....that's what I discovered at 4am yesterday morning. Great big fat black thing, about an inch long with waving antenna. Ooo, how it scuttled. So fast. Me too. Managed to stay cool and not squeal. Rang for a nurse. Somebody came and did battle with it. I was standing on the bed by this time directing proceeding from on high. It shot about all over the place, but finally succumbed and was squashed up and swept away in bundles of paper towel... Pest control appeared first thing in the morning and put a box of bait/poison down next to the loo. However the seed is sown, and every time I open the bathroom door I am doing a scan for scuttling beasties. And joking aside, cockroaches are a health hazard which I could do without. I am surprised that they are here on such a 'high risk' ward. I guess the truth is the hospital is probably crawling with them. Where there one there's sure to be more than two...
Been a difficult few days. Was hoping to be home this evening. But my temperature is slowly creeping up. My blood counts are swiftly falling down (neutrophils still around 0.9) and I just feeling rough, sweaty and unwell. My eyes ache. Dr informs me tonight that the CMV marker in my blood has risen, so they are going to start me on the strong antiviral drug. Not what i wanted to hear. Oh dear. Least it's in tablet form and not IV. If it's IV I am stuck in the hospital till the course is finished. But with tablets I can get home. I will be monitored over the next few days and then they will make a decision depending on how I respond. Can't believe I have been back in hospital for almost a week. Grassmount seems an age away. Robins. Wood mouse. Jays an' all. Luigi tells me there a purple crocus in Ruskin Park. And last night there were great rains and wild winds apparently. Shut away in my isolation chamber i miss out on all this. But my slice of hexagon sky was filled with a smudgy white moon slipping in and out of sweeping midnight clouds. That was a precious sight.
Signing off for now. Waiting for my antiviral drugs to arrive. Lying on my Air Force blue duvet dressed in stardust blue pajamas. Lots of blue. My hair by the way (incase anyone is wondering), is doing a very good interpretation of a skunk (sight, not smell). Growing back slowly in patches of dark grey and white. Goddam it, white!
Hope everyone well. Hope everyone happy. Big world hug. Back soon. tch xx
Tuesday, 29 January 2013
Sunday, 27 January 2013
STUCK INSIDE
Dear All,
Apologies for taking a long time to update blog. Have been too wiped out to manage tip tapping on my ipad, balanced on my belly at a 50 degree angle in bed...
Current update: have been back in hospital since the eve of January 23rd. I was hoping it was just going to be a 36 hour visit but they took a load of blood cultures, which unfortunately showed some positive results. So I was slapped on to heavy duty IV antibiotics and sent up to Davidson Ward into an isolation room. It was a relief to get out of the Open Ward. Too much coughing and spluttering going on. Sharing a loo and shower between 4 of us. Not good. Especially as one elderly woman had trouble with coordination...
Earliest release date will be Tuesday, if all is well and there is no further sign of infection. However one of the blood cultures was showing a raised marker for CMV. This is a virus that most of us have, but due to my transplant I am not able to fight it. If the marker goes higher they will have to put me on very strong antibiotics. These have nasty side effects. They can also damage the cords. And my cords are still very fragile and immature. So it's a big balancing act. If I start to think it all through and the consequences of not doing or doing something, it all gets a bit scary. I am willing my body to stay well and have the wear withal to fight off infections on its own. Only time will tell. My blood counts are bouncing around like a rubber ball at the moment. Yesterday my neutrophils where 1.01 and my WBC 1.66. So back to being neutropenic again. My haemoglobin has fallen, so maybe due a blood transfusion. Only my platelets are holding their own and slowly improving. Good for my platelets! Something working.
Davidson Ward is very different to The Deryk Mitchell Unit (where I had my transplant) even though they are next door to each other. I miss the DMU (not sure 'miss' is the appropriate term to use). The staff were very friendly. This is a bigger ward = less time. But the auxiliary team is the same, so I do see some familiar faces. One bonus is that I have a small hexagon shape of sky to look at (and grey portacabin type walls). The hexagon sky is covered in netting to stop pigeons from flying down and crapping all over the place. Yesterday the sky was blue and I could see planes flying across. A crow too. Today seems bright with scudding white clouds. The planes are heading to Heathrow. I wish I was heading to Heathrow.
Luigi has returned to his role of "bearer of broth" at midday. He has also filled my mini fridge with mini pork pies, mini babybel, yogurt and apples. Though my appetite is not good at the moment. Still a daily struggle with nausea due to the mountains of medications I have to swallow. Seems my GVHD rash has all but disappeared. So that's some good news.
