Mum in hospital again

mum passed away

2010-10-23T09:24:53Z

The night before she was due to go into the local hospice, mum passed away at home ( early hours of 22/10/10). She had her pain controlled much better at the end with a patch and was comfortable.

I'd like to thank the forum and everyone (esp Sarsfield) for their support at what has been a difficult time. I'm still in shock and mostly relieved that her suffering is over. I expect it will sink in over the coming days. The sharing of experiences on here has been useful on the dreadful rollercoater we find ourselves on and really helped me gauge what might happen in the future. Her time was short and I miss her dreadfully, miss her being well at any rate. She was a lovely feisty woman who carried on smiling to the end.

My thoughts are with you all who are still battling and I wish you all the very very best of luck with your personal journeys. My sole advice is to get a mac nurse immediately; we waited too long and had we pushed it mum could have had better care for longer, but in the end her deterioration happened very quickly.

with much love

Anne xxxxxx

tough weekend for mum

2010-10-18T17:54:39Z

I don't want to bum anyone out but my mum's had a bit of a tough weekend. I haven't thought that the tramadol was doing it's job for a few weeks and that mum needed something stronger (she was at 400mg per day plus 50mg for breakthrough). I've lost track of how many times I've said to her she looks uncomfortable but she wasn't having it. She was offered morphine weeks ago and has refused it. But this weekend she had terrible pain on Sat am and refused to allow the Dr to be called! It happened again on Sun am but this time he came out and prescribed morphine. He didn't prescribe a high enough dose though and so it happened again early this am, and the Dr came out again to up it. Now she seems to have enough. Her friend is with her (has been with her for days) - I would have called the Dr on Sat am, I wouldn't have cared if she was refusing! It's frustrating and annoying but what can you do?

But I'm so relieved that she's now on it and the pain should be lessening and under control (she's exhausted). We have the onc appointment tomorrow (first one since she was diagnosed on 28th August!). I just wish she'd organised the morphine to have it ready when she needed it rather than go through two on call doctors and the lack of proper dosage. But you can't take people's power away, it was her choice. I really hope that she can now have a good time and get mobile again with a bit more energy. She finally sees her Macmillan nurse on Weds. I don't know why these things happen always, without fail, at a weekend when it's just impossible to get any continuity of care. Anyway, am delighted that given a few days with the right amount of painkillers and rest that she should feel more comfortable than she has done in ages. And once we get the Macmillan nurse it should, everyone tells me, be much simpler.

I got home today and my kids are on school hols - one taken themselves off for a sleepover and t'other one's at a pal's. So am here in a quiet house with just the animals (2 cats and a dog) chilling in peace. Blissssssssssssss xxx

don't know if I'm doing this right!

2010-10-11T07:22:59Z

Hi all

My mum was diagnosed with secondary liver cancer in August with a primary in the duodenum or pancreas. She'd been hospitalised with acute pain in her right side and put on tramadol. She was sent home ok-ish to await appointments with the general surgeon and oncologist. We saw the surgeon who said her cancer was inoperable and chemotherapy pretty pointless on 20th Sep, and while waiting for the oncology appt she was hospitalised again on Friday 1st Oct. She's still in.

She has two deep vein thromboses in her right leg (calf and thigh) and they've started her on warfarin. The trouble is she has a form of vasculitis (a blood disorder- autoimmune) and they have to keep an eye on her blood levels to not make it too thin. This means I suppose that she's not likely to pass from a clot immediately which is good. I was pushing for a blood tranfusion as her haemoglobin was low (8) - she had that on saturday which I thought would perk up up a bit as she was feeling very tired, but it doesn't seem to have done much. Her stomach is swelling up which is probably due to the liver. It's awful because I can't see these clots being resolved - it was such a shock that happened and we weren't expecting it. I suppose that's due to the cancer. But we still have to wait to the 19th Oct to see the oncologist, everything seems to be taking ages. I realise that she's been caught late with the cancer, and her health problems don't give her a strong body to tackle this from.

I want to feel positive about it and we are still having a giggle about the things we can. It's just terribly sad. Has anyone else had experiences of this? I can see that she may not have long at all now, it's just tough as I suspect it's weeks rather than months but the lack of oncology appt means that we're still in the dark. There are people I think should know how sick she is (some of her friends) but she doesn't want to talk to them. I can understand that. I'm the only family support nearby (my sister and brother are away, in one case overseas) and I worry about burdening them with things. She has a male friend but he's finding it difficult to cope and is slipping into denial as much as he can. We now have a palliative care team and macmillan nurses involved which is such a relief. It's just really worrying on so many levels I don't know what the best thing to do is. Any comments would be very gratefully received :)