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Life-limiting illness

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Original poster

A thread for those supporting relatives with life limiting diseases.

778 replies

CharleyDavidson · 13/07/2015 19:42

I know a lot of people come onto here because they are suffering themselves but I wondered if there would be a use for a thread for those who are supporting those who are suffering. Being strong for someone else is HARD and this could be a place to discuss the things that we are up against.

My own dad has a prognosis of a few months for a cancer diagnosis and it's just awful to see how ill he is and how sad he is about things. :(

OP posts:
Willowkins · 27/12/2017 10:40

Might I join in? I had some lovely support on another thread and that really helped me to cope.

My DH restarts his chemo today after a Christmas break and I just know it's going to be hard because he gets overtired. Also, MRI next week will be pivotal to ongoing treatment (more surgery/simply palliative).

Flowers and Gin to everyone else going through this.

Kernowgal · 27/12/2017 16:05

It is, MyGuideJools, it's so bloody hard. My aunt and uncle travelled down today to see mum and it was so good to see them. I'm going to try to get out to see friends tonight for a change of scene but the weather isn't ideal.

Hello Willowkins, and so sorry to see you on this thread. I hope the MRI brings the news you want.

Willowkins · 28/12/2017 14:02

Thanks Kernow. It was a very long day yesterday but another chemo done and dusted. We get the results of the MRI in mid-Jan.

Kernowgal · 02/01/2018 09:19

Off to the hospital today to meet with the palliative care team before mum comes home. I'm writing down questions to ask them because I think we will all be a bit rabbit-in-headlights once we're there.

Flockoftreegulls · 03/01/2018 11:45

Hello, love to everyone here. My mum has ovarian cancer. She kept it from us to start with, didn't tell us that oncologist was the 'consultant' she was going to see. Now it all makes sense.
I live in a different country and travelled over to be with her for recovery from radical hysterectomy. She told me that they didn't know what it was and were waiting for pathology. My dad thought she had told us. Got to go home on Friday and I don't know how I will get on the plane.
Don't know what will happen or how serious it is.
Sat in my old bedroom like a teenager crying but not loud enough for anyone else to hear.
I am so sorry for all of you going through this with your own illness or supporting someone else. Badly needed to get it off my chest.

maggienolia · 07/01/2018 14:12

Hi again. Marie Curie have been in touch, they're coming to do some night sits.
Dad has another chest infection now, he's tired and loses his thread when he talks.
Will try and get up to see him soon but not sure about taking the girls. On one hand it may be the last time we see him, but I wonder if it's better if they remember him the way he was than how he is now.

maggienolia · 08/01/2018 09:51

More bad news - the nurses have been leaving the slide sheet on the bed after moving him (I was trained to always remove it? ?)
Anyway he slipped out of bed and had to be taken to hospital, nothing broken so back home.
Mum's feeding him now, he's asleep most of the time.
I'll definitely go up with DD1 as soon as we can.

maggienolia · 10/01/2018 14:00

Back in hospital again - pneumonia.
This seems never ending.

Flockoftreegulls · 10/01/2018 14:17

Sorry to hear your news, Flowers
I am on pins today as my mum has an appointment with her consultant to find out what the treatment plan is now that she has her surgery.
I hope you are ok xXx

Thymeout · 10/01/2018 15:52

So sorry to hear about your mum, Flock. Does she know what stage she is? TwitterQueen has had 2 threads on General Health about her diagnosis and treatment. You might find them helpful in giving you an idea about what the treatment involves.

If they know it's cancer, they usually give 3 cycles of chemo before the radical hysterectomy etc, 'debulking', and then 3 more afterwards. Do they know for sure that it is cancer? I don't want to raise your hopes in vain, but I had a massive tumour that my local hospital thought was cancer but the teaching hospital I was referred to disagreed, so I wasn't given chemo before my op. My surgeon was optimistic but warned me that they wouldn't know for sure till they had the results from the lab. I'm fine, just have to be monitored in case there's another one that has turned malignant.

When you know what you're dealing with, the Ovacome site has a nurse you can ring for helpful advice.

Don't Google. Flowers

maggienolia · 16/01/2018 08:54

He died this morning. Still all in shock.

