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| Showing off my new hair. Soon it will all fall out - again! |
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| Showing off my Hickman Line. Put in today. Ouch! |
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| Hickman Line (detail) |
Monday, 3 December 2012
SHOWING OFF
Thursday, 29 November 2012
ALMOST THERE
Hallo All,
Seems my "sneaky feeling" re more delays may turn out to be right, but from an unexpected corner: this time its me! Last week went to Kings to sign consent forms for transplant - which required a brave heart let me tell you - not easy reading! Had a routine blood test, only to discover that my counts had dropped quite considerably. So was required to undergo a further bone marrow test - just to check I have not already relapsed. You guys know the routine by now... lots of swearing and searing pain. Over reasonably quickly. Sore back for a day or two. I think I have had eleven in total since 2010. Holey bones. check this out...
The initial result was encouraging with no blast cells seen on the aspirate (thats blood from the bone marrow). However will not be given the all clear until tomorrow (Friday) when the results from the actual bone marrow are known. Meantime, last weekend I developed a large and unsightly "boil-on-the-bum" (as opposed to boil-in-the-bag) - I like to think I could get away with telling people it is on my lower back, but its fairly and squarely on my left hand buttock. Oh lord, here starts the end of my dignity for the next few months. I have been put on a high dose of antibiotics and given special dressings (hard to put on staring back-to-front in a mirror, with de-frosting shoulders to boot). Further blood tests saw the counts going up again at the end of last week - hurrah! And then dropping back down again yesterday - boo! Talk about a roller coaster ride. I am just hoping that low counts are due to antibiotics and nothing more sinister. Rock n' roll.
Good news, if I can call it such (to be honest, terrifying news) - is that cords have now undergone all virology testing and have passed with flying colours. So, as I tip-tap on here, there is a metal box, stored in liquid nitrogen, being loaded onto a plane somewhere out west. Idaho sounds romantic. Kentucky rhymes with Lucky. Who knows what state they are coming from. But we all know where they are going to. And lets hope the trip will be worth it. I guess I will never know the donors. But I wonder about them. Have they started to crawl yet, cut their first teeth, spoken their first word? Perhaps they can already build wooden play bricks one on top of the other, bang saucepan lids loud on the kitchen floor and turn pages of a bedtime story. I wonder if they like Where the Wild Things Are. I feel like Max sometimes. Sailing away to some unknown land full of roaring stamping beasts with terrible claws and terrible teeth. I hope I manage to contain them as well as Max did. And make it home safely for supper.
Whoops, that was a bit of a wander...
So, providing bone marrow is ok, and antibiotics do the trick, I should be on the starting blocks again. Hickman line goes in on Monday. My room is allocated on Tuesday. First chemo administered on Wednesday. But there have been many false starts to this treatment, so until I am actually in hospital nothing is certain. Luigi comes home tomorrow. Thats for sure.
Skyfall was great. Loved all the London stuff - Vauxhall Bridge, MI6 building, Aston Martin in a Peckham lock-up. Bronze exhibition was fascinating. The big highly decorative statues don't really do it for me. Horse and sun chariot was exquisite - circa 1400 bc. Amazing. My west country visit was cancelled. Lots of rain put pay to that. Wet railway lines and too many ducks paddling on the highway. Sad not to wander down to Watchet Harbour and catch a whisper of Atlantic breeze coming up the Bristol Channel. Instead, I have been working in studio. Seeing near friends, calling distant ones. Emails and texts flying in and out. Dusting down and catching up. Gathering hugs by the bear load. Thanks to so many of you for your tenderness, caring and wonderful generosity. If love and support was all I needed to get through these next few months, I would fly - no, I would warp-speed through (tempted to make a Mr Spock reference. But I won't).
Last night was another ice-white moon and diamond cut stars. At midnight, I hung out of my bedroom window and breathed it all in. Down and deep. Wrapped myself in indigo blue. A bird was singing. A single note cutting through the dark cold air.
Back soon. tch xx
Seems my "sneaky feeling" re more delays may turn out to be right, but from an unexpected corner: this time its me! Last week went to Kings to sign consent forms for transplant - which required a brave heart let me tell you - not easy reading! Had a routine blood test, only to discover that my counts had dropped quite considerably. So was required to undergo a further bone marrow test - just to check I have not already relapsed. You guys know the routine by now... lots of swearing and searing pain. Over reasonably quickly. Sore back for a day or two. I think I have had eleven in total since 2010. Holey bones. check this out...
