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

Sorry to hear this.

i would ask the hospital team or her GP to make a referral to your local palliative care team. They are the experts in situations like this.

You all also need to have open and honest discussions about what her wishes are. Does she wish to be looked after at home, in hospital or in a hospice? Is she happy with her will etc? Any wishes for her funeral. It’s taking ages at the moment but if nobody has power of attorney for your MIL (for both health and welfare and finances) then I would get that sorted as a matter of urgency.

Thank you so much for your reply.

had never thought about asking her wishes - this is why I posted to get practical information so thank you.

it’s just so difficult and upsetting to process that thinking straight is hard.

our kids are absolutely besotted with their granny and I worry for them too.

I don't mean this harshly, but at 80 years old and what sounds like quite progressed cancer I would think it would be wise to start preparing your children, yes.

A friend of mine cared for her mother at home in her last days and said that she was totally unprepared for how hard that was; she told me that she would advise anyone to seek hospice care. She said that no matter how much they wanted to die at home, she would try to convince them to change their mind.

I'm sorry - this is very hard for you all.

Power of attorney was taking 5 or 6 months to get earlier this year so you might need to do that very fast indeed. In the shorter term suggest you and DP find out what she wants and needs and if possible the prognosis. With my folks I got them to write a letter to the GP saying they agree that it's ok for info to be given to my sister and me and for us to speak to medical staff. That's useful if your lovely MiL is having a bad day and needs someone to advocate for her. Also help her find out about palliative care under nhs and a local hospice and what help there would be to help her stay at home for as long as possible if that's what she wants. Hugs.

I think you should try and get a referral to a hospice. Some of them run day hospices or will send a nurse from the hospice on home visits as well or instead of offering residential care. And can help both the patient and their family through this difficult time.

Find out where she wants to die and do your best to fulfil those wishes. Ask her about the kind of funeral she wants.
Ask for palliative care team help. We nursed my parent at home and they were in a hospice for a while. The hospice were wonderful but I’m glad we brought them home to die as that’s what they wanted. We had a district nurse team who came and administered morphine via a syringe driver to give continuous pain relief. They also washed them etc
it’s very hard watching somebody die and they stop eating and drinking after a while, sleeping a lot. This is hard wherever they are. Just make sure you have support

No not harsh at all Slipperypenguin I should say we told the kids a few weeks ago that granny had terminal cancer and wouldn’t get better but we didn’t go into timelines. Now I guess it could be days or weeks or months? I just have no clue but I’m hesitant as one of the children has big exams … Im between two minds as if we tell her now that granny won’t be with us much longer she will totally go into a spin …

I guess I don’t know either how long so hoping months rather than weeks but we have no idea …

If the cancer has spread to the liver be prepared for things to happen fast. You definitely need to find out your MiL wishes & to start preparing the DC. If they are still in school then speak to head of year as they can help for special circs (& tutor if in Uni).

Get in touch with Macmillan, Marie Curie or Tenovus as they can help (& also because how much help is available from them / how effective it is seems to differ from charity to charity and location)

Hope your MiL isn't in too much pain and that you, your DH and DC get through this.

Some areas and drs surgeries will offer hospice at home care which will help with palliative care, pain relief etc which means she can stay at home,. If there is the space then a borrowed hospital bed and other appliances like commodes etc can make home care easier.

If she is not already getting attendance allowance then an application can be fast tracked for someone with a terminal diagnosis. It can be expensive to care for a terminally ill person, additional heating and laundry expenses, appointments etc so check on the Gov.Uk websites and ask to find out what financial support is available.

As she comes closer to the end of her life you might want to consider hospice care, don’t be frightened of it, they are very comforting places and for some families they are the support they need. See if you can visit a local hospice and see what they have to offer, they are very supportive not only to the patient but to the family.

Most of all take care of each other , tell your children that granny is very poorly, and if they ask what will happen be honest, explain in a way they will understand about how our bodies sometimes just get worn out and that doctors don’t have strong enough medicines to fix the, (don’t mention going to sleep!) Discuss it at their pace but don’t keep mentioning it. Children often take time to absorb things, and will often come back to ask the same questions time and time again . If you are sad and cry don’t try to hide it from them, seeing someone else dealing with sadness will help them to do so as well.

I really really appreciate everyone who has taken the time to reply. Thank you.

if we get hold of a palliative care team can they give any idea of timelines? I imagine there are stages with terminal aggressive cancer? Just again thinking practically with summer holidays booked etc

So sorry to read this. We’re in a similar position although not quite as advanced and I have found MacMillan to be incredibly helpful. You can speak to a nurse practitioner who was able to explain things to me and advise on the right questions to ask and care available.
Wishing you all lots of strength to cope, look after yourself too.

To help support your DC it is worth speaking with Winston's Wish. They are experts in supporting children with bereavement.

And sorry you're all going through this.

