I am currently in a state of unknown. I am waiting for something that is going to happen, but I am yet to fully comprehend what that something is.
I have had my transplant. That part is done, and now, I have to sit around waiting to be neutropenic or waiting to get an infection, which ever comes first, the chicken or the egg. All I know is that something will require my admittance to the hospital. It is quite a frustrating place to be in. Part of me is enjoying the Ambulatory Care set up, which involves me staying in the hotel and walking back and forth to the clinic once a day, until the day arrives when I am no longer able to walk. It means that I can walk around and have some sort of independence, before I have none and I am confined to my hospital room. The part of Ambulatory Care that I do not like, is despite the freedoms it appears to offer me, I feel trapped in them.
I do not know when I am going to go downhill, and could my downhill manifest itself as quickly as the click of a switch? How far can I go before it becomes to bad? Should I be walking the streets? I always complain about the extreme temperatures, but the current climate mixed with my current meds, further restricts what I am able to do. Should I actually be gallivanting down to Oxford Street as the nurse suggested on Tuesday or should I be chilling on my bed in the hotel room with the curtains closed in an air conditioned abyss?
I know that I would complain if I was already trapped in the hospital, and I am fortunate that my hospital gives me the choice, but I just wish I knew when it was going to happen. If I knew the magic answer, I would know whether I can go to Shaftesbury Avenue for dinner or pop to a museum. I would also know whether I needed to wash my day clothes or not because I only bought enough for four days. Waiting, and the anticipation of something that is not going embody fun, makes everything seem longer some how.
The unknown…
I am doing what I can, I am monitoring my body and feeding back to the Medically Trained People. Yesterday’s bloods were fine, although my renal function had deteriorated slightly, which may be contributing to my current, permanent hangover, or for everybody else, dehydration. I am also retaining water, which means that I am bulking up, especially on my fingers. They are like big fat sausages. Then you get onto the discussion of how much I am drinking and how much I am peeing. A lot and enough, by the way. I am constipated (suppository not permitted) and a little spaced out. My current side effects are not fun, but they are manageable. What is going to happen next?
The unknown…
Not knowing when I am going in, is getting my head into a pickle on the practical side of things too. If they decide to admit me from the clinic, it is straight forward and I will be escorted across by a member of staff. If I deteriorate out of hours, I may have to be admitted via A&E in an ambulance, as they only reserve one Ambi bed a night. Many people will not be familiar with the layout of my hospital, but the A&E is a five minute walk (or less) from the hotel. The notion is ridiculous. It is a waste of money, but for the Medically Trained People to suggest it, what do they think will happen? I was given a contact number, but I was told that I may also have to call 999.
The unknown… It really is quite confusing, frustrating and damn right hard to manage.
Anyway, I am the queen bee of patience. I have not complained once today about any of this. Not once. Not at all. Not never. I am a brave little soldier after all. I am trying to take it on my hairy chin.
EJB x
