| Jess's Party - A Celebration of her life |
[May. 27th, 2007|04:05 pm] |
Jess, as you know, loved a party. Long ago she said that what she wanted most by way of a rememberance was a big get together of all her friends and family.
On the evening of Friday 22 June there will be a party to celebrate Jess's life.
We will start by sharing memories of Jess and her life and then party to Shooglenifty (who in their first beginnings as Swamp Trash played at our wedding) .
There will be a buffet and bar.
So that we can work out numbers please email as soon as possible to jessica.k.barrow@googlemail.com if you would like to come along.
We will then send you out final details of times and venue.
We have all been really touched by all the cards and messages of good will and look forward to seeing you.
If there are other friends of Jess who you think would like to know about this please let them know.
Gordon |
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| The last days |
[May. 19th, 2007|07:54 pm] |
I'm a new voice on Jess's blog. I'm Harriet, Jess's sister. She asked me to write the final pages. She's a hard act to follow.
Jess died on Thursday 17 May around 11 am. She was in Gordon's arms with Mum holding her hand. She had drifted out of consciousness on Wednesday night.
Last weekend was the first time I had really seen her ready to go. " I'm tired Harry," she said on Saturday. " I hope the boys finish the extension". She had seen her fantastically supportive oncologist Catriona McLean on Friday - and they had agreed that she was too frail to cope with any further chemo. She was frustrated at not being in command of her body. Katie and Fi visited on Sunday for Scrabble - she was damned if she was going to give up on being in command of her mind.
Monday was a beautiful day - tired - but happy. Jess relished taking Fi and me for a walk up and down North Queensferry's steepest wheelchair pushes - to the North harbour where I had never been before. We reminisced about the wonderful sound of wind in the rigging of yachts. A shared childhood memory.
On Tuesday Alasdair collected Mum from Ballachulish. "I really want to see Mum. But I don't want any of this deathbed nonsense" Jess said.
Wednesday was peaceful but drifting. The morphine was moved on to a drip as too hard to take orally. Jess slept a lot. She said "Hello Anna" to her sister in Australia. She spent time with James and Calum. Mum sketched her (and I found the sketch Mum had done of Jess at 5 days old). Gordon nursed her as tenderly as he has done from the start.
On Thursday evening she left North Queensferry in a beautiful bamboo eco-coffin with the undertaker walking slowly in front of the hearse with top hat in hand. She would have loved it.
There will be a private family burial in an oak and birch bluebell wood that rolls down to a river.
In a few weeks time, for the many friends and family who have known and loved her, there will be a gathering to celebrate her life. Please keep looking at the blog for details.
And from me, and Gordon and the family, - thank you for all the huge good wishes and support from so many.
Harriet
If you want to do anything -
Next weekend Fi and her Studio Art School team run the Edinburgh marathon for Macmillan - and mostly for Jess. Support them at www.justgiving/studioartschool.com
Jess also wanted to thank Maggie's Centres for all their support.
But she said as well, often, how very lucky she is with her huge network of friends and family and support and relative affluence. So she wanted me particularly to mention Scottish International Relief whose support is lifesaving for so many all over the world. |
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| Feeling Great |
[May. 5th, 2007|04:24 pm] |
I'm feeling great having enjoyed a beautiful sunny day with Harriet, Rona, and Sue. We started with great plans for a trip to Culross for a picnic, but evntually, after a a welcoming cup of tea at the flat, and what was meant to be a brief tour of the extension, we decided to have our our picnic in our garden, when the sun shone, and we became lazy sunbathers enjoying the brief lack of wind, and imagining how great it will be when th esun ronn inn dinaihed, (this is meant to say: 'and when the sun room is finished' which isn't quite what the message says. The drugs and my rubbish typing put paid to all that)
I've recently had another stay in hospital, this time to drain yet more fluid from my belly to reduce the discomfort. This time they managed to drain eight and a half litres of fluid from me, leaving me lighter and more comfortable. I am now clad almost entirely in maternity clothes and try really hard to dress up as much as possible, enjoying all the wildest jewellery and dangliest earrings I possess, taking the extra time I have to use up all my make-up. It's fun.
Morphine is a strange drug, sometimes have no effect on me at all, and other times making me very dopy and talking nonsense. Sometimes I have a visual image of a full plastic hoola hoop, draped in words that trail off and come out completely wrong. It can be very entertaining. If this blog is nonsense, please forgive me. It also makes it much longer to write the blog.
With love to my dear friends... |
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| The advantages of hospital |
[Apr. 20th, 2007|09:26 pm] |
Home - what a glorious place to be! I've just spent ten days in hospital, and when you get out the familiar and homely seem the most important things in the world. And fresh air on your face, the colour of the sky, and having space to walk around.
Although hospital can feel a bit prison-like, this time I was not such a reluctant visitor. I'd gone in because I had a high temperature, but then they discovered that my white blood cell count had dropped dramatically, to a level that I would find it difficult to fight off any infection. So they put me in 'protective isolation', which seemed to mean a room of my own (great), and my visitors having to wear disposable aprons and latex gloves (amusing), and a generally higher level of infection control (reassuring). I was pumped full of powerful antibiotics (medical Domestos, according to one medic), and lots of fluid - which has replaced the five litres that had been drained off me only weeks before. My drum belly was back. I can't say it's ever really been away, but it was softer, smaller, and more comfortable than before. I am going to have to learn to live with it, although before I left, they drained off a litre, and it is more comfortable. The days passed with a regular supply of visitors, endless doctor/nurse visits, Sudoku, newspapers, radio, and a lot of sleeping. And at the weekend a glorious Scrabble picnic with Harriet and Katie, getting in the way of the nurses, and melting in the excessive heat of the south-facing room. If you remember, it was a lovely sunny week. For some.
I am officially recovered now. My white blood cells back to normal, and my temperature doing what it normally does. All of this was a side effect of the chemotherapy, which as it goes on becomes more debilitating. It has been effective so far in stopping the growth of the tumours - and in keeping me alive. I have now had four cycles of this type of chemo, and I have to decide whether to carry on, and have another two cycles - six is a normal course of treatment - or stop treatment, either permanently or temporarily. This would definitely improve my quality of life, but the tumours will probably start growing again.
I think I'm going for the quality of life option. This is the most beautiful time of year, when everything is bursting into life again, and it should be enjoyed to the full. So we are planning lots of different things to do - not necessarily grand gestures, but simply getting out and about, visiting friends - or having friends to visit, and maybe the occasional outing further afield. All depending, of course, on the ready availability of disabled loos.
It is time now to bid you goodnight. Gordon will wheel me back to our little flat, with its comfy bed, fully functioning bathroom, and accessible loo. |
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| Picnics and sunshine |
[Apr. 5th, 2007|08:03 pm] |
I have a new wheelchair!
It has been a glorious day today - warm spring sunshine bringing out the daffodils that adorn parks and kerbs for miles around. I started the day pretty miserably - the day after chemo I was tired and nauseous, and struggled to take my pills. But sleep is a great healer, and by midday Harriet and Alasdair's appearance to take us out was very welcome, and I was feeling much better. We tested the new wheelchair around the grounds of Aberdour Castle, only hindered by the odd patch of gravel. The secret for crossing these, by the way, is to tip the wheelchair onto its two back wheels, leaving the poor occupant horizontal and squealing. The squealing is essential.
Back then, to our house, to see the progress with the extension. We no longer have a bathroom. What was our bathroom is now a roofless pile of rubble and ex-plumbing. The mildewed cream tiles are a thing of the past, along with the stained bath and the ancient boiler. Only the new Ikea wash-hand basin has been saved from destruction, in the hope of a new role somewhere in the future. It will not be going in our swanky new bathroom, currently consisting of a concrete floor and one breezeblock wall. This is also the state of the new office and utility room. This is major progress - only a couple of weeks ago it was a pile of rubble and bedrock.
