Active discussions

Please or to access all these features

Talk
Life-limiting illness

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Just so sad and scared

34 replies

Devastatedmummy51 · 10/12/2022 22:11

I had breast cancer in 2018 and had the works - chemo, mastectomy and radio added to which I've been on various drugs since then to try and keep it away. I had Herceptin, which unfortunately caused heart failure, but I've been managing with that without too many problems.
Fast forward to now and I've found out a week ago that the cancer has returned and spread to my pericardium. I don't yet know if it's spread anywhere else, but I do know that metastatic breast cancer is incurable and that it's now a question of when, not if it's going to kill me and how long treatment can keep it at bay.
I have a lovely husband and two boys, aged 9 and 12. I am devastated to think I won't live to see them grow up - I may get a few years, or I may not even see my youngest start secondary school. Options, exams, driving tests, girl (or boy) friends etc etc etc. Their dad is great, but he'll be grieving too and I worry how he'll cope.
I'm scared for myself that I may die a lingering, painful death, but also horrified to think that they'll have to witness it.
We haven't told the boys yet, we're waiting until we have more info from oncology about treatments etc, but I look at them knowing I'm about to tear their worlds apart. I just want this not to be true.

OP posts:
Eyesopenwideawake · 10/12/2022 22:20

I'm so, so sorry. Whatever time you have left will be precious for you and your family; you will never, ever leave their hearts, minds and memories. Take the time you need to consider the options and be open about your fears - don't be afraid to lean on the shoulders of those who can support you. I'm sure others will be along with more useful advice but I just want to give you a virtual hug. X

YoSofi · 10/12/2022 22:22

I am so sorry you’re facing this. I don’t have any advice but I’m sending you love and strength x

SweetSakura · 10/12/2022 22:30

I'm so sorry, that must be devastating. and must be exhausting trying to put on a brave face for them right now although I can understand why you are waiting to know more first.

You will have already filled their lives with so much. I know that doesn't take away what they and you are losing, but you will have given them so much already. I look at mine now, at the same age,.and know that they would carry me with me for ever if anything were to happen (I have a serious condition so could live ages but equally even a cold could take me)

gogohmm · 10/12/2022 22:56

I'm so sorry but please don't give up hope - there are new drugs that you may be a candidate for that whilst not a cure can help ensure the cancer is kept in check.

RandomMess · 10/12/2022 23:02
Flowers
Properjob · 10/12/2022 23:03

Sending you strength and a huge hug, you are, and will still be an amazing unique woman and mother. None of us knows how long we have, really. I hope you will have some beautiful experiences with your family as soon as possible...Flowers

Fantasea · 10/12/2022 23:03

@Devastatedmummy51 so sorry to hear your update. Please feel free to come over to the thread in General Health called 'Cancer Support Thread 84 - Gently Crunching Our Way Into Autumn' (sorry I don't know how to do a link) where we are all living with cancer in various forms, you will be very welcome. I have incurable ovarian cancer and have found the thread to be so friendly and supportive. There are lots of ladies with BC who will be able to help and we can all listen Xxx.

LadyWithLapdog · 10/12/2022 23:06

I am so sorry. I hope the news isn’t as bad as you think and that you will have more time with your family.

mrsharrisgoestoparis · 10/12/2022 23:06
Flowers
longcoffeebreak · 10/12/2022 23:12

I hope so much you have a long time ahead of you

ShellsOnTheBeach · 10/12/2022 23:15

I'm so sorry.

Are you being treated at a major cancer centre - can you get yourself enrolled into a clinical trial?

Cancer is such a fast evolving field. there are so many advances, so many new treatments in the pipeline.

Sending strength to you and your family.

Nat6999 · 10/12/2022 23:17

I'm so sorry, please don't give up, lots of people still lead a fairly normal life & live with cancer. There are new treatments being found every day, would you be interested in putting your name forward for a drug trial?

Original poster
Devastatedmummy51 · 10/12/2022 23:30

Thank you all for your kind words. Ironically, I've been on a clinical trial since my original diagnosis, but either the drug was ineffective or I was on the placebo! I'd be more than happy to enrol in another though.
The limbo between being given the news from cardiology and starting the roller coaster of oncology scans and treatment has at least given us the chance to take a breath and have, for the boys anyway, a fairly normal Christmas.

