A thread for those supporting relatives with life limiting diseases.

[CharleyDavidson]

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. :(

My dad is on morphine too. It's another step down a horrible path that frightens me so much. Tonight my mum has told me that whilst my dad doesnt want to hear his prognosis when he goes to hospital, my mum feels that she will want to know. Im worried how this will be for them both.....and for me as well. I respect my dad's feelings that he doesnt want to find out how much time he may have but I also want to be there for my mum and I know that she will need to share the news with me probably. The days roll into one, another day gone and never to see again. I keep thinking back to memories of my childhood, sweet moments of my mum, dad, sister and me. I love my dad so much, I feel bereft even at the thought of losing him. But I know I have to keep strong for him and my mum, as well as my 3 disabled DC. I cant sleep, cant focus but have to show a positive side to them. One DC is already suffering from depression and anxiety, cant face school as a result and I am scared how my dad's illness is affecting her. Another DC just been diagnosed on ASD as well as other serious health problems. My 3rd DC also has serious health problems, emotional and physical and they all require so much of me. But I feel that I need to (want to) be there for my dad as time is running out. I feel so terribly torn and am just so so sad and helpless.

I keep thinking back to my childhood and all the wonderful things they have done too. Why didn't I take more time to appreciate every moment?

You have so many things pulling you in different directions Olly. Look after yourself too.

Dipping back in.... How fast do you find things move in terms of investigations, and then a treatment plan? I'm having to sit on my own growing impatience.

Summary: Mum with cancer metastasised in lungs; this was confirmed mid Feb17 after a lung biopsy (initially told things looked suspect in Nov16, after months of various diagnostics). Primary cause still tba, tests today were inconclusive so more tests are needed, timeline next 3 weeks or so. No treatment plan yet. On the positive side, recovery really good from the biopsy and only real symptom (which was the red flag last summer) is lymphoedema in arm/hand.

Is this all quite fast in real terms, so am I being unduly concerned? In 18ww terms it's quick, but it guess yeah, it's never going to feel quick enough. It worries me though.....

Thanks. Strength and deep breaths to all supporting. It's shit. One day at a time.

to all on the thread, new and old.

When Ddad was put on morphine we knew it was one step closer to the inevitable. He'd not wanted to hear his prognosis. Then his consultant told him at one point that he had months, maybe a year left. It was a real blow to him, to find out and I wish he'd never been told as his state of denial had been saving him from being as depressed as he then became. He was also a young 69 and he did set about sorting a few things out for Mum, but still wouldn't discuss prognosis, his funeral or anything else. When we found out, when he was finally hospitalised for the last time, that he had days or weeks left, they spoke to him (gently) about it. I will never forget going back into the room and seeing the way he spoke to Mum. He was very ill and confused, but you could tell that it had sunk in and he was shaking his head quietly lamenting that his time was here. Brings tears to my eyes to think about it.

It's a difficult, difficult thing that you are all going through. So all!

My grandad's cancer has moved to his brain now and is affecting his behaviour. He didn't want a to go into a hospital so my grandma has been caring for him at home, however she's 86 and can't manage so well now that he's so agitated and confused. He keeps trying to get up and pull his catheter out.

I'm taking leave this week to help care for him, will also take round a different meal for grandma every day as she has no time to cook and won't eat ready meals/snacks.

What else would be useful? I could read to him but I think he's too far gone to listen. Or maybe just hearing a voice would be comforting? Any advice? I've never lost anyone before, I'm trying to do everything I can to help but it's all so new to me. Thank you.

shock, can macmillan nurses or district nurses help? Is there a local hospice you can contact who will have details of further home care to help you and your grandma?

Can anyone help me?

Have posted earlier re df having terminal pancreatic cancer, early feb diagnosed and told apox 6 months left, palluative chemo offered but only would extend life by a few weeks if that so df declined.

Df getting frailer, can barely eat, all as expected, however after eating a small chicken s/w yesterday was ill during the night, vomited badly.

As a resukt he is feeling so washed out and lethargic he has said he wishes itwould all end. He isn't depressed,is very pragmatic about his fate, he ism't in pain from the cancer as it isbeing managed with morphine.

