CREATURE COMFORTS

Dear All,

Blimey! What joy it is to be sat here in front of my big 21 inch screen iMac. So easy to read and type - no balancing my iPad on my knees!  Got home late on Saturday afternoon. Lulu and Julian doing me the honours of collecting me outside the front door of Kings. It is icy cold. I am wrapped up to the nines but lovely to feel the elements on my face. Dark with spitting rain and stars as we speed our way back to Forest Hill.  I see warm lit houses, spikey winter trees, kids on bikes, headlights, dog cocking a leg at the curb side. All life again.  I sink back and breath slow and deep.

I am feeling ancient. I have to go up the stairs one at a time. Huff and puff. Very slow and full of tremors and internal shakes. My ears ring, tinitus whining. Aching limbs. These are all results of the aggressive medications I am on (5 times a day total of 18 tablets) I have to get used to this. These include my anti-rejection drugs. I need them big time. But side effects are what I have to stomach for a good few months, until the dose can be reduced without any danger to me.  My nausea though is better managed at home. Access to food, little and often. Yesterday it was scrambled egg on toast at 9am. This morning it was bacon and tomatoes on toast, served in bed (cooked by you know who) with a mug of tea.  Spoilt.

I woke at 6am today and in the blue grey underbelly of this winter morning I heard the thin soft sound of bird song.  So different to the summer chatter that is busy and bossy and "my song is bigger than yours".  It was shy, tentative - almost like a secret.  I see outside a light scattering of snow. I wrap my duvet tight round me. I realise how lucky I am to be over the first two hurdles and out of that wretched hospital room.

I have spent the last two days in slow motion. Kitchen. Post. Sofa. TV. Bathroom. Computer. Sofa. Computer. Sofa. Kitchen. Sofa. TV. Bed. It all requires up and down stairs. Ridiculously, I am shattered after a day of such expended energy!  Luigi shops, cooks and washes and provides me with a continuous supply of hot water bottles and sliced carrots and mini babybel cheese.  He also puts out endless handfuls of bird seed - the robin visits frequently throughout the day. So too a handsome pair of jays, two squirrels, a thrush, a blackbird and as of yesterday a small wood mouse, who is remarkably familiar and sits happily nibbling away. Definitely not camera shy! Mmmm, seems while the cat's away the mice really do play! Lilly is no doubt turning in her grave. All that dinner!

Tomorrow I have my first HOP clinic (Haematology Outpatients).  I am nervous. I have been without a daily blood test for 3 days. Have my counts fallen - or rather are they holding without the GCSF? All will be revealed in the morning.  Tense. More waiting. More wondering. Best not to wonder. That is an important lesson I have learnt. Take each day as it comes. Pointless to do anything other.

Exhausted now after writing this, with supper in between.  I am off to watch Miranda and have a laugh. High fives to everyone in both hemispheres.  It is just the BEST being home. Back amongst all the flotsam and jetsam that makes up my life, my house, me.  Catch you all soon. tch xx

 robin

wood mouse

winter view from my bedroom window

YO-YO RIDING

Hallo All, sorry for the silence. Been struggling still with nausea and the pills I am on to try to combat it send me to sleep for half the day. Three days ago my counts dropped a wee bit, but then stepped up to the mark the following day with a neutrophil reading of 1.36. So I was firing up ready to explode. Yesterday I was visited by the new young Registrar who gave me the much awaited feedback on my bone marrow report. She tells me that there is no sign of disease, which of course is a good thing. I don't want the leukaemia to return before I have had a chance to build a new fighting fit immune system. However she seems unclear as to what the rest of the report was saying. This is a bad moment. She mutters something about an empty bone marrow, ie no signs of regrowth. She says the consultants are meeting tomorrow and one of them will see me on the ward round in the afternoon to explain to me more fully the results of the report...She leaves the room. My head goes into overdrive: will this will mean another bone marrow test, maybe the babies have given up the ghost, am i sailing up the creek without a paddle? I sink, rather pathetically and too quickly for my own liking. I realize how fragile I am psychologically. How so easy it is for me to crumple. The afternoon drags on. One of my favorite nurses is on night duty and gives me a gentle pep talk. I manage to stop the downward spiral. The report is giving an account of bone activity that was taken a week ago. Even if it wasn't showing anything positive then, the chance is, that with a further bone marrow test, it will show something is working now. At least that is what I think. I fall asleep exhausted after watching 'Africa' the new David Attenborough documentary. Lions and lizards, mountain gorillas and dusty elephants. I wish I could be wandering across the savannah of East Africa....

