Monthly Archives: August 2013

Exaggeration

At times, people can exaggerate. It’s true. Everybody in the whole human race exaggerates. See?

Sometimes the added flare to one’s tale might be ever so slight, other times, it really can border on the Lie. I would like to think that I only exaggerate when it is absolutely needed. Let’s say, when I want to make a good story, awesome, in an attempt to make you think I am interesting, funny and/or brave. It was the bestest film I have ever seen, today was the hottest day known to humankind and I really was that eloquent during the conversation I just told you about, and their delivery was exactly like I depicted it to be.

In terms of My Myeloma and my experience with it, I find it very difficult to tell if I exaggerate or dare I say it, recognise it when I have exaggerated. With My Myeloma, it is very true to say that I live in the moment. By that, what I mean is that if I am having a good day, it feels like the best day I have had since before my diagnosis. That sort of exaggeration is fine. The bad days?

The real exaggeration ultimately comes on the bad days or when I am feeling bad, and that includes the mental and the physical, by the way. Both can be so dreadfully awful, that one feels like they are the living dead, trapped in purgatory and nobody and nothing, I mean, nobody is or has ever, ever felt this way since before the dinosaurs were frozen to death.

Mentally, the exaggeration is just for me and my own personal consumption, unless it is really bad and then it might spill out to others. I am not sure yet how to articulate this, but try and trust me when I say, it can be bad.

When I feel poorly and suffering, I find it very difficult to remember a time when I have felt worse, so in that moment (moment is wishful thinking), I feel like I am in hell and there is no escaping it, although I know eventually that there will be an end. To get this across to others and to get them to understand, I may at times, unwittingly, makes things, the pain, discomfort and general grottiness sound worse than it is. Granted, even if it is not the worst I have ever experienced, to the majority of people, I am sure they would find what I am experiencing pretty horrific. I have seen how people cope with the common cold, social networking makes that possible.

I cannot always remember how I felt before, and when it has been particularly unpleasant, I try to forget it as quickly as possible. I loathe it when people say they have the ‘worst’ so and so, or over use the word ‘ever’, but I am guilty of it, some of the time. Not all the time; I do not want to exaggerate. I just cannot always remember. I really should have maintained and backdated my attempt at a Pain Diary, because then there would be some historic data to judge my throwaway comments and thoughts against. It was just too time consuming and lets face it, though I am the only one to have seen it, it was depressing. Granted, the diary was still my interpretation of events and it was not qualitative proof, but if we understand the limitations of the source, I personally, would feel more confident to quantify my realtime feelings and experience to others. A barometer if you will… It would be lovely to say to somebody, today, Somebody, I am at a 1.5 and have them know exactly what I mean.

And so, the purpose of this, is to tell you, that last week I exaggerated. In this very format! As I lie on my bed with just three pillows typing, curled slightly to my right, I can with some certainty, that my pain and my mobility is not as bad as it was last September. Anybody who saw me last September and saw me now, would be able to tell me that. My friend laughed at me last week, when I realised this fact whilst I was sitting on my sofa, having navigated my way around the pouf, with my legs crossed. She then proceeded to remind me that in September of 2012, I could not lift my arms above my head nor bend down. So I exaggerated. Whoopsie. Apologies.

So how much pain and I in? The answer is, a lot. How is my mobility effected after my transplant? The answer is, a lot. Clearly, I will have to perfect this when I finally send off my claim for disability allowance. I need a Blue Badge, man and I do not know if that is an exaggeration.

Best wishes,
EJBx

P.S. I may overstate, emphasise and distort the truth on the rarest of occasion. I am certainly guilty of blowing the odd thing out of proportion. Hell, I exaggerate. To be clear though, I do not lie.

Tagged , , , , , ,

Wig Maintainance

The one and only benefit to being a baldy unless you are Bruce Willis, is the speed with which one can get dressed. Not having to wash and manage my wonderful, former mane has saved about an hour per wash (I don’t want people imagining that I was doing anything wonderful with it, like brushing it 100 times, I had a life, that was simply, necessary drying time). These days are quite different, I can officially was and go. In and out. The introduction of fake eye lashes to my regime may change things slightly, I am told they require precision which I do not have, but for the moment, when I have energy that is, I am speedy as my foundation brush strokes will imply. Speedier than I was anyway. I still have to decide what not to wear.

