What's that coming over the hill...

...its a New Year - a brand new, bright new, year! Greetings to all badhairday blog readers for a happy and healthy 2011.
I will be updating the blog once a month with blood test results, so next update will be around 17th January. Thanks for all your interest and support over the last 6 months. Its been a long haul, but hopefully out the other side now... and hair growing at last!
Ciao tutti. x

Festive Greetings

Hi...been a while since I last blogged - have been at home for 6 weeks now and everything recovering well. What joy it has been not to have to return to the Samaritan Ward for another dose of chemo cocktail - the further away from it I get, the more of a nightmare it feels... Had my first monthly blood test last Monday and everything still going the right way (up) - slow, slow to recover, but getting there. Life is beginning to take on some sense of normality - though still get whacked out after doing very little. Pushing myself to walk a little further everyday - putting on weight (no trouble at all) - appetite back with a vengeance!
Luigi back for Christmas (in bed with cold), tree up, candles lit, everything snug. Seems a bit of a miracle that this is all happening. The only thorn is shoulder/arm which is still causing great pain. Have seen orthopaedic consultant ("mmm, significantly frozen" he nods )who has recommended a a steroid injection in the New Year and a visit the pain clinic to try and get some relief. Bowen treatment seems to ease it a bit, but not enough. New Year just around the corner. Fresh start. Hurrah. Merry Christmas to everyone who reads this. Hope you all have a cracking time. Thanks again for your continued support and encouragement. Lets hope its a bright and healthy 2011 for us all. Jingle Bells.

moving on

picc line out...what joy - a free arm and no flapping pipes to hide under sleeves! Final bone marrow on Wednesday... and then onto monthly appointments for blood tests. Luigi and I did the Havelock Walk Open Studio this weekend just gone. God it was freezing, but managed to hug a radiator most of the day. It was good to do something normal for a change. Am exhausted now though! Frozen shoulder is hideous and really dibilitating. I am so hacked off that I am unable to drive or even do a shoe lace up.
Seems I cannot see orthopaedic consultant till January...so will have to chase the hospital yet again to see if the date can be brought forward. Meantime I will trust in the Bowen technique - have got another session this week. Waiting for snow.

almost there

Neutrophils 1.4 - so out of the danger zone! White blood counts on the up too - but may need blood transfusion on Thursday. Everything looking good apart from frozen shoulder - which has got worse and moved down my arm and into my fingers. Had
a physio appointment today - they say could take up to 2 years to clear up - have been given exercises to prevent "muscle wastage". All things difficult to do: dressing/bathing etc, cannot drive or use etching press. A right old pain; quite literally.
Last few visits to the Day Unit - hope to have picc line taken out next week, and my final bone marrow done... then I will just have to turn up once a month (for a year) for a blood test to check that everything is doing what it should be doing. If I can get through the year intact, the chance of relapse gets less. So now its just onward and upward...

going up

Friday: neutrophils up to 0.6 - white blood cells 0.9 and everything else going up slowly too! Some days good, some days exhausting and I am wiped out limp lettuce leaf style- but hanging on in there at home. I am hoping by next week blood counts will have gone up enough to not worry about getting infection and having to return to hospital. Taste returning slowly. Shoulder locked and frozen still - so a bit of a painful handicap which makes recovery slower - finally got a visit to the physiotherapist at Guys next week - so might get a bit of relief. Damp and grey - serious autumnal saturday afternoon. Needs crumpets... Hope all good for everyone. ciao tutti

sight for sore eyes

what with my white medical mask and my bald head, I get myself noticed walking in and out of the hospital - catwalk stuff!
still hanging on in there at home, still zero immune system, still in remission...hope everyone good. baci a tutti x

message from forest hill

Still at home! have managed 9 days so far - but today my neutrophils have finally dropped to 0.0 - so the long haul up starts from today. Day unit every other day for blood tests and check up. Monday had a double blood transfusion and platelets transfusion. Today an abdominal xray...god, always something!. The days in the day unit are long - get there for 10am and get to leave about 6pm. Exhausting. Am hoping I can keep myself infection free - but the world seems alive with coughs and colds and various nasties, so navigating a healthy path through all that lot with a zero immune system ain't going to be easy...Cold tonight so central heating up, and as I don't subscribe to Sky Sports, I will have to be wonderfully old fashioned and listen to the Manchester Derby on the radio (transistor even!)...moving on slowly. ciao tutti.

