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.

No, Dad's only seen one Dr who dropped this bombshell on him. He's so confused that we'd asked for family to be present at any consultations, but it's like banging your head against a brick wall. He's been on 3 different wards in 7 days and the continuity of care is very lacking. I'm going to contact PALS today to see if something can be added to his notes that he's not understanding or remembering what he's been told.

He did seem to think that they were going to be having a meeting at some point this week to see what treatment options were going to be an option. I'm very concerned that it's advanced as he's got ascites (fluid in his abdomen) but thankfully isn't in any pain.

I'm sorry for your situation.
Having had recent experience of being in your situation, there was a multi disciplinary meeting between consultants/specialists to discuss and agree on treatment going forward. A few days after that, we then had a meeting with the specialist nurse who explained everything that had been decided. We found ours extremely helpful, with regards to explaining everything, including support for the patient, the family, financial help and occupational aids etc.

How is everyone. Hope things are calm for you all. Such a roller coaster of emotions going on wanting peace for my dad but for us not to be facing his demise. We are still waiting for a treatment plan 8 weeks on. What time we have is slipping by.

Sorry to hear you are still waiting @unicornsarereal72 - my mum only has a few days left, the nurses were concerned about her breathing changes yesterday but breathing is stabilised again today.

It's just awful, she can barely talk, she is sleeping 90% of the time - there is nothing left of her and now is just a waiting game.

Also had my 20 week anomaly scan today and I have been referred to a cardiologist as the sonographer reported my baby's aorta seems enlarged 😭

Hope your dad gets some answers soon 🤞🏼

@navigatingmy20s what a difficult few days you are having. I'm so sorry you are in this position. I have everything crossed that your baby is ok and will continue to grow strong.

Thanks so much @unicornsarereal72

Dad went to oncology today. No treatment, as they don't feel he's strong enough to cope with it. He was very much in denial, and refused any talk of time scales etc. It was awful beyond words, seeing so many young people there for treatment. I feel horribly sad about Dad and can't bear the thought of losing him, but he's 82 and lived his life.

They asked him to go back in 4 weeks so they can offer some support from the enhanced care team. I hope he'll agree to go

@Badger1970 what a difficult and sad day for you. I hope you can take some comfort your dad has lived a long life. If you want some more information we found the cancer team nurse really helpful and will give us a lot of information you are in my thoughts

We have had a challenging week. Dad has had 2 hospital admissions. He has got old and frail very quickly in the last few weeks. And life is complicated by some financial affairs he is desperately trying to resolve. Causing the whole family more stress

On the plus side he had an operation today to remove the brain tumour. This isn't going to change his outcome but will hopefully take away some symptoms. Once he has recovered we are hoping he will be strong enough for chemo but of course that has its side effects so this is how it is going to be I fear. Hospitals and deteriorating health.

Big hugs to everyone here.

@unicornsarereal72 thank you for your kind words.

This is all so unreal, and I honestly don't think I've ever felt so mentally drained. And we're at the beginning of this journey.... although I don't think it will be a long one.

I hope your Dad's surgery went well.

@Badger1970 It is surreal situation. I thought I would just crumble but I seem to be keeping things together so far. although we have little choice in that. Just take each day as it come. And make the most of this time we have. As the queen said I believe. With great love comes deep grief.

It's mad isn't it how you just sort of have to carry on. Kids need picking up from school, you hold.it together, tea needs making, you hold it together, work etc. I had a bit of a wobble today but my DC are so small they just need me to be their mum, but I really need mine!

After an unsuccessful op we are waiting for a treatment plan. So so long after initial diagnosis still don't really know where we are up to. Feel so sorry for my poor mum having to deal with this living alone I just hope she leans on us when she needs to.

