Tag Archives: prison

The Cell

Since I was diagnosed, I have frequently complained about feeling trapped by My Myeloma. I have likened my flat and my body to prisons, because of the limitations and loss I associate with them. Saying that, I have never spent seven days in my bedroom and my bedroom alone. My transplant allowed me to experience that. Pure isolation. Life in a gaol. Seven whole days in one 3 x 3 metre room, without stepping foot outside the door; I didn’t even open it. I entered my current cell, Room 7, on Monday 22 July at approximately midday and I did not leave that room, via the double door protection, until Monday 29 July, when I left for less than hour to have a cup of tea. I returned there and here I still remain, although, I was able to leave it again yesterday to shock people with my hairstyle on the ground floor. The corridor really is a magical place. It’s basically Disneyland for me, full of excitement and discoveries.

I have spent a long time, an age it seems, unable to fathom what the temperature is like on the street outside. Is it hot? Is it cold? No idea. I am on the Thirteenth floor in an air conditioned abyss, oblivious to the outside world, bar for the faint him of traffic.

In the deepest darkest pit of transplant illness, I did not care that I had not left the room, the thought did not even occur to me and if it did, I did not perceive it to be a negative. I may have got slightly frustrated by the noises outside my doors and wondered what the hell was going on, but I was too ill to care. With regards to me room, my main concern was whether I had the time and physical capability to navigate my way out of the lefthand side of my bed with my bag of fluids, to the toilet on the righthand side without bashing the big blue share in the righthand corner of get trapped in the base of the blood pressure machine at the top right of my bed. I would also have to target myself through the door, which for some reason, opens out wards, which is not entirely practical, when the movement of a being, also includes a trolley and wires.

By the weekend, I may have been getting slightly bored of the view from my bed, and the multiple notices on how to wash hands correctly, so I made Big Sister personalise my notice board. Personalise she did, but there was no escaping how clinical this room is and how it is not my own space.

As I started to become stronger, the smaller my room feels. It has become claustrophobic and the walls appear to be creeping in by the second. The problem is, now, I cannot help but notice how many people come in during the course of the day. Some knock, some don’t. It seems constant. Don’t get me wrong, I am most grateful that I have a private room and I am definitely appreciative of the attentive Angels, I just want more space. I want a different room.

Room 7 is blue. Several shades of blue in fact. Perhaps it is to match the nurses’ outfits. It is clean. Very clean. The room comes fully equipped with a hospital issue television (£7.50 for the day or £40 for 10 days, bargain), a refrigerator, a bed, a sofa bed, a chair, a sink, a toilet and shower, six signs telling me how to wash my hands, a table, an alarm or three, a whiteboard and thankfully, a view. A very nice, sanity saving, view to be sure.

As much as I hate this room now, I know it has serves me well. It has served me very well. It did not get mad with me when I defecated on the bed, nor did it smell. The room kept me safe and cool during this heatwave, which is good really, because I did not bring a razor to shave my legs. I didn’t think I needed to. I was wrong.

And so, I give you Room 7, all 216 hours of it. It’s a bit monotonous.

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Medical stuff

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The bog

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View from a bed

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Primrose Hill is in there somewhere

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I cannot wait to see my second bedroom tomorrow. The bed may not be connected to mains electricity, but I do not care. Bring on the double. My arse needs it. I also need a widescreen television, my life of relative privilege demands it. I really cannot manage these portable viewing platforms…

EJB x

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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:

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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. ☔☔☔☀☔☔☔

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