seeing wood through trees

big old sigh of relief...4 rounds of poison chemo cocktails /5 months of hospital and all the bleeping baggage that goes with it..summer long gone, autumn arrived, russet leaves and 4pm sunsets. This nightmare has an end in sight. Finally. Am at home chemo exhausted and laying flat out, but the joy of knowing that there is (hopefully) no more chemo to come and that maybe I am fixed, fills me like a ballon! I have still to loose all my white blood cells /neutrophils / and immune system will zero out in the next couple of days - so not out of danger yet - but hopefully will get through these next 3 weeks of minefield crossing without anything too disastrous happening. I am determined not to spend too much more time on samaritan ward...Luigi back home, cooking sausages with homemade italian tomato sauce, mash, and purple sprouting broccoli...cat curled in her basket, purring hard, washing machine tumbling, tv muttering, dark wild windy night outside. Sometimes the sounds of home are just perfect!
thanks for all messages and long enduring support from all followers around the globe - your presence has really helped me to get through this tough time. i really really appreciate it. A presto tutti. x

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..

home and back again

Hallo All, my apologies for being so slack and not updating blog for a long while…I got home last Tuesday 21st, feeling pretty fragile and weak. This last ride with chemo was really nasty, and took it out of me big time. Never mind, was fed homemade Italian soup (pasta e fagolli) and looked after with great care and attention by Luigi. Made a couple of trips to the day unit last week –and then in bed from Friday feeling a bit grim, temperature up and bouncing around the mid to high 37’s. mouth full of thrush and lost all desire to eat or drink. Visit to day unit yesterday for usual blood taking and they decided to admit me again. So here I am back in a single room (neutropenic – everything at 0.0 – which is probably why I was feeling rough at the weekend) being fed a range of antibiotics and pawed over by various doctors… I have a variety of odd symptoms including top half of my face covered in a constellation of red spots, a possible chest infection and subcutaneous (I think) bleeding in my legs – which basically is unexplained bruising…enough already! Carphone Warehouse have managed to be supremely inefficient and I am still without a phone – ordered a pay as you go, online – which did arrive within 24 hours of the order, but they seem to have a big problem with sending sim card – so new phone is useless…god how did we manage without them! Hope not to be in here for too long. A presto tutti. ciao ciao

stolen phone and chemo poison

Somethings in life stink. Having your phone stolen from your bedside while you sleep is one of them! So now I have nothing to contact the outside world with. pig pig and poke one! god knows who took it - likely someone who works here rather than patients. but who knows, could be anyone. Have had security round and cancelled my phone. but sim card gone, so a lot of precioius numbers missing.. bugger it. Almost worse than the phone stealing is the chemo, which has been violently awful - have been very ill with it - even getting a visit from the intensive care team the other night. I have two more lots to go, one tonight starting at 9pm - 4 hours of chemo poison pumped through my system, and then the final one tomorrow at 9am for another 4 hours. Goddam it, I will be pleased when this round 3 is over. I have been seriously knocked round the ring! Had a high temperature of 39.9, low blood pressure, huge aches, feeling very very sick, screaming headache - they have put me on steriods to stop swelling to the brain.... great. and the list goes on, but thats enough, or i will risk feeling sorry for myself! A presto tutti

bed available: 16/9/2010

going in this evening at six - and chemo to start round about 8... will get gritty sore eyes. Cant wait!
Luigi home and cooking. Ciao tutti. A presto

remission part two

Had confirmation this morning of remission from 2nd bone marrow. so everything going hunky dory. Solider boys just doing what
they should, and bone marrow producing all the right stuff. Should have been re-admitted today for penultimate chemo, but there is no room at the inn - hope there will be a bed available tomorrow. Only 5 days this time round, and less cocktails of chemo, just one this time, but, high dosage cytarabine which is pretty damn toxic. so will be monitered closely for heart / liver / kidney /brain /nerve reactions. gawd - and there was i thinking this was almost over!

