Sunday, 30 September 2012

Silent Sunday

Monday, 24 September 2012

The Worst News

Last night I had a big cry, the sort with hiccups and snot. Talk about things catching you unaware.

The hamster, Bella, is old and dying. Her back legs don't work so well and she is pretty much blind. She is over two and a half years old, which is pretty ancient in dwarf hamster years.

She was brought for the kids, but I am the one who cleans her out and feeds her. I am the one that picks her up and plays with her.

I have been debating whether to clean her out or not, will it disorientate her? (even though her cage stinks).

I sat with her last night as she wibbled and wobbled around her cage, falling over and getting up again, going on her wheel, and falling off her wheel.

After this I headed up to bed, still thinking about little brave Bella, and there it is, I am sobbing, but it's not for Bella.

I remembered the day I told my Mum she was definitely going to die.

My brave, amazing Mum.

We were at Telford hospital, where she had had a stomach bypass operation, as the cancer was in the way and she couldn't eat. She had been there about 2 months and we were finally going to see her consultant.

So there we were; my Dad, who is fairly deaf and had had a heart attack 6 months prior to this which had left him being intermittently confused; my Mum, who was equally deaf and recently partially sighted, a cancer nurse, the consultant and me.

The consultant showed us a picture on the screen (which my Mum couldn't see), which he explained was the cancer. He said it had encompassed her kidneys, 'oh yes, she was in kidney failure, and has been for sometime', he said, as if this was common knowledge. It wasn't, we had no idea.

All I could see was a massive black mass on the screen, he gave it a posh name, stomal something. I loudly repeated the words to my Mum and Dad.

I asked, what was the prognosis. The consultant said, weeks, maybe months.

Mum said 'What did he say?'
I shouted 'Weeks, maybe months, Mum'.
'How long?' said Dad
Again, still shouting 'Weeks Dad, maybe months, it's not treatable'.

I shouted this news.
The worst news.

And I think of my bright intelligent Mum, at hospital and then at home, unable to read, unable to see, deaf, in a muffled box alone with her thoughts.

And I sobbed.

After, Dad and I left Mum in hospital that day. I am driving Dad home, he says,

'Well, that's good news, isn't it'.

I don't know what he thought he had heard, but I had to shout the news to Dad again.

Mum died 4 months ago, and my day to day is normal, the same, but now when I wonder, what would Mum  think or do, like I do about so many things, I realise I will never know.

Thursday, 20 September 2012

Being Thankful

After my tirade about my illness in my last post, I have found out it is CML awareness day this Saturday.

I always said that my illness wouldn't define me and blah blah blah (I am beginning to bore myself).

But I have come to realise it is a part of me and I need to accept it.

So I am trying to do this and it helps me to be thankful that I am still here, in fact to be thankful, generally.

I am thankful, everyday that I live in this day and age, where the advances we have made in science has kept me alive, long enough to see my youngest daughters first stage performance with a paying audience (and I suspect not her last)

I am thankful that I have been to a music festival with all my family, and that the first one my kids went to was with me and hubs.

I am proud that my girls asked to go to self defense classes without any prompting from us.

I am thankful I was there for my eldest's holy communion.

And that my Mum (on the right) and my Mother-in-Law were there to see it.

I am thankful for my friends and family and my hubs who keeps me sane (well as much as he can) and so much more. 

So from now on, no more whingeing, because what good will that do. Instead, please go here and sign the petition and raise awareness, so we get more funding and donations for blood cancers. 

Thursday, 13 September 2012

Now we are six

Today my baby is 6 (and not a baby anymore...)

To help us celebrate I have a guest blogger.

The words today are by AA Milne
The photo's are by me.

When I was one,
I had just begun.

When I was two,
I was nearly new.

When I was three,
I was hardly me.

When I was four,
I was not much more.

When I was five,
I was just alive.

But now I am six,
I'm as clever as clever.

So I think I'll be six
now and forever.


Tuesday, 11 September 2012

2 Years on...

Warning - this post is not for the squeamish.

It's two years since I was diagnosed with Chronic Myeloid Leukaemia (CML), and I am still here.

Today I went for my yearly bone marrow biopsy, last year I had a panic attack just before they sedated me. This year they put the needle in quite a few times but I didn't have a panic attack, which was. er.. nice...

But today didn't go well. They couldn't get the needle where they wanted (despite trying repeatedly) so couldn't aspirate (not entirely sure what that means). So now, instead of going into the back of my hip, they are going to arrange another appointment with another doctor to try to do the bone marrow biopsy from my sternum. OMG. Seriously. OMG. The doctor's words when she told me this were 'you're not going to like this'.

Bone marrow biopsies are not nice. The doctors will numb the area where they put the needle in and then they put in one of these needles (below). I am not entirely sure which they use and how, but my husband says that one of the needles has a mini saw at the end and they put their full body weight on it to get through the bone.

The other thing I know is that the anesthetic and the sedative do not stop the pain when they get to the marrow. The advantage of the hip biopsy is that you can't see it. In my sternum, it will be right in front of me...holy s**t!

Today is my yearly reminder that I have this disease. Most of the time I forget about it and carry on. 

After two years, my family, friends and colleagues have stopped doing the head tilt and saying 'but are you', I'm still here, I am well. I think they are starting to believe me. 

I take my 4 little pills every day, have my blood tested every 3 months and try to ignore the side effects, the breathlessness, the fatigue, the sweats, the pins and needles in my hands and the muscle aches. I largely have a normal life.

My eldest daughter thinks I am lazy, because she only see's me in the mornings when I get her ready for school, or after work when I am exhausted or at the weekends when I am getting my energy together for the week to come.

I can't get travel insurance which covers my disease, not even if I pay more. If I wanted to change jobs (which I don't) would anyone else employ me?

Today my husband and I are reminded that I am ill, that I need tests and procedures regularly. Yes, I'm lucky, lucky it isn't another type of cancer where I need the type of chemo where I throw up and my hair falls out. Yes, I'm lucky that they can probably keep my cancer at bay for many many years (with the tablets I take they can give me 13 years as that is as long as they have been around for, but the results are good). I'm lucky I don't have to have lumps cut out of me. I am lucky because 2 years on, I am still here. Ten years ago, there is a very reasonable chance I would be dead by now. 

But I am unlucky, CML most commonly happens to people over 60 (I found out when I was 42), it is more common in men. I have cancer. I would rather be healthy. I would like to feel confident that I will be around for my girls and my hubs in the years to come. 

Today, I am sore and uncomfortable and feel about a hundred years old. Tomorrow, I will wake up feeling like I have partied all night, with out the joy of having done anything.

I initially blogged about this here and I am a little disappointed in myself for the above as that initial post was way more upbeat. Then here when the reality of my disease was kicking in. 

Anyway, had a bit of a crap day, so apologies for the pity fest. 

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