Autistic Daughter and terminal breast cancer

After several months of being silent, the tumour started growing aggressively again. The tamoxifen just isn't working anymore.

My poor baby is in pain but she can't talk to me about and has no idea what is going on, She is on morphine patches to help with the pain and she now uses a wheelchair on outings as she gets tired and out of breath so quickly.

The care home and staff are amazing and so supportive we are struggling with how to cope with the emotional side of things.

She did have a trip to Disneyland Paris booked but that has been cancelled now as she is too ill to travel.

I'm trying hard to find some positives out of all this but I can't! it sucks and hurts like hell.

This week her big sister excepted that her little sister is dying, I don't know what's worse to see the hope in her face that her sister was going to get better, and me  knowing that is wasn't going to happen, or the sadness and the held back tears

that I see now.

I hate having to be strong and I hate being angry and I hate feeling useless.

Friends and family say if you need anything we are here for you, the problem is I don't know how they can help?

I've always been so independent and real-life carries on, you still have to work, Bills still have to be paid and as I don't have a house elf the housework still has to be done. 

Sorry for the wingeing and self-pity, the last few days have been tough and I needed to get things off my chest.

As my Nanna used to say "you've had your cry, now dusty yourself of, blow your nose and carry on. There's no use borrowing trouble, It'll find you soon enough!."

I miss me Nanna x

Thanks for letting blow my emotional cork

BB

Confudulated

  • Oh my ... if only we had a magic wand for your daughter ... you have been amazing ... but I don't know anyone that could do anymore then you are ...

    We all loose parents, siblings , untie, and uncle's etc ... and that is heartbraking ... but loosing a child is something we can't handle ... your no way winging ... and self pity ... I'd be screaming the house down ... your a wonderfull mum and please never think your self pitying again ... 

    They are always our babies , they grew inside us ... and our first thought is to protect them ... I've come so close to loosing my son on a couple of occasions ... and just stayed listening to him breathing through the night and scared if I fell asleep I'd loose him ... 

    You know I can think of things that may help, but on our babies, i just can't comprehend... but please reach out to anyone who can hold your hand right now ... though it must be overwhelming ... know your not alone .. we can't take it away or make it better .. but we can hold your hand on here .. where you can say anything ... but please be kind to your heart ... and know you don't have to be strong all the time .. 

    My heart goes out to you from one mum to another ... cancer sucks and makes me so angry that it can be this crule ... sending you all a big hug ... hold on ... wer always here

  • [@confudulated]‍  - I think the reply you have received from [@Chriss]‍ probably sums up what everyone else will be thinking and/or saying. 

    I'm a mother too, so I know this situation you're in really is your worst nightmare.

    Definitely don't apologise for letting off steam, or feel that you're somehow being self-pitying.

    Sending you virtual hugs. x

  • Just letting you know you've been heard. 

    Honestly finding it difficult to say anything, other than I care about what's happening. You and your family have been through so much. I'll hold you in my thoughts.

    regards, gamechanger

     

     

     

  • Thank you [@Superhero-daughter]‍ , some days I cope better than others, I don't know what i would do without you lot xx

  • Thanks [@Chriss]‍  you always seem to know the right things to say,

    I was feeling very low when I posted, that day xxx

  • Hi there ...

    Wer all like links here .. a part of a big chain .. that cancer tries to pull apart .. but wer strong ... it may knock us down.. and laugh at us laying there and wanting to give up .. but it's wrong .. we were only resting .. it's not about winning or loosing our journey .. it's about the heart .. it's about love .. it's about holding on, when everything looks bleak .. it's how we travel on this journey of ours ..

    It may take our bodies, but it can't take our souls ... hold on ... wer all here always ... whenever you need to find a little more strength to get through one more day .. sending you all big hugs ... Chrissie

  • Hi again,

    As the Dad of a young man with severe autism and associated SLD, I can only imagine what you must be going through. 

    This is the place for whingeing and there's a massive difference between grief and self pity. You have a lot to cope with - people mean well but unless they have a fully functional magic wand there's little they can do of practical help.

    Look after yourself and both your daughters - I wish I could write something more useful. If the patches aren't working, you could ask about oromorph syrup or powder which could be mixed in your daughter's drink to make it easier for her to take if she doesn't like swallowing tablets or pills. 

     

    Best wishes

    Dave

  • UPDATE:

    well, it is not brilliant, The morphine patches have been upped to 25mg and she is having oral morph 4 times a day.

    My daughter now has a special electric hospital bed which is making things easier for her and she is still able to get to the bathroom for her personal care etc, but she is fading and slowly slipping away from us.

    The care home team that is looking after her are amazing caring wonderful people I don't think I would be able to cope if it wasn't for them.

    But we have been told it's time to start making arrangements and plans,

    Cancer sucks big time!

  • Sending you all the biggest hugs ever ... cancer sucks ... says it all really ... hold on in there .. 

    Thank you for letting us know .. there's a lot on here that are feeling a bit of your pain ... always here if you want to chat about anything ... Chrissie