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. :(

Ddad was put on steroids to help with his energy and appetite. When he went to ask for another prescription, he was set up with a standard, reducing dose. He queried it, explaining how helpful he found it. They reinstated the full dose and he's on them permanently. It's def been longer than 6 weeks (more like 3 months or so) and he's - when not suffering from infections - still eating well and feeling quite well in himself.

That is hugely helpful, thank you Charley. And reassuring.

hi everyone.Dad has had a bad week sadly.He popped round on my b day with flowers and i thought he looked frail and bit yellow.His sis came to see him from cornwall and he felt too unwell to go out for food.I was busy at my new job so a few days passed where i didnt contact them.he peaked a temp tue eve and his hospice nurse rushed wee sample through and got him on antibiotics asap.i saw him weds he looked white and at deaths door tbh.I rang mum who said he was vomiting in the night.I rang the hospice nurse myself and she said she would drop in on them.Did vital signs tests and diabetic ones and was arranging some haliperidol anti sickness injection.The gp decided as his temp had gone back down it wasnt needed.Mum says he was "ok" last night.
I warned my new employers who couldnt have been nicer tbh. I am trying to catch up on all your journeys and hope you can all have as good a week as poss.

Hi everyone (again), I'm sorry I dropped off for ages. I will try and catch up on everyone's updates over the weekend. for those whose situations are unfortunately declining.
The good news from me - now 7 months pregnant and dad still doing ok so there is now a fighting chance that he will get to spend some time with his grandson.
The not so great news - cell counts in his bloods keep heading south which is a pretty strong indicator that the chemo is doing nothing. He has had a couple of cycles delayed because his blood results are so bad but 3rd cycle out of 6 was done yesterday. He's starting to show the effects of it, the permatan look is back and he's losing weight. He's started going to a day hospice which he seems to like. I thought he wouldn't go in for that sort of thing so I'm pleasantly surprised. Burial plot is also now reserved and he has made sure that his will is up to date and done.

It still feels weird to be writing this. Sorry for the 'me' post but will catch up over the weekend and post again.

Hi all.

Whatis... it's so hard watching the ups and downs. I hope that the gp is right and your DDad is having a better week this week.

Nousername... that's good nuws that your dad is still ok, but a worry about the other symptoms. My Ddad hated the thought of going in for day respite into the hospice and it took several rounds of him being poorly for them to convince him. Now it's the highlight of his week some weeks - especially the food!

He's been having stomach problems which were getting him down - he has enough indignity at the moment from where his tumour is sited and the discomfort it is giving him (he's actually sitting on his tumour if he tries to sit up straight and it's too painful to do that so he reclines most of the time for comfort) and he's terrified of becoming incontinent etc.

I was worried that the disease, which is already in his pelvic bones - or was before some radiotherapy - was progressing and that a lump was causing his problems. Happily, we've had some good news. He saw his oncology consultant who said firstly that Dad was looking so much better than he ever expected him to so long after giving him his prognosis and that secondly, he didn't like the sound of the stomach issues so sent him for an xray.

He isn't severely constipated as one nurse suggested, which is good and they also haven't mentioned finding any sign of the disease having progressed either.

He has a bit of a plan of what to do if a or b symptom rears its head and he's feeling happier that he knows what's going on and how to deal with it.

It was his birthday last week and at one point I didn't think we'd see it, so it's a good thing that he's still here and still doing (mostly) ok.

and all round. xx

Hi all, sorry I haven't checking in on here for ages.

Whatis sorry your Dad has been having a bad week, but please your new employers seem to be much better than your last ones hope your new job is going well.

Nouser that is nice that your dad is going to a day hospice, wonder if there is anything like that by my parents although not sure if my Dad would ever go, hope the remainder of your pregnancy goes well and that your dad gets to see his new Grandson.

