Charlie Gard is dying. He's been dying since the moment he was conceived. He has mitochondrial deletion syndrome. To put it very simply, the batteries in his cells don't work. There is no treatment for his condition: it's extremely rare and where diseases are rare, you have to improvise as you go along. He has been in Great Ormond Street Hospital for months, kept alive by machines, because keeping him alive is all they can do for him. My family has personal experience with GOSH's genetics team and you'll find no criticism of them here. Where there is hope, they will do whatever they can.
But it's hard, so hard to accept there's no hope, especially in a child so small. His parents have gone to every single court in this land and in Europe, begging for a chance to send Charlie to the US for experimental treatment: experimental treatment that even the doctor advocating it admits won't save him. They have blamed GOSH's workplace culture, saying GOSH refuse to admit they may be wrong about his chances, his prognosis. Their case has gone, to use a rather grim medical term, viral. Donald Trump has stuck his oar in. So has the Pope.
Today, the case goes back to court, to be tried on fresh evidence that Charlie is growing. The hospital say he is not growing. His parents say he is. The judge says he wants proof, and will base his judgement on that proof.
There are several contentious points here:
Medical Ethics
Is it ethical to send Charlie to the USA for treatment? In the UK, candidates for experimental treatment must be able to consent, they must be kept safe, there must be a fair chance of a good outcome. Charlie cannot consent. There is almost zero chance of a good outcome. The reason GOSH do not want him to take part in the trial is because it will make no difference. The reason the US doctor wants him in the trial is because people with mtDNA conditions this severe rarely survive - he's a useful little guinea pig. The key ethic in medicine is DO NO HARM - do nothing that will make the patient worse. Now, Charlie's ultimate outcome is death whichever way you look at it, but there is real suffering implicated in making a tiny baby travel nine hours across the Atlantic, in intensive care, for futile treatment which may kill him in the USA meaning his parents will have to repatriate his body, far away from their network of support. If he survives, he will come home and continue to require high dependency care for the rest of his life. It is traumatic enough to have a child in GOSH, which is often miles away from the family home. To have that child on a different continent is many times more traumatic.
The Rights of Charlie vs The Rights of his Parents
I have seen a lot (A LOT) of people insist that Charlie's parents have the right to decide whatever they want for their child. This is, fortunately, absolute bollocks in law and in practice, to prevent child abuse. As soon as a child is born, they have rights in law to be protected by the state in cases where a parent could do them harm. As described above, the move to send Charlie to the US can easily be considered causing harm to him. No parent is capable of making objective medical decisions about their child, which is why ethics panels exist, which is why doctors try to work with parents to do what is fair to the child. This is why Charlie has his own advocate in court. His parents are fighting for his life at all costs. GOSH are fighting to end that life. Charlie is neither old enough nor capable of having a voice. He gets no say in this.
But his parents, his poor parents. They have the most difficult time of all. Not only are they fighting to save their child, however fruitlessly, they are fighting the state on this matter. When you have a disabled child, however small the disability is, you have to fight and advocate and it feels like the entire system is set out to be as obstructive and difficult as possible. The NHS is an enormously potent and powerful institution. Of course his parents want to take Charlie to the US. Of course they want to exhaust every single possibility. How will they live with themselves if they give up? Every parent would do the same. There may be an unreality about their hopes and ambitions, but he's their baby and they're with him every day. What else can they do but fight?
The Interference of Donald Trump
Urgghh, this man. In case you know nothing of US healthcare, they don't have an NHS. All their healthcare runs on insurance, to a capitalist model that doesn't really work (as previously discussed, it's very difficult to run a capitalist health market when the ultimate outcome of the consumer is death - no profit). Obama brought in an Affordable Healthcare Act (known as Obamacare) to try and implement universal healthcare provision. Trump and the Republicans FUCKING HATE the ACA. Not only are they dismantling it, they are also attempting to bring in legislation to give insurers more power to refuse healthcare to people with preexisting conditions - preexisting conditions like having previously taken contraception, having been pregnant, having been raped. The Republicans do not believe that healthcare is a right.
So, it's somewhat ironic to have both Trump and his VP, Mike Pence, shout that Charlie should be allowed to go there for medical treatment. It is likely that they are going to use this as a stick to beat the NHS with, and since the NHS is one of the bargaining chips that Theresa May has admitted she is prepared to use to establish a trade deal with the US, WE SHOULD BE CONCERNED.
The Interference of the Pope
The Roman Catholic church believe in the inviolable right to life. No abortion. No euthanasia. You would think that the Pope would accept God's divine will in this sort of situation. Apparently not.
Money
BUT THEY HAVE RAISED OVER A MILLION POUNDS!?!! It's not about money. The NHS regularly invest millions in treatment for dying children to improve their quality of life - essentially throwing that money away since it's not curative. But it works both ways. You cannot throw money at illness and hope it goes away (although, money sure helps).
The shift in media's tone has moved away from SHOULD he be allowed to have this treatment to WHY WON'T ANYONE SAVE HIM? There seems to be a total disconnect of the reality of Charlie's condition. If the court rules he can go to the US, he has the treatment, the treatment somehow works a bit and he comes home, he will STILL be terribly ill and disabled for life.
Sometimes, medicine can't help, and that's the real problem here. It's not about citizenship, the perceived failings of the NHS, the monopoly of GOSH, the court system, money, or human rights. It's about the fact that medicine is unlikely to help this child and that is a blow to the heart of us all. Our culture has a faith in medicine, that one day it will destroy death itself, and this sort of case reminds us that medicine is fallible, some illness is written on the genes, and any of us could have a child like Charlie.
Showing posts with label death and dying. Show all posts
Showing posts with label death and dying. Show all posts
13 Jul 2017
26 Mar 2017
Mother's Day
Mothering Sunday, to give it its proper title, marks the halfway point of Lent. The halfway point of the slog through the days of denial, of sacrifice, of fasting. The day where the end draws into sight, the joys of Easter just over the hill. The day when you should visit your home parish, your mother church, and historically, for many young men and women away in domestic or farming service, your mother.
Of course, fewer people observe Lent each year and the original point of Mothering Sunday is lost in a sea of greetings cards, floral bumf, and internet offers. Just this week, the internet has suggested I should buy my mum flowers, clothes, wine, gig tickets, and cookies.
I would buy her a book. A book of social history, or food, or better still, a mix of both. A book she wouldn't have seen in her semi-regular trips to the shop, or advertised in Sainsbury's magazine. I would buy her a book I know she would love, the sort that she would take to bed, packet of crisps in one hand, book in the other. I would buy her something like the history of the playground I saw in Jarrolds on her birthday, that made my heart hurt with longing that I would never get to give it to her.
I would buy her a card and I would write how grateful I am, and how much I love her, and hope somehow that words would be enough. I would take it round, and all her cards from all her seven children would be lined up in a row on the windowsill, and she'd be nagging my dad to go and see his mother before it got any later, and tea would be prepared, and she would be content.
That is what I would do if I still had a mother.
But I don't. And I don't like today. Today hurts.
When your mother dies, you don't merely grieve for the person. The wonderful, hilarious, intelligent woman I grew up with, who was my guardian, my educator, sculptor of my life and my personality, my friend. How I grieve for her. Her phone number in my 'last called' contacts falls further and further down the list and will never come back up. Her things are still where she left them at home, but they don't move a few inches to the left or right, the way things do when they are in use. I still expect to see her when I go in my dad's garden. I call it my dad's now - it was always "mum's house". Although we have inherited the look of her, her voice and her image are now only in recordings. The smell of her lingers in her clothes, but it will never be replenished.
In a million tiny pinpricks and sledgehammers of pain, I grieve for Jo, a woman who happened to be my mum, who was hundreds of things to hundreds of people.
But I grieve for the loss of my mother, for the loss of a mother's love, for the loss of a mother's guidance. For the loss of the person who was there first, who recognised my presence before I had a brain, who felt my first fledgling movements, and who knew me best. For the loss of the stability and foundation you only have through good parenting, through good grounding. Many people are not lucky enough to experience this type of attachment, but I did. We did.
I feel at sea: lost and abandoned and young and frightened. The fear on a child's face when they lose their mother in a shop momentarily, only magnified. When I was little, I was plagued by nightmares, and I would pad up to my parents' room and try and wake my mum up to tell her. She would rarely manage to wake up - poor woman was shattered - so I would sit by her head, and snuggle in to her until I felt safe enough to go silently back to bed. And that is what I long to do, to go and snuggle up to her for a bit until I feel safe enough to go back into the world.
Five months tomorrow. I feel like it has been five years and five minutes. But what really bothers me is that this is for always. That she won't come back. I can't have her back. Maybe if I wait a really long time, and be a really good girl, maybe we will be back together. Maybe.
When Mum was dying, she said she didn't mind dying herself, but she minded terribly about how it would affect us. She knew what it would do to us. I didn't mind Mum dying too much in the end. It felt very natural for her to die. It felt very unnatural to try and prolong her life. There comes a point when it doesn't feel wrong anymore, much as when you are pregnant, there comes a point where you really want it to all be over. So many parallels between entering and leaving the world.
But this grief, this all consuming and powerful grief: that's something to mind. That's something to tear you apart. Particularly on Mother's Day.
Of course, fewer people observe Lent each year and the original point of Mothering Sunday is lost in a sea of greetings cards, floral bumf, and internet offers. Just this week, the internet has suggested I should buy my mum flowers, clothes, wine, gig tickets, and cookies.