I hope by midweek I will be back at Grassmount and updating this blog from my iMac. If you are reading this please send a positive thought/ prayer/whatever. This is just the start of the long slow road to recovery so still need your support big time. It will be a minimum of a year before everything is back to normal - maybe even two. But for me, right now, it's one day at a time. The next big milestone I am aiming for is Day 100 (100 days after transplant). Not sure why, but this is a significant date referred to in all the stem cell transplant literature. Today is day 47, so only 53 to go....
Greetings round the world: friends, family and 'almost strangers'. Great to hear from so many people. Hope the snows and rain of the northern hemisphere and the raging fires and floods down under have not taken their toll too hard. Love and high fives. February waiting in the wings... Back soon. tch xx
Apologies for taking a long time to update blog. Have been too wiped out to manage tip tapping on my ipad, balanced on my belly at a 50 degree angle in bed...
Current update: have been back in hospital since the eve of January 23rd. I was hoping it was just going to be a 36 hour visit but they took a load of blood cultures, which unfortunately showed some positive results. So I was slapped on to heavy duty IV antibiotics and sent up to Davidson Ward into an isolation room. It was a relief to get out of the Open Ward. Too much coughing and spluttering going on. Sharing a loo and shower between 4 of us. Not good. Especially as one elderly woman had trouble with coordination...
Earliest release date will be Tuesday, if all is well and there is no further sign of infection. However one of the blood cultures was showing a raised marker for CMV. This is a virus that most of us have, but due to my transplant I am not able to fight it. If the marker goes higher they will have to put me on very strong antibiotics. These have nasty side effects. They can also damage the cords. And my cords are still very fragile and immature. So it's a big balancing act. If I start to think it all through and the consequences of not doing or doing something, it all gets a bit scary. I am willing my body to stay well and have the wear withal to fight off infections on its own. Only time will tell. My blood counts are bouncing around like a rubber ball at the moment. Yesterday my neutrophils where 1.01 and my WBC 1.66. So back to being neutropenic again. My haemoglobin has fallen, so maybe due a blood transfusion. Only my platelets are holding their own and slowly improving. Good for my platelets! Something working.
Davidson Ward is very different to The Deryk Mitchell Unit (where I had my transplant) even though they are next door to each other. I miss the DMU (not sure 'miss' is the appropriate term to use). The staff were very friendly. This is a bigger ward = less time. But the auxiliary team is the same, so I do see some familiar faces. One bonus is that I have a small hexagon shape of sky to look at (and grey portacabin type walls). The hexagon sky is covered in netting to stop pigeons from flying down and crapping all over the place. Yesterday the sky was blue and I could see planes flying across. A crow too. Today seems bright with scudding white clouds. The planes are heading to Heathrow. I wish I was heading to Heathrow.
Luigi has returned to his role of "bearer of broth" at midday. He has also filled my mini fridge with mini pork pies, mini babybel, yogurt and apples. Though my appetite is not good at the moment. Still a daily struggle with nausea due to the mountains of medications I have to swallow. Seems my GVHD rash has all but disappeared. So that's some good news.
I hope by midweek I will be back at Grassmount and updating this blog from my iMac. If you are reading this please send a positive thought/ prayer/whatever. This is just the start of the long slow road to recovery so still need your support big time. It will be a minimum of a year before everything is back to normal - maybe even two. But for me, right now, it's one day at a time. The next big milestone I am aiming for is Day 100 (100 days after transplant). Not sure why, but this is a significant date referred to in all the stem cell transplant literature. Today is day 47, so only 53 to go....
Greetings round the world: friends, family and 'almost strangers'. Great to hear from so many people. Hope the snows and rain of the northern hemisphere and the raging fires and floods down under have not taken their toll too hard. Love and high fives. February waiting in the wings... Back soon. tch xx
Wednesday, 23 January 2013
23.1.58
TOday my birthday. This evening readmitted to hosptial with temperature. Got skin GVHD - rash over 70% of my body. feeling a bit lousy. No bed available so having to go to an "Open Ward" hope I dont pick up germs. Last few days been tricky, and I have been tired hence no blog. Will catch up soon
thanks for birthday cards and texts. lovely to hear from everyone. back soon tch xx (aged 55)
thanks for birthday cards and texts. lovely to hear from everyone. back soon tch xx (aged 55)
Thursday, 17 January 2013
UP UP AND AWAY
Another quick update...neutrophil counts gone back up today, now reading at 3.45 and whites at 4.65, haemoglobin and platelets holding steady. Phwee. What a relief. I am one happy person tonight! I guess this may be the pattern for a little while yet, up and down (and round and round). I shift from being anxious to philosophical. So many see-saws to balance - emotional and physical. Marjory Daw never had such a time as this I am sure - and as for Johnny, he'd be a rich man by now as he's working over-time...
