Monthly Archives: January 2013

Boney Joney

There have been few moments since I was diagnosed for me to celebrate. Diagnosis, fractures, chemotherapy, hair loss, nausea and fatigue have been my rewards thus far. Sure, I have celebrated when my paraprotein’s gone down, but with hindsight, my previous celebrations have been premature. I celebrated after the first cycle because I got a 35% reduction, but then the reductions slowed and the level plateaued. I got to have Christmas with my family because it went down by three, but the end result still means that I have to have a stem cell transplant, just three months later. In the long term, this may be to my benefit, but we do not know that yet, so I am keeping those celebratory flags in the loft for now.

On Monday however, there was need for a balloon or two, or maybe a slice of cake, for cake has more purpose than a celebratory balloon. It smells better. Getting good news is rare, so I had a day of relishing in it.

On Monday, I got my MRI results. Not the full results, I am still to do that, but I got the headlines. The hardest thing I find about living with myeloma is that in addition to the disease itself, I have the pain. Correction, ‘chronic pain’. Must not forget the Chronic Pain; it’s been my friend these eight months at least. I always think that the disease would be easier to manage if I could bend over or do a jig, but alas, myeloma does not give you the option of one or the other. I get branded by cancer and I get pain. Silly bones. Silly lesions. My Myeloma.

It’s not all doom and gloom though, for that is not how I roll. I am Glass Half Full.*

On Monday, I found out that my bones have not got any worse since my first scan in AugustYay, party. In fact, my bones have improved. Yay. PARTY. The treatment I have been on, as well as giving me a partial response has started to mend my bones. I do not know the full results, but I imagine, that there is still a long way to go, and I shall be in a relationship with morphine for a while longer. But if it stays the same, I can manage it. I have got this far.

As annoying as the bones are, knowing that they are improving offers me an immeasurable amount of relief. I live in a constant state of paranoia that every turn of the head, every click of my neck, every digging pain in my lower back, is a step closer to paralysis or a sign that It is getting worse and the Medically Trained People have missed something. Knowing it is getting better, at whatever speed it is getting better, makes me feel better.

My results buy me some peace of mind.

My results, as silly as it sounds, lets me focus more clearly on the next hurdle, on my transplant.

Thank swear words for that.

EJB x

* Excludes drug enhanced mood swings, premenstrual tension, tiredness and hunger.

Tagged , , , , ,

Hangover

What is this feeling so sudden and new?

My head is fuzzy, my body is aching, my reactions are slow and my bowels are loose… I have a hangover.

My old friend and I are reunited. Reunited in loathing.

I feel ill because of something I have done. I feel ill because I drank too many Kronenbergs. I feel ill and the cause is not My Myeloma. It is predictable and familiar. I am so proud of myself.

Obviously, I did not reach my drinking tally of old, that would be next to impossible for somebody in my delicate condition and not sensible. But, I had enough to make my room smell like rotten cabbage when I woke up this morning. I had enough to round off my evening with some egg fried rice from The Golden Bowl, in my bed. I had enough to have fun.

My pleasure at being able to stay out long enough to get a hangover, makes this hangover one to treasure. I earned it.

Oh, and Happy Birthday to Middlesborough. She is the reason I have a hangover today.

Tagged , , ,

School Holidays 🎨✏

I like a routine. Correction, I need a routine.

Working a nine-to-five provides a routine. PADIMAC provided a routine. Doing nothing does not a routine make. In the last fortnight, worsened by the snow, I have found myself with no routine at all. I do not need to be dressed and ready to leave the flat by nine. I do not need to leave the flat at all. It’s essentially the school holidays.

Everyday I tell myself that I am going to get out of bed as soon Housemate wakes me up in the morning. In reality, I get out of bed four hours later. This sleeping schedule means that I get up and dressed around 13:00hrs and wait for people to come and visit me in the evening. I am doing things in the afternoon, but to suggest that there is any kind of structure to my day would be a big fat lie. The day sleeping means that I then do not get to sleep until 01:00hrs in the morning, when I drift off whilst watching a BBC period drama.

The problem with this routine is that when I actually have to do something, like get up and go to work, I sleep in.

Now, I believe at the age of 28, my behaviour is excused because I have Cancer. Cancer actually covers a multitude of sins. Try it out sometime.

