Hospital world... (part five)

So there I was laying in my bed, in a new ward and in a room with only one other patient. It looked like we shared the same nurse and she was there when I arrived. She was busy running around putting things away and making sure that this tube was in the right hole and that dressing material was where it belonged. She was paying a lot of attention to the man in the other bed. I assumed that he had only arrived a bit earlier from just having his operation as our nurse kept asking him if he needed anything, how was his pain, and did he need anything right at the moment and so on. I tried to get her attention on several occasions and it was almost as if I was annoying her. She would occasionally acknowledged me and would tell me that she would be with me in a minute. I didn't really understand what was so difficult. The man she was tending to was in no apparent distress. I mean all she was doing was helping position him in his bed so he could watch telly, putting his things away and cleaning up around his bed. So I just didn't understand why she couldn't take just a second to ask me what it was I needed. It wasn't as if I was trying to ask her to re-do my surgery. I just needed a urine bottle so I could stand next to my bed and do what nature intended me to do in the bathroom but instead I had to do it next to the bed because of the surgery and hence the need for the bottle. Nothing, more nothing less.

I was a bit troubled to think that maybe my nurse was incapable of doing two things at once but maybe it was the morphine speaking and maybe I was just being a tad unfair since I had only just met her. Believe me I have huge amounts of empathy for what nurses do day in and day out because my hubby does it and he does it with the added stresses of doing it in the Emergency Room. I understand when someone is involved in something extremely difficult and they can't be disturbed when their are doing say "brain surgery" but I really don't equate what our nurse was doing with brain surgery. The way I saw it and the way 99.9% of the population would have seen it was that all she was doing was settling two new patients into their respective beds and making sure that they were as comfortable as possible before she headed out to check on her other patients. I also want to be fair and say that I was not privy to the entire picture and there may have been something extraordinarily special about the man in the bed across from me and it was quite possible that he had special needs but if that were the case then she should have gotten some help to attend to all of her duties. A few days later I would come to realise that I really did not need nor want to have her attention but I am getting a head of myself.

I had been told by the surgeon that I was allowed to walk to the bathroom if I needed to use it but it would be better to use the bottle as much as I could to save the wear and tear on my back. I was a bit disoriented being in a new room and I didn't know where the bathroom was but If I had known where it was I would have just gotten up and headed over to it to take care of business instead of asking for a bottle. Once I was able to take care of business one way or the other I would be able to lie back down, push the pain medicine button and go to sleep. I finally got the nurses full and undivided attention and of course the first thing I asked for was a bottle. She got me the requested bottle and as she started to leave to allow me to attend to my business I asked her if she would please draw the curtains around my bed so I could have some privacy. She turned around and said to me "You're in a hospital and once you enter these doors all of that type of privacy goes away. So it's best you get used to it " and she proceeded to walk away. I was to tired to say anything. I had just had surgery on my back, I was in pain and I had to pee like there was no tomorrow. So I used that bottle right there in front of everyone and anyone that might come into the room or pass by the door, which was an issue because I had the bed facing the door, but it would be the last time I did so without the privacy of a curtain. That little incident set the tone of what was to be my next three and a half days of sure hell.

This nurse turned out to be an absolute nut job. She had personal conversations with me of a nature that were totally inappropriate. Conversations like she was in love with my doctor and his wife is hot too. She talked about the drunk old lady that lived above her and that all she really wanted was for the old lady to die so she could buy her apartment. She said she had only recently been assigned to this ward but already she knew that everyone there hated her and that they would only let her look after these rooms. On top of all this, and believe me there was more, the thing that sent me over the top was the day she was helping me get ready for a shower.  I was in the bathroom and I asked her to please get my shaving bag. I was trying to get my gown off and wasn't looking up so I did not see her come back into the bathroom and the next thing I hear is her saying "So what do you need out of here?" and at that moment I looked up to see that she had opened up my shaving bag and she was rifling through it. That's when I had had enough and I told her to get out of my bag. I told her she had no right to open my bag and to start looking inside. I had not asked her to do that I had only asked here to get it for me and that she had no right to go through my personal items. Lastly but most importantly I told her that I was not a child but rather I was a grown man and I expected to be treated like one. She said that she was only tyring to help, and I told her "Well don't". At that point she turned into the ice princess and then everything I asked for she made it seem as if it were an effort or I would have to wait a while as she was busy and she'd get to it as soon as she could.

