...By my reckoning it’s been over four years since I last updated this blog. It seems that people still read it, unless of course it is plagued by robots (quite possible). So incase anyone is out there reading this, I am writing to say that I am still here. Very much alive and kicking! Since I last wrote my recovery from transplant has gone from strength to strength. There will always be blips and blood tests and things that make me stress and worry - but this is my new normal - so I deal with it. I still struggle with my EBV levels, which, on occasion have gone so high I have been set smartly off for a PET scan, but despite fears, everything seems to be ok. I have a theory that if I get ill or run down my new immune system is unable to 'multitask' and that when the EBV muscles in and makes its presence felt - not that I necessarily feel ill or have symptoms, but my levels shoot up - log copy 6:2 was the highest I think.... I get tired quickly - or at least don’t have much 'spare battery'. A very busy day (or long journey) can take 48 hours to recover from!
Not going to write much more - I just wanted to indicate that I am very much waving, not drowning. Life is good. I still have my caravan. Still working in my studio. And loving everyday. Thrilled to bits to still be kicking around on this planet.
I remember when I was first diagnosed I was desperately searching the internet for information (dangerous) and reading endless blogs (helpful). They gave me great strength and comfort....but then they would just stop. And I never knew why, which was always concerning and upsetting on many levels. I guess I did the same. And maybe that could be distressing for any reader of this blog. My apologies if so.
So far, I, like many others, am proof that leukaemia can be overcome. SCT's work. The NHS is a brilliant health system. I owe my life to it.
Good luck if you too are on this journey. It’s a roller coaster. Hold tight, roll with it. It can be done.
For more info please contact me at etch@tessaholmes.com
February 2019
Saturday, 2 February 2019
Wednesday, 24 December 2014
MERRY CHRISTMAS 2014
Ciao Tutti!
who knows who still reads this blog...but for anyone who is - Merry Christmas and Happy 2015...
Have meant to update for weeks - but in the end, time, as usual has run away with me and I am tripping behind it - so this will be just a brief xmas eve round up.
I hit my two year transplant birthday on 11th December - which was quietly celebrated by me (humming happy birthday) and a glass of prosecco! But what a birthday - and I am thrilled to bits to have reached this point relatively unscathed. Well, I was scathed - but time is a great healer and luckily I have forgotten most of the uglier moments of my recovery. I am still struggling with this EB virus though - the levels rock up and down at an alarming rate - so I am currently having weekly blood tests - hospital keeping a close check on me. However, I have no symptoms of anything - and am always surprised when I get a phone call to say "levels have gone up". It is a bit of a blot on what would otherwise be a clear landscape as we run up to the new year. However, nothing to be done except for my usual "keep on keeping on". Hopefully over the next few months my new (ish) immune system will sort it out.
Normal life meanwhile continues to take shape. I have finally moved into my new studio in Havelock Walk - so brilliant to be back on the street. Even better to have a working space of my own. There was a Christmas Open Studio event a couple of weeks ago - which went pretty well for me - so a good confidence booster. I am looking forward to producing some new work. My animation course is very enjoyable - hard work though - and I find it hard to retain all the information - especially the technical stuff... I will try and post something on here - though not sure if it will work... Amazingly I managed to get an upgrade on my caravan pitch - so now have a new van (central heating and double glazing!) situated on the very edge of the park - looking directly out onto the Rye Nature Reserve. I have a small square of decking - where I have plans to mount a telescope - the huge sweep of night sky is too inviting to be left alone - also a small private area of "garden" which I will enjoy. I must also get a good bird table. Some great birds out there on the reserve. So the caravan has already become a much more exciting project than I originally thought. As this year closes, I can definitely say, "every cloud has a silver lining"...
Thats it. Short and sweet. Got to iron a pink shirt, wrap last presents and head out for an Xmas Eve supper. Hope anyone who is reading this has a wonderful festive season. To dear friends and total strangers, my thanks for your support and interest and for those occasional messages that still come through! This is my (probably) penultimate blog - to be honest, I am rather loath to finish it while this virus is still circulating round my system - to sign off right now might just be tempting providence - and I don't want to do that! So, I will be back in 2015 - for a bit at least. Meantime all best wishes for a peaceful and happy Christmas around the globe. Love to north, south east and west. Keep warm and well. Back next year. tch x
who knows who still reads this blog...but for anyone who is - Merry Christmas and Happy 2015...
Have meant to update for weeks - but in the end, time, as usual has run away with me and I am tripping behind it - so this will be just a brief xmas eve round up.
I hit my two year transplant birthday on 11th December - which was quietly celebrated by me (humming happy birthday) and a glass of prosecco! But what a birthday - and I am thrilled to bits to have reached this point relatively unscathed. Well, I was scathed - but time is a great healer and luckily I have forgotten most of the uglier moments of my recovery. I am still struggling with this EB virus though - the levels rock up and down at an alarming rate - so I am currently having weekly blood tests - hospital keeping a close check on me. However, I have no symptoms of anything - and am always surprised when I get a phone call to say "levels have gone up". It is a bit of a blot on what would otherwise be a clear landscape as we run up to the new year. However, nothing to be done except for my usual "keep on keeping on". Hopefully over the next few months my new (ish) immune system will sort it out.
Normal life meanwhile continues to take shape. I have finally moved into my new studio in Havelock Walk - so brilliant to be back on the street. Even better to have a working space of my own. There was a Christmas Open Studio event a couple of weeks ago - which went pretty well for me - so a good confidence booster. I am looking forward to producing some new work. My animation course is very enjoyable - hard work though - and I find it hard to retain all the information - especially the technical stuff... I will try and post something on here - though not sure if it will work... Amazingly I managed to get an upgrade on my caravan pitch - so now have a new van (central heating and double glazing!) situated on the very edge of the park - looking directly out onto the Rye Nature Reserve. I have a small square of decking - where I have plans to mount a telescope - the huge sweep of night sky is too inviting to be left alone - also a small private area of "garden" which I will enjoy. I must also get a good bird table. Some great birds out there on the reserve. So the caravan has already become a much more exciting project than I originally thought. As this year closes, I can definitely say, "every cloud has a silver lining"...
Thats it. Short and sweet. Got to iron a pink shirt, wrap last presents and head out for an Xmas Eve supper. Hope anyone who is reading this has a wonderful festive season. To dear friends and total strangers, my thanks for your support and interest and for those occasional messages that still come through! This is my (probably) penultimate blog - to be honest, I am rather loath to finish it while this virus is still circulating round my system - to sign off right now might just be tempting providence - and I don't want to do that! So, I will be back in 2015 - for a bit at least. Meantime all best wishes for a peaceful and happy Christmas around the globe. Love to north, south east and west. Keep warm and well. Back next year. tch x
 |
| Cat and christmice |
Thursday, 23 October 2014
CLOCKS GO BACK NEXT WEEK!
Ciao Tutti,
Oh my lord - its two months since I posted an update! I know there are still people out there who read this - so my usual apologies, once again, for the long silence. But pretty much, no news is good news. Bloods are all behaving themselves, and sitting happily bang-in-the-middle of normal. Except for my platelets which have been dropping over the last few months. No-one knows quite why. Unfortunately, I do have a virus shunting round my blood system at the moment. Its called Epstien Barr virus - linked to chicken pox and all related poxie-type things. Its not so hot for bone marrow transplant patients though, as it can kick off nasty stuff. However I have no symptoms of anything, which is a good sign. The hospital are doing are regular two weekly blood tests to monitor the virus levels. Hopefully my baby immune system (well, teenage I guess by now) will sort it out. But its taking its time! Maybe the drop in platelets is linked to the EB virus... I am also struggling with very painful bones. Me and early mornings aren't the best of friends! Have recently had tests and X-rays done for arthritis - so waiting to see if these produce any evidence. However, despite these hic-cups things are on the up. My immunisation programme has started. I even had a flu jab last week. Overall, I have much more energy, though probably will never recover to my pre-transplant level of zoomablity. Still easy-as-pie to get exhausted and then I have to shut down for a couple of days and recharge.
I have had a couple of late summer visits to the caravan. The brilliant and beautiful Indian summer has been a good excuse to get down there for some long weekends. Some great dusk walks along the shoreline. Watching the sky as it moves through the gears of sunset: to the west where it glows hot and loud, fire red and orange. To the east where it is brushed with hushed colours. Goose grey, pistachio green and pale blue. Out on the nature reserve there is a 360 degree view of this sunset. It is stunning. And the nights are deeply dark. The millions of stars which are so crisp and clear, really do shine like diamonds in the sky. My caravan was a good move!
Two really great pieces of news: One is I have started my animation course. This is very exciting. First exercise was to cut out and make an articulated puppet. This was then filmed. I had an aardvark (of sorts) doing somersaults! Its a 30 week course, designed to teach a selection of animation techniques. I hope at some point to combine this with my printmaking. Anyway, I am a student again, one day a week (and flop-out-flat when I get home after an intense 10 hour day) and really enjoying myself. The second even-better-news is that I have managed to secure a new studio back in Havelock Walk. For those of you who know me, you will know that this is a major step forward, on all sorts of levels. I am thrilled that I have another studio space back in the street. This means I can start work again. This means too that my life is starting to feel like mine again. I am functioning without the constant support of hospital. Though I will never completely rid the medical ties that bind me. But hey, small price to pay for my life back and pretty much in once piece. Thanks to the amazing advances in modern medicine, the dedicated work of the Antony Nolan trust and our amazing National Health Service, I am still here today. High Five indeed!
On that affirmative note I am off to cook myself supper! Hope all is good for everyone, everywhere. Not happy times around the globe I know. Lets hope peace prevails. Will be drawing this blog to a close in the next couple of months. I hit two years since my transplant on December 11th - so probably a good time to wrap up and say goodbye. Until then, love, high fives etc etc
back soon, tch x
ps. LVG still got to make a miracle at Old Trafford.
pps. photos of my beach-side retreat
beach combing
Rye Nature Reserve
the beach
rye harbour
Oh my lord - its two months since I posted an update! I know there are still people out there who read this - so my usual apologies, once again, for the long silence. But pretty much, no news is good news. Bloods are all behaving themselves, and sitting happily bang-in-the-middle of normal. Except for my platelets which have been dropping over the last few months. No-one knows quite why. Unfortunately, I do have a virus shunting round my blood system at the moment. Its called Epstien Barr virus - linked to chicken pox and all related poxie-type things. Its not so hot for bone marrow transplant patients though, as it can kick off nasty stuff. However I have no symptoms of anything, which is a good sign. The hospital are doing are regular two weekly blood tests to monitor the virus levels. Hopefully my baby immune system (well, teenage I guess by now) will sort it out. But its taking its time! Maybe the drop in platelets is linked to the EB virus... I am also struggling with very painful bones. Me and early mornings aren't the best of friends! Have recently had tests and X-rays done for arthritis - so waiting to see if these produce any evidence. However, despite these hic-cups things are on the up. My immunisation programme has started. I even had a flu jab last week. Overall, I have much more energy, though probably will never recover to my pre-transplant level of zoomablity. Still easy-as-pie to get exhausted and then I have to shut down for a couple of days and recharge.
