Cancer

[tokyojoe]

54 minutes ago, Bob Spunkmouse said:

She’s had the results of her scan today and has been told it’s in all of the bones they’ve looked at from head to hip, mostly in the base of her spine.

 

i still don’t know if that means it isn’t in her organs or if they just haven’t checked them yet.

 

i feel numb, but don’t feel like we know anything we didn’t already think we knew last week.

 

were going to talk to our daughter this weekend now and tell her that she’s poorly and that she’s not going to get better. The thought of that conversation absolutely ruins me.

 

does anyone have any experience of talking to kids about this sort of thing?

 

ive read the Macmillan document about it and will read it again on the train home soon too, but any personal experiences Would be Gladly received. 

As Stig says there is no right or wrong way. Hope whatever happens works out as best as possible.

Best of luck mate.

[tokyojoe]

54 minutes ago, Bob Spunkmouse said:

She’s had the results of her scan today and has been told it’s in all of the bones they’ve looked at from head to hip, mostly in the base of her spine.

 

i still don’t know if that means it isn’t in her organs or if they just haven’t checked them yet.

 

i feel numb, but don’t feel like we know anything we didn’t already think we knew last week.

 

were going to talk to our daughter this weekend now and tell her that she’s poorly and that she’s not going to get better. The thought of that conversation absolutely ruins me.

 

does anyone have any experience of talking to kids about this sort of thing?

 

ive read the Macmillan document about it and will read it again on the train home soon too, but any personal experiences Would be Gladly received. 

As Stig says there is no right or wrong way. Hope whatever happens works out as best as possible.

Best of luck mate.

[Champ]

52 minutes ago, Bob Spunkmouse said:

Thanks mate. Unfortunately with a 7 year old I reckon there probably is a “wrong way” which could harm her. That’s the big worry.

 

ill re-read the document I wish didn’t exist.

I’m so sorry to read this Bob. You wouldn’t wish this and what may lie ahead of you on anyone.

 

As far as how ‘best’ to tell/help your daughter I don’t think there’s anything you can say that can make the situation any worse than it is, is there. Isn’t it just about giving her information in ways that she can understand and maybe by stages. She’s a bright kid and maybe she’s already picked up that something’s up. Maybe at this stage it’s just about telling her that the doctors have found out that mummy’s not well again but they still need to find out what’s going to happen next. Don’t tell her any untruths or anything that you can’t promise and take it from there. I’d really also recommend asking for help from the hospital and asking what other specific organisations there are locally that can help, eg a Maggies Centre or your local hospice. There maybe groups she can attend and meet up with other kids going through something similar. And just keep talking to her and letting her know it’s ok for her to talk about it as well as trying to keep everything else as ‘normal’ as possible.

 

Wishing you all the luck in the world 

[Bob]

5 minutes ago, Champ said:

I’m so sorry to read this Bob. You wouldn’t wish this and what may lie ahead of you on anyone.

 

As far as how ‘best’ to tell/help your daughter I don’t think there’s anything you can say that can make the situation any worse than it is, is there. Isn’t it just about giving her information in ways that she can understand and maybe by stages. She’s a bright kid and maybe she’s already picked up that something’s up. Maybe at this stage it’s just about telling her that the doctors have found out that mummy’s not well again but they still need to find out what’s going to happen next. Don’t tell her any untruths or anything that you can’t promise and take it from there. I’d really also recommend asking for help from the hospital and asking what other specific organisations there are locally that can help, eg a Maggies Centre or your local hospice. There maybe groups she can attend and meet up with other kids going through something similar. And just keep talking to her and letting her know it’s ok for her to talk about it as well as trying to keep everything else as ‘normal’ as possible.

 

Wishing you all the luck in the world 

Thanks Cath.

 

my girlfriends sister in law’s mum and sister are both psychologists so I’ve reached out for any advice they can share. 
 

ive just got to have as normal a Friday night and Saturday with her as possible and hope we don’t get it too wrong on Sunday.

 

shes been brilliant through our separation and she’s smart and pretty mature for her age, but she doesn’t tend to let things show when she’s feeling upset or insecure.

 

the advice says it’s good to let her see that we’re upset, so the fact I’ll definitely be in bits when we tell her is probably a good thing all told.

