Well, the soft touch of Summer is here again and I once again find myself drawn to my super duper astronaut designed gravity defying garden chair (should there be commas in that?) which the family bought me for my birthday last year. To some, it appears to be quite a normal chair. But to me my chair is what a hammock is to a sailor - my refuge when the seas are rough and my rest when the skies are smooth and blue.
I really should be ashamed of myself for not updating my blog more regularly. Especially since, in moments when I am practising self delusion, I call myself a writer. But such is life. My husband chastises me for not leaving something of myself behind. He thinks I should write more so that some part of me will remain after I am gone. But I am not feeling particularly guilty. I will leave my shoe collection instead. That will surely take many years to dispose of and holds my imprint and my smell much better than words could.
Health wise things have been up and down - much like my hair which has develped the ability to defy gravity and greets me every morning in the mirror like a faded exclamation mark. After a really difficult time on chemo, and some pretty horrible infections over the Summer when an old wound refused to heal and I ended up sampling the care of different UK hospitals, I had started to pick up by the Autumn. But then I received more bad news. The cancer, which had been knocked back by the chemo, had started to grow again.
I was given the choice of an experimental drug or conventional chemotherapy. Being the sort of girl that wants to be first at everything I opted for the experimental drug and I was the third woman in the World to go onto Abiraterone. The doctors at the Marsden were really excited. They thought this might be a breakthrough drug for people like me. But after two months I learned that it had only been partially successful. While my bones were holding up well, other places were showing more cancer growth. So we made the decision to halt the trial and go back to conventional chemotherapy.
I was dreading it. All those hours sitting in the chemo chair while the poison drips slowly into your veins. The sickness, the hair loss, the fatigue. But actually this chemo has been OK. I have kept my hair, and my immune system is holding up so I don't have to be so worried that I am going to die of a cold every time somebody around me sneezes. I can even go swimming (if I could find my cossie). Early scans show that this conventional chemo drug is being effective, so let's hope that it continues to do its stuff for a long time yet. Certainly I feel good, and nobody who meets me for the first time has the slightest clue that I am actually quite seriously ill.
In fact, I don't behave at all like an ill person. I have been so busy - helping my eldest daughter learn how to drive, taking short breaks abroad, going out for meals and lots and lots of theatre. We have seen some brilliant productions - a magnificent Othello (NOT the Lenny Henry one), the Cirque du Soleil, a gothic production of Cinderella (too scary for one sensitive little girl that came with us), War Horse (we all cried) and other things I have forgotten. Next month we are off to see Sister Act, which is based on the film with Whoopie Goldberg (not the film with Julie Andrews). You might remember it features a gospel choir.
Which brings me onto singing. In the Autumn I joined the Rock Choir - a gospel type choir that sings rock, gospel and pop. It's got quite a reputation here in the South having performed at the local rock festival and other places. And it's reputation is growing - we were on the Paul O'Grady show last week and Breakfast TV the week before. There are currently five Rock Choirs who all learn and rehearse the same songs and then come together to perform. Next month we are doing something with the Band of the Royal Marines and there are plans for Glastonbury coming up. The woman who runs it plans to have Rock Choirs running all over the country in the next couple of years and is hoping that the Rock Choir might sing at the opening ceremony of the Olympics in 2012. Oh, how I hope to be there.
I did singing of a different type on Saturday when I went to see Chelsea play in the FA cup semi final at Wembley. I was so proud to remember the words of Blue is the Colour and sung and bounced around for the best part of ninety minutes. The noise and the atmosphere was fantastic. Back in the 1970s we were all Chelsea fans (well, all seven of us living in our house were). We all had knitted bobble hats and scarves and my dad and uncle Fred even painted the cabin cruiser they had built in Chelsea colours. We were there, gathered around the TV set and cheering on Osgood and Bonetti, when Chelsea won the FA cup final in 1970. Years later, I spent many a freezing Sunday afternoon standing in the Chelsea shed with my then boyfriend, watching grown men throw beer cans and insults at a team that couldn't win an argument with an imbecile. It was depressing stuff, but the chips and beer were good.
I guess when I go to Heaven (and believe me, readers, I shall be going to Heaven) I will join the choir of angels. I suspect there won't be beer and chips. And it certainly won't be singing the songs we sang at Chelsea. But I wonder whether there will be auditions - and whether some saint that looks suspiciously like Simon Cowell will ask me why nobody told me I couldn't sing. On the other hand, perhaps I will, as Yeats suggests, have paddled in that mysterious and every brimming stream where ..."all who have obeyed the Holy law paddle and are perfect". Can you imagine such a choir? Millions of individual yet perfect voices singing in unison. But will there be football? Will there be theatre? And, most worrying of all, if everybody who goes to Heaven paddles and becomes perfect, how will I recognise any of my friends?
Monday, 20 April 2009
Tuesday, 16 September 2008
Summer Sadness
The summer is over. I always find it hard to accept. The cold starts to nip at your bones and you know that it will be months and months before you feel the soft touch of sunshine again. This time I find it especially poignant, not knowing what the future has in store is difficult for a control freak like me.
Not that the UK summer this year has been much to celebrate. It seemed to rain forever, especially during our two weeks in Cornwall, where the misery was made worse by being admitted to Truro hospital for a port infection and being fed intravenous anitbiotics for ten of our fourteen days there.
