hurdle jumping

"Cytarabine really doesn't like you does it?" observed the night duty nurse... I am sitting in bed with bright red swollen lollipop cheeks, puffy hands and feet and huge red spots over my torso, back, chest and arms...oh lovely stuff! Least, with the first infusion (2 and half litres worth) I didnt get sick / headaches/ fevers etc like last time - they are filling me up with steriods and hydrocortizone to fend off nasty side effects... I have had a 24 hour break and am now just about to be strung up for the next batch, which will be finsihed by 2pm this afternoon - a rest for 12 hours, and then the next bag of poison. By 2am (sunday morning) I will have finished this second infusion. The last, very last one, on monday morning, just as most people are trundling into work - oh, how I would prefer to be trundling into work! Have a good weekend - halloween an' all that, and clocks go back tonight! A presto tutti. ciao ciao.

final dates...

Spent the last week very slow: rebuilding blood counts, trying to put on some weight and sleeping lots. Sandwiched inbetween all that, visits to the day unit... today been given date for final chemo (hoo-bloody-rah), which will be on Thursday - plus bone marrow test on wednesday morning. At last. The end is finally on the horizon. One more bout of poison. If all goes to plan, my litres of chemo will be administered over 5 days, so I should be outta the hospital by next monday or tuesday - then wait for neutrophils to drop and immune system to fall to ground zero, and then the long haul back up. One more minefield to cross. Hopefully there will be no dramatic temperatures or infections, and I wont having to keep rushing back into hospital at midnight.. I have inner ear viral infection - so get horribly dizzy, especially when lying down - but hospital dont seem too concerned. I am just chalking it up as yet another complaint on my ever increasing list! I hope to God all these ailments will pass soon and be forgotten. Bright autumn day. Red russet leaves and sharp blue sky. Lots of planes criss-crossing over London, leaving skies full of lingering vapour trails. I dream of somewhere far away. Hope everybody fine and dandy - I am wondering what weather is like in sydney / singapore / italy and ohio... ciao tutti

back on track

Neutrophils back up and running - so too all other blood results. At last starting to feel a bit like normal again - but very tired - so lots of collapsing on sofa! A short visit to studio yesterday - and a bit of gardening in order today, while there is some soft autumnal sunshine. Will find out on Monday date for final chemo. Dreading it. Luigi back to Italy on Tuesday, so will be living solo for a week or so. Hope everyone good and enjoying fine weekend... ciao tutti

sent home

...Got sent back home yesterday evening with a box full of medicines. Still no neutrophils, so still walking the minefield. Body ravaged (!) from last chemo and taking a long time to recover. Frozen shoulder freezed hard. Have been given physio exercises, but agony to do. Still waiting for mri scan... yawn. Hopefully can now stay at home and quietly rebuild before final treatment. Autumn arrived in my garden...though still individual splashes of colour and morning glory still glorious, but much smaller flower heads. Squirrels everywhere. Next door holly bush heavy with red berries. Trees starting the big shake off...crows cawing. Big grey skies sweeping over south east london. Love how autumn smells. Big match tonight.

in out in out and shake it all about

Well, dear reader, Monday was a barrel of laughs! 8 hours sitting in a chair in the day unit - finally given a platelets transfusion at 5pm...left feeling a bit weird. home and straight to bed with shivers. 11pm spiked a temperature of 38 - midnight dash to hospital and sent to some unknown surgical ward (no beds available in samaritan). laid up there for 2 days, completely isolated from the world, being looked after by baby nurses who knew jack-all about cancer/haematology - ward not equipped to deal with my sort of problem - so consequently felt very vulnerable. Finally got a bed on Samaritan Ward yesterday (Wednesday) evening - spiking another temperature - so now am back on I.V. antibiotics and will be here till Monday at least. Oh gawd, seems I cannot stay away from this place. Body clearly very weak after the high dose of chemo and succumbing to infections - though this time round the problem may well stem from arm/frozen shoulder - at last will be getting to see a physio therapist tomorrow to get an expert opinion (I hope) as to what is going on inside said arm/shoulder. Am exhausted and chemo coloured. rashes all over the place. eyebrows going, eyelashes too. Cytarabine is some heavy duty chemo thats for sure. Everything still at flat rate 0.0 - one little jump of 0.1 neutrophil on monday - but went straight back to 0.0 by tuesday and staying there. Lots of blood and plateletes
transfusions this time round as body and bone marrow is struggling to cope with the chemo side effects. Least I am in a room (with a view) on my own, so dont have to put up with ward noise and restlessness. Hope by next week I will be recovered, will have a strong gang of neutrophils jiggling around inside of me and will be at home and seeing some of you. My world is deflating rapidly to just a small medical box. and I need INPUT! Sian, hope Wacky Races was successful and not too soggy...200+ students, does that mean a whopping fine? Hope everyone is good right around the globe, sydney, singapore, italy, peckham and beyond.
Love to you all.

home, just

Came home on saturday...great, but been in bed most of the time since then. my temperature always seems to go up as soon as I get to forest hill! Struggling big time with very painful frozen shoulder which has been a running problem since the beginning back in June - however now becoming really debilitating. Especially at night, when it gives me big time jip! Oh god, I am just becoming a list of moans. Now waiting for taxi to take me to day unit for usual catch up on bloods etc (hope to god they don't re-admit me again), but taxi dont come due to road works and underground strike...so Luigi and I twiddling fingers and waiting patiently. Real autumnal morning, damp, flat grey sky, trees starting to turn colour...taxi here

treading water

blimey! who would have thought that a routine visit to the day unit last monday, would have resulted in this long yawning week stuck back on samaratian ward....not only am still here, but for the last three nights have been back on the ward, as had to give up my room for someone in a worse state ythan me - so have been surrounded by bleeping machines, call buttons, moaning patients, and the general restlessness and crash bang wallop of this place. I am exhausted. Supposed to have been discharged on Thursday, but Dr's wanted to keep me in for 24 hour observations on oral medications (as opposed to I.V.ones)On Monday they discovered a shadow on my lung from chest xray - indicating earlier stages of pneuomia (god knows how its spelt...), but with heavy duty antibiotics seems to have slapped that one on the head - then today just before I was due to be discharged got violent pain in my stomach - which was probably galstone reoccurance (great!) and resulted in my having a shot of morphine - wow that stuff works wonders - but was decided to keep me in for yet another 24 hours observations - all my bloods are flat out 0 - which is why I guess they are being so careful. My mouth tastes like its full of All Bran dust (what you would find at the bottom of the packet) and I am constantly swigging on barley water. Oh my! Hope very very much to get out tomorrow. this place sending me stir crazy. I have blocked email - as have been sent huge files that cant download - so sorry cannot respond to anyone who may have written email. I have temporary mobile number: 07598 482321 if anyone wants to send a text!. Thanks all blog-readers for messages - Tony, so wish I could have joined the three of you last night. I love your menu descriptions. If I am lucky I might get a late night bowl of cold weetabix here... a presto tutti..