Anyone else facing severe life limiting illness and wanting to share advice and support along the journey?

[wahwah]

Wasn't sure how to describe my situation, but I have recently found out that it's likely that I have 3-12 months to live (although obviously the medics don't want to be too prescriptive and I do want to be the miracle woman in the papers). Now at this stage I can't bear any sympathy, or getting into any specalist cancer forum, so I wondered if any fellow Mumsnetters were facing the same kind of thing and what sort of preparations they are making or have made.

I have a ds (4) and a dd (1) and a dh and a lot of things to think about in terms of stuff like birthday cards, presents, books from me etc and it would be helpful to know what's important to other people.
If anyone reading this lost their mothers at such young ages and can give me some advice on what was helpful to them, I would be really grateful. We're doing loads of filming and a website for people to post their memories of me, but I'm also thinking about what they would want to know just from me.

I hear you saying you don't want any sympathy, but my heart goes out to you. I'm sorry. Truly sorry.

I have health problems for which the future is also very uncertain, though no actual timescale. And yes, all I can think about is my DD.

I'm writing a lot down, collecting bits and pieces for a 'memory box', taking lots of photos and giving lots of cuddles. Just doing all I can to make the most of every minute I have with her...

Hi, i'll introduce myself, but lurk for the moment if you don't mind. My prognosis is around two years and I also have young children. I can always be found on the tamoxifen thread if I am needed!

Thank you, for responding. Obviously there's a bit of me that doesn't really want anyone else to be in a similar crappy situation, but it's actually really helpful to know that we're facing the same sorts of issues in our own ways - I'll come and lurk, reallywoundup and see how you're doing it over there.

Organichairbrush, I hear you-I've spent more time wrapped up on the sofa with the children just cuddling, than anything else...weirdly it's not all bad when you know absolutely where your priorities lie...

Wahwah and reallywoundup I'm so sorry to hear that you're facing such challenges.

My mum was diagnosed with terminal cancer when I was a child and she was 40. To this day she still doesn't know that I overheard the conversation between herself and the other ladies from the church where she said 'I'll never tell the children, I just want to spend one last Christmas with them'

I've just started cryng now. I knew something was up when all the women from our Catholic church turned up with cakes and presents for us and we were told to leave the room so I listened at the door.

She lost weight she was in and out of hospital for almost 5 years but my mum is now 64 and in reasonably good health for her age.

Nobody can predict the future but I'm a medical secretary and in the letters that I type every day I see 'miracle cases' on a regular basis. My 2 nephews, my brothers 4 year old and my sisters 3 year old are both being tested for muscular dystrophy but I won't believe it. It ain't over till it's over and I wish you both (and anybody else who is dealing with a potentially life-limiting illness) all the luck in the world.

Warmest wishes to you.
x

Thank you for your really kind message. Of course I hope for miracles and I do prepare for the worst, but I'd love a miracle too...

My heart goes out to you, and at the same time, I am very frustrated with the doctor who gave you that limiting lifeline. We do not have "Best Before" or "Use By" dates on us! My father was given 3 months to live after his diagnosis, this was last July.

The drugs have worked and he is still with us and getting better.

I can only give you advice that my mother has had to take on board which I feel can be summarised in the sentence: "Trust in God but lock your car!". So make the will preparations, along with handing over power of attourney to your DH.

Best of luck Please come back and let us know how you are doing.

Thank you, Flook Crow and apologies, I haven't checked this thread in a while.

I should point out that I was the one who asked for some sort of time frame from tje medics, which they really didn't want to give, just said my take on it seemed about right and then gave me some stats, but pointed out that nothing was set in stone !

I hope that I live a long time, but I make plans as if I'm not. There's so much I need to do that I think it's the only way. Every day feels a bit like a bonus as when it first happened I didn't think I'd leave hospital, let alone enjoy a warm spring in the garden with my children and husband.

can i join this please, im mandy im 42 and ive got cancer, ive got 7 children and my youngest is nearly 2 and hes disabled,
no point in sympathy whats here is here, one minute im sad next in damn angry but nothing helps....
there planning to cut my tongue out soon in the hope thats done then treatment....
nothing is certain with cancer....all we have is hope, i cling onto the fact this will work it has to...
il be here with you wahwah, lets hold hands together x

Hi Mandy/Disneystar, I am sorry to hear your news. I
am also sorry that I haven't checked this
thread regularly, I think I thought I was the only
one on Mumsnet and I hoped for everyone else's sake
that I was.

I find it so hard, I accept what is happening and I
am also so desperately sad and angry about
it that some days I go from being the nicest woman in the world to a banshee.

I imagine that like me you think about your children
all the time and how unfair it is that we have to
leave them behind. It hurts me so much to even write that. That's the worst thing for me in all of this.

I've had some relatively good news about treatment / palliative options and to be honest this slight hope has been really hard to bear. I just can't bring myself
to hope too much for a few months more, it was almost easier when I just had a few weeks. I'm
not complaining, but it all adds to the turmoil
for me and mine.

How are you doing now and what is this operation? Do you have good people around you to help out and share the burden?
Not that it's easy for them to 'get' what facing your death is like, but practical support is
good.

Hi again. I won't offer sympathy, but I do understand why it doesn't help. And it's lovely to hear you're still with us.

I'm sitting here waiting for a phone call WRT treatment etc... still don't really feel as though I have any particular advice. Just cuddling, cuddling DD...

I think that's the thing, Organichairbrush, all we can do is enjoy our children for as long as we can. Although some days I feel like stressed out shouty mummy and I
don't think the kids enjoy me very much...

When might you have a clearer idea about things, or is complicated?

It's complicated. The consultant has promised to phone me, but seems to be glued to the politics busy with emergergencies, and is always very helpful. Probably best not to start speculating.

wahwah, how are your kids and DH getting on? How are you coping?

Hello!
We're all FINE! You know the time when you all pretend life is going on as normal because frankly you're sick of dying? Well, we've been there for a bit, but the need to make decisions ( and hair loss) has underlined that this is just a nice little fantasy.

Ds is trying to understand dying and doing really well for a 4 year old and dd is still a bit clingy. Dh is less angry about it all and I'm just trying to live! It's bloody hard...but for the moment I'm fairly strong so there's always a blessing somewhere-could be a lot worse.

The weirdest thing is how much of who I
thought I am was bound up with work and as
I'm not working, there's this big gap in my day and tbh in my identity. Very strange. I haven't had much time to adjust to this, perhaps that's a good thing too..

Anyway, I'm probably happier than I sound, but this dying business does get boring.

I hope your consultant gets back to you soon. I think it can be horrible just waiting for the next
thing. How are your family?

Sorry about the delay. Still no news, so I'll reply anyway.

Family are OK. DH is the world's greatest optimist, and DD is only 6 months old and just delightful. I'm just so glad I wasn't diagnosed until after she as conceived.

What sort of things are you filming? It's such a lovely idea (though personally I can't stand the sight of myself on camera )...

Hi there, ds is up at a stupid hour, so I have time to be posting!

Sorry to hear the Consultant still hasn't got back to you, I'm sti wrestling with making a 'choice' about what next.

Anyway, the filming is basically Dh just taking a camera everywhere and recording a few minutes here and there of the children and me, so they get to se me doing normal things with tjhem. I also intend to film my parents talking about me, so they get a sense of tje child I was...

I think when most of us film, we focus mostly on tje children, but in these circumstances it should be mostly on us parents, as that's what they'll want to see in future I imagine.

It's nice that your Dh is an optimist, we all need someone hopeful around us.

Hopeful is good, but 'out there' is too much for me, Ive banned any talk of 'miracles' or weird diets in my group of family and friends- except for my oldest friend who has sent me some fairly bonkers stuff!

I know what you mean about not knowing whle you were pregnant-I think for me it would have cast a cloud over it all had I known. You say your Dd is only 6 months- that's such a wonderful age and so young- I hope both of you do have many years together.

Take care.

I couldn't read this without saying how sorry I am and how incredibly brave you sound.

You mentioned things that they would want to know just from you - I know that when first becoming pregnant it was a time that I wanted to talk to my Mum about how she found her pregnancies, just for advice and reassurance. Maybe that could be a letter for your dd for the future ...

Much love x

Thank you cowebsontheceiling, that's really helpful. Sorry for not replying on this thread earlier, but I decided to take a bit of a break from 'dying' and ignore it for a bit!!! Back to facing reality again. I spoke to my sister about your comment and we were surprised that we hadn't thought how the detail here would be useful for my Dd in her own pregnancy-I was just going to write a short bit about this to her, but this is what she'll want to know, Im sure...