SUNSHINE AFTER THE RAIN

Ciao Tutti,

Cant believe its over a month since I last posted on here. My memory is a bit shot these days and I am sitting here wracking my brains trying to remember whats been going on...Good news is that my last visit to HOP Clinic in the beginning to May saw my BEST EVER blood results. Everything sitting comfortably in the mid range of normal. What joy to be normal! I was so thrilled I could have kissed my consultant. I bounced out of Kings and sang all the way home in the car, with the roof wide open.  I put a lot of this down to my new exercise regime at the gym.  Its really helped control my fatigue levels and given me more energy, made me more steady, helped me to sleep better and best of all I am starting to shake off all those hot cross buns and other goodies that I was eating too often.  Trouble is I am too self-competitive. I initially started doing 20 minutes gentle work out - then it went up to half an hour and started to include push-me-pull-you weight things.  Each day a little more, upping resistance levels on the cross trainer and bicycle and pushing heavier weights (don't be fooled, 18kgms max for me!) Suddenly I was doing an hours workout. I was dead chuffed with myself.  But my bones-all-over started to scream 'enough'!  My knee kicked up a big fuss. I found myself hobbling down the hill to the gym.  All of me ached. So I stopped for 5 days.  Have now resumed a less strenuous half hour.  Clearly I still think I can do more than I actually can.  Recovery is a damn slow process. But I'm getting there. Oh, and steroids down to 1mg.  Almost finished!

Cut all my chemo curls off a few weeks ago.  I don't really like short hair, but it was psychology an important step. Looking in the mirror was a daily reminder of the whole transplant process.  Now they have all gone, whats left is mine! A bit circa 1983 (wish I felt circa 1983 too) but it will grow. Much darker than before. That is a result of chemo/radiotherapy.  Enough of hair.

My garden is full on colour at the moment. Everything coming up roses (literally). I go out everyday with a mug of coffee and chatter away to lavender, jasmine, allium, poppy, clematis, potentilla et al (my neighbours are used to my eccentric ways). May has been a really good month for sunshine and rain and everything is blooming. Unfortunately so too are snails and slugs. They are a never-ending battle.  All plants have had a regular diet of Miracle Grow this spring which has really helped with prolific flowering (perhaps its helped the slugs too - they are enormous).  I open the garden doors and get a heady whiff of jasmine in the morning.  Heaven.  On gardening theme, went to Chelsea Flower Show yesterday with Lulu and Julian. First time ever. Bit disappointed - thought it would inspire me with ideas.  Sadly not. Unable to walk though 'show gardens' - you have to stand behind a rope and stare along with heaps of others jostling with cameras and mobile phones... much better on the TV. The place was also heaving with a jumble of stalls selling really terrible garden sculptures (I mean, just appalling): giant sandstone horses, life-size wire elephants, huge pottery lions (it was a jungle fest), towering glass alliums, twee little owls and robins and pots and planters - the list is endless. Bought a new slinky green covered garden hose (no kinks, it promises!) but decided against a packet of crisps for £1.90.  The large marquee had some stunning flowers - but I was knackered but the time we got in there.  Iris, banks of sweet peas, roses, and some fantastic vegetable displays.  Despite failure to inspire, was glad I went.  Flat out exhausted by the time I got home - slept solidly for 9 hours. First time I have done that in 18 months!

I have started a print course over in Blackheath. One day a week, just to get me back into the groove of work and printmaking. Thats another big step forward.  Also underlines how much I miss my studio. Am on the lookout for a new space, but nothing appearing. I know I will have to set up a mini-workshop in my garage. I tried to do some work on the kitchen table the other day. Nightmare. Ink everywhere. Rollers and frying pans don't really mix.

Another first this month was a train and tube journey (have not travelled on public transport since July 2012!).  Amazing how something so simple one just 'did' without thinking about it, now becomes a hurdle to leap, a cross to tick off (can you do such a thing?) a goal achieved.  It was exhausting, but manageable. The Chilterns looked beautiful under blue skies and big Mr. Whippy clouds. Next on my list is a two hour drive down to Rye. I hope by next post that will be another tick to cross off.