I should have known she was going to be trouble. There had been other signs, like when I asked her not to open the drapes one day and so then she turned around and threw them back closed almost tearing them off their hooks and said something to me to the effect of me wanting to stay on the dark side again. It had nothing to do with the dark side, what ever that meant. It was just that I was still having a few headaches from the whole surgery, spinal fluid thing and the light bothered my eyes. Besides at the end of the day if i wanted the curtains closed then that was my right. At other times  she would get extremely irritated when you did things different than her way and you could tell by the way she then interacted with you. I finally had to ask for her to be removed from taking care of me. I wrote up a five page complaint about her, which is the first time that I have ever done such a thing about anyone for anything. The worst part of it was she was not the only problem on this ward. There were other nurses and assistants that were equally as bad. And to top it all off the bathroom that my roommate and I shared did not get cleaned for over three days and were talking about a hospital here.

To make matters worse, while all this was happening and I was trying to recover, on the Sunday following the surgery that has occurred that Friday I found out that we were going to have to go back in and do it all over again. The surgeon had come in that Sunday morning to have a look at the wound as he had normally been doing and unfortunately for me he discovered that the wound was leaking and not in a good way. I have to tell you that his news just about sent me right over the edge. I couldn't believe it I hadn't even left the hospital this time and we were going back in so this would be surgery number four. Anyway, the surgeon called all of the weekend staff in and opened the theatre up to do a quick emergency fix up. I was in surgery by noon and back in my room late that evening around dinner time. I was in pain and all I could think about was I was stuck in this hell hole of a ward. I just didn't know how much more I could take.

I only scratched the surface here but suffice it to say it was the ward from hell. It was so bad that on the Tuesday following my surgery they moved me back to the ward in which I started and hubby had just arrived to see me as he had been back in Tasmania all of this time because he had to take care of things on the home front. Anyway, he followed me down as they moved me back to the other ward and as soon as they got me settled in my new bed space and the attendants left I honest to God burst into tears. That's how bad it had been and if I had more patience and time I would tell you all about it but I also don't want you suffering like I did and it's painfully just typing all about it. The last few days in the hospital went off without a hitch. All up I was in hospital for two weeks and I hope that it will be the last time I have to see the inside of a hospital for a long, long time!

Well that's the short, long and quick of it and I once again apologise for the very long post. As I mentioned in some ways I didn't even give you the full story and you should be thankful for that as it would have killed you to have to read it all and at the same time I'm thankful too as it would have killed me to have to relive it all. Anyway, I am recovering well and It was three weeks yesterday since the fourth surgery. As it stands everything seems to be right on track so lets hope it stays that way. Until next time take care...

Hospital world... (part four)

Be aware that this will be another long post as have been most of the recent posts with the title of "Hospital world" So, here we go. I finally got admitted into hospital and put in a bed. As I mentioned before I had been given a private room but shortly after settling into the room I was told I would have to move to a shared room because the nurses and doctors looking after another man thought he might have TB and he had to be isolated. I was moved to a shared room with four other men. I did at least get the window seat. I got to look out over the city which was especially nice in the evening watching all of the lights in downtown Sydney.

As I had been told there would be no surgery on Tuesday because I apparently was stupid enough to eat something at lunch. (Okay they didn't call me stupid to my face but I felt as if they did earlier in the day). It would have helped if someone had told me not to eat. Anyway, lets get past that bad memory and move on. I spent a quiet night Tuesday and slept as well as one can while in hospital. It is a bit hard to get a full night sleep because the nurses keep coming in to take your temperature, blood pressure and your oxygen saturation. Basically they needed to make sure you hadn't died on their shift. If you had there would be so much paper work to fill out which would mean they would have to work a bit of overtime to get all the forms filled out. After a nine hour shift the last thing they wanted was all of that paper work much less a dead patient. Okay that's not really why they take all those obs (observations). They take them to keep track of all those basic bodily indicators while your there and to make sure everything is moving along smoothly. Well, that's what they told me. I still think it's all about the dying and the paperwork.

Wednesday was a quiet day as the surgeons told me that there would definitely be no surgery that day. Thursday was the day had an 95 percent chance of surgery so from Wednesday night at midnight it was no food and only enough water to take my tablets. I have to admit that I had to take a bit more water than they probably wanted seeing that I take 16 pills first thing in the morning and a little water just isn't going to make the medicine go down. Thursday morning rolled around I waited anxiously for word that the surgery would happen. The nursing staff told me that the would let me know as soon as they knew something and that they would probably hear something around breakfast time but no later than noon. About ten o'clock the nurse that was looking after me told me that surgery would be a no go that day so she asked if I wanted anything for a late breakfast. I said no and spent the rest of the day watching television or staring out the window. At midnight on Thursday night I started my fasting once again hoping that surgery would happen on Friday. I had an 85 percent chance for surgery on Friday so it was fingers crossed and what ever will be, would be.

