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Thread for those who have a parent with cancer?

974 replies

Fhortu · 25/08/2021 13:50

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.

OP posts:
Tomeeornottomee · 14/01/2022 08:54

Well this is shit. Mum has had 1 chemo and 4 radiotherapy sessions this week. The nausea and vomiting and shivering started on Wednesday and she sounds so weak and tired. I’m seeing her tomorrow. She doesn’t want to see anyone on a therapy day. I’m ashamed to say I’m scared of seeing her. I’m worried that I won’t be able to keep it together and I’ll upset her. Im frightened and I can’t explain why. I’m also freaking out because I’ve lost someone every 10 years for the last 3 decades 1992,2002,2012. DH says I’m overthinking (no, really?) and right now everything he says irritates the hell out of me. I’ve been having funeral dreams. Not mums funeral just being at funerals... 3 times in last 2 weeks. And they are so vivid. Especially the flowers. And now mum has started talking about sorting her finances out and making sure her bank accounts have sufficient cash in them to pay for things “if the worst happens” and she’s not even a full week into her treatment. I get that she’s trying to be organised now just in case she gets too ill or tired to sort it out later but it’s just so distressing. Then I feel guilty because it’s not me going through it. I hate this.

Lushmetender · 14/01/2022 11:48

Sorry to hear tomee. My dad has decided to skip chemo because he doesn’t want the messing when it’s unlikely to do anything for him. If this however gives your mum any chance for extra years and/or cure then it’s a necessary evil. Getting affairs into order gives them a focus of something to do and peace of mind and important that you listen. It’s ok to be upset together than bottle it up. Sadly I lost my mother mid December and DF got final diagnosis re terminal cancer the same day. All I could think of was death and no relief from any grief until my father passes but then I thought - he’s not dead yet! So he’s dotting between his place and mine doing his thing. Spending time be and discussing stuff. I don’t know what future holds but taking it day by day! Try not to overthink and get lots of rest!

DwightShrutesgirlfriend · 14/01/2022 12:38

So sorry, @Tomeeornottomee. I totally get your anger with your husband, I feel really angry at the moment and I know my husband is bearing the brunt. Hope you have a good visit with your mum.

Tomeeornottomee · 15/01/2022 17:05

@Lushmetender thank you. And I’m so sorry for your loss and your dads diagnosis @DwightShrutesgirlfriend thank you, i feel awful that I’m being such a bitch to DH and he’s being so supportive and just letting it all roll over him. How’s your mum doing after her biopsy? Hope she managed to get through it without too much stress. Being frightened of hospitals must be awful in her situation. I feel awful for her 💐 for your mum.
Today went ok. Had a bit of a moment before I left and cried all over the lasagne I made for when I got home. Felt brittle at mums, trying to be super cheerful and optimistic and inside I’m shrieking like a banshee. She is talking about her cancer as if it’s some sort of virus that she needs to get over... whilst at the same time googling funeral plans and instructing me how to divide her bank accounts between my kids 😱 we did have a lovely afternoon together, chatting about everything and nothing but she got tired after a couple of hours. Cried before I was at my car. Cried on way home, cried in car outside house. DH came out and brought me in. Cried all over his clean jumper. Then felt guilty about being horrible to him. Cried some more. Ate tear flavoured lasagne. I actually feel less angry. I think I’ve been bottling everything up and all the crying today has uncorked me. I am no longer emotionally constipated. For now. DH just surprised me with chocolate cake. I loves him I do.
Hope you’re all having a peaceful weekend. I’m off to eat cake 🧁

Wallawallakoala · 15/01/2022 23:13

@Tomeeornottomee I'm sorry, that is so hard. It's just unfair and so shit and a complete rollercoaster x

DwightShrutesgirlfriend · 15/01/2022 23:17

@Tomeeornottomee thank you for asking. She got through her biopsy, I practically had to drag her into clinic, the covid man on the door started to tell me I couldn't go in then he saw the look on my face and let me pass! We will have an appointment next week with oncologist to determine if there is palliative treatment available. I'm dreading it. Just want to be on my own at the moment, which is why I'm still up when everyone else is in bed.

