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.

Hello. I don’t know if anybody here has any experience they can help with.
my mum was diagnosed with stage 4 ovarian cancer last year, in December we discovered it had metastasised into her peritoneum when she was hospitalised with a partial obstruction. She came home but has been eating like a sparrow for months. She was hospitalised again 3 weeks ago with another obstruction which ultimately took 2 weeks to clear (they took the first NG tube out too early) so she’s been nil by mouth for two weeks and has deteriorated rapidly. Her legs are swollen, the doc says this is due to low albumin levels as she’s unable to eat.
we then discovered it has spread to her brain. We were waiting on the results of the MDT meeting on Wednesday expecting a plan of action, which turned out to be ‘the neuro wants to see her as an outpatient in 2 weeks’. That was it.
palliative team now involved and encouraging her to eat tiny amounts of soft sloppy food, but the issue we have is that she cannot stand or walk, she is so week and her legs are painful yet they want to send her home.
my dad is panicking about not being able to look after her, my mum is distressed because she’s still very poorly but being sent home. Nobody has said to her that she is nearing the end of life, we have been told if she can get strong enough they will look at restarting her chemo to control the cancer.
I bagged the senior nurse outside her room the other day, who basically said if she obstructs again we are scuppered. I don’t see how she won’t obstruct again if the tumour is wrapped around her small bowel.
i just look at what’s going on and think she probably only has weeks, but nobody is telling us that :(
genuinely just don’t know how to help them other than to try to find solutions to the barriers they are putting up about her coming home :(

I'm sorry @puffylovett that all sounds horrible and difficult. How old is your mum? I suggest giving the palliative care team a ring and telling them that your dad feels he can't give her the right care at home and ask what the next steps are? It sounds like much more support is needed but you'll probably need to push for it. Sorry you're in this position.

So sorry puffylovett -yes my mum had OC and was also too weak to stand at the end. At that point we got a hospice space that was a huge help but I would say if her appetite has reduced you may well be in the last week/s of her life I am afraid so I would push for a hospice place and try and be with her as much as you can. Ice lollies, yogurt ones, mashed potatoey fish pies with protein may provide a little sustenance. It is very hard to watch your mum in such discomfort and to be limited in what you can do to limit their suffering. Express all your love to her now whilst she is still able to hear it because once in hospice care the syringe driver really puts people into a deep sleep. Oh it is so hard, I send you a big hug.

Thank you so much for your replies. Dad went to see her yesterday and she was back to the stage of barely speaking :(
she desperately doesn’t want to go to a hospice. They both associate that with end of life and neither of them think she is quite at that stage yet!

certainly nobody has actually said that to them. Just that if she gets stronger she can go back to chemo. I don’t see how that can happen, I really don’t :(
My dad just feels the need to be ‘trained’ in how to use the equipment, I think it’s totally a confidence thing and it’s overwhelming him - he’s nearly 80 so it’s a huge step really to go from caring for mum who for the last 18 months could just about get around, to all of a sudden feeling pushed into taking on the care of someone who is completely bedridden. It’s so hard :(
this limbo state is just awful :(

@puffylovett she wouldn't be discharged to a hospice unless they are sure she is 'actively' dying anyway, the rules are very strict about that. If she is fit to be discharged from hospital there will be a discussion about the terms of her discharge. So for example my dad was very ill but not quite 'end of life' yet so he had a 'fast track' discharge with 'continuing healthcare' where a hospital bed and commode was swiftly delivered home and carers were arranged to start a week or so later. You can ask for that but if your dad can't cope alone then you can refuse for her to be discharged until the full package of care is in place at home. My mum is only 70 and could barely cope with my dad so I completely understand. It is utterly awful.

They’ve been out and done the initial assessment and the occupational therapist called dad yesterday and said she has to be in a hospital bed as she had no energy to stand and he needed to clear the room for delivery. He is being given a wheelie commode and a crane thing for her and I gather we will have careers 4 times a day. He was most put out when he discovered he may have to wheel her around the house ‘on the bog’!
ive had to have a big chat with them both about their expectations and adjustments that will need to be made.
We haven’t been given any terms of discharge or anything, but I’m assured by the palliative team there will be support in place. It’s such a scary place to be and so utterly sad :(

Puffylovett, it is so incredibly sad but try and focus on bringing comfort to both your parents at this time and think how some people do not have a loving child there to do what you are doing. It is inescapably sad though seeing your beloved parents suffering, just express your love now whilst you can. I miss my mum so much and it is so hard she is gone and I cannot express my love for her anymore.

I'm so sorry @puffylovett - that sounds really tough for all of you.

I've been able to put my dads potential diagnosis out of my mind for a while as he's completely fine and has been continuing life as normal. However he has his appointment on Thursday so we will then know what we're dealing with and my brain is going crazy with possibly outcomes. I'm also googling which I know is the worst thing to do, especially as I have next to no details to go on. Dad doesn't want me to go with him so I won't be able to ask all my questions directly unfortunately

@puffylovett the hospice my Dad went into actually does very little end of life these days, it's used primarily for respite care and symptom management as the Doctors are so specialised (this was a cancer specialist centre).

My Dad went into one for nearly 4 weeks, and they were fantastic with him (even though he wasn't happy to go in to start with). They tempted him with home cooked food (everything was so high calorie and bird sized portions) and tried 3 or 4 different medications to ease his symptoms and manage his pain. Dad was told that it was to get his strength back, and for a brief period of respite, it did. He cried when he was discharged and desperately wanted to stay there. I would try and sell it from this angle to your parents, and it'll give you some breathing space to get equipment sorted at home.

Sorry @puffylovett I may have given you wrong info there about hospices, apologies. Thanks to @Badger1970 for correcting

I wish my dad HAD been offered hospice care because he died in hospital alone in the night in the end

@inspacenoonecanhearyouscream I’m so sorry to hear about your dad. It’s heartbreaking isn’t it. Sadly we didn’t get mum in to a hospice or home in time, she died on Monday in that stark hospital environment :( devastated. The only blessing is my dad and I were with her, but there was a stark contrast between her death and my recent father in laws who died in a wonderful hospice :(
im feeling ever so slightly traumatised by it, but so thankful that we were able to be with her.

Sorry to hear that @puffylovett but glad you could both be with her

@puffylovett I'm so sorry.

Can I join you all please?

My Mother died last Spring. Her ovarian cancer had been missed again & again until it was Stage 4 & everywhere. She died a horrible death as well (after being sent home with no care package & falling out of bed & lying for hours on floor).

My Partner of 32 years died last Spring. Stage 4 Bladder Cancer. A 'better' death but I am absolutely devastated. He left his remains to medical science. The annual service of thanksgiving was last week so that was helpful to attend however his remains are still being used as teaching materials so will not be released as cremated remains for a year (or poss 2) His wishes, but very hard.

My Adoptive Mother has just been diagnosed with breast cancer.
She has surgery at the end of the month whence they will be able to see if it has travelled in to her lymph nodes & also to decide what drug treatment to start.

I've 2 teenagers with Autism who take time so I won't be able to post regularly or offer as much to other posters as I'd like but I'd like to 'be here' if that's okay? (I live rurally & there are no support groups locally & I'm rather islolated in RL)

So sorry @puffylovett, but glad that you and your dad were with her.

Welcome @medianewbie , what an awful stressful time you’ve had, you must be reeling. I hope your adoptive mum gets good news.

As a medic, can I just say how grateful we were during training to the brave people who gave their bodies to medical science and to their families, who had to wait to say their final goodbyes. I still remember the memorial service for them in London. to you.

Hi, I'm new to the thread. So sorry that any of us find out serves here.

My DM has been diagnosed with kidney cancer that has spread to the bones.

It's been a very complicated situation after her femur broker where a tumor was.

She's due to start immunotherapy soon.

She has been completely traumatised by the prolonged hospital stay.

Has anyone else's parent been left mentally broken by diagnosis and coping with the symptoms of cancer? We don't seem to be able to help whatever we try.

Hi @FrogtheDog, welcome to the thread no-one wants to join. Sorry about your poor mum. Sounds horrible. How old is she- does she have a partner? Do you or other siblings live nearby?

She's 75. But you wouldn't have known it before this. She was so active.

She has my Dad, he's exhausted, and my brothers live locally. So she has good support.

@cathyandclare Thank you for saying that. I must admit I found it very hard. He always said he wanted to do this (his Father did before him) but I couldn't initially stand the thought of strangers touching him, yet alone groups of young students over a period of 1-3 years (I was in Halls many years ago with a bunch of 1st yr medics & I didn't think they were very respectful the way they spoke). But, his wishes were what mattered & I came around to the idea. The Service was nice, yes, & I do understand that one body can teach so many, & that teaching is passed on too so it is really invaluable & far reaching. He would have liked that.
I guess it is like any funeral in that way, but perhaps more intensely so. The wishes of the deceased come first, but it helps if the family can cope with them.
I've learned more about it, & come around to it to the extent I am considering for myself now (depending how my children feel about it) Thanks again x

@FrogtheDog my dad was also 75 when he was diagnosed with metastatic cholangiocarcinoma. 6 months prior to that he'd still been working as a farmer and landscape gardener. . It's shit.

@InSpaceNooneCanHearYouScream yes, it really, really is.

@FrogtheDog my mum found it so hard. When she was first diagnosed, they were told to lock down so we didn’t see them for months. Then at the end, she had a prolonged 5 week hospital stay basically starving to death due to an obstruction and she became mentally very very miserable and depressed. The palliative care team were very good at keeping an eye on her and trying to keep her spirits up, but ultimately it was just shit :(
regular visits and little foot massages were all we could do, and only then when she would let us.

I am so sorry to all on this thread. I posted some months back about my Dad and his lung cancer diagnosis. He was then told (apparently) that he didn't have cancer before being told he did once more. Stage 4 apparently. Mum is very overwhelmed by it all and her default when things get too much is just to stop thinking or talking about things. She doesn't really know what the diagnosis is or what the prognosis is. She would like me to deal with it all but sadly I live at the other end of the country. She has my brother nearby but in her words, it didn't occur to her to ask my bro to come to appointments etc with her. They've had some very shoddy care from the local teams sadly, the staffing levels are at rock bottom. I don't know why I'm posting other than to get some of my thoughts out. I get frustrated because Mum won't do a single thing to make herself feel better - like writing things down, or making plans or talking about her feelings etc. She is so stubborn. Dad is pretty stoic but communication can be tricky as he had a life altering stroke in 2020 and has had several little ones since which has left him with speech aphasia as well. It's all just totally rubbish.

You are all in my thoughts. I often don't have anything practical to add...but know that I am tyring to express solidarity.