I would buy her a book. A book of social history, or food, or better still, a mix of both. A book she wouldn't have seen in her semi-regular trips to the shop, or advertised in Sainsbury's magazine. I would buy her a book I know she would love, the sort that she would take to bed, packet of crisps in one hand, book in the other. I would buy her something like the history of the playground I saw in Jarrolds on her birthday, that made my heart hurt with longing that I would never get to give it to her.
I would buy her a card and I would write how grateful I am, and how much I love her, and hope somehow that words would be enough. I would take it round, and all her cards from all her seven children would be lined up in a row on the windowsill, and she'd be nagging my dad to go and see his mother before it got any later, and tea would be prepared, and she would be content.
That is what I would do if I still had a mother.
But I don't. And I don't like today. Today hurts.
When your mother dies, you don't merely grieve for the person. The wonderful, hilarious, intelligent woman I grew up with, who was my guardian, my educator, sculptor of my life and my personality, my friend. How I grieve for her. Her phone number in my 'last called' contacts falls further and further down the list and will never come back up. Her things are still where she left them at home, but they don't move a few inches to the left or right, the way things do when they are in use. I still expect to see her when I go in my dad's garden. I call it my dad's now - it was always "mum's house". Although we have inherited the look of her, her voice and her image are now only in recordings. The smell of her lingers in her clothes, but it will never be replenished.
In a million tiny pinpricks and sledgehammers of pain, I grieve for Jo, a woman who happened to be my mum, who was hundreds of things to hundreds of people.
But I grieve for the loss of my mother, for the loss of a mother's love, for the loss of a mother's guidance. For the loss of the person who was there first, who recognised my presence before I had a brain, who felt my first fledgling movements, and who knew me best. For the loss of the stability and foundation you only have through good parenting, through good grounding. Many people are not lucky enough to experience this type of attachment, but I did. We did.
I feel at sea: lost and abandoned and young and frightened. The fear on a child's face when they lose their mother in a shop momentarily, only magnified. When I was little, I was plagued by nightmares, and I would pad up to my parents' room and try and wake my mum up to tell her. She would rarely manage to wake up - poor woman was shattered - so I would sit by her head, and snuggle in to her until I felt safe enough to go silently back to bed. And that is what I long to do, to go and snuggle up to her for a bit until I feel safe enough to go back into the world.
Five months tomorrow. I feel like it has been five years and five minutes. But what really bothers me is that this is for always. That she won't come back. I can't have her back. Maybe if I wait a really long time, and be a really good girl, maybe we will be back together. Maybe.
When Mum was dying, she said she didn't mind dying herself, but she minded terribly about how it would affect us. She knew what it would do to us. I didn't mind Mum dying too much in the end. It felt very natural for her to die. It felt very unnatural to try and prolong her life. There comes a point when it doesn't feel wrong anymore, much as when you are pregnant, there comes a point where you really want it to all be over. So many parallels between entering and leaving the world.
But this grief, this all consuming and powerful grief: that's something to mind. That's something to tear you apart. Particularly on Mother's Day.
23 Jan 2017
Moisturiser
Content Warning: Death. Medical details. Cancer. Woe.
Your guts live inside a sort of bag in your abdomen. This bag is called the omentum, and the idea is to keep everything snug and safe, and together. If anything should rupture within your abdomen, through cancer, or infection, or ulceration, this bag has to be opened up, emptied and cleaned if you are to have any chance of survival. When Mum's bowel burst, that's what they did to save her. As you can imagine, sometimes you miss a bit, and this also happened to Mum. This tiny missed bit grew into an abscess right on her liver. The cancer had so convoluted Mum's insides that attempting to operate again would have been enormously complicated and probably hastened her end, thus being a massive waste of money and quality of life. So, instead, they decided to stick a drain in it.
They stuck it in one lunchtime. You cannot imagine the smell, the miasma it created. Just the tiniest drop of pus would stink out a whole sheet. It really upset Mum. She was a very clean person, obsessed with food hygiene and the fact that molecules that could be smelled could be inhaled. The intention was to remove the tube, but this was impossible because first the infection kept filling back up, and second it was in a tumour. So, the tube stayed in and she had a 600ml capacity bag strapped to her leg. When it first went on, it fit perfectly. By the time she died, it flapped around and didn't fit to her leg at all. It was a very visual reminder of how much weight she had lost and how quickly.
She was terribly distressed about the smell, and the next morning, I was wracking my brains about what I could do for her to make her feel less violated. I found some travel Molton Brown bath gels and I took them into hospital, and bought some flannels. She couldn't have a bath or a shower with the drain in, so she chose the one she liked best and I put it on a flannel for her to smell instead of the drain. She liked White Sandalwood the best.
I had a travel sized pot of the white sandalwood moisturiser at home, so I took it round once she was home, and I spent a long time putting it on her. I'm not sure whether it was because she was chronically dehydrated, or the liver failure, or the immobility, but her skin cracked really badly and she hated it. The moisturiser helped a little bit. I ended up buying her a massive canister of the stuff as a reward for being so brave. As an early Christmas present. As an attempt to make her smile.
And so I spent the rest of her life gently stroking her with moisturiser, trying to restore some life to her dying skin, trying to keep in contact with her because I was afraid. I recall me, Jess and Sooz ALL moisturising her at once on occasion. She loved to be touched. She had trained as a massage and aromatherapist when I was young, and she had such an art when she gave you a massage. Jess has the same gift, but I do not. But I tried. And I'm not usually very physical, but I wanted to do something.
But as time went on, her skin became unbearably fragile and painful. I hurt her by accident so many times, because I got the pressure wrong. She would snap sometimes; she wanted us with her but she wanted to be alone. She sat in the garden, covered in fleeces, reading magazines, chainsmoking, and we would sit by her and try to read too, but not really taking in the words. I would try to stroke away the sloughing of her skin, the chafing of her frustration - only very occasionally expressed - and try to make her feel normal again.
After a while, she lost the feeling in her skin. We could touch her properly again, although I don't know if she could feel it. Dad could move her more easily. Whenever I was with her, when she couldn't have a conversation, which was most of the time, I reflexively reached for the moisturiser. I brushed her hair. I did the same things I do for my babies when they are poorly. I tried to show her how much I love her.
And now I will never ever be able to smell white sandalwood moisturiser again without smelling the bag of toxicity hanging from my mother's leg. Without smelling the hint of cigarette smoke that surrounded her right up to 48hrs before she died. Without feeling the cracked skin under my hands, desperately trying to rehydrate her by willpower alone. Without recalling the desperate urge to somehow stave off her death.
Which is a shame, because it was my favourite too.
Your guts live inside a sort of bag in your abdomen. This bag is called the omentum, and the idea is to keep everything snug and safe, and together. If anything should rupture within your abdomen, through cancer, or infection, or ulceration, this bag has to be opened up, emptied and cleaned if you are to have any chance of survival. When Mum's bowel burst, that's what they did to save her. As you can imagine, sometimes you miss a bit, and this also happened to Mum. This tiny missed bit grew into an abscess right on her liver. The cancer had so convoluted Mum's insides that attempting to operate again would have been enormously complicated and probably hastened her end, thus being a massive waste of money and quality of life. So, instead, they decided to stick a drain in it.
They stuck it in one lunchtime. You cannot imagine the smell, the miasma it created. Just the tiniest drop of pus would stink out a whole sheet. It really upset Mum. She was a very clean person, obsessed with food hygiene and the fact that molecules that could be smelled could be inhaled. The intention was to remove the tube, but this was impossible because first the infection kept filling back up, and second it was in a tumour. So, the tube stayed in and she had a 600ml capacity bag strapped to her leg. When it first went on, it fit perfectly. By the time she died, it flapped around and didn't fit to her leg at all. It was a very visual reminder of how much weight she had lost and how quickly.
She was terribly distressed about the smell, and the next morning, I was wracking my brains about what I could do for her to make her feel less violated. I found some travel Molton Brown bath gels and I took them into hospital, and bought some flannels. She couldn't have a bath or a shower with the drain in, so she chose the one she liked best and I put it on a flannel for her to smell instead of the drain. She liked White Sandalwood the best.
I had a travel sized pot of the white sandalwood moisturiser at home, so I took it round once she was home, and I spent a long time putting it on her. I'm not sure whether it was because she was chronically dehydrated, or the liver failure, or the immobility, but her skin cracked really badly and she hated it. The moisturiser helped a little bit. I ended up buying her a massive canister of the stuff as a reward for being so brave. As an early Christmas present. As an attempt to make her smile.
And so I spent the rest of her life gently stroking her with moisturiser, trying to restore some life to her dying skin, trying to keep in contact with her because I was afraid. I recall me, Jess and Sooz ALL moisturising her at once on occasion. She loved to be touched. She had trained as a massage and aromatherapist when I was young, and she had such an art when she gave you a massage. Jess has the same gift, but I do not. But I tried. And I'm not usually very physical, but I wanted to do something.
But as time went on, her skin became unbearably fragile and painful. I hurt her by accident so many times, because I got the pressure wrong. She would snap sometimes; she wanted us with her but she wanted to be alone. She sat in the garden, covered in fleeces, reading magazines, chainsmoking, and we would sit by her and try to read too, but not really taking in the words. I would try to stroke away the sloughing of her skin, the chafing of her frustration - only very occasionally expressed - and try to make her feel normal again.
