Gosh it is getting so confusing with all this coming and going. I am back home again! I think. Yes, just looking around, hmmm my furniture, my computer, my kitchen, yes I am home!
I came home last night which was Friday night here and so far I have made it through to Saturday evening. I did get a scare this morning though. I slept fitfully, had pain throughout the night, not agonizing but not easy to bear either. I tossed and turned and finally went and slept on the sofa in the lounge room. As I woke this morning and sat up I realized I was in a LOT of pain. Agony actually. Oh I was so disappointed. I just didn't want to go back to Hospice. Jack needed me home, I spent time with him last night and he was very clingy so I knew he was missing me and needed to spend some quality time with me. But the pain was getting worse. Jack was still asleep in bed so he wasn't seeing me in this pain thank goodness. Every time I have been in this amount of pain, which is quite a few times really, he has somehow been protected from it, he's either been asleep, or not with me, or something, it's really quite amazing. Anyway, I tried to tough it out but I just couldn't so I gave in and phoned Mum, she didn't answer so I called my sister who just lived around the corner from Mum. She answered and said she'd come right over and stay with Jack while Mum took me back to Hospice. We organized everything quickly over the phone, she would take Jack home with her till after dinner that night and then bring him back to me at Hospice with a few Dvd's to watch.
My sister and my Mum walked into my home at the same time (obviously we found Mum- she had been in the shower) and I grimaced at them. As we finalized a few loose ends while I puffed and panted and tried to breathe through the pain, Mum suddenly says "you have checked the driver haven't you?" The driver is the mechanism that pumps the Ketamine through the very long tube into the 'butterfly' which is a small needle inserted under my skin. We pulled the driver out and checked to see whether the little light was flashing on and off. It wasn't flashing at all. That meant it wasn't working. We phoned Hospice and spoke to Cecelia who is a darling and so very helpful, she told us to check the battery compartment which we did and found it EMPTY!
Well, the really good thing in all of this is that I was handling the pain and had been handling the pain without any Ketamine at all throughout the night. When I say handling the pain, it was certainly very far from pleasant and some relief would have been welcome but, the most important thing was, I was still at home (just) and now that we knew what the problem was, we could focus on the fact that I would be out of pain soon, which I was. We raced down to Hospice, they fixed everything up and got it running smoothly, sent me home with medicines in case of emergency and wished me all the best.
So I ended up okay but it was pretty scary being so vulnerable for a few hours. That is one of the things I hate the most about all of this, the fact that I am not okay without medication. I am not okay without someone to administer medication. I am reliant on others, which is something I have had trouble dealing with, it doesn't sit all that easily with me but I am learning that relying on other people is not necessarily a negative thing. However, the fact that my body is not okay without medicine in it is scary. I find that really scary, I mean obviously I feel vulnerable, which is not a pleasant feeling to have, but this relying on something to be physically okay is unsettling somehow. Is it because of some inbuilt gene that subscribes to the 'survival of the fittest' category? I guess I was almost arrogant in the belief that I could survive, I very rarely got ill, you know colds and flu type ill, I just very rarely got those things, I seemed to be strong, I could exercise and keep up even when I hadn't done any for a while, I just had this overall confidence that I was one of the fit when it came to survival, so this has thrown me somewhat. I often find myself thinking about strange things like, what if we went into some kind of warfare tomorrow and deliveries couldn't get through, trucks and the like, maybe petrol and gas prices go off the radar and I just can't get my medicine. What would happen to me. I would be in absolute agony within a very short amount of time. I wouldn't be one of the 'fittest' and that is scary to realize. I know I would be one of millions but it still feels odd and as though I should be capable of surviving on my own without chemicals and drugs. Without chemotherapy, I would be dead in 5 months! I mean what is that? What does a person do with that kind of knowledge. Anyway, enough already, I am home, I am managing for the moment and I will just take each moment as it comes, it's all I can do. I am reading and learning and challenging my beliefs and thoughts, thinking about things that haven't ever crossed my mind before. I am growing I guess.
Well, that will have to do for now dear ones as this Ketamine definitely messes with my head. I do feel fuzzy in the head and I am forgetful, mostly short term memory loss which is exceedingly frustrating. Whenever I stop I tend to start nodding off which can be very dangerous as I hit my head on the computer or the desk. I have promised myself that I will not get on the computer after a reasonable time in the evening, I am only allowed activities like reading on the sofa or things like that so that should I fall asleep I land on a soft place and can continue sleeping in peace and comfort. The trouble with this drug is that it keeps me waking throughout the night and it is very tempting to get on the computer and try and make the most of my wakeful hours by catching up on some emails or blogging or reading some blogs, all the things which I love to do and am very behind in. However, as wide awake as I feel at the time, as soon as I stop and sit down even for a few minutes, I find myself falling over and hitting the computer. FRUSTRATING. Never mind, I will adjust I suppose. And if I don't well then I will have to work out a plan to make things work better. Alright, take good care my dear, sweet supporters, friends, angels here on earth, you know who you are, you keep me going through some incredibly lonely and painful hours and moments and you have made magic come into my life. Where there was pain, desperation and uncertainty, now there is magic and love, hope, warmth, friendship and most importantly of all - love. Sending huge warm hugs out to all of you with my sincere thanks. Keep communicating with me, it so helps me to keep my spirits up. I will update some more very soon as I have so much to share with you. I just have to do it in small bits so I don't fall asleep and hurt myself at my desk. I have some stories to share and little events that I want to tell you about, just stuff that has made an impact on me and is simmering in my brain waiting for an outlet and waiting to be shared. Ta ta for now, love to you all Jen B. xxx