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Original poster

BIL cancer and way forward

157 replies

SweetSunshineSA · 30/10/2025 06:18

I have name changed for this as I am a long time poster but have never spoken about this part of our lives in detail as its not something we center our lives around but its there nonetheless.

There is a lot of detail to the this (as its a lifetime) and I cant possibly tell the whole story without writing a novel, so please ask questions if you feel they are relevant and excuse me if I dont cover all the information upfront. Also, we are not in the UK.

My DHs brother, my BIL has not had a very productive life as an adult. He hasnt held down a relationship or marriage for longer than two years, is generally a difficult character with strange ideas, he has been financially reckless to the point of almost living on the street and has never looked after his health. My DH wouldnt consider their relationship close but if you had to ask my BIL he would say that they are. Its a strange dynamic of a younger brother being the one who has always looked after the older brother due to his bad decisions and inability to 'grow up'. My BIL would say this out of love but my DH would say it was out of obligation. Neither of their parents are alive anymore so they are each others only immediate blood relations (besides for kids). My BIL has a daughter in her early twenties from a short marriage.

My BIL was diagnosed with a brain lesion a few years ago which was causing seizures, he was on medical leave from work (he was employed by us prior to this, but this is another story) and we discovered that he was living in a flat in town but had gambled away his entire insurance payout and sold all his belongings and was sleeping on the floor. We uplifted him and placed him in a residential home / care environment where got a roof over his head and 3 meals a day at our expense. His health deteriorated and we took him to the doctor and the lesion had turned into a brain tumour (grade 4 aggressive, Im not sure of the pathology). He underwent a resection, they removed the tumour and he had chemo and radiation. He returned to the care facility but is now in frail care as he is not coping with normal day to day life. The tumour itself has caused brain damage and his cognitive function is impaired. His motor skills are getting worse and worse. He is struggling with bowel control. My DH speaks to him once a week on the phone and I get updates from the nurses at the facility. All his care, medical etc are paid for by us at a fairly large expense but we can afford it luckily.

My DH is struggling with the idea that his DBs life is effectively in his hands and he has to make decisions about his care and well-being. Obviously, if the relationship had been close and 'normal' then I think he would feel different. We (my DH) have to now decide whether we take my BIL in for follow up brain scans. We have been told that the tumour will likely reappear in the next few years after the surgery (its been a year now), he has had one follow up scan which was clear. We dont have all the medical info as we havent always been involved in his oncology appointments and have struggled to get doctors to communicate with us when the patient is an adult himself so the messages we have received have been mixed, ie some say they would operate again if it reappeared, others have said they wouldnt.

We have noticed in the last few phone calls and conversations with his carers that his condition seems to have gone downhill again. What do we do? Do we go back to his medical team and have scans so we know what is going on inside his brain? Do we leave it and let a very aggressive cancer take its course? His quality of life is pretty rubbish and I dont see it improving. We have had to tell the care home to not let him out anymore as he is catching taxis and ubers at his free will and its not safe outside of the facility for him My BIL wouldnt be able to understand this conversation if we tried to have it with him.

I feel like Ive left out a whole lot of details which make the question sound quite callous and uncaring. What do we do?

OP posts:
Original poster
SweetSunshineSA · 30/10/2025 07:49

AnnaMagnani · 30/10/2025 07:39

In order to have palliative chemo or radiotherapy he needs to be able to turn up, and generally behave throughout having his line put in, sitting through having the drip, lying still on the radiotherapy machine. Are any of these things he is physically capable of?

Do you know the name of the cancer he has? That would help a lot in knowing if there even are options left.

Also he needs to be well enough to withstand the treatment. In rough terms this means a performance status of 0-2. I think you are describing someone who is a 3 at best.

ecog-acrin.org/resources/ecog-performance-status/

Show quote history

Thank you - Will look at your link.

OP posts:
Original poster
SweetSunshineSA · 30/10/2025 07:48

BastardtheCat · 30/10/2025 07:45

Good luck with the Oncologist OP. I hope they can give you some concrete answers and a better idea of a medical plan. It sounds like an incredibly tricky and delicate situation, especially given that BIL ‘seems’ to have some sort of capacity to make decisions but clearly unsafe ones that would almost certainly be disastrous to his safety.

I wonder if you sometimes dread it when your phone rings 😖.

MN baffles me sometimes though. Posters who blunder onto threads without reading the various shades of greys in people’s personal situations.

Yes the phone calls....