My friend GKD says I should embrace it, for there are not many times in an adult’s life when they are allowed to live like a slob. Periodic bouts of slobbery are indeed fun. Weekly bouts? I have my doubts.

Part of me wants to embrace it. I really do love my bed. I can excuse the all day bed fests when I feel sick and weak. I do not feel sick and weak, and this is a problem. I could turn the flat into a bakery/tailors, but there isn’t the space and I really do need to stop eating butter. I do work, but my office is my bed.

I suppose that this limbo is designed for rest. Resting my body, which I do need to embrace…. I just wish that all my friends could too, so it could actually be the school holidays

Tagged , , , ,

Thaw

When one is younger, they are excited about the bright glow that greats them on a morning after it has snowed the night before. Not me, today, I was excited by the grey, damp day which greeted me this morning. I was excited by the dullness of British weather because I knew that this meant one thing and one thing only, Freedom.

The snow and the ice has melted (nearly), leaving in its wake, dampness and puddles. It is difficult to slip on these things.

After four days in the flat, I left last night to go to the cinema, informing the taxi driver that he had to pull up right to the curb. Safety first.It was bliss. If I lived on a busy street, I probably could have left sooner. Today, I was able to walk to the shops. Everywhere looked dirty in the post snow carnage. That was bliss too.

I am quite relieved. Hopefully, the snow will stay away forever and ever and ever. Or at least until my bones are a little bit better.

Tagged , , , , , ,

Naked!

I was once shy.

I should clarfify this point, because I imagine those of you who know me and are reading this, would disagree that I have ever been ‘shy’. I was incredibly shy about all issues relating to my body.* My body is fat, hairy, covered in old stretch marks and don’t even get me started on my breasts. I have been in constant battle with my body image my entire adult life, strongly influenced by the kind boys at school, who used to call me ‘pork chop’ or made me put a pencil under my boob to see if it passed the droopy test (I didn’t). In short, there has been a distinct lack of self confidence.

And then on 14 August, all that changed. I was diagnosed with multiple myeloma and I was in a hospital. On my first night in hospital, I had to have an ECG. By the time they came round to do my ECG, something I had only heard about before on ER, I was in my pyjamas and hooked up to fluids via a cannula. That ECG was a quick introduction to hospital life and a lesson of how your body parts are not primarily sexual objects. During the ECG I asked if I could keep my bra on, the male nursing assistant said yes, which I was incredibly relieved about. I did not want to whip my baps out to a complete stranger. It transpired however, that I could not have my ECG with my bra on, nor my top. I slowly, degradingly, had to remove my clothes, where at the end of it, my right boob was flopping out and my t-shirt was over my head, with my body covered in stickers. I remember crying during the whole thing.

As my thirteen night stay progressed, I had to be washed by mother, have my legs shaved by my sister, had an Echo, got stuck on a commode and whilst under general anaesthetic, somebody, I assume a Medically Trained Person, inserted a catheter up my whatssit.

All false shame I had about my body, disappeared. It had to.

I did not realise just how much it had disappeared until I had the ECG last week. When I was asked to remove all clothes on my top half, there were no feelings of modesty or apprehension, I just took off my jumper, shirt and bra and let my two little friends hang right out. I suspected a change when I was at Mamma Jones’ house for Christmas. I would allow the females in my family to see me in a state of undress and think nothing of it, something I know I would not have done before. I do not come from a naked household. On more than one occasion, I failed to shut the bathroom door.

I have been liberated.

I am not quite so liberated in the flat, because I am a considerate person. I acknowledge that it would not be fair for Housemate; I don’t think he needs the image of my naked form in his head all day long. Although I am liberated, I am aware that my form is not for everyone, and you know, there is something called decorum. That said, I do occasionally get changed with my door open. I just forget. Sometimes, I let my boobies hang loose under my pjs whilst making a cup of tea. Other times, I use my arm as a shelf, depending on who is in the house. Thoughtful.

I guess, when you have to routinely talk about your bits and pieces, and show them, all embarrassment disappears. If I continued to be embarrassed, I could only imagine how worked up I would get, and I have more important things to fret over. When everyday is a battle to survive, what your body looks like, shouldn’t and doesn’t matter anymore.**

To be clear, I am not yet a nudist, and I do not think I will ever be the person who walks around the swimming pool changing room with their lady garden on show, but I do hope, that My Myeloma has enabled me to be more comfortable in my own skin. As bumpy and lumpy, with a texture of orange peel as it is, my body is battling something horrific and if it succeeds, I do not think that is something to be ashamed of anymore.

