CHILLING OUT

Been a week since I last wrote this blog; pleased to report it's not from feeling chemo hell that I have been slow in updating but just been quietly recovering at home. Still very tired and very slow. Still swallowing a fistful of huge fat white tablets twice a day. Manage to walk round Grassmount roundabout every day, sometimes x 4 which feels a ridiculous achievement!

Upping my visitor intake - yesterday Mel drove me up to Horniman Gardens and we sat on the wooden seats by the bandstand and admired the London skyline view, including The Shard (with Guys hospital squating below the gleaming spire). The park was swarming with buggies, seemed like there was some kind of buggy convention, but maybe just bank holiday hordes...Nic came over in the afternoon and Lulu and Jan came over early evening. Lu threw together, in a matter of minutes, a wonderfully healthy soup with turmeric, beans and fresh vegetables. A.Wray came over on Sunday night and gave me heavenly reflexology: I lay flat out on sofa with knitted beanie on my cold bald head and wrapped in my favourite rug (bought form MOMA in New York). Luigi cooked delicious asparagus risotto (I ate a big plateful, first food I enjoyed for weeks) and we played cards. Perfect.

My garden still producing sweet peas and late summer clematis. The place is a-buzz with bees too, crawling in and out of fuscia bells etc. like to think I am doing my bit for the bee population! Luigi did some rather fearsome pruning at the weekend - was too tied to intervene, but I guess it will all grow back!

As I write this I am in the Day Unit receiving 2 units of blood - a four hour procedure and my bum is very stiff. Only one and half hours to go... Pleased to report that all my blood counts have finally bounced back up. A healthy 2.2 neutrophils, 2.4 white cells and 50 platelet count. Platelets are what clot the blood. Last week they had dropped to 4 (should be 150+) which was shudderingly low, but a transfusion pushed them up to 19 and now they are going up on their own accord. Just my haemaglobin that is low, hence today's transfusion. I have a bone marrow biopsy to look forward to next Monday to see if I have gone into remission after the FlaGida chemo regime. Please cross fingers you all. I need to go into remission. Then back to Guys on Friday 7th for my second round of chemo. Another 5 days of nightmare poison, stomach injections and filthy gloopy mouth. Am dreading it, but it will at least be the last one. It's phase two of this treatment, the bone marrow transplant, which is starting to stress me out. I will blog about it later, at the moment I want to keep that reality as far away as possible.

Thanks for blog comments and emails from both hemispheres, always a huge pleasure to receive them. Hope everyone is well and enjoying the final countdown of summer. I send you all love and high fives. Moving on and moving up. Paralympics start on Thursday, least this time round I will have the energy to watch.

Just me and a handful of nurses left in the Day Unit. My transfusion machine is humming and clicking next to me, only quarter of a bag to go. 5pm sun is dropping silver light onto the scaffolding outside the window and throwing shadows onto the empty red Day Unit chairs. I can see little squares of sky through the muddle of metal bars. Luigi on his way to pick me up. I close my eyes and imagine I am in my studio making up a periodic table and that tomorrow will just be another normal day...

A presto tutti x tch

RESPITE

Home at last! Made it yesterday afternoon complete with enormous green sack full of medicines. Too many pills to pop. A selection of antibiotics to protect my lungs, kidneys and stomach from a variety of infections. Hard work just swallowing them all - most of them enormous great buggers! Warm bath this morning. Heaven. Food still very problematic and not really wanting to eat anything, but having to try little and often. Hope appetite comes back once my bloods counts go up. Lost 9 lbs- (hurrah, hit my tone zone in double quick time!) and a lot of hair...

Luigi and I curled up on sofa this afternoon watching Casablanca. Lilly joins us, boney curled up ginger ball. Purring madly but clearly confused at my almost bald head! She looks at me quizzically. I stare out of the window at my square slice of garden - a bit dusty and overgrown wild edges. A dark blue hibiscus, lavender bending with bees, an elegant red fuscia bush that has spread through clematis and roses and now stands over 7 foot tall (Luigi and I bought it from Sissinghurst Castle seven years ago - a thin spindly twiglet in a plastic pot). A fluorescent yellow potentilla, hot pepper geranium and a mass of passion fruit crawling over the fence and stretching its way up to the top of the house. Just as two years ago, my garden gives me great pleasure. In a few days time I want to be out there pottering and drinking a cup of tea in the sun. Solid grey today though. This is the August we know.

Off now to do one turn round the Grassmount roundabout, my exercise for the day. Tomorrow will be in Day Unit for a platelet transfusion and blood tests. Dull blog. Bit like the weather! But so good to be home. Catch up soon TCH

TREADING WATER

Saturday: antibiotics finished! Platelets transfusion ongoing as I write. Blue sky and HOT outside. I have been managing to get out of bed and do a few turns of the ward corridor - that's the extent of my existence at the moment! But it's much needed exercise for my weakening muscles. At last feeling a bit more human. Will have 48 hours without antibiotics before they consider sending me home, but with luck and a fair wind I could be back at Grassmount on Monday afternoon...and hopefully stay there this time. However none of my blood counts have recovered, so neutrophils etc are 0.0 which still makes me very vulnerable to infection. Horrible old tightrope to negotiate. Hair still dropping and I am covered in peeling crocodile skin despite Luigi plastering me in Nivea cream everyday. What an attractive picture I paint! The filthy poison of chemo.

Global communications - I send hugs to you all - local London troops to far flung corners of Australia, Singapore Hong Kong, Cleveland Ohio, beloved Italia and all across the UK. Your messages of support (and menus TP) are always so welcome and keep my spirits afloat.