I have had a couple of late summer visits to the caravan. The brilliant and beautiful Indian summer has been a good excuse to get down there for some long weekends. Some great dusk walks along the shoreline. Watching the sky as it moves through the gears of sunset: to the west where it glows hot and loud, fire red and orange. To the east where it is brushed with hushed colours. Goose grey, pistachio green and pale blue. Out on the nature reserve there is a 360 degree view of this sunset. It is stunning. And the nights are deeply dark. The millions of stars which are so crisp and clear, really do shine like diamonds in the sky. My caravan was a good move!
Two really great pieces of news: One is I have started my animation course. This is very exciting. First exercise was to cut out and make an articulated puppet. This was then filmed. I had an aardvark (of sorts) doing somersaults! Its a 30 week course, designed to teach a selection of animation techniques. I hope at some point to combine this with my printmaking. Anyway, I am a student again, one day a week (and flop-out-flat when I get home after an intense 10 hour day) and really enjoying myself. The second even-better-news is that I have managed to secure a new studio back in Havelock Walk. For those of you who know me, you will know that this is a major step forward, on all sorts of levels. I am thrilled that I have another studio space back in the street. This means I can start work again. This means too that my life is starting to feel like mine again. I am functioning without the constant support of hospital. Though I will never completely rid the medical ties that bind me. But hey, small price to pay for my life back and pretty much in once piece. Thanks to the amazing advances in modern medicine, the dedicated work of the Antony Nolan trust and our amazing National Health Service, I am still here today. High Five indeed!
On that affirmative note I am off to cook myself supper! Hope all is good for everyone, everywhere. Not happy times around the globe I know. Lets hope peace prevails. Will be drawing this blog to a close in the next couple of months. I hit two years since my transplant on December 11th - so probably a good time to wrap up and say goodbye. Until then, love, high fives etc etc
back soon, tch x
ps. LVG still got to make a miracle at Old Trafford.
pps. photos of my beach-side retreat
Tuesday, 19 August 2014
POST HOLIDAYS
Ciao Tutti,
Fresh back from a week in St Ives. It was brilliant. Sunshine and wild green surf. I swam, walked everyday, ate like a horse. Stepped in (and quickly out of) endless art galleries bulging with a selection of pretty dire work (St Ives has been done to death). Visited Barbara Hepworths' garden, The Tate, Bernard Leach pottery. Had cream tea in a beach cafe (delicious). Fish and chips and a bottle of white wine on the harbour front. Amanda sang sea shanties. Watched surfers ride and wrestle with waves. Saw a seal - no basking sharks unfortunately. Spied the super-moon as it rose over Hayle Beach (not as big as expected). Took an open-top bus ride to Sennon Cove and then walked across the cliffs to Lands End. On cue (i.e. just as I arrived), the rains swept in from the west - obliterating the Lands End light-house. But as quickly as they arrived, they blew away again. That was good - as I had the return journey to do. Was lovely to spend time with dear old friends and catch up with lost ones. We all laughed a lot. My bed and breakfast was a hit. If anyone reading this visits St Ives, stay at Coast B&B. You won't be disappointed. Say I sent you!
The break was over too quickly (extended my stay by 3 days) and now back home tending my garden, which despite hot red dahlias still blooming and some late geraniums, is looking tired and rather bedraggled. A bit of cutting and clipping required and general preparation as we head into autumn. Cant believe we are already at the back end of summer.
The caravan down at Rye Harbour is fantastic. Have already stayed a few nights there - though as I write this, the excitement of it has been a bit gazzumped by my holiday out west! However, it is going to be such a great space to disappear to, recharge batteries and get a good dose of sea air. I hope that it will kick start some creative ideas. Perhaps I will get a dog too... Aiming to go back again next week. Stuff to do to make it feel like home.
This is a short blog update - I got to get myself to the gym now. Bloods dropping a bit, so I have to go back next week for more tests. Fingers crossed.
Love to everyone round this tiny globe. Italy, (ciao Graziella), Hong Kong, Australia, USA, Ireland, UK et al. Hope summer / winter has been a good one for you all. Thanks for emails, texts and comments still coming in; it is always great to hear from you - even anonymous messages from school days! I am amazed at old friends who have got in touch with me through this blog and total strangers too. The wonders of technology. Greetings to you all.
Back soon. tch xx
PS: some holiday photos...
Fresh back from a week in St Ives. It was brilliant. Sunshine and wild green surf. I swam, walked everyday, ate like a horse. Stepped in (and quickly out of) endless art galleries bulging with a selection of pretty dire work (St Ives has been done to death). Visited Barbara Hepworths' garden, The Tate, Bernard Leach pottery. Had cream tea in a beach cafe (delicious). Fish and chips and a bottle of white wine on the harbour front. Amanda sang sea shanties. Watched surfers ride and wrestle with waves. Saw a seal - no basking sharks unfortunately. Spied the super-moon as it rose over Hayle Beach (not as big as expected). Took an open-top bus ride to Sennon Cove and then walked across the cliffs to Lands End. On cue (i.e. just as I arrived), the rains swept in from the west - obliterating the Lands End light-house. But as quickly as they arrived, they blew away again. That was good - as I had the return journey to do. Was lovely to spend time with dear old friends and catch up with lost ones. We all laughed a lot. My bed and breakfast was a hit. If anyone reading this visits St Ives, stay at Coast B&B. You won't be disappointed. Say I sent you!
The break was over too quickly (extended my stay by 3 days) and now back home tending my garden, which despite hot red dahlias still blooming and some late geraniums, is looking tired and rather bedraggled. A bit of cutting and clipping required and general preparation as we head into autumn. Cant believe we are already at the back end of summer.
The caravan down at Rye Harbour is fantastic. Have already stayed a few nights there - though as I write this, the excitement of it has been a bit gazzumped by my holiday out west! However, it is going to be such a great space to disappear to, recharge batteries and get a good dose of sea air. I hope that it will kick start some creative ideas. Perhaps I will get a dog too... Aiming to go back again next week. Stuff to do to make it feel like home.
This is a short blog update - I got to get myself to the gym now. Bloods dropping a bit, so I have to go back next week for more tests. Fingers crossed.
Love to everyone round this tiny globe. Italy, (ciao Graziella), Hong Kong, Australia, USA, Ireland, UK et al. Hope summer / winter has been a good one for you all. Thanks for emails, texts and comments still coming in; it is always great to hear from you - even anonymous messages from school days! I am amazed at old friends who have got in touch with me through this blog and total strangers too. The wonders of technology. Greetings to you all.
Back soon. tch xx
PS: some holiday photos...
 |
| ST IVES |
 |
| SURFERS ON PORTHMEOR BEACH |
 |
| POST SWIM! |
 |
| ST IVES WILD LIFE |
 |
| SURFING SUNDOWN |
 |
| SEA SHANTY EVENING |
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| LANDS END LIGHTHOUSE |
Thursday, 17 July 2014
TIME FLIES
Ciao Tutti!
oh dear - have received several emails over the last couple of days saying "No Blog! Whats up?" Yikes, its been almost seven weeks since I sat and bashed away at this keyboard. My apologies as usual. The days have just spun away - and I have been spinning with them.
First off, I am very pleased to write, no news is good news! My bloods are all stable and sitting in the normal zone. I am finally off those ghastly steroids. Face back to normal. Shakes gone. Phwee! I am also off the immunosuppressents, which means that I am "sailing solo" and so far so good. My new immune system hasn't turned on me (i.e. no GVHD). I am now only taking 5 pills a day - that is an easy swallow! Pill taking used to take me about 10 minutes - now I can throw them all back in one. Yes! My HOP visits are down to every five weeks, so my connection to the hospital is a lot less. However, weirdly it was quite a psychological struggle to wean myself off those clinic visits. Being frequently monitored was a real support. Now the spaces in-between visits are a lot longer, which gives the brain (mine in particular) time to fret and worry and wonder "whats going on inside?". There are still days when I have to talk to myself firmly and move on from the terror (I guess there will always be days like this from now on) - but my life is starting to take on a new healthier shape and rhythm. It feels like I am emerging from some terrible-tunnel-of-tangle. Each week my confidence grows and I am starting to really feel like my old self again. Oh, welcome home!
My tiny garden has been a joy this summer. An extravagance of colour and heady smells (honey suckle now replacing jasmine) bees, butterflies and two mice! The Battle of Snail is ongoing, but I am winning - although they did an amazing demolition of some dahlias the other night. The handsome ginger-ale tom cat that did nasty things to the Robins in the spring, has taken to visiting me daily. Being a bit of a sucker for a cat, I have sort of forgiven him. But I am aware his friendliness belies his true motives, which, I am sure are mouse one and two...
I drove down to Rye the other weekend to see my old friends Fred and Audrey. First long trip in the car - so it was a bit of a test for me. The next day I was completely whacked out - my battery life is still very short - it took me two days to recover. Forever my head will think I can do more than I physically can. It is very frustrating and a constant reminder of "things past". I am still having to learn how to pace myself so I can do normal things without collapsing in a heap. I am still going to the gym, though only twice a week now. On Monday I had a solid gristle-looking lump removed from my leg which required 7 stitches (frankenstien stitches at that) and strict instructions from the Doctor not to go near the gym for a week... Lump has been sent off for testing, but I am sure there is nothing sinister to it. However, given my history of strange lumps (which is how they discovered the leukaemia in the first place) - they are always cautious. Best to be, I guess.
In August I am off to St Ives for a few days. Seven hour train journey. Clackatie-clak; I love that sound. Will cross over the Dawlish line that the sea swallowed up in the February storms. Meeting Amanda down there and staying in a B&B run by an old friend who I originally met on a beach in Bali almost 30 years ago. Really looking forward to the break. Cornish sea air, cornish light, and no doubt, cornish cream.
My last bit of news is that I have just bought myself a static caravan down on Rye Harbour. Finally, I have my own place by the sea - for those of you that know me well, this is a dream I have nurtured for a good number of years. It is sited on a small caravan park, next to the River Rother and boundaries with the Rye Nature Reserve. A 15 minute walk through the reserve brings you onto a wide sweeping empty beach, with Camber Sands to the left and Hastings along the coast to the right. I am hoping this will be the start of something good - creatively at least. I will update on caravan and sea and big skies on my next blog. I am still waiting for the key...
It is a hot summer in London. Blue and lovely. Waiting for some rocking thunderstorms though. I hope wherever you all are summer is just as good. Hope too that everyone is healthy and happy and you are enjoying everything you are doing. Thanks for all your messages / emails etc. I am still amazed that this blog is still read. I will try and update a bit earlier next time (ha ha!). Love around the globe - north south east and west - a special hallo to my australian cousins who had lunch with me last week, but should be back in Sydney now - the turkish delight, fresh from Istanbul, was delicious!