It does not hurt to try and see the positive side of My Myeloma, and this new found acceptance of my physical appearance is evidence of that.

Embrace it.

20130123-135420.jpg

20130123-135432.jpg

EJB x

* Toilet talk with certain friends and Big Sister is an exception to this rule. Poo has always been fun.

** I am full of contradictions. I will probably have to remind myself of this when it comes to the big head shaving.

Tagged , , , , ,

Snow ⛄❄

Once upon a time, I used to love the snow. I do not love it anymore.

The current nationwide obsession with the weather is clearly an overreaction. It may be below zero, but this is not an Apocalypse. For me, and this may also be an overreaction, the snow represents incarceration. I am a prisoner to the snow and this is partly due to me being sensible and partly because I am scared of it.

My mood up until Friday was pleasant. I was not thinking about My Myeloma, or my treatment, I was just getting on with things, and when the snow started, it put a dampener on all of that. I have not left my flat since Friday, and to be honest, I have barely left my bed. I knew the snow was coming, every media outlet told me so, and I prepared for it. I panic bought and my flat is full of activities to keep me occupied. I have not done anything. I do not have the inclination to do anything and that is the snow induced depression talking. I have had days where I have stayed in the flat for longer than this, but that is not when I have felt this well. I feel reasonably healthy right now, and that is making this prison so much worse. My addiction to social networking is also making it worse. I see images of people having fun in the snow. In my pre-myeloma days I would have been one of those people. I would be making snow angels or taking a walk with my wellies on listening to the powder break beneath my feet with my imaginary boyfriend or A Twin, but I cannot do that now. I cannot pop into the pub after a winter walk to warm up, because I cannot go for a walk. I promised people I wouldn’t.

My experience of the snow amounts to this:

20130120-211321.jpg

20130120-211314.jpg

20130120-211327.jpg

20130120-211308.jpg

On Friday, my wonderful break was interrupted by having to go to the hospital, which obviously reminded me of the fact that I have cancer. By the time I was at the hospital, I did not need to be reminded, the fear I had leaving my front door and getting into the ambulance was enough. A normal person could slip on the ice and break a bone. I do not know what damage I could cause to myself and this is constantly in the back of my mind and the reason I am still in my house. Such was my concern about the outdoors that I considered not going to a dinner in the evening because I did not want to chance a fall. Instead, with agreement with my friends, we settled on me walking slowly, accompanied. I had to be accompanied like a child. The whole affair made me feel like a pathetic little child, who is afraid of the snow. It was then that I decided I would keep my promise and not go out again.

If the snow was not enough to send my mood south, I had the hospital appointments with the inevitable waiting and anxiety, and the dinner. Not through anything my friends did, but more because I felt like I could not offer anything to the conversations. Try as I might, My Myeloma has changed me. Anything new from me is related to My Myeloma and this is not what people want to hear on a Friday night. It is important to me, and the things that can impact upon it. When one of my friends told me in jest that me talking about the weather was boring, I do not think she understood just how much this weather is creating a storm in my life and thus, how much it means to me. I talk and I think about it, because it stops me from doing things that I used to take for granted. I long for the day when the matter of boys and going out are at the forefront of my mind, but on Friday, it was clear to me that they are not and I do not know when they will be again. I cannot expect others to feel the gravity of my situation like I do. Others cannot understand how a comment or conversation would upset me, when I hardly know it myself, plus my sensitivities change daily. I am an emotional roller coaster. I am my own Nemesis. Since my diagnosis, the hardest thing to get my head round is realising that everybody else’s life goes on, even though mine does not.

I have spent most of the last 48 hours thinking about how boring I am and the paranoia has been in free flow. I cannot help but think that I am dull. At least the tears were hidden on Friday. If I cannot have fun with my friends, who can I have fun with?

I am frustrated because my imprisonment may appear like an over the top reaction, much like this spiral I have found myself on, but the stakes of me leaving the comfort of my flat are high.

It is what it is however and I have to deal with it, I just wish that I could do so without feeling sorry for myself. It’ll get better, starting around…. Now.

I blame the snow. It’s all the snows fault.

Bring on the rain please. β˜”β˜”β˜”β˜€β˜”β˜”β˜”

Tagged , , , , , ,

Testing

Friday, was a Test Day. For the first time in what seemed like a long time, I made my way to UCLH and let people prod me.

