Sunday, 30 December 2012
STILL DROPPING
Very quick blog update as I am ridiculously tired. Feel I been hit over the head with a sledge hammer. Counts still falling. Wish I had someway to put the brakes on, but all I can do is hang out and wait. As one of the doctors said, everything is working at a cellular level and beyond my control. It's a horrible position to be in. Am just about to start a stint of 12 hours or so of 'nil by mouth". Some point tomorrow they will be performing the endoscopy. Though I don't think I need it. But, hey, what do I know... Whoops feeling a bit cranky this evening. Not got out of bed for two days. Seen no sky. Hair dropping out. Pillow full of it. Chemo head starting to appear. Another new thing to appear is a high heart rate. But still managing to stay infection free. Hope at least I can keep that up for the new year. Talking of which, when the midnight strikes tomorrow, happy new year to all. Lets hope 2013 brings the best for everyone. Bed for me now. Greetings and love. Back soon. tch xx
Thursday, 27 December 2012
MINEFIELD EXPLOSION
Hi All,
Been a few days since last entry. Things have gone a bit pear shaped. Unfortunately, since Christmas Day my blood counts have started to fall, reversing the trend that had resulted in such a positive start to the SCT. The drop has dampened the Christmas sparkle somewhat.
My white blood counts and neutrophils dropped quite dramatically on Christmas Day: neutrophils down from 1.46 (which is almost normal level) to 0.08 and white cells from 1.77 to 1.1 Since then the drop has continued but by less dramatic increments. My neutrophils as of this morning are 0.05 and white cells, 0.86. Doctors cannot give me any reason for this sudden reversal in fortune. It may be that baby number 2 is putting up a bit of a fight and wants to become the dominant graft cell...so maybe there is some internal struggle going on which has resulted in the lowering of my white cell/neutrophil count. It may be something more sinister. If drop continues they will have to investigate further. However I am hoping that the babies are just kicking off a bit and trying to determine which will be the dominant one. I should have a chimerism result in the next few days too, and that may shed some further light on what's going on. I will try and explain 'chimerism' in simple layman's terms: chimerism measures the percentages of the different blood groups that are currently moving around my system. The last test a few days ago, showed that there was 30% of baby no.1 blood group and 70% of my original A positive group. This is what prompted the medical team to suggest that early engraftment was already taking place. But perhaps that was too hasty a conclusion to draw (and raising my spirits stupidly high). Anyway, we shall see over the next week or so. The waiting to see if the stem cells have grafted is hard enough. To now be wondering why my counts are dropping too, makes things double tense. Focus on the positive: no infections. Praying to all of the Gods.
I am often bothered by odd pains in different parts of my body and still struggle with nausea. Loosing hair by the finger full and loosing a bit of weight too. However still managing to eat Luigi's nourishing soups everyday. I walk up and down the 'quarter-deck' for five to ten minutes daily. It is my only glimpse of the outside world: an empty Ruskin Park, save for the odd dog walker. I see the sky though the tangle of bare winter branches. Sometimes I see the odd light twinkling from the houses on the far side of the park. The other day I glimpsed a plane too. That was a treat! It is tough to only look onto a brick wall. My thoughts bounce around like a wild ball in a squash court. Round and round. Side to side. Bang bang. No way out. No exit. Exhausting.
I worked out today that I have been at Kings for over three weeks now. The time has gone by so quickly. It has not yet been the nightmare I was expecting, so in many ways I have been really lucky. But I dream sad dreams of Lilly. Too often. Woke in tears one morning. I get to feeling blue sometimes. While other days I am longing to be out and working in the studio. I find myself building plans for new ideas, things to develop when I am out of here. That makes me feel excited and raring to go. Although I have little physical energy at least my brain has still got some umpfh...
Hope everyone had good seasonal festivities and now enjoying a wind down before the last blitz of the year. Thanks for all your many christmas messages and cards - as ever, great to hear from you all. Keeps my spirit afloat!
Hope next time I update the blog it will be with brighter news. Glum doesn't make for such good reading, I know.
Hugs around the globe. A presto tutti. Back soon, tchxx
Been a few days since last entry. Things have gone a bit pear shaped. Unfortunately, since Christmas Day my blood counts have started to fall, reversing the trend that had resulted in such a positive start to the SCT. The drop has dampened the Christmas sparkle somewhat.
My white blood counts and neutrophils dropped quite dramatically on Christmas Day: neutrophils down from 1.46 (which is almost normal level) to 0.08 and white cells from 1.77 to 1.1 Since then the drop has continued but by less dramatic increments. My neutrophils as of this morning are 0.05 and white cells, 0.86. Doctors cannot give me any reason for this sudden reversal in fortune. It may be that baby number 2 is putting up a bit of a fight and wants to become the dominant graft cell...so maybe there is some internal struggle going on which has resulted in the lowering of my white cell/neutrophil count. It may be something more sinister. If drop continues they will have to investigate further. However I am hoping that the babies are just kicking off a bit and trying to determine which will be the dominant one. I should have a chimerism result in the next few days too, and that may shed some further light on what's going on. I will try and explain 'chimerism' in simple layman's terms: chimerism measures the percentages of the different blood groups that are currently moving around my system. The last test a few days ago, showed that there was 30% of baby no.1 blood group and 70% of my original A positive group. This is what prompted the medical team to suggest that early engraftment was already taking place. But perhaps that was too hasty a conclusion to draw (and raising my spirits stupidly high). Anyway, we shall see over the next week or so. The waiting to see if the stem cells have grafted is hard enough. To now be wondering why my counts are dropping too, makes things double tense. Focus on the positive: no infections. Praying to all of the Gods.
I am often bothered by odd pains in different parts of my body and still struggle with nausea. Loosing hair by the finger full and loosing a bit of weight too. However still managing to eat Luigi's nourishing soups everyday. I walk up and down the 'quarter-deck' for five to ten minutes daily. It is my only glimpse of the outside world: an empty Ruskin Park, save for the odd dog walker. I see the sky though the tangle of bare winter branches. Sometimes I see the odd light twinkling from the houses on the far side of the park. The other day I glimpsed a plane too. That was a treat! It is tough to only look onto a brick wall. My thoughts bounce around like a wild ball in a squash court. Round and round. Side to side. Bang bang. No way out. No exit. Exhausting.
I worked out today that I have been at Kings for over three weeks now. The time has gone by so quickly. It has not yet been the nightmare I was expecting, so in many ways I have been really lucky. But I dream sad dreams of Lilly. Too often. Woke in tears one morning. I get to feeling blue sometimes. While other days I am longing to be out and working in the studio. I find myself building plans for new ideas, things to develop when I am out of here. That makes me feel excited and raring to go. Although I have little physical energy at least my brain has still got some umpfh...
Hope everyone had good seasonal festivities and now enjoying a wind down before the last blitz of the year. Thanks for all your many christmas messages and cards - as ever, great to hear from you all. Keeps my spirit afloat!
Hope next time I update the blog it will be with brighter news. Glum doesn't make for such good reading, I know.
Hugs around the globe. A presto tutti. Back soon, tchxx
Monday, 24 December 2012
DECK MY DRIP STAND...
Quick Christmas message to everyone to say hope you have a merry time, full of feasting and fun. Hope too, all uk blog-followers will mange to remain dry and not have to spend Christmas Day in wellingtons bailing out bucket loads of water...
Update from Room No.9 is that I didn't need to have either procedures today. Good Christmas present! Possibly may have to have them further down the line, but for the time being bye bye colonoscopy and endonoscopy. Sounds like a pair of terrible twins. My consultant informed me today that it looks like grafting is already taking place. Highly unusual for a double cord blood transplant to graft so early, normally takes 21 to 35 days. I think: wow, all those positive vibes and prayers and candle lighting is really doing the trick...I also think: eek! panic! why has it happened so quickly, does that mean there's something wrong?