Some of you have been asking about Luigi. I know I have not written about him for an age. Which is sad. I have not seen him since October - and miss him big time (but have got my independence back!)  We are in regular, almost daily contact by phone.  He has had a mountain of work problems. Moved from Venice to Milan. Looking for a new gallery. Been ill. Been ill some more.  I am keeping my fingers crossed that he will be over during the summer.  Its almost two years ago that I went out to meet him in Venice, just before my treatment started.  I wouldn't mind to be on a vaporetta right now, splashing over the Guidecca canal, off to have lunch with my dear friends Paolo and Marina on their roof top terrace... One day.

Va bene. Hope everyone is good.  As usual, thanks for all your supportive messages.  There was open studios at Havelock Walk last weekend.  I met a number of people whom I had no idea have been following this blog regularly.  So to you all, a big hallo and thanks for your continuing interest and support on this road to recovery.  I am really touched.  And to other unknowns around the globe, thank you too for taking the time to read.  Australian cousins - see you soon! Donegal, Wales, America, Italy, Singapore, HK, SA, UK - high fives and warm summer lovin' to you all.   Back soon. tch x  (oh, and World Cup just round the corner - whoopee!)

photos of garden and hair cut...

Grassmount garden

garden detail

lilly

rose

cistus

gerbera (on the way out)

before

after

EASTER 2014

Ciao Tutti

Quick-flick easter blog to say Happy Easter round the globe. Hope you all having a great time, wherever you are.  Don't eat too much chocolate. Weather got cold again, so my easter "working in the garden" plan is currently put on hold. Instead central heating is on and I hope there will be a decent film or two on tv...

I have finally signed up to the local gym in Forest Hill. Need to build my stamina and muscle tone (plus need to loose some weight!). Nothing too strenuous to start with, twenty minutes on the cross trainer and bicycle-pedal-thingy. Brings on a small sweat. Will try for 25 minutes next week... I feel very out of place there, as it is heaving with young fit mostly males, rippling torsos and muscles. Lots of loud music and sweat. I wander in looking like an old bag lady (it seems) - and climb gingerly onto these huge machines (terrified of falling off the cross trainer) and start to slowly push push push with my hopelessly soft calf muscles.  You have to dial in a "resistance factor".  I notice the tight-t-shirted guy next to me is working with a resistance factor of 19.  Mine is 4.  Blimey, I have some work to do! There is a middle aged man on the running machine. He is really going for it. Thump thump thump - his feet hit the speeding running belt. He is boiled lobster colour - and soaking wet. I wonder if he will have a heart attack.  My time is up, I swig some cold water, and walk out clutching my sainsburys shopping bag. Off to buy coffee. And then home for a hot-cross bun in the garden.  Possibly defeats the object. But hey - at least I am going to the gym!

All good blood wise. I am now going monthly to the HOP (!) which is a big step forward. Next visit in the beginning of May. They gave me some blood pressure tablets which have made my head itch to distraction. So stopped taking them yesterday. Tired of endless medications and rotten side effects. Steroids down to 2mg, so face almost back to normal! Now I am being weaned off my immuno suppressants too. Once I am finished with all those, I will then be revaccinated with all my childhood vaccinations, which is quite a bizarre thought.

Sad news to report is that my resident robins where the victims of a cat attack.  One morning the garden was full of mad tweeting. First the robins, then the tits joined in and finally a magpie too.  A cacophony of bird chatter.  It was clear something was amiss and I went out and banged the fence and made lots of shooing noises. Then I saw him, a handsome ginger-ale-tom stalk boldly out of my next door neighbours garden.  He glared at me and then wandered off nonchalantly into the spring sunshine.  Meantime Robins were in a terribly twittering state. They had lost their nest (not sure if it had eggs or chicks inside). They flew away that day. I haven't seen them since. They have been hanging round the garden for years.  I hope they return.  I miss my garden companions.

