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My lovely brother - stage 4 rectal cancer

183 replies

CloseYourMouthLynn · 08/02/2022 14:17

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.

OP posts:
CloseYourMouthLynn · 25/06/2022 20:05

Thank you everyone. Hard day today as my brain tries to compute things. I can't tally up the image of my dying brother with him. With kissing his cold dead body. I feel like I'm living under water. We told my daughter today that he had died so that she knows why I'm so sad and why he won't be there anymore.
I can't believe I won't see him again.
I went to message him earlier and then remembered.
I'm glad he is no longer suffering but I would give anything to have him back.
Thursday seems like a lifetime ago.

OP posts:
NCnamechange · 26/06/2022 00:46

I'm sorry for your loss, CloseYourMouthLynn but glad for you that you could be with him at the end.

My eldest brother died of AIDS more than 25 years ago, and we were fortunate enough to be with him too. He was only 49. Like you, I was glad his suffering was over, especially as the HIV had got to his brain, his essential brilliant self was long gone. Sad

It's a privilege to be with the dying as they go, and I hope it will be a comfort to you.

Flowers for you.

octoberfarm · 26/06/2022 00:55

I'm so incredibly sorry for your loss, @CloseYourMouthLynn. Your brother sounds like a truly special man, and I'm so sorry you had to say goodbye Flowers

newfriend05 · 26/06/2022 22:31

I'm so very sorry OP siblings are indeed so very special sending you lots of love x

CloseYourMouthLynn · 27/06/2022 12:00

Thank you everyone. Really struggling. I can't believe he's gone and I'm quite traumatised by being there when he died and kissing him goodbye. I feel like I've been hit by a bus.

OP posts:
FreeRangeFloozy · 27/06/2022 12:28

It’s so, so painful. I’m so sorry for your loss and your suffering. Can you try to be still for a few minutes and breathe, you know like babies do when their tummies rise as they breathe in? It’ll help ground you.

As painful as it is, don’t push the feelings away because that makes it worse. Try to let whatever come at you and then it will pass, I promise. It is likely to be very up and down for quite some time. For me it was about 3 weeks before I could go out without bursting into tears. Xxx

CloseYourMouthLynn · 27/06/2022 16:28

@FreeRangeFloozy thank you. I collapsed in tears on the kitchen floor earlier as a song came on the radio that was playing on the drive back home from the hospice after he had died. My 7 month year old son looked very confused. I don't feel like I'm parenting very well right now. I don't want to go anywhere or do anything. I feel so lonely even though I have lots of family and friends.
I'm sorry for your loss also. X

OP posts:
SantaMonicaPier · 28/06/2022 07:29

Feeling for you, it's normal to feel such shock and abject pain. Please consider options such as counselling if needed though. I wish I'd pursued that myself after a bereavement.

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