Sorry no blog for a while. Have been having extremely difficult time. A mountain of things going wrong. I can't keep up with it all. The drug I had to control the CMV turned out to be foul and caused many problems. The main one being affecting my bladder. I have a catheter and violent bladder spasms. I need elektrolites daily. Hours worth of drips to replace stuff I am loosing. Today I have 'deranged' vit k levels, which means I am at risk of bleeding. Nightmare. The whole thing is a bloody nightmare. I need some core strength. I feel right now that i will never get out of here. Everyday there is something new to add to the list. I needs vibes and prayers and good wholesome things. Miss the outside. But often feel too bloody to not care that much. Back whenever I can get the energy. Bloggers all, salute... tch xx
Friday, 22 February 2013
Friday, 15 February 2013
UPDATE
Bone marrow seems ok. Pewee. I still not though. Lots going on and going wrong. Will write more soon. Thanks for lovely lot of supportive messages. Big help. In the middle of the minefield. . tch xx
Tuesday, 12 February 2013
STILL ON THE INSIDE
Dear all,
Very quick update as I am, feeling pretty wretched:
Counts all still very low- severely neutropenic now. Back on daily stomach injections to try and encourage counts to build up. Gives me a lot of pain in my back and hips. Feels like I am being squeezes by a python. Keeps me awake at night despite pain killers and hot water bottle.
Am on a new drug for the CMV. It makes me sick. Just been confirmed that I have to remain on it for two weeks. I am being fed anti sick drugs, but tired of seeing cardboard sick bowls!
Back on the deryk mitchell unit, which is where i started off in december. Room has no view. No slice of sky. Just dirty drain pipes and London brick.
Bone marrow result later on this week. Lots hangs on this. My counts are either dropping due to the antiviral drugs or because the bone marrow isn't working correctly. I am freaked out by this possibility. Need all thoughts, prayers etc etc
Back soon. Greetings and love to everyone world wide xxx tch
Very quick update as I am, feeling pretty wretched:
Counts all still very low- severely neutropenic now. Back on daily stomach injections to try and encourage counts to build up. Gives me a lot of pain in my back and hips. Feels like I am being squeezes by a python. Keeps me awake at night despite pain killers and hot water bottle.
Am on a new drug for the CMV. It makes me sick. Just been confirmed that I have to remain on it for two weeks. I am being fed anti sick drugs, but tired of seeing cardboard sick bowls!
Back on the deryk mitchell unit, which is where i started off in december. Room has no view. No slice of sky. Just dirty drain pipes and London brick.
Bone marrow result later on this week. Lots hangs on this. My counts are either dropping due to the antiviral drugs or because the bone marrow isn't working correctly. I am freaked out by this possibility. Need all thoughts, prayers etc etc
Back soon. Greetings and love to everyone world wide xxx tch
Thursday, 7 February 2013
RECALL
Dear All,
Sadly got a call from the hospital this morning telling me that my CMV markers have failed to respond to the antiviral tablets I have been on for the past week. My blood tests on Tuesday showed that the marker is still high, so I am having to be readmitted tomorrow (bed permitting) for a two week course of intravenous antiviral drugs. Oh Lordy! Another blank window to stare out of - unless of course I get a slice of sky. This, as you can imagine, is disappointing news. But I guess in the long run is the best course of action to take. Also the tablets have affected my blood counts and my neutrophils and WBC are both very low again. Medical team do not want this to happen. So all in all...
I am also suffering again from daily battle with nausea and it would be good to see if they can sort this as I am exhausted with feeling sick all the time and battling with a tender stomach. I know this is to do all the medication I am on (was put on more on Tuesday too, for a returning bladder infection). My current daily swallow is 17 tablets... way too many. Food and drink have become really hard work - there is nothing I feel like eating and my fluid intake is way too low. No temperatures though. 4pm and I have just managed twice round the roundabout (hanging onto Luigi's steady arm). Lovely soft pink candlyfloss sky.
Once back inside Kings I am going to try not to revert to 24 hours bed rest (a lazy habit of mine). The problem is that if I get up and dressed there is no-where to go apart from up and down a corridor with a mask tied round my face. I will have to think of something clever to do. I have been knitting bunting for my studio - which sounds bizarre - but has kept me occupied for the last couple of weeks. Click click clack. k1 p1 drop one, swear! Soon I will have yards/ metres of red triangles to string up.
