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