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!)

Good idea to start a new thread Droile.
How is Monday morning, with DS1 back at school, etc?
Droile, alongside all your 'barminess' and the other difficulties in what you are going through, are you managing to experience your 'everyday days' with DS, and do the things you normally do with him? Or are you constantly having to do a big unbearable act? Are you on your own with him for most of each day?

Hey Droile, Blu's aked it allfor me so I'll sit back and wait for the relpy
Hope you're ok babes.

I have been reading this thread of course but have not known what to say until now; I have just discover that some very old friends' 5yr old boy is in GOS undergoing a second op for lesions on the brain and spine.

Sadly, now that it has touched my own life, however peripherally, I just want to say how fordimbley you and your family are coping with this devastating event.

Hello Droile. I'm with TC on this, we would all like to hear how you all are.

Hi, good question Blu & co. I'm on my own with him for most days, apart from pre-school mornings and childminder while I work (2 days wk). It's hard motivating myself to do the usual things because i feel like doing b**ger all, but I don't think he's noticed because he's a happy, self-contained little chap. I put a face on for most of everything atm. Halloween function last night was awful - I didn't enter into the spirit of it till 2 mins before the end. I'm similarly dreading bonfire night - just have no heart for anything and I feel like ds when he's in the mood to say that everything is 'stupid'.

Suzywong, sorry to hear about your friend's boy, let me know how he goes on.
Batters, I've CAT YOU.

Oh Droile, this is obviously so hard. I do wish you were getting some proper suport to help you through this - like a Macmillan nurse, or someone who knows what they are on about. It's v cruel - this is the time you should be able to enjoy and share DS's experiences of things like Halloween and bonfire night, and enjoy the here and now of being his Mum, esp before he starts any of the more challenging treatment like the chemo.

Could you perhaps find a way to focus on the next milestone - the neurologists change of drugs, the chemo or whatever, and think 'well, we'll carry on as normal til then'? Set up the next milestone or intervention as the next big event on the horizon, visualise it as exactly that, a big screen on the horizon, saying 'visit to neurologist' or whatever...and a screen so huge that it blots out your vision BEYOND that milestone. Because in a way, that's what it is like, isn't it? You can't see what's next, or know, really, 100% what will happen in the future. So keep yourself in your current safe seizure-free world THIS side of the next milestone.

I'm not trying to make light of this Droile, I know no pat answer or platitude will do, but if there is one little way to give you one 'normal' feeling minute with ds, then it will be a valuable minute, for you both.

Droile - that's a spot on post by Blu. It is really tough to do but it does help. When dd was little and had lots of appointments I even stopped putting them on the calendar because every time I glanced at it, there it was slapping me in the face. You're not exactly likely to forget about the next step but you don't need it in your face either, I expect you have it there anyway with daily drugs and watching for signs of something not right.

Take little steps, enjoy today, for what you have today. ((Hugs))

Droile- have you met anyone going through the same things. I think having someone to chat to whose "normality" is the same as yours makes life considerably easier. You don't have to explain anything they just "get it".

I agree - you need some support with coping strategies etc. Have you been offered any help?

We haven't been offered any official help, but a number of mumsnetters have given me the numbers of friends who've been through similar things, which I'll be ringing. (I'm bad at phoning).

Hi Droile. Once that phone is in your hand and the number dialed you'll feel much better, I'm sur of it. You really need to look after you. TC x

Good - I'm glad you've got some contacts.

Slightly amazed that you haven't been offered any official help though

So glad you responded positively to Batters' CAT Droile .
Have you still had no luck with Macmillan? I will CAT you anyway and I think some of the rest of us better start carpeting their ansaphone with messages.
Thinking of you all so much, as ever. M XXX

I think the thing that Bakabat says about being with people whose normality is the same as yours is important. And 'just getting it'.
I wonder if there is a Contact A Family scheme for this in your area? They put you in touch with families going through the same thing. Does anyone know anything about it?

Glad you've got people to ring Droile. Was asking my mum this weekend about her friend's son (my age now) who had a tumour at 5. Wish I could put you in touch with each other but not sure how to go about it. Think you said your son can't have radiotherapy?

Droile - I only saw your previous thread a few days ago and I just wanted to say I'm thinking of you and of your ds. Take lots of care and I hope getting in touch with others who have been through a similar thing will be helpful for you. xxx

Thanks Wilbur.
Yes Tinker, he's under 5 so they won't do radiotherapy, except as a last resort, because of the damage it does.

MacMillan nurse rang back today and is coming in a couple of weeks. A better week, really.

have been thinking about you droile and your family
hugs to you and all
xxx

Glad this week has been a bit better, Droile. Was tonight ok? You said you weren't really looking forward to firework night lower down the thread. I do think celebratory events can be really traumatic when you are full of worry and sadness, even when you also want to get something positive from the moment. Hope it went better than you were expecting and that the rest of this weekend will too.

Droile please pick up the phone and call Nina, I'm sure you would find it helpful/cathartic/informative/all or any of these.... she'd love to talk to you.
XX

Message withdrawn

Droile, I have been thinking about you so much. Have nothing useful to say, just that - that you are in my thoughts.

Thanks - I will phone them (I know I keep saying that...)
Bonfire night was ok because I'm ill with a virus, so DH had to take them to the party by himself. They all had a great time.

Aww. I hate it when everyone has a good time without me! Seems so unfair- even when I'm not looking forward to something anyway. Glad that your menfolk had a nice bonfire night though. And sorry you're not feeling too hot.

Would it be easier if people phoned you or would that be just as bad? I am appalling at phoning people but always v happy when they phone me. Are you similar or is it then awful waiting for the phone to ring? I'm sure we could engineer getting your phone number out to the people who've been mentioned as potentially helpful if that would help at all.

Keep warm and get better soon. xxx