waiting game / saturday 11th September

Still waiting for bone marrow result. Still waiting for admission date. Still got neutrophils and white blood cell counts falling. eek! Am very anxious about this - but doctors at the day unit telling me not to worry. Hmmm. Easy for them to say. Fast regeneration (which panicked me) and now counts seems to be reversing almost at the same speed (which panics me more). Well, at least I am starting to eat more, and putting on a bit of weight. Feeling better, but tired quickly and still struggling with aching joints - walking up and down Taymount Rise is quite a challenge these days - specially with a bag full from Sainsburys. Got to invest in trolley with wheels. Light grey rain falling over Forest Hill this early saturday morning. I guess it may be like this all weekend. Sunshine and 28 degrees in Roma. sounds good. Hot yellow zucchini flowers still bursting forth in garden, morning glory in abundance, agapanthus, lavender, sweet peas and punk-pink geraniums still all hanging in there and looking good. Football match this pm (Utd playing at Goodison Park - and I know there are some utd fans reading this...) - and a scrabble party too...
A presto tutti...

ouch

ouch...bone marrow was very uncomfortable this time - doctor made a big hole, which bled all night...results some time later
this week. Had 14 vials of blood taken too; they are looking for possible rheumatoid arthritis as I have a pile of aching bones and joints, which seem to be getting worse than better (hopefully just chemo reaction). Neutrophils and white blood count dropped since last week. Hope these things do naturally fluctuate - and that it is not an ominous sign. Am a bit of a limp lettuce at the moment, with temperature up and appetite gone. Luigi back in rome - so just me and the wailing cat. Time to party! Ha.

biopsy time

Have a bone marrow biopsy tomorrow, Monday - and back into Guys for Round 3 of chemo on Monday 13th. Everything crossed that bone marrow result is good and that I am still in remission. Tenderhook time... Life is turning slowly and feeling more normal everyday - though still get tired easily and lots of aching bones. Luigi and I went to British Library to see the Magnificent Maps exhibition - wonderful giant wood cut map of Venice...looking forward to getting back there some point soon - tramping through the narrow streets, riding on the vaporettas and watching that big wide sky over the lagoon. Have made several visits to the studio and may start on some work later in the week. Boring old blog, but better than having to write about infections and bleeping machines and chemo cocktails - that will all be on the menu too soon anyway. Hope everyone well - september: back to work/college/school...

September 1st

Neutrophils .4. Sun shining. Can eat what I want! hoorah! Seems everything has shot back to normal at double quick speed.
This is slightly alarming as I have been told by Doctors that nature takes 2 weeks for the immune system to kick back into gear again once it has been wiped out to zero - seems my nature has managed to do it in just over a week. Now of course I am panicking that there is something wrong (not given enough chemo?)- as all seems too good to be true. No-one at Guys can give me an explanation as to why regeneration has started so early. Nor it seems does anyone know when my next round of chemo is starting or when I have to have bone marrow biopsy to check if I am still in remission. My personal clinical specialist is on holiday and has left no instructions...so I am feeling a bit anxious and uncertain. Plus yesterday young doctor (cant be more than 22) in Day Unit decided that due to good blood test results, I didn't need to return for week - so was sending me packing, but without checking out my medications (of which i have plenty). It was only me querying stuff and telling him I was going to run of of supplies, that I ended up with renewed prescriptions. All a bit lackadaisical. Rode on the new east london line overground to Whitechapel this afternoon, for a trip to Atlantis (art warehouse), but they had run out of all I needed... Brilliant train line though, linking south east and north east. Luigi going back to Rome next Tuesday, so will have to start my solo living again. This will be hard, as have got very used to him being here full time for the last couple of months. He will however be back for the next round of chemo (whenever that is!). September sun in forest hill, and still my garden bursting with colour.