Back soon, tch xxx
ps. World Cup: England's lions didn't even manage a snarl. So much for rumble in the jungle! Watched almost every match and was thoroughly footballed out by the time of the final last weekend. Guess the best team won. Though I was gunning for Columbia.
oh dear - have received several emails over the last couple of days saying "No Blog! Whats up?" Yikes, its been almost seven weeks since I sat and bashed away at this keyboard. My apologies as usual. The days have just spun away - and I have been spinning with them.
First off, I am very pleased to write, no news is good news! My bloods are all stable and sitting in the normal zone. I am finally off those ghastly steroids. Face back to normal. Shakes gone. Phwee! I am also off the immunosuppressents, which means that I am "sailing solo" and so far so good. My new immune system hasn't turned on me (i.e. no GVHD). I am now only taking 5 pills a day - that is an easy swallow! Pill taking used to take me about 10 minutes - now I can throw them all back in one. Yes! My HOP visits are down to every five weeks, so my connection to the hospital is a lot less. However, weirdly it was quite a psychological struggle to wean myself off those clinic visits. Being frequently monitored was a real support. Now the spaces in-between visits are a lot longer, which gives the brain (mine in particular) time to fret and worry and wonder "whats going on inside?". There are still days when I have to talk to myself firmly and move on from the terror (I guess there will always be days like this from now on) - but my life is starting to take on a new healthier shape and rhythm. It feels like I am emerging from some terrible-tunnel-of-tangle. Each week my confidence grows and I am starting to really feel like my old self again. Oh, welcome home!
My tiny garden has been a joy this summer. An extravagance of colour and heady smells (honey suckle now replacing jasmine) bees, butterflies and two mice! The Battle of Snail is ongoing, but I am winning - although they did an amazing demolition of some dahlias the other night. The handsome ginger-ale tom cat that did nasty things to the Robins in the spring, has taken to visiting me daily. Being a bit of a sucker for a cat, I have sort of forgiven him. But I am aware his friendliness belies his true motives, which, I am sure are mouse one and two...
I drove down to Rye the other weekend to see my old friends Fred and Audrey. First long trip in the car - so it was a bit of a test for me. The next day I was completely whacked out - my battery life is still very short - it took me two days to recover. Forever my head will think I can do more than I physically can. It is very frustrating and a constant reminder of "things past". I am still having to learn how to pace myself so I can do normal things without collapsing in a heap. I am still going to the gym, though only twice a week now. On Monday I had a solid gristle-looking lump removed from my leg which required 7 stitches (frankenstien stitches at that) and strict instructions from the Doctor not to go near the gym for a week... Lump has been sent off for testing, but I am sure there is nothing sinister to it. However, given my history of strange lumps (which is how they discovered the leukaemia in the first place) - they are always cautious. Best to be, I guess.
In August I am off to St Ives for a few days. Seven hour train journey. Clackatie-clak; I love that sound. Will cross over the Dawlish line that the sea swallowed up in the February storms. Meeting Amanda down there and staying in a B&B run by an old friend who I originally met on a beach in Bali almost 30 years ago. Really looking forward to the break. Cornish sea air, cornish light, and no doubt, cornish cream.
My last bit of news is that I have just bought myself a static caravan down on Rye Harbour. Finally, I have my own place by the sea - for those of you that know me well, this is a dream I have nurtured for a good number of years. It is sited on a small caravan park, next to the River Rother and boundaries with the Rye Nature Reserve. A 15 minute walk through the reserve brings you onto a wide sweeping empty beach, with Camber Sands to the left and Hastings along the coast to the right. I am hoping this will be the start of something good - creatively at least. I will update on caravan and sea and big skies on my next blog. I am still waiting for the key...
It is a hot summer in London. Blue and lovely. Waiting for some rocking thunderstorms though. I hope wherever you all are summer is just as good. Hope too that everyone is healthy and happy and you are enjoying everything you are doing. Thanks for all your messages / emails etc. I am still amazed that this blog is still read. I will try and update a bit earlier next time (ha ha!). Love around the globe - north south east and west - a special hallo to my australian cousins who had lunch with me last week, but should be back in Sydney now - the turkish delight, fresh from Istanbul, was delicious!
Back soon, tch xxx
ps. World Cup: England's lions didn't even manage a snarl. So much for rumble in the jungle! Watched almost every match and was thoroughly footballed out by the time of the final last weekend. Guess the best team won. Though I was gunning for Columbia.
Saturday, 24 May 2014
SUNSHINE AFTER THE RAIN
Ciao Tutti,
Cant believe its over a month since I last posted on here. My memory is a bit shot these days and I am sitting here wracking my brains trying to remember whats been going on...Good news is that my last visit to HOP Clinic in the beginning to May saw my BEST EVER blood results. Everything sitting comfortably in the mid range of normal. What joy to be normal! I was so thrilled I could have kissed my consultant. I bounced out of Kings and sang all the way home in the car, with the roof wide open. I put a lot of this down to my new exercise regime at the gym. Its really helped control my fatigue levels and given me more energy, made me more steady, helped me to sleep better and best of all I am starting to shake off all those hot cross buns and other goodies that I was eating too often. Trouble is I am too self-competitive. I initially started doing 20 minutes gentle work out - then it went up to half an hour and started to include push-me-pull-you weight things. Each day a little more, upping resistance levels on the cross trainer and bicycle and pushing heavier weights (don't be fooled, 18kgms max for me!) Suddenly I was doing an hours workout. I was dead chuffed with myself. But my bones-all-over started to scream 'enough'! My knee kicked up a big fuss. I found myself hobbling down the hill to the gym. All of me ached. So I stopped for 5 days. Have now resumed a less strenuous half hour. Clearly I still think I can do more than I actually can. Recovery is a damn slow process. But I'm getting there. Oh, and steroids down to 1mg. Almost finished!
Cut all my chemo curls off a few weeks ago. I don't really like short hair, but it was psychology an important step. Looking in the mirror was a daily reminder of the whole transplant process. Now they have all gone, whats left is mine! A bit circa 1983 (wish I felt circa 1983 too) but it will grow. Much darker than before. That is a result of chemo/radiotherapy. Enough of hair.
My garden is full on colour at the moment. Everything coming up roses (literally). I go out everyday with a mug of coffee and chatter away to lavender, jasmine, allium, poppy, clematis, potentilla et al (my neighbours are used to my eccentric ways). May has been a really good month for sunshine and rain and everything is blooming. Unfortunately so too are snails and slugs. They are a never-ending battle. All plants have had a regular diet of Miracle Grow this spring which has really helped with prolific flowering (perhaps its helped the slugs too - they are enormous). I open the garden doors and get a heady whiff of jasmine in the morning. Heaven. On gardening theme, went to Chelsea Flower Show yesterday with Lulu and Julian. First time ever. Bit disappointed - thought it would inspire me with ideas. Sadly not. Unable to walk though 'show gardens' - you have to stand behind a rope and stare along with heaps of others jostling with cameras and mobile phones... much better on the TV. The place was also heaving with a jumble of stalls selling really terrible garden sculptures (I mean, just appalling): giant sandstone horses, life-size wire elephants, huge pottery lions (it was a jungle fest), towering glass alliums, twee little owls and robins and pots and planters - the list is endless. Bought a new slinky green covered garden hose (no kinks, it promises!) but decided against a packet of crisps for £1.90. The large marquee had some stunning flowers - but I was knackered but the time we got in there. Iris, banks of sweet peas, roses, and some fantastic vegetable displays. Despite failure to inspire, was glad I went. Flat out exhausted by the time I got home - slept solidly for 9 hours. First time I have done that in 18 months!
I have started a print course over in Blackheath. One day a week, just to get me back into the groove of work and printmaking. Thats another big step forward. Also underlines how much I miss my studio. Am on the lookout for a new space, but nothing appearing. I know I will have to set up a mini-workshop in my garage. I tried to do some work on the kitchen table the other day. Nightmare. Ink everywhere. Rollers and frying pans don't really mix.
Another first this month was a train and tube journey (have not travelled on public transport since July 2012!). Amazing how something so simple one just 'did' without thinking about it, now becomes a hurdle to leap, a cross to tick off (can you do such a thing?) a goal achieved. It was exhausting, but manageable. The Chilterns looked beautiful under blue skies and big Mr. Whippy clouds. Next on my list is a two hour drive down to Rye. I hope by next post that will be another tick to cross off.
Some of you have been asking about Luigi. I know I have not written about him for an age. Which is sad. I have not seen him since October - and miss him big time (but have got my independence back!) We are in regular, almost daily contact by phone. He has had a mountain of work problems. Moved from Venice to Milan. Looking for a new gallery. Been ill. Been ill some more. I am keeping my fingers crossed that he will be over during the summer. Its almost two years ago that I went out to meet him in Venice, just before my treatment started. I wouldn't mind to be on a vaporetta right now, splashing over the Guidecca canal, off to have lunch with my dear friends Paolo and Marina on their roof top terrace... One day.
Va bene. Hope everyone is good. As usual, thanks for all your supportive messages. There was open studios at Havelock Walk last weekend. I met a number of people whom I had no idea have been following this blog regularly. So to you all, a big hallo and thanks for your continuing interest and support on this road to recovery. I am really touched. And to other unknowns around the globe, thank you too for taking the time to read. Australian cousins - see you soon! Donegal, Wales, America, Italy, Singapore, HK, SA, UK - high fives and warm summer lovin' to you all. Back soon. tch x (oh, and World Cup just round the corner - whoopee!)
photos of garden and hair cut...
Cant believe its over a month since I last posted on here. My memory is a bit shot these days and I am sitting here wracking my brains trying to remember whats been going on...Good news is that my last visit to HOP Clinic in the beginning to May saw my BEST EVER blood results. Everything sitting comfortably in the mid range of normal. What joy to be normal! I was so thrilled I could have kissed my consultant. I bounced out of Kings and sang all the way home in the car, with the roof wide open. I put a lot of this down to my new exercise regime at the gym. Its really helped control my fatigue levels and given me more energy, made me more steady, helped me to sleep better and best of all I am starting to shake off all those hot cross buns and other goodies that I was eating too often. Trouble is I am too self-competitive. I initially started doing 20 minutes gentle work out - then it went up to half an hour and started to include push-me-pull-you weight things. Each day a little more, upping resistance levels on the cross trainer and bicycle and pushing heavier weights (don't be fooled, 18kgms max for me!) Suddenly I was doing an hours workout. I was dead chuffed with myself. But my bones-all-over started to scream 'enough'! My knee kicked up a big fuss. I found myself hobbling down the hill to the gym. All of me ached. So I stopped for 5 days. Have now resumed a less strenuous half hour. Clearly I still think I can do more than I actually can. Recovery is a damn slow process. But I'm getting there. Oh, and steroids down to 1mg. Almost finished!
Cut all my chemo curls off a few weeks ago. I don't really like short hair, but it was psychology an important step. Looking in the mirror was a daily reminder of the whole transplant process. Now they have all gone, whats left is mine! A bit circa 1983 (wish I felt circa 1983 too) but it will grow. Much darker than before. That is a result of chemo/radiotherapy. Enough of hair.