The first test of the day, and one that came later than scheduled due to the snow, was the much anticipated MRI scan. In the week leading to my scan, I had managed to get myself into quite a panic, based on the fact that my first MRI scan was so horrible. I did not think that I was capable of enduring the same level of pain. The second test was a straight forward ECG. The only challenge I anticipated with that one was the walk in the snow from the Macmillan Cancer Centre to the main hospital.

Last week, I had been going back and forth in my mind whether to do the deed with the aid of drugs or without it. I went as far as requesting the drugs, but then within a few hours, I had changed my mind again. Cancer related issues really are magnified. My Big Sister rightly pointed out that if I did take breakthrough pain medication for my scan, I would always wonder whether I could do it without. So, like removing a plaster, I opted for no drugs. It would appear that I like a challenge. I chose wisely.

Once I had managed to actually get to the hospital, after a wait of two hours, I selected the really cool and edgy tunes I was going to listen to in the coffin, before stripping. Despite having to have worn quite a few now, I still find it marginally exciting when I have to put on a hospital gown. I personally think they are beyond sexy. Nothing says attractive like a patterned gown covered in stains that opens down the back to reveal ones cellulite and lace knickers. The fact I was wearing them, was not a coincidence.

Some of you may not know what an MRI scan is. I am still not sure what sort of imagining it provides, but I do know that you have to fill out and sign a questionnaire to confirm that you are not pregnant and that you have not swallowed anything metal, there are more questions, but you get the gist. I also removed all my jewellery, just in case it is cheaper than I believe it to be. My friend asked me last week whether it is the machine that looks like a donut. I responded with a “no, that’s more like a CT scan”, but as it turned out, my memory of what an MRI scanner was like, was thankfully, flawed. There was literally light at the end of the tunnel. The machine before me eyes on Friday, did indeed look like a donut. An incredibly dense. I swear the first machine, did not have a hole at both ends, like this one. The room also seemed brighter, perhaps that is because I was not on any medication and thus, I was not as high as a kite.

20130120-144330.jpg
Artist’s impression

Nervous, I got on the slab and was relieved to feel foam and not metal. I informed the technicians of my album of choice and that I may have difficulty getting up at the end. They put the panic button in my hand and the headphones on my ears and in I went. It was much better than last time, instead of resembling a coffin, I saw The Light. It was beyond bright in there. The Greatest Hits: Volume 1 by Queen attempted to drown out the noise, but failed miserably. At least it made the 40 minutes pass quickly enough. There is nothing like listening to ‘Another One Bites The Dust’, while being greeted by a bright light and loud banging, to make you think about the meaning of life.

Halfway through the scan, I realised that I would be able to get up at the end by myself, and that I did without the aid of the two people (one had changed to a man, I believe to help with my weight). I was more than pleased with myself that I could do it and I braved the situation without the aid of Oramorph. Now, I have to blank out what the test will find, because it would be just my luck, if it picked up a tumour…

After that, I collected my drugs, after a half hour delay due to a clerical error and walked the short distance to the main hospital. It turns out that that was the scariest point of my day. I am not a fan of the snow. I hate My Myeloma for that.

The ECG was better than my first ECG which was a firm reality check on my first night at UCLH back in August. That test involved a lot of palaver with my pyjamas, bra and boobies, that my pride would not want to see repeated. My first impression on Friday, was that the lady taking the test did not have a considerable amount of job satisfaction. She was, actually, down right rude. “Naked from the top half please”, was her greeting. I complied with her request and hopped onto the bed. She told me off twice for not relaxing my shoulders, and then put the stickers on my naked torso with a fair amount of force. I asked her if she could not press onto my ribs quite so strongly because of the fractures and her response to that was to tut. Her care was amazing. Perhaps she had see me eat a Twix, okay two, whilst I was waiting and that sort of gluttony is frowned upon in Cardiology Outpatients. Once the test was done, she said “your nurse will get the results”, and with that she walked out the cubical into the next one and said the same things all over again. I must say that my favourite part of my ECG was when she picked up my left boob to put a sticker underneath it. That’s right, I said picked up. They are that saggy. In case you were wondering what an ECG looks like, I took a photo. It is a heart test.

