Frustrated

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Hiya, I'm a mother of a 24 year old who has a inoperable brain tumor on her brain stem. She is currently stage 2/3 and we both want to know does anyone else just feel like we are waiting for that day when she dies? Sorry if it is harsh to put it that way but it's how we are feeling. She has 3 very young children and I'm her main carer. We can never take our minds of the fact she won't be there to see her children turn to adults and we feel very alone. Talking to family or friends just becomes awkward as they never know what to say back. She has good days and bad with her health and just wants to be a normal 24year old. We are struggling. Thanks for reading.

(Sophie's mum) x

  • HI NannyWoofWoof1 

    A very warm welcome to the group to you. Love the name you've chosen. Made me smile Slight smile

    So sorry to hear about what you and your daughter are going through. Life is cruel beyond belief at time. I can empathise with you here.

    My husband was diagnosed with a stage 4 brain tumour in Sept 2020. We know its not going to have a happy ending and have done since the start. There's plenty of days though I waken feeling as though we're just ticking the days off. 

    He got really emotional just after his diagnosis that he wouldn't get to do his "father of the bride" speech for our daughter. She got distressed that her dad won't be around if/when she has kids. (She's 22 and our son is 24) 

    Any diagnosis is a huge amount for anyone to get their thoughts and emotions around and reaching a level of acceptance takes time, if in fact it ever happens. 

    This group is a very safe and supportive place to reach out. I've also found a lot of support within Carers only forum - Macmillan Online Community so you might also want to join that group. Everyone around here gets it and understands. I know the feeling about not always being able to talk to friends and family. Their hearts are in the right place but they fortunately in most cases can't relate to what we are all feeling and living with. Within this group and the Carer's forum there's always someone around to listen, hold your hand and offer that virtual hug when its needed.

    It’s always good to talk so  remember you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    I don't have many words of wisdom here beyond those, I'm afraid. We live each day as it comes and make the most of it as best we can. My husband is six months outwith his "best before" date. They gave him 12-15 months and those ran out in Nov last year but he's still here, still physically very fit. He's a marathon runner and running remains his focus. Mentally is a different story. His tumour affected him cognitively and that's slipping. He's a bit like someone with dementia. It's so cruel to see.

    Stay strong. Stay positive. Sending you both a huge virtual hug.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hola Sophie,s mum, do you have a timeline? it is never easy, you have to do what you can when you can, look at all options not just what the doctors say. you have nothing to lose. Every one says Stay strong be positive but sometimes it is very difficult. once we accepted the fact , put everything in order and spent quality time together, Very difficult for the young ones i know . video what you can and save some wonderful memories.

    Love Mark 

  • Hi NannyWoofWoof1

    I am stage 4 had the operation, 6weeks treatment and still not curable.  I am 46 and have two children myself.  I try to remain positive, even though I know the cancer will catch me up.  Every day I wake up it is a good day even if I feel poorly because I am still alive.  I try not focus on the illness, just how I feel and what I can do that day to make me feel happy.  It's a terrible illness and is out of our control.  For me I prefer to talk or do something that takes my mind of cancer.  Sending my love as from seeing my family struggling I understand it's difficult.  My daughter is getting counselling from Dougie Mac which is helping.  This help is available to all family members and is a great opportunity to ask questions like this.

    Wishing you all the best Emma