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.

Sending strength to everyone who is having difficult times, especially @buckeejit and @Winterfairy23.

We have been very fortunate and have been told no need for chemo or radio with my mother, so sounds as if the surgery has done the job. She would certainly not be strong enough for chemo so I really sympathise with those of you whose parents are going through this.
@Focalpoint, I read on here about carers who have prognosis shared with them even if the patient doesn’t want to know - I would imagine you need the patient to have consented to you being able to discuss them with their doctor.

Hi all & thanks for your supportive words @Fhortu

I wish there weren't so many of us going through this but it's such a help to have somewhere to vent. Sleep is one of the main factors for me to cope with all the crap. I'm so much less able when I don't get enough sleep, but it's often out of our control. I feel like a different person the last 2 days as I've managed to get some rest. Dh cleaned our bedroom & changed sheets & has lit a lovely candle for an hour before I go to bed which may or may not have helped, but the kind thought is comforting.

@Winterfairy23 siblings are such a struggle. Dm is bedridden now & eldest bro & his wife are there the most. Youngest who lives beside them is going away for the night on Saturday which I find a bit odd. He's hardly been there at all as he's been working so much. His wife has been in & out quite a bit though. Whatever your siblings do is out of your control-I'm finding it a struggle to get them to say when they can be present but have decided for this week just to do as much as I can as after the end, sorrow will be easier carried alone without the burden of guilt on top. So much of it is taking it day by day that I haven't even added my days to make dinner to the rota for the week after next. It feels too far ahead.

As for being strong enough for treatment, I honestly don't know. I totally put my trust in the experts when it comes to things like this as I know treatments can be so aggressive & diminish quality of life significantly, I'm glad it's never my decision what to do. I asked the consultant via my dad, 'if it was your wife/mother, what would you do?'

@Focalpoint I'd say the patient or main carer would be the one to ask-from what I know they often will say they don't know & it's like 'how long is a piece of string' however they are experts & if they know a tumour is aggressive they can estimate a time. My mum was given '3 months maybe'. That time is up tomorrow & I must admit I feel like I've been clockwatching since the prognosis. Some people might like not to know. I'm not one of them.

@LarkRize so glad you have had some good news on your dm

My dad was diagnosed with cancer at the end of may, he was given 3-6 months in June.
He has bowel cancer which has spread and lung cancer which I think is spreading now
He's been remarkable tbh, he was very fit to start with and this seems to have helped him.
He's starting to deteriorate now though.
He's been getting radiotherapy all this week on tumours in his lower back to help with leg pain. Tbh if you asked him why he was at the hospital he couldn't tell you , he just agrees to every suggestion from the Drs without actually thinking about whether its best for him or not. I questioned the amount of biopsies/scans etc he was getting in the hospital when we had been told he wouldn't be getting treatment and it was terminal. Though I can't fault his care really.
I'm exhausted, I've been doing everything and don't mind at all but my brother lives in England and seems to have forgotten how to catch a plane over (I'm in NI) .
My Mum has got very confused and isn't happy that there are nurses coming into see Dad. I had to tell her tonight they weren't there for her and she could go into another room.
Sending hugs to everyone going through this or grieving over a loss ❤️

@Cocolapew I'm sorry for what you're going through. I'm NI too & the system is totally fucked. If it weren't for Marie Curie coming for a morning visit every other day, we'd have sod all support. District nurses have been pretty shit & we've had to chase & beg for equipment. Chances of getting carers in place before dm dies is looking grim. District nurse said 2 days ago the Trust couldn't get any bedpans anywhere so we'd have to buy our own.

LarkRize, that's brilliant news. I'm so glad for you.

Cocolapew and Focalpoint

Im sorry to hear that you are struggling with the system @buckeejit, whereabouts are you? Im in Ards, so South Eastern trust and I've found everything to be good so far. A hospice nurse has been assigned to Dad and the district nurse comes in every Friday.
Tbh I think they do too much the amount of biopsies and scans hes had is unreal. Even he thought they were using him as a teaching lesson in the end. A couple of Fridays ago his hospice nurse phoned me and said that Dad had said his legs were sorer and more numb and I had to take him to the emergency department straight away in case his spine was being compressed.
We spent 6 hours waiting only to be told he needed an mri so to come back at 9am.
Spent all day Saturday in A&E, his spine was ok but his blood count was very low do they admitted him at 5pm. He was there until 8pm on Sunday when he got a bed on a ward.
He had a blood transfusion in A&E and there was no real reason for him to be on a ward, I picked him up on the Tuesday.
I think my Dad is saying that hes in pain etc because he wants to be thought of as brave and stoic iyswim? I don't mean that in a nasty way but he likes to be the best at everything and I don't think he realises the nurses aren't there to tell him how great he is but only to gauge his pain and his needs.
I know that probably makes me sound horrible .
He's back up at the City hospital today for radiotherapy which is taking so much out of him. He has to get hospital transport on Monday and Tuesday because I'll be at work so dear only knows how long he'll be stuck on that for.
I hope everyone has a peaceful day