I am still under the status of 'watching and waiting' for GVHD. I am being closely monitored so they can take appropriate action at first sign of any organ attack. Today had a really bad heart burn, which just came from nowhere and had me shouting out in pain. They strapped me up to an ECG monitor to check my heart was still in full working order. Which of course it was. I swallowed a huge mouthful of the thick sloopy aniseed stuff (hospital version of gaviscon) and within 40 minutes things had calmed down. I hope to god GVHD doesn't attack my digestive tract, as that would be very painful to deal with.
Scalp starting to hurt and get sore. I notice too the first sign of my hair starting to fall out again. I had hoped I would pass this side effect by, but seems that yet again I will be donning a range of cashmere beanies for a couple of months. They tell me that after TBI hair grows back thinner. Though for those of you who know me well, that may not notice much...
Thanks to so many friends and family, near and far, for all your amazing support over the last six months. I know that every ounce has helped me on this long road to recovery. As we turn into Christmas and with 2013 just round the corner, I am feeling very positive about the future. I know I am still in the minefield and chance I may trip up a couple of times as time goes on, but with your continuing support...I just got a good feeling inside.
Much love this Christmas Eve. tch x
ps. check this link out: http://youtu.be/GwRRebTOvWY thanks havelock walkers...
Update from Room No.9 is that I didn't need to have either procedures today. Good Christmas present! Possibly may have to have them further down the line, but for the time being bye bye colonoscopy and endonoscopy. Sounds like a pair of terrible twins. My consultant informed me today that it looks like grafting is already taking place. Highly unusual for a double cord blood transplant to graft so early, normally takes 21 to 35 days. I think: wow, all those positive vibes and prayers and candle lighting is really doing the trick...I also think: eek! panic! why has it happened so quickly, does that mean there's something wrong?
I am still under the status of 'watching and waiting' for GVHD. I am being closely monitored so they can take appropriate action at first sign of any organ attack. Today had a really bad heart burn, which just came from nowhere and had me shouting out in pain. They strapped me up to an ECG monitor to check my heart was still in full working order. Which of course it was. I swallowed a huge mouthful of the thick sloopy aniseed stuff (hospital version of gaviscon) and within 40 minutes things had calmed down. I hope to god GVHD doesn't attack my digestive tract, as that would be very painful to deal with.
Scalp starting to hurt and get sore. I notice too the first sign of my hair starting to fall out again. I had hoped I would pass this side effect by, but seems that yet again I will be donning a range of cashmere beanies for a couple of months. They tell me that after TBI hair grows back thinner. Though for those of you who know me well, that may not notice much...
Thanks to so many friends and family, near and far, for all your amazing support over the last six months. I know that every ounce has helped me on this long road to recovery. As we turn into Christmas and with 2013 just round the corner, I am feeling very positive about the future. I know I am still in the minefield and chance I may trip up a couple of times as time goes on, but with your continuing support...I just got a good feeling inside.
Much love this Christmas Eve. tch x
ps. check this link out: http://youtu.be/GwRRebTOvWY thanks havelock walkers...
christmas eve visitation: Lulu, Julian and LuigiFriday, 21 December 2012
TWO FRENCH HENS AND A ROBIN
Yoh ho! Merry Christmas to everyone reading the blog...hope you all have a jolly festive season full of glitter and sparkle...Things shifting here a bit. Nausea returned. Sore eyes. Painful headaches. Bit of a skin rash. I have been told that this may be the start of GVHD (graft versus host disease). Waiting to see, but feeling rough round the edges. If it is I will be slapped onto steroids. And they will make my face into a moon... Chest X-ray in the middle of the night. Great timing. Sitting in xray department (with bloodied A&E patients) in my spotty hooded dressing-gown and face mask. A three minute procedure took an hour of waiting. I was shattered when I got back to the ward. May have to have an endonoscopy and colonoscopy on Christmas Eve, depending on the development of GVHD. That will be a first then. Normally I am listening to carols on radio 4 and waiting for snow. Good luck with the last bit of seasonal chaos. Soon you can relax and just enjoy. Chill. Freeze.
Back soon. tch xx
Back soon. tch xx
Monday, 17 December 2012
STILL STANDING
Today is day plus 6 and I should be, by rights, knocking on the gates of hell. However, I am lying back reasonably comfortably, in my leopard print pyjamas, on my kingfisher blue duvet. I have been playing with a new iPad app, first result can be seen below... Apart from the palms of my hands and soles of my feet burning and red, especially when in contact with water, I have not had to contend with too much misery. The consultant has just been in and seems pleased with my progress. My neutrophils are already showing signs of recovery apparently (I am gob-smacked by this news). I have to wait a bit longer to see if I will get knocked out by any of the side effects of chemo/ TBI...but pleased to report that the nausea is under control and I have a reasonable appetite ( I have just discovered the 'ethnic menu' and had a mean chicken and lentil curry last night). It is now just a waiting game to see if the baby stem cells take to their new environment. By my calculation we should know around the 1st January. Lets hope it's a brighter than bright start to the new year.
I am managing to walk a little bit everyday: down along the ward to the long thin room where a bank of curving windows look out onto the railway line and then into Ruskin Park. Beyond the tennis courts there is a beautiful old oak tree, shaped like a magnificent mushroom. Its stark dark silhouette framed by soft winter light. It gives me great pleasure to shuffle down to this room (I call it the quarter- deck) to check out the park and get a 5 minute hit of sunshine - but it totally exhausts me. By the time I get back onto my bed I am shattered. But I try to do it everyday. And Janet, I will look out for you and Poppy. You never know!
Mel, Cathy and Amanda all visited over the weekend. A. gave me a send-to-sleep reflexology treatment. I was in heaven. Listening to my favourite winter song, Jack Frost (waterson/ carthy, Holy Heathens and the Old Green Man), check it out you all. It's different, beautiful and captures the bleak December landscape. Thanks too Mel and Cathy for my Christmas decorations. My room is really beginning to look like home - well, at a push.
Writing is knackering me, so going to keep this a short entry. Hope everyone is well and getting cranked up into the Christmas spirit. Ho ho ho! Big hallo to you all and special greetings to Team Harlow (focusing on my trip to Old Trafford; talk about carrot and stick!). Meantime I need collective positive thought waves to travel to my babies. So amidst all the festive madness please send quiet encouragement. They gotta graft.
Much love to all. Back soon. tch xxx
I am managing to walk a little bit everyday: down along the ward to the long thin room where a bank of curving windows look out onto the railway line and then into Ruskin Park. Beyond the tennis courts there is a beautiful old oak tree, shaped like a magnificent mushroom. Its stark dark silhouette framed by soft winter light. It gives me great pleasure to shuffle down to this room (I call it the quarter- deck) to check out the park and get a 5 minute hit of sunshine - but it totally exhausts me. By the time I get back onto my bed I am shattered. But I try to do it everyday. And Janet, I will look out for you and Poppy. You never know!
Mel, Cathy and Amanda all visited over the weekend. A. gave me a send-to-sleep reflexology treatment. I was in heaven. Listening to my favourite winter song, Jack Frost (waterson/ carthy, Holy Heathens and the Old Green Man), check it out you all. It's different, beautiful and captures the bleak December landscape. Thanks too Mel and Cathy for my Christmas decorations. My room is really beginning to look like home - well, at a push.
Writing is knackering me, so going to keep this a short entry. Hope everyone is well and getting cranked up into the Christmas spirit. Ho ho ho! Big hallo to you all and special greetings to Team Harlow (focusing on my trip to Old Trafford; talk about carrot and stick!). Meantime I need collective positive thought waves to travel to my babies. So amidst all the festive madness please send quiet encouragement. They gotta graft.
