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.

Such sad news. I'm keeping you in my thoughts.

Bastard cancer.

I am devastated for you, OP, having lost my own brother last year to pancreatic cancer. He was diagnosed in his 40s and had 4 good years. But still, his death was a shock and very sudden. We knew it had returned but still, the doctors had told him and his wife that it was a rare form of pancreatic cancer that wouldn't return, if ever, for another 20 years. So to be told that only to learn that there really is no such animal and he had bog standard shitty, good ol' reliable life claiming pancreatic cancer after all, was traumatic.
Sorry for the rant and upset. It's just shit because you grieve from the moment of diagnosis. And then hope sees you through and encourages you to believe that survival is possible. Then reality comes to call and it's just too sad to face.

You are left to become the writer of your brother's unfinished history and the keeper of his flame, which will surely burn brightly in your heart and give you strength when you think there's none left.
I am sorry I have no advice, only love and sorrow. I know your path. I feel your plight. And it is devastating. I am so sorry, OP.

Hi OP, firstly I am really sorry about the metastises in his brain, that is really rotten news for him and for you. I would imagine your hormones are all over the place too, so yes, you will be crying and that is normal.

As a family, we have always been incredibly practical so the first thing you can do to help is talk to the MacMillan helpline to make sure he is getting all the financial help he is entitled to, and on a quick search I found perennial.org.uk/ which is a gardeners support charity and may be able to help too. There is also support for his children, which MacMillan will talk you through. Make sure that you as a family and his wife get some time to decompress, shout, rant or just howl at the wind as you will need that break tol work your way through the next few weeks as care plans are put into place

Now hard as this might sound, try not to think in terms of miracles, but think in terms of making every day count for him and his kids to make positive memories and you should try to do the same, too.

Cancer is a fucking bitch.

I'm so sorry to see your update 💐

@TheVanguardSix I'm really sorry to hear your story, I relate to it all and it is exactly right, we have been grieving since his original diagnosis, been given moments of hope along the way, so to hear that it has spread in such a brutal way and his time is definitely coming to an end is so shocking and surreal.

He messaged me on Saturday night to say he feels the end is near. I didn't know what to say and said the wrong thing and probably disregarded his feelings.

I ran around the house earlier trying to find things with his handwriting on. I hope we have time to talk but I do not want to push him and he is also very weak and shocked and angry so he may not even want to, I don't want to push my needs onto him.

They couldn't have their wedding due to lockdown so had to get married just with a few people. We lost so much time together due to covid, I will always be angry about that.

@2bazookas I'm sorry for your loss, it's so young.

It was the hospice nurse who took charge and got him taken to hospital yesterday so he is under their care in a sense. I do not know yet what will happen in the time he has left. I wouldn't imagine they want their son to see him dying in their home.

My eldest (half) brother is very practical and lives there and is helping with the essentials in terms of provision for his family. He didn't have much money as it is but is the kindest person I know.

I feel the absolute same, OP. My brother was in the States and Covid kept us apart. It takes daily strength not to feel bitter about it. We lost time. And time is so damn precious. Now I spend all my time just thinking about him. Just carrying him with me. My grief has become my safety blanket. Hugs to you, OP, a million of them. I feel your sorrow and I know your pain. All you can do is love, useless as that sounds. Love really is a superpower, I have come to learn.

@TheVanguardSix hugs to you also, I'm so sorry for your loss and I hope you can continue to hold your brother's memory with you always.
I am only starting this process and I'm so scared, there is still so much sadness to come and it's overwhelming.

Just want to say I've been thinking of you this week OP. Will you have a chance to visit this weekend?

So sorry to read about your darling brother. I lost my brother 16 years ago, totally different circumstances but was heartbroken. I hope your dB is as comfortable as possible and you get to see him xxxx

@YukoandHiro yes hopefully I will get a chance to visit and say goodbye this weekend, he only has a few weeks left - I can't believe it, he must be so frightened. Both my children currently have chicken pox, great timing.

@WingingItSince1973 thank you, sorry about your brother. I'll never get over him not being in my life anymore.

