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  6. Brain mets, final days? What can I expect?

Brain mets, final days? What can I expect?

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Brain mets, final days? What can I expect?

28 Mar 2023 00:44

Hi all,

I know I'm asking people to share difficult experiences. I just hope people can let me know what is ahead. I appreciate every experience with cancer is different. 

My mum was diagnosed with bowel cancer October 2020. Tumor removed but it had already spread to her lungs. 

The tumors in her lungs stayed stagnant for a good while but 6 months ago one started to grow. She now has a met on her brain of 4.2cm. 

Can anyone share their final days? She sleeps a lot. Confused with reality,  very quiet but still with it in some ways..eating great but on steroids. 

Mobility not good..using equipment to get her to the toilet. Sleeping a lot. 

Sorry if this painful to share but I need a bit more info. I've moved in with her and cherishing every moment I can tell her I love her and hug her. 

Thanks

Helen 

Brain mets, final days? What can I expect?

30 Mar 2023 10:18 in response to Helen1977

Hi Helen,

Welcome to Cancer Chat. I'm sorry to hear about the situation with your mum - this is a lot to deal with and I hope you're getting on OK. It sounds like you're doing a lot in terms of caring for her and making the most of your time with her.

I know you're looking for others to share their experiences, so hopefully you'll get some more replies here soon. I can see you have also reached out to others on the forum which is good.

I hope that the forum can be some support to you - we're always here if you need it.

Keep looking after yourself too, and wishing you all the best,

Ben
Cancer Chat Moderator

Brain mets, final days? What can I expect?

1 Apr 2023 20:54 in response to Helen1977

Hi Helen,

Hope you are OK and your mum is comfortable. 

My mum passed away in Dec after lung and brain mets from breast cancer. After she had a seizure from brain mets and was put on steroids, wasn't herself - sometimes hyper or childlike, and didn't sleep much. 

In the last 5-6 days, she was a bit more calmer and had at times more lucid. She was very weak physically and very aware of this - started to say she had no power and was going. She was bed bound by then and couldn't lift herself in last 4 days. Slowly she started to 'sleep' more (semi-conscious) and couldn't be roused at times - she seemed restless in her sleep state. She started eating less and 1.5 days before she passed stopped eating and then drinking the final day. She was not conscious again but seemed to move towards me when I spoke to her at times. She passed in her sleep and finally looked rested with a small smile on her face even. Appreciate everyone's experience is different. Wish you all the strength at this time 

Brain mets, final days? What can I expect?

1 Apr 2023 23:51 in response to TanyaS

Hi Tanya. 

Thank you for reaching out. 

I am so sorry for your loss and the journey you have had to go on. You never understand what someone goes through when they tell you they watched someone die of cancer until you have to put those shoes on and walk the same path. It's awful watching a loved one go downhill. 

I appreciate your support. Having someone know what you are going through is priceless. 

Sending so much love your way. 

Helen x

Brain mets, final days? What can I expect?

6 Apr 2023 02:04 in response to Helen1977

Hi Helen,

I am so sorry to hear of what you are going through. 

My mum had breast cancer for 12 years, before it developed in her brain, liver, lungs and bone. She managed well until the last 6 months of her life, when she had a lot of pain. She spent her last months in a hospital and moved to a hospice just days before she finally passed. She slept a lot latterly and ate and drank less and less, but they were able to control her pain better once she went into hospital. Eventually she couldn't get out of bed and became incontinent.

My brothers and I were still speaking with her on the day that she died and it was really only in her last couple of hours that she became more disturbed. One thing to remember is that, although someone may appear to be unconscious, the last sense to go is their hearing. Chances are that they can still hear what is being said, even though they may appear to be asleep.

You are going through a particularly hard time. Try to ensure that your mum is as comfortable as she can be and that her pain is well controlled. Medication may need to be stepped up or changed towards the end too. Spend as much time as you can with her, ask any questions you may have and don't leave anything left unsaid. Let her know how much you love her.