Happy Christmas in October. I need money to pay the Uber driver because I have messed his car as I wasnt wearing my adult diaper. They are kicking me out because I stole someones shampoo.

It goes on.

OP posts:
Original poster
SweetSunshineSA · 30/10/2025 07:46

TurtleCavalryIsSeriousShit · 30/10/2025 07:38

@SweetSunshineSA Oh darling, I knew it was Africa, I'm in South Africa and I figured you were the same, based on your username and the things you've said about State help.

It is absolutely ridiculous how little State help there is here.

My heart goes out to you. I'm glad that you and DH can afford his care. He is lucky. But I am with you and a few other posters... please don't feel guilty when you do decide on palliative care. You have gone over and above for him.

I'm sorry you are in this position.

It takes a fellow South African to understand.

You cannot live here without your wits about you and some financial security otherwise you will get eaten by the dogs.

OP posts:
Original poster
SweetSunshineSA · 30/10/2025 07:46

Strangesally20 · 30/10/2025 07:38

When he was first diagnosed and had full capacity did yous have any conversations about what an acceptable life would look like for him? Did his medical team have these conversations with him? With his type of cancer and the treatment required I would assume that it was always a possibility that he would end up with a degree of brain damage, of course it’s difficult to predict to what degree that may present but I would assume that these conversations would have taken place? I don’t work in the area of brain cancer/surgery but in an ICU, when someone has had an injury/illness which has caused brain damage we would always ask the families to consider what the patient would want. Some people would want to continue with full treatment in the hope of improvement even if that means relying on others for all their care, some would deem that an unacceptable level of dependency and would rather focus care on comfort and not life sustaining treatments, neither are wrong it’s a very individual choice. I would have a chat with his medical team, and have a think about old conversation with him (and if he is still well enough to have these chats now) and try and think about what HE would want.

Yes he had capacity. But whether his decisions were wise, Im not so sure. Heis (was) a very head-in-the-sand personality and chose not to biopsy the lesion at first. It was only when it became peach sized and the doctor told him he would be dead in 6 months did he agree to the surgery. He has never thought about 'tomorrow' and so I dont think he considered that his condition was life threatening or paid any attention to what this time of his life would look like. It would have been a futile discussion with him at the time. Much like asking if he thought it was necessary to licence your car, or save money, or pay child maintenance.... He would just shrug it off. Real peterpan syndrome unfortunately.

OP posts:
BastardtheCat · 30/10/2025 07:45

Good luck with the Oncologist OP. I hope they can give you some concrete answers and a better idea of a medical plan. It sounds like an incredibly tricky and delicate situation, especially given that BIL ‘seems’ to have some sort of capacity to make decisions but clearly unsafe ones that would almost certainly be disastrous to his safety.

I wonder if you sometimes dread it when your phone rings 😖.

MN baffles me sometimes though. Posters who blunder onto threads without reading the various shades of greys in people’s personal situations.

AnnaMagnani · 30/10/2025 07:39

SweetSunshineSA · 30/10/2025 07:05

Thank you everyone. I will try and get his oncologist to speak to me or my DH so we can see a path forward. This in itself is a challenge when we are not the patient.

I have just read up about palliative chemo, I didnt know that was a thing.

In order to have palliative chemo or radiotherapy he needs to be able to turn up, and generally behave throughout having his line put in, sitting through having the drip, lying still on the radiotherapy machine. Are any of these things he is physically capable of?

Do you know the name of the cancer he has? That would help a lot in knowing if there even are options left.

Also he needs to be well enough to withstand the treatment. In rough terms this means a performance status of 0-2. I think you are describing someone who is a 3 at best.

ecog-acrin.org/resources/ecog-performance-status/

TurtleCavalryIsSeriousShit · 30/10/2025 07:38

@SweetSunshineSA Oh darling, I knew it was Africa, I'm in South Africa and I figured you were the same, based on your username and the things you've said about State help.

It is absolutely ridiculous how little State help there is here.

My heart goes out to you. I'm glad that you and DH can afford his care. He is lucky. But I am with you and a few other posters... please don't feel guilty when you do decide on palliative care. You have gone over and above for him.

I'm sorry you are in this position.