Damn! This has been a very hard 24 hours. I spend the morning trying not to throw up, and manage successfully (just). Luigi's soup settles my stomach. I sleep half the afternoon. The consultant appears at 4pm. He spends a lot of time talking about my nausea, goes through the long list of tablets I am on and stops a couple of them. Unable to contain myself I ask about the bone marrow report. "Oh, that's good. All fine. Your counts are going up and the marrow is showing signs of regeneration" I am gobsmacked! I get him to repeat what he has just said. And I hear it all over again. Never have words sounded so sweet. I find myself wiping away a couple of tears. There is no need for a further bone marrow test just yet (though I will have to have them monthly for a while). The prof goes on by saying that I should be able to go home on Saturday if all stays well. I am like a firework about to explode in bed. I beam from ear to ear. It has been such unexpected news. I will have to learn to self inject. Daily GCSF doses to keep my neutrophils boosted until they reach a total of 2.5. Today they are 1.6, which means that I can start to eat all the things I want as soon as I am home. I crave fresh crunchy lettuce, tomatoes, fennel, chicory. A big salad is for the making...

Bizarrely, as if by some strange unspoken sibling magic, both Richard and Adrian turn up within half an hour of the ward round. I feel like a kid with a shiny new Christmas present. Thrilled at telling them. As Luigi says, in his best english, "really good news". We celebrate with cold kit-kats and M&S ham sandwiches (mmm, the makings of a Famous Five picnic - but no lashings of ginger beer). As I tip tap this out now, I close my eyes and know that I will soon be feasting my eyes on sky and clouds and planes and trees. My garden. All sodden and wintery. The robin that hops by daily at breakfast for her feed. My ears will be full of the sounds of everyday: the creak of my bedroom window opening, the sound of the kettle filling, the spinning of the washing machine. It's amazing how these simple noises give shape to our domestic lives. Yet who ever bothers to think on such things? Until they are gone.

Dear friends, family and total strangers (of whom I know there are some that read this blog) - This particular update has been a long time coming. Thanks to you all for your support, interest, encouragement, prayers, positive vibes, candling lighting, carol singing (thanks specially Sims and Cuming families!) texts, mails, smoke signals etc. I have no doubt that without the backing of you all, in so many different ways, I would not be at this stage. Emotionally for me it really has made a difference knowing that you are all out there gunning for me. As the consultant said this afternoon, "it's still early days". I know there is a lot of road left to travel. But so far, so very good. Me and the babies walking hand in hand. Regeneration. The New Generation. Back very soon. tch xxx

CLIMBING LADDERS

Woo-hoo! Neutrophils climbed up to 0.97 today. White cell count up to 1.56. Fantastic! Don't want to count chickens etc, but things looking good. Hemoglobin and platelets dropping frequently, so having to have regular blood and platelet transfusions. Last night I had a reaction while having a platelet transfusion, which was very sudden and rather scary: stomach ache, fizzing lips, dizziness, red itchy body rash, hot burning skin and an inability to breath through my nose... It was sorted quickly with a shot of steroid and antihistamine. Hope not to repeat this experience.

Hit by big waves of fatigue. Even walking to the quarter deck to see the park is hard work. Some days I am not able to do it. A shower is enough. In fact a shower is exhausting! Still troubled by nausea in the morning. But still keeping a good appetite. Homemade soups everyday, filling me with vitamins and goodness. Luigi and I are playing lots of cards. Lulu and Julian came for a visit today. Oh yes, the outside world... Amanda came in two nights ago and gave me another reflexology sent from heaven. I fell asleep...

This week I will get the results of my bone marrow and third chimerism. This should give a clear idea of what is actually happening and confirm that grafting has started to take place. It is a difficult time to wait. Especially as my counts are going up. I am full of glee, but have to hold onto it for a bit longer yet. I don't want to jump ahead until everything is confirmed by the consultant. It really is still one day at a time (sweet Jesus).