I had failed to recognise something however, when it comes to my new regime. It is a relatively simple thing. The guidance came on one side of A4 after all. The simple thing is, washing the wig or in my case, wigs. Until today, I thought that the need to do so, had not yet arisen. I was contemplating it, but it was not yet something I felt was sufficiently urgent for me to spend my energy credits.

The majority of my wigs are straight and in terms of cleanliness, I am looking out for two things; grease and smell. I have not witnessed either. Today, I witnessed something else entirely, deep within the depths of my curls and that my friends, is the little known problem of the dried spider. In some territories, I believe they call it the candied spider, due to the sticky surface which imprisons the spider in the synthetic weave before it is placed in a hot room in front of a window in the middle of summer to die. If you are still uncertain about what happened this morning, let me enlighten you. As I repositioned my wig on my head, I discovered on the fringe, to the left, something that resembled a knot, but it was actually a long gone to the after world spider. An animal. In your real hair one gets lice. In wigs, you get dead spiders. Apparently.

Clearly, I am now concerned that my wigs are mass graveyards and I will be attempting to rectify that in the near future, if I feel that way inclined. However, I am well aware of who I am and my limitations. So should you be. The most recent evidence supports my recent theory, that I am, one big, dirty, rat bag. It’s not because I have cancer.

20130823-172128.jpg
Exhibit A

20130823-172141.jpg
Exhibit B

Tagged , , , , , , , , , , ,

The Pain Game

I do not think I have any right to complain about my pain. I have the right to complain about My Myeloma. Not the pain. Not right now.

The truth is, and this has been the case since last October, that the Medically Trained People have given me additional medication to alleviate some of the pain. That medication is called Oramorph. I would have mentioned it before, such is my distaste for the stuff. See for yourself https://ejbones.wordpress.com/2013/01/13/oramorph/.

The difference between now and then, is that I have taken Oramorph since. I took a lot if it in fact, during my 12 night stay with T13’s Angels. My reunion showed me, by slapping me in the face, why I should not take the stuff unless I absolutely, positively, cannot open my eyes due to pain, have to. Despite the pain I am experiencing now, it is not the time to take it. I do not need another cause of fatigue and delirium, and that is what it would give me.

At the moment, the benefits of the ‘morph are far outweighed by the disadvantages. I absolutely would like some temporary pain relief. I really wanted it a week or so ago when I had lady cramps rivalling childbirth. Morphine for period pain just did not sound right. In the end, as I am not allowed to take ibuprofen anymore, I settled for codeine (after checking with a Medically Trained Person). My life would be easier if I did not experience pain, but Oramorph does not just reduce pains, that’s right, plural. Oramorph makes me slur, it makes me sleepy, it makes me groggy, it makes everything appear fuzzy, and as I experienced in hospital, it can make me hallucinate.

Recreationally, some people, not me for I missed that boat and my addiction to beer is enough, would enjoy some of those symptoms, but when one is already feeling shite, it just gives you further reason to feel shite. The icing on the cake now, is that I need to take a fairly hefty dose for it to have an effect on the target area. After all, I have taken a form of morphine everyday for a year and two days; I have tolerance. Most the time, if I do not skip a dose or am I voluntarily trying to reduce it, I take 60mg of it a day. I was told by the Medically Trained People that this resulted in me needing more of the liquid stuff when I was in dire straits. Essentially, I am a druggie. I suspect, without any medical proof or advice, that this is why I experienced the other side effects so keenly.

Do not get me wrong. I like the feeling of loosening up, maybe even losing a bit of control with the help of substances. By substances, I mean alcohol because I am a square. Maybe not a square if you have seen me when I am drunk. The feeling morphine gives me, is far beyond a loosening up. It’s like I have tinnitus of a floating body.

If you had not guessed or did not know, morphine is a controlled substance. If for any reason I was to visit a prison, I would not be allowed it in my handbag. That fact it is controlled makes you know it is strong. I intend to make a punch from it when I am done for my guests at a mature and grown up party. Not really Pharmacy. I am very sensible with my drugs and follow all the rules. I concerned myself early on that morphine was controlled for a reason and in it’s breakthrough forms, was addictive. This just have me further reason to stop last Autumn. Four addictions was enough already (cigarettes, beer, fizzy water and EMan). I do not need anymore.

Most importantly, and this is what is overrules the pain, I want to be able to think and speak like I have thought. Oramorph does not afford me that pleasure. I had two days in my cell, where I had spent hours feeling and looking like I was about to give birth to an energetic octopus, so gave in and asked for the ‘morph, which resulted in some pretty funky dreams. They were not dreams, for I was awake. I know O was awake because on one occasion, my vision carried on whilst I got up and pooped the green.