OP posts:
Latetothetable · 10/12/2022 23:33

Sending you all lots of strength and love x

justgettingthroughtheday · 10/12/2022 23:45

Sending hugs. Fellow cancer sufferer here.
Don't loose hope. Wait and see what your options are. No your cancer might not be curable but people are living with cancer for longer and longer. And I do mean living. My mum has a friend who is 15 years down the line from where you are now. She's here and doing well. Her constant has basically said one day cancer will be viewed as a chronic condition rather than necessarily a terminal one.

Try not to get dragged down into the what ifs. Try and concentrate on today. Today is all we have.
Sending best wishes

shiningcuckoo · 10/12/2022 23:52

I'm so sorry. I have terminal lung cancer. Two major operations and a cardiac arrest during the second operation and its come back in the other lung. I have 16 year old twins and I'm devastated that I won't see them become adults. This is how I deal with it - I have mentally put the diagnosis into a little box and put it away in the back of my mind. Every so often I take it out and have a look at it. Sometimes I talk to a friend about where I am with it, sometimes to a counselor, sometimes to the oncology nurse. And then I put it away again. I have lots of plans for living my best life before my health fails. I recently took my kids to the US and I have big plans for travel in 2023, all being well. I don't allow myself to be patronized by well meaning platitudes - crap like "you just need to fight it" or "I have an aunt who lived to 90 with this kind of cancer" or "have you tried this batshit herb?'
My cancer carries something of a stigma - no, I have never been a smoker - my cancer is down to a genetic mutation. Victim shaming is quite common - my exh told me that it was down to all the nasty things I said to him when he took up with his colleague! All I'm saying here is to keep your truth filter on so you aren't adversely affected by bat shittery. Good luck, stay focused and enjoy your lovely family.

Original poster
Devastatedmummy51 · 11/12/2022 00:21

@shiningcuckoo I like that idea. I'm usually pretty good at compartmentalising things, so I can hopefully work towards doing that. I think I'm honestly still in shock and feel like I've been slammed into a brick wall that is preventing me from going where I want to go.

OP posts:
daretodenim · 11/12/2022 07:04

devastatedmummy51 I'm sorry you've already been through so much with cancer, treatments, and that it's reappeared.

I hope you manage to have a good Christmas period, despite this news.

mrsharrisgoestoparis · 25/12/2022 21:14

I hope you had a nice day x Flowers and I have checked in to see your coping today x

Bsmirched · 27/12/2022 15:54

@mrsharrisgoestoparis thank you - can't be bothered to name change again! We had a lovely day.

mrsharrisgoestoparis · 27/12/2022 16:06

I am so happy to read this and please think positive. Miracles do happen xx

ashitghost · 30/12/2022 01:00

I had cancer in 2019. My best advice to you is this: everybody dies and you’re not dead yet. X

Bsmirched · 31/12/2022 23:29

@ashitghost I'm well aware. I'm not dead yet. I first had cancer in 2018 and remained pretty positive through the chemo, surgery and radio, but it's a very different kettle of fish when you're having treatment for what you hope is a cure. I'm sure you read my original post, (which I'd name changed for) but I'm in a very different position now.

vipersnest1 · 31/12/2022 23:47

@Bsmirched, you go girl (/woman/lady/person)! We have no way of knowing how our lives will pan out (believe me, although I'm not in your position, there are plenty of things that challenge me).
Sorry to ask, but have you got your wishes in place for the end of life, resuscitation, what you want for your funeral (or direct cremation - whatever you want)?
It would also be helpful for you and your family to clarify how you want your end of life to be. (I'm not affected by this, but my DM is - she has a RESPECT form in place which outlines her wishes. I know the ins and outs so it makes it easier for her and for me - there need not be any discussion as that is what she wants.)
Sorry to be so blunt. Flowers
Given that you are where you are, as much as you don't want to be, and as much of a stranger that you are to me, yet I still care about how you feel.
I know it's not an easy thing to go through, and I feel for you. Whatever you're doing now, in whatever way, if you're holding on, or not, it will be what you wish.
Speak loud and proud about what you want.
My very best wishes and thoughts to you.

sandgrown · 31/12/2022 23:52

Just thinking of you and hoping the news is not as bad as you fear x