Total bowel obstruction and Ovarian Cancer - advice?

[LadyFlumpalot]

Hi all, my Mum is in total bowel obstruction caused by advanced ovarian cancer and has been in a hospice for 3 weeks tomorrow. The last time she ate a proper meal was the beginning of April. Does anyone have any experience of this? Her doctors are being very vague and telling me they can't give a timescale.

She is still in symptom control mode, not end of life care but she is slowing down, getting sleepy, slurring her words and getting a bit confused.

I suppose what I want to know is - can anyone give me even a rough indication of how long? I'm so tired, the hospice is two hours from my house and I'm visiting every day as well as working and doing the childcare. I want to take a couple of days to myself but I'm worried she'll slip away and I won't be with her if I do that

I don’t have any advice but I didn’t want to read and run OP. I’m sorry things are so hard for you just now

They did an emergency stoma when my Mum had total bowel obstruction as a side effect of cancer. It was about 8 weeks after that that she died. The end, when it came, became clear about 48 hours beforehand, so we had time to get everyone together if that makes sense?

I wasn’t there when she died, and I’m sure she waited. I’d popped home because I hadn’t seen the kids for 2 days and they were upset. I tormented myself for weeks until someone told me that I’d been there in the run up and she’d known I was there, so missing the last 10 minutes was nothing to feel bad about. And they were right.

It’s a horrible feeling, I wish I had the words to offer you comfort. But I’m here

Thank you @SoddingUnicorns - that does bring me comfort. I'm sorry for your loss and thank you for your kind words.

Thank you, it was just about this time last year it was all happening so I remember it well. Be kind to yourself too, I know it sounds silly but try to remember to stop sometimes. Eat, sleep, time to just stop and be still for a bit. All these things can get a bit lost in the frantic running around and worry. Whatever happens and when isn’t something we can control or even predict, and that in itself is difficult. And coming to terms with what is to come as well. A good friend of mine likened it to bracing for the impact of a plane crash, a bit pointless and it hurts like hell anyway. Which is blunt, but true.

There is a wonderful poster on here called Mummylin and she runs a thread for posters who have lost a parent, when the time comes you could look it up. It’s a lovely thread, very supportive and gentle. It helped me a lot in those first few weeks.

So sorry to read this Lady - timescales can be so very difficult to judge. It is coming up to a year since my sister died of bowel cancer. She was admitted to a hospice very poorly but after a few weeks of new medication was discharged. She was readmitted and I got the call to get to the hospice immediately (I live over 3 hours away) as they thought she was fading fast. But she held on for another 3 days.

I would say that the hospice staff were utterly lovely (and I hope yours are too)- the care the health care assistants gave to my sister - even though she was effectively unconscious (thats not the right terminology but I don't think I know the correct word!) was lovely. They would come in and freshen her up and brush and style her hair. I wasn't present when she died (I had gone to pick up another relative to bring them back) but I know I had spent time with her, that she was not in pain and that she was loved. Please don't beat yourself up if you're not there at the end. Many people like Unicorns say that they feel their loved one waited until everyone had left - on the night/morning my sister died we put on one of her favourite albums and let it play in the background. I like to think she found that comforting.

and much love

In my experience total bowel obstruction means that either the tumour has metastasised into the bowel (spread) or the original tumour has grown so large it has squashed the bowel. What usually happens is that either they operate to remove it, or they don't depending on how well the person is and what the prognosis is.

If they don't operate it the bowel will eventually perforate (burst open) and once that happens toxins leave and enter the bloodstream and the patient dies from sepsis. This usually takes a couple of days.

Bowel obstructions can be uncomfortable for a few reasons, they can make the patient sick or be in pain but these can both be controlled.

The confusion and sleepiness do show me that she is on her way. The hospice will recognise when she is actively dying and there is usually warning in order that relatives be called-as in, they will know when it is coming.

Doctors are notoriously bad for giving prognoses however hospices don't keep patients in for weeks and weeks and I would say that if she is not going home it is going to be quite soon. I would estimate a week, I could be wrong. My own mother went from this stage to unconscious very quickly. Sometimes the heart and lungs are strong even though the person is gone.

People who are dying emotionally withdraw from the world as part of the dying process which is natural and helps them move on. You taking a day will not cause her upset but will help you immensely. Dying is worse for the people watching on. It is a natural process the body is made for and just as being born takes 9 months, dying also takes time. Being in limbo waiting is horrible, when my mum was dying I almost wished her gone as I couldn't bear any more.