Tomeeornottomee · 16/01/2022 15:20

Oh bless her, she must have been petrified, but at least she went and I’m guessing the covid doorman’s self preservation instinct kicked in...

mylittlepeanut · 16/01/2022 18:37

Gutted to have to join this group… almost 2yrs ago my mum was diagnosed with stage 1 uterus cancer had a hysterectomy and was discharged with no further treatment required. At the end of November she was referred to the colon cancer team under the 2wk waiting list… her uterus cancer wasn’t cured and she now has a walnut size tumour on her rectum and 3 lesions on her lungs therefore stage 4. She started chemo last week and I feel completely useless living 5hrs away. Any practical tips on feeling like I can help whilst living away?

Tomeeornottomee · 17/01/2022 09:30

@mylittlepeanut I am so sorry, that must be so hard for your poor mum. All I can suggest is regular calls, ask your mum if she’s comfortable with you talking with her medical team so you can stay up to date with what’s happening? Take each day as it comes and try not to feel guilty 💐💐

ashorterday · 17/01/2022 09:52

Hi - I've actually started a thread myself but it hasn't gained much traction.

DF is really struggling emotionally after several months of chemo (as an inpatient most of the time) and was admitted again last week with covid and an infection.

He's crying when we call him, he said he's sick of texts asking how he's feeling (the answer is shit) and he's got no "positive thoughts" left. In addition to his own health struggles he's lost his mother, brother and my mum in the last year, so it's no wonder he's depressed.

How have you supported your parents if they've been like this? It's hard to know what to say and how to support him. We are hoping he will be let out this week, I don't think he can take much more of being in hospital.

Tomeeornottomee · 17/01/2022 15:35

@ashorterday I’m so sorry for your recent losses and that you’re dad is so ill. Hopefully he’ll feel less despondent once he’s out of the hospital. Take care of yourself so you can take care of him (hug)

DwightShrutesgirlfriend · 17/01/2022 15:39

@ashorterday, it's so hard to keep upbeat when you feel down yourself, isn't it? Have you thought about asking people to channel their questions through you so that your dad doesn't feel he has to respond? I visited all my Mum's siblings last week to tell them of her diagnosis and I told them not to be offended if she did not respond, and that I would happily give them updates if they contact me. This seems to have taken a little bit of pressure off my Mum.

ashorterday · 17/01/2022 17:14

[quote DwightShrutesgirlfriend]@ashorterday, it's so hard to keep upbeat when you feel down yourself, isn't it? Have you thought about asking people to channel their questions through you so that your dad doesn't feel he has to respond? I visited all my Mum's siblings last week to tell them of her diagnosis and I told them not to be offended if she did not respond, and that I would happily give them updates if they contact me. This seems to have taken a little bit of pressure off my Mum.[/quote]
We have asked other relatives/friends to go through us now, but there's still 3 siblings plus partners (we are a close family so the partners love him too) and they all want to speak to him but we've stopped texting now and just speak on the phone.

We just feel so helpless and we are running out of positive vibes ourselves.

FoofOfTheWalkingDead · 17/01/2022 20:56

I've been lurking here for a wee while now. My condolences and thoughts are with all of you who have lost a parent or whose parent is ill.

My mom got diagnosed with endometrial cancer in October 2020, hysterectomy in January 21 and then radiation. She didn't even make it to her 6 month check up before she was admitted with a bowel blockage. They started chemo right away but she had nodules all over her peritoneum and a big one obstructing her bowel so they removed those surgically. We thought that was the end of the tumours but not even 3 months down the line it has spread to her liver and they now think she might have another bowel blockage. My poor mum has only managed 2 chemo cycles in 4 months because she's been so unwell. Her surgical site abcessed with a staph infection and now she's got covid. She's so weak, she can't walk anymore. They are now saying it's about managing her cancer because it's not curable. She's in so much pain unless she's drugged to the eyeballs and she's very confused. She's isolated on her ward and is so scared and lonely.

I'm not in the same country as her. My sister is there to look out for her and she's doing a wonderful job. I feel so guilty for not being there to help her. I got a month off in October to visit her and it was so hard but also so good. We've spoken on the phone almost every day over lockdown and since diagnosis but she's now too weak, tired and confused to use her phone. I only get updates from my sister.

The drs aren't giving us much info on possible outcomes and it's so frustrating. I don't know whether to travel over now or to wait until later but I'm scared it might be too late. Covid makes air travel doubly difficult and I'm panicking that we'll all get shut down again.

I'm a wreck, not sleeping very well and feeling really depressed. I'm 46 with a DH and DS and loads of friends and family but I'm scared to think what life will be like without my mom.

