WHEELS ENGAGING

Hi All,

Using my extra hour to update blog...

Since I last wrote, autumn has really dug in and started to shift the landscape. Dank foggy mornings hover over Forest Hill.  Leaves clog the pavements making them horribly slippery. Wild winds. Deeper darker night skies. White-ice moon. Temperature has dropped which has meant the central heating has been turned on and up (hell, expensive too!) and I am hunting out thick woolie stuff to wear. My head gets very cold, but thanks my sister-in-law, Cindy, I have a range of warm cashmere beanies. Much as I try though, I can't seem to carry off beanie-head-gear like David Beckham...

So, the wheels have finally started to turn and the early stage of transplant process has begun. Yesterday (yes, saturday!) was the start of my body work up. All major organs must be in good working order to cope with the ferocity of chemo and radiation. I was at Kings for an ultra sound on my heart.  No results immediately forth coming from this test, which is a bit disconcerting. "Pictures are poor quality" the nurse says. "I have to analyse them carefully and send a report back to your consultant - sorry I cant tell you more".  Me too.  I hope previous chemo treatment has not effected my heart function too badly.  Blimey and Puff.

Tomorrow at 9.30am is a Lung Function Test (that should be interesting, as despite loud - and pretty constant - voice, I have a low "blow"capacity according to my GP), followed by some Kidney tests, which will involve some kind of radiation injection and hours of hanging around.  More blood tests too.  More puffing.  I hope to be home in time for tea.  Crumpets.  Over the next two weeks I have so many tests and appointments for this that and the bloody other, that I have had to lay out all my letters from the hospital in a long line on the kitchen table - with dates highlighted in green florescent marker pen - just so that I don't forget.  Chemo head and all that.  November 14th is the day I am admitted and also get my Hickman Line inserted.  3 lumens!  Again, blimey and puff.  Something seriously sci-fi about having all these plastic pipes bursting out of my chest. Dates seem to shift constantly but I have been told that chemo now starts on 15th - radiotherapy a few days later, and transplant on 22nd.  We shall see.

I have managed to stop stressing about the treatment pretty much. There are still some hard days when everything feels pretty damn bleak.  But it really is a matter of "che sarà sarà" and I will have to cope with it the best I can, as and when.  I have imagined plenty of nightmare scenarios which only succeed in putting me into panic mode.  The trick of course, is to immerse myself into everyday, this has enabled me to shut most of it off.  Lots of hard work in the studio to complete Periodic Tables and Multiplications a-plenty!  Big thanks Lulu and George for all your hard work and commitment - I could not have gotten to the finish line without you guys sorting, stamping and badging.  What a hive of activity we have been.  Lets hope Affordable Art Fair manages to shift a couple of prints.  Wendy too, thanks for giving up precious free time to come and weed, cut, throw and sweep -  the garden now sorted and ready for winter, with daffodils planted to herald in spring.  I miss Lilly hugely. Sometimes, for a fraction of a second I forget she is gone, then I remember and my heart sinks. The house is so terribly quiet and empty without her.  It has been quite an experience. Had no idea loosing an animal would be such a wrench. Thanks to so many of you who emailed, phoned or blogged.  I really appreciated all your messages.

Luigi phones all day, everyday! He has finally learnt to text! (yes, no kidding, that is true...) and one of his friends has Skype, so we have chatted on-line too - although he doesn't quite get where the camera is, so disappears frequently. Exasperating! Technology and Luigi don't exactly go hand in hand.  He is back next Friday. I am so pleased. Have really missed him and looking forward to spending a few quality days together before heading off to Camberwell (thats a euphemism for Kings for anyone reading this outside of London!).

This photo is from last weekend,  October 21st,  me and very dear friends on a trip to Hastings (almost 30 years ago we were a band - of sorts - ah, those were days). We crammed into my ancient Rav 4 and drove down the A21.  Ravilious country.  Amanda made egg sandwiches. They stank. We laughed a lot.  Hastings was wet and misty and brilliant.  Sat on the beach under the shelter of a blue painted fishing boat and made sound recordings of breaking waves and screeching gulls - stuff for me to take into my isolation room...