A day later: I'm lying in a hospital bed, feeling rather strange and very hot, with my arm attached to a bag full of blood, peering out at the blazing sunshine and the grounds of the Western General Hospital. I'm getting a relatively routine blood transfusion, as I'm anaemic. I've slept for hours, and will sleep again when I get home, under a pile of throws etc in our little borrowed flat. It is sleepy time just now, when my body craves sleep and the power of intelligent conversation has fled, and if I get a few compos mentis minutes to update the journal I'm lucky. However it is quite a good time for visitors, as long as they don't mind my dopey, sleepy, state. I expect it to last a good few days. Tomorrow, Good Friday, I shall indulge myself to the full, so that I can be as awake as possible for our planned Easter Day picnic and barbecue. The weather forecast is holding up, and the new wheelchair has proved its worth. Now all I need is an old fashioned bath chair, in which I can stretch out and sleep.
Happy Easter all. |
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| (no subject) |
[Mar. 30th, 2007|10:42 am] |
The difficulty with keeping a blog is keeing it up-to-date, especially when life gets in the way!
It is a beautiful day today, the evening sun trying to break through the evening mist. Not long ago we were driving through it, on the way back from a search for doors and windows for our extension. It was an urgent mission because the walls have now reached window-height. The digging and laying of foundations has happened with remarkable and exciting speed. We are having fun (and a little bit of domestic strife) choosing all sorts of bits and pieces from bathroom fittings to french windows. But nonetheless it is all going well.
We have also been having fun in other ways. Fiona B and I held a funding-raising party at the Maggie's Centre, and as well as having a brilliant time we raised around £1,500. Not bad for a party.
The next few days I slept the sleep of the dead. (By the way, I don't avoid language that might seem to be insensitive.) Chemotherapy had been the previous Monday, the usual social event in Ward 1 in the Western General Hospital, where the WRVS tea-ladies (and men) coming round and spreading cheer and chocolate biscuits. The sleep was wonderful, and I emerged from this hibernation bleary eyed, slightly refreshed, and a bit frustrated at having wasted my few days. By all accounts this is only going to get worse as time goes by - the later sessions of chemotherapy get steadily worse.
... I hate computers! I have just lost everything I have written over the last hour, and anyone who this has ever happened to will understand the frustration. So on that note, I'm going to stop blog-writing for the time being and come back to more updating later. We're about to leave for a weekend in Ballachulish in one of my mother's chalets, where we will hopefully relax and unwind.
But a quick health cath-up, which I know I've promised a few people. I'm feeling fine (my dear Aus sister Anna said she'd never known how many definitions of the word 'fine' there were until I got ill) The oedema on my legs has improved dramatically, and I can now wear my ordinary socks and trainers. A major improvement! They have drained my stomach - a big needle and two days in hospital and they drained off five litres of fluid, and left me a stone lighter.
The next round of chemo starts on Tuesday, after which I expect to feel fairly miserable and tired (not 'fine', perhaps) for a couple of weeks, and then I should feel better. My oncologist is happy with the way my treatment is progressing, and feels that at the very least it's keeping my tumours at bay.
That's quite enough for me just now. |
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| Escape! |
[Feb. 25th, 2007|05:42 pm] |
Since that driech Fife morning there have been many more, and some beautiful, sunny crisp mornings that herald spring. My poor garden has been neglected for a year in anticipation of it becoming a building site when the extention gets built (oh the triumph of hope over experience), but has also become dog playground and exercise yard - great for practising digging. But nature has a way. In amongst the weeds, holes and dog poo little snowdrops are showing their bright white faces, valiantly surviving against all odds. Spring is also bringing other bulbs. The daffodils are doing their very best - the tall green advance guard of spring. It will be a little while until they flower under our wind-stunted apple and pear tree, but I know if I were to pick them and bring them into the house, they'd flower within days and last as long. I think I'll get more pleasure from them where they are. Soon there will be crocuses - not many - followed by an ever dependable display of scarlet tulips. For a very brief period the approach to my house will be at its scarlet best.
However this year will be different. The waiting will be over, and the garden will finally become a building site. We have permission to get started on the extention! Certain things will have to be agreed with Historic Scotland as the build goes on, but we can get on with the major drain and construction work. Well, not us exactly, but contractors, builders, architects, etc. There is a possibility that there might be enough of them to get it more or less finished within weeks, and there are rumours it will all start tomorrow...even although I've watched enough of those doomed property shows to know better. I can't quite believe it's happening!
I will be watching it all from the comfort of my new throne. Courtesy of Fife Council SW department, I have a very comfortable brown (browns and blues are the colours of my front room) velour riser and recliner armchair. At the touch of a button I am standing upright, while my cushions and throws tumble off around me.
They have also provided me with a special addition to my loo, so that I don't get stuck and can stand up. This is why it is so important... (readers of a delicate nature may wish to skip the next bit)
While Anna was with us, we had a very funny couple of episodes getting off loos. I can manage at home, but when I'm out, things can be a very different matter. One of my major problems has always been very weak thighs, which refuse to take my weight, and this seems to be getting worse, not better.
We decided to meet our mum for lunch in a pub in Strathyre, a sort of half way meeting place between Fife and Ballachulish. I foolishly decided not to stay in my wheelchair, so hauled myself into the little built-in pub bench seat, next to the sadly un-roaring log fire. It had a three-inch high arm, presumably to help contain some of their more inebriated customers. At the end of the meal I wanted to do what we all want to do. Easier said than done. First of all I created mayhem simply by trying to stand up. We had to move several bits of furniture, while I hauled myself up and nearly fell over. Then the loo. It wasn't until I'd had my pee that I realised I couldn't stand up, and there was nothing for me to haul myself up with. I was well and truly stuck. Thankfully Anna appeared to see if I was ok - answered with a rather plaintive 'no...' She then stood guard while Gordon came and hauled me up.
The same thing happened two days later at the Cramond Inn. Except this time I went in without my bag - and my phone - and any other means of contacting the outside world...it was then I realised I couldn't reach the door to unlock it, so not only was I stuck on the loo, I was locked in. Thankfully when Anna finally arrived for her rescue mission, it was one of those locks that can be unlocked from the outside with a two-pence-piece.
Getting stuck in loos has become a bit of a theme - it happened again this morning at Peebles Hydro, and this time Fi and Gordon were my rescue team.
Delicate readers can come back now.
We were at Peebles Hydro for a birthday treat weekend for Fi - and a major thank you to Harriet and Alasdair for all they have done for me too. It was a lovely and luxurious weekend with fabulous food - which I very nearly was not allowed to go to.
Earlier last week Dr McLean phoned me with very good news. It seems my liver is definitely shrinking, and there is clear evidence that the chemo is working. Although my belly is the same size, (if not bigger - there are fewer and fewer clothes I can get into), it feels as if there is more fluid, and less solid liver. Certain things seem better, or stable - pain being one of them. My legs are still erratically swollen, but I like to imagine that I can, every now and again, see what my legs used to look like. However good news always comes tempered. I was anaemic, and needed a blood transfusion fairly urgently. Dr McLean booked me in for Thursday, and I duly went to Ward 1 at the Western General hospital. Such things of course are rarely straightforward, and after waiting most of the day to get the right sort of blood, it became apparent that if I was to get it, I would need to be admitted as an inpatient and have the transfusion overnight. I really wanted to feel well for our special weekend away, so happily agreed.
