Tag Archives: ambulatory care

Admittance Part II

It turns out that sleep is not coming easily to me today and my oramorph is wearing off, so I thought I would use this morning’s annoying twilight efficiently, and fill in some gaps. Actually, they are not really gaps, it is just an excuse to show a photograph of myself that is so hideous it looks warranted mugshot, after a drug fuelled crime spree and orgy.

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Such was my fever when I arrived at the hospital, that my clothes were drenched. I was actually thankful for the hospital gown. It was embarrassing when I first met people, I was convinced the the people waiting patiently in reception, looked at me and thought, why does that stereotypical obese person get to push in? It’s probably why I opted to walk it instead of an ambulance.

I felt somewhat stupid on our arrival, that although I was in a lot of pain, my temperature had gone down to 37. When I heard that, I thought that the Medically Trained People there and the haematologists were going to think I was a complaining weakling, who could not handle a teeny bit of diarrhoea. It was a thought that has been following me, how bad, was bad enough? Is it really that bad if I can take photographs?

Fortunately, or actually unfortunately, the extent of my stomach cramps was clear on my face, my bloods showed that in the time it had taken for me to leave the clinic earlier in the day and then, I had actually become neutropenic sepsis. So, I was not making it up. Phew. A second temperature reading had it near to what I made it at 38.2.

I managed to get some witty banter in during my examination, my so called graphic measurement of the number of wipes required to describe stool consistency is an example of why I am an exemplary patient. Despite, trying to win the staff over, I still feel like I could have gone through the night, not required special treatment in A&E and been able to walk into the Haematology department this morning. Less fuss, less dramatic.

As much as I would like my treatment in the NHS to only be undertaken by haematology or oncology nurses, I must admit that the nurse who treated me in A&E went above what I would expect. Perhaps she was just thankful that I got her out of cleaning up somebody else’s poo, but either way, she made sure I was as isolated as I could be, and when there were no porters, she escorted me myself, even after she had handed me over. That’s nice.

And then I went down memory lane to the Acute Medicine Unit, where the room alone is making me itchy, and they cannot locate a second pillow. I don’t ask for much really, I am neutropenic and I have lytic lesions. These things have to be considered by the staff in this faceless ward I am in.

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Now, if I could only just be sick, I would be very much obliged.

EJB x

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Community

Today, I find myself in Ambulatory Care for longer than I anticipated because the nurse has decided to give me some fluids whilst I wait to see the on call doctor. I thought I would be in here for 30 minutes maximum today. I was wrong.

The other people sitting with me, did not think like me when they walked from the Cottam Rooms this morning. They came prepared for the long haul. Everybody makes polite conversation in here, even if it is just a smile. I look at all the other patients and think, we’re in this together, but I am more important. It creates a nice sense of community to be sure.

I have said this to the Medically Trained People, so I have no problem with saying it here, the communal space of Ambulatory Care could be larger. In fact, I would go as far as saying it is cramped. I could touch the man to my left and I do think he would appreciate it because he is sleeping.

As I sit here, on a chair opposite the nurses station and to the right of the little reception desk, I am in the company of four other patients, all men, all older than me. We are close enough for me to hear their date of births, and I can confirm that the person nearest to me in age is 14 years older.

I recognise all the people from the hotel. The one I know the best, because he is the chattiest, is to me right on his mobile phone. I do not know why, but he reminds me of Roald Dahl, is it because his standard uniform is of somebody about to go on a modern safari? He might me South African. He is not having a transplant, I am not sure what he is in for, but he seems to be holding up much better than me. He ate at Wahaca yesterday, it’s not proper Mexican food you understand but it is an acceptable European fusion. He’s playing on his MacBook. He likes to Skype his wife, apparently. As well as reminding me of Roald Dahl, looking at him makes me want to watch the first three Indiana Jones movies.

So Roald Dahl/looks incredibly like a photograph I once saw of my great grandpa, is sitting closest to the entrance. He is getting a bag of something the size of a cows udder.

To the left of me, essentially next to me, is a trendy man in his forties. I saw he is trendy because of the people I have seen him with. One of them wore tights and Dr Marten’s on Wednesday and is a fan of bleached denim. Crazy. Today, he is wearing black jeans and a navy jumper. He’s very tired. I know that because I heard him telling the nurse he was and he is asleep as I type. He does not want to go into the hospital yet… I get the impression he has been here before. He knows all about my stools because the open plan setting does not offer enough privacy for me to have had that conversation privately. Not that I care. They offered me a private room; I declined.

