A Year later…

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 🙂

 

 

12 comments
adminA Year later…

12 comments

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  • Julie tullin - October 9, 2016 reply

    Hayley as always your my inspiration, your love for your children is amazing and the way you always put them first. Love you to the moon n back

    admin - October 9, 2016 reply

    Thanks Jam, the children is what’s keeping me going.
    Love you too xx

  • Deborah - October 9, 2016 reply

    As usual a very humbling experience to read your blog (no seriously…….even me 😉 ) and I can’t even/don’t want to imagine what you must be feeling inside!!!! I’m so glad the GSO seems to be working out, not only are you brave in fighting this crap disease………..you are brave in making life changing decisions for the children and letting them ‘go’ must be the hardest thing of all, the stuff any parent would dread!!! I may not be very ‘present’ in your life but you are OFTEN in my thoughts (how could you not be, I nearly get run over every time Vince visits the neighbours!!! 😉 You just keep on ‘keeping on’ and never be afraid to ask for or accept help……….. it will be given freely 🙂 xxxx

    admin - October 9, 2016 reply

    Thanks so much Deb, your kind words and wishes are great fully received xx

  • Janette - October 9, 2016 reply

    Miss Hayley
    Well, I have previously and still am always in awe of your ability to give and teach your children so much
    Diy, bikes. Gardening, life.. they have a totes amaz mum who achieves way more than I have ever even imagined teaching my 4. I may have to get them round to teach me a few skills’
    Big snogs muffety x

    admin - October 9, 2016 reply

    Thanks Netty, for your lovely message xxx

  • Sally W - October 9, 2016 reply

    I think about you a lot hayley, your children will be able to look back and know what a fantastic mum you have been for them. We all hope that you will be able to carry on doing that for a long time yet but you are being amazingly organised, and brave too, in making sure you leave everything for them as well as you possibly can. Despite the cost and intricacies of the guardianship order, it sounds like you have been so very fortunate to find someone so obviously loving and generous to be able to offer your children the opportunity to continue a family life where they are loved and cared for. It must be a huge relief for you to know that is there for them. I send you all my love and positive thoughts, as ever. xx

    admin - October 9, 2016 reply

    Thank you Sally, it is the hardest thing I’ve ever had to do. I do hope and pray that I am here for them for many years to come x

  • Sarah - October 9, 2016 reply

    You are such an amazing lady – your children are your inspiration as you will always be theirs. Keep strong, big hugs xxx

    admin - October 9, 2016 reply

    Thank you Sarah, sending you a hug in return x

  • Denise - October 9, 2016 reply

    What a wonderful way this blog is of leaving a legacy for your children. I’m sure many children would love to have something like this, regardless of the situation. You have such a wonderful, natural way with words. Keep strong dear friend xxx

  • Sian - October 12, 2016 reply

    Every time I see you I’m amazed by your strength to keep going no matter how hard it is & wish you the strength to keep on going for as long as possible. Love & hugs xxxx

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