Once admitted, things started to go a bit wrong. First of all, I had a very high temperature. I'm quite used to this, as your liver is your temperature regulator, and I know my own body and illness well enough by now to know that this particular type of temperature was not due to an infection. However the doctors quite rightly can't affort to make such assumptions, so they promptly put me on IV antibiotics. Next were my oxygen levels - which were far lower than they should be. This would explain the shortness of breath and wheezing. Before I knew it, I was hooked up to an oxygen mask, and various concerned medics gathering round my bed and scratching their heads.
The night was spent solving one problem and finding another, or so it seemed. By late evening, the blood was no longer a problem and I was duly hooked up, the final unit finished in the morning. They'd also decided that IV antibiotics weren't necessary, and I didn't have an infection. But I was still having problems breathing, and the doctors were still very worried about my oxygen levels - me too, if I'm honest. However I'd put so much into this weekend, and really wanted it to happen for all the people who have done so much, that the thought of not going was inconceivable. By morning the doctors, including my own Dr McLean, very reluctantly let me go, but only if I promised to phone the hospital if there were any changes, or if I was worried about anything at all. Finally they agreed to let me go.
It is now Sunday night, and we are at home, Gordon and Calum curled up in front of our telly, James and his girlfriend curled up together in front of a DVD at her house, and me curled up (sort of) in front of the nice warm glow of a computer screen. I'm waiting for the hospital hit squad to arrive at the door any minute, but over this last month I've successfully escaped from several loos and a hospital. A different type of escape skill than Houdini, but nevertheless...
And my liver feels like it's shrinking. |
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| Whales |
[Feb. 12th, 2007|12:41 pm] |
My legs may be seized up, and I may look like a beached whale, but this morning I saw the real thing. Much excitement yesterday in the house and on the pier as the killer whales came to play, and they're back again today!
Gordon managed to find a spot in our bedroom where I could prop myself with the binoculars without being too uncomfortable, and my patience was rewarded. Of course they don't leap around as if in a Disney film, but unmistakably there it was, the black fin and rounded back of something much larger than a porpoise, curving gracefully out of the water, glimpsed through the mist of a driech Fife morning.
Not many people get the opportunity to see wild killer whales from their bedroom windows! |
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| Count our blessings |
[Feb. 8th, 2007|04:58 pm] |
www.justgiving/studioartschool.com
Thank you so much to all of you who have been so generous - the running team have been overwhelmed. Arlene, Michael and John have been slogging it away at the gym, while Fi has been waiting for a dodgy knee and back to recover before she puts them under more strain!
I, meanwhile, have been exercising in sympathy. Mostly by asking Gordon to make sure I have all the essentials next to me before I get settled down for a hard day doing nothing. My essentials include lots of water, mobile and house phones, relevant remote controls, preferably a newspaper, and a sudoku book. And a pen and pencil. And my knees and feet tucked up, with cushions in all the right places. Gordon is probably getting more exercise than me - while poor Shuna thinks we're all a bit pathetic. She's forgotten she's recovering too - we had her spayed ten days ago. She's still on a rest cure.
I had a lovely farewell from my Scottish Exective colleagues a couple of weeks ago, with the gift of a beautiful pendant, and lunch with my closest colleagues. It has been a great year working with them all, and I have learnt so much. I'm really sorry to be leaving them.
My dear mother has been visiting too - she's been great company this last week. She's almost as wobbly as me, which has meant Gordon has had to be doubly careful when we're both out together! I have been out for an occasional birl in the wheelchair, although not as many as I would have liked. On Monday we went whale-watching, in the vain hope we might spot some of our friendly local killer whales, who are tucking into our local seal population. But today was more typical - just as the sun breaks out we think we'll get ourselves sorted to make the most of it, and then the cloud and rain come and laugh at our optimism - and the cosy fire and another cup of tea seem more welcome! I've also had a brief and unexpected visit from my two oldest schoolfriends - we've known each other since we were 12, and since then have exchanged Christmas cards and promised to visit every year. Ruth works very hard with her brother Magnus, helping to run the charity Scottish International Relief, which, amongst many other things, provides school meals for children in Malawi.
My health has been up and down. I've suffered some side effects from the first dose of chemo (you don't want to know...), but not too serious, and I think the chemo's having an impact. Primarily, of course I've been tired. My legs (or tree trunks - would have made good table legs - so glad G got the table finished) are less and less mobile. Gordon and the boys are very well trained at lifting them onto footstools. Getting upstairs is getting even more like climbing the Himalayas, which I only attempt once a day. The promise of an upstairs bathroom is still a promise - the plumber having come down with a succession of lurgies. But instead I have an antique bedpan and a patient husband for middle of the night emergencies. My belly is still vast. Only one person has asked me when I'm due, but luckily she was in the cancer outpatient ward, so could handle the news ok.
On Tuesday I had my second dose of chemo, in the smart new surroundings of the refurbished Ward 1. And today I feel better. (I'm not sure the refurbished ward had much to do with it.) My belly is getting softer, and my legs might be shrinking - in width, not height, I hope. Tomorrow I'm going into hospital, hopefully only for a few hours, to get some of the fluid drained off my stomach if they think they can do it safely. It should make me more comfortable which will be a blessing.
My hair seems to be taking its time to come out, but to save finding hair all over the house, I decided to attack it with the clippers. I've always wanted to do it so, and apart from the cold it was quite satisfying. I'm enjoying the various scarves and hats I have, although they come off when I get too hot. I've also found the perfect hairbrush for someone losing 5mm long hair - those clothes de-fluffers seem to be very good at getting out the remaining hair that seems to get everywhere. I know that when it starts to grow back in again, every strand will be precious.
Next week I have another unexpected visit - my sister Anna is flying from Australia to see me for a few days! I am really looking forward to seeing her.
I am being very well looked after, medically and socially, by friends and family far and wide, and by kind thoughts, prayers and wishes from all sides. When I think about all the horrors that go on in the world, whether it is Malawian children going hungry, or Iraqi civilians risking their lives to buy a loaf of bread, or people in this country living and dying unloved and uncared for, I know I am truly lucky. |
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| Being selfish |
[Jan. 28th, 2007|01:47 pm] |
www.justgiving.com/studioartschool
As the scope of my world shrinks, certain things in life take different priorities, and different perspectives, in the way that most people cannot begin to imagine. The world of work, with its full-on stress, challenges and rewards, seems like a million miles away and a complete irrelevance. I don't miss it, yet still appreciate the lack of stress. My daily routine is not what it was, without much routine to it. I still wake early, trying to get my belly comfortable (any woman who has been pregnant will recognise that feeling!), and working out how swollen my legs and ankles are. This morning I found something I hadn't seen for a while - those bony bits that stick out either side above your feet? I think they're called ankles - it's been a while since I've been able to find mine! but a propped up mattress at the foot end has worked miracles! Quite made my day. I was cheered immensely another morning by the gift of a very nice pair of (whisper it, please) ...maternity... trousers. They are comfortable and look good - what more could a woman want?
Gordon and I usually have a leisurely breakfast of boiled eggs, a treasured oasis of quiet time together. If I have great plans for the day, my body usually tells me to sleep and do nothing else. The best laid plans... On good days I do more - see friends, get out for a birl in the wheelchair, maybe do some paperwork. But my energy is limited, and I am becoming a bit of an expert on daytime house makeover/antique dealing/home in the sun type tv programmes. I'm not proud. But no Aussie soap operas! Morpine is a great drug at keeping the pain at bay, but it also does weird things to my brain - I talk far too fast (no change there) but mix up my words and come out with even madder 'good ideas' than usual. It also makes me drop off to sleep without warning, and usually only for a moment or too. It can be quite disconcerting for anyone with me, especially as I still manage to keep up with the conversation. I do find the limited energy difficult to manage, as there is no way of predicting how I'm going to feel day-to-day, and I need to make sure I rest enough.
