Today I am 45, not old you may think, but with a leukaemia diagnosis each birthday is a double edged sword - a celebration of another year lived, the fear that this may be the last.
For me it's also about spending time with my three daughters, living, loving, laughing, being reminded of how utterly lucky I am to have them in my life. I would go through every difficult minute of my life again because with it has come the amazing moments with my daughters - and, perhaps thanks to leukaemia, the ability to appreciate every one of those moments.
But as double edged swords are the theme, every moment of joy I have with the girls reminds me of one of the biggest losses of my life, my own mother. She died of cancer aged 50, living long enough to meet one of her granddaughters and dying just two months before the second one was born.
I'm unfortunately far from alone in having lost someone so close to me. I know many of you can relate to the fact that even now, 19 years on, I can still feel a very real gut-renching pain at her loss. There are still moments, where that loss can overtake me and bring me to tears, it's the kind that you never get over.....
The fact that none of my daughters have any memories of what it is like to have a grandmother is one of the few things I regret in this life. This life we live can sometimes be too cruel.
Those of you who remember me as a teenager, will perhaps know that my relationship with my mother was not always the easiest of things. We fought bitterly at times, there are times when I have fought with my own daughters, when they have fought with each other. But I think that this is just a normal part of life and growing up for all of us, the trick is to recognise this and let those arguements go.....
There's no point beating yourself up about things that have been said, actions that perhaps would have been better not taken. This is the nature of close relationships, especially one between women. But, I know that when she needed me most I was there for my mother, and she for me.
I've not been a perfect mother in my time, with hindsight perhaps I would have done some things differently, I've been criticised for being more of a friend and less of a mother. I've tried to live my life at the same time as being a single parent. But I think that sometimes we worry too much about the minutiae, the detail. What matters in the end is the whole - what I have in the end is a close, loving relationship with each and every one of my daughters.
What I hope for their futures is that they appreciate how lucky they are to be part of a close knit network of women, it won't always be an easy relationship, but I trust that love will ensure that when they need each other most they will be there for each other.
If I can have given them anything in this life it's sisters who can be there for them through life's joys and sisters who can be relied upon when needed. Shared memories of a life lived that can bind them together. For we all need someone to turn to at times........
Sunday 18 December 2011
Reminders of mortality!
It's been a whole month since I last blogged - very remiss. But to be fair, there has been so much going on, some things that I just can't blog about, one of those times when life just takes over.....
Many of you will know that after 11 years on the drug trial it has come to a close and I am now having to secure the funding to get Glivec on an ongoing basis. The news was a bit of a shock, I knew the trial would end at some time, I just hoped the transition would be gentler. I was beginning to regret the title of this blog I can tell you...........
I am sure that it will get sorted and all will be well, but having my consultant only give me a months worth of the drug that is keeping me alive and a fully functioning member of society and the news that I would have to go through the system to get more was, to say the least, disconcerting.
I'm a fairly hardy CMLer - used to the rollercoaster life it has brought me, but I still wish that sometimes, just sometimes, people were a little bit gentler in the way that they handle things. After 11 years you crave normal - you want to avoid the reminders that there's this thing inside you that can come back and cut short your time on this planet.
The funding news brought my own mortality starkly, harshly, far too bluntly, back to the fore.
I didn't really need to be reminded that my life hangs on the next blood test, the four pills I take every night, the fingers that are crossed.
I complain about very little in my treatment - I think my care has been exemplary over the years but I think it's time that the world took another look at those of us living with cancer and other long-term conditions, it's no longer necessarily an immediate death sentence.
With fantastic improvements in treatments that is exactly what we are now, living with long-term conditions. This is a good thing, but we need to find ways to live with this, and we need those dealing with us to change their mindset too, I may be slowly dying, but in the meantime I am living in exactly the same way as every one of you.
Many of you will know that after 11 years on the drug trial it has come to a close and I am now having to secure the funding to get Glivec on an ongoing basis. The news was a bit of a shock, I knew the trial would end at some time, I just hoped the transition would be gentler. I was beginning to regret the title of this blog I can tell you...........
I am sure that it will get sorted and all will be well, but having my consultant only give me a months worth of the drug that is keeping me alive and a fully functioning member of society and the news that I would have to go through the system to get more was, to say the least, disconcerting.
I'm a fairly hardy CMLer - used to the rollercoaster life it has brought me, but I still wish that sometimes, just sometimes, people were a little bit gentler in the way that they handle things. After 11 years you crave normal - you want to avoid the reminders that there's this thing inside you that can come back and cut short your time on this planet.
The funding news brought my own mortality starkly, harshly, far too bluntly, back to the fore.
I didn't really need to be reminded that my life hangs on the next blood test, the four pills I take every night, the fingers that are crossed.
I complain about very little in my treatment - I think my care has been exemplary over the years but I think it's time that the world took another look at those of us living with cancer and other long-term conditions, it's no longer necessarily an immediate death sentence.
