Mil Terminal cancer no treatment - what’s next

[Edel12345]

Hi
sorry to be blunt in the title but I’m very practical. My poor MIL has terminal cancer Primary in bowel and secondary in liver and lungs. She is 80 so oncologist recommended no treatement.

we have had very little info and fall between two stools as she isn’t now under going treatment.

she is home with a walking frame as was very wobbly on her feet. In the last week she has started to sleep a lot and has zero appetite. She said she has some pain but nothing too much. She has no energy.

my poor husband doesn’t know if he is coming or going. Thankfully we have no prior experience of cancer but that means we have no idea Whats to come and if we need to start properly preparing our kids. One has some big exams coming up also.

I know every case is different but any information would be greatly appreciated. Are there stages that she will move through ?

thank you
E

Is there a Maggies near you? Call or pop in to chat to them. Lots of practical advice and their knowledge of cancer & help locally will be invaluable. They can be there for you all after her passing too.

No experience with liver cancer, but from other aggressive cancers and mets, deteriorated quickly but the end of life stage dragged out longer than I expected. Seen this four times now. I never realised someone who isn’t eating or drinking can hang on so long, but I found myself on bedside vigil waiting for my relative to pass “imminently” but actually took several days. Be prepared this is emotionally and physically exhausting as the uncertainty means you stay close/maximise time at the bedside not knowing when it will end. I found it gruelling and heart breaking.

My ex fil passed away infarct from terminal cancer, he was given 3 weeks to live over New Year but lasted 10 weeks. He had a hospital bed in the living room & had hospice at home care from our local hospice & the district nurse. Ex sil is a qualified nurse & moved in as he started to deteriorate, she was able to give him drugs & for the last week he had a syringe driver for pain & sickness.

My Mum had secondary breast cancer in the liver, lungs & ovaries. It progressed quickly under 4 weeks from diagnosis to death earlier this year. I looked after Mum at home with support from Macmillan & the district nurse team. She wanted to die at home. It was very hard on me seeing her so ill so quickly, but also comforting to know I helped so she could die in her own bed. Getting help was hard, passed around but once it was set up the team were great. Don’t underestimate how hard this will be on you all.

My friend’s father was in his eighties and didn’t get much in the way of a timeline, just ‘days/weeks/months). He wanted treatment but was not able to access it, due to his age. Was on the waiting list.
He lasted around 18 months, fought hard. Was in considerable pain at the end so I would contact Macmillan about pain relief and ensure it’s all in place.
My father had a syringe driver at the end, our experience was that once it was fitted he was unconscious. Had we been told we would’ve said our goodbyes beforehand. Things can happen quickly, so if anything needs to be said do it soon.

Once the end comes near, I’d consider Hospice care if you have children in the home, irrespective of patient wishes. It’s often not easy (understatement) and I’d question exposing children to this in many cases.

Thank you all again amazing advice

mil doesn’t live with us She is about 40 mins away so I know DH will be over there a lot. He is going to stay tonight to see what she is like.

my mother passed a few years ago (not cancer) but we were extremely lucky she went into a coma and lasted 5 days in hospital but was in no pain and we were got to spend time with her, we didn’t have to worry about her care or pain.

I have another dilemma Work are asking us to travel to US end July / early august for a week. It’s San Francisco area so a good 8 hours time difference. I’m anxious about it … what if she passes in next few months and I’m then not here after to support my Dh and kids who will be grief stricken ? Or what if she is still hanging on but near the end at that time Work are asking for confirmation so I need to tell my manager today and I think day given situation I can’t commit given we have no information ?
Would anyone agree or think I should still
plan to go?

it only hit me reading all your messages that her passing might be very rough I haven’t been processing the fact she is v Ill to be honest as I’m totally in practical planning mode but I’m absolutely devastated for her , my DH and my kids too at the loss they are going to experience :-(