Friday morning I took my pills with as little water as possible and waited anxiously for word from my nurse about the surgery. It must be that ten o'clock was a time in which things happened because at 10 o'clock a surgeon arrived at my bedside and told me that it was all happening. He told me that some one would be up to collect me in about an hour and that the surgery would happen around noon. Needless to say I was ecstatic. Well as ecstatic one can be when it comes to having surgery.

I was wheeled down to surgery as they normally do, bed and all. I was first taken into a pre-surgery room in which they prepared me for my anaesthesia. The anaesthetist explained everything that would happen and of course asked me if I had any question, which I didn't. He was hooking up lines to my already existing cannula which had been put in on Tuesday when I was first admitted. They next thing I knew I was in the recovery room. The anaesthetist had put me to sleep without even telling me he was about to do it. No "Now count to 100". No "Now count backwards from 100". No "You should start to feel sleepy". No "How are you feeling now?" No anything, nada, zilch, nothing.

As I said I woke up in the recovery room. However, unlike the first surgery and remember this is the third surgery, I felt like I was dying. The pain was out of control. I don't know what the doctor did differently this time opposed to what he did the second time but I had to assume he did basically the same thing. All he was going to do was to seal a hole that was leaking spinal fluid to stop me from getting headaches, fevers and possible infection. He also needed to remove the growth next to my spine so as to take the pressure off the nerves that it was pressing on and that was causing me amongst other things leg pain and numbness. So as far as I knew the surgeon did the exact same surgery. Now mind you the surgeon was different from the two previuos surgeies only becasue this time I was having the surgery in the public hospital opposed to the private hospital. This surgeon was the senior surgeon/registrar of the doctor who did the first two surgeries. In some ways the originally surgeon was involved in this surgery by giving the new surgeon some pointers/ideas as two how to fix the problem this time around but he just wouldn't actually be doing the surgery. In some ways I was actually happier with this new surgeon. He was young and vibrant but most of all he came across as competent and I believed/felt that he could fix the problem.

There was pain to be expected as the anaesthesia wore off and because the pain would get worse over time they gave me, as they do for all major operation patients, a button to push that administered a measured amount of morphine. I tell you what, I was pushing the hell out of that button and it was NOT helping. One of the nurses came over and I told her how bad it was and I mean bad as in "crying" bad. She got permission to administer an additional dose of morphine on top of what I had given my self. All in all they ended up giving me four more top ups before the pain started to subside. After that I was able to control the pain easy enough with the button also know as the PCA (patient controlled Analgesia).

I was finally wheeled up to my room which was on a different ward and in this room I only had one room mate. This ward was specifically for patients who had had surgery related to neurology. I was soon to find out that this ward was straight out of the "Twilight Zone" and I wondered if I was ever going to get out of it alive. I know what you're thinking. You're thinking it was the morphine talking. I've got news for you. I know exactly what happened for the next four days, and in the next post I'll tell you just what happened on ward 7 North.

Hospital world... (part two)

So where was I? Ah yes, I was getting ready to head over to the hospital on Tuesday to be admitted. Now on Monday prior to my admission I received a call from a woman at the admissions office telling me what I needed to do on Tuesday when I got to the hospital. I was told by the woman that I was to go to the admissions desk and then after I filled out a few forms I was to go to a place called IBAC which would be a sort of holding place for me until my bed was ready up on the ward. I told the woman that would not a problem . I did exactly as I was told when I got to the hospital on Tuesday. but instead of going up to IBAC the woman at the admissions office told me that my bed was ready and that I needed to go straight up to the ward on level 9. Not being one to question authority, well I don't question it often and decided that this would be one of those times that I didn't, I once again did as I was told and headed up to level 9. When I arrived on level 9 the nurse in charge informed me that unfortunately my bed was not ready and that I needed go back down to IBAC and wait. So off to IBAC I went to await further instructions. Something told me that this day was not going to go as planned and that there were going to be a few more surprises.

