Tag Archives: hospitals

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 The paraprotein test takes a few days to return and thus, and result I get will always be out of date, and will almost always require a phone call if I wanted to know what it was.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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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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My Reboot

For anybody who thought that a stem cell transplant was an operation in the traditional sense, my experience yesterday, would disappoint. There was no blue gown, no anaesthetic, hell, there were no doctors. After all the preparation, mental and physical, the ninety minutes it took for my stem cells to re-enter my body, was anticlimactic. It was a little exciting I suppose, but although I knew how I would get them back, I did not expect it to be so easy. Clearly, I know it is going to get worse now. The hard part comes after the Melphalan and after the transplant. When I left Ambulatory Care yesterday, it became perfectly clear to me, that all I have to do over the next few days, is to wait for my side effects. Wait for the hard part.

Although I found the process anticlimactic, I suppose that feeling comes from me not seeing an instance response or result, some tangible benefit, the process was still something to watch. Mamma Jones and Big Sister stood at the foot of my bed watching the whole thing, whilst saying, ‘I cannot believe this is it?’.

I arrived at the hospital yesterday shortly after 13:30hrs, as I had to wait a full 24 hours between the transplant and the chemotherapy. I was quite sleepy upon my arrival to the second floor, which went very well with the intravenous antihistamine they gave me to prevent an allergic reaction from the ‘freezing’. I am pretty sure that I looked stoned throughout the process and in fact, that particular look remained into I fell asleep shortly after 21:00hrs last night.

You get a private room when you your stem cells are infused, not because it is a private procedure, but really, because it takes up so much room. Tables, machines, a pot, more tables and drips. You really cannot have that in a communal area. Anyway, yesterday, some might have said I needed privacy, for it was hot and my dress was riding up to reveal my hot, big, white arse.

My stem cells came back to me in three bags. The bags were frozen to begin with, removed from some sort of contraption that looked like a prop from Jurassic Park’s lab, a smoking canister, then taken out of some popping bubble wrap and then placed in a medical version of a bain-Marie to thaw, before they were implanted in me via the cannula in my right hand. That happened three times. The cells were accompanied by a little bit of saline for luck. All in, I think we were done in just over two hours, from me walking through the door, to getting back out on the street, feeling woozy.

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I would describe my transplant as ‘nice’, like a cup of brew with a scone. Pleasant. I am thankful that the nurses treating me, knew me already, and I am thankful that they seemed genuinely pleased that I had finally managed to get to this point, and I grateful that one of them said she was honoured to be the person to do it and I was even more touched that she finished it be wishing me a Happy New Birthday.

Control. Alt. Delete. Let the reboot begin.

I said this yesterday, there is no going back now. I have to sit tight and wait for illness, and as the Macmillan Lady just said, that lack of control, must be something that I will particularly struggle with. She is correct. I really do not cope well with waiting.

Troubleshoot.

EJB x

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Nervous

I am not going to lie, this morning, I am all about the nervous fart.

Thank goodness my window is open (for about twenty more minutes).

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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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Priorities

Don’t let anybody tell you that I do not have my priorities right.

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The Decision

Yesterday, I had my clinic appointment when the dreaded stem cell transplant (SCT) was discussed. Big Sister came because she is a stem cell match to me, but more importantly, because sometimes, I need a little bit of support. Big Sister was great, she asked most the questions and took notes. I just said ‘yes’ quite a lot and talked about my favourite subject, my bowel. I found out afterwards that Mamma Jones had also provided a typed list of questions. I think they knew I would forget to ask.

After much discussion and facts, I have decided to go ahead with a transplant using my own stem cell , over going with my sister’s. I say decided, I was strongly influenced by the Medically Trained People to go with this option at this point in time. I’ll be using these terms a lot, so take note, my own transplant is called an Autologous transplant, and a donor transplant is called an Allogenic. Auto or Allo of short. So, I am having an Auto.