My DM died a year ago from bowel cancer that had spread everywhere, she was 84 and the consultant was fabulous, DM started on chemotherapy, was really looked after.
Copies of letters from the consultant to the GP that my dm received described her as "this lovely lady"
My DM was stage 4 but they still treated her like she was important.
Are you sure your mil hasn't requested no treatment?
It was 5 months from diagnosis to DM passing away, the worst 5 months of both our lives.
I moved in with her, wfh in her spare room, it was a horrendous situation watching and caring for someone with cancer, cleaning up messes, giving anti clotting injections daily (nurse taught me how to do it) but I'd do it again in a heartbeat.
If I were you I'd be led by your mil, what does she want, does she want to be at home?
Whatever she decides it's going to probably be horrendous for you, your DH and mil, so I'd brace myself if I were you.
I wish you all the best ❤️

Get the weeks/months advice from a Dr.
Terminal can mean years in some cases. Its shocking when your expectations are different. You're either unprepared and haven't said goodbye or the long drawn out months are exhausting.

Talk to the family about the trip. They may say go. Decision will be made if they say stay.

Talk to work. If they are understanding and realise that the end could happen in a period just before the trip you'd cancel...then you could go.

I've seen relatives last weeks after stopping eating. 2 months from now you may still be wondering a timeline. However.... Realistically I'd cancel unless the Dr advises its months to a year. Less stress for you

Just to put in that there are more options for places of end of life care, home and hospice have been discussed, for some it has to be hospital which isn't ideal but needed in some cases.

Palliative care can also be given in care/nursing homes, this can be quite similar to hospice care and can be funded through NHS continuing care so it may be something to keep in mind depending on MIL's wishes and what the family can manage. My grandparents both died of cancer with their final couple of weeks in a nursing home - visiting was far more flexible than hospital and the care was amazing, we could be as involved as we wanted to be.

For my mum ( similar age / diagnosis ) it was 11 weeks , however as with most things it's an individual thing , so everyone is on their own path when they die.
I'd also suggest you say the words death , dying etc to your children rather than passing , going away, falling asleep as it is more final and easier to understand.

I'm not talking about cancer but pain relief.

My Mum had Alzheimer's plus a stroke & was unable to tell communicate if she was in pain, wasn't able to move - we had no idea if or how much she was suffering.

The doctors prescribed morphine patches - buprenorphine 5mcg.
At that dose they last 7 days & release morphine every hour ie constant pain relief.

Obviously if your MiL is communicating that she's in pain then they could try them - they come in 5, 10 & 15mcg for the patches changed every 7 days & higher doses that get changed every 3-4 days but again give constant pain relief.

@Edel12345
MacMillan were really good at answering my questions about what was likely to happen and options. I said I wanted to ask the blunt questions and they answered them, it helped that I then knew roughly what would happen.

My darling mother passed away 4 months ago from bowl cancer which had spread all over too. After some innocuous seeming symptoms, which had persisted for roughly a year and coming and going, various tests by the GP, all inconclusive, my sister took her to A&E when she had a bit of a crisis. She never made it home.

Admitted overnight onto a 'regular' geriatric ward with mainly horrendous nursing staff, my sister and I were given quite unspecific information from the doctor. Not once did he mention how severe her symptoms were and what their suspicions were. Apparently, you can't have a CT scan immediately for suspected upper bowel blockage, but you can if you let your patient fall out of bed (twice)just in case their are head injuries. Fortunately mum had four children and we were all there to advocate for her, but she spent about a week here and the lack of care was appalling.

She went from this ward - fully compus mentus - to a women's ward - surgical and scanning I think (it was a blur of waiting in corridors for a space and us passing information to the mainly uninterested staff).

From the corridor where she was waiting for a room on a different ward, she was taken for her colonoscopy; she had a chat with the consultant and after getting the information she would only last another six months, whilst enduring some gruelling treatment, she refused the scan. She was trollied back up to her waiting children where she told us she wanted no treatment, had had a wonderful life, loved us all and wished to die in peace. Which she kind of did as the palliative nurses were much nicer and kinder and kept her pain free for the four days it took her to pass away. We were with her, camped out in her little room for the whole time, doing her personal care, turning her, talking, holding her hand etc. It was traumatic and her hospitalisation was for just over two weeks from start to end.

Just two weeks before that mum and I were shopping and having lunch at the garden centre, so be aware things can deteriorate very, very quickly. She walked into A&E two weeks before, feisty and grumbling and then we lost her.

