About Amberlight

[amberlight]

Just in case people wonder where I am, I'm undergoing treatment for breast cancer at the moment (eek)(not one of the simple sort, we think so far, but not totally disastrous so if they can hammer it with enough chemo and surgery I should be ok after 8 months or so). Operation yesterday to investigate it a bit more so a bit stiff and sore today. I'm hoping to be able to write something useful for the autism community about how to navigate through this stuff, since I don't think there's a thing out there (and 1 in 8 women, autistic or otherwise) now get breast cancer at some point in life.

Wishing you a speedy recovery! Love to you and your family xx

Good luck amber. love to your DH and DS.

Take care, make it a good excuse to be pampered :) Wishing you a speedy recovery!

Wondered where you were, you haven't been on the board much over the past few days.

Sounds like an unfolding picture, keep posting about what treatment you will be offered.

I will be thinking about you and your family; ds will hopefully 'come round' a bit when he gets over the shock.

Sending an unmumsnet hug, pat on the back or squeeze of the hand whichever is least stressful for you x

Sorry to hear that Amber, I wish you a quick recovery...I was just mentioning you on another thread and saw this. My Mum sends get well wishes too (she is not on MN but is very greatful for the info you sent her). Big hugs and keep posting. xxx

Amber I'm so sorry to hear this. All my absolute best wishes and hopes for a speedy, as good as it gets treatment and recovery.

Best wishes to your Dh and Ds as well x

best wishes, good thoughts, and prayers, take care

sorry to hear this, sending you loads of love xx

Good luck from me too Amber. You gave me some great advice when DS was diagnosed and I have got so much out of your posts.
I will be thinking of you.

Yup, dh is much better (thankfully) but I'm trying all I can to keep the strain off him through this one. Thank goodness for lovely friends and family. I will be accepting all the help and pampering I can get, I think.

I'll still be pottering about on here as I am the Worst Patient In the Known World and impossible to keep quiet for long, and it's very boring indeed staring at walls and reading magazines.

Amber so sorry to hear your news but crossing everything for you (explains my typing anyway ;-) )

I think online communities offer a lot and can heartily recommend the Macmillan website: having worked for them I know their ethos and wish to help is genuine and standards high.

God bless, you know where I am X

I will be thinking of you, Amber, take good care of yourself x

So sorry to hear this Amber. Wishing you a quick and full recovery, and hope you have lots of support for the coming months. xx

Very sorry to hear your new Amber - wishing you all the best

Sorry that should read - news

Sorry you are going through this amber, best wishes

Sorry to hear this, but glad it's been found quickly. Hope you can keep strong for yourself and for the rest of the family, too!

Glad you've found it. Good luck with the next wodge of treatment. You probably already know about the woeful lack of autism awareness in most NHS departments, I'm wondering if liberally distributing information sheets to everyone you meet would be practical.

I presume you have a breast cancer nurse allocated (sometimes badged as macmillan nurses, sometimes not). She may support you more effectively if you give her some detailed stuff to read. I've linked a few resources, they have some drawbacks but I think on balance are worth a look.

free article
subscription only article
book

The doctors and surgeons are likely to be a very diverse bunch, and patients can end up seeing several different people over the various appointments. The breast cancer nurse will get to know you, and she will know the medical team well. She could see which doctor's communication style would suit you best and then insist on continuity of care from that person.

Thoughts and prayers, not only for the treatment and outcome but also all the practical hassles.
maria

Mariamagdalena, thanks. Hadn't come across that book - very useful. Yes, I have a breast cancer nurse, and am part of a big online charity community for those with BC which is a great source of info and support too.

I'm an adviser to PCTs and healthcare providers on autism (very early days for most of them!) and it is indeed extraordinary how little they know of our situation. One nurse said to me "Oh, so what do you do when you're being autistic, then?" Er, umm, well...

When I had the diagnosis revealed to me, half hour later they wanted me to get into an MRI scanner with no notice at all... and have some 'contrast medium' (weird fluid that makes you go dizzy and sick) bunged into my arm at the same time. I survived only because I've had both things done beforehand and knew how ruddy awful it is. Otherwise there would have been the fastest 100m sprint the world has ever seen, hotly pursued by nurses and doctors

Have just read your news Amber and wanted to add my sympathy and support. You are one of my favourite people on here and have taught me a lot. We'll all be thinking of you here, you are very popular!

take care, treat yourself gently, best of all luck with your recovery.

Amber, I'm sorry to hear your news. I hope the treatment goes well and is successful and that you end up skin-coloured again! Please keep us all posted.

I will do - and huge thank yous to everyone who's posted - you're all lovely people

Just seen this, hope everything goes well for you Amberlight.
You bring so much to this board and I find your posts really interesting, I was wondering why you hadn't been around.