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Life-limiting illness

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Original poster

Don't know what to expect

16 replies

DearDinah · 21/12/2013 17:36

My MIL was told in Oct, chemo has to stop for her advanced colon cancer, she has mets to liver/lungs. She's only 61.
7 weeks later and she's utterly exhausted, lost loads of weight, has swollen feet/ankles and has to take oral morphine for pain in stomach/back.
Is it usually this quick? We have no idea what to expect, she never wanted to know the prognosis neither did FIL.
The GP just up her painkillers if she goes to them, but is there anything else we can do?! She had to crawl up the stairs to bed today she literally couldn't keep herself upright.
Does anyone have any advice? FIL is going to look at getting a stair lift put in, but are we running out time? So, so sad :,(

OP posts:

Vintagebeads · 21/12/2013 18:17

Get in touch with McMillan nurses they are wonderful,there is no need at all for your MIL to be struggling in any way,they can arrange help (in the form of carers or the district/cancer nurse) come in and help both for medication and equipment.They have an excellent way about them that my Dad seemed to respond to really well.

I am so sorry your all going through this.I don't know how to do the other links
www.macmillan.org.uk/HowWeCanHelp/HowWeCanHelp.aspx

LittleRedDinosaur · 21/12/2013 18:23

I'm so sorry for you. I definitely second getting in touch with Macmillan- they are brilliant.

Original poster

DearDinah · 21/12/2013 19:10

Will the nurse come to talk to us at our house without her knowledge? MIL sees her nurse once a week, but I suspect doesn't say it like it is, she doesn't like a fuss, we're her support team, but we'd just like more idea to know what we could/should be doing, she says she wants things to stay the same, but it just can't. FIL does so much for her & doesn't like to show he's struggling but he came to see us today without her knowing & it's clear he's running out of steam.

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Vintagebeads · 21/12/2013 20:22

Give them a call.They deal with this all the time,your MIL reaction -I imagine- is totally normal in wanting everything to stay the same.
My Dad had an aversion to taking morphine ...because that means your sick but they talked with him and gave him patches (instead of tablets) and was so much better for it.They have a way about them.

But you all need the support because when the time comes when she does need more help it will be easier for all of you if things are in place.
If it's any help my mum dealt with them all the time, my dad was the one sick but she was the one who talked on the phone to them when say the painkillers were not working or he was having a tough time.
They are excellent.

Original poster

DearDinah · 21/12/2013 20:56

Thank you for your words of advice, I truly appreciate it & I'm so sorry for what you have been through. X

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ShrekTheHalls · 21/12/2013 22:47

yes Macmillan will support you to support her, if that is her preference. they are fantastic ime - also mil could (should?) still be supported by the chemo centre, who can keep her as comfortable as is possible. Definitely give mac nurses a call.

PacificDingbat · 21/12/2013 22:50

Oh goodness, yes, MacMillan, all the way!
They will support you, and your MiL if she wishes.
Nobody should have to do this alone .

Fairylea · 21/12/2013 22:51

I nursed my gran through terminal bowel cancer at home in 2003. The main thing I found essential as it progressed was getting the correct combination of painkillers (mainly morphine) so grans pain was controlled. Mcmillan really are wonderful. As things progressed they came and stayed with us overnight so I could sleep and gran had someone with her (gran was terrified of hospitals and our main aim was that she remained at home).

I am so sorry. Thinking of you x

basildonbond · 22/12/2013 19:59

We're going through this right now with my mum but I'm afraid that Macmillan have been utterly crap - no help whatsoever and the first nurse she was assigned was so unpleasant that I am going to launch a formal complaint once this is all over :(

Original poster

DearDinah · 22/12/2013 22:22

So Sorry to hear that Basildon, not at all what you need to think about at a time like this, could you get assigned another nurse?
MIL's first mac nurse was useless too, she used to just cry all the time which just annoyed mum, she's seen this new one twice now but doesn't really say much about her, they have a meeting with macmillan next week about something (don't really give us much info) mums started to stop eating the food dad makes her though, he's frustrated, she's frustrated we all are. It's just the shittest time ever.

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Vintagebeads · 22/12/2013 22:31

About the food.The gp can organise on precription these high energy drinks or shakes that are a meal in a small drink packed with calories.I am sorry to hear about dealing with shit nurses...I cant imagine that on top of everything else.

Ilovemydogandmydoglovesme · 22/12/2013 23:14

So sorry you're going through this Dinah. We lost lovely DMil last year to breast cancer. When it got to the point where she could hardly get up out of her armchair DFil just couldn't cope anymore. She couldn't walk through to the loo, much less get upstairs, and she slept in her armchair for a few nights before they admitted her to hospital.

She was there for three weeks, slowly getting more and more sleepy, and that was it really.

It makes me cry again just to think about it. She was only 64. We miss her all the time. The dds always talk about her.

DMil used to like us reading to her, or doing her hair and nails and make up. Things we could do whilst she was in her hospital bed.

I'm so, so sorry for you. Just make the most of her company while you still can.

Jollyb · 23/12/2013 18:02

Dinah - how are things going today? Have you managed to get in touch with the Macmillan team?

Original poster

DearDinah · 23/12/2013 19:44

Hi jollyb, thank you for asking, MIL & FIL have an appointment later in the week to talk to someone from the macmillan centre, she's feeling a little better now she's managed to eat some carbs. The GP has given her some steroids for the swelling in her legs, it's just hard to know from one day to the next how she's going to be, I don't suppose anyone can tell us what to expect it must differ so much from person to person, her pains not so bad, it's just the tiredness getting to her.
I'm currently in a 2ww TTC, hoping & praying this is our month, I think the thought of a grandchild would really lift her spirits now, & ours
Thank you for thinking of me, with her not being my mother it's hard to know who to talk too, DH has buried his head, I don't know if I should be doing more.

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Jollyb · 23/12/2013 21:06

Don't be hard on yourself - am sure you are being a great support.

The steroids will probably give her a bit of a boost. They can increase energy levels and help with appetite. They may also reduce liver pain.

Glad to hear she is being reviewed by the Macmillan team later in the week. If there are any problems before then there will be a team on call over Christmas. Often the easiest way to contact them is by phoning the local hospice.

Good luck with your 2ww.

ShrekTheHalls · 27/12/2013 00:55

just checkin in to see how it's going....good luck ttc from here too

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