Ok. Short and sweet this entry. Hope everyone good, healthy and happy.  Thanks for all messages from everywhere. Love to everyone, family, friends and unknown blog readers - and for no reason at all, other than I have just thought of it, a special hallo to all the Somerset posse. I hope later this year to take a trip down the A303. Lots of you to visit... BUON PASQUA TUTTI!  Back soon tch xx

ps London spring is fantastic. Clean-green trees against blue-blue sky. Everything bursting into colour.  What a buzz. Brilliant and beautiful.

MARCHING ON

Wow - March is marching on so fast it's almost April! And this blog update is horribly late. My usual apologies. I know some of you loyal readers get a bit concerned when there is a long silence. But this time it's just because I have been busy in my spring garden, starting up some artwork and generally rebuilding my normal life style routine.

I did have a bit of a scare with my throat which wouldn't get better (bad since January) and made me feel pretty miserable. Two weeks ago I found myself at Guys Hospital talking to a head and neck cancer specialist. He did a third endoscopy ( I can stay pretty still now - I have gotten used to a camera being poked up my nose and wiggling down my throat) and after a thorough look announced that all was good and there was nothing sinister going on.  I was mightily relieved to hear this. Most likely, he reckoned, the painful throat was as a result of all my medications. He prescribed me some more (!) to try and counteract the thrush which has invaded my mouth. These seem to have worked; at least my throat has completely cleared up. Finally.

I had brilliant blood results for a month - everything sitting comfortably in the middle of the normal range. Cannot tell you how fantastic that feels. I walk out of Kings sky high when I get good results. I have a huge grin on my face and thank all the gods everywhere. However last week, neutrophils and whites had both dropped just below normal. Consultant reckoned it was because of reduction of steroids (slow tapering still in force) and wasn't too concerned. Sets off usual panic in me though. I have to talk to myself very firmly. And then just get on with life. The only physical struggle I have to deal with daily is enormous fatigue. I have to really manage my days so I don't get knocked for six. Too much 'output' and I feel like I have been hit by a steam train. I think this is also due to the reduction of steroids, which can produce a sense of 'well being' and energy.  Now I am down to 3mgs a day, things feel much tougher.  'Withdrawal symptoms' I am told!

We had a sniff of spring a short while ago...The garden started to stretch and sprout. Green shoots and buds everywhere. I made at least three trips to the garden centre, coming home with my arms wrapped round boxes of instant colour (pansies and anenomies) and some more substantial stuff including a honey suckle which I have put out the front. Coffee in the garden, sitting on Mums wooden bench. Watch the robins nest building. Get furious with the squirrels who are frantically digging holes in all my pots looking for, or burying, nuts. The wood mouse has disappeared. But a large black and white cat has been a regular visitor...

Finally made it out of London for the day too. It's been sixteen months since I have left this city.  Had a fantastic trip to Deal  (Lulu, Julian, Jan and Gerald). Blue skies and warm sunshine. Fish and chips (just delicious), sat on the beach building miniture stone sculptures, walked along the pier. Listened to sploshing waves and screeching seagulls. Watched a single white balloon float high into the blue. Woolley pigs (they really do exist). Tea and huge slices of homemade cake at St Margaret's Bay. Lots of laughing. On the way home we spied the moon from the back window of the car, low on the horizon - full, fat and buttery yellow.  So big, you could almost reach out and slip it in your pocket.

Now the cold has returned! The central heating is turned up and every morning I fuss round the garden to check the plants are ok. They say it'll be warm again this weekend. Yes please! 

For those of you in the know, Man United's season is a disaster. I wonder if David Moyes will still be in the driving seat by the time I write my next blog? And the World Cup is just around the corner.. I find this really quite hard to grasp. Last World Cup, in 2010, I was writing my first blog (from Guys hospital) Badhairday, having been diagnosed with AML for the first time. Blimey! That was four years ago. Its been quite some journey... England in the jungle should be quite some trip too! I love our World Cup song.