Greetings around the world - to cleveland ohio, hong-kong, sydney, roma, caribbean, south africa, the welsh valleys, norfolk, london and everywhere - much love to you all. Back soon. tch x

GONE BUT NOT FORGOTTEN

This is Lilly last Thursday. Yesterday she left. A visit to the vet ended 16 and a half years. Very sad. She had kidney disease and a probable cancerous tumor (oh my!) and had deteriorated rapidly over the last couple of weeks.  Any animal lovers amongst you will know the misery of loosing a beloved 4 legged friend. I am feeling gutted and horribly weepy. She had been a soft and constant support through these last couple of difficult years. Always there. Apricot paws and snow white whiskers. Will miss her big time...

As for me -  blood counts are going up. But very slowly. Visits to the Day Unit are down to once a week. Transfusions etc all finished. I am feeling well, but extremely tired, which I guess is just chemo side effect. I am managing to do 2 hours a day in the studio - preparing work for the Affordable Art Fair in Hampstead in November. Its good to get into the studio and feel some resemblance of normality - I know it wont last for long, but at least when I am in there I am focused on ink and rollers and paper. Its a great switch off.

Luigi returned to Italy a week ago. Probably accounts for some of my exhaustion as I am having to do everything on my own now. Miss him too. Blimey. Too much missing going on! He will be back in November  and hopefully we will have some time together before my confinement begins.  Things are now beginning to kick in at Kings - I have a date for 29th October for my Body Work Out. Heart. Lungs. Kidneys. Blood (13 vials - that seems excessive to me - what are they checking out for goodness sake!).  7th of November is when I have to sign a consent form - pages of it apparently, with every possible scenario listed. That should be fun reading. Also will meet the Transplant Team (although they mainly discuss rather than administer) and maybe some of the nursing staff.  Time marches smartly forward. I wish sometimes I could stop it.  I am never more aware of a date looming closer and closer.  However, I am feeling more positive about the whole thing. It is my chance to knock the leukaemia out once and for all - and to get my life back on track - even though it will take a many, many months.  The cord blood stem cells that have been identified as good matches (reasonable that is - 4 and 5 out of 6)  are coming from all the way across the pond, Minnesota I think. So they too have a journey to complete. I hope they have a comfortable flight.

And onto other things. Autumn is cracking on. Conkers shine, leaves fall red and burnt umber. The air is changed. There was a bonfire up on Grassmount the other day and I got a hit of that particular bonfire smell which reminds me of my childhood - wheel-barrows full of all the scooped up stuff from gardens: leaves, grass, finished plants. Thick dense smoke that makes your eyes sting. Wish I could bottle it up and take it with me into hospital. My own garden sadly lacking in care and needing serious attention. But Passion Fruit still deeply passionate and full of fruits. So too the Fuscia - bells still tangling their way through dead clematis. But bees have left. Lilly has a spot which will get early morning summer sunshine.

Hope you all are good. This blog has been a long time coming, but the last couple of weeks have been difficult ones and not able to concentrate on keeping in touch with the wider world. However, as usual I must thank many of you for emails, texts, blog comments, phone calls and visitors. We laugh. Still we laugh. Which is the best cure for everything.

Salute tutti. And will be back sooner than before. XX

TIME FLIES

Hallo All,

More apologies in order as again slow to update this blog! Several reminders coming through...
Left hospital over a week ago now - fever went down and I just had to hang out in my room for
5 days while the antibiotics did the trick. I have been home for almost ten days - but in and out of Day Unit every other day, with one mammoth 5 hour blood transfusion last wednesday. Slowly my counts are coming back up. Neutrophils today are 0.9 - so hopefully by the end of the week they will get back to normal (1.5 and above) and I can start eating salad and fruit again and shift my rather tiresome diet to something more appetising.  I reckon I may well have had my last ever stint in the Samaritan Ward.  They have been brilliant there. Really looked after me. I have always felt safe and confident in their care.  I wish in many ways I was able to have my transplant at Guys, in a place I know with people I trust. Kings is all unknown at the moment. All I know is the transplant rooms have  windows that look out onto brick walls...that wont do the spirit much good!

