood whilst I am in Ambulatory Care and the hospital. Well, unless I fall into a minority of cases and it has to come out. Everybody loves the mechanics of this, so I will tell you that whilst it is used for the purposes mentioned above, it will not be used to give me my stem cells back tomorrow. Stem cells do not like the pump.

Back to this morning, all in, it took an hour. For some of that, I was lying on a bed flashing my knickerbockers because I chose to wear a dress today, and needed sticky things attached to my body leaving a fabric W shape decorating my crotch. Unusually, i requested a blanket to protect my modesty. The procedure was painless because I got local anaesthetic. I think I have a soft spot for local anaesthetic. When I was on the bed, I got to lay my arm out, left arm that is, whilst the Medically Trained People did their thing with the tubes, an ultrasound and an ECG. I also wiggled my toes.

The whole thing, looked a little bit like this:

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Twenty Three

Today is Results Day.

Paraprotein

To say I was nervous was an understatement. When I woke up this morning, I felt like I was getting up to get my GCSE results, and between you and me, I was disappointed with those. In preparation for today, I had somebody come with me to the clinic, just in case. In preparation, WM had bought me a multipack of Skips, just in case.

The actual result was an anticlimactic. My paraprotein is 23, down from 28 at the start of my last cycle, down from 40 since I started my treatment. In my head, this is neither bad nor good. I am pleased it has gone down, but I would have liked to have it fall below 20, just so I could say I have had a 50% reduction. At least it is working. A reduction is still a reduction and although this may be my last cycle, I could also have a further two cycles. If that is the case, I am only at the halfway mark. PADIMAC may have three more cycles to get its bum in gear. On the bright side, I now know I have the strength to take on all this cycle has to offer. Bring it on. I have food in my freezer.

Bloods

I don’t just get pricked for my paraprotein level. Oh no. Every three weeks, I have at least five blood tests, including five full blood counts and many other things. I am fortunate to have a Dad to explain these things to me, but I feel it is important to show you the gobbledegook. I tend to just look at the ‘L’ and ‘H’ in the far column. What the FBC says this time round is that my immune system is low, but I am not neutropenic. I am going back on the super foods.

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Pregnancy

This morning, with breath that was baited, I waited nervously to hear the word “negative”. Phew.

So there it is. And now I start again.

EJBx

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