Hello
My darling Dad (77) has just been diagnosed with oesophageal adenocarcinoma T3N1M0 after endoscopy, biopsy, CT and PET scan.
He’s been seen privately so far through BUPA and I am trying to convince him to ask to be referred to the Leeds Cancer Centre/ Bexley Wing of St James/ Nova healthcare. At the moment his care plan is NHS at Bradford Royal Infirmary.
Any experience?
At the moment we are hoping for curative rather than palliative care, based on the MDT at Bradford last week. It will involve chemo and then a huge operation.
I can’t sleep, I keep worrying. Constant headache (me not him!). I love him so much and don’t want him to go yet, but most of all I don’t want him to suffer.

@Bickles I hope you get the news you want going forward. And you get to have some time with Your dad.

Just wondered how everyone is balancing their time. Since my dads diagnosis has have been to see him every weekend for one reason or another. This is the first weekend things are calm at my dads and I'm home to catch-up with things and spend some quality time with the kids

But now I feel guilty. He is deteriorating fast 8 weeks from first diagnosis to now using a wheelchair. He may or may not be around at Christmas. So I want to spend what time we have to see him and help where I can. But also I work full time alone parent and it's. 100 miles round trip.

Is anyone struggling to balance things. I keep thinking I'm doing what I can but also know it won't be a choice soon he won't be here to go and be with.

Hey everyone.
I've been checking in on the thread but not really had much to add.
Dad had second bout of immunotherapy and chemos.
Sickness this time seemed less, but the pain was a lot worse. To the the point that he had to speak to the nurses as he was beside himself with pain.
His consultant saw him and said it's a reaction but it should lessen with each treatment.
@unicornsarereal72 Balancing my time isn't going well. Dad has his own business which he is determined to keep going. I used to help with admin at weekends anyway, but it just seems more now.
He doesn't want it give it up which I understand but at the same time, I'm not sure it is worth it.
He shouted at me last week which he has never done before. I know he's in pain and it is hard for him.
I think I'm just getting a bit stressed by it all because my secondment at work will be coming to end at the end of the year and I feel I'm not doing the best that I need to be. I love my role and would hate to lose it.
Trying to renovate our new home too.
It is so hard isn't it? Thinking of you and everyone else too.

My Dad is going downhill at a rate of knots, and I had a panicked few hours on the phone yesterday trying to get some help. In the end, I tearfully spoke to someone in the Oncology department who booked me a phone consultation next week with the palliative care team as Dad's next appointment wasn't for 6 weeks and I honestly can't even see him making that let alone Christmas The lovely lady who listened to my wailing also got the Consultant to contact Dad's GP who came out yesterday afternoon and gave some reassurance as to what's normal for cancer and what isn't.

Dad isn't eating or drinking, has chronic diarrhoea and is so weak/frail that my sister and I are having to visit about 5/6 times a day between us and we're both running on empty. They haven't had time to sort out a care package and given that my DD works in adult social care, she's warned me that they may not do so in enough time.
He's literally 3 weeks post diagnosis and it looks like his liver is failing rapidly.
Cancer is a bastard, isn't it. I'm not eating myself, or sleeping and feel as if I'm permanently about to burst into tears.

@Badger1970 I'm so sorry to hear what you are going through. It is taking people so quickly it seems. I read here the initial steroids will give you a temporary reprieve but it will go down hill after that. We had a lovely summer with my dad in the beach and bbq. I hope the kids remember that rather than seeing him wasting away
@ButnotforLola yes my dad is trying to organise his affairs and move move into investments so his wife will continue to have a comfortable retirement he is very grumpy and short with all of us I know he is angry. In pain and scared. It is good you and your sister can be so supportive. I'm sure he is very grateful and loved you both very much
Hugs to everyone here.

@unicornsarereal72 I'm really struggling with the balance, my dd has just started school and needs me now more than ever, my DS is turning 1 and I feel like he's growing up so fast my head isn't in the right place to just enjoy the moment. I feel constantly guilty for not being with my mum more than just taking her to treatment but it's far away and it's hard. I try and call her everyday but feel like time is slipping away and I'm not managing to do anything. My house is an absolute tip and I'm struggling keeping on top of anything to be honest.