This weekend managed a couple of "long walks" from home up to the Horniman Museum, round the park and back again. Also went for a short drive. Oh the bliss of getting in the car and driving again! Just made me feel normal all over. When all this is finished, my dream is to get myself a van and drive right round the uk coast - take a camera and some lino cutting tools and work-on-the-road. A print factory on wheels...

But before that, I have to get through this bloody transplant business. I have been given a date of 14th November - which is when I will have to start the "conditioning treatment" which is one week of more heavy duty chemo (I am mightily tired of heavy duty chemo, well any kind of chemo come to that) plus TBI. TBI you may be wondering, stands for Total Body Irradiation - of which I have got to have over a period of two days... I have a fantasy that I will be turned on some kind of spit and fried. Luckily because of my age, I will get a lot less than the normal quantity younger people are given. I have been promised I wont turn pink all over (people do, I have seen it, looks like really really bad sunburn).  The actual transplant of the baby stem cells (cord bloods) will take place seven days after the start of the chemo. Then I am in isolation for eight weeks. Sealed door and windows. But will have a fridge. Lucky me!  I will explain more later, but needless to say it has become clear to me over the last few weeks that this is a very dangerous procedure - with associated mortality and some pretty scary statistics.  The baby cord bloods are very immature stem cells and take a longer time to graft than normal adult stem cells. This means until they graft I am at serious risk of infection and will have no immune system whatsoever to protect me.  I will unfortunately get ill. And will unfortunately be loaded up with strong antibiotics and a load more besides.

Hey! Jolly old blog this. I am off to bed before I write anything else too miserable. Been a tough and testing time recently. Apologies if it shows! Global hIgh fives and thanks as ever for blogs, texts, emails smoke signals etc  A presto tch x

IN AND OUT AND ROUNDABOUT

Chemo finished! In the end, was only 3 days worth, not the original 5 as I was told. Plus it was less strong than the stuff I had in August, so didn't have to go through the misery of feeling totally poisoned all over. I am tempted to say "what joy!" though that would be pushing it a bit...

Was sent home last Friday (14th) with my blood counts still up. Quiet weekend at grassmount. Saturday was a perfect harvest-festival kind of day. Lovely crisp light spilling through early autumnal trees and soft baby-blue skies. Holly berries starting to turn red, still the odd sweet-pea flowering plus a profusion of passion fruit flowers. Lisa and Mel dropped round for a cup of tea. Good to see old friends as I am starting to feel very holed up both physically and emotionally.

Now chemo is over the reality of transplant looms ever closer and I still find myself very conflicted over the process. Have had endless discussions with consultants, doctors, nurses, family and friends and it is still a hard call to make. My reality is not so bright . My rare tissue type means there is no match out there, despite a world wide search. The half match i have with my brother (known as haplo identical) has now been dismissed as a not a viable option. So now in am left with the final possibility which is a "double cord blood stem cell transplant" which is using stem cells from the umbilical cord. This method of transplant takes longer to graft and for the new immune system to get up and running properly. So the likelihood is that I won't be very well for some time as i will be without a working immune system, so very susceptible to a range of infections. Plus up to eight weeks in isolation. Which is an awful long time... The transplant is due to take place in mid november. I will need a ton of positive thinking, prayers to all and any gods plus anything else to will my recovery. The future scares me big time so I must just try and focus on the other side of transplant nightmare and believe that I will make it through and touch the end of the rainbow. I don't want crocks of gold - just to carry on living. Being in my studio, sea air on my face, united winning, garden pottering, sky watching, driving in my car...all the ordinary stuff of everyday.

Oh and here's a thing - almost forgot - was re-admitted to hospital on Monday night with a high temperature. Am in a single room (with stunning view of St Paul's and the city) and loaded up with heavy duty antibiotics. I guess it is neutropenia sepsis again as my counts dropped over the weekend and I now have no neutrophils to protect me from germs etc. Hopefully won't be in here too long. But in the meantime I can lie in my bed and look out and see a 'thighs worth' of the Shard.

Tired. More soonish. Big wave to you all... tch xx

HOME LEAVE

Ciao Tutti!