20130120-165749.jpg

And then I went home and reminded myself that tests are so much easier than treatment. It’s just my overreactive brain that makes them worse.

Tagged , , , , , , , , ,

Randy

I believe there comes a point in all cancer patients’ journey when they begin to have urges. Adult urges. Maybe not all cancer patients, perhaps just the ones who are of the age and not yet terminal. Maybe when it is terminal you still get the urge, I do not know that yet. If one was to get the urge then, perhaps they would be up for trying a whole range of exciting things and experiences like, spooning. I suspect that in most cases, a break in treatment and an absence of drugs, is to blame for a reignited, erm… energy.

When such a circumstance arises, I do not think there is much an unattached myeloma patient can do about it. If you take away the issue of a lack of partner, even if the patient feels well, they still have the bone lesions to deal with. I read an article yesterday about a woman who became paralysed by a sneeze. Imagine the danger a little bit of bump’n’grind would put said patient in, or indeed, an unexpected release of pleasure. I suppose then, one can bring a whole new meaning to safe and follow the Macmillan guidance and stroke. (Light reading https://ejbones.wordpress.com/2012/11/29/sex-educatiaon/)

What is needed then, in this hypothetical situation is a Booty Hug, not a Booty Call, a Booty Hug. A term I was introduced to by a complete random last Sunday. A willing participant, who is content with a hug and no exchange of bodily fluids. Basically, a willing participant up for disappointment. Maybe literally.

Where does one find one? I suppose for some myeloma patients, if you have your heart set on a specifically individual out of your reach, like somebody in space, you are setting yourself up for failure and unnecessary torment. Escaping from this, I presume, would be quite difficult when you are housebound and the only new people you meet are Medically Trained People with a code of practise.

That’s it then. There is only one way to release this energy. By yourself. Stroking.

I am just so relieved that I have yet to find myself in this situation.

Tagged , ,

Tit For Tat

I am becoming rather fond of my current limbo. It would be even better if there was no paraprotein inside me, but alas, it is there and I must move on… I have enjoyed myself more in the last week than I have in any other week since my diagnosis. I can certainly feel the lack of drugs in my system in the snippets of normality that this giving me.

I would tell you every individual thing I have done this last week, but I am not inclined to do so. I can tell you that I have been to a cinema, a theatre, an exhibition in an actually museum, work, a pub and I have travelled on the tube. If I told you more, it would make you jealous and long to be living my life, so it is only fair of me not to do that. Needless to say that I am more than happy that on more than one occasion this week, I have left my flat for more than five hours for something that is not myeloma related.

It feels like a return. A temporary return, but a return nonetheless.

I can feel my brain function slowly increasing, with the things that have been lying dormant slowly waking up again. You only need to see how excited I got about my work’s staff survey results or listen to my internal monologue about the wonder of Alfred Hitchcock, to see that this is true.

I had the occasional week off during PADIMAC, six to be precise, and during these times, I thought that I felt ‘normal’. I now know that I did not, I just felt marginally better. Maybe I did feel normal, it’s just that a week is not long enough. For as much fun as I am having, each day or if I am lucky two days of fun are punctuated by a day of rest. Like my paraprotein level, this too is unfortunate. My body pays me back for having fun, by sucking out my energy whilst I am sleeping, thus preventing me from getting out of bed when I wake the following day. I cannot escape from this.

At this moment in time, during my limbo, I cannot long for anymore than what I am getting. I know that in two months time, I won’t be able to do very much at all, and I can use this time to remember that there will be light at the end of the next tunnel.

A little bit of retribution from my body three days a week, compared to everything I have managed thus far, I can handle. This break is my long awaited holiday.

How ever short this period may be, it is the first time in a long time where My Myeloma has not been at the forefront of my mind, and that is really, nice.

EJB x

P.S. If I have said it once, I will say it a thousand times. I will forever be amazed by the fact that the drugs the Medically Trained People administer to make you feel better, actually make you feel worse. Maybe that is payback too, to make you remember your luck. Luck that when you get sick, there are people trained to make you better. Now, if only one of those people could find a cure…

Tagged , , , , , , , ,

Working With The Man

What is this? I have a laptop bag, a Tupperware full of soup, a lanyard in my handbag, I looked out my clothes last night, there is a meeting in my calendar and I am two hours later than I intended… I must be going to work today.

20130114-103834.jpg
Lustful excitement

Tagged , , , ,
%d bloggers like this: