Thats terrible news Liv. I can't even imagine how you must feel. Its really upset me, and I'm practically a stranger.
But again, cancer is so unpredictable. 2 years might turn into 10, you never know.
Try and focus on the positives babe, making memories like you said.
Have you got any holidays booked or anything to look forward to?
Get yaself onto a kick bag or something and just kick and punch the sh*t out of it darling, whilst crying your eyes out if need be. It will help to let some of the anger out. Training really helped me when my mum died.
I also think its important to show your mum that you will be alright when shes gone. Not by hiding how sad you feel, but practical things, ask her to teach you how to cook, or something. And most of all help keep her as busy as possible.
Look at photo albums together and remember the good times as a family yeah?
I'm chocker with uni and training at the moment so I'm not on here as much, but I'll keep an eye on this thread and am here if you need me ok?
We haven't got any holidays or anything booked at the moment, but my mum wants lots of mini holidays so hopefully we can sort something when my brother is home too. Just need to have lots of good times, even if it's just at home doing normal stuff. And practical things, like all the cooking etc sounds like a good idea.
I have a punchbag at uni so that is good, something to focus on when I'm by myself.
At least they are not giving up. In a few months they can try chemotherapy again, and it worked before it can work again. And there's something called cyberknife that they can do in London etc, it's more targetted radiotherapy so maybe that will move it from the artery.
Its good that you (and the doctors) are still looking at options.
That means they haven't given up.
With my boyfriends nan they just said theres nothing they can do except palliative care, so they must think more chemo and stuff might help or they wouldn't put your mum through it.
Lots of mini holidays sound good.
If you've never been, and everyone has the energy for a bit of walking the Lake District is beautiful and inspiring and perfect for a long weekend away. Plus its this country so not too expensive.
I have a feeling you might be putting your positive head on again though babe and pretending to be fine. Don't worry about ranting or admitting how hard it is on here. We are here to listen.
We went to the Lake District years and years ago, but not for a long time. My mum would like that though, and places in this country are good because my mum's a bit worried about getting travel insurance etc if she has to go abroad.
I am pretending to be fine a bit. I'm kind of worried about coming across like I'm just being really negative about everything, but I'm just scared. And sad. And kind of numb, like I can't focus properly on stuff, I can't really take much in at the moment if that makes any sense.
I adore the Lake District.
We live about an hour and a half away, and my nan has a house there which I get to use for free so me and my boyf go a few times a year with the dogs. Its perfect.
its fine to be scared and sad and everything.
everyone gets overwhelmed sometimes.
Just keep taking one day at a time.
Thinking about the future is too scary for me most days anyway.
My family are doing okish - I think it's slowly starting to sink in and get back to 'normal' again, the new normal though, the normal where we talk a lot about cancer and treatments and death and life afterwards, and about funerals etc.
My mum is sad still (obviously!), she has cried a bit today. It's just because of Christmas I think. We'd planned to go up to my aunt's for Christmas and spend it all together as a family, but now there's a couple of people who are going that we just don't really want to spend Christmas with (not because of anything bad, just that we don't know them really, if that makes sense - like the dad of my uncle's son's fiance kinda thing, who we've never met) and we just want some family time.
And I guess there is that fear that it might be the last Christmas. We're very lucky I guess that we can plan the last Christmas and prepare for it. It's just we don't know when it will be. I mean, 2 years from diagnosis would be March 2012, but then, it's unlikely to be exactly two years, that would be a bit odd. It might be a lot more. But it might be less. And even if it was 2 years, they think the last few months won't be so 'usable', so we just don't know. And my mum is scared of it being her last Christmas with us - I heard her on the phone earlier crying because she doesn't know what the last presents she get us will be (we wouldn't care anyway, but it's just all the small things that my mum's upset about atm I guess).
For the last Christmas, we just want to be together, just the four of us, in our own house. And although we will probably (almost definitely) have more Christmases, there is that small chance. And I feel selfish a bit for it, because obviously the rest of our family want to be with my mum and all together as well. But we just don't know how long, it's such an unpredictable illness. And we just want to spend the last Christmas together, and my mum's said to my aunt that we're not going to go up for Christmas, but now we're all feeling guilty. >.< Even though we could still come up for Christmas Eve or Boxing Day and my family are coming down to our area for NYE anyway.