I've just cancelled dads radiotherapy, Mum phoned to say he can hardly walk today and has deteriorated dramatically during the night

Oh no, sorry to hear that @Cocolapew

@Cocolapew I'm so sorry to hear about your dad's deterioration. He & you have been through the mill already last weekend with all that. The speed of decline is something I really struggle with. When my mum was first diagnosed my dad says at the hospital 'they were promising that much support & help you would nearly have thought they were going to come home with you' then when you actually need help at home, it's pretty scarce. We're Northern Trust & hospitals are bursting at the seams, seems to be the same with community care.

I totally understand what you mean about being seen as stoic with your dad & often think it must be really hard for healthcare patients to know what level of pain/discomfort a patient has. My mum would say she was fine if her head was hanging off. Have you carers coming in yet? I'd ask the district nurse/social worker to request ASAP if you think you will need them at any time. I hate Fridays as things shut down more at the weekend & it feels like help is even further away.

I wish there was someone to guide me on what to expect next. It's all very vague & after a wobbly evening last night I'm consumed with thoughts of how I'll know if I should need to call the doctor & also how to communicate to my 3 brothers if they need to come. Do I message the WhatsApp group & then ring them in order of age or distance first? It seems such a ridiculous thing to be thinking about but I'm a planner & want to make the right decisions-think I'm petrified of having regrets.

I've nothing to do while I'm sitting bedside & can't get focused to read, have lost my laptop charger so can't do any much needed work. Been reading the thread on here mostly for partners-'still the storm' & finding it somewhat of a comfort but just generally feel a bit lost.

Hope everyone has ok days & weekends ahead

@Cocolapew and @buckeejit - 💐 for you both

Thank you for all your good wishes.
I went round this morning and my dad was sitting in his chair with the reddest face ever, he obviously had a temperature. Then the Dr phoned about blood tests and got on to the fact that he was unwell.
She came up to see him and couldn't have been nicer. She arrived as the district nurse was there and their was a bit of argy bargy over who was going to be in charge of his prescriptions. The DN had just phoned the hospice Dr but the GP wanted to take over .
She spent ages talking to him and upped his pregablin and morphine by a good bit. We also sorted his DNR form . She also got us meds to keep in the house that a Dr or nurse might need if they are called out at night or the weekend.
Once my brother heard about the DNR he phoned to say he was coming over next week.
We don't have carers but my mum had to pull my dad up in bed so he could get to the toilet, she's way too frail to be doing this. If needs be I'll go and sleep around there to help at night, I literally live round the corner.
He told the Dr he doesn't want to go back into hospital and would prefer to be managed at home.
I have no idea about deterioration either, I'm presuming it will be quick once it starts, he's absolutely riddled with cancer, lungs, kidney,liver, bowel, bones, lymph nodes that we know of.
Hoping everyone has a good night and weekend

Sending all my best wishes to everyone on this thread.

I might need to join you next week. MIL (who had breast cancer a number of years ago) has been quite unwell recently, including unexplained weight loss) and is having a 'hunt the tumour' scan n a few days. She has a number of other health issues too, which are likely to complicate/limit treatment options

I'm acting like a perfect ostrich right now - I so much don't want to think about this. MIL and FIL have both become much more frail in the last couple of years, and are (possibly) showing some signs of dementia. We're too far away to be much practical help right now, but might have to look at options depending what they find. My youngest is still at school, which sharply limits what we can do during term time.

@Cocolapew sorting the DNR is awful. I had to do this for my dad a few years ago. It seems so unfair but it really is the kindest thing. You wouldn’t want your last memories to be of a resuscitation which can be pretty violent when the outcomes are already quite poor.

I’m glad the ‘just in case’ box has been sorted. Hopefully nothing will be needed too soon.

Sending the kindest wishes to you, your dad and all your loved ones.

Thanks @Winterfairy23, the GP mentioned how traumatic it can be seeing cpr being done on the family.
@Ethelswith

Thanks Coco - knowing there's a high chance something's badly wrong, but not knowing what it might be (and what can be done about it) is surprisingly stressful. DH is also doing an ostrich impression. I don't know how long after the scan she'll get the results. I'll update the thread idc

My DF died with (not of) his cancer some years ago (the cancer didn't help, though) My DMum is also frail, but mercifully no sign of cancer. However we needed to have the DNR convo for other reasons not so long ago. It's shit.