Strangesally20 · 30/10/2025 07:38

When he was first diagnosed and had full capacity did yous have any conversations about what an acceptable life would look like for him? Did his medical team have these conversations with him? With his type of cancer and the treatment required I would assume that it was always a possibility that he would end up with a degree of brain damage, of course it’s difficult to predict to what degree that may present but I would assume that these conversations would have taken place? I don’t work in the area of brain cancer/surgery but in an ICU, when someone has had an injury/illness which has caused brain damage we would always ask the families to consider what the patient would want. Some people would want to continue with full treatment in the hope of improvement even if that means relying on others for all their care, some would deem that an unacceptable level of dependency and would rather focus care on comfort and not life sustaining treatments, neither are wrong it’s a very individual choice. I would have a chat with his medical team, and have a think about old conversation with him (and if he is still well enough to have these chats now) and try and think about what HE would want.

Original poster
SweetSunshineSA · 30/10/2025 07:34

OnlyOnAFriday · 30/10/2025 07:27

Africa may well make things very tricky then. There obviously is good medical facilities available from what you've said about his previous treatment.

At the care facility do they employ any nurses? Is there a linked doctor? I'd be trying to talk to someone who already has contact/oversight of his care and say you think he is deteriorating and asking what they think should happen.

Yes, our private healthcare is world class if you can afford it.

There are nurses but Im not sure of the quality of the nurses, they are certainly not hospital nurses. No linked doctors. I think most of the residents there would be seen to by a government clinic periodically and then that would only be if the patient needs urgent or chronic care. My BIL has never been in the government healthcare system so I imagine getting him in would take time and then I have to ask myself, what would they do for him? So again, it would come down to my DH.

OP posts:
Original poster
SweetSunshineSA · 30/10/2025 07:31

babyproblems · 30/10/2025 07:24

Very very difficult. I think your brother might benefit from some counselling to help process what’s been before and also what he would like to do for his brother, maybe some would help you also?? I say him because a lot of what you say is about his family / parental dynamic. Ultimately you’re not responsible for anyone other than your children, however you’ve already done a lot so I feel you can’t ’abandon’ him at this point and if you can afford it in terms of money and time, you should probably help him to some degree. What degree though is the question. This is a complex question so I do think counselling might help. Lots of luck to all involved x

Thank you. Yes I have suggested this to him. Its a lot to carry for one person.

A lot of what he does for his brother is duty and obligation and he is very angry that he is not doing it out of love. Its complex.

I have taken what everyone has said on board here and will contact his oncologist.

I really do understand everyones confusion about POA etc as that would be the most logical thing to do in a system that works but I just dont see the point. It would involve a lengthy process in a flawed system, legal costs and the result would still be the same.. My Dh would be in control and have to make all the decisions. My BIL has no money so that would not be a factor.

OP posts:
OnlyOnAFriday · 30/10/2025 07:27

Africa may well make things very tricky then. There obviously is good medical facilities available from what you've said about his previous treatment.

At the care facility do they employ any nurses? Is there a linked doctor? I'd be trying to talk to someone who already has contact/oversight of his care and say you think he is deteriorating and asking what they think should happen.

babyproblems · 30/10/2025 07:24

Very very difficult. I think your brother might benefit from some counselling to help process what’s been before and also what he would like to do for his brother, maybe some would help you also?? I say him because a lot of what you say is about his family / parental dynamic. Ultimately you’re not responsible for anyone other than your children, however you’ve already done a lot so I feel you can’t ’abandon’ him at this point and if you can afford it in terms of money and time, you should probably help him to some degree. What degree though is the question. This is a complex question so I do think counselling might help. Lots of luck to all involved x

OwlBeThere · 30/10/2025 07:23

of course you get the scans.

Jesus wept.

Original poster
SweetSunshineSA · 30/10/2025 07:19

ExtraOnions · 30/10/2025 07:17

Also Doctors should be making decisions based on the best interests of the patient, regardless of the country .. it’s not always about asking relatives to make a decision

Again when Mum has a stroke, a Dr came to see us to say that there was surgery they could do but, it was invasive, risky, and would probably not make much of a difference, so they would not be doing it as it wasn’t in the Patients best interests.

Im in Africa...

OP posts:
Original poster
SweetSunshineSA · 30/10/2025 07:18

ThisIsMyBurnerPhone · 30/10/2025 07:14

I’m genuinely confused why this is on you and your DH to make medical decisions. Either your BIL has capacity to make these himself, or he doesn’t. If he doesn’t then someone needs to have Power of Attorney for his health decisions. That could be his daughter, it could be your DH or it could be someone else entirely or the state. At the moment you’ve told the home not to let him out to get Ubers, but what legal powers are they using to keep him in? Without a legal framework and safeguards, this sounds like possibly unlawful detention. Whatever country you are in, there will be people with expertise in this who can guide you. Even without the emotional complexity, this should not be on you both to decide on his behalf, without any checks and balances.