So yeah. It's just the small things. Christmas afterwards is a sad thought at the moment. That probably sounds stupid though because you can't look that far ahead, right?
You can always have an extended christmas and see the rest of the family in that gap between christmas and new year.
This year my aunty is away for Christmas so we are having a second christmas (with Christmas dinner and everything) in January. You can do something like that.
I don't even remember what my mum got me the last Christmas. Or even what we did. Your situation is different because you know it might be the last one, so you have the opportunity to plan everything, but actually you might sometimes worry too much about all the "last" things. Its only natural I suppose but don't forget that you have all the other 20 odd Christmases that your mum has been part of as well. They are still just as special as this one.
Once again, I don't really have anything useful to say but I'm listening and here if you want to rant or anything :)
All I can say is that I'm worried about you Liv. Please don't stop eating, you don't need me to tell you that going back down that route isn't a good idea. It will only lead to more stress, which you do not need.
Take care of yourself, and keep talking x
Thank-you for the replies. And I hope you are both ok. I know all I ever seem to do here is moan, but I do appreciate the support so much. x
That is true about the 'extended Christmas'. We could go up to them and have a second Christmas, so that we're still seeing everyone. Or we'll just end up going up there to make everyone happy heh. I dunno, it won't make a difference where we are probably really anyway - and like you said, we've had lots of great Christmases which are just as important. There's just no right or wrong answers about what to do I guess. Ah well, lots of time to decide.
I haven't stopped eating yet. I have a plan though, and not eating is a part of that plan. I don't know if it will work. But I want to shut down. Not with my family, with them I will be fine and happy and ok and normal, and usually that is really how I feel. On Saturday night my mum was sad and we were talking about Christmas and she said 'Are you really as ok with all this as you seem?'. So I am fine at home.
But apart from that, maybe shut down. But then, it won't help. It will make things worse. And my mum needs to know that we are ok, and that we will be ok. And we have to all be strong now, we have to be positive, because it could still be a long time.
Be careful darling.
I can see the temptation.
I struggle with eating sometimes myself, and I can really truly see the temptation, and maybe you think that by shutting down, eventually everyone will see that you are actually not as ok as you seem?
But you know its not healthy. Or good. And it will make things worse in the long run sweetheart.
You don't have to be strong all the time, and you don't have to be positive either. But you do need to eat and keep yourself healthy.
Its fine to admit to your mum, or someone else in the family that you are finding it hard. Your mum will be worried about you, but she will be more worried if you aren't telling her how you feel and pretending to be ok. Mothers have the knack of knowing when things aren't right.
Take care babes.
PM me if need be, and keep talking here.
Worried about you.
Can I just ask what that Plan is? :/ It doesn't sound too good, to be honest. And I do hope that shutting down doesn't mean what I think it means. You know that there's much better coping methods than any form of self-harm (which not eating is), even though self-harm can feel appealing at times.
I know the way things are as they stand now are quite gloom, but on the bright side there is still a possibility it could be even longer than those 18 months, though I understand about preparing for the worst and making the best of your time now, and that includes making the best of Christmas and other big events (holidays, etc) to come.
But you need to be coping to enjoy these events too, and I'm sure you realise that and want to remain strong, but do you have any healthier coping mechanisms rather than this plan? Like, for example, going on those late night walks - they're helpful at getting out and keeping calm a bit, provided you avoid the creeps and of course putting yourself at any other risk.
I'm sorry I don't have any better advice, but I do hope you're gonna be okay. xxx
Sorry, I don't mean to worry anyone. I will probably not do the not eating plans etc anyway. Sometimes talking/writing about it helps to see things more logically, and then find other ways to cope.
It is true about the shutting down. I am not happy and often I am so good at putting on a happy act now (except at training for some reason, it's all backwards there) and a part of me wants to shut down and then people will realise I am not coping with it that well. Physically/practically I am coping. But not mentally. And since last week I seem to be letting myself fall into a bad place, rather than trying to think more positively like I usually do.