Time to cook myself some supper.  Hope everyone is wise and well. Spring almost here, well, dancing in and out. Summer next. Life rolling on. Feels good. Greetings round the globe. Keep safe. And thanks for all your messages, still! You are all brilliant! Love and high fives. Back soon tch x

PS / just added a few photos...

another selfie!

Luisa and Julian

Gerald and Janice

Deal Pier

Deal Pier and lots of sunshine

Parakeets in my garden!

Breakfast

BLUE LIGHTS

Ciao Tutti!

Been an eventful few weeks since my last update…

Soon after my birthday I got sick. Woke one night in the silent early hours and started to throw up. Endlessly. Then started to get a fever which climbed and climbed until my thermometer hit 40 degrees. I called an ambulance. Was blue lighted down to Kings and wheeled in to A&E. Arrived about 4am. Was immediately dripped up with fluids, antibiotics, anti-sickness, paracetamol. No hickman line, so had cannulars stuck into every vein it seemed (actually, it was two, but it seemed more with all the poking and prodding that went on - my veins are hard to get into). My blood pressure was very high, so I had wires stuck all over me and hooked up to a heart monitoring machine - lots of bleeping and numbers flashing up and down. Urgent blood tests revealed that my neutrophils and white count had fallen though the roof (after being good only 24 hours earlier) signifying infection.  I was put into an isolation room accompanied by monitors and drips.  Lulu was her usual wonder-woman-self and appeared half way through the day with a bag from home, a bottle of ginger beer and my hot-pink duvet. The haematology team arrived in force and clucked around me like wonderful mother hens. I remained in A&E till 5pm and then was wheeled up to Davidson Ward.

And then the usual routine began: 6 days of intravenous antibiotics, X-rays, scans, daily weighing, hideous food, lots of visitors (thanks my south and north london teams, you were great).  My throat that had been troubling me since early January was still very painful and causing me some distress. I had to endure a very uncomfortable endoscopy one afternoon. They discovered a small ulcer type lesion at the back of my tongue - so I was sent off for a full head and neck MRI scan.  I managed to get myself completely wound up that I had some kind of mouth cancer. It is so easy to fall into the trap of worse-case-scenario. A sore throat that won't clear up, a lesion on my tongue, ear ache - all ingredients that could add up to something very sinister. And in my fragile state, it did. Talk about being my own worst enemy! However, a week later got result of scan and it was confirmed that nothing could be seen and all was ok. Though, as a little aside, I still have a painful tongue - despite endless gargling and mouth sprays and whatever.  Food has become a problem again, partly because it is difficult to eat and also everything tastes foul and leaves a horrible after-taste in my mouth. Some stuff I just can't eat anymore - mostly dairy based things. I am being sent off for allergy tests in a few weeks time. Apparently it is quite common after cord blood transplant to develop food allergies.

I was kept in for a week while I finished a strong course of intravenous antibiotics.  Got home - life picked up where it had left off - gardening, walking, sainsburys, friends for tea etc (I really need to expand on my daily routine). Was back for four days and then blow-me-down, the whole thing happened again! Exactly the same. Throwing up. Fever. Ambulance (took 2 hours to arrive, so must write to London Ambulance Service to complain). A&E. Dive-bombing blood counts.  Cannulars poked into my veins (oh, ouch!) Hooked up to drips.  Intravenous antibiotics. This time I was put onto Waddington Ward. Waddington Ward is good. It has windows with-a-view. I got to see sky and moon and clouds and planes on their way to Heathrow.  Consultant visits me and throws his eyes to heaven, "You again!" I tell him my theory that maybe I am allergic to avocado pears - as on both occasions I had eaten them a few hours before getting sick.  He is interested in this, though, as he points out, it doesn't account for the fevers that accompany the sickness.  After 48 hours he says I can go home with a course of oral antibiotics.  I say "No more antibiotics please, my body is sick of medications" He seems happy with this and I skip out of the hospital dressed only in my polka-dot-blue dressing gown and polka-dot blue slippers.  Skip, of course is an exaggeration - however, I did get out of there as fast as I could wheel my bag-of-bits down the long shiny-clean corridors. And I did only have my dressing gown and slippers to travel in. I think the taxi man was a bit taken aback when he spied me standing on the steps complete with white face-mask…

I have now been home for ten days. Apart from my tongue and limited diet, all is well. At clinic on Tuesday my bloods counts were the best they have been since before the transplant. Everything hitting normal levels.  Cannot tell you what a brilliant feeling that is. My baby cells doing their thing and doing it well.  Keep it up guys. I love you to bits.