The wheelchair has proved a godsend. I can't walk far at the moment, which means I miss the bracing pleasures of an outdoor winter walk (strangely don't miss traipsing round a supermarket!), so being able to go out with the family and the dog along suitably paved paths on a crisp winter's day truly lifts my spirits. Thank you, Victorians, for Edinburgh's promenades.
I am a very strange shape at the moment. Pregnant belly, tree-trunk legs, scrawny arms, and short hair. Yes, that time has come. Yesterday I realised my hair was coming out in handfuls, so dear Fi did an emergency hair cut - probably one of the shortest lived ever - and my hair is now around two inches long, and showing its true colours! I like the grey shining through. I don't know when the rest will fall out, but probably very soon. I think I might need to find a cosy and pretty hat for the coldest days, and then play around with the bald/scarf/wig options.
I saw my oncologist on Friday. I feel very lucky to have her, fighting on my behalf, and she's a great emotional support too. She's not alone - my GP has been fantastic, and I have great support from everyone else involved in my care, including my Macmillan nurse (please see above. Thank you to everyone who has been so generous already with their donations, the running team were overwhelmed. I'm still awaiting their latest training update - I will post it as soon as I get it).
We talked about my treatment. She couldn't yet say anything definitive about how effective the chemo was being, but we both felt that my liver could well have shrunk. Fingers crossed. At the moment the main thing is to monitor the treatment and see how effective/toxic it is, keeping on the right side of the kill/cure divide. We talked too about the timescales I'm facing. I've known for some time, since the the last lot of chemo stopped being effective, that my options were really limited, and that it is only a matter of time. Statistics are strange things: 'lies, damn lies, and statistics'; 'median does not mean me'; but however you interpret or manipulate stats to suit you, they do have significance. My disease is progressing in a peculiar way - responding initially very well to chemo, and then taking on a mind of its own and going into a strop - 'I'll show you and your positive attitude - look how big I can grow in a fortnight! Yah boo sucks!' (trust me to have a stroppy tumour). It is not a predictable tumour and will not respond to treatment predictably either. However despite all of these things, the truth is that I will be lucky to make it as far as the summer.
It is these hard truths that make you have a good hard look at priorities. I can stop worrying about the officialdom that is continuing to blight the extension planning application. Does it really matter that I haven't got round to sorting the various piles of junk that have accumulated in the attic? Someone else can sort out my loft. My filing system will remain a mess. It can become someone else's problem.
My priorities are simple. I want to get pleasure from every single day. I want to appreciate and enjoy our family routine. I want to help the boys with their homework and their exams - and be shouty, bossy mum as usual. I want to have fun with my boys. I want to have my regular breakfasts with Gordon. I want to be selfish - about my time and my pleasures. I want to go out and relish the feel of sun, wind and rain on my skin. I want to go out in the wheelchair, and I want to continue to keep the pain under control. I want to eat well. I want to laugh with my friends and family. I want to laugh! A lot. I want to go to my brother's farmhouse in France. I want to have happy social evenings with friends. As far as is possible, I want happy normality. |
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| From gloom to running joy! |
[Jan. 17th, 2007|07:05 pm] |
Remember this: http://www.justgiving.com/studioartschool
While doors open and close of their own accord, other people are working hard to open doors left, right and centre. My dear sister Anna in Australia is using all of her time trying to track down whatever 'next step' alternatives are available, and there are various possibilities on the horizon - once they become a bit more within sight of our telescopes, I will let you know. And my friends are opening a door of running joy!
I had chemo on Monday - a very different experience from before. The chemo itself was without immediate side effects, unlike the other one that left me freezing cold, with pins and needles. This is called Irinotecin, and could leave me tired (yes), nauseous (not really), with diarrhoea (not yet), and with my hair falling out (not for a couple more cycles, so I've got another few weeks of showing my roots!). I went into hospital for it and got a blood transfusion at the same time - which didn't finish till late in the evening. If anyone ever says to you 'you can stay in hospital overnight if you want, or you could go home?' just remember, however comfortable the bed or overwhelming the need to sleep, take the going home option. Infinitely preferable to a hot and disturbed night, wondering whether turning over in bed is going to wake your fellow patients (who have all taken sleeping pills anyway), being unable to reach anything you want, and finally waking at 5am wondering how you are going to entertain yourself until breakfast arrives at 8am. And then having to wait for two hours before being discharged. Stupid me.
But the sense of relief at finally getting some treatment, even if it wasn't what I had been hoping for, was fantastic. I spent the rest of the day feeling euphoric. Or it might have been the morphine.
But back to the running joy, no drugs involved. I have had so many offers of help over the last few months, and people have been very generous with their time and kindness, and in walking my poor little dog! This is an opportunity to help in other ways. My dear friend Fi who has been such a rock for me in so many ways, while also building an amazing new business, is now making an unbelieveable sacrifice (teenage sports fanatics look out)... but I will hand over to friend Michael who will finish the tale:
"When I answered the office ‘phone on Friday, I heard two distinct sounds; the first the spokesperson from MacMillan Cancer Trust telling me that our team had been accepted to run on their behalf and the second, the sound of my own foot arching ever upwards to lodge itself firmly and fairly in my mouth. The fog of memory cleared as the bright, young voice told me a training pack was on its way and we’d better get started as the marathon is only a couple of months away.
"It had seemed like such a good idea at the time; enter the Studio Art School as a team in the 2007 Edinburgh Marathon.
"Not since Hannibal had suggested an Alpine shortcut involving some elephants, had anybody had such a ridiculous notion.
"Face facts; the Studio Art School team comprises four people who have a collective age of 183. The Marathon is 26.2 miles long.
"Paula Radcliffe runs marathons; we run an online art business; sitting down.
"Coupled with these, the marathon must be the only sporting event which is named after the place where the first person to complete it, promptly died. Why are we celebrating that?
"And who are we few, we happy few, we band of brothers? Well two of them are burdz for a start....
Arlene “Man the Pump” Stewart
Arlene is a Lycra junky whose sinuous form is a feature of Loanhead Leisure Centre, Midlothian’s Stadium of Light. Often seen bedecked in clingy nylon and a head band, Loanhead’s answer to Olivia Newton John can be found sniffing out Body Pump and Step classes. A veteran of several west coast half marathons, Arlene swapped the staccato patios of the Glasgow close for the nasal twang of the streets of New York and the 2003 Marathon, completing the gruelling event despite the lure of shopping emporia such as Armani, Tiffany, Asprey’s and The Foot Locker en route.
Fiona “Fort William” Crosbie
A native of the north, Fiona suffers from a common Hie’land condition, a genetic defect resulting from generations of traversing lumpy ground – one leg shorter than the other. Already unable, like many Highlanders, to run without the presence of at least one sheep in front, Fiona has to fight against this inbred tendency to run round and round in a circle before disappearing up her own Lost Valley.
Displaying the aerodynamic properties of a scone, Fiona is training hard for this event. Already she has taken the batteries out of the TV remote, forcing her to jog back and forth ‘twix TV and settee between ER and Desperate Housewives.
John “Posh Boy” Watson
A late developer in the running stakes, a career in management had restricted John’s previous exercise regime to passing the buck, swinging the lead and dodging the issue. Freed from the corporate yolk, John has approached his new lifestyle with an evangelical zeal seldom seen since Walter Smith took over as National Team Coach.....
A member at the exclusive Holmes Place, where would be applicants have to demonstrate their prowess by lifting a huge chunk of cash out of their wallet and into Richard Branson’s account, John’s fitness programme has become legendary. From possessing the muscle tone of that associated with undercooked pastry, John’s exercise schedule has resulted in his being considered as principle body double in “Shrek 3”.
Michael “Memories” Stewart.