My nebuliser was disgusting. Horrible stuff that tasted foul. I have to have it once a month for the next six months. I am put into a small room and shut inside with a "giving-machine" strapped to my mouth. It bubbles and smokes as I breath in and hold for 2 seconds before breathing out. This process lasts for half and hour. A bitter taste that sinks down into my throat. I long to pull it out of my mouth and breath properly. Instead I just imagine I am enjoying an opium-pipe. I did many many years ago while I was trekking in the hills of Thai Burmese border. I stayed with a family of Karen tribes people for a couple of nights. One of the village elders gave me a pipe to smoke. I remember writing in my diary, "tonight I touched the moon"... Well, this afternoon I was no-where near the moon. Feet unfortunately firmly planted on the blue linoleum floor. The stuff is so toxic that even the nurses are not allowed into the room while I am inhaling it. When it is over, I come out with a mask strapped to my face so that I don't breath over the other patients in the HOP clinic. My chest is tight and I am inhaling fast. I have to have two sets of obs. before they will let me go. Luigi and I finally get a taxi and home in time for tea (crumpets). 4 hours of clinic. Not so bad today. Normally its a five or six hour stint.
Now I am waiting for snow. I love waiting for snow. I love even more watching big fat flakes spin out of the steel grey sky and silently carpet everywhere in white. Always fills me with a sense of child-like wonder. My sister Jackie sent me a bird feeder for my birthday. Perfect timing. Tomorrow we will fit it up and fill it with delicious nuts and fat-balls. I will have to write a sign: Squirrels Keep Off.
Keep warm everyone. No slipping on ice. Back soon. tch x
My nebuliser was disgusting. Horrible stuff that tasted foul. I have to have it once a month for the next six months. I am put into a small room and shut inside with a "giving-machine" strapped to my mouth. It bubbles and smokes as I breath in and hold for 2 seconds before breathing out. This process lasts for half and hour. A bitter taste that sinks down into my throat. I long to pull it out of my mouth and breath properly. Instead I just imagine I am enjoying an opium-pipe. I did many many years ago while I was trekking in the hills of Thai Burmese border. I stayed with a family of Karen tribes people for a couple of nights. One of the village elders gave me a pipe to smoke. I remember writing in my diary, "tonight I touched the moon"... Well, this afternoon I was no-where near the moon. Feet unfortunately firmly planted on the blue linoleum floor. The stuff is so toxic that even the nurses are not allowed into the room while I am inhaling it. When it is over, I come out with a mask strapped to my face so that I don't breath over the other patients in the HOP clinic. My chest is tight and I am inhaling fast. I have to have two sets of obs. before they will let me go. Luigi and I finally get a taxi and home in time for tea (crumpets). 4 hours of clinic. Not so bad today. Normally its a five or six hour stint.
Now I am waiting for snow. I love waiting for snow. I love even more watching big fat flakes spin out of the steel grey sky and silently carpet everywhere in white. Always fills me with a sense of child-like wonder. My sister Jackie sent me a bird feeder for my birthday. Perfect timing. Tomorrow we will fit it up and fill it with delicious nuts and fat-balls. I will have to write a sign: Squirrels Keep Off.
Keep warm everyone. No slipping on ice. Back soon. tch x
Wednesday, 16 January 2013
NOSE DIVING
Dear All,
very quick update as I am shattered. Disappointing blood results yesterday. My white cells and neutrophils have gone through the floor - from 4.66 and 3.86 respectively (on Saturday) to 1.66 and 0.91 yesterday (Tuesday). Haemoglobin and platelets seem to be holding their own though. I was expecting a fall, as I have not been having G-CSF injections for three days, but was a bit thrown (ha!) by the such a huge drop. I had another G-CSF injection yesterday - so we will see tomorrow, when I go back to HOP, if things have stabilised. I do hope so. I get very panicky when my neutrophil count drops. I need those babies to be self sufficient.
