Thursday, 3 December 2009

Smiles always follow tears.........

And my smiles came quicker than I thought they would. The wonderful, encouraging messages from you guys, after my surgery being put back to the 16th December, have lifted my spirits - thank you from the bottom of my heart.

I said it was for a reason (I didn't know what reason, though) but I'd like to think that a possible reason was this: today I saved a life. The life of a little, scared bird. Picture the scene - I was sweeping my kitchen floor (I know how to live the high life!) and one of my 3 (yes, 3!!) Jack Russell terriers was whining. I looked up and saw her staring intently at the log burner, and then I heard a frantic tapping at the glass. I peered in and saw a tiny sparrow, frantically trying to get out and flying at the glass door in desperation. I just managed to get my hand in and gently clasp it, but it wriggled free and flew to the window, fluttering helplessly against the glass.

'Don't panic!', I kept muttering under my breath - me, that is, not the bird. I opened the window but it just didn't seem to understand and kept missing the opening, so I closed one curtain and managed to guide it down to the window ledge. All the while my heart was pounding - it was as if its feelings of terror where being directly wired to me. Finally, I managed to catch it and when I stuck my hand out and opened my fingers, it flew out and into the trees across the lane.

I cried then, with relief at freeing the bird and, well, just for everything. All of my emotions were focussed on setting the bird free but they mirrored the panic and desperation in my own heart.

But then, through my tears, I started to smile. 'Yes!' I had done it - I had saved its life. Just a little bird, you might say, but it represented so much more. If my operation was still going ahead tomorrow, we would have already left today and that bird would have died, trapped in a log burner for several days.

I was meant to be here today - I know it. That bird's fight for life stirred overwhelming emotion in me. A recognition of being 'trapped', out of control and needing someone to set me free from this. Symbolic, don't you think?xx

A bad day.

Fed up and feel sick. My surgery has been postponed from 4th Dec to 16th December. Was so ready mentally and now I have to wait another 2 weeks. I need an ICU bed on standby and they are full at the Brompton this week - the 'panel' had a meeting and decided I wasn't high up enough on the priority list and so I have to wait. This has already been one of the longest weeks of my life.

The irrational part of my brain is terrified it will grow or spread in the next 2 weeks. I know I'm being a stupid cow -bear with me, I'll get over it!

Thursday, 26 November 2009

Here we go.....

Tuesday was a good day, bringing the very best of news: the cancer hasn't spread. It is adenocarcinoma, non small cell lung cancer in its early stages. I met with my specialist cancer nurse, Michael (who is amazing), and the surgeon, Mr Jordan, who is also amazing. After reviewing my PET scan, the surgeon was keen to offer surgery and stressed that this was good, as not everyone is suitable. He told me how it would be: 2 chest drains, central line, catheter, cannulas and an epidural morphine pump; painful, exhausting and hard to breathe. That was on top of the 10% mortality risk. The colour drained from my face and I locked eyes with Jimmy as we both felt horror at what would come if I chose surgery. But the decision was not yet made as he wanted the radiologists to see my scan first, because there was an alternative, and then he would call me on Thursday for my answer.

The alternative was radio frequency ablation (RAF); a much 'simpler' procedure of inserting a needle directly into the tumour and blasting the cancerous cells, plus some extra around the outside, to make sure. A walk in the park, by comparison. But there isn't really that much information about the long-term prognosis with this radical treatment. It sounds almost too good to be true but I do know it has worked, it's just whether it would work for me. Could I risk it? Would it work or leave me vulnerable to the cancer returning and spreading to other parts of my body?

We drove ourselves mad on Wednesday; talking, researching, saying "what if", until we were blue in the face. At bed-time we fell into bed, mentally exhausted, and still hadn't reached a decision, but we slept the deepest sleep since my diagnosis. When Jimmy brought me my morning cup of tea, he sat next to me with such sadness in his eyes and told me that he loved me. He told me he was scared I might die on the table. He told me he was scared that RFA wouldn't work. And he told me that he couldn't help me make the decision because it was happening to my body and he didn't want to see me suffer from an operation when the RFA might possibly work, but that he was scared the RFA wouldn't work and then it might be too late. I hugged him close and said "I know" and we cried.

Mum rang to tell me she loved me and the text messages started to stream in from my friends. No-one wanting to say "go for surgery" because they knew what it would involve and that it would be me, not them, having to do it. I made up my mind and changed it at least 8 times before I got dressed. And then there were my friends on Purplecoo - offering their usual strength and support, along with some sound non-biased advice.