With fantastic improvements in treatments that is exactly what we are now, living with long-term conditions. This is a good thing, but we need to find ways to live with this, and we need those dealing with us to change their mindset too, I may be slowly dying, but in the meantime I am living in exactly the same way as every one of you.
Saturday 19 November 2011
And what of men?............................
Well, that was obvious I hear some of you say......and I can hear others bracing themselves in their very masculine chairs....what the hell is she gonna say now?! Well, you gotta let a girl have a bit of fun ;-)
As you may know, there have been a few in my life, some good, some not so good, some that I will never want to forget..... I regret not one of them, they are helping to shape me.
But with leukaemia in your life it's difficult to form meaningful, lasting relationships - you always feel that you are giving the other person a bum deal, and that, if they're of the good variety and you care about them, then they perhaps deserve more than you can offer. It's hard to let people you care about get close to you when you may die on them, who would want to put anyone through that?
So, I've had relationships.....a few. None that have gone the full nine yards! I've become a master at pressing the self-destruct button, so skilled that they often don't realise it's me pushing it. And so here I am again, single - good job I like that status!!
It's really hard when you start a new relationship, you meet a guy, you date, and all the time you're thinking, when do I mention the 'L' word - no, not love, that bit's easy. But when do you tell them you've got leukaemia?
The minute you meet them? Get it out in the open straight away - oh hi, I'm Lorraine, I have leukaemia and am a fan of alliteration......... yup, that would send me running for the hills - mental bird!!
Is it before you sleep with them? You can see the conundrum, here's me, doing my best at 44 to convince myself that I'm still a sexy woman, trying to flirt, seduce, entice (who me?!!) and then as things start to head in the right direction, ie half way up the stairs: you say - oh, by the way, I have leukaemia, it's not curable, I take meds every day, and I'm probably gonna die....... all that hard work on seduction goes out the window, passion killer.
Or, do you wait til afterwards? And they feel slightly cheated, that the person they just had a passionate encounter with, is actually someone else.
For a woman like me, ie full blooded, having such a passion killer in my repertoire is a complete antithesis.
And here's the thing, people, and more especially, men, they look at you differently when they know you have leukaemia, it's the male protective instinct.........suddenly, they want to care for you! Great, you think, who doesn't want to be cared for?! Well, actually, me....... I don't want/need a carer, I love to be cherished like any sane woman, but I also want to be loved, passionately, despite the leukaemia.
So, it becomes this thing that basically no man (or at least not one I've met yet) can get right for me, they're on a losing track. Some, and usually the good ones, can't bear to talk about it with you, they can't bear to hear me take the piss out of my leukeamia - the 'what's the point of a pension cos I'm dying' line doesn't go down well!! I know that's because they care, but being in denial is not the way forward, it's a massive part of me, if you can't face up to that, then you can't face up to me.
Then there's the ones who face up to it so much they want to be my carer, look after me, love me, support me, cherish me, protect me, smother me, possess me, choke me!! This bird has been on her own far too long to cope with that, I'm far too stubborn and independent to give myself up to another human being in that way........so another relationship bites the dust.
I have ended relationships because of the leukaemia, because of the way it is affecting the other person - it's not an easy thing to cope with, but I cope, sometimes it is far harder for the others in your life. I do recognise now that that was not necessarily my decision to make.....
Some men have been completely up front with me, I don't want a relationship with you because of the leukaemia, I can't cope with it. You gotta admire them for their honesty - problem is, being a woman, that suddenly makes me want them even more!!
One man, in blunt honesty, did say that he couldn't have a relationship with me because I am dying, and he couldn't put himself, or his family, through that - that's the bluntest honesty I've ever had. It crushed me, not just because of who he is in my life, and it is him that gave me the title for this blog..............
But, in all of this, my relationships with men, have been about my craving to be normal, to live a normal life.......I'm beginning to realise that perhaps, even without the leukaemia that is not my way.
So, at this time in my life, instead of looking for love, instead of looking for a relationship to complete me, instead of worrying about dying without a man who loves me in my life.
I'm just enjoying time out, learning to be me, learning to complete myself..................
As you may know, there have been a few in my life, some good, some not so good, some that I will never want to forget..... I regret not one of them, they are helping to shape me.
But with leukaemia in your life it's difficult to form meaningful, lasting relationships - you always feel that you are giving the other person a bum deal, and that, if they're of the good variety and you care about them, then they perhaps deserve more than you can offer. It's hard to let people you care about get close to you when you may die on them, who would want to put anyone through that?
So, I've had relationships.....a few. None that have gone the full nine yards! I've become a master at pressing the self-destruct button, so skilled that they often don't realise it's me pushing it. And so here I am again, single - good job I like that status!!
