Hello from another first timer

[Deb1960]

Hi everyone, this is my first ever blog so I hope I do it right. Not sure what we write on here, I am awake and bored and thought I would log in and see how it all works. Spend way too many hours awake in the middle of the night but managed to sleep until 5 this morning so consider that a great nights sleep. Off to have my chemo disconnected today so get some freedom back.

[#2]

Welcome! Poor you, sounds like some long nights! I think people are on here at all times, so hopefully you'll meet some nocternal folk too! Good luck with your appointment today 🙂

[oldhippy]

Hi, welcome to the the 3am conversation area - there is so much going on for you, no wonder sleep is disturbed! - you can get stuff called Termazepam from your GP/Oncologist, it works - I use it sparingly, usually for a few nights after Chemo are the worst. Or else I stay awake all night in my workshop, pottering around, waiting for the sunrise so I can go down the street to the bakers and get fresh croissants and cappuccino and the newspapers for my darling wife. If not totally stuffed, take the dogs with me. You say (write) what you like - we are all on the same journey, a totally mad one, so give free rein to your feelings. Amazing the thoughts that now arise, the things we think about at this stage of our lives.... Andrew the oldhippy.

[Deb1960]

Hi Andrew, I am getting used to the being awake bit and mostly can catch up the sleep during the day, tried a sleeping pill one night in hospital (a place where rest & sleep are so easy to get, NOT!!!) and it ended up putting my BP down to under 70/60 and scared the hell out of the nurses and me so have decided to just grin and bear it as far as sleeping goes. My Oncologist had me on anti-depressants to help with the night sweats but they gave me the most horrid nightmares that were so realist they were waking me in fright, the have been assigned to the bin. It is a mad journey for sure, I have only been on mine since Jan 3 following a trip to A & E with no idea what was about to unfold. Deb

[Deb1960]

Hey there, yes I am sure we all get some nights that sleep evades us but i am learning to make the best of them and am looking forward to finding others who are online in teh middle of the night too. Was glad to get disconnected today, was having a down day and just wanted it off, I allow myself to go with the flow on the "bad" days and make the best possible of the rest. Besides without bad days how can we appreciate how wonderful the good ones can be. I make plans for my next little holidays, they have to be short as my window in between chemo cycles is short but I aim to do something I enjoy without over taxing myself. :)

[oldhippy]

Hi Deb, wow, your experiences pretty well tally with mine - - I was diagnosed a week before you, same chemo thingy, blah blah blah. All the medical crap that we have to put up with. Its the head stuff that drives you mad - the niggardly little things as well, such as being too stuffed to get the paper - as far as I can work out, its the Chemo Brain effect kicking in - you start looking at things a whole lot differently...and some of it , well, could just as easily have given it a miss. Medication - find stuff that works for YOU - anti-D's are weird, you have to find the "right" one (bit like Oncology - the "lets give this a go" approach to medication) Same for sleeping stuff - I find the light green ones work well, the blue ones are Bad News - dont touch them. Calms the dog down, but thats about it. Talk to a cancer nurse here if you can - lets be realistic, its the nurses who are running the place anyway. Bit more informative too, usually. Cherish the good days - hit a gallery, go out for a coffee, anything, even if you cant plan days/weeks ahead. "Be here now" as they said in the 70's. The bad days - their crap, nothing more needs to be said. Andrew the oldhippy

[Deb1960]

Hey Andrew, How do you get friends on here? Looking for a friend request button or something I suppose? Maybe I can blame the chemo brain for not finding it...lol they didn't tell me about the chemo brain, was mentioned in the small print some place, like who reads the books that much at the begining anyway, but had no idea it would be so bad, when you are used to running 2 offices at the same time this comes as a shock to the system, I can't even type now without having to look at what I have typed before sending. Anyway if you know let me know as I would like to add you as a friend if that is ok. Deb