Thread for those who have a parent with cancer?

[Fhortu]

I'm just wondering if there is a general one that I've missed, or, if not, if there's any interest in making one?
(I know there's Still the storm for people who have partners with terminal cancer.)

My mum was recently diagnosed with stage 4 bowel cancer, and I'm sure there are other people here struggling with a parent's diagnosis.

Hi, hope I can join, like some others have said, I've had a look for similar threads but didn't find one that fit.

I'm so sorry that we all have to be here. My lovely dad was diagnosed with skin cancer this year. My situation is a bit wierd because he had a really positive diagnosis but he has refused to go through with the op or have any further treatment.

We're all just struggling to understand why he's made his decision, he won't talk about it & theres so much uncertainty now. We used to be such a close family & its really ripped us all apart its heartbreaking. I've never felt so lonely

Thanks for the advice @buckeejit

It's crazy how quickly things can go downhill. Unfortunately this is now the third time I'm facing the prospect of caring for a terminally ill relative at home. But I can only prepare as much as my mum will allow. She's still so optimistic. Steroids have definitely helped her.

I hope you've got everything in place now for your DM to keep her as comfortable as possible?

And I hope you still have moments of laughter in your house despite the sadness - that goes out to you all that are struggling here.

X

@momentsofmagic google for videos of using the slide sheet & enquire about a steady - hospital discharges should get priority for equipment & care packages.

I cannot recommend enough getting in touch with Marie Curie & would suggest everyone do it. None of the health care team even mentioned it, but we've been waiting for 2 weeks for NHS carers & within 2 days of contacting, a MC came out for 2-3 hours & was able to work with dm & do personal care & support.

@IWantToBeNynaeve that sounds so tough. I really can't imagine doing that level of care for so long.

Thanks @buckeejit

@Passmealargewine I'm so sorry, that's tough. My dm refused palliative treatment & I spoke to neuro nurse & she said the treatment wouldn't help much. Parents found it so traumatic going up to the city hospital for the diagnosis-couldn't get a parking space etc that it sounded like they couldn't be arsed going all the way up there just to live a bit longer which was infuriating.

@WeebleGirl thank you. Sounds like a bed should finally be coming tomorrow. Agree that there needs to be laughter & lightness alongside these dark times for us all. I've taken up cold water swimming & aiming to escape for a couple of hours to the sea to do a dip. Just for the distraction of something

@Winterfairy23 yes, mentally preparing is probably a good thing to do. Even though it’s obviously a bloody awful thing to have to do.
Hope the appointment goes as well as it can. 🤞🏻🤞🏻

Is anyone else struggling with family members?

My brothers are oId fashioned & all 3 have the wives names down for all the cooking rota & think mum wouldn't be happy with them doing personal care, (presumably because it's a woman's role-pretty sure mum would not care who gave her help), so it's left to me & sisters in law who are all amazing but ffs I am a bit raging about it. I'm more than happy doing it especially after everything my mum has done for me, but I'm really disappointed by their backward attitude & think they should be stepping up to it. I've had to push to get them to think about emptying the catheter.

Is anyone else struggling with family members?

We're not yet at the stage of my mum needing much more than emotional support, but her "favourite" child has been properly crap. He's very much a mummy's boy, living practically next door and being very dependent on her. Since the diagnosis, he's barely been near her, and while part of me thinks he's maybe just really struggling with what's going to happen, in my angrier moments, it feels like now that she's no longer able to dole out the nice home-cooking and endless praise that he seems to need, he just doesn't see that there's anything in the relationship for him anymore. I think situations like this can either really change or really intensify the family dynamics.

And again, it feels like all I do on this thread is repeat how sorry I am, but, to the people who've joined since I last posted, I'm sorry you're all in this situation too.

@Fhortu it's the eldest favourite mummy's boy causing the most problems here too. Hospital bed arrives this morning which is good but also another level of depressing

@Fhortu that would rage me up. I think I would struggle to maintain a close relationship with a sibling that left me to deal with everything when they live close by.

@buckeejit takeaways, microwave meals and beans on toast are perfectly acceptable meals at this time. And if they aren't helping with personal care - which is a challenging part of end of life - then they should be regularly sorting out the food at the least!

