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
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| Showing off my new hair. Soon it will all fall out - again! |
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| Showing off my Hickman Line. Put in today. Ouch! |
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| Hickman Line (detail) |
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