It's really hard when you start a new relationship, you meet a guy, you date, and all the time you're thinking, when do I mention the 'L' word - no, not love, that bit's easy. But when do you tell them you've got leukaemia?
The minute you meet them? Get it out in the open straight away - oh hi, I'm Lorraine, I have leukaemia and am a fan of alliteration......... yup, that would send me running for the hills - mental bird!!
Is it before you sleep with them? You can see the conundrum, here's me, doing my best at 44 to convince myself that I'm still a sexy woman, trying to flirt, seduce, entice (who me?!!) and then as things start to head in the right direction, ie half way up the stairs: you say - oh, by the way, I have leukaemia, it's not curable, I take meds every day, and I'm probably gonna die....... all that hard work on seduction goes out the window, passion killer.
Or, do you wait til afterwards? And they feel slightly cheated, that the person they just had a passionate encounter with, is actually someone else.
For a woman like me, ie full blooded, having such a passion killer in my repertoire is a complete antithesis.
And here's the thing, people, and more especially, men, they look at you differently when they know you have leukaemia, it's the male protective instinct.........suddenly, they want to care for you! Great, you think, who doesn't want to be cared for?! Well, actually, me....... I don't want/need a carer, I love to be cherished like any sane woman, but I also want to be loved, passionately, despite the leukaemia.
So, it becomes this thing that basically no man (or at least not one I've met yet) can get right for me, they're on a losing track. Some, and usually the good ones, can't bear to talk about it with you, they can't bear to hear me take the piss out of my leukeamia - the 'what's the point of a pension cos I'm dying' line doesn't go down well!! I know that's because they care, but being in denial is not the way forward, it's a massive part of me, if you can't face up to that, then you can't face up to me.
Then there's the ones who face up to it so much they want to be my carer, look after me, love me, support me, cherish me, protect me, smother me, possess me, choke me!! This bird has been on her own far too long to cope with that, I'm far too stubborn and independent to give myself up to another human being in that way........so another relationship bites the dust.
I have ended relationships because of the leukaemia, because of the way it is affecting the other person - it's not an easy thing to cope with, but I cope, sometimes it is far harder for the others in your life. I do recognise now that that was not necessarily my decision to make.....
Some men have been completely up front with me, I don't want a relationship with you because of the leukaemia, I can't cope with it. You gotta admire them for their honesty - problem is, being a woman, that suddenly makes me want them even more!!
One man, in blunt honesty, did say that he couldn't have a relationship with me because I am dying, and he couldn't put himself, or his family, through that - that's the bluntest honesty I've ever had. It crushed me, not just because of who he is in my life, and it is him that gave me the title for this blog..............
But, in all of this, my relationships with men, have been about my craving to be normal, to live a normal life.......I'm beginning to realise that perhaps, even without the leukaemia that is not my way.
So, at this time in my life, instead of looking for love, instead of looking for a relationship to complete me, instead of worrying about dying without a man who loves me in my life.
I'm just enjoying time out, learning to be me, learning to complete myself..................
Monday 7 November 2011
Love Meditation
On a wall in Shining Tree is a plaque with the following Love Meditation - as you know I like to share things that resonate with me.......
"Deep in the centre of my being; there is an infinite well of love, I now allow this love to flow to the surface.
It fills my heart, my body, my mind, my consciousness, my very being, and radiates out from me in all directions and returns to me multiplied.
The more love I use and give, the more I have to give, the supply is endless. The use of love makes me feel good, it is an expression of my inner joy.
I LOVE MYSELF
therefore I take loving care of my body
I lovingly feed it nourishing food and beverages.
I lovingly groom and dress it and my body lovingly responds to me with vibrant health and energy.
I LOVE MYSELF
therefore I provide for myself a comfortable home, one that fills all my needs and is a pleasure to be in.
I fill the rooms with the vibrations of love so that all who enter, myself included, will feel this love and be nourished by it.
I LOVE MYSELF
therefore I work at a job that I truly enjoy doing, one that uses my creative talents and abilities, working with and for people who I love and who love me, and earning a good income.
I LOVE MYSELF
therefore I behave and think in a loving way to all people for I know that which I give returns to me multiplied. I only attract loving people in my world for they are a mirror of myself.
I LOVE MYSELF
therefore I forgive and totally release the past and all past experiences and I am free....
I LOVE MYSELF
therefore I love totally in the now, experiencing each moment as good and knowing that my future is bright, joyous and secure for I am a beloved child of the universe and the universe lovingly takes care of me now and forever more.
And so it is....
"Deep in the centre of my being; there is an infinite well of love, I now allow this love to flow to the surface.
It fills my heart, my body, my mind, my consciousness, my very being, and radiates out from me in all directions and returns to me multiplied.
The more love I use and give, the more I have to give, the supply is endless. The use of love makes me feel good, it is an expression of my inner joy.
I LOVE MYSELF
therefore I take loving care of my body
I lovingly feed it nourishing food and beverages.
