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Sunday, 29 July 2012
COUNTING DOWN
Friday, 27 July 2012
GOING FOR GOLD
Things are now picking up a pace - only a few days left before my return to Samaritan Ward. A visit to the day unit yesterday to discover my blood counts have dropped even further and I am now neutropenic. So no more havelock barbecues, or train rides or crowded places (though Luigi and I did do a quick sprint into sainsbury's this morning to pick up supplies for Lilly). Food boiled to a mush and everything must be pasteurised. Soft fruit, salad, eggs, soft cheeses etc, all off my menu for a while. Two days ago Lulu, Jan and I ate a colour-scape of fresh berries: raspberries, strawberries and blueberries, with fat white dollops of organic yogurt. Got in there just in time... Luigi arrived from Venezia yesterday. Am having to re-aquaint him with household gadgets - practical skills are not his forte! So good to have him here. Talk in Italian. Asparagus risotto tonight.
Bad news is that I have a rare tissue type (oh, so bloody typical) and despite world wide search, no donor match is showing up on the computer (perhaps it needs to be re-booted). This means they are now doing a search for "cord donors"(stem cells are taken from umbilical cords of new born babies) - and failing that, Adrian will be called upon to give me some of his stem cells (your best bunch Aid!) He is 5/10 match, but apparently there is a new research going on showing "promising results" for 5/10 sibling matches. So could be that my darling brother saves my life. This really all feels a bit much to take in. I had been told initially that a donor match should be reasonably easy. So I was totally unprepared for yesterdays news and my heart hit the floor at some speed when it was announced. Seems the tightrope I am walking is getting tauter by the day. No slippage allowed. All this information just drives my anxiety levels up. Warm, strong arms to rock me at least. I guess it will be best to get in and get started. What a marathon ahead. Puff x an awful lot more. I want to win gold. Infact, I must win gold.
Lots of you out there have said you would be happy to donate bone marrow. I don't think you can donate for me but you can sign up to Anthony Nolan Trust at http://www.anthonynolan.org or the British Bone Marrow Registry at http://www.nhsbt.nhs.uk/bonemarrow/ - if not my life, it will be someone else's you help to save. I will try and find out a bit more info. But this is a start. Over 50's need not apply - so that wipes out at least half of you!
Switching off from all things blood and bone marrow now. Off for a hair cut (before it all falls out) courtesy of the Sisters on Havelock Walk - thanks you all for your generosity and inspired idea! Then will plug into the Olympic Ceremony. When the London win was announced all those years ago, Luigi and I were in the car driving down the A303 heading for Croyde: sea, surf and summer camp. We had the radio on and the roof open. It was blazing blue and we hooped a big cheer and sounded the horn... so glad we cannot see into the future.
Bad news is that I have a rare tissue type (oh, so bloody typical) and despite world wide search, no donor match is showing up on the computer (perhaps it needs to be re-booted). This means they are now doing a search for "cord donors"(stem cells are taken from umbilical cords of new born babies) - and failing that, Adrian will be called upon to give me some of his stem cells (your best bunch Aid!) He is 5/10 match, but apparently there is a new research going on showing "promising results" for 5/10 sibling matches. So could be that my darling brother saves my life. This really all feels a bit much to take in. I had been told initially that a donor match should be reasonably easy. So I was totally unprepared for yesterdays news and my heart hit the floor at some speed when it was announced. Seems the tightrope I am walking is getting tauter by the day. No slippage allowed. All this information just drives my anxiety levels up. Warm, strong arms to rock me at least. I guess it will be best to get in and get started. What a marathon ahead. Puff x an awful lot more. I want to win gold. Infact, I must win gold.
Lots of you out there have said you would be happy to donate bone marrow. I don't think you can donate for me but you can sign up to Anthony Nolan Trust at http://www.anthonynolan.org or the British Bone Marrow Registry at http://www.nhsbt.nhs.uk/bonemarrow/ - if not my life, it will be someone else's you help to save. I will try and find out a bit more info. But this is a start. Over 50's need not apply - so that wipes out at least half of you!
