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.