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Mums handover to palliative care

6 replies

LilmissCa · 14/05/2024 02:54

My mums been battling ovarian cancer for 4years, today the oncology team has passed care to the palliative care team. Even writing this I am so thankful for the last 4 years as from reading previous posts many have not been as lucky.
She currently has a lymph node growth leaning on her bowel & she's been placed on a hormone therapy drug to try and slow the growth.

I am absolutely heart broken, I don't know how I am going to deal with what is to come. She is my everything, my 3 kids even my 6month old are besotted by her. She lives for them and seeing them. She's spent her whole life looking after everyone else.
I don't know how I will have the strength to face people, appts, making plans everything that's to come.
Currently in hospital with my baby, he's ok we should be out tomo, weirdly thinking it was the universes way of pulling my brother into help as I couldn't have gotten through the last appt today with the oncology doc so my brother had to step in & take her.

I popped down to see her for 30 mins today , my other 2 kids were there so there was no conversation around the news. I did talk to her on the phone about it briefly, she's been very brave & at least I could hid the tears rolling down my face.
I don't know how I am going to pull myself together to face her , my dad, everyone else that's waiting on updates about her, talk to nurses , make plans about everything etc when it's all my worst nightmare & I want it to disappear & just be on my own. I also know I will eventually be grateful for this time & I need & want to spend it with her just don't know where I am getting the strength to face it all

OP posts:
HalfasleepChrisintheMorning · 14/05/2024 04:06

I’m sorry to read this. It’s just shit. My Dad has oesophageal cancer and we found out it’s recurred and is terminal last week.

I’m reading Kathryn Mannix book With the end in mind which I am finding helpful.
We have had a couple of big conversations about his wishes, where he wants to die, etc and the GP was fantastic. She did a Respect form about what he wants.
Admin like wills, power of attorney is useful to get into place.
We had a conversation about what he wants for his funeral and I wrote it all down.
I have made sure he knows how loved he is and always will be.
We are making sure we have lots of photos and I videoed him reading Winnie the Pooh so I can hear his voice when I need to.

This is the hardest thing I’ve ever done and it’s not over yet. All I can say is I think we are stronger than we know and we will get through this.
Take care Flowers

whatisforteamum · 14/05/2024 05:03

Sending strength your way OP.
Both my parents battled cancer.dm ovarian stage 4 twice.
Df aggressive prostate.He lost his battle.
All you can do now is take each day at a time.
I think the desire to control the situation or be the perfect daughter is quite high.
All you can do is be guide by your lovely mum and also look after yourself.
Everything will become a memory anyway and some of the best conversations I had with my parents where when they were unwell.
Df told us his funeral plans so we weren't shocked by anything when he passed away.

LilmissCa · 14/05/2024 23:08

@HalfasleepChrisintheMorning so sorry to hear about your dad, you & him are both so strong to be able to have them conversations & have plans in place. My mum has a great relationship with her GP so I'm sure she will provide similar support. Such a lovely idea getting him to video reading Winnie the Pooh, I would love to have a video of my mum reading to my kids so they will have it when they are older & for me to hear her voice too. Also thanks for the book recommendation I will check it out now

@whatisforteamum i am so sorry to hear about your dad & I hope your mum is doing well.
I do feel a need to control things. My brothers live away so it just me my parents turn to & since covid I have done a lot for them. I struggle to ask for help in any situation & like doing things myself. I do know this won't all be possible & already glad that the palliative care nurse is calling tomo. I just need to somehow gather more strength to be able to talk to my mum about things.

OP posts:
Hothead2020 · 30/05/2024 22:36

I am in the same boat as you are and know exactly how you are feeling. I’m unfortunately a nurse specialist in palliative care which is difficult. What’s helping me is focusing on putting each foot in front of the other. I also tell myself that you cannot love someone so much without loss at some point and I’m grateful to have her as my mother. Sending you hugs and strength. 💐💐

curious79 · 30/05/2024 22:45

My mother died of ovarian cancer. 4 years is a slow torture and yet with it a beautiful opportunity to show your love. I feel your pain. Please review your own health in time - it takes such a toll on you too.

The following helped me. It was first posted on Reddit in response to someone who said they didn’t see how they would ever get over the grief they were feeling in relation to someone close to them passing away. I hope you like it xxxx :

On surviving grief
Alright, here goes. I'm old. What that means is that I've survived (so far) and a lot of people I've known and loved did not. I've lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can't imagine the pain it must be to lose a child. But here's my two cents.
I wish I could say you get used to people dying. I never did. I don't want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don't want it to "not matter". I don't want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can't see.
As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.
In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything...and the wave comes crashing. But in between waves, there is life.
Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you'll come out.
Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks.

Marblessolveeverything · 30/05/2024 22:52

We lost mum in February. We had wonderful palliative care and then hospice care at home. To say they were amazing is a complete understatement.

I think the best advice I got from friends was don't worry about the tears they will come. But, so can laughter joy and time shared. Take the small wins, a cuppa in her favourite place, we used to sneak up a proper cuppa when she was in hospital.

Try and build in anything you can for your own well being. I took to very early coastal walks before my children woke, noone saw the tears then.

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