bank holiday

Been home a week now. Great. Visit on Friday to Day Unit showed neutrophils suddenly shooting from nowhere to 0.9
so immune system starting to crack on - hope by tomorrows visit (tuesday) it will be back to normal levels. Feeling good, but lots of aching bones and get tired quickly. Have made a couple of trips to studio to "potter" but not started any work there yet. What lousy weather this past week, grey and buckets of rain and wild winds. Today there is blue sky and sunshine, but not enough to ripen my green tomatoes... tony thanks for reciepe, sounds delicious...am heartily sick of my limited diet, so looking forward, big time, to be able to eat properly again! Dull blog, not much news to say except enjoying getting back to normal and trying not to think of round 3 in two weeks time. Rip it up and start again. Exhausting! Have good bank holiday all and lets hope for a bright and sunny september...

try again

Got back home on Monday evening. Collective sigh of relief. Taking it easy and enjoying the view! Hopefully I can last now till neutrophils start to get back to normal - but running on no immune system at the moment - which is a bit scary - and i am being super cautious. Am off to spend the day in the haematology day unit today - not sure what will happen apart from having usual round of blood tests - maybe will get home sooner than expected - but am loaded up with ipod and short story book to pass the hours away. Garden still romping with colour: big fat yellow zuccini flowers this morning and a handsome show of Morning Glory.
Thanks for all comments - good to hear from everyone. A presto tutti.

short and sweet

home lasted just 48 hours. got very sick on wednesday night -spent thursday in the haematology day unit tied to a drip and sleeping. got sent home at 6pm, but by 8pm had a temperature of 38 and taxing it back to Guys again. Readmitted to a single room (thank god for small mercys!) and dripped up again to antibiotics by 9.45... Neutrophils dropped back to zero, so immune system has to restart all over again. It is now saturday afternoon. I am listening to football and having a blood transfusion. Havn't been off this drip since thursday night - antibiotics, saline, potassium, calcium, blood, and generals fluids. Thankfully my line still hanging on in there. Looking grey and thin (and bald). This second lot of chemo has been tough. They have still to identify what is infection. But have had no temperature since coming back in, so hopefully might get back home again the earlier part of this week. From my new window I can see directly across south east london: east dulwich and the road that rises up to home - I can see all the trees of Forest HIll and a local landmark, the mobile phone mast which stands just above Horniman Gardens...Walcott scores for Arsenal. ciao tutti. have a good weekend all.

Home again, home again, jiggidy jig...

Phwee, made it past the post in one piece and am now at home. Joy. Physically feeling pretty chemoed-out, body swimming in poison, lacking in energy and spirit and feeling way too fragile. Not me really. Miss just getting up and going. How good that was to be able to do: get up and go. How precious. But just like Joni Mitchell sings, "... you dont know what you got till its gone"... Fingers crossed that this chemo 2 is skewering the munching lueki-buggers like no tomorrow. My garden still awash with colour, bright red sweet peas and and dark blue morning glory romping all over the place. Gives me real pleasure. I stand out there in the morning and drink it all it. Perhaps in another life I should have been a gardener. Hopefully get to see some of you in this more normal environment, instead of being glued to a hospital bed. Thanks to all of you who made the trip into Guys this time - Jules great to see you and x for my box of goodies (wearing socks as write this). Cracking sunlight just split through heavy blue grey clouds over forest hill roof tops. Sharp and brilliant. Luigi watering the garden. Plane flying overhead on its way to Heathrow, Radio 4 muttering, lazy wasp buzzing against the window pane. Easy.