The garden is starting to reveal signs of spring - daffodils starting to shoot up - early clematis starting to produce bright green shoots. Have done some severe pruning - passion flower, lavender, clematis, rose. Wendy coming over this weekend for a sort-the-garden afternoon. Have alliums to plant.  A young pair of robins are regular visitors along with squirrels, blue tits and blackbirds.  Oh, and a new baby wood mouse appeared the other day scuttling amongst the flower pots. Things are moving on. I am starting to think about work again and have been playing around with some simple animation apps on my iPad. So wish I still had my studio to return to. I feel ready to start again, but have nowhere to go to. I will have to set up a temporary space in my garage. And thats going to take some sorting! Its mountain high with stuff from Havelock Walk…

Enough now, I need to make myself some spinach soup. Hope everyone has remained dry over these last few stormy weeks. Wish I could have witnessed some of those Atlantic seas though - wild and exhilarating. Especially thinking of all of you down in Somerset. Fingers crossed this mild weather is here to stay for a while. But I wonder if we have a deep siberian blast coming our way?  Take care wherever you are - north south east or west - all around the globe.  Love to all and everyone.
Back soon tch xx

BIRTHDAY!

Ciao Tutti!
Today I am  56! 

Yikes, that feels old! but I am still here to celebrate. It feels like quite an achievement!
Brothers x 2 came round for tea and fat chocolate cake (with candles) and a mini rendition of
Happy Birthday to You.  I am very happy! I am alive and kicking (unlike Man Utd…)

Laid low this week (still laying) with nasty throat infection. On antibiotics. My baby stem cells clearly having a hard time trying to get rid of infection. So I am treating them very tenderly. Bloods are down a bit, but to be expected with infection nagging away at my tonsils.

Last night I lay in bed and watched the moon steal across the sky (looking like a large chunk of half stilton).  There was Jupiter too. Incredibly bright. I was full of thoughts. Awake till 2am (exhausted now). 

Quick blog this - basically for a bit of blatant self publicity and to say thanks to all of you for the stream of texts, emails, phone calls, birthday cards and presents that have been bouncing in all day. It was great to hear from you all. What bunch of brilliant friends.

Below is a birthday photo, taken just now.  Hair is back big time!  Also a"selfie" with me and my brothers. Will write another blog soon with a catch up. Though nothing much has changed - weekly visits to HOP for blood tests. Scan on my eyes which are being troublesome. The usual list. And my medication consumption still hasn't reduced - apart from having a lower dosage of steroids.

bIg hug to everyone.  Back soon tch xx

JINGLE BELLS

Hi All,

late late xmas eve blog update - to wish everyone who reads this a very happy christmas time. Full of santa goodies and sparkle. Hope a bit of calm is descending upon you after these last few weeks of mayhem…and hope christmas storms have not knocked out electricity etc. What a wild night it was last night.

Here is my christmas cheer: had a bone marrow biopsy done two weeks ago (exactly a year on from my transplant, 11th December 2012) and yesterday got the news that all is fine and bone marrow working and no sign of leukaemia!  This is the best christmas present I have ever had (even better than my Hornby train set circa 1962).  Had spent a very anxious two weeks waiting for the result convinced that everything had gone pear shaped. I could have kissed the consultant yesterday. Instead I shed a quiet festive tear;  then drove down to sainsburys to buy some crackers. When I think about this time last year, holed up in that tiny room, tied to a drip (with tinsel tangling off it) and staring out at a brick wall. It is so very special to still be here.  It feels so brilliant to be alive (and walking up the hill). Not been an easy year but I hope 2014 will be healthier all round.  Still another 12 months to go before my immune system in fully recovered and working normally - so more journeying ahead. Fingers crossed it will be easier than 2013.  Haemoglobin recovered and back to normal, steroids being reduced slowly. Platelets had been dropping for some unknown reason, but they too have turned a corner and on the up. Whoopeee.