My garden is full on colour at the moment. Everything coming up roses (literally). I go out everyday with a mug of coffee and chatter away to lavender, jasmine, allium, poppy, clematis, potentilla et al (my neighbours are used to my eccentric ways). May has been a really good month for sunshine and rain and everything is blooming. Unfortunately so too are snails and slugs. They are a never-ending battle. All plants have had a regular diet of Miracle Grow this spring which has really helped with prolific flowering (perhaps its helped the slugs too - they are enormous). I open the garden doors and get a heady whiff of jasmine in the morning. Heaven. On gardening theme, went to Chelsea Flower Show yesterday with Lulu and Julian. First time ever. Bit disappointed - thought it would inspire me with ideas. Sadly not. Unable to walk though 'show gardens' - you have to stand behind a rope and stare along with heaps of others jostling with cameras and mobile phones... much better on the TV. The place was also heaving with a jumble of stalls selling really terrible garden sculptures (I mean, just appalling): giant sandstone horses, life-size wire elephants, huge pottery lions (it was a jungle fest), towering glass alliums, twee little owls and robins and pots and planters - the list is endless. Bought a new slinky green covered garden hose (no kinks, it promises!) but decided against a packet of crisps for £1.90. The large marquee had some stunning flowers - but I was knackered but the time we got in there. Iris, banks of sweet peas, roses, and some fantastic vegetable displays. Despite failure to inspire, was glad I went. Flat out exhausted by the time I got home - slept solidly for 9 hours. First time I have done that in 18 months!
I have started a print course over in Blackheath. One day a week, just to get me back into the groove of work and printmaking. Thats another big step forward. Also underlines how much I miss my studio. Am on the lookout for a new space, but nothing appearing. I know I will have to set up a mini-workshop in my garage. I tried to do some work on the kitchen table the other day. Nightmare. Ink everywhere. Rollers and frying pans don't really mix.
Another first this month was a train and tube journey (have not travelled on public transport since July 2012!). Amazing how something so simple one just 'did' without thinking about it, now becomes a hurdle to leap, a cross to tick off (can you do such a thing?) a goal achieved. It was exhausting, but manageable. The Chilterns looked beautiful under blue skies and big Mr. Whippy clouds. Next on my list is a two hour drive down to Rye. I hope by next post that will be another tick to cross off.
Some of you have been asking about Luigi. I know I have not written about him for an age. Which is sad. I have not seen him since October - and miss him big time (but have got my independence back!) We are in regular, almost daily contact by phone. He has had a mountain of work problems. Moved from Venice to Milan. Looking for a new gallery. Been ill. Been ill some more. I am keeping my fingers crossed that he will be over during the summer. Its almost two years ago that I went out to meet him in Venice, just before my treatment started. I wouldn't mind to be on a vaporetta right now, splashing over the Guidecca canal, off to have lunch with my dear friends Paolo and Marina on their roof top terrace... One day.
Va bene. Hope everyone is good. As usual, thanks for all your supportive messages. There was open studios at Havelock Walk last weekend. I met a number of people whom I had no idea have been following this blog regularly. So to you all, a big hallo and thanks for your continuing interest and support on this road to recovery. I am really touched. And to other unknowns around the globe, thank you too for taking the time to read. Australian cousins - see you soon! Donegal, Wales, America, Italy, Singapore, HK, SA, UK - high fives and warm summer lovin' to you all. Back soon. tch x (oh, and World Cup just round the corner - whoopee!)
photos of garden and hair cut...
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| Grassmount garden |
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| garden detail |
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| lilly |
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| rose |
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| cistus |
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| gerbera (on the way out) |
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| before |
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| after |
Saturday, 19 April 2014
EASTER 2014
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Ciao Tutti
Quick-flick easter blog to say Happy Easter round the globe. Hope you all having a great time, wherever you are. Don't eat too much chocolate. Weather got cold again, so my easter "working in the garden" plan is currently put on hold. Instead central heating is on and I hope there will be a decent film or two on tv...
I have finally signed up to the local gym in Forest Hill. Need to build my stamina and muscle tone (plus need to loose some weight!). Nothing too strenuous to start with, twenty minutes on the cross trainer and bicycle-pedal-thingy. Brings on a small sweat. Will try for 25 minutes next week... I feel very out of place there, as it is heaving with young fit mostly males, rippling torsos and muscles. Lots of loud music and sweat. I wander in looking like an old bag lady (it seems) - and climb gingerly onto these huge machines (terrified of falling off the cross trainer) and start to slowly push push push with my hopelessly soft calf muscles. You have to dial in a "resistance factor". I notice the tight-t-shirted guy next to me is working with a resistance factor of 19. Mine is 4. Blimey, I have some work to do! There is a middle aged man on the running machine. He is really going for it. Thump thump thump - his feet hit the speeding running belt. He is boiled lobster colour - and soaking wet. I wonder if he will have a heart attack. My time is up, I swig some cold water, and walk out clutching my sainsburys shopping bag. Off to buy coffee. And then home for a hot-cross bun in the garden. Possibly defeats the object. But hey - at least I am going to the gym!
All good blood wise. I am now going monthly to the HOP (!) which is a big step forward. Next visit in the beginning of May. They gave me some blood pressure tablets which have made my head itch to distraction. So stopped taking them yesterday. Tired of endless medications and rotten side effects. Steroids down to 2mg, so face almost back to normal! Now I am being weaned off my immuno suppressants too. Once I am finished with all those, I will then be revaccinated with all my childhood vaccinations, which is quite a bizarre thought.
Sad news to report is that my resident robins where the victims of a cat attack. One morning the garden was full of mad tweeting. First the robins, then the tits joined in and finally a magpie too. A cacophony of bird chatter. It was clear something was amiss and I went out and banged the fence and made lots of shooing noises. Then I saw him, a handsome ginger-ale-tom stalk boldly out of my next door neighbours garden. He glared at me and then wandered off nonchalantly into the spring sunshine. Meantime Robins were in a terribly twittering state. They had lost their nest (not sure if it had eggs or chicks inside). They flew away that day. I haven't seen them since. They have been hanging round the garden for years. I hope they return. I miss my garden companions.
Ok. Short and sweet this entry. Hope everyone good, healthy and happy. Thanks for all messages from everywhere. Love to everyone, family, friends and unknown blog readers - and for no reason at all, other than I have just thought of it, a special hallo to all the Somerset posse. I hope later this year to take a trip down the A303. Lots of you to visit... BUON PASQUA TUTTI! Back soon tch xx
ps London spring is fantastic. Clean-green trees against blue-blue sky. Everything bursting into colour. What a buzz. Brilliant and beautiful.
Thursday, 27 March 2014
MARCHING ON
Wow - March is marching on so fast it's almost April! And this blog update is horribly late. My usual apologies. I know some of you loyal readers get a bit concerned when there is a long silence. But this time it's just because I have been busy in my spring garden, starting up some artwork and generally rebuilding my normal life style routine.
I did have a bit of a scare with my throat which wouldn't get better (bad since January) and made me feel pretty miserable. Two weeks ago I found myself at Guys Hospital talking to a head and neck cancer specialist. He did a third endoscopy ( I can stay pretty still now - I have gotten used to a camera being poked up my nose and wiggling down my throat) and after a thorough look announced that all was good and there was nothing sinister going on. I was mightily relieved to hear this. Most likely, he reckoned, the painful throat was as a result of all my medications. He prescribed me some more (!) to try and counteract the thrush which has invaded my mouth. These seem to have worked; at least my throat has completely cleared up. Finally.
I had brilliant blood results for a month - everything sitting comfortably in the middle of the normal range. Cannot tell you how fantastic that feels. I walk out of Kings sky high when I get good results. I have a huge grin on my face and thank all the gods everywhere. However last week, neutrophils and whites had both dropped just below normal. Consultant reckoned it was because of reduction of steroids (slow tapering still in force) and wasn't too concerned. Sets off usual panic in me though. I have to talk to myself very firmly. And then just get on with life. The only physical struggle I have to deal with daily is enormous fatigue. I have to really manage my days so I don't get knocked for six. Too much 'output' and I feel like I have been hit by a steam train. I think this is also due to the reduction of steroids, which can produce a sense of 'well being' and energy. Now I am down to 3mgs a day, things feel much tougher. 'Withdrawal symptoms' I am told!
We had a sniff of spring a short while ago...The garden started to stretch and sprout. Green shoots and buds everywhere. I made at least three trips to the garden centre, coming home with my arms wrapped round boxes of instant colour (pansies and anenomies) and some more substantial stuff including a honey suckle which I have put out the front. Coffee in the garden, sitting on Mums wooden bench. Watch the robins nest building. Get furious with the squirrels who are frantically digging holes in all my pots looking for, or burying, nuts. The wood mouse has disappeared. But a large black and white cat has been a regular visitor...
Finally made it out of London for the day too. It's been sixteen months since I have left this city. Had a fantastic trip to Deal (Lulu, Julian, Jan and Gerald). Blue skies and warm sunshine. Fish and chips (just delicious), sat on the beach building miniture stone sculptures, walked along the pier. Listened to sploshing waves and screeching seagulls. Watched a single white balloon float high into the blue. Woolley pigs (they really do exist). Tea and huge slices of homemade cake at St Margaret's Bay. Lots of laughing. On the way home we spied the moon from the back window of the car, low on the horizon - full, fat and buttery yellow. So big, you could almost reach out and slip it in your pocket.
Now the cold has returned! The central heating is turned up and every morning I fuss round the garden to check the plants are ok. They say it'll be warm again this weekend. Yes please!
For those of you in the know, Man United's season is a disaster. I wonder if David Moyes will still be in the driving seat by the time I write my next blog? And the World Cup is just around the corner.. I find this really quite hard to grasp. Last World Cup, in 2010, I was writing my first blog (from Guys hospital) Badhairday, having been diagnosed with AML for the first time. Blimey! That was four years ago. Its been quite some journey... England in the jungle should be quite some trip too! I love our World Cup song.
Time to cook myself some supper. Hope everyone is wise and well. Spring almost here, well, dancing in and out. Summer next. Life rolling on. Feels good. Greetings round the globe. Keep safe. And thanks for all your messages, still! You are all brilliant! Love and high fives. Back soon tch x
PS / just added a few photos...
Time to cook myself some supper. Hope everyone is wise and well. Spring almost here, well, dancing in and out. Summer next. Life rolling on. Feels good. Greetings round the globe. Keep safe. And thanks for all your messages, still! You are all brilliant! Love and high fives. Back soon tch x
PS / just added a few photos...
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| another selfie! |
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| Luisa and Julian |
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| Gerald and Janice |
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| Deal Pier |
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| Deal Pier and lots of sunshine |
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| Parakeets in my garden! |
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| Breakfast |
Friday, 21 February 2014
BLUE LIGHTS
Ciao Tutti!
