Hi everyone! I've been out of the ciber world for a while now, since about April, because I've been in hospital. What started as a sudden on come as feeling bloody awful with backache, ended up as pneumonia and a four month stay. Fortunately the hospital is literally a five minute drive away from my home so mum and Joe can visit everyday. The staff are fantastic and I've made some great friends! Its actually a palliative care ward I'm on so as you can read between the lines, its unlikely I'll come out. don't get me wrong, I'm still holding out for that miracle or magical drug that's not going to kill me. Apparently the PLX drug i was holding out for, I'm not well enough for and because i have so many growths and tumours the breakdown and toxins that would be released would upset the apple cart and make me really unwell. so I've decided no more extra treatments. I'm going to let my body do the fighting. So that makes its time to be a little realistic as well because with the ongoing symptoms I'm having its likely I've got growths in my left lung and now my liver. in saying that though, the last week I've felt fantastic. Hopefully its not the calm before the storm and its my body kicking into action.
Apparently when i was first admitted i was only given hours to days to live, so mum and Joe were saying their goodbyes. I don't remember much of this time because i was being kept comfortable. This is when my stubborn streak kicked in and the four month roller coaster began. I slowly started getting better, again! and again!...and again! I'm an attention seeker, what can i say. I joke about it now while I'm well but the lows have been awful with pain like you could not imagine mostly caused by my left arm. It is so distorted with so much swelling all the way down the my finger tips. This is because the lymph nodes cant take it away anymore so i sit here making sure the fluid stays out of the hand by keeping it elevated all day. Some days this helps and some days it doesn't.
From then to now though hasn't been easy. I have completely lost my dignity. the weakness crept up so fast! right from the start i was using a bedpan (number ones of course) because it was so difficult to get out of bed. I even had to start wearing 'pads' which is a flash name for adult nappies! They're nothing like pampers i can tell you that now. There's no cartoon characters changing colour just plain wholesale nappy! To top it off, now because i have lost so much weight i cant use the bedpan because it was too coarse and was scraping the skin on my back as the nurses were putting it into position, so this is where the loss of dignity kicks in. when your 'pad' needs changing you just lay on the bed like a baby with a nurse wiping you clean and replacing the pad with a new one - and that's number ones! Number twos started off as not too bad. Two nurses would help me get out of bed and place me on this weird seat with wheels, called a camode, with a bloody great hole in it and then id be wheeled over the toilet. easy! But then i lost the strength in my legs and the nurses couldn't get me in and out of bed onto the camode so now they use a hoist. Its a bit like a meat hook. You sit in this harness type thing over a bed pan until the job is done. The nurses do leave the room to give you some privacy but its still embarrassing all the same.
|my new Adams apple|