Switching off from all things blood and bone marrow now. Off for a hair cut (before it all falls out) courtesy of the Sisters on Havelock Walk - thanks you all for your generosity and inspired idea! Then will plug into the Olympic Ceremony. When the London win was announced all those years ago, Luigi and I were in the car driving down the A303 heading for Croyde: sea, surf and summer camp. We had the radio on and the roof open. It was blazing blue and we hooped a big cheer and sounded the horn... so glad we cannot see into the future.
Tuesday, 24 July 2012
NUCLEAR MEDICINE
A blue door with single plaque reading "injection room". Highly inviting. Inside there is a large padded blue chair sitting starkly in the middle of the room. I think immediately of the Andy Warhol print "Electric Chair" (1964 - thanks google). I joke this with the nurses - who, smiling beguilingly, nod and say, "yes, other patients say the same thing"... "you seem a bit tense" noted the nurse with black rimmed glasses. Not half! Two injections - 20 minutes apart - one to prepare my veins (I hate having my veins prepared) and the second when radioactive fuel is administered. 4 nurses at this point. Its designed to make you nervous. Reading out of my details: confirmation of my DOB, hospital no Z458779 (that number is etched into my brain). All witnessed and signed. I am asked could I be pregnant or breast feeding...Oh Lord, give me a break! Do I look like I could be either of these things? I am sitting on the electric blue padded chair; the male Malaysian nurse has trouble finding a vein in the crook of my arm (this is due to thinning of my veins from previous chemo) - so heads for the back of my hand. Ouch! This is painful. Have to remain still. About a minute of slow transfusion. He pushes the plunger thing too fast - it stings. I am told that my all my veins are now sensitive due to prior treatment - which means the next few months is going to be horribly painful. Needles and Leukeamia go hand in hand. Radioactive liquid mingles round my blood stream, but I don't glow or sparkle or fizz. Thats a bit of a let down. All this, for not much. I am led into scanning room and lay down on the scan bed. Electrodes are stuck all over my torso and a big camera contraption placed near my heart. I can hear my heart thumping, so it better show up good on the screen. There is a long silence. The scan nurse goes out and returns with two more. Mumbled discussion from behind the back of my head. What! Seems an age before they come over and talk to me. I am thinking: has previous chemo damaged my heart? Is it pumping correctly? Got to have a heart that is in full working order - strong enough to take the Flagida (apparently, the most toxic chemo they have...nice). Ahh, saved by technology. My heart working good, it's the computer that is causing problems and not saving images. Computer is re-booted and I am re-scanned.
I am out and walking along the south-bank by midday. The place is full of pre-olympic madness. Cameras, ice-creams and wild wurlitzer music. I note particularly a young ballerina in a tutu pirouetting and jumping and flexing (not good on ballet terms). Seems incongruous somehow, her, amongst the clowns, the painted giants and boom boxes. Hot and blue sky, finally. Just in time for the grand parade on Friday. I cross over Hungerford Bridge - Thames is low tide, chocolate brown. My eye catches the Shard and sitting in its shadow lies Guys Hosptial. Not the most welcome sight. I puff some more and head up to Covent Garden and buy myself an iPhone (better not get stolen this time). 3G, 8gb. Note to all those of you who know my tendency for techno-kit - this is the most basic it gets for an iPhone. I am being very abstemious. I am keeping my £12 sim only contract. Not falling for the bells and whistles of a 24 month tie in! I have lunch with Joe. We sit in the shadow of covent garden church, eating M&S sandwiches. We talk bone marrow treatment and watch some bare-chested-unicycle-chainsaw-wielding performer doing his thing over the cobbles of the piazza. This is incongruous too. There is a big crowd. Its noisy and hot.
