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

2 minute read time.

FormerMember

11 Oct 2010

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 :)

FormerMember over 14 years ago

hi anne

I am so sorry for your mums diagnosis. It sounds so familiar it is really very scary. My husband had had pain for months and awaited an ultrasound when it eventually happened he was in just the same situation as you mum, including blood clots but in his case they had caused pulmonary emboli, clots in the lungs. It is of course up to your mum who she tells and it is very very hard to tell people the news but in my opinion tell as many people as possible and you may find extra support you weren't expecting.

They do say chemo is unlikely to help, tere was no time for it to work in my husbands case because he has a complication which caused him to die even quicker. I hope your brother and sister know the news, because you should spend as much time as possible together.

the next 8 days till the onc appointment will seem very long but it is that, 8 days. If she is still in hospital can they not get an oncologist to visit the ward she is on? they will still want her to go to the outpatients but at least you may have some of your questions answered. Have they talked about a biopsy if they are not sure about the primary? not sure how old your mum is. but it might guide any possiblity of paliative chemo.

T
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FormerMember over 14 years ago

Hi Annie,

I agreee with T you want to inform all the members of your Family and Friends You and your Mum will need all the support you can these comimg weeks.

Here on this site you will get all the Love,caring and Understanding that you want if you need it. We are here to help in any way we can. In Macland we are one Family for all.

Take care and be safe Big Hugs Love Sarsfield.xx
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FormerMember over 14 years ago

Dear Temple and Sarsfield

Thanks so much for your postings and kind thoughts. My mum was discharged on monday but has to go for blood checks twice this week (today and friday) and has asked me to go along today. I'll see how she is. She's terribly, fiercely independent and that's wonderful but I know she's keeping some things from me.

Temple - yes, you're so right. She's 71 and 8 days (6 now) seem forever. Also diagnosed through ultrasound after pain in the abdomen. They did a biopsy on her liver but still seem unsure if it's pancreatic or duodenum (but basically there are tumours all round there). My sister is about 150 miles away and while she came up last week she can't cope with it really. I worry that something dramatic will happen rather than the slow painful deterioration some people have. My sister was saying that maybe mum will go and see her the end of November as she wants to, but that seems far too far away to plan now. Like I said, I sort of feel I'm the only one looking at my mum thinking it's probably not going to be long and feeling a bit guilty that I can't see the hope (or denial) that other people see. I just have to take things day to day.

It must have been a dreadful shock for you T, I'm so sorry you have lost someone so close. My Dad lost his wife to bladder cancer 5 years ago, she was only ill a year.

I'm a single parent too, just started a new job with people I know fortunately who are wonderful. I can take what time I need with no issues. Of course I still feel a bit rubbish but I think they'll give me some more slack yet.

Many many many thanks. I wasn't sure this posting had worked and only checked this morning. It's so lovely of you both to take the time to respond xx
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