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..............
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