Ten years of running in marathons and half marathons have given Michael the confidence and aura of self assurance that masks a total lack of ability and a current fitness level which is on a par with any major league darts player. As a man who now considers dressing himself and jogging from the car to the vending machine at the gym, a thorough work out, Michael is embarking on a strict training schedule that uses the Critical Path Analysis method as its core constituant; start at the end and working backwards, plan your strategy. Consequently, he is hoping for cancellation of the marathon. This involves much practise with a mirror with a range of expressions going from the stoic but delusional, “Well, too bad, I’d only have come second anyway...” to a full blown Gwyneth Paltrow/Paula Radcliffe – complete with optional emergency stop and squat.
In the meantime, the Studio Art School team will post regular updates on our various training schedules in the lead up to the Edinburgh Marathon. On Jess’s advice we have got a ‘Just Giving’ web page, which you can visit at: http://www.justgiving.com/studioartschool. We’re aiming to raise at least £750 for the MacMillan Trust and hope that you’ll be able to help. Failing that, if you’re out and about in the Lothians over the next couple of months and see some sweating bodies on the wrong side of middle age pounding the streets and muttering incoherently, offer a few kind words of encouragement."
I am amazingly impressed that this mad four have decided to do this, and will be giving them my whole-hearted support. MacMillan too have been great in helping me - they started by sending me lots of useful information, and now I have my own personal MacMillan nurse, who is there for me whenever I want her - she's visited, and has been at the other end of the phone when I've got stupid anxious questions. The donation process is very easy. I hope you will be able to support my four friends, who are doing their best to open doors for me and others like me.
Here's to running joy! |
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| The silent doors |
[Jan. 12th, 2007|03:54 pm] |
Every day doors quietly close around us and behind us. We usually don't hear them, or are even aware of them, but they are there anyway. The first one I was aware of was, I think, during the Moscow Olympics - yes, going back bit now: it was when Nadia Cominechy (spelling....???) won medals at the age of about 13, and I was a few years older. I realised that the door of opportunity to becoming a teenage gymnast had quietly closed behind me. I have to confess I don't think I was ever going to be a teenage gymnast, or any other kind of sporting person, but I was at that glorious stage of life when anything seems possible, and all doors are open to you, so the shock of realising that some of the doors were already beginning to close was quite profound.
As the years go by you begin to realise that more and more doors are closing to you. I will never be an astronaut (an early career option), nor will I have more children. I won't ever climb Mount Everest (again, never a likely contender), nor will I follow that brilliant career as an eminent artist. As we grow older, everyone of us realises that certain things have passed us by irretrieveably, while others have stayed with us and made us who we are.
We have our own doors that have opened to us, and we've chosen to go through. There are doors and opportunities I've taken that have given me a wonderful life. I've got two wonderful sons, and a fantastic husband. I've been incredibly lucky in the work that I've done, and I've had a wonderful working life. I have had opportunities and experiences that have been denied many other people, and I've been hugely fortunate to have enjoyed, mostly, the work that I do. I may not have followed a conventional career, but I like to think I've done my bit to make a difference. I have amazing friends and family who lighten my life on a daily basis. In talking about closing doors, I have nothing to complain about - they open as often as they close.
As time goes on, for all of us, doors continue to close, as others continue to open. We realise we realise that it's unlikely we'll ever set up that idyllic French B&B with chickens and ducks and small children running around. For me however, the closing of the doors is accelerating. It is unlikely now I will ever see the Taj Mahal, or travel the Trans Siberian Express. I will not get round to writing that best-selling novel. Or worst selling novel. I watch the property programmes on the TV, and know it is extremely unlikely we will ever build our eco-friendly house - and I probably won't ever see the famous/infamous extension to this house. I should get to see an upstairs bathroom, and with luck a bit of landscaping to the garden in the spring.
I read the Sunday supplements, and know that I won't get to go back to the tropics or the Caribbean (but how lucky am I that I've already been?), nor will I ever holiday on an American ranch (a long held secret desire), and neither will I do any other of the wonderful holidays and trips advertised. I will probably struggle even to get back to Europe for a few days. I look at the fashion and beauty pages, and think 'how important is this?' and know that I will never again be able to even pretend that these clothes have any relevance to me (but how many other women feel the same? I'm not alone!)
Silently, silently, doors are closing all around me. Another door closed for me today - I won't be getting onto the drugs trial, as my swollen liver needs more urgent attention. It is now the size of a large rugby ball, and makes me look very pregnant. It is only because I haven't been on public transport that I haven't been offered a seat on a train or bus! Becoming this large this quickly is not comfortable, and I am very grateful for the pain-killing powers of morphine, which has helped me through this last week. My oncologist has decided, reluctantly, that I need to start the next round of chemotherapy as soon as possible, probably on Tuesday or Wednesday next week. It should reduce the size of the tumours in my liver, which should make me more comfortable. I know that it will not give me long-lasting results, but I think that stage was reached a while ago - ameliorated always by the hope of something else that might bring a miracle. The miracle door is closing too. The way my disease is progressing - quite aggressively - means that my timescale for finding miracles, or open doors, is significantly truncated.
But doors never cease to open too. Maybe not the doors I would really like to open, but instead opportunities for fun and enjoyment - a very important part of living! Today my brother-in-law, while on a fleeting 24 hour visit, took Gordon and I for lunch at Gleaneagles - fish and chips overlooking a windswept, wet, and deserted golf course. On Thursday I went to the Turkish Baths in Portobello, with Fi, Fiona, Arlene, and Harriet; to plan the joint party that Fiona and I have long talked about to celebrate life, and thank all our friends for their love and support they've given us both. We're thinking early March - watch this space!
There are doors of opportunity always open to us, and we ignore them at our peril - we never know when they will close. But the opportunity for fun and enjoyment in particular should never be passed up! |
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| Boring and brief |
[Jan. 9th, 2007|04:48 pm] |
Today's posting is brief and boring - but hopefully practical, particularly for those of you who don't have my email address. This blog isn't always the best format for one-to-one communication, and I'm also in the process of changing my email address. My current account is weighed down by spam, and I've yet to find a way of tackling it effectively, so I've defected to a new email account. However I am ever more paranoid about that hostile cyber world out there, however useful it is, so please forgive me for writing my email address in code, just in case there are evil email-address-auto-searching-robots out there, just so more people can be offered drugs they don't want, membership of online casinos they don't want, or cheap rolex watches they don't want. It is: jessica dot k dot barrow at googlemail dot com. The code is simple, it's written as you would say it, not write it.
This is a boring and brief entry, but I feel another more esoteric blog coming on, and a bit more updating, so watch this space! |
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| Happy New Year! |
[Jan. 3rd, 2007|11:35 am] |
Happy New Year dear friends!
It's been a while since I last posted a message, and it has been on my to-do list for a fortnight. Now the festivities have died down a little, I have a quiet moment, and it has finally got to the top of the list. We had a wonderful Christmas, all seated round a very beautiful, solid beech kitchen table. Yes, against all odds, Gordon succeeded in creating this wonderful work of art in time for Christmas Day. It still needs some more time-consuming finishing, but it looked fabulous and did not stop us feasting on roast goose and Mum's home-made stuffing, smoked salmon, sticky toffee pudding and Christmas pudding, delectable cheeses, and all manner of other lovely goodies. Thanks to the wonders of steroids, my appetite did not let me down and I made the most of it!
Why is it that week between Christmas and New Year always just vanishes? On Boxing Day, as is our family tradition, the fit and healthy ones went for a bracing boxing day walk - much appreciated by the dogs - Shuna, and Beccasine, my mum's ancient dog more akin to a hearth rug on legs than anything canine. Mum and I stayed at home, making soup, chatting, and sorting out Christmas debris. The other days passed in that wonderful period of non-time, where normal life is a distant memory, where friends and good food come and go, and time is irrelevant.