If the doctors had been truthful with us all from earlier, we would have arranged a hospice, so mum could have been in quiet, respectful surroundings with caring staff. I'm sorry this has turned into a bit of a rant, but the only thing we regret as a family is not getting her into a hospice where she would pass away with dignity and caring.

Sending you love and strength and hugs xx

@BeepBoopBop I'm so sorry for your awful experience. It sounds as if your mum was a really loved and cherished person. She made a wise decision about her end of life and one that I would also choose. People assume we all want to wring out the last days but I want quality not quantity

BeepBoopbop I’m so sorry for your loss.
Thank you for sharing your story.
Given it’s only 4 months it must still be so raw for you still.

what a terrible situation for you all and your dear mother.

my husband got hold of hospice team and they will come out either today or early next week to do an assessment. Hopefully we will know a litttle more from that.

Again thank you to everyone who has shared their experiences It really helps me get an idea of what is to come and what to think about. Thank you again

I lost my 77 year old DM at the end of March to exactly the same cancer as your poor MIL. She had been having treatment for about a year until the end of August 2022 when it stopped working. Her consultant gave her 6 months and he was pretty much spot on.
Up until a month before she died, although she had been slowing down slightly, she still was able to get out and about, but then things started to deteriorate. She had a couple of admissions to hospital with unexplained infections, her appetite decreased and she started to sleep during the day.

When she was discharged from the care of her consultant last year we were put in touch with our local hospice. She was also very fortunate to have a fantastic doctor, who along with a wonderful team of district nurses and carers helped us carry out her wish to die at home.
A hospital bed was set up in the living room and for the last five days of her life, either her husband, my sister or myself were by her side. The carers came in four times a day to wash her etc and the district nurses came in and adjusted her medication as and when it was needed.

She passed very peacefully with the three of us in the room, although i am very well aware that we were all very fortunate to have had it that way.

My DC's are 16 and 17 and both wanted to know exactly what was happening all the way through DM's illness. They were very, very close to her and her passing has hit them very hard indeed, but they both managed to speak at her funeral on Monday, which is something that i couldn't do in a million years.

One thing though, don't be afraid to push/shout/scream for more help if you feel that your MIL's needs aren't being met.

I will be keeping you all in my thoughts x

Hello OP, I am so sorry to read your news, like you I am very practical and over recent years have been through this with both my mother and sister, so here is my distilled knowledge.

1. Set up a WhatsApp group for family and friends, then you only have to say it once and people will not bother you.
2. Speak to her doctors and ask the question, normally they will say nothing but if you ask a direct question, they will give you a direct answer especially with regard to potential timeframes.
3. Your MiL might not want to discuss arrangements, but if she does, so much the better.
4. This is the rough one, delegate a family member to ring around to funeral directors and start to compile a price list... I had to do it for my mother, awful at the time but really took the pressure off when we needed to do it for real.
5. Use your MacMillan nurses, especially for pain control, do not use the out of hours GP as they will be limited on prescribing pain relief, thanks to Dr Shipman, MacMillan nurses are not and can prescribe morphine.
6. Ask them to show you how to change a bed when your mil is still in it.
7. My mother had liver cancer, you will find that her appetite will diminish quite quickly, so little meals as often as she can tolerate them, and be prepared to do chips at 8:45am or toasted hotcross buns at midnight. Make sure you have some biggish nighties as she will probably get ascites - fluid retention in her tummy, it is uncomfortable. She will get tired quite quickly so when this starts to happen ration visits to 15 mins and let her rest after... it is tough but it does become necessary.
8. Slightly odd one, get out the old photo albums and go through them so that you have the names on the back... she will enjoy it and you will not be left with albums full of strangers
9. Make sure that you rest, this is a long haul.

If you can all keep talking, pls do, this will happen fast and furious some days and then just pour slower than molasses on others.

If you need someone to talk to, pls reach out... you are in my thoughts.

Hi
i just wanted to come back as things have progressed .