Tomeeornottomee · 18/01/2022 09:23

@FoofOfTheWalkingDead sorry your mum is going through this. It must be awful being abroad and not knowing whether it will be safe enough for you to visit your mum without getting stuck in a lockdown.
I’m stuck in a loop of optimism-pessimism-hope-despair. The only thing keeping me going mentally is my DH & kids (both adults).
Use your support network. They love you and will want to be there for you. 💐

puffylovett · 18/01/2022 11:02

Feel for you @foofofthewalkingdead :( it must be so hard being so far away from your mum and with covid not knowing what to do for the best. Maybe you should bite the bullet and come now for as long as you can? Try and bank some time with her?
Mine is only around the corner and right at the beginning of her diagnosis.. I haven’t seen her since before Xmas and am desperate to. Had our first text from her today, they’ve drained over 3.5L of ascites fluid from her abdomen but I am so scared of what that actually means - I gather it’s not usually a good prognosis. She has either ovarian or peritoneal cancer. We are waiting on biopsy results. Have spent all weekend in floods of years on the phone to my sister. The hardest thing is the enforced isolation - they won’t see us because of covid :(

FoofOfTheWalkingDead · 18/01/2022 16:09

thank you @Tomeeornottomee. I know what you mean about the loop. It's been a rollercoaster of ups and downs and I'm already exhausted but there is still so much more to come. I'm going to see a friend for coffee tomorrow. I've been tending to stay away from social media or any other interaction with friends because I don't want to bring anyone down but I will need to start letting them in.

That must be so hard @puffylovett, to be so close yet unable to see her. I've been in the UK for 20 years and have gotten used to not seeing my mom regularly. I do miss our skype calls though. I would call her while I was cooking dinner and she would be eating her lunch and we could just gab away like she was in the room.

I'm being allowed to work from home to avoid having to be exposed more than necessary to COVID just in case I need to travel over right away. I work in a university and can safely say that undergrads are the equivalent of plague rats, especially as they've all just come back from Christmas holidays with a whole bunch of new germs. The plan is to book a flight for the end of February but I'm prepared to go at a moment's notice if I need to.

Thank you so much for replying.

Lushmetender · 18/01/2022 17:21

Interesting what you say about relatives. How would you deal with this one. My mum died and I told her sister. She claims she heard it via social media! She’s agoraphobic and has not left the house in years or ever visited us (we used to go down a lot but always us doing the visiting). Unfortunately she texts constantly and is very insecure and asks us why we aren’t replying (literally she texts all the time and I am not a big texter: work full time and have kids etc). She keeps asking how my dad is but never phones home. He doesn’t want her to know he is terminally ill as she’s be on the phone all the time. Yet if I text back I get millions on texts back but it’s all about her because she doesn’t do much or have any hobbies. My dad says to block her completely but I don’t want to be that horrible.

DwightShrutesgirlfriend · 18/01/2022 18:30

@Lushmetender there are some people in the world who turn everything around to themselves and they are a real drain when you're dealing with all the stuff you have going on. If you're feeling kind, I would explain that you need to concentrate on work and will answer her texts when you can, but not necessarily immediately. Then I would turn off notifications from her and only look at them when you are feeling strong enough. Your needs matter too.

FoofOfTheWalkingDead · 18/01/2022 22:27

My sister just called. The doctors have said that my poor mom could go any time and that she's had a massively steep decline in the last few days. So I'm booked on a flight out in 2 days and now just hoping I make it there before she goes. I can't believe it, it spread so fast.
Big hugs to everyone going through this.

puffylovett · 18/01/2022 23:58

Oh @foof : so sorry to hear that. Fingers crossed you make it back in time to spend a little time with her Flowers

littlemefi · 19/01/2022 05:26

My brother who lives overseas has just booked to come over for a month to spend time with Dad.
My other brother and I have encouraged him to come over sooner to spend time with dad now while dad is still reasonably good.
I think he will be shocked at how frail my dad has become; I think we've got used to it almost.
Meant to be hearing from oncology team this week and the oncology nurse has said that she will do referral to McMillan nurse etc which will be something.
Hugs and kind thoughts to all of us going through this xxx

Lushmetender · 19/01/2022 23:39

Hope everyone is doing well. My dad went home today after a couple of nights here but he said he was uncomfortable in the night and slept till 4am. Pancreatic cancer which has spread - said he had like a cramping feeling! V hard! Don’t want him to suffer yet want him to be around as long as possible- hopefully get some spring sunshine but is v sad. My husband was digging out photos for his friends significant birthday and there photos of us all on holiday. Makes me realise how much time has passed and how much we did together. Stopped looking at them as too painful right now! We’ll need to conserve energy. Trying to get good nights sleeps as think next few months will be hard and quite draining!