New Year was a joy - I should have posted to the blog beforehand, to tell you all about 'Haunted Hogmanay' (Scotland only, sadly), a wonderful half hour animated feature about ghost-hunting in the underground ancient streets beneath Edinburgh's Old Town, on BBC1 in the early evening. I hope some of you saw it. It was made by friend Cameron, and afterwards we went to the after-show party and met up with old friends, then back to Portobello for the bells and a social evening (night?), until 4am - a respectable hour.
It's been wonderful, if a little odd - for the past fortnight I've looked around five months pregnant - more like seven at the moment - due mostly, I think, to a swollen liver and some fluid retention. I've had various trips to various doctors, and am now rattling with all the pills I'm on to deal with the liver, fluid retention, pain, anaemia, and some of the side-effects of the drugs. My wardrobe has become a little limited - maternity clothes are not something you keep in the back of the cupboard 'just in case' - and I certainly wouldn't want to wear the clothes I wore 16 years ago when last pregnant! But I have a collection of stretchy dresses which are proving a godsend.
I still get tired, and my energy levels are such that walking the dog has become almost impossible, but with a bit of nagging the men in my life have stepped into the breach so Shuna is still getting her walk. It's just as well - every morning she whines, yawns loudly, climbs on your lap (yes, still a lap-dog), jumps up every time you go near a door, or paces the kitchen floor until she gets her walk. (I realised she gets more excited about the prospect of her daily walk than my children do about Christmas once a year!) And my family have been amazing - although in theory we were the hosts for Christmas, I think about the only thing I did was lay our beautiful table. Everyone else did all the work, while I lay around like Lady Muck, being waited on hand and foot, and occassionally, I confess, giving bossy instructions.
My GP has been a life-saver - she has phoned me every day over the last four days, just to see how I'm doing, and it has been very reassuring as the symptoms have changed. Tommorrow I see my oncologist again (and she was on the phone over the holidays too - wonderful people), when I will hopefully find out what more can be done to at least get my stomach back down to size. I'm also expecting to find out more about the next stage of treatment, which I hope will start sooner rather than later.
But my health problems have been only a minor backdrop to a wonderful festive period, which was everything it should be - happy times, good food and drink, family, friends, and laughter. Exactly the Christmas and New Year I wanted.
I hope you too had a good Christmas and New Year, and I hope that 2007 brings you much happiness. |
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| (no subject) |
[Dec. 15th, 2006|12:51 pm] |
Thank goodness it has finally stopped raining. For a week we have had the rain hammering off the windows, keeping us awake at night and filling the handily place yellow glass vase in the sitting room. Gordon has been waiting for the weather to break so he can embark on yet another whim - mine again, of course - this time making a new kitchen table in time for Christmas.
The bathroom is now looking nicer with a lovely new Ikea wash hand basin, and no more horrible yellow marble-effect formica. The next job is the table. I've wanted a long kitchen table to replace the round one we have for a long time - it's a much more practical shape for our kitchen. Of course I then decide I want it in time for our family Christmas - and being an indulgent sort, dear Gordon agrees. We have hunted in various places - antique shops, Ikea, etc, but the antique shops were prohibitively expensive, and Ikea the usual opposite - and neither had exactly what we wanted. So Gordon said he'd make one. In hunting for the right timber we found an amazing sawmill, which specialises in Scottish timber, and is a not-for-profit company which supports local sustainable woodland. And so we indulged, in some beautiful Scottish 'flame' beech.
We now have some very solid timber indeed. Four inch square posts for legs, two inch thick slabs of timber for the top. It will be very beautiful when finished, and very sturdy. It will double up nicely as a raft when global warming, or this deluge, gets the better of us. I think it would probably work quite well as a fall-out shelter too, if ever this warring world tips over into nuclear holocaust. As I write, Gordon is out in the garage beginning to cut it to size - although he did have to spend around an hour beforehand mopping up the floods that had come from the rain.
I think it is some kind of nesting instinct I have, wanting to make everything perfect, and no longer willing to tolerate the half-finished approach to our home that I've been comfortably living with for years. We still have no news on our long awaiting planning application - if it doesn't come soon I may have to resort to playing the sympathy card, and saying I need it because of my illness.
I still haven't been well, and have not moved far from my cosy sitting room in the last couple of weeks. The weather hasn't helped. I did take the dog out once or twice, but we came back soaking and exhausted - well, I was exhausted, she wanted another walk half an hour later! Yesterday, when it finally stopped raining, I had another scan and an appointment with the oncologist. It wasn't good news - the tumours have grown, and I have two new ones in my lungs. And I found out the reason for not feeling well - despite all my positive imaging, it was what I had feared deep down - my cancerous liver. After initially working very well, the chemo had stopped being effective.
However there is always that essential: hope. There is a new clinical trial due to start in the new year, which I may well be eligible for. It will combine the second line chemotherapy drug (Irenotecin) with some other, newer drugs, to see if they make it more effective. So hopefully I will get onto the trial in January - if not, I will go onto Irenotecin on its own. The boys have their own ways of dealing with the news: Calum decided that he wanted to go and find out where the trial doctors live, and threaten them with a machete if they didn't put me on the trial. That's love for you. Although I'm not sure how angry teenagers come into the clinical criteria they use. James just gave me a hug, and we watched rubbish telly together. I still don't think they've tidied their bedrooms, which would make me really happy.
The next priority is to get ready for Christmas, tidy bedrooms and all. There will be nine of us for Christmas dinner - with sister Harriet and family, and my mum. Gordon wants a life-size cardboard cutout of 18-year old niece Rachel, who will be celebrating Christmas US-style in Georgia, before heading off to New York for New Year. She is having a ball living the American soap opera dream. I am so envious - not so much of the American soap opera dream (I think I'd find it more of a nightmare) but of that time in life when the whole world stretches out before you, ripe with opportunity and adventure.
Meanwhile I am excited about the thought of a beautiful new, solid beech, lovingly hand-made kitchen table; with friends and family gathered around. What could be better at Christmas? |
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| Keep on the sunny side of life |
[Dec. 5th, 2006|11:52 am] |
It's been a stormy week. The wind has been howling round the house, and where we live the wind gains extra volume as it storms through the structure of the Forth Bridge, with its own unique roar. The rain has come too, battering off our windows with fury, disturbing our sleep and making any trip outside a wild adventure. Despite our best endeavours, our house has always leaked. There is one particular leak that now finds its way out through a purpose-drilled hole above one of our sitting room windowsills, into a purposefully placed beautiful glass vase. Each summer Gordon goes up a ladder, and hunts for the possible source of the leak, sealing up every nook and cranny he can find, and each year we pass the first rain storm without incident, and think the problem's been solved, and then each year, the yellow glass vase is needed again. This time it was quiet for days - weeks even - until one evening we heard the unmistakeable sound of water pouring into the vase. It must have been gathering in a pool somewhere. One day we will find out where. But as I write, although the window next to my computer with its lovely view to the bridge is splattered with sea spray and in dire need of a scrub; the wind has dropped and the sun is shining.
It's been a stormy week for me too. I continued to feel unwell after my trip to hospital, albeit with a brief recovery on Tuesday allowing me to do a (probably pointless, although I did get my email inbox back down to size) half day at work. Wednesday was chemo day, but I still wasn't feeling good, and my temperature was still fluctuating, so they decided to hold off the chemo for a few days to give me time to recover, with the help of yet more powerful antibiotics. So I was packed off home, after they'd taken yet more samples of my bodily fluids. If they tell me I'm anaemic, they've only themselves to blame! And some bad news - my CEA count, from blood taken three weeks ago, had risen slightly, to 1410. I was disappointed. At home I continued to feel unwell, and the antibiotics seemed to make no difference to the temperature fluctuations.
