More than just a bag lady

I had a bet on with my Grandad that I couldn't stay out of hospital for 6 months. If I did then he would give me £50 to have a night out with Hubby. At the time I thought that there was no chance of me ever managing 3 months with no inpatient stays let alone 6. But do you know what? I've done it. That's right. Six whole months without a nights sleep in a hospital. It seems too good to be true. This time last year I had been battling line infections that meant I missed the first few days of my holiday to the Isle of Wight. But I think that the alcohol that in inject into my Hickman line every morning when I disconnect from my feed is doing its job of keeping all the nasties out that cause the infections.  The sad thing is that my Grandad isn't with us any longer to celebrate with me. I know how chuffed he would have been at me keeping well and off the wards.  So Grandad, you owe me £50. And when my time comes to pass through the pearly gates, watch out! I'm coming to...

I went to visit the GP this week. But this was not my usual lovely, friendly GP that knows my history, understands my condition and appears to show genuine concern for not only my well being but that of my entire family. No. This was my first visit to a GP in Nottingham and to be honest, I'm not impressed.  I needed to get some medication that is normally on my repeat prescription. However, being a new patient the policy of the practice is that a doctor must see me before they will prescribe anything. Fine. I've not got a problem with that. Seems pretty sensible to me. What I have got a problem with is there not being any appointments available for 2 weeks. "Can you wait?" the receptionist asked. Er, no is the short answer. So I had to have an emergency appointment that day as that was the only way that I could see the doctor. Crazy.  The doctor that I saw asked for a brief background to my request for morphine. So I took a deep breath and began. The more I talked the...

Sorry I haven't blogged for the last couple of weeks.  Sadly my family has had to cope with the death of my Grandfather. I'm really struggling to even write this as words cannot explain how I've been feeling and the effects that this has had on my entire family.  Firstly, let me tell you a bit about my Grandad. In my eyes he was an amazing man. He had a huge influence on me growing up and although I knew he was old (he was 86) I childishly thought that he would live forever. You see he was this big, tall, strong man. He had been a miner for most of his life so he knew what hard work was. But he was also a very caring, gentle and loving man too. I spent lots of time with him as a child going blackberry picking, walking along the river, discovering secret paths in the woods, growing vegetables in his garden and going to the local market. We were always outdoors, always having an adventure of one kind or another. We did simple things, things that didn't cost anything but h...

In the midst of saying goodbye to everyone at school on Thursday I received a phonecall that turned my world upside down. My Grandad was dying and I needed to get to Nottingham soon.  He was diagnosed with terminal cancer only 2 weeks previously and the doctors had given him around 6 months. We were all confident that he was going to be around for a little while yet, so much so my parents still went on their holiday to Turkey that had been booked months ago.  But since receiving the diagnosis he seems to have deteriorated so rapidly that he was now pretty much bedridden and needing full time care. So on Thursday when I received the news that he might not last the weekend I had to make the decision to call Mum and Dad and get them home early. I was already very emotional that day from all the goodbyes at school so I knew I wouldn't be able to hold it in when talking to Mum. So thankfully Kelly (my little sister) said that she would do it instead.  I knew I needed to get up...

It was the kids last day at school yesterday, but it was also my last day there too (Yes bitchface it's all about me, me, me!) The kids seemed quite content that they had half a ton of haribo to take with them, their cameras, an autograph book and a handful of sharpies for their friends to sign their school shirt. Big Girl had her Hip Hop Pop street dance class before school and at the end of the practice the instructor sent Big Girl out to get me so I could watch them perform the dance that they had been learning. Normally I video everything but I stood there watching her dance with her friends and trying to soak up every last moment and commit it to memory. And with my memory the way it is that's no mean feat! Then it was time for them to line up in the playground and go into class. I gave them both a kiss and cuddle and told them to enjoy their last day and then the whistle blew. And as I watched them walk into their classrooms I realised that it was the last time I would ev...

The days arrived. It's the last day for the kids at their current school before our move to Nottingham. It was 6 weeks ago when we started letting people know that we were moving and that time has just flown by. I'm looking forward to going to Nottingham and being closer to my family but boy, oh boy am I going to miss all the brilliant friends I have down here.  Some of these friends have witnessed the journey that our family has taken over the last 6 years (some have even been around longer than that, they must be mad!) and the support we have received has been incredible.  I went from being a bright, bubbly, vivacious 20-something to nearly losing my life more times than you can count on one hand. I've gone from being a stay at home Mum, to working and then a 'sicknote' and needing plenty of favours from friends to keep everything ticking over. The kids have grown up and gone from being little ickle kiddies to ones that answer me back and cause me stress and worry...

I'm currently sitting in the treatment room on the Intestinal Failure Unit of St Marks hospital. Thank goodness though it's nothing too dreadful this time. No line infection or anything like that, so don't panic Mother! My Hickman line has a fracture. That's the medical terminology to say that it's split. As I was disconnecting my feed yesterday I noticed that there was a tear in the line towards the end (below the clamp but above the bionectar) My first reaction was "Shit! Shit! Shit!"  My second reaction was "I really haven't got time for this to be be happening right now" My third reaction was "I hope I don't end up with a line infection" My fourth reaction was "Calm down and ring the specialist nurses at St Marks" So that's what I did. They have a patient hotline and you call and leave a message. I'm terrible at leaving messages; I tend to waffle on and on, repeating my name and telephone number numerous ti...