A Mum's blog

Something I wrote

2010-07-28T17:11:01Z

Just something I wrote, I'm sure any English teacher would tear it apart as a 'poem'.

WHY is this “thing” in my daughters head?

Was it something I did? Or, something I said?

Did I feed her right? Did I treat her wrong?

Has it really been there all along?

For 14 years I have watched how she’s grown

I didn’t spot it, should I have known?

Such a happy child and full of life

She should never have had to go under the knife!!

How can I make it go away?

I’ll take it, I’LL TAKE IT

Don’t make her pay,

Don’t let this thing take away her life

Let her grow old, let her be someone’s wife

If only I could find a cure,

No more worry of death’s door

If only they would find a cure……….

Raising Awareness

2010-01-23T21:59:12Z

Just thought someone might like to see these pieces that have been in Wales' media this week, trying to raise awareness for the petition for more funding for brain tumour research in our corner of the world

http://www.walesonline.co.uk/news/health-news/2010/01/20/mother-calls-for-more-research-into-brain-tumours-91466-25638083

http://news.bbc.co.uk/1/hi/wales/8473493.stm

It's good to talk!

2009-09-28T13:43:24Z

Glad to report I am feeling better, and have done for a few days. I didnt get to talk to the Latch social worker as Holly was off school the day she was due and I didnt want her to know anything about it so I cancelled. So instead, I let it all out to a friend. I'd already warned her about my frustrations at people trying to say the right thing and it just making me feel worse - and not to use the word NORMAL! - I just needed someone to listen without judging. I was a little wary because this very good friend has had quite a lot to deal with herself (altho not illness) and has always managed to remain so positive, I thought perhaps she would be trying to get me to LOOK ON THE BRIGHTSIDE which i knew wasnt going to work. I couldnt have been more wrong. She listened, was fantastic and I felt alot better for it too. In fact, she said she wasnt surprised by anything I had said, on the contrary, had been wondering how I hadnt got to this point sooner! It was such a relief. And now the words have been spoken they do not swim around the forefront of my mind 24/7 - just the back of my mind 18/7 :-) because this will never go away or be far from my mind but because I am sleeping a little better now too.

I still have the option of speaking with the social worker if and when I need it, in fact, she contacted m this morning to see if I want to see her tomorrow but I've said I'm ok for now.

The other thing that has helped is the meeting I had with the school and the P.O.O.N. - (Paediatric Oncologist Outreach Nurse! Haha!). Another shining example that communication is so important. There had been a disctinct lack of it which had lead to Holly being treated as normal in school - "This is good" I hear you thinking - but no, it wasnt, she was so so tired and frustrated and scared of falling behind. She was getting so tired she had to take days off but then falling into a catch 22 because she had to catch up on what she had missed.

But, with good communication this has all been rectified, the school and nurse have been brilliant and Holly's timetable has been adjusted to suite her. As she will be choosing her options for GCSE at the end of this academic year, she has dropped a few subjects which she knows she will definately not be taking, freeing up some of her lessons, she can use this time to go to the lsa unit and either just rest or do her homework (so in the evening she can rest properly too). This is such a weight off my shoulders and Holly was pleased and relieved too.

So, tomorrow I attempt to go back to work again. But, after last week I have arranged to work part time for now (Tues Weds Thurs) and see how that goes! I know I need to strike a balance so, fingers crossed!!.

As ever, thanks for reading, hope it makes sense cos I never read back what I have typed before publishing and i tend to type as I think! X

Feeling LOW LOW LOW

2009-09-24T22:01:47Z

I didnt go to work today. Have only been back 3 days but I couldnt face it. I cried all day instead. I did call in on the friend yesterday evening and tried to talk but I knew she wasnt getting it so I gave up. In people's efforts to help, try and make you feel better and NOT say the wrong they, they desperately try to clutch at straws and say positive things which really dont help. I just want someone to listen! I know I sound really horrible and ungrateful which I am not, at all, I do understand it from their point of view, they just dont from mine.

I dont know what I'm going to do about work now, if I stay off work I am due to go onto half pay which I cant afford to do, but cant face being there... its too normal!! I also then beat myself up for not going, or wanting to go, because I think "Well, Holly is doing well right now, she's in school and there's nothing wrong with me so I SHOULD be in work" . I feel pathetic for that.

Anyway, I have a social worker from LATCH a Welsh charity coming in the morning and hopefully I can talk to her about how scared I am feeling etc and she can appease me and stop me going out of my mind for another few days.

Have a meeting with the outreach nurse and the school in the afternoon as well - I am SO cross with the school right now too so that should be an interesting meeting! Will blog it!

Thanks for reading (if anyone does haha!)

I never thought I'd be a blogger!

2009-09-23T11:00:00Z

In fact, I'm not sure I am still. But I am a sad, frustrated, Mum of a beautiful 13 yr old with a (Insert your own swear-word here) brain tumour! (Astrocytoma)

At the moment, we are in the situation where my daughter has had x3** ops over the summer holiday - non of which have actually helped her - she has recovered well from them so is fortunate enough to be well enough to go to school and I return to work. However, I find this has left me screaming on the inside. Because she is well and in school everyone around me has adopted a kind of 'Oh well' back to normality' attitude which I am increasingly struggling to cope with. Don't get me wrong, of course, I am delighted at her recovery and at how well she is at the moment. I am just SO SCARED at how long this may last.

I know there is nothing anyone on this site can do to help, and Lord knows, you all have your own c**p to deal with, I just feel like I need to get it out there!

Thanks for reading.

** The 3 ops were:

1) Endoscopic biopsy (inconclusive) and insertion of drain/reservoir

2) Removal of said drain/reservoir due to infection

3) Open biopsy/craniotomy with view to debaulk. Unsuccessful on both counts.