DS has brain tumour - update 2

[Clarinet60]

Getting long again.
Batters, I got your CAT, thanks so much. I tried to email you but it bounced back, so I'll try again later. (My answer is positive!)

Droile sweetie, just to send you my love
xxx

Lots of love from me too Droile.

droile sending you best wishes Have only just seen this threa

Glad to hear your men all had a good time Droile. hope you're soon feeling better PLx

Message withdrawn

I'm leapfrogging this thread up over the other one!

Thinking of you Droile.
Wish you lived at the end of my garden. Well, no, why should I wish that on you...I wish I lived at the end of your field!

Thanks Blu, so do I
xx

How are you all Droile? What's happening this w/e?

Hello there Droile, I was wondering how your weekend was too. Very pleased that the Macmillan Nurse is finally in touch. Hope you are over that virus, there are some very aggressive ones in circulation. XXX

Hi Droile,

Good news on the Macmillan nurse front. Hope you have a good week this week

Been thinking of you too Droile - are you making some plans for Christmas or is that a bit too far ahead at the moment?

lots of love droile, thinking of you all x

Hi. Macmillan nurse came yesterday. She was very nice, but said that her role is really to help with chemo/radio-therapy issues, schools liaison, etc, so there wasn't much she could do for us yet. I asked her to go over the chemo issues, but she said to wait till next year when he's nearer to having some. She couldn't tell me anything about his type of tumour and said her role wasn't a counselling one. She's going to try to find out if there are any counsellors for parents in our position, but hasn't heard of any.

She was sympathetic about our discomfort with the number of people in the room with consultants when discussing DS's results, but said they had just cut it down from over 7 'extras' - doesn't hold out much hope for any more privacy. The clinic we have to take him to every 8 weeks always starts at 1:30 but there is no appointmentsd system, so we need to be prepared to wait there all afternoon. So it looks like DH & I will have to take it in turns to attend.

Plans for Christmas - sending out a round robin to friends we usually exchange presents with asking them to donate to Ronald Macdonald house instead. Hopefully that's one RR that won't be ignored.

Thanks for thinking of me.

Droile - that's a lovely Round Robin idea.

I am sorry that the Macmillan Nurses role isn't tailored to what you need atm - that mmust be a disappointment. I know I feel disappointed for you. But then i suppose we're all hoping for a little tiny something that might possibly make things more bearable, and perhaps that isn't very possible.
I keep thinking back to Baka's comment about needing people who automatically understand what you are going through. Can we arrange a meet-up with the contacts who have been thrugh the same thing?
Well done with your RR idea.

Oh, I'm sorry the Macmillan nurse can't help in some key respects Droile, and a bit surprised too.
Are you already in touch with this charity I wonder? Sargent Cancer Care for Children, N England Office

Ds' school has raised funds for the London branch after it provided sterling support for a schoolmate and his family.

I think the Round Robin is an excellent idea and I hope you get a magnificent response from everyone who receives it.

That's a bit of a crushing let down re the Macmillan Nurse. I hope she does find someone who can offer counselling. It seems scandalous - the lack of support.

Round robin - great!

Hiya Drolie, agree that RR idea is great.
Just wanted to say 'hi' really and let you know you're in no way forgotten. xxx

Droile - just 'chatted' to Doormat and she sends her best to you.

thanx tc
droile hoping everything is ok
xxx

I don't suppose the hospital has a support group of any kind does it? There were a few groups at Addenbrookes who used to have posters up on internal noticeboards.

Hope you find someone who can help.

Thanks for the link, Marina. I didn't see one last time disslocated, but I'll look again. The nurse said she thought we'd fall between several stools.

Still smarting from lack of emotional support for parents from any professional. Spoke to a friend yesterday who said a Macmillan nurse had been brilliant with her friend (breast cancer) with lots of information, etc. I think we are well & truly jinxed with this.

Better news on other fronts - an agent likes the first 3 chaps of a children's book I've been writing and wants to see the rest, so feeling happier.
xxxxxxx to everyone

Sorry about the nurse Droile. Good news about your book. Congratulations! Sounds excellent.
I am thinking of you.

I thought a Macmillan nurse would be more use as well - and that part of their role was counselling Again - I just don't know what to say, I feel completely useless because I can't say try x, y and z, that will help - but you really are in my thoughts a lot, Droile. Well, you all are. I think the Christmas RR is a fantastic idea - what are your plans for Christmas, or is that still too far ahead?

We're just going to stay at home, Marthamoo. Some of DH's family are coming. Both boys are really looking forward to it and so am I. I'm most looking forward to concentrating on them and not having to buy zillions of presents!