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Can I have some urgent palliative care advice / suggestions / guidance please

(22 Posts)
Eve Tue 19-Jul-16 23:40:35

My mum is 74 and in the last few weeks has gone from feeling unwell and blaming painkillers to advanced / aggressive ovarian cancer with an outlook of a few weeks.

She is still very aware , very strong (farmers wife all her life) and not acknowledging , accepting the doctors saying no point to chemo or to fo surgery to remove a blocked bowel. She thinks they are just giving up on her and not making an effort.

To be fair she has been waiting 2 years for a hip replacement and shunted round the nhs from department to department in that time whilst in a lot of pain, which probably masked the ovarian symptoms.

Can I insist on her behalf they try as she is gutted they are not trying when she wants them to.

fusspot66 Tue 19-Jul-16 23:47:50

I'm sorry Eve and your Mum.
I would be pushing for a 2nd opinion re the blocked bowel at least
I've known a very frail terminal 93 y o have surgery on similar.

Eve Wed 20-Jul-16 07:48:14

Thanks useful fusspot, my mum is tired more than weak, so if she had surgery she could at least eat a bit which she can't do at the minute.

Stuffofawesome Wed 20-Jul-16 07:54:50

Is it the oncologists saying this? Has she seen a palliative care consultant? Blocked bowel is a serious issue and they should be doing something even if surgery inappropriate. If you have a hospice nearby get a referral as they are brilliant in this sort of situation with advice support and advocacy. Also very good at pain management.

LIZS Wed 20-Jul-16 08:05:40

Agree, a blocked bowel could suddenly become a medical emergency let alone the pain and effect it can have on eating and general wellbeing. So would definitely be pressing for treatment. It is a lottery though, dm had bowel cancer in her late 70s and has had fantastic treatment twice.

desperatelyseekingcaffeine Wed 20-Jul-16 08:10:54

Ask for more details. Generally speaking if the bowel is blocked at a single point then surgery can help. Often with ovarian cancer the abdominal lining over the bowels becomes essentially matted and blocks the bowels at multiple points. In this case surgery wouldn't help.

Sometimes it resolves itself with rest (ie no food) Medications can be given such as steroids and antisickness sometimes adrug called octreotide can help. If she is vomiting a tube in her nose to relieve pressure in the stomach will make her feel better.

For some in her situation chemo is given as it may help to shrink the blockage. However that is for the oncologist to decide by assessing her. If she's very keen to try she should ask them about it. It may just make her even worse though.

I agree palliative care should be involved too.

Hope this helps it's a horrible situation for you all

Wolpertinger Wed 20-Jul-16 08:23:43

Hi - I am a palliative care consultant, happy to PM you and give you my details to confirm that I am who I say I am.

In ovarian cancer the cancer has usually spread all around the lining of the bowel causing the blockage rather than simply blocking the bowel in one place. This makes surgery impossible sadly - it's hard to explain in text and I usually explain it with a drawing of the bowel.

Your mum wouldn't be able to insist on surgery if the surgeons and oncologists all agree that it wouldn't give her the benefits she is hoping for.

As Desperatelyseeking says, sometimes a drug called octreotide can stop you being sick as often although nothing in this situation will stop you being sick completely. It is normal in advanced cancer not to want to eat very much at all and changes can take place very very quickly - especially in farmers and farmer's wives (I work in a rural area) who are very stoical and will put up with an awful lot until the cancer is completely overwhelming so often things happen very quickly for them.

I would hope that you mum is being seen by palliative care but if she isn't make sure she is ASAP.

Best wishes flowers

Hufflepuffin Wed 20-Jul-16 08:32:48

i can't speak to your main question, but when my mum's bowel was constricted last year, she felt much, much better if she stuck to a low fibre diet. The Nhs in our area was a bit shit at the dietitian side of things so it was something we did after research online but the Macmillan nurses were amazed at the difference it made to her pain levels and quality of life. www.bccancer.bc.ca/nutrition-site/Documents/Patient%20Education/LowFibreFoodChoicesPartialBowelObstruction.pdf

Eve Thu 21-Jul-16 08:47:26

thanks all , he surgeons have told her firmly that surgery is not an option and there is nothing they can do.

She is having a lot of difficulty taking this on board and has gone from being hopeful of chemo / surgery to wanting it all over.

Its awful to deal with. No other support has been offered.

Hufflepuffin Thu 21-Jul-16 10:12:07

I'm so sorry. My mum's cancer journey was much longer, but the transfer of care from the oncologist/surgeon/hospital team to the palliative/hospice/district nurse team is terrible. Once you are in the palliative care "system" you will feel much more supported.

Have they referred you to a local hospice? My mum was very resistant to the idea at first because I think she thought she'd have to leave home, but they were great and she was cared for at home through the hospice. The district nurses were the true heroes though, and were visiting twice a day by the end.

If you aren't being offered any support, speak to your mum's gp and ask what happens in your area.

Wolpertinger Thu 21-Jul-16 12:48:43

You need to ask to see the hospital palliative care team. There are 'things that can be done' if not by the surgeons. It is absolutely vital that she is under their care.

CharleyDavidson Thu 21-Jul-16 12:56:50

You can find lots of info on mine about malignant bowel obstruction. Dad had bladder cancer, and it was the obstruction that meant his time was very short suddenly after battling lots of other symptoms to that point. He became unwell quite quickly, struggled to communicate and within days was sleeping most of the time. He was given meds to calm the collicky pain you have when your bowel is trying to work but can't and morphine for the pain in general. We were told he had hours or days leftv when they knew his bowel was completely blocked and 7 days later he had passed.

Other treatments (nasal tubes to release pressure of fluids etc) are of limited effectiveness sometimes and you need to weigh up their risk against whatever re,if they provide.

Eve Sun 21-Aug-16 08:00:15

Unfortunately my mum passed away this week, we are all slightly in shock at how quickly this has happened.

We were able to get her home as she choose that over a hospice and we have had the most fantastic care team in place which we are extremely grateful for.

JontyDoggle37 Sun 21-Aug-16 08:02:54

So sorry to hear this flowers but glad you were able to get some good support in place in the end

TheWitchwithNoName Sun 21-Aug-16 08:04:14

Sorry for your loss Eve flowers

catbrushblanket Sun 21-Aug-16 08:08:39

Sorry for your loss x

Simmi1 Sun 21-Aug-16 09:38:04

So sorry Eve flowers

Gatekeeper Sun 21-Aug-16 09:43:07

Oh Eve...I am so sorry. Here's to you and your dear mum flowers

angeldiver Sun 21-Aug-16 09:50:46

So sorry you didn't have longer with her Eve flowers

Rainbowqueeen Sun 21-Aug-16 09:54:12

Sorry to hear this Eve flowers

123therearenomoreusernames Sun 21-Aug-16 09:59:45

So sorry for your loss.

NK346f2849X127d8bca260 Sun 21-Aug-16 18:17:53

So sorry for your loss, pleased her end of life care for her and you was how it should be.
Take careflowers

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