I remember Truro from a previous holiday with mum, dad and Jim. I must have been about fifteen or sixteen. We spent a grey, rainy day trudging around the city shops looking for something to keep us occupied until we could assume it was a reasonable enough hour to return to our bed and breakfast. But much of the time on that holiday it was sunny and warm and we explored hidden bays and coves. There was always a picnic for lunch, most often consisting of warm cheese, sweaty ham, crusty rolls and buttered current buns. Sometimes there would be kimberly biscuits. And always mum would make a fresh pot of tea on a blue camping gaz stove balanced in the back of our old mini traveller, the doors propped open to make a wind break. And because my mother believed that the camping gaz bottle was always in imminent danger of exploding, no child was allowed to venture near the stove, nor, for fear of knocking it over, to climb into the car. I remember shivering under a towel, fresh out of the sea, waiting for the plastic cups to be handed round and the stove to be packed safely away so that I could clamber into the back seat and get some clothes on!
2008 was an especially sad summer because one of my friends, who also had breast cancer, died very unexpectedly and suddenly when we were away in Greece. She was in her forties and, like me, had teenage children. I had visited her just before we went to Greece. She was in hospital, but in good spirits because she had been told that the shortness of breath she had been suffering was due to a chest infection and not to cancer. We had talked about going skiing together, about her daughter's A Level results and about the need to keep telling children the truth, no matter how unpalatable. She died three days after we got back, although I had not realised that she was so ill and so I was taken completely by surprise.
Her death has brought me to consider the concept of dying too youg. We say this all the time when somebody dies before they reach old age - they were taken too early, died too soon etc etc. And it has led me to believe that I don't actually believe it is possible to die too young. For if we admit the concept of an early death, do we also introduce, therefore, the concept of a late one - or one that is too late? Of course, some people will live a lot longer than others. And it is heartbreakingly sad for those left behind to cope with the knowledge that they will no longer share a meal, a joke or a journey with somebody they love. But there is no set age for death. People die when they die, not too early and not too late. They achieve what they are going to achieve in the years that they have. We should not mourn the years they did not have, nor the things they did not achieve. We should celebrate the years we shared with them, and recognise that they did what they did, and that it was enough. And in any case, if I believe that Jesus is waiting for me with arms open when I die, (and I do), why should anyone feel angry or robbed when our time comes?
So when my time comes, I want people to know this. I did not die early. Or too soon. I died on time - a concept which I know my husband and family will laugh at because I am NEVER on time for anything. But maybe, even in dying, there is a first time for everything?
Not that the UK summer this year has been much to celebrate. It seemed to rain forever, especially during our two weeks in Cornwall, where the misery was made worse by being admitted to Truro hospital for a port infection and being fed intravenous anitbiotics for ten of our fourteen days there.
I remember Truro from a previous holiday with mum, dad and Jim. I must have been about fifteen or sixteen. We spent a grey, rainy day trudging around the city shops looking for something to keep us occupied until we could assume it was a reasonable enough hour to return to our bed and breakfast. But much of the time on that holiday it was sunny and warm and we explored hidden bays and coves. There was always a picnic for lunch, most often consisting of warm cheese, sweaty ham, crusty rolls and buttered current buns. Sometimes there would be kimberly biscuits. And always mum would make a fresh pot of tea on a blue camping gaz stove balanced in the back of our old mini traveller, the doors propped open to make a wind break. And because my mother believed that the camping gaz bottle was always in imminent danger of exploding, no child was allowed to venture near the stove, nor, for fear of knocking it over, to climb into the car. I remember shivering under a towel, fresh out of the sea, waiting for the plastic cups to be handed round and the stove to be packed safely away so that I could clamber into the back seat and get some clothes on!
2008 was an especially sad summer because one of my friends, who also had breast cancer, died very unexpectedly and suddenly when we were away in Greece. She was in her forties and, like me, had teenage children. I had visited her just before we went to Greece. She was in hospital, but in good spirits because she had been told that the shortness of breath she had been suffering was due to a chest infection and not to cancer. We had talked about going skiing together, about her daughter's A Level results and about the need to keep telling children the truth, no matter how unpalatable. She died three days after we got back, although I had not realised that she was so ill and so I was taken completely by surprise.
Her death has brought me to consider the concept of dying too youg. We say this all the time when somebody dies before they reach old age - they were taken too early, died too soon etc etc. And it has led me to believe that I don't actually believe it is possible to die too young. For if we admit the concept of an early death, do we also introduce, therefore, the concept of a late one - or one that is too late? Of course, some people will live a lot longer than others. And it is heartbreakingly sad for those left behind to cope with the knowledge that they will no longer share a meal, a joke or a journey with somebody they love. But there is no set age for death. People die when they die, not too early and not too late. They achieve what they are going to achieve in the years that they have. We should not mourn the years they did not have, nor the things they did not achieve. We should celebrate the years we shared with them, and recognise that they did what they did, and that it was enough. And in any case, if I believe that Jesus is waiting for me with arms open when I die, (and I do), why should anyone feel angry or robbed when our time comes?
So when my time comes, I want people to know this. I did not die early. Or too soon. I died on time - a concept which I know my husband and family will laugh at because I am NEVER on time for anything. But maybe, even in dying, there is a first time for everything?
Friday, 13 June 2008
Notes from a Far Country
Two weeks ago I had my final taxotere. I can't say I was sorry to bid farewell to this particular drug. It's horrible stuff. Now I will continue on Avastin (the trial drug) and bisphosphonates (the bone strengtheners) every three weeks. The aim is to remain stable for as long as possible - although of course I still pray that they will tell me that I am NED (no evidence of disease).