Not long after arriving at IBAC I found out that my intuition was not wrong. The nurses at IBAC told me they were indeed expecting me, to have a seat and that someone would be over to talk to me about a few things in reference to my hospital stay and upcoming surgery. I took a seat and I hadn't been sitting for more then ten minutes when suddenly a surgeon arrived with one of my neurologist's registrars (it's what a doctor in training is called, kind of like a resident but one step above a resident). I was surprised to see a surgeon but I was about to be even more surprised by what he said. The surgeon introduced himself as Mark and told me that they might be doing my surgery that afternoon. Mark said that he needed to know when I had eaten last. I told him that I had just had a sandwich about an hour ago as it was lunch time. He then got a bit cranky and said "Well that's no good. We won't be able to do your surgery today". I of course told him I had not been informed that I was going to have surgery on Tuesday but rather I was only going to be admitted. I also told him that I had been informed I would be in hospital for a few days and that on Thursday when the surgery list came I would then find out when I would be scheduled for my operation with Friday being the earliest and most likely day. I said that if someone had told me that I might be having surgery on that Tuesday I would have never eaten, but alas no one had let me know and unfortunatley due to the lack of information I had eaten lunch.

The surgeon explained to me that they had planned on trying to do the surgery on Tuesday as it was an urgent operation and that they admissions people should have told me that so that I could have fasted for at least six hours before the surgery. That of course had not happened and because I had eaten they would not be able to do the surgery. The surgeon then told me he thought it would be best if I went back home until they called me. I told him that I was not prepared to do that. I said I had discussed all of these arrangements with my neurologist earlier and we had decided that it would be better for me to be in hospital. The neurolisist thought that it would be better for me to be in hospital so that they could keep an eye on me especially in case some new complication arose before the surgery. He also thought that by being in hospital it just might hurry the date for the surgery. I told the surgeon that I had come prepared with the knowledge that I would be sitting in hospital for a few days and that I also knew that during those days the doctors would not be actively treating me, that I would technically just be resting while awaiting my surgery. The surgeon wasn't happy with that idea but I insisted that I was not going back home. Besides I had just spent $65.00 and was not prepared to spend another $65.00. I was not going to waste a $130.00 and be inconvenienced because of someone elses breakdown in communication. He turned to the registrar and told her that he had to get back to surgery and for her to sort this all out. I repeated to her that this whole thing was not what had been planned and I was not leaving. I told her that she was going to have to talk to whoever and that they needed to fix this problem. She said she would go see what she could do and she would be back in a bit.

You can only imagine how I felt. I'll tell you how I felt. I was furious about the whole thing. I thought I was being jerked around and I didn't like it one bit. I mean after all I was the patient. I was the one with a huge growth coming out of my spine. I was the one who was having headaches and fevers due to spinal fluid collecting in the growth in my back and last but not least I was the one in pain who was also losing all feelings in my legs due to the pressure that the growth was putting on various nerves in my back. Needless to say I was pretty damn PO'd by this time.

About 45 minutes later the registrar came back and told me that they had arranged a bed for me. She then also told me that because they had to wait to find out when I would be having surgery, that I would have to start fasting every night from midnight just in case they could squeeze me in for the operation. The fasting would start on Wednesday night so I was given a reprieve for Tuesday and all day Wednesday as far as eating was concerned. She told me that the surgery would definitely not happen on Wednesday. She said that there was a 95 percent chance it might happen on Thursday. There was an 85 percent chance for Friday. If it hadn't happened by then that there of course was no surgery on the weekends but if the surgery hadn't happened then it would definitely be schedule for Monday. Other than that it would be a waiting game and I said that it was fine by me.

Okay that's enough for this installment. So next up I'll tell you when the surgery finally happened and the big hiccup that occurred after the surgery. I hope I'm not boring you with my long, wordy story. I just can't help myself when I'm writing. Anyway, take care and I'll be typing the next installment as soon as the feeling returns to my fingers from typing all of this gibberish. I'll be back soon.

I know, I know....

...it's been forever since my last post. I feel awful. Well okay maybe I don't but I do feel that I should at least do a quick update for the loyal readers, all two of you. Okay maybe all six of you. Anyway, believe it or not but your's truly is still sitting in Sydney awaiting the powers that be to decide on a date for my fixer upper surgery, or should it be called let's try this again surgery. Whatever you want to call it they still haven't decide when they are going to do it. I am however under the impression, based on a phone call I got a short while ago, that I will be entering the hopital tomorrow under my neurologist care becasue the lump that has formed "again" is causing me considerable nerve pain. I will at least be able to get adequate pain management while they take there sweet little time in deciding when they can find the time in their busy schedule to fix something that just could very well be their fault in the first place but let's not get ahead of my self.