My special trip felt like it went on for hours. I have no clue of it’s actual duration, but it clearly derived from the pain I was in. I imagined there was an entire planet inside my stomach, which existed within a red theatre with stalls, circle, a dress circle and an upper dress circle. The planet was made up of ants who were appeared human, who walked by playing the drums. It went on and on and on. The more it went on, the more uneasy I became. I do not recommend it. The following day, I knew, that Oramorph and me, should only go together in a controlled environment.

Aw, the choices we have to make. I choose me.

EJB x

P.S. I maintain that I can withstand a considerable amount of pain, especially with the MST. Myeloma did that for me. I guess, pain in itself, does not scare anymore, not after the fractures and all the pokings. That said, the all consuming pain experienced during my menstral cycle, which was post transplant and post artificial mess me arounds, was surprisingly. Women and men, I can honestly say, that the pain of that period was on par with my first rib fracture. I may even have preferred the rib fracture. True story.

Tagged , , , , , , , , ,

Operation Build Up

Building up my strength is no walk in the park, for I would not be able to go for a reasonable walk in a park. Clearly, it is comforting to know that I am now in a position where I feel like I am ‘building myself up’, but it is more difficult than I anticipated, in the various scenarios I had in my head prior to my transplant. For example, I did not envisage that I would find it just so difficult to motivate myself to wash, and think about it, I don’t even have hair to wash.

Last week, I left the house three whole times. That’s right, in seven days, I left three times. Thankfully, there is a bit more space here in Mamma Jones’ house for me to wander, than there is in my flat. That benefit is balanced by the fact that in the working week, I am alone between 08:00hrs-18:00hrs, bar two pedigrees including one who actually likes me. When I am tired, this does not matter, if I get a window of energy, it does for I am trapped. The beauty of ‘building myself up’ is that I cannot predict when I will have a window of energy. There is no rhyme nor reason to it, and for that reason, I am reluctant to make plans (disappointing others hurts my forehead). One minute I could be lying in my own filth and the next, I am able to the my times table once more whilst simultaneously leaving my bed. The windows do not include cartwheels just yet.

As part of my recuperation, I did consider that I would have lone windows and I have activities for these. These activities are productive, but whilst they are productive, they are nothing like me crossing the threshold and entering the big wide world, which I cannot do alone. Getting dizzy next to the River Welland just would not do. Doing things in the outside world, has a different response to my body. I described the sensation to a friend at the weekend; for every two hours of activity in the real world, I can guarantee needing to spend an exhausted eight hours brain dead and horizontal as payback. My experience, thus far, is that I can feel fine and dandy one minute, and the next, well, I just don’t. Inconsiderately, the fatigue does not appear when I return to the house, it can actually happen anywhere. The colour can drain anywhere.

Yesterday, as part of Operation Build Up, I used my National Trust membership and went on a 20 mile trip to Isaac Newton’s family home, I even saw the genuine apple tree. It all looked very pretty. I say it looked very pretty, for I was completely incapable of taking anything else in. I blame my activities the previous day. The science museum there, full of all these fun little experiments, was lost on me. I just like the sound of the pool ball hitting some bells. Ding, ding, ding. It was good. The day before, I spent a good five hours, two and a half of those were outside, with Big Sister and her offspring. The offspring can be pretty tiring when you do not have cancer and are on day + 31 of a stem cell transplant. I was wide awake with them, until I wasn’t, sleeping on the sofa incapable of moving, but able to complain.

The post outing fatigue really is frustrating. It is more frustrating than the insomnia that comes if I have not done enough in the day. The first night I had insomnia, was the first night I knew I was improving. The improvement is just so slow. I had hoped that by now, I would be gearing up for a return to my nation’s capital, but I am not capable of looking after myself yet. I am 29 and I cannot look after myself. Catch.

Operation Build Up, has two distinct parts. I have mentioned before that one of the many benefits if myeloma is that one does not just have a deadly disease, they also have varying degrees of weak bones and pain to contend with. In case you did not get it, I do not think that this is actually a benefit of myeloma. Anybody who has spent a significant amount of time in a horizontal position, would, I imagine, experience some difficultly when trying to resume their normal duties. Stiff knees and jelly legs. I had/have that too. For me, my return to vertical living, adds a whole new challenge, separate to my fatigue and much, much much more painful. I have a back. I am telling you I have one, because apparently, it is a little attention seeker at the moment, and it wants everybody to know it is there. I can walk for less than five minutes before I feel it. I am attempting to carry on in spite of the pain, this is Operation Build Up after all, but it gets to the point where I cannot and I am forced to lie down, even if I do not want to.