When I got home from my chemo, and just before I went to bed, I spotted my chest was looking a bit red and there was a little bit of puss leaking from a tiny hole. So I rang the Marsden and they told me to come in. At 2.30am Tony and I arrived and I was promptly put onto an IV drip so that I could reecive antibiotics. By 4.30am I had the rigours - shaking so violently that I thought the bed was going to collapse.
It turns out that I had a really nasty bacterial infection and, because my blood count was so low after chemo, I had little by way of an immune system to fight it. So I was kept in for ten days, when I kept spiking temperatures and the doctors tried to get the infection under control. As well as being a painful time, it was mind numbingly boring, relieved only by occassional trips to outpatients to talk to the old ladies there and a plentiful supply of current buns in the PALS cafe.
I'm doing OK now, but it was scary stuff. Especially when they told me that they had suspected my infection might be MRSA!
Being in the Marsden got me thinking of other hospital stays. I remember being six or seven, and being taken into Hammersmith Hospital to have my adenoids out. My aunty Sally had noticed that I was quite deaf and I was always getting into trouble at school for not paying attention (I didn't get the nickname "Daydream" for nothing!). It turns out that my adenoids were so swollen that I had become as deaf as a post!
Oh, how scared and unhappy I was being in hospital. It was the first time I had been away from home for any significant amount of time and I screamed the place down when my mum left me to the care of the nurses. As her hounds tooth check coat disappeared down the corridor I had to be restrained by two burly orderlies. I fought them like a wild animal to run after her, but it was no use, I was abandoned. I can still recall the smell of that place, and the way I was terrified of the flat black lace up shoes they all wore. But my main memory is of my father's face materialising out of the darkness when I came round from the operation and the feeling that I was safe. He had such a calm and reassuring presence. How I wish he was still here now.
Then, when I was fifteen, I was back in hospital for an operation on my ears to rid me of a disease that had eaten away the bones in my ear and was attacking my skull. Things were different this time because I had a room of my own and all of my friends came to visit me. I was missing my GCSE mocks, so there were real advantages this time to being in hospital. There was also a boy in the next room of about the same age and we struck up a friendship. In fact, we briefly went out with each other for a while after we got out. He was in for an operation on his nose, so he had a tube sticking out of his nostril. I was shaved on one side of my head and bandaged like a mummy. We made a very strange looking pair and it didn't last long.
My room was on the ground floor near the main entrance so people coming to visit me would knock on the window and wave before coming in. Then one day there was a knock and the next thing I knew the family dog, Heidi, came flying through the open window. She sat happily on the bed for a couple of hours before being taken home. I am sure the nurses would have had a fit had they known.
Which brings me back to the nurses at the Marsden, who really are angels. Because the nurses there choose to work with cancer patients, they seem to stay longer than nurses in other hospitals. Going back into the Marsden ten weeks after my previous stay I found all the same staff, most of whom remembered me and all of whom nursed me with such care and dilligence. Their job cannot be easy, dealing with people who are sometimes so very ill. Thank you, all of you. And I promise I won't ever bring a dog onto a hospital ward ever again.
When I got home from my chemo, and just before I went to bed, I spotted my chest was looking a bit red and there was a little bit of puss leaking from a tiny hole. So I rang the Marsden and they told me to come in. At 2.30am Tony and I arrived and I was promptly put onto an IV drip so that I could reecive antibiotics. By 4.30am I had the rigours - shaking so violently that I thought the bed was going to collapse.
It turns out that I had a really nasty bacterial infection and, because my blood count was so low after chemo, I had little by way of an immune system to fight it. So I was kept in for ten days, when I kept spiking temperatures and the doctors tried to get the infection under control. As well as being a painful time, it was mind numbingly boring, relieved only by occassional trips to outpatients to talk to the old ladies there and a plentiful supply of current buns in the PALS cafe.
I'm doing OK now, but it was scary stuff. Especially when they told me that they had suspected my infection might be MRSA!
Being in the Marsden got me thinking of other hospital stays. I remember being six or seven, and being taken into Hammersmith Hospital to have my adenoids out. My aunty Sally had noticed that I was quite deaf and I was always getting into trouble at school for not paying attention (I didn't get the nickname "Daydream" for nothing!). It turns out that my adenoids were so swollen that I had become as deaf as a post!
Oh, how scared and unhappy I was being in hospital. It was the first time I had been away from home for any significant amount of time and I screamed the place down when my mum left me to the care of the nurses. As her hounds tooth check coat disappeared down the corridor I had to be restrained by two burly orderlies. I fought them like a wild animal to run after her, but it was no use, I was abandoned. I can still recall the smell of that place, and the way I was terrified of the flat black lace up shoes they all wore. But my main memory is of my father's face materialising out of the darkness when I came round from the operation and the feeling that I was safe. He had such a calm and reassuring presence. How I wish he was still here now.
Then, when I was fifteen, I was back in hospital for an operation on my ears to rid me of a disease that had eaten away the bones in my ear and was attacking my skull. Things were different this time because I had a room of my own and all of my friends came to visit me. I was missing my GCSE mocks, so there were real advantages this time to being in hospital. There was also a boy in the next room of about the same age and we struck up a friendship. In fact, we briefly went out with each other for a while after we got out. He was in for an operation on his nose, so he had a tube sticking out of his nostril. I was shaved on one side of my head and bandaged like a mummy. We made a very strange looking pair and it didn't last long.