I believe the football season is about to kick off. I hope the signing of RVP will be enough to wrench the title back from City. The final day of last season will never be forgotten...those of you with football interest will know what I mean, the rest of you just yawn and pass this paragraph by.

I have a plan to be wheel-chaired round the lavender garden this pm. Some fresh air on my face. Luigi bringing my beautiful wide brimmed summer hat to keep the rays off my skin. Would prefer to be pitching a tent in East Prawle, counting rabbits and collecting firewood. But cant have everything! Exactly this time last year thats where we were. I swam in ice blue sea to try and fix my shoulder. We ate 'scream-for-cream-teas' almost everyday. Wore wellingtons a lot. Foggy mornings and high blue sky afternoons. Next year.

Salute tutti - a presto TCH

COMING UP FOR AIR

Hallo all - still here! Been a long time...has been a rough and rocky road recently but I hope I am finally emerging out the other side. Last Friday 10th August I was sent home in the evening. I managed 12 hours and then it all went pear shaped. I was re-admitted with a temperature which soon became a fever. This signals neutropenic infection and I have been hooked up to hardcore antibiotics ever since. Lots of blood and platelets transfusions and virtually continual fluid drips. Forever hooked up to this machine that blinks green lights and beeps every time there is a 'downstream' blockage is exhausting. Like having a very annoying shadow that I can't switch off. Hair is starting to fall out so Luigi went to work on it this morning and now there is not much left to fall out. GI Joe. My days all blur into one continual shape. I hope soon they become separate again. More soon. tch

DOWN THE RABBIT HOLE

Hallo out there in the blogosphere. Going to have ago at writing a short sentence or four. Without wanting to feel too sorry for myself though, writing a handful of sentences is unbelievably hard work. And without egging the pudding, the last 9 days have been the hardest and most challenging of my 54 and a bit years. I had no idea just what this miserable poison was going to do to my system. When I have managed to sleep I have been riddled with disturbing nightmares, the sort that never finish and seem to go on repeating themselves incessantly in a feverish way. My mouth has been a disgusting mixture of claggy, gloopy and dry. I have dreamt of layer upon layer of thick unshaved old cow hide stuck together with rabbit glue (book artists, please note). I wake up and want to find mum to come and take it all away. But she isn't here and she can't. It is hell on wheels. And that is just the night time. While FlaG-bloody-ida was flowing deep through me I could not do anything except lay in a curled heap on the bed. No interest in anything, horrible nausea, no hunger, no thirst. Doing either is really hard work. Liquid takes on a strange shape and taste, so much so that I spit most of it out into hospital regulation Lotus Health and Hygene Tissues. Thats disgusting too. Ha! I think: I should be sitting under a wide westward sky strewn with pink and soft violet, on a wooden rocker, tartan shawl and an old spittoon. That would suit me fine and dandy. Cotton candy.

It's a bit too disturbing recounting all this. I have only managed to get out of bed today and moved from one corner of my ten foot isolation room to the other. I don't pace, I can't but I am very agitated and restless; my skin itches, my hair has had ten days sticking on end, so I look serious erasure head. It better all fall out after all this, getting it cut off an all. Spit some more. Pink sky. Let me drown in that sunset.

Beyond all this nightmare there has been Luigi. Constantly there. Twice a day. Micro managing me, attending to my every need no matter how small the blanket needs to be tucked or folded or tissues thrown. His patience is truly remarkable. Just simply my hero. And Lilly demanding his attention too.

Seems to have taken most of the evening writing this but has kept me blessedly occupied. Thanks to oh so many of you for healing thoughts and colours and messages and emails and blogs and texts. I have started to catch up on them. As ever, great to hear from you all. Oh and ps I am so missing the Olympics can't even wear my team gb shirt!

Bloody awful

Dear all, thanks so much for blog messages, emails and texts. Always brilliant to hear from you. This chemo regime is totally wiping me out, hense lack of blog. Today I have managed a cup of tea and two biscuits. Great diet control, but not what I need. I want to be in Oban with Cathy and John,watching calm blue waters and seals. Back sometime. Tch

RETURN TO SAMARITAN WARD

Already Wednesday and Monday seems an age ago. My last thin slice of normality was sharing tea and croissant on the roof of Julian's car, parked in the sunshine in Guy's car park. We took photos like it was some crazy on-the-road holiday breakfast. If only. Too quick we said goodbye and then Luigi and I were swept up through the big circular moving doors into reception and made our way upstairs...

The day was long and painful. I had a picc line put into my left arm but the X-ray showed the tube had looped some where along my chest wall, so I had to have that removed and another one inserted into my right arm. 52cms it soft plastic tube snaking its way up through my arm to meet a central vein somewhere in my chest. Sorry for that detail for anyone squeamish. Arrived up on Samaritan ward at 4.30. Here an even more painful procedure of a bone marrow biopsy took place. Lots of swearing from me as a selection of needles and 'apple corers' were inserted. I did try to breath slow and deep, but was told I was going to hyper ventilate! Got to get this breathing rhythm right! The good thing about bone marrow stuff is once the procedure is finished the pain stops immediately, unlike my arms for which I had 'stereo' pain for nearly two days. Monday finished with a couple of chemo injections into my stomach. Small fry in comparison to all the other stuff.

Yesterday was a strange. I slept almost all day. Hugely exhausted with everything. I think it's just the reality of being back here in hospital hitting home. The smell that leaks into my nostrils, the sounds that invade my ears and my vision limited mostly to the four walls of my room. There is a window from which I can see a huge swath of south east london tower blocks and housing estates. Beyond those I can see the crystal palace mast but that is too close to home and makes me sad and homesick tinged. I try to divert myself by listening to the Olympics on the radio. They say gold medals should be won today... Back soon. tch