Much love to all. Back soon. tch xxx
Friday, 14 December 2012
ROOM WITH A VIEW
Well, here it is...my inspirational view! This is what I have to stare out at everyday...thank goodness we are in mid winter and the days are short, once the dark comes down it all disappears. If there is sun, there is a bright patch of light that moves across the brickwork between 10.30 and 11.30. I bet those incarcerated in Pentonville get a better deal than this!
Internally the room is better. Big bonus is a large flat screen tv with a good range of channels. Thank goodness, as tv/radio is a bit of a life saver. Apparently a former leukaemia patient funded tv's to be put in all 3 transplant wards. What a genius! I have my lava lamp (ordered a second one after the disaster with the first). It is currently turning out slow yellow blobs floating like baby manta rays in blue green water (tho more likely to be some foul cancerous liquid thinking about it).
Wendy gave me Christmas lights which are draped over an abstract print of Venice (donated by Art in Hospitals). Venice, "of all the towns" etc etc, another strange coincidence. Lu gave me paper chains to hang and am sticking christmas cards on the wall too. Anything to soften the medical edge of this room.
Physically, feeling continuously very sick. They put me on a sub-cutaneous "push" of anti-emetics yesterday to try and get the nausea under control. It's reduced it a bit. But too easy to forget I have this thing sitting inside my arm, and I am constantly pulling on it. Ouch. I have still got enough energy to walk up and down the corridor of the transplant unit for ten minutes. Good exercise. Though I look a sight with my hooded spotted dressing gown and face mask. There is a window at the end that looks out over the railway line and directly onto Ruskin Park. I see winter trees and dog walkers. Hair still in but due to fall out in the next two weeks. I get odd powerful stomach rumbles and sharp pains. I pee continuously. I have to wear special flattering stockings to prevent DVT. I am attached to my drip stand 24 hours a day. 3 pumps clamped to it. I get glucose, saline, potassium, sodium, magnesium (electrolytes - I am learning my stuff), anti-rejection drugs, anti-viral drugs...soon I will add platelets, blood and antibiotics to the list. Hopefully though, not food. Really don't fancy being tube fed. Me and my shadow. Just have to live with it for the next few weeks.
Pretty much though I am feeling ok. I may get lucky and not get too many side effects. The gates of hell are due to drag open around the end of this weekend. Normally 7 days after TBI the body reacts - mouth, gut, bum. Ooh, fun to look forward to...
Luigi putting his Italian cooking skills to best use. He made me some delicious broth with fresh chicken and vegetables, sieved down till it became a clear honey coloured liquid. Every warm mouthful felt like the best medicine, even though my taste buds are on the way out.
I am going to stare at tv now. Thanks for all the messages that are still tipping in. I swear all this positive thinking, vibes, prayers and candle lighting is really working. I am sure me and my new stem cells are going to get along together just fine. We are being buoyed along by you all. Big love and thanks to everyone, everywhere. Back soon tch xxx
PS some people been asking how to contact me. Best not to send via the hospital but to my house. I have my personal postie who comes by everyday.
2 Grassmount, Forest Hill, London SE23 3UW
Internally the room is better. Big bonus is a large flat screen tv with a good range of channels. Thank goodness, as tv/radio is a bit of a life saver. Apparently a former leukaemia patient funded tv's to be put in all 3 transplant wards. What a genius! I have my lava lamp (ordered a second one after the disaster with the first). It is currently turning out slow yellow blobs floating like baby manta rays in blue green water (tho more likely to be some foul cancerous liquid thinking about it).
Wendy gave me Christmas lights which are draped over an abstract print of Venice (donated by Art in Hospitals). Venice, "of all the towns" etc etc, another strange coincidence. Lu gave me paper chains to hang and am sticking christmas cards on the wall too. Anything to soften the medical edge of this room.
Physically, feeling continuously very sick. They put me on a sub-cutaneous "push" of anti-emetics yesterday to try and get the nausea under control. It's reduced it a bit. But too easy to forget I have this thing sitting inside my arm, and I am constantly pulling on it. Ouch. I have still got enough energy to walk up and down the corridor of the transplant unit for ten minutes. Good exercise. Though I look a sight with my hooded spotted dressing gown and face mask. There is a window at the end that looks out over the railway line and directly onto Ruskin Park. I see winter trees and dog walkers. Hair still in but due to fall out in the next two weeks. I get odd powerful stomach rumbles and sharp pains. I pee continuously. I have to wear special flattering stockings to prevent DVT. I am attached to my drip stand 24 hours a day. 3 pumps clamped to it. I get glucose, saline, potassium, sodium, magnesium (electrolytes - I am learning my stuff), anti-rejection drugs, anti-viral drugs...soon I will add platelets, blood and antibiotics to the list. Hopefully though, not food. Really don't fancy being tube fed. Me and my shadow. Just have to live with it for the next few weeks.
Pretty much though I am feeling ok. I may get lucky and not get too many side effects. The gates of hell are due to drag open around the end of this weekend. Normally 7 days after TBI the body reacts - mouth, gut, bum. Ooh, fun to look forward to...
Luigi putting his Italian cooking skills to best use. He made me some delicious broth with fresh chicken and vegetables, sieved down till it became a clear honey coloured liquid. Every warm mouthful felt like the best medicine, even though my taste buds are on the way out.
I am going to stare at tv now. Thanks for all the messages that are still tipping in. I swear all this positive thinking, vibes, prayers and candle lighting is really working. I am sure me and my new stem cells are going to get along together just fine. We are being buoyed along by you all. Big love and thanks to everyone, everywhere. Back soon tch xxx
PS some people been asking how to contact me. Best not to send via the hospital but to my house. I have my personal postie who comes by everyday.
2 Grassmount, Forest Hill, London SE23 3UW
Wednesday, 12 December 2012
WELCOME TO MY WORLD
So my new baby stem cells have finally made it to their new home. It was a quiet and unobtrusive arrival. Just me and Nurse Tara (and for a while a cleaning lady, who I swore took double her normal time, hanging out with her broom and purple plastic bags). I took photos on my phone, to post onto here, but crap signal stops my photostream from working. This is what I know: Baby No. One, born 4 may 2007, St. Louis, Missouri. Baby No. Two, born 1 May 2009 somewhere in Maryland. I hummed lullabys as the blood dripped into my system. Songs that my own mother had sung to me (skye boat song, hush little baby). Also realized too that my transplant date, 11th December, is also the 10th anniversary of the death of mum. That is bizarre, an unbelievable coincidence and a positive connection.
Today I am feeling pretty rough and very sick. So this is as much as I can manage...
Back soon. Love to everyone. tch x
babies arriving...
Today I am feeling pretty rough and very sick. So this is as much as I can manage...
Back soon. Love to everyone. tch x
Monday, 10 December 2012
TOTAL BODY IRRADIATION
Quickest update as so tired. Trust me, never have this process. I was stripped virtually naked, sat on some chaise longue-ish type of contraption, electric nodes stuck all over my body. I was then packed with lasagne type material (bulious?) which was rolled and squeezed into all the cracks and crevices around my body, from head to foot. So I be made into a solid square shape. Had to wear a very heavy jacket type thing that was filled with slabs of this hard jelly like substance to protect my lungs. Then everyone disappears and a I am left to be zapped with TBI. The room this takes places in, far from being shiney and high tech with state of the art machinery, resembles a 5th form locker room. Odd bits and pieces seemingly left randomly about: some thing that looks like a large body board leant up against the wall, a pile of books all higgildy piggildy, boxes of paper towels, chairs stacked in a corner... even the thick lead square that has to be hung near the back of my head, is held up with washing line and adjustable knots. Honestly, the whole thing feels like something my brother and I would have knocked up in dads garage - Heath Robinson style.