My saddest holiday news is Luigi has gastric flu and holed up in Italy. So no festive pampering for me. Have not seen him since October. Ouch! that is a long time. Hope he recovers in time to get here for new year.  Celebrations go on nevertheless. Tonight Mel and the boys are coming round for risotto and rummikub. Candles and crackers all over a bright red table. My xmas tree has decided to lean precariously to the right, and I can't move it without risking half the stuff falling off plus a face full of pine needles. So lean it must.  Tomorrow I am joining Lulu and Julian and their extended family for turkey and trimmings plus more crackers. Then home to watch my new hd smart tv - which has an amazing sound system attached to it, courtesy of my brother Adrian. Sounds incredible. A new watching and listening experience!

Ok time to go cook. Hope everyone is well.  A huge thanks to you all for all your amazing support, blog-comments, texts, emails, snail mail, visits, phone calls etc over the year. You have all been a huge support to me which has really helped in my recovery and kept me going, especially through the tough times.  Love and christmas wishes right round the globe: cousins in Australia, nephews in Honk Kong and South Africa and New Zealand, friends in Italy, USA (snowy Cleveland) Letterkenny (big time windy I bet). And all those closer to home, Somerset, Sheffield, Norfolk, Oxford, Hythe, Harlow, Brighton, Whistable, Wales, and all North and South London contingents (the most fantastic bunch of friends).  To strangers too, who I know read this blog. And anyone else I may have missed out. In the words of Tiny Tim, "God bless us, everyone."

See you in the New Year.  tch xxx

     Whooshing into christmas

STILL NOVEMBER

Ciao Tutti!

Over a month since I sat down to write this blog.  Needs some updating. Cant remember too much what has happened during the first part of November. Things were going well. I was down to a visit every two weeks at the HOP clinic. Drove myself to hospital so saved a fortune on taxis.  My blue badge arrived so made parking a whizz.  Visited Tate Modern and parked right outside. What a treat! Regular shopping at Sainsbury's.  Managed to walk up to Horniman Gardens from the house. Great.  Planted daffodils for the spring and chopped back the last of the lavender. Garden all umbers, reds and yellows now; only fushia still flowering.  Has clambered everywhere and looks great, all twisted and tangled and full of red and purple bells (thin variety).  Birds busy on the feeder. Had a parakeet hanging off it the other day too. Local cats suddenly got wind of all my feathered friends and are starting to stroll round the garden too often. I am shooing them away. Am I turning into a mad woman I wonder?

So all was going fine and dandy. Bloods where stabilising and I was starting to feel a whole lot better. My steroids were being reduced, my tremors where getting less. My taste was coming back. My face was  thinning down. Then last week the hospital decided to give me an infusion of immunoglobulins (part of the immune system, immunoglobulins help to identify and neutralise bacteria and viruses). Apparently mine were very low - so it was a precautionary measure as we head into winter. It took two long visits to the HOP Clinic to infuse me with 7 bottles of the stuff.  The day after it had finished I woke at midnight with a screaming headache and high temperature. That went on all night. My brain was falling out. I felt so ill. The following morning I got an ambulance down to A&E at Kings and eventually ended up on a bed back at the HOP clinic. I was told my symptoms were a reaction to the transfusion, given paracetamol and antibiotics to fight off any infection that might be brewing.  A routine blood test also showed my haemoglobin had dropped quite a lot. I queried this with the doctor on duty, but was told it was normal.

