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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:
Daffyduck1 · 09/02/2016 08:01

Please could I join you. My DH has terminal cancer at 46. We thought he had beaten it but it has spread and he is deteriorating quickly in a lot of pain. We have four young children, two with disabilities. I'm struggling to put one foot in front of the other. I can't imagine life without him, we've been together 18 years.im scared how I'll cope alone with the children. I'm terrified that I'll get ill and leave them too. I can't eat, struggle to sleep, have pain every where. It's as if my heart has been ripped out and I'll never feel whole again.

NannyPlumForPrimeMinister · 09/02/2016 09:24

Oh Daffy, that is awful, I am thinking of you. Have you managed to access any of the Macmillan/hospice at home services to try and give you support? Flowers

whatisforteamum · 09/02/2016 10:23

Hi Daffy that is just awful for you all please do post away as sometimes it helps just to get it out there.Nannyplum im wondering if your Dad is like mine as he has pushed himself at times.
Surprisingly Dad has been quite well getting about and organising the 50th do for everyone.His nurse sent someone to heighten his loo and chair as the pain in his hip and legs can get bad.His x ray showed something but the gp needed confirmation from the hospital first.Weirdly he has something nasty on his thumb he said it looked like cancer cells like the smoking ad on tv and he was given antibiotics.
Anyway for someone with aggressive cancer to still be getting about 11 months after chemo stopped working i am amazed and grateful.
I am thinking of you all on here and your families.xx

NannyPlumForPrimeMinister · 09/02/2016 10:40

whatisforteamum I chatted with my mum again this morning about exercisebikegate and we have decided that he either must have dreamt it or imagined it Confused. He can barely walk and can't lift his legs to get them on to a foot stool when he is on the sofa so there is no way he could have mounted it as it is really tall. He also struggles to breathe so there is no way he could have peddled it, or have got his feet into the pedals as they are really swollen and he wears these big clumpy orthopaedic slipper boots now.

I think his eyesight is also being a bit affected, so I think there must be one of the tumours pressing on that area.

I really don't know what sort of deterioration to expect with numerous brain metastases or how quickly Sad

NannyPlumForPrimeMinister · 09/02/2016 10:44

Sorry, meant to say whatsfortea that am glad he is still doing reasonable well, I hope the party is great :)

Original poster
CharleyDavidson · 09/02/2016 19:10

I was wondering, Nanny, if the physio people had brought one of those chair exercise bikes. The physio at Macmillan used to get Dad on those despite him really struggling with his mobility the rest of the time. They were powered and did some of the work for him. Then I read what you posted again and it says he got on your Mum's bike. Weird if he did imagine it.

Sorry to read about your DH, Daffy. Flowers

OP posts:
JenniferYellowHat1980 · 09/02/2016 19:57

NannyPlum, I think confusion can be quite common depending on the cocktail of drugs. My mum was saying she needed to go jeans shopping and sometimes answered questions that hadn't been asked.

Daffy, I'm really sorry your DH is so unwell. Cancer is so unfair, especially when it brings someone with little ones down.

Hjb2410 · 13/02/2016 11:41

Please can I join this, ive no idea where to go or who to talk to about it all.

My grandad was diagnosed with prostrate cancer june 2014 however it's pretty much spread throughout his whole body now.
He was a total rock for the family when my mum passed away very suddenly 23/12/14. In July 2015 he was given 1-2 years to live while having radium treatment. January 2016 he had a big heart attack but came home from hospital on 1/2/16 however from 3/2/16 he is a different man altogether! He now has a hospital bed in the dining room, is bed bound, won't eat or take his tablets, is very confused and sleeping all the time. The nurses have said we have weeks now left with him.

Myself and my partner are getting married july 2016 we booked it the earliest we could in the hope that my grandad and other members of my family who also are poorly could be there, however im now faced with the fact my grandad won't be able to be there? Nieve I may have been not even considering it before but I just wanted him there.

there are me my dad and my grandads lady friend working out Rotas to care for him are he can't be left on his own at all. I'm struggling with work getting time off. They are aware of the situation but still expect me to give everything like I did before but I'm exhausted im working full time and caring for my grandad in the evenings and sometimes even before work.
I just don't know why to do, I don't know how to deal with it and im not ready to say goodbye when I thought we still had time left with him. I'm sorry that ive rambled I just needed to get it off my chest.

Beeswax2017 · 15/02/2016 08:54

This reply has been deleted

Message withdrawn at poster's request.

eitak22 · 21/02/2016 23:23

Hope you don't mind me joining. My Dad is at end of life now, whatever that means as we have been told many times over last few years to prepare for the worse which makes it so difficult as he has always bounced back. Currently he has a chest infection that drs wont treat with antibiotics and which will no doubt become pneumonia and probably making him very poorly if it doesn't kill him.

Truth be told i'm exhausted and just want him to not be in pain. Have so much respect for my mum for caring for him as well as she does and all the sacrifices she has made.

OllyBJolly · 21/02/2016 23:43

This thread popped up on my active list and made me smile. It's such a lovely supportive cosy corner of mums net.

I'm just back from the hospital. My sister booked in today for the op to remove one of her brain tumours - hopefully the one that is causing most of her issues.

I am so impressed with the NHS. We were asked to be there for 2pm. The student nurse booked her in right away. Nursing staff all excellent. Four doctors and the anaesthetist came throughout the afternoon to introduce themselves and go through what will happen tomorrow. This is Sunday - where is this Monday to Friday NHS the politicians talk about?!

She's feeling much happier about tomorrow and feels she's in safe hands. All in all, today went much better than I expected.

honeyroar · 24/02/2016 00:31

Hope all has gone well for her OllyBJolly.