I am blasted both sides for about twenty minutes. I have to remain totally still throughout. Difficult with a the jelly weight hanging off my chest. I concentrate on my breathing. At one point I swear I feel a nano second of high pitched electric volt pass through me and I see a flash of my skeleton, pure white bones. I guess thats just my mind playing tricks. More breathing. There is a camera pointing down at me. Locked away in a safe room, the medical team are tracking my every move. Then it's over. Everyone reappears and I am disassembled, lasagne packs pulled away, jelly chest protectors hauled off. Then everyone vanishes into thin air and I am left alone to dress. They don't score high on communication points. I find Luigi and within about twenty minutes we are taxied back to Kings. For those of a sensitive disposition don't read further...
Three minutes before we make it back to the hospital I am heaving up in the back of the taxi (had the forsight to bring cardboard sick bowls). And so a horrid, uncomfortable and exhausting afternoon begins. I am in and out of bed, head stuck into cardboard bowls for most of the afternoon. Half way through my bum decides to give away spectacularly too. Oh lordy, what a mess this is turning out to be! Nurses fill me with seemingly every anti-nemetic known to man. Nothing much helps. Even my upmarket consultant comes in and sits on the bed rubbing my back as a heave up yellow bile for the sixth time. "How sweet and caring" I manage to think though my blur and moan. She sharp cookie too and prescribes me something that reducers the sickness but more importantly puts me whack out to sleep for three hours. I wake and see Luigi at the end of the bed. I manage to eat half a cheese sandwich and a yogurt.
This is my first few feet into the mine-field. No going back now. Only way is forward. Keep shouting from the sidelines you all. Much love and off for more desperate sleep.
High 5 round the world, so great to hear both international voices and local voices.
tch xx
I am blasted both sides for about twenty minutes. I have to remain totally still throughout. Difficult with a the jelly weight hanging off my chest. I concentrate on my breathing. At one point I swear I feel a nano second of high pitched electric volt pass through me and I see a flash of my skeleton, pure white bones. I guess thats just my mind playing tricks. More breathing. There is a camera pointing down at me. Locked away in a safe room, the medical team are tracking my every move. Then it's over. Everyone reappears and I am disassembled, lasagne packs pulled away, jelly chest protectors hauled off. Then everyone vanishes into thin air and I am left alone to dress. They don't score high on communication points. I find Luigi and within about twenty minutes we are taxied back to Kings. For those of a sensitive disposition don't read further...
Three minutes before we make it back to the hospital I am heaving up in the back of the taxi (had the forsight to bring cardboard sick bowls). And so a horrid, uncomfortable and exhausting afternoon begins. I am in and out of bed, head stuck into cardboard bowls for most of the afternoon. Half way through my bum decides to give away spectacularly too. Oh lordy, what a mess this is turning out to be! Nurses fill me with seemingly every anti-nemetic known to man. Nothing much helps. Even my upmarket consultant comes in and sits on the bed rubbing my back as a heave up yellow bile for the sixth time. "How sweet and caring" I manage to think though my blur and moan. She sharp cookie too and prescribes me something that reducers the sickness but more importantly puts me whack out to sleep for three hours. I wake and see Luigi at the end of the bed. I manage to eat half a cheese sandwich and a yogurt.
This is my first few feet into the mine-field. No going back now. Only way is forward. Keep shouting from the sidelines you all. Much love and off for more desperate sleep.
High 5 round the world, so great to hear both international voices and local voices.
tch xx
Sunday, 9 December 2012
SUNDAY DAY MINUS 2
God this is foul. Unbelievably tired. Horrible nausea and sickness. All stuff they managed to successfully combat at Guys. Worst chemo so far. Least as yet I don't have dry gloopy mouth, but that may come next week. Tomorrow is TBI day. Dreading it. That will really mess my body up. It going to destroy the lining of my mouth, gut and bowel. And will put me at high risk of infection until my new cells start to work, which will take about 3 weeks. Too tired now.
Back soon tch xx
Back soon tch xx
Wednesday, 5 December 2012
AT THE EDGE OF THE MINEFIELD
In at last! After waiting all day for a call from the bed manager, finally got here last night at 8pm. Luisa drove us down. The car filled with bags. Seem to have brought everything but the kitchen sink, including: duvet, rug, pillow, radio, barley water and peppermint tea... Hard leave the house, knowing what I am headed for. At least this time I am not leaving Lilly behind. We drive down Lordship Lane, shiny with Christmas lights. That's the last of those I will see this year.
I am on Davidson ward. Temporarily. Sharing a room with another woman who is also waiting for a transplant. She has already been here a few weeks. Her partner is a huge square man with a shiny bald head and a thick neck. His t shirt stretches tight over his wide torso. He is covered from head to foot with red and blue swirling tattoos. He has a big smile. Luigi and Lu help me to unpack. Lu has made me banana and poppy seed cake. I sit on the bed and eat a huge slice. Soon my appetite will diminish and my taste buds will disappear for months.
My support systems slip away into the night. I put on star print pyjamas and climb under my duvet with a new "air force blue" cover. My neighbour watches some terrible murder documentary. Even if I don't look I can still hear the vivid gory details. Ghastly TV. Nurse Issie comes by and re- dresses my Hickman line. Then she takes some blood. 4 tubes. Dark red, like cranberry juice. The bungs are cleaned with antiseptic wipes. As the smell hits my nostrils it all seems so horribly familiar. I sigh inwardly. Here we go again. The clinical routine. Months of it. Least I sleep well.
Today is officially known as Day minus 7. This is first day of chemo. I have 5 days of it. Followed by total body irradiation on day minus 1 and on day zero I get the transplant. It feels weird. My immune system being poisoned and zapped to bits, and then two new baby immune systems being pumped into me. I liken it to an oil change in a car. Get rid of all the dirty old slumpy stuff, and pour in clean shiny oil. If all goes according to plan, that should eventually get the engine working again. Now of course I am feeling well and it seems crazy that I am voluntarily about to undertake a procedure that is going to make me really ill. Who in their right mind would do that!
I am told the chemo is similar to the FlaGida that I had in the summer. Don't know how soon I will feel the effects. But it starts this afternoon. The registrar came round early this morning giving me the final consent form to sign. My folliculitus (spelt wrong, but official name and better sounding than boil-on-the-bum) has cleared up. I have ulcers on my tongue. A combination of stress and too much chocolate. I can't remember if I already said, but bone marrow results show I am still in remission. So ready for the off. I feel like I am standing on the edge of a minefield. It's very foggy up ahead and I have no idea what I am going to encounter. All I know is that I am going to be ducking and diving for a good few months while I negotiate this tricky landscape.
I look forward to getting into my own room soon as. This one has NO VIEW, only the white corrugated walls of a five story portacabin, which is literally six foot away. No natural light at all. If I could open the windows, I could touch it. However, so far everyone seems very friendly. Today they are 3 nurses down, so they are busy-billy-wizz-style. Hope that doesn't compromise on care when it's needed. A small but important note, is that tea is served in real mugs, not white polystyrene cups like at Guys. What a relief.
It's 1.15. I am waiting for Luigi to arrive. Followed by chemo. Thanks for all the messages that have been tumbling in over this week. I so appreciate all the support. It is an essential part of my armor for the months ahead. Also, old St Mary's friends, who are you? would love to know and thanks for the messages. Sister of Roz, Brina? Yes I do remember you!
Back soon, chemoed-up. Love to all tch xx
I am on Davidson ward. Temporarily. Sharing a room with another woman who is also waiting for a transplant. She has already been here a few weeks. Her partner is a huge square man with a shiny bald head and a thick neck. His t shirt stretches tight over his wide torso. He is covered from head to foot with red and blue swirling tattoos. He has a big smile. Luigi and Lu help me to unpack. Lu has made me banana and poppy seed cake. I sit on the bed and eat a huge slice. Soon my appetite will diminish and my taste buds will disappear for months.