After a while, she lost the feeling in her skin. We could touch her properly again, although I don't know if she could feel it. Dad could move her more easily. Whenever I was with her, when she couldn't have a conversation, which was most of the time, I reflexively reached for the moisturiser. I brushed her hair. I did the same things I do for my babies when they are poorly. I tried to show her how much I love her.
And now I will never ever be able to smell white sandalwood moisturiser again without smelling the bag of toxicity hanging from my mother's leg. Without smelling the hint of cigarette smoke that surrounded her right up to 48hrs before she died. Without feeling the cracked skin under my hands, desperately trying to rehydrate her by willpower alone. Without recalling the desperate urge to somehow stave off her death.
Which is a shame, because it was my favourite too.
16 Nov 2016
Funeral Blues
We said goodbye to Mum on a bright, clear day, at a church approaching its 900th year. Religious or not, there is a great comfort in waiting in a churchyard, knowing that this little ritual goes back centuries, knowing you aren't the first. Her coffin was bedecked in purple and red, a gift from my dad. Usually in church, we sat together towards the back with Mum in the centre, frowning at any giggles escaping, occasionally giving a stern 'church pinch' to restore order among the brood. But this time, she was at the front. And everyone who spoke spoke of her. Her faith. Her love. Her generosity. Her selfless spirit. Her hospitality.
I still can't find a way to talk about my mum, to bring my mum to life. I cannot draw with words her intricacies, her humour, her smile, her goodness, her love, because I don't think there are enough words.The words haven't been invented yet.
Afterwards, at the wake, we drank and laughed and exchanged stories and my mum would have loved it. She would have bought herself a small glass of red and got my dad to top it up out of a box in the car. She would have circulated through all her many relatives. She would have sneered slightly at the buffet, then told anyone and everyone present that she could have done it much better for half the price (and she could have done).
I think we did her proud. We did what she wanted. If she could have been there herself to check it all went off OK, she would have been. I think perhaps she was anyway. I felt her so strongly before we left the house to go to the funeral, I was just waiting for her to come in from having a cigarette and brush the fluff from Dad's collar. There, but not there.
And now there is a great period of adjustment. I have not cried for my mum. I feel like if I begin, I will never stop. Instead, I grieve piecemeal, always with one eye on the calendar. It has been three weeks since I last saw my mum alive, and two weeks and six days since I last saw her. It has been one month since I last spoke to my mum on the phone. It has been 36 days since she was last able to text me. It has been two months since I last cuddled her properly. It has been three months and three days since she was discharged from hospital. It has been three and a half months since she was first admitted. I can't yet mourn my mummy because I have not yet assimilated the shock and the pain of these three and a half months. We had our son christened, and my mum was pale and thin but herself, still catering, still gossiping, still socialising. And six days later, everything that was possible to change had changed.
This is something the vicar read at Mum's funeral, one of the things that Mum did not plan. I love it because my mum loved the sea, and the idea of her being just out of sight, just out of reach resonates with me more than anything. I can feel her with me, I just can't be with her yet. But one day, I will be.
I am standing upon the seashore. A ship, at my side, spreads her white sails to the moving breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until, at length, she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then, someone at my side says, "There, she is gone."
Gone where?
Gone from my sight. That is all. She is just as large in mast, hull and spar as she was when she left my side. And, she is just as able to bear her load of living freight to her destined port. Her diminished size is in me -- not in her.
And, just at the moment when someone says, "There, she is gone,"
there are other eyes watching her coming, and other voices ready to take up the glad shout, "Here she comes!"
And that is dying...
(wrongly attributed to Victor Hugo)
I still can't find a way to talk about my mum, to bring my mum to life. I cannot draw with words her intricacies, her humour, her smile, her goodness, her love, because I don't think there are enough words.The words haven't been invented yet.
Afterwards, at the wake, we drank and laughed and exchanged stories and my mum would have loved it. She would have bought herself a small glass of red and got my dad to top it up out of a box in the car. She would have circulated through all her many relatives. She would have sneered slightly at the buffet, then told anyone and everyone present that she could have done it much better for half the price (and she could have done).
I think we did her proud. We did what she wanted. If she could have been there herself to check it all went off OK, she would have been. I think perhaps she was anyway. I felt her so strongly before we left the house to go to the funeral, I was just waiting for her to come in from having a cigarette and brush the fluff from Dad's collar. There, but not there.
And now there is a great period of adjustment. I have not cried for my mum. I feel like if I begin, I will never stop. Instead, I grieve piecemeal, always with one eye on the calendar. It has been three weeks since I last saw my mum alive, and two weeks and six days since I last saw her. It has been one month since I last spoke to my mum on the phone. It has been 36 days since she was last able to text me. It has been two months since I last cuddled her properly. It has been three months and three days since she was discharged from hospital. It has been three and a half months since she was first admitted. I can't yet mourn my mummy because I have not yet assimilated the shock and the pain of these three and a half months. We had our son christened, and my mum was pale and thin but herself, still catering, still gossiping, still socialising. And six days later, everything that was possible to change had changed.
This is something the vicar read at Mum's funeral, one of the things that Mum did not plan. I love it because my mum loved the sea, and the idea of her being just out of sight, just out of reach resonates with me more than anything. I can feel her with me, I just can't be with her yet. But one day, I will be.
I am standing upon the seashore. A ship, at my side, spreads her white sails to the moving breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until, at length, she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then, someone at my side says, "There, she is gone."
Gone where?
Gone from my sight. That is all. She is just as large in mast, hull and spar as she was when she left my side. And, she is just as able to bear her load of living freight to her destined port. Her diminished size is in me -- not in her.
And, just at the moment when someone says, "There, she is gone,"
there are other eyes watching her coming, and other voices ready to take up the glad shout, "Here she comes!"
And that is dying...
(wrongly attributed to Victor Hugo)
29 Oct 2016
Our Mummy
Joanne Ruth Hudson
1961 - 2016
Mum died at home on Thursday. She hated it when we called her brave, but she was so brave. She bore her illness with a formidable will. She knew how she wanted her final weeks to play out, and she had the strength and courage to see that through. Mum was not afraid to die.
She kept her sense of humour throughout, from joking about catering her own wake, to giving us massive cheeky winks while barely conscious. She referred to her tumours as her 'woody lumps', and her innards as her evil doughnut. Nothing was beyond laughter.
It was an honour to be able to help care for her, to return some of the love and care she gave us.
I wanted to write about Mum's life, but I can't find the words. Words are not enough. Her life was not one marked out by events, but by a wellspring of love.
She is so beloved of so many. Her six older siblings, particularly her twin brother Nick. Her nineteen (I think) nieces and nephews, and their children and even grandchildren. All her friends. Mum loved to provide, whether it was love or food or a listening ear. She cared about everyone.
She married my dad in 1984, and they were best friends. A perfect fit. Dad has done absolutely everything in his power to look after Mum, for all her life and through to her death. He is a good man, a wonderful husband, a perfect dad. They have been a template for how a marriage should work, something to aspire to.
Mum and Dad, as you know, have raised a great brood of children. We are proud to be her children, proud to be made of the same strong stuff as her. Mum was mighty. I hope we can be half as mighty.
We have to find our way without her now, but together. She raised us to believe in love, and family, and togetherness, and forgiveness and we will honour that.
All your kind messages, your well wishes and your sympathy, all your love, has been gratefully accepted and passed on. Mum loved reading all the messages you sent. Thank you all so much. The sheer outpouring of love proves how special Mum was. I hope I've been able to convey a little bit of her wonder.
We love you Mummy
Mum loved Cromer, and she particularly loved the Cromer lifeboat. At Mum's request, there will be a collection for the RNLI at her funeral. If you would like to donate on her behalf, you can do so here.
10 Oct 2016
First, Smash Your Egg
Jon Snow has just written cancer on an egg, and smashed it with a cricket bat. This is how Channel 4 thinks you should stand up to cancer.
Smashing an egg doesn't reverse the mutations that lead to cancer.
Smashing an egg doesn't make cancer easier to spot.
Smashing an egg doesn't make money for cancer research.
Smashing an egg doesn't make people sign up for blood and bone marrow donation.
Smashing an egg doesn't do anything at all for Stage IV cancer.
(Stage IV cancer is "Sorry Mrs Hudson, there's nothing we can do" cancer.)
Smashing an egg is probably not going to make anyone frustrated with cancer feel better. It's a fucking egg. Smash up the china section of John Lewis after scrawling 'cancer' all over the plates, and you might feel a bit less frustrated*.
Smashing an egg doesn't do anything except get Jon Snow's face all over Twitter.
To quote, you know nothing Jon Snow.
Instead, take your egg. Boil it. When the water comes to the boil, put your toast in. When the toast pops, take your egg out, decapitate it, butter your toast thickly, sprinkle with salt and eat. That's a good and useful thing to do with an egg.
Perhaps I'm being sensitive. Mum's still dying. Who knew dying could be so difficult? What nobody tells you on these cancer adverts, on these smashed eggs, on these tits-out-for-cancer memes is that dying of cancer is hard.
My mum has lost around five stone, maybe more. My mum can't stay awake. My mum is in pain, despite strong opiates. My mum is chronically dehydrated. My mum can barely speak. My mum hurts.
My mum is so glad to be alive.
Three months ago, my mum was still at work.
Cancer is vicious. Cancer hurts. People you know are dying of it, and they maybe don't even know they have it. Cancer is terrifying. Cancer is not a smashed egg on the floor, looking for clicks and shares.