What can we do to help? Howcan the gp / palliative nurse helo?

The issue isn't pain from cancer, it is his rapidly declining appetite and pain / discomfort when eating that is the issue and how washed out and drained he is.

Would a stay in the hospuce that has been mentioed by nurse re monitoring pain relief helo when it usnot the cancer pain relief that is the issue?

I rang the palluative nurse and he isbooked in for a visit tues asap when they start back, he does not have the (apprpriated?) Medicines that the district nurse comes to dispense so no point calling them....

I'm struggling with this and more so as it's so out of the character of my dad that for him to say it means it must be bad x

Thanks if anyonecan help

Hi all - sorry that so many are going through this.

My MIL has been unwell lately and today a scan showed cancer in her lungs and liver

We don't have all the facts yet. She is about 70 years old and has been in poor health for many years.

At the moment, the doctors are talking in terms of treating the disease but have not yet given a clear prognosis.

It's so worrying 😰

I am writing a thread i just set up, completely new to this. I am David and my wife is dying of cancer, just diagnosed and a shock, especially her not seeing our young son grow up. I had not dreamt there could be such kind and wonderful people out there offering their help and also suffering so much too. Be strong, as I keep telling myself..... and love and enjoy every second of life xxx

So sorry, David. I saw your other thread but didn't know what to say.

I recommend the Macmillan site - it is very supportive and helpful, as is the Marie Curie website.

My sister died young (32) and it is very sad and seems so unfair.

Your wife's diagnosis must be the most appalling shock

Hello and welcome all who are newly here.

One thing I learned was that DDad was very anti-hospice. But once he broached it with the support of his Macmillan nurse, he saw the benefit. He never actually went onto a ward but did make good use of the day patient programme they had. They gave good support to him in terms of counselling as well as physio and medical advice.

David, I was just reading your thread and thinking of you. A colleague of mine died after having a tumour grow right on his brain stem. He went from having headaches (but no real clue why he was feeling rough) over a couple of weeks, to not being able to wake up one day. It was then they found his tumour and he died a week later never having regained consciousness. It was tiny, apparently, but just in the wrong place. I also have a friend (a lady who was looking forward to her 40th) who has been diagnosed with an aggressive brain tumour. Her eyesight is failing and she's trying to get to grips with the thought of leaving behind 3 children.

as appropriate to all.

Can I join you? My DM has recently been told she has advanced bowel cancer which has spread to lungs, lymph nodes and other places. It can't be cured although she is about to embark on some chemo to give her more time. I don't live close by and that in itself is stressful and makes me feel so guilty/useless. I have no idea how long she has and I want to be able to plan time off work visiting etc. I don't know if she has even asked what her prognosis is or if she just doesn't want to say.

So far it seems as if before every appointment we had hope but that each time the outcome was the worst thing possible. Was it a hernia? Was it contained? Had it only spread locally? Was it at a cureable stage? The answer was always no.

Is it normal to feel ordinary but numb one minute and then be sort of advance grieving the next even though she's still here?

Sorry to go on about my own situation. I'm truly sorry for all of those who are in the same hideous boat - I am steadily reading the thread and can see I am far from alone.

Hello Wax and everyone. I post a bit on the I'm not OK thread about my DH and there's now a group of us in the same grim situation.

Your question about 'feel ordinary .... etc' is definitely normal. (Trust me, I'm a retired counsellor - lol! I am actually.) It's called oscillation. Also works that everything goes OK then you get home, close the door, and collapse in a sobbing heap. There is no right or wrong in grieving.

All on this thread and all the other threads, please look after yourselves carefully. Make sure you make time for yourself. I go for a walk on the promenade as often as I can and scream at seagulls. Not been locked up yet and very therapeutic.

Thanks for replying to me selena and I am so very sorry about your DH.

I've been going for lots of long walks into the countryside often just walking along crying or talking to myself - luckily I've not bumped into anyone else while I'm doing this! It does really help though.

There are so many brave and positive people on here, including you, that I feel a bit ashamed at crumbling at first base. I am going to try really hard to celebrate each day that DM is still here and stop dwelling on the future.

