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I just don't know how to handle this

Westerel
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Hi everyone,

I've never posted on a forum like this before, but I've been reading lots of posts & it helps me feel less alone in facing this horrible situation that we all seem to be muddling though together! 

The past few days have been really hard & I know there is worse to come. I work as a health professional & see people facing end of life care & decisions often in my workplace, but being on the other side is incredibly difficult, and i am wishing right now that i did not have the background knowledge & experience that i do.

My lovely mum has metastatic breast cancer in her lungs, liver & spine. She finished her last round of chemo in October & had been doing really well & we all had a lovely Christmas together. I came home to visit this weekend & immediately noticed a big change in my mum's mobility & behaviour - She was confused & muddled at times & falling asleep often, & just appeared quite 'vacant' at times (i don't know how else to describe it). I immediately suspected brain mets & after several phonecalls managed to speak with a wonderful Breast Cancer nurse who listened to my concerns & spoke with my mum's consultant. They have now started mum on steroids & she is waiting for a slot for a CT head this week. 

I fear from experience that the scan will confirm what I already suspect & I feel physically sick thinking about it. My dad & siblings are understandably worried about her but i don't know how honest to be with them, as I know that if Mum does have brain mets, she may decline very quickly & it is a very cruel way to go. My family have been making plans with mum for later in the year & I don't want to take away hope that she might not be here for those plans, or be well enough for them. I have walked this road with other families through my job, trying to make life a tiny bit better for them knowing what is ahead, but i don't know how to be strong & do it now that it is my own parent & my own family.

My dad & siblings have been asking me lots of questions & i really don't know how honest to be with them about how quickly things could go downhill from here or what other symtoms mum could have or what other treatments the doctors might have, because the answers I have are probably not what they want to hear. I feel stuck & numb, but i know my family are looking to me to guide them through this because they know it's what i do at work, but it's really hard when it is my mum we are talking about.

Thanks for reading, & i wish you all love, courage & strength with whatever situations you are facing right now x

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    Hi there ...

    Who cares for the carer ... when everyone is looking to them for answers and strength... well you need to care for you now ... I've a feeling you know what you'd say to someone in your position ... you need to LISTEN to your head and heart .. 

    Nothing prepaired us for when it happens to us ... in fact having expierance makes it so much harder .. when I worked as an auxiliary on maternity... the worse patients were midwives ... coz they knew what could go wrong ... 

    If it were me, I believe gentle honesty with your family is the way forward ... when I had my masectomy and was sure I'd never come through ..my amazing wonderful 5 year old granddaughter asked me if I was going to die ... I told her nanny was very poorly and the Drs at hospital were going to TRY to make nanny better .. and if I did, I'd be that little star next to the bright one which we'd always said was my mum's ... to look down on her every night .. she was content with that and even out of hospital, she knew my breast was gone .. and I told her the Drs needed to do that to help me get better .. 

    I found if everyone is honest .. and share feelings.. you can all walk this same path with your mum .. otherwise if you take it all on.. you'll walk a path alone, while they are looking what path to take .. it will be the hardest thing you've done .. but admitting your all scared , and sharing tears mean everyone can show emotion .. it's o.k to feel anything .. but together .. you can tell them what might happen, which can prepare them if you are right .. but be gently honest and say you won't know for sure till mum's scan ..

    So be kind to your heart ... and admit your not super woman... just human .. and do the best you can, while caring for your feelings too .. big hug Chrissie

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    Hi Chriss

     

    im so sorry to hear about your mum.

    my dad has secondary liver mets and has been told he has weeks, but he has since deteriorated so quickly that now we're told this week. It started six weeks ago with a chest infection to now being told he is dying. I am an only child and a mother of two small children myself with my mother just recovering from lung cancer. 

    My world has stopped and I am broken. Watching someone you love die is gut wrenching.

     

    i would say be kind be gentle but be honest. Throughout all of this myself and my mum have fought so hard for honest answers...

     

    sending you love x

  • Offline in reply to lou34

    Hi Chrissie & lou34,

    Thank you so much for your very kind & helpful words. I'm sorry i haven't replied sooner. The last few weeks have been a blur, mum has deteriorated so rapidly & we are now making end of life decisions. It's very hard to get our heads around this - how did we end up here?! Family & friends & palliative care all hugely supportive, but it's massively difficult to come to terms with. 

    Lou34, I am so genuinely sorry to hear about your dad. I have no words except you & your family will be in my thoughts too. Such a cruel disease.

    Sending much love & strength xxx

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    Hi I am sorry to here this I no it’s hard my husband took I’ll on 24 January and had tests done and would tell me anything thing that the doctor said he was 9 stone and is 6 stone now yellow in a lot of pain on morphine and a lot of pain killers I no he’s not got long to go he’s sleeping all the time not eating don’t drink much mind is bad to very hard when he would talk to me about it I crying when he’s sleeping family not great to it’s hard to night he could walk I had to help him I can’t sleep not nice it’s good to talk to someone with the same a great group of people so sorry for you to thanks for this.

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