The initial result was encouraging with no blast cells seen on the aspirate (thats blood from the bone marrow). However will not be given the all clear until tomorrow (Friday) when the results from the actual bone marrow are known. Meantime, last weekend I developed a large and unsightly "boil-on-the-bum" (as opposed to boil-in-the-bag) - I like to think I could get away with telling people it is on my lower back, but its fairly and squarely on my left hand buttock. Oh lord, here starts the end of my dignity for the next few months. I have been put on a high dose of antibiotics and given special dressings (hard to put on staring back-to-front in a mirror, with de-frosting shoulders to boot). Further blood tests saw the counts going up again at the end of last week - hurrah! And then dropping back down again yesterday - boo! Talk about a roller coaster ride. I am just hoping that low counts are due to antibiotics and nothing more sinister. Rock n' roll.
Good news, if I can call it such (to be honest, terrifying news) - is that cords have now undergone all virology testing and have passed with flying colours. So, as I tip-tap on here, there is a metal box, stored in liquid nitrogen, being loaded onto a plane somewhere out west. Idaho sounds romantic. Kentucky rhymes with Lucky. Who knows what state they are coming from. But we all know where they are going to. And lets hope the trip will be worth it. I guess I will never know the donors. But I wonder about them. Have they started to crawl yet, cut their first teeth, spoken their first word? Perhaps they can already build wooden play bricks one on top of the other, bang saucepan lids loud on the kitchen floor and turn pages of a bedtime story. I wonder if they like Where the Wild Things Are. I feel like Max sometimes. Sailing away to some unknown land full of roaring stamping beasts with terrible claws and terrible teeth. I hope I manage to contain them as well as Max did. And make it home safely for supper.
Whoops, that was a bit of a wander...
So, providing bone marrow is ok, and antibiotics do the trick, I should be on the starting blocks again. Hickman line goes in on Monday. My room is allocated on Tuesday. First chemo administered on Wednesday. But there have been many false starts to this treatment, so until I am actually in hospital nothing is certain. Luigi comes home tomorrow. Thats for sure.
Skyfall was great. Loved all the London stuff - Vauxhall Bridge, MI6 building, Aston Martin in a Peckham lock-up. Bronze exhibition was fascinating. The big highly decorative statues don't really do it for me. Horse and sun chariot was exquisite - circa 1400 bc. Amazing. My west country visit was cancelled. Lots of rain put pay to that. Wet railway lines and too many ducks paddling on the highway. Sad not to wander down to Watchet Harbour and catch a whisper of Atlantic breeze coming up the Bristol Channel. Instead, I have been working in studio. Seeing near friends, calling distant ones. Emails and texts flying in and out. Dusting down and catching up. Gathering hugs by the bear load. Thanks to so many of you for your tenderness, caring and wonderful generosity. If love and support was all I needed to get through these next few months, I would fly - no, I would warp-speed through (tempted to make a Mr Spock reference. But I won't).
Last night was another ice-white moon and diamond cut stars. At midnight, I hung out of my bedroom window and breathed it all in. Down and deep. Wrapped myself in indigo blue. A bird was singing. A single note cutting through the dark cold air.
Back soon. tch xx
Tuesday, 20 November 2012
LIFE IN LIMBO
Dear All,
My unexpected free days are speeding by. Its quite a weird thing. Last Thursday I was geared up to be dressed in leopard-spot pyjamas and full of chemo. But instead found myself speeding down the M20 towards the sea. Walking on Camber sands. Low tide and low silver light. Watching 3 grey wippets tearing across the beach. Lean machines. Hurling themselves at each other and yelping wildly at the cold salt air. Dusk arriving as we left. Home to Iden. Fred stokes the fire and Audrey makes a Yorkshire brew. My oldest friends. I sink into the deep sofa and feel safe, surrounded by everything I have known for so long. Walls choc-a-bloc with paintings. Hundreds of art books to dip in and out of. Drawn curtains stop the night from creeping in. This is better than the transplant ward.
The previous weekend Tony cooked a wonderful lunch for 16 of us. And Naomi made a pudding-to-die-for (not literally I hope). Was great to see so many good friends round the table. Lots of prosecco and a crescendo of voices. Thanks T for your moving "bon voyage" speech (despite the delay). I almost got tearful - but just managed to hold onto them all.
So my list of extra "things to do" is getting ticked off daily: tomorrow is Skyfall at Brixton and Wednesday Luigi and I will go to the Royal Academy and see the Bronze exhibition. He goes back to Venice for a few days next week, while I will catch a train to Taunton and spend a couple of days in Watchet. Time to breath in some Exmoor air and maybe see a stag or two wandering over the winter hills. Work in the studio also goes on regularly. I now have orders to complete. My appetite is back with a vengeance. Pounds are piling on. Which is good news as it means I will have stuff to loose. I am fit and feeling healthy apart from lots of aching bones and sore joints. My hair is starting to grow back (albeit minimally) but I am told it will all fall out again when I have the Total Body Irradiation. So theres something to look forward to...