I'm seeing the hospice counsellor on Wednesday, so I can maybe try and talk to him about it. On the whole I am coping. I'm getting uni work done, I'm doing all the things that I need to do, I'm happy with my family. It's just...I can't cope with the thoughts.
Edit: Sorry if I shouldn't be saying this in General Support.
Yeah, speaking to the counsellor is a good idea babe.
Try and be as honest with him as you can.
I know the feeling of being fine on the outside and getting things done, but being really not ok inside.
And I know sometimes its easy to wish you could fall apart or "shut down" and let people see you are not coping.
As well as the counsellor try and speak to your mum about it too.
Or maybe your dad or brother?
They are probably not as ok as they seem either and talking about it might help.
Look for healthy ways of coping.
Training is one.
And writing things down.
And having a really nice hug from someone, even if they don't know why you need it.
I talked to the counsellor a bit. He knows I'm not ok, I think, but I couldn't tell him some of it. But he is working on some of it with me, so that is good. I will try writing some stuff down maybe.
And training. Training is good for something to focus on.
Now the hospital are saying they will do another scan in January. They're telling us not to get our hopes up. But there must be some hope, right? Because otherwise they wouldn't be doing it. They are wondering if a bit of what is showing up on the scans might be scar tissue or something I think, I'm not really sure what exactly. But maybe if it is that means they can try surgery.
My mum says she is not getting her hopes up, she says she is accepting that she will have 18 months. But maybe there is just a small chance they can try surgery? I don't know. They've spent the last few weeks saying they can't do it, then they were saying they'd look again in a year, now this consultant is saying he will do another scan in January. And they're still saying surgery doesn't often change the outcome anyway, that sometimes it can make the tumour spread more.
So yeah. That's positive. So everything's fine. Just being silly.
You are under a lot of stress, and it must be even harder in a way to have all these conflicting treatment options and outcomes going round in your head. And all the uncertaincies.
Of course its positive that they are doing another scan.
Scans are expensive and with NHS cuts etc, they aren't allowed to do them without a good reason. The doctors are doing their job, so try your best to leave them to it and focus instead on having lots of really nice times with your family, and looking after yourself.
It would kind of be easier if they could just tell us for definite. Which is what they did last week. Last week it was a definite no to surgery, 18 months prediction. And now they're saying they'll look again in January. And even though they are saying they don't want us to get our hopes up...well now my hopes are up because otherwise they wouldn't have said it.
My brother is home next weekend, so that will be nice to have the four of us together again.
Stay, strong hun! Have faith that everything will go good. your not being sill or overeacting, your having the same reaction any of us would have if it was happening to any of us.
Much love,
Meg
♫Psycho chick, psycho babe, psycho person, psycho ways, psycho in the car, psycho in the bar, psycho in the far, psycho on the ceiling, psycho on the floor psycho just can't take it any more!!!♫
Earlier my mum cried a bit because she was talking to me a bit, I can't remember about what exactly. I think we were talking about her work colleagues; I used to work at their school for a bit so they know me, and they were asking after me to check how I was apparently. And my mum said that they were saying how brave she's being, but that she doesn't have a choice. And she was saying that the nurses said that she won't be in pain at the end, that she'll be on lots of morphine. And then she cried.
I am falling into a very bad place in my head. I just want to do myself serious harm. I want to just hurt. I still have the plan in my end, the not eating plan. It starts tomorrow and I have to do it, just for a while. But then there's other thoughts. I won't act on them I don't think, because it would be completely contradictory to end things now because then I'd have even less time with my mum. Afterwards though, it's so tempting. I mentioned it to the counsellor, going with my mum. I won't do it obviously because of my dad and my brother. We will need each other more than ever, we will need to get each other through it. And eventually it will be ok. But sometimes it is seeming like a good plan.
And again, this probably shouldn't be in General Support, sorry.
I haven't a lot I can say to help, but I hope that the bad thoughts have shifted. Even if only a little. I know you said that you know you can't act on those thoughts anyway, but sometimes negative thoughts can really cloud our judgement and rationale and make us think and do things we shouldn't do.
so me and my boyf go a few times a year with the dogs. Its perfect.
