28 and dying, struggling with anger.

[nobetterplace]

Hello,

I’m a mum of two little boys, I have a four year old and a one year old.

I’m 28 years old and I was diagnosed during my pregnancy with stage 3 ampullary cancer. I had surgery to remove the tumour but unfortunately the cancer had spread to my lymph nodes and to my liver and it is terminal.

I have wonderful people around me, who are trying to make everyday special for me and support my boys but I am just so angry. I can’t find any acceptance or calm, I am so angry that this is happening and that I am completely powerless and cannot stay for my boys. No one can say once I’m gone that I’m finally at peace, peace is at home with my boys and I don’t want to die. It’s not a situation you think about until you’re in it but I feel like you expect sadness, grief, perhaps eventually acceptance but I feel this blind rage and desperation to fix something I can’t fix.

I don’t want to burden the people around me, at the end of the day soon I will be gone and they will be the ones picking up the pieces. It will make it a lot harder for them to move on from if they know how angry I am and not that I “am in a better place” like people say.

I want to soak up my children for every second I can but I find every second with them gut wrenching. I have so many things I need to do, I want to write them letters, I want to film videos for important occasions, I need to wean my littlest off the boob so he doesn’t just suddenly have to go cold turkey because I’m no longer alive. I just don’t know how because when I go to do these things I just feel this blind rage that I am having to do these things.

It’s a situation where I imagine the best people to give me advice are the ones who have been through it and who aren’t here anymore to share it. I don’t know if there are words of wisdom that can be given, but if anyone on this sub can somewhat relate even on behalf of a no longer here family member, I’m desperate for something.

So sorry OP. I would also be really angry! It's never fair, and awful when young families are involved. I lost my Mum in her 50s but it's still massively unfair and wrong......

This post reminds me of that lovely Irish girl who came to London for treatment but still died. Her DH posted here to tell us, so sad. My heart breaks for all of you.......

I lost my father recently to cancer.

I was young to lose my father, but nowhere near as young as your two.

You talk about writing letters, but I wish I'd recorded my dad speaking to me. I miss the sound of his voice, and I'm scared that it's fading away. Tell your kids you love them (by name) and record it. It will mean the world after you're gone.

Even better, make a video if you're well enough to do so. Again, seeing the way your head moves when you say certain words... priceless.

Talk to people. If you want, stay strong for your family, but talk to your friends. I can also wholeheartedly recommend Marie Curie's helpline if you can't bring yourself to talk to your loved ones: https://www.mariecurie.org.uk/help/support/marie-curie-support-line It's run by some of the kindest people in the world.

Your friends and family will want to support you, but won't know how. If one of them can bring you some plates to throw on the ground and smash, just ask. People love being given something practical to do, as they just don't know how to react to the notion of death. You have a whole network of people on hand just waiting to be summoned to action.

Anger is understandable. If it's how you feel, it's how you feel. Don't feel under any pressure to die presenting yourself as some saintlike woman. You don't want to die - you're a 28-year-old mum, of course, you bloody don't! No one is going to expect you to accept it - it's a shitty, shitty hand you've been dealt.

I'm so sorry for everything.

I have no advice. I’m just so very sorry that you’re going through this. Xxxx

I am so sorry.

I second what @troublemeltslikelemondrops has advised regarding recording your voice/messages for your little boys. My mum died when I was in my 30s with cancer. I remember in her final days when she became too weak to talk being devastated that I’d never hear her voice again.

This is just shit and unfair @nobetterplace My throat hurts with the lump in it thinking of you and your boys. Xx

Well I consider myself a tough old bird, but by God this has me crying.

I am so sorry this is happening to you, it’s not bloody fair and you have every right to be furious, I am angry for you.

Please tell your family how you feel, they may be able to assemble a support framework to hold and guide you through the months ahead. You are not doing this alone, please lean on your loved ones, I am sure they will be feeling just as angry as you are.

Sending love to you and your children, I’m so very sorry x

Oh OP you have brought tears to my eyes. My DH was diagnosed with terminal cancer when our boys were 4 and 1 and he died 11 months later. It was the worst time of my life and I still miss him 17 years on. I’m so sorry this is happening to you and your precious boys.

Funny how it's never the violent, greedy, awful people that get cancer. They all seem to lead long lives.

