Well we all know how last time I had this done went, a bit of an epic disaster and add in some outside influences and it was downright a hell week. I am hoping that this time it is nothing like it and to get more success out of it. I am not aiming too high, kind of expect a bare minimum but hope for the best scenario.
The PICC line was done at about midday from Dr Smiley Grumpy Bum I don’t want to be here; from there we went and had some lunch as I was a tad on the hungry side. I guess it was the last lunch for a bit, the last infusion I had the food at the hospital was incredibly bad so the day I got out I hit Nandos for an extra spicy flavour fix!!
This time I am in a different room, one of the more newer rooms and I have my own tv remote unlike last time and I have my own private bathroom, also unlike last time. So I am already feeling I have my space to be calm and get through this next week. Ketamine does a lot to the emotions and I have requested that I have no visitors other than Bill. I don’t mean to be rude or shut people out I just need to be in my own head space right now and just focus on me. I know y’all are thinking of me and are there for me and for that this is enough.
Its hot weather right now and I hope that this heatwave ends soon, the room was incredibly hot when we walked in and Bill pulled the curtain down and hopefully this helps keep the room cooler.
So far there is a couple of nurses that I remember from the last time that I was here and it’s the same every ½ hour ish blood pressure, temperature and pulse checks… And as I type it looks like someone is about to come in with something… Dinner! Well it “seems” ok edible at least but it was so early, a routine I have forgotten about. Who eats dinner at 5pm?? Strike that, the food assassins must still be here! Oh wells!!
This time I am going to be a bit more vigilant about the amount they drop my medication, last time was a massive drop and I think it was what attributed to it failing. I was in so much pain I don’t think my receptors went to sleep, the woke the heck up!!
Day one ended with the dreaded nausea L I was lucky to be able to get the nurse to get me Zofran as I know it is what works best. Still I didn’t sleep well I am happy I bought a face mask and my ear plugs but when a nurse is in so often it’s really hard to sleep.
I forgot the amount of emotions this barbaric treatment sends flying let it be said I do NOT want to ever do this again. Today a mish mash of a LOT of nausea a LOT of retching as well as a monthly visitor to really make the week even more of an emotional screw up. So the routine of Zofran tablets, Maxalon and injections begins! *sigh*
I just wish I could do this in my own environment where I could sleep in my bed and be comfortable, the cold white walls and loneliness of the hospital is both a blessing and a hindrance.
I don’t want to see any of my friends and family I need to focus on me and I hate that I am such a hermit for this but I know that I have to. I can do some contacting on FB and that will suffice. I have a headache and sleeping is really weird and its almost like I close my eyes and things are colourful and then when I open them things are black. I doze in and out of some weird dreams too. Nothing scary its just odd. I hope I have the ability to keep typing as the week progresses. I assume typos will be bad but I should remind myself I can fix it later. Bill came in to me saying how I never want to do this again, I have no idea how people do this over and over and should this be my life I will be really sad but should it be I am going to have to chew on a bit more concrete and HTFU!
was really a cat napping day, It was hard but all I wanted to do was sleep, I am not a fan of lazing about all day but I guess I need to do what I can to get through this. I vote sleep the week away!! Nausea has not stopped and the weird way of falling asleep not dreaming but hours passing is happening. I am SO very very tired and pain is not leaving me at the same time it is not getting worse. I have a shocker of a headache but nothing that I can’t blot by resting as much as possible. I know the nurses need to do their job but I just want to be left alone to sleep.
Another nap day, kinda well I wish I would be left alone though. There was a nurse, Nurse Super Dipshit whom asked if I had seen spiders? Now seriously why would a person ask this, It is just crazy and an incredibly STUPID thing to say because so many people give up this treatment because of the side effects and how they can’t cope. I know that should I suffer hallucinations that the things are not real and I know what it right from fantasy and though being on this drug that does leave you in this altered state you just cannot begin imagine how others may feel.
My pain levels are up and I guess that was because I was given a different drug, a 12 hour rlease one and not the 24hr release that I am on. I pride myself in the hard yards that I have put in to keep my dosing right and it is so hard to come to this situation where your meds are now all over the show and these are the people that are supposed to be doing pain management? How are these poor doctors to get their hard work out there as it should when this is happening? I never agreed nor talked about a medication change and why did they ask us to bring in SO much of my medication if it was not to be used? I hope that my medication does not go missing like last time? Just as I was about to frantically look on Dr Google my Dr walked in and I was able to sort the issue out, I just hope all this bouncing about with tablets does not cause problems later!
