My Mum has just been diagnosed with terminal cancer

[sphil]

We found out yesterday that my mum has a huge tumour obstructing her bowel, further tumours elsewhere in the abdomen and secondaries in the liver and lungs. Having an emergency op today and then we'll see the oncologists afterwards. But it doesn't look good. I can't believe it - she's 72 but looks and acts more like someone in her 50s. My Dad is in pieces - they've known each other since they were 17 and 18.

Just want to know what to expect really. I know how bad it is - the drs didn't mince their words.

Thanks Saker.
Mum came out of hospital this morning and is now home. She is such an amazing woman - she told us that she wanted to talk about 'living with cancer' rather than 'dying from cancer' and is being incredibly positive and upbeat. I don't think she's in denial - she's just a very positive person, always has been. I'm in awe - don't think I would be like that. And it's making everyone around her more cheerful too - we had a great afternoon tbh. Strange, that you can laugh and joke even while being so sad. Though my Dad can't manage it - I keep catching him staring off into space and he just looks absolutely lost.

I'm glad your Mum is out of hospital Sphil and that you had a great afternoon.

So sorry to hear this sphil, it must have been a shock to you all, the Mac nurses are Fab, we didn't get offered one but when i phoned our GP he sorted one out for us, our has been fab and we still she her now even thou steve died six months ago, the Mac forums are great, i have lots of books for kids lots aren't any good for our 3 but some of them are SN friendly, if you cantact me i will let you know what i can about book and stuff.
take care of yourself for it is a difficult path you face.

Oh Sphil if there's anything I can do plese do e-mail me- I'm so often over your way these days and can help with bits of stuff if needed I am sure.

I now the system where you live well but don't think she lives there? might be wrong- te big hospital in the county town (don't know if you want your location revealed) used to have a Macmillan Info Centre; can also highly recommend their website as the forums on there are just packed with good, solid advice. Consider asking about a Macmillan Nurse- existence is geographical (and your area didnt used to have one, but its a decade since I worked there almost) but always great if you can get one.

Thinking of you all tonight X

Oh just saw you had a Macmillan- that'll do you well, well done for that.

Love the 'living with cancer' mentality. I'm putting our story here as it might help a bit, if it doesn't, apologies as I don't want to hijack.

My dh is doing that too, his oncologist told him that he's not had anyone get past 4 years with this form of cancer so that's the intial target he's aiming to beat. He's going to the gym every other day as it makes him feel better and helps his symptoms but we refer to him being 'challenged by incurable cancer' rather than being 'terminally ill'. We're not in cloud cuckoo land but it helps our day-to-day living if we have half-full glasses.

I think we're lucky at the moment as he's coping with very aggressive chemo incredibly well, the medical staff are gobsmacked and the (few) positive ones help him enormously. Most of them seem to be waiting for him to feel really lousy, don't get me wrong, they are lovely but he needs boosting up, not encouragement for feeling sorry for himself.

We made a wishlist of things we want to do as a family and are trying to fit them around chemo.

My dad has struggled most with the diagnosis, the natural order has been upset and he's found it hard to talk about it but gradually we're making progress.

Please CAT if you want to ask anything, Kx

That's a lovely post Twink.

All power to your dh.

That is so helpful Twink - my Mum has that sort of attitude to life in general and as far as I can see, so far it hasn't changed! So all power to them both .

OJ - I've already learnt such a lot from your threads about Steve, especially about dealing with death when your children have autism. I may well get back to you about books for the DCs - it's so difficult with DS2 because it seems that people are 'out of sight out of mind' to him, so it's easy to think that he won't be affected when his Nanny dies, but I really don't know if that's the case. I was away for two days over the weekend and he didn't seem to notice at all, but when I came back he pulled me into the sitting room, unzipped my coat and wouldn't stop hugging me. I don't know how he'll react when we go to my parents' house and my Mum's not there. Just go looking for her I suppose - and what on earth do I say to him? He just won't get it. DS1 is easier because he understands everything, but harder because he understands everything, iyswim.

Peachy - my parents are nearer the county town of which you speak than I am. But think she will have to go to Bristol for chemo? They're building a new oncology centre at the county hospital but it won't be finished until May . The Mac nurse I mentioned runs the cancer info centre at the hospital, but we haven't seen her yet - was planning to do so today but then Mum was discharged, so not sure what happens next. Thanks for offer of help - we really must meet up some time. (Dh brought Ds1 to Glasto carnival but only got as far as B and Q roundabout!)

Twink - I've just read a thread which suggests you have Lewes connections. Big coincidence - we moved from there last year!

sphil- I think you could ask for some help from a clinical psychologist about drawing up some sort of social story for ds2 to try and help him understand if you're worried about it. In ds1's case photos have proved to be really helpful in explaining about death - so he talks about my grandmother (who he knew) and our cat (!) who died last year. When he sees photos he studies them really hard and says 'nun nye nun nye' and makes a sleep sign. I think that's at his level but seems to be enough for him to understand. He talks about our cat (using photos) for example but never looks for her. Yet when dh goes away he will use photos to ask for him. It's surprised me but a very simple explanation (in single key words) seems to have worked for him and he does seem to understand the difference.

We used to tell him my grandmother was poorly, and he saw her in bed a lot so the idea of having gone to sleep makes sense to him I think.

