I have now been prescribed the big stuff! Ketamine. I didn't have a clue what it was but I knew it rung a bell. Well I know now! It's horse tranquiliser pain medication! The one all those stupid kids get off on, except mines not been processed like theirs so it would be useless to them! I was assured that I would not hallucinate on the low dose I'd been prescribed so that was a relief but apparently it was fantastic for nerve pain, which at this point is my main problem. When my arm was floppy and painless it was a novelty but now it's still floppy and constantly in pain it's not so funny.
When i picked the bottle up (I was surprised it was in liquid form) from the dispensary at the hospital pharmacy, which by the way took them two hours because they only keep four bottles on site at any one time, the young lady asked my address, date of birth and whether or not I'd ever used ketamine before. I replied no and that was that really except for the fact that she gave me an oral syringe and showed me exactly where the 3ml dose line was. I was to take 3ml, three times a day. I asked her whether it would have any effect with the high dose of MST morphine I was on and she said no. She then burst my bubble by telling me that it could take a couple of days before I felt any effect. I felt like crying. I had already pinned my hopes on the x-ray armblock working, then we had to sit around for two hours waiting for the medication and then to top it off the darn stuff wasn't even going to work for a couple of days. I was in agony, I was tired because I couldn't sleep due to the pain and generally feeling really low and fed up. I really was hoping I could just get in the car, take some and my pain would be gone. When I got home I realised there was no 'side-effects' form, or directions for taking this medicine. All there was was a 'this is an unlicensed drug' form, what ever that meant.
So Thursday was when I started taking the prescibed dose. Friday I was fine but Saturday Iwoke up feeling a little light headed. I was having lunch with friends that day, Kayleigh, Sarah and Amy, but as the day went on I started feeling more and more strange. By 2pm I had double vision and by 2.30 I had to hold the phone at arms length to be able to read texts! I sat at Kayleighs like a stunned mullet (kiwi slang again). Imagine sitting staring at one thing with your mouth open not saying or doing anything. Apparently in the drug taking community it's called 'ketbombing'. The girls are in their early twenties and refer to me as 'mummy lisa', so to them this was hysterical. When Amy dropped me off home I went straight to bed to try and sleep it off because by this stage I was walking like a barn dancing crab...two steps to the side...one step forward, docey-do, docey-do...three steps to the other side...one step back, docey-do, docey-do!
stunned mullet |
For the first couple of days they increased the Ketamine and MST Morphine slowly. The problem was I had two different types of pain, as I explained in a previous blog. Firstly there's the bag of spuds under the armpit that gives a constant deep, dull ache that gets worse if the arm presses against the body. So I have to have a pillow under my arm to create a gap. Over the past month this had got a lot worse and was contributing to circulation and nerve problems all down my arm. Secondly was the actual nerve pain down the arm and into the hand. Both types of pains needed to be treated with different drugs.
MRI image of the tumours under the armpit |
The problem in this picture is what the red arrow is pointing at. That's the mass under my armpit, the bag of spuds. Now for those of you with no knowledge of the parts of the body and where they should be, that yellow arrow on the right is pointing at my shoulder blade. This is where a shoulder blade should be but as you can see, the other yellow arrow is pointing at the shoulder blade on the left and shows how the tumour has pushed it completely out of position. The light blue arrow is pointing at my arm bone. It's in the image on the left but not the right. This is because the tumour has completely lifted my shoulder. If you look at me straight on, my left shoulder is at least three inches higher than the right.
Then remember this little beauty. This is the MRI image of the boob on the back (the red arrow) below the shoulder blade. Whereas before this was lose and not attatched to anything, the crafty little devil has connected itself to the mass under the armpit and also a new tumour spreading across my chest. This is why i now can't have surgery. I really wish I had asked to have the boob on the back removed sooner because the tumours grow so fast that by the time you've got you're appointment to see the surgeon, it has become inoperable.