I still managed to get out and about a bit - and on a mad whim decided I couldn't live with our bathroom wash basin another moment longer. I've always hated it, but have tolerated it and our hideous bathroom for the last six years, in the belief that we would shortly be demolishing the lot and building a beautiful extension complete with new modern bathroom. But the yellow, 'marble effect' formica remains, along with the grotty sink. My patience finally went, partly because I want a nicer bathroom by Christmas. So Gordon and I went on a hunt for a cheap, pleasing sink - and despite his loathing of all things IKEA, we ended up with one from there - largely because it was significantly cheaper and more pleasing than anything else we'd looked at. Today he plans to install it, and get rid of the remaining nasty yellow formica. I live in hope that, fate being what it is, this will finally trigger the long awaiting planning permission for the extension.
Yesterday I was due to go back for chemo. I turned up at the hospital, still not feeling 100%, but ready for more maurauding invaders. I was greeted by Maria, the lovely doctor who serves the chemo wards, saying she needed to speak to me. She took me by the hand and told me that my CEA count, from blood taken last week, had risen back up to its starting levels of around 5,000. She hugged me tightly, and we wept together.
My oncologist came to see me. She too is lovely, and took time to explain what they think is wrong. For whatever reason, and I think it is not uncommon at this stage, the chemo appears to have stopped working. The symptoms I have been experiencing: loss of appetite, nausea, tiredness, discomfort just below my ribcage; all possibly relate to the cancer. She is also concerned that the other two new lesions, which they spotted on the last scan, and which may have been fatty deposits, might possibly be different types of tumour - but it's very unlikely. The long and the short of it is that I will stop the current chemo, they'll refer me for another scan, and probably put me on a new type of chemo. If I do go onto it, I will probably lose my hair - but hey! no more leg waxing! no more shaving! And no more bad hair days!
I'm still hopeful too about the possibilities offered by thermal ablation or microwave therapy, especially once they've finished with the chemo. Our first Christmas card arrived the other day, with a press cutting about the microwave therapy - apparently this particular pioneering surgeon has been getting a 90% success rate on people with terminal liver cancer! So that's an avenue I need to pursue. There is a possiblity that the high CEA levels are caused by the tumours breaking up - I have this vision that all the pavement pounding in Florence sent the cancer into panic mode, and the tumours simply decided to give up the ghost - and that my symptoms are caused by the toxic onslaught my liver's been taking over the last months, combined with having to deal with dying tumours. And I'm now feeling much better.
In the words of the song,
'There's a dark and a troubled side to life,
But there's a bright and a sunny side too,
Though you meet with the darkness and strife,
The sunny side you also may view.
'Keep on the sunny side, always on the sunny side, keep on the sunny side of life,
It will help us every day,
It will brighten all the way,
If we keep on the sunny side of life.'
Here's wishing you a sunny and storm-free Advent. |
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| A green parrot told me... |
[Nov. 27th, 2006|09:08 pm] |
I'm going to live till I'm 85. It's official. I know this because a green parrot (or possibly a parakeet) told me so in Florence. On payment of a euro, it carefully picked out a little folded square of paper, containing my fortune. This was during a fantastic three days in Florence with Fi, revisiting the places we'd been when we were 17, and marvelling at our naivety all those years ago. We remembered needing to buy string, and armed only with a phrase book not a dictionary, could only work out the Italian for 'small rope'. We wandered down the street where we lived for a month, and where, after an evening out with two typical Italian men, we were begged for 'just one leetle kissee!' They got short shrift. We visited the cloisters of the San Lorenzo church, where Michelangelo had worked, and where we had studied silk screen printing before heading off to art college.
And we visited the markets - apparently the largest permanent street market in Italy. It doesn't seem to have changed much - still selling beautiful lined leather gloves, Murano glass trinkets, and fabulous leather goods of all sorts. We shopped till we dropped, stopping only for rich, thick cups of cioccolatta con panna - hot chocolate so thick you had to eat it with a spoon, topped with thick swirls of whipped cream. Thank goodness we were only there for three days. We had both come back at least a size larger when we'd stayed for a month, supplementing our hot chocolate with fantastic icecream, and daily slices of pizza. Some things have changed - the old covered market has gone up-market, now selling gourmet olive oil, salt (yes, really - black volcanic salt, brown smoked salt, and aromatic herby salt), sweet balsamic vinegar, and huge chunks of parmesan. The wall of one stall was hung with many whole parma hams, the protruding bone end covered in gold foil. We remembered it the way it was before - the downstairs sold meat -whole cows and pigs hanging, part butchered, with their entrails laid out on marble slabs. The smell was horrendous, and we always escaped to the upstairs part which sold huge piles of fresh and delicious blood oranges, and fruit and veg of all varieties. The fruit and veg are still there, if on a smaller number of stalls. But it was the wrong season for blood oranges.
We climbed to the top of the Duomo, something we hadn't done before, up increasingly narrow and claustrophobic stone steps, until we reached the top and panoramic views of the beautiful city. We wandered down to the Ponte Vecchio in the evening, and took photos of it as it faded from one vibrant colour to another - a welcome change from standard flood-lighting. As we wandered across it, listening to a busking guitarist and soaking up the atmosphere (yes, it was November, and yes, the streets were busy), we peered into each of the famous jewellery stalls, all locked up with ancient wooden shutters and massive locks, through little peepholes like some bizarre peepshow.
On Saturday we lugged our suitcases (and an extra one to carry all the extra shopping) onto the train to Pisa, plane to Prestwick, and then trains home. But we have done a good bit of Christmas shopping, and brought home bottles of fresh pressed peppery olive oil, and big chunks of fresh parmesan.
When I got home, I collapsed into bed, and woke up feeling exhausted. Not surprising really. But then by chance I decided to take my temperature - which was high. It's one of the things I have to look out for and report urgently, so after a couple of phonecalls and a visit to the GP out of hours centre in Dunfermline, I found myself in hospital connected up to IV antibiotics and being subjected to every test under the sun, (or so it seemed) including being woken up at half past two in the morning and wheeled down for a chest x-ray. The porter, being a Celtic fan, was looking forward to the Hibs/Celtic match, after a snatched few hours sleep. Gordon too had been really looking forward to the match, and had bought his ticket long ago. When they finally decided that there was nothing much wrong with me, and let me out the following morning, I discovered that dear G had given away his much treasured ticket so that he could be at home with me. Apart from exhaustion, which seems to be an almost permanent state of affairs these days, there really isn't much wrong with me.
I now feel like a pincushion after all the needles they stuck in me, (and must be verging on anaemic because of all the blood they've taken), but I've managed to save my left hand for chemo, which starts again on Wednesday. But it's all in a good cause - helping me live till 85. Not a bad innings, all things considered. |
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| Eat cabbage |
[Nov. 16th, 2006|12:35 pm] |
There's been a competition going on in our house to see who is the most ill. Technically of course I win, but on symptoms alone Gordon was making the running for a bit, with Calum following close behind. They are both now better - Calum from a cold and asthma (despite being completely better, Calum tried to get a letter excusing him from PE classes today - cruel, unsympathetic mother said no), and poor Gordon from an attack of shingles - very painful and itchy. He was banned from the hospital last week when I went for chemo, so I spent the day reading, doing a bit of work, and chatting to my fellow patients. As treatment goes on, I'm finding myself getting more tired and prone to exhaustion, but I'm doing my best to stop it interfering too much with every day life. My walks with Shuna are becoming more of an effort, but the therapuetic effect of fresh air, exercise and laughing at the dog are more than compensation.