Home by 3 and lay, shattered, on my sofa and look at my July garden (note it needs watering for the first time in weeks) and the cut-out shape of blue sky behind the trees on Grassmount. There is a tiredness starting to creep over me, which just feels enormous. And my legs ache deep down. I hope it is all just psycosamatick (no spell check for this spelling - I beat the computer!). Puff again. I know its not. This is mutant genes doing their thing. The reality of next week focuses in just a little bit sharper. Lilly, just being Lilly, comes over and sits by my side. Cleans her whiskers with her soft apricot paws. Wonderfully oblivious and demanding food. But her little legs too, are bent and fragile, full of arthritis. Sometimes she walks all wobbly across the floor. Her kidneys are starting to pack up and cat dementia is creeping in. Me and her. Blimey - what a pair!
Luigi arrives on Thursday. My 5 star camping man. My diamond and my rock. My heart thrills and I put out all the bunting in my head. Yards of it.
I am out and walking along the south-bank by midday. The place is full of pre-olympic madness. Cameras, ice-creams and wild wurlitzer music. I note particularly a young ballerina in a tutu pirouetting and jumping and flexing (not good on ballet terms). Seems incongruous somehow, her, amongst the clowns, the painted giants and boom boxes. Hot and blue sky, finally. Just in time for the grand parade on Friday. I cross over Hungerford Bridge - Thames is low tide, chocolate brown. My eye catches the Shard and sitting in its shadow lies Guys Hosptial. Not the most welcome sight. I puff some more and head up to Covent Garden and buy myself an iPhone (better not get stolen this time). 3G, 8gb. Note to all those of you who know my tendency for techno-kit - this is the most basic it gets for an iPhone. I am being very abstemious. I am keeping my £12 sim only contract. Not falling for the bells and whistles of a 24 month tie in! I have lunch with Joe. We sit in the shadow of covent garden church, eating M&S sandwiches. We talk bone marrow treatment and watch some bare-chested-unicycle-chainsaw-wielding performer doing his thing over the cobbles of the piazza. This is incongruous too. There is a big crowd. Its noisy and hot.
Home by 3 and lay, shattered, on my sofa and look at my July garden (note it needs watering for the first time in weeks) and the cut-out shape of blue sky behind the trees on Grassmount. There is a tiredness starting to creep over me, which just feels enormous. And my legs ache deep down. I hope it is all just psycosamatick (no spell check for this spelling - I beat the computer!). Puff again. I know its not. This is mutant genes doing their thing. The reality of next week focuses in just a little bit sharper. Lilly, just being Lilly, comes over and sits by my side. Cleans her whiskers with her soft apricot paws. Wonderfully oblivious and demanding food. But her little legs too, are bent and fragile, full of arthritis. Sometimes she walks all wobbly across the floor. Her kidneys are starting to pack up and cat dementia is creeping in. Me and her. Blimey - what a pair!
Luigi arrives on Thursday. My 5 star camping man. My diamond and my rock. My heart thrills and I put out all the bunting in my head. Yards of it.
Friday, 20 July 2012
TREATMENT UPDATE
Hallo all,
Yesterday another visit to Haematology Day Unit, Floor 4, Southwark Wing, Guys Hospital. I had held onto a small but beautifully shaped thought that maybe the haemo lab. made some mistake last week. But no. Blood counts still dropping and confirmation that treatment will start on July 30th. So 10 days or so to chill (!) get myself organised and potter twixt garden and studio. And hopefully share a mug of tea or two with some of you. Monday 23rd I am having a MUGA scan - injection of radiation (mmm, nice) and then lots of wires stuck all over me to monitor my heart - to check it is strong enough to cope with ensuing onslaught. It better be. And some. Think my chemo regime will be something called FLAGIDA (for those medical people out there) - which is a combination of chemos including the foul cytarabin that I had to cope with last time (had a bad reaction - but they insist I will be monitored closely). Horrible bag of short term and long term side-effects. Hey ho. 5 days of chemo and if my body handles it, I will be allowed home after a week or so to recover. If I get sick, wam bam, straight back into hospital. How familiar all this sounds... Second round of chemo will take place early September. As above. Then, providing I am in remission I move on over to Kings and the bone marrow transplant mid to later October. More of which later. One day at a time (sweet jesus!). Needless to say, I feel wide eyed, stunned and almost speechless (almost, note!) with this new lot of information to absorb. I find myself wandering around the house doing a lot of loud puffing - and quite a bit of swearing. Short relief. Lilly keeping a low profile.