Been too long since I sat myself down in front of this computer to update blog. I am feeling guilty as I know it gets checked frequently - so my apologies for being slow. But, hell, I am slow at the moment - in every way. Stuffing gets knocked out of me if I try to do anything for much longer than 10 minutes...

First is good news: received confirmation on Thursday that I am in full remission! Big relief. Amazing to think I am 'disease free' as I write this.  I go back in to Guys on Monday (10th) for the second round of chemo - still need another bash on the head to get as many of those leukaemic cells totally destroyed -  I have been told I will not be having the same regime as before, Flagida, which I am very pleased about. It's such toxic stuff, and now that it has done the job and gotten me into remission, the hospital want to ease off a bit on the poison - apparently my body is nearing the level of maximum toxicity it can take, so am having something a little less powerful called Mitoxantrone, though it will still include cytarabine unfortunately.  God knows what the side effects will be - I only hope it doesn't make me agitated like before. That was horrible...and also not to succumb to hideous nightmares would be a great relief. All will be revealed in the coming week...

Was hoping for my final few days of "home leave" to be calm and relaxing, but unfortunately far from it. Had a full week of hospital visits: Day unit on Monday, Tuesday and Friday. Monday was a failed bone marrow biopsy - which was painful - even more so knowing I had to come back the next day to start over again.  Which I did and it was eventually successful - but as bone marrows biopsies go it took a long time and I had to endure a lot of pain - probably the most unpleasant one I have ever had. A lot of "sucking-in-air-and-blowing-out-swearing" from me - bone marrow was hard to "apple core out"... Allergy clinic at St Thomas's on Wednesday (3 hours) a visit to UCH Macmillan Cancer Centre for a second opinion on Thursday (5 hours).  Then another five hours in Day Unit on Friday for some blood tests. All week I have been spiking a temperature in the evenings so they were wanting to check that I am not harbouring some nasty infection. So my final week of peace and relaxation in September sunshine was busted up by all the medical stuff. Very frustrating. And to top it all Luigi has lost his mobile phone on the bus today, so got to hack down to Peckham Rye tomorrow and get another one, and open up another account and get all the paperwork done etc etc. Just don't have the energy for it all right now. Washing to do, bag to pack, fridge to clean...

However did spend a lovely blue-sky-sunshine hour in Horniman Gardens this afternoon with Mel. The sky was full of jet-plane vapour trails criss-crossing high into the atmosphere. The Horniman trees still putting on a good display of green and lots of autumn flowers basking under the midday sun. I basked in the dapple shade of a London Plane Tree with a baseball cap on and factor 50 on my ears!

I did manage to make the Private View of Bite on Tuesday at the Mall Galleries.  Went with Luigi and my brother and sister. Some good print work - and loads of people to bump into and talk with (hi to any of you out there reading this - was great to see you!). All a bit overwhelming and exhausting though. I was wiped out after 45 minutes.

Paralympics have been amazing to watch and found myself shouting at the tv on numerous occasions when gold medals where in the offing (and what a lot in the bag too!).  My stamina has grown over the last two weeks, and have managed on several occasions to walk slowly up Taymount Rise - and for those of you who know it, that is no mean feat - especially with chemo still rattling round my system.

Now its cracking on for midnight and I need to get myself some sleep. This is as-dull-as-ditch-water-blog, but maybe will be more exciting once I am back into the bosom of Guys Hosptial (ha ha).

As usual many thanks for blog comments, emails, texts, phone calls and visits - been so great SEEING people - even if I have been laid out like some beached whale under a rug.

Will try and update a bit more frequently. Meantime take care all and enjoy this wonderful last hit of summer as it comes through. Greetings all around the hemispheres. tch

CHILLING OUT

Been a week since I last wrote this blog; pleased to report it's not from feeling chemo hell that I have been slow in updating but just been quietly recovering at home. Still very tired and very slow. Still swallowing a fistful of huge fat white tablets twice a day. Manage to walk round Grassmount roundabout every day, sometimes x 4 which feels a ridiculous achievement!

