DS has brain tumour

[Clarinet60]

We finally got his MRI yesterday after waiting 5 months and there's a mass in the area that joins the 2 hemispheres. Of course, it was all systems go down to the childrens hospital in Manchester because the signs are that it's fast growing, that's why he's gone from 'funny turns' to daily seizures and then to 50 seizures per day. But when we got to Manchester, surprise surprise, they're not going to do his biopsy until 'some time next week' - he'll be slotted into their system.
So we came back home again.

He's well in himself, bouncing around like mad.
I'll let you know more when we know more, re benign/not.

Morning Droile. how's it going today? How's your head, what's going on in there?

So hon', what are the plans this week, anything happening?

Listen re lottie - just quickly, no need to feel for me sweet, i am, I was and I will be fine, and very, very lucky. It was hard for 2 days, then it got easier and easier and apart from the very odd and very short blip it's all good babes. I just know a bit about supporting each other and how important it is and also how easy it can be for it to go the other way.

Do you need fromn your friends than they are giving? Perhaps DH could give them a call on your behalf and just very nicely say that you are ok on the outside buthe's worried about you and he wondered if they could check in a bit more. They might just need the okay from him to pick up the phone a bit more.

i did see that programme with the little boy fitting and that's what i see when i imagine your little boy. what's happening with the head gear btw, is it on it's way to you?

Do your boys have ET on DVD? Would they like it? Let me know, I'll CAT you for your address if that's ok with you?

TC x

Been thinking of you too Droile.

Sorry about your friends Sometimes people just don't know what to say - they think they'll give you some space and then go the other way and don't get in touch at all. I lost quite a few friends after dd got out of hospital. They called whilst she was in but when we got home and the realised she wasn't 'fixed' they drifted off. On the up side you'll find better friends through this. Perhaps yours just need a nudge as TC says.

I'm an hour from Manchester so if there's anything I can do you only need say. OK?

oh Droile poor you
I agree that sometimes people think they are 'helping' by staying out the way, "she's probably got enough to think of at the moment without me phoning all the time", that kind of response but it's horrible for you when you need the support.

Whereabouts are you in the NW? I'm in stockport/manchester border

Oh, Droile, I did see that prog last week and also Your Life in their Hands recently, which was about children with epilepsy. It looked so bl%dy awful, my heart went out to them. Wish I could do something to help - I can't believe your friends are staying away.

Hi, lovely messages.
I think you're right re friends feeling overwhelmed and not knowing what to say - I've felt that way myself in the past.
It must have been awful for you and your mum Tigermoth, especially re misdiagnosis.
HMC that's lovely, I wish you lived nearer.
My head is still Odd, Thomcat. The health visitor came for a chat today, so getting ready for her gave me something to aim at and think about. She was there as a listening ear, as she can't actually do anything. As for headgear, he's being referred to an occupational therapist, so at least something is moving there. Nothing is happening with the hospital. I rang the surgeon's secretary and she said she'd get back to me.
Getting DH to nudge my friends is something to think about.
They don't have ET on DVD Thomcat, but they'd love it, that's so kind of you. You can CAT me.
Potty, sorry to hear about you losing those friends. I think that when things go on and on, people just can't handle it.
Katierocket, I'm northeast of Lancaster.
Thanks Suedomin, it was really sad, wasn't it.

well droile, if you ever want to meet up give me a shout. take it easy won't you, I can't imagine the stress you are under.

Thanks kr

droile - so sorry your friends are staying away. Don't know if it's any comfort (since it's over 30 years ago) but I went to school with a boy diagnosed with a brain tumour at 5 years old. He's survived the operation. Occasionally has to have further ops for new tumours but these have all been benign and are as a result of the radiotherapy not cancer. Keep us posted here droile, thinking of you.

Droile - will dig out your email and send you something that might be helpful about hospital oveall.

Droile unfortunately I think friends doing a runner is pretty common. Does the hospital have any sort of group where parents can meet. Friends going through the same thing are immensley helpful (and the shared circumstances lead to strong friendships quickly ime). No-one understands like someone going through it.
xxxx

Evening Droile. I know your head is bound to be odd babes, if you want to spill it it on here we're all here we're all ready and willing to listen and support you.
Glad the occupational therapy is moving along. Are you still waiting for the secretary to call back?I get what your saying about the HV coming today, that's where I was at asking what was happening this week, I thought we give you something to think about every day this week so when nothing that should be happening isn't happening iykwim we could find things to keep you busy. Letme know if you want to devise some sort of busy tiemtable! Sorry if that sounds silly, i just really want to be doing something to help and don't know what! Meanwhile I'll CAT you for your address and send you ET.
Thinking of you loads, TC xx

Thank you, you're all so lovely.
Jimjams, it's comforting to know I'll be making some good friends soon (I mean it, not being facaecious) and I think you're probably right about having to go through it to understand. I haven't come across any groups yet, but MI sent me some info tonight about that.
It is a comfort to hear the good stories Tinker.
Thomcat, the timetable is a really good idea! The sec didn't call me back today, so I'll call her again tomorrow. Thanks for wanting to help.
He had another bad fall today, this time in the garden. He seemed fine and hadn't had any fits for hours so I turned my back to see to the rabbit and crash, down he went. The silly thing is, there's a bike helmet he could have been wearing, but he made a fuss about putting it on and I thought we'd be safe for 5 mins.

