My lovely sister

I’ve just sent a reply, Katie – & it bounced back!!! I’ve re-sent via the email link on your profile & hope it reaches you this time.

Enjoy your programme!!

Jx

Every day I come on & want to post an update – but I just feel I’m on a runaway train & I can’t catch my breath – so I go away again & think I’ll try again later.

Thank you for your lovely message, Katieloumatt; it was so lovely to hear from you & I will reply very soon.

The situation so far is good; my sister’s out at last & is staying with me for the time being. Her Macmillan Nurse came to visit on Saturday – she was so lovely … but the fact we had to have a Macmillan Nurse visit at all rammed the whole thing home again.

I read my sister some of your messages & the suggestions I’ve picked up from other threads on the site & she specifically asked me to come on & thank you all for your kindness & good wishes. She says she would find it hard to browse the site herself but is delighted that I’ve found so many friends here & have been receiving such support from you all. She said she loves hearing about you all & is finding the stories you’ve posted about your own fights – for yourselves &/or for your loved ones – with this awful, awful disease truly inspiring.

She’s having good days & bad days but she’s only been out of hospital for a week, after 2.5 months in bed, & the good days are definitely outweighing the bad. Long may they continue to do so .

She heard from her “Ornithologist” today (she was drugged up to the eyeballs when she first met her Oncologist & couldn’t remember what he’s called, so her memory of his title has stuck) & is due to go for a pre-chemo assessment within the next fortnight. Fingers crossed!!!

I feel I may have broken the paralysis by coming on & posting this tonight, so I hope to be back & joining in the fight with you all again very, very soon.

Love to you all.
Julia (& love from Susan, too) xxx

Where would I be without you lovely lot? Thank you, thank you, thank you.

I came on this morning, feeling so, so low after yesterday; I read your posts, meandered around other topics, flitted between boards & now I feel fighting fit again (exhausted, but still fighting).

She’s had such a tough few days. They tried to get the plastic stents out on Friday, but the little b*****s have migrated so that procedure was aborted. Yesterday, they did another EC-thingy & got a plastic stent out & 2 metal ones in – a very tough procedure, I’m told, but they got them well-positioned for optimal drainage. But she was in so much pain!!

She went down at 2.30, up at 5.30 & still wasn’t fully conscious when I left at 8.30. She was vomiting & asking for me. I held her hand & she squeezed my fingers but when I had to move to let the obs be taken she started asking again where I was. She slept when I sat & stroked her hand, then would open an eye to check I hadn’t gone & go back under again.

Having her ask for me like that was the most moving experience I’ve had & meant so much to me, but – $%&*, it’s tough to deal with.

[Then I looked at my stats this morning & discovered I’ve been promoted to Senior Member!! I feel like such a newbie still but reaching the Senior Member stage has really helped me face how far I’ve come in the past few painful weeks.]

Thanks, 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.