Friday 13th August. Lucky.

Seem to be drinking chemo at the moment. Knocking me flat over the head. Will be glad when this round 2 is all over. But, so far so good. Nothing untoward happening. Seems like autumn already outside: grey and overcast and looking cool. Lights on the cars still at 8 o’clock. I hope there will be a turnround and some summer comes visiting again. I realise my treatment will take me through 2 full seasons, not finishing till November. So summer and autumn colours I will be watching through these hospital windows. Last night chaos. So much noise, machines, bleeping call lights, lights left on, patients calling…very short staffed, mostly with agency nurses. The place does seem to fall apart a bit. Lisa, thanks for offer, but got earplugs! Though stupidly don’t use them. Dull blog. But brain blunted! Just really to say hallo to all, and hope everyone good and having a hottish summer and fun. Back soon, ciao ciao tutti.

Guys Wednesday 11 August 5.30pm

Back into Guys – Sunday night was a bit like preparing for return to boarding school… Two days worth of chemo and getting that familiar wacked over the head feeling… sleeping a lot. Have had a picc line put into my arm, which they can take blood from and give me anitbiotics and chemo, so fingers crossed that doesn’t get an infection. Couldn’t bear more needles and canulas. Best news is that the I have got cytonegenetic remission. This is the complicated medical stuff, but anyway, its all good and everyone very pleased that I have had such a positive response to chemo. Including me. Big time. Am back on the open ward which is so very noisy!. There are workman on the floor above drilling and banging from 9am – docters and nurses rushing around, endless bells bleeping and radios/tv blaring. Not exactly restful, but I seem to have an amazing capacity to switch off from it all. Just the drilling that sears right through… Managed to get out for a short walk with Luigi this afternoon. Good to feel real fresh air and hear the sounds of the city. Miss all things home: Lilly, food, garden, views etc, but hopefully this time round I wont be stuck inside for such a long haul. Thanks everyone again for comments and emails. Great to hear from you all. Back soon. Ciao Ciao

RESULTS / PART ONE

Finally got some good news from hosptial yesterday - in simple terms (medically its just too damn complicated!) according to my bone marrow biopsy I have had a good response to chemo - the first lot of tests show that I have less than 5% leukaemia cells in my bone marrow (started of with 40%) - so chemo has been doing a good job of smacking the little buggers hard on the head. There is a second result to await, which is quite important and to do with cytogenetics - ie the chromosome make up of the leukaemia cells - for a really good result, the chemo needs to have had an effect on this too. At this stage I get a bit confused, as it gets really scientific/medical and I am lost in it all. Apparently I have 4 cytogenetic abnormalites, which puts me into the "intermediate risk group" - not as good as "favourable" (better chance of recovery) but not as bad as "adverse" (worse chance of recovery). Most aml patients are in the intermediate risk group. For full remission the cytogenetic test has to be good too. Phwee,
talk about hurdles to jump. Anyway, jumped one at least, which is making me feel more positive - and ready (as one ever can be) to start round 2 of chemo on monday. Have started to eat a bit more, but still slow to put on weight, despite endless snacking on chocolate cornflake bites. But feeling stronger everyday and have so enjoyed just being home - although nothing feels quite the same, as the leukaemia cloud hangs over everything - and that definitely alters my internal world - and has a knock on effect onto how i view the external. I know nothing will ever feel like it was before June 24th. But I guess now that's the big challenge.
Life sure does move in mysterious ways...have a great weekend all. next blog will probably be from samaritan ward. What larks Pip!