I hate that this happened to you. You're about my aunt's age when she died of leukemia in her early 20s. She stayed her kind, gorgeous self throughout the weeks it took her illness to kill her. My mom and I sat at her bedside feeling completely useless, the rage is like nothing we've ever experienced. All those metaphors about anger, they all fail to capture what it feels like to be consumed by this dark thing. Her cancer was the first thing in our lives we couldn't fix, and it breaks you.

My mom got cancer herself a couple years ago, and the anger came back for her like it had never left. I can't imagine what it's like myself but the least I can do is get angry on your behalf that you have to die before your 30th birthday. It's must be infinitely worse for you. I'm so sorry I'm bad with words, I just want to let you know we'll be thinking of you, and your kids and loved ones.

In your letters to your dc, write about your rage, that you didnt leave them willingly even for a second. It will help them to know that their mum loved them and her life so fiercely.
All the best OP. 💐

My colleagues wife died of cancer leaving 2 tiny little boys (4m and 3 years) he talks openly about they got through it and I know has helped other parents and children with loss. He's a very practical man.
I'm going to PM if you want to reach out to him.

I'm furious with you. The weening your littlest is such so horrendously heartbreaking, I'm sorry.

Thank you for this thread. I am furious for you too. You are doing all the right things for your kids. I will pray for a miracle for you now.

You have every right to be angry, don't feel guilty. Allow yourself time to feel what you want. Ask your consultant if they can put you in touch with a therapist so you can discuss how you feel & discussing it with someone independent who isn't emotionally connected may help as you don't have to worry about upsetting them & can be completely honest. While you are there, you can shout, cry, get as angry as you want, they can help you make sense of your feelings & get it out of your system so you can go on being the wife & mum you want to be for as long as you can.

You could get a notebook for each of you dc & write them their story, start with their birth & then stories about them growing & tell them things you think they will want to know about their childhood up to now. Then, start to write them a page for every year in the future, advice about changing schools, growing up, exams, leaving school, going to university, getting a job, leaving home, relationships, getting married, having children, give them all the advice you would if you were there. Use a spiral bound notebook & then if you are hopefully around longer than you are hoping, you can rip out pages that you are there to give the advice in person. Make them each a memory box, photos, a memory stick with videos of you, a special Teddy or cuddly toy, something like a keyring that they can keep with them to remind them of you, keepsakes or pieces of jewellery. Buy them a special present for their 18th birthday, have it engraved, something like a watch, my ds got his Granddad's watch for his wedding day & I had it engraved with love from Grandad for him, he treasures it.

It's one of the best ideas I've heard suggested on here. To be able to hold something and hear their mum, that would give them so much comfort. Hopefully that's a while off yet.

Thoughts go out to you OP.

@nobetterplace I'm really sorry that you and your Family are facing this horrible thing.

My Mum died of a long term illness when I was 2.5 yrs old, and she was in and out of hospital for so often,
bless her.
I have shadowy memories of her, but back then, there were no such things as 'Memory boxes' for children...No videos to anything like that that would be cherished.

My half brothers as adults {Dad remarried} said that some old tapes were found of my mum up in the attic, and Dad got rid of them in case it ''upset me''!

I'd have loved those tapes. Thankfully I do have photos.

I do hope that we will be reunited in some form one day with our beloved people.

It is especially cruel for young mothers to become ill- it is all kinds of wrong.

Dad said when I was an adult that it really upset Mum to know she wouldn't be around for my childhood - but I do wonder if she has protected me sometimes...I like to think so.

It's no wonder you're angry, wtf.

Turn your anger onto the cancer, imagine where it is, tell it in no uncertain terms to f-off and scream and shout at it.

Obviously, you're doing everything you can to sort your boys out and do the videos etc.

My friends daughter had cystic fibrosis. She died at the age of 26 - old for someone with CF. She knew she was going to die young, but it wasnt until she has systematic organ failure that she grieved for not having a child and doing everything she wanted to.

I cannot imagine what you're going through.

It angers me that a PDT molecule I worked with never got developed to treat cancer - in fact it never got developed for any use. In my heart I know it would have been a game changer, but the inventor and his old croney share holders were so concerned about giving any of their shares away for decent money today that they didn't progress anything. Complete and utter idiots.

I pray you get a miracle.