LemonViolet · 20/01/2022 21:28

Good evening all. Sadly I have to join you. My mum was diagnosed yesterday with a “metastatic nodal mass” in her abdomen, she had her first phone appointment with an oncology nurse today and tomorrow has a phone consultation with an oncologist on what they do next, they’re talking about biopsy and chemo. It was found on CT, her only symptom has been crippling leg pain, and they found nothing else, just this one ugly big mass. She is very fit in her 60s, plays tennis, cycles etc until very recently. It’s all a mystery so right now don’t know whether prognosis is dire or more optimistic until we know more about what this mass is. Possibly some kind of lymphoma or otherwise “unknown primary”. But the fact things are happening very quickly makes me think they are taking this very seriously.

I also live 4hrs away @mylittlepeanut so whilst I’m new at this same boat so solidarity. Not quite sure what to do. Am going to visit this weekend and booked every other Friday off for a while to have long weekends to spend up there.

HeadPain · 21/01/2022 00:38

Any advice on how we can communicate better with my dad or at least what should we do/how can we respond to him when he talks/asks questions but he doesn't make ANY sense and he gets agitated (including shouting) because we don't understand what he's trying to ask or the things he's trying to tell us! It's very distressing for him, and us. He has brain mets. Apparently his treatment has stopped working and they've progressed and that's what's causing this. I don't know how long he may have. Not clear. But it sounds very bad, if they're right about the CT scan. He's in hospital at the moment. Meeting with Oncologist on Tuesday. This is fucking horrible. It's quite unbelievable that this is all happening so suddenly after we had such good results of tumours shrinking and oncology were pleased and they didn't expect this so soon after the good scan results. My mum said "yes" to one of my dad's questions that made no sense, he said "yes??!?!!" seemed very shocked. I told her not to say "yes" when she doesn't have a clue what she's saying "yes" to. But it's hard to know what to say. She didn't want to ignore him. We've tried saying "I don't know", "hmm", "ah", "ok", "don't worry", "I love you", trying to guess what he meant and answering, talking about something else, holding his hand, rubbing his arm, hugging him, putting hand on his forehead, changing subject/focus of attention, telling him we don't know what he means, just staring at him and not having a clue what to say! Etc. He repeats and gets frustrated and angry if we don't answer or if we say we don't understand. I'm sure he's scared too. He said before that he's scared. It's not even real words a lot of the time now. On one occasion I repeated his nonsense sentence back to him (which I shouldn't have), like asking if that's what he said, and he said "yes" like I was right and like it made total sense. It was total nonsense. Also, when talking to him he mostly just repeats what we say, or says nonsense back, sometimes I can tell/guess what he means, other times not, sometimes he makes complete sense but this is rare now, well it was today anyway. Dexamethasone made all this shit go away in the past, but it's not helping this time. Or maybe I forgot how long it takes (how long should it take if dex will help it?). But actually, this time these issues with speaking started after he started the dexamethasone (was given for something else), apparently this can be caused by dex. Idk. Also, as well as it being very hard not being able to communicate at this time, and it causing him distress, it's also hard and worrying because he can't communicate how he's feeling to get the help he needs for symptoms or basic care. He looks in distress sometimes and we ask him if he's ok, asking him does he have headache (while touching his head), is he hot/cold, does he feel sick/have pain (while we touch areas he may have pain), does he need toilet. I think he says the wrong answers too sometimes. He has been saying/doing opposite, so I'm worried he's saying "no" when it's actually "yes", as it appears the answer should be yes. We can only try to help when we're at the hospital, which is not 24/7. Unfortunately I am very anxious about the care he's getting at the moment. This is all from a fucking mole turned into malignant melanoma he had removed around 16 years ago. Removed then with no need for anything else except a wider excision at the site. Then last year, bam, it's all over his brain and other organs, we never knew this could happen from so long ago but apparently it can. Since last July we were told this would not be cured now but we hoped for longer time (and were basically told so recently). Some people live a long time with this, depends which treatments they're given and each person is unique in their response. Anyway I've blabbed off topic. I needed help with communication.