lalupes
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Lainy – a friend of my sister’s phoned her to say she & her boyfriend wanted to visit her in hospital but her boyfriend was ill with diagnosed swine flu, so she was going to tuck him up in bed & come on her own. Sis had to yell “NO!!! He may not be coming with you, but you’re still in the potentially infectious stage … DO-NOT-BRING-THIS-INTO-THE-HOSPITAL …”
I think her friend was offended but the ward is still flu-free.
GOOD LUCK TO YOU, LAINY.
Jxx
Welcome, Jacque – this waiting & not knowing … & waiting some more is truly awful, isn’t it. I am so with you there!! My sister was due to have her plastic stents out & metal stents inserted today but she’s just texted me – they did the procedure this morning … but they can’t find the plastic stents!!
My thoughts are with you & your mum.
All the very best
JuliaThanks, Viola!! I’ll look into that.
Louise – you may well be right, there. My sister hasn’t been here for a while but maybe Laura can smell illness on me when I come through the door after visiting the hospital. That could certainly explain her recent obsession with that corner of the room.
It was bucketing down here (the rain, that is in case that’s a particularly English expression) & horribly overcast the day of my sister’s aborted op, but yesterday was a bit brighter & a bit warmer. Today the skies look much clearer & the day outside my windows looks really welcoming. That may well be due to the improvement in my state of mind but it’s comforting, nonetheless.
The oncologist told her yesterday (in response to her question) that, yes, this disease will shorten her life. She said she didn’t want to know numbers; he said good – ‘cos they don’t know numbers. I don’t want to know numbers either; I just know that she’s full of life now & from now on I’m really going to try to live one day at a time.
I’m glad they’re going to tweak your steroid dosage & I hope it helps a lot.
If “visualisations” help, remember that, as Zorro, you’ll get to fence with Catherine Zeta Jones!!
Thank you, Lainy – it took me a while to absorb them but I think they’ll help. I don’t want to overwhelm her, so I’ll just listen – if I can; if I can’t, I hope she’ll understand I’m hurting, too.
Katie – I’m so, so sorry. In many ways I’m glad they didn’t open my sister up, although I wish circumstances had been such that they COULD have done the op. My recurring nightmare (well, “daymare” really) was exactly as you’ve described happened to your Dad. It’s so awful to hear my nightmare described in such real terms. It makes me glad her surgeon “didn’t want to be a hero”, as the Specialist Nurse described it to me when I did get to speak to her.
Thank you for telling me about your Dad & my heart goes out to you & your family, too.
Val, I see you’ve seen my blog about Laura!!
Yes, she’s out of the wardrobe now. She’s a rescue cat & has only been with me 6 months so I think she’s still ultra-sensitive to change. Mum says she patrols the house ferociously & is clearly trying to protect me from intruders (whether from the catflap or the gap in the skirting-board near the front door, which she sits & glares at regularly). Every so often, she gets overwhelmed, too, & it’s back to the wardrobe to regroup!! Welcome Zach!! I love your goals – brilliant!! Please will you upload the photos of both weddings afterwards?
I’ve been going through a particularly emotionally-bleak phase for a day or two but your goals reminded me that good things will still happen & I need to get back on my horse (metaphorically speaking – I’ve never been on a horse in my life & have no particular desire to start now!!
)I can see the slash of the burning “Z” before my eyes as I type.
Julia
I’m so glad I’m feeling feisty enough again to come onto other people’s threads, rather than just my own – now I know what Jolene meant about giving the beast a NAME.
Kris, you are so, so inspiring!! I send loads & loads of good wishes & positive thinking winging your way.
I gave my sister a stuffed-toy dog during her 1st week in hospital. He’s a German Shepherd & she’s named him Billy D. Rubin. (She called him Deefer Dog, originally, but since all the drains have gone in, the D has moved to become his middle name).
Dear all
I was crying when I posted yesterday & today, reading all your wonderful messages, I nearly started again! You are all the absolute BEST. Thank you.
I now feel we’re into a new phase. I had thought that a new phase would start post-surgery & today, even though the planned surgery didn’t take place, I feel we are “post-surgery” & that the new phase has started.
I spoke to my sis this morning & she said they took nodes from two separate sites on the liver & both tested positive for cancer. Now I know, at last, what we’re dealing with, I – oddly, perhaps? – don’t feel so helpless & in the dark any more.
So the BEAST has now been NAMED (thank you, Kris & Jolene – maybe it’s not so odd that I feel less helpless today, as I have something concrete to fight now).