Wednesday morning August 4th

Am enjoying my time off for good behaviour. Great to be at home and pottering in garden watching butterflies and bees. Have walked down to the studio a couple of times and started sorting stuff to make it look like I am still working there. So far temperature has been kept down (back inside if it goes up..), but still feeling pretty fragile. Had a hosptial day visit on monday
and good to report that neutrophils are now at a whopping 4 (normal is anywhere between 1.5 and 10) so can now eat anything I like. Unfortunately still pretty much off food though. and still loosing weight, despite snacking on chocolate things and buttered malt bread! Today I have full on hospital: another biopsy on the lump on my neck (though doesnt seem to be there any more, but haematology team are insisting) and a bone marrow biospy. Both these are bloody painful, but very important as they will give an indication as to whether or not first round of chemo has pushed the leukaemia into touch, and therefore will decide on how the treatment continues. I am keeping everything, and more, crossed. Psychologically tough if I get a bad call. but will just have to deal with it somehow. Luigi being usual rock, plus cooking, cleaning, gardening and just all over wonderful looker-after. Has been lovely to see a few friends over these last few days. and hope to see a few more before "return to guys". Had a great massage from Amanda yesterday evening, which inspired a bit of an appetite and even a swig of beer! and thanks to Wayne for constructing a clever "stair cage" to keep Lilly out of upstairs. She doesn't like it, but it means half of the house is cat free, which is essential for next time round. Thanks to all of you for your lovely messages - its great to hear from everybody - keeps my spirit high (and it
does flag occasionally!) love to you all. A presto, x

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.

fall out...

/Users/elephant7/Desktop/Photo on 2010-07-14 at 20.40 #2.jpg

fall out: 14/07/10 20.36

Here goes the hair, bunches of the stuff…..eek!

Guy's Tuesday 13th july 21.04pm

Hallo all and sundries. Tired tonight, so not in much of mood for writing.
Blood transfusion today x 2. Plus 3 hours worth of antibiotics through drip.
Total of 7 hours hooked up. Don’t like this; “bleeping” machines (literally), too close for comfort…looking at incredible soft grey tangerine-dream sunset drifting across my city skyline. First two red-eyelet lights of Nat West tower are shining out – the purple blue hat will lite up about 10pmish I reckon. Would like to be on a Cornish beach, listening to atlantic rollers, sand between my damp toes and poking at a driftwood fire. One day. Night all.

sunday/monday july 12

Brava Espania! Have been filled all day with i.v. antibiotics and blood and platelettes and saline drips. I have got an hours break before getting tubed up to the drip again for tonight…things seem to be happening thick and fast at the moment, too much to remember, which at least gives you guys a break from all medical ins and outs and roundabouts. Weekend at last is over.

Saturday 10 jluy 19.20pm

Crap! Succumbed to temperature. Now am receiving 5 days of IV drugs and 10 hours of saline drip being dropped into me. In bed all day. But trying to watch 3rd place play off. Waiting for a chest xray. They don’t to things by halves in here! All for now. Ciao ciao

`friday july 9th 19.30pm

Finally finished my chemo shots this morning. Hoo-bloody-ray! Now I am confined to my box room (it really is) for another 10 days or so. I am keeping all bits of me crossed that I don’t get infection. So far so good. Just need the neutrophils to gather force; and some good bone marrow wouldn’t go amiss either. Luekaemic free. I have been watching blue sky all day. And a big red crane – close enough to my window that I can see the shape of the operator inside. Thanks to all for the emails, sorry but cant respond to any, as my “sending” facility seems to have packed up on me. So can only receive. But very welcome they all are. Luigi has now taken to using my camera and photographing his journeys around Borough Market, plus giving me photo updates on the garden and the studio. This is all great, and gives me a colourful glimpse of the outside world. He now seems to be feeding Lilly fresh chicken everyday. That cat is going to be such a nightmare when I get home. Never has there been one so spoilt. Discovered that Paracetamol made me feel oh so much better this afternoon – my mallet / glue feeling passed off for a bit and I could laugh. I am haunted by nightmares – which is not much fun and wake up shouting and pushing things off me. Last night it was witches and monsters coming through the wall. Foof! I wonder what is going on in my psyci. Spelling not improved either. A domani. Ciao Ciao tutti. Baci.