We agreed to wait and see what the phone call would bring, and prayed the decision would be taken out of my hands. My prayers were answered for the second time this week: the first when I prayed it had not spread and this time when the surgeon rang to tell me that the radiologist felt surgery was a better option for me. He felt that RFA could be a "fall back" treatment for the future but should not be my primary treatment, as there was a "better" solution. Good enough for me, thank you.

My surgeon sounded relieved when I said that I was happy to go ahead. He laughed when I told him not to let me down, and promised that he would not. He's one of the best, I know, and I have to let him do his job - not easy for bossy old me, who likes to organise everything!

Before I knew it, my nurse was back on the phone with a date - 4th December. A week tomorrow. This will either be the longest or shortest week of my life, as I get myself ready for what lies ahead. I'll let you know what it was when I come home................. xx

Monday, 23 November 2009

Getting ready to fight......

How to start? I think, deep down, you know, don't you? My recent feelings of living on automatic pilot – that of seeing the world from a distance, hovering on the sidelines and watching as everyone else just gets on with it; living but not quite fully. My worst fears have been confirmed – I do have lung cancer. I don't want this blog to become morose and just a diary of cancer – it is going to be my partner on this journey of downs and ups and I am determined that the ups will win.

On the 10th November I had my CT guided needle biopsy. As expected, my lung collapsed and I had to stay in overnight but was discharged the following afternoon. Back home, I carried on as normal – well, as normal as you can when you just want those results. Like yesterday.

Maybe I did a bit too much but on Monday 16th November, I got back from shopping with sharp chest pains and I could hardly breathe. I rang my GP who called an ambulance and the next thing I knew I was in Gloucester Royal having a chest drain fitted. Nightmare. Absolute flippin' painful nightmare, but the paramedics were cute and knew how to make a girl smile - laughing was too painful, which I found out twice and had to ask them to stop being so nice.

Later, I was safely ensconced in ACU (acute care unit) where my pain was managed with morphine, until my lung started to re-inflate (which was painful in itself). The next morning I was much better and transferred to an ordinary ward for the next 2 days until all the leaked air had been released.

Of course, now I had missed my appointment at the Brompton for my biopsy results and badgered the doctors at Gloucester until they found out for me. To their credit, they were amazing, considering the fact that I wasn't normally one of their patients and the news they had was so bad. I was glad they told me there – if I had gone to the Brompton I would have been alone and had to travel back from London on the train.

Since they discharged me, things just haven't stopped. My family and friends have rallied round and we have sobbed, cuddled and even found the odd laugh. They will get me through this – I can't bear the thought of leaving them and I will fight this.

The battle lines are drawn now and the first one is tomorrow (Tuesday 24 November) when I go for my PET scan to see if it has spread to anywhere else. If it hasn't, I am meeting the surgeon in the afternoon and we will set out the way forward for surgery. If it has, things are another story and will no doubt involve chemotherapy and radiotherapy, and that will be discussed with the rest of the medical team tomorrow too.

So, for the next few hours, I will remain in limbo but I know that my feet aren't going to be touching the ground all too soon, as things begin to happen. The lull before the storm. The advice that has been most consistent is “take it a day at a time”. Simple, true but so very hard to do.

Monday, 5 October 2009

Autumnal ramblings

I'm warning you now – this blog is going to be a jumble of thoughts and musings! My mind is leap-frogging from one thing to the next but is totally reflective of the way I'm feeling right now.

Last month, I went to the Brompton Hospital in London for my routine check-up and had a CT scan of my lungs to”update your records”. Nothing to worry about, I was told, it was just that it had been over 5 years since the last one. I haven't the energy to bore you with the details but the upshot is that I have some marks showing on my lungs and they don't know what they are. More scar tissue from the fibrosis caused by my Scleroderma? A pneumonia-like infection? TB? …..... and the dreaded question: cancer?

Further tests were quickly carried out: a bronchoscopy with lung wash and biopsy. The results: inconclusive. Negative for TB. Negative, currently, for cancer which should make me jump up and down with elation but, as they can't say what it IS, they won't rule it out. I'm popping antibiotics and steroids and have to wait until 10 November for a repeat scan. If it's still there, I shall have to have a needle biopsy, which carries the risk of deflating the lung – great. Limbo....... fear and dread and, above all, a kind of numbness.

My usual exuberance as my favourite season, Autumn, arrives is not there. I'm still doing my normal things: hedgerow foraging, preserving, gathering in the wood, lighting the Rayburn, putting throws over chair backs and changing cushions, but there's something missing this year. I'm doing it all on auto pilot and it makes me feel sad.

