Thursday evening, and the madness continues well into the night.
I find myself alone again in the large open five bed annex that has become my home for the next few days.
From the room next to me I can hear the cries and wailing from the unstable women housed within.
Having watched a movie on my DVR, (as there is no TV) I decided to try and get some sleep.
I received some more panadol from the nurse and worked out that I needed to wake at around 2am to take some more before the fever started to build. As I got myself as comfortable as one can in a hospital bed and prepared to sleep, another patient arrived. We shall call him patient A. A man in his 70's who looks to be in fairly good health and going by his conversation with the nurses, of sound mind too. (Something that you just can't take for granted in hospital).
He settled in and once again I endeavoured to go to sleep. Then at around 11pm another patient arrived and started to rather noisily unpack his belongings. This seemed to take an inordinately long time and I started to get a little peeved. Then just as the banging of draws and the rustling through bags stopped another sound started. A sort of sanding noise. I thought maybe he was cleaning something and it wouldn't take too long. But no this constant sound that reminded me of sandpaper on wood went on for over forty five minutes before finally I snapped.
Separated by just a thin curtain the noise was driving me crazy. I spoke out in a loud voice and asked if he wouldn't mind stop making that noise as it was making it difficult to sleep.
Still the noise continued without a word of acknowledgement from the patient in the next bed.
Finally I called for the nurse and asked if she could check what he was up to. "He's just un-packing his stuff" she replied. "No he's not, it sound's like Geppetto's workshop in here" I replied. "I'm expecting a small wooden boy to appears at any minute!"
The sanding noise stopped, she shrugged her shoulders and left. The scratch, scratch, scratch soon returned and was occasionally punctuated with the odd puff as he (from what I imagined) blew the sawdust from his workings.
Then as midnight approached and I contemplated a full on confrontation with Geppetto, but not really sure if I could pull it off in my weakened state, a woman vistor entered the room and proceeded to have a very loud conversation with him. Now visiting hours are strictly over at 8:30pm on this ward, so how she got in I don't know. However the sanding noise had now stopped and I found it easier to relax to the sounds of people talking than the mechanical noise of pseudo toy-making.
Then just as I was about to dose off, patient A, who had said nothing all night suddenly exploded and demanded that they shut-up and that visiting time was well and truly over.
Instantly a nurse appeared and offered us earplugs. "NO! I do not want earplugs, I want peace and quiet" demanded patient A. All went quiet and the nurse scurried away. Geppetto and his visitor reduced to barely audible whispers.
Within a minute or two a security orderly appeared and told Geppetto that he was being moved, That they had found him a room to himself. And then he was gone. I asked the nurse what it was that he was sanding, she once again shrugged, turned away closing the curtain behind her and all was peaceful.
Sleep came quickly and it was not long before I realised from within my sleep state that I was cold. It was at this point I should have woken and taken more panadol. However I was past the point of no return and my brain had come up with another plan. There were two of me, one was cold from fever and the other was just cold. It was not until both of me equalised that I was allowed to wake and obtain more medication from the nurse.
This surreal dream state went on for hours, meanwhile I was knotted in a shivering delirious ball at the bottom of my bed. Finally around 4am I broke free of my self induced madness and called the nurse. By 5am I was drenched in sweat between soaking wet sheets wondering if things could get any worse. I changed my clothes and spent the next few hours on top of my bed wondering what Geppetto had been making.. Pinocchio? a small wooden bird? or did he just have incredibly long toe nails and only a very small file? I'll guess the two of me will never know. ;)
Saturday, November 21, 2009
Thursday, November 19, 2009
Day 2 in the land of the sick and the crazy.
When I was admitted yesterday they struggled to find a free bed in the whole hospital.
Then one came free in the "short stay unit" and that is where I have been since.
Originally I was sharing a space with five other patients. All elderly men. Today they have all been discharged and I am now sitting on my bed in this large open space alone.
This area isn't really a room, it's an open space at the end of the corridor. However there are other single rooms not far from me and I'm guessing that's where the rest of the patients are. I've not really seen many on my trips to the bathroom. I have however heard one of them on a regular basis. There is a woman in a room not 5 metres from me who is clearly suffering from some sort of mental health issues. She is prone to out-bursts of hysteria, yelling and ranting complete nonsense. They have posted a security guard outside her door, I'm not sure if it's for her protection or ours.
I've seen both the Haematology and Infectious diseases teams today and both appear to be stumped. All they can do is await the blood cultures and run more tests. I did mention that I had a theory several months ago that it could have been radiation induced pneumonitis and that other doctors had discounted it especially after the bronchoscopy. However the doctor I was talking to said that it was still a possibility and that it would not necessarily have shown up on the bronchoscopy (camera inserted into lungs).