I lovingly groom and dress it and my body lovingly responds to me with vibrant health and energy.
I LOVE MYSELF
therefore I provide for myself a comfortable home, one that fills all my needs and is a pleasure to be in.
I fill the rooms with the vibrations of love so that all who enter, myself included, will feel this love and be nourished by it.
I LOVE MYSELF
therefore I work at a job that I truly enjoy doing, one that uses my creative talents and abilities, working with and for people who I love and who love me, and earning a good income.
I LOVE MYSELF
therefore I behave and think in a loving way to all people for I know that which I give returns to me multiplied. I only attract loving people in my world for they are a mirror of myself.
I LOVE MYSELF
therefore I forgive and totally release the past and all past experiences and I am free....
I LOVE MYSELF
therefore I love totally in the now, experiencing each moment as good and knowing that my future is bright, joyous and secure for I am a beloved child of the universe and the universe lovingly takes care of me now and forever more.
And so it is....
Shining Tree
Retreating - something I'd always wanted to do but never had the time/courage to. This weekend I went to my first retreat - a health and wellbeing one on the edge of the Fens in the very inaptly named Salter's Lode!
For me the whole experience was amazing, humbling, healing, loving and peaceful. If you've never been on a retreat then I would urge you to consider it, a bit of time to yourself is something we all need at times.
If you're looking for a pamper me spa weekend where you come away and the outside of your body is glowing - then Shining Tree is not the place for you. Instead what I got was taken into the loving home of a couple whose sole purpose for the whole weekend was to care, look after me and teach me ways to help myself.
I had several treatments tailored to my own specific needs, I've been fed the most amazing healthy vegetarian food (I'll never look at a McDonald's again!!) and I've been generally loved, cherished and respected.
I went in pain from a lower back injury and trapped sciatic nerve, I am home - without pain. Gentle manipulation untrapped my sciatic nerve (I'm not a lover of the crunching that comes from chiropracters), yoga exercises have helped to strengthen the lower back helping to reduce the pain there.
When I went the whites of my eyes had turned a slight yellowish colour - something the doctors weren't concerned about, my liver function tests are fine, but it bothered me. I woke on Sunday morning to find brilliant white eyes shining back at me - the whites of my eyes are finally just that again.
This is not a quick fix solution, I know that years of weakness in my back will see the pain return if I don't actively do something to look after it - so I have been furnished with a yoga and meditation routine that will help with that.
I now know the importance of breath - obvious you would think!! But I've actually experienced the healing power of breathing properly and want to continue to reap the benefits of that. I may get some funny looks when making wave sounds with my breath - but I care not, I'm loving the healing benefits.
James and Kim have provided me with an important step in the next phase of my journey in this life and did so with humanity and humility - they are an amazing couple who have taught me so much in one short weekend.
The emphasis now is on me to keep up the good work and continue to treat myself and my body with the love and respect it deserves, the change in me recently is that I actually want to do just that. I want a long and healthy future, I now have some tools to help with that.
I'm likely to be a slightly hippier, veggie version of my former self - more in touch with my inner core, hopefully more rooted, but I know that those of you who count will cope with the new me.
For me the whole experience was amazing, humbling, healing, loving and peaceful. If you've never been on a retreat then I would urge you to consider it, a bit of time to yourself is something we all need at times.
If you're looking for a pamper me spa weekend where you come away and the outside of your body is glowing - then Shining Tree is not the place for you. Instead what I got was taken into the loving home of a couple whose sole purpose for the whole weekend was to care, look after me and teach me ways to help myself.
I had several treatments tailored to my own specific needs, I've been fed the most amazing healthy vegetarian food (I'll never look at a McDonald's again!!) and I've been generally loved, cherished and respected.
I went in pain from a lower back injury and trapped sciatic nerve, I am home - without pain. Gentle manipulation untrapped my sciatic nerve (I'm not a lover of the crunching that comes from chiropracters), yoga exercises have helped to strengthen the lower back helping to reduce the pain there.
When I went the whites of my eyes had turned a slight yellowish colour - something the doctors weren't concerned about, my liver function tests are fine, but it bothered me. I woke on Sunday morning to find brilliant white eyes shining back at me - the whites of my eyes are finally just that again.
This is not a quick fix solution, I know that years of weakness in my back will see the pain return if I don't actively do something to look after it - so I have been furnished with a yoga and meditation routine that will help with that.
I now know the importance of breath - obvious you would think!! But I've actually experienced the healing power of breathing properly and want to continue to reap the benefits of that. I may get some funny looks when making wave sounds with my breath - but I care not, I'm loving the healing benefits.
James and Kim have provided me with an important step in the next phase of my journey in this life and did so with humanity and humility - they are an amazing couple who have taught me so much in one short weekend.
The emphasis now is on me to keep up the good work and continue to treat myself and my body with the love and respect it deserves, the change in me recently is that I actually want to do just that. I want a long and healthy future, I now have some tools to help with that.