The bone marrow was short swift and pretty damn painful. I did a lot of 'OOOOOwwwching' as they injected the bone and hissed blue air. But it was over quickly. Apart from a bruised hip I am not much worse for wear. Though where they are going to find bone to apple cork out soon is a mystery to me. I still have to have regular bone marrow biopsies for the next few years...
Final word is that a pair of nuthatches and a dunnock arrived on the bird feeder this afternoon. So pleased. Word is getting round. Also a long tailed tit is hanging around in the trees. Now we have a robins, jays, great tits, blue tits, nut hatches, dunnock and a pair of blackbirds. Plus the two squirrels (hand fed by Luigi) and the wood mouse. Quite a gathering. I will think of them all while tied to my drip.
Next stop Kings. Will update from a room-with-a-view. As always great to hear from so many people - and all those "unknowns" who have so kindly written, thank you. The world is a very good place! Greetings to everyone. North and South. Back soon tch xx
Sadly got a call from the hospital this morning telling me that my CMV markers have failed to respond to the antiviral tablets I have been on for the past week. My blood tests on Tuesday showed that the marker is still high, so I am having to be readmitted tomorrow (bed permitting) for a two week course of intravenous antiviral drugs. Oh Lordy! Another blank window to stare out of - unless of course I get a slice of sky. This, as you can imagine, is disappointing news. But I guess in the long run is the best course of action to take. Also the tablets have affected my blood counts and my neutrophils and WBC are both very low again. Medical team do not want this to happen. So all in all...
I am also suffering again from daily battle with nausea and it would be good to see if they can sort this as I am exhausted with feeling sick all the time and battling with a tender stomach. I know this is to do all the medication I am on (was put on more on Tuesday too, for a returning bladder infection). My current daily swallow is 17 tablets... way too many. Food and drink have become really hard work - there is nothing I feel like eating and my fluid intake is way too low. No temperatures though. 4pm and I have just managed twice round the roundabout (hanging onto Luigi's steady arm). Lovely soft pink candlyfloss sky.
Once back inside Kings I am going to try not to revert to 24 hours bed rest (a lazy habit of mine). The problem is that if I get up and dressed there is no-where to go apart from up and down a corridor with a mask tied round my face. I will have to think of something clever to do. I have been knitting bunting for my studio - which sounds bizarre - but has kept me occupied for the last couple of weeks. Click click clack. k1 p1 drop one, swear! Soon I will have yards/ metres of red triangles to string up.
The bone marrow was short swift and pretty damn painful. I did a lot of 'OOOOOwwwching' as they injected the bone and hissed blue air. But it was over quickly. Apart from a bruised hip I am not much worse for wear. Though where they are going to find bone to apple cork out soon is a mystery to me. I still have to have regular bone marrow biopsies for the next few years...
Final word is that a pair of nuthatches and a dunnock arrived on the bird feeder this afternoon. So pleased. Word is getting round. Also a long tailed tit is hanging around in the trees. Now we have a robins, jays, great tits, blue tits, nut hatches, dunnock and a pair of blackbirds. Plus the two squirrels (hand fed by Luigi) and the wood mouse. Quite a gathering. I will think of them all while tied to my drip.
Next stop Kings. Will update from a room-with-a-view. As always great to hear from so many people - and all those "unknowns" who have so kindly written, thank you. The world is a very good place! Greetings to everyone. North and South. Back soon tch xx
Sunday, 3 February 2013
OUT OF THE BLUE
Dear All,
An unexpected visit on Friday afternoon: one of the Dr's came into my room and informed me that I could go home! Thrilled and surprised all rolled into one. But the thing that made my heart leap most of all was my counts, which had taken a sudden turn for the better all on their own - well maybe due to a change in antibiotics - or possibly even a reflexology treatment given to me by Amanda two days earlier... Whatever, the babies have got their act together and building neutrophils and white blood cells. Over the past week they were continually falling (along with my mood) till neutrophils had reached 0.60 and I had the possibility of having to have further stomach injections of GCSF (bad bone side effects). I was panicking that my bone marrow cupboard was bare and that nothing was regenerating. Its so easy to get into a spiral of anxiety. Anyway, it all turned right in the end. The white paper given to me by Dr Robin showed counts standing up and being counted. Mel came and collected us from Kings at 8pm. A ride home in my car. Whoopee! My very own car. Seems an age since I was sitting in it. Miss driving so much.
