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Life-limiting illness

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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.

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saraclara · 09/02/2022 19:15

(I only explained that because palliative is a misunderstood term, and people often think it's only about the last few weeks when all hope is lost - it's not)

CloseYourMouthLynn · 09/02/2022 19:17

So I just had a very brief call with my brother as he is back from Marsden.

For the immunotherapy to be an option, which isn't a trial, I was wrong about that, he needs to have 1% of a protein in his original tissue sample taken from the original tumour site, there is a 60% chance that this protein will be present.

He has an appointment with his oncologist and a neurologist on Monday to discuss other treatments to run alongside.

The waiting continues. He is still being astoundingly positive and speaking as though this and that will be an option in a years time. My heart is aching.

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CloseYourMouthLynn · 09/02/2022 19:18

@saraclara, thank you.

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Oli5 · 09/02/2022 19:19

I have no advice but couldn’t read without sending you lots of lovexxx

Hasselhoffsheadband · 09/02/2022 19:21

Oh I'm so sorry to read this, cancer is so cruel.

I'm sure the Marsden will be on it, but is cyberknife an option for the brain lesions? I know of a few people that have had this now (mostly for breast cancer brain mets but I assume it's a similar thing) and there have been some amazing results.

CloseYourMouthLynn · 09/02/2022 19:21

Thank you @Oli5. X

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SheldonesqueTheBstard · 09/02/2022 19:22

Fat hand for you Lynn

Waiting is never easy. Flowers

Lemonweightloss · 09/02/2022 19:24

@CloseYourMouthLynn, I've been a bit stressed today over something really rather stupid. Reading your post has made me stop and think and whilst I do appreciate the good things in my life, I need to do it with a little more intensity.
Sending you love and strength and if you don't mind, remembering you and your family in my prayers 🙏 ❤

FlorrieFosdyke · 09/02/2022 19:46

So sorry to read of your brother's diagnosis.

I just wanted to come on and suggest you check out the horticultural charity -
Perennial
perennial.org.uk/home/ways-we-can-help/

They offer all sorts of help specifically for gardeners. It would definitely be worth calling the helpline.

You sound so lovely and I am sure you will provide lots of comfort and support for your brother. Make sure you take time for yourself too.

CloseYourMouthLynn · 09/02/2022 19:54

@Hasselhoffsheadband thank you I have just mentioned this to him and said to ask the neurologist about it on Monday.

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CloseYourMouthLynn · 09/02/2022 19:57

@Lemonweightloss that's very kind, thank you. I still also get stressed over trivial things, it's human nature. It doesn't make anyone's problem more or less important. I'm lucky to have such a lovely brother and I still have so much more than so many people. Thank you again. X

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CloseYourMouthLynn · 09/02/2022 19:59

@FlorrieFosdyke that is so useful, thank you so much. I just want to make sure that he is happy every day. Every day that I don't call him because I'm tired I feel guilty and it's so hard not to look back at times that I've spoken about him in annoyance. I make sure I tell him I love him as much as possible now. X

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MaChienEstUnDick · 09/02/2022 20:11

Ah OP. You just have to be there for him, and that's sometimes really hard. My DB's wife (whom I adore) is unrelentingly upbeat and positive about DB's diagnosis (he has secondaries after bowel too) and I sometimes feel like the punching bag for the dark humour and the black moods. But that's my job, I'm his big sister.

Phone him, text him. Get him or his wife the practical support around benefits. I do a lot of nodding and smiling: 'yeah, I know nothing's happening this week bro but let's get that appointment booked with anyway.'

But, as you say, the hardest bit of it can be the family dynamic. I have a very difficult relationship with my DFather and even just the sheer amount of time I'm having to spend with him is driving me up the wall. Let alone with DBro (who is close to him) telling me how I need to step up and look after him. That bit of it is really, really hard.

I will keep you and your family in my thoughts x

MaChienEstUnDick · 09/02/2022 20:12

[quote CloseYourMouthLynn]@FlorrieFosdyke that is so useful, thank you so much. I just want to make sure that he is happy every day. Every day that I don't call him because I'm tired I feel guilty and it's so hard not to look back at times that I've spoken about him in annoyance. I make sure I tell him I love him as much as possible now. X[/quote]
Yeah, but make sure you also call him a dick head or poo head or whatever level your sibling choice of insults is at too. Remind him you're the favourite child and how he tried to get off with your pal at the school disco. All that stuff is important too.

Sprig1 · 09/02/2022 20:13

I don't have any experience or advice to share with you but wanted to say that you sound like an awesome little sister and he is really fortunate to have you. Don't forget to look after yourself as well.

SouthernFashionista · 09/02/2022 20:17

No real advice as what you’ve been given already is just brilliant but I’ve had my own personal experience of cancer and know how it turns your world upside down. I just wanted to take a moment to send you love and strength. And in the midst of it all, please try and look after yourself too. Flowers

CloseYourMouthLynn · 09/02/2022 20:19

@MaChienEstUnDick oh yes, I already told him that he has to always make things so complicated! And I've just sent him a mug with a peep show mug in the post in the hope that it might make him laugh.

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CloseYourMouthLynn · 09/02/2022 20:19

@MaChienEstUnDick peep show quote that should read!

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CloseYourMouthLynn · 09/02/2022 20:22

@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

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CloseYourMouthLynn · 09/02/2022 20:23

@SouthernFashionista, I'm sorry to hear that and thank you. Sending you best wishes. X

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CloseYourMouthLynn · 09/02/2022 20:24

@Sprig1 thank you, I'm sure he would say I've been a very annoying little sister at times but I hope he knows how much I love him.

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cptartapp · 09/02/2022 20:25

You say your brother's wedding couldn't take place due to Covid. Just considering practicalities, from his wife's perspective, is he legally married?
I'm so very sorry for what you're all facing.

WhenIsItTooLate · 09/02/2022 20:27

Oh OP this thread has made my heart hurt for you all. I’ve no experience with this situation but just wanted to come and send you and yours lots of love and best wishes. My 3yo DD started off at the Marsden (although we’ve moved now so her treatment is elsewhere) and they are just so utterly amazing and wonderful and brilliant up there. He’s in good hands. I hope against hope that somehow it works out for you all ❤️

CloseYourMouthLynn · 09/02/2022 20:28

@cptartapp yes they managed to get married thankfully, when the rule of 6 was allowed, they just couldn't have what they had planned. I saw the photos and videos and they looked very happy. My sister in law sold her wedding dress and wore a £20 off the shelf one from monsoon as it was all very last minute.

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CloseYourMouthLynn · 09/02/2022 20:34

@WhenIsItTooLate, goodness, you have a 3 year old going through treatment. I cant even comprehend, you must be amazingly strong. I have a 4 year old daughter. I really wish you and your family all the very best and thank you for your wishes. Xx

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