Anyway getting back to the pain, these tumours combined are like a constant deep dull ache, but fortunately most of the time they can be maintained with morphine which takes the 'pain' away and leaves me then with a more discomfort feeling. I'm on two different types of morphine for this, the first is called MST which is a slow release morphine which helps keep the pain at a minimum constantly throughout the day. Then if I have any peaks of pain , as a top up I have Oral Morph which I take for a more instant relief. Some days this combination works and other days my armpit will just ache all day. So while I was in hospital having the ketamine slowly increased they got the MST balance right as well.
Now for the second type of pain, the nerve pain. As I've said in previous blogs this is the hardest to maintain. The Gabapanten had started to work but since the first arm block wore off it had become unbearable. I honestly don't know what to do with my arm some days. Nothing soothes it...heat pads, elevation, hanging it, compression bandages, support under the arm pit, you name it some days I have to try it all. so while I was in hospital I was pleasantly relieved when the pain slowly started to ease due to the Ketamine. Again, some days were better than others for some unknown reason but on the whole it did seem to be working and I only had two mild episodes of hallucinations.
Firstly, again involved the girls! They had been to visit that afternoon but the hallucination wasn't till that evening. I was so dopey that I was dozing off watching television. I 'came too' kissing the girls good bye but not the normal peck on the cheek like we normally do, it was a real over the top, lips fully puckered and making the mwaaa sound! But that's not the worse bit. I came too kissing the second one and was fully alert as i continued to kiss the third one. It was as if they were standing there and I couldn't stop myself. Thank goodness no one was around!
The second episode is even worse. It was the normal pattern of me dozing off from being so doped up and slowly getting used to the increases in medications. This time however I 'came to' licking the inside of a yogurt pot making all the mmmmm, mmmmm sounds. The problem was I was fully alert and continued to lick the yogurt pot all because in my mind there was a lump of strawberry at the bottom of the pot. To add to the embarrassment I was still making the mmmmmmm sound effects too with my tongue half a mile out my mouth! Thank goodness I had my own room otherwise my room-mates might have been wondering what was going on behind the curtains. Sadly my hallucinations didn't have Brad Pitt in them, instead i get bloody yogurt and hot dogs.
Anyway getting back to the pain, these tumours combined are like a constant deep dull ache, but fortunately most of the time they can be maintained with morphine which takes the 'pain' away and leaves me then with a more discomfort feeling. I'm on two different types of morphine for this, the first is called MST which is a slow release morphine which helps keep the pain at a minimum constantly throughout the day. Then if I have any peaks of pain , as a top up I have Oral Morph which I take for a more instant relief. Some days this combination works and other days my armpit will just ache all day. So while I was in hospital having the ketamine slowly increased they got the MST balance right as well.
Now for the second type of pain, the nerve pain. As I've said in previous blogs this is the hardest to maintain. The Gabapanten had started to work but since the first arm block wore off it had become unbearable. I honestly don't know what to do with my arm some days. Nothing soothes it...heat pads, elevation, hanging it, compression bandages, support under the arm pit, you name it some days I have to try it all. so while I was in hospital I was pleasantly relieved when the pain slowly started to ease due to the Ketamine. Again, some days were better than others for some unknown reason but on the whole it did seem to be working and I only had two mild episodes of hallucinations.
Firstly, again involved the girls! They had been to visit that afternoon but the hallucination wasn't till that evening. I was so dopey that I was dozing off watching television. I 'came too' kissing the girls good bye but not the normal peck on the cheek like we normally do, it was a real over the top, lips fully puckered and making the mwaaa sound! But that's not the worse bit. I came too kissing the second one and was fully alert as i continued to kiss the third one. It was as if they were standing there and I couldn't stop myself. Thank goodness no one was around!
The second episode is even worse. It was the normal pattern of me dozing off from being so doped up and slowly getting used to the increases in medications. This time however I 'came to' licking the inside of a yogurt pot making all the mmmmm, mmmmm sounds. The problem was I was fully alert and continued to lick the yogurt pot all because in my mind there was a lump of strawberry at the bottom of the pot. To add to the embarrassment I was still making the mmmmmmm sound effects too with my tongue half a mile out my mouth! Thank goodness I had my own room otherwise my room-mates might have been wondering what was going on behind the curtains. Sadly my hallucinations didn't have Brad Pitt in them, instead i get bloody yogurt and hot dogs.