lalupes
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Dearest Jose
My sister’s Hospice doctor told me they realise they know far too little about this disease and said that Susan “doesn’t fit any cancer-pattern we’ve ever seen before”. It’s so incredibly hard to assess timescales. They suggested we work on the basis that she didn’t have very long but that they genuinely didn’t know. We got the 12-hour call 4 times in the past month and were told she only had days 6 months ago.
By the time she was as distressed as Carmen clearly is, and I was internally begging for her to be out of pain and distress, it was not very long at all until she was.
You are going through the Carer’s nightmare, as I and many others have done. We are all holding you in our hearts.
XX
I’m glad the Hospice is caring for her, Jose, taking some of the pressure off you and your family. My love and thoughts are with you all.
Julia xx
Dear Mary, I’m so very sorry to hear of your dad’s death but am glad he is no longer in pain. I lost my lovely sister the same day.
My love to you and your family
JuliaYou haven’t done anything wrong or insensitive, Jose. I just remember that in the “early” stages of Sue’s illness I wanted to know everything, in the middle stages I felt more sensitive and didn’t wish to read certain sections of the discussion boards and towards the end I was scared of learning anything which might show me her time was imminent and I avoided sensitive threads. It’s not that these comments should not be written – they really must be aired and these boards are definitely the place to air them – but, as Gavin said, everyone has different needs and wishes and, if I’m writing something I think I may have wished to avoid at an earlier stage of my sister’s cc journey, I’ll put up a “warning” to alert others.
I hope that helps. Please keep telling us everything you wish or need to. We’re all here for you and I hope my experience helps you cope, just as your experiences are helping me realise it was the disease which was messing with my sister’s personality and that she was still the same loving sister who’d always supported and loved me.
Jxx
SENSITIVE
I can’t really remember when it started, Jose, but with Susan, it became much more noticeable during her last week.
I hope the doctors take control soon, your family needs its energy to support Carmen and each other and should not be having to deal with this on your own.
Jxx
My sister didn’t want to lie down, or even to sit down, either. She kept saying that she’d fall asleep if she sat down and she didn’t want to do that.
Thank you for posting the link, Jose. I can see my sister’s symptoms in there, too. You are such an amazing advocate and supporter of your sister; you are doing so much. My heart is with you. Take care of yourself, too.
Julia xx
SENSITIVE!!!!
Dearest Jose
I had a similar (although not the same) experience with my sister, Susan. She was in a very good Hospice but was begging to come home and threatening to book herself into a hotel if they wouldn’t let her come home. She kept crying “but you promised I could come home” and it tore my heart. She would have these distressing episodes in short bursts and then fall asleep again. At the time, I thought I was doing everything wrong and that she thought I was abandoning her, but the doctors said she was a physical danger to herself and others and said they would not permit her to be at home, even with Hospice Nurses, whilst she was so mobile.
I realise now it was not my sister, but the disease. The doctors called it hepatic encephalopathy – this may be the same as raised ammonia levels, but they didn’t use those words to me – as the liver toxins were affecting her brain.
When I called in the Hospice, I didn’t tell my sister I was doing it for her sake. I said I was calling them in for my sake. I said I was so edgy, I needed them to tell me she was okay and that I was overreacting, so that I could stop watching her like a hawk. She was happy with that, as she didn’t want me to be upset and really did want me to stop fussing around her, so she said yes. The Hospice then took over and allowed me to love and support her, without having to supervise and fight her myself.
My dear Jose, I do hope they can get your sister settled, so you can settle too.
Love Julia
Thank you, Pam. We’re going to beat this cancer. It’s messed with the wrong bunch of people and broken too many hearts.
My love to you, Lauren and everyone fighting this disease in whatever capacity.
Julia xx
Thank you, Janet, Darla and my whole CC Family.
I’ve just had 2 calls from the Hospice within 45 minutes of each other. The first was to say “Susan has taken a turn for the worse” and the second to say “Susan has just passed away. She wasn’t in any pain”.
Those of you, my wonderful Family, who know me on Facebook, please do not mention it there yet. I have many people to tell first.
Thank you for everything you have done for me and for my family since the day I bounced off the walls of Susan’s tentative diagnosis onto this amazing site. We’ve been through so much together, you and I. At the moment I am perfectly calm and am just grateful that she is no longer in pain and is finally free of the devastating distress of being unable to communicate, as her cognitive functions deteriorated. The pain will hit me later. For the moment I will simply let her soul soar free, unfettered by the grief of those she’s left behind.
Goodnight, sweet sister.
I love you.
XXXXXXXX
Oh, wow. Thank you for those lovely comments.
Lainy, Susan loves quality food and fine dining. I reckon she’ll have a good time in Teddy’s restaurant.
XXX
Jose, there are very strong similarities between your sister’s behaviour and my sister’s. My sister is very much calmer now. I hope the professionals, whether medical or spiritual (or both) can ease your sister’s distress, too. I know how heart-wrenching it is to watch but not to be able to help.
Julia XX
