Dear Confudulated,

What a tragic story – It’s no wonder that you are already heartbroken. No parent should have to see one of their children go before them. To lose a daughter at such a young age is almost incomprehensible. I lost a brother at 28 and my mother never got over the loss until the day she died.

It must be so difficult when your daughter is non-verbal and does not understand what is happening. Please try not to blame yourself. The onus of cancer does not fall on your shoulders – this is just bad luck and is certainly not your fault. A cancer diagnosis affects the whole family and, as such, your other daughter will sadly soon come to understand the gravity of her younger sister’s diagnosis.

Most of us find night time difficult, as this is when our brains go into overdrive. Have you seen your GP since you got this diagnosis? S/he may be able to give you something to help you through this difficult period. I sincerely hope that taking Tamoxifen will succeed in slowing down the whole process for your daughter and give her more precious time with her family.

Do please keep in touch. You will come to find this forum a great help from others who know exactly what you are going through. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

  Thank you for your kind words and sorry to about your brother.

Have spoken to my GP sedatives and me don't get on so it's just a question of me training my mind

to be still.

Everything really hinges on the Tamoxifen an as she hasn't been on it very long we just have to wait and see, Learning to be more patient is another learning curve :)

Hi there ...

I cannot comprehend just how your coping ... it must feel overwhelming right now ... and my heart goes out to you ... just when I thought this cancer couldn't get cruler , it does it again ... I hope you get some advice , yet it's heartbraking thinking of anyone else going through what your family are right now ..

So I'd just like to send you all a vertual hug.... it's times like this I wish we had a magic wand for times like this ...  Chrissie

Thanks, Chrissie

All hugs are gratefully received virtually or otherwise :)

My emotions are all over the place at the moment, But everyday life has to go on and that does help

me just doing the normal stuff.

Being a bit of a Potter Head I try to remember this Albus Dumbledore quote

"Happiness can be found even in the darkest times, If one only remembers to turn on the light"

The hardest thing is that because of her autism she if she doesn't feel like socialising then she won't see me or any of the family,

But she is happy in herself at the moment and that is the main thing.

Love and Light 

Hi ime so sorry about your daughter but pallitive care is realy better care for cancer when that name was mention it sent shivers of fear just the name i beleive they can deal better with pain releife suply physio all the things your daughter needs in my case with liz it was so quick she had two types of rare cancer but stroke and sepsis took her in two days .i had rung mc millan nurse and they were going to send pallitive team out  they can get things done quick and give you better help than waiting for months for hospital to do the same sorry i cant say anything to make you feel better hope all goes well just one thing i say it everyone now its so important make shure your daughter gets exercise and stays well hydrated cancer an chemo makes blood sticky and flows slower also complet hygiene nurses will explain about putrena sepsis at chemo sessions as immune system gets very low regards p 

Thank you for your advice and concern for my daughter but unfortunately she is unable to have chemo or any other treatments other than tamoxifen hormone treatment , Her disabilities and lack of comprehension of what is going on have caused many difficulties. We and her care team decided quality of life was more important than putting her through things that would not understand and would distress, upset and frighten her and not cure her of the cancer.

it was a tough call but the best one for our daughter.

love and light 

My apologies i thought you were worried by the pallitive care word .cannot imagine how you must be feeling right now but realy i was just saying about hydration sound nothing but so so important .i realy wish you the best .p

Dear Confudulated,

 I am glad to hear that you have seen your GP and can understand your reluctance if sedatives don't agree with you. Have you considered a mild anti-depressant instead? This can be a help too.

Kind regards,

Jolamine xx

Thank you

And it is great to hear how well you are doing xxx

The care home gave her a pamper day to day and she thoroughly enjoyed it :)

Take care love and light x