All I want to say is I'm hanging in there and thanks everyone for all of your support. I'll try to post something from the hospital but in case I can't know that your thoughts mean a lot and I'll let you know what's going on as soon as I can. Until then take care one and all...

Back to back to back...

Well we're back from Sydney and I've seen the doctor. To make a long story short, we have to go back to Sydney next Thursday. I will be checking into hospital on Friday morning at 6:30 am to have lower back surgery. Since it's a Friday I don't suppose much will happen over the weekend and I'm looking to be there based on that until at least Tuesday but more likely Wednesday. I'm not sure if the doctor will restrict my flying or not but if he doesn't then I'll be back home ASAP.

I have to have the surgery as the opening were the nerves run through up my spinal column is narrowing which is affecting the overall nerve patterns. This is the reason I'm having so much pain from my back and down my leg not to mention I'm losing sensation in my left leg all together. We are also hoping that as an added bonus this will give me a little extra relief from the pain associated with my peripheral neuropathy in my feet. Only time will tell if that wish is granted.

As for James' mum, she is holding her own. She needs to gain so much weight but she has no appetite. we took her out to eat several times and she did eat but other than that she eats nothing. We will work on he some more when we are up there next week. She's a fighter and we will fight along with her as long as she wants to fight.

So that's the excitement around here. I'll still post a few useless post between now and next week until then I'm out of here. Enjoy...

Here we go again...

Alrighty then, now that we are pasted the whole countdown excitement, it's time to get back to some regular posts which has to be a good thing, right? I mean you know how brilliant I am at writing jaw-dropping, earth shattering, colour-laden, mind-numbing and down right interesting posts, don't you? Given that knowledge I wanted to wait a day or so to let you come down from the high I'm sure that many of you were on from the unveiling of the countdown surprise. So let's get to a new nail-biting post.

Now do you remember a little over a year and a half ago when all at the same time I was having such a hard time with my feet, our cat had to be put to sleep, my dad died, and James' mum found out she had bowel cancer. You don't remember? Well it doesn't matter because I've just reminded you. Anyway, since then I have found a medication regime that keeps my feet pain at a minimum, we got a new cat, albeit she has issues but let's not go there, my dad unfortunately is still gone but my mum is doing better and moving forward and last but not least James mum finished her 6 months of chemotherapy and was given the all clear. Things are finally getting back to normal.

Well, normal that is until two weeks ago when we got a call from James' brother. I watched and listened to the phone conversation between James and his brother and heard James say things like "Oh no" and "Oh John". All I could think about was that John's dog had passed away, which would have been his second in the past few months. Both dogs were getting up in years so it's not like it was a surprise when the first one passed away. So after James hung up the phone I of course asked what had happened and to my surprise it wasn't the second dog, nope not even close. It was about James' mum. Her cancer has come back!

That's right the cancer is back and this time it's angry. Here we go again. James spent this past week up in Sydney spending time with his mum and helping getting things organised. She is going to have major surgery again which will include her receiving chemotherapy during the surgery itself and then another two days worth right after the surgery while she is still in hospital. She doesn't have a choice about the surgery. Well she does but the other choice isn't such a positive. She was told if she didn't have the surgery she is looking at 6-12 months at best.

James is being very calm about all of this and I think in a way he knows he needs to be because this time it's game on and he will need to make the best of the moments he has with his mum. She goes to the oncologist on this coming Thursday at which time they will discuss what is exactly going to happen and when it will happen. We expect the surgery will be scheduled within the next two weeks. James will be flying up the night before the surgery and plans on staying a few weeks after the fact to help out as best as he can. I will be staying here on the home front holding down the fort. I'm not even going to mention that while all of this is happening James' dad has been in and out of hospital with a nasty infection in his leg that is going septic. Good thing on that note is his dad gets out of the hospital today.

So, that's the newest thing happening in our neck of the woods. All I can say is life happens and as we get older this is how it plays out and it's never any fun. All we can hope is to weather the storm and hope that at the end of it we make it out to the other side. Until next time...

A ten day sentence (I mean hospital stay)...