Being in limbo waiting is horrible, when my mum was dying I almost wished her gone as I couldn't bear any more

I remember feeling that way and it was a very odd feeling, conflicting emotions because I didn’t want my mum to die but I also didn’t want her to suffer. It takes a lot to come to terms with it, and OP, take as much time as you need

I should have made clear that it may not be a bowel perforation which ends her life, but the cancer itself. And also that 'active dying' means the breathing changes, there is a distinct change. Breathing becomes deeper and longer goes between breaths. Secretions can make a rattley noise but medication gets rid of this, and these do not hurt the patient. Then a patient will have longer between each breath, or a gap and then a couple of breaths. Eventually one of those laboured breaths is the last, and the patient dies. This is nearly always peaceful in palliative care.
What I am trying to say is that dying is normal as terrifying as it seems, and they will know each stage, and be able to tell you to come, when you need to, even if it means ringing you in the night.

I have no advice specific to bowel obstruction I'm afraid, but just wanted to say that I'm so sorry your Mum is dying and that there is so much pressure on you to juggle everything.

My Dad died of cancer a year and a half ago, and I have young children too. It is tough and I wish you all the best

We did my MIL end of life care at home with us. She died at the end of January. It was very clear when the end was near.

She didn't eat anything for 2 to 3 weeks, didn't drink anything for the last week. It was rough, but we were able to do it the way she wanted to go. She was on a LOT of morphine and other stuff.

I read up on symptoms and how to spot things.

Thinking of you.

@Miladamermalada - she has the latter, the tumours are squashing the bowel. The doctors at the hospital said they could not operate as the section that is damaged is too large and by the time they declared the obstruction she was too weak.

I spoke to her doctor and he said that the cancer is draining her energy and that she can't eat enough to replace it so her death will be like a battery going flat.

I didn't see her yesterday as she had to go back to the hospital as one of her cannula spots got infected and I was weirdly cheerful that I could do a full days work and be home in time to eat with my children. Then I felt awful for feeling cheerful.

I'm so sorry for all of your losses and I'm so grateful for all of your kind words, it's reassuring that the hospice will be able to tell it's coming and will be able to give me warning. Thank you.

When FIL died he went after dh and BIL had both visited and gone home. From what we have read sometimes people go when family who have been there for a long time pop out of the room or go home, as if they are waiting for them not to be there, so don't feel bad if she dies when you aren't there.

Then I felt awful for feeling cheerful

I felt that, for a long time. It’s totally normal and understandable. But also, my mum wanted to live, so very much, and I convinced myself that feeling cheerful was a good thing. It meant that I wasn’t wasting time, because time suddenly becomes so much more prominent in your mind at times like these. We’re not aware of time until it’s limited, if that makes any sense.

Lady not eating is a part of dying, she shouldn't be hungry though sips of water and mouthcare should still be offered. She may also experience something called cachexia-rapid weight loss and muscle loss.
You may feel a big sense of relief once she has gone, be prepared for it as it comes with guilt but it shouldn't. In developing countries where no hospices and palliative care settings exist the dying do so in the home, in the same space as children playing, men working and women giving birth. When my mum died I came out of the hospice and was struck by the fact the world had not stopped. Cars still drove past and people chattered. That is the thing with death, it just happens amongst other normal things in life. You are perfectly allowed to feel happy.
I agree some people want to die alone, others wait until they have seen all their family, and wait until they've all popped out of the room.
People can hear what goes on until the last moment, so talk, and just be as you are around her. You don't need to be quiet or dim the lights, the radio can still be on.
I'm sorry for what you're going through x

OP, I lost my dad in hospital earlier this year. Like you I visited every day (even spent a couple of nights) as hospital was not local.
I was not there when he died. I had come home about 8pm and he went about 11pm. That was one thing I didn't beat myself up about. I had been with him everyday, and that definitely meant more to him.
Please be kind to yourself and get the rest you deserve and I'm so sorry you're going through this x

She's not hungry but is gamely trying to eat. She managed about three spoonfuls of mash and gravy at lunchtime (but demolished a mini tub of ice cream!)

She has a tube from her stomach through her nose to drain the bile and liquid that's gathering. She has a morphine driver and an anti-sickness one.

One of the hardest things I think is that she doesn't look that ill. The little old lady in the bed opposite looks like a light breeze would blow her away... my mum is still quite robust looking (although it's interesting, @Miladamermalada what you said about muscle loss as I noticed her arms have a lot of spare skin). I'm having trouble reconciling that with knowing she will die soon.

