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Picture of Topic  'Today I am feeling' - managing emotions

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Topic 'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 186 conversations

like I'm in limbo...

Started by Anonymous on 26 July 2016 at 17:42

My mum was diagnosed in February with a grade 4 glioblastoma (very aggressive brain tumour that is incurable) and I don't know what to do to help now. She is mostly well at the moment with days where she is tired. She has had a 6 week course of radiotherapy along with chemo tablets, but that finished mid april after the 6 week stint (that seemed to last forever) they were going to carry on with the chemo but her platelets were low so stopped. 

Our problem is mum doesn't want to know anything.... prognosis or anything or didn't want to see the scans of her tumour before the op or after. ...and now after treatment has finished I have no idea what's happening because she hasn't asked and banned us all from asking anything.... or even going with her (which I can understand) but I just feel useless. She had an MRI today... so I guess the results of that will determine where they go from there..... she was orginal told she had anything from 3 months (without treatment) to a year ish with treatment. I'm just so confused. 

Then I feel selfish for feeling angry that she won't let me ask anything or help her. Am I being selfish? What can I do to help her other than make happy memories? X

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  • Picture of Tombenefits
    From Tombenefits  
    28 July 2016 at 12:19

    Hello,

    Others can share their experiences around the feelings and ways forward when people have very different information needs between carers and the cared for.

    And part of that is because you want to be there and prepared to support her in the best way possible. You ask what you can do to help her apart from making happy memories?

    Just being there for her day by day, to gently support her in bad days or make the most of good ones is really waht it comes down to even if you had all the information. 

    Another area you can help with is the practical one of finances to help her make the most of those good days and fund any extra comforts on the not so good. There is one important extra benefit that does cross into the difficult information territory you mention, but there are workarounds.

    Regardless of her income and savings, your mum is very likely to be automatically entitled to an extra "disability benefit". If she is aged over 65, that would be Attendance Allowance or if she is aged 64 or under then it would be Personal Independence Payment.

    These can apply to many people with cancer even when things are far less advanced than it seem is the case for your mum, far less advanced, but often that  involve a bit of an assessment process.

    Where cancers are more advanced, there is a short cut through all of that leading to an automatic award for 3 years and renewable after that.  

    Now your mum may not want to go there for fear of having to confront information or have conversations about her cancer and prognosis that she doesn't want to

    But unusually in the world of benefits, this is one where someone else can make the claim on her behalf. Her specialist can provide the necessary DS1500 form which contains only information about the diagnosis and proposed treatments and care e.g. palliative that you already know.  It does not record any  prognosis.

    Please though do not think a DS1500 confirms your worst fears. The DWP description of the criteria for it is unhelpful or wrong - it does not mean that someone has less than 6 months remaining, just that that could be a possibility among others. Remember that the award is made for 3 years and can be renewed.

    I will message you if would like to discuss this benefit further in private or to check out any other benefits that your mum may be entitled to.

    I know this is only a small thing in the huge emotional journey but would agree with all Sue's wise words from my own travels along that path. But hopefully it's another  small bit of practical support you can offer your mum :-)

    Best wishes

    Tom 

    Online Centre Benefits Advisor 

     


  • Picture of SusieQ
    From SusieQ  
    28 July 2016 at 10:23

    I think the follow up appointment for her scan with the oncologist, will be the time when the treatment's success or not will be discussed. It's an information giving appointment - and the chance to discuss any further plans for treatment.

    Perhaps you could phone her nurse specialist ahead of the appointment and say what the difficulties are, and some of the sort of questions that are troubling you as a family. She or he can then be aware of the issues at your mum's next appointment, and alert the consultant. They'll respect your mum's wishes - but also may be able to give her pertinent facts that are relevant now.

    Hopefully that will help...

    Warm wishes

    Sue


  • From Anonymous
    28 July 2016 at 09:24

    Thank you so much. 

    Mum allowed me to speak separately to the specialist nurse who told me prognosis and things after her first diagnosis. But since then every appointment she says "don't ask any questions I just  want to get in and get out.....it's boring being in here"

    I don't even know the results of how much the treatment helped if anything. 

    She told her partner off for asking to see the scan before her op to removed it. 

    You see I thought mum wouldn't have had treatment due to the side effects of losing her hair etc.... she surprised us all when she said she wanted it. We were happy but surprised. Now I think without her knowing how much the treatment has helped... if they offer more treatment she'll just say yes....she hated having the treatment you see.... hated going everyday and how tired it made her.... so I think she needs to know how much the treatment helped or not....so she can make an informed decision as to have more treatment if offered. I think she'd prefer quality of life and to feel like herself if the treatment only gives her time and doesn't do much to the tumour itself. 

    But we can't even discuss this with her. She tells us to stop and gets sad or angry. 

    X


  • Picture of SusieQ
    From SusieQ  
    27 July 2016 at 10:50

    Hello,

    It sounds as though, for the moment, your mum is fairly stable - but I can empathise with the need to know what to expect in the future.

    It can feel frustrating when someone with cancer halts any discussion or questions about the future. Your mum may be coping by dealing with the 'here and now', feeling too daunted to ask about her prognosis...and not wanting anyone to raise the subject either.

    Some of what happens next may be determined by her MRI results, when they'll be looking to see if the tumour has returned or grown bigger. You're not selfish wanting to know what those results are, and might mean, as for you...it's trying to prepare for any decline in her health.

    A prognosis is based on averages...and therefore your mum could be either side of the figures she was originally quoted.

    Perhaps you could discuss with your mum that you'll respect her wishes regarding the information sharing - but that in turn, she should let you know if/when things seem to be getting any worse. Explain that you care about her and want to help. Perhaps ask her what would help at the moment? Then, it's possibly a case of taking things a day at a time, which is sometimes easier said than done.

    There are online members reading this, who will recognise the frustrations you're feeling, and hopefully will give some tips from their own experiences...

    You can also message Robyn or myself at any time to talk through how this is affecting you - it sounds a tough and emotional situation...

    Warm wishes

    Sue

     

     

     

     


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