Still stumbling around the minefield, with no obvious end in sight. I have finally finished two week dose of Foscarnate, the drug I needed to control the CMV reactivation. But it is a really nasty drug with bad side effects. For me it has been my bladder with relentless pain and spasm. I have also had a reactivation of a Bladder virus called BK. The focus is now on my bladder to try and get that back to some level of normal functioning. Yesterday I had another 'endnethscopy' (total wrong word, but never the less, an oscopy) that involved cameras, biopsy scrapings, bladder function testing. Luckily it was all done under a general anaesthetic. Also had a new catheter put in.
I have never experienced such pain as with a bladder spasm. Has me yelling out frequently despite being pain killered up to the eye balls. Seriously had enough already. But I have to get through to next monday to see if there is any improvement. If not I may be given Botox direct into my bladder. This will apparently freeze the muscle and stop the spasming. I know, there are plenty of jokes in there somewhere...
Sorry, very much focused on my pain and misery. Thanks to so many of you, near and far for your constant and continued support. All your emails and blog comments have kept me going. Marina so brilliant to hear from you all, da bella Venezia. Tornerò presto. Lots of virtual hugs being sent and recieved right round the globe. Meantime, one day at a time, sweet Jesus.... Back soon tch xxx
Ps my mouth is so dry I have constant fantasy of burying my face into ice cold sweet water melon. I think about the fruit that luigi and I ate out in Venezia, all sweet, juicy and cold: dark red cherries, peaches and hunks of water melon. My taste buds currently totally corrupted. "Even water don't taste like what it oughta"
Thursday, 28 February 2013
Friday, 22 February 2013
Hard times
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, 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.
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