Warning: this will be another long post. Also a comment was left on the previous post saying that I was awfully chipper in my previous musings or the pain medicine was working over time. I would put my money on the pain medications as there is never anything chipper about a stay in hospital. So, when we last left our fearless adventurer he had run in to a bit of a road block, finding himself ill and about to be booked into a stay at the local hospital.

I spent one more night in the hotel before I started my time in hospital because my appointment with the specialist had run late and it was already almost 6:00pm so they weren't able to book me a bed until the next morning (Wednesday). I enjoyed the reprieve with a bit of dinner and a last minute cuddle with my partner. I was also feeling a bit better that evening because one of the first things the specialist did was to change the current level of my pain medication from 60mg Oxycontin twice a day to 80mg twice a day. The extra pain numbing boost was a welcome bonus to the impending doom of a hospital stay.

The following morning (Wednesday) we got a call from the specialist's intern who said my room/bed was ready. Now I can't say that I dashed quickly to the hospital, because even though I knew it would be a good thing to finally try to get to the bottom of this if we could, but I mean really who wants to spend time in hospital? Anyway, when we arrived I was taken up to ward 9 South (Oncology/Hematology). Now you might ask why a blood based ward when the pain is in my feet. Well the answer to that my friend is because no matter what I go into hospital for they always take the underlying factor of my HIV+ status into the equation. Since HIV is a blood based virus then the patient is placed in a Oncology/Hematology ward, or so that is what I have always been told. I've been placed in the same type of accommodation during each of my previous hospital stays since becoming positive 22 years ago.

We arrived at my room/bed and bed would have been more accurate as I was placed in a four bedded room with two of the four current beds being occupied. This was going to be fun. The four beds shared a shower and bath not to mention a shared toilet which left not much privacy due to the paper thin walls if you catch my drift. The two other occupants seemed nice enough, but then again looks can be deceiving. One man was in for some sort of kidney, blood, dialysis thing and the other man was just plain old. Sorry don't mean do be ageist but it was true. The nurses seemed efficient, pleasant and most of all capable. I can be highly critical of nurses seeing that my husband has been nursing for the past 20 years so I know what to expect.

I got settled into my bed and took note of my bearings; bathroom directly through the paper thin wall to my right, nurse/television control buzzer to my left, exit down the hall and hang a quick left to the lifts (elevators for my friends in the states) and that would take care of my needs for the moment. As usual I hadn't been there long and a nurse showed up to take some blood. The some blood turned into ten tubes of the stuff taken out of my left arm. Three quarters of the way through I asked her if she was going to leave me any blood to which she politely replied "Don't worry you still have what's left in your right arm". I also got a visit from the specialist who asked if I was settling in okay and I said yes. He asked how the pain was and if the new dose from yesterday had helped and I said it helped a little but I was still get some shocking (literally) moments. So he bumped up my Oxycontin to 100mg twice a day. So within a span of less than 24 hours I had gone from 60mg twice a day to 100mg twice a day. I was starting to worry rather or not I would be able to function at all by the time this was all over if they kept increasing the dosing. I was already pretty drugged as it is. Anyway, the rest of the first day was quiet except for an x-ray, pretty common stuff really.

The next few days were pretty standard. I saw a Rheumatologist for the aching in my hands feet and ankles. She said she would schedule some more blood tests and a few various scans and stuff. There was more blood drawn than I believe necessary but none the less it was drawn. I had a bone density scan done of my lower back spinal area, hands, feet and ankles. The scan of my spine along with the MRI of the same area was looking at the point at which the nerves start to spread away from the spine. They were looking for any disruption or problem which would be aggravating the neuropathy. We weren't looking for the cause we were looking for the agitators, if there were any. Also on Monday my pain relief was bumped once more from 100mg Oxycontin twice a day to 120mg twice a day. All in all I made through to the first weekend and during that period not much happened purely because it was the weekend so I guess that in the hospital unless it's critical they don't do scans and stuff.