Unsurprisingly, not much further news from Kings. Or nothing particularly good at least. I was told last week that the mother of the baby whose cords I will be getting, has rheumatoid arthritis. So this means an outside chance that it could be passed onto me via the new immune system. Ah, my straw gets shorter by the week! Last friday I was told that funding approval has been given and I was led to believe that today (monday) the cords are being ordered from America. But I have not signed a consent form. And from what I have been told previously, cords cannot be ordered until consent forms are signed. I sent an email today to remind them, but have had no reply. The administration system is just appalling. Their laissez-faire attitude continues to amaze me. I have a sneaky feeling that there are still more hurdles to jump before I finally start. I am really fed up and cross with the whole situation. But being fed up and cross is actually much more positive than being anxious and stressed. I want to get on, get in and get out and get back to my life as soon as I can. This strange limbo-time feels somehow rather unreal. I know I should be in hospital right now, but instead I am still kicking about outside. Least I am kicking about productively, but I hope not to my detriment...
Thanks to you all for keeping up with me. Your messages of support always do my spirits a lot of good. Great to hear from the crew at LCC - appreciate you all still following this journey! Greetings as usual around the globe and a special hallo to Letterkenny.
Back soon tch x
My unexpected free days are speeding by. Its quite a weird thing. Last Thursday I was geared up to be dressed in leopard-spot pyjamas and full of chemo. But instead found myself speeding down the M20 towards the sea. Walking on Camber sands. Low tide and low silver light. Watching 3 grey wippets tearing across the beach. Lean machines. Hurling themselves at each other and yelping wildly at the cold salt air. Dusk arriving as we left. Home to Iden. Fred stokes the fire and Audrey makes a Yorkshire brew. My oldest friends. I sink into the deep sofa and feel safe, surrounded by everything I have known for so long. Walls choc-a-bloc with paintings. Hundreds of art books to dip in and out of. Drawn curtains stop the night from creeping in. This is better than the transplant ward.
The previous weekend Tony cooked a wonderful lunch for 16 of us. And Naomi made a pudding-to-die-for (not literally I hope). Was great to see so many good friends round the table. Lots of prosecco and a crescendo of voices. Thanks T for your moving "bon voyage" speech (despite the delay). I almost got tearful - but just managed to hold onto them all.
So my list of extra "things to do" is getting ticked off daily: tomorrow is Skyfall at Brixton and Wednesday Luigi and I will go to the Royal Academy and see the Bronze exhibition. He goes back to Venice for a few days next week, while I will catch a train to Taunton and spend a couple of days in Watchet. Time to breath in some Exmoor air and maybe see a stag or two wandering over the winter hills. Work in the studio also goes on regularly. I now have orders to complete. My appetite is back with a vengeance. Pounds are piling on. Which is good news as it means I will have stuff to loose. I am fit and feeling healthy apart from lots of aching bones and sore joints. My hair is starting to grow back (albeit minimally) but I am told it will all fall out again when I have the Total Body Irradiation. So theres something to look forward to...
Thanks to you all for keeping up with me. Your messages of support always do my spirits a lot of good. Great to hear from the crew at LCC - appreciate you all still following this journey! Greetings as usual around the globe and a special hallo to Letterkenny.
Back soon tch x
Camber dusk
Thursday, 8 November 2012
WHEELS DISINGAGING
Dear everyone,
Up until yesterday I was on a countdown for my admission to Kings - 7 days left and riding a daily roller-coaster of emotions. Nervous and waking early every morning knowing that another day was chalked off - but also really wanting to get in and get on with it. I have found the long wait stressful and exhausting - so in a weird kind of way I need to get started. However at my first Kings clinic appointment yesterday it became apparent, through conversation with the consultant, that some major administrative fuck-up has occurred (apologies to those readers who would use a more polite turn of phrase) - with the result that the transplant has no clear start date - but will "probably be sometime in early december". Needless to say I was furious. Fortunately my brother Richard had come along to the appointment as consent forms were due to be signed, so he was there too to add his penny worth of incredulity (is that grammatically correct I wonder?).
I will cut a long story short: before stem cells can be sent over from USA - funding has to be applied for and approved. This, as you can imagine, takes time - funding approval requires two weeks. Once funding approval is received then stem cell identification and safe passage can get underway. This requires a further two weeks. Only when cells have arrived and are in storage at Kings will they start the conditioning (ie start of chemo and radiotherapy). At yesterdays meeting it turned out that the letter for approval was only sent out last Monday. Its easy to do the maths... I am left wondering why it took so long to apply for funding, when they confirmed in September that I was to have a double cord stem cell transplant. Also seems the consultant had no idea I had been sent a letter on October 18th confirming that the treatment would start on 14th November.