I'm a lot better today than I was yesterday. I've been allowed paracetamol to break the fever and I almost feel normal again. Yesterday I was pretty sick I can tell you!
Last night I decided to let the fever run it's course through the night. My thinking was that if I took anything for it I would soak the bed and have a miserable night between wet sheets.
The first hour I shook uncontrollably with the "chills" and then I fell asleep where upon I became delirious and had this weird recurring theme running through my sleep that somehow the number of my coughs had to add up to an even number or they would not stop. This surreal dream-state was punctuated with severe coughing fits that had me throwing up twice. Fun! Fun!
Finally around 6am the fever broke all by itself and I ended up having to get up and change my shorts and tee-shirt for dry items anyway, then return back to cold clammy wet bedclothes.
Tonight I think I'll try taking something for the fever even if it's just to avoid the crazy dreams.
Then one came free in the "short stay unit" and that is where I have been since.
Originally I was sharing a space with five other patients. All elderly men. Today they have all been discharged and I am now sitting on my bed in this large open space alone.
This area isn't really a room, it's an open space at the end of the corridor. However there are other single rooms not far from me and I'm guessing that's where the rest of the patients are. I've not really seen many on my trips to the bathroom. I have however heard one of them on a regular basis. There is a woman in a room not 5 metres from me who is clearly suffering from some sort of mental health issues. She is prone to out-bursts of hysteria, yelling and ranting complete nonsense. They have posted a security guard outside her door, I'm not sure if it's for her protection or ours.
I've seen both the Haematology and Infectious diseases teams today and both appear to be stumped. All they can do is await the blood cultures and run more tests. I did mention that I had a theory several months ago that it could have been radiation induced pneumonitis and that other doctors had discounted it especially after the bronchoscopy. However the doctor I was talking to said that it was still a possibility and that it would not necessarily have shown up on the bronchoscopy (camera inserted into lungs).
I'm a lot better today than I was yesterday. I've been allowed paracetamol to break the fever and I almost feel normal again. Yesterday I was pretty sick I can tell you!
Last night I decided to let the fever run it's course through the night. My thinking was that if I took anything for it I would soak the bed and have a miserable night between wet sheets.
The first hour I shook uncontrollably with the "chills" and then I fell asleep where upon I became delirious and had this weird recurring theme running through my sleep that somehow the number of my coughs had to add up to an even number or they would not stop. This surreal dream-state was punctuated with severe coughing fits that had me throwing up twice. Fun! Fun!
Finally around 6am the fever broke all by itself and I ended up having to get up and change my shorts and tee-shirt for dry items anyway, then return back to cold clammy wet bedclothes.
Tonight I think I'll try taking something for the fever even if it's just to avoid the crazy dreams.
Wednesday, November 18, 2009
Didn't realise how sick I am.
I've been propping myself up for months, either with prednisone or paracetamol. I knew that I was scraping the bottom of the barrel taking steroids to get me through Targa, but it was something I just had to do. However there's just nothing left in the tank right now and even breathing is difficult. I'm not kidding!
Today was the first time I've gone through a day with no medication. The doctors wanted to let my fever run so that they could get blood samples at a time they knew I was febrile.
I don't remember a time when I have been so weak. When I got here the lift was not working so I climbed the two flights of stairs to the Blood and Cancer day ward. I could hardly breath when I got there and my heart was racing at an incredible rate.
Later on I started to cough from the air-conditioning and the act of coughing left me breathless and again my heart was racing. The whole day has been like this. This is the state of my body, I've been holding back the dam with little pink and white pills for nearly six months and there's just nothing left. Right now I feel OK because they have finally given me some paracetamol to break the fever. They took three large blood samples during the day, and it is hoped that something will grow from the blood cultures. If it does we will have the reason for my fever and illness. If nothing grows or shows up in the lab tests..? Hmm I don't know where that leaves me and to be honest the doctors don't seem to know either.
Tomorrow I have an Immunologist coming to see me, hopefully he will have some ideas.
Till tomorrow...
Today was the first time I've gone through a day with no medication. The doctors wanted to let my fever run so that they could get blood samples at a time they knew I was febrile.
I don't remember a time when I have been so weak. When I got here the lift was not working so I climbed the two flights of stairs to the Blood and Cancer day ward. I could hardly breath when I got there and my heart was racing at an incredible rate.
Later on I started to cough from the air-conditioning and the act of coughing left me breathless and again my heart was racing. The whole day has been like this. This is the state of my body, I've been holding back the dam with little pink and white pills for nearly six months and there's just nothing left. Right now I feel OK because they have finally given me some paracetamol to break the fever. They took three large blood samples during the day, and it is hoped that something will grow from the blood cultures. If it does we will have the reason for my fever and illness. If nothing grows or shows up in the lab tests..? Hmm I don't know where that leaves me and to be honest the doctors don't seem to know either.