On a brighter note, I have just had notification that I have had work accepted for both BITE and RE-Open (london based printmaking exhibitions, one at Mall Galleries and one at The Bankside Gallery). Very pleased about this. A good result amongst all this mayhem. Forest Hill is steely grey - while I have had a report of hot x hot in Venice this morning. Thanks everyone for blog comments and emails. Great to hear from you. Catch you all later. tch
Yesterday another visit to Haematology Day Unit, Floor 4, Southwark Wing, Guys Hospital. I had held onto a small but beautifully shaped thought that maybe the haemo lab. made some mistake last week. But no. Blood counts still dropping and confirmation that treatment will start on July 30th. So 10 days or so to chill (!) get myself organised and potter twixt garden and studio. And hopefully share a mug of tea or two with some of you. Monday 23rd I am having a MUGA scan - injection of radiation (mmm, nice) and then lots of wires stuck all over me to monitor my heart - to check it is strong enough to cope with ensuing onslaught. It better be. And some. Think my chemo regime will be something called FLAGIDA (for those medical people out there) - which is a combination of chemos including the foul cytarabin that I had to cope with last time (had a bad reaction - but they insist I will be monitored closely). Horrible bag of short term and long term side-effects. Hey ho. 5 days of chemo and if my body handles it, I will be allowed home after a week or so to recover. If I get sick, wam bam, straight back into hospital. How familiar all this sounds... Second round of chemo will take place early September. As above. Then, providing I am in remission I move on over to Kings and the bone marrow transplant mid to later October. More of which later. One day at a time (sweet jesus!). Needless to say, I feel wide eyed, stunned and almost speechless (almost, note!) with this new lot of information to absorb. I find myself wandering around the house doing a lot of loud puffing - and quite a bit of swearing. Short relief. Lilly keeping a low profile.
On a brighter note, I have just had notification that I have had work accepted for both BITE and RE-Open (london based printmaking exhibitions, one at Mall Galleries and one at The Bankside Gallery). Very pleased about this. A good result amongst all this mayhem. Forest Hill is steely grey - while I have had a report of hot x hot in Venice this morning. Thanks everyone for blog comments and emails. Great to hear from you. Catch you all later. tch
Thursday, 19 July 2012
GLAD ALL OVER
Ciao Tutti!
Venezia: bright blue and brilliant. A perfect five days, wrapped up in sunshine and Luigi. We were quietly domestic - slipping through the heat to the local co-op and filling our basket full of favourite things: cherries, peaches and hunks of sweet water melon. Fat plum tomatoes and mint green fennel. Mozzarella and mortadella. Fish from the tiny local stall. New apartment is just one minute from Giudecca waterfront, at the top of a small campo. You can lie in bed and hear the boats busying across the canal. Redentore fireworks were spectacular - a full half hour - enormous explosion cracking through the night sky and echoing around st marco basin. The Regatta took place late on sunday afternoon. Its all a mad splash of colour and chaos - and boy, are those gondoliers fit! I loaded up my camera with a lot of memories and used my iPad to record sounds. Isolation room and ward are so sealed off that its not possible even to hear a plane flying over or the screech of a police car - but now I have a great selection of noises to tune into: hot cicadas, rumbling vaporettas, paino practice drifting from an unknown window - even Luigi snoring. Hell, it'll be home from home!
So we cried a bit but laughed much more. We talked about our new home on Giudecca - when all this nightmare is past by - with a studio and a boat (which I will drive...better navigational skills!). We walked a lot - morning, noon and night. Stars and stuff. Rode the green waters of giudecca canal on No 2 vaporetto - salt air on my face and in my lungs. Spritz and Prosecco. Luigi warm, tender and solid as a rock. Feeling well all over, so hard to believe there are mutant genes gathering... Big time glad I went out. Just the best thing to do. Most of the time I was switched off from all that is about to happen. One thing I have learnt from the first time round, is how to appreciate the moment, the very here and now of life. Where your feet are stood, the spot you breath from. This is it. So precious - not to be wasted by filling the "now" with the "then". Enough with the philosophy.