[Champ]

19 minutes ago, Bob Spunkmouse said:

Thanks Cath.

 

my girlfriends sister in law’s mum and sister are both psychologists so I’ve reached out for any advice they can share. 
 

ive just got to have as normal a Friday night and Saturday with her as possible and hope we don’t get it too wrong on Sunday.

 

shes been brilliant through our separation and she’s smart and pretty mature for her age, but she doesn’t tend to let things show when she’s feeling upset or insecure.

 

the advice says it’s good to let her see that we’re upset, so the fact I’ll definitely be in bits when we tell her is probably a good thing all told.

That all sounds good.

 

I’m wondering what are you frightened you might do ‘wrong’ when you tell her? I’m struggling to think what could be worse than what you’re going to tell her to be honest

[Bob]

7 minutes ago, Champ said:

That all sounds good.

 

I’m wondering what are you frightened you might do ‘wrong’ when you tell her? I’m struggling to think what could be worse than what you’re going to tell her to be honest

I really don’t know. I’m just scared to be honest. She’s such a wonderful and innocent kid, and unfortunately she’s going to have to suffer now because of this bullshit disease.

[Champ]

2 minutes ago, Bob Spunkmouse said:

I really don’t know. I’m just scared to be honest. She’s such a wonderful and innocent kid, and unfortunately she’s going to have to suffer now because of this bullshit disease.

I know. I hope you didn’t think I was being unkind/unhelpful.

From where I’m stood, reading about the way you’re thinking about and your concern for your daughter, I think you’re going to do as much as you can to help your daughter through this. And remember, it isn’t just about one shot at getting it ‘right’ this is just the beginning of a long road. You’ve already done it once before, she will be ok. Oh, and remember to look after yourself too! 

[Bob]

12 minutes ago, Champ said:

I know. I hope you didn’t think I was being unkind/unhelpful.

From where I’m stood, reading about the way you’re thinking about and your concern for your daughter, I think you’re going to do as much as you can to help your daughter through this. And remember, it isn’t just about one shot at getting it ‘right’ this is just the beginning of a long road. You’ve already done it once before, she will be ok. Oh, and remember to look after yourself too! 

I didn’t Cath. Not at all.

 

ive contacted a counsellor just now as I know I’m rubbish at talking to friends and family properly. I try to put a brave face on things and while I’m alright at crying, I’m shit at talking, so that will help.

[Champ]

4 minutes ago, Bob Spunkmouse said:

I didn’t Cath. Not at all.

 

ive contacted a counsellor just now as I know I’m rubbish at talking to friends and family properly. I try to put a brave face on things and while I’m alright at crying, I’m shit at talking, so that will help.

You are not alone in that one, Bob. Where’s ‘The world of a man’ thread when you need it, eh?

[Bob]

12 minutes ago, Champ said:

You are not alone in that one, Bob. Where’s ‘The world of a man’ thread when you need it, eh?

It’s still stuck in Paulie’s bedroom unable to get back out through the tiny gap between the bed and the wardrobe I think...

[Bob]

2 hours til I break my little girls heart.

[Champ]

41 minutes ago, Bob Spunkmouse said:

2 hours til I break my little girls heart.

I was thinking about you driving in to work this morning. 
 

You have done this before and she coped. Remind yourself what you did last time and keep doing it.

 

Its a bit of a cliche but kids are more resilient than they’re often given credit for

[Tony Moanero]

1 hour ago, Bob Spunkmouse said:

2 hours til I break my little girls heart.

I don’t have any advice to offer, Bob, but my thoughts are with you.

[Barrington Womble]

On 05/03/2020 at 08:38, Bob Spunkmouse said:

She’s had the results of her scan today and has been told it’s in all of the bones they’ve looked at from head to hip, mostly in the base of her spine.

 

i still don’t know if that means it isn’t in her organs or if they just haven’t checked them yet.

 

i feel numb, but don’t feel like we know anything we didn’t already think we knew last week.

 

were going to talk to our daughter this weekend now and tell her that she’s poorly and that she’s not going to get better. The thought of that conversation absolutely ruins me.

 

does anyone have any experience of talking to kids about this sort of thing?

 

ive read the Macmillan document about it and will read it again on the train home soon too, but any personal experiences Would be Gladly received. 

