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.

Hi @yikesanotherbooboo, thank you, I will make sure he does. It is unbearable but all I can do is look at practical ways to help. I wish I could swap places with him.

I have no experience. I am so sorry. How utterly devastating for you all - sending love & praying he recovers.

I’m so sorry to say but if he’s got spread elsewhere then it’s not curable. However, immunotherapy can prolong life and radiotherapy and gamma knife can be used in certain circumstances on brain mets.

If he contacts Macmillan they should be able to advise about benefits. He may have to stop driving if he has brain mets sadly. The marsden should have a Macmillan or cancer support team that he can speak to.

Hi @Mammma91, thank you very much. I think we just have to hope that he can have some treatment to make what time he has left enjoyable.

To look at him you would never even know he has cancer and it is so easy to forget he has it and bury your head in the sand. Then you remember and want to scream and shout at the unfairness of it all.

I'm rambling now, but as his sibling I don't even know what my place is in this process. He's my big bro and I can't imagine him not being here and my children not knowing their lovely uncle. And I feel so terrible for his wife and his 5 year old son, I can't imagine what she is going through.

Thanks again to everyone who has posted, it has really helped getting it off my chest. Xx

Hi @QueenCremant, yes unfortunately that's what we need to come to terms with, my parents and his wife are still not coping with that information and so not believe it but me and my siblings are trying to encourage discussion, it's very difficult.

We need to be led by him and what he wants to talk about I suppose. We're hopeful that some treatment may be available to prolong life but it's the not knowing how long this will be that is unbearable.

He has already stopped driving which is a blow to his independence. I picked him up and drove him around places last weekend, I'm sure it wasn't fun to be carted around by your little sis!

I’ve no advice. No words to take away your heartache.

My siblings mean the world to me. One is fine. One has a life limiting illness with steady deterioration but with hopefully a good while left yet. But we don’t really know where the road will take us.

Like you, I’d swap places in a moment. It just seems so unfair.

Just reaching out with a fat little hand of comfort. 🌻. Life can be so cruel sometimes. x

Hi @SheldonesqueTheBstard, thank you for your really kind words and I will return your hand hold and I really hope your sibling has many more years with you and your family.

Siblings should be with you throughout life and it is unnatural to think of him not being with me. My other siblings are my older half siblings, and although I love them so much, this is my big bro who I spent my whole childhood with, who loves telling embarrassing stories about me. It will kill my parents.

There are no words to make it better and as a problem solver I find it so hard to know what to do to help. Getting teary now while typing this but I suppose it is cathartic.

He is on his way back from the Marsden with my dad now - my dad is driving and is nearly 80 so I'm sure that's a terrifying experience in itself!

Thank you Lynn (I adore the Lynn names on here!)

It is just the shared experiences. Joined life stories. And love. And knowing you always have someone who ‘gets’ you and has your back.

I’m the viper of the family. The one everyone turns to. The one who makes things better. The one who sorts things. The one who makes everything manageable. (On the whole anyway - I sometimes break when no- one sees! But that is how I manage)

It is bloody unfair when he is so young. I will keep you in my thoughts. May it be managed as well as you can hope for and may you get time.

Viper? There’s an apt autocorrect. It was supposed to be coper…

Oh OP - my story is nearly identical to yours.

My lovely brother had a non-specific germ cell testicular cancer diagnosed in 2011 when I was pregnant with DS1.
Despite the amazing care at Royal Marsden in Sutton, and all the trials they put him on, he died in June of 2012 after the cancer spread from his spine to his brain. He was only 28.

My DS1 was 9 months old, and I also live very far away (4000 miles away).

All I can tell you is that I fully understand about the anticipatory grief. It's the overwhelming feeling of utter complete hopelessness and grief to think of the fear they must be going through, what his wife is going through and all of you.
I started seeing a grief counsellor when my brother decided to enjoy what time he had left - I knew it was going to hit me hard after he passed.

It will hit you hard and I'm so sorry. My brother passing left a massive hole in our lives - at least my sister and I were able to be together to help our parents (and SIL) through it. But it is a very tough road, because despite all of you suffering the same loss of someone you love so much, grief itself is so completely individual.

I know that the morning of 14 June 2012 at 9.05am when my brother took his last breath, we were all holding him, all with him and giving each other support.
The grief that came after was for ourselves. It was a dreaded mix of relief that he was no longer suffering, and the agony of knowing we would need to learn how to live without him.

I'm so truly, truly sorry that you're facing this. I do write this with tears in my eyes because I know only too well what you're going through.

I won't give you any bullshit about time being a healer. It doesn't heal, it just mutes the loss.
When I picture my brothers loss, I can only visualise it as a massive gaping black hole in our lives. At the beginning it was extremely raw, and bloody and agonising. Over time the hole is still there but the edges have softened. Less painful to touch, or think about.

I ran a marathon 9 months after my brother died to raise money for the Royal Marsden ward where they looked after him, and also for my local chemo unit here. It was cathartic, and something I wanted to focus on. But absolutely don't put pressure on yourself to do something you're not yet ready to do though, especially with a young baby.

Grief is an emotional injury that takes a lot of love and care for ourselves to get through.

Please do PM me if I can help, but I hope by sharing my story you know that there are others that have been in the same place and are in various stages of "the other side".

All the best

@SheldonesqueTheBstard, yes love an AP inspired name!

Yes it's exactly that, the shared times, the times he has been there for me when a boy was mean to me, he took me to my first gig, probably gave me my first spliff and I immediately passed out etc. He was always the black sheep really, my eldest brother, sister and me are all very driven whereas he has always gone with the flow, which I think has helped him cope really.