Tomorrow I have an Immunologist coming to see me, hopefully he will have some ideas.
Till tomorrow...
Tuesday, November 17, 2009
Where is Dr House when you need him ??
Well the CT scan was clear, again. This is good as it means that more and more time is passing between now and when I had my stem cell transplant. If I were to relapse, and I hope I never do, it needs to be over a year after the SCT otherwise they will not consider me for another transplant. But that's academic.. right now I have just had my third CT scan that shows no discernible activity. Fantastic!!
However that still leaves me with this cursed fever! and the doctors are completely stumped by it and have even said so. Today was the first time ever I have had the reply "I don't know" to several of my questions. After doing his usual checks of my lymph nodes and listening to my chest, the doctor seemed quite concerned at my resting heart rate which was 116. I told him that it's been like that for months. He said he was very concerned and that he would like to admit me straight away for tests and observation. I laughed and said this is how I've been for nearly six months, another couple of days wouldn't hurt, as I have my niece's wedding to attend this weekend where I am to be the Master of Ceremonies. It now looks like I won't make the wedding. :(
He said that he would rather I didn't hold off till next week but that he couldn't stop me. I realised at that point that he concidered it was serious and holding off for a week would be fool-hardy. I told him I needed to spend the afternoon clearing my week of appointments and getting ready. The plan is to have an "appointment" with him tomorrow morning and for him to decide on the spot to have me admitted through the emergency dept. There's more chance of getting a bed that way apparently.
My blood counts are OKish for me, so no concerns there, which is good. However some of my immune cells are severely depleted, possibly as a result of the poor harvest we had for the stem cell transplant. This leaves me right on the cusp of being susceptible to opportunist infection, much like an AIDS patient. (In fact a lot of my symptoms are similar to someone with HIV, however I've had many HIV tests and all have been clear). All these years of chemo have battered my immune system to the point that it's barely up to the job.
One theory which we hope to look at this week is that I do have an opportunist infection hiding somewhere and that it's just a case of finding it and administering the right drugs. That would be a good outcome. I won't hold my breath.
One thing that does point to a severely compromised immune system being the culprit is that I have now been on an anti-fungal drug for most of the year. When ever I try to ween off it I get mouth ulcers and a sore throat, a sure sign of oral thrush. Perhaps I have another fungal infection elsewhere in my body that is resistant to the drug I'm taking. Then again it could just as easily be a virus or bacterial infection.
Yeah wouldn't it be great if TVs Gregory House was a reality!
However that still leaves me with this cursed fever! and the doctors are completely stumped by it and have even said so. Today was the first time ever I have had the reply "I don't know" to several of my questions. After doing his usual checks of my lymph nodes and listening to my chest, the doctor seemed quite concerned at my resting heart rate which was 116. I told him that it's been like that for months. He said he was very concerned and that he would like to admit me straight away for tests and observation. I laughed and said this is how I've been for nearly six months, another couple of days wouldn't hurt, as I have my niece's wedding to attend this weekend where I am to be the Master of Ceremonies. It now looks like I won't make the wedding. :(
He said that he would rather I didn't hold off till next week but that he couldn't stop me. I realised at that point that he concidered it was serious and holding off for a week would be fool-hardy. I told him I needed to spend the afternoon clearing my week of appointments and getting ready. The plan is to have an "appointment" with him tomorrow morning and for him to decide on the spot to have me admitted through the emergency dept. There's more chance of getting a bed that way apparently.
My blood counts are OKish for me, so no concerns there, which is good. However some of my immune cells are severely depleted, possibly as a result of the poor harvest we had for the stem cell transplant. This leaves me right on the cusp of being susceptible to opportunist infection, much like an AIDS patient. (In fact a lot of my symptoms are similar to someone with HIV, however I've had many HIV tests and all have been clear). All these years of chemo have battered my immune system to the point that it's barely up to the job.
One theory which we hope to look at this week is that I do have an opportunist infection hiding somewhere and that it's just a case of finding it and administering the right drugs. That would be a good outcome. I won't hold my breath.
One thing that does point to a severely compromised immune system being the culprit is that I have now been on an anti-fungal drug for most of the year. When ever I try to ween off it I get mouth ulcers and a sore throat, a sure sign of oral thrush. Perhaps I have another fungal infection elsewhere in my body that is resistant to the drug I'm taking. Then again it could just as easily be a virus or bacterial infection.
Yeah wouldn't it be great if TVs Gregory House was a reality!
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