Been back at Grassmount for almost 2 days now (sorry for extended delay in blog publication!). Very tired. No appetite. But sleeping better than in the hospital. Still hours worth of medications to sort out and take everyday. Nausea a bit more under control. Lost some lbs, which is a good thing. Hair growing back in strange patches. So I look very chemo head still. Some areas full of hair, others virtually bald still. They say that after TBI hair often grows back thinner. Seems that may be happening to me. Got dressed this afternoon and managed to walk once round the roundabout hanging onto Luigi's arm. Lots of bird song. A saxaphone playing out of a window somewhere. Flat grey February sky. It was good to stretch my legs. Stiff with lack of exercise. My neighbour appeared with a Welcome Home bottle of wine, which was very much appreciated!
Tuesday I have a bone marrow biopsy to look forward too...My back is littered with apple-corer scars. My hip bone must look like a sieve. Hope there is still bone left to core... All my clinic appointments, kick into gear again, blood tests, urine samples, nebulisers etc etc. I hope this time round I can stay well for a bit longer. In fact a lot longer would be good. Problem is the reactivation of viruses - which normally my immune system would bat away without a second glance, but this new one is going to take time to get itself into adult defence mode - so I am always facing the possibility of succumbing to something relatively innocuous. Nor do I need to get noro virus or any type of flu. Lots of dodging and diving.
I am a great aunt for the Fourth Time. Kenzo Clode born on February 1st in Hong Kong. A dragon baby. I hope he roars and roars. Well done Jack and Aska!
Greetings all, round and round. Too tired to write anymore. Except thanks for all your loyal and continued support. Gives me huge strength and really helps when times get emotionally tough. Ian, Sound and Vision was the exact song I had in mind when referencing all those blues! Great minds etc and thanks for the Donegal lullabies.
Back soon. tch xx ps. hoping for a liverpool win this afternoon, then Utd sitting comfortably on top.
An unexpected visit on Friday afternoon: one of the Dr's came into my room and informed me that I could go home! Thrilled and surprised all rolled into one. But the thing that made my heart leap most of all was my counts, which had taken a sudden turn for the better all on their own - well maybe due to a change in antibiotics - or possibly even a reflexology treatment given to me by Amanda two days earlier... Whatever, the babies have got their act together and building neutrophils and white blood cells. Over the past week they were continually falling (along with my mood) till neutrophils had reached 0.60 and I had the possibility of having to have further stomach injections of GCSF (bad bone side effects). I was panicking that my bone marrow cupboard was bare and that nothing was regenerating. Its so easy to get into a spiral of anxiety. Anyway, it all turned right in the end. The white paper given to me by Dr Robin showed counts standing up and being counted. Mel came and collected us from Kings at 8pm. A ride home in my car. Whoopee! My very own car. Seems an age since I was sitting in it. Miss driving so much.
Been back at Grassmount for almost 2 days now (sorry for extended delay in blog publication!). Very tired. No appetite. But sleeping better than in the hospital. Still hours worth of medications to sort out and take everyday. Nausea a bit more under control. Lost some lbs, which is a good thing. Hair growing back in strange patches. So I look very chemo head still. Some areas full of hair, others virtually bald still. They say that after TBI hair often grows back thinner. Seems that may be happening to me. Got dressed this afternoon and managed to walk once round the roundabout hanging onto Luigi's arm. Lots of bird song. A saxaphone playing out of a window somewhere. Flat grey February sky. It was good to stretch my legs. Stiff with lack of exercise. My neighbour appeared with a Welcome Home bottle of wine, which was very much appreciated!
Tuesday I have a bone marrow biopsy to look forward too...My back is littered with apple-corer scars. My hip bone must look like a sieve. Hope there is still bone left to core... All my clinic appointments, kick into gear again, blood tests, urine samples, nebulisers etc etc. I hope this time round I can stay well for a bit longer. In fact a lot longer would be good. Problem is the reactivation of viruses - which normally my immune system would bat away without a second glance, but this new one is going to take time to get itself into adult defence mode - so I am always facing the possibility of succumbing to something relatively innocuous. Nor do I need to get noro virus or any type of flu. Lots of dodging and diving.
I am a great aunt for the Fourth Time. Kenzo Clode born on February 1st in Hong Kong. A dragon baby. I hope he roars and roars. Well done Jack and Aska!
Greetings all, round and round. Too tired to write anymore. Except thanks for all your loyal and continued support. Gives me huge strength and really helps when times get emotionally tough. Ian, Sound and Vision was the exact song I had in mind when referencing all those blues! Great minds etc and thanks for the Donegal lullabies.
Back soon. tch xx ps. hoping for a liverpool win this afternoon, then Utd sitting comfortably on top.
Tuesday, 29 January 2013
COCKROACH IN MY BATHROOM...
....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
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
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
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