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.