I'm really gutted for you Bob. Fucking hell. I'm not sure how relevent my advice is, but I'll share anyway. My kids were 7 & 10 when my stuff started. Once I got my terminal prognosis, I wasn't quite sure how to deal with it with the kids. Up till then they just knew I wasn't well and the doctors were trying to find out why.

 

Once it was clear it was cancer and I was stage 4, I obviously had a choice to make on what to tell them. Because they were young, I decided I didn't need to tell them right then how dire the situation was. I just told them I was really ill, but the doctors were going to give me some treatment to improve it. I actually ended up using that line with everyone. It just felt there would be a point when I knew there was nowhere to turn and the fight was done, I could tell them then. 

 

As it turns out, I feel I made the right choice because I was lucky and I turned around all the doctors expectations, so I didn't put the kids through unnecessary anguish, almost like they'd need to go through dealing with my death twice. As it turns out up to now, they've not had to deal with it once. But obviously it could have been very different. 

 

I don't think there's a right or wrong to this. Everyone's prognosis is different even if it's terminal and all kids will be different (and different ages), so need to be dealt with for your own unique case. The underlying thing for me was never to lie to them, just perhaps only show them as much truth as I absolutely had to. 

[KMD7]

I've no advice to give Bob, wouldn't have a clue what to do if I was faced with what you are going through,  just want you to know I'm thinking of you and your family. X

[3 Stacks]

31 minutes ago, Barry Wom said:

I'm really gutted for you Bob. Fucking hell. I'm not sure how relevent my advice is, but I'll share anyway. My kids were 7 & 10 when my stuff started. Once I got my terminal prognosis, I wasn't quite sure how to deal with it with the kids. Up till then they just knew I wasn't well and the doctors were trying to find out why.

 

Once it was clear it was cancer and I was stage 4, I obviously had a choice to make on what to tell them. Because they were young, I decided I didn't need to tell them right then how dire the situation was. I just told them I was really ill, but the doctors were going to give me some treatment to improve it. I actually ended up using that line with everyone. It just felt there would be a point when I knew there was nowhere to turn and the fight was done, I could tell them then. 

 

As it turns out, I feel I made the right choice because I was lucky and I turned around all the doctors expectations, so I didn't put the kids through unnecessary anguish, almost like they'd need to go through dealing with my death twice. As it turns out up to now, they've not had to deal with it once. But obviously it could have been very different. 

 

I don't think there's a right or wrong to this. Everyone's prognosis is different even if it's terminal and all kids will be different (and different ages), so need to be dealt with for your own unique case. The underlying thing for me was never to lie to them, just perhaps only show them as much truth as I absolutely had to. 

That's a special perspective you have, Barry. 

 

I wouldn't dare tell Bob how to act in his own situation, but I would hope this is the way I would act if I was ever in that kind of situation. 

[Bjornebye]

5 hours ago, Bob Spunkmouse said:

2 hours til I break my little girls heart.

Thoughts with you mate. x 

 

 

[Barrington Womble]

2 hours ago, 3 Stacks said:

That's a special perspective you have, Barry. 

 

I wouldn't dare tell Bob how to act in his own situation, but I would hope this is the way I would act if I was ever in that kind of situation. 

As parents there's no manual no matter what challenges. You can only ever do what you think is the right thing, some times you'll fuck it up because we're human and we can't get everything right. Perhaps this type of challenge is a little more unexpected, but I found just deal with it like I've dealt with everything else - the hardest part is your head is up your arse a bit at the time and it's tough to think and make decisions like you normally do. 

[Bob]

Thanks all, and Barry in particular I’m embarrassed to not have known (or at least remember) what you’ve already been through - but delighted to hear its positive.

 

we talked her through it, and she cried with us, but we also giggled at things and laughed at photos her mum showed of when she was a little girl, and then we went through our wedding photos.

 

me and my girl then played in two parks, and we went for tea with my mum and dad and my girlfriend tonight.

 

we just had another little cry together at bed time but then giggled our way through a chapter of Winnie-the-pooh which is one of our favourite books.

 

thanks for all your words.

[Champ]

You survived, Bob and so did she. 
 

You are better at this than you think you are

[Barrington Womble]

http://chng.it/LstpGfdw

[Bob]

She’s got an appointment with the consultant this morning.

