Incurable cancer in my 40's AMA

[BodysBroken]

I'm a 43 year old mum of 2 with incurable breast cancer.

I'm very comfortable speaking openly about it and thought this may be helpful for others with similar diagnoses, friends and family supporting loved ones through it, or anyone who's just curious.

I'm not looking for sympathy, no question is silly and I don't take offence easily.

I'm a regular user but have name changed as I'm sure I'll be recognised.

Me too. Diagnosed incurable de novo since 2018 aged 42. Almost 6yrs into this cancer dance and yet so many people have no idea it IS possible to live a life with cancer.

I write about it a lot to help spread awareness.

Good luck to you Op. I hope you have all the support you need.

Thank you I hope you're doing as well as you can. Breast too? 6 years is good - apparently if you get to the 5 year mark you've a good chance of getting a lot longer. Almost 3 years for me, quality of life very up and down so far.

I'm sorry you're having to go through this (and apologies for being sympathetic!).

A friend here in Portugal started with BC some years ago, gradually developed secondaries everywhere from brain to liver but is now essentially cancer free - she is the miracle of the entire Portuguese oncology department. I have no idea if talking to her would be of any benefit to you but I'd be happy to put you in touch.

What am I supposed to say to relatives with terminal cancer? I can’t really say “how are you” because we both know she’s very sick.

do you want people to keep asking you how you are? what is a helpful line of conversation?

Thank you @BodysBroken it's been a journey here too. Cancer stops you of so much & nobody has a clue. I know I didn't until I was dropped right in the deep end.

The worst part is having DC of an age where I doubt they remember much before it.

I have metastatic TNBC which unfortunately reduces my options but I've been relatively lucky so far, for which I'm very grateful.

Sadly, if past experience is something to go by, we might just sit back and wait for the grief tourists to show up and recommend

Turmeric
CBD oil
Yoga
Positive thinking
Not eating sugar
Some trial in deepest South America run by a woman who was riddled and is now cancer free...........

I’m very sorry OP.

I know this will vary for everyone but like a PP, it would be helpful to know how much to mention your illness, not initially but as time goes on. Is it thoughtless not to mention it as it’s obviously such a big thing? Or is it better not to keep bringing it up and to have more “normal” conversations?

Is there anything that really annoys you eg people complaining about their sore knee when you have cancer?

@Pillarsofsalt something like the following is always appreciated:

'Just checking in, no need to reply if you don't feel up to it, but please know you're in my thoughts'

Thank you! Yes that would be great please.

Whilst there's no miracle cure once it's spread and there doesn't always seem to be any rhyme or reason to why some of us die very quickly whilst others live many years with no active disease, there are so many treatments out there now, as well as complementary therapies and lifestyle factors that cam help, it's really important to keep up to date and advocate for ourselves. I'd be very interested to speak to your friend and find out what treatments and care she's had.

@BodysBroken we play cancer bingo quite a lot too

You don't look sick
But you look really well
How long have you got
My aunty's, best friends', daughter's, postman's, dog walker had that and she died within three months......

And my personal favourite - oh I had a mark on my leg investigated for cancer and thank goodness it wasn't. It's the closest thing to cancer though so I know EXACTLY how you feel......

What's the best thing friends can do to support you?

What do you wish you could say to people?

I wish you hope and happiness OP and all the love in the world

Ask if there's anything you can help with, or if close enough, just do it (for example, just wash up/tidy kitchen) .

I'm happy to be asked how I am. Obviously I will always be ill, but the day to day varies a lot. Right now I'm tired with a bit of back pain Some days I'm in severe pain, absolutely floored with fatigue, or crippled with panic. Other days I honestly feel absolutely fine! So do ask.

I'm happy to talk about it, or not. I'm conscious of not letting it dominate though. Imlme, I want to talk about other stuff, and hear about my friends' and families lives too.

I have had friends reluctant to share their good news when I'm having a tough time, and conversely not want to moan about their own problems because they feel I've got it worse I've reiterated to everyone that they shouldn't be afraid to share their own ups and downs, it's important to me to be as involved and as normal as possible. I'm perfectly capable of sharing in others' joy. And someone's work, money, relationship worries or whatever don't cease to be important becasue I've got cancer.

I would add though that when I am hsving a particularly hard time, specific offers of help (can I bring you a meal? Would you like me to take the kids out this afternoon? Do you fancy Facetiming?) are very much appreciated and easier to take up than a more general "let me know if I can help".