Been an eventful few weeks since my last update…
Soon after my birthday I got sick. Woke one night in the silent early hours and started to throw up. Endlessly. Then started to get a fever which climbed and climbed until my thermometer hit 40 degrees. I called an ambulance. Was blue lighted down to Kings and wheeled in to A&E. Arrived about 4am. Was immediately dripped up with fluids, antibiotics, anti-sickness, paracetamol. No hickman line, so had cannulars stuck into every vein it seemed (actually, it was two, but it seemed more with all the poking and prodding that went on - my veins are hard to get into). My blood pressure was very high, so I had wires stuck all over me and hooked up to a heart monitoring machine - lots of bleeping and numbers flashing up and down. Urgent blood tests revealed that my neutrophils and white count had fallen though the roof (after being good only 24 hours earlier) signifying infection. I was put into an isolation room accompanied by monitors and drips. Lulu was her usual wonder-woman-self and appeared half way through the day with a bag from home, a bottle of ginger beer and my hot-pink duvet. The haematology team arrived in force and clucked around me like wonderful mother hens. I remained in A&E till 5pm and then was wheeled up to Davidson Ward.
And then the usual routine began: 6 days of intravenous antibiotics, X-rays, scans, daily weighing, hideous food, lots of visitors (thanks my south and north london teams, you were great). My throat that had been troubling me since early January was still very painful and causing me some distress. I had to endure a very uncomfortable endoscopy one afternoon. They discovered a small ulcer type lesion at the back of my tongue - so I was sent off for a full head and neck MRI scan. I managed to get myself completely wound up that I had some kind of mouth cancer. It is so easy to fall into the trap of worse-case-scenario. A sore throat that won't clear up, a lesion on my tongue, ear ache - all ingredients that could add up to something very sinister. And in my fragile state, it did. Talk about being my own worst enemy! However, a week later got result of scan and it was confirmed that nothing could be seen and all was ok. Though, as a little aside, I still have a painful tongue - despite endless gargling and mouth sprays and whatever. Food has become a problem again, partly because it is difficult to eat and also everything tastes foul and leaves a horrible after-taste in my mouth. Some stuff I just can't eat anymore - mostly dairy based things. I am being sent off for allergy tests in a few weeks time. Apparently it is quite common after cord blood transplant to develop food allergies.
I was kept in for a week while I finished a strong course of intravenous antibiotics. Got home - life picked up where it had left off - gardening, walking, sainsburys, friends for tea etc (I really need to expand on my daily routine). Was back for four days and then blow-me-down, the whole thing happened again! Exactly the same. Throwing up. Fever. Ambulance (took 2 hours to arrive, so must write to London Ambulance Service to complain). A&E. Dive-bombing blood counts. Cannulars poked into my veins (oh, ouch!) Hooked up to drips. Intravenous antibiotics. This time I was put onto Waddington Ward. Waddington Ward is good. It has windows with-a-view. I got to see sky and moon and clouds and planes on their way to Heathrow. Consultant visits me and throws his eyes to heaven, "You again!" I tell him my theory that maybe I am allergic to avocado pears - as on both occasions I had eaten them a few hours before getting sick. He is interested in this, though, as he points out, it doesn't account for the fevers that accompany the sickness. After 48 hours he says I can go home with a course of oral antibiotics. I say "No more antibiotics please, my body is sick of medications" He seems happy with this and I skip out of the hospital dressed only in my polka-dot-blue dressing gown and polka-dot blue slippers. Skip, of course is an exaggeration - however, I did get out of there as fast as I could wheel my bag-of-bits down the long shiny-clean corridors. And I did only have my dressing gown and slippers to travel in. I think the taxi man was a bit taken aback when he spied me standing on the steps complete with white face-mask…
I have now been home for ten days. Apart from my tongue and limited diet, all is well. At clinic on Tuesday my bloods counts were the best they have been since before the transplant. Everything hitting normal levels. Cannot tell you what a brilliant feeling that is. My baby cells doing their thing and doing it well. Keep it up guys. I love you to bits.
The garden is starting to reveal signs of spring - daffodils starting to shoot up - early clematis starting to produce bright green shoots. Have done some severe pruning - passion flower, lavender, clematis, rose. Wendy coming over this weekend for a sort-the-garden afternoon. Have alliums to plant. A young pair of robins are regular visitors along with squirrels, blue tits and blackbirds. Oh, and a new baby wood mouse appeared the other day scuttling amongst the flower pots. Things are moving on. I am starting to think about work again and have been playing around with some simple animation apps on my iPad. So wish I still had my studio to return to. I feel ready to start again, but have nowhere to go to. I will have to set up a temporary space in my garage. And thats going to take some sorting! Its mountain high with stuff from Havelock Walk…
Enough now, I need to make myself some spinach soup. Hope everyone has remained dry over these last few stormy weeks. Wish I could have witnessed some of those Atlantic seas though - wild and exhilarating. Especially thinking of all of you down in Somerset. Fingers crossed this mild weather is here to stay for a while. But I wonder if we have a deep siberian blast coming our way? Take care wherever you are - north south east or west - all around the globe. Love to all and everyone.
Back soon tch xx
Been an eventful few weeks since my last update…
Soon after my birthday I got sick. Woke one night in the silent early hours and started to throw up. Endlessly. Then started to get a fever which climbed and climbed until my thermometer hit 40 degrees. I called an ambulance. Was blue lighted down to Kings and wheeled in to A&E. Arrived about 4am. Was immediately dripped up with fluids, antibiotics, anti-sickness, paracetamol. No hickman line, so had cannulars stuck into every vein it seemed (actually, it was two, but it seemed more with all the poking and prodding that went on - my veins are hard to get into). My blood pressure was very high, so I had wires stuck all over me and hooked up to a heart monitoring machine - lots of bleeping and numbers flashing up and down. Urgent blood tests revealed that my neutrophils and white count had fallen though the roof (after being good only 24 hours earlier) signifying infection. I was put into an isolation room accompanied by monitors and drips. Lulu was her usual wonder-woman-self and appeared half way through the day with a bag from home, a bottle of ginger beer and my hot-pink duvet. The haematology team arrived in force and clucked around me like wonderful mother hens. I remained in A&E till 5pm and then was wheeled up to Davidson Ward.
And then the usual routine began: 6 days of intravenous antibiotics, X-rays, scans, daily weighing, hideous food, lots of visitors (thanks my south and north london teams, you were great). My throat that had been troubling me since early January was still very painful and causing me some distress. I had to endure a very uncomfortable endoscopy one afternoon. They discovered a small ulcer type lesion at the back of my tongue - so I was sent off for a full head and neck MRI scan. I managed to get myself completely wound up that I had some kind of mouth cancer. It is so easy to fall into the trap of worse-case-scenario. A sore throat that won't clear up, a lesion on my tongue, ear ache - all ingredients that could add up to something very sinister. And in my fragile state, it did. Talk about being my own worst enemy! However, a week later got result of scan and it was confirmed that nothing could be seen and all was ok. Though, as a little aside, I still have a painful tongue - despite endless gargling and mouth sprays and whatever. Food has become a problem again, partly because it is difficult to eat and also everything tastes foul and leaves a horrible after-taste in my mouth. Some stuff I just can't eat anymore - mostly dairy based things. I am being sent off for allergy tests in a few weeks time. Apparently it is quite common after cord blood transplant to develop food allergies.
I was kept in for a week while I finished a strong course of intravenous antibiotics. Got home - life picked up where it had left off - gardening, walking, sainsburys, friends for tea etc (I really need to expand on my daily routine). Was back for four days and then blow-me-down, the whole thing happened again! Exactly the same. Throwing up. Fever. Ambulance (took 2 hours to arrive, so must write to London Ambulance Service to complain). A&E. Dive-bombing blood counts. Cannulars poked into my veins (oh, ouch!) Hooked up to drips. Intravenous antibiotics. This time I was put onto Waddington Ward. Waddington Ward is good. It has windows with-a-view. I got to see sky and moon and clouds and planes on their way to Heathrow. Consultant visits me and throws his eyes to heaven, "You again!" I tell him my theory that maybe I am allergic to avocado pears - as on both occasions I had eaten them a few hours before getting sick. He is interested in this, though, as he points out, it doesn't account for the fevers that accompany the sickness. After 48 hours he says I can go home with a course of oral antibiotics. I say "No more antibiotics please, my body is sick of medications" He seems happy with this and I skip out of the hospital dressed only in my polka-dot-blue dressing gown and polka-dot blue slippers. Skip, of course is an exaggeration - however, I did get out of there as fast as I could wheel my bag-of-bits down the long shiny-clean corridors. And I did only have my dressing gown and slippers to travel in. I think the taxi man was a bit taken aback when he spied me standing on the steps complete with white face-mask…
I have now been home for ten days. Apart from my tongue and limited diet, all is well. At clinic on Tuesday my bloods counts were the best they have been since before the transplant. Everything hitting normal levels. Cannot tell you what a brilliant feeling that is. My baby cells doing their thing and doing it well. Keep it up guys. I love you to bits.
The garden is starting to reveal signs of spring - daffodils starting to shoot up - early clematis starting to produce bright green shoots. Have done some severe pruning - passion flower, lavender, clematis, rose. Wendy coming over this weekend for a sort-the-garden afternoon. Have alliums to plant. A young pair of robins are regular visitors along with squirrels, blue tits and blackbirds. Oh, and a new baby wood mouse appeared the other day scuttling amongst the flower pots. Things are moving on. I am starting to think about work again and have been playing around with some simple animation apps on my iPad. So wish I still had my studio to return to. I feel ready to start again, but have nowhere to go to. I will have to set up a temporary space in my garage. And thats going to take some sorting! Its mountain high with stuff from Havelock Walk…
Enough now, I need to make myself some spinach soup. Hope everyone has remained dry over these last few stormy weeks. Wish I could have witnessed some of those Atlantic seas though - wild and exhilarating. Especially thinking of all of you down in Somerset. Fingers crossed this mild weather is here to stay for a while. But I wonder if we have a deep siberian blast coming our way? Take care wherever you are - north south east or west - all around the globe. Love to all and everyone.
Back soon tch xx
Thursday, 23 January 2014
BIRTHDAY!
Ciao Tutti!
Today I am 56!
Yikes, that feels old! but I am still here to celebrate. It feels like quite an achievement!
Brothers x 2 came round for tea and fat chocolate cake (with candles) and a mini rendition of
Happy Birthday to You. I am very happy! I am alive and kicking (unlike Man Utd…)
Laid low this week (still laying) with nasty throat infection. On antibiotics. My baby stem cells clearly having a hard time trying to get rid of infection. So I am treating them very tenderly. Bloods are down a bit, but to be expected with infection nagging away at my tonsils.
Last night I lay in bed and watched the moon steal across the sky (looking like a large chunk of half stilton). There was Jupiter too. Incredibly bright. I was full of thoughts. Awake till 2am (exhausted now).
Quick blog this - basically for a bit of blatant self publicity and to say thanks to all of you for the stream of texts, emails, phone calls, birthday cards and presents that have been bouncing in all day. It was great to hear from you all. What bunch of brilliant friends.
