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