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

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

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.........

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

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...........

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.

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........