Today I have another meeting with consultants. Another blood test. Maybe will know more about when everything starts. Back soon. tch
Venezia: bright blue and brilliant. A perfect five days, wrapped up in sunshine and Luigi. We were quietly domestic - slipping through the heat to the local co-op and filling our basket full of favourite things: cherries, peaches and hunks of sweet water melon. Fat plum tomatoes and mint green fennel. Mozzarella and mortadella. Fish from the tiny local stall. New apartment is just one minute from Giudecca waterfront, at the top of a small campo. You can lie in bed and hear the boats busying across the canal. Redentore fireworks were spectacular - a full half hour - enormous explosion cracking through the night sky and echoing around st marco basin. The Regatta took place late on sunday afternoon. Its all a mad splash of colour and chaos - and boy, are those gondoliers fit! I loaded up my camera with a lot of memories and used my iPad to record sounds. Isolation room and ward are so sealed off that its not possible even to hear a plane flying over or the screech of a police car - but now I have a great selection of noises to tune into: hot cicadas, rumbling vaporettas, paino practice drifting from an unknown window - even Luigi snoring. Hell, it'll be home from home!
So we cried a bit but laughed much more. We talked about our new home on Giudecca - when all this nightmare is past by - with a studio and a boat (which I will drive...better navigational skills!). We walked a lot - morning, noon and night. Stars and stuff. Rode the green waters of giudecca canal on No 2 vaporetto - salt air on my face and in my lungs. Spritz and Prosecco. Luigi warm, tender and solid as a rock. Feeling well all over, so hard to believe there are mutant genes gathering... Big time glad I went out. Just the best thing to do. Most of the time I was switched off from all that is about to happen. One thing I have learnt from the first time round, is how to appreciate the moment, the very here and now of life. Where your feet are stood, the spot you breath from. This is it. So precious - not to be wasted by filling the "now" with the "then". Enough with the philosophy.
Today I have another meeting with consultants. Another blood test. Maybe will know more about when everything starts. Back soon. tch
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| VENEZIA, FROM FLIGHT EZY5268 |
Thursday, 12 July 2012
HARD TO COMPUTE
Blimey - that first time round was a walk in the park compared to what lies ahead. I had a straight talking meeting with my haematology consultant today. I will make this short and sweet (sweet! ha).
A brief account of my treatment plan - it goes in stages - First: Two lots of chemo - stronger than before - (that'll be nice then) starting in a couple of weeks time. Date to be confirmed. I need to go into remission. No remission - no get out of jail card. So thats the first hurdle to jump. While chemo courses round my system, a world-wide data base search will be undertaken for a 10:10 donor match (lets hear it for a 10:10 donor match please). Next: late September, will have bone marrow transplant at Kings and will be hermetically sealed into isolation unit (see, Ripley all over) for about 3/4 weeks while, we hope, the new donor cells settle into place. Clearly this will be a testing time - and I will do battle with a host of aliens - infections and something called Graft Host Disease (GHD) whereby by my body will reject new cells - though apparently, providing you don't get too ill, this is a good thing - as it shows stuff is working. Once through with all that, I get out of my pod - then minimum of 6 months recovery time. Just in time for world cup qualifiers.
This is terror. Hard core. But I have no other choice. Sometimes life really deals a bum hand.
However, still well enough to fly to Venezia this weekend (two fingers up to you Luek.) and spend some precious time with Luigi in what he calls "our new flat". Its Redentore on Saturday night (firework festival) and there is a gondola race on Guidecca canal on Sunday. It's Venice's best weekend. The sun will shine and I will be in my favourite city with my favourite man. So couldn't ask for much more - well I could, that would be a lie. But in the circumstances...
Back next week. Ciao tutti. (sound familiar?)