It can be very difficult to look after someone single-handedly. There is help available from carers to see to your mum's personal needs, if you feel that this would help. We eventually had carers coming in 4 times a day to see to my mother-in-law, who was bed-bound for 6 years before she died. This left family members with some quality time to spend with her.

You will find the strength to see this through and I commend you for stepping up to the plate to see this through.

I am thinking of you both and am always here for you.

Kind regards,

Jolamine xx

Brain mets, final days? What can I expect?

6 Apr 2023 08:21 in response to Jolamine

Hi Jolamine, 

Did your mum receive any treatment when the cancer had spread? 

When my mum's cancer spread to her lungs she refused chemo and now it is in her brain they won't do radiotherapy because it is elsewhere in the body.We are managing symptoms through steroids. 

She isn't in any pain. I'm worried that may change however her Oncologist did say we can hope for her to sleep more and more and then slip away. That can happen in brain mets. 

I have pencilled in a carer to come stay Friday week but then I hate the thought of leaving her in someone else's care at night in case something happens and I'm not with her. 

Thank you for responding

Helen x

Brain mets, final days? What can I expect?

6 Apr 2023 08:26 in response to Jolamine

For got to say I also have carers coming in 4 times a day who help so I'm not doing it single handedly. They help with getting her dressed and cleaned. It's great to have them. I couldn't do this without them. 

 

Brain mets, final days? What can I expect?

6 Apr 2023 23:48 in response to Helen1977

 

Hi Helen,

Mum died 26 years ago and treatments were no where near as advanced as they are nowadays. She was offered no treatment, other than pain meds. We did have to watch that these were adequate and had to get them topped up a few times. No ending is the same, some are peaceful, whilst others can be quite harrowing to watch.

I am glad to hear that you have carers coming in to see to your mum's personal care. There is still plenty for you to do, but this does give you some better quality time with her. Don't beat yourself up about having to leave her in someone else's care overnight, next Friday. You have got to look after your own health too and sometimes you need a break. I am sure that if something did happen, her carer would alert you to the fact.

People often find a slot to slip away when family are not about. I spent the last week with my mum and was there 24 hours a day. On the day she died, one of my brothers arrived at the hospital and didn't believe that the end was as close as I told him. We went outside her room to discuss this and by the time we stood outside her window, she had passed. I have never really forgiven myself for this, but it is the way that she would have wanted to go.

I'm always here for you.

Kind regards,

Jolamine xx

Brain mets, final days? What can I expect?

7 Apr 2023 08:42 in response to Jolamine

Thank you for responding jolamine but please if anything let go of that guilt. 
I have heard this happen to others and the simple fact is (from my understanding) they don't want to let go for your sake and therefore when given the time alone they are able to slip away without their loved ones having to watch them die. 
The district nurse did say I have no control over when mum will pass and to take the help and go home. 
She rests a lot but it has been 6 weeks since the bleed on the brain and the discovery of the brain met so I do think she will continue to decline slowly, in fact she seems to be getting a bit more determined, gets up every evening and sits in the living room listening to her children chat. That's why I need to start organising respite so I can see my family. 2 weeks away from home and I just want a little bit of my own life every now and again. Keep in touch with reality. 
 

I'll try and find you an article about people slipping away when everyone leaves the room. It makes so sense and might give you some reasoning to why x

Brain mets, final days? What can I expect?

7 Apr 2023 14:31 in response to Helen1977

Hi Helen,

Although I still regret not being there for those last two minutes, I have come to terms with the fact that this is what my mum would have wanted. Your district nurse is right, nobody can predict when someone will pass. Many people who get a prognosis, live years past that time, whilst others pass much sooner. At best, the prognosis is just a "guesstimate".

My mum declined slowly within the last six months of her life, but my father-in-law was diagnosed and died five days later. We were told that at best, he would have 2 months. You do have to make some time for yourself, so please don't feel guilty about it. Remember that if you become unwell you would have to rely on carers even more. Do you have any family or friends who can support you at this time?

Kind regards,

Jolamine xx

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