Normally, there's nothing better than picking the last of the blackberries in the autumn sunshine, listening to the buzzards calling over head and smiling as the robin lands on a nearby branch to make sure I leave some for him, cocking his head at me to show his button black, beady eye. I talk to him and he chirrups back at me before he flies off. The woodpecker flashes by – a streak of green and red and then all falls still, save for the gentle chomping of the cows over the hedge as they tug at the grass. They are Gloucester cows and belong to my neighbour, Charles Martell, who milks them for his cheese. He is most famous for Stinking Bishop, but I prefer the single Gloucester and Hereford Hop – and so does my fridge!

Returning home, the kettle is gently steaming on the Rayburn and I make tea as I sort out containers to freeze this last picking of blackberries. My cupboards already hold jars of jam – damson, strawberry, blackcurrant and plum, alongside kilner jars of chutney which will be ready at Christmas. Christmas: it seems a long time away in my mind at the moment but, in reality, is just weeks away. By then, I'll know, won't I? One way or the other. Part of me is terrified at finding out, the other part just wants to get on with it. Is ignorance really bliss, when it stops you “feeling” properly; when it numbs your senses?

The logs are chopped and stacked in the porches as well as the log store. This is the first year we have been properly self sufficient in wood and we are so excited. We have a proper “tree coppicing timetable” now and our next session will be in November. The oak, ash, hazel, holly, plum and apple trees are all ear-marked for attention and the pruned limbs will provide next year's wood. And, of course, nothing beats the smell and sight of wood smoke curling up from your chimney and the anticipation of walking into a room with the fire or log burner on. We collected our first batch of sweet chestnuts from down the lane at the weekend – small and sweet, roasted over the fire and then the sound of cracking as J throws the shells onto the flames and all traces of our snack are gone.

Outside our bedroom window, the hawthorn berries are turning darker red – not yet their final ruby red colour - and each morning I watch as the birds dance along the branches. They haven't started eating them yet (they're not quite ready) but, when they are, I love to watch the blue tits hanging upside down as they pull a luscious berry into their beaks and gobble them down. The blackbirds love them too but they are too heavy to get at the ones on the end and, sometimes, they try to fly like they are treading water, hovering near the end of the branch to pull the last ones off. The finches (green, gold and chaffinch) love to eat the rose hips from the roses growing by the gate.

The other weekend, it was the monthly flea market held at the Malvern Three Counties Showground. We don't go every month but this time I came back with a gorgeous “granny blanket” - a bargain at just £12. It's huge and more than covers a double bed, but I use them over the backs of chairs and sofas for when the evenings get really chilly. I love to light the fire, make a mug of tea and curl up at the end of the day with a good book and a blanket over my lap, especially on those damp, misty days when all you want to do is retreat indoors. J bought some medals and military buttons and I also got a lovely old oak framed picture (I am going to change the actual picture inside) for £5 !!

This weekend, apart from the blackberry picking, I made lots of tomato and basil soup with the left over ripe tomatoes, and froze it down ready for warming lunches. Oh! And I made banana cake with the 2 dead bananas in my fruit bowl! My neighbour popped in to say “Hi” and commented that the smells were wafting down the lane from the open windows, making him so peckish he had to come and investigate! That's a first!

Until next time......... enjoy the autumn sunshine.xx

Monday, 14 September 2009

Rooks or crows?

Rooks or crows? Now there's a question I've never got round to answering. I grew up in Bournville, Birmingham, and used to love to listen to the nightly raucous pilgrimage of said birds as they returned to roost at night. As a child, it was a daily marking of time; getting ready for bed and the onset of darkness.

It's correct name is Bournville Village, designed and built by the Cadbury family for their workers at the chocolate factory in 1893. The estate was called Bournville after the nearby Bourn Brook and the French word “ville” for town. Originally, the estate consisted of a scattering of farmsteads and cottages, linked by winding country lanes, set in a rural area (then) to the south of Birmingham. The Cadbury brothers chose this area for their factory as it was regarded as being cleaner and healthier and gave ample room for expansion, as well as already having a railway station and canal.

The Cadbury family were Quakers and held their workers in high respect, providing homes in the village, with gardens large enough for fruit trees and vegetable patches. To this day, the gardens are considerably large and, although some are still rented from the Bournville Village Trust, many are now in private ownership. This was not the full extent of the Cadbury generosity: they paid high wages, pioneered pension schemes, joint works committees and offered a full staff medical service. They even provided holidays for the under-privileged in Cadbury owned holiday homes.