OllyBJolly · 24/02/2016 22:37

Thanks, Honeyroar. Looks as if surgery has been very successful. Surgeon thinks he has removed most of both tumours. He thought he couldn't do much with one because it was growing into brain tissue but apparently it was "crunchy" so he got a lot of it out. She'll start chemo in a couple of months. She does have one slow growing tumour which is inoperable because of position but the surgeon feels it's not causing any issues and hopefully won't for a few years yet.

She's had no seizures since the op (she was having 8-10 per day) and has more feeling and movement in her left side than she had previously.

Her care and treatment have been exceptional - I'm just so blown away by how much time and attention the medical and support staff have given her.

Any ideas on how to thank them? Do doctors and nurses get sick of chocolates? I do plan to do some fundraising for the neuro unit but would like to do something that makes the staff feel appreciated.

whatisforteamum · 25/02/2016 07:45

So pleased about your sister Ollybjolly and i hope each day she continues to improve.I agree the NHS aare fantastic.This weekend we had a celebration of Mum and Dads Golden anniversary and he thanked the NHS as without all the treatment he and Mum wouldnt still be here :).My brother sang and nephew played a saxaphone.A lovely day after a hard 18 months.

Hi eitak22 and hjb2410 and welcome.I am sorry you have to join us and hope you can vent and offload as someone on here can lend support.

MaggieMcVitie · 26/02/2016 15:51

Hi there, Ive started a separate thread for this but had no replies. Then I saw this thread and thought it would be more appropriate to post on here...so good to find a support group for relatives.

DH was diagnosed with cancer of the tongue almost 5 years ago. After extensive surgery he made a good recovery and has been clear (although we have had the odd scare) ever since.

About 10 months ago he began to experience bleeding from his mouth at night - never very much but his pillow would be stained in the morning. He reported this to his oncologist who did bloods, CT, chest x-Ray but thankfully all came back clear.

Next Friday will be his 5 year anniversary and we have an appointment for one of his routine check ups with his onc. Should be a time for thankfulness and cautious celebration...except...he has developed a persistent cough and ulcerated areas around the edge of the graft on his tongue. It's very sore and affecting his eating. His voice sounds hoarse although he doesn't seem to have a cold as such. Buggar.

He has spoken to his oncologist who said as next Friday's appointment is arranged he will wait to see him then, there's nothing available In the meantime anyway.

So we're back to playing the waiting game. He not sleeping and very worried. I'm worried but trying to convince myself he's just run down, has a virus or something. Can't believe the irony of the timing. Bloody cancer.

MaggieMcVitie · 26/02/2016 16:23

Sorry for double post - glitchy iPad Confused

eitak22 · 29/02/2016 11:20

Thanks whatisforteamum Love the name by the way! Olly Glad to hear the operation seems to have been succesful, that's great news about the reduction in seizures.

Maggie Sorry to hear about the wait, its so difficult when you need an answer either way. Will be thinking of you.

Can i ask what everyone has done in regards to work? I'm still at work and they've been great but i feel like im letting people down even when i'm not. I guess because i know that there's a lot on, had to pull out of a project fairly last minute as i couldn't risk not being able to get to parents.

EsmesBees · 02/03/2016 22:30

Hello all. Mind if I join the thread? Nice to be around people who understand.

My mum has recently been diagnosed with a cancerous brain tumour. The doctors have said they will try and halt its growth with radiotherapy and cheomo but they prognosis is poor. She's been in and out of hospital since November. I range from days when I feel I'm holding everything together pretty well, to days where I feel stretched so thin that something will have to give. I feel torn between caring for my mum, work, looking after the baby, renovating the house and trying to prop up my dad and sister. Sometimes It is so hard to be the strong one.

EsmesBees · 02/03/2016 22:34

eikak with regards to your question about work, mine have been pretty flexible in terms of letting me make up time I've taken off for my mum's appointments etc. in the evening. I know what you mean about feeling you are letting people down. Some days I really struggle to concentrate on work because of all the stuff going on at home.

eitak22 · 03/03/2016 14:08

Esme sorry to hear about your mum but glad your work is being flexible. Understand completely about being the strong one, i have 2 half sisters who aren't great and have only just realised how serious things are. I on the other hand support both parents despite being the youngest. sometimes i wish i was the one being protected.

I'm struggling with focussing on work if im honest, this week was better than last but then dad has been more stable. Doesn't help im covering someone as well as my job at the minute either.

Original poster
CharleyDavidson · 06/03/2016 20:48

Just coming on to let you know that I'm thinking of all those who've had the need to join this thread. Glad that it's seen as supportive, it certainly was for me.

Flowers all round. xxx

OP posts:
eitak22 · 11/03/2016 10:45

Update: Dad died on Saturday, not unexpected but not easy and i'm holding on to the fact he is no longer in pain. I know i was only in this thread a short while but thanks to all of you for your support.

You're all Star

whatisforteamum · 11/03/2016 12:00

Im so sorry Eitak and i hope your Dad was peaceful at the end.Please continue to come on here.My thoughts are with your family Flowers

Original poster
CharleyDavidson · 11/03/2016 16:59

I'm thinking of you, Eitak. It's a difficult time. Take care. Xx

OP posts:
40nanny · 11/04/2016 20:02

Coming on here to join & sorry to read there are so many families going through this .My dad who got diagnosed with advance prostate cancer end of January& has just progressively got worse,now back in hospital for ct scan to see if it's went to stomach,just such an emotional time,he's so thin now& being sick.
It's just awful to watch a loved one going through this,life is so cruel.