My room was on the ground floor near the main entrance so people coming to visit me would knock on the window and wave before coming in. Then one day there was a knock and the next thing I knew the family dog, Heidi, came flying through the open window. She sat happily on the bed for a couple of hours before being taken home. I am sure the nurses would have had a fit had they known.
Which brings me back to the nurses at the Marsden, who really are angels. Because the nurses there choose to work with cancer patients, they seem to stay longer than nurses in other hospitals. Going back into the Marsden ten weeks after my previous stay I found all the same staff, most of whom remembered me and all of whom nursed me with such care and dilligence. Their job cannot be easy, dealing with people who are sometimes so very ill. Thank you, all of you. And I promise I won't ever bring a dog onto a hospital ward ever again.
Sunday, 25 May 2008
Looking Up
I know I have to lift my eyes and look to the mountains but, I admit, I am in the valley at the moment. My fingernails all dropped off a couple of weeks ago and my hands are sore. My eyes won't stop running, to the point that I can't see properly for most of the time. And when I try to do anything half way normal I am soon exhausted.
This week, for example, I decided to take my daughter to an Open Day at Oxford where she could look around one of the colleges. I also volunteered to pick up my son from his boarding school in Ipswich. I knew it was a long drive from our house to Oxford, then onto Ipswich and then to home, but I love driving my car - I don't do it enough - and I was looking forward to racing along with the hood down and some Robbie Williams on the CD player.
And, apart from losing the volume on the sat nav and having to spend a few miles driving along with the sat nav held in front of me so I didn't get lost, it all went quite smoothly. We found the college OK, I negotiated my way around the lanes of Suffolk quite successfully and turned up at my son's school in time to watch the parade - the entire school turned out in naval uniform marching along to the band on the school quad.
I am always moved by this occassion. My dad loved marching bands. As a child, I remember him taking himself off to Kneller Hall in Twickenhamd every Wednesday in the summer to listen to the music. Hearts of Oak, Men of Harlech, Rule Brittania. In the winter it was off to the Albert Hall to listen to the Welsh Male Voice Choir. Such was the soundtrack of my early years, inseparable from the image of my dad humming along as he lathered up his bristly face and drew a silver razor across his chin. He would, I am sure, have loved to have heard these tunes again as he watched his grandson in full naval regalia marching with the guard, rifle over his shoulder, so smart, so proud to be selected to be part of the elite band of students.
After the parade, and after my son had been "cleared to go", it was back into the car. But by the time we met the M25 and the hour long tailback I was exhausted. I kept it together until we got home, and then I flaked out. I really couldn't keep my eyes open, even though ALL of the Osmunds (including Marie, who hasn't been seen on our screens since Paper Roses) were on Jonathan Ross.
And how I have paid for it these past two days. Flat out on the sofa. Zero energy. Feeling sorry for myself. Yes, this is a deep valley and sometimes the walls are very steep.
But it is my last chemo on Wednesday and from then on things should start looking up. We know from the trials of the drug I am on that people generally have a reasonably long period of remission once the chemo finishes. Nobody can say how long exactly. The average is fourteen months before "progression" - an ominous word if ever I heard one. But when I ask at the Marsden what the longest period of remission is, they tell me they don't know. I was only the second person at the Marsden to sign up for this particular trial (there are a few more now), so in many ways I am going to be setting the odds. They tell me that they hope I will have longer than average before the cancer starts to grow again. They have been pleased with my response so far (a "very good partial response"). And my tumour load is low - just a handful of small lumps in the lymph nodes rather than a big tumour growing on an important organ. But I have learned with this disease that there is no certainty. I may last for years. I may last for weeks. The trick is, as my good friend Carol tells me, to live a day at a time and, if that's not possible, an hour at a time or even a minute at a time.
So I nurse my poor fingers. I wipe my eyes. I sleep. And soon, please God, I will scale the walls of this valley. My tears will cease and I will, indeed, see hope again.
This week, for example, I decided to take my daughter to an Open Day at Oxford where she could look around one of the colleges. I also volunteered to pick up my son from his boarding school in Ipswich. I knew it was a long drive from our house to Oxford, then onto Ipswich and then to home, but I love driving my car - I don't do it enough - and I was looking forward to racing along with the hood down and some Robbie Williams on the CD player.
And, apart from losing the volume on the sat nav and having to spend a few miles driving along with the sat nav held in front of me so I didn't get lost, it all went quite smoothly. We found the college OK, I negotiated my way around the lanes of Suffolk quite successfully and turned up at my son's school in time to watch the parade - the entire school turned out in naval uniform marching along to the band on the school quad.
I am always moved by this occassion. My dad loved marching bands. As a child, I remember him taking himself off to Kneller Hall in Twickenhamd every Wednesday in the summer to listen to the music. Hearts of Oak, Men of Harlech, Rule Brittania. In the winter it was off to the Albert Hall to listen to the Welsh Male Voice Choir. Such was the soundtrack of my early years, inseparable from the image of my dad humming along as he lathered up his bristly face and drew a silver razor across his chin. He would, I am sure, have loved to have heard these tunes again as he watched his grandson in full naval regalia marching with the guard, rifle over his shoulder, so smart, so proud to be selected to be part of the elite band of students.
After the parade, and after my son had been "cleared to go", it was back into the car. But by the time we met the M25 and the hour long tailback I was exhausted. I kept it together until we got home, and then I flaked out. I really couldn't keep my eyes open, even though ALL of the Osmunds (including Marie, who hasn't been seen on our screens since Paper Roses) were on Jonathan Ross.
