Dear all,
After last positive post, ' fraid I have to report not such good news. Been a difficult week just passed. Spent 4 out of 5 days in the day unit having various infusions and transfusions ( 10 hours on Friday ...) I have developed a condition known as Auto Immune Haemolytic Anemia, which basically means my own immune system isn't recognising my red blood cells and as a result is destroying them (how very cannibal like..) leaving me, tired, breathless and anemic. Hence all the blood transfusions (3 this week). I have been put on a high dose of steroids too to try and sort the problem. So soon I will probably have a moon face. Oh great! Hospital are trying everything to keep me at home, which I really appreciate. I so don't want to have to go back inside. But one big concern is the steroids could reactivate the BK virus (spasming bladder) which would mean another trip into hospital and god knows how many weeks of pain. So fingers crossed please that this scenario doesn't happen!
Also have been struggling since December with very bad tinnitus and hearing loss, probably due to the various toxic medications I am having to take. After months of waiting I finally got to see a hearing specialist this week. Had various tests done. It was confirmed that some nerves are damaged (permanently they say, but we'll see) and I have mild to moderate hearing loss, which means I will be given hearing aids. Lordy, old lady, or what!
I am back in HOP clinic tomorrow at 9.30 (stands for Haematology Outpatients by the way) for more bloods and probably some immunoglobulin. This is yet another blood product which I have been infused with all week (5 hour sessions hooked up to a drip stand and "giving machine"). Immunoglobulins help lymphocytes fight infections. My immunoglobulin is low at the moment, hence the infusions. Its really has been a tough week. Missed most of the lovely spring sunshine too. Though did catch a great sunset on Friday night which was a joy to see.
It's Sunday night. Luigi and I just eaten great roast chicken. He is going back to Italy this week, which is making me very sad. He will be irreplaceable. Don't know for how long he will be gone for, but it's the biennale in Venice, opening in three weeks time. So my guess is quite a number of weeks. I will just have to get used to being independent again...and thanks in advance to north and south London friends who have already signed up for shopping, cooking, and companionship. I appreciate your support so much. Gonna need it over the next weeks...
Bed for me now. Hope everyone well. Thanks for all blog comments. Lovely to hear from everyone - north, south, east and west. Lets hope first week of May brings sunshine and my immune system starts to sort itself out. Love to all. Blue skies. Back soon. tch xxx
Sunday, 28 April 2013
Thursday, 18 April 2013
QUICK CATCH UP...
Ciao Tutti,
Cant believe a week has sped by since I last wrote a blog entry. Life beginning to turn with a bit of a pace...
I didn't have to go back in over last weekend for rehydration. Phweeee. Managed to swallow enough water just to keep the figures low enough for the hospital to say I could stay at home. But still having to try to drink 2 - 3 litres of water a day, which is virtually impossible. So always running a risk that they may call me back in for "fluid input". Last Friday my bloods dropped rather dramatically, everything falling to below the plimsoll line (well, at least thats how I envisage it). So spent a fretful weekend stressing that the leukaemia had come back and the bone marrow had failed... Bad dreams. Oh dear. Still so very fragile emotionally. One small chink can set me off! Anyway, Tuesday came and bloods had bounced back up again (lets hear it for Baby Number One...) and my bone marrow result from 3 weeks ago showed completed remission. So I buzzed out of HOP clinic. The sun was out, the sky was blue and Luigi and I shuffled along to Ruskin Park (to be fair, Luigi walked and I shuffled) and sat on an old wooden park bench, deeply carved with names and dates. Everything just on the edge of bursting into flower or leaf. I just drank it all in. It was one of those "good to be alive" moments.
I am still struggling with fatigue. The hospital tell me I will do for quite some time to come. Getting up is still extremely hard work. And doing virtually anything can knock me for six - from making a sandwich for myself, having a bath, even getting dressed. I am slow and grey. A bit like a sloth I guess.
But, slowly slowly catch your monkey. I have seen some more friends. Tea time visits are good. I am at my most alert then. And seeing people really helps me to climb out of my hamster wheel. Very good medicine. Thanks to everyone who has come round - bearing wonderful gifts: smoked salmon bagels, french macaroons, home made scones and marmalade, bunches of flowers. I am spoilt.