I would say that the pain I am experiencing, is reminiscent of the pain of September 2012. I struggle to stand, getting out of a car is a treat, I need that stick more than I would like, and when it is really bad, I waddle. Last time, it took me two-three months to walk far distances without experiencing the pain and three times as long before I could carry more than one bag of shopping (I am not sure if I should be doing this anyway). I do not want to have to wait for two months. I do not want to have to sit down or lean every five minutes. How am I expected to cook? Hang on, I can’t do that anyway, for I do not have the energy. In some ways, the pain is more frustrating than the lack of energy, because I have already overcome it once. It feels like regression, and I do not like that. Combine the aches, with shortness of breath caused by the fatigue and I look like I am from Boston, Lincolnshire if I were to take the Daily Mail as gospel. At times like this, I start to get angry with the lovely locum GP again and the delay she caused to my diagnosis. Without the delay, maybe it would not be as bad and I could recover with more spend and agility. Maybe.

It is what it is though, and getting angry and overly upset is not going to improve it. It is a matter of practice, exercise, patience and pain. I have to let the pain in, in order to improve. I am going to have to be a bad ass. It’s doable. Plus, I can sit smugly in my bed, pleased that I requested an appointment with a physiotherapist having anticipated some difficulty in this area, and have the exercise technics on a piece of A4 paper. Listen up boys, I will be strengthening my pelvic floor. Woo. They key to this though, is doing them.

With that then, I am going to get out of bed, and do something for as long as I can, before I can’t.

Get to it.

EJB x

P.S. Just to give the full spectrum of my world, I am still suffering from nausea. It’s morning sickness really, for I predominantly get it as soon as I wake up and that generally causes a delay in me getting up. I attempted to stop taking the pill that prevents this, for that causes something to get worse in my bowel, but for the time being, I cannot. I need to pop that medium strength pill at least once a day. It’s okay though. I am not up the duff.

Tagged , , , , , , , , , , ,

Happy Anniversary

Get ready throw paper in my general direction, for today is my first anniversary. Correction, our anniversary. Who would have thought that one year down, and my arranged marriage to myeloma is still going strong? We haven’t even needed to take a break yet. We have been entwined for 364 days. Myeloma and me.

One year ago, on that fateful Friday afternoon when I was told that they were almost certainly had myeloma, I had no way of envisaging what that would look like and what it would do to me. I don’t think anybody did, even the Medically Trained People.

Since the 17 August 2012, so much has happened, and though at times, I feel like I have absolutely no progress whatsoever. It is gone quickly and at a snail’s pace. Sure, I had a partial response (that’s officially terminology you know), but then I didn’t. I then had another course of treatment for which I had a limited response (that is not officially terminology), and then I had a transplant. What comes after that is for Year Two. I said it at my halfway mark, but it does not hurt to review what has happened to me since I was diagnosed.

Medically, it has been a total treat for me. I now have a high pain threshold, I am excited by my faeces and developed a fear of Oramorph. These things have happened because I have had two different courses of treatment, which in total involved 40 Velcade injections, 24 doses of Doxorubicin, 224 thalidomide tablets and 800 horrible Dexamethasone tablets. Lord knows how many maintenance drugs I have taken, I wager that in the tens of thousands. I have had radiotherapy on my right hip, which is involved me getting a tattoo on my lady garden. I had my heavenly Kyphoplasty. In February, I got to have a large bag of cyclophosphamide leading to a rather pleasant bladder infection and a trip to A&E. I have no idea how much bone juice (Zometa) I have had, but I know that has done some good. They have drilled into me three times, with three bone marrow biopsies. My stem cells were harvested and then after a lengthy and devastating delay, they were put back into me. If I had been scared of needles one year ago, it would have been, well, pretty buggered. In addition to the medicines and procedures, I have slowly watched and be told that my veins have become shyer and shyer, I have managed hair loss including losing all of it twice, I cracked a few ribs and I taught myself how to walk again without grimacing and dealt with the high probability that I will not be able to have children.

It’s not what I imagined for my life.