He might not be asleep actually, he could just be pretending because I just saw his left leg move. To be honest, if I had to have had the conversation with the camo shorts with a red flannel shirt wearing man to the left of him about IT sales, I would have pretended to sleep. After 5 minutes of listening to their convention, I had to reach for my earphones. Poor man.

The boring man, sitting in the corner, is about to leave. His wife has been sitting with him the whole time and has not said a word the entire time I have been here. Maybe she doesn’t like IT sales. Hang on, she just said thank you to the nurse. They are off. His feet are swollen I note, so it is good he just walked over to the bin and disposed of his Lucozade bottle. As they walked out, a guest belonging to the sleeping man arrived. It turns out, he was actually asleep. She has lovely hair. She looks sad. I guess she is sad, because I saw the man on Tuesday for the first time and I can tell he looks worse than he did then. For ‘Lolita’ reading girl with the nice hair, the visible deterioration must be difficult.

The man who was in the far corner, also with a wife, has also left. He did not smile. I suppose one could say, if you are stuck in a artificially lit, white room on a Sunday, you probably do not have that much to smile about. I do not think like that of course. I am peaches and light. He looked like he was wearing a dressing gown, but it was actually an open blue shirt.

There are 3 nurses in here today, treating us and a further person in one of the private rooms. The room seems cluttered. I do tend to see more clutter when I am tired. There are silver trollies and stools as far as the eye can see, a blood pressure machine in the middle of the floor, and as the three of us left in here are on IV meds, we’re attached to those things on wheels, which are taking up more room as they sit to the left of our chairs.

Why am I the only one who enjoys the reclining facilities on the chairs? Fools.

Roald Dahl has opted to eat lunch. I was going to try it, but realised that I did not want my one meal of the day to smell like baby’s sick. I consequentially feel sick. It is just the two of us now…

I have to go and give them a certain type of sample now, I hope it does not put him off his lunch.

I’ll try and be subtle.

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Anticipation 😳😁😷

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

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The Cottam Room

After a period of mysterious wonder, yesterday afternoon, I was finally able to discover what The Cotton Rooms, the hotel, is like. I can say, that it is much better than I thought it would be. Fancy. According to the Receptionist, the hotel or, as I like to view it, the half way house, is to the standard of a four star hotel. I believe it is indeed a four star hotel, the only difference is that it is full of sick people and their carers, with an essence of community spirit, and it is all free. Everything is free. Free, free, free. Thanks NHS. The care you provide is just marvellous.

x

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Sweaty, obese cancer chic

When Big Sister and I walked into the small lobby yesterday, we were quite impressed. I am positive, absolutely positive that my first impression was heavily influenced by the air conditioning. I bloody love air conditioning, especially when it is 30 degrees outside, and every crevice is leaking.

We checked in and received a royal tour and escort to our room. This place is equipped with a lounge, dining room with two microwaves, laundry services and air conditioning. Did I mention the air conditioning? Myeloma is a small price to pay for comfort in this heat. Our room was huge, with a delightful view of the BT Tower. Unfortunately for me, it was the only room, where the AC had decided not to work. It was warmer in there, than the outside world and I made the rather unpleasant mistake of sitting on one of the leather chairs. You can imagine what happened when I stood up…. I hope they have disinfectant. And so, after a few visits from the handyman, we were transferred to another room. Essentially we were downgraded to a room half the size overlooking the Macmillan Cancer Centre. It had to be done; there was no other option. I do not think a body would want to stay in a fifth floor room, in central London where you cannot open any windows, with no air conditioning, let alone a person gong through the fake menopause. I need cool air, I’m a big girl after all.

The rooms themselves have everything a gal could want. I have wifi. Yes. I have a DVD player to go with my big TV. Yes. I have a fridge. Yes. And finally, a safety deposit box for EMan. Yes, Yes.

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The breakfast isn’t bad either. Big Sister was most impressed by the fact she got a full English as well as me. I think she was less impressed by my insomnia, nor me waking her at 06:30hrs in a panic because I thought she was dead. Thank goodness we have separate beds. I wonder how Mamma Jones will fair this evening, will she appreciate the Piano soundtrack at 01:00hrs?

I am still cannot see how my transfer will work, and not knowing when it will happen makes more difficult to comprehend. How much do I unpack? How will I get to the hospital? Might I actually have to call an ambulance? Nobody knows. As nobody knows, I am just going to try to go with the flow.

It may be nice, but there will always be one place I would prefer to be. Soon, soon.

EJB x

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