Shuna supplements her diet with grass, sand, and wool. She daintily nibbles the grass as we're out for our walk, picking the most tender stems with all the finesse of a true connoisseur. The sand is accidental - she seems to ingest several mouthfuls when playing our daily game of 'fetch' on the beach. She's a quick learner - I have to first find the stick and throw it as far as I can (not very far - I never was very good at sport), and she will do the right doggy thing and fetch it, often tossing it in the air and catching it for extra fun. Yet when we first got her, she didn't understand the concept of needing to bring it back to be thrown again, just expecting us to materialise an endless supply of sticks. But she still manages to get sand everywhere. The wool comes from a crocheted blanket from her bed, which she has systematically enhanced with yet more holes, as she's chewed her way through it. The blanket, which I have no idea how or when we acquired it, is a masterpiece - the product of hours of skilled work by someone who was obviously brilliant at crochet, but with no colour sense whatsover. A gaudy confection of truly hideous colours, it has finally found its rightful place on the dog's bed, until the holes become larger than the blanket itself.
My diet too has been under scrutiny. I am sure that what you put into your body must make a difference to your health, but I am also sceptical about the many quacks who are out there, and the vast numbers of people who prey on our fears by offering miracle cures, often at great expense and personal sacrifice. Too many of the suggestions seem to be about denial, and making moral judgements about the way you live your life. It's as if we need to be punished for being ill, and if we fail to cure ourselves by failing to follow a particular strict and punishing regime, we have only ourselves to blame. So I approach such things with caution - one of my pleasures in life is good food, and I want to stay alive to enjoy life, not to be punished! But I know there must be wise advice out there, backed by real evidence, not the conviction of some self-styled diet guru. The herbalist I saw last week, a long-established medical herbalist recommended by doctors I respect, did not send me away with any herbal remedies - in fact, she suggested I avoid milk thistle (apparently it has a protective effect on liver cells, not necessarily helpful when the aim of the chemo is to kill, albeit diseased, liver cells) - but instead advised me simply to eat lots more green leafy vegetables, and turmeric - apparently very good for the digestive system. So I'm enjoying the season of greens and kale. Delicious stir-fried with garlic, ginger, and turmeric!
In the interests of enjoying good food (which will include greens of some sort), and maintaining postive mental health, I am now going out for lunch with friends. No grass, sand or wool on the menu for me. |
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| Celebrating with a fresh orange and soda... |
[Nov. 2nd, 2006|08:34 pm] |
I didn't realise how worried I was about today until after the appointment: sitting in the Old Chain Pier, indulging in a pub lunch and gazing out at a fishing boat dropping creels in the Forth, when I suddenly felt as if a big weight had been lifted off my shoulders.
It was all quite straightforward and predictable. I'm not quite sure what I was expecting, but I certainly thought I'd feel upset and anxious - but my oncologist had got the message that I didn't need to be reminded of the 'realistic' perspective, as she put it, but needed instead the optimistic perspective. I think I was worried that at the worst, they might tell me that I wasn't responding to chemo. However I am - the tumours are shrinking, and the CEA count is down at 1082! It's not all good news - there are a couple of new 'areas of concern' on my liver, which might be new tumours. If that's the case, then the cancer is developing and it is seriously bad news, but it is contradictory to the progress of the other tumours and the plummeting antigen levels. It is more likely that the chemo drug I am on, oxilaplatin, is causing fatty deposits to build up in the liver. This drug has only been in use for around three years, and the doctor said the surgeons have started grumbling about the state of the livers the oncologists send them to operate on! I'm not sure if it's permanent damage, but it doesn't seem to affect liver function. I have decided that the new things on my liver are fatty deposits, and therefore have cause to celebrate, which I did in fine style with a pub lunch with Fi and Gordon, followed by a good bit of retail therapy.
Tomorrow I'm going to visit a herbalist, and see what she can do to strengthen my liver. I am being very good to it (apart from the hideous poisons I have injected and ingested) and am not drinking at all - one of the most life-inhibiting side effects is that I seem to have completely gone off drink. No longer the glorious Friday evening pleasures of an ice-cold gin and tonic. No more sinking into the warm welcoming arms of a rich red wine. Now it's back to the limited soft drink menu at a bar - what shall it be, a fresh orange and soda, or a ginger beer? Mmmm - tricky choice. They ask me about my quality of life when I'm at the hospital - is the pain too much? Am I too tired to do anything? How am I coping with nausea and hair loss? (I am not in pain, only sometimes tired, very occassionally nauseous, and the chemo I'm on will not make my hair fall out.) But no questions about how you're coping without being able to enjoy the warm sensation of that first drink at the end of a long week coursing through your veins!
But the best therapy of all is knowing that my tumours are shrinking. I'll beat them yet. |
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| On Ilkley Moor... |
[Oct. 28th, 2006|06:17 pm] |
Calum has just gone out to the Halloween Bands night, wrapped in assorted bandages, including an eye dressing wrapped dramatically around his head with his customary black hat pulled down on top of it. He's dressed up as a car accident victim - a costume he pulled together at the last minute, from the assorted contents of our chaotic first aid drawer. James and his friends have a Halloween disco later in the week, and they have decided to dress up as the Village People - and they have spend a week perfecting their costumes. James is going as the builder - it simply meant raiding his dad's wardrobe and tool bag, and buying a stick-on moustache. He couldn't afford the stick-on hairy chest, so will be raiding the old dressing up box for something that he can adapt. Meanwhile he's off to meet his girlfriend. They've been apart for a whole week, so are suffering from extreme separation anxiety, and have probably forgotten what each other looks like.
Chemo has been doing its job this last week. The usual pins and needles, particularly when I come into contact with anything cold, and more tiredness than usual. Last weekend we had a lovely break in Keighley, thanks to the generosity of Fi and Malc's friends, who lent us all their dog friendly house while they were on holiday. We walked on Ilkley Moor, ate curry, visited Bradford, and played charades - a Crosbie/Russell/Barrow tradition from our many October holidays together. Calum mimed 'On Ilkley Moor Baht'at' by sticking his fingers in his ears and pointing to me - I can't think why. It can't possibly have been to do with my wonderful rendition of the old folk song in the car on the way down...
We rushed back from Keighley in time for me to go to a meeting, but chemo tiredness caught up with me, and I collapsed in an exhausted heap. The exhaustion lasted for three days, during which time the GP and the district nurse came to visit, to poke and prod and listen and take blood: thankfully all the tests came back fine, and I was given a clean bill of health to carry on with the drugs. And I'm feeling much better now - back to work on Friday which was good, and I hope useful. It's very difficult to do any real meaningful work when you don't know whether you're going to be there or not - it's just a matter of picking up a task and doing it in the time you have. My work colleagues have been fantastic - I have been given amazing support.
On Thursday I had my CT scan. You sit for an hour beforehand, drinking a litre of liquorice-tasting liquid (I hate licquorice), then, desperate for a wee and wearing the dreaded hospital gown, you're put on a table (bench? stretcher?), another liquid injected into your hand, and passed through what can only be described as a talking giant polo mint. This is the really important scan. It will be the one that shows whether or not the chemo is working, and how well. I get the results next Thursday, when I see the oncologist again. I am trying not to hope too hard that it will show that the small tumours have disappeared, and they may be able to operate after all. Instead I'm trying to expect very little - to brace myself for bad news. But I think unless the news is exceptional, I will feel miserable anyway. There's nothing like visiting the cancer centre to be reminded of the harsh reality you're trying to ignore. However I will take in the information I have about other surgical interventions, and see if they might be available - it would be good to know there are other options. And on Friday I have an appointment with a herbalist, to find out about milk thistle, in the hope that it might be the miracle cure. |
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