Below is a birthday photo, taken just now. Hair is back big time! Also a"selfie" with me and my brothers. Will write another blog soon with a catch up. Though nothing much has changed - weekly visits to HOP for blood tests. Scan on my eyes which are being troublesome. The usual list. And my medication consumption still hasn't reduced - apart from having a lower dosage of steroids.
bIg hug to everyone. Back soon tch xx
Today I am 56!
Yikes, that feels old! but I am still here to celebrate. It feels like quite an achievement!
Brothers x 2 came round for tea and fat chocolate cake (with candles) and a mini rendition of
Happy Birthday to You. I am very happy! I am alive and kicking (unlike Man Utd…)
Laid low this week (still laying) with nasty throat infection. On antibiotics. My baby stem cells clearly having a hard time trying to get rid of infection. So I am treating them very tenderly. Bloods are down a bit, but to be expected with infection nagging away at my tonsils.
Last night I lay in bed and watched the moon steal across the sky (looking like a large chunk of half stilton). There was Jupiter too. Incredibly bright. I was full of thoughts. Awake till 2am (exhausted now).
Quick blog this - basically for a bit of blatant self publicity and to say thanks to all of you for the stream of texts, emails, phone calls, birthday cards and presents that have been bouncing in all day. It was great to hear from you all. What bunch of brilliant friends.
Below is a birthday photo, taken just now. Hair is back big time! Also a"selfie" with me and my brothers. Will write another blog soon with a catch up. Though nothing much has changed - weekly visits to HOP for blood tests. Scan on my eyes which are being troublesome. The usual list. And my medication consumption still hasn't reduced - apart from having a lower dosage of steroids.
bIg hug to everyone. Back soon tch xx
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Tuesday, 24 December 2013
JINGLE BELLS
Hi All,
late late xmas eve blog update - to wish everyone who reads this a very happy christmas time. Full of santa goodies and sparkle. Hope a bit of calm is descending upon you after these last few weeks of mayhem…and hope christmas storms have not knocked out electricity etc. What a wild night it was last night.
Here is my christmas cheer: had a bone marrow biopsy done two weeks ago (exactly a year on from my transplant, 11th December 2012) and yesterday got the news that all is fine and bone marrow working and no sign of leukaemia! This is the best christmas present I have ever had (even better than my Hornby train set circa 1962). Had spent a very anxious two weeks waiting for the result convinced that everything had gone pear shaped. I could have kissed the consultant yesterday. Instead I shed a quiet festive tear; then drove down to sainsburys to buy some crackers. When I think about this time last year, holed up in that tiny room, tied to a drip (with tinsel tangling off it) and staring out at a brick wall. It is so very special to still be here. It feels so brilliant to be alive (and walking up the hill). Not been an easy year but I hope 2014 will be healthier all round. Still another 12 months to go before my immune system in fully recovered and working normally - so more journeying ahead. Fingers crossed it will be easier than 2013. Haemoglobin recovered and back to normal, steroids being reduced slowly. Platelets had been dropping for some unknown reason, but they too have turned a corner and on the up. Whoopeee.
My saddest holiday news is Luigi has gastric flu and holed up in Italy. So no festive pampering for me. Have not seen him since October. Ouch! that is a long time. Hope he recovers in time to get here for new year. Celebrations go on nevertheless. Tonight Mel and the boys are coming round for risotto and rummikub. Candles and crackers all over a bright red table. My xmas tree has decided to lean precariously to the right, and I can't move it without risking half the stuff falling off plus a face full of pine needles. So lean it must. Tomorrow I am joining Lulu and Julian and their extended family for turkey and trimmings plus more crackers. Then home to watch my new hd smart tv - which has an amazing sound system attached to it, courtesy of my brother Adrian. Sounds incredible. A new watching and listening experience!
Ok time to go cook. Hope everyone is well. A huge thanks to you all for all your amazing support, blog-comments, texts, emails, snail mail, visits, phone calls etc over the year. You have all been a huge support to me which has really helped in my recovery and kept me going, especially through the tough times. Love and christmas wishes right round the globe: cousins in Australia, nephews in Honk Kong and South Africa and New Zealand, friends in Italy, USA (snowy Cleveland) Letterkenny (big time windy I bet). And all those closer to home, Somerset, Sheffield, Norfolk, Oxford, Hythe, Harlow, Brighton, Whistable, Wales, and all North and South London contingents (the most fantastic bunch of friends). To strangers too, who I know read this blog. And anyone else I may have missed out. In the words of Tiny Tim, "God bless us, everyone."
See you in the New Year. tch xxx
Whooshing into christmas
late late xmas eve blog update - to wish everyone who reads this a very happy christmas time. Full of santa goodies and sparkle. Hope a bit of calm is descending upon you after these last few weeks of mayhem…and hope christmas storms have not knocked out electricity etc. What a wild night it was last night.
Here is my christmas cheer: had a bone marrow biopsy done two weeks ago (exactly a year on from my transplant, 11th December 2012) and yesterday got the news that all is fine and bone marrow working and no sign of leukaemia! This is the best christmas present I have ever had (even better than my Hornby train set circa 1962). Had spent a very anxious two weeks waiting for the result convinced that everything had gone pear shaped. I could have kissed the consultant yesterday. Instead I shed a quiet festive tear; then drove down to sainsburys to buy some crackers. When I think about this time last year, holed up in that tiny room, tied to a drip (with tinsel tangling off it) and staring out at a brick wall. It is so very special to still be here. It feels so brilliant to be alive (and walking up the hill). Not been an easy year but I hope 2014 will be healthier all round. Still another 12 months to go before my immune system in fully recovered and working normally - so more journeying ahead. Fingers crossed it will be easier than 2013. Haemoglobin recovered and back to normal, steroids being reduced slowly. Platelets had been dropping for some unknown reason, but they too have turned a corner and on the up. Whoopeee.
My saddest holiday news is Luigi has gastric flu and holed up in Italy. So no festive pampering for me. Have not seen him since October. Ouch! that is a long time. Hope he recovers in time to get here for new year. Celebrations go on nevertheless. Tonight Mel and the boys are coming round for risotto and rummikub. Candles and crackers all over a bright red table. My xmas tree has decided to lean precariously to the right, and I can't move it without risking half the stuff falling off plus a face full of pine needles. So lean it must. Tomorrow I am joining Lulu and Julian and their extended family for turkey and trimmings plus more crackers. Then home to watch my new hd smart tv - which has an amazing sound system attached to it, courtesy of my brother Adrian. Sounds incredible. A new watching and listening experience!
Ok time to go cook. Hope everyone is well. A huge thanks to you all for all your amazing support, blog-comments, texts, emails, snail mail, visits, phone calls etc over the year. You have all been a huge support to me which has really helped in my recovery and kept me going, especially through the tough times. Love and christmas wishes right round the globe: cousins in Australia, nephews in Honk Kong and South Africa and New Zealand, friends in Italy, USA (snowy Cleveland) Letterkenny (big time windy I bet). And all those closer to home, Somerset, Sheffield, Norfolk, Oxford, Hythe, Harlow, Brighton, Whistable, Wales, and all North and South London contingents (the most fantastic bunch of friends). To strangers too, who I know read this blog. And anyone else I may have missed out. In the words of Tiny Tim, "God bless us, everyone."
See you in the New Year. tch xxx
Whooshing into christmas
Saturday, 30 November 2013
STILL NOVEMBER
Ciao Tutti!
Over a month since I sat down to write this blog. Needs some updating. Cant remember too much what has happened during the first part of November. Things were going well. I was down to a visit every two weeks at the HOP clinic. Drove myself to hospital so saved a fortune on taxis. My blue badge arrived so made parking a whizz. Visited Tate Modern and parked right outside. What a treat! Regular shopping at Sainsbury's. Managed to walk up to Horniman Gardens from the house. Great. Planted daffodils for the spring and chopped back the last of the lavender. Garden all umbers, reds and yellows now; only fushia still flowering. Has clambered everywhere and looks great, all twisted and tangled and full of red and purple bells (thin variety). Birds busy on the feeder. Had a parakeet hanging off it the other day too. Local cats suddenly got wind of all my feathered friends and are starting to stroll round the garden too often. I am shooing them away. Am I turning into a mad woman I wonder?
So all was going fine and dandy. Bloods where stabilising and I was starting to feel a whole lot better. My steroids were being reduced, my tremors where getting less. My taste was coming back. My face was thinning down. Then last week the hospital decided to give me an infusion of immunoglobulins (part of the immune system, immunoglobulins help to identify and neutralise bacteria and viruses). Apparently mine were very low - so it was a precautionary measure as we head into winter. It took two long visits to the HOP Clinic to infuse me with 7 bottles of the stuff. The day after it had finished I woke at midnight with a screaming headache and high temperature. That went on all night. My brain was falling out. I felt so ill. The following morning I got an ambulance down to A&E at Kings and eventually ended up on a bed back at the HOP clinic. I was told my symptoms were a reaction to the transfusion, given paracetamol and antibiotics to fight off any infection that might be brewing. A routine blood test also showed my haemoglobin had dropped quite a lot. I queried this with the doctor on duty, but was told it was normal.
Got home, swallowed all the pills. Didn't want to eat anything. Watched my temperature spike. Slept. Friday morning was feeling a bit better, so drove to pick up new glasses from Specsavers…stayed the rest of the day pretty much on the sofa. On Saturday my temperature was still a bit high. I looked yellow. My breathing had deteriorated. Walking up and down the stairs suddenly became very hard work and took ages. Sunday was even worse. Breathing more difficult, even harder climbing the stairs, dizzy and pale. I read the side effects of the antibiotics I was being given and decided that they were possibly causing the problem. "can effect red blood cells, causing breathlessness, yellowing of eyes and skin, dizziness". Eventually called Kings to ask if I could stop taking the antibiotics. The registrar wanted me to go into the hospital immediately. Not what I had bargained for. Was very reticent but figured it was better to be safe than sorry. So Mel took me in. A dark windy Sunday evening. What utter misery. Suddenly I was being pushed in a wheel chair down the long corridor of Davidson Ward and into Room 5. The memory of everything - blue uniformed nurses, smell, food, bleeping monitors etc, came flooding back in one big whoosh. This was so not what I ever wanted to experience again. I held my breath and shut my eyes for the night. Though didn't get much sleep. It was a crazy few hours, full of blood tests, doctors calling into see me at 2am, calcium drips.
In the morning I was told I had a haemoglobin level of 65 (baseline is 115) and therefore needed a lot of blood fast. Due to the continuing violent headaches it was also decided I needed a brain scan and possibly a lumbar puncture. Oh dear, it was all coming thick and fast. Wheeled here and there. Shunted through CT scanners, more bloods taken (no hickman line anymore, so everything in and out of me goes via a needle and canular, bloody painful too). chest X-ray. The new blood eventually arrived at 6pm. 3 bags full. I was hooked up all night. The process didn't finish till 6am Tuesday morning. Blimey, was I exhausted!
