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.
Primrose Hill is in there somewhere
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