During December our family and doctors have been trying to find out what was causing discomfort (and later pain) in my older sisters left abdomen.
My sister is 36 and has Neurofibromatosis and learning difficulties so my mother and I (me being 31) were trying so hard to help figure this out while also trying to keep her anxiety levels low.
We realised whatever it was, was growing, fast and as Christmas approached, time between appointments grew. A week before an ultrasound a week before a ct scan a week before a biopsy appointment and before we knew it, it had grown 3x it’s size and she couldn’t sit up straight without pain, we take her to A&E as she had gotten so weak and we are called that evening she gotten an infection and may not survive the night….
we are now a month later, she’s been in ICU this whole time on a ventilator and dialysis since the start of January. This last week she’s finally been awake and off all sedation and breathing for herself (but still intubated and on dialysis) . She’s been on some chemo, but all that’s seem to do so far is stop the tumours growth…and now we are waiting on discussions between the icu consultants and the oncologists on whether another round of chemo is on her best interest or not.
Im doing my best to try and comfort my mum. Going round to make sure she has breakfast, going with her to visit my sister every day I can, cooking dinner when we get home. But I’m terrified where this is potentially going and the effects this will no doubt have on her and us all.
Im terrified that my sister, is just sitting there now awake and fully aware of her situation unable to speak and frightened out of her mind. I’m scared the doctors are talking to her about all of this without us.
I have not experienced any loss of any friends or close family members in my lifetime i keep getting overwhelmed by this situation we’ve been thrust into. I’m such a control freak and having no way to control what’s happening is too much.
The doctors have concerns that my mum isn’t processing the information they give her well, so I want to always be their to absorb the information, and then pass it on to everyone else (dad, grandparents, siblings)
What should I do when I visit my sister? I love her so much, but we’ve always been such private people that im now left having no idea what’s on her mind right now, especially when she can’t speak. She’s always been so innocent, keeping to herself plodding through life.
Im scared that I’m not only going to potentially lose my sister but my mum as well and all I want to do is stop it but I can’t.
Hi @maggy,
So sorry to read your story. ICU is a really challenging experience at the best of times - Janice went it to septic shock at one point and so I ended up being a visitor for a week. Like you I do have a tendency to want to feel in control - but then I think most people do really and I had to learn something of the hard way our life was never really going to be like that again.
As Janice was often keen on reading the local paper I used to take it and read stories to her, it helped me to think I was doing something positive - if there is something your sister was interested in before you might try talking about that.
Being scared of the future at a time like this is incredibly common and one thing I had to learn was I had to make room for me. It was hard but we got there in the end.
<<hugs>>
Steve
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