And how I have paid for it these past two days. Flat out on the sofa. Zero energy. Feeling sorry for myself. Yes, this is a deep valley and sometimes the walls are very steep.
But it is my last chemo on Wednesday and from then on things should start looking up. We know from the trials of the drug I am on that people generally have a reasonably long period of remission once the chemo finishes. Nobody can say how long exactly. The average is fourteen months before "progression" - an ominous word if ever I heard one. But when I ask at the Marsden what the longest period of remission is, they tell me they don't know. I was only the second person at the Marsden to sign up for this particular trial (there are a few more now), so in many ways I am going to be setting the odds. They tell me that they hope I will have longer than average before the cancer starts to grow again. They have been pleased with my response so far (a "very good partial response"). And my tumour load is low - just a handful of small lumps in the lymph nodes rather than a big tumour growing on an important organ. But I have learned with this disease that there is no certainty. I may last for years. I may last for weeks. The trick is, as my good friend Carol tells me, to live a day at a time and, if that's not possible, an hour at a time or even a minute at a time.
So I nurse my poor fingers. I wipe my eyes. I sleep. And soon, please God, I will scale the walls of this valley. My tears will cease and I will, indeed, see hope again.
Saturday, 26 April 2008
Chemo Day 10
Chemo days come and go. Some are better than others. Today, I am feeling tired, but it didn't stop me taking my daughter on a quick hit and run of the charity shops.
There are seven charity shops along our local high street. I picked up a Robbie Williams CD. She picked up another dress - a black one again. It occours to me that she is going to have a wardrobe crisis when it comes to my funeral!
We travelled in my open top Volvo playing the Moulin Rouge CD at full belt. I always forget how therapeutic music and driving is. Tony keeps urging me to sell the car, and I know on a practical and financial level he is right. I haven't had the nerve to work out what this car is costing me in petrol. The only problem with selling it is that, with the price of fuel about to hit five pounds a gallon, I can't imagine who would be silly enough to buy it. Well, I can. A middle aged woman having a hissy fit about how she has never had the car of her dreams would. I did, after all.
Day 10 is the low point of my chemo cycle. After that, the neutrophils start to pick up and things begin to return to normal. But on this three weekly cycle that I'm on I never feel as though I have properly recovered before I get the next dose. And it is all cumulative, so the fatigue, the aching joints. the mouth ulcers and sore throat, the runny eyes and so on just keep getting a little worse every cycle. Oh, and did I mention the nails which are looking a strange shade of green under the nail polish and ache as if somebody has stomped on my hand? And the bright red face and peeling skin? And I forgot the nosebleeds, which are so embarrassing when they come on without warning and you suddenly realise you are dripping blood into the ice cream cabinet at Sainsburys. It's like death by a thousand cuts. None of the side effects are so serious that they pose immediate risk of death (well, the low neutrophils do, but apart from that...). Together they make life truly miserable.
Time spent doing chemo is dull. I simply don't have enough energy to do anything. So I look at the garden and imagine doing some work in it, and I glance into the children's rooms and briefly consider sorting them out before I am overcome by a wave of fatigue. I spend a lot of time sorting out paperwork but it seems to take me two weeks to do a task that would normally take half an hour. And it is so depressing. I wonder why filling time is so important to me, then realise how important it is to everybody. There is a sort of pscyhology to it, I think. We have to fill our time in order to justify our place in the world. If we don't fill the time, we don't deserve to have it in the first place. And what do people do to fill their time? They clean their houses; they shop for clothes; they decorate incessantly. It all seems pointless. I think I need to learn how NOT to fill time. How to just be, and how to enjoy the simply being while I still can. How to be still. To listen. To watch. To absorb.
My friend, Mrs T, wrote to me to tell me how cross she was that she went out and did all the errands and when she got home Mr T was still in the same spot. Perhaps we all need to take a lesson from Mr T? Perhaps he has it all worked out. Or maybe he was just watching Deal or No Deal (where, by the way, I have never seen anybody take the Banker's first offer even though it's often much better than what they end up with).
Oh no! I have spilled my secret. Instead of gardening and sorting out children's rooms I am watching rubbish daytime TV. Secret's out. Shame on me.
There are seven charity shops along our local high street. I picked up a Robbie Williams CD. She picked up another dress - a black one again. It occours to me that she is going to have a wardrobe crisis when it comes to my funeral!
We travelled in my open top Volvo playing the Moulin Rouge CD at full belt. I always forget how therapeutic music and driving is. Tony keeps urging me to sell the car, and I know on a practical and financial level he is right. I haven't had the nerve to work out what this car is costing me in petrol. The only problem with selling it is that, with the price of fuel about to hit five pounds a gallon, I can't imagine who would be silly enough to buy it. Well, I can. A middle aged woman having a hissy fit about how she has never had the car of her dreams would. I did, after all.
Day 10 is the low point of my chemo cycle. After that, the neutrophils start to pick up and things begin to return to normal. But on this three weekly cycle that I'm on I never feel as though I have properly recovered before I get the next dose. And it is all cumulative, so the fatigue, the aching joints. the mouth ulcers and sore throat, the runny eyes and so on just keep getting a little worse every cycle. Oh, and did I mention the nails which are looking a strange shade of green under the nail polish and ache as if somebody has stomped on my hand? And the bright red face and peeling skin? And I forgot the nosebleeds, which are so embarrassing when they come on without warning and you suddenly realise you are dripping blood into the ice cream cabinet at Sainsburys. It's like death by a thousand cuts. None of the side effects are so serious that they pose immediate risk of death (well, the low neutrophils do, but apart from that...). Together they make life truly miserable.