I'm likely to be a slightly hippier, veggie version of my former self - more in touch with my inner core, hopefully more rooted, but I know that those of you who count will cope with the new me.
Friday 4 November 2011
With Love
There's a very simply but beautiful quote that goes alongside my last post. It comes from Richard Beckinsale, of former Porridge fame. He died very young but as well as his acting he left us with a beautiful book of poetry and quotes 'With Love' and this is one of my favourite:
"I wish I had arrived at where I am going and had made my discovery. Then perhaps I might be capable of carrying the burden of someone else's happiness and complement their existence by making it happy and complete." Richard Beckinsale.
"I wish I had arrived at where I am going and had made my discovery. Then perhaps I might be capable of carrying the burden of someone else's happiness and complement their existence by making it happy and complete." Richard Beckinsale.
Let's talk about living......
Ok - so let's talk about living. Flipping heck, I hear you say, will this woman make her mind up?! One minute it's dying, now it's living! Well, maybe one day.....who knows? It's not compulsory.....
That's the thing about this dying lark - it gets you to thinking about living and what it's all about. For the past 11 years I feel like I've had my head down, concentrating on only one thing, living long enough to raise the girls, avoiding the death thing.
But It's hard to avoid the thoughts of dying when the sword of damacles hangs above your head and every now and then it gives you a gentle tap as if to say - hey remember me, I'm still here, not going anywhere.
But like I've said before, I'm here now, and whilst the sword is still up there it doesn't appear to be swinging my way anytime soon. Great news, scary news, really difficult to get your head around news. There's this slight possibility that despite still having leukaemia traceable in my body I could live as long as every one of you - I could grow old (er), grey (er) and dare I say it, slightly mad (der)..........
So here's the thing, what to do with that?
When I was first diagnosed I'd just gone through a difficult divorce, just got my first single house with the girls, just felt like I was getting onto my own feet for probably the first time in my life.....
then the leukaemia happened.
Then, the one thing I thought I'd always be able to rely on, my own self, my own body - turned on me, talk about body dysmorphia. Whilst you can forgive other people for the things they do to you it's so very hard to forgive yourself.
But it's time.........so this weekend, I'm taking myself away, I'm retreating. Not because life's too much - life's difficult, amazing, wonderful and I can never get enough of it.
But because I need some time to learn to forgive this body of mine, to forget the past and to let go of the pain it has had me in for many years now.
With a bit of meditation, yoga, relaxation, massage and general loving of this body perhaps I can let the past go and learn to live again.
So my dear friends, I retreat..............
That's the thing about this dying lark - it gets you to thinking about living and what it's all about. For the past 11 years I feel like I've had my head down, concentrating on only one thing, living long enough to raise the girls, avoiding the death thing.
But It's hard to avoid the thoughts of dying when the sword of damacles hangs above your head and every now and then it gives you a gentle tap as if to say - hey remember me, I'm still here, not going anywhere.
But like I've said before, I'm here now, and whilst the sword is still up there it doesn't appear to be swinging my way anytime soon. Great news, scary news, really difficult to get your head around news. There's this slight possibility that despite still having leukaemia traceable in my body I could live as long as every one of you - I could grow old (er), grey (er) and dare I say it, slightly mad (der)..........
So here's the thing, what to do with that?
When I was first diagnosed I'd just gone through a difficult divorce, just got my first single house with the girls, just felt like I was getting onto my own feet for probably the first time in my life.....
then the leukaemia happened.
Then, the one thing I thought I'd always be able to rely on, my own self, my own body - turned on me, talk about body dysmorphia. Whilst you can forgive other people for the things they do to you it's so very hard to forgive yourself.
But it's time.........so this weekend, I'm taking myself away, I'm retreating. Not because life's too much - life's difficult, amazing, wonderful and I can never get enough of it.
But because I need some time to learn to forgive this body of mine, to forget the past and to let go of the pain it has had me in for many years now.
With a bit of meditation, yoga, relaxation, massage and general loving of this body perhaps I can let the past go and learn to live again.
So my dear friends, I retreat..............
Sunday 30 October 2011
For Fiona with love x
Hearing today of the loss of another CMLer reminds me of one of my first CML friends - Fiona. I never had the chance to meet her but with this thankfully rare disease we make friends over the internet and through an online support group.
I met Fiona this way and we talked online for many hours, we shared an illness, we were of a similar age but I had already had my children. Fiona was newly married and her wish with the CML was to have the chance to start a family of her own.
It was the very early days of Glivec and as one of the first in the country I started taking the pills, and had a good initial response to this new wonder drug. I shared my experiences with Fiona, who was hoping and praying for the opportunity to be given Glivec as well.
Eventually, she was given the chance. She was so excited to be starting the drug and so hopeful for the future......