Today I managed three times round the roundabout. Decked out in wellington boots and raincoat, as there was a massive downpour earlier. Then clean spring sunshine. Blackbird singing as I walked around (walked, not shuffled, this time). I can manage the stairs a bit better now too. Some days easier than others.
HOP clinic again tomorrow, so I need to swallow some more water to keep my kidneys flushing through. Don't want a bad result.
Your messages of support have been fantastic. So great to know you are all out there and still on the journey with me. I wish I could respond to all of you individually. My apologies that I don't. I would be tied to this computer. But you know how much it means to hear from you. Keeps my (sometimes flagging) spirit going - and for that I thank you all. For those of you not in London - we are about to hit spring big time. Magnolias are budding and ready to burst forth. Mad pink cherry will soon be lining almost every street. Armies of daffodils are standing proud. I hope we are blessed with a brilliant bright spring. We all deserve it. Wherever you are reading this, hope the sun is shining for you.
A presto! High fives! And a whole lotta love round the globe.
Back soon tch xxx
Cant believe a week has sped by since I last wrote a blog entry. Life beginning to turn with a bit of a pace...
I didn't have to go back in over last weekend for rehydration. Phweeee. Managed to swallow enough water just to keep the figures low enough for the hospital to say I could stay at home. But still having to try to drink 2 - 3 litres of water a day, which is virtually impossible. So always running a risk that they may call me back in for "fluid input". Last Friday my bloods dropped rather dramatically, everything falling to below the plimsoll line (well, at least thats how I envisage it). So spent a fretful weekend stressing that the leukaemia had come back and the bone marrow had failed... Bad dreams. Oh dear. Still so very fragile emotionally. One small chink can set me off! Anyway, Tuesday came and bloods had bounced back up again (lets hear it for Baby Number One...) and my bone marrow result from 3 weeks ago showed completed remission. So I buzzed out of HOP clinic. The sun was out, the sky was blue and Luigi and I shuffled along to Ruskin Park (to be fair, Luigi walked and I shuffled) and sat on an old wooden park bench, deeply carved with names and dates. Everything just on the edge of bursting into flower or leaf. I just drank it all in. It was one of those "good to be alive" moments.
I am still struggling with fatigue. The hospital tell me I will do for quite some time to come. Getting up is still extremely hard work. And doing virtually anything can knock me for six - from making a sandwich for myself, having a bath, even getting dressed. I am slow and grey. A bit like a sloth I guess.
But, slowly slowly catch your monkey. I have seen some more friends. Tea time visits are good. I am at my most alert then. And seeing people really helps me to climb out of my hamster wheel. Very good medicine. Thanks to everyone who has come round - bearing wonderful gifts: smoked salmon bagels, french macaroons, home made scones and marmalade, bunches of flowers. I am spoilt.
Today I managed three times round the roundabout. Decked out in wellington boots and raincoat, as there was a massive downpour earlier. Then clean spring sunshine. Blackbird singing as I walked around (walked, not shuffled, this time). I can manage the stairs a bit better now too. Some days easier than others.
HOP clinic again tomorrow, so I need to swallow some more water to keep my kidneys flushing through. Don't want a bad result.
Your messages of support have been fantastic. So great to know you are all out there and still on the journey with me. I wish I could respond to all of you individually. My apologies that I don't. I would be tied to this computer. But you know how much it means to hear from you. Keeps my (sometimes flagging) spirit going - and for that I thank you all. For those of you not in London - we are about to hit spring big time. Magnolias are budding and ready to burst forth. Mad pink cherry will soon be lining almost every street. Armies of daffodils are standing proud. I hope we are blessed with a brilliant bright spring. We all deserve it. Wherever you are reading this, hope the sun is shining for you.
A presto! High fives! And a whole lotta love round the globe.
Back soon tch xxx
Thursday, 11 April 2013
ONE STEP FORWARD TWO STEPS BACK...