I'd be tempted to just cook for myself and my mum (though I'd probably never be so bold).

buckeejit, yes, eldest son trying to escape the unpleasant stuff here too. I'm glad you're finally managing to get the equipment you need anyway, even though it must be very upsetting.

WeebleGirl, in a weird way, being angry with him is a nice change from feeling so sad about my mum. It's all relatively recent so I'm hoping he's just taking some time to come to terms with it.
It's awful though that this is the third time you're having to deal with this. You must feel swamped by it.

Does anyone else find that it hits worse at night? I can be so practical during the day but at night it sometimes feels unbearable.

@Fhortu nights are so bad. During the day I’m busy with her constantly helping or doing things around the house then the evenings come and I break down or wake up sobbing in the middle of the night. I hate being alone just now. Too much time to think. Hope you’re ok.

Also struggling with nights here-I've been beyond knackered all day & cried for most of it but just enjoying the space & a glass of wine alone now, dh just gone to bed. I should have went 2 hours ago when I got home but am too wired.

@Fhortu I agree the anger seems to be a subconscious diversion. I am raging about things I could normally let slide. It's difficult as I'm very honest when I'm annoyed with people & my family aren't remotely used to this.

District nurse mentioned hospice possibility today. Dad only really listens to healthcare providers & not me & brothers so the suggestion at least penetrated.

All the brother men were uncomfortable when I mentioned it a couple of weeks ago. None of us remotely want that but if the reality is that it's going to help dm in the final stages, I really don't want us to discount considering it for the sake of digging our heels in. I'm the only planner in the family & moving ahead mentally is hard to navigate with anyone else. Gin I found myself a 5 minute timer then try to get to bed & sleep

Winterfairy, your post brought tears to my eyes. It's so difficult, isn't it? I've taken to listening to audiobooks until I'm properly falling asleep. Otherwise I start thinking, and that never ends well. But then I wonder if blocking it out now means storing up some big problems for later.

buckeejit, oh, I'm sorry. It really sounds like all the brunt of this is falling on you. And I suppose it's not that surprising they were resistant to the hospice when they aren't really the ones accepting responsibility for your mum's care, but palming it off on their sister and wives. They're just assuming you'll be able to manage it all and make her comfortable, I suppose. It's so unfair on you and must be infuriating, but I hope you did manage to get some sleep in the end.

I've gone through a few spells of rage. Right after diagnosis, I had a couple of days of looking at people much older than my mum, and feeling outraged that they're still doddering about when my mum is very unlikely to get anywhere near that age. And I felt angry that a few other family members who smoke like chimneys, drink like fish, and basically live on pies and chocolate, are absolutely fine, while my mum always tried to be healthy. It wasn't that I think smokers/drinkers deserve to get sick, but I think the anger has to go somewhere. Also found myself driving up the motorway the day after we found it had spread to the liver, and allowing myself to get pulled into a road rage incident with Billy Big Bollocks who decided the solution to the cars ahead of me being slow to overtake (in his eyes) was to tailgate me, flash his lights at me, undertake me and then cut me up, only to get stuck behind the car which was actually slowing down the traffic. My husband banned me from driving for the rest of that weekend as I undertook him to make a point. Normally I'd be ranting but still driving in a fundamentally safe way.

@Winterfairy23 can you check if Marie Curie can provide respite care-they do a multi sit service which I'm hoping we can access for dm. They have been an amazing help & I'd recommend reaching out to try to get some help from the charities. It's too much for one person. In our case it's nearly too much for 8 people! Feeling supported counts for so much in this situation.

@Fhortu I've done the rage thing too & think it's just a distraction from the grief. The Billy big bollocks drivers do induce the rage faster!

We're having a meeting tonight about how to proceed & Ive again said there's not really any point in the boys being there if they're unwilling to do the caring side....praying that I will have the patience to get through it in a calm manner.