Woke in a lot of pain today but after I got some of my usual meds into me I was ok, I was a lot more alert today too. It’s so hard to be laying there sobbing in pain and you cannot do a thing. I despise being at the mercy of someone else but I know this has to happen to make this work.
I still do not want to go for walks alone and nor do I want to even attempt it, I don’t feel 100% me and would prefer to keep quiet and sedate than to try and fight it and walk around like it did last time and crashed into walls. It’s such an odd feeling, really and I am glad to get to max dose early and to be at the max dose for as long as possible. Last time I didn’t and I believe that this was also part of the failure of the last attempt. I can say I am better prepared this time but I don’t think that I would do this again without the same amount of thought that I have put into this time. When I hear people doing this every three months I just think that they need to think of something else but who am I to talk about another’s pain, I can only say that this is not what I want for me. If this ever happened I would have to deal with it even if it’s one of the last things I would want happening. I know that the body does become immune to medication but as I see it I have been pretty good and it will be interesting to see how things pan out after this.
The medication that I came in on is the same I had been taking for 3 years it is good so I guess that if I go up to then over that then it is would be time to re-assess. I hope that I sleep well tonight; last night was pretty rough so I am tired but the Ketamine does not seem to allow proper sleep. It’s like you sleep is rapid sets or you fall asleep dream nothing but a few hours pass. It’s the weirdest thing but you don’t feel like you have had a proper sleep.
Seriously I wish people would learn to shut the damn door! Hrumph! I am so glad that I bought the face mask because the amount of times I have woken to the door wide open is insane. I have no clue how people who suffer hypochondria actually enjoy being in hospital. I sure as heck do not want to be here and would so much prefer to be at home. I want to be able to wash me and I want to be able to have control over my medication. I am so tired of all the pain at time that I would not normally get pain. I manage my meds really well and I hope that not to have to do Ketamine therapy again but if I have to I do not want to be a repeat person as in every few months, its crazy. I sound so whingey right now and it is not my usual me it’s a very much that Ketamine makes you more emotional but I guess it is how I feel.
I am really tired today and I am counting hours minutes and seconds till I get out of here. I am not one to speed up things but sometimes you just got to get to where you need.
I really want to go home, I have hours minutes and seconds counted. I want the control of my medication. The random times they give my meds is so destructive and does not help one bit especially that a tablet designed to be taken 12 hourly is given at 6am and 8pm thus a 10 -14 hour cycle. It’s a better cycle to keep it as close to 12 as possible most of the time. Bill has gone to the nurses and told them, much better from him than a docile me that may just not fully know what’s going on!
I really know my body and I am coming out of this like last time knowing that I am doing the best that I can. Pain specialist’s first point is that you are taking too much and I believe for the most part there are many that this is very applicable to, but me. I have never taken too much and it has been proven twice. This does not mean that my mind is closed to medication reduction as it always is; I totally believe that the less you take the better it is. I guess that the less chemical that is going into your body the better it is. Don’t think that I am one to be freaked out about every single thing that I consume either! I enjoy a glass of wine as much as anyone else and believe in an all things in moderation. I just see too many people bounce from doctor to doctor talking about this that and the other without so much as thinking how to prevent things or make life better without the extra tablet for the latest thing. You need to be pro-active about your body in a responsible manner and not laze about expecting for the miracle cure! I want to be functional and want to do the things I want to do, I have had to adjust so much in my life that I and so sacred that I am going to lose what function I do have. It was incredibly hard a few weeks ago to be wiped out ½ way through helping a friend and being unable to continue because of medication side effects.
Infusion ends tonight, it will be SO nice to be able to get up without dragging a machine about with me. I hope to sleep better too!
Yet again they stuffed up medication times and Bill went to the nurses station to tell them and he got told off! Seriously we understand that they are very busy but there needs to be some sort of consistency with my medication times as best as possible and 1.5 hours late is just unacceptable!