I discovered early on that myeloma is not just about the medicine. It is about me. As I have struggled with my drugs, and the lows getting lower, I have had to deal with myself and I never know if I have managed it properly. I have no idea how I have taken it all in.

Fatigue, not working, becoming disabled, accepting that my lifespan has reduced, whilst trying to block out the noise from strangers telling me that I will be dead in ten years (nine years now) for I do not plan to be. It has and continues to be an emotional roller coaster, and it would be that anyway, before we factor in the mood altering drugs. I have cried a great deal, argued with friends leading to more tears, I made certain people key players in my Support Network regardless of whether they asked for the role or not, consequentially, I have felt and continue to feel a warm fuzzy feelings of love when i look at their faces, but flip the coin and I have also felt disappointment when people have not lived up to the expectations I put upon them. I fancied myself in love and had to deal with the heartache of realising I am Glenn Close with cancer. I have been angry with everybody for not understanding how I feel and jealous at them for not having to understand. I have experienced such feelings of isolation and loneliness, on the island that is my bed that I have sobbed uncontrollably for hours. In a year, I have given up so much and yet, I have I still wake up everyday.

Some time ago, well, within the last year, somebody said to me that he knew I would be fine (he was talking about my mental state, for he was not a Medically Trained Person, a first aided maybe). He said this because unlike other patients he saw, he said that when I answered questions about My Myeloma, he saw a laughter behind my eyes. I do not particularly buy into that sort of greetings card language, but I know what he meant and I felt it. I felt that my personality was still there and I felt like my glass was half full, all in spite of the wretched disease. I do not know if I feel that now, not everyday. Over the year, I have felt My Myeloma slowly suck out some of my positivity. It hasn’t gone completely. I hope it will not go completely, and I am clinging on to it for dear life. It just feels like it has depleted. I am not looking at myeloma with rose tinted glasses anymore. Big Sister says I am morbid, but I see it as realistic.

I have had few days where myeloma has not featured, and had many days where it rules. I still do not want my myeloma to define me, but I know now that it has to form part of me and my personality has changed. That is what the year has shown me. My Myeloma is omnipresent. I have dealt with it by living around it and getting on as best I can, but it is there. I know that this is all I can do.

So, one year down. The only thing for me is to continue to get out of bed everyday, and hope that I can remain strong enough not to let My Myeloma to consume me. That would just not do at all.

As for my Support Network… Thanks. Go easy on me yeah?

EJB x

Tagged , , , , , , , , , , , , , ,

Ice Breaker

I giggled to myself two nights ago in bed, and I giggled with Mamma Jones last night in my bed. The exciting life I lead. I was giggling because after my day out on Tuesday, I realised something. I realised what transplant related story, I was happy to share with people as a form of banter, to get out of the inevitable questions I am going to get when I return to my beat. At the moment, one thing is true, I cannot talk about my transplant and illness without feeling emotional. I know for a fact that I would not want this emotion to happen in public, so, there has to be an accepted topic that I can get animated about, and use to portray, that cancer is not a big deal at all. It’s dead easy in fact. The accepted conversation is going to go something like this:

Caring Individual: [they may or may not be inclined to tilt their head to the side] How are you? How are you feeling?
Me: Fine thanks [pause and hope that will be the end of the conversation]
CI: So, are you feeling okay?
Me: [smiles] I’m just bloody relieved those burps have stopped. They don’t tell you about that one. I just burped all the time. Sip of water, burp. I was burping all over the place. And the strange thing about these burps, the sound of my burps changed…. I’m a big girl. I can do some big burps, but with the transplant, I did baby burps. Teeny tiny, cute little burps…. It’s all linked in with tummy problems I had following the chemo. It was just bloody embarrassing. Imagine, you and I could be having a cup of tea, and uncontrollably, I would have to burp in your face. All the elegance would go out the window. Gosh, [fake laughs], that wouldn’t have happened in my former life until at least six pints of Kronenberg. [Still laughing]
CI: [content] wow, that is so strange…

Me: Yeah, so like I said, I am feeling much better.*

I suppose, I could take somebody’s wise and dogged advice, but it does not work. I have tried it for 362 days. Obviously, there are some people to whom I would share more information, but there is a time and a place for these things, and it is my experience that the probe comes at the least suitable time, without a curtain, in full view of strangers and/or people whose view of me should be ‘bad ass’. I need a plan. I need back up. And this is it. Just do not tell anybody.

I would also be willing to share with people the fact that I have lost all my bum hair, but that sort of thing should be saved for the close friends I think. Society tells me so.