Hi, I’ve just read everyone messages and I don’t know what to say except I understand and have felt the same as many times. I’m sorry we are all having to go through this.
My mum got diagnosed with pancreatic cancer in July; it was a shock as she had no predetermined risks for it apart from type 2 diabetes which seems so many people have- so why her? It’s been a whirlwind of doctors appointments since; her surgery was cancelled as she got too unwell for it due to a newly diagnosed thyroid problem; her diabetes has been unmanageable which has meant ambulances being called and I’m managing this on my own whilst living and work 2 hours away.
We go to hospital today to see what the next steps are- reschedule surgery, chemotherapy (although we were told before very unlikely), or palliative care.
My dad died nearly 3years ago so mum is on her own.
Sorry for the long post.

cherrypiesally
I hope the appointment goes well/as well as it can in this situation.
The endless stream of doctors appointments is really hard. The stress of someone you love being scanned and poked and prodded, then having to wait for results, and then be given more traumatic news really takes its toll. And then for treatment not to go as planned is the cherry on the cake.
And don't apologise for a long post - this is a place to freely rant/let it out whenever you need to.

I don’t think my Mum is coping very well. Although she’s not really saying this, I just sense it. My Dad certainly isn’t.
Has anyone had any support from any organisations?
Like others, I don’t live nearby, unfortunately, so can’t just pop by. So I’m trying to think what I can do to get them additional support to help them both deal with what their going through.

@cherrypiesally hope you're doing ok after the appointment

@ElizabethTudor sorry to hear this. Get in touch with Marie Curie - they offer counselling for the patient, (not sure about carers but worth asking). We've been waiting for a care package for 2 weeks now & they are sending someone every other morning fir an hour until the Trust provides carers. It's such a great service at a much needed time. They are bound to be able to signpost you to further support. Our healthcare team are a bit shit but look up local older people's charities.

My parents have a very strong faith & something small but meaningful I did was make them a playlist of hymns that they can play on their Alexa.

Also if there's a local church, they sometimes have a care & share group. We have a good morning charity service locally that telephones older or vulnerable people to check in & chat Mon-Fri. They can choose 1-5 mornings a week for a call & the lines are manned by wonderful volunteers. It's ace & there might be something similar in her area which may help with other practical things like hospital appointments.

Thanks @buckeejit
Some good ideas there. I’ll definitely check out Marie Curie and the local church.

Hope everyone is coping ok.

Today has been tough for me. Dm has been diagnosed with a kidney infection & started antibiotics but db & sil really struggled moving her last night & it was discussed she would be safer in bed. I said this morning after the Marie Curie nurse came for personal care that the nurse said it would maybe be good if mum could have a rest day today & stay in bed. She said 'ok then' but 10 minutes later said 'so I have to stay in bed all day?' & was clearly down about it. I said she could try & let us know if she couldn't manage it & wanted to get up. My dad struggled too. I think life seems almost normal as long as we can all sit round the table & drink tea & eat biscuits.

It is so difficult to see her so far removed from herself, and feels like an awful thing to say, but I'm wondering how long she will have to go on in this way & getting worse. Does anyone have any idea how accurate they are with their prognosis estimates? We're getting close to her estimated time left. I don't want her to die but I don't want her to live like this either ☹️

Buckeejit
Sorry, I don't know anything about how accurate prognosis estimates tend to be. Just wanted to say I'm sorry things are so tough, and I understand about the not wanting someone to die but also hating to see them deteriorating away from what they used to be too. I hope today is a better day for you and your mum.

I've been sleeping badly this week. I think the constant push alerts or news items about Sarah Harding haven't helped. And the fact that my mum is feeling really lousy from the treatment. Normally I can compartmentalise off from it a bit, but it just feels like there's been no escape from cancer for the last few days.

Hi all, hope everyone is holding up. It’s been a stressful week. Like some of the comments above, I have a sibling who isn’t that forthcoming with helping so everything has fallen on me for a good few days.

The doctor doesn’t think my mum will be fit enough for chemo but she has another appointment next week to discuss it further.

Has anyone been told their loved one wasn’t fit enough? How fit do they need to be?

I'm in the same position with my mum, who's cancer is inoperable and aggressive. Can I ask about the estimated time they have left? Does the patient ask or can the family ask? Presume it is the consultant oncologist.