Upping my visitor intake - yesterday Mel drove me up to Horniman Gardens and we sat on the wooden seats by the bandstand and admired the London skyline view, including The Shard (with Guys hospital squating below the gleaming spire). The park was swarming with buggies, seemed like there was some kind of buggy convention, but maybe just bank holiday hordes...Nic came over in the afternoon and Lulu and Jan came over early evening. Lu threw together, in a matter of minutes, a wonderfully healthy soup with turmeric, beans and fresh vegetables. A.Wray came over on Sunday night and gave me heavenly reflexology: I lay flat out on sofa with knitted beanie on my cold bald head and wrapped in my favourite rug (bought form MOMA in New York). Luigi cooked delicious asparagus risotto (I ate a big plateful, first food I enjoyed for weeks) and we played cards. Perfect.

My garden still producing sweet peas and late summer clematis. The place is a-buzz with bees too, crawling in and out of fuscia bells etc. like to think I am doing my bit for the bee population! Luigi did some rather fearsome pruning at the weekend - was too tied to intervene, but I guess it will all grow back!

As I write this I am in the Day Unit receiving 2 units of blood - a four hour procedure and my bum is very stiff. Only one and half hours to go... Pleased to report that all my blood counts have finally bounced back up. A healthy 2.2 neutrophils, 2.4 white cells and 50 platelet count. Platelets are what clot the blood. Last week they had dropped to 4 (should be 150+) which was shudderingly low, but a transfusion pushed them up to 19 and now they are going up on their own accord. Just my haemaglobin that is low, hence today's transfusion. I have a bone marrow biopsy to look forward to next Monday to see if I have gone into remission after the FlaGida chemo regime. Please cross fingers you all. I need to go into remission. Then back to Guys on Friday 7th for my second round of chemo. Another 5 days of nightmare poison, stomach injections and filthy gloopy mouth. Am dreading it, but it will at least be the last one. It's phase two of this treatment, the bone marrow transplant, which is starting to stress me out. I will blog about it later, at the moment I want to keep that reality as far away as possible.

Thanks for blog comments and emails from both hemispheres, always a huge pleasure to receive them. Hope everyone is well and enjoying the final countdown of summer. I send you all love and high fives. Moving on and moving up. Paralympics start on Thursday, least this time round I will have the energy to watch.

Just me and a handful of nurses left in the Day Unit. My transfusion machine is humming and clicking next to me, only quarter of a bag to go. 5pm sun is dropping silver light onto the scaffolding outside the window and throwing shadows onto the empty red Day Unit chairs. I can see little squares of sky through the muddle of metal bars. Luigi on his way to pick me up. I close my eyes and imagine I am in my studio making up a periodic table and that tomorrow will just be another normal day...

A presto tutti x tch

RESPITE

Home at last! Made it yesterday afternoon complete with enormous green sack full of medicines. Too many pills to pop. A selection of antibiotics to protect my lungs, kidneys and stomach from a variety of infections. Hard work just swallowing them all - most of them enormous great buggers! Warm bath this morning. Heaven. Food still very problematic and not really wanting to eat anything, but having to try little and often. Hope appetite comes back once my bloods counts go up. Lost 9 lbs- (hurrah, hit my tone zone in double quick time!) and a lot of hair...

Luigi and I curled up on sofa this afternoon watching Casablanca. Lilly joins us, boney curled up ginger ball. Purring madly but clearly confused at my almost bald head! She looks at me quizzically. I stare out of the window at my square slice of garden - a bit dusty and overgrown wild edges. A dark blue hibiscus, lavender bending with bees, an elegant red fuscia bush that has spread through clematis and roses and now stands over 7 foot tall (Luigi and I bought it from Sissinghurst Castle seven years ago - a thin spindly twiglet in a plastic pot). A fluorescent yellow potentilla, hot pepper geranium and a mass of passion fruit crawling over the fence and stretching its way up to the top of the house. Just as two years ago, my garden gives me great pleasure. In a few days time I want to be out there pottering and drinking a cup of tea in the sun. Solid grey today though. This is the August we know.

Off now to do one turn round the Grassmount roundabout, my exercise for the day. Tomorrow will be in Day Unit for a platelet transfusion and blood tests. Dull blog. Bit like the weather! But so good to be home. Catch up soon TCH