Hi it's Holly here, I have been to visit Rachy tonight and she's kindly asked me to update you guys via her blog.
She is poorly but stable at the minute - she is on Bi-Pap (non-invasive ventilator) 24hours a day. Doctors are currently working and focusing on pain management above everything else at the moment.

Although low in spirits she still had that beautiful smile on her face :) We even managed a little giggle about Rachy "passing wind". Due to the Bi-Pap pushing air into her lungs, some still manages to pass into her stomach, leaving her bloated and uncomfortable. Whilst I was there the nurse released the wind through a syringe (via her PEG), and we were giggling about her passing wind in a very lady like manner.

She appreciates all the messages, support and love that has been shown to her at this difficult time.

I will be sure to update you when I can, I am hoping to visit again on Wednesday evening.


Love you always Rachy.

Holly x

So here's a little update as much as I understand anyway. We we're struggling with pain control in my last blog. In my opinion we still are. I ended up having to go back into hospital for 10 days, where if I'm honest, apart from straightening a few things out, we weren't able to achieve very much. My needs were assessed which was helpful, I'm now suffering from bed sores which are healing well thanks to good nutrition, extra antibiotics, barrier cream and from being on the airflow mattress are healing well. But chest pain, investigation and relief of it is still an issue. I'm on slow release morphine and short acting morphine. What you want is to be on the lowest dose slow release morphine and need little or no short acting morphine. I'm still needing quite alot of short acting morphine so we're not quite there yet. I hate oramorph (short acting morphine) it makes me feel refluxy, sickly, drowsy and tired so I hate feeling like that so I hate having to take it. The side affects scare me, taking morphine scares me.
I also take IV Paracetamol. Paracetamol works amazingly well IV with hardly any side affects I prefer to use it but alone unfortunately it's not enough to control my pain.
At the moment my body and lungs just seem so unpredictable and it scares me. My own body scares me... I had another 'turn' on my first night at home, again I was doing nebulisers and it just felt like the 'space' in the room disappeared. I cried. Alot. I cried for me, I cried for mum, I cried for dad, I cried because I'm scared. And that's it, I'm scared. I'm scared the right people don't know I'm scared or even what I'm scared of. This is where I'm at now and this is the best things are going to get. That alone makes me want to cry. Mum is now carrying a bell system round her neck, that's how scared I am. Being alone scares me.
I didn't want this blog to be a negative one and refuse to end it on a negative note. I'm home now and getting back into a good routine which when you have a treatment regime like mine has got to be a good thing!

That's life

Sometimes I need this space to say things, to just say them, to who I don't care, I don't really care who's reading this blog and who gives a damn. It's my life and I'm going to live it the best way I know how because I can. And now at this moment in time I feel the need to say whats on my mind so I'm going to. I'm sick of the judgement and hate the mind games, if you think you can live my life any better than me then I'd love to see you try. The last few weeks have been tough to say the least. I can't wait for this month to be over and it's only mid month. I dunno I just don't feel like life is enough at the moment. Like life itself is not enough to keep me alive and that's a scary thought. Every day I wake up and I'm one day closer to dying. But isn't everybody? Of course they are! Because that's life and it's beautiful and magic and tragic and that's why I love it...
Health update to follow sometime in the week


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