FINALLY!!! It is just SO awesome to get out, I know hospitals are there for a reason as is this treatment but there is no place like being in your own environment!! I like to be in control of my medication and when the times of my medication is constantly mucked up it makes it really hard to keep things consistent. I firmly believe that pain management is about keeping control of the pain so if you are getting pain in a manner that you need more analgesia it is not under control. I would prefer to take three tablets routinely over the day to keep pain levels down but still be in some pain than to take two and have pain that kicks through creating the need for extra bumping of medication to ease the pain and be house bound or bed bound. This is not something that works for everyone and I am certainly not advocating a thing by any means I am merely talking about myself and what I feel and what has worked for me.
Lo and behold yet AGAIN there was a massive error on my discharge medication list an error that needs to be fixed because of the type of medication and the permissions that I need. Bill went to the nurses to get if fixed and the just hand wrote on the paper, like this is going to be ok!! ANYONE could write this! They didn’t want to add in the aleration because it would “take a few minutes” so they just photocopied the medication chart and gave it to us. I hope that there is no repercussions down the track or we will be really mad. They even stuffed the times up yet again, how hard is it to count 12 hours?
The PICC line was removed quickly, not without the rip and yanking of the sticking stuff that held it in place and a nice sting as the antiseptic touched the wound site. It’s interesting, last time two nurses walked in and took it off, neither were wearing gloves and needless to say this shocked me but from what I had witnessed over that week it was nothing out of the ordinary. It was great to see that the level of care had increased since my last stay but the insanity of the nurses running around like headless chooks missing so many things and many things being really late is beyond me. It is clear to see that they are stretched for time and really need more staff. This is an issue that I did not think would be a problem given that it is a private hospital. I am SO glad to be away from the horrors of the food they serve, the chef needs to be sued for food quality negligence and they need to get to a proper routine! My appetite was pretty non-existent so I really needed what I did want to eat to be palatable and when it was not I just did not eat. I guess this is not the end of the world because I am overweight and a loss of a few kilos will not hurt, but what about a person who is underweight and this happens?? I guess that I expect that because we are paying so much to be there I would like better service.
I can say this time was “easier” than last time I guess knowing what you are going to go through is so much better. Basically the moment the nausea hit that first night I knew what I was in for and it was pretty much how things went. I didn’t walk about alone like last time because of how I collapsed last time and I did NOT want them stopping the infusion at any point like last time. I believe this too was a contributing factor in why things failed last time, essentially I did not get the full benefit of the treatment. Though I did not experience waking in excruciating pain like last time the pain has been there and so far today I am having little success getting it under control. My pain levels today are just like last time and I am really upset about this, I do not want to alter my pain medication at the same time I do need to function. It is early days and I will do my best to get things functional again. I am incredibly tired and was happy to get a nap in this afternoon, essentially left the hospital had some lunch got to the van and slept. Yes I had a Nando’s fix and tonight I hope to have some aisian food nearby. This area is packed with Asian restaurants and I want full advantage while we are here.
It’s been hard wonderful to have so much love and support from so many people too. I never wanted any visitors because I needed my space to get though the week and am really glad that this was respected too. I was so happy to have hubby come each day and help shower me because I just did not want to have a nurse help me. It’s undignifying enough to have to be in hospital when you are feeling poorly than to show the great white whale of a body off!!
These next few weeks will be interesting and I am nervous and hope that things go well. I was happy to hear the Dr say I have done such a great job over the years too. I guess this is a massive compliment because it is from a pain management specialist. It really does pay to stay with the same doctors, you build up a relationship and they know you the history something that new doctors don’t know. My diagnosis is made and its really a matter of keeping the pain under control and not a matter of trying to diagnose what is wrong. I have also tried many, MANY medications to get to what is working it’s best. I can tell you now there is no fun going from med to med either and it is nothing but wonderful to get to something that works. I resent being told that I am taking too much when all I have ever done is work towards not taking much.
I also resent being told in that past that I am “faking it” and I am a “drug addict”. I am a private person and it is only because of an individual’s colourful story telling that I have to share things the way I do. Essentially when all is out there others can make their own minds up on what they see and not what they are told. It’s an ongoing issue and a very exhausting one too and when a person knows right from wrong, true from false or just plainly makes up things it is downright repugnant and something that the individual needs to think twice about as they are so incredibly damaging.
Anyhow enough for now and I hope that I have been able to share a bit to you about my week and I hope that others whom have to go through this can read this and get some sort of understanding regarding what they are going to be in for.