Time spent doing chemo is dull. I simply don't have enough energy to do anything. So I look at the garden and imagine doing some work in it, and I glance into the children's rooms and briefly consider sorting them out before I am overcome by a wave of fatigue. I spend a lot of time sorting out paperwork but it seems to take me two weeks to do a task that would normally take half an hour. And it is so depressing. I wonder why filling time is so important to me, then realise how important it is to everybody. There is a sort of pscyhology to it, I think. We have to fill our time in order to justify our place in the world. If we don't fill the time, we don't deserve to have it in the first place. And what do people do to fill their time? They clean their houses; they shop for clothes; they decorate incessantly. It all seems pointless. I think I need to learn how NOT to fill time. How to just be, and how to enjoy the simply being while I still can. How to be still. To listen. To watch. To absorb.
My friend, Mrs T, wrote to me to tell me how cross she was that she went out and did all the errands and when she got home Mr T was still in the same spot. Perhaps we all need to take a lesson from Mr T? Perhaps he has it all worked out. Or maybe he was just watching Deal or No Deal (where, by the way, I have never seen anybody take the Banker's first offer even though it's often much better than what they end up with).
Oh no! I have spilled my secret. Instead of gardening and sorting out children's rooms I am watching rubbish daytime TV. Secret's out. Shame on me.
Sunday, 13 April 2008
Let's get the difficult stuff out of the way first
Well, since I said this was a place to post my wishes about what I wanted to happen at the end of my life, and more especially so that my wishes re my funeral etc didn't get lost in some terrible paper search (anybody who knows about how we handle paperwork in our house will know what I mean), I am posting here my ideas/wishes for what I want to happen at the end of my life.
It's not been easy to put together, and no doubt it will not be easy for you to read. I have shed many tears while I have been doing it, but I feel so much better having put something together.
Deep breath. Here goes:
These are my wishes regarding end of life issues. They are provided to help ease decision making amongst my loved ones at a time when I may no longer be able to communicate my wishes verbally.
End of Life Issues
When my death is near, I would like to be in a hospice near to home, preferably the Princess Alice Hospice in Esher so that family and friends can come to visit me. If in pain, I would like to receive sufficient pain medication to keep me as free as possible from pain. Should this precipitate death the key question to ask is whether the medication is administered for pain relief, or for assisted suicide. I DO NOT wish to be helped to die. God will decide when the right time is. However, please do not attempt to resuscitate me if it is only to prolong suffering.
I wish to receive the Sacrament of the Sick and any other Catholic rites associated with dying, including, if I am still conscious, Holy Communion.
Funeral Issues
I’m not fussed about the chapel of rest business. I don’t particularly want to be put on display.
I wish to receive a Catholic funeral service at Our Lady of Lourdes Church. This should be a celebration of my life, and of the Resurrection. I’d especially like Father Rob to conduct this service. I’d like people to feel welcome to read passages from scripture/poetry etc. Please don’t wear black. Come as if for a party instead.
Do not invest in an elaborate wood coffin. Nor give me the faux wood that most coffins are made of and that leak toxic chemicals into the ground. I like the ecopod coffins, which are made from recycled paper. And I especially like the gold leaf one. (www.ecopod.co.uk).
I would like my coffin to be carried in by people who know me, not strangers. Strong boys and men, I suppose, is the order of the day, although women are of course welcome to volunteer. I have these people in mind, should they be so willing: My brother, Jim, my brother in law, Jem, Max Robinson, Matthew Mack, Christopher Mannion, Roger Camden, Rupert Howe. All of these people have held a special place in my life.
A list of possible readings and songs is attached.
Having researched these, and posted them, I am also really tempted to abandon all of the "conventional" readings and instead have a reading of Oscar Wilde’s The Selfish Giant at my funeral. I have always loved this story, I have read it to countless children, and cry every time. I'm still thinking about it.
Please do not pay for flowers for my funeral service. Hand picked flowers from the garden are lovely, or, if it winter time, some greenery from evergreen shrubs.
Children are very welcome to attend, but please don’t bring children along if you think it will be too distressing for them.
Cremation or Burial Issues
I confesss, my personal jury is still out on this. If I am cremated, I would like this to be a simple service and my ashes dispersed of according to my instructions here. If I ultimately decide to be buried, I would like a woodland burial. The site at Shamley Green near Guildford seems good enough. (Contact info@woodlandburials.co.uk tel 01255 880040). Celebrate my life by lighting candles, singing songs and letting off flying lanterns (see contact details under the “If Cremated” bit.
If Cremated - Dispersal of Ashes
If I opt for cremation, I would like my final resting place to be somewhere family can visit from time to time, and somewhere that has been special to me in my life. I would like my ashes to be put into a biodegradable container such as one available from the Go Green Online shop. My wish is for my remains to be taken to a body of water, such as Barnes Pond, Penn Ponds or the pond in Bushey Park, preferably at dusk on a day with calm weather.
I would like candles to be lit and if possible floated on the water as my mortal remains are placed on the water and gently pushed away. I’d love it if some flying lanterns could be lit and let off into the sky. I would like music to accompany this simple dispersal – Rod Stewart’s “Sailing” would be great, plus “Candle on the Water” – the Helen Reddy version.
You can find biodegradable urns at: http://www.gogreen.cellande.co.uk/shop/products/urn/urn.php
“Journey” will momentarily float, and then sink and disintegrate.