Sending you a huge hug x

Rage. Scream. Yell into the void all your anger and frustration and sadness over the unfairness of this life.
Then rage and scream and yell some more.
Until you’re hoarse.
My lifelong partner-in-crime got cancer and that’s what she did. She raged at me, at her mum, at the clouds and the sky.
And then she died.
But she died having got all that rage and anger out and she died in peace, knowing that whether or not she was angry or peaceful, death was coming for her. That’s what she told me. She was my cousin, my sister.
She felt like you do - that it wasn’t fair or kind that she was chosen, yet sure enough she was.
It took her years to wrap her mind around the fact that her cancer was terminal - it took the rest of us right up until the moment she passed.
Start screaming - get someone to take your boys out for a few hours each day, and SCREAM and RAGE and REBEL against the unfairness of it all.
Because it fucking is.

I'm so sorry to hear your news. My mum died when I was 7. My siblings were 9, 13 & 15.

We've all turned out ok.

My mum didn't leave us any letters or anything like that which I do wish she'd done. I dreamt of her for the first time when I was pregnant.

I wrote the story of my DDs births etc because it was information I was missing that it would have been helpful and meaningful to have.

So I'd say if you can leave them letters for their birthdays and big days in their lives. Tell them how to be good men and good people. Leave them advice for teens because they will listen.

Know they will love you forever and always hold you in their hearts.

Oh OP my heart really does go out to you. I’m older than you, 46, with an 11 year old and a 5 year old, but medical position is similar.

I had a random seizure a few months ago and following months of tests, yesterday got a diagnosis of multiple glioblastoma, stage 4 and particularly aggressive. Without treatment I apparently have around 3 months left.

It’s therefore a very easy decision for me to take all the treatment they’re offering, which will be whole brain radiotherapy and chemo in tablet form. There will be side effects, naturally, but in my view nothing which can’t be managed. With the treatment, life expectancy goes up to 12 months plus, and one of the clinical nurses said yesterday he had known patients in my position, ie otherwise well and able to stand treatment, go on for as long as 10 years or more. I took that as a positive as I was expecting the timescale even with treatment to be less.

I can feel my inner stubborn streak kicking in, along with a determination to focus on positives. I am determined to be here for a long as possible to be a wife and a mum to my girls for as long as I can. As long as I am still “me” inside my head, and have some use to me (!!) I will carry on fighting.

i realise I am very lucky to have a brilliant support network around me to do this. My husband, dad, two sisters, parents in law and sister in law have been and are being incredibly supportive which in turn helps me be strong.

At the moment I’m able to carry on doing some work from home, albeit in a reduced capacity. My colleagues are incredibly supportive and have done a lot to take the high pressured side of the role from me. I’m finding immersing my mind in work a good distraction from medical matters.

after being a bit of a hermit for a few months im also getting outside again, which has also had a positive impact on mood and energy levels. I’ve started doing school drop offs again and even managed a kids party for the youngest at the weeekend!! The idea of chatting with other parents was daunting, but now I’ve done it for the first time it was easier than I thought and will be again next time.

at the hospital appointment yesterday we called into the macmillan centre in the hospital and they were really helpful. They’ve started off a claim for PIP and a blue badge, and they have details of counselling services for the girls if needed - I think it may be more geared towards our 11 year old at the moment but worth having when the time is right for our 5 year old as well.

I know it isn’t a one size fits approach for everyone, but I Just wanted to let you know that your story has touched me so much. You are not alone in all of this. If you ever want to PM me to rant, moan, swear and generally complain about the whole cancer shit show then please do feel free!!

Please do know you are in my thoughts and prayers xxxxxxxx

I cried reading this op. Last year I was diagnosed with stage 3 low grade cancer, and although my diagnosis has changed now slightly I a positive way due to pathologists disagreeing and arguing for many months, I too went through the absolute rage and anger that you feel. I have never spoken about it with anyone but every word you have said echoed how i felt. My diagnosis came when my second baby was 3 weeks old and my tumour was found at my c section.

I also know what you mean when you say looking at your children is gut wrenching. It’s not fucking fair and you have every right to be angry: who wouldn’t be, you don’t want to leave your babies.

I agree with what so many of the other posters said, but I’ll post a couple of things that I did and continue to do after diagnosis that may or may not help you.

