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Original poster

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:
Bluemat · 13/02/2023 19:29

GP did visit today and they were dumbfounded at the fact nothing has moved forwards. They assured us they were going to contact the Oncology department. All we can do now is hope they actually do something and things start to move.

I'm fuelled by tea as well, but not the unhealthy choices of food. I'm struggling to eat much as I'm so worried and stressed about everything.

Badger1970 · 13/02/2023 20:03

@Bluemat I'm so glad the GP came in, and hopefully they can push a referral forward for your Dad. It's scary and sad to see how disjointed the system is, but I'd echo @ButnotforLola in saying that the palliative care team are usually in a league of their own in terms of helping.

Is he getting any pain relief? Dad went onto morphine patches fairly early on in his journey.

Bluemat · 13/02/2023 20:06

Badger1970 · 13/02/2023 20:03

@Bluemat I'm so glad the GP came in, and hopefully they can push a referral forward for your Dad. It's scary and sad to see how disjointed the system is, but I'd echo @ButnotforLola in saying that the palliative care team are usually in a league of their own in terms of helping.

Is he getting any pain relief? Dad went onto morphine patches fairly early on in his journey.

Hopefully the GP will be able to do something - I am at a complete loss knowing what else to do.

He has pain relief and so far it's working, so at least that is something.

The system is just completely broken and I can't believe the way he almost seems to have just been forgotten about. There has been no advice really from anyone about what we do if we're struggling.

Badger1970 · 13/02/2023 20:46

We found that community care just wasn't up to the level of support/care that Dad needed, I truly hope that you can find better. Be kind to yourself and let the small things go - my poor house has never been so neglected, and it's now covered in boxes of Dad's things that need sorting but I'm just letting it wash over me.

The counsellor I see gave me some really good advice of taking the "right here, right now" approach and only dealing with what was needed at that moment.

Bluemat · 13/02/2023 21:13

I'm trying to not sweat the small stuff and relax when I can.
The stress is giving me palpitations. It's such a worrying time.

unicornsarereal72 · 14/02/2023 07:56

@Bluemat I'm so sorry this has happened to your dad. It is terrible he has suffered. I hope today brings you support for you and dad. The cancer care team. Palliative services and hospice at home have been excellent in our experience. Well done for advocating for your dad. And make sure you look after yourself too.

Bluemat · 15/02/2023 15:45

No biopsy will be taking place, this decision was made days ago but no one has informed us.
There is nothing that can be done now - treatment won't work.

Palliative care team are due to come out.

Badger1970 · 15/02/2023 16:16

@Bluemat same happened with my Dad, there was almost nothing in terms of investigation other than bloods and an initial MRI. We still don't know if it was a primary or secondary cancer in his liver but in many ways, it didn't matter as the outcome was always going to be the same.

You must all be reeling but the palliative care team are very specialist and know their stuff. I hope they're in touch soon to support you all. I found this part the hardest with Dad and sobbed for weeks after his diagnosis whilst desperately trying to keep his mood up Flowers

Bluemat · 15/02/2023 18:08

Badger1970 · 15/02/2023 16:16

@Bluemat same happened with my Dad, there was almost nothing in terms of investigation other than bloods and an initial MRI. We still don't know if it was a primary or secondary cancer in his liver but in many ways, it didn't matter as the outcome was always going to be the same.

You must all be reeling but the palliative care team are very specialist and know their stuff. I hope they're in touch soon to support you all. I found this part the hardest with Dad and sobbed for weeks after his diagnosis whilst desperately trying to keep his mood up Flowers

@Badger1970 I'm numb, completely numb. I knew deep down what was coming.
I don't want him to suffer for long, the last two weeks he's rapidly gone downhill and it's heartbreaking to see. My dad is my hero, but I don't him to be in pain and linger on.

unicornsarereal72 · 15/02/2023 19:27

@Bluemat I'm so sorry to see your update. You and your family are all in my thoughts. You will find the reserves to dig deep and be there for your dad. Even though you don't feel you can.

Badger1970 · 15/02/2023 19:38

@Bluemat it's so cruel to have to just watch someone you adore go through this. But you can help your Dad get through this and you will. That strength comes from somewhere, christ knows where, but it'll be there.

I think the numbness is a form of self preservation Flowers

Bluemat · 15/02/2023 21:15

Thankyou both so much, he just doesn't deserve this at all. He's a good man. Life hasn't been good to him this last year.

I'm having a glass of wine tonight I probably shouldn't given the palpitations I keep having.

Badger1970 · 16/02/2023 18:38

Have the palliative care team been in contact yet, @Bluemat

Bluemat · 16/02/2023 20:19

No yet another cock up, GP hasn't done referral for it. After another day of banging my head against a wall they're coming tomorrow to assess and do a referral.

The system is totally screwed.

