Friday, 29 November 2013
Coke Floats & Chemo: The Special Parent's Handbook
Coke Floats & Chemo: The Special Parent's Handbook: Thanks to all the encouragement and support I've been getting recently, I've finally started writing my book, or should I say, my fi...
The Special Parent's Handbook
Thanks to all the encouragement and support I've been getting recently, I've finally started writing my book, or should I say, my first book, because I really hope there's going to be time to write a load of them. Already I've pencilled together the bones of 12 different book titles, but then if no one likes my first one, who knows whether I'll be brave enough to impose the others onto an unsuspecting world.
There are so many things I could write about, but the first one is going to be a little bit special for me, something I promised myself I'd write a very long time ago, when my son, Toby, was first born. I'm writing that book that I wish had already been written so that someone could have given it to me in those scary, lonely, bleak days when he was only ever one last breath away from being taken from us.
Of course, in those early days, I had no idea that both Francesca and Adam would also be diagnosed with a whole host of disabilities, and how different our family life would inevitably become as a result of all three of them being not quite mainstream.
Toby is so profoundly disabled that he is in a different league to my other two, and in a lot of ways I think that has done them some favours. If either of them had been helicoptered into another family where they were the only special need's child, I don't think they would have developed the resilience and resources that they have; Toby gave our whole family a very different perspective on degrees of disability.
So far, I have three firm buyers for the book, but hopefully there may be a few more once it's finished. What I'd really like is that there may be some tips, tricks or strategies that I can pass on to parents still struggling at the early stages of realisation that all may not be quite right with their child. If even one family can learn from some of my mistakes, and find a way to short cut some of the wrong paths we took as a family, then I will be really happy. I think I somehow got quite a bit of it right along the way, too, though.
Francesca and I had a bit of a laugh this evening, reminiscing over silly things that happened before she was old enough to go to school that are going into the book, but going over some of the memories has been quite difficult and has stirred up some of the long-buried sadnesses and ancient hurt, so it hasn't been a totally easy ride so far.
Bringing up three disabled children is a bit unusual, and it's given me insight into a lot of things I never would otherwise have known. Once upon a time, in those innocent days when disability was something that only ever happened to other people's families, I didn't know a single person who had a disabled child. Now I hardly know anyone who doesn't. My "disabled mummies" are hilarious, we share a gallows humour that can make you laugh til your sides are hurting far too much. I couldn't get through without them. They also are always there, and understand in a way that others can struggle with, when things go horribly wrong. Sometimes things don't even go that horribly wrong, but you reach a new moment of a brick wall, and can't stop feeling low for days on end, and they're there with the Kleenex and cuppa just when you need it the most.
Three of these lovely ladies are my "sounding board". As I write each chapter it gets emailed to Sian, Linda and Benedicte, who all look at it and tell me what should stay in, what should come out, what else needs to be said and how to make it better. One of the tips I've so far had back is "For goodness sake let them know that just because they have a disabled child they aren't ever going to be immune to other shit happening".
Good point, it really does often seem that the bad-luck goblins are queuing around the block, laughing their heads off as they wait in turn to each lay a little bit more trouble at the door. We might not be immune to trouble, but we do get fairly used to it and even calamities to happen. Having the kids I have has certainly been good training for dealing with breast cancer; I think I've somehow had to learn to deal with the unexpected, and take life as it comes.
My secret hope is that the books lead to being asked to do more public speaking, in front of audiences where my experiences might actually help to change things for the better for parents like us. It would also be nice to do well enough to pass on a little bit of a nest egg to each of the children; heaven only knows they will have far more to deal with because of their disabilities, and there's a very good chance that I might not be around to help steer them way into adulthood either because this wretched breast cancer has decided to lay down roots in my spine. A little bit of financial security would be lovely, and that's what's really keeping me going.
I've just finished Chapter 7, with another 5 to go. Then there will be an introduction, a conclusion, and a huge rewriting of sections of the book before I publish. Something really annoying keeps happening. As soon as I've pressed "send" on the email to my three ladies, my head gets stuffed full of what I've left out and better ways to say what I've said already, and I convince myself that my efforts so far are rubbish. Even when they tell me they're not, I just think they're probably being nice. Last night I got two words back from one of them about Chapter 6, she simply wrote "It's lovely". That sent me to bed with a nice warm feeling, but I woke up again this morning with every insecurity that goes with this whole writing malarkey. All I can do is my best, which isn't always easy in my household. I went on a bit of a paddy this afternoon and told anyone who'd listen that they had to shut up and leave me alone..... some days I'm lucky if I get two and a half words written before the next interruption.
Toby's in respite for a couple of days so I should be able to get my head down and concentrate, and they have promised to cook their own meals and do their own washing for the next 36 hours while I steam ahead. I'd like to get as far as Chapter 10 by Saturday morning, but I then have to squeeze in cancer treatment before collecting Toby at 2pm. The chemo room opens on Saturdays around Christmas time and they reschedule everything so no one has to go too long between treatments due to the Christmas and New Year bank holidays.
Hey, did I really just type those two scary words, "Christmas Time"? When am I going to get time to squeeze in Christmas too?! My to-list, not even counting the book, is horribly long and scary too, so I need about 20 extra days added to every week at the moment. Crazy. Does any of it matter? Unfortunately yes. Better go and get some shuteye or the Chapter 8 tomorrow morning will be nonsense and I'll sound as drunk as a skunk on the four phonecalls I have to make from the list. It's nearly 3am already, and come what may, I have to be up at 7.30am. Night night.
There are so many things I could write about, but the first one is going to be a little bit special for me, something I promised myself I'd write a very long time ago, when my son, Toby, was first born. I'm writing that book that I wish had already been written so that someone could have given it to me in those scary, lonely, bleak days when he was only ever one last breath away from being taken from us.
Of course, in those early days, I had no idea that both Francesca and Adam would also be diagnosed with a whole host of disabilities, and how different our family life would inevitably become as a result of all three of them being not quite mainstream.
Toby is so profoundly disabled that he is in a different league to my other two, and in a lot of ways I think that has done them some favours. If either of them had been helicoptered into another family where they were the only special need's child, I don't think they would have developed the resilience and resources that they have; Toby gave our whole family a very different perspective on degrees of disability.
So far, I have three firm buyers for the book, but hopefully there may be a few more once it's finished. What I'd really like is that there may be some tips, tricks or strategies that I can pass on to parents still struggling at the early stages of realisation that all may not be quite right with their child. If even one family can learn from some of my mistakes, and find a way to short cut some of the wrong paths we took as a family, then I will be really happy. I think I somehow got quite a bit of it right along the way, too, though.
Francesca and I had a bit of a laugh this evening, reminiscing over silly things that happened before she was old enough to go to school that are going into the book, but going over some of the memories has been quite difficult and has stirred up some of the long-buried sadnesses and ancient hurt, so it hasn't been a totally easy ride so far.
Bringing up three disabled children is a bit unusual, and it's given me insight into a lot of things I never would otherwise have known. Once upon a time, in those innocent days when disability was something that only ever happened to other people's families, I didn't know a single person who had a disabled child. Now I hardly know anyone who doesn't. My "disabled mummies" are hilarious, we share a gallows humour that can make you laugh til your sides are hurting far too much. I couldn't get through without them. They also are always there, and understand in a way that others can struggle with, when things go horribly wrong. Sometimes things don't even go that horribly wrong, but you reach a new moment of a brick wall, and can't stop feeling low for days on end, and they're there with the Kleenex and cuppa just when you need it the most.
Three of these lovely ladies are my "sounding board". As I write each chapter it gets emailed to Sian, Linda and Benedicte, who all look at it and tell me what should stay in, what should come out, what else needs to be said and how to make it better. One of the tips I've so far had back is "For goodness sake let them know that just because they have a disabled child they aren't ever going to be immune to other shit happening".
Good point, it really does often seem that the bad-luck goblins are queuing around the block, laughing their heads off as they wait in turn to each lay a little bit more trouble at the door. We might not be immune to trouble, but we do get fairly used to it and even calamities to happen. Having the kids I have has certainly been good training for dealing with breast cancer; I think I've somehow had to learn to deal with the unexpected, and take life as it comes.
My secret hope is that the books lead to being asked to do more public speaking, in front of audiences where my experiences might actually help to change things for the better for parents like us. It would also be nice to do well enough to pass on a little bit of a nest egg to each of the children; heaven only knows they will have far more to deal with because of their disabilities, and there's a very good chance that I might not be around to help steer them way into adulthood either because this wretched breast cancer has decided to lay down roots in my spine. A little bit of financial security would be lovely, and that's what's really keeping me going.
I've just finished Chapter 7, with another 5 to go. Then there will be an introduction, a conclusion, and a huge rewriting of sections of the book before I publish. Something really annoying keeps happening. As soon as I've pressed "send" on the email to my three ladies, my head gets stuffed full of what I've left out and better ways to say what I've said already, and I convince myself that my efforts so far are rubbish. Even when they tell me they're not, I just think they're probably being nice. Last night I got two words back from one of them about Chapter 6, she simply wrote "It's lovely". That sent me to bed with a nice warm feeling, but I woke up again this morning with every insecurity that goes with this whole writing malarkey. All I can do is my best, which isn't always easy in my household. I went on a bit of a paddy this afternoon and told anyone who'd listen that they had to shut up and leave me alone..... some days I'm lucky if I get two and a half words written before the next interruption.
Toby's in respite for a couple of days so I should be able to get my head down and concentrate, and they have promised to cook their own meals and do their own washing for the next 36 hours while I steam ahead. I'd like to get as far as Chapter 10 by Saturday morning, but I then have to squeeze in cancer treatment before collecting Toby at 2pm. The chemo room opens on Saturdays around Christmas time and they reschedule everything so no one has to go too long between treatments due to the Christmas and New Year bank holidays.
Hey, did I really just type those two scary words, "Christmas Time"? When am I going to get time to squeeze in Christmas too?! My to-list, not even counting the book, is horribly long and scary too, so I need about 20 extra days added to every week at the moment. Crazy. Does any of it matter? Unfortunately yes. Better go and get some shuteye or the Chapter 8 tomorrow morning will be nonsense and I'll sound as drunk as a skunk on the four phonecalls I have to make from the list. It's nearly 3am already, and come what may, I have to be up at 7.30am. Night night.
Monday, 11 November 2013
Coke Floats & Chemo: She's that lady with cancer, you know
Coke Floats & Chemo: She's that lady with cancer, you know: Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my ...
She's that lady with cancer, you know
Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my analysis of some of the problems facing our NHS too. It's been a good week, if a little bit too full-on to catch my breath very often.
Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist.
He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend.
The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news.
Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again.
I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me.
I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out.
The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about.
Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages.
A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference.
I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be?
The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield.
There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone.
Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say!
As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos.
And yes, that really is a camel!
Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist.
He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend.
The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news.
Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again.
I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me.
I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out.
The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about.
Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages.
A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference.
I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be?
The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield.
There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone.
Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say!
As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos.
And yes, that really is a camel!
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