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Are we in the last few weeks?

(84 Posts)
mummynumnum Sat 08-Sep-12 22:42:25

My beloved mil has secondary breast cancer in stomach. Palliative care since two diff types of chemo nearly killed her. Several stays in hospice. Has had stents but bile duct one blocked and attempt to put new one through failed although put one in side. Chose not to have ct scan recently but surgeon implied things have spread. Was stage 4 when diagnosed and has done well to last 2 yrs. Since the last stent surgery she has been in hospice and again nearly died but rallied and came out and was living with us. However, she is now hardly eating, is about 6 stone, has nausea and weakness and has white poo and in pain when on toilet. Are we nearing end? She is buring head in sand and missing appts. Keeps saying she will phone hospice and talk to them but doesn't. Really worried. Should I phone them?

CMOTDibbler Sat 08-Sep-12 22:48:56

I think phoning the hospice, and seeing if they have nurses who will come out to see her and talk about things would be a very good idea.

I hope the hospice are able to help her and you.

kilmuir Sat 08-Sep-12 22:51:04

difficult as they should not be discussing her treatment with you.
would she be ok if you volunteered to go with her to an appointment, express how concerned you are.

lalalahahaha Sat 08-Sep-12 22:53:31

Hello. I don't have any experience of this although I have had breast cancer. Didnt want to leave your post unanswered though.

I think you should phone them if only to talk things through for you. If they cant talk to you directly at least you will have alerted them

Best wishes for a really hard situation x

mummynumnum Sat 08-Sep-12 23:01:24

She said she was going to ring today but didn't so will ask her to ring for advice tomorrow. Due to have oncology appt mon but worried she isn't going to go as dh said he would leave work and go and she sort of ignored the offer. I am happy to have her with us but have two small dc and work in days so I get really worried about her in the day when she is alone.

mummynumnum Sat 08-Sep-12 23:03:53

Thank you for your msg. She has a v supportive family and I have just phoned her daughter and suggested we phone. Her dd wasn't quite as worried as me but I have spent of time reading Macmillan stuff and just worried we are nearing end ESP if we don't get help soon.

Musomathsci Sat 08-Sep-12 23:09:50

She clearly needs some more effective pain relief if nothing else, and she's scared of what is happening and doesn't want to initiate anything herself. I don't see any harm in phoning the hospice for advice. Why should she drag herself out for appointments when she is so weak and poorly? Her GP might be able to come out and see her and get the ball rolling - worth speaking to them too. They may not be able to discuss her condition with you directly, but you can give them information - she's in pain, tell them about the white poo etc (sign that the tube in her side is blocked again - no bile getting through to gut).
Sorry, sounds awful for all of you. I think you are right that she is nearing the end of her life, and the kindest thing to do is to take some action so that she is made as comfortable as possible. Her current existence sounds pretty miserable, and I totally get the 'head in sand' mentality. Some people really hate asking for help.

mummynumnum Sun 09-Sep-12 05:50:34

Yes it has been awfful. She absolutely does not want to go and has fought well for 2 yrs. She has suffered huge anxiety and depression and has had leave it and see attitude often and often left seeking help untlll too late. Don't think she is sleeping much. She is on fentanyl patches and has had driver on occasions. Anyhow my sil and I are going to talk to beer today and see if we can persuade her to phone today. If she doesn't think will phone hospice Monday ourselves. Thanks for advice and will let everyone know how things go.

Haribojoe Sun 09-Sep-12 06:00:23

So sorry you're going through this.

I nursed my Mum through pancreatic cancer at home, I would encourage you to ring the hospice, ours were a great support to us and were able to pre-empt what we might need and make arrangements ahead of time so that we were able to easily access extra support, carets, equipment etc

WRT discussing her care my Mum was very much the same and didn't want to know time scales etc but she told get GP that he could discuss her care with me. This meant that we could all keep informed and that I could directly arrange things like drugs and home visits, again another thing which helped make things a little easier.

Please feel free to PM me anytime.

JudithOfThePiece Sun 09-Sep-12 06:39:37

Do you have any contact with a Macmillan nurse? When my FIL had cancer, my MIL nursed him at home until he passed away and their Macmillan nurse was a wonderful source of support, advice and help to both of them. I didn't think he would be able to stay at home but he did and this was definitely made possible by the Macmillan nurse. I don't know how you get one though - I thought all cancer patients got one, so to speak. But perhaps something to ask the hospice? I believe they offer help at all stages of living with and dealing with cancer.

I am so sorry you're going through this. I wish I could offer more advice. Take care of yourself, too.

mummynumnum Sun 09-Sep-12 07:07:26

Mil has Macmillan nurse and hospice people. She has sort of kept them away from us but in the summer we did call ourselves and they were v helpful and I have said to her children that it has got to stage that we must call them if worried and not be worried about upsetting her. It has been a tough 2 yr battle and nobody wants to lose her but equally I want her to have the best care. She always said she wanted final days in hospice but has all but moved in with us and has been saying about ending days here. I have been very open with my dc (6 and 2) about nanny being I'll but I am not sure this is best for them and I can not give her the 24hr care she needs as cannot take leave from work unpaid. It is so sad. She has never drank or smoked and is so kind. I also worry that her dc are not q aware that the end is almost here and think may come as a shock. We have had so many scares that think they think she may rally again. God willing she may. She is so anxious and horrified about the end that I also worry about her being so frightened as the time nears. sad

mummynumnum Sun 09-Sep-12 19:54:53

She has had a good day today!

JudithOfThePiece Sun 09-Sep-12 20:39:15

Very pleased she has had a good day today and I hope that she does indeed rally again!

