BIL cancer and way forward

[SweetSunshineSA]

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?

That would be very common yes

Very likely yes, it wouldn't have been curative surgery. The life expectancy even with treatment is short.

Thanks for this. I can’t help wonder if we had been more involved at the time or if the prognosis had been given more clearly whether my BiL would have gone through with the initial resection. I don’t see much change in his quality of life living with the tumor vs now living with the effects of the procedure and possibly radiation, besides the obvious that he has had more time. From what I can understand the tumor has done significant damage to his brain leaving him cognitively challenged and removing it has not undone the damage.

He has form for not understanding or twisting conversations so it would have been nice to know what his medical team advised him or explained back then.

Prognosis without treatment is weeks to months. Most people understandably want to do something. Even though the aftermath is rarely worth it

Thank you for your response. It’s this kind of unemotional stuff that is helpful and whilst I understand that it’s hard to hear, it’s useful in a situation like this. Thank you.

I don’t think there’s a right or wrong answer here. There’ll be “what if’s” no matter what decisions are made.

Is his daughter aware of his situation? Have you asked her if she has any opinion on his care? I would want her to know, but be clear you aren’t expecting her to “step up” or have involvement unless she wants to. There may be a time when medical professionals will only consult with his next of kin & that would be cruel if it’s the first time she’s contacted.

What would you want if you were in his position? What would DH want if he was in that position? Or what would you do for a relative you really loved & had a good relationship with (just so you know it’s not feelings for him clouding your judgement)
Throwing money at health doesn’t always improve things.

If the outcome of any scans, treatment etc would not improve quality of life, then I’d prioritise comfort, care & pain management over further medical tests/intervention. & that’s what I’d hope my loved ones will do for me.

Sorry you are all going through this.

Im glad you find it helpful, I’m sorry if I seem unemotional. I am a scientist first and foremost. But also 5 years in to being a carer for a person with a brain tumour.

I think a lot of my emotion has been replaced by facts and figures, treatments and prognostics.
It’s a very hard road

@SweetSunshineSA I don’t think that that poster was being unpleasant but was just confused because they don’t know which country you’re in (and didn’t know the continent at that point either). I’m guessing it might be South Africa from your username?

The poster who is a palliative care doctor has given some good advice.

I agree with you that involving medical professionals in your decision-making (and at every step) will reduce the burden and impact of the decision-making on your husband.

Some posters have asked why you wouldn’t continue to get scans, and I would echo this. The idea of stopping scans seems a bit arbitrary because, even if there is a decision not to have further active treatment, or you even just decide it’s unlikely you would intervene further, scans would potentially be an important part of that decision and would also give important information for palliative care. The scans in themselves are not treatment.

Forgive me if I’m wrong but (as you’ve said that cost isn’t the issue) it feels like you’ve got an idea about stopping scans because they’re a sort of gate holder of key information and, if you aren’t repeatedly confronted with that information then you won’t have to keep making decisions, even if those decisions are always to do nothing. I understand that this situation must feel like death by a thousand cuts and that, if you decide to stop active treatment for your BiL, it may be easier to feel like you’re making that decision once rather than potentially feel confronted by it every time there is a scan (even if in reality your decision would not change). It must be a huge burden to feel like that decision rests with you, but I don’t think that stopping scans is necessarily the way forward. I would imagine, for example, that scans would still be needed for information on the progression of the tumour, e.g. so that your BiL knew how long he had left and the right palliative care could be given.

You realise you don’t have to have any responsibility financial or otherwise for him? Contact adult social services and say you are not able to pay for this care facility anymore and don’t want to have to manage your bil any more and are handing him over to the local authority. Make it clear you will not have any more to do with his care etc and they will have to sort him out and manage all of him and his needs. That is if that’s what your dh wants?

So your question is so you take him to the doctor or do you let him die? Wow. Your attitude towards him is judgemental and cruel, the poor guy has had a tough life and noone to count on emotionally. It's good of you to pay his bills but he may well value a relationship more. Now he has to rely on you to decide whether his life is, in your eyes, worth saving? Poor soul that he is.

Didn’t mean to be harsh with the poster but many people have made an incorrect assumption about us living in the UK. If we were able to get support from the state we would have done that in a heartbeat.

I understand what you are saying about dealing with it repeatedly and it’s valid. We very much wish this would go away as it’s unpleasant to deal with all the time. And I don’t mean I wish he were dead before someone tackles me on that. It just feels hopeless with an outcome that seems written in the stars and we have to walk a horrible path to get there. There have been many junctures on this road where I naively was hopeful that things were turning for the better and he could pick himself up and carry on with his life which ever way he pleased and leave us out of the fallout. But alas, we’ve had to get more and more involved.

We will consult with his medical team.

Thanks for understanding. When he had capacity we were worth less than the chewing gum under your shoe to him. We do what we can with what we have got.

She is aware and knows what is going on. The information only flows from us to her and never the other way around, she very seldom inquires about him or his health. If she is ever faced with a decision because she legally has to, I’m fairly certain she would abstain because it would be too difficult and it would revert to my DH. She is not equipped that way to cope.

I just wanted to pop up and say that I think you are being incredibly caring given the poor relationship prior to his diagnosis. I fail completely to understand why people are suggesting that you are not.

Re the scans, people suggesting he would automatically be scanned in the UK are incorrect. If his condition is inline with expected disease progression what would be the point in putting him through a scan?

I would absolutely have a conversation with the oncologist but it sounds like he is probably deteriorating in line with tumour regrowth/progression and therefore, given his quality of life and the fact that any further treatment will likely reduce this further I would only consider palliative treatment for symptom control.