Will also be strapped to a nebulizer machine tomorrow for half an hour. Stem cell transplant patients are at risk of some nasty lung infection called PCP so in order to minimise the risk I will have to have monthly nebulizer sessions. Tastes horrid apparently. Oh dear.
I still struggling with my daily intact of tablets and medications. Some days worse than others. Today bad. I have had to order a weekly pill box to keep account of all the stuff I have to be taking. Its easy to get confused - forget or double-up. I have been in bed most of the day resting up from an exhausting day at the HOP yesterday - lots of slow walking up and down miles of hospital corridor. 10 vials of blood, weight, height, urine. Low on magnesium - so more tablets to take. Like chewing chalky dusty cardboard. Almost the straw that breaks the camels back. I have to break them up in order to get them down. 2 become 8.
Fingers crossed that tomorrow counts have climbed back up a bit. One day at a time.
back soon. tch xx
very quick update as I am shattered. Disappointing blood results yesterday. My white cells and neutrophils have gone through the floor - from 4.66 and 3.86 respectively (on Saturday) to 1.66 and 0.91 yesterday (Tuesday). Haemoglobin and platelets seem to be holding their own though. I was expecting a fall, as I have not been having G-CSF injections for three days, but was a bit thrown (ha!) by the such a huge drop. I had another G-CSF injection yesterday - so we will see tomorrow, when I go back to HOP, if things have stabilised. I do hope so. I get very panicky when my neutrophil count drops. I need those babies to be self sufficient.
Will also be strapped to a nebulizer machine tomorrow for half an hour. Stem cell transplant patients are at risk of some nasty lung infection called PCP so in order to minimise the risk I will have to have monthly nebulizer sessions. Tastes horrid apparently. Oh dear.
I still struggling with my daily intact of tablets and medications. Some days worse than others. Today bad. I have had to order a weekly pill box to keep account of all the stuff I have to be taking. Its easy to get confused - forget or double-up. I have been in bed most of the day resting up from an exhausting day at the HOP yesterday - lots of slow walking up and down miles of hospital corridor. 10 vials of blood, weight, height, urine. Low on magnesium - so more tablets to take. Like chewing chalky dusty cardboard. Almost the straw that breaks the camels back. I have to break them up in order to get them down. 2 become 8.
Fingers crossed that tomorrow counts have climbed back up a bit. One day at a time.
back soon. tch xx
Monday, 14 January 2013
CREATURE COMFORTS
Dear All,
Blimey! What joy it is to be sat here in front of my big 21 inch screen iMac. So easy to read and type - no balancing my iPad on my knees! Got home late on Saturday afternoon. Lulu and Julian doing me the honours of collecting me outside the front door of Kings. It is icy cold. I am wrapped up to the nines but lovely to feel the elements on my face. Dark with spitting rain and stars as we speed our way back to Forest Hill. I see warm lit houses, spikey winter trees, kids on bikes, headlights, dog cocking a leg at the curb side. All life again. I sink back and breath slow and deep.
I am feeling ancient. I have to go up the stairs one at a time. Huff and puff. Very slow and full of tremors and internal shakes. My ears ring, tinitus whining. Aching limbs. These are all results of the aggressive medications I am on (5 times a day total of 18 tablets) I have to get used to this. These include my anti-rejection drugs. I need them big time. But side effects are what I have to stomach for a good few months, until the dose can be reduced without any danger to me. My nausea though is better managed at home. Access to food, little and often. Yesterday it was scrambled egg on toast at 9am. This morning it was bacon and tomatoes on toast, served in bed (cooked by you know who) with a mug of tea. Spoilt.
I woke at 6am today and in the blue grey underbelly of this winter morning I heard the thin soft sound of bird song. So different to the summer chatter that is busy and bossy and "my song is bigger than yours". It was shy, tentative - almost like a secret. I see outside a light scattering of snow. I wrap my duvet tight round me. I realise how lucky I am to be over the first two hurdles and out of that wretched hospital room.
I have spent the last two days in slow motion. Kitchen. Post. Sofa. TV. Bathroom. Computer. Sofa. Computer. Sofa. Kitchen. Sofa. TV. Bed. It all requires up and down stairs. Ridiculously, I am shattered after a day of such expended energy! Luigi shops, cooks and washes and provides me with a continuous supply of hot water bottles and sliced carrots and mini babybel cheese. He also puts out endless handfuls of bird seed - the robin visits frequently throughout the day. So too a handsome pair of jays, two squirrels, a thrush, a blackbird and as of yesterday a small wood mouse, who is remarkably familiar and sits happily nibbling away. Definitely not camera shy! Mmmm, seems while the cat's away the mice really do play! Lilly is no doubt turning in her grave. All that dinner!
