Not sure what to do for the best

We found out on Tuesday that my 28 yr old son who lives with me has a diffuse brainstem glioma . Its inoperable and have been told can have radiotherapy as a palliative measure. We are seeing oncologist next Thursday . My son wants to know his prognosis. He's struggling with his walking and balance , his swallowing and sometimes his breathing .

I've not been in work ( behavioural unit with challenging teens) this week . Do I go in work until Thursday but risk snapping or breaking down . Then make a decision after Thursday ?

 

 

  • Hi there ..

    I cannot comprehend how any mum can cope with what your going through ... it's a mum's and dad's too worse nightmare, and as a mum who nearly lost my son a few times to servere hypos ... I can only say, it still gives me flashbacks .. my heart goes out to you ...

    I can only say if it were me, I'd put work on a back boiler, and if your wage is needed contact McMillan as they can give financial help in those cases ... l think your right, I think your trying to hold yourself together and be strong ... but there's a point we brake and realise wer not super human, just human ... l hope you are getting some respite with family .. please take every offer of help .. and yes you could just "loose it" at work .. 

    Take as much time with your son as poss ... no matter their age, they are always our babies ... you can always call on people here... there's quite a few have been in your position ...

    Sending you a big hug ... and your son too ... Chrissie

  • Thank You for your reply . I've spoken to my go who has said stay off work definitely until next Friday so we can digest what oncologist tells us. Also thinks I'm not in the right frame of mind for work .  Has put a note on the system if I phone back to put through to him.

    I'm supposed to be going away this weekend but obviously hesitant . Son has assured me he will phone if needs help . Has his 18 yr old sister at home  and is insistent I go . So why so I feel bad . Because family are saying how can you leave him at this time . 

     

  • Hello Leesec (and Chriss).  Don't take too much notice of family telling you not to go - this is your life and your awful situation so do what feels right for you - both your son and daughter feel it is right for you.  Nobody else can understand what you are feeling.  Is this cancer similar to Diffuse Intrinsic Pontine Glioma that is a childhood cancer - if so this is a dreadful blow to have your son diagnosed at his age.  Thank goodness you have a good employer - so many people don't.  We here feel so helpless to say or do anything that might help you but what we can give is time to read what you are going through and to try to help you through (if this is possible) so please let off steam and set out your worries at any time.  Annie

  • Hi there ...

    Just maybe, those couple of days will help you think and process what's happening ... then come back with a clearer mind ... they might need a bit of bro / sister time too ..

    Listen to your children.. listen to your heart ... and stop caring about the rest of the world .. everyone has opinions ... we can't please everyone... so build a wall up with you and your babies .. hold on together .. listen to each other .. others can help, that's great ... but this is your 3 journey right now ...

    Big hug to all 3 ... Annie thinks so too, and she's pretty good at seeing things and how they really are ..

    Chrissie

  • Thank You both . I'm at the train station with strict instructions to phone me if Any emergency.

    Annie , yes unfortunately it is . Not the best prognosis but will keep encouraging him to fight . He thinks I've got false hope but any hope is better than none x