It sounds really really hard. In future, once this situation is long past, I hope that looking back and knowing that you went above and beyond for this man will be of comfort to you and especially to your husband.

I think yourself and your husband have been wonderful.
I would encourage his daughter to have pleasant non combative visits whenever, so that she has a final memory for herself.
I would do everything you can to prevent this decision being on your husband and would look into letting him go rather than being dragged out.

Mind yourself OP, it reads as a long hard burden you have borne.

My DH has actually just spoken to him. He had a fall in the night and couldnt get back up. He is also 'angry' (his words) at his daughter as she promised to take him out to a concert and then never arrived to take him.

This is just an insight into what we are dealing with, with both of them. She cannot understand the mental impact of his illness and what her appropriate response to it should be. Firstly, he cannot go out to a concert, its just not feasible. He is a big guy and she would not be able to cope with a fall or assisting him with walking. She knows this, he doesnt, yet she will make these promises to him and then fail to deliver. Im not sure why she does it, I suspect she struggles to say no and be firm with him. I think she thinks its easier to let him down than to say no upfront. She possibly does this to make herself feel like she is doing something, like all the intention but then something 'pops' up that she cannot fulfill her promise. We on the other hand are very real with him, and thats why we have had to put a stop to him venturing out alone, as its not safe. She lets him believe that she would be able to pick him up in a car and they would be able to party the night away at a concert....

This is the recurrent theme unfortunately, not a once off. She will say she is coming to visit, he will wait around for her, and she will not arrive. Either they will have an argument about it or she will make up an excuse that makes her look like a angel (ie she is working or studying meanwhile Ive spotted her at the pub down the road).... I have tried to explain to her that when her dad is gone she is going to have to live with all the times she said she would do something for him and never followed through and that she should rather commit to something small like taking him a coffee and spending 5 minutes in the garden with him. But even that seems like too much. I also cant force her to see what I can see, she has her own complex history with him and I get that its hard for her to deal with.

She would never be able to deal with the decisions we are facing.

And, Im ok, Ive been blessed with a level head and sometimes a very clinical outlook on life which helps deal with these messy situations. My family are fairly stable and normal which gives me room to help my DH deal with his.

You sound wonderful and I am glad to read of your strength and stability.

Honestly, regarding your niece, it sounds like her rearing was a shit show and that absolutely will impact her ability to deal with this cognitively.

I would accept she is doing her best with the tools she was given during what sounds like a very difficult childhood.

The 20's are a very difficult decade for young adults where the failings of childhood are often crystallised.

I would accept she is doing her best.
She is too young to be burdened with such responsibility for a difficult man.
Wishing you well.

@HeavenInMyHeart people with disabilities can live full and happy lives, and if I was in your shoes I’d be doing everything I could to make sure that happened. But you’ve made up your mind, so I don’t know why you’ve posted here?

You do realise that brain cancer, while often resulting in disability as part of the progression, is not the same as disability in the context you are using it? Treatment is a real see-saw taking quality of life factors not account, it’s a real bitch this one. I don’t believe it’s a case of OP ‘not liking him’, it’s a case of really struggling to understand the benefits/risks/quality of life factor with this type of cancer.

As for the rest of your later diatribe about withdrawing fling medical treatment. That won’t be the case. He should have a treatment team who will take the lead with this and guide everyone. I’m smelling an agenda with your posts, and am guessing you are a euthanasia objector and have a ‘life at all costs irrespective of pain, suffering, indignity, poor quality of life’ for patients and are pushing this in the guise of ‘OP doesn’t like him’.

This sounds incredibly difficult and you have done way more than many would.
Dont know why you are getting a hard time from some people. it must be taking a huge toll on you as well as your dh.

Its stage 4 - that means multiple organs are affected.
his quality of life is poor and surgery (which is gruelling) wont necessarily improve that. So I can see why you would question the scans / surgery.

In your shoes I wpuld be led by the Drs and try and find out definitively the diagnosis.
I find a good question to ask is "if you were BIL, knowing what you know, would you agree to X?" If this was your mother - what would you do and why?"

Just because treatment is offered it does not mean its the "right" thing. Surgery recovery is horrible and the treatments can be painful and gruelling.

Separately ( and I know it will likely be hard if he is classic Saffa man) i would try and find a good therapist and get your husband into therapy. Even if you position it as being "for you" and you do it as a couple.

Good luck!

Love that people know the character of South African men without me having to say it! Luckily my DH is a typical tough and capable Saffa but still in touch with his emotional well being and has been open to therapy in the past to deal with his family relationships. He has done well to balance all of this duty and obligation with a whole pile of hurt and disappointment. He is a good guy.

Im no medical expert but I believe brain cancers are graded not staged because they seldom move out of the central nervous system like other cancers. So in this case high grade would mean grade 3 or 4 which refers to how aggressive it is and not stage 4 which indicates it has been found in other organs.

That being said, he is generally unhealthy and his other organs will be under strain. He has chronic hyper tension and is pre-diabetic and has significant edema either from the medication or from being sedentary.

Thank you for your thoughts. We are going to be guided by his doctors when they are next available to see us.

Stage 4 for brain cancers doesn't mean other organs are affected like it does for other cancers.

However given the brain is in charge of everything it ultimately has a knock on effect on how you eat, move, drink, breathe and everything else.

Depends on the type of tumpur and degree of successful resectuon, surely.

We have been told it could be decades, I am on a group with others who have been told the same and some who have lived 10+ years

The OP has posted the tumour type.