Badger1970 · 16/02/2023 21:40

@Bluemat it's a reality check, isn't it? Don't be afraid to keep chasing, it's par for the course unfortunately. I swear that the GP receptionist used to sigh when she realised it was me yet again Blush it's also quite handy to get email addresses especially for the GP surgery. I made out that I couldn't use my phone at work, even though I could. It means you can bypass their phone systems that way.

Bluemat · 17/02/2023 08:22

Good point about the receptionists although today it was a district nurse that called them up. She was very pushy with them and wasn't going to leave things as they were because she said she can see we are in dire need of help.

Downstair · 17/02/2023 11:43

@Bluemat (and others) I'm sorry you're going through this. My experience of the system was the same as yours, it works well in pockets but the communication between those different teams is abysmal.
When my Dad got signed out from oncology as there was no more they could do for him he was supposed to be passed to the local palliative care team (by the GP I think who'd been told this by oncology). It was only when we chased it a few weeks later that it happened.

I've plenty of other examples but my point is that you're not alone in your experience. You have to fight and shout and pester to make sure the right things happen when they should. It's exhausting, and you shouldn't have to deal with this on top of the emotional aspects you're processing.

Your Dad is fortunate to have you fighting his corner. It's so hard to experience the role reversal of having to look after a parent in this way. The way I framed it, to keep myself going, was that it was an honour to be in a position to help mine in whatever way I could after he'd been my parent and friend. At points it was almost like an outer body experience. It's traumatic, but you will find a way.

Try to look after yourself as well as you can in the circumstances. 💙

Bluemat · 17/02/2023 17:36

Macmillan have been amazing today and he has a bed in a hospice and will be going tomorrow. Basically he can't have an oncologist because there is nothing they can do GP wanted him taken to hospital but i refused, there is absolutely no point in him being in hospital.

Badger1970 · 17/02/2023 18:26

@Bluemat gosh that's positive for your Dad, the hospice my Dad was in were amazing at getting his pain/symptoms under control and really quickly. Is it fairly close to you all so you can visit easily?

And it leaves you to be his daughter/family, that was the bit that I think I appreciated the most. Trying to be a care co-ordinator isn't an easy task. Hope you're OK, there's something very surreal about hospices and accepting that it's needed Flowers

Bluemat · 17/02/2023 21:14

Badger1970 · 17/02/2023 18:26

@Bluemat gosh that's positive for your Dad, the hospice my Dad was in were amazing at getting his pain/symptoms under control and really quickly. Is it fairly close to you all so you can visit easily?

And it leaves you to be his daughter/family, that was the bit that I think I appreciated the most. Trying to be a care co-ordinator isn't an easy task. Hope you're OK, there's something very surreal about hospices and accepting that it's needed Flowers

The hospice is about 20 mins away from us but I plan on staying with him as much as I can.
Macmillan have sorted more for us today than anyone else has in the last two weeks.

AllBellyandBoobs · 18/02/2023 13:01

My mum died yesterday morning. She was admitted to hospice from A&E last Sunday, an already existing bowel perforation had become worse causing her pain. The hospice immediately got her pain under control, she slipped into unconsciousness by Tuesday, and died very peacefully yesterday. Today is the first day for 10 months when I haven't had something to do. It feels incredibly disorientating.
@Bluemat I am glad your dad is going to hospice and I hope your experience of their care is as good as ours was.

Bluemat · 18/02/2023 16:22

AllBellyandBoobs · 18/02/2023 13:01

My mum died yesterday morning. She was admitted to hospice from A&E last Sunday, an already existing bowel perforation had become worse causing her pain. The hospice immediately got her pain under control, she slipped into unconsciousness by Tuesday, and died very peacefully yesterday. Today is the first day for 10 months when I haven't had something to do. It feels incredibly disorientating.
@Bluemat I am glad your dad is going to hospice and I hope your experience of their care is as good as ours was.

I am so sorry to read this. Sending you so much love.

Dad is settled at the moment and the staff have been superb. He's had a shave and wash and looks like a new man.

Badger1970 · 18/02/2023 18:28

@Bluemat I'm so glad your Dad is there and settling. You can at least breathe deeply knowing his medical care is taken in hand.

@AllBellyandBoobs I'm so sorry for your loss. You're so right about the time, not arranging your day around visiting or caring. It's incredibly surreal and strange... 3 weeks on I'm still struggling to get used to that. Take care of yourself and just do what feels instinctive Flowers

Bluemat · 18/02/2023 19:59

The hospice have done wonders for him already today, at one point he was awake looking around the room and talking. He's been asleep every day for the last two weeks all day. I know it's because of the drugs that he seemed that way.

The hospice he is at is truly a wonderful place. I know we only have days left though, there's talk of him having a pump tomorrow to deliver his medication and that breaks my heart. I've worked in care and been with people at the end of life and I know what the signs are when things are imminent.

unicornsarereal72 · 18/02/2023 20:32

@Bluemat I am so pleased to hear your dad is safe and comfortable. Please just make the most of this time you have together.

@AllBellyandBoobs you are in my thoughts.