If your mum is not being discharged then they are expecting her to die soon. My mum was discharged from a hospice and died at home six weeks later. The last few days she was pretty unconscious so even though I was there when she died, she literally just stopped breathing. It wouldn’t have really mattered if I want there so don’t beat yourself up about that. Be there as much as you can while she’s still conscious and knows you’re there - that’s more important.
The agony of waiting for somebody to die is almost unbearable. I also wanted my mum to die so I could get back to children and end the agonising limbo.
What you feel is natural. But do try to spend as much time as you can with her as once they’re gone the missing them is also extremely painful.
When your mum stops drinking water or being able to drink then she won’t have long left. The hospice will keep her mouth moist and deal with pain relief.
I’m sorry you’re going through this. Cancer is a horribly disease

Lady she sounds a fighter your mum!
The NG tube from her nose is to stop her being sick-it drains into a bag from the stomach, without this the bile would collect in her stomach and she'd be vomiting it up-and it tastes horrible. With a bowel obstruction obviously nothing can go down but the bowel is full, this can cause forceful vomiting of faecal matter but the tube prevents this from happening. It can feel quite cumbersome but is necessary.
The syringe drivers are the best way of getting in medication. Can she press a button to top up or not? Some do let the patient, others don't.
These can take up to 4 drugs, although some drugs don't mix. So say she was to become very anxious or distressed, a relaxant like lorazepam could be added, similarly, if she starts to become chesty, a drug called hyoscine can be added to dry up secretions. Do let them know if she still feels sick or is in pain, as there are different drugs to try, and they can change doses.
As horrible as it is, she is in the best place. Hospices are fabulous places with the best care and much better than any hospital ward. The staff genuinely want to make dying as comfortable as possible, that's why they work there. Are there nice gardens she could be wheeled into? What I regret with my mum is never having the conversations which would have been hard. I didn't want to cry in front of her or upset her. But I never said I loved her or anything, but was only a child so didn't really know what to do. I'd be different now I think.

Yes, there are beautiful gardens, a wildflower meadow, fountains and flowers. She can still walk around a short distance so in the recent good weather she's taken a few perambulations. We had an hour alone today and had a bit of a hard chat. She explained some points about her will and we had a bit of a cry.

It's just all gone to shit. I'm exchanging contacts on my first house next week, she'll never see my first house. My daughter starts school in September, she'll never get her first school photo... and most heartbreaking is that an investment she made decades ago paid off two months ago and she ordered her dream kitchen... it's being fitted next week... she'll never see it.

Lady that's totally shit. All of it. Shite.
Have you talked about the funeral?

Yes, wary of being too specific and outing myself but the songs she has chosen are so... just her. Cheerful and powerful songs that sum her up. She says she doesn't want anyone to be sad and say silly soppy things.

My sister said she wanted 'I'm getting deeper underground' at hers!
Hopefully people will smile when they hear them.
Try to get some rest x

Thank you everyone for your kind words and for taking the time to post. Xx

Lady my thoughts are with you. My dad died in a hospice 10 days ago from a different kind of cancer.

Like you I really wanted to know “how long”. Looking back now, I don’t really know why but I understand how the uncertainty is horrible.

Dad seemed to hang on for longer than we expected. I think the last thing he ate was a twister lolly/ice cream. Possibly on the Monday and he died on the Sunday morning.

Miladamermalada has said a lot of really useful things.

I had hoped to be there when he took his last breath. I thought there would be more of a definitive indication that he was down to his last few hours. But really from the Wednesday it could’ve been any time. I visited every day for hours at a time, just popping home to eat or do a random job. My stepmum was there pretty much 24/7 and slept in one of those big lazy-boy chairs bless her. On the Saturday night I popped back after dinner for a few hours then left at about 10pm. Dad died at 5:30am on the Sunday morning. My stepmum said she heard his breathing change (it had been slow with long gaps of 10-15 seconds every now and again, but it then speeded up) so she sat with him and held his hand and he made a few sigh sounds apparently and then stopped. It was peaceful and just how he would’ve wanted. I thought I would feel awful for not being there at the moment, but as I say, for a good 3-4 days it seemed like it could’ve been any time, so sitting at his bedside for that entire time would not have been practical.

I hope this helps in some way. Best wishes to you and your Mum lady. Stay strong.

I'm so sorry lady

My mum died 2 years ago in the same circumstances. We had 5 weeks between her being seemingly ok (although cancer had already reocurred once), being admitted to hospital with bowel obstruction to eventually passing away.

In the last couple of weeks she got more sleepy and out of it, apart from a few days when she had this sudden burst of energy and lucidity which is apparently very common. However as a pp said often happens, her bowel then perforated and it was at that point the staff told us it was likely to be imminent. She was sedated then but we had another three days with her and she gradually slipped away. As pp have said, although the staff warned us it could be any time they seemed to really know when the time came.

Good that you're having those conversations with her, my mum and dad were very good at getting the rest of us talking and while it was tough it did help, then and now. But as pp said, don't feel bad about days off.
Big hugs and thinking of you xx

I hope they can keep your Mum comfortable.
It helps to know she is pain free.
The hospice will have a good idea of what to expect and when.
My DH died from a brain tumour, he hung on until the kids we’re back at school.
He hung on for two days, I’m sure that was because it was our twin daughters birthdays,he died two days after that.
The breathing pattern changes towards the end.
I was with DH when hr died.
His breathing went from regular, to gaps between which would last until the count of 16.
Then he just stopped breathing, no amount of counting changed that.
Although i knew he was going to die,it was still a huge shock.