32 y/old sis with Stage 4 Glioblastoma- struggling

Hi,

Not one for posting on forums before but I just needed to reach out this evening. My wonderful and brilliant 32 year old sister has been feeling tired for a few months and all of a sudden shes been diagnosed with Gioblastoma stage 4, had 2 lots of major surgery, during one of which she suffered a stroke, she spent days in the ITU, has woken up with limited movement and speech and tomorrow we have a meeting with the pallative care team.

This has all happened so quickly. She was only admitted to hospital 17 days ago. Blessedly nobody in our family has ever suffered from cancer, but i am totally out of my depth. I have no idea what to expect or how to cope or help in any practical way. We are very close in age and my sister is my best friend and we say we are twins. It's just heart breaking and i feel so utterly useless and powerless to help her and its killing me I cannot do anything. I'm making her playlists and reading to her, smiling all the time I'm with her, but I'm putting on a brave face because I don't want to scare her.

We have plenty of support from friends and other family but i am usually the strength in our family so my parents look to me to keep everything together. I just feel utterly alone and isolated as usually whenever something's happens to me, i go to her for sensibility and support.

Its odd through the many offers of support, texts, and phone calls and people dropping on, i still just feel isolated and useless.

I just wanted to reach out this evening. I'm not even sad for myself, just gutted for her as shes so young and wanted to do so much.

Does anybody else get that? Despite the offers of help, anything they can do etc and someone to talk to just feeling useless and alone? I know some of her closest friends must be struggling too but i just feel totally disconnected if that makes sense.

  • Hi

    It's utterly devastating news to hear, the last word you want to hear is Cancer and yet all you can think about now. My husband was diagnosed with stage 3 multiple myeloma cancer the day before Christmas eve, I don't think I've ever felt such pain. We have a 21 month old son and all to live for, now I face the prospect of being a widow and single parent. I can't image what goes through my husband's head, we talk about his fears and hopes for the future, he fears he won't see our son go to school or walk his daughter down the isle, all natural feelings I guess. But we muddle through each day. He has devised his bucket list,  some achievable some totally wacky....I don't think Rory Mcilroy is available for a wee round of golf lol. 

    I get where your coming from, sometimes I feel like im in a room full of people but yet utterly alone. Family have been amazing and yes people say if you need anything let me know...but to ask for help even just an ear to rant is hard. My husband has the cancer yet I feel like it's effecting me just as much as him. I get so angry with everything it's hard to remember to take a breath and just be still. To watch is almost harder than to suffer. 

    I find talking to strangers easier and less of a burden here than talking to my friends and family. I feel like the future I thought I had has just been stolen and replaced with a *** one that I don't want. You need your sister just as much as she needs you, be strong for her. X 

    Stef

  • Thank you so much for taking the time to reply Stef. I really appreciate your kind words and about needing her just as much as she needs me.

    So sorry to read about your situation and your husband and your little boy, i cant imagine the additional level of stress it brings when there are children involved. Agree with you its like the future and plans you have have just been robbed and replaced with something rubbish you dont want and are powerless to change. 

    I also dont like to ask for help, when people say you're being so brave and so supportive, you also dont feel you can scream and say how much it's hurting inside.

    As you also say, I can't imagine what goes through her head day after day in the hospital she can't communicate to us properly so I'm just wondering and imagining things all the time.

    I think reaching out on here has helped, even just having somewhere to put something down last night when i felt very low.

    Xxx

  • Hello LionHeart30

    First of all, I'm so sorry to hear what you are going through.

    There is nothing about this that is easy - and you are being a kind and loving sister. Be brave and strong, and make sure you have someone to talk to, there is a lot of helpful advice on this site, so seek it out.

     

    My wife is currently in late stages with a stage 4 tumour - I wish you and your sister as much time together as possible, and I'd agree with chatting to strangers is easier for someone reason.

     

    Please keep posting and we will all help and be here for a kind word if and when you need it.

     

  • Hi 

    I was just wondering how you and your sister are getting on, I was thinking about you both and hoping all is well. 

     

    Stef 

  • Thank you so much for taking the time to reply. So sorry to hear about your wife, how are things at present?

     

    I'm doing my best to be brave and strong for now, i definately dont feel it but keep putting one foot in front of the other and every time I start to feel like i cant cope I remember that I can't let her down and im determined not to let the last days/weeks of her life just be full of people sobbing on her bedside and it pulls me back up. 

     

    Take care

    Em

  • Hiya Stef,

    Funny I hadn't logged on for a few days and just was wondered how things were with you and your husband aswell?

     

    Sister has kind of plateau'd really. She doesn't seem to be significantly worse but she also doesnt seem to be getting any better either. She is being fed through a nasal tube at the moment but she kept pulling it out in her sleep and then we were told the cancer would take her soon so they recommended "risk feeding" her as a pallative care thing, so she could enjoy tastes etc and not worry about how much of it goes down or her calorie intake. Which is fine but she cannot swallow and as the brain swelling doesnt seem to be getting worse and shes not mentally declining, I was concerned she would starve or her kidneys would fail from dehydration before the cancer took her and it just felt wrong to let her starve to death if she cannot get anything into her stomach without help.

     

    So they're back in with the nose tube, they've put a big padded glove on her working hand which she can't get off to pull her tube and we have yet another assessment meeting with the pallative care team tomorrow.

     

    For some reason I know the prognosis but the manner in which it happens and her level of comfort when it does have become the primary concern for me.

     

    Bloody cancer. Some days its just so punishing and brutal to watch but (as I'm sure we all do who watch our loved ones go through this) its just one day at a time and one foot infront of the other.

     

    Hope you are having better days with the mr and the little one

    Em

    Xx

     

     

  • hey

    things have plateaued here as well - she’s moving around on her frame, but is bed most of the time. There are signs of worsening but I’m remaining positive.

    You keep being brave and strong, and if you can’t be, that’s ok - just tell people what you need. One day at time, one hour at a time - she’s with you right now, for now.

     Not sure what else to say, but please feel free to chat at any point.

    We’ll be here

     

  • HI Em 

    Im glad your sister is doing ok, and hasn't negotiated. Watching is definitely harder, as you feel like the helpless one. My husband has had a few really bad days and spent time in bed sleeping. Mind you he was up like a lark this morning and away to the golf club. That's the good and the ugly side of this horrible cancer. 

    Always remember you are not alone when you can vent your feelings here, it's been a great source of comfort for me. Sending  hugs x

     

    Stef