The “Shell” urn will float for about five minutes and then sink.
You can find flying lanterns at
http://www.skylanterns.com/
Songs and Music
For my funeral service, and before the coffin is brought in, I'd like everybody to sit quietly and listen to Nella Fantasia sung by Eleanor McCain.
I’d quite like to come in to “You Raise me Up”
During Holy Communion I’d like “Be Still” and, if there is a long queue, “Panis Anglicus”
I’d like Mozart’s Clarinet Concerto at the end. It always makes me feel happy and I remember playing it all the time on the chairlift at Saalbach when I first went skiing.
Other than that, there are other pieces of lovely music that have been my favourites that would be suitable for a church service, including:
You are the Shepherd – African Children’s Choir
Shine, Jesus, Shine
As Gentle as Silence
Here I am Lord
Make me a Channel of Your Peace
I Vow to Thee My Country - BOTH verses (the first one means nothing without the second. I expect Chris to sing this one at full volume).
The following are not really church-ey, but I love them and think they may be suitable to play at my cremation or burial:
Eva Cassidy’s “Somewhere over the Rainbow”
David Bowie’s “Wild is the Wind”
Robbie Williams “Angels”
Freddie Mercury and the opera singer lady “Barcelona”
If I am cremated, I would especially like Rod Stewart’s “Sailing” and Helen Reddy’s “Candle on the Water” to be played while my ashes are floated out over the pond.
Readings/Words
There are lots of suggestions here for words to use at my funeral, cremation or dispersal of ashes. This is my favourite of them all. It might be used at the end of my funeral service, or, if a memorial booklet is produced, on the back cover of the booklet:
Late Fragment by Raymond Carver
And did you get what you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself beloved on the earth.
The following readings are also special to me – there are lots here, and I don’t insist on them all. I’m hoping somebody might make a choice!
Brian Patten's adaptation from Pablo Neruda Arauda 1996 “So how long is a man's life finally?”
What is Dying? by Bishop Brent
Death is Nothing at All by Henry Scott Holland 1847 -1918
Readings from Scripture
This is not my strong point and Father Rob might have some better ideas. But I like these ones:
1 CORINTHIANS 13:1-13 – the one about love is gentle, love is kind. It was one of the readings when Tony and I got married.
1 PETER 1:6-9 - a short reading about how faith is more precious than gold, and is tested by fire. Barbara will remember telling me that God is making me into a lovely vase, not an ugly ashtray.
PSALM 139:1-6 – I love the idea of God knitting me together in my mother’s womb.
JOHN 14:1-6 – Jesus promises the disciples he will not leave them orphans
REVELATION 21:1-5a, 6b-7 – No more death, no more sadness, no more mourning, no more pain
WISDOM 3:1-6, 9 – The souls of the upright are in the hands of god, no torment can touch them.
Remember, though, I am still thinking about "The Selfish Giant". It means more to me than any of the readings, with the exception of the Raymond Carver piece.
It's not been easy to put together, and no doubt it will not be easy for you to read. I have shed many tears while I have been doing it, but I feel so much better having put something together.
Deep breath. Here goes:
These are my wishes regarding end of life issues. They are provided to help ease decision making amongst my loved ones at a time when I may no longer be able to communicate my wishes verbally.
End of Life Issues
When my death is near, I would like to be in a hospice near to home, preferably the Princess Alice Hospice in Esher so that family and friends can come to visit me. If in pain, I would like to receive sufficient pain medication to keep me as free as possible from pain. Should this precipitate death the key question to ask is whether the medication is administered for pain relief, or for assisted suicide. I DO NOT wish to be helped to die. God will decide when the right time is. However, please do not attempt to resuscitate me if it is only to prolong suffering.
I wish to receive the Sacrament of the Sick and any other Catholic rites associated with dying, including, if I am still conscious, Holy Communion.
Funeral Issues
I’m not fussed about the chapel of rest business. I don’t particularly want to be put on display.
I wish to receive a Catholic funeral service at Our Lady of Lourdes Church. This should be a celebration of my life, and of the Resurrection. I’d especially like Father Rob to conduct this service. I’d like people to feel welcome to read passages from scripture/poetry etc. Please don’t wear black. Come as if for a party instead.
Do not invest in an elaborate wood coffin. Nor give me the faux wood that most coffins are made of and that leak toxic chemicals into the ground. I like the ecopod coffins, which are made from recycled paper. And I especially like the gold leaf one. (www.ecopod.co.uk).
I would like my coffin to be carried in by people who know me, not strangers. Strong boys and men, I suppose, is the order of the day, although women are of course welcome to volunteer. I have these people in mind, should they be so willing: My brother, Jim, my brother in law, Jem, Max Robinson, Matthew Mack, Christopher Mannion, Roger Camden, Rupert Howe. All of these people have held a special place in my life.
A list of possible readings and songs is attached.
Having researched these, and posted them, I am also really tempted to abandon all of the "conventional" readings and instead have a reading of Oscar Wilde’s The Selfish Giant at my funeral. I have always loved this story, I have read it to countless children, and cry every time. I'm still thinking about it.
Please do not pay for flowers for my funeral service. Hand picked flowers from the garden are lovely, or, if it winter time, some greenery from evergreen shrubs.
Children are very welcome to attend, but please don’t bring children along if you think it will be too distressing for them.