I’m so sorry. My beloved dad was diagnosed with mesothelioma back in summer 2021. He was 92. Because of his age and the type of cancer there was obviously no treatment. He managed to hang on with us for a year, and during that time we tried to carry on pretty much as normally as possible, so I would take him and my mum out twice a week for coffee and DH and DCs would come when they could. As he got weaker I’d take my dad out in a wheelchair. He loved to be out in the fresh air and having a chat.
He was obviously tired a lot and would rest and sleep for most of the afternoon and evening but get a second wind at night so his sleep pattern was very erratic. I think this was most difficult for my mum as it left her feeling very lonely.
He only needed carers really for the last 4 weeks of his life - he was an incredibly independent and capable man right up until the end. For the last 24 hours he was in a hospice where he passed away.
The hospice were amazing but it was very difficult to get a bed. The district nurses kept trying to put us off and telling us it would be better for my dad to die at home, when we knew that wasn’t what he wanted (mainly because my mum wouldn’t have coped with that). My advice would be to fight for everything you think your MIL needs and don’t wait. Use all of the resources make available to you, even if you think you do t need them.
God bless x

I often find timelines very vague and to some extent you might just need to take it a day at a time. However, I would say that if you can get hospice care for her final days then definitely take it (if she is happy with that). For our family and the sick relative the bed in a hospice made the whole experience much calmer. Best wishes.

I imagine that at her age and with no treatment things will progress quite quickly. She will be tired, she is not eating much and most of her body’s remaining energy is being diverted to the cancer.

You might find it hard to pin a time line down from her oncologist, but palliative care nurses in my experience are prepared to say more, but it is a piece of string conundrum, not an exact science.

A close relative of mine had ovarian cancer with metastasis to liver and abdomen. Every case is different but my relative was admitted to the hospice and she declined quite quickly and passed away within a week. Get your GP to refer you to palliative care , most of them do Hospice at Home so she may be able to stay in her own home. The palliative care teams are lovely and do everything possible to keep patients as comfortable and pain free as possible xxx

With the kids tell them in stages if you can unless they are older and ask, best not lie either. So granny is unwell, then leave a while for it to sink in, it's serious or age appropriate words, let it in sink in, she sadly won't be getting better. If you do that over weeks or days it might be easier for you easier for them to digest. I had a breakdown in front of my kids it was still sinking in for me. So don't rush it. Tell them also once you have digested it. It's horrible OP and I am really sorry to hear your news. If you was my friend I'd offer a hug and cup of tea while you cried on my shoulder. So I will send you that vibe instead across the net

Your MIL’s oncologist or specialist cancer nurses (typically each cancer area/oncologist has a set of nurses that look after the patients) should have referred her to the palliative care team. These days palliative care means symptom control rather than end of life care, end of life care now a days means the last few days/ weeks of life whereas in lay man’s term this is what palliative care means. The palliative team will be able to help with pain management, feeling sick etc.Her specialist oncology nurses are the people to start this ball rolling. If you (or your MIL) are not in contact with them then start by calling the oncologist or their secretaries and they will put you in touch. She shouldn’t be left with no follow up care. Also find out how her hospital manages with disease progression, ie were I work we have a sort of AnE for oncology, see if she has a similar thing. If her pain suddenly worsens or she is very constipated from her pain relief then this is the place you can go to get her sorted quickly.

This is very good advice.
My lovely gran died 3 weeks ago, (from heart failure, not cancer) and she was cared for at home. The NHS delivered a hospital bed, commode, all the equipment she would need (and collected it after). She had carers every day, and in her last week we had the EOL nurses come several times during the day and night (they were brilliant). My mum applied for attendance allowance for gran several years ago when she got ill, and mum also got carer's allowance in the last 6 months of gran's life.
As for the kids, don't shield them. Let them ask all the questions they have and let them decide how involved they want to be. I was at my gran's side until the very end (and even afterwards when she had passed away - sadly there are practical formalities to take care of then), but my cousins for example couldn't hack seeing her in that state and didn't come round (that's their choice, it's ok too).
Poor poor lady. I hope her end is peaceful, and pain free, as much as it can be. All the best to you all.

Timeline is tricky and from experience it's painful wondering when, how long etc. It's agony. A good question to ask Dr's is "days, weeks, months or years" That helps manage expectations.

https://www.macmillan.org.uk/cancer-information-and-support/supporting-someone/coping-with-bereavement/if-the-person-you-care-for-is-dying this is a great source of info

I had to fight for end of life care. The hospital discharged us to GP. The district nurses said hospice were the people we needed. The hospice said she wasn't close enough to dying...they also have two teams (? palliative and hospice at home) and one hospice team had to refer us to the other team. All of this took days to negotiate and we were left a week without input despite phoning and pleading. Just told to ring the others. Relative died at the end of this week with hospice coming in just 24 hrs before they died. So my advice is don't assume hospices are amazing angels. They are failable same as any service and be prepared to fight if needed. (Sorry)

I think sometimes medical experts are reluctant to give time lines in some cases as it is too difficult to predict accurately.

So sorry about your really difficult situation.

Is your MIL staying with you in your family home? If so then I think it is doubly important to get all the help you can get and fight for a hospice place, if that is what she would want. A good friend died last year from cancer and as others have said, getting a hospice place was very difficult and came much too late in their illness, meaning that their partner and adult children provided end of life care albeit with some in home support. It was incredibly hard on the family, both physically with sleep disruption, and not being able to leave the home much. And obviously very emotionally tough.

Again, I'm so sorry. Definitely speak to school/ college as well, as it sounds like special consideration may be needed.

This. They called it hospice at home, it was awful at the end. I really wouldn't recommend.

We recwntly lost a family memeber who got cancer in her liver - she deteriorated very quickly l am sad to say.
So sorry op.
But echo what others say - find out her wishes and get a palliative care package sorted.