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.

Oh no, I’m very sorry @Cocolapew
Thinking of you 💐

I am so so sorry @Winterfairy23 and @Cocolapew

So sorry @Cocolapew & @Winterfairy23

Hope you're both doing ok & getting some good support from loved ones.

My mum is still here, although has probably only been awake about 2 hours in total a day for the last couple of days. It's very sad but I don't really know why it's so exhausting. Her body seems to have a real natural instinct to survive, although I feel that she is generally detaching from this life. She seldom seeks out conversation other than checking the time or asking for a cup of tea.

I've actually booked myself a ticket for the theatre tomorrow for a short show that I'd been wanting to see. Still not sure if I will go as feel guilty even though I know I'd be encouraging anyone else to go if they wanted. I'm not sure

Oops, not sure how long we'll be in this limbo & know I need some activity away from it once a week to see normal life.

Hospice at home are coming for a few hours on Monday to sit & the family are a bit worried about what the sitter will be like. I'm glad we're getting some more support, although I'm not sure how much use it will be at the minute as we'll still be hanging about.

Hope everyone else is doing ok & gets through the weekend ok

Don’t feel guilty about doing something for yourself @buckeejit - you will feel the benefit. So sorry your mum is in such a bad way. It is totally shit. I hope she isn’t in pain and the hospice at home give you the respite you need

Sorry to hear your news @Cocolapew abs @Winterfairy23.

@buckeejit hopefully the hospice at home works out well - hopefully they will be a help to your mum and you.

It is about 6 weeks now since my mum's cancer returned. She spent a week in the hospice getting her pain controlled and help with dressing of her cancer/wound. She has perked up a lot since coming out and seems almost back to her old self. Has started immunotherapy which is only one session every 6 weeks and no side effects so far. It only has a small chance (20% to 30%) of having any effect on the tumours but at least it gives some hope.

@Focalpoint good that your mum is more or less back to herself. Fingers crossed the immunotherapy had a positive effect.

Hope everyone else is doing ok. I've come to hare Mondays as it just feels like a new cycle of

...cycle of tiring getting through another week.

My dc & more so my bro's dc (just as they're younger), are spoiling the peace a bit for dm so I've offered to have his older pair when they're at my folks. Love my nieces dearly, although my plate feels a bit full.

Hospice nurse came this morning & was nice but don't think dad will easily take any respite while they're there

How's everyone doing? I've a bad cold so been at home the last 2 days & hoping to go back to my folks tomorrow with trepidation & worry of taking germs in. It has been sort of nice to not be running all the time though.

Finally carers are due to come tomorrow night, which will be a bit of a help. The duty sister said 2 days ago that the reason my mum has clung on so long is that we've been giving her such good care. Which is sort of nice but also leaves me a bit puzzled, as I thought the timeframe would be fairly accurate & feels like we're getting into a real routine with the current status quo as she's so stable. I know everything can change in a heartbeat, but outside events are creeping up that I've thought were ages away & I need to organise for - it's ds birthday in a couple of weeks & I don't know what we're going to do.

The theatre was good, really recommend six! Hope everyone is hanging in there & has ok weekends ahead

I haven't been on for a while. But feels like so much has been happening. After a few weeks struggling and another hospital stay Mum has now been moved to hospice. It's been very unsettling and calming at the same time. The caring duties have been taken away from us but we are also taking turns being here. Mum seems to have stabilised/plateaued and we have gone from a prognosis of days/short weeks when she came here to a few weeks. I feel like I am in the worst possible limbo and I feel completely emotionally worn out. Mum is still eating but also sleeps a lot and is completely bed bound. I don't know how long this will last - knowing what is at the end of it but also knowing that she won't ever get better.

Cocolapew. I hope you're looking after yourself.

Buckeejit, we've had the germs issue too. Thought a family friend might have passed covid onto my mum. Thankfully not.

Momentsofmagic, it is crap. The process of someone you love dying feels guelling and like something you have to get through, but at the same time, it's not like there's something to look forward to on the horizon to get you through it. It's just more shitness.

My husband's grandma has now been diagnosed with advanced liver cancer too. Has a few weeks left apparently. She's much older than my mum, and I'm not sure how much she knows about what's happening, but MIL is very upset. Her husband is being spectacularly unsupportive, as usual.

@momentsofmagic mixed emotions I'm sure with the transition to hospice. I too am struggling with not knowing how long it will carry on. My mum has been bedbound for 2 months & now sleeps about 22 hours every day.