Flockoftreegulls · 16/01/2018 09:19

Maggie am so sorry to hear that.
My thoughts are with you xXx

Flockoftreegulls · 16/01/2018 09:25

Hi Thyme they were sure it was cancer because of bloods I think. She had raised proteins.
So she went back to the consultant and we're gobsmacked. He told her before the op she should prepare herself for chemo and the tumour was apparently very large.
Now he says chemo not required and they are confident that they got all of it.
Can't quite believe it. They want to see her again in three months and if all OK then she will be monitored for 5 years.
I was so worried about how chemo would affect her, including afterwards.
Tbh after the awful few months we have had (lost 3 relatives in 6 months all under 50) I almost feel a bit suspicious like it can't be true.

frazzled3ds · 16/01/2018 20:04

Thanks for you maggie, having lost my Dad just over a month ago I have some idea of how you'll be feeling. Even when you know it's coming, it's still a horrible shock. Thinking of you all xx

Thymeout · 18/01/2018 12:08

Flock

Do you know the actual diagnosis? It sounds v much like mine, which was also very large - 2 kilos. I had a Mucinous Borderline Ovarian Tumour. My Ca125 blood test was 130. Normal is under 30, but many patients have scores up in the thousands. 'Cured by surgery'. I'm being monitored - ultrasound and bloods - for 5 years, too. They do sometimes recur, and a small percentage mutates into low-grade cancer, hence the monitoring.

Whether Borderlines should be classified as cancer is v controversial. Some docs still call them cancer, but the treatment and outcomes are very different.

Might be something else, but it's v unusual not to have chemo with ov ca. I couldn't believe it, either. My local hospital told me it was inoperable, just chemo. But Borderlines are quite rare, especially in post-menopausal women. Fortunately, I was transferred to a teaching hospital.

V pleased for your mother and you. Great news!

Thymeout · 18/01/2018 12:15

Maggie

So sorry to hear about your Dad. Thinking of you and all the family.

Flockoftreegulls · 18/01/2018 12:28

Hi Thyme I don't know the diagnosis because my mum is not telling us things. She told us it was a cyst. My dad told me the truth but I haven't seen any letters. He tried to take in as much as possible in the appointments but he said he thinks she would have preferred not to let him go with her. But he insisted.
She hasn't coped very well. Which we all totally understand.
I will try and find out more. Thanks for the info. It is very strange in a way being told that it's OK when you have mentally tried to prepare for worse news. It's a relief but more complicated than that. I'm not complaining though.

kemptownlady · 23/01/2018 18:00

Hi everyone, I'm hoping for some advice please. My best friend was dx with stage 4 bowel cancer 5 years ago. Shes' gone through a lot of treatment since then. Last year they found that the cancer was back in her liver but this time rather than being one lump it was everywhere and inoperable. She's been doing brilliantly on chemo despite being told it was incurable. But in the last few weeks she has deteriorated massively and when I spoke to her today she told me that she may not recover. I'm hoping I can go and see her on Sunday as she lives a couple of hours away. thing is, my mum died from cancer just over a year ago after only being ill for a couple of months, I'm still not over losing her, and I'm afraid that I might get upset when I see my friend, or that I'll say the wrong thing. I just want to go and see her, give her a massive hug and have a good long chat with her, but I'm afraid of making things worse. Can anyone give me some help? I'm finding this all very difficult if I'm honest.

Willowkins · 24/01/2018 13:54

Finally got the results of the MRI and a new met has appeared in the liver. So still inoperable and the chemo obvs not working. Next up, another CT scan to show what to do next - either Carboplatin or FOLFOX. Does anyone have any experience with either of those?

Willowkins · 24/01/2018 14:11

That should say Oxaliplatin not Carboplatin

Kernowgal · 25/01/2018 14:20

@Kemptownlady - definitely go and see her! She'll be delighted to see you. My mum's terminally ill but she's really enjoyed having people to visit. You might both be a bit upset at first, and probably when you say cheerio, but that's entirely normal and shouldn't stop you visiting.

I doubt you'll say the wrong thing, especially as you've been through all this with your mum, so you'll have the sensitivity to know what to say. And to be honest, even if you just sit together and talk about nothing much at all, I'm sure your friend will appreciate that too.

I'm sorry for your loss, by the way.

84CharingCrossRoad · 26/01/2018 19:57

Hi. Newbie to the thread here...DP Is getting towards the end. He is sedated now so he isn't in pain... The hospice staff have been amazing.

Kernowgal · 26/01/2018 20:39

Welcome, and sorry that you find yourself here. Expecting to be in your position in the next couple of weeks with my mum. How are you coping?

84CharingCrossRoad · 26/01/2018 21:14

Very sad. He has three adult children and I have a son.
He is not with it at all. I was there from 9.30 till 3pm today...

84CharingCrossRoad · 29/01/2018 14:15

DP died this morning at 2.50am. We didn't get to the hospice in time. One of his favourite nurses was with him at the end. Sad