Only days later I found out that Fiona had died, the very drug that was controlling my leukaemia had given her a massive toxic shock. I never had the opportunity to meet her, I never had the opportunity to say goodbye to her, I did have the opportunity to speak via email to the husband who had lost his young wife but what can you possibly say that means anything in those circumstances?
For me, Fiona will never be forgotten, for me, every moment I share with my daughters, every opportunity I have to laugh and be happy is done in her memory.
One of the positives of this disease - and yes, there are some - is the CML community that I have the good fortune to be part of, a shared illness, shared experiences, shared moans, all of these things have brought me new friends.
Every loss of someone from that community brings us sadness - but on the flip side a renewed determination to get the most out of every moment we have.
This post, Fiona, is for you with love x
I met Fiona this way and we talked online for many hours, we shared an illness, we were of a similar age but I had already had my children. Fiona was newly married and her wish with the CML was to have the chance to start a family of her own.
It was the very early days of Glivec and as one of the first in the country I started taking the pills, and had a good initial response to this new wonder drug. I shared my experiences with Fiona, who was hoping and praying for the opportunity to be given Glivec as well.
Eventually, she was given the chance. She was so excited to be starting the drug and so hopeful for the future......
Only days later I found out that Fiona had died, the very drug that was controlling my leukaemia had given her a massive toxic shock. I never had the opportunity to meet her, I never had the opportunity to say goodbye to her, I did have the opportunity to speak via email to the husband who had lost his young wife but what can you possibly say that means anything in those circumstances?
For me, Fiona will never be forgotten, for me, every moment I share with my daughters, every opportunity I have to laugh and be happy is done in her memory.
One of the positives of this disease - and yes, there are some - is the CML community that I have the good fortune to be part of, a shared illness, shared experiences, shared moans, all of these things have brought me new friends.
Every loss of someone from that community brings us sadness - but on the flip side a renewed determination to get the most out of every moment we have.
This post, Fiona, is for you with love x
Saturday 29 October 2011
Being reckless with my life.......
The title - this one, I can't take credit for, I borrowed this one from a lovely lady who has also stared death in the face and survived - just! When she wrote this it resonated with me, so I'm hoping she won't mind that I'm now plagarising her words......
So what does it mean being reckless with my life? Why? How? Isn't that a stupid thing to do?
Well yes - it can be.....
Looking death in the face screws you up, very few of us have done it and still remain completely sane. And so many of us have done it in many different ways, I'm not alone with my brush with death.
It leaves a mark on us all, on a positive side I can appreciate the small things so much more, the people, the moments, the memories - I truly believe that the only thing we really have in this world are the memories, and our legacy is the memories we leave others with.
This has meant that when it comes to the girls, although I've not always been there for them there have been times when all I have wanted to do is create important memories for them. I spent the millenium with them, the solar eclipse on Hornsea seafront, amazing holidays in Egypt and Fuerteventura, Christmases, mad shopping trips to Toys R Us. All of these things were things I had to do with them, irrespective of everything else........even the cost!
But the leukaemia has also meant that I want to push the boundaries of my life, that being normal is not enough, that I want to push and see how far I can go without falling over the edge. I've been reckless with my feelings, I've been reckless with my relationships, I've been reckless with my everything.......
I'm hoping I haven't been too reckless with other people and their emotions, I suspect that has not always been so - sorry!
But the recklessness has also meant that you can sort the wheat from the chaf, the people who cope with it and are still here - are the best people in the world. The sensations, experiences, feelings I have had as a result are ones that I would not have missed.
So, as much pain as it sometimes brings me, I will continue to be reckless with my life.................I just hope that I'm not reckless with yours x
So what does it mean being reckless with my life? Why? How? Isn't that a stupid thing to do?
Well yes - it can be.....
Looking death in the face screws you up, very few of us have done it and still remain completely sane. And so many of us have done it in many different ways, I'm not alone with my brush with death.
It leaves a mark on us all, on a positive side I can appreciate the small things so much more, the people, the moments, the memories - I truly believe that the only thing we really have in this world are the memories, and our legacy is the memories we leave others with.
This has meant that when it comes to the girls, although I've not always been there for them there have been times when all I have wanted to do is create important memories for them. I spent the millenium with them, the solar eclipse on Hornsea seafront, amazing holidays in Egypt and Fuerteventura, Christmases, mad shopping trips to Toys R Us. All of these things were things I had to do with them, irrespective of everything else........even the cost!
But the leukaemia has also meant that I want to push the boundaries of my life, that being normal is not enough, that I want to push and see how far I can go without falling over the edge. I've been reckless with my feelings, I've been reckless with my relationships, I've been reckless with my everything.......
I'm hoping I haven't been too reckless with other people and their emotions, I suspect that has not always been so - sorry!
But the recklessness has also meant that you can sort the wheat from the chaf, the people who cope with it and are still here - are the best people in the world. The sensations, experiences, feelings I have had as a result are ones that I would not have missed.