What can we do to help you Droile?

Is there anything at all any of us can do to make things a little easier?

Please tell us...

For instance - would you like local mumsnetters to look you up and drop in for a visit - to either distract you / or talk about it (whichever is most helpful). Should we start a "Volunteers to visit Droile" thread - or would that be toe-curling and embarrassing?

Is there anything else? So want to help you - I'm sure that's a common sentiment from everyone on this thread.

hmc
x

Droile, I'm so sorry - this waiting must be very close to intolerable - though of course you have no choice but to tolerate it. I do hope the pead oncologist comes on board v v soon. I do think that once something is happening, although it will still be frightening and huge and overwhelming, at least you will feel something is happening.
Poor little mite - but I'm glad the seizures aren't actually frightening him.
Thinking of you so much.

If you want a distraction, post on Batters thread about a few days away and tell her all the things you did in york - she's thinking of taking her dd there for a little break.

XXXXXXX

Morning droil

Right so shall we do this time table then? Starting today? I take it you're at home with the boys yeah?
You start in filling in things you HAVE to do and MNetters will fill in any blans with suggestions of things to keep you occupied etc.
I'm CATing you now to get your address anyway so I'll speak to you more on email.
Your in my thoughts, loads - TC xx

Droile,
Just wanted to add my hugs and best wishes. Am lurking more than posting here as I don't think I can add anything more helpful or supportive than some of the wonderful mnetters here but you are in my thoughts.

Droile - Sorry I haven't checked back on this thread sooner.

We were very fortunate with dp, he was diagnosed in June last year after suffering with migraine for 6 months and finally collapsing. From the first scan we knew it was a meningioma - a tumour of the lining of the brain. It was benign (they could tell from the scan) and in an easy to reach place.

It was removed on 18th June, and post op was VERY scary but he was home after 10 days and back at work after 8 weeks. He's now completely recovered, the only side effect is his sense of smell was destroyed in the op.

Re the friends, we didn't experience that but I got dp's phone while he was in hospital and regularly sent out group texts to his friends asking for visitors. I think being asked made it easier for people as, like others have said, they don't whether they should bother you or not. We got lots of visitors at home and in hospital and lots of offers of help which I grasped with both hands!

Thinking of you - I can't imagine how hard it must be to see this happening to your child.

Had a much, much better day today. I had a tentative arrangement to visit a friend, so this afternoon, we drove over there and had a lovely time. We even ate chips on the shore looking out to sea and ds only had one seizure all day. The kids were all occupied searching for creatures so my friend and I could chat, about the hospital, about gossip, work, everything. I think that's what I needed. I just need to chat about everything and anything, to keep my mind focussed.

Thomcat, timetablewise, I have 2 more days which are full up, so Friday is going to be the tester. I'll work on that and get back to you.

Dislocated, asking for visitors sounds as if it worked well. Glad to hear your dp is now so well, it must have been harrowing for you all. Did he have headaches post-op too?

HMC, I'll give some thought to your offers of help, thank you. As for visitors, I'll devise a way to ask 'without asking' (any suggestions welcome) the people I know first and let you know if it works. Maybe I could just send out a roundrobin or email telling people that the limbo period is hell and can they help fill it by dropping in for coffee. (Then I'll have to clean up more - bugger!)
Blu I'm going to find Batters thread now, thanks Spub,
D xxxxxxxxxxx

Can't find batter's thread blu - what's the title and is it in Days Out Recomm?

Oh hurray!!!!!!!!!!!! so, so glad you had such a good day, you all deserved that so much, it sounds great, and only one seizure, fantastic. More of the same please if anyone up there is listening.
So Friday - well if you fancy driving to Pinner, not far from London and very near Harrow/Wembley - then I'm off on Friday, seriously, if you drive, come and spend the day, it would be great. Please.

Damn, if D hadn't been on GoogleEarth playing around we would have been posting at the same time.

Ha ha Thomcat! I used to live at Chesham, end of the Met line from you. I once went to meet someone at Pinner who didn't turn up. Small world!
If I could fly down, I'd come.
xxxxxxxx

so is that a no? Not a possibility then no> Ohhhhhhhhhhhh.
So what will you do on Friday, watch ET in the morning, then have a big arts and crafts painting afternoon?

Oh Droile I've only just seen this. Words fail me. Much love to you all.

Hi Princess.
That's a brilliant idea Thomcat. We haven't had full arty stuff out for ages, although ds2 did do some impromptu painting tonight with dh. ds1 has a party at 3, so we could do some art till then. I've been wanting to copy a painting of that Brazillian? female artist with the one huge eyebrow (up a tree), so I could do a chronic version of that with the boys while they do their masterpieces. Thanks Thomcat.