@Fhortu sorry to hear about your dh grandma. Any extra illness & death is a lot to take, especially if fil isn't being supportive.

The carers started & frankly it's been pretty awful. I've told them not to come back today as my dad is so stressed. They were very rough & one pulled mum by the arm to move her, another hooked her round the neck, they don't know how to use a slide sheet & one of them drove into my folks wall & knocked off a coping stone & then just drove off without telling us. I've to go through the list of grievances with the social worker in the morning but even my mum who has never complained said they were very rough.

Hi everyone I’m new to the thread and sorry to everyone who has lost someone since the thread began.
dad was diagnosed with stage 4 mouth cancer in May by which stage he was already frail and not eating. Palliative radiotherapy only. He lives alone and isn’t open to accepting much help from carers as he doesn’t like to be touched. So since then life for me has been on hold, signed off work and a very slow deterioration since then and amazes us that he is still alive considering he hasn’t eaten anything more than coffee and a few other bites of food since July. He just pretty much refuses to put anything in his mouth medicines or food.
He is currently in hospital with malnourishment dehydration and infection as he is so skeletal and we’ve heard now he is incontinent and not been walking. He is groggy and difficulty talking and we see his behaviour becoming more passive which is unlike his personality.

The hardest part is not knowing what is going to happen and when it will happen. or if there is a chance he could have more time or will get out of hospital. It feels like we are in a state of flux where everything is the same but also apt to change at any time. Is he going to live for a week or a year, we just don’t know and we don’t get told much. Just sympathetic noises really. The condition affects everything from his speech to appearance to energy to eating so it is all consuming and means we have to guess a lot of what he is feeling as he won’t say much.

@blubberyboo this is heartbreaking to read. It must be so hard for you with so much uncertainty. Hope you have a support system around you.

@blubberyboo that sounds so hard for you. Are you allowed to visit him in hospital much? It's hard guessing what is best for them & not knowing what's ahead. Having his personality seem to change is difficult too.

Can you ask the hospital more specific questions like what it would take for him to be discharged & if it's likely to happen?

Have you completed a DNR? I'm not sure if my dad has done one for my mum & feel like it's too late for me to ask but can't bear the thought of her slipping away & then some of us having to watch a HCP trying to revive her because there's no form in place. Hope everyone is coping ok with their Mondays.

Our SW was horrified to hear of our experience with the carer company. My dad passed them the file this morning & told them their services were no longer required

@buckeejit

Thanks

I’m only allowed to visit once every 2 days for one hour and only me… not my siblings which is hard.

We were phoned by a doctor who told us that they themselves would not be resuscitating if it came to it so it wasn't our decision as such but privately we agree with their decision.
So I understand your feelings there so maybe you could ask if they’ve already made that note themselves in your mums file.

I suspect they may be considering a move for him to hospice rather than home once he no longer needs the acute services. At the minute they are still treating him with IV fluids vitamins and antibiotics. I will try and push more questions in this regard but I hardly ever get talking to his doctor or consultant. When I ring the ward I usually get a nurse who isn’t directly involved with him as his own nurse is busy or on a break so they are just reading notes from a file.

Glad you don’t have the worry of the carers anymore and hope they sort something else.
It’s not acceptable to have poor treatment.

Buckeejit, Christ, those carers sound awful. Is there an alternative service you can use for help?

Blubberyboo, that all sounds really difficult. I'm guessing the lack of visiting is still down to covid restrictions? Fingers crossed you can get some more information about what the doctors expect for the future.

Husband's grandma passed away on Saturday night. This was after we'd been told a couple of days earlier that she'd probably got a few weeks, so it was a bit of a shock to get the call saying we needed to rush to the hospital now to say goodbye. People on my side of the family just tend to drop dead so I've never sat at someone's deathbed before. She'd been saying for a while she was ready to die but the whole family is gutted. And of course you don't want to make someone else's grief about you, but I couldn't help thinking once or twice that I'll probably have to do this with my mum in the next year or two, and that's going to be even harder, with her being my mum, so much younger, and really not ready to die.

@Fhortu

Yes all covid restrictions.
Condolences to your family. Having a death really makes you think about what might happen. However my only advice is always be ready for unexpected. We recently lost a cousin and while there are similarities in the stages we found my dads experience has been somewhat different. My cousin was able to articulate his wishes and so passed at home, with dad a lot is starting to go outside his and out control just with his age and living status and other conditions he has with his speech and memory. Everything we thought we could support him at home with we are finding that we might not.