Prior to my appointment, I had done some research into what both procedures entail, and I would say that I am reasonably prepared for both. Though, at the moment, I am more at ease knowing that the Auto does not come with a 10-40% mortality rate. I also know two people who have known me since I was a greasy, obese teenager, who have been through it personally. My friend Rachael, in fact, came round shortly before Christmas and told me about all the side effects and how it was for her Dad when he had his. Basically, all the negative stuff: the vomit, the hair loss, the shitting, the weakness. This knowledge has been invaluable (apart from stem cells smelling like sweetcorn, I am forgetting this, for it is my favourite vegetable), and thus I do not feel like I need to know anymore about it. I do not need to know how long I’ve got before it comes back based on how long others have had, and I do not need to know how others have managed. It may sound selfish or ungrateful, but My Myeloma is my own and I am prepared for what is going to happen next, I have a plan on how I am going to do it and thus knowing more will only confuse the matter. That said, I still have some reading to do, just so I know how it will work at UCLH. Indeed, I was given a whole stack of papers about it yesterday and I have one document called ‘A Guide To Autologous Haematopoietic Progenitor Cell Transplantation’, it is a page turner to be sure.

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A whole stack of papers

I was somewhat disappointed that the provisional timescales I was given last week and before Christmas were slightly different to the ones I was given yesterday. I am sure a week or two does not mean that much to the Medically Trained People, but it means a great deal to me. Where I had thought that I would be out of hospital by the end of March, it will now be the end of April, and where I had thought that I have four weeks before it all starts, I have six. Six weeks of waiting. I want to get on with things, and these added weeks just prolong the matter. Anyhow, it is what it is, and I am getting over that disappointment. Flip the coin and it can be six weeks of quasi-fun. My next dose of chemotherapy is on the 16 February and until that date I am treatment free. There are tests to be done and appointments to be had, but nothing that is going to make me feel more tired than I am usually.

Crucially, I and the people who love me, have to be realistic about the procedure. I am sitting on a paraprotein level, which the Medically Trained People think has plateaued. It is still high, and I should not expect it to be completely gone after the SCT. It may go, but in all likelihood, it’ll just reduce. I am told that it can reduce to a manageable level where I will be able to just get on with my life and be normal and if that is not the case, I have the option of the Allo or a combination of the two, or whatever else they want to throw at me. Nobody knows the answer to this one until it is done.

For the time being, I await with anticipation the SCT and possible end of this current chapter of My Myeloma and that is all that needs to be said. Obviously. I’ll let you know more about the procedure closer to the time, when this confidence has dispersed or, when I have run out of other things to say. Which ever comes sooner.

My name is Emma Janes Jones and I am having a Autologous Haematopoietic Progenitor Cell Transplant.

EJB x

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Manageable Chunks

Since my diagnosis, I have very much been a fan of managing My Myeloma in chunks, or sections if you will. I quickly realised it was the only way to protect my brain and thus my person, and I guess others, from a mental breakdown. I’ve allowed myself to think about the future, but only briefly, for thoughts are swiftly pushed out for me to focus on the now (or then). I have lived within each three week cycle and each cycle only. This got me through PADIMAC. The future was for me to manage in the future.

I now find myself in my future.

I have known since October that I would require a stem cell transplant at some point and when that point arrived, I would need to make a decision about whether I had my own stem cell or Big Sister’s. If it was scary before, it is terrifying now. As scary as the transplant seems, it is the decision before that which is plaguing my thoughts and my dreams. The decision is not months away and something that can be put to the back of my mind anymore. The decision is imminent and I have to decide whether to bring my volatile best player out at the start of the match, or wait for extra time.* It’s length of remission versus possible death, without any certainty of either.

Decisions, decisions, decisions…

I am yet to consult properly with my doctors about this, that is on Wednesday. Fun.

Manageable chunks seemed to make so much sense before, but I do not have a screaming whatsit what I am going to do now.

It is all I can think about.

This sorry tale will most definitely be continued…

EJB x

* A Twin gave me that metaphor. I like how it only partially works.

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