 

ive asked to go with her, but she’s said no, so instead I just wait here passing time, inactive, unable to function, unable to think about anything else at all.

[Champ]

38 minutes ago, Bob Spunkmouse said:

She’s got an appointment with the consultant this morning.

 

ive asked to go with her, but she’s said no, so instead I just wait here passing time, inactive, unable to function, unable to think about anything else at all.

Go and do something that makes you feel good. Charge your own batteries

[Barrington Womble]

7 hours ago, Bob Spunkmouse said:

She’s got an appointment with the consultant this morning.

 

ive asked to go with her, but she’s said no, so instead I just wait here passing time, inactive, unable to function, unable to think about anything else at all.

So I get that too. I used to find I couldn't concentrate on what the oncologist was saying because I was worried about the reaction of my missus or I'd be formulating some questions and she'd throw in her own and take me right off track.

 

Hope it goes as well as it can. 

[Barrington Womble]

Some good news in this thread for a change. 

 

New blood test can detect 50 types of cancer

 

https://www.theguardian.com/science/2020/mar/31/new-blood-test-can-detect-50-types-of-cancer?CMP=Share_AndroidApp_Notes

 

New blood test can detect 50 types of cancer

System uses machine learning to offer new way to screen for hard-to-detect cancers

 

Nicola Davis

Published:00:01 Tue 31 March 2020

 Follow Nicola Davis

 

A new blood test that can detect more than 50 types of cancer has been revealed by researchers in the latest study to offer hope for early detection.

The test is based on DNA that is shed by tumours and found circulating in the blood. More specifically, it focuses on chemical changes to this DNA, known as methylation patterns.

Researchers say the test can not only tell whether someone has cancer, but can also shed light on the type of cancer they have.

Dr Geoffrey Oxnard of Boston’s Dana-Farber Cancer Institute, part of Harvard Medical School, said the test was now being explored in clinical trials. “You need to use a test like this in an independent group at risk of cancer to actually show that you can find the cancers, and figure out what to do about it when you find them,” he said.

Writing in the journal Annals of Oncology, the team reveal how the test was developed using a machine learning algorithm – a type of artificial intelligence. Such systems pick up on patterns within data and as a result learn to classify it.

The team initially fed the system with data on methylation patterns in DNA from within blood samples taken from more than 2,800 patients, before further training it with data from 3,052 participants, 1,531 of whom had cancer and 1,521 of whom did not.

Using this information, the system sorted the samples into groups based on the methylation patterns. The team then taught the system which groups reflected which type of cancer.

“In pregnant women we look in their free-floating DNA for foetal abnormalities,” said Oxnard. “We know this [approach] exists, the question is how do you fine-tune and perfect the art of looking for cancer in this free-floating DNA? And that is what the machine learning did.”

The team then tested the trained system on another set of samples from 1,264 individuals, about half of whom had cancer.

The results reveal that less than 1% of those without cancer were wrongly identified by the system as having the disease. “It is really important you don’t tell non-cancer patients they have cancer,” said Oxnard.

When it came to identifying people with cancers the team found that, across more than 50 different types of cancer, the system correctly detected that the disease was present 44% of the time – although the team stress that figure could differ if the test was used to screen a general population, rather than those known to have cancer.

Detection was better the more advanced the disease was. Overall, cancer was correctly detected in 18% of those with stage I cancer, but in 93% of those with stage IV cancer.

The team say the results are exciting as they offer the possibility of a new way to screen for cancers that are otherwise difficult to detect. For example, the system correctly identified 63% of those with stage I pancreatic cancer, rising to 100% in stage IV.

The team further found that the system could shed light on the type of cancer. For 96% of samples deemed to show cancer, the test was able to offer a prediction for in which the tissue the cancer originated, with 93% of these predictions found to be correct.

Dr David Crosby, head of early detection at Cancer Research UK, said that detecting cancers in their early stages is important as they are less aggressive and more treatable.

Although this test was still at an early stage of development, the initial results were encouraging, he said. “And if the test can be fine-tuned to be more efficient at catching cancers in their earliest stages, it could become a tool for early detection.”

But Crosby added there was work to do. “More research is needed to improve the test’s ability to catch early cancers and we still need to explore how it might work in a real cancer screening scenario,” he said.