It's a mother thing.....

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........

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.