Ciao tutti,
Sorry such along time for blog to appear...I'd like to say its because I have been having a ball, but sadly, that's not true. I am exhausted most of the time. Spend too much time in bed sleeping (least that's what the hospital say) and when I am up and dressed I just get whacked out really easily. I have been doing small domestic chores: a little bit of ironing one day (I find ironing very relaxing...seriously) 15 minutes in the garden pruning - that gave me great pleasure - over a couple of days. Emailing short messages, paying bills, walking up and down stairs to try and strengthen my leg muscles, which are still ridiculously weak. I am in Hop Clinic two or three days a week. The clinic sessions really wipe me out: X-rays, intravenous fluids, blood tests etc and a lot of hanging about in between treatments. They really are pigs-of-a-day. I get home normally between five and six and just go straight to bed.
So that has been my life really since my last blog. Slow and steady and still painful with my continuing bladder infection. I feel guilty about spending so much time in bed. But it is very easy just to pull the duvet high and fall asleep. The hospital say iTs chronic fatigue syndrome and the less i do, the harder its going to get to do anything. so I know I have to make a bit more of an effort to engage with the world. But blimey, its hard work!
This week though I have at last started to see some people, which has been great and taken me out of my little world. Very therapeutic. But very tiring. Thanks to those people who have come by, I have enjoyed your company big time.
It's 8pm now and I am already in bed (so cosy!). Tomorrow I have clinic. Have to be there for 10am. Tomorrow too they might have to re-admit me. My kidneys have been playing up and not working properly. I have been drinking like a fish, 2 /3 liters of fluid a day (that's hard work) but it doesn't seem to have done the trick. One of the immune suppressant drugs they have me on is very toxic for the kidneys. It seems mine are taking a battering; so I may have to go in for 48 hours or so of intravenous liquids...not happy about this. But will just have to grin and bear it if it is the case.
That's all for now. Wish I had the energy to write more and to write better. I guess it will come back at some point. If I am at home this weekend I have a plan to do some more pruning. Fingers crossed. Big hallo and love to both hemispheres. And hopefully get some more visitors round very soon. tch xxx
PS Gill, great to get your message. Am unable to reply as this blog doesn't seem to have that facility. If you would like to email more, please go to my website, www.tessaholmes.com and send me a message from there, that way I can reply to you. Forty years...
Sorry such along time for blog to appear...I'd like to say its because I have been having a ball, but sadly, that's not true. I am exhausted most of the time. Spend too much time in bed sleeping (least that's what the hospital say) and when I am up and dressed I just get whacked out really easily. I have been doing small domestic chores: a little bit of ironing one day (I find ironing very relaxing...seriously) 15 minutes in the garden pruning - that gave me great pleasure - over a couple of days. Emailing short messages, paying bills, walking up and down stairs to try and strengthen my leg muscles, which are still ridiculously weak. I am in Hop Clinic two or three days a week. The clinic sessions really wipe me out: X-rays, intravenous fluids, blood tests etc and a lot of hanging about in between treatments. They really are pigs-of-a-day. I get home normally between five and six and just go straight to bed.
So that has been my life really since my last blog. Slow and steady and still painful with my continuing bladder infection. I feel guilty about spending so much time in bed. But it is very easy just to pull the duvet high and fall asleep. The hospital say iTs chronic fatigue syndrome and the less i do, the harder its going to get to do anything. so I know I have to make a bit more of an effort to engage with the world. But blimey, its hard work!
This week though I have at last started to see some people, which has been great and taken me out of my little world. Very therapeutic. But very tiring. Thanks to those people who have come by, I have enjoyed your company big time.
It's 8pm now and I am already in bed (so cosy!). Tomorrow I have clinic. Have to be there for 10am. Tomorrow too they might have to re-admit me. My kidneys have been playing up and not working properly. I have been drinking like a fish, 2 /3 liters of fluid a day (that's hard work) but it doesn't seem to have done the trick. One of the immune suppressant drugs they have me on is very toxic for the kidneys. It seems mine are taking a battering; so I may have to go in for 48 hours or so of intravenous liquids...not happy about this. But will just have to grin and bear it if it is the case.
That's all for now. Wish I had the energy to write more and to write better. I guess it will come back at some point. If I am at home this weekend I have a plan to do some more pruning. Fingers crossed. Big hallo and love to both hemispheres. And hopefully get some more visitors round very soon. tch xxx
PS Gill, great to get your message. Am unable to reply as this blog doesn't seem to have that facility. If you would like to email more, please go to my website, www.tessaholmes.com and send me a message from there, that way I can reply to you. Forty years...
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