Tomorrow I have my first HOP clinic (Haematology Outpatients). I am nervous. I have been without a daily blood test for 3 days. Have my counts fallen - or rather are they holding without the GCSF? All will be revealed in the morning. Tense. More waiting. More wondering. Best not to wonder. That is an important lesson I have learnt. Take each day as it comes. Pointless to do anything other.
Exhausted now after writing this, with supper in between. I am off to watch Miranda and have a laugh. High fives to everyone in both hemispheres. It is just the BEST being home. Back amongst all the flotsam and jetsam that makes up my life, my house, me. Catch you all soon. tch xx
robin
wood mouse
winter view from my bedroom window
Blimey! What joy it is to be sat here in front of my big 21 inch screen iMac. So easy to read and type - no balancing my iPad on my knees! Got home late on Saturday afternoon. Lulu and Julian doing me the honours of collecting me outside the front door of Kings. It is icy cold. I am wrapped up to the nines but lovely to feel the elements on my face. Dark with spitting rain and stars as we speed our way back to Forest Hill. I see warm lit houses, spikey winter trees, kids on bikes, headlights, dog cocking a leg at the curb side. All life again. I sink back and breath slow and deep.
I am feeling ancient. I have to go up the stairs one at a time. Huff and puff. Very slow and full of tremors and internal shakes. My ears ring, tinitus whining. Aching limbs. These are all results of the aggressive medications I am on (5 times a day total of 18 tablets) I have to get used to this. These include my anti-rejection drugs. I need them big time. But side effects are what I have to stomach for a good few months, until the dose can be reduced without any danger to me. My nausea though is better managed at home. Access to food, little and often. Yesterday it was scrambled egg on toast at 9am. This morning it was bacon and tomatoes on toast, served in bed (cooked by you know who) with a mug of tea. Spoilt.
I woke at 6am today and in the blue grey underbelly of this winter morning I heard the thin soft sound of bird song. So different to the summer chatter that is busy and bossy and "my song is bigger than yours". It was shy, tentative - almost like a secret. I see outside a light scattering of snow. I wrap my duvet tight round me. I realise how lucky I am to be over the first two hurdles and out of that wretched hospital room.
I have spent the last two days in slow motion. Kitchen. Post. Sofa. TV. Bathroom. Computer. Sofa. Computer. Sofa. Kitchen. Sofa. TV. Bed. It all requires up and down stairs. Ridiculously, I am shattered after a day of such expended energy! Luigi shops, cooks and washes and provides me with a continuous supply of hot water bottles and sliced carrots and mini babybel cheese. He also puts out endless handfuls of bird seed - the robin visits frequently throughout the day. So too a handsome pair of jays, two squirrels, a thrush, a blackbird and as of yesterday a small wood mouse, who is remarkably familiar and sits happily nibbling away. Definitely not camera shy! Mmmm, seems while the cat's away the mice really do play! Lilly is no doubt turning in her grave. All that dinner!
Tomorrow I have my first HOP clinic (Haematology Outpatients). I am nervous. I have been without a daily blood test for 3 days. Have my counts fallen - or rather are they holding without the GCSF? All will be revealed in the morning. Tense. More waiting. More wondering. Best not to wonder. That is an important lesson I have learnt. Take each day as it comes. Pointless to do anything other.