By the year 1900, the estate included 313 cottages and houses on 330 acres of land, and many more similar properties were built in the years leading up to the first world war. Bournville became a blueprint for many other model village estates around Britain. However, as George Cadbury was a Quaker, no public houses have ever been built in Bournville, although since the late 1940s there has been a licensed members' bar at Rowheath Pavilion.

The Cadbury concern for the health and fitness of their workforce, meant that park and recreation areas were key in the Bournville village plans. In the early 1920s, extensive open lands were purchased at Rowheath creating football and hockey pitches, as well as a grassed running track. George Cadbury designed the Rowheath Pavilion and it was built in accordance with his instructions, opening in July 1924. It served as the clubhouse and changing rooms for the sports playing fields, several bowling greens, fishing lake and an outdoor swimming Lido, a natural mineral spring forming the source for the lido's healthy waters. The Rowheath Pavilion itself, which still exists, was used for balls and dinners, and the whole area was free of charge to use by the Cadbury workers and their families. The lido was eventually closed in the 1970s after complaints of noise disturbance were made by residents of the newly built Oak Farm estate, coupled with new health and safety regulations. Cadbury's also built an indoor swimming baths on Bournville Lane, the Valley Pool boating lake and the picturesque cricket pitch next to the factory site, that was made famous as the picture on boxes of Milk Tray chocolates throughout the 1950s and 1960s.

The Bournville Village Trust was set up in 1900 to formally control the development of the estate, independently of George Cadbury, or the Cadbury company. It is a conservation area and, as such, there are strict guidelines for extension and modification of properties. A true village feel evolved, with a triangular village green, infant and junior schools, the School of Art and the Day Continuation School (originally intended for young Cadbury employees) plus a host of events such as fĂȘtes and dances are held. The carillon on top of the junior school and a Quaker meeting house are also beside the village green.

I went to both the infant and junior schools, attended Sunday School at St. Francis church, and used to run down the hill on Saturday mornings, when the carillon bells rang out for weddings, arriving breathlessly to see the bride and groom emerging from the church. Such warm and happy memories of a wonderful childhood spent in idyllic surroundings.

We lived in Acacia Road – all the roads were originally named after trees: there's Sycamore Road, Maple Road, Hawthorn Road, Mulberry Road........... Home was a 3 bedroomed, end of terrace cottage, with a Park-Ray coal fire in the kitchen and the ubiquitous “Sheila maid” airing rack, with pulley, above. There was an apple tree in the garden with the most amazing blossom and this was my den, high up amongst the branches, peeping at the world through the leaves. I had a sand pit, swing and gold fish pond, watched over by models of Snow White and the Seven Dwarfs (hand painted by me!). I loved to help on wash day and used to wait on the other side of the electric mangle to catch the clothes as they came through the other side. My room was a tiny single room overlooking the back garden – I still remember the floral wallpaper, the chest of drawers, single wardrobe and simple wooden chair with a rush seat. There was nothing more in the world I could have wished for and today my home has echoes of my memories, keeping those treasured times close.

Bournville has, of course, changed much since then, but the bones are still there. It has grown – it now contains over 7,500 homes on 1,000 acres of land, alongside 100 acres of parks and open spaces. It remains a popular residential area of Birmingham but I have moved on and my home is now well and truly in the countryside.

However, I still go to the dentist there and always get a familiar rush of warmth as I catch glimpses of “old Bournville”. The surgery is opposite the woods, which are full of bluebells in the Spring, and from the waiting room, I can see the path I used to skip along and my “secret” fairy tree. The last time I went, I ambled across, furtively looking over my shoulder to make sure no-one was watching. As I approached the tree, it was hard to see the little wishing well type hole in the trunk that I used to put a half pence piece in and make a wish to the fairies. But it was there; covered over with ivy and so obviously unknown to anyone else in the whole wide world. My secret place. I felt both glad and sad – glad that it was still mine, but then swiftly followed by sadness that no other little girl could feel the magic of the fairy tree. Cautiously, I prodded my finger into the hole – the adult in me squirming at what beasties might be lurking in the little pool of water. It was empty. No half pence pieces – the fairies must have taken them...........

It's those birds, though. Each evening I hear the same raucous noise as they head into the wood in the corner of the field at the bottom of my garden; a mob of black birds silhouetted against the darkening sky as they fly to the trees to roost. I picture my fairy tree in Bournville, just for a fleeting moment, standing at the edge of those far away woods, knowing the same noise is going on there, as it has for years and years. A noise so familiar from childhood through to the present day, and yet I still haven't decided if they are rooks or crows! Any suggestions gratefully appreciated!!

