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.
Saturday, 26 April 2008
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.
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