My support systems slip away into the night. I put on star print pyjamas and climb under my duvet with a new "air force blue" cover. My neighbour watches some terrible murder documentary. Even if I don't look I can still hear the vivid gory details. Ghastly TV. Nurse Issie comes by and re- dresses my Hickman line. Then she takes some blood. 4 tubes. Dark red, like cranberry juice. The bungs are cleaned with antiseptic wipes. As the smell hits my nostrils it all seems so horribly familiar. I sigh inwardly. Here we go again. The clinical routine. Months of it. Least I sleep well.
Today is officially known as Day minus 7. This is first day of chemo. I have 5 days of it. Followed by total body irradiation on day minus 1 and on day zero I get the transplant. It feels weird. My immune system being poisoned and zapped to bits, and then two new baby immune systems being pumped into me. I liken it to an oil change in a car. Get rid of all the dirty old slumpy stuff, and pour in clean shiny oil. If all goes according to plan, that should eventually get the engine working again. Now of course I am feeling well and it seems crazy that I am voluntarily about to undertake a procedure that is going to make me really ill. Who in their right mind would do that!
I am told the chemo is similar to the FlaGida that I had in the summer. Don't know how soon I will feel the effects. But it starts this afternoon. The registrar came round early this morning giving me the final consent form to sign. My folliculitus (spelt wrong, but official name and better sounding than boil-on-the-bum) has cleared up. I have ulcers on my tongue. A combination of stress and too much chocolate. I can't remember if I already said, but bone marrow results show I am still in remission. So ready for the off. I feel like I am standing on the edge of a minefield. It's very foggy up ahead and I have no idea what I am going to encounter. All I know is that I am going to be ducking and diving for a good few months while I negotiate this tricky landscape.
I look forward to getting into my own room soon as. This one has NO VIEW, only the white corrugated walls of a five story portacabin, which is literally six foot away. No natural light at all. If I could open the windows, I could touch it. However, so far everyone seems very friendly. Today they are 3 nurses down, so they are busy-billy-wizz-style. Hope that doesn't compromise on care when it's needed. A small but important note, is that tea is served in real mugs, not white polystyrene cups like at Guys. What a relief.
It's 1.15. I am waiting for Luigi to arrive. Followed by chemo. Thanks for all the messages that have been tumbling in over this week. I so appreciate all the support. It is an essential part of my armor for the months ahead. Also, old St Mary's friends, who are you? would love to know and thanks for the messages. Sister of Roz, Brina? Yes I do remember you!
Back soon, chemoed-up. Love to all tch xx
Monday, 3 December 2012
SHOWING OFF
 |
| Showing off my new hair. Soon it will all fall out - again! |
 |
| Showing off my Hickman Line. Put in today. Ouch! |
 |
| Hickman Line (detail) |
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
Wednesday, 19 September 2012
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
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
Sunday, 9 September 2012
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
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.
Tuesday, 28 August 2012
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
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
Tuesday, 21 August 2012
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
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
Saturday, 18 August 2012
TREADING WATER
Saturday: antibiotics finished! Platelets transfusion ongoing as I write. Blue sky and HOT outside. I have been managing to get out of bed and do a few turns of the ward corridor - that's the extent of my existence at the moment! But it's much needed exercise for my weakening muscles. At last feeling a bit more human. Will have 48 hours without antibiotics before they consider sending me home, but with luck and a fair wind I could be back at Grassmount on Monday afternoon...and hopefully stay there this time. However none of my blood counts have recovered, so neutrophils etc are 0.0 which still makes me very vulnerable to infection. Horrible old tightrope to negotiate. Hair still dropping and I am covered in peeling crocodile skin despite Luigi plastering me in Nivea cream everyday. What an attractive picture I paint! The filthy poison of chemo.
Global communications - I send hugs to you all - local London troops to far flung corners of Australia, Singapore Hong Kong, Cleveland Ohio, beloved Italia and all across the UK. Your messages of support (and menus TP) are always so welcome and keep my spirits afloat.
I believe the football season is about to kick off. I hope the signing of RVP will be enough to wrench the title back from City. The final day of last season will never be forgotten...those of you with football interest will know what I mean, the rest of you just yawn and pass this paragraph by.
I have a plan to be wheel-chaired round the lavender garden this pm. Some fresh air on my face. Luigi bringing my beautiful wide brimmed summer hat to keep the rays off my skin. Would prefer to be pitching a tent in East Prawle, counting rabbits and collecting firewood. But cant have everything! Exactly this time last year thats where we were. I swam in ice blue sea to try and fix my shoulder. We ate 'scream-for-cream-teas' almost everyday. Wore wellingtons a lot. Foggy mornings and high blue sky afternoons. Next year.
Salute tutti - a presto TCH
Global communications - I send hugs to you all - local London troops to far flung corners of Australia, Singapore Hong Kong, Cleveland Ohio, beloved Italia and all across the UK. Your messages of support (and menus TP) are always so welcome and keep my spirits afloat.
I believe the football season is about to kick off. I hope the signing of RVP will be enough to wrench the title back from City. The final day of last season will never be forgotten...those of you with football interest will know what I mean, the rest of you just yawn and pass this paragraph by.
I have a plan to be wheel-chaired round the lavender garden this pm. Some fresh air on my face. Luigi bringing my beautiful wide brimmed summer hat to keep the rays off my skin. Would prefer to be pitching a tent in East Prawle, counting rabbits and collecting firewood. But cant have everything! Exactly this time last year thats where we were. I swam in ice blue sea to try and fix my shoulder. We ate 'scream-for-cream-teas' almost everyday. Wore wellingtons a lot. Foggy mornings and high blue sky afternoons. Next year.
Salute tutti - a presto TCH
Thursday, 16 August 2012
COMING UP FOR AIR
Hallo all - still here! Been a long time...has been a rough and rocky road recently but I hope I am finally emerging out the other side. Last Friday 10th August I was sent home in the evening. I managed 12 hours and then it all went pear shaped. I was re-admitted with a temperature which soon became a fever. This signals neutropenic infection and I have been hooked up to hardcore antibiotics ever since. Lots of blood and platelets transfusions and virtually continual fluid drips. Forever hooked up to this machine that blinks green lights and beeps every time there is a 'downstream' blockage is exhausting. Like having a very annoying shadow that I can't switch off. Hair is starting to fall out so Luigi went to work on it this morning and now there is not much left to fall out. GI Joe. My days all blur into one continual shape. I hope soon they become separate again. More soon. tch
Wednesday, 8 August 2012
DOWN THE RABBIT HOLE
Hallo out there in the blogosphere. Going to have ago at writing a short sentence or four. Without wanting to feel too sorry for myself though, writing a handful of sentences is unbelievably hard work. And without egging the pudding, the last 9 days have been the hardest and most challenging of my 54 and a bit years. I had no idea just what this miserable poison was going to do to my system. When I have managed to sleep I have been riddled with disturbing nightmares, the sort that never finish and seem to go on repeating themselves incessantly in a feverish way. My mouth has been a disgusting mixture of claggy, gloopy and dry. I have dreamt of layer upon layer of thick unshaved old cow hide stuck together with rabbit glue (book artists, please note). I wake up and want to find mum to come and take it all away. But she isn't here and she can't. It is hell on wheels. And that is just the night time. While FlaG-bloody-ida was flowing deep through me I could not do anything except lay in a curled heap on the bed. No interest in anything, horrible nausea, no hunger, no thirst. Doing either is really hard work. Liquid takes on a strange shape and taste, so much so that I spit most of it out into hospital regulation Lotus Health and Hygene Tissues. Thats disgusting too. Ha! I think: I should be sitting under a wide westward sky strewn with pink and soft violet, on a wooden rocker, tartan shawl and an old spittoon. That would suit me fine and dandy. Cotton candy.