Short and sweet tonight. Too tired. Hard work just tip-taping. Feels like I am stuck in glue.
Hope everyone well and happy and still keeping up with all those fine new year resolutions.
Big wave and hugs to all Australian cousins (wherever you are!) I hope the bush fires in Tasmania haven't caused too much damage - and everyone safe. A special hallo to everyone in Somerset. Between you all, there is quite a West Country posse. Snowy Cleveland, thinking of you too. Love to everyone everywhere. You are all part of my armor. Links in my chain. Thanks. Back soon tch x

MOVING ON UP

Already two days into 2013. My, how time flies! Been a tricky few days. My neutrophil counts continued to fall, yesterday the levelled out at 0.036 and today they have managed a tiny about- turn and moved up to 0.04. Which is minuscule, but gives me hope that things may be going in the right direction. Oh, I hope so. This faffing about at almost 0.0 is doing my head in. I am not sure which is the hardest, the psychological or the physical. It's an uncomfortable see-saw whichever.

Suffering still from nausea. Horrible. They try to control it with injections. They feel like wasps stings. Also have to have injections into my stomach everyday, something called GCSF, which promotes growth of neutrophils (not that it seems to be doing much promoting at the moment).

On 31st I was wheelchaired down to the endoscopy unit. Was dreading the whole event (it had been preceded by me throwing up all my morning tablets which I had had to take on an empty stomach. Fifteen of the buggers). Staff in the unit were very good. Capable hands. I had oxygen pipes clipped into my nose and a Hannibal Cannibal contraption fitted over my teeth and mouth to stop me from biting down on the tube they were going to insert. Then they sedated me and I don't remember much after that. Some gagging and gurgling. The process takes about 5 minutes. Camera down into my stomach, through to large and small intestine, taking biopsies along the way. Next thing I was in the recovery room and then being wheeled back to the ward (spotty hooded dressing gown and mask). Luigi was waiting for me with homemade soup, which went down a treat. One more horror over. And, as I suspected, initial reports seem to show everything is ok. No GVHD, which is what they were looking for.

Today I had a long bone marrow procedure. It's weird how some people can do it so much quicker than others. This was a young doctor, clearly taking a lot of trouble to try and give me minimum pain, but she just succeeded in drawing out the process, ultimately making me more stressed. It hurts like hell whatever!

I have returned to Bruce Willis lookalike. A five minute buzz with the ward clippers and all the dropping hair has gone. Which is a relief. Too much in my mouth!

Thanks for all the blog messages, texts, emails, etc. it has been great to hear from so many dear friends. Glad you are all still on this journey with me. Means a great deal. Thank you. Hope everyone one has recovered from seasonal revelries. Now time to strike out into 2013. Next stop, my birthday! Back soon. tch xx

STILL DROPPING

Very quick blog update as I am ridiculously tired. Feel I been hit over the head with a sledge hammer. Counts still falling. Wish I had someway to put the brakes on, but all I can do is hang out and wait. As one of the doctors said, everything is working at a cellular level and beyond my control. It's a horrible position to be in. Am just about to start a stint of 12 hours or so of 'nil by mouth". Some point tomorrow they will be performing the endoscopy. Though I don't think I need it. But, hey, what do I know... Whoops feeling a bit cranky this evening. Not got out of bed for two days. Seen no sky. Hair dropping out. Pillow full of it. Chemo head starting to appear. Another new thing to appear is a high heart rate. But still managing to stay infection free. Hope at least I can keep that up for the new year. Talking of which, when the midnight strikes tomorrow, happy new year to all. Lets hope 2013 brings the best for everyone. Bed for me now. Greetings and love. Back soon. tch xx

MINEFIELD EXPLOSION

Hi All,

Been a few days since last entry. Things have gone a bit pear shaped. Unfortunately, since Christmas Day my blood counts have started to fall, reversing the trend that had resulted in such a positive start to the SCT. The drop has dampened the Christmas sparkle somewhat.