EJB x

* subject to some improvisation if required. May include a demonstration.

Tagged , , , , , , , , , ,

Invincibility

On Tuesday, I had to drag my sorry bum to London Town for an appointment at the hospital. I was not looking forward to it for the simple reason that I did not know whether I would physically be able to manage the journey there and back again. I had been dreading it since the day of my discharge. It was going to be one long afternoon. Fortunately, I had an escort.

It would appear, that for the time being, I once again need an escort for all activities in public. If I am honest, I like to know that somebody, whilst leaving me alone, is in shouting distance when I am in private, so for outside world… The outside world is once again, a scary, terrifying place. Avoid it for a month, without a medical procedure and see how hot you feel. I’ll let you into a little secret, I got scared feeding the ducks the other day, not because I think mallards are evil, they are not, it’s because I was convinced everybody was looking at me and oblivious to me at the same time, meaning, the general public, that mass being, exists to take me out, to take me down. Danger. On Tuesday, in Kings Cross Station, I found myself wanting Middleborough’s human protection force, which is activated in crowds. It eases the internal panic. The bubble. Fortunately, I had my stick and my Mum. The train itself was fine. That my friends, is called First Class.

Getting dressed, when you have not put clothes on for a while, is interesting. My clothes are still not baggy. I may have felt marginally better than crap when I woke up on Tuesday, but I would be damned if I did not make an effort. Whilst I was making an effort, I discovered that I may now require false eyelashes. I knew I would require a wig. The double hat thing is not for me. I was also reminded of the fact that lipstick gives me power. Getting dressed is a funny thing, it is still my armour; the power of it can be considerable. I arrived at the clinic and I saw somebody who had a transplant the same day as me, and I realised that I, with a wig on my head, do not look ill. I do not look like I have cancer. Still. A lot of people in the centre on Tuesday did, but I do not. It doesn’t make me better or worse than anybody else, it’s just an observation that I do not understand. I am ill, so why do I not look like them? That said, I did enjoy the compliments and I am vain enough to continue wearing a wig in the heat because I want them to continue. Especially because I am still obese. Maybe I have the obesity to thank for my current skin deep, make up assisted, look of health. I still remember last year, when I was diagnosed, I had a very nice doctor in hospital, who failed to recognise me as an outpatient, because I ‘looked so different’. It’s called style babes. Anyway, he recognised me when he saw me a few weeks ago in hospital, in my coton pyjamas once again, after I had just shat out some green goo and was sporting a greyish hue.

The appointment itself was good. That is the point of my story. In fact, my appointment was positive. It was so positive, I could feel my mood instantly shift and hope, somehow magically returned to my being. Hearing the phrases ‘you’re doing incredibly well’, ‘your bloods are almost normal’ and ‘you do not need to come back for a month’, from a Medically Trained Person, made me smile. I do not feel like I have had much to celebrate of late, but hearing that, made me feel better. Hearing that I could go abroad in two months, go to the cinema NOW and that I can ease my strict diet, made me feel invincible. Mamma Jones was amazed with science that my bloods, bar my neutrophils, which are hovering just below 2, are back within normal range. Even my white blood count, which is low, is in a ‘normal range’. Let us hope the paraprotein has not picked itself up quite so quickly. Really.

My invincibility was great. I was dishing out the banter to anybody who crossed my path, I ate a large hot pork roll and crackling without any concern for my welfare, and more crucially, I gulped water. I even had three whole sips of fizzy water. I did it all, because I was invincible. There would be no consequences. So burps, no sick, nothing.

Not nothing baby. Do you know what happened next? I got tired. All so very tired. My bloods might be getting back to normal, but my fatigue is still around. It’s here and it can take me down very, very quickly. I was told during my appointment that this will remain for a while yet, and I still have to give in to it. I just temporarily forgot. I also forgot that drinking still makes me nauseous, but there is medication for that. I believe, halfway back to Peterborough, I crashed. The crash is not me being a wee bit sleepy, a crash involves my head becoming heavy, my body aching, blurred vision and adopting the walk of an OAP thirty four years after the point they officially become a senior citizen. In Toys’R’Us I could barely stand and by Tesco? Well, I wanted to vomit all over the public. On my return home, I got into bed fully clothed and fell asleep, and I spent most of yesterday in bed too, with a brain full of mush. I expected as much. My nurse was correct, I am going to get frustrated by my fatigue, but for the moment, there is a balance to be made and I still need to accept that.