So, as much pain as it sometimes brings me, I will continue to be reckless with my life.................I just hope that I'm not reckless with yours x
Friday 21 October 2011
I painted my toenails for you.......
I painted my toenails for you........
I bought an array of beautiful colours, deep reds, golds, I even contemplated blue;
I painted my toenails for you........
You licked them, you bit them, you sucked them, you kissed them,
I painted my toenails for you.......
How did I know they reminded you of her......
How did I know it was her toes you were secretly kissing?
How did I know that it was her you were missing?
I painted my toenails for you.......
You're reading this now and thinking this is about you,
What you don't know is that I've painted these toenails before........
What you don't know is that I painted them this morning
Not for you, not for him, but for me!
I painted my toenails for you.........
I bought an array of beautiful colours, deep reds, golds, I even contemplated blue;
I painted my toenails for you........
You licked them, you bit them, you sucked them, you kissed them,
I painted my toenails for you.......
How did I know they reminded you of her......
How did I know it was her toes you were secretly kissing?
How did I know that it was her you were missing?
I painted my toenails for you.......
You're reading this now and thinking this is about you,
What you don't know is that I've painted these toenails before........
What you don't know is that I painted them this morning
Not for you, not for him, but for me!
I painted my toenails for you.........
An Emotional Network.......
Ah! I hear you shriek, she's blogging again.....what now?!
I got to thinking this week following the reaction to my first blogs, about this facebook/twitter world we live in. Is it real? Is it sane? Is it a sign of the breakdown of society?
I log-in every day and see all your status updates and sometimes you lay bare the feelings you have inside. In one simple little status update I know if you are hurting, happy, angry, in love, or simply looking forward to the weekend.
Is this normal? Is it natural? Does it give us a false sense of closeness? Of society? You read in the papers about how society is being broken down because we spend far too much time on computers and not enough actually meeting and interracting with people.
And I agree - there is no substitute for human interraction, for spending a few hours laughing, smiling loving the people in your life. When in pain the hug of a friend or loved one is the most precious thing in the world.
But I don't think what we do on here is wrong, I think it enhances our lives, it gives us another avenue and outlet for our emotions or it just plain keeps us in touch with people who have touched our lives. How can that be wrong?
Through facebook I have reconnected with old friends and lovers, I have a community of fellow CMLers, I have bonded with Rollo's from all over the world, and I can see what mad, bad but full lives my daughters are following.
And through facebook, and now blogging, I can express myself in a way I was never likely to do in the flesh. Think on this, society before the www was much simpler but for those of us who close things off and cannot express ourselves it was a much lonelier place. I have choked many a time, trying to physically say things I find hard to say, I avoid conflict and emotion.
But actually now, through the beauty of the web I am talking and sharing and laughing and caring and touching you all. And all that from the comfort of the battered old sofa in my bedroom.............
I got to thinking this week following the reaction to my first blogs, about this facebook/twitter world we live in. Is it real? Is it sane? Is it a sign of the breakdown of society?
I log-in every day and see all your status updates and sometimes you lay bare the feelings you have inside. In one simple little status update I know if you are hurting, happy, angry, in love, or simply looking forward to the weekend.
Is this normal? Is it natural? Does it give us a false sense of closeness? Of society? You read in the papers about how society is being broken down because we spend far too much time on computers and not enough actually meeting and interracting with people.
And I agree - there is no substitute for human interraction, for spending a few hours laughing, smiling loving the people in your life. When in pain the hug of a friend or loved one is the most precious thing in the world.
But I don't think what we do on here is wrong, I think it enhances our lives, it gives us another avenue and outlet for our emotions or it just plain keeps us in touch with people who have touched our lives. How can that be wrong?
Through facebook I have reconnected with old friends and lovers, I have a community of fellow CMLers, I have bonded with Rollo's from all over the world, and I can see what mad, bad but full lives my daughters are following.
And through facebook, and now blogging, I can express myself in a way I was never likely to do in the flesh. Think on this, society before the www was much simpler but for those of us who close things off and cannot express ourselves it was a much lonelier place. I have choked many a time, trying to physically say things I find hard to say, I avoid conflict and emotion.
But actually now, through the beauty of the web I am talking and sharing and laughing and caring and touching you all. And all that from the comfort of the battered old sofa in my bedroom.............
Sunday 16 October 2011
Is this a breakdown?
Understandably I guess some of you reading this have shown concern for me and concern for how I feel right now. I thank you for that - I understand your concern and I have at times shared it, my life has taken me to the edge at times and I have looked over but chosen not to go there. But is this a break-down you are seeing before you? I don't believe so - for how can you break something that is already broken?