For my Dad the bad days are more frequent but making the most of his good days. The worst thing is his temper rages, I suspect it is down to the morphine my Mum has said he is worse when he is coming up to another dose. Eating is very minimal but he is still always able to manage a pudding his sweet tooth still alive and kicking :) On a happier, if bittersweet, note it is looking likely that we will get to spend Christmas with him, back in the summer it was a bit more unlikely, may not be a typical Christmas but will be still be special if in a different way.

Charley, pleased that you have had some good news about your Dad and I hope he enjoyed his birthday x

He did. It was a lovely family meal that he said had been 'Smashing' when time came to leave.

I've done a bit of googling (terrible habit) about the high calcium levels and it's not a Good Thing to Have so hopefully they stay down with him drinking lots. He has had cancer show up in his bones and this can be the cause of the cancer. It can have some pretty nasty symptoms if it carries on, so it's good that he goes to the hospice regularly and they keep an eye on him each week.

Groove, I have also had the feeling that it is more likely that he will be with us still at Christmas. My worry is how comfortable he will be.

And we always have a panto outing which he so looks forward to in early Jan. Tickets were bought before he got his prognosis. The theatre have very helpfully reserved a wheelchair space and a seat next to it in case we need it.

So I'm now stressing about the practicalities of
a)whether he will be comfortable enough to go at all or whether he will be upset if he can't go.

and b) if he is happy to go come that time, whether I need to cancel that wheelchair space if he wants/is able to sit in a normal seat (unlikely) or swap one of the normal seats that I have paid for with the wheelchair +1 space so I don't end up paying for the 2 extra spaces they are kindly holding for us.

It really shouldn't be something that is on my mind, because in the grand scheme of things, it's very petty. But the trip brings my Dad happiness. He loves going. I have my fingers crossed that he can but don't know what's best yet.

Sigh.

Why do the 'lows' come so quickly after the 'highs'?

Dad's stomach issues continued. To the point of an ambulance being called out yesterday because he was in pain and sleeping lots. A blockage somewhere is suspected and he's now in the hospital. There will be a ct of his stomach etc taken today.

I have my fingers crossed that whatever they find is something they can act on as I have a horrible memory of my dnan being in hospital for a blockage/constipation cause (unknown to me back then) by bowel cancer. By the time she went to hospital, it was too late and she was too weak to operate on and she passed away.

Oops. That was my Hallowe'en name, there.

Oh charleydavidson so sorry about your dfs bad turn after such a lovely meal out.I will keep everything crossed for you.My DF had a funny turn last week.He went out to do some light gardening feeling unwell he collapsed onto the wheelie bins and called for help,Mum indoors didnt hear and the next thing he was vomiting in the front garden before she could get to the door to let him in,Hospice nurse suspects low blood pressure and he has blood tests this week.It has occurred to me that his type of cancer can easily spread to the brain too,Df hasnt been anywhere since feeling too frail and with leg pains,He has lost 2 stones and hardly eats much.Mum is trying to get him a wheelcair .:(

Sorry to hear that from both of you charley and whatis. You get accustomed to a set of circumstances and bang, something changes. I know I'm on constant high alert.

My dad is fairly stable at the moment but in between doing a few nice things a week he is increasingly exhausted. The itch (nearly all over) he's had for a long time now drives him mad. It is a known symptom of liver cancer but he had it long before his diagnosis and the rest of his symptoms.

Nemno im pleased things arent too bad for your df.I have read about the itching thing and it must be hard to live with.Love to anyone else on here too trying to catch up on posts and do my new job and fetch things for my parents (minus a car that was written off) I am thinking of you all even if im time poor. x

That sounds so worrying Whatis. It's scary how quickly they can become frail. Ddad was doing ok until the cancer got into his pelvis and it broke. By the time he was allowed back on his feet he had no strength left and he's been really weak on his feet ever since. A wheelchair helps, as does a walker, but it was a fight to get ddad to accept that he needed one.

Nemno, that must be a frustrating symptom for your ddad to have to put up with. And a constant reminder that all is not well.

Dad is on oxygen, is classified as 'poorly' by the ward and has