You've got a huge amount to deal with at the moment, haven't you? It must be a very difficult time for you; you are so obviously trying to do the best you can for all of your family and clearly care very much about everyone involved. I hope everyone else realises how lucky they are to have you as part of their family!

I obviously have no idea about the rest of your family relationships and what the rest of the family want to happen here but my gut instinct tells me you're right that this may be too much to ask of you and your DCs. Forgive me if I'm out of line here, but I just wanted to say it's ok to think about that. Perhaps you could try speaking to a more general Macmillan helpline to get some advice on how best to proceed from here, to help your MIL, your DH and your DCs? They have so much experience of this sort of heartbreaking situation and the advice of a third party who is not emotionally involved could be very useful.

Northernlurkerisbackatwork Sun 09-Sep-12 20:48:27

When my bil was dying and sister was struggling to get support I rang the Macmillan centre at the local hospital and spoke to a fantastic woman there who was very helpful. Unfortunately bil's actual macmillan nurse had been useless. I agree you need to get some more support. It may be possible to get carers to come in and help with mil if she stays with you.

It's a hard thing to think about but a death at home can be a really healing experience for the whole family. Hospice is the next best and imo nobody should die an expected death on a hospital ward. A lot of people do but it's not the ideal place to die. However for a death at home to be possible you have to get outside support. Very few people can manage the huge strains alone. So whatever mil does I think YOU would benefit from support from Macmillan or the hospice to talk about how you could make it possible for her to die at home if that is what you all want. For example you can get a hospital bed loaned so that you can adjust her position. Meds can be given through a syringe driver and should include pain relief together with drugs to manage agitation and to dry up secretions in the throat so that the patient stays comfortable and has dignity.

JudithOfThePiece Wed 12-Sep-12 20:44:37

I hope you're having a positive week x

mummynumnum Thu 13-Sep-12 19:43:36

It has been a much more positive week. She has been less weak and sleepy. Some pain and not eating but better than last week. Thanks for asking

mummynumnum Fri 28-Sep-12 19:53:25

Thought would give an update on dear mil. Still living with us. Barely eating but finally listening to docs and trying these nutritional shakes. She hates them but manages one a day. Still v weak. Had scan the other day and saw oncologist. Tumour in stomach not grown but the lumps on belly are metastases. Main prob is bile duct blocked and very dilated. They couldnt get to block stent when last tried and said somehibg about going through side and liver but said they were very reluctant to try this unless really had to. She is feeling rotten today and phoned hospice. She said they did not offer to take her in but I did say she didn't ask either, so all in all she is still slogging away trying her best.

She's very strong isn't she? Ok - how are you all doing? This is a massive stress and strain for you.

mummynumnum Fri 28-Sep-12 20:22:32

Yeah ok. Had a massive guilt this week as lost temper with her for interfering when I was disciplining children. I reminded her it was my house my rules and she got all upset saying she would move back to her house even though she was I'll. Sigh! She didn't of course but I did try and tell her I am doing my best with her, my 2 dc and my ft job and that she needs to give me a bit of space sometime. It is hard at times but I said she could stay and I am committed to that!

Ah yes - being ill doesn't mean you can't also be quite difficult to live with sometimes. I think you're doing great. For your dh caring for her is the natural order of things, for you it's a labour of love. That's really commendable.

Have you let your work know how things stand?

mummynumnum Fri 28-Sep-12 21:59:53

I have told some friends at work and will tell the Head (am teacher) if struggling as not getting lot of sleep ad feeling bit wired at timesblush

That's sensible because there are likely to be some times when you can't make it to work. How is your dh doing?

mummynumnum Sun 30-Sep-12 17:25:40

He is doing ok. Frustrated that she is reluctant to drink these shakes. She got weighed and now 6stone 10 so lost another 3 pounds since her op in early august. She is sleeping on sofa as speak. Seems to have one good day and then one bad day at the mo.

CHST Mon 08-Oct-12 14:17:48

hello mummy just wanted to offer some support. My mum lost her partner in July from Prostate cancer. I had to write something as he had the same towards the end...kidney stents that kept blocking. In the end, there was nothing more that they could do. His cancer was a really rare form that mutated..
towards the end, he stopped eating also. He still drank but very few sips. There is nothing more heartbreaking than seeing someone slip away like that. you know it is going to happen, just not when. We had the good day, bad day scenario too...somehow I never gave up hope that he would recover, especially on those good days.
I'm glad she is in a home environment. That really is the best place for her. Mum's partner had care at home for the last days. They were surprised how long he held out for. The fight in some people is amazing.
Do you have the macmillan nurses coming or similar? It really makes a huge difference. Especially with regards to pain relief.
Are you all able to get some respite? That is also important I feel. My mum never allowed herself to do anything than be with him all the time.
Sending lots of hugs and strengths and if you have any questions, just ask. Take care of yourself x

mummynumnum Sat 13-Oct-12 06:37:16

Thanks for the recent message. I am sorry to hear about your mums partner. Despite a not so bad scan result saying tumour not overly grown, mil is not doing well. Not sure whether it is increased ascites, dilated bile duct or just general state, but she is not good. Barely eating, about 6 stone now, looking v rough, not going out. Feeling particularly rough on 2nd day of patches. Docs said may need to switch to pills. Taking extra oramorph at mo. Throwing up what little food she has and has nausea and pain. On top of that saying a few nasty things about my dh and I about our parenting skills (whilst not perfect we are firm but loving to our two dc). So it is not great. Hospice doc said to go up Mon so she can have a look at stomach (v distended). surgeons not keen to do anymore after failed attempt to unblock bile duct stent in the summer. Hoping hospice may take her in to monitor ESP if they are going to tinker with her pain relief.

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