I am a year on from my terminal diagnosis, it is nearly three years from my primary diagnosis.
I really don’t know how to feel about it all at the moment if I’m honest. The year has flown by, we have recently got into a new routine where the children stay with Paul and Becca two days per week. This is a great amount of time for me to recharge and relax knowing they are in safe hands. this then gives me a lot more energy to get through the weekend without feeling exhausted. All five of the children seem to be settling well with the new routine.
I have started writing down all the important information in a little book for when I’m no longer here. I am hoping this blog will continue with all the great things the children will do and become, so they can read it, so it can all be shared with everyone. The children then can show their children.
The GSO (Guardianship Order) has started, the children have been interviewed. Vince especially fund this painful and cried as he wants to live with me always. He knows this cant happen. They all have amazing times making a family of four to seven. I get sent lovely updates and sometimes pictures of what they are doing. I will post some on here soon. The GSO will enable Paul and Becca to make decisions about the children if needed, for example. in an emergency situation I give them permission to make a decision on my behalf. The GSO order is a very complex order. lots of professional bodies are involved and this isn’t cheap, its approx. over £1000. Nothing is simple in the process of dying young. when the GSO order is complete I will then focus some of my time on organising my funeral.
As you can probably tell by this jumbled blog that I have so much stuff in my head that I need to ‘file’ it soon.
I would like to thank Claire Searle, a mum at our school who is running the Great South Run at the end of the month and trying to raise money for us. It is really appreciated Claire. Thank you.
My ‘nerve ending pain relief’ I am taking is on maximum dose. My Rowans/Macmillan nurse is letting my Oncologist know this. I am having pain in my pelvis and pains going down my legs. It is likely I will need Radiotherapy again, this will hopefully help with the pain, its just a ‘wait and see’ for me with that one at the moment.
That’s all for now folks,
Please can I ask you: if you wish to ‘make a comment’ please can you do this on the blog and not on social media, this gets ‘lost’. I would like the children to be able to read them at a later date. Thank you 🙂