Monday, 27 July 2009

Getting back to living life

I started to write this blog so many times, in my head and on the computer. “Don't think – just write”, but the words wouldn't come out in the right order, and I pressed the back space key so many times, I nearly gave up. What's the point? It's been so long and so much has happened – too many things to catch up with.

But here I am, pounding the keys and fumbling with words, thoughts and emotions, with a few pictures thrown in, just for good measure.

Spring was a write off for us. We had three close bereavements in rapid succession – the culmination of an emotional roller coaster as I watched my friend, Carole, lose her battle with cancer. Then there was my uncle Peter, also a victim of cancer, quickly followed by my ex-father-in-law, Derek, as he finally gave up his brave fight with Parkinson's. I moved through Spring in a state of numbness, not feeling the same joy as new life burst forth all around me. What is it all about? This journey of life we are all travelling on: watching the seasons come and go; getting up, filling our day and going to bed; laughing, crying......

I was brought up Church of England, but following my parents' break up, when my Dad found the Jehovah's Witnesses, I have had a strange relationship with religion. I don't go to Church, except for weddings, funerals, harvest, Christenings – you know, the times most people make an appearance, but it doesn't mean I don't believe in God. For me, religion is a personal thing: I don't wear a label; I don't “belong” to a particular faith. My experiences of the affects of religion on a family have soured my belief in Church – not in God, but the Church bit, when mankind gets involved. Watching the goings on as the ladies do battle over alter flowers (C of E) and “Elders” (Jehovah's Witnesses) telling my Dad to shave his beard off because it gave the “wrong” impression to the outside world (unclean – can you believe that?), then listening to my Mum crying and pleading with Dad to stand up to them, after all, didn't Jesus wear a beard? The sound of him tapping the razor on the side of the bathroom sink will stay in my memory forever, as I watched the sparkle dim in my Mum's eyes. But that wasn't God's hand – it was men “interpreting” the Bible and its message, and that was when I pulled away.

So, my faith has become my own personal relationship with God, and this spring saw that sorely tested. As I watched the greening of the hedgerows, buds bursting forth and bulbs pushing through the earth, my usual joy and wonder was absent, as I grieved for people I loved. But this IS what it is all about, though, isn't it? The cycle of life, that continuous circle and my grief gradually turned into a heightened awareness that I had to get on and “live”.

And that is what I have been doing. I have been outside at every opportunity, working in my vegetable garden and nurturing my plants. I have started to sew again and resumed my voracious reading habit. Oh! And cooking – something I have always enjoyed, but now has become a passion. Jimmy has been chief tester as I have tried out new recipes on him and I have shopped locally for in-season produce, that I haven't grown myself, like a woman possessed. We have entertained as never before and I have hardly turned the computer on – that is a major achievement in itself!

Last week we went to Suffolk – just the two of us in a beautiful cottage between Edwardstone and Boxford (Grove Cottages).

The cottage was rustic rural at its best and each morning we were visited by a family of ducklings, with their mum. I fell in love with this county as we visited Flatford Mill, on through Manningtree to Mistley (Essex borderland), back towards Nayland, Polstead, Kersey (where the Witch finder General was filmed), up to Monks Eleigh, Needham Market, across to Framlingham, Woodbridge and Sutton Hoo and then on to the coast, where we explored Walberswick, Dunwich Heath, Westleton, Thorpeness, Aldeburgh and Orford.
The furthest west we went was to Lavenham and Long Melford, where we also visited Melford Hall. Wherever we went, we drove through picture perfect villages of pastel coloured, thatch roofed cottages, with village greens and duck ponds. I completely understand Suffolk Mum's choice of home county! All too soon it was time to come home, back to the reality of domestic routine – washing, ironing, cleaning the chickens out...............

But then, of course, as we drove home reflecting on our adventures in a previously unknown county to us, we turned the corner and the Malvern Hills came into view, as the sun was setting. My heart lifted, as they gently stood proud on the landscape and the warm feeling of home seeped into my bones. We finally turned into our lane and as we drove up the hill, our cottage stood quietly waiting for us. The dogs were going ballistic as they recognised the car engine sound and after a raucous greeting, accompanied by wet noses thrust into our hands and tails circling at 90 miles per hour, we collapsed with steaming mugs of tea, laid out in preparation on a tray by my Mum. We grinned at one another. There's nowhere quite like home, but we both agree that Suffolk comes a VERY close second!!