Cremation or Burial Issues
I confesss, my personal jury is still out on this. If I am cremated, I would like this to be a simple service and my ashes dispersed of according to my instructions here. If I ultimately decide to be buried, I would like a woodland burial. The site at Shamley Green near Guildford seems good enough. (Contact info@woodlandburials.co.uk tel 01255 880040). Celebrate my life by lighting candles, singing songs and letting off flying lanterns (see contact details under the “If Cremated” bit.
If Cremated - Dispersal of Ashes
If I opt for cremation, I would like my final resting place to be somewhere family can visit from time to time, and somewhere that has been special to me in my life. I would like my ashes to be put into a biodegradable container such as one available from the Go Green Online shop. My wish is for my remains to be taken to a body of water, such as Barnes Pond, Penn Ponds or the pond in Bushey Park, preferably at dusk on a day with calm weather.
I would like candles to be lit and if possible floated on the water as my mortal remains are placed on the water and gently pushed away. I’d love it if some flying lanterns could be lit and let off into the sky. I would like music to accompany this simple dispersal – Rod Stewart’s “Sailing” would be great, plus “Candle on the Water” – the Helen Reddy version.
You can find biodegradable urns at: http://www.gogreen.cellande.co.uk/shop/products/urn/urn.php
“Journey” will momentarily float, and then sink and disintegrate.
The “Shell” urn will float for about five minutes and then sink.
You can find flying lanterns at
http://www.skylanterns.com/
Songs and Music
For my funeral service, and before the coffin is brought in, I'd like everybody to sit quietly and listen to Nella Fantasia sung by Eleanor McCain.
I’d quite like to come in to “You Raise me Up”
During Holy Communion I’d like “Be Still” and, if there is a long queue, “Panis Anglicus”
I’d like Mozart’s Clarinet Concerto at the end. It always makes me feel happy and I remember playing it all the time on the chairlift at Saalbach when I first went skiing.
Other than that, there are other pieces of lovely music that have been my favourites that would be suitable for a church service, including:
You are the Shepherd – African Children’s Choir
Shine, Jesus, Shine
As Gentle as Silence
Here I am Lord
Make me a Channel of Your Peace
I Vow to Thee My Country - BOTH verses (the first one means nothing without the second. I expect Chris to sing this one at full volume).
The following are not really church-ey, but I love them and think they may be suitable to play at my cremation or burial:
Eva Cassidy’s “Somewhere over the Rainbow”
David Bowie’s “Wild is the Wind”
Robbie Williams “Angels”
Freddie Mercury and the opera singer lady “Barcelona”
If I am cremated, I would especially like Rod Stewart’s “Sailing” and Helen Reddy’s “Candle on the Water” to be played while my ashes are floated out over the pond.
Readings/Words
There are lots of suggestions here for words to use at my funeral, cremation or dispersal of ashes. This is my favourite of them all. It might be used at the end of my funeral service, or, if a memorial booklet is produced, on the back cover of the booklet:
Late Fragment by Raymond Carver
And did you get what you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself beloved on the earth.
The following readings are also special to me – there are lots here, and I don’t insist on them all. I’m hoping somebody might make a choice!
Brian Patten's adaptation from Pablo Neruda Arauda 1996 “So how long is a man's life finally?”
What is Dying? by Bishop Brent
Death is Nothing at All by Henry Scott Holland 1847 -1918
Readings from Scripture
This is not my strong point and Father Rob might have some better ideas. But I like these ones:
1 CORINTHIANS 13:1-13 – the one about love is gentle, love is kind. It was one of the readings when Tony and I got married.
1 PETER 1:6-9 - a short reading about how faith is more precious than gold, and is tested by fire. Barbara will remember telling me that God is making me into a lovely vase, not an ugly ashtray.
PSALM 139:1-6 – I love the idea of God knitting me together in my mother’s womb.
JOHN 14:1-6 – Jesus promises the disciples he will not leave them orphans
REVELATION 21:1-5a, 6b-7 – No more death, no more sadness, no more mourning, no more pain
WISDOM 3:1-6, 9 – The souls of the upright are in the hands of god, no torment can touch them.
Remember, though, I am still thinking about "The Selfish Giant". It means more to me than any of the readings, with the exception of the Raymond Carver piece.
Clouds of Glory
Actually, it doesn't feel like I am trailing clouds of glory. It feels like other, less savoury, things trail behind me, like an old pair of tights protruding from the bottom of a hastily pulled on pair of jeans. Dogs, for instance, hungry for their breakfast. Children seeking socks, shirts, paperwork to be signed. Unpaid bills. Unanswered letters. And illness. Yes, illness follows me everywhere.
I started this blog to record my experiences as I go through this bone and spirit crushing illness. I write it because so often, despite my years of working and playing with words, I sometimes just cannot say what I want to say out loud.
Can I capture it in writing? Who knows. But at the very least this blog will help me to record my thoughts and feelings as they happen in case somebody, at some time, will want to read about them. And I reason that if I publish my wishes - especially those pertaining to the end of my life - it will be more difficult for my husband, (loving, steadfast but always one to take the easier path), to ignore them.
I started this blog to record my experiences as I go through this bone and spirit crushing illness. I write it because so often, despite my years of working and playing with words, I sometimes just cannot say what I want to say out loud.
Can I capture it in writing? Who knows. But at the very least this blog will help me to record my thoughts and feelings as they happen in case somebody, at some time, will want to read about them. And I reason that if I publish my wishes - especially those pertaining to the end of my life - it will be more difficult for my husband, (loving, steadfast but always one to take the easier path), to ignore them.
Subscribe to:
Comments (Atom)