So sorry to hear that your cancer is stage 4. How did you discover that you had it? Did you have a lot of symptoms? Did you find out it was stage 4 on the initial diagnosis or were you treated and then it came back? How were you able to process that it was stage 4? Do you have children and if so how old are they? If you have a partner have they been supportive? Sorry for the barrage of questions.

I think I've covered the first part now, personally I'm happy to be asked as day to day it varies a lot, but I'll usually soon move the conversation onto something else as I don't want my illness totally dominate.

I don't get annoyed by other people's worries and moans, even if they are trivial in comparison. I'd be more upset id I thought people' weren't being open with me, or overthinking whst they can and can't say.

The one thing that does annoy me though is people moaning about getting older. Not the very real challenges that can come with old age of course, but the attitude that slowing down a bit and getting lines and grey hairs is the worst thing in the world. When for me, the chance to become an old lady is the ultimate dream

Thanks for the queatuons, I'll come back to this later.

Do you have a prognosis/time frame ?
Have you found that when people see you it is all that they ask about?
Do all your friends & family know or is there some people you haven't told ?
Do people treat you differently?

Sorry for all the questions, i'm going through diagnosis for what may be a very life limiting illness & have been considering these

Thank you so much for these replies. My relative lives on the other side of the world so not much I can practically do for her. Wishing you all strength and peace x

What about finances and work? How are you coping with that potential complexity?

I actually love being told I look well - I make more effort with my appearance than I did previously as I really fear looking ill. Silly as it sounds in the scheme of things. But styling my hair, getting my nails done, putting a dress on, they're little things I can do for me, to keep a bit of control.

I do have an acquaintance who loves to tell me about everyone she knows who's died of cancer. Same woman positively revelled in telling me about cat murders when ours went missing too. She gets a wide berth!

@BodysBroken , me too - I refuse to go in for chemo looking like shit. I'm one of the youngest in the units and, because I've been going for >5 years, I know the staff very well. They use me and my ability to chat to help relax other patients, and by looking fairly decent, I think that helps somehow. If I rock up looking like a bag of crap, the staff know there's something up!

Folk like that are funny, aren't they? It's as if your diagnosis gives them permission to ask anything and have an opinion on it. I had a very public-facing role at the beginning and would be a millionaire if I had £1 for every insincere, head-tilted, 'and how are you' inquiry I had—you could almost feel the relief that it was happening to me and not them. A natural reaction - fair enough.

Fortunately, I'm thick enough skinned, and due to my lack of opportunity to go through this privately, I've used it to spread awareness and understanding. Having terminal cancer at 42 with three young children is indeed shit, BUT if it helps one person become more cancer aware, to ensure they have critical illness cover, and to know how to be their own best advocate, then I'll be delighted.

Thank you so much.

I would say check in every now and then. Ask questions if you have any. Continue to invite me out but unserstand that sometimes I will feel like shite and need to cancel last minute. When things are bad, offer practical help if you're in a position to. A meal, childcare, a phonecall or visit are very much appreciated.

But above all, be normal,. Don't be afraid to share what's going on in your own life or feel guilty about your own worries.

I've been pleasantly surprisedbat the sensitive and thoughtful questions so far!

I did join an excercise class once where the instructor to stop my 'toxic' treatment and cure myself with exercise and clean food. Needless to say I never went back!

Yes TNBC is the more challenging type to treat, I'm pleased to hear you're doing well so far. and I hope that continues for a long time to come. In a way I feel 'lucky' to have ER+ as that has the most treatment options.

How old are your DC? That's by far the most heartbreaking aspect of this whole shitshow.

Did you really think you had cancer, or was it still a massive shock when you were told?

What have you told your kids?

What I wish I could say to people is an interesting question. I'm very open and do tend to say whatever is on my mind. But I suppose there are 2 things.

One is that I'm all too aware of the fragility of life, it may be a cliche but it really does make yyou appreciate the little joys, not sweat the small stuff and not stand for any crap. You get one chance at life, don't waste it on things ajd people that don't make you happy.

And secondly, I know people struggle to get their heads round how I cope, how I actually get through the day and often seem like there's nothing wrong. The fact is I don't have a choice in the hand I've been dealt but I do have a choice in how I face it. It didn't happen overnight, I'd describe it as similar to the stages of grief and I've now arrived at acceptance. Sometimes I wallow, sometimes I absooutely panic, butt I'm mostly good at focusing on the here and now and squeezing joy out of every day.

My aunt was diagnosed with incurable breast cancer 15 years ago and she’s still living a good life!
Here’s to many more years for you xx