How bloody inept. Lack of communication, no joined up writing, hopeless bureaucracy. My confidence in Kings has dropped through the floor. I told them this yesterday in a fury of tears "this is my life you are dealing with here - and so far you are fucking it up - are you going to treat me in the same way when I am up on the ward? How do I know you will give me the right dose of chemo? the appropriate medications?" There was silence in the consultation room. Of course I am told that the medical care I will receive will be excellent. And they apologise profusely for their incompetence and my case will be taken forward as "an incident". Sure, that makes me feel a whole lot better. Ha! My head spins. I am still in remission, and hopefully will still be in December but nevertheless there is a small risk that relapse could happen before then. In which case I could not have the transplant. Chaos. This also impacts on family and friends who are first hand supporting me through this. And Luigi arrived back from Italy last week too, ready for the off. Now we are all on "hold".
So I came home, crawled under my New York rug, ate a fat chocolate eclair and drank a big red mug of tea. Over the past few weeks I had managed to get myself psyched up and reasonably emotionally prepared (not an easy feat) and to suddenly be told that it is not happening has really unsettled me. It feels a bit like an emergency stop in a car - wham, jerk, freeze. Thank god I always wear seat-belts. There is a strange kind of cruelty in the whole thing. To be so close to something I was not looking forward to, and now to have it put back only means putting off the inevitable even longer. Not good for my head.
However, clouds have silver linings. At least I have a bit more breathing space and can now do a whole list of things that were going to be impossible to achieve: See Skyfall. Visit Royal Academy for the Bronze exhibition. Go to Camber for a windy walk over the dunes. Watch the kites flying. See more of you all. Make more Periodic Tables. Get my computer fixed - mac owners may know the problem: flashing ? mark on grey screen. Eeek! Worse case scenario is a corrupted hard drive and loss of everything. Oh my, raining and pouring!
Today though is beautiful blue, clear and still. Car past MOT this morning. Driving back from Brixton I notice there are still some stunning autumn colours around. Must be all the rain we had last summer. Lots of trees empty now though, crooked skeletal branches. I love trees without leaves - a body stripped bare and all the internal structures on view. Luigi cooking some more wonderful italian dishes. He came back from Italy armed with recipes from friends - lots of grating lemon zest and beating of eggs. Polpette. Polenta. Succo di pomodori. We talk more about living in Venezia, with a studio out back and a gallery-shop in the front. We scheme and dream and plot the next few years while clattering round the kitchen. Two cats even! Poor Luigi, as heartbroken as me over the loss of Lilly. Meantime, all the work that was achieved in Havelock studio last month was worth the effort - sold the lot at the Affordable Art Fair. Success. High five Lulu and George!
In preparation for my sojourn at Kings I have gone a bit bonkers with my Amazon ordering: 5 pairs of new pyjamas (including leopard and zebra print), a duvet and 4 covers, a hooded dressing gown (heaven for my bald head) and a royal blue yoga rug (for bed, not bending). I also bought myself a lava lamp - hypnotic blue with yellow-floaty-lava-blobs (something to stare at when the brick wall view becomes too tiresome). I managed to break it almost immediately by putting on top of the radiator. The extra heat turned yellow-floaty-lava-blobs into a huge yellow string of solid motionless snot-like substance. Live and learn.
Hope everyone well and happy. Thanks for all your messages and visits and supper cooking! Greetings and love around the globe. And thank goodness for "No Drama Obama". Special hallo to everyone across the pond...
Back soon, and guaranteed to be still writing from Grassmount! tch
PS. All my body parts seems to be working ok, heart lungs and kidneys got through the round of tests successfully. Also had to grin and bear an unexpected bone marrow biopsy ten days ago...another apple corer moment!
Up until yesterday I was on a countdown for my admission to Kings - 7 days left and riding a daily roller-coaster of emotions. Nervous and waking early every morning knowing that another day was chalked off - but also really wanting to get in and get on with it. I have found the long wait stressful and exhausting - so in a weird kind of way I need to get started. However at my first Kings clinic appointment yesterday it became apparent, through conversation with the consultant, that some major administrative fuck-up has occurred (apologies to those readers who would use a more polite turn of phrase) - with the result that the transplant has no clear start date - but will "probably be sometime in early december". Needless to say I was furious. Fortunately my brother Richard had come along to the appointment as consent forms were due to be signed, so he was there too to add his penny worth of incredulity (is that grammatically correct I wonder?).