This would be as good as place as any to discuss the food. Now we all know that hospital food is notoriously bad and I have been in hospital way to many times to pretty much attest to those rumors. I have been to at least one hospital that I can remember where the food was actually quite nice, of course it was a private hospital and I was paying through the nose for the luxury, hell it even had cable television, but I digress back to the food. Here's my question why is it that while you are in hospital, which means to me that you must really, really be sick or otherwise you wouldn't be there, why oh why than do the try to kill you with the food? I mean you already feel bad and they keep telling you need to eat to keep up your strength. That would be all fine and well except for that fact that everything sat done in front of you that is supposed to be food is tasteless, in many cases unidentifiable, and in most cases what is supposed to be hot is cold and vice verse. I just don't understand. To top it off it is delivered on schedule so every day, 7:00am breakfast, 12:00pm lunch and 5:00pm dinner with variance of only +/- 5 minutes usually it was on said time. How do they do it? The only other thing you can depend on was the ice cream. you know the type. the kind you used to get when you were in elementary school. It was one of the few things that was edible. I mean it's not primo ice cream but it also hasn't changed since I was in school. it still comes with the little wooden spoon. I lost 7 kilos (15lbs) during those ten days. So ladies if your listening, the hospital diet is the way to go.

Over the weekend one of the interns that works for my specialist cam to see me on Sunday he told me that on the had organised an ultrasound of my back and kidneys region for Monday and that they were still trying to organise an ultrasound for my hands. I said great. I was told that I couldn't eat anything after midnight and I could have water only to take my pills in the morning. Once again not a a problem. So Monday morning arrives and not late into the morning a porter came up with a wheelchair to take me down to the ultrasound department to have my test done. The next thing I know this technician is lubing my hands up and getting ready yo do the scan of my hands. I said oh great the were able to get this test scheduled to. She asked what I was talking about to which I explained what i had been told by the doctor to which I got the reply " I don't know what you're talking about. you're not schedule for a kidney scan. we should know we're the ultrasound department. " I told her I was questioning any of that I was merely relating to her what i had been told. She again told me that none the less I wasn't scheduled for the kidney scan. I said " What ever." During the hand scan she asked me at on point while pressing on this one joint as to rather it hurt or not and I said no. to which she responded "That's not what my notes say." I'm all like well sorry about your notes but that doesn't hurt. I should have stopped there but inadvertently I let out of my mouth that I wish I had known that the other exam hadn't been scheduled because I wouldn't have fasted to once again she had a quick reply. "I don't know why you fasted either. You don't have to fast for that." I closed my mouth at that point and waited for it all to be over. After returning upstairs to my luxury accommodations I made a very reserved yet firm enquiry as to what the hell just happened. Shortly after I was told that there had been an administration error which had been rectified and I would be having the test done in the morning 100% without a doubt. Apologies all around but unfortunately I would have to go without food one more night. OK fine as long as you promise it will happen tomorrow. "We Promise!" The next morning the porter showed up bright and early at 8:30. This is a good sign, punctuality. I arrived in the Ultra sound Department and five minutes later a girl came to collect me, but instead of collecting me she said your test has been cancelled and promptly had me sent back upstairs. Well doesn't that just bite the big one. Needless to say I was just a tad NOT HAPPY. This time my enquiry as to what the hell just happen was not reserved but way more than firm let's say it was ballistic. In the end apologies all around sorry for the mess up but yes the test was supposed to be canceled but another error. Now I'm just worried about if you can't schedule a simple test how the hell are you going to diagnose anything?

I eventually calmed down after talking to James who unfortunately had gone back home the previous Sunday because of work which also didn't help my mood. The rest of the week went by quietly they continued blood taking and they added a new medication to the mix and they kept increasing it everyday. The doctor told me it would really make knock me about along with the other medications I was taking but he thought it would work. From Thursday afternoon (day*) until I saw the specialist the next afternoon I had my first pain free hours in three years. We had done it. Albeit as i said using high doses of a lot of things but I was not in pain. My feet were still numb to the touch but numb I could handle. So the specialist said I would be paroled in the morning and I thanked him for all of his efforts and we were done. Saturday I waited for my discharge papers and medications and the funny thing about that day is I finally got discharged at noon by which time lunch had been served, and I'll be damned if it was not the best looking plate I had seen in 9 days. Go figure.

Epilogue. As it stands I have been pain free for 6 days with two small breakthrough episodes for which the doctor gave me another pain medication that works quickly but as it stands things look good. The downside is my head is in a constant whirl and blur, hence my rambling and god knows about clarity of this post and then there is the fact that i now am taking 30 pills a day to make life what it is and what that is is that I can just keep going forward until something better comes along. Thanks for your patience have a great day and Enjoy...

MRI, doctor visit, hospital in a blink of the eye...

Get ready this is a long post.

