How can I help my sister?

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I’m living in Australia. My sister had her craniotomy yesterday, I’ve booked my flight and I’m on way over tomorrow to be with her to help her recover. 
Any tips on how I can help her while I’m in uk? Her speech is quite slow at present which I’m told is normal for 1 day post surgery. And she tells me she’s still tired a lot and her head still hurts, can someone tell me if this is normal post craniotomy? 

  • Hi Sarah - that's so great that you're coming to look after your sister! X

    I had a craniotomy two years ago and remember the speech difficulties well. And the tiredness of course - this is all very normal, it's a major op. She should have pain meds to take home, but hopefully she won't need them for long. The tiredness lasts longer but will improve gradually. Can I ask how old your sister is? (I was 50 and recovered pretty well if that helps.) 

    Just having you there to help is going to be the best thing. Encourage her to have naps whenever she's tired, and never to exert herself. And just be there to talk when she needs it, but basically just be normal.

    One more thing - make sure she has a Clinical Nurse Service number to call with questions. You can feel a bit lost when you get home from the hospital, and it's still very new.

    And ask anything you like here - sending you and your sister love xxx

  • Thank you so much for the reply. 
    my sister is 36 years old. 
    I’ve been watching patients who’ve had craniotomies and one thing that is highlighted how bored they get because of tiredness. 
    do you think it would be a good idea to hire a wheelchair so I can push her out in the fresh air for a walk? Or would this be the last thing she would want to do. 
    can I ask how long you waited for your biopsy results from the craniotomy? My sister is being told 6 weeks. I was hoping she would get results whilst I was with her so she has support. 
    I’m really not handling this well at all. My sister seems ok with everything but I think she’s hiding her feelings. I’m scared I’ll fall apart when I see her on Sunday. Her speech worries me. I rang her this morning to see how she was, I could tell it was a effort for her, she only stayed on the phone to me for 2 mins and said she wanted to go. She sounds exhausted. 

  • 36 - that is young, but it will count toward her recovery. I’m really feeling for her though, and you xx

    I didn’t have to wait 6 weeks, but hopefully she’ll at least get a date for her appt before you leave, so you can plan ahead. I was told I couldn’t bring anyone with me, but all the oncologists said that’s not true, so pass that on to her. Whatever the news, it’s good to have someone with you. 

    You’re quite wrong that you’re not handling it well - you’re scared and worried for your sister, which is quite normal, you’re coming across the world to help her, and you’re researching the best way to help. I don’t know what else you could do. Go easy on yourself - she’s not the only one who’s dealing with something difficult Heart

    the wheelchair is a good idea, but maybe ask your sister if she’d like that. Can I ask where the operation was? Depending on the location, she may not need a wheelchair at all, just a short accompanied walk (even just indoors) - see what the doctor say,

    and look after yourself Heart 

  • Hi Sarah

    a warm welcome to the online community. Sorry to hear about all that you and your sister are going through. Life's cruel.

    I supported my late husband through his stage 4 brain tumour journey and remember that in the early days post-surgery he was quite slow and confused. What you have to remember is that she's been through major surgery and although the wound on the outside may look small, there's a lot going on inside. Post-op swelling is common and can make symptoms seem worse for a week or two before they get better. It takes time to recover from the op just any other major surgery.

    As for how you can help her - by just being there for a start. I'm sure she appreciates you flying over to be with her. Be led by what she wants/needs and feels up to. There are no hard and fast rules here. My late husband was very physically fit and within a week or so of his op was wanting time alone. he would disappear for hours on end while he went for long walks. It was his way of coping but my heart was in my mouth every time he went out the door. Others on here have commented that their loved ones just wanted to be home and with friends and family, 

    My rule of thumb throughout the 3 years of G's journey was it a symptom was worrying me, I'd reach out to the medical team to ask about it. We're not medically trained and aren't the experts so if you need to check on anything you're concerned about, do it.  There's no such thing as a silly question.

    This is a safe and supportive space so please reach out here anytime. You're not alone. We've got you. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. 

    For now I'm sending you both a huge virtual hug and lots of positive energy. Stay strong and remember to take care of your wee self too here.

    love n hugs

    Wee Me xx

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

  • Hi there and you’re great for going to help your sister. Family counts and you’re a good one. Those all sound like my symptoms I had after surgery. I was out day 11 with no clips so stay strong for her and encourage her that things can get better. Colouring books is all I’ll say. It’s not over tenuous and you can stop and not dwell on things like a puzzle book might do. But we are all different. I’m still tired one year on but radiotherapy can take it out of you and chemo can be just as unhelpful. Rest is good and peace. But distractions once a day give you that inclusion back into the world

     ASK anything of anyone here, we’re all here to chat/help each other x