I will cut a long story short: before stem cells can be sent over from USA - funding has to be applied for and approved. This, as you can imagine, takes time - funding approval requires two weeks. Once funding approval is received then stem cell identification and safe passage can get underway. This requires a further two weeks. Only when cells have arrived and are in storage at Kings will they start the conditioning (ie start of chemo and radiotherapy). At yesterdays meeting it turned out that the letter for approval was only sent out last Monday. Its easy to do the maths... I am left wondering why it took so long to apply for funding, when they confirmed in September that I was to have a double cord stem cell transplant. Also seems the consultant had no idea I had been sent a letter on October 18th confirming that the treatment would start on 14th November.
How bloody inept. Lack of communication, no joined up writing, hopeless bureaucracy. My confidence in Kings has dropped through the floor. I told them this yesterday in a fury of tears "this is my life you are dealing with here - and so far you are fucking it up - are you going to treat me in the same way when I am up on the ward? How do I know you will give me the right dose of chemo? the appropriate medications?" There was silence in the consultation room. Of course I am told that the medical care I will receive will be excellent. And they apologise profusely for their incompetence and my case will be taken forward as "an incident". Sure, that makes me feel a whole lot better. Ha! My head spins. I am still in remission, and hopefully will still be in December but nevertheless there is a small risk that relapse could happen before then. In which case I could not have the transplant. Chaos. This also impacts on family and friends who are first hand supporting me through this. And Luigi arrived back from Italy last week too, ready for the off. Now we are all on "hold".
So I came home, crawled under my New York rug, ate a fat chocolate eclair and drank a big red mug of tea. Over the past few weeks I had managed to get myself psyched up and reasonably emotionally prepared (not an easy feat) and to suddenly be told that it is not happening has really unsettled me. It feels a bit like an emergency stop in a car - wham, jerk, freeze. Thank god I always wear seat-belts. There is a strange kind of cruelty in the whole thing. To be so close to something I was not looking forward to, and now to have it put back only means putting off the inevitable even longer. Not good for my head.
However, clouds have silver linings. At least I have a bit more breathing space and can now do a whole list of things that were going to be impossible to achieve: See Skyfall. Visit Royal Academy for the Bronze exhibition. Go to Camber for a windy walk over the dunes. Watch the kites flying. See more of you all. Make more Periodic Tables. Get my computer fixed - mac owners may know the problem: flashing ? mark on grey screen. Eeek! Worse case scenario is a corrupted hard drive and loss of everything. Oh my, raining and pouring!
Today though is beautiful blue, clear and still. Car past MOT this morning. Driving back from Brixton I notice there are still some stunning autumn colours around. Must be all the rain we had last summer. Lots of trees empty now though, crooked skeletal branches. I love trees without leaves - a body stripped bare and all the internal structures on view. Luigi cooking some more wonderful italian dishes. He came back from Italy armed with recipes from friends - lots of grating lemon zest and beating of eggs. Polpette. Polenta. Succo di pomodori. We talk more about living in Venezia, with a studio out back and a gallery-shop in the front. We scheme and dream and plot the next few years while clattering round the kitchen. Two cats even! Poor Luigi, as heartbroken as me over the loss of Lilly. Meantime, all the work that was achieved in Havelock studio last month was worth the effort - sold the lot at the Affordable Art Fair. Success. High five Lulu and George!
In preparation for my sojourn at Kings I have gone a bit bonkers with my Amazon ordering: 5 pairs of new pyjamas (including leopard and zebra print), a duvet and 4 covers, a hooded dressing gown (heaven for my bald head) and a royal blue yoga rug (for bed, not bending). I also bought myself a lava lamp - hypnotic blue with yellow-floaty-lava-blobs (something to stare at when the brick wall view becomes too tiresome). I managed to break it almost immediately by putting on top of the radiator. The extra heat turned yellow-floaty-lava-blobs into a huge yellow string of solid motionless snot-like substance. Live and learn.
Hope everyone well and happy. Thanks for all your messages and visits and supper cooking! Greetings and love around the globe. And thank goodness for "No Drama Obama". Special hallo to everyone across the pond...
Back soon, and guaranteed to be still writing from Grassmount! tch
PS. All my body parts seems to be working ok, heart lungs and kidneys got through the round of tests successfully. Also had to grin and bear an unexpected bone marrow biopsy ten days ago...another apple corer moment!
Sunday, 28 October 2012
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
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
Wednesday, 17 October 2012
GONE BUT NOT FORGOTTEN
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
Monday, 1 October 2012
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
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
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