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The brutal truth

victoriag
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Me: 

32, married, 1 sister, dog and trying to hold down a job.

my mum:

65, kind, caring, loved to dance, loved true crim. diagnosed with stage 4 lung cancer 2020 June. Ups and downs since then. Had spread to her neck so bed bound the last month. Currently on a driver, pain is not being managed well and she is now extremely weak, not talking and barely opening her eyes. She seems on pain and it feels like no one is doing anything.

 

I suppose by now like everyone else I'm fed up of having to "tell the whole story". I have lost all emotion when repeating the same thing to different people.I'm angry at our local services and feel that no one even mentions what it's like at the end. Miscommunication, trips back and forth to the pharmacy, arguments with family as you all want "what's best".  All this whilst trying to manage  to spend last hours and ensuring loved ones are comfortable and that your there.
 

I spend ages trying to Google what will happen, how long it will be and end of life stages. This has been more helpful then our local services.  My mom is in pain it's not being managed and it horrible to watch as I'm helpless.

I suppose I'm asking for the brutal truth. How long does it take, is anyone else going through the same. How long is she going to be like this. 

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    Hello Victoriag.  So sorry about your mum.  You have asked for the brutal truth and here it is:  It sounds like your mum has only a matter of weeks (possibly days) before she passes.  I know this because I not only lost my own mum to cancer, but so many other friends and relatives.  I am so sorry, I truly am, but you deserve the truth, Violet, xxx

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    So sorry you are going through this.

    I presume you have already seen the information on this site, but in case you haven't am putting a link in for you to read if you wish.

    www.cancerresearchuk.org/.../last-few-weeks-and-days

     

     

  • Offline in reply to victoriag

    Hiya.

    This thread is very similar to what you're currently experiencing. She's a very nice lady, and is probably one of the best people on here that can relate to you, and offer you some advice on how to deal with people dealing with your mum for both your mum's sanity and your own. [@Dor06]‍ 

    www.cancerresearchuk.org/.../stay-strong-31

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    Others have answered the "what's it like" . My question to her GP and nurses would be "why isn't her pain being managed effectively?" 
    MacMillan nurses in general are fantastic but my Dad and I argued at length with them over pain management, in particular balancing the clinical risk between a morphine overdose and getting pain management right. In the end the GP prescribed very high levels of medication than they wanted to give and her pain management came back under control.

    How long seems the hardest question to get an answer to. We were told "within the next 2 or 3 days" for 2 or 3 weeks but I've known people die within hours of a syringe driver being connected. 
     

    Best wishes

    Dave

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    hiya,

     

    im so sorry to hear what you are all going through.

     

    my mu. passed away on 29 may frm stage 4 lung cancer, we only found out she had cancer a mere 7 months ago.

     

    like your mum, my mothers pain was not managed especially towards the end. the cancer had spread to her hip and she was in agony. they gave us abstral and oxynorm but it wasnt working. in the end she was on a huge doseage on driver and we were calling district nurses to inject her to sedate her. i know how horrible it is seeing your mum in pain and feeling helpless. the only thing we could do was to keep her asleep and hope that she was dreaming 

     

    take care and love and hugs to all xx

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    Dear Victoriag, my heart goes out to you as my husband suffered in the same way.  Its so extremely hard to see your loved one suffering and feeling that very little is being done to help.  I begged my paliative care team to put the syringe driver in but they refused to do it saying he had weeks or days to live.  How do you fight that, you can't they will do what they think is best, not listening to the closest relatives knowledge.  So my way of coping was to ring the district nurses who should be on call 24/7 the paliative care team will have their number.  I didn't hesitate to call, any accidents in bed I rang them, crying out in pain, I rang them.  Even at 2.30am I rang them and they arrived and administered an injection to help him sleep.  Use the resources available to you and don't be frightened to do so, do you know you can have a night sitter to sit with Mum, to give you some relief, we could not because the hospital had given him Covid so no help but it's there if you need it.  Just remember that you have to get through this and still have the strength to cope with your loss when it finally comes.  When Norman died I spoke to the paliative care team who still had refused to put the syringe driver in and told them that at their next team meeting they should have on the agenda that loved ones know best.  I'm so sorry to hear what is happening and I send my love.  Carol 

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