Got home, swallowed all the pills. Didn't want to eat anything. Watched my temperature spike. Slept. Friday morning was feeling a bit better, so drove to pick up new glasses from Specsavers…stayed the rest of the day pretty much on the sofa. On Saturday my temperature was still a bit high. I looked yellow. My breathing had deteriorated. Walking up and down the stairs suddenly became very hard work and took ages. Sunday was even worse. Breathing more difficult, even harder climbing the stairs, dizzy and pale.  I read the side effects of the antibiotics I was being given and decided that they were possibly causing the problem. "can effect red blood cells, causing breathlessness, yellowing of eyes and skin, dizziness".  Eventually called Kings to ask if I could stop taking the antibiotics. The registrar wanted me to go into the hospital immediately. Not what I had bargained for. Was very reticent but figured it was better to be safe than sorry. So Mel took me in. A dark windy Sunday evening. What utter misery. Suddenly I was being pushed in a wheel chair down the long corridor of Davidson Ward and into Room 5. The memory of everything - blue uniformed nurses, smell, food, bleeping monitors etc, came flooding back in one big whoosh. This was so not what I ever wanted to experience again.  I held my breath and shut my eyes for the night. Though didn't get much sleep. It was a crazy few hours, full of blood tests, doctors calling into see me at 2am, calcium drips.

In the morning I was told I had a  haemoglobin level of 65 (baseline is 115) and therefore needed a lot of blood fast. Due to the continuing violent headaches it was also decided I needed a brain scan and possibly a lumbar puncture. Oh dear, it was all coming thick and fast.  Wheeled here and there. Shunted through CT scanners, more bloods taken (no hickman line anymore, so everything in and out of me goes via a needle and canular, bloody painful too). chest X-ray. The new blood eventually arrived at 6pm. 3 bags full. I was hooked up all night. The process didn't finish till 6am Tuesday morning. Blimey, was I exhausted!

Haemoglobin level went up to 100. Brain scan was ok. They decided not to do the lumbar puncture (hurrah!) headaches got better. I had colour in my cheeks and could walk again.  In the afternoon I was told by the consultant that I could go home as they had a chronic bed shortage and I was the 'wellest' person on the ward. I was not going to complain. What a relief. Back to Grassmount. I can stare at the winter trees outside of my kitchen window and make a cup of tea. Such simple necessities.

In the end it was thankfully a short sharp visit. But not without consequences.  They have had to up my steroid intake while the red blood cells start to get back into a healthy production line. So back come the tremors, fat face, loss of taste etc.  I am having to go back to HOP clinic everyday for blood work to check haemoglobin doesn't start to drop again. So far it is ok, but hasn't got above 109.  My whites and neutrophils, which had finally been at normal levels last week, have dropped dramatically. I am told this is due to increase in steroids.  Have no idea how much longer I will  have to remain on these wretched pills, but am pretty fed up with the whole situation, especially as I was almost off them (after 6 months).

Not sure in the end what caused all the problem. I think it was a mixture of a rather cavalier doctor decreasing my steroid intake too quickly the week before the infusion. Despite my blood work showing a lowering of haemoglobin reading, this was not picked up, so my haemoglobin count had already started to fall before the infusion of immunoglobulins took place. Plus I had a double whammy of bad reaction to infusion and antibiotics. Everything all happening within 48 hours. The perfect storm.

I have just reread this and its all a bit confusing and long winded.  So congratulations if you have managed to get yourself through it all!  I need to go and make myself an omelette. I look forward to Luigi returning, he has been gone an age, and I have missed him big time over this last week. Its hard doing this alone. Though I have had great support from my family, Mel, Pip, Lulu and Julian. You are all stars. Thanks guys.

Lovely soft low November light shining outside. My neighbours holly bush is full of berries. The Robin is hopping around the empty hosta pot pulling at delicious bugs. The squirrel stole the coconut that I took ages to string and hang...

Hope everyone well. The annual madness is already upon us.  Keep calm. Thanks for messages that still keep coming through. Stay warm, or cool if you are southern hemisphere. Back soon. tch xx