I'm so sorry to read your update. Cancer really is a bastard.
My mum ended up with bone then brain cancer last year, so whilst a different relationship I know the anger, fear and sadness all too well.
You are starting the grieving process now. I honestly think I cried more in my mum's last few weeks than I have since she's gone.
As for your parents not coping, they will. My mum's mum is in her 90's and is coping. Some days, some hours better than others. I know that sounds harsh but somehow, somehow you just do.
Finally, you need to look after yourself too. Your brother, parents and children will all need you over the next few months. You need to look after yourself in all this.
I really am so sorry you and your family are facing this x

So sorry to hear your update. It must feel like your whole childhood is going with him in a way.

Do you have photos you can look at with him to refresh childhood memories before he goes?

My mum says seeing her dad's handwriting still makes her feel sad and happy after many years. She's got a shopping list he wrote pinned to her fridge still. (It's a photocopy, the original saved away somewhere but all the same....)

I hope your brother's passing is as easy as it can be for him and for all of you. I'm sorry

@User280905 that's exactly what it feels like, he is my whole childhood, my partner in crime for so long and I'll have lost that.

I started to look at some photos yesterday but it was all too much and I broke down. I will be led by him I think, unfortunately I don't think he is even strong enough to talk right now. Thank you for your wishes

I'm so sorry.
Just sit with Jon and hold his hand.

My DH died at home of exactly the same thing, including the brain metastases. My DDs and I sat with him and shared silly memories and laughed a lot in those last days. It sounds strange, but the laughter is what comforts me when I look back at those times.
I don't know about Jon, but my DH wanted life to be normal around him. So if he's the same, don't be afraid to be your normal self.

All the very best to you all, and I hope these last weeks are comfortable for him.

@saraclara I'm so sorry for your loss and for your DDS, I hope they are doing okay?

He really wanted to get home but unfortunately I don't think there is time, it just feel like he's been let down a lot, even his original diagnosis was piles, there are so many what it's.

Even though my loss is great, I feel so sad for his wife and young son, it will change the course of their lives forever.

That's so sweet of you. Thank you. It's been a few years, and of course we miss him still, but we're doing fine and we're happy again. I'm so proud of how our girls helped nurse him and have dealt with their loss. I hope that helps you see a happier future (eventually) for your SIL and their children.

My DH was also misdiagnosed with piles. I tried not to dwell on that, because I knew I'd just go mad, and there was nothing that could be undone by thinking about it. But I do know that there was an internal investigation at our GP surgery after he died, because the last GP to deal with him read his notes and realised that he'd been badly let down, with the cancer being widespread stage 4 before anyone actually sent him for a colonoscopy.

I'm sorry that it seems that your brother was let down in other ways too. But I hope that everything will be on hand for him and the family now. Take care of yourself.

@saraclara , that's so nice to hear, I'm really pleased that you and your daughters are in a happy place, I really do wish you well for the future.

I am thinking of doing a memory book for my nephew with childhood pictures and memories etc, and we are having one of my brother's watches engraved to give to him on his 21st birthday - it's just all so sad.

I'm very sorry that this happened to your DH too, it's so frustrating. The whole journey has been a series of errors really, to the original diagnosis, to a gp diagnosing his brain spread as a migraine and his oncologist saying only a few weeks ago that there was no extra spread and now it's in his bones, blood and stomach and it's too late. It's hard not to feel angry isn't it but I think the final outcome would have been the same in most ways. For now we just need to be with each other and tell him we love him.

The memory book is a lovely idea! One of those things that will helpfully occupy you now, and be of huge value to your nephew in the future.

And yes, I'm terrible for dwelling on minor things, but surprisingly, I was able to put the misdiagnosis aside. Which is a blessing, because I'm sure that otherwise it would have been a much harder road for us all.

I hope you can soon be together, and that it will be a positive and loving time for you all x

@saraclara thank you, I really appreciate it. All the best to you and your family too. X

@CloseYourMouthLynn your love for your brother is felt in every word you write about him. ❤️

So sorry about your brother x

My brother died at 6pm tonight. We were all there as he took his last breath. I still can't believe it.

I am so sorry, what a huge loss for you all. My love and sympathy to you.