It's a bit too disturbing recounting all this. I have only managed to get out of bed today and moved from one corner of my ten foot isolation room to the other. I don't pace, I can't but I am very agitated and restless; my skin itches, my hair has had ten days sticking on end, so I look serious erasure head. It better all fall out after all this, getting it cut off an all. Spit some more. Pink sky. Let me drown in that sunset.
Beyond all this nightmare there has been Luigi. Constantly there. Twice a day. Micro managing me, attending to my every need no matter how small the blanket needs to be tucked or folded or tissues thrown. His patience is truly remarkable. Just simply my hero. And Lilly demanding his attention too.
Seems to have taken most of the evening writing this but has kept me blessedly occupied. Thanks to oh so many of you for healing thoughts and colours and messages and emails and blogs and texts. I have started to catch up on them. As ever, great to hear from you all. Oh and ps I am so missing the Olympics can't even wear my team gb shirt!
It's a bit too disturbing recounting all this. I have only managed to get out of bed today and moved from one corner of my ten foot isolation room to the other. I don't pace, I can't but I am very agitated and restless; my skin itches, my hair has had ten days sticking on end, so I look serious erasure head. It better all fall out after all this, getting it cut off an all. Spit some more. Pink sky. Let me drown in that sunset.
Beyond all this nightmare there has been Luigi. Constantly there. Twice a day. Micro managing me, attending to my every need no matter how small the blanket needs to be tucked or folded or tissues thrown. His patience is truly remarkable. Just simply my hero. And Lilly demanding his attention too.
Seems to have taken most of the evening writing this but has kept me blessedly occupied. Thanks to oh so many of you for healing thoughts and colours and messages and emails and blogs and texts. I have started to catch up on them. As ever, great to hear from you all. Oh and ps I am so missing the Olympics can't even wear my team gb shirt!
Saturday, 4 August 2012
Bloody awful
Dear all, thanks so much for blog messages, emails and texts. Always brilliant to hear from you. This chemo regime is totally wiping me out, hense lack of blog. Today I have managed a cup of tea and two biscuits. Great diet control, but not what I need. I want to be in Oban with Cathy and John,watching calm blue waters and seals. Back sometime. Tch
Wednesday, 1 August 2012
RETURN TO SAMARITAN WARD
Already Wednesday and Monday seems an age ago. My last thin slice of normality was sharing tea and croissant on the roof of Julian's car, parked in the sunshine in Guy's car park. We took photos like it was some crazy on-the-road holiday breakfast. If only. Too quick we said goodbye and then Luigi and I were swept up through the big circular moving doors into reception and made our way upstairs...
The day was long and painful. I had a picc line put into my left arm but the X-ray showed the tube had looped some where along my chest wall, so I had to have that removed and another one inserted into my right arm. 52cms it soft plastic tube snaking its way up through my arm to meet a central vein somewhere in my chest. Sorry for that detail for anyone squeamish. Arrived up on Samaritan ward at 4.30. Here an even more painful procedure of a bone marrow biopsy took place. Lots of swearing from me as a selection of needles and 'apple corers' were inserted. I did try to breath slow and deep, but was told I was going to hyper ventilate! Got to get this breathing rhythm right! The good thing about bone marrow stuff is once the procedure is finished the pain stops immediately, unlike my arms for which I had 'stereo' pain for nearly two days. Monday finished with a couple of chemo injections into my stomach. Small fry in comparison to all the other stuff.
Yesterday was a strange. I slept almost all day. Hugely exhausted with everything. I think it's just the reality of being back here in hospital hitting home. The smell that leaks into my nostrils, the sounds that invade my ears and my vision limited mostly to the four walls of my room. There is a window from which I can see a huge swath of south east london tower blocks and housing estates. Beyond those I can see the crystal palace mast but that is too close to home and makes me sad and homesick tinged. I try to divert myself by listening to the Olympics on the radio. They say gold medals should be won today... Back soon. tch
The day was long and painful. I had a picc line put into my left arm but the X-ray showed the tube had looped some where along my chest wall, so I had to have that removed and another one inserted into my right arm. 52cms it soft plastic tube snaking its way up through my arm to meet a central vein somewhere in my chest. Sorry for that detail for anyone squeamish. Arrived up on Samaritan ward at 4.30. Here an even more painful procedure of a bone marrow biopsy took place. Lots of swearing from me as a selection of needles and 'apple corers' were inserted. I did try to breath slow and deep, but was told I was going to hyper ventilate! Got to get this breathing rhythm right! The good thing about bone marrow stuff is once the procedure is finished the pain stops immediately, unlike my arms for which I had 'stereo' pain for nearly two days. Monday finished with a couple of chemo injections into my stomach. Small fry in comparison to all the other stuff.
Yesterday was a strange. I slept almost all day. Hugely exhausted with everything. I think it's just the reality of being back here in hospital hitting home. The smell that leaks into my nostrils, the sounds that invade my ears and my vision limited mostly to the four walls of my room. There is a window from which I can see a huge swath of south east london tower blocks and housing estates. Beyond those I can see the crystal palace mast but that is too close to home and makes me sad and homesick tinged. I try to divert myself by listening to the Olympics on the radio. They say gold medals should be won today... Back soon. tch
Sunday, 29 July 2012
COUNTING DOWN
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Friday, 27 July 2012
GOING FOR GOLD
Things are now picking up a pace - only a few days left before my return to Samaritan Ward. A visit to the day unit yesterday to discover my blood counts have dropped even further and I am now neutropenic. So no more havelock barbecues, or train rides or crowded places (though Luigi and I did do a quick sprint into sainsbury's this morning to pick up supplies for Lilly). Food boiled to a mush and everything must be pasteurised. Soft fruit, salad, eggs, soft cheeses etc, all off my menu for a while. Two days ago Lulu, Jan and I ate a colour-scape of fresh berries: raspberries, strawberries and blueberries, with fat white dollops of organic yogurt. Got in there just in time... Luigi arrived from Venezia yesterday. Am having to re-aquaint him with household gadgets - practical skills are not his forte! So good to have him here. Talk in Italian. Asparagus risotto tonight.
Bad news is that I have a rare tissue type (oh, so bloody typical) and despite world wide search, no donor match is showing up on the computer (perhaps it needs to be re-booted). This means they are now doing a search for "cord donors"(stem cells are taken from umbilical cords of new born babies) - and failing that, Adrian will be called upon to give me some of his stem cells (your best bunch Aid!) He is 5/10 match, but apparently there is a new research going on showing "promising results" for 5/10 sibling matches. So could be that my darling brother saves my life. This really all feels a bit much to take in. I had been told initially that a donor match should be reasonably easy. So I was totally unprepared for yesterdays news and my heart hit the floor at some speed when it was announced. Seems the tightrope I am walking is getting tauter by the day. No slippage allowed. All this information just drives my anxiety levels up. Warm, strong arms to rock me at least. I guess it will be best to get in and get started. What a marathon ahead. Puff x an awful lot more. I want to win gold. Infact, I must win gold.
Lots of you out there have said you would be happy to donate bone marrow. I don't think you can donate for me but you can sign up to Anthony Nolan Trust at http://www.anthonynolan.org or the British Bone Marrow Registry at http://www.nhsbt.nhs.uk/bonemarrow/ - if not my life, it will be someone else's you help to save. I will try and find out a bit more info. But this is a start. Over 50's need not apply - so that wipes out at least half of you!
Switching off from all things blood and bone marrow now. Off for a hair cut (before it all falls out) courtesy of the Sisters on Havelock Walk - thanks you all for your generosity and inspired idea! Then will plug into the Olympic Ceremony. When the London win was announced all those years ago, Luigi and I were in the car driving down the A303 heading for Croyde: sea, surf and summer camp. We had the radio on and the roof open. It was blazing blue and we hooped a big cheer and sounded the horn... so glad we cannot see into the future.