MIL rang this morning to say she was in terrible pain all night. Worst pain she has ever experienced. She is not one to complain ever. We were able to get hold of pAllative care nurse through gp who came over and gave her morphine injection and anti sickness medication. She said we are talking weeks rather than months and that cancer had spread pretty much every where inc heart :-(

they will come back tomorrow and said they would assess her over next few days.

I feel physically ill now thinking what is going to happen and the pain we are all going to experience on loosing her. It’s just too son. How do I prepare myself to be ready and there to support my husband and kids. And I mean that not in a ‘poor me way’ more in a what can I put in place now or start to
think about to ease the burden on them when the time comes?
Mil has said she does not want to
go into palliative care but DH works full time so he won’t be able to stay with her 24-7 and no one else really to help.

I will tell my manager tomorrow. I work in a demanding role but he is very empathetic. He has no experience of cancer and his wife is a stay at home mum so has none of the juggling experience so won’t understand that side but I want to ensure he is aware etc

thank you
🙁

Sending you strength. There's nothing really that will prepair you all. Sleep as much as you can. Batch cook some nutritional freezer foods. Get in any favorite snacks or easy to prepair foods so you can forget about cooking or forcing yourself to eat. Tell the kids the things have got a bit worse. Prepare them as appropriately as you can. You could just say she is feeling tierd and poorly now as anything that prepairs them will help. You don't need to say anything about pain. Just say she feels poorly. Then once she goes, they might find it comforts to say she isn't feeling poorly and tired now. I hated telling my kids. Saying nanny had died, son asking she will ever come back and me saying no she can never come back killed me.

@Edel12345 I am so sorry you and your family are going through this. I’m going to build on @LatteLady pragmatic list.

• Find out what type of funeral your MIL wants, my Dad wrote his own funeral with the readings and music he wanted and chose the photos for the order of service. It made it so much easier for us and meant the funeral was a real reflection of his whole life.
• Make sure you have a contact list of all the friends and family your MIL will want told.
• Take photos and videos on the good days. Even though we knew my Dad had weeks we only took one photo on his birthday and none at Christmas. I regret that. I did record him giving a speech at his last family event which I treasure as he was on good form.
• Go through her finances so you know all the institutions and account numbers e.g. banks, shares, investments, providers for gas, electric water etc. Much easier to ask questions now that having to play detective.
• Maybe bizzare but we got a couple of fold up chairs which we stored in the wardrobe. We could quickly whip them out so we or visitors could sit by my Dad when he was bed bound.
• Be proactive about asking for equipment, NHS/MacMillan can provide all sorts of equipment very quickly.

My mum is a similar age and has bile duct (liver cancer). It has been a real up and down journey to this point. Bile duct cancer has a prognosis of a few months as it is so aggressive.

It was picked up beginning of 22 and mum has many other health conditions so we thought it would be rapid but she is still here!

I am an only
child and it has been really stressful - started out with hope it could be operated
in but they twice refused the op as she was in such bad shape and thought she wouldn't survive the op. Then a short attempt at Chemo that lasted less than a week as she got an infection and had to be hospitalised. She was delirious and confused.

She has had all sorts of issues with pain meds making her confused/unable to stay awake/incontinent. I've thought this is the end a few times and then she has rallied. Hospital treatment has been incoherent and social services were so busy I was told they couldn't assess her care needs for 3 - 4 months as she became unable to care for herself. Luckily hospice stepped in and fast tracked
that and she now has careers going in three times a week to clean and care for her topped up by me shipping for her, collecting prescriptions etc. She is now on manageable pain meds so able to make herself food, get to the loo etc.

It's tough.

Ah I also have two sons who have been close to her but particularly my son with ASD.

He has a massive bond with her as he doesn't have any friends and has hung out at hers every week, had sleepovers, stayed with her when we went away and he couldn't come etc. I am trying to prepare him but I'm not sure how we will cope when she goes.

You will have access to McMillan and Marie Curie both support the patient and family in different ways. Ask about preparing children....McMillan have information leaflets. Your hospice normally offers support and is not just a place to die but gives lots of support to you all. The pain side is a balance between being aware and communicating or pain free options that should be under palliative care

Sorry about your MIL. I suggest contacting social services for advice about carers visiting if she wants
To stay at home. I think she would be on something called End of Life pathway so it would be free.