Haemoglobin level went up to 100. Brain scan was ok. They decided not to do the lumbar puncture (hurrah!) headaches got better. I had colour in my cheeks and could walk again. In the afternoon I was told by the consultant that I could go home as they had a chronic bed shortage and I was the 'wellest' person on the ward. I was not going to complain. What a relief. Back to Grassmount. I can stare at the winter trees outside of my kitchen window and make a cup of tea. Such simple necessities.
In the end it was thankfully a short sharp visit. But not without consequences. They have had to up my steroid intake while the red blood cells start to get back into a healthy production line. So back come the tremors, fat face, loss of taste etc. I am having to go back to HOP clinic everyday for blood work to check haemoglobin doesn't start to drop again. So far it is ok, but hasn't got above 109. My whites and neutrophils, which had finally been at normal levels last week, have dropped dramatically. I am told this is due to increase in steroids. Have no idea how much longer I will have to remain on these wretched pills, but am pretty fed up with the whole situation, especially as I was almost off them (after 6 months).
Not sure in the end what caused all the problem. I think it was a mixture of a rather cavalier doctor decreasing my steroid intake too quickly the week before the infusion. Despite my blood work showing a lowering of haemoglobin reading, this was not picked up, so my haemoglobin count had already started to fall before the infusion of immunoglobulins took place. Plus I had a double whammy of bad reaction to infusion and antibiotics. Everything all happening within 48 hours. The perfect storm.
I have just reread this and its all a bit confusing and long winded. So congratulations if you have managed to get yourself through it all! I need to go and make myself an omelette. I look forward to Luigi returning, he has been gone an age, and I have missed him big time over this last week. Its hard doing this alone. Though I have had great support from my family, Mel, Pip, Lulu and Julian. You are all stars. Thanks guys.
Lovely soft low November light shining outside. My neighbours holly bush is full of berries. The Robin is hopping around the empty hosta pot pulling at delicious bugs. The squirrel stole the coconut that I took ages to string and hang...
Hope everyone well. The annual madness is already upon us. Keep calm. Thanks for messages that still keep coming through. Stay warm, or cool if you are southern hemisphere. Back soon. tch xx
Over a month since I sat down to write this blog. Needs some updating. Cant remember too much what has happened during the first part of November. Things were going well. I was down to a visit every two weeks at the HOP clinic. Drove myself to hospital so saved a fortune on taxis. My blue badge arrived so made parking a whizz. Visited Tate Modern and parked right outside. What a treat! Regular shopping at Sainsbury's. Managed to walk up to Horniman Gardens from the house. Great. Planted daffodils for the spring and chopped back the last of the lavender. Garden all umbers, reds and yellows now; only fushia still flowering. Has clambered everywhere and looks great, all twisted and tangled and full of red and purple bells (thin variety). Birds busy on the feeder. Had a parakeet hanging off it the other day too. Local cats suddenly got wind of all my feathered friends and are starting to stroll round the garden too often. I am shooing them away. Am I turning into a mad woman I wonder?
So all was going fine and dandy. Bloods where stabilising and I was starting to feel a whole lot better. My steroids were being reduced, my tremors where getting less. My taste was coming back. My face was thinning down. Then last week the hospital decided to give me an infusion of immunoglobulins (part of the immune system, immunoglobulins help to identify and neutralise bacteria and viruses). Apparently mine were very low - so it was a precautionary measure as we head into winter. It took two long visits to the HOP Clinic to infuse me with 7 bottles of the stuff. The day after it had finished I woke at midnight with a screaming headache and high temperature. That went on all night. My brain was falling out. I felt so ill. The following morning I got an ambulance down to A&E at Kings and eventually ended up on a bed back at the HOP clinic. I was told my symptoms were a reaction to the transfusion, given paracetamol and antibiotics to fight off any infection that might be brewing. A routine blood test also showed my haemoglobin had dropped quite a lot. I queried this with the doctor on duty, but was told it was normal.
Got home, swallowed all the pills. Didn't want to eat anything. Watched my temperature spike. Slept. Friday morning was feeling a bit better, so drove to pick up new glasses from Specsavers…stayed the rest of the day pretty much on the sofa. On Saturday my temperature was still a bit high. I looked yellow. My breathing had deteriorated. Walking up and down the stairs suddenly became very hard work and took ages. Sunday was even worse. Breathing more difficult, even harder climbing the stairs, dizzy and pale. I read the side effects of the antibiotics I was being given and decided that they were possibly causing the problem. "can effect red blood cells, causing breathlessness, yellowing of eyes and skin, dizziness". Eventually called Kings to ask if I could stop taking the antibiotics. The registrar wanted me to go into the hospital immediately. Not what I had bargained for. Was very reticent but figured it was better to be safe than sorry. So Mel took me in. A dark windy Sunday evening. What utter misery. Suddenly I was being pushed in a wheel chair down the long corridor of Davidson Ward and into Room 5. The memory of everything - blue uniformed nurses, smell, food, bleeping monitors etc, came flooding back in one big whoosh. This was so not what I ever wanted to experience again. I held my breath and shut my eyes for the night. Though didn't get much sleep. It was a crazy few hours, full of blood tests, doctors calling into see me at 2am, calcium drips.
In the morning I was told I had a haemoglobin level of 65 (baseline is 115) and therefore needed a lot of blood fast. Due to the continuing violent headaches it was also decided I needed a brain scan and possibly a lumbar puncture. Oh dear, it was all coming thick and fast. Wheeled here and there. Shunted through CT scanners, more bloods taken (no hickman line anymore, so everything in and out of me goes via a needle and canular, bloody painful too). chest X-ray. The new blood eventually arrived at 6pm. 3 bags full. I was hooked up all night. The process didn't finish till 6am Tuesday morning. Blimey, was I exhausted!
Haemoglobin level went up to 100. Brain scan was ok. They decided not to do the lumbar puncture (hurrah!) headaches got better. I had colour in my cheeks and could walk again. In the afternoon I was told by the consultant that I could go home as they had a chronic bed shortage and I was the 'wellest' person on the ward. I was not going to complain. What a relief. Back to Grassmount. I can stare at the winter trees outside of my kitchen window and make a cup of tea. Such simple necessities.
In the end it was thankfully a short sharp visit. But not without consequences. They have had to up my steroid intake while the red blood cells start to get back into a healthy production line. So back come the tremors, fat face, loss of taste etc. I am having to go back to HOP clinic everyday for blood work to check haemoglobin doesn't start to drop again. So far it is ok, but hasn't got above 109. My whites and neutrophils, which had finally been at normal levels last week, have dropped dramatically. I am told this is due to increase in steroids. Have no idea how much longer I will have to remain on these wretched pills, but am pretty fed up with the whole situation, especially as I was almost off them (after 6 months).
Not sure in the end what caused all the problem. I think it was a mixture of a rather cavalier doctor decreasing my steroid intake too quickly the week before the infusion. Despite my blood work showing a lowering of haemoglobin reading, this was not picked up, so my haemoglobin count had already started to fall before the infusion of immunoglobulins took place. Plus I had a double whammy of bad reaction to infusion and antibiotics. Everything all happening within 48 hours. The perfect storm.
I have just reread this and its all a bit confusing and long winded. So congratulations if you have managed to get yourself through it all! I need to go and make myself an omelette. I look forward to Luigi returning, he has been gone an age, and I have missed him big time over this last week. Its hard doing this alone. Though I have had great support from my family, Mel, Pip, Lulu and Julian. You are all stars. Thanks guys.
Lovely soft low November light shining outside. My neighbours holly bush is full of berries. The Robin is hopping around the empty hosta pot pulling at delicious bugs. The squirrel stole the coconut that I took ages to string and hang...
Hope everyone well. The annual madness is already upon us. Keep calm. Thanks for messages that still keep coming through. Stay warm, or cool if you are southern hemisphere. Back soon. tch xx
Thursday, 24 October 2013
OCTOBER SUNSHINE
Ciao tutti!
Blimey, it's been over three weeks since I last updated this blog. Time is all of a wizz and days are spinning by. Can't believe it is almost November. Clocks go back on Sunday. Today is stunningly blue. There is a three quarters moon sitting clear in the sky. The wild winds have stopped and the trees are taking a much needed breather from all their swaying. Plenty of leaves gone.
Since I last wrote things have been pretty good. I have visited HOP Clinic once a week for blood tests. Results for whites and neutrophils have been slowly improving which has cheered me greatly. Though neither have made it up to normal yet. Haemoglobin and platletes are holding fast and steady, bang in the middle of where they should be. That's very good news. At last they have begun to reduce some of my medication. Steroids first. Once I am off those they will start to reduce the immune suppressents. It's a slow process but hopefully my body will respond favorably. I am mightily tired of swallowing pills night and day. I am also fed up of having a monkey-moon face (fat and hairy). Looking forward to riding myself of all miserable side effects...
My strength is returning bit by bit. I can now walk up the stairs properly and some days even manage without having to use the banisters. I am still troubled by tremors though - feel a bit like a wibbly jelly constantly shivering on a plate, which is exhausting. Best news is that I have started to drive again! I am thrilled at this development. My world has started to expand. Walking round the roundabout is almost a thing of the past. Took myself down to Dulwich Park the other day. Me and my trusty stick kicking through the autumn leaves (tottering would be a more accurate description). Drive to sainsburys, the GP, even the hospital (which saves a fortune on taxis). Life is beginning to take on the shape of normality. This does a lot of good for my head too.
Last week I went with Luisa and Jan to the 'Multiplied' exhibition in South Kensington. This was my first major trip out for almost a year. Just driving through London streets was a treat. Crossing the Thames. Battersea Power Station. Kings Road. Everywhere alive with people. Everything just as it always was. What a buzz! It's so easy to forget. I have been so confined to a world of corridors, harsh light, needles, pumps, wheelchairs. Everyone I know dealing with their disease. Sickness, exhaustion, limp bodies. Consultants, doctors, nurses. Appointments, waiting rooms and plastic tea machines. The joy of stepping away from this world and starting to taste life as it used to be, is just so damn good. I am so happy to be here again.
Yesterday Pip drove me to the Serpentine to see an exhibition by Adrián Villar Rojas, 'Today we Reboot the Planet'. Worth a visit. Another wonderful afternoon out too. Perfect weather. We stood on the bridge in Hyde Park and looked across the lake to the vast selection of trees, all splendid in their autumn colours. I was suddenly hit with the notion of what a handsome park it is, right slap bang int the middle of London. I had a thought of kings and queens of centuries passed riding through burnished autumns, just like this one. Time is a funny old thing. Keeps on ticking. How fragile and fleeting life is. Yet how fantastically solid and reassuring the rhythm of nature.