Bad news is that I have a rare tissue type (oh, so bloody typical) and despite world wide search, no donor match is showing up on the computer (perhaps it needs to be re-booted). This means they are now doing a search for "cord donors"(stem cells are taken from umbilical cords of new born babies) - and failing that, Adrian will be called upon to give me some of his stem cells (your best bunch Aid!) He is 5/10 match, but apparently there is a new research going on showing "promising results" for 5/10 sibling matches. So could be that my darling brother saves my life. This really all feels a bit much to take in. I had been told initially that a donor match should be reasonably easy. So I was totally unprepared for yesterdays news and my heart hit the floor at some speed when it was announced. Seems the tightrope I am walking is getting tauter by the day. No slippage allowed. All this information just drives my anxiety levels up. Warm, strong arms to rock me at least. I guess it will be best to get in and get started. What a marathon ahead. Puff x an awful lot more. I want to win gold. Infact, I must win gold.
Lots of you out there have said you would be happy to donate bone marrow. I don't think you can donate for me but you can sign up to Anthony Nolan Trust at http://www.anthonynolan.org or the British Bone Marrow Registry at http://www.nhsbt.nhs.uk/bonemarrow/ - if not my life, it will be someone else's you help to save. I will try and find out a bit more info. But this is a start. Over 50's need not apply - so that wipes out at least half of you!
Switching off from all things blood and bone marrow now. Off for a hair cut (before it all falls out) courtesy of the Sisters on Havelock Walk - thanks you all for your generosity and inspired idea! Then will plug into the Olympic Ceremony. When the London win was announced all those years ago, Luigi and I were in the car driving down the A303 heading for Croyde: sea, surf and summer camp. We had the radio on and the roof open. It was blazing blue and we hooped a big cheer and sounded the horn... so glad we cannot see into the future.
Tuesday, 24 July 2012
NUCLEAR MEDICINE
A blue door with single plaque reading "injection room". Highly inviting. Inside there is a large padded blue chair sitting starkly in the middle of the room. I think immediately of the Andy Warhol print "Electric Chair" (1964 - thanks google). I joke this with the nurses - who, smiling beguilingly, nod and say, "yes, other patients say the same thing"... "you seem a bit tense" noted the nurse with black rimmed glasses. Not half! Two injections - 20 minutes apart - one to prepare my veins (I hate having my veins prepared) and the second when radioactive fuel is administered. 4 nurses at this point. Its designed to make you nervous. Reading out of my details: confirmation of my DOB, hospital no Z458779 (that number is etched into my brain). All witnessed and signed. I am asked could I be pregnant or breast feeding...Oh Lord, give me a break! Do I look like I could be either of these things? I am sitting on the electric blue padded chair; the male Malaysian nurse has trouble finding a vein in the crook of my arm (this is due to thinning of my veins from previous chemo) - so heads for the back of my hand. Ouch! This is painful. Have to remain still. About a minute of slow transfusion. He pushes the plunger thing too fast - it stings. I am told that my all my veins are now sensitive due to prior treatment - which means the next few months is going to be horribly painful. Needles and Leukeamia go hand in hand. Radioactive liquid mingles round my blood stream, but I don't glow or sparkle or fizz. Thats a bit of a let down. All this, for not much. I am led into scanning room and lay down on the scan bed. Electrodes are stuck all over my torso and a big camera contraption placed near my heart. I can hear my heart thumping, so it better show up good on the screen. There is a long silence. The scan nurse goes out and returns with two more. Mumbled discussion from behind the back of my head. What! Seems an age before they come over and talk to me. I am thinking: has previous chemo damaged my heart? Is it pumping correctly? Got to have a heart that is in full working order - strong enough to take the Flagida (apparently, the most toxic chemo they have...nice). Ahh, saved by technology. My heart working good, it's the computer that is causing problems and not saving images. Computer is re-booted and I am re-scanned.
I am out and walking along the south-bank by midday. The place is full of pre-olympic madness. Cameras, ice-creams and wild wurlitzer music. I note particularly a young ballerina in a tutu pirouetting and jumping and flexing (not good on ballet terms). Seems incongruous somehow, her, amongst the clowns, the painted giants and boom boxes. Hot and blue sky, finally. Just in time for the grand parade on Friday. I cross over Hungerford Bridge - Thames is low tide, chocolate brown. My eye catches the Shard and sitting in its shadow lies Guys Hosptial. Not the most welcome sight. I puff some more and head up to Covent Garden and buy myself an iPhone (better not get stolen this time). 3G, 8gb. Note to all those of you who know my tendency for techno-kit - this is the most basic it gets for an iPhone. I am being very abstemious. I am keeping my £12 sim only contract. Not falling for the bells and whistles of a 24 month tie in! I have lunch with Joe. We sit in the shadow of covent garden church, eating M&S sandwiches. We talk bone marrow treatment and watch some bare-chested-unicycle-chainsaw-wielding performer doing his thing over the cobbles of the piazza. This is incongruous too. There is a big crowd. Its noisy and hot.
Home by 3 and lay, shattered, on my sofa and look at my July garden (note it needs watering for the first time in weeks) and the cut-out shape of blue sky behind the trees on Grassmount. There is a tiredness starting to creep over me, which just feels enormous. And my legs ache deep down. I hope it is all just psycosamatick (no spell check for this spelling - I beat the computer!). Puff again. I know its not. This is mutant genes doing their thing. The reality of next week focuses in just a little bit sharper. Lilly, just being Lilly, comes over and sits by my side. Cleans her whiskers with her soft apricot paws. Wonderfully oblivious and demanding food. But her little legs too, are bent and fragile, full of arthritis. Sometimes she walks all wobbly across the floor. Her kidneys are starting to pack up and cat dementia is creeping in. Me and her. Blimey - what a pair!
Luigi arrives on Thursday. My 5 star camping man. My diamond and my rock. My heart thrills and I put out all the bunting in my head. Yards of it.
I am out and walking along the south-bank by midday. The place is full of pre-olympic madness. Cameras, ice-creams and wild wurlitzer music. I note particularly a young ballerina in a tutu pirouetting and jumping and flexing (not good on ballet terms). Seems incongruous somehow, her, amongst the clowns, the painted giants and boom boxes. Hot and blue sky, finally. Just in time for the grand parade on Friday. I cross over Hungerford Bridge - Thames is low tide, chocolate brown. My eye catches the Shard and sitting in its shadow lies Guys Hosptial. Not the most welcome sight. I puff some more and head up to Covent Garden and buy myself an iPhone (better not get stolen this time). 3G, 8gb. Note to all those of you who know my tendency for techno-kit - this is the most basic it gets for an iPhone. I am being very abstemious. I am keeping my £12 sim only contract. Not falling for the bells and whistles of a 24 month tie in! I have lunch with Joe. We sit in the shadow of covent garden church, eating M&S sandwiches. We talk bone marrow treatment and watch some bare-chested-unicycle-chainsaw-wielding performer doing his thing over the cobbles of the piazza. This is incongruous too. There is a big crowd. Its noisy and hot.
Home by 3 and lay, shattered, on my sofa and look at my July garden (note it needs watering for the first time in weeks) and the cut-out shape of blue sky behind the trees on Grassmount. There is a tiredness starting to creep over me, which just feels enormous. And my legs ache deep down. I hope it is all just psycosamatick (no spell check for this spelling - I beat the computer!). Puff again. I know its not. This is mutant genes doing their thing. The reality of next week focuses in just a little bit sharper. Lilly, just being Lilly, comes over and sits by my side. Cleans her whiskers with her soft apricot paws. Wonderfully oblivious and demanding food. But her little legs too, are bent and fragile, full of arthritis. Sometimes she walks all wobbly across the floor. Her kidneys are starting to pack up and cat dementia is creeping in. Me and her. Blimey - what a pair!
Luigi arrives on Thursday. My 5 star camping man. My diamond and my rock. My heart thrills and I put out all the bunting in my head. Yards of it.
Friday, 20 July 2012
TREATMENT UPDATE
Hallo all,
Yesterday another visit to Haematology Day Unit, Floor 4, Southwark Wing, Guys Hospital. I had held onto a small but beautifully shaped thought that maybe the haemo lab. made some mistake last week. But no. Blood counts still dropping and confirmation that treatment will start on July 30th. So 10 days or so to chill (!) get myself organised and potter twixt garden and studio. And hopefully share a mug of tea or two with some of you. Monday 23rd I am having a MUGA scan - injection of radiation (mmm, nice) and then lots of wires stuck all over me to monitor my heart - to check it is strong enough to cope with ensuing onslaught. It better be. And some. Think my chemo regime will be something called FLAGIDA (for those medical people out there) - which is a combination of chemos including the foul cytarabin that I had to cope with last time (had a bad reaction - but they insist I will be monitored closely). Horrible bag of short term and long term side-effects. Hey ho. 5 days of chemo and if my body handles it, I will be allowed home after a week or so to recover. If I get sick, wam bam, straight back into hospital. How familiar all this sounds... Second round of chemo will take place early September. As above. Then, providing I am in remission I move on over to Kings and the bone marrow transplant mid to later October. More of which later. One day at a time (sweet jesus!). Needless to say, I feel wide eyed, stunned and almost speechless (almost, note!) with this new lot of information to absorb. I find myself wandering around the house doing a lot of loud puffing - and quite a bit of swearing. Short relief. Lilly keeping a low profile.
On a brighter note, I have just had notification that I have had work accepted for both BITE and RE-Open (london based printmaking exhibitions, one at Mall Galleries and one at The Bankside Gallery). Very pleased about this. A good result amongst all this mayhem. Forest Hill is steely grey - while I have had a report of hot x hot in Venice this morning. Thanks everyone for blog comments and emails. Great to hear from you. Catch you all later. tch
Yesterday another visit to Haematology Day Unit, Floor 4, Southwark Wing, Guys Hospital. I had held onto a small but beautifully shaped thought that maybe the haemo lab. made some mistake last week. But no. Blood counts still dropping and confirmation that treatment will start on July 30th. So 10 days or so to chill (!) get myself organised and potter twixt garden and studio. And hopefully share a mug of tea or two with some of you. Monday 23rd I am having a MUGA scan - injection of radiation (mmm, nice) and then lots of wires stuck all over me to monitor my heart - to check it is strong enough to cope with ensuing onslaught. It better be. And some. Think my chemo regime will be something called FLAGIDA (for those medical people out there) - which is a combination of chemos including the foul cytarabin that I had to cope with last time (had a bad reaction - but they insist I will be monitored closely). Horrible bag of short term and long term side-effects. Hey ho. 5 days of chemo and if my body handles it, I will be allowed home after a week or so to recover. If I get sick, wam bam, straight back into hospital. How familiar all this sounds... Second round of chemo will take place early September. As above. Then, providing I am in remission I move on over to Kings and the bone marrow transplant mid to later October. More of which later. One day at a time (sweet jesus!). Needless to say, I feel wide eyed, stunned and almost speechless (almost, note!) with this new lot of information to absorb. I find myself wandering around the house doing a lot of loud puffing - and quite a bit of swearing. Short relief. Lilly keeping a low profile.
On a brighter note, I have just had notification that I have had work accepted for both BITE and RE-Open (london based printmaking exhibitions, one at Mall Galleries and one at The Bankside Gallery). Very pleased about this. A good result amongst all this mayhem. Forest Hill is steely grey - while I have had a report of hot x hot in Venice this morning. Thanks everyone for blog comments and emails. Great to hear from you. Catch you all later. tch
Thursday, 19 July 2012
GLAD ALL OVER
Ciao Tutti!
Venezia: bright blue and brilliant. A perfect five days, wrapped up in sunshine and Luigi. We were quietly domestic - slipping through the heat to the local co-op and filling our basket full of favourite things: cherries, peaches and hunks of sweet water melon. Fat plum tomatoes and mint green fennel. Mozzarella and mortadella. Fish from the tiny local stall. New apartment is just one minute from Giudecca waterfront, at the top of a small campo. You can lie in bed and hear the boats busying across the canal. Redentore fireworks were spectacular - a full half hour - enormous explosion cracking through the night sky and echoing around st marco basin. The Regatta took place late on sunday afternoon. Its all a mad splash of colour and chaos - and boy, are those gondoliers fit! I loaded up my camera with a lot of memories and used my iPad to record sounds. Isolation room and ward are so sealed off that its not possible even to hear a plane flying over or the screech of a police car - but now I have a great selection of noises to tune into: hot cicadas, rumbling vaporettas, paino practice drifting from an unknown window - even Luigi snoring. Hell, it'll be home from home!
So we cried a bit but laughed much more. We talked about our new home on Giudecca - when all this nightmare is past by - with a studio and a boat (which I will drive...better navigational skills!). We walked a lot - morning, noon and night. Stars and stuff. Rode the green waters of giudecca canal on No 2 vaporetto - salt air on my face and in my lungs. Spritz and Prosecco. Luigi warm, tender and solid as a rock. Feeling well all over, so hard to believe there are mutant genes gathering... Big time glad I went out. Just the best thing to do. Most of the time I was switched off from all that is about to happen. One thing I have learnt from the first time round, is how to appreciate the moment, the very here and now of life. Where your feet are stood, the spot you breath from. This is it. So precious - not to be wasted by filling the "now" with the "then". Enough with the philosophy.
Today I have another meeting with consultants. Another blood test. Maybe will know more about when everything starts. Back soon. tch
Venezia: bright blue and brilliant. A perfect five days, wrapped up in sunshine and Luigi. We were quietly domestic - slipping through the heat to the local co-op and filling our basket full of favourite things: cherries, peaches and hunks of sweet water melon. Fat plum tomatoes and mint green fennel. Mozzarella and mortadella. Fish from the tiny local stall. New apartment is just one minute from Giudecca waterfront, at the top of a small campo. You can lie in bed and hear the boats busying across the canal. Redentore fireworks were spectacular - a full half hour - enormous explosion cracking through the night sky and echoing around st marco basin. The Regatta took place late on sunday afternoon. Its all a mad splash of colour and chaos - and boy, are those gondoliers fit! I loaded up my camera with a lot of memories and used my iPad to record sounds. Isolation room and ward are so sealed off that its not possible even to hear a plane flying over or the screech of a police car - but now I have a great selection of noises to tune into: hot cicadas, rumbling vaporettas, paino practice drifting from an unknown window - even Luigi snoring. Hell, it'll be home from home!
So we cried a bit but laughed much more. We talked about our new home on Giudecca - when all this nightmare is past by - with a studio and a boat (which I will drive...better navigational skills!). We walked a lot - morning, noon and night. Stars and stuff. Rode the green waters of giudecca canal on No 2 vaporetto - salt air on my face and in my lungs. Spritz and Prosecco. Luigi warm, tender and solid as a rock. Feeling well all over, so hard to believe there are mutant genes gathering... Big time glad I went out. Just the best thing to do. Most of the time I was switched off from all that is about to happen. One thing I have learnt from the first time round, is how to appreciate the moment, the very here and now of life. Where your feet are stood, the spot you breath from. This is it. So precious - not to be wasted by filling the "now" with the "then". Enough with the philosophy.
Today I have another meeting with consultants. Another blood test. Maybe will know more about when everything starts. Back soon. tch
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| VENEZIA, FROM FLIGHT EZY5268 |
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