My grandfather was very positive when he had terminal cancer and lived a long time. I don't mean to suggest that being positive is all you need to beat cancer, or if you don't live a long time with cancer you just weren't positive enough. I just mean we never really know what will happen.

I know - every time I write that my mum is positive I remember what John Diamond used to write in his Guardian column about being sick and tired of everyone going on about positivity all the time! But very very selfishly, it helps us that she's so upbeat .

Maybe a simple social story will help DS2 to understand, though he doesn't have anything like the connection with photos of your DS1. I told the SENCO this morning and she suggested that the autism outreach teacher might be a good person to contact. And I also thought of Growing Minds- we're finishing with them after Christmas, but I might ask if I can buy in a few sessions with Kaitryn. Will be good for me too.

B Blimey SShil-Iwatched it at B&Q roundabout. Damanations!

There's a good chance I have met the Mac Nurse then, I met all the original postholders; hope so, as they were really good. The GP ? consultant can also refer you, just ask (also, I dont know what their finances are but be aware of the grants service too- handy for heating bills parking etc)

this has the macmillan info line number on

Macmillan will be there for your dad (and you also) which sounds like it will be a bonus. Also i dont now whether you will want to look into hospices if it comes to that, but I know your local one is good if it is ever needed, my friend left us there and she chose to because its where she felt most comfortable and secure.

Bristol is the norm for treatment, crap isn't it? should have been sorted years ago

We will meet up, we'll manage it. I thought we'd be back there by next year but DS3's sn place is going through now so another hold up.

Twink what a fantastic post. Your dh and yourselves sounds like truly great people to be around. My bet is the Doctors think he isn't accepting the diagnosis but clearly he does and I wish you luck in this battle.

sphil, i do have a social story about someone dying, i didn't use it but it looks useful. i can send it you if you contact me, i am not set up to send CAT at the moment.

'John Diamond used to write in his Guardian column about being sick and tired of everyone going on about positivity all the time'

Positivity is great but I remeber friend I mentioned below- she was 45 when we lost her to breast cancer and she said to me after yet another comment about 'staying positive' that she didn't want to, she wanted to scream at yell at the injustice and tell the worl to F off, but she felt that if she did there'd be a line of people telling her she was wrong and should think differently; but why should she?

sphil, so sorry. My mum was given 3 weeks when they finally agreed that she was right and her symptoms were serious. she was 60 and mum and dad had only every known each other since 17 too. Somehow the doctors were right about the weeks, and so all I can say is you never give up hope but at the same time don't waste time chasing round for miracle cures as some family member did. Spend as much time as you can whenever you can now. I didn't let my little ones see my mum after she started to look ill as I wanted them to remember her positively and I'm glad I didn't, it took a long time to get the last few weeks to fade and get her lovely face back into the front of my mind. We are all different but that's what I had to do. Macmillian nurses are excellent though we didn't have much contact with them it was all so quick. Hope for you and yours you have much more time because hope can't fade while your mum is here and you just never know. Sorry think I better end not making things better just really want you to know someone else is thinking of you.

Kaitryn sounds a really good idea. Steven may have some ideas on explaining it to ds2 as well. They must have some experience of something similar with all their years of practice.

I think if the person with cancer doesn't want to be positive that's fine, but if they do and that's the way they want to live with it/through it then you can take that at face value. I don't think you should ever tell someone to be positive, but if they already are then you don't have to apologise for that!

thats very true, it just seemed to be a get-out-quick phrase from peiople: oh errr i'm so sorry errr stat positive ye? >

My Mum said today ' I'm not putting it on you know. This is how I really feel' .

Sorry I haven't had time to reply to all your lovely posts - just back from two days in hospital with DS2 who broke his leg on Tuesday! It never rains eh...

If you want to know the full story see my thread in SN. Need some advice there about how to keep a six year old with severe autism from weight bearing on his right leg for six weeks

Oh Sphil.....

DS2 broke his leg?
Your Mum is amazing....

They called me into school to say that he'd fallen and they weren't sure what he'd done (neither of his normal TAs were in that day). Noone saw him fall but apparently another girl fell with him (and I'm thinking, possibly ON him). Am a bit cross as the playground was icy and this particular girl does pull him around a bit, which is usually OK, but not when it's slippery, as his balance isn't quite as good as his peers'. We're not going to make an official complaint (as we've no idea what actually happened) but I will have a word with the SENCO about keeping a close eye on him and not letting the other kids tow him about so much that he's wrong footed. DH's sister is a physio and she's pretty sure that this sort of fracture can't just be sustained by a simple fall, but would have to be a twist with added weight behind it.

Btw OJ - how do I contact you? Don't have your email.

I'm sorry to read this sphil.

Sphil - I'm so so sorry that you are all going through this. Can second Twink's recommedation for Winston's Wish for the dc's. I'm crap at links but if you google you will find them. A relative was recently diagnosed with terminal cancer and I had to explain it to the dcs - the site was INCREDIBLY useful, very age appropriate (and actually helped me sort out a few feelings of my own).

When you can bear it look at the website - I know it's still early days but it will really help you through the process with the dcs.

Once again, very sorry.

Hadn't realised that when I cut & pasted from the other thread that the links wouldn't be 'live'

Here's Winston's Wish and Cancerbackup booklets

[Hijacks for a moment, Hi Scummy, long time no see, how the devil are you?]