And almost out of the blue, Luigi turned up a couple of weeks ago! He was here for six days. That was an unexpected treat. He cooked me saffron risotto, roast chicken and spicy sausage pasta (not all at once). I was hoping we could have gone to the Australian exhibition but got knocked sideways with a nasty asthma attack which kept us at home. He got busy in the garden instead. Not much colour left now - a few sad stalks of late lavender and the occasional passion flower. The fuscia is still blooming though. Hosta leaves have turned banana yellow and geraniums have got all damp, brown and floppy. The grass needs to be cut. I have a list of 'things to do'.
Hope everyone good. Sorry it's been such a long time between updates. Thanks as usual for all messages, emails, texts etc. I wish I could hold a big party and invite everyone. Will write again soon, meantime, love and greetings north south east and west. And Australian cousins, hope you are all safe. Back soon. tch xx
Monday, 30 September 2013
MOVING ON UP
Ciao tutti!
Another big gap between blog updates. Days are speeding by. Being brace free is fantastic. Walking around the house, up the stairs and round the roundabout is a breeze. I am still struggling with weak muscle tone and bad shakes (medication) which hampers my mobility somewhat, so use my trekking stick to keep me steady and upright. Back can ache big time if I do too much especially bending (emptying the washing machine), so often flopping flat on sofa to let the ache pass. Get a weekly visit from the physiotherapist, who gives me a range of exercises to do. Have to admit to not being very self disciplined in regards to these. I am sure my muscle tone would improve quicker if I did exercises everyday! Wrist is slowly improving too, though still quite swollen. Unfortunately the tendon in my thumb has snapped - apparently it can happen after a broken wrist - so I have a floppy left thumb that can't do much. It will require an operation at some point in the future to fix. They will take tendon from my index finger and attach to thumb tendon somehow. All sounds a bit gruesome and squirmish. I will be in another green cast for a further month and then physio to get thumb working again. It never rains but it pours. I really would like all this medical intervention to stop very soon!
My Hickman line was taken out a couple of weeks ago. A long and painful procedure as it had been in for over 9 months so was well bedded into my chest. After an hour of prodding, poking and cutting the doctor called for a vascular surgeon. There was talk they might have to send me into theatre. Blimey. However, vascular surgeon knew her stuff. A bit more cutting and some very strong tugging and finally the line succumbed. All out. Bloody and slippery. Alien leaving my chest. 5 stitches. Swollen, bruised and sore. But now, two weeks later, there is just a neat 2 inch vertical line. I am littered with scars from Hickman lines, pic lines and bone marrow biopsies.
My bloody neutrophils are still playing up. Dropping very low last week to 0.77, which makes me neutropenic again, so having to be careful with what I eat. I go into my usual spiral of panic, and hospital respond with their usual 'don't panic, it's fine' routine. I hope they are right. They say the low count may be due to medications. At least my haemoglobin and platelets are normal and holding steady. I have a clinic visit tomorrow and another blood test. So praying to everything and everybody that the counts will have gone up. Any lower and they will probably do a bone marrow test to see what is going on. Not what I want. I don't want anything to be going on. Except for getting better. Waiting to see specialists for my eyes (which have been playing up for months) and my mouth (have lost all sense of taste). Oh, it's a long, long process this recovery.
Last week, lewisham delivered my 'bath chair'. Brilliant. Now I can have a bath and a hair wash. The bliss of sinking myself into hot water after three months of standing at a sink! Chair goes up and down with a battery operated system. Easy to heave myself out of, so climbing in and out of the bath is now possible.
I have been managing ok without Luigi. Better than I imagined. Life has been very social - lots of friends and family have been visiting, which has been great. Lulu took me down to sainsburys, dressed in face mask and clutching trekking stick. Looked very odd and got various sideways glances as I pushed trolley down the aisles. Forgotten half the things that sainsbury's stock, so it was great to fill up with treats and broaden my menu somewhat! Walking daily round the roundabout, managed 5 times the other day. Doing some very light gardening too. Wendy bought me orange violas, so I have a bit more colour to add to the fading shades of summer. Still butterflies and bees visiting.
I am planning, at some point, to get up to the Royal Academy to see the Australia exhibition. I hope it will inspire me. Still not managed to do anything creative. Severely lacking motivation. Every time in go into the garage I see half my studio piled high. It is overwhelming. I guess at some point something will click and I will start to feel hungry to make again.
Bath time for me! Hope everyone well and enjoying the season of 'mists and mellow fruitfulness'. Thanks as ever for all messages. Great to still be hearing from you. Back soon, meantime love to everyone at all compass points. tch xx
Tuesday, 10 September 2013
BRACE IS OFF!
Ciao Tutti,
Got a phone call from Kings this afternoon to say that I can take my brace off...oh what a relief! It feels amazingly light wandering round the house with just a t.shirt on and no metal bars strapped across my chest or thick velcro wrapped round my waist. 9 weeks to heal which is pretty good as they had originally said twelve. Back feels stiff and it is odd bending down - keep imagining my spine will snap in two. But soon I can have a bath and a hair wash - joy. I have already done some gentle dead heading in the garden..Lots of physio now to strengthen up my back and wrist. No more climbing on sofas, chairs or tables and I hope that's the last of my bone problems.
The CT scan of my lungs showed two small patches which the consultants reckon is residue infection, but nothing more sinister. The last week or so has seen a big improvement in my breathing and I am coughing a lot less- don't sound like a foul hacking smoker anymore.
My steroids have been reduced, which will hopefully reduce the tremors that I have been afflicted with for the past couple of months. However less steroids runs the risk of a low haemoglobin count and reactivating the Haemolytic Anemia, which will mean more blood transfusions. So it's a matter of balancing everything out. Blood test last Friday did show a drop in my haemoglobin, so things having to be monitored carefully. White blood count and neutrophils still low, but moving, at a snails pace, in the right direction. Also they have reduced my immuno suppressant drugs, so hopefully less headaches and nausea. Fingers crossed my body can handle all the changes. It feels like I am taking some positive steps forward after spending the whole summer treading water.
Last week have been sitting in the garden getting the last of the summer sunshine. I forgot what it feels like to feel warm sun on my skin. How it lifted my spirits. Also managed to do some circuits of the roundabout. Mel and Lisa came for tea on Saturday and we did a mammoth 3 times round! Then on Sunday went up to the Horniman museum and had a slow walk round the gardens. First time I have been up there for almost a year. The place looks like a child's paint box, bursting with dahlias of every colour. The vegetable garden full of interesting stuff: cranberries, peanuts, enormous waxy yellow corgettes or perhaps they were pumpkins...either way, too heavy to lift off the ground. Iconic London skyline gleaming under september sun and a backdrop of skidding clouds. It was great to get out of the house and move around another space.
Today Luigi has gone back. Very sad for me. He has been brilliant, as usual. My rock. Will miss him hugely. There is always such a big hole when he leaves. A silent space that is difficult to fill. There used to be Lilly who would take the edge off the loneliness. But now it feels like I am starting over. Oh dear! Feeling sorry for myself. However, got a lot of friends coming round, which I am looking forward to. And I need to start to try and put some kind of structure into my life, organize some simple work things. Was spoilt by Luigi, who did everything, so it will be good to regain some independence and easier to do now that my brace is gone.
Summer shadows disappearing. Autumn creeping up. That dank smell in the air. Foggy mornings. Rain arriving. Evenings gathering in quickly. Blimey, how time flies...
Hope everyone is well. Thanks for all messages, love to get them and hear how you all are. Also thanks for messages from 'unknown' friends who follow the blog. I guess it's 'back to school' for lots of people, or at least a version of that. So hope summer was a memorable one. Maybe we still got sun to have. I predict a glowing late September and warm October. That will be good. Greetings to both hemispheres. Whether your upside down or right way up, sending lots of love. Back soon. tch xxx
Thursday, 22 August 2013
MY BLUE HIBISCUS...
...is in full bloom and looks great. So too agapanthus. Bees in seventh heaven! Just realised its been over two weeks since I updated blog. Sorry to those who check regularly. Recovery slow, but moving on. Still very shaky on my feet, so not managing to walk much: pad around the house, up and down the stairs and occasionally I do a length or two of the garden (which is small!). But basically I move from bed (upstairs) to chair (downstairs). Brace is heavy and uncomfortable, so can't sit for too long without back aching. I have an X-ray booked for 4th September to see how the healing process is going. I am hoping they may say brace can come off, though likely to have to wear it for another six weeks or so. I have managed to sort myself out some 'community physio' - so as of next week will get a physio visiting at home with a gentle exercise routine. Green wrist cast is off, replaced by a lighter skin coloured splint. Wrist still swollen and looks odd. X-ray next week to see how well it has healed. That's my bones update.
Down to weekly visits to HOP clinic. Hurrah! Last bloods all good. Haemoglobin now back to normal level. Neutrophils and white blood cell count dive bombed a couple of weeks ago, but have since recovered, albeit slowly. Least going in the right direction. Go in for blood test tomorrow, so hoping that results will be good. The constant up and down of results is psychologically exhausting. Roller coaster riding. My lungs still causing problems - get very breathless at times, which limits my physical activity (unable to walk round the roundabout). Consultants seem to think I may have GVHD of the lung and are treating me as such. I still have a mountain of daily medications to take. Nausea rules. Often wake up feeling lousy, full of ache and general discomfort; other days feel much brighter. Get tired easily, often have long afternoon catnap. Appetite still poor, lost lots of weight and muscle tone. Jeans hang off my skinny legs and my bum has all but disappeared.
My studio no longer exists due to a fire that happened way back in February. The studio above mine caught fire (dodgy Christmas tree lights) and was completely burnt out. Luckily my studio wasn't fire damaged, but was badly water damaged. Lost a few pieces of work, but most materials and print equipment ok. Ceiling caved in and covered everything in filthy dust, grime and muck. So my beautiful studio - already for me to restart with a creative recovery programme - has been pulled apart and packed away. The landlord will get it fixed up eventually but will probably sell all the units on as one big live/work space...way beyond my budget. Half the equipment and work is stored in my garage while the rest will go into a storage unit in forest hill next week. It is heartbreaking. I had worked so hard to get the studio set up. It was already to run small scale workshops, with bespoke workbenches, etching press, kitchen area, badge making area, a mezzanine floor housing a tiny print 'library', computer and printer, and a great music system (drowned by firemans hose). Now it's all in bits and pieces and packed away in different parts of forest hill. I can't see it ever being restored. In fact I sometimes wonder if I will ever print make again. I don't feel an ounce of creative juice coursing through my veins. The very thought makes me exhausted! But perhaps I may start with some small scale lino cuts which I can hand print on the kitchen table. Back to basics...nothing wrong with basics.
That's my blog update for now. Have seen lots of friends over the past couple of weeks, which has been great, even though I have been sat like a trussed up chicken in my granny chair and probably not the most aimiable of hosts! Special thanks to Lu for cutting my toenails (can't reach them), sorry I squeaked so! Big hallo to everyone out there and thanks as ever for all messages which contine to fly in via text, email, blog and real live snail mail. Love hearing from you all. Keeps the days rolling by. Little by little and bit by bit. Off now to give myself stomach injection. Back soon. Ciao tutti. tch. XX
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