1. I began at bedtime to tell my eldest (age 6) my favourite thing about them every night, and then also spoke about a favourite memory each night - this has been lovely to do. I have had lots of therapy and my therapist suggested that when children are little they don’t always remember the actual event but if stories of the event are repeated often it sort of becomes interwoven with their memories in that way and they remember the story more than the event.
2. i started gathering photos and sorted them into each year. Then I went through each photo and wrote the memory that is attached to the photo, telling little stories or things that made me smile about them. I’m making this into several books for them to look back on and will continue doing it
3. i went to build a bear and got them both teddies with my voice in (and also my partners voice so that we spoke together)
4. my fiancé got me a beautiful box at Christmas that says mummy’s favourite memories of xxx and xxx - I have been filling it with anything that is special
5. ive looked into those books where you can tell your life story and it suggests questions for you to answer so it’s not like starting from a blank page

None of this I did quickly, I often found it overwhelming to even begin, and right now I am in a good place but I know the future is uncertain and this helps me feel organised more than anything. It doesn’t help the rage, I don’t think anything will help that darling, go with it and breathe through it and allow yourself to feel everything. I am so sorry x

'I think this is really beautiful.
I was the child in this situation, my beautiful mother died young.
It was a time before making videos was easy.
I would love to hear her voice again, that memory seems really hard to recreate.
I have found shopping lists and things with her writing on that I have saved and kept.
All these things will keep you alive in their memories. I would do anything to have something like these.

My mother died 30 years ago this year and I still miss her but as time passes I feel the gift of having had her as a mother.
Both the OP and this poster sound like beautiful mothers. It is very hard and wrong that this has happened to them'

@Amara123

Thank you so much, that's made me cry 😢

I've actually thought to myself that I wanted to ask other people who have lost a parent at such a young age, what they wished they had from their parents. Only due to technology am I able to do this for DD, but it's really helpful to see things that i could be doing. I've added 'add shopping lists to memory box' to my never ending list. I'm so sorry you lost your beautiful mum.

So far in DDs memory box I have:
Dehydrated flower petals from our wedding day
A piece of my hair
My favourite perfume, brand new in the box
Her birthday and Christmas cards
A playlist of mine and DDs songs we dance to
Fool proof homemade bread recipe
Sourdough starter instructions (she may not want this, but she loves my bread so added that in)
Lots more little bits and bobs. I made her a bauble to put on her tree.
One of my lipsticks.

The email is more so like a diary almost. But the diary is a lot about her. What we got up to, what she did that made me smile that day etc. I just want to leave little pieces of me everywhere. I don't know how long I have, neither do my MD team, but doing this does genuinely bring me some comfort.

It's soul destroying, but seeing posters on here as much as it broke them, that they are okay, gives me comfort.

Thank you for your lovely words. I'm so sorry you lost your beautiful mum 💔

Thank you for your kind words ❤️‍🩹

@itsjustturbulance My heart goes out to you. Just another thing I would have loved. I would have loved to know the story of my mother's life. My father knows her life after they met and her family knew her childhood but I'd love to hear her description/impressions. She lived abroad for a while for example and I'd love to know where and what she did there/worked as/her memories/adventures. Why did she pick certain jobs etc.

I would have loved her advice on things 'when you argue with a friend, when to break up with someone, getting over a breakup etc'. Nothing too long.

@caringcarer thank you ❤️

@Mufflette I'm so sorry you lost your beautiful mum at such a tender age, and thank you so much for your kind words.

I feel like I'm taking over your post a bit, OP, so I won't reply too much now but thank you in advance for anyone who replies with kind words on some of my replies.

It's an utterly soul destroying place to be, but knowing I'm doing right by DD, who is my absolute world and more, does bring me some comfort. I love the bones of her, and I won't go down without a fight, for her ❤️

Oh OP. I was also diagnosed with cancer during pregnancy.

And I was so, so angry. I still am. I can't understand how my life was so perfect, and then one fucking rogue cell got out of control and ruined literally everything. The life I should have had is so close that I can almost reach out and touch it, but instead I'm stuck in this nightmare. Gestating a child whilst knowing that there was a really big chance that they would never remember me broke me. I deserve to be a mother, for fucks' sake. I love my children and I deserve it.

Of course you're angry. You shouldn't feel in any way apologetic for that. I've got no patience at all for the pressure to put a brave face on at a time like this, and to be graceful and accepting and only showing a cheerful smile to the world. All that gets you is murmurs of approval at your funeral, and mourners who feel better about their own mortality because you didn't make it look so bad. Other adults are not the center of your tragedy and you don't have to make them so.

There are some good suggestions here about leaving your words and your voice for your children. But they are separate to your anger, and will need to fit in around that, because expecting you to be anything other than utterly furious is unreasonable. You are entitled to your rage.