@Wallawallakoala I'm sorry to hear you are struggling too. I feel I've finally got a balance my sister and I go every other weekend but then I feel like I should go and spend time with him because we don't know how much longer we have.

Dad starts radiotherapy next week. I don't know if any treatment is going to help or just slow down his wasting away. I've restarted my anti depressants so at least for now I've stopped crying all the time. I knew I was in a sweet spot enjoying time with my children and having healthy parents too. I just hoped we had a few more years before they suffered with their health

How is everyone else doing

Hi all, not been on here for awhile.

@navigatingmy20s So sorry to hear of the difficult time you must be going through, with your mother, and the anomaly scan. Sending you lots of positive vibes particularly in relation to your baby.

@ButnotforLola My DM is having immunotherapy too, what treatment regime is your DF on if you don't mind me asking? DM's has been paused for awhile now though, her last treatment was over 8 weeks ago now I believe, she is hoping to have her next one tomorrow, however now appears to have a cold virus, so is not sure if she will be able to have it.

I don't know if I have a 'balance', some weeks I don't see DM at all, and actually I see her less now than I did before she had cancer. This is mainly because I have two kids under 5 and as a household, someone in our household has an illness probably MOST of the time, and DM is immunocompromised so obviously nobody poorly will go near her. I also don't drive so am of no use at all in terms of taking to appointments or anything like that, and I also work. I speak to her almost every day, but then I did before anyway.

My Dad's decline seems to be accelerating rapidly. We've seen the palliative care nurse who has prescribed something to try and help his exploding bowels but he's miserable and asking why he feels poorlier every day. I'm not sure if he's taken the whole thing on board or not... but if ignorance is his chosen path, so be it. He's literally wasting away in front of us, it's the most horrific ordeal.

The palliative care nurse was very open and said that we're going to struggle getting care in due to Dad's location - he's on the fringes of the local NHS trust and likely end of life care will come from over an hour away meaning they're unlikely to agree overnight care or more than 1 daily visit. I actually feel on the verge of a constant panic attack because I really don't know how we're going to do this. Even though he can barely stand, can't self care at all, he's not "bad" enough to meet the threshold yet. What a system

@Badger1970 what a horrible situation to be in. Do you have a macmillan nurse you could ask for advice from? Or a cancer charity. Although I understand logistically it is challenging for the palliative services that isn't your problem.

I've not had first hand experience of cancer before now and to see how quickly it is taking my dad it is difficult to see. I have just had a conversation with a friend about facing Christmas with a very Ill dad or no dad at all. I don't like either option.

Sending everyone strength and peace

@unicornsarereal72 it's horrible thinking ahead, isn't it. I can't bear the thought of Christmas at all this year, and bit DH's head off when he asked earlier.

I can't see Dad lasting that long at the rate he's declining at. Neither do I want to suffer. I just him to be Dad again.

badger I am so sorry. I really hope you get some better news soon about some palliative provision for your poor dad.

We got some bad news here recently about DM. She was hoping to get some good news on her scan and blood tests and immediately resume immunotherapy after a hiatus of a couple of months due to complications. However, scan in fact showed cancer continuing to grow, and bloods showed kidney function still too poor to proceed with her immunotherapy. So still on a hiatus. Waiting for the surgeon to see whether he could operate to remove the offending lymph nodes, however he left them the first time because of it being so risky to operate as they are so close to a main artery. DF is medical and believes it's very unlikely they will operate. And believes that its looking likely that the path ahead is not one of actually hoping to treat the cancer for recovery anymore. If that makes sense. I've been really busy with work and don't feel I've had time or space to process what that really means. Feel numb really. For some context, she's in her 50s.

@SecondhandTable
I'm so sorry to read your update today.
The waiting just seems so long and I understand what you mean by not being able to process it fully.
Thinking of you.

@Badger1970
What a system indeed.
Your line about you just want him to be Dad again really resonated with me.
I feel for you and your family. It is a hard time for you all.