So, as many of you may or may not know I have been having a horrendous time with the peripheral neuropathy (nerve damage) in my feet and we have had even more trouble finding the right way to manage the pain. We have tried all of the usual neuropathic medications but to no avail. I will say that in most cases the medications tended to give some relief albeit only temporary. We ended up with the last alternative which is analgesia. Now the type of analgesia I'm talking about tends to be a bit stronger than Panadol (Tylenol to those of you in the in the US). The analgesia I'm talking about are opiate based pain relief. You know the ones I'm talking about, the big guns or party favours if you like for those of you living in slightly more metropolitan areas such as LA, Sydney, London, New York, Dallas, Paris, you get the idea. Not that I'm suggesting that any of my loyal readers (all 6 of you) would every think of taking said drugs as anything more then appropriate pain management. I'm sure that most people would never every see these drugs as anything more than pain management much less a form of entertainment. Would they? Anyway, we did keep one of the neuropathic medications to take along with the pain relief as we felt we would get better coverage over the pain.

In the end the pain still won. I was having what is called breakthrough pain which is what it sounds like the pain actually breaks through the pain relief ceiling being provided by the drugs. On average these breakthroughs happened three times a day and some times more. The pain lasted around thirty minutes but it could last for an hour or more and during those periods of breakthrough pain I would score the pain level a 5-8 out of 10. When I wasn't in one of those periods I would still have an occasional zing of lighting run through my foot or my feet would suddenly feel like they were on fire but if those things didn't last long I just ground my teeth and rode them out. Also because the nerves are messed up I don't feel the ground so well meaning that even thought I get this pain my feet at the same time my feet are are numb. Go figure???That's why they call it nerve damage.

Now that we are all up to speed, and I apologies for boring to those of you who know that part of the story, let's talk about what happened when I went up to Sydney for my MRI. So the pain was totally out of control and by the time we went to Sydney to have the MRI done and to get a review by the specialist neurologist, I was taking 60mg of Oxycontin SR twice a day. Oxycontin SR is the extended release formula of oxycodone so you get relief over 12 hours opposed to a sudden rush of pain relief like you get from oxycodone which is taken like every 4 hours. The problem as I said earlier is the pain was breaking through between doses. Anyway, we arrived in Sydney on Monday night and the test was scheduled for the next morning. We went up to the hospital at 11:00am and handed in the appropriate paper work, which I had filled in prior, to the out patient desk and sat down. I was having a few claustrophobia issues ever since my little trip to the ER a few weeks back when I couldn't breathe and as many of you might know an MRI machine can give people a kind of oh say casket like feeling, yeah that's it, like being in a box that you can't get out of and definitely not the place for a claustrophobic. They even ask you on the pre-test form rather or not you have issues with claustrophobia. As a pre-caution I took 20mg of Valium to calm my nerves. I told the women who was giving the test what I had taken and she said she thought it was a bit excessive but what ever it takes, honey. In the box I went and half way trough the woman who had been occasionally talking to me through a speakerphone within the machine finally said she was going to quite asking me if I was alright because I was snoring to much. Hmm??? guess the Valium worked.

Test all done and it was off to the neurologist for his review of the whole situation. I've been seeing this doctor for a few years now for this problem and he is the best that I know of and I trust him. He did his usual exam and looked at the results of the MRI, which were inconclusive naturally and of no help what so ever other than to tell me that I have a bit of arthritis in my lower back. Hell, I could have told him that. I'm then one who groans every morning getting out of bed and it ain't because I don't want to get up. So then he says " When do you fly back to Hobart?" We said "Day after tomorrow" which his reply was "Ow (big pause), because I think it would be best if I admit you into hospital so we can deal with this properly." James and I looked at each other and just turned around an said "If you think it's best we'll do what we need and we'll go from there." And, that is how I ended up spending the next  ten days in hospital.

Now, I think that's enough reading for your poor bleary eyes at the moment, not to speak of my poor fingers. I will tell you all about what happened in the hospital tomorrow. It's a long post too, but just all sorts of fun. I guarantee. I hope some of you weren't expecting to hear about the whole thing because I am having a hard enough time typing this as it is, I mean you think 60mg of Oxycontin twice a day is bad Hmm??? you ain't seen nothin' yet. You'll understand tomorrow. Until then Enjoy...

Guess who ???

It's me! I'm back, but just barely so let me get my bearings and I'll write a big post about it later today. Thanks to everyone for all of their well wishes and kind notes. They meant a lot to me. It's kind of funny having friends that you've never met but on one level you seem to know so well. Thanks again and as I said I'll write all about my big scary trip to the big city and even worse my unforeseen imprisonment in hospital.