DS has brain tumour - update

[Clarinet60]

We went to Alder Hey yesterday and they were very efficient in terms of ordering a second scan for this Friday, etc, but we are back to square one in terms of whether/when a biopsy will be done, because the person we saw wants to start all over again and let his own team decide. This is worrying, because the oncologist at Manchester said ds needs a biopsy - I just hope the new team agrees. Also, we were wrapped over the knuckles for changing teams because they are all good friends together. I lost a lot of sleep last night fuming about the injustice of that, because the Manchester team lost letters, ignored requests for blood test results and generally had a 'some time any time' attitude that didn't put ds's welfare first, etc etc. Mustn't rant, this is supposed to be an update! So, scan on Friday (to see if it's grown) after that, who knows?

Hi Droile. I just wanted to add myself to the list of people offering help. I'm in Norfolk so probably am too far away to do anything practical, but as others have said, if you want a break away from home we have a large spare room you can make use of any time.

My parents live in Warrington about 2 mins off the M62 so if you ever need anywhere near(ish) to Alder Hey to stay, they would be pleased to have you.

If there's anything else you can think of just ask.

Thanks, that's kind.

Droile, just caught up with this thread, and really can only say that I'm thinking of you and your family.

Glad dh is starting to thaw. Hope that will continue. Must be so hard for you to support each other when you're both dealing with the shock of this in your own different ways, I'm guessing.

Good morning Droile. Any word from the Macmillan nurse yet?
How are you managing with the day-to-day stuff? getting through it?(cooking, school runs, etc etc?)
Thinking of you.

Yes, getting through it ok. No word from MacMillan nurse yet, was going to ring her today but didn't get chance so will try tomorrow.

Do you need any backup with ringing, Droile? I will be at my desk all day.

Thanks MI, but I'm going to do it in the morning and make it my mission. I'll let you know if I don't succeed.
xx

thinking of you, droile.
xx

Thinking of you here, too
xx

Message withdrawn

Hope you manage to get through to the MacMillan nurse this morning Droile. They were very kind ans supportive when my family had reason to be in contact with them. x

droile

have just found this thread again and have to say I am so sorry to hear this news. I wish you and your family all the best over the coming challenges and re-iterate everything that has been said before about letting us know if you need anything, anything at all.

Hope the macmillan nurse helps somehow

love and best wishes, MP X

droile - so sorry to hear this bad news about your son. I live in Central Liverpool - so please CAT me if there is anything at all I could do practically to help you out.

I don't know if you are aware but there seem to be a few charities (with a helpline) in the UK that provide support to sufferers/families of those with Brain Tumours -

www.braintumouruk.org.uk/aboutus05-BTManifesto.htmthis

Did you get through Droile?

No, I left a message, still waiting for them to ring me back.

Thanks for the link, mummy27.

A bit of coherence has crept back. It's funny how you think that when something like this happens, at least it will eclipse all the other worrying little niggles in your life and put things into perspective - but it doesn't. The other worries seem to be magnified, perhaps because the brain focuses on them as a safety mechanism.
Just a thought.
xxxx

You've been in my thoughts Droile. How's dh now? And ds1 too?

I am sure they will be of great help when you do finally get hold of them Droile, but sorry you are having to wait.
Very different circumstances I know but I was alternately distressed and enraged when I encountered a delay in accessing the Bereavement Midwife I was told could help me. As soon as I made first contact it was as though a thorn had been taken from my side, and she was an instant and constant help to me thereafter.
What are your plans for the weekend? It has finally stopped raining here in London.
xxx

Hi Droile. That's a good point about everyday niggles. I do think stress and anxiety can exacerbate everything really. Hope your weekend goes well for all of you. How's dh doing? Hope you're managing to keep communication lines a bit open if at all possible. Can so imagine that it would be all too easy for each of you to retreat into your own worries and sadness. Have you been able to speak to extended family about ds's tumour yet?

Feeling a bit better today. I think I needed to go down to rock bottom for a while before I could come up.
DS just answered the phone to my friend while I was upstairs. He told her to 'do it in your pants.' pml for ages.

Scummy, & Potty, dh is so-so. We've spoken to the family about the tumour, but just for the latest news, that's all.
Glad you found them a help. Marina. I'm happy to wait till Monday for the phone call.

lol at ds saying that to your friend, droile! And what you said about rock bottom being an essential prerequisite to feeling a bit better makes sense. Hope this weekend is treating you all well.

How are you Droile? Did you get the phone call yesterday? Just wanted to say I'm still thinking of you really.
xx

Me too.
Nothing can happen sooner than it can happen (if you see what I mean) but I suppose there will be a stage where you get back to living life with DS as absolutely normal in the foreground, having found a place for the unpleasant, scary and unthinkable stuff a little bit further back behind the scenes.
He is hilarious! Whatever was the person on the phone saying to him?

Always thinking of you.

LOL at your ds and your friend...I wonder if she was asking for a wee word with mummy?
As ever, thinking of you and hoping that Macmillan call comes soon.
You, dh and the dss are in my thoughts very often Droile. XXX

How's this last few days been Droile? Hope things are going well and moving forwards without too much strain for you all.