End of life care

[Wadge]

Hi there

not quite the same but I have a similar experience but my eldest brother. Mark had a vicious melanoma, I think I have that right. It was virtually untreatable. 

He was only given 8 weeks from diagnosis, he lasted 7. 

He lived in Scotland & his wife found a great Care home for him. 

We all took 1 day at a time and tried to keep things as normal as possible but it was impossible to do this all the time. 

The one one thing we took from it all was that there was no right or wrong way of dealing with the situation. Nothing can prepare you for it. We took in old photographs, talked about all the good times, sat and watched TV with him. 

My wife is also fighting her own battle with secondary breast cancer which is in her liver & spine. 

It has changed our relationship but I’m determined that it’s not going to tear us apart. 

[britvik1985]

It is herceptin negative and has hormone receptors so they have decided to start her on palbociclib and letrozole. A bone scan revealed that aswell as secondary breast cancer been present in her spine and pelvis, she also has it in her arms and legs. They have said that they need to keep a close eye on her liver function as they may need to switch her chemo if there is a dip in that.

[Jandrews89]

Thanks ann-m. She is indeed I guess, which is something.

@ victoriamccormick That's a lot to take in over a short period of time. My Mum was very unlucky in that it was Metaplastic TNBC (It's rare, and I read varying sources giving figures of between 1%-10%) & it was Chemo-resistant.

Hopefully the prognosis will be positive. I know it didn't work out in our case but Cancer treatments these days are excellent. They can do a lot. Do you know what kind of cancer it is?

And don't let it get in the way of life if possible. I remember the day the oncologist gave my Mum the diagnosis. (1, 2 months but certainly under a year). I was on my phone the next day on booking.com sending my Mum and Dad off to Weston for a break (Had always wanted to go). At that point the brain was in relatively good shape and she absolutely loved it. I also went up one day and there's a lot of happier memories from that time.

Feel free to message me if you want to talk about anything.

[britvik1985]

I can understand how difficult it must be for you. My mum was diagnosed with breast cancer last week, along with secondary breast cancer in the lung, liver, spine and pelvis. We are waiting on a bone scan and will know this week hopefully what course of treatment they will give her. I am dreading them saying that it is too advanced to treat. She is 59 years old.

[ann-m]

So sorry to hear your news J & sending best wishes to you & family.

Thankfully, she is now free of it all.

ann x 

[Jandrews89]

Thanks for all of your comments. Unfortunately she passed away on Tuesday. She was unconscious for the last 2 days so hopefully felt no pain which is something I suppose.

What a horrible disease.

[Jandrews89]

I'm sorry to hear that Jobey. Unfortunately right now I know what a little about what you've been through. Thank you for sharing.

[Jobey68]

Hi, I am so sorry you are going through this , I had the same with my mum sadly and she was hallucinating come the end which was very distressing for us all. She stopped going up to bed as she was afraid of never waking up bless her and forbid us to put a bed downstairs for her but we had to eventually as she was sleeping on the sofa but the day it arrived she passed away that afternoon, it was very quick come the end which was a relief for us all as its so hard to see. 

Xx Jo 

[Jandrews89]

Thank you.

Got some nurses and such helping out yes. Not much they can do really but they're very nice and doing as much as they can.

From a personal point of view this has always been one of my worst fears. Seeing somebody lose their mind before their life so to speak, it's like losing someone twice if that makes sense. The deterioration has been quick and vicious so far. She has a special bed downstairs but she couldn't settle tonight. Kept asking me to get her into bed. Of course I'd tell her she's already in bed and she would say "I know" but then repeat the same question again. Eventually in tears at the frustration of wanting to go to bed.

So yeah, secondary brain cancer is nasty and wicked to say the least. I'm trying to take comfort in the fact that she's not in any pain (Where would we be without Morphine) but it's not helping as much as I wish it would.

[ann-m]

Hi Jandrews,

So sorry to hear about your mum.

I haven’t been in this position, so I don’t have a similar experience to share, however, I just wanted to acknowledge your post as this is a quieter part of the forum. 

Are you in contact with the local hospice &/or palliative care team?

Also, there’s info on the main bcc site here, or do give the helpline here a ring if you feel you need to talk it through. 

Sending best wishes

ann x

[Jandrews89]

My mum found a lump around July last year, "Probably benign" was the initial statement I guess, but they wouldn't know until biopsy was done. Biopsy was done shortly after, it wasn't just cancerous but Metaplastic TNBC, a very rare type. Intense chemo followed and we thought it was going well really. Lots of changes in her mood and dietary needs among other things, not unusual.

However, soon after the chemo finished we took her to hospital due to intense neck pain and balance problems. She was kept in for various scans and unfortunately it had spread to the Brain and Spine. All of this during quite intense chemotherapy. It was completely chemo-resistant.

Outlook is 1-2 months possibly, but no more than a year. I won't forget hearing those words from the doctor for a long time. That was last month, and she's getting a little worse with each passing day. She's 63 years old. Seeing her suffering with such a vicious form of cancer is difficult to say the least. Words don't really do it justice.

Lifes a lottery I suppose, be lucky. Would be interested to hear from others who've been in similar situations on making these last few days weeks (Hopefully months) as comfortable as possible.