Nothing to be ashamed about, Wax, in fact it's healthy. Crumble, pick self up, crumble, pick - you get the idea.

It's all part of life's rich tapestry, some person said. Well maybe, but life's a sod too sometimes. That's how it is!

Hello all, is it ok if I join this thread?
to everyone else who have needed to join.
10 months ago my ddad was diagnosed with lung cancer. As the tumour was incorporating some major blood vessels and was right by his heart, it was deemed inoperable. He was given 4 rounds of chemo therapy and 20 rounds of radio therapy which finished in November. During his treatments he had a few bleeds from the tumour site, one of which nearly killed him outright. The radio therapy caused severe pain lasting weeks after his treatment finished. After Christmas he was a new man. He seemed even better than he had been previous to his diagnosis, and was able to walk around more and get out and socialise. However, about 3 weeks ago he started having some dull aches on his left side chest and lower back, and was then rushed into hospital after urinating blood. We've since learned that the cancer is now in both lungs and has spread to the left kidney. We have an appointment with his oncologist next month but We already know that any treatment now is purely to extend his life and treat the pain, not to cure the cancer. We don't know how long we have left.
There is me and my sister and my dad. That is the only family I have. My dad raised me after my mum abandoned us as children, and we are extremely close. He is only 63 it's so unfair. I honestly don't know what I am going to do without him.

Crimson - I've just caught up with your post. I'm so sorry. We had (more) bad news about DH yesterday, but I'm now being proactive, using every bit of networking I can to get as much help available.

My latest info is that there is a Palliative Health Care team who will come in and assess what may or may not be needed. You access them via your GP or Oncologist and once they're on board they can move mountains. Apparently you have to ask - so if you don't know how can you?

It's the waiting between appointments that's the worst I find, plus the lack of information as though you're supposed to magically know.

And no, it's not fair. Nature can be and is cruel.

crimson so very sorry to hear about your Dad. We don't know how long my Mum has left either and I'm not sure if that's a good or a bad thing. I have heard some very positive stories about people living far longer than expected and having a decent quality of life in that time though. That is a hope I am personally clinging to.
selena sorry you have had more bad news and I know what you mean about the agony of waiting for appointments and about finding your way through the maze of information at a time when you're least equipped to do so. I have made an appointment at my own GP today to try a get some guidance on the road ahead as I want to do what's best for my Mum & don't really know what that is.
to all on this thread it is so so hard.

DH went for blood test today, after GP appointment yesterday. My goodness, but the GP has (bless him) got balls rolling. Apparently Wax they can do a Plan, you can be given a number, so if you have to contact someone out of hours you give the number and they can access all the relevant info.

The receptionist asked the nurse taking the blood to check BP, respiratory rate, etc and told us they would send info to us. Watch this space!

Hi, I'm relieved to find this thread. My Dad is currently very unwell with terminal brain cancer. I'm pregnant and really struggling with my emotions at the moment. I'm likely to face a bereavement at a similar time to new baby. My hormones are not helping me at the moment! My Dad lives in Holland (I live in UK), so I don't get to see him that often, especially as I have a 2 year old. He has now lost speech altogether (as well as most mobility), but he still has intellectual capacity. Feeling so sad about it -- the last time I saw him was, I now realise, the last time we were able to have a conversation together. I'm going to visit him this weekend with my sister. I'm quite scared about how hard it's going to be with him not being able to talk. If anyone is aware of good sources for support (for me) I'd be grateful to know. For now, I think it helps to be able to share on here. x

Also want to say to everyone else here how sorry I am for your pain - I can see there are a lot of really tough situations people are facing on here. xx

My beloved mum in law died this evening.

I'm so sorry, Paws. to you and your family.

Thanks Selena

Thank you for your kind replies. My dad and I had a lovely day together on Wednesday. We had a very slow stroll to the local shop and the sun was shining through the trees, me and my dad stopped for a full 10 min looking up and listening to a blackbird singing on one of the top branches. Ddad said he is going to try and spend his time noticing the little things that everyone takes for granted. I felt at peace for the first time in weeks.