thursday 8th July 20.55pm

Hallo all. Am now in proper isolation. Very tired. Days are long to get through. Want to be in my garden with the hose pipe and just doing ordinary stuff. Feeling a bit holed up to say the least. Have now reached my “Tone Zone” 68 kilos. Which is a loss of 4 kilos. Fantastic; but I can think of better ways to loose weight (no more obese torso Kellie!). enjoyment for food is gone. So to any kind of liquid intake, but having to force fluids down me. Still not got an infection… will I be one of the 10% who get through this without getting ill? Not up to writing much, so signing off. Still hanging on in here. Think I want spain for the World Cup; want most a good game. A presto tutti , XT

Room with a View

As my neutrophils are falling down I have been moved into my own room. Thank god for tumbling neutrophils!
Compact and square with a stunning london city skyline view. I can see St Pauls, Nat. West Tower, and if i press my nose flat against locked window pain i can see Tate Modern - waiting to see it's purple collar lite up tonight. Lots of cranes bent in gymnastic fashion - some startling positions! Just had another chemo shot. I am now moved onto shots as opposed to large red cocktails - thank god. Am still jiggling with pills, but so far they have done there job and have been completely anti-sick hurrah
(another room 101 nightmare). HIt some very low blood pressure levels today 60 /49 but now they have gone slowly back up, so feeling a bit more awake. Luigi has just called me from Gatwick, a day late, but finally here. And that so gladdens my heart. Chemo rattling round, and my head a bit suddenly all over tired. so stop the writing now. Added some pictures (clearly bored, and still unbelievably vain). Ciao Tutti. A domani.

Guy's Room 2 New View

GUYS USA INDEPENDENCE DAY

First blood transfusion today.. will have to get used to these. However, think they could figure a better time to give it to me – 4 hours worth starting at midday, which means I get lunch served up half way through being pumped full of A positive (never kinew I was A positive – but it don’t half sound good: A POSITIVE. Never thought I would feel so bright about my blood count group!). Have to say, didn’t feel much like eating. I have to try and desist from all my squirming squeemishness. But blood, needles, etc etc is kind of my room 101. Tough I guess. Will just have to learn to live with it. More cocktails of chemo too, so pretty tired tonight and vague stomach pains lurking around the edges. Though I am hungry now and just asked for baked beans on toast (neutropenic diet), but doubt I will get such a delicious plate served at 10.10pm….Hey Charile got a 2.1 at SOAS and Fin about to go discovering Morocco and still waiting to hear from Channel 4 re Terry and Mike (free plug Fin)…Good lads – best boys, very proud of you both. Despite flattering words from those of you who have seen the hair cut, it is short and dykey and hurtles me back 20 years or more…whooo, aint life one big old merri-go-round. Short bloggett tonight (like said hair cut) – need some beauty sleep.. Ha ha! Have a good week everyone. Ciao ciao.