I know that I am a strong person, I know that I cope, I know that life throws many things my way and I keep on going, holding us all together. But whilst I am strong on the outside, inside for a very long time now I have felt broken, not in pieces, not completely, not spiralling out of control but just inherently sad. Is that depression? I don't feel depressed, I often feel great joy. I can sometimes see things more clearly than others, I don't miss the beautiful leaf spiralling down from the tree, I see the flowers hiding behind the hedge, I notice the little things in life that really matter and I can see people in a way that others miss. I appreciate some very good friends that I have been blessed to meet over the years. But at the same time living with Leukaemia has brought me a great sadness inside.
What I am doing now is not breaking but fixing, I keep things inside and now I am sharing. I don't say things that should be said, but now I am. I don't plan - many of you know I don't ever plan, but now, through this I am beginning to plan. I don't touch people but in doing this I am reaching out and touching you.
Is this my therapy - probably, is this self-indulgent? Definitely.
If this is hard to read then please don't.
But in blogging I am letting go of so many things.......
And so I continue to blog...........
I know that I am a strong person, I know that I cope, I know that life throws many things my way and I keep on going, holding us all together. But whilst I am strong on the outside, inside for a very long time now I have felt broken, not in pieces, not completely, not spiralling out of control but just inherently sad. Is that depression? I don't feel depressed, I often feel great joy. I can sometimes see things more clearly than others, I don't miss the beautiful leaf spiralling down from the tree, I see the flowers hiding behind the hedge, I notice the little things in life that really matter and I can see people in a way that others miss. I appreciate some very good friends that I have been blessed to meet over the years. But at the same time living with Leukaemia has brought me a great sadness inside.
What I am doing now is not breaking but fixing, I keep things inside and now I am sharing. I don't say things that should be said, but now I am. I don't plan - many of you know I don't ever plan, but now, through this I am beginning to plan. I don't touch people but in doing this I am reaching out and touching you.
Is this my therapy - probably, is this self-indulgent? Definitely.
If this is hard to read then please don't.
But in blogging I am letting go of so many things.......
And so I continue to blog...........
Stuff
Stuff - why do we have so much stuff in our lives? From the pretty mirrors, modern gadgets, games machines, inane ornaments to the ever-present scatter cushions. Why? what purpose do they have? I once may have seen it but I don't anymore.
Now I have the task of getting rid of all the clutter I have filled my life with over the years, some select bits I will keep, the rest will all have to go.
It's funny how when you buy these things they seem so important - the gorgeous purple bedding I just had to have, the gold framed mirror that looked so good above the fireplace.
Now just the thought of getting rid of them feels cleansing, like a blessed relief to let all this clutter go - for if we look at what is real in this life then that isn't it.
I feel like I have lost track of the real, though I know that in my heart I haven't, I know that the only things that are real in my life are the girls. But I have become overwhelmed by the clutter, the fuss, the people who sweat over the small stuff - I just want to shout out - it REALLY DOESN'T MATTER..........thank God I have the chance to let it all go.
Now I have the task of getting rid of all the clutter I have filled my life with over the years, some select bits I will keep, the rest will all have to go.
It's funny how when you buy these things they seem so important - the gorgeous purple bedding I just had to have, the gold framed mirror that looked so good above the fireplace.
Now just the thought of getting rid of them feels cleansing, like a blessed relief to let all this clutter go - for if we look at what is real in this life then that isn't it.
I feel like I have lost track of the real, though I know that in my heart I haven't, I know that the only things that are real in my life are the girls. But I have become overwhelmed by the clutter, the fuss, the people who sweat over the small stuff - I just want to shout out - it REALLY DOESN'T MATTER..........thank God I have the chance to let it all go.
Saturday 15 October 2011
Day One
OK - I know, the title, bit macabre, bit scary, bit self-indulgent - get over it, I am! The title is exactly how I feel, after being told at 33 that I had 3 to 5 years left to live - 11 years on I am still dying. Slower than expected, controlled by drugs, thanks to the NHS and brilliant man called Dr Brian Druker - but nevertheless dying.
Some of you may have heard me say that I never thought I would live this long, it's true, when I started on this treatment I had three gorgeous little girls and all I ever asked for was to live long enough to see them grow into beautiful, confident, capable, amazing women - and now they have. I never really thought I would make it this far - to have had that opportunity is so totally overwhelming and I am eternally grateful to whatever god/being/faith is out there.
But now what? Now what the hell do I do with myself? With the life I appear to have left. I dare hardly believe in it - I'm so very scared to want it..........
So, here I blog........
Some of you may have heard me say that I never thought I would live this long, it's true, when I started on this treatment I had three gorgeous little girls and all I ever asked for was to live long enough to see them grow into beautiful, confident, capable, amazing women - and now they have. I never really thought I would make it this far - to have had that opportunity is so totally overwhelming and I am eternally grateful to whatever god/being/faith is out there.
But now what? Now what the hell do I do with myself? With the life I appear to have left. I dare hardly believe in it - I'm so very scared to want it..........
So, here I blog........
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