Viola – thank you so much for posting; particularly as you say you don’t often post. I’m grateful that you were so touched by my plea that you wanted to reply. I presume they can’t take the tumours out, if 2 out of 2 tests proved positive – as they won’t know how many others are in there. We’ll see, though. My sister won’t give up & neither will I.
I’m in a dilemma, though, as it’s HER cancer, not mine (not that I wan’t it!! Absolutely not!!) & I feel I ought to pull back to let her deal with this in her own way & in her own time. I don’t want to suffocate her with my worries, too, but I don’t want to pull away from her. Do any of you others feel like this?
Today, I’m not sure if I’m fighting for her or for myself. I suppose I’m still in shock.
Not sure what I mean, now – I can feel I’m starting to ramble.
Thanks again & love to you all.
JxxThank you all so much for being with me. The Specialist Nurse had promised she would call us; she promised she’d be there for us; all we had to do was call. We called 3 times during the day for news but no one called back. She called me back at 7.15 this evening – but by that time we’d got through to the ward & had been told by one of the nurses there that my sister had been back on the ward since early afternoon. She wasn’t supposed to be going back to the ward this afternoon; it’s an 8/9 hour operation & she was then due to go to ICU. So the nurse told us they’d done a laparoscopy before attempting the hepatectomy & discovered another tumour in her liver. So they won’t be operating after all.
I always knew this was a possibility but what a way to find out. I feel so betrayed. I feel completely let down by the hospital & the Specialist Nurse.
I’ll pull through this tomorrow but I feel absolutely awful now.
I know this isn’t the end; so many of you wonderful people have already shown me that, but I feel horribly bleak at the moment.
Thank you for being there to help me let of steam like this.
Julia xx
Thank you, all!! I got a call from her at 8.30 saying “They’re coming for me in half an hour”. Mum & I both wanted to be at the hospital today but they’ve all STRONGLY dissuaded us – so I’m going round to mum’s & we’ll alternate our calls to the Specialist Nurse.
Wendy, I’m so glad your mum feels well enough to go on holiday. I can’t believe how quickly I’ve had to learn what a nasty disease this is. Telling it to get lost & then refusing to let it spoil your life sounds a healthy approach to me!! I send every good wish to her & hope she has a very relaxing holiday.
Jx
Thank you!! Yes, I’m definitely on tenterhooks at the moment. I got a call from her at 8.30 saying “They’re coming for me in half an hour”. Mum & I both wanted to be at the hospital today but they’ve all STRONGLY dissuaded us – so I’m going round to mum’s & we’ll alternate our calls to the Specialist Nurse.
They’ve told us 8 hours & then ITU so at least we’ve been warned.
Jx
I’d like to thank you for the recipe, too, Louise. My sister alternates between constipation & the other (which I have NEVER been able to spell!!) & I’d like to make some for her, too. She doesn’t have much of a sweet tooth, but cocoa & peanut butter shouldn’t be too sweet, if I cut back on the sugar.
Thanks, Julia
You are brilliant!! I love your style & your sense of humour. I don’t think anyone’s told her anything yet but I’m going in to see her tomorrow & I’ll sit there until I get someone to give me the info we all need. I had a knee replacement last year (far too young – we obviously deteriorate early in our family
) & they got me out of bed & walking within 24 hours, so it doesn’t surprise me that they don’t take having 70% of your liver removed as an excuse for a lazy lie in!!Goodnight, all & I hope we all have sweet dreams.
Jx
Oh Val, thank you so much for all the information you’ve given us. I recognised so much of what you described as being what Sue’s experiencing. She’s had a drain from one side & now has a drain from the other. They went in from the front for the 1st one (it certainly looks like it’s between the ribs) & the 2nd one went in from the side. She said there was a wiggly-wire-thingy which goes here, there, round the houses, through the liver & into the bit which needs draining. She looks much less yellow now.
I laughed when you mentioned the Tsunami effect on the family – that’s how mum described it, too. Please don’t hold back on the colourful language – it’s EXACTLY what I need!!
Thank you for the warning about the likely time-lag between op & final diagnosis; I would certainly have gone mad with frustration if I hadn’t been pre-warned.
I second LuLu’s on Probiotics. Sue was prescribed those in St. Thomas’ & now she gets family & friends to bring in the probiotic yoghurt drinks every day or so. She said she really can feel the difference.
I send all my very best wishes for your continued progress.
Julia x