You clearly dont know much about where we live.... Ill forgive you.

Id love to have the luxury of a state that assists with these things but unfortunately the reality is that if we hadnt intervened when we did, his landlord would have kicked him, he would have lived on the streets for as long as he could have survived, he would have been taken to a doctor to discover the peach sized tumour and he would be dead. Even if he had managed to find his way into our govt health system they probably dont have the facilities to treat him and they would have begun palliative care 2 years ago.

OP posts:
ExtraOnions · 30/10/2025 07:17

Also Doctors should be making decisions based on the best interests of the patient, regardless of the country .. it’s not always about asking relatives to make a decision

Again when Mum has a stroke, a Dr came to see us to say that there was surgery they could do but, it was invasive, risky, and would probably not make much of a difference, so they would not be doing it as it wasn’t in the Patients best interests.

ThisIsMyBurnerPhone · 30/10/2025 07:16

What country are you in OP? I’ve seen your post about not bothering with social services but there will be laws and I’m confused that you’re saying he will be dead before a POA decision. If you let us know the country, posters can help you better.

ThisIsMyBurnerPhone · 30/10/2025 07:14

I’m genuinely confused why this is on you and your DH to make medical decisions. Either your BIL has capacity to make these himself, or he doesn’t. If he doesn’t then someone needs to have Power of Attorney for his health decisions. That could be his daughter, it could be your DH or it could be someone else entirely or the state. At the moment you’ve told the home not to let him out to get Ubers, but what legal powers are they using to keep him in? Without a legal framework and safeguards, this sounds like possibly unlawful detention. Whatever country you are in, there will be people with expertise in this who can guide you. Even without the emotional complexity, this should not be on you both to decide on his behalf, without any checks and balances.

Kirbert2 · 30/10/2025 07:14

SweetSunshineSA · 30/10/2025 07:05

Thank you everyone. I will try and get his oncologist to speak to me or my DH so we can see a path forward. This in itself is a challenge when we are not the patient.

I have just read up about palliative chemo, I didnt know that was a thing.

Palliative radiotherapy is also a thing if that helps.

TeaBoxFlower · 30/10/2025 07:13

SweetSunshineSA · 30/10/2025 07:05

Thank you everyone. I will try and get his oncologist to speak to me or my DH so we can see a path forward. This in itself is a challenge when we are not the patient.

I have just read up about palliative chemo, I didnt know that was a thing.

I have just read up about palliative chemo, I didnt know that was a thing

This sums up exactly why you (Your DH) needs to go back to the medical team. You and your DH are not doctors. You can't make medical decisions without knowing the facts of the brothers medical condition or his potential treatment options.
As a layman, you're not well enough informed to make any decision right now

Anditstartedagain · 30/10/2025 07:13

OP isn’t in the UK. I think you need some legal/carers advice specific to the country you are in.

The the UK a care home can’t just decide a person can’t leave. It’s all very different.

Original poster
SweetSunshineSA · 30/10/2025 07:12

@ExtraOnions @Cannedlaughter

We do not live in the UK. Social services, the state, funded care homes etc exist but are either useless or we will all be dead by the time they get around to our case.

I dont really see the point in legally getting POA again because it would take so long and secondly, we make all the decisions and pay for everything already.

OP posts:
Original poster
SweetSunshineSA · 30/10/2025 07:10

BastardtheCat · 30/10/2025 07:08

TheWondetHorse makes a very good point.

Yes I think you are right. We need to make decisions with his oncologist otherwise my DH is going to need years of therapy if he carries this decision alone.

OP posts:
Cannedlaughter · 30/10/2025 07:10

Is there someone else you could give power of attorney too. Could you hand that to social services? I would contact his social worker and if he doesn’t have one, request he does.
I think you need to step back and let someone else take care of the decisions. There is obviously more to your relationship or how he has behaved in the past. You don’t even have to pay for his care and he is very lucky you do.

ExtraOnions · 30/10/2025 07:09

If his mental state is how it is, you have left it too late for POA.

He needs to be assessed to see if he has Capacity to make decisions around his care needs.

We went through this when Mum had her Stroke, she wanted to go home… which was impractical and frankly dangerous - Social Services & the Medical Team assessed her as lacking capacity to make decisions on care, which is why she now lives in a care home.

Contact Social Services, and start to process around Capacity … I’m suprised the facility he’s in, and the current medical professionals have not already suggest this, if he is as he sounds.

As for “continuing care” it’s almost impossible to get… in the situation you described I wouldn’t bother.