It is just so cruel that he finally met someone and started a family and then this. And then covid, which fucked up everything and has meant I lost a lot of time with him, but Boris was fine ay. There's the anger coming out now!

Thank you again for your kind words and I totally get you about the coper (although I like viper too!), all the best to your family. X

I'm so sorry about your news, OP. My DH had the same diagnosis and the same spread. He was doing very well and the chemo had shrunk much of his liver and lung metastases, until the first we knew of the spread to his brain was when he collapsed.

This was more than ten years ago, and though his brain lesions couldn't be operated on, he had radiotherapy that shrunk them for some time, and apart from not being able to drive, life went on as normal for five or six months.
I'm afraid that the disease did eventually claim him, but ten years on, and with the option of an immunotherapy trial, I hope that things work out differently for your brother.

My daughter's MIL is in an immunotherapy trial for another cancer, and is fit and well three years after she was supposed to die. Things are coming on so fast. All the very best.

@Strokethefurrywall, my goodness, your story has left me in absolute tears and thank you for sharing it.

I'm so sorry to hear about your brother. He was so young and I'm so sorry to hear that it was so fast and that you did not get very much time with him. Your story about being with him at the end is devastatingly beautiful.

I feel as though I'm living in a surreal bubble and this is happening to someone else. I can't imagine not speaking to him, not seeing him, not hugging him. I want time to freeze. I want to go back to when we were kids.

I am trying to encourage my parents to speak with a counsellor, which they won't do. I think I need to do the same because I need to process this, how do I come to terms with him dying when he is still alive? It makes no logical sense. None of it does.

That's amazing that you ran a marathon, a real achievement. I have signed up for a 10k in may but think I'll probably be walking.

Thank you again for sharing your story, it really meant a lot to me. Best wishes. X

@saraclara, thank you for sharing your experience and I'm so very sorry that your husband was unable to benefit from newer treatment. I hope you were able to enjoy some normality with each other in the last months. X

This charity will be able to help for him to get all the benefits he is entitled to including pip. www.maggies.org/cancer-support/managing-practically/money-benefits-and-cancer/

If his doctor or nurse fills in a ds1500 form, that should help things along and may also allow him to get a blue badge, disabled travel card etc.

Brain mets don't necessarily mean the beginning of the end, treatments such as radiotherapy can be very effective.

As mentioned in a previous post, get in touch with Macmillan, it has specialist welfare rights people who can fast track PIP claims, ours was sorted within three weeks.

@AKAanothername

As mentioned in a previous post, get in touch with Macmillan, it has specialist welfare rights people who can fast track PIP claims, ours was sorted within three weeks.

Yep. Someone from Macmillan visited us, sat on our sofa and filled in all the forms for us for benefits we didn't even know existed. DH got his blue badge within a fortnight instead of six months, as Macmillan has a fast track arrangement with the DVLA (or whoever it is that issues them)

My best friend died of brain metastases last year. Sorry, I realise this is not what you're looking to hear.

Point is though, it was very important for her to have the time to make decisions about ending treatment and palliative care. Start looking into your options as soon as you can face it. It made a massive difference knowing her well looked after

Hello, @CloseYourMouthLynn. I'm so sorry. I've nothing more to offer but good wishes for a good outcome and a peaceful, painfree ending if it comes to it.

Do you have access to MAGGIE'S centre? they can offer a lot of help and advice to cance r patients and the family. all free.

www.maggies.org/our-centres/

Macmillan Cancer also have useful info, booklets, trained nurse advisers, websites and online support groups for patients and family ( about different kinds of cancer). DH (now in remission) still finds the online discussion/support groups invaluable; I suspect he lets his hair down to strangers in the same boat, in a way he won't to me or anyone he knows.

If there is a local hospice they can help your brother too (including at home).

Your SIL needs as much information as possible as fast as she can get it, which is a very real way you can help and support them.

Sorry for your parents but their escalating alcohol use isn't the priority just now. Don't let it distract you from DB and SIL and caring for yourself. .

Hi, goodness thank you to those who have responded with brilliant advice sjnxs I've last been on, I was getting the kids to bed and now waiting impatiently for my brother to call with news from his Marsden appointment.

Thanks to all the recommendations for the Macmillan benefits, I will suggest that he looks into those and also i had looked at the Maggie's charity just earlier and was going to suggest he contacts them and also I told my parents to go to them for help too.

@ThreeLocusts, I'm sorry to hear about your friend.

Thanks again everyone. You have all been brilliant. I'm so glad I posted, I've been too much in my own head all this week. X

If he gets to the stage where he is palliative he is entitled to a benefit called DS1500 .It will take away some of the money worries if he gets to that diagnosis.

Didn’t finish….. the Ds1500 kind of rubber stamps all benefit applications and speeds up the process as by definition those who are given the DS1500 are too unwell to wait for the slow process of benefits applications

Thank you @hp2

@hp2

If he gets to the stage where he is palliative he is entitled to a benefit called DS1500 .It will take away some of the money worries if he gets to that diagnosis.

You don't have to wait until any treatment is withdrawn, to be considered palliative, OP. My DH's treatment was considered palliative pretty much from diagnosis. Not because he was a hopeless case or that anyone was giving up on him. But simply because the treatment was considered to primarily be (but not completely) to extend life, rather than completely cure.

Macmillan weren't involved until the brain metastases became evident, but they might well have been earlier had we contacted them ourselves. But the medical team contacted them for us at that point.