My lovely brother - stage 4 rectal cancer

[CloseYourMouthLynn]

Hi, thanks in advance to anyone who reads this, as I need to get it off my chest and wonder whether anyone has a similar experience. My brother is 40, and has a lovely wife and 5 year old son.

About 3.5 years ago he was diagnosed with rectal cancer, we thought they'd removed it and he had a stoma fitted. Unfortunately, it spread to both lungs and liver. Various rounds of treatment later and quite recently it was looking more positive, with talks of him taking part in an NHS immunotherapy drug trial at the Royal Marsden and the tumours showing minimal growth.

Then a week ago, he had headaches and sickness. A GP, who clearly didn't read his notes, prescribed him painkillers. My eldest brother forced him to go to the hospital and a scan confirmed that it has spread to his brain and he has two lesions, one around 3cm and one 9mm in the right frontal lobe.

We are all beyond devastated and I can't stop crying about my lovely brother and the idea that
we actually might lose him to this horrible disease, which I assume is now advanced incurable. He is being positive as can be. My parents, who have always been heavy drinkers, are turning to this and being angry with the rest of us, understandably I know but they have a history of alcoholism. His wife, who attends all the appointments, thinks he can be cured but my sister and eldest brother both know this is unlikely but don't know how to even broach this with my parents.

Unfortunately I live a couple of hours away from them all but have offered to attend appointments as I'm on mat leave.

Sorry for the essay as I suppose I was wondering if anyone else any experience of anyone with secondary stage 4 brain cancer who defied odds or what we should expect realistically?

Thank you to anyone who reads and replies.

[quote CloseYourMouthLynn]@MaChienEstUnDick and I'm very sorry about your brother too. I hope he is well as can be? I have a very complicated relationship with my mother and I've always been more like the parent so I totally get how stressful it is to navigate this horrible journey when you're all on different thinking paths.

Best wishes to you and your family too, I wouldn't wish this on anyone. X[/quote]
Thank you, he is doing well just now. They've given him a break from chemo for a few months which is fantastic and he is recovering his strength. However it is very much a 'break' and we know that he's now in a cycle of chemo/cancer shrinks/no chemo/cancer grows/chemo/cancer shrinks. It's really just a case of how many cycles of that he can take.

@MaChienEstUnDick, my brother is on a similar cycle. I hope your brother gets rested up. Best wishes to you and your family. X

So sorry op and all those who have shared their heartbreaking stories 💐

Not sure if anyone will read this, but today my brother was told that the cancer has spread everywhere - his stomach lining, bones and blood. He has two months maximum. I can't process it, it doesn't feel real.

@CloseYourMouthLynn
I am so so sorry to hear this update.

oh I am so sorry to hear this. It is so v unfair. There are no words to help I know but sending you love and thinking of you and your lovely brother. x

I didn't see your original post until now. I'm so sorry for the devastating news.
Much love xx

I didn't see your thread initially but i'm so sorry to read your update today. It's an awful time for you all.

Did your brother manage to sort out some benefit support? Does he have life insurance which will help his wife and child later this year? I know you aren't living close by but helping them sort out the practicalities in advance could be something you could help with.

I'm so sorry for you and your whole family. Cancer is so cruel. It took my DH's younger brother at 34.

Xx

Am so sorry to read this update. You must all be absolutely devastated

Do you want to talk about him? Best memories, things you want to do together?

Awful news; there is nothing we can say to help I know, but hand hold here

So so sorry to read your update

So sorry to hear, brothers are so special. I lost my lovely older sister to stomach cancer six years ago. I can still remember the shock and disbelief that we were going to lose her it didn't feel real.

Thank you everyone. I'm numb but also can't stop crying. It is all happening so quickly. I hope I get to see him. I'm hoping to go this weekend but also my daughter may have chicken pox.

His name is Jon, he is 41 and has a wife and young son.

He is my whole childhood, I will have noone to recall those memories with. I will never hear his voice again. I will never see his handwriting again or have a message from him. My children won't remember him (my youngest is 6 months).

I feel so guilty about all the times I was horrible to him/about him (normal brother/sister stuff).

What do I say when I see him?

My parents won't cope. What will his wife do, she will be on her own with a young son, she does have family nearby but also in Australia so may go there, who could blame her, although will I still see my nephew.

I am rambling. I am heartbroken

@YukoandHiro I believe this is all sorted for now, but will see if I can help in any way

Oh OP,I’m so sorry to hear about ur brother. Cancer is unbelievably cruel. Sending you the biggest hug 💐

They'll cope, OP. They won't have any alternative but to take each day as it comes.

Please get in touch with Hope Services or Winstons Wish for your nephew.

Talk to him now about those memories, on voice record on your phone when you're next with him. Save them on the cloud. Ask him to write down his favourite books and songs, you'll have his handwriting and things to remember him by.

People fear death mostly because they don't want to be forgotten. Take every memory he can still give and save them on postcards for yourself and his son. Make him feel remembered.

So sorry to hear this 😞

So so sorry to hear this news. I'm keeping you all in my thoughts.

So sorry, it must be so hard, where I live we have a couple of charities that make wishes come true for people, could you look at something like this to make a special memory for your nephew and you all, once again so sorry

So so sorry to hear this, cherish the time you have with him I hope you and all the family can find the strength to get through x

Unmumsnetty hugs x

So sorry to hear this OP. Sending best wishes and support!

My brother's primary cancer spread to his bones then brain and killed him.The brain metastases were fast and pitiful.He was 37 with small children.

I'm very sorry for the distress your family is going through.

Just a couple of practical suggestions, in case you haven't already done these.

make use of local hospice expertise. Even if he wants to stay at home, they can offer invaluable outreach services including expert preparation/ support for his wife and children. My brother's children really benefited.

He needs to make all necessary legal and financial preparations right now; by which I mean, writing a Will, creating an advance medical directive and creating power of attorney to a trusted person (nearby)to make sure his medical-care wishes are honoured. Please encourage this while he still has capacity; it can make a real difference to everyone.

His poor wife needs help to fully acknowledge his late stage so they can face it together. Don't let her later regret "things I wish we'd said".

I'm so sorry,@CloseYourMouthLynn . I lost my lovely brother to liver cancer in 2017. In his case, he'd gone to ask for a PSA test for Prostate cancer because my husband had been diagnosed via a PSA. He had no symptoms and the GP didn't want him to have the PSA test. My brother insisted, and within 3 days he'd been told he had cancer in his prostate, liver, lungs and bones. So although I don't know about the brain cancer, I do know about the grief you experience when someone is diagnosed with a terminal diagnosis. You need to take care of you too.

as his sibling I don't even know what my place is in this process.

When my brother was dying, he liked to talk about when we were children .

You are the holder of his past life story; all those memories his wife and children don't have. Talk to him about his childhood, share the memories and photos and write them all down to keep for his child to have in future.

(((HUG))) I'm so very sorry to hear Jon's 'update'. Life can be bloody unfair. There are no words that can change anything, but I hope the support helps a little bit.

sorry to hear about little DD & possible chicken pox.

I hope you can get up to see Jon soon. Stay close with your SIL & Nephew, hopefully she'll choose to stay here, but if she goes to Australia FaceTime is a wonderful way to maintain relationships with kids.

Cancer is a bastard.