guys day 6

Gutted that Ghana missed out on an historic win last night – I was wanting to hear the singing from Dalston to Durban. The world would have sung, “sing sing Africa” – ahh but there you go, that’s football for ‘ya…can be such a cruel and unfair thing. Not sure what my day tally is, 5 or 6 I think. Best day of all today, feeling not quite so smacked over the head with mallet. Mel came over and I fell into a wheel chair and we did a kind of sainburys bad steering shopping trolley down the hospital shop for goodies. Whence I managed an Andy and Loo interpretation (little britian) so while mel went one way round the shop, I hopped out and went the other way (and managed to locate barley water)… we sat for half an hour in sunshine and summer breeze, surrounded by lavander bushes and watching a wedding going on. Mad woman with pink mr whippy thing stuck to her head, full of what looked like butterflies bouncing on springs…Jeez, wedding outfits.. wedding hats… whats the deal?
A haematology doctor tried to draw me pictures of whats happening to my cells, and how they are all getting stuck together in the wrong order. I was a bit confused, He confessed coloured pens would have made for clearing understanding. You bet! I am told that the leukaemia is quite early in its travels…which cheers me somewhat, but I also know that once you have it, you have it, so not sure if it makes that much difference. Good thing is I am still reasonably healthy and strong –which I will take in my favour. Still totally gobsmacked at how this has all come about. One minute I am flying down to the studio to work – and the next I am sat on a hospital bed surrounded by consultants telling me that I have acute myeloid leukaemia. I just went blank. Nothing hit home. I just remember saying, “right, ok, what happens now”. All this has happened now.
Not a blogger I am afraid, so ignorant as to how I can comment on your comments. But thanks for them – all round the world, from Sydney, Cape Town, Italy, Peckham and beyond. Please know everyone that all your messages are a real spark to my day – it means a great deal to read your words, short or long. They are really appreciated, and I believe will play a huge part in making my recovery recoverable. Thanks specially to all at LCC, piggy backing off each other! If anyone can put up instructions (Dave Sims maybe?) of how to become a follower and add comments, for those of us whom blogging is just too much of a complicated procedure to get head round, that would be great. I am heading of to bed. Luigi heading back to London tomorrow. Crystal Palace beacon still shines. Some poor woman has been weeping in pain for the last 3 hours, 2 beds away. I hope she manages to get some peaceful sleep.

guys day 4ish

Didn’t blog yesterday as I felt I had been hit over the head with a mallet. As well as varying chemo cocktails I am constantly have to swill down endless tablets: anti fungal, anti sick, anti-something or other, phosphate, calcium, oh yes, antibiotic, . shake rattle and roll. Hospital life is not one to hark after, though the staff are amazing, very calm friendly and unphazed by anything. I have a hickmam line set up in my chest – I look like a spare part for a washing machine. Those of you who don’t know what one is, I’m afraid it’s a google search, as too long to explain, but basically all things that have to go in to me (chemo / medicines etc) or come out of me (blood) are taken directly through the hickman line. They say it will eventually become my best friend. Ha!. Saves on endless needles though. Enough of medical information, it’s a bit too much detail, specially for the squeamish, which includes me.
Thanks for responses to blog. And too all of you who have stopped by to visit. I am still pretty much in the dark as to what is going to happened over the next few weeks. My guess is I will feel worse, more mallet hitting, as the chemo progresses. Don’t care really, as long as I get the result. Wimbledon and football. Normally I would be in seventh heaven, but the grading has slipped down to about 4th! Another blogget soon. Love to all who read. Ciao ciao.

bad hair day: guys day 2

been moved from single room to ward. hopefully not for too long, as it busy and noisy and full of bells and buzzers and awful moaning and groaning, which freaks me out. I can see LCC from the window though - and a huge slice of south east london sprawl - crystal palace is lite up now. bright red beacon, showing me the way home (i wish)! lots of chemo today, and feeling pretty ropey. tired and a bit wrapped up in my own misery - which wont help me. also had brain scan (to finally check something really IS there) - and more needles and stuff. uch. sorry, this really is a bit of a moan. i am signing off and hoping that the night passes with comfort for everyone on the ward. will bash out a few words tomorrow.. ciao ciao.

guys day 1

right, first ever blogget. so bound to be full of errors. and terrors.

just had my first chemo cocktail. strapped up to pipes and tubes

and bleeping lights. got ten days worth. now feeling ok. but they

say i wont be later on. ahh great. luigi did me an "armani" hair

cut this afternoon... hmmm. well, at least i wont be waking up

to a pillow full of locks... not much left to fall out now.

(some of you will remember the look: circa 1987, oh dear!).

wrapped in medical world so quickly, today included heart xrays /

fine needle biopsys / "bloods"/injections etc etc. Hope my garden

caught some rain. Not sure how blogs work - so will post this and see what happens.

in the end i guess i might be just talking to myself. whats new...

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