May sunshine

Wow! what fantastic weather... sunshine wrap round for days. Done wonders for my garden - as you can see...poppies grown from seed two years ago - I am very proud! Had a scare mid month with white blood count dive-bombing for some unknown reason. Spent a very tense 24 hours stressing that it had all returned - but after a long waiting session at the Haematology Day Unit in Guys (5 hours...) I finally got the all clear. Was I relieved and then some! Monthly clinic last monday revealed white blood count still a bit below normal, but has recovered somewhat from the mid-month drop. Consultants don't seem too concerned, infact I would go as far as saying "pretty damn gung-ho" - but then I guess my blood count means more to me than to them - I am very precious with my numbers - whether they are going up or down! Probably been overdoing it with Open Studios - have been getting very tired sorting everything out. Thank God for Luigi who turned up last a week and acted as an extra 4 hands, plus wonderful cook and mender of broken plug chain! Successful weekend just gone - and hopefully another one to follow - over 600 visitors into the studio... Hope all well right round the globe. Thanks for checking in. Next test June 6th.

progression

Met with neurological consultant last week. He was good. Very reassuring. Protein levels not up enough to be concerned with. I am being sent to St Thomas' next Thursday for a selection of scans (head, neck, shoulder, arm) to see if they can figure out what is causing dizzyness, and pins and needles. I reckon it all links back to my frozen shoulder and limited awkward movement. More bloody hospital - but least it shouldn't uncover anything disastrous! Spring has sprung and I am trying to sort out the garden. My clematis is about to burst into pink buds - climbed all up over my neighbours tree, so it should look quite spectacular when it blossoms. Slowly getting organised for the May Open Studio in Havelock Walk. Think I can do more than I still actually can. Still getting tired. But hey, I got one hellava' lot of curls on the top of my head, so I shouldn't be complaining. Next update will be around May 9th. Hope everyone is good. I know Cleveland Ohio, Sheffield, Italy, Australia, Ashford, and Highbury Fields are still checking in. Thanks for all your messages and continued interest - its great to know that people still read this. Happy Easter...not too many eggs...ciao ciao

back on track

Hi All - (if anyone is out there in the ether...) Had clinic yesterday and blood tests have improved; everything back on track and going up. Feeling better - though full of stiffness and aching joints. Have ENT and Neurology appointments next week - so hopefully will find out what "elevated protein" is. Have managed to organise some hydrotherapy for shoulder, which is still very stiff and limited in use - though improving by millimetres... My hydrotherapy companions are all struggling with bad shoulders or muscles that don't function. We crawl round the pool like bunch of ancient terrapins...we are given floats and rubber rings to push around -its unbelievably hard work! Lots of puffing and grimacing. I have no swim suit so turned up in a t.shirt and broadwalk shorts...oh dear, those days are long, long gone. Made my first trip out of town last weekend - Luigi was here (back in roma now) and we drove to Camber. Walked on rippled sand in our wellington boots. Seagulls, waves and rushing wind. Wide empty beach. Two dogs running along the low tide line. Six big kites skidding about the sky. Collected stones with holes. Luigi found large dead crab with handsome black pincers. Had mug of tea and cheese and tomato sandwich at the Kit Kat Cafe - sat at white plastic table and felt April sun warm my face. Blue sky with airplane trails. Laughed a lot.

snakes and ladders

Hallo to all in badhairday blogosphere (and cleveland ohio). I should be frolicking like new spring lamb (bounce bounce), but sadly am not. Got hit with mega cold bug last week which floored me and had me in bed all over weekend with raging temperature and hacking cough. Crawled into clinic this afternoon for my blood test - which has tumbled somewhat from the last lot of sparkling results. Now white count has dropped to 3.2 (4 and above is normal), platelets down and neutrophils too - they have slipped from 3.1 to 1.9 which in my book seems pretty dramatic - though still just within normal range. Consultant says it is result of cold virus and weak bone marrow. So he has slapped me on antibiotics and I have crawled back to bed. I am hoping that immune system can buck up soon and sort itself out and start to produce everything normal again ( I used to hate the word "normal" - now I love it). My appointment with neurological consultant is on April 12 - so doesn't seem like 'elevated protein' can be that problematic. Appointment with ENT department on April 11 but dIzzyness slowed down and pins and needles less. Steroid injection had some positive effect on shoulder - and I now have a bit wider range of movement - but still unable to put my arm above my head or out by my side. Exercise everyday and still physio once a week. Would love a holiday and some sun. Seems like Luigi been an age back in Italy. Japanese nightmare. Unfolding horror. Lost for words. How do you move on from that?

No peace for the wicked

Ha! no sooner do I think I am outta the woods free, when along comes another path to stumble down... got a call from the hospital 3 days after my last entry to say that given my symptoms of dizzyness and pins and needles they wanted me to have a lumbar puncture to check that my spinal fluid was ok. Now get this, my sub type of leukeamia can migrate into the brain (oh lucky me!)...so they where checking for cancer cells along with viral and bacterial infections. Had a few dark days. Luigi flew over from Roma and accompanied me to the hospital for lumbar puncture - painful procedure so very glad to have him there (my poor back is so covered in holes from bone marrow tests and lumbar punctures - they made three attempts before getting any spinal fluid out - and hit a nerve...). Results show no cancer cells, hurrah and phweee and praise to all the gods. However there is "elevated protein" - so my haematology consultant is now packing me off to see a neurologist. I am waiting for an appointment. Meantime I am refusing to get onto the internet to find out what "elevated protein" could mean. The internet is just the worst experience for trying to work out what is wrong. All it manages to do is just scare me witless. I hope they are just being thorough and there is nothing sinister going on. By the time I am finished with Guys I reckon I will have been through every bloody department. Talking of which, my mammogram is all clear. Time to get in the garden and do some early pruning. Rooney scored a corker last night. Shame Chelsea managed two. A presto tutti. x

Valentines Day Massacre

A win for the good guys! Those nasty leukaemic cells seem to have been flattened. Sparkling blood result with all counts back into normal range! I had a glass of prosecco last night to celebrate...and a quiet jump for joy. Residue problems still to deal with though - need an MRI scan for my back and neck due to constant pins and needles in my legs... plus an appointment with the dizzy clinic due to frequent attacks of vertigo (very alarming). Last friday I had to endure an extremely painful steroid injection for my frozen shoulder - which has given me a little more movement, but still unable to get my hand/arm over my head or out to my side. Due to a lot of armpit pain I am now under the care of breast clinic (had a mammogram yesterday - well sort of one, not possible to achieve it all due to limited range of arm movement) who are going to investigate further. So its still watch this space. I long for my continual trips into Guys to draw to a close, but I will be topping up my oyster card for a while yet... hope everyone good - I know a few people still read this blog! Thanks Tony, TM, Maggie and MIranda, Chrg and Loulou (hows nepal?) for messages - always great to hear from you. Will be back in two weeks with an update. Meantime I have snowdrops and crocuses in the garden. Spring just a moment away... Ciao tutti

January Results

Hallo Badhairday-bloggers! Hope new year is going ok for everyone. Am posting these results a bit late as the blood machine at Guys was broken, so didn't get till them 24 hours. Basically all ok. Levels have dropped a bit - but most still within normal
range. Only white blood cell is out of range - but only by a bit. Hospital inform me that counts "bounce around a bit" so not
to worry about things dropping - and they should bounce back up. Goddam hope so - "not to worry" thats a laugh! Bone marrow can take a while to get back into normal working routine after such a blast of continuous poison. I wish everything was higher and normal. But just have to keep walking-the- tight-rope... Next test, Valentines Day. Ciao tutti x