If you would like to do something genuinely useful for cancer, please consider:
Donating blood. Blood products are so useful in almost all cancer care.
Donating bone marrow. Some types of blood cancer can only be treated by bone marrow transplants. You won't be asked to donate unless you're a tissue match, so it's only spitting in a cup.
Donating to Macmillan in my mum's name. Macmillan nurses offer a lot of practical and emotional support, and also coordinate cancer care.
Donating to SecondHope who are researching treatment for Stage IV breast cancer
If you are in Lincolnshire, donating to St Barnabas Hospice who are helping Mum stay at home.
Donating to Cancer Research UK who have coordinated the Stand Up To Cancer campaign and for whom the initial egg was smashed in the first place.
Your money makes a difference. Cancer doesn't agree to give you a freebie cure in exchange for likes and shares.
* Please don't. Cancer doesn't get you out of criminal vandalism, alas.
Thanks for the nomination #StandUpToCancer. We're smashing cancer with a little help from @jonsnowC4. Over to you George, Fred, Tim & Simon pic.twitter.com/FoJKfV6xO9— Channel 4 (@Channel4) October 10, 2016
Smashing an egg doesn't reverse the mutations that lead to cancer.
Smashing an egg doesn't make cancer easier to spot.
Smashing an egg doesn't make money for cancer research.
Smashing an egg doesn't make people sign up for blood and bone marrow donation.
Smashing an egg doesn't do anything at all for Stage IV cancer.
(Stage IV cancer is "Sorry Mrs Hudson, there's nothing we can do" cancer.)
Smashing an egg is probably not going to make anyone frustrated with cancer feel better. It's a fucking egg. Smash up the china section of John Lewis after scrawling 'cancer' all over the plates, and you might feel a bit less frustrated*.
Smashing an egg doesn't do anything except get Jon Snow's face all over Twitter.
To quote, you know nothing Jon Snow.
Instead, take your egg. Boil it. When the water comes to the boil, put your toast in. When the toast pops, take your egg out, decapitate it, butter your toast thickly, sprinkle with salt and eat. That's a good and useful thing to do with an egg.
Perhaps I'm being sensitive. Mum's still dying. Who knew dying could be so difficult? What nobody tells you on these cancer adverts, on these smashed eggs, on these tits-out-for-cancer memes is that dying of cancer is hard.
My mum has lost around five stone, maybe more. My mum can't stay awake. My mum is in pain, despite strong opiates. My mum is chronically dehydrated. My mum can barely speak. My mum hurts.
My mum is so glad to be alive.
Three months ago, my mum was still at work.
Cancer is vicious. Cancer hurts. People you know are dying of it, and they maybe don't even know they have it. Cancer is terrifying. Cancer is not a smashed egg on the floor, looking for clicks and shares.
If you would like to do something genuinely useful for cancer, please consider:
Donating blood. Blood products are so useful in almost all cancer care.
Donating bone marrow. Some types of blood cancer can only be treated by bone marrow transplants. You won't be asked to donate unless you're a tissue match, so it's only spitting in a cup.
Donating to Macmillan in my mum's name. Macmillan nurses offer a lot of practical and emotional support, and also coordinate cancer care.
Donating to SecondHope who are researching treatment for Stage IV breast cancer
If you are in Lincolnshire, donating to St Barnabas Hospice who are helping Mum stay at home.
Donating to Cancer Research UK who have coordinated the Stand Up To Cancer campaign and for whom the initial egg was smashed in the first place.
Your money makes a difference. Cancer doesn't agree to give you a freebie cure in exchange for likes and shares.
* Please don't. Cancer doesn't get you out of criminal vandalism, alas.
24 Sept 2016
Cancer
Cancer is a fight. A battle. A conflict between the brave victim and the merciless disease. Cancer is a war to be won, or lost.
Cancer is often depicted as some insidious evil, worming its way inside, unseen. Like a horror film, the monster that crawls inside in the dead of night to burst out when least expected for shock value. Cancer, however, comes from within.
So what is cancer? Cancer is a vast collection of diseases that get put under the same umbrella because they all stem from the same root cause - some cells in the body go wrong.
You have a multitude of different cells in your body, and the majority multiply by splitting into two perfect copies of the original. The scope for this simple, taken for granted act to go wrong is enormous - one wrong protein in your nucleus and you've got something your body didn't plan for. Most of the time you, immune system will spot the error and kill the imposter. These irregular splits happen thousands of times a day and you're none the wiser.
Unless. Unless. Unless.
Mutations, for that is what they are called, build up over time. A slightly irregular cell doesn't get blasted by your immune system, it splits into two more slightly irregular cells, and so on and so on. This is why cancer becomes far more common with age - mutations have been building one on top of the other for years and years, and one day, something shifts and it goes from unusual cell patterns to a tumour.
Some substances make these mutations more likely. Smoking, drinking a lot, eating too much red meat, eating insufficent fibre, asbestos, etc etc. You've heard of everything causing cancer, I'm sure, and in some cases they're justified.
Some people have a genetic susceptibility to cancer. They have a gene fault that makes either the irregular cells as standard or that makes the irregular cells multiply far faster than normal. This is why people who have never smoked get lung cancer, and why people who have always smoked don't. This is why young people suddenly get cancer for no apparent reason. Genetic mutations in your DNA can be inherited (like the BRCA gene for breast and ovarian cancer) or you can develop them in utero. Perhaps cancer is simply stamped on our genetic template long before we are people.
There are only three treatments for cancer, and they're both simple and terribly complicated. You can cut a cancer out, provided it hasn't spread. You can burn a cancerous tumour away. You can poison your body, to kill the cancerous cells. A tumour removal can be a ten minute minor operation for a skin cancer, or it can be an intricate hours-long operation on your brain. There are as many types of chemotherapy as there are cancers, and some are designed to cure and some merely to buy time, and chemotherapy in itself is dangerous and often difficult. Radiotherapy is most useful in tumours that are difficult to get to, to burn away what couldn't be cut away. There are other treatments, particularly in reproductive cancers that are heavily influenced by hormones, but these are the big three.
We speak of curing cancer. We talk of wanting a day where nobody dies of cancer, where everyone can be treated and live forever. Cancer has existed as long as life has. It is the paradox, that what gives us life, this constant replication of cells, can kill us. The longer lifespan our species has, the more likely cancer becomes. We speak of hope, of treatment, of cure.
But we don't speak of what happens when there is no cure. We speak of those who have died, but not those who are dying. It hurts too much. It is difficult to admit there is nothing to be done. Cancer is always framed as this eternal battle between the darkness and the light, and when no cure or treatment is available, it is concealed, somehow wrong. Failing. Losing. Giving up. There must be SOMETHING that can be done? Surely, in this day and age, there is SOMETHING?
The nature of medical intervention changes. There are no treatment plans made, only plans for comfort. Suddenly home is a hospital - a hospital bed in the dining room, Class A drugs through the arm, syringe drivers under the stairs, medication that would fell an ox when previously she wouldn't take paracetamol for a headache.
My mum hasn't given up, even though we have known there would be very limited scope for treatment from the very start. She is doing everything she can to stay well, to recover from setbacks and to live properly through this. Our family cluster around. Those who can't ask for updates, but there are no updates people want to hear. It becomes harder to talk about, because we can't put the discourse in terms of What's Next treatment-wise. Sometimes, I wish she could have chemo just so I had something to tell people when they ask how she is. She's planned her funeral to the last detail, but what happens after that is the Mordor in the distance. We, her children, are attacked by grief at unpredictable times. Grief and rage and unfocused pain, but love and laughter, black humour and togetherness. Dying isn't the same as death. We can't imagine her absence while she is still so alive. We live in stasis, a bizarre limbo where there is no hope, only now. Only today.
Cancer is often depicted as some insidious evil, worming its way inside, unseen. Like a horror film, the monster that crawls inside in the dead of night to burst out when least expected for shock value. Cancer, however, comes from within.
So what is cancer? Cancer is a vast collection of diseases that get put under the same umbrella because they all stem from the same root cause - some cells in the body go wrong.
You have a multitude of different cells in your body, and the majority multiply by splitting into two perfect copies of the original. The scope for this simple, taken for granted act to go wrong is enormous - one wrong protein in your nucleus and you've got something your body didn't plan for. Most of the time you, immune system will spot the error and kill the imposter. These irregular splits happen thousands of times a day and you're none the wiser.
Unless. Unless. Unless.
Mutations, for that is what they are called, build up over time. A slightly irregular cell doesn't get blasted by your immune system, it splits into two more slightly irregular cells, and so on and so on. This is why cancer becomes far more common with age - mutations have been building one on top of the other for years and years, and one day, something shifts and it goes from unusual cell patterns to a tumour.
Some substances make these mutations more likely. Smoking, drinking a lot, eating too much red meat, eating insufficent fibre, asbestos, etc etc. You've heard of everything causing cancer, I'm sure, and in some cases they're justified.
Some people have a genetic susceptibility to cancer. They have a gene fault that makes either the irregular cells as standard or that makes the irregular cells multiply far faster than normal. This is why people who have never smoked get lung cancer, and why people who have always smoked don't. This is why young people suddenly get cancer for no apparent reason. Genetic mutations in your DNA can be inherited (like the BRCA gene for breast and ovarian cancer) or you can develop them in utero. Perhaps cancer is simply stamped on our genetic template long before we are people.
There are only three treatments for cancer, and they're both simple and terribly complicated. You can cut a cancer out, provided it hasn't spread. You can burn a cancerous tumour away. You can poison your body, to kill the cancerous cells. A tumour removal can be a ten minute minor operation for a skin cancer, or it can be an intricate hours-long operation on your brain. There are as many types of chemotherapy as there are cancers, and some are designed to cure and some merely to buy time, and chemotherapy in itself is dangerous and often difficult. Radiotherapy is most useful in tumours that are difficult to get to, to burn away what couldn't be cut away. There are other treatments, particularly in reproductive cancers that are heavily influenced by hormones, but these are the big three.
We speak of curing cancer. We talk of wanting a day where nobody dies of cancer, where everyone can be treated and live forever. Cancer has existed as long as life has. It is the paradox, that what gives us life, this constant replication of cells, can kill us. The longer lifespan our species has, the more likely cancer becomes. We speak of hope, of treatment, of cure.
But we don't speak of what happens when there is no cure. We speak of those who have died, but not those who are dying. It hurts too much. It is difficult to admit there is nothing to be done. Cancer is always framed as this eternal battle between the darkness and the light, and when no cure or treatment is available, it is concealed, somehow wrong. Failing. Losing. Giving up. There must be SOMETHING that can be done? Surely, in this day and age, there is SOMETHING?
The nature of medical intervention changes. There are no treatment plans made, only plans for comfort. Suddenly home is a hospital - a hospital bed in the dining room, Class A drugs through the arm, syringe drivers under the stairs, medication that would fell an ox when previously she wouldn't take paracetamol for a headache.
My mum hasn't given up, even though we have known there would be very limited scope for treatment from the very start. She is doing everything she can to stay well, to recover from setbacks and to live properly through this. Our family cluster around. Those who can't ask for updates, but there are no updates people want to hear. It becomes harder to talk about, because we can't put the discourse in terms of What's Next treatment-wise. Sometimes, I wish she could have chemo just so I had something to tell people when they ask how she is. She's planned her funeral to the last detail, but what happens after that is the Mordor in the distance. We, her children, are attacked by grief at unpredictable times. Grief and rage and unfocused pain, but love and laughter, black humour and togetherness. Dying isn't the same as death. We can't imagine her absence while she is still so alive. We live in stasis, a bizarre limbo where there is no hope, only now. Only today.
I write these blogs partly as release, but also to inform. We are collecting for Macmillan, but if you are in Lincolnshire, please also consider donating to St Barnabas Hospice whose nurses are currently looking after Mum at home.
15 Sept 2016
Life
Quality of life is difficult to define. In conversation, particularly when discussing degenerative illnesses like dementia, you often hear phrases like "I wouldn't want to live like that", sometimes to the point of being asked to be euthanised if they occur. Nobody wants to suffer. Suffering looks awful.
There are scales that are used to try and quantify what constitutes a life worth living, mainly as a way of channelling resources into palliative and end of life care. It should be noted that palliative care is any care that is intended to provide comfort rather than cure and can be offered alongside curative treatment, whereas end of life care means just what it says. Many people who are disabled or seriously ill may find that they have no quality of life according to these scales.
When discussing the theory of quality of life, what tends to be discussed is what makes people feel they are experiencing good quality lives, rather than focusing on the physical limitations they may have. These things tend to change throughout the life course, and are usually classified as hedonic (focused on immediate pleasure) and eudaimonic (focused on long term fufilment). I find my children immensely important to my quality of life in a way that my teenage sibling does not, indeed cannot. Fifteen years ago, my quality of life depended solely on my ability to be able to go out and get ratted. That is...slightly less the case now. Then you can take wider environmental concerns into accounts; things like living in a decent quality house, being able to find work, living in a low-crime area. It's difficult to have good quality of life living somewhere that makes you frightened. It's difficult to have a good quality of life if your main goal is wealth but you are poor. It's difficult to have a good quality of life is you are not able to do what you want through disability or illness. Quality of life is a multifaceted idea that can't really be quantified. Though, sociology being what it is, they keep trying.
My mum's quality of life at the moment is objectively crap. She can't eat much. She's mainly confined to bed. She's on some hardcore pain relief. Using the various oncology ratings for quality of life, she scores very poorly. She has hospice nurses coming in to cast their knowing eye over her medication and help support my dad. She has district nurses coming too, for clinical care. It would be very easy to look at her life at the moment and sadly shake your head and sigh at how bad she must feel.
You'd be dead wrong.
She has my dad. My mum and dad have been married for almost 32 years. They weren't together long before they got married, and I daresay a few people shook their heads and muttered that it wouldn't last, but it has. They are still in love, still in tune, still in harmony.
They have seven kids. Seven! They have nearly ten grandchildren, and some of their children haven't even got started yet (we breed like Weasleys). And believe me, if our love could heal, she'd be fine.
She has her twin back, which has completed her.
She lies in the garden, come rain or shine, with a cigarette in one hand and a book in the other, plumped up on cushions and watching the birds (or sometimes, the cat EATING the birds). When it gets dark, Dad puts on the fairy lights and she lays in her grotto and she's happy. Tired, sometimes in pain, but happy.
Cancer has stripped away most of the stresses of life. Now she is living for now, with no eye on some future anxiety, with no grief for what she cannot have. She is not afraid. She has faith in God and believes that she will go on.
The day I found out Mum had cancer, my friend (unknowingly) shared this poem on twitter and as I have watched Mum come home from hospital and take root in the garden, it becomes more and more apt.
There are scales that are used to try and quantify what constitutes a life worth living, mainly as a way of channelling resources into palliative and end of life care. It should be noted that palliative care is any care that is intended to provide comfort rather than cure and can be offered alongside curative treatment, whereas end of life care means just what it says. Many people who are disabled or seriously ill may find that they have no quality of life according to these scales.
When discussing the theory of quality of life, what tends to be discussed is what makes people feel they are experiencing good quality lives, rather than focusing on the physical limitations they may have. These things tend to change throughout the life course, and are usually classified as hedonic (focused on immediate pleasure) and eudaimonic (focused on long term fufilment). I find my children immensely important to my quality of life in a way that my teenage sibling does not, indeed cannot. Fifteen years ago, my quality of life depended solely on my ability to be able to go out and get ratted. That is...slightly less the case now. Then you can take wider environmental concerns into accounts; things like living in a decent quality house, being able to find work, living in a low-crime area. It's difficult to have good quality of life living somewhere that makes you frightened. It's difficult to have a good quality of life if your main goal is wealth but you are poor. It's difficult to have a good quality of life is you are not able to do what you want through disability or illness. Quality of life is a multifaceted idea that can't really be quantified. Though, sociology being what it is, they keep trying.
My mum's quality of life at the moment is objectively crap. She can't eat much. She's mainly confined to bed. She's on some hardcore pain relief. Using the various oncology ratings for quality of life, she scores very poorly. She has hospice nurses coming in to cast their knowing eye over her medication and help support my dad. She has district nurses coming too, for clinical care. It would be very easy to look at her life at the moment and sadly shake your head and sigh at how bad she must feel.
You'd be dead wrong.
She has my dad. My mum and dad have been married for almost 32 years. They weren't together long before they got married, and I daresay a few people shook their heads and muttered that it wouldn't last, but it has. They are still in love, still in tune, still in harmony.
They have seven kids. Seven! They have nearly ten grandchildren, and some of their children haven't even got started yet (we breed like Weasleys). And believe me, if our love could heal, she'd be fine.
She has her twin back, which has completed her.
She lies in the garden, come rain or shine, with a cigarette in one hand and a book in the other, plumped up on cushions and watching the birds (or sometimes, the cat EATING the birds). When it gets dark, Dad puts on the fairy lights and she lays in her grotto and she's happy. Tired, sometimes in pain, but happy.
Cancer has stripped away most of the stresses of life. Now she is living for now, with no eye on some future anxiety, with no grief for what she cannot have. She is not afraid. She has faith in God and believes that she will go on.
The day I found out Mum had cancer, my friend (unknowingly) shared this poem on twitter and as I have watched Mum come home from hospital and take root in the garden, it becomes more and more apt.
The Peace of Wild Things by Wendell Berry
When despair grows in me
and I wake in the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds,
I come into the peace of wild things
who do not take their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting for their light. For a time
I rest in the grace of the world, and am free.
30 Aug 2016
Not Normal
What is normal?
This isn't.
I got the kids' school stuff together. No stress, no panic, just sorted it out, tried it on them, put it away ready for next week. Back to school. Back to normal. Except it's not normal.
I went to see my in laws. The kids ran amok. We had a barbecue, I had a glass of wine. Everything normal. Nothing's normal.
I went to see my mum. Roast beef in the oven, nephews and nieces underfoot, sitting in the garden with Mum puffing on a cigarette, cookbook by her side. All as normal. Anything but.
The hospital runs, every week. Mum afraid, fed up, nauseous, worried, sick of waiting. The waiting. It goes on forever. We sit together, usually in a side room because Mum's too ill to sit up for long. Mum doesn't look when they do the blood tests, so I tell her when it's safe to look. I surreptitiously check her obs on the machine. Maybe I should have been a nurse. We wait for the consultant - she's lovely. We ask questions. No answers yet. They don't know where the primary site is. They are worried about the infection. No chemo til the infection's sorted. No oncology at all until the infection's sorted. They can't save Mum from the cancer. Can they even save her from the infection? We don't know. We wait for the blood tests. They do them while you wait, but it's still two hours. They return with the results. Usually bad news. Usually more worry. Usually no answers.
And yet that is when I feel most normal, most at peace. That is where I can cope. In the thick of it, surrounded by people who may not have the answers but know what they're talking about, who aren't afraid of what's happening and don't use euphemism. Where I'm with my mum, looking after my mum. Making myself feel better by making her feel better. I've always felt strangely at home in hospitals. Maybe I could have been a nurse.
I have nightmares where I fail to look after Mum, in some tiny insignificant way, but it ends up meaning everything, so I don't go to bed because I'm scared of dreaming. I see old people in the street and I resent them for being alive. I hear people bitch about their mums, and I want to scream because it's not fair. I see people being normal, being happy, being unaffected by strange crushing not-quite-grief and I wonder if I will ever feel like that again. All the peculiarities of human interaction, all the minor disagreements and trivialities of life, have lost resonance and meaning.
Mum was diagnosed a month ago today. It feels like it's been a thousand years and three hours all at once.
The only people I want to be with, household and parents aside, are my siblings because they know how this is. We all cope differently. We all feel the same. Thank god there's so many of us. Thank god we can be together.
I'm not writing for sympathy, or anything really other than to get this out. This feeling that nothing in the world feels normal anymore. Everything is wrong, like someone put a puzzle together higgeldy piggeldy and all the pieces fit but the picture doesn't make sense.
I love my mum. I wish I could keep her.
We are fundraising for Macmillan, because they are wonderful.
This isn't.
I got the kids' school stuff together. No stress, no panic, just sorted it out, tried it on them, put it away ready for next week. Back to school. Back to normal. Except it's not normal.
I went to see my in laws. The kids ran amok. We had a barbecue, I had a glass of wine. Everything normal. Nothing's normal.
I went to see my mum. Roast beef in the oven, nephews and nieces underfoot, sitting in the garden with Mum puffing on a cigarette, cookbook by her side. All as normal. Anything but.
The hospital runs, every week. Mum afraid, fed up, nauseous, worried, sick of waiting. The waiting. It goes on forever. We sit together, usually in a side room because Mum's too ill to sit up for long. Mum doesn't look when they do the blood tests, so I tell her when it's safe to look. I surreptitiously check her obs on the machine. Maybe I should have been a nurse. We wait for the consultant - she's lovely. We ask questions. No answers yet. They don't know where the primary site is. They are worried about the infection. No chemo til the infection's sorted. No oncology at all until the infection's sorted. They can't save Mum from the cancer. Can they even save her from the infection? We don't know. We wait for the blood tests. They do them while you wait, but it's still two hours. They return with the results. Usually bad news. Usually more worry. Usually no answers.
And yet that is when I feel most normal, most at peace. That is where I can cope. In the thick of it, surrounded by people who may not have the answers but know what they're talking about, who aren't afraid of what's happening and don't use euphemism. Where I'm with my mum, looking after my mum. Making myself feel better by making her feel better. I've always felt strangely at home in hospitals. Maybe I could have been a nurse.
I have nightmares where I fail to look after Mum, in some tiny insignificant way, but it ends up meaning everything, so I don't go to bed because I'm scared of dreaming. I see old people in the street and I resent them for being alive. I hear people bitch about their mums, and I want to scream because it's not fair. I see people being normal, being happy, being unaffected by strange crushing not-quite-grief and I wonder if I will ever feel like that again. All the peculiarities of human interaction, all the minor disagreements and trivialities of life, have lost resonance and meaning.
Mum was diagnosed a month ago today. It feels like it's been a thousand years and three hours all at once.
The only people I want to be with, household and parents aside, are my siblings because they know how this is. We all cope differently. We all feel the same. Thank god there's so many of us. Thank god we can be together.
I'm not writing for sympathy, or anything really other than to get this out. This feeling that nothing in the world feels normal anymore. Everything is wrong, like someone put a puzzle together higgeldy piggeldy and all the pieces fit but the picture doesn't make sense.
I love my mum. I wish I could keep her.
We are fundraising for Macmillan, because they are wonderful.
23 Aug 2016
If
If we acknowledged that every time we saw someone, it could be the last.
If we put that much meaning and significance into every encounter, every quick chat, every hug.
If we recognised the ubiquity and unpredictability of death.
We would all go mad.
It's not sustainable. It's something we all unconsciously reject day in day out, because it is too painful. Imagine. There would be no such thing as a quick phone call, no such thing as 'just popping in', no such thing as a nod and a smile in Tesco. Every "see you later" would become racked with meaning and significance. We would all go mad.
My mum could have easily died three and a half weeks ago. In fact, protocol dictated that is what should have happened, but thankfully Mum's surgeon decided to turn a blind eye to the shadows on the xray and save her anyway. We consider this 'extra life' that she's been granted a huge boon, and we are so grateful to the team at Scarborough Hospital for doing us that enormous service. But it is not going to last long.
The greatest thing that has come out of it is that Mum can see how much she is loved. How deeply, how extensively she is loved. How many lives she has touched, how many people adore her and admire her. Too often we leave it too late to let people know how much we love them, tearfully gathering at the graveside with regrets, wondering years later why we never took the time when we had the time. You always think you will have more time.
Mum has the privilege of experiencing her posthumous tributes while she is still here to enjoy them, and she loves it. She has stopped batting away compliments.
Meanwhile, we have the privilege of being able to concentrate all our love and care on her as she has always given it to us.
This week, we have reunited with family we haven't seen in decades, and my mum is so overwhelmingly happy. It's a strange paradox, that this awful time makes us all so happy. Sometimes, I feel as though I'm full of wet sand and I can't breathe because I'm so afraid and so upset. Mostly, I am emotional yet joyful that Mum is still here, still baffling the doctors, still joking and giving out recipes, and making enormous lasagne, still full of love, still here. Still here.
I told my older children that Granny isn't going to get better yesterday, and that was difficult. Difficult enough, but when you have to take all the calming euphemism out of it for an autistic child, more difficult. And they told me that as long as we remember her, she will never leave us. I expect they heard it on a TV show, but they're right. We continue to make memories, (which is a phrase I FUCKING HATE under normal circumstances), to take photos, to be together while we can.
I don't really have a point today except to encourage you to tell your family you love them while you can. Maybe you already do tell them. Maybe you think they already know. Maybe you don't see them as often as you'd like. Maybe you don't have the words. Just tell them. Regret is so much more painful than embarrassment.
And please donate to Macmillan if you are able and want to do something help.
If we put that much meaning and significance into every encounter, every quick chat, every hug.
If we recognised the ubiquity and unpredictability of death.
We would all go mad.
It's not sustainable. It's something we all unconsciously reject day in day out, because it is too painful. Imagine. There would be no such thing as a quick phone call, no such thing as 'just popping in', no such thing as a nod and a smile in Tesco. Every "see you later" would become racked with meaning and significance. We would all go mad.
My mum could have easily died three and a half weeks ago. In fact, protocol dictated that is what should have happened, but thankfully Mum's surgeon decided to turn a blind eye to the shadows on the xray and save her anyway. We consider this 'extra life' that she's been granted a huge boon, and we are so grateful to the team at Scarborough Hospital for doing us that enormous service. But it is not going to last long.
The greatest thing that has come out of it is that Mum can see how much she is loved. How deeply, how extensively she is loved. How many lives she has touched, how many people adore her and admire her. Too often we leave it too late to let people know how much we love them, tearfully gathering at the graveside with regrets, wondering years later why we never took the time when we had the time. You always think you will have more time.
Mum has the privilege of experiencing her posthumous tributes while she is still here to enjoy them, and she loves it. She has stopped batting away compliments.
Meanwhile, we have the privilege of being able to concentrate all our love and care on her as she has always given it to us.
This week, we have reunited with family we haven't seen in decades, and my mum is so overwhelmingly happy. It's a strange paradox, that this awful time makes us all so happy. Sometimes, I feel as though I'm full of wet sand and I can't breathe because I'm so afraid and so upset. Mostly, I am emotional yet joyful that Mum is still here, still baffling the doctors, still joking and giving out recipes, and making enormous lasagne, still full of love, still here. Still here.
I told my older children that Granny isn't going to get better yesterday, and that was difficult. Difficult enough, but when you have to take all the calming euphemism out of it for an autistic child, more difficult. And they told me that as long as we remember her, she will never leave us. I expect they heard it on a TV show, but they're right. We continue to make memories, (which is a phrase I FUCKING HATE under normal circumstances), to take photos, to be together while we can.
I don't really have a point today except to encourage you to tell your family you love them while you can. Maybe you already do tell them. Maybe you think they already know. Maybe you don't see them as often as you'd like. Maybe you don't have the words. Just tell them. Regret is so much more painful than embarrassment.
And please donate to Macmillan if you are able and want to do something help.
14 Aug 2016
Talking About Terminal Cancer
Behold, the shitty cancer awareness memes are going round on Facebook once more. Spread awareness with a heart in your status, say people who have probably never actually had to talk to people with cancer.
Conversations are a bit strange when someone you love has terminal cancer - gawd knows what it's like for someone who HAS terminal cancer. Here's a guide on how to talk to me, but I am not representative.
1. Please don't ask how my mum is unless you want the answer.
There isn't going to be a "Yeah, she's fantastic" response. If you can't deal with being told "Same" or "worse", please don't ask. There are other things we can talk about (see point 3).
2. Please don't ask, with any degree of intensity, how I am REALLY.
I don't know how I am 99% of the time. Somewhere vaguely between euphoric she's still alive and devastated at the sheer fucking awfulness of everything. If I tell you I'm fine, it either means I don't want to talk about it, or I actually AM FINE, as BIZARRE as that might seen.
3. Cancer gets boring
You'd never have thought the idea of losing someone you adore would get dull. In the first week after Mum was diagnosed, I think I had to explain it in detail to about ten people who weren't directly affected. Not because they were being nosy; they just couldn't fathom how This Could Happen, so they wanted detail. Painstaking, surgical detail at times. Being me, I was happy to give it, but LORD IT IS HARD and then it just gets boring. This is what our new reality is, but I am still the same person and I don't just want to talk about the scary thing that's happening.
4. Please don't tell me about anyone you know (or knew) with cancer, unless it's a parent or similarly close relative.
Thanks for the info, but I guessed cancer wasn't solely restricting itself to hurting my mum. I've lost two grandparents, my best friend from when I was five, and numerous other people to cancer. I know millions of people are afflicted. I know it's shit. I know it's vicious. I know it's unpredictable. It's also not an exercise in comparison.
5. Please don't tell me about people who Miraculously Recovered.
This is so unlikely and rare that I just find it annoying rather than comforting.
6. If you don't know how to deal with it, that's fine.
Honestly. I get it. Watching sad adverts on the telly and donating to everyone on Facebook's Race For Life pages is one thing. Actually being faced with the reality is terrifying. Maybe people think I will just sob uncontrollably into their shoulder, or be cross they asked how I am, or I dunno, have a full on nervo. I don't expect answers. I don't expect to feel magically better any time soon. If you don't know how to deal with it (or me), it's probably not your job to so please don't worry about it.
7. I know you don't know what to say
Unthinkable though it seems, the shoe has been on the other foot. I've been told people are terminally ill before, and not had a clue what to say. What can you say? There's no Please Die Nicely cards in Clintons. I know it's shit. It's fine to say it's shit.
8. Please don't offer help unless you are willing to give it
I know you want to help, but there's a vast difference between saying "If there's anything I can do" and actually looking after my children for seven hours. If you can, offer specific help. Lifts. Food. Company. Babysitting. That sort of thing. Otherwise, please donate to Macmillan for us, because they offer so much practical support, and take away some of the fear.
9. Don't hate me or take it personally if I'm grumpy or quiet or reclusive or angry or anything other than shitting sunbeams
I can't predict my mood. On the day I wrote this, I cried because people were nice, cried because Christmas might be shit, cried because everything in the future might be shit, shouted at the kids, had perfectly polite conversations with strangers, jumped out of my skin because someone knocked on the door, cried some more, text people until I was too tired to, and shouted some more. I am also still capable of pissing myself laughing, being extremely dark humoured, and full of love for everyone around me. I'm still a contrary, argumentative bitch. Mum's illness is like a knife to my heart every time I remember it, but death is a massive part of the fabric of life.
I don't hate cancer. I'm not going to start sharing those "99% of people don't hate cancer but I know you're not one of them" memes on facebook. Cancer is a terrifying prospect: the word alone scares the shit out of many people, but it is also part of the joy of living. Cancer is a cellular disease that we all carry the potential to develop. Our cells divide at a rate of around 50 billion PER DAY. It is a miracle to me that it doesn't go wrong all the time. Cancer is as old as humanity. There are thousands of different types: some kill you, some barely bother you. It is shit that Mum's developed a lethal kind, but at the same time, in the lottery of life, I think (and she thinks) that she's done OK out of it. All this love for her, all these amazing memories that we continue to make, all these Actual People She Has Made. Half of me is my mum. In every one of the billions of cells in my body, half the DNA telling that cell what to do is my mum. And my mum WOULD tell every one of my cells what to do.
Conversations are a bit strange when someone you love has terminal cancer - gawd knows what it's like for someone who HAS terminal cancer. Here's a guide on how to talk to me, but I am not representative.
1. Please don't ask how my mum is unless you want the answer.
There isn't going to be a "Yeah, she's fantastic" response. If you can't deal with being told "Same" or "worse", please don't ask. There are other things we can talk about (see point 3).
2. Please don't ask, with any degree of intensity, how I am REALLY.
I don't know how I am 99% of the time. Somewhere vaguely between euphoric she's still alive and devastated at the sheer fucking awfulness of everything. If I tell you I'm fine, it either means I don't want to talk about it, or I actually AM FINE, as BIZARRE as that might seen.
3. Cancer gets boring
You'd never have thought the idea of losing someone you adore would get dull. In the first week after Mum was diagnosed, I think I had to explain it in detail to about ten people who weren't directly affected. Not because they were being nosy; they just couldn't fathom how This Could Happen, so they wanted detail. Painstaking, surgical detail at times. Being me, I was happy to give it, but LORD IT IS HARD and then it just gets boring. This is what our new reality is, but I am still the same person and I don't just want to talk about the scary thing that's happening.
4. Please don't tell me about anyone you know (or knew) with cancer, unless it's a parent or similarly close relative.
Thanks for the info, but I guessed cancer wasn't solely restricting itself to hurting my mum. I've lost two grandparents, my best friend from when I was five, and numerous other people to cancer. I know millions of people are afflicted. I know it's shit. I know it's vicious. I know it's unpredictable. It's also not an exercise in comparison.
5. Please don't tell me about people who Miraculously Recovered.
This is so unlikely and rare that I just find it annoying rather than comforting.
6. If you don't know how to deal with it, that's fine.
Honestly. I get it. Watching sad adverts on the telly and donating to everyone on Facebook's Race For Life pages is one thing. Actually being faced with the reality is terrifying. Maybe people think I will just sob uncontrollably into their shoulder, or be cross they asked how I am, or I dunno, have a full on nervo. I don't expect answers. I don't expect to feel magically better any time soon. If you don't know how to deal with it (or me), it's probably not your job to so please don't worry about it.
7. I know you don't know what to say
Unthinkable though it seems, the shoe has been on the other foot. I've been told people are terminally ill before, and not had a clue what to say. What can you say? There's no Please Die Nicely cards in Clintons. I know it's shit. It's fine to say it's shit.
8. Please don't offer help unless you are willing to give it
I know you want to help, but there's a vast difference between saying "If there's anything I can do" and actually looking after my children for seven hours. If you can, offer specific help. Lifts. Food. Company. Babysitting. That sort of thing. Otherwise, please donate to Macmillan for us, because they offer so much practical support, and take away some of the fear.
9. Don't hate me or take it personally if I'm grumpy or quiet or reclusive or angry or anything other than shitting sunbeams
I can't predict my mood. On the day I wrote this, I cried because people were nice, cried because Christmas might be shit, cried because everything in the future might be shit, shouted at the kids, had perfectly polite conversations with strangers, jumped out of my skin because someone knocked on the door, cried some more, text people until I was too tired to, and shouted some more. I am also still capable of pissing myself laughing, being extremely dark humoured, and full of love for everyone around me. I'm still a contrary, argumentative bitch. Mum's illness is like a knife to my heart every time I remember it, but death is a massive part of the fabric of life.
I don't hate cancer. I'm not going to start sharing those "99% of people don't hate cancer but I know you're not one of them" memes on facebook. Cancer is a terrifying prospect: the word alone scares the shit out of many people, but it is also part of the joy of living. Cancer is a cellular disease that we all carry the potential to develop. Our cells divide at a rate of around 50 billion PER DAY. It is a miracle to me that it doesn't go wrong all the time. Cancer is as old as humanity. There are thousands of different types: some kill you, some barely bother you. It is shit that Mum's developed a lethal kind, but at the same time, in the lottery of life, I think (and she thinks) that she's done OK out of it. All this love for her, all these amazing memories that we continue to make, all these Actual People She Has Made. Half of me is my mum. In every one of the billions of cells in my body, half the DNA telling that cell what to do is my mum. And my mum WOULD tell every one of my cells what to do.
9 Aug 2016
Mum
This blog has been written with the full consent of both my parents. My mum would love to read any (nice) comments or messages you would like to leave, either on here or twitter/facebook.
Food is inextricably linked to both memory and comfort. What's the best thing you've ever eaten? This isn't a question where the answer is likely to be "the tasting menu at The Fat Duck" or "lunch at Le Manoir aux Quat'Saisons" (though Lord knows I wish it was). This is likely to be a question where the answer is so personal it's almost secretive. An answer that requires all the senses and memory. An answer that won't necessarily tally up to anyone else's idea of a good meal.
Christmas dinner when I was about 7 and still believed in Santa, high on the magic of the thing, eating in the dining room by candlelight as it slowly got dark, with fairy lights and people everywhere. Every Christmas dinner for that matter, especially the one when my kids gave me a round of applause afterwards, even though most of it came from Messrs Marks and Spencer.
Soft beetroot sandwiches in the old van - not like a people carrier, but a Transit with seats bolted in the back, the only thing we'd all fit in - on the way to the seaside, where more beetroot sandwiches and squash awaited.
Chips in the back of that same van. Chips that I didn't like because, for some reason, I had a mortal hatred of them until I was about 14. I used to eat monstrosities like pineapple fritters to avoid the horror of chips. On holiday, we would sing all the way back to the caravan at the tops of our lungs, full of chips and warm coke from a sandy plastic cup.
Then later, much later, a massive cheese toastie, a kitkat and a pint of tea, after a night of illicit drinking down the Wellhead.
My mum's roast beef dinner, with all the trimmings and homemade cheese sauce. A meal to revive the soul. A meal I won't get to eat many more times.
My mummy is going to die.
We all know our parents will die. We have that factual knowledge, because that is what happens. Death is the trade off for life. Everyone dies, hopefully in a generational order. It is the right way of things. We reach adulthood under the care of our parents, and then the caring reverses (eventually) and we look after our parents as they die.
But really, we all think our parents are immortal. We think we will have them with us until we are old ourselves, and being old ourselves is such a distant concept that it translates to near-immortality. We've heard the statistics. We see the Macmillan cancer adverts on TV. We know so-and-so's daughter died of cancer when she was only 15, 25, or 40. But until it happens to you, you do not think your parents will die until YOU are ready for it to happen.
My mum found out she had cancer in an unusual, and quite dramatic way, after a few weeks of illness explained away by other causes. She says she's had a good idea about it for a while, but was afraid to get it confirmed. Afraid of the tests, and the internal prodding, and waiting for the results, and the grave consultations. So, instead, she waited until all hell broke loose within and found out off her merry head on morphine in an ICU, far from home. Her official diagnosis is metastatic ovarian cancer. She prefers to simply say she's dying. We don't know how long she has left yet.
But, we will have no false hope here. No platitudes. No denial. There will be no mad dashes to America for some bizarre, unproven treatment.
What we will do is look after her. My mum has had a lot of babies. Our ages range from 37 to 15. She has an army of carers, not least my wonderful dad. The joy of a big family is that when this happens, it's not one or two of you bleakly staring at each other over a deathbed; it's a platoon of you giggling over memories, being able to take over and stop each other getting too exhausted. It's a web of support that you don't need to go and look for, with different skills and styles of care. Mum doesn't want to be in hospital, surrounded by strangers. She wants to be at home with us, so she will be.
But back to food. My mum has been cooking professionally for years, mainly in care homes but also for weddings, parties, christenings and wakes. If you've been to a family 'do, you've probably eaten Mum's sandwiches. If you haven't, then you are Missing Out. Her illness has recently meant she's stopped enjoying food, because she hasn't been able to eat. She's even stopped thinking about food.
I can't think of my mum without thinking about food. This is a woman who's most common phrase is "GET OUT OF MY TRIANGLE", meaning sink/oven/surface. A woman who once, halfway through a family quiz, fell asleep until the question "How do you make a roux?" came up. She opened her eyes, recited the ingredients, and went straight back to sleep. She taught me how to roast a chicken, how to poach eggs properly, and how to manage a kitchen. She has been bulk catering regularly since about 1990. She gave me my own obsession with cooking books - I used to read her hideous 80s cooking magazine collection as a small - and then plundered it to read herself.
I can't eat now. It's not exactly grief because she's not dead, and we shouldn't waste our time wailing about her being dead until she actually is. It's a grief for the future that would have been, if this disease hadn't happened. It's a selfish grief for the imminent loss of such a wealth of advice (particularly with parenting) and love and care. It's fear. It's a little disbelief because how? She's 54. I thought I might get another twenty years, at least. I can't imagine myself without her.
Let me tell you something about my mummy. She is as strong as an ox. She has given birth to eight babies (my tiny brother Thomas didn't make it) and never had pain relief - one of us weighed nearly 11lb. She has had this cancer for an unknown amount of time, long enough for it to really take hold, and carried on working full time and caring for her home and children. She has coped with her parents dying, with having all these children, with all our dramas - god there's been some dramas -with faith and humour. She has had an acute life-threatening illness and dangerous operation that would have killed less hardy people and sailed through it. She laid in her hospital bed, still very physically unwell, bitching merrily about everything, expecting my dad to be psychic, totally her normal self (aside from immediately after morphine when she started asking about Uboats and hearing tingling). She has taken this awful news on the chin, with black jokes and sorrow and love. She says she's not strong. She says she's not brave. She says she's a coward or she would have gone and got it sorted out before. She is wrong. My mum is being strong and brave and an example to us all.
Mum has requested that, if you feel inclined to do something and can afford to, that you please donate to Macmillan Cancer Support through this link. They are truly being wonderful at the moment.
Food is inextricably linked to both memory and comfort. What's the best thing you've ever eaten? This isn't a question where the answer is likely to be "the tasting menu at The Fat Duck" or "lunch at Le Manoir aux Quat'Saisons" (though Lord knows I wish it was). This is likely to be a question where the answer is so personal it's almost secretive. An answer that requires all the senses and memory. An answer that won't necessarily tally up to anyone else's idea of a good meal.
Christmas dinner when I was about 7 and still believed in Santa, high on the magic of the thing, eating in the dining room by candlelight as it slowly got dark, with fairy lights and people everywhere. Every Christmas dinner for that matter, especially the one when my kids gave me a round of applause afterwards, even though most of it came from Messrs Marks and Spencer.
Soft beetroot sandwiches in the old van - not like a people carrier, but a Transit with seats bolted in the back, the only thing we'd all fit in - on the way to the seaside, where more beetroot sandwiches and squash awaited.
Chips in the back of that same van. Chips that I didn't like because, for some reason, I had a mortal hatred of them until I was about 14. I used to eat monstrosities like pineapple fritters to avoid the horror of chips. On holiday, we would sing all the way back to the caravan at the tops of our lungs, full of chips and warm coke from a sandy plastic cup.
Then later, much later, a massive cheese toastie, a kitkat and a pint of tea, after a night of illicit drinking down the Wellhead.
My mum's roast beef dinner, with all the trimmings and homemade cheese sauce. A meal to revive the soul. A meal I won't get to eat many more times.
My mummy is going to die.
We all know our parents will die. We have that factual knowledge, because that is what happens. Death is the trade off for life. Everyone dies, hopefully in a generational order. It is the right way of things. We reach adulthood under the care of our parents, and then the caring reverses (eventually) and we look after our parents as they die.
But really, we all think our parents are immortal. We think we will have them with us until we are old ourselves, and being old ourselves is such a distant concept that it translates to near-immortality. We've heard the statistics. We see the Macmillan cancer adverts on TV. We know so-and-so's daughter died of cancer when she was only 15, 25, or 40. But until it happens to you, you do not think your parents will die until YOU are ready for it to happen.
My mum found out she had cancer in an unusual, and quite dramatic way, after a few weeks of illness explained away by other causes. She says she's had a good idea about it for a while, but was afraid to get it confirmed. Afraid of the tests, and the internal prodding, and waiting for the results, and the grave consultations. So, instead, she waited until all hell broke loose within and found out off her merry head on morphine in an ICU, far from home. Her official diagnosis is metastatic ovarian cancer. She prefers to simply say she's dying. We don't know how long she has left yet.
But, we will have no false hope here. No platitudes. No denial. There will be no mad dashes to America for some bizarre, unproven treatment.
What we will do is look after her. My mum has had a lot of babies. Our ages range from 37 to 15. She has an army of carers, not least my wonderful dad. The joy of a big family is that when this happens, it's not one or two of you bleakly staring at each other over a deathbed; it's a platoon of you giggling over memories, being able to take over and stop each other getting too exhausted. It's a web of support that you don't need to go and look for, with different skills and styles of care. Mum doesn't want to be in hospital, surrounded by strangers. She wants to be at home with us, so she will be.
But back to food. My mum has been cooking professionally for years, mainly in care homes but also for weddings, parties, christenings and wakes. If you've been to a family 'do, you've probably eaten Mum's sandwiches. If you haven't, then you are Missing Out. Her illness has recently meant she's stopped enjoying food, because she hasn't been able to eat. She's even stopped thinking about food.
I can't think of my mum without thinking about food. This is a woman who's most common phrase is "GET OUT OF MY TRIANGLE", meaning sink/oven/surface. A woman who once, halfway through a family quiz, fell asleep until the question "How do you make a roux?" came up. She opened her eyes, recited the ingredients, and went straight back to sleep. She taught me how to roast a chicken, how to poach eggs properly, and how to manage a kitchen. She has been bulk catering regularly since about 1990. She gave me my own obsession with cooking books - I used to read her hideous 80s cooking magazine collection as a small - and then plundered it to read herself.
I can't eat now. It's not exactly grief because she's not dead, and we shouldn't waste our time wailing about her being dead until she actually is. It's a grief for the future that would have been, if this disease hadn't happened. It's a selfish grief for the imminent loss of such a wealth of advice (particularly with parenting) and love and care. It's fear. It's a little disbelief because how? She's 54. I thought I might get another twenty years, at least. I can't imagine myself without her.
Let me tell you something about my mummy. She is as strong as an ox. She has given birth to eight babies (my tiny brother Thomas didn't make it) and never had pain relief - one of us weighed nearly 11lb. She has had this cancer for an unknown amount of time, long enough for it to really take hold, and carried on working full time and caring for her home and children. She has coped with her parents dying, with having all these children, with all our dramas - god there's been some dramas -with faith and humour. She has had an acute life-threatening illness and dangerous operation that would have killed less hardy people and sailed through it. She laid in her hospital bed, still very physically unwell, bitching merrily about everything, expecting my dad to be psychic, totally her normal self (aside from immediately after morphine when she started asking about Uboats and hearing tingling). She has taken this awful news on the chin, with black jokes and sorrow and love. She says she's not strong. She says she's not brave. She says she's a coward or she would have gone and got it sorted out before. She is wrong. My mum is being strong and brave and an example to us all.
Mum has requested that, if you feel inclined to do something and can afford to, that you please donate to Macmillan Cancer Support through this link. They are truly being wonderful at the moment.
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