Exhausted now after writing this, with supper in between. I am off to watch Miranda and have a laugh. High fives to everyone in both hemispheres. It is just the BEST being home. Back amongst all the flotsam and jetsam that makes up my life, my house, me. Catch you all soon. tch xx
winter view from my bedroom window
Thursday, 10 January 2013
YO-YO RIDING
Hallo All, sorry for the silence. Been struggling still with nausea and the pills I am on to try to combat it send me to sleep for half the day. Three days ago my counts dropped a wee bit, but then stepped up to the mark the following day with a neutrophil reading of 1.36. So I was firing up ready to explode. Yesterday I was visited by the new young Registrar who gave me the much awaited feedback on my bone marrow report. She tells me that there is no sign of disease, which of course is a good thing. I don't want the leukaemia to return before I have had a chance to build a new fighting fit immune system. However she seems unclear as to what the rest of the report was saying. This is a bad moment. She mutters something about an empty bone marrow, ie no signs of regrowth. She says the consultants are meeting tomorrow and one of them will see me on the ward round in the afternoon to explain to me more fully the results of the report...She leaves the room. My head goes into overdrive: will this will mean another bone marrow test, maybe the babies have given up the ghost, am i sailing up the creek without a paddle? I sink, rather pathetically and too quickly for my own liking. I realize how fragile I am psychologically. How so easy it is for me to crumple. The afternoon drags on. One of my favorite nurses is on night duty and gives me a gentle pep talk. I manage to stop the downward spiral. The report is giving an account of bone activity that was taken a week ago. Even if it wasn't showing anything positive then, the chance is, that with a further bone marrow test, it will show something is working now. At least that is what I think. I fall asleep exhausted after watching 'Africa' the new David Attenborough documentary. Lions and lizards, mountain gorillas and dusty elephants. I wish I could be wandering across the savannah of East Africa....
Damn! This has been a very hard 24 hours. I spend the morning trying not to throw up, and manage successfully (just). Luigi's soup settles my stomach. I sleep half the afternoon. The consultant appears at 4pm. He spends a lot of time talking about my nausea, goes through the long list of tablets I am on and stops a couple of them. Unable to contain myself I ask about the bone marrow report. "Oh, that's good. All fine. Your counts are going up and the marrow is showing signs of regeneration" I am gobsmacked! I get him to repeat what he has just said. And I hear it all over again. Never have words sounded so sweet. I find myself wiping away a couple of tears. There is no need for a further bone marrow test just yet (though I will have to have them monthly for a while). The prof goes on by saying that I should be able to go home on Saturday if all stays well. I am like a firework about to explode in bed. I beam from ear to ear. It has been such unexpected news. I will have to learn to self inject. Daily GCSF doses to keep my neutrophils boosted until they reach a total of 2.5. Today they are 1.6, which means that I can start to eat all the things I want as soon as I am home. I crave fresh crunchy lettuce, tomatoes, fennel, chicory. A big salad is for the making...
Bizarrely, as if by some strange unspoken sibling magic, both Richard and Adrian turn up within half an hour of the ward round. I feel like a kid with a shiny new Christmas present. Thrilled at telling them. As Luigi says, in his best english, "really good news". We celebrate with cold kit-kats and M&S ham sandwiches (mmm, the makings of a Famous Five picnic - but no lashings of ginger beer). As I tip tap this out now, I close my eyes and know that I will soon be feasting my eyes on sky and clouds and planes and trees. My garden. All sodden and wintery. The robin that hops by daily at breakfast for her feed. My ears will be full of the sounds of everyday: the creak of my bedroom window opening, the sound of the kettle filling, the spinning of the washing machine. It's amazing how these simple noises give shape to our domestic lives. Yet who ever bothers to think on such things? Until they are gone.
Dear friends, family and total strangers (of whom I know there are some that read this blog) - This particular update has been a long time coming. Thanks to you all for your support, interest, encouragement, prayers, positive vibes, candling lighting, carol singing (thanks specially Sims and Cuming families!) texts, mails, smoke signals etc. I have no doubt that without the backing of you all, in so many different ways, I would not be at this stage. Emotionally for me it really has made a difference knowing that you are all out there gunning for me. As the consultant said this afternoon, "it's still early days". I know there is a lot of road left to travel. But so far, so very good. Me and the babies walking hand in hand. Regeneration. The New Generation. Back very soon. tch xxx
Damn! This has been a very hard 24 hours. I spend the morning trying not to throw up, and manage successfully (just). Luigi's soup settles my stomach. I sleep half the afternoon. The consultant appears at 4pm. He spends a lot of time talking about my nausea, goes through the long list of tablets I am on and stops a couple of them. Unable to contain myself I ask about the bone marrow report. "Oh, that's good. All fine. Your counts are going up and the marrow is showing signs of regeneration" I am gobsmacked! I get him to repeat what he has just said. And I hear it all over again. Never have words sounded so sweet. I find myself wiping away a couple of tears. There is no need for a further bone marrow test just yet (though I will have to have them monthly for a while). The prof goes on by saying that I should be able to go home on Saturday if all stays well. I am like a firework about to explode in bed. I beam from ear to ear. It has been such unexpected news. I will have to learn to self inject. Daily GCSF doses to keep my neutrophils boosted until they reach a total of 2.5. Today they are 1.6, which means that I can start to eat all the things I want as soon as I am home. I crave fresh crunchy lettuce, tomatoes, fennel, chicory. A big salad is for the making...