A brief account of my treatment plan - it goes in stages - First: Two lots of chemo - stronger than before - (that'll be nice then) starting in a couple of weeks time. Date to be confirmed. I need to go into remission. No remission - no get out of jail card. So thats the first hurdle to jump. While chemo courses round my system, a world-wide data base search will be undertaken for a 10:10 donor match (lets hear it for a 10:10 donor match please). Next: late September, will have bone marrow transplant at Kings and will be hermetically sealed into isolation unit (see, Ripley all over) for about 3/4 weeks while, we hope, the new donor cells settle into place. Clearly this will be a testing time - and I will do battle with a host of aliens - infections and something called Graft Host Disease (GHD) whereby by my body will reject new cells - though apparently, providing you don't get too ill, this is a good thing - as it shows stuff is working. Once through with all that, I get out of my pod - then minimum of 6 months recovery time. Just in time for world cup qualifiers.
This is terror. Hard core. But I have no other choice. Sometimes life really deals a bum hand.
However, still well enough to fly to Venezia this weekend (two fingers up to you Luek.) and spend some precious time with Luigi in what he calls "our new flat". Its Redentore on Saturday night (firework festival) and there is a gondola race on Guidecca canal on Sunday. It's Venice's best weekend. The sun will shine and I will be in my favourite city with my favourite man. So couldn't ask for much more - well I could, that would be a lie. But in the circumstances...
Back next week. Ciao tutti. (sound familiar?)
Wednesday, 11 July 2012
BIDING TIME
Thanks for such a huge and quick response from so many people. Wow - won't all fit round that hospital bed! Have not improved on my computer skills since last time - so blog is already causing me a headache. I have put on a link for followers, but not sure if it works. Also will have to be updating my blog using my iPad while renewing bone marrow and discovered last night that I can't seem to upload photos using iPad. I am all of a confusion (x10) I guess I could put a link to Facebook, but don't have face book account... I can't even draw pictures and upload. If anyone of you is a geek re iPad/blogs etc etc (and I know there are a number of you out there) a tutorial would be most welcome...still got a few free days left.
Thursday I have an appointment with the haematology consultant (note: medical speak will soon overwhelm this blog - but today is sunny and my windows are open and I can hear the world outside - indeed, I will be walking into my garden with cup of tea and doing a bit of plant conversing as soon as I have posted this). I will get full run down of treatment plan, length, expectations etc etc - so will fill you all in on my next blog. Meantime, make hay while sun shines.
Thursday I have an appointment with the haematology consultant (note: medical speak will soon overwhelm this blog - but today is sunny and my windows are open and I can hear the world outside - indeed, I will be walking into my garden with cup of tea and doing a bit of plant conversing as soon as I have posted this). I will get full run down of treatment plan, length, expectations etc etc - so will fill you all in on my next blog. Meantime, make hay while sun shines.
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| Lilly - a bit fed up with the current situation |
Tuesday, 10 July 2012
RELAPSE
Well, the air is blue. Many shades of it. Back to the box marked "GO" (and I hope
another "get out of jail free" card). Really, really didn't want to be starting another blog. But such is life. Almost two years to the day since my first diagnoses. My head is just a torrent of clichés at the moment. Yesterdays low blood test result required further investigation - although I knew instinctively (but i wasn't counting chickens - well, actually I was, cluck bloody cluck). I had a bone marrow aspiration at 4pm and a phone call at 6.30pm which confirmed that leukaemia cells are back swarming around in my bone marrow. Many ****************'s and a lot of pacing around my sitting room floor, staring out of the window at the trees and sky. Life changes in a spit.
I know scant information at the moment. Treatment will start next week. Chemo at Guys and bone marrow transplant at Kings. I think this will be tougher than last time. I have to go into remission. They have to find a suitable donor. I hope that it is all seamless. I am hoping to get a quick trip to venice to see Luigi in his new flat this weekend. Consultant has said I am still well enough to go - so maybe a little bit of sunshine before the gathering storm...
I am rallying troops - as it really helps to have support and virtual contact. So please keep checking the blog. New name,"hairwegoagain" which seems very apt and thanks Aid for your quick thinking and inspiration. Couldn't face badhairday all over again! Though I am sure it will be. And it had all grown back so well too:
Back soon.
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