I mentioned the other day subtle changes. Stay in your seats, but on Tuesday morning before I went on my adventure to Euston Road, which I never want to see again, I managed to walk up my parent’s staircase (my room is downstairs, so it is not something I do everyday, I’m just setting the scene, like I said, stay in your seats) and I did not get tired until I reached the top. That would not have been true a week ago. Two steps made my legs feel like jelly and made me feel like I was in danger.

Subtle changes. I am still tired and I am still in bed, though I am contemplating putting a bra on and moving into the lounge.

I can do anything I want to baby. I am invincible. Within reason. I still cannot drink a lot, nor eat a lot, I guess I cannot stand up for long and my brain is still fried, but, you know, invincible.

Cancer turned me into a super hero.

EJB x

Tagged , , , , , , , , , ,

The Red Herring

What does feeling better feel like? Are we there yet? How much of the biscuit have we had? Half? Three quarters?

Yesterday afternoon, I told somebody I could see it. That I could feel it. feeling better. In my sleep on Thursday, I finished a bottle of water and when I woke, I requested another bottle. I was drinking. I wanted to put a bra on. I also had an improved attention span, accompanied by a reduced desire to sleep. I did two jigsaw puzzles. Such was my improvement, that I took myself out of my bed and onto the sofa. I moved rooms. I also cooked something in the oven. I had faith that I would not fall asleep in the 20 minutes it took for me to heat some chips.

I was not capable of standing for a long period of time nor was I able to explain the principles of utilitarianism, hell, I still cannot of getting dressed, but I felt better. To me, yesterday’s improvement did not feel subtle; it felt magical. To anybody else looking in, I am sure I still looked like a weak person, with cancer, in need of assistance. The changes I experienced, to them, would have been subtle.

My physiotherapist recommended that I keep a diary of this period, noting what I could not do, by day, so I could look back a few weeks later, and realise the improvement. Up lifting, page turner. I should have known then, that this was going to be slow. And the improvements were going to be subtle. I am not keeping a diary by the way. I do not need further evidence of my regression to childhood.

I hate the subtlety of this. I hate giving my body time. Hatred and frustration defines me at the moment. I want improvement to move at the speed of light. Failing that, I would take improvement at the speed of sleep. I want to fall asleep feeling like I currently feel, to wake up and find that I can get dressed, stand up for longer than five minutes and leave my house for six hours. I am not unrealistic. After those six hours, I would expect to be tired and I would go back to bed. I just want those six hours. In that six hours, if I could not leave my house, I could bake or hone my arts and crafts skills. I could do something that is not lying.

The mental anguish this subtlety puts me under is worse than the physical pain I have to endure. My physical worries are not great enough to make me not notice my incapacitation, but they have not improved enough for me to be where I want to be. All this does is give me time to think, time to dwell and time to get mad.

It is a wonder that I am able to speak to people without shouting or crying the minute I open my mouth. I feel like doing both, but the latter for sure, would be a real waste of the water i do drink. I presume that the opportunities for me to converse are currently so few, that my survival mentality kicks in, and I have to be nice and calm, to ensure that they come back. I have to not show I am upset. I become grateful.

I am constantly being asked whether I am feeling better, and I appreciate that of course, but my improvement is too slow to provide am answer. If I answer with a negative, is that just me, being negative? If I answer positively, people misconstrue the significance of the improvement. Better is not better.

Yesterday morning I did feel better. My ability to drink more than a sip, was the key indicator. For a period, I was also able to converse. I was walking around. I did a fruitless search for dead rodents in the garden. For an hour, it felt like a school holiday. And then, it did not. I couldn’t do those things. Better is not better. My deterioration was not subtle. Every gulp of water I had had, every morsel I had eaten, during my period of good health, rudely and uncomfortable made a reappearance. Once my stomach had emptied itself, without the need for digestion, I became a weak little thing who needed her mummy. Vomiting is never fun.

And that brings you up to the present. I am in bed. I am weak. I am not wearing a bra. I am frustrated. I also keep forgetting that I cannot lean or roll to my left, without causing a lesion headache.

All of it, really is very annoying.

EJB x

P.S. Thursday’s Full Blood Count did not contain any shockers by the way. My boaster from the previous Thursday had worn off, but everything seems to be ticking along.