Bizarrely, as if by some strange unspoken sibling magic, both Richard and Adrian turn up within half an hour of the ward round. I feel like a kid with a shiny new Christmas present. Thrilled at telling them. As Luigi says, in his best english, "really good news". We celebrate with cold kit-kats and M&S ham sandwiches (mmm, the makings of a Famous Five picnic - but no lashings of ginger beer). As I tip tap this out now, I close my eyes and know that I will soon be feasting my eyes on sky and clouds and planes and trees. My garden. All sodden and wintery. The robin that hops by daily at breakfast for her feed. My ears will be full of the sounds of everyday: the creak of my bedroom window opening, the sound of the kettle filling, the spinning of the washing machine. It's amazing how these simple noises give shape to our domestic lives. Yet who ever bothers to think on such things? Until they are gone.
Dear friends, family and total strangers (of whom I know there are some that read this blog) - This particular update has been a long time coming. Thanks to you all for your support, interest, encouragement, prayers, positive vibes, candling lighting, carol singing (thanks specially Sims and Cuming families!) texts, mails, smoke signals etc. I have no doubt that without the backing of you all, in so many different ways, I would not be at this stage. Emotionally for me it really has made a difference knowing that you are all out there gunning for me. As the consultant said this afternoon, "it's still early days". I know there is a lot of road left to travel. But so far, so very good. Me and the babies walking hand in hand. Regeneration. The New Generation. Back very soon. tch xxx
Sunday, 6 January 2013
CLIMBING LADDERS
Woo-hoo! Neutrophils climbed up to 0.97 today. White cell count up to 1.56. Fantastic! Don't want to count chickens etc, but things looking good. Hemoglobin and platelets dropping frequently, so having to have regular blood and platelet transfusions. Last night I had a reaction while having a platelet transfusion, which was very sudden and rather scary: stomach ache, fizzing lips, dizziness, red itchy body rash, hot burning skin and an inability to breath through my nose... It was sorted quickly with a shot of steroid and antihistamine. Hope not to repeat this experience.
Hit by big waves of fatigue. Even walking to the quarter deck to see the park is hard work. Some days I am not able to do it. A shower is enough. In fact a shower is exhausting! Still troubled by nausea in the morning. But still keeping a good appetite. Homemade soups everyday, filling me with vitamins and goodness. Luigi and I are playing lots of cards. Lulu and Julian came for a visit today. Oh yes, the outside world... Amanda came in two nights ago and gave me another reflexology sent from heaven. I fell asleep...
This week I will get the results of my bone marrow and third chimerism. This should give a clear idea of what is actually happening and confirm that grafting has started to take place. It is a difficult time to wait. Especially as my counts are going up. I am full of glee, but have to hold onto it for a bit longer yet. I don't want to jump ahead until everything is confirmed by the consultant. It really is still one day at a time (sweet Jesus).
Short and sweet tonight. Too tired. Hard work just tip-taping. Feels like I am stuck in glue.
Hope everyone well and happy and still keeping up with all those fine new year resolutions.
Big wave and hugs to all Australian cousins (wherever you are!) I hope the bush fires in Tasmania haven't caused too much damage - and everyone safe. A special hallo to everyone in Somerset. Between you all, there is quite a West Country posse. Snowy Cleveland, thinking of you too. Love to everyone everywhere. You are all part of my armor. Links in my chain. Thanks. Back soon tch x
Hit by big waves of fatigue. Even walking to the quarter deck to see the park is hard work. Some days I am not able to do it. A shower is enough. In fact a shower is exhausting! Still troubled by nausea in the morning. But still keeping a good appetite. Homemade soups everyday, filling me with vitamins and goodness. Luigi and I are playing lots of cards. Lulu and Julian came for a visit today. Oh yes, the outside world... Amanda came in two nights ago and gave me another reflexology sent from heaven. I fell asleep...
This week I will get the results of my bone marrow and third chimerism. This should give a clear idea of what is actually happening and confirm that grafting has started to take place. It is a difficult time to wait. Especially as my counts are going up. I am full of glee, but have to hold onto it for a bit longer yet. I don't want to jump ahead until everything is confirmed by the consultant. It really is still one day at a time (sweet Jesus).
Short and sweet tonight. Too tired. Hard work just tip-taping. Feels like I am stuck in glue.
Hope everyone well and happy and still keeping up with all those fine new year resolutions.
Big wave and hugs to all Australian cousins (wherever you are!) I hope the bush fires in Tasmania haven't caused too much damage - and everyone safe. A special hallo to everyone in Somerset. Between you all, there is quite a West Country posse. Snowy Cleveland, thinking of you too. Love to everyone everywhere. You are all part of my armor. Links in my chain. Thanks. Back soon tch x
Wednesday, 2 January 2013
MOVING ON UP
Already two days into 2013. My, how time flies! Been a tricky few days. My neutrophil counts continued to fall, yesterday the levelled out at 0.036 and today they have managed a tiny about- turn and moved up to 0.04. Which is minuscule, but gives me hope that things may be going in the right direction. Oh, I hope so. This faffing about at almost 0.0 is doing my head in. I am not sure which is the hardest, the psychological or the physical. It's an uncomfortable see-saw whichever.
Suffering still from nausea. Horrible. They try to control it with injections. They feel like wasps stings. Also have to have injections into my stomach everyday, something called GCSF, which promotes growth of neutrophils (not that it seems to be doing much promoting at the moment).
On 31st I was wheelchaired down to the endoscopy unit. Was dreading the whole event (it had been preceded by me throwing up all my morning tablets which I had had to take on an empty stomach. Fifteen of the buggers). Staff in the unit were very good. Capable hands. I had oxygen pipes clipped into my nose and a Hannibal Cannibal contraption fitted over my teeth and mouth to stop me from biting down on the tube they were going to insert. Then they sedated me and I don't remember much after that. Some gagging and gurgling. The process takes about 5 minutes. Camera down into my stomach, through to large and small intestine, taking biopsies along the way. Next thing I was in the recovery room and then being wheeled back to the ward (spotty hooded dressing gown and mask). Luigi was waiting for me with homemade soup, which went down a treat. One more horror over. And, as I suspected, initial reports seem to show everything is ok. No GVHD, which is what they were looking for.
Today I had a long bone marrow procedure. It's weird how some people can do it so much quicker than others. This was a young doctor, clearly taking a lot of trouble to try and give me minimum pain, but she just succeeded in drawing out the process, ultimately making me more stressed. It hurts like hell whatever!
I have returned to Bruce Willis lookalike. A five minute buzz with the ward clippers and all the dropping hair has gone. Which is a relief. Too much in my mouth!
Thanks for all the blog messages, texts, emails, etc. it has been great to hear from so many dear friends. Glad you are all still on this journey with me. Means a great deal. Thank you. Hope everyone one has recovered from seasonal revelries. Now time to strike out into 2013. Next stop, my birthday! Back soon. tch xx
Suffering still from nausea. Horrible. They try to control it with injections. They feel like wasps stings. Also have to have injections into my stomach everyday, something called GCSF, which promotes growth of neutrophils (not that it seems to be doing much promoting at the moment).
On 31st I was wheelchaired down to the endoscopy unit. Was dreading the whole event (it had been preceded by me throwing up all my morning tablets which I had had to take on an empty stomach. Fifteen of the buggers). Staff in the unit were very good. Capable hands. I had oxygen pipes clipped into my nose and a Hannibal Cannibal contraption fitted over my teeth and mouth to stop me from biting down on the tube they were going to insert. Then they sedated me and I don't remember much after that. Some gagging and gurgling. The process takes about 5 minutes. Camera down into my stomach, through to large and small intestine, taking biopsies along the way. Next thing I was in the recovery room and then being wheeled back to the ward (spotty hooded dressing gown and mask). Luigi was waiting for me with homemade soup, which went down a treat. One more horror over. And, as I suspected, initial reports seem to show everything is ok. No GVHD, which is what they were looking for.
Today I had a long bone marrow procedure. It's weird how some people can do it so much quicker than others. This was a young doctor, clearly taking a lot of trouble to try and give me minimum pain, but she just succeeded in drawing out the process, ultimately making me more stressed. It hurts like hell whatever!
I have returned to Bruce Willis lookalike. A five minute buzz with the ward clippers and all the dropping hair has gone. Which is a relief. Too much in my mouth!
Thanks for all the blog messages, texts, emails, etc. it has been great to hear from so many dear friends. Glad you are all still on this journey with me. Means a great deal. Thank you. Hope everyone one has recovered from seasonal revelries. Now time to strike out into 2013. Next stop, my birthday! Back soon. tch xx
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