can I just talk here ... feeling very down ...

[wishingchair]

You may/may not know but last year dh got diagnosed with a brain tumour. We were told it could be high grade (biopsy was inconclusive) and therefore had 2 yrs max. He had aggressive treatment and it responded well ... shrunk to fraction of it's size ... this puts him more firmly (but still tentatively) in the 5-10 year category. It can't be removed by surgery. The chemo ended at the end of last year. We're currently waiting for the results of his last MRI.

I know the prognosis is better than it was. I know others on here are dealing with worse. But it's still f*ing SHIT!!!! I've got 2 DCs (5 yrs and 18 months) and there isn't a day (hour) that goes by where am not sitting here imagining our life ahead without him, and what their life will be like. I just wanted them to have a stable normal childhood and now they might/will have the rug pulled from under them. How will they cope? Will this send them on the path of depression/self-harm/drink/drugs etc etc. I'm so exhausted with all of this. If this had to happen to him, why couldn't it happen in 20 years time?? And I'm getting paranoid about going places on my own in case something happens to me and then they'd be orphans . I have to travel with work and have so far put it off but I won't be able to forever, nor should I as I know I'm being irrational and I don't want this fear to get out of control.

Bloody hell I sound like a basket case but I work so hard to keep myself from falling apart and the stress of waiting for the scan results (which we'll have again in another couple of months, and again and again) is so hideous. Sorry for going on but I'm going a bit mad and DH is only barely keeping it together this week and he doesn't need me adding to the pressure on him. Thx for listening

How awful for you, got nothing helpful to say but you must be struggling to keep it together and this is a good place to get things off you chest. Hope the scan results are good.

My sympathies wishing chair. I'm lucky enough to not have been in similiar situation, but on a practical level would it help even in a minor way, to have a plan for the exceedingly unlikely scenario that something were to happen to you? ie. discuss with family/friends who would take your children on? and update your will to reflect this. I know this is only scratching the surface of what you're having to deal with but wonder if this might help allay some fears.

Wishing you strength.

Gosh, I'm so sorry you have having such an awful time.

I didn't want your post to go unnoticed. I hope I'm not taking liberties in saying that other members, such as martianbishop or onlyjoking may be able to help.

Please keep posting.

Thanks dilbertina ... our wills are all up to date and that is all in there. I know they'd be well loved and cared for but it's not the same is it. I just never wanted any of this for them (obviously!!)

I think, as parents, it's our biggest fear - primarily that something will happen to our kids, but close on its heels is that something might happen to us. And you're facing it. I think what you are feeling is perfectly understandable - and you're right, it is absolutely shit.

On a vaguely positive note, I don't think it necessarily follows that if children lose a parent they end up in a spiral of destruction (you know this - but I can understand why your thoughts are taking you in this direction). It's only anecdotal but my cousins lost their father (they were 5 and 3) and one is now a music teacher (got a 1st from Oxford) and the other has just finished his PhD and is working in medical research.

I wonder if it would be helpful to talk to other people who have been through/are facing similar situations - it might help to know other people are as angry and afraid as you are. Are you in touch with any of the cancer charities?

I wish I could say something that would help - I can't, it's awful and it's not fair and you must be so scared - and your dh must be too But, fwiw, you don't sound like a basket case - you sound absolutely normal.

Thanks sorenlorensen (love the name) it really does help to hear of people who go through something like this and come out the other side, that aren't fictional characters like Pippi Longstocking ... I know things are bad if I start to think "well Pippi seems ok" . I can rationalise it in my head and think that life and growing up is hard full stop and this would obviously add to it, or maybe give you something to hang the teen angst on to, and it'll be down to how the rest of us deal with the grief and help them deal with theirs. But then the demons get in to my head and mess it all up again!

80% of the time we are positive, strong and hopeful that he's going to be one of the people that beats the statistics. But then, at times like this when we have to face up to it, it's hard. It probably would help to talk to others, but what can they say? They can't make it better ...

No, they can't - that's the crux of it, isn't it? You can talk, and people can empathise and sympathise...but in the end, it's you who's living it.

80% of the time sounds pretty good going to me I guess the rest of the time you just have to muddle through as best you can and accept that you would be bloody weird if you could face all this, all the time, with equanimity.

I hope the forthcoming scans bring some good news.

You don't sound like a basket case at all- just someone who is trying to cope with so much. No people can't make it better or maybe they can't even fully understand the turmoil you are in but perhaps they might just be there to listen - so you can unburden yourself of these worries from time to time. I can understand not wanting to travel away from your children so keep putting it off if that helps you feel better- at least until you can.
Do you have friends you can talk to?
Keep posting here- its a great place to let it all out.
Good luck with scan results xxx

you dont sounds mad at all. you sound amazingly strong.

no advice, but thinking of you.

cx

wishing chair, what a horrible situation for you, I really wish you well. Its very hard when people say 'don't give up hope'. My nephew was really ill, he was transferred to the children's hospital and we all went to say our goodbyes. He had pneumonia, septacaemia and another illness on top. There were pictures and letters in the waiting room saying 'don't give up hope' which made me angry as I thought 'we don't have any so don't say it will be ok - it won't'. Two years later he is still here. I suppose I'm just saying, well I don't quite know what I'm saying but I just thought you might like to hear this . My nephew will never be 'cured' but he's still here at the moment and that's what matters.

You sound like an amazing person. I also have a couple of friends who lost a parent when they were under 12 and they have grown up to be caring, kind and lovely human beings.

Sorry, no advice as can't begin to imagine how you're feeling.

You are a very brave woman and I'm sure your dc's will grow up to be happy, contented adults with you as their mum.

Sending you positive thoughts.
x

Hi Wishingchair,

I also don't really know what to say but wanted you to know that I'm thinking of you.

Lots of love to you all, BL x

Thanks everyone (and sorry to hear about your nephew mankymanger but you are right, he's here now and that's fantastic). I have friends and family I can talk to and do talk to but it's often much harder to talk face to face than it is on here.

Life eh. x

hi wishing chair, not sure if you are still on this thread but just as an aside, my brother has set up a blog for my nephew with what he's up to, his newspaper cuttings, (he's famous!) etc as he thought it would be nice to show his siblings when they are older.
joe-angelmans.spaces.live.com/

hope that works. All the best.

There's no reason why your dcs should come croppers when they are older (substance abuse etc). If you are a close loving family and support each other through whatever you have to face, they will manage through it too.

Have you seenwww.winstonswish.org.uk/default.asp? Click on Serious Illness.

I have a friend in this position at the moment, though she is the one who is ill. My heart goes out to you.