Tagged , , , , , , , , , , , ,

Movement

After a lengthy period of the trots, I am informed that some individuals, may experience constipation. When one is taking six drugs on top of other drugs, which is said to lead to blockages, a person may experience constipation. When a body subject to change, experiences a lot of change, I imagine, a human, may experience constipation.

The Medically Trained People expect some difficulty in this area, and persons who may be troubled by infrequent stools, are offered medicine, to ease the process along somewhat. Some individuals opt against using this medicine because it makes their insides feel like they are on fire, regardless of there being a need to incinerate their waste or not. Such people, let’s call them patients, may suffer from lengthy periods of constipation, especially, when they usually use their diet to regulate such things, and they currently do not have a diet to speak of. Tricky.

Sometimes though, life cannot be that bad. Life cannot be that unfair. And so, today, after a six day absence, it gave me great pleasure to say “welcome back Buddy, welcome back”.

Thankfully, it was a painless reunion.

I called my Mum.

EJB x

Tagged , , , , , , , , , ,

The Recovery Position

Take one hefty dose of fatigue, mixed that with an equal measure of impatience and what you end up with is a toxic amount of frustration.

I am very frustrated. I am the picture of horizontal frustration.

As with everything related to this procedure, the frustration grows from me not knowing how long this fatigue will take to get lost. I have not lowered my standards enough to say ‘do one’. I still have some brain cells working. At least I think I do. I know that the fatigue can last a long time. I also know that it might only last a few weeks. I know, that it is slightly different for everybody. What I do not know, and what nobody else knows either, is how long I am going to be bed bound for? How many more times am I going to wake up hungry, and then have to wait for three hours to build up the energy to serve myself a bowl of cereal? How many James Bond films am I going to start, but not finish? I am currently on five, by the way. One would say it is a blessing I have seen them all before. (Sean Connery in short shorts). When am I going to experience thirst again? More crucially, when am I going to find the energy to wash myself. It’s been four days now and my right armpit is pungent.* Seriously.

Home is much better than the hospital. I should get that point out there right now, in case anybody was mistaken and thought I wished to return to that sterile environment. I don’t. I think that when I returned home on Friday, I imagined, actually, hoped, would be more appropriate, that the fatigue, would mean me, being a little sleepy as I made my way between the rooms on the ground floor of the house, enjoying my various box sets, whilst people did things for me. Essentially, I fancied a summer holiday, of the type where I got to watch Independence Day on repeat and get obese. The reality, is far less exciting. The reality is that I cannot look after myself. Not only that, but the reality means that I cannot really focus on anything long enough to kill some time, and I am confined, predominantly, to my bed. The family do their best to get me up and about; on Saturday this led to me having a power nap in the back garden, on Sunday, I was forced to paint a boat. On Thursday, I am forcing myself to get dressed. I was going to do this before I found out I had to go and have a blood test.

Patience would go a long way right now. I have never had any. The nice ladies with the soothing voices in Macmillan say that I lack patience because I do not like losing control. I think they are correct.

If I was not me lying in this bed with the bedsheets I do not like, I would probably offer the pathetic, bald figure who looked something like me, some advice. I would say that I only had the Melphalan three weeks ago, and the transplant was 20 days ago, the Medically Trained People say this feeling is perfectly normal and let us not forget, I did get out of hospital earlier than expected. Everything is as it is expected to be and it’ll work itself out to a point where I can bake a cake. I would also add, because this part is important, to keep my head up; medicine may advance… I am wise of course, but logic isn’t really a friend of mine right now. Logic is not going to make me better nor is it going to make me feel better. Logic is not going to change the fact that My Myeloma means that I will inevitably feel this way again at some point in my future. Put that into your smiles and mindless banter and smoke it.

The good thing about my current situation is that, in spite of my impatience led frustration, I am actually doing what I have been told to do. I have let the fatigue in. It’s in my bed with me and that is where we live. I am allowing people to look after to me and I am not getting annoyed about it. I sleep when I need to sleep, which in the words of Vivian Ward, is pretty often. That doesn’t really work because she was talking about being trapped in a tower by a wicked queen. Mamma Jones is not wicked. Myeloma is.

I believe time will heal this current wound. I just wish I knew whether it was all going to be worth it. I think I know what the answer will be, but I have to be moving around again to feel it.

EJB x

* The shower comes this evening, thank goodness. Fortunately, I have lost a lot of body hair. I have to wait for there to be other bodies in the house and I do not think the dogs count.

Tagged , , , , , , , , ,
%d bloggers like this: