Back home /30 July 2010

Home again....phweee, cant quite believe i am writing this! Providing i dont get unwell, I am here for about 10 days, before having to go back and start all over...wont think about that right now. Can hear planes trains and automobiles...i was so locked away from all sound and smell in my box room. Footsteps on the pavement, bees, neighbours chatting, cat wailing(!) - garden full of summer chaos and colour. Grass needs cutting. I need to eat something. still no appetite. Lost a stone in weight. All a bit overwhelming but so good to be back in my house. will write more soon. ciao ciao tutti x

back again.....

thanks all for positive messages...very welcome! been without temperature for 48 hours...they took hickman line out on saturday night and so removed source of infection. now have canulas inserted into shrinking veins every two days. pain. too much of it. plus i have to have my blood taken everyday from said shrinking veins...i shrink visibly when nurse with needles walks into my room! f'ing shrinking.... good news is neutrophils are 0.4, so at last baby soliders starting to gather. lets hope they party hard.
i have unknown rash across my body. pain in one leg. having to have ultra sound and needle biopsy on swollen neck gland in neck. never rains but it pours. could do with a break! hopefully next entry will be a bit brighter. thinking of you all. love and ciao ciao...

saturday 24th july

Have got an infected line and spiked temperatures. Feelling seriously crap. Not a good time right now. Was hoping for home on Monday, but that wont be happnening. All I can write, will be back when better. ciao

from my box room: July 20th 22.44pm

Starting to feel stronger daily – though still very tired. No sign of neutrophils regenerating yet – but they reckon something should start moving by Friday – I hope so, as I am walking round the place feeling very “unprotected” I really need those white solider cells to get back into line and start doing what they should be doing. My liver problem still around, though responding to antibiotics. Seems it may be something called Veno Occulsive (?) Disease – which is a direct result of the chemo – blocking veins and bile duct of liver. I am waiting to see if I have to have a liver biopsy to confirm this diagnosis – but they cant do it yet as have 0 neutrophils, and the procedure would be too dangerous, but if confirmed then that will require a change of chemo cocktails. God it all sounds very complicated. I feel like I am being held together by antibiotics at the moment. A very delicate balancing act. I am having 4 different lots of iv antibiotics daily. Which means I am virtually married to the bleeping machine. Me and my bloody shadow! Finally the horror of everything is beginning to dawn – this week for the first time, it has started to sink in that I have got cancer – up until now I have always felt very disengaged / distant from the whole scenario – as if it has been something happening separate to me. But the daily reminded of chemo-head staring back at me in the mirror has forced me to take it on board. It doesn’t sit very comfortably. The thing that always happens to somebody else, has suddenly happened to me. I swing from being practical and pragmatic to feeling great dark terrors. I want everything to be ordinary, “as before”, but it isn’t. “as before” has been snatched away. My comfort zone bubble has been burst – and I am feeling the full force of the unknown whipping around me. Leaves me feeling naked, vulnerable and pretty damn scared. Too many “what if’s” lurking in my head. Its very easy to cave in and let the terrors run riot… “Bugger off” me thinks.

Sunday 18 July 22.50pm

First sign of some red blood cell regeneration…great news. Still being drip fed a sack of iv antibiotics for liver and gall bladder, but seems all that too is going in the right direction. Starting to feel a bit more like normal, which makes me realise how crap I have been feeling. Spent an hour with Luigi in the Lavender Square this afternoon. Fresh air, blue sky and summer wind rustling through fat green plane tree leaves. I lay flat on a park bench, sunshine on my face watching airplanes flying overhead while at ground level, pale brown pigeons with bright red feet scuttling about. Now looking like a bald headed eagle. Lots of hair gone, just patches left. Waiting for some clippers to shave the rest off. Tonight I sleep drip-free. Hoorah!

saturday 17th july 16.38pm

Been a difficult few days. Lots of needles and scans and medicines. Long story to cut short: I have an infected gall bladder plus a gall stone, which has had a knock on effect onto my liver and god knows what else. I seem to have been dripped up for the last 48 hours – I hate being hooked up to the machine…makes my endless trips to the loo so much more challenging, be pursued by a wheeling bleeping shadow…am writing this drip-free. I have about a 10 minute turn-around before being hooked up for 4 hours of blood. Low haemaglobin today. Thanks to all who give blood! Everything has been a bit tiresome to say the least. And am feeling very challenged at the moment! I am hoping for a better day today – no more interventions or problems or pain. Other than that, hair dropping continuously – I am sure with some heavy duty brushing most of it would come out, but brushing never was my strong point, so luckily, don’t have such an item on me. Will just have to moult like an old dog (or cat). My box room floor looks like the hair dresser has been for a visit… not much more to say. My London city skyline is wild with scudding clouds racing across the higgledy pig of roof tops. Red crane is still standing despite wind. And Southwark cathedral yellow flag is billowing out like a sail boat; perhaps if I watch long enough, it will sail away…ps...I have been singing to luigi this afternoon. He is still here.

saturday 17th july 16.38pm

Been a difficult few days. Lots of needles and scans and medicines. Long story to cut short: I have an infected gall bladder plus a gall stone, which has had a knock on effect onto my liver and god knows what else. I seem to have been dripped up for the last 48 hours – I hate being hooked up to the machine…makes my endless trips to the loo so much more challenging, be pursued by a wheeling bleeping shadow…am writing this drip-free. I have about a 10 minute turn-around before being hooked up for 4 hours of blood. Low haemaglobin today. Thanks to all who give blood! Everything has been a bit tiresome to say the least. And am feeling very challenged at the moment! I am hoping for a better day today – no more interventions or problems or pain. Other than that, hair dropping continuously – I am sure with some heavy duty brushing most of it would come out, but brushing never was my strong point, so luckily, don’t have such an item on me. Will just have to moult like an old dog (or cat). My box room floor looks like the hair dresser has been for a visit… not much more to say. My London city skyline is wild with scudding clouds racing across the higgledy pig of roof tops. Red crane is still standing despite wind. And Southwark cathedral yellow flag is billowing out like a sail boat; perhaps if I watch long enough, it will sail away, and I with it…ps...I have been singing to luigi this afternoon. He is still here.