Thanks, blubberyboo.

I suppose different hospitals and departments have different rules. MIL was allowed to visit her mum everyday, but she was the only visitor allowed until they knew it was a matter of hours, and then the whole family was trooping in and out.
And yes, I get what you mean about the unexpected. None of us really know how things are going to play out.

Hope everyone is doing ok. I'm finding the darker evenings aren't helping when you're in this situation.

Social worker has raised a safeguarding concern over the carer company & hopes to have Trust carers coming for a quick teatime call soon while we wait for more carers. Which would be better than 4 times a day atm as would ease my dad in.

1 out of 3 of my brothers is good at saying when he's available & the other 2 are pretty rubbish. I feel like the default sitter as I never know when they're coming to 'relieve' me. Am pissed off today with one of them who took his dc to a pumpkin trail yest & another one today without writing any times he was available on the rota, yet Ive barely seen my dc & have been at my folks every Saturday for most of the day for the last couple of months. Aargh. I seem to go through a cycle of being able to cope with them for a couple of weeks & thinking this won't last forever, & then just getting really pissed off as I perceive a distinct lack of respect towards my time. I need a holiday from my emotions.

Mum is sleeping so much (22+ hours a day), and usually agreeable to everything but her personality still comes through occasionally & she's started to not want her paracetamol the last couple of days. First she said she's maybe just take one tablet as she was sick of taking them so I got liquid paracetamol & then she said she'd just take a wee teaspoon as she thinks it makes you drowsy! 😆. She's still suffering from the FOMO she always had!

Hope everyone else is doing ok. I'm going to my friends for a couple of glasses of wine & a whole lot of whinging soon.

@buckeejit

Enjoy your wine with friends, you really need it. Im sorry you have all the weight on your shoulders. To be fair my siblings do help if I ask but all summer I’ve felt like my life has stood still so I get what you are saying.

Hopefully the trust carers will be much better than the private ones.

I’m having a day in the house just catching up with the house and family time. I can’t visit hospital today and decided not to go out as every day is spent driving somewhere.
Hospital doc rang Friday and confirmed they are looking to move dad to a palliative setting as they feel he can’t go home. So no doubt I’ll hear from SW soon. I’m a bit apprehensive about how dad will take it as I feel he wants to go home and I don’t know if visiting will be more relaxed. So the guilty feelings will start

@blubberyboo you shouldn't have to ask your siblingsthough, that's my gripe. Sorry, that's hard news to take about your dad-can you check if there's a hospice/wing nearby? They have more room for family & sometimes outside space to wheel a bed if suitable? I hope he's comfortable. My wishes for my mum are that she remains calm, comfortable & pain free. I hope your dad has this

To be fair one sibling lives far away and the other 2 do help with certain things that they are good at but I guess I’ve ended up as the main organiser. I got signed off work ages ago which has helped but also means I’m the one that deals with the professionals etc. I still feel stressed and now can’t really figure out a way to get back to work. Maybe I’ll just have to wait until it’s all over.

Yes that’s my wish for dad too although he says so little we never really know how he is feeling. I sense a bit of agitation in him these days but he won’t open up much to the mental health team. I think he is annoyed his body is letting him down and maybe he now knows he might never get to go home.
Separation from his family will make him unhappy too so that’s what I want to press upon the social workers when they assess him.

Hello, please can I join this thread.

My Dad has advanced prostate cancer, but has responded well to treatment so far.

I'm just marking my place for now, but I'll be back later to RTFT.

Sending love to all of you.

My Dad was diagnosed with prostate cancer 9 years ago and was told he was terminal 4 years ago, so he’s done bloody well, as have the NHS. This year has been hard, four trips to hospital with sepsis, a stay in a hospice, and sudden crashes followed by him being ‘ok’.

He was told 14 weeks ago he probably had no more than six weeks, but was told a few days ago he was doing so well Macmillian are going to take him off their books - but he is now on what feels like the edge of another crash (more pain, so more morphine, less appetite, and much sleepier).

I’m 300 miles away so it just feels impossible. I’ve taken time off work, have stayed there and in the last few months have been going up every three weeks. If Macmillan pull out I’ll have to take more time off, my employer is great but I feel like their sympathy is wearing thin. My sister is closer and has been incredible but she also works full time and has three children, two with chronic health issues. It is the endless uncertainty and my DM’s evident terror - it’s exhausting. I feel like I am not fully present anywhere, my DH, my DC, my employer, my friends, my DSIS and my DPs nobody is getting the best of me!