BACK TO THE BOX MARKED GO

July 2012: Relapse - new blog: http://hairwegoagain-tch23.blogspot.co.uk

FOND FAREWELL...

Hallo All (if there is still anyone left reading...)
I have now reached my first year in remission. Hurrah. Seems unbelievable; and I shiver in my boots when thinking about this time last year. But time moves on - and I am so happy to still be here moving with it! My bloods are a little low, but stable. Hospital are happy and they have upgraded me to two monthly clinic visits for the next year - if that is all still good, then it will be three monthly visits for the 3rd year and so on. I ache and creek and get tired all over still, but I guess that is still body in chemo recovery mode - they tell me possible 18 months to feel fully recovered. Shoulder still frozen, but much less so, can move easily up to 90 degrees then painfully up a little more. Still not able to put arm anywhere near above my head. It will happen. So I guess now the time has come to pretty much put this blog to bed. As I write this final post, Luigi and I are packing for a camping trip later this week - heading off to East Prawle in Devon - a big group of us, twelve in all, age from 1 to 63...We have a new tent, new camera and the best bit of of techno kit I have ever laid my hands on: ipad2. I have just bought an animation app - and am busy playing around and making mad things. My first 3 animations (mega short) can be seen on youtube - click on the following link http://www.youtube.com/animalgamation - all stuff I do will be under this name - so you can follow my animal doodlings etc through this. Check it out occasionally - maybe animation will be the new printmaking for me. Artwork and news of exhibitions etc can be seen at: www.tessaholmes.com - and I can be contacted through there for anyone who doesn't have my email address.
Wow, this really feels like I am packing my suitcase and signing out. Great. Time to get on my walking boots and head off to new horizon, just over yonder. Thanks to everyone who accompanied me on this trip. It really did make a difference to have you all alongside. Stay well and happy. And enjoy everyday. Whatever it brings. Big love to you all right round the globe. Ciao Ciao

HAPPY ANNIVERSARY

If anyone is left out there in blog city, here is short movie of my fantastic devon trip...AP thanks for the encouragement! Bloods down this month - had an unscheduled stop by at the Day Unit half way through June, after a swollen lymph node appeared - but they dIdn't seem too concerned. Monday's test showed bloods still a bit low, and I of course, am not happy with anything thats below that old plimsole line...but nothing to be done except keep on keeping on. Garden big on colour. Sun is up. Luigi been and gone and coming back again next week. Hope everyone good north and south and all the bits inbetween. PS. This time last year was the start of blog, chemo et al. X

BUONE NOTIZIE PER GIUGNO

Ciao tutti! Been a tough month - mostly pyschologically - think the whole ride is finally hitting home. So having to deal with various gremlins and terrors. Also got some kind of viral infection - so stressed too much. But finally, as in every "good" story, there is a happy-ever-after ending (well, chapter) and I can report on a very good set of blood results - with everything being up and over that borderline of "normal". So am feeling a whole lot brighter on all fronts. Last months Opens Studio was a reminder of not-to-do-too-much! I got wiped out and exhausted, which is probably why I ended up feeling unwell. So its back to "slowly slowly catchee monkey". Garden is filling up with summer colour and gives me huge pleasure. Working down in studio producing new stuff for a show. Off to Devon next week to stay on cliff top, north of Woolacombe. Be with a bunch of best and oldest friends. Big time looking forward to it. My first real break in 365+ days...I will wake to look at sparkling blue sea or soft grey fog. Lots of beach walking. Star gazing. Ticks all my boxes. UEFA Championship final. Well for those in the know, we know. No more to say. Hope everyone good. Photo of Garden Growing and Lazy Lilly. Love to all in both hemispheres. xx

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

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.