My white blood counts and neutrophils dropped quite dramatically on Christmas Day: neutrophils down from 1.46 (which is almost normal level) to 0.08 and white cells from 1.77 to 1.1 Since then the drop has continued but by less dramatic increments. My neutrophils as of this morning are 0.05 and white cells, 0.86. Doctors cannot give me any reason for this sudden reversal in fortune. It may be that baby number 2 is putting up a bit of a fight and wants to become the dominant graft cell...so maybe there is some internal struggle going on which has resulted in the lowering of my white cell/neutrophil count. It may be something more sinister. If drop continues they will have to investigate further. However I am hoping that the babies are just kicking off a bit and trying to determine which will be the dominant one. I should have a chimerism result in the next few days too, and that may shed some further light on what's going on. I will try and explain 'chimerism' in simple layman's terms: chimerism measures the percentages of the different blood groups that are currently moving around my system. The last test a few days ago, showed that there was 30% of baby no.1 blood group and 70% of my original A positive group. This is what prompted the medical team to suggest that early engraftment was already taking place. But perhaps that was too hasty a conclusion to draw (and raising my spirits stupidly high). Anyway, we shall see over the next week or so. The waiting to see if the stem cells have grafted is hard enough. To now be wondering why my counts are dropping too, makes things double tense. Focus on the positive: no infections. Praying to all of the Gods.

I am often bothered by odd pains in different parts of my body and still struggle with nausea. Loosing hair by the finger full and loosing a bit of weight too. However still managing to eat Luigi's nourishing soups everyday. I walk up and down the 'quarter-deck' for five to ten minutes daily. It is my only glimpse of the outside world: an empty Ruskin Park, save for the odd dog walker. I see the sky though the tangle of bare winter branches. Sometimes I see the odd light twinkling from the houses on the far side of the park. The other day I glimpsed a plane too. That was a treat! It is tough to only look onto a brick wall. My thoughts bounce around like a wild ball in a squash court. Round and round. Side to side. Bang bang. No way out. No exit. Exhausting.

I worked out today that I have been at Kings for over three weeks now. The time has gone by so quickly. It has not yet been the nightmare I was expecting, so in many ways I have been really lucky. But I dream sad dreams of Lilly. Too often. Woke in tears one morning. I get to feeling blue sometimes. While other days I am longing to be out and working in the studio. I find myself building plans for new ideas, things to develop when I am out of here. That makes me feel excited and raring to go. Although I have little physical energy at least my brain has still got some umpfh...

Hope everyone had good seasonal festivities and now enjoying a wind down before the last blitz of the year. Thanks for all your many christmas messages and cards - as ever, great to hear from you all. Keeps my spirit afloat!

Hope next time I update the blog it will be with brighter news. Glum doesn't make for such good reading, I know.

Hugs around the globe. A presto tutti. Back soon, tchxx

DECK MY DRIP STAND...

Quick Christmas message to everyone to say hope you have a merry time, full of feasting and fun. Hope too, all uk blog-followers will mange to remain dry and not have to spend Christmas Day in wellingtons bailing out bucket loads of water...

Update from Room No.9 is that I didn't need to have either procedures today. Good Christmas present! Possibly may have to have them further down the line, but for the time being bye bye colonoscopy and endonoscopy. Sounds like a pair of terrible twins. My consultant informed me today that it looks like grafting is already taking place. Highly unusual for a double cord blood transplant to graft so early, normally takes 21 to 35 days. I think: wow, all those positive vibes and prayers and candle lighting is really doing the trick...I also think: eek! panic! why has it happened so quickly, does that mean there's something wrong?

I am still under the status of 'watching and waiting' for GVHD. I am being closely monitored so they can take appropriate action at first sign of any organ attack. Today had a really bad heart burn, which just came from nowhere and had me shouting out in pain. They strapped me up to an ECG monitor to check my heart was still in full working order. Which of course it was. I swallowed a huge mouthful of the thick sloopy aniseed stuff (hospital version of gaviscon) and within 40 minutes things had calmed down. I hope to god GVHD doesn't attack my digestive tract, as that would be very painful to deal with.

Scalp starting to hurt and get sore. I notice too the first sign of my hair starting to fall out again. I had hoped I would pass this side effect by, but seems that yet again I will be donning a range of cashmere beanies for a couple of months. They tell me that after TBI hair grows back thinner. Though for those of you who know me well, that may not notice much...

Thanks to so many friends and family, near and far, for all your amazing support over the last six months. I know that every ounce has helped me on this long road to recovery. As we turn into Christmas and with 2013 just round the corner, I am feeling very positive about the future. I know I am still in the minefield and chance I may trip up a couple of times as time goes on, but with your continuing support...I just got a good feeling inside.

Much love this Christmas Eve. tch x

ps. check this link out: http://youtu.be/GwRRebTOvWY thanks havelock walkers...

my decked drip-stand!

christmas eve visitation: Lulu, Julian and Luigi