Best wishes to everyone and hoping you are coping tonight. @Cocolapew and @buckeejit just wanted to stay hi to you in particular as I'm also in NI.

My mum has been diagnosed as incurable, with secondary cancer and inoperable. She just finished radiotherapy and we are waiting to hear what is next. Half expecting them to say nothing.

Have got hospice nurse, district nurse and oncologist in the City. She hasn't been given a timeframe but is likely to ask.

Got a phonecall from mum at 9am to say my Dad fell last night and she found him lying in a pool of blood, after going to check why he hadn't come to bed.
She couldn't lift him and he couldn't get up so he crawled to the bedroom and they managed to get him into bed.
I was raging that she didn't phone me, me and Dh werent even in bed at that time and even if we were we could have been there in less than 5 minutes.
I went round and its more like a graze on his head, Mum and DD2 were going shopping so DH went round and sat with my Dad.
Apparently he was trying to walk without his stick ffs.

Hi @Focalpoint I hope your mum gets news soon, the waiting came be excruciating

@Cocolapew sorry to hear about your dad's decline. Ask for a slide sheet to help with
Moving in the bed-or but one of Amazon-likely to be quicker

I'm glad of our just in case box but the drugs are very low dose so I wonder if they'd really help. I've requested sleeping tablets for dm which seem to be helping, who knows.

@Ethelswith I'm sorry you're in this position. Not knowing is very difficult. I hope you get a diagnosis soon & can at least plan accordingly if it's not as positive as you hope.

I'm a total catastrophist so when my mum was given 3 months, it wasn't a total shock as I'd been mentally preparing for v bad news.

@Focalpoint I'm sorry to hear about your mum. What kind of cancer does she have & would she want to know how long she has? Even if she doesn't, she might allow you to know if you think you'd like to.

@Cocolapew my parents didn't want to worry the children with things deteriorating so kept issues & falls to themselves. Honestly they're worse than children-we couldn't trust them & are lucky there are 4 of us so being here is less of a burden than it would be for most. It's such a difficult position to be in though. I'm constantly trying to decide what to do for the best.

I can't believe how invested we are all in waiting for her to have a bowel movement. That's our current focus after nurse has been to administer an enema today!

I’m not sure this is the right thread for me, but maybe someone has ideas. I’m looking for advice for my late teen / early 20s children in supporting both me and their father - we both have cancer. The teenager lives at home with us, while the older one lives abroad. I’m not sure how much of this I can put on them, as they are young. At the moment, I am the main carer for their dad, but that situation can’t last long term.

I've heard more about my Dads bowel movements than I've ever wanted to know!
Back at the hospital. I went around after lunch and mum started to cry, she never cries. He's very confused and weak, I phoned OOH Dr who organised an ambulance for a head scan in case he's had a bleed after his fall.

Ethelswith*
Sorry to hear about your MIL. I hope the scan results aren't as bad as you fear. I was guilty of doing the ostrich act too. I think it's a protective thing, and that on some subconscious level you probably are processing what's going on.

teeshirt
Oh that must be so difficult. I've no children so don't feel I'm in a position to advise but hopefully someone else will have some suggestions.

So sorry tshirt I didn't see your post, hopefully someone with more knowledge than me can answer your question

@teeshirt I'm so sorry for you all. I don't really feel I can offer much in the way of advice, but the one thing I have appreciated is my dad continuing to "parent" me (I'm mid 30s so very different to your kids!) - offering advise on my job, letting me rant about my kids etc. Making sure that in the midst of this misery we're keeping that dynamic going has been comforting for both of us.

Tough day today, with bad news on how the treatment is going. I'm just so very tired of feeling sad.

I haven't been on this thread for a few weeks but I can't tell you how reassuring it is to know that my random rage isn't unusual (I've become a shouty parent and I hate it), that I'm not the only person who gets angry with old people who get to outlive DF and that others have to read themselves into a slumber so their brain doesn't go into overdrive. Im deeply ashamed to say that sometimes I even feel a tiny bit of relief when I hear about someone younger than DF dying, as if it alleviates some of his tragedy somewhat. Which is a shitty thing to admit, and not something I consciously do or take pleasure in.

I'm sorry you didn't get good news @Lotsofpots .
Dad had been admitted, his head was ok but he had a chest infection, he got home this evening.
I'm writing this from mum and dads spare bedroom, mum phoned at 1am to say he had fallen again. DH got him back into bed and Ive stayed in case he tries to get up again.
Its exhausting not knowing what's going to happen next . My brother is finally flying over tomorrow night.
and for everyone