Gone but never forgotten

This is Rachys mum, my beautiful daughter passed away at 20.45 on wednesday 26th october 2011, she was so brave as she knew time was running out, she had everything planned and worried about everyone else especially me other than herself, she was so brave and a selfless person. I know she helped a lot of you with lung disease and for that we are very proud parents. I just want to say a massive thanks to you all for all your support and kind messages. Also to the lovely Holly Shaw for being there for her and visiting her right upto the end, as i know it was hard for u at times to slowly see her dieing. ( A true friend), she loved the hand massages you used to give her. Also lovely Katie Mason (another true friend) for coming all the way from London to see her bessie i know it was difficult for you but we are very greatful as it made her so happy when she saw you in her last days. Both Holly and Katie dressed her room up to make it homely, she loved it. She was a true fighter and fought to the end, we will dearly miss her, she as left a massive hole in our hearts that will never be filled, she was my best friend and i was her rock as she would often tell me, we were inseparable. Love her so much. R.I.P. My beautiful angel. Xxxxxxxxxx
Her funeral takes place on friday 4th november at 1.15

Thank you

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Rachael Wakefield, a life lived surrounded by love, with my second chance of life time is now precious, I'd like to thank all and everyone for your continued support, love to you all xxx Rachy xxx

(Posted by Pete on behalf of Rachy)

Hello everyone, Holly here again. Rachy has asked me to update you all on how she is doing.

Rachy continues to be poorly but she is stable. She has decided to discontinue the bi-pap as it was too uncomfortable for her. Rachy is now on a pain patch to keep her pain under control and this seems to be working ok at the minute.


I visited Rachy tonight and after a nice hand massage (from yours truly) she looked at her facebook wall on my phone. She thanks you all for the lovely messages you have been sending her; they mean a lot to both her and her family.

Will try and update again soon when I can,

Love Holly x

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!