Published on 12, July, 2020
Hello my friends, I'm posting this in autistic adults because you are my friends and family.
My son also autistic had a lump (gp had insisted it was just a little fatty lump and nothing to worry about) removed from his head privately on Thursday evening. The surgeon was a little bothered when he found blood clots not fatty tissue, then went dead pale when he found a hole in sons skull. He packed it and took us to A&E.
A&E didn t believe him!!!! Eventually after a cat scascann 7 hours later they did believe and blue lighted us to st George's hospital in london.
So son has a 25 mm lytic lesion in his skull and cancer. How do I tell him? He knows about the hole, he knows it's not good but he's not got a clue about death. People die, they are meant to. He loves our cats but once they die they are gone. I don't know what to do or think it say.
I am not asking for attention or sympathy, just for advice on how to deal with this for him and for me.
Song
Ah, I see. Sorry about the mix-up.He's the same age as me.Hope he has a great birthday, Song. The adult branch of the hospice is where you want to enquire further for help, I think (and my local does have special provision for 18-30 year olds), but I'd leave it until after today; just have some good time together as a family now. x
Sorry everyone I should have said son is 27. (Tomorrow 18th Sept)
He is going to have a brilliant birthday. We have just wrapped his presents.
Thank you every one
Keep talking to us if it helps.
Thinking of you. So sorry things are difficult right now.
What dreadful news. Excellent advice above from others re: Macmillan/childrens hospice etc
Oh Song, so sorry to hear about this.
Macmillan were really helpful for me re. information when my dad was terminally ill last year and the local hospice have been amazing, both when he was there and supporting us afterwards.
There are usually specialist places for children in such a situation. Could you get in touch with your local children's hospice or the children's branch of your main one if that's how you are set up locally and ask for advice from them?
They will have a lot of experience in approaching this issue with children and supporting parents in your situation and from my experience hospice staff are the most flexible and sympathetic people in the healthcare system full-stop when it comes to individual needs like autism, for patients and family alike.Hope things go as well as they possibly can, thoughts are with you both x
Spend some time getting your own understanding sorted out.
and ask the hospital to direct you to support networks than can help you talk to your son about everything.
Wishing you all the best in this difficult time.
Death is being mentioned by them at the hospital.
Does death need to be mentioned? What kind of cancer does he have and what is the prognosis?
He will need to have the concept of cancer explained to him and also any treatments. But death is a tricky one. It doesn't have to be part of cancer so would be one to approach only if it is necessary.
Contact Macmillan and have a conversation with them, they have so much experience with all kinds of situations so will likely be able to give you help and support.
Sorry your son and you are facing such a rough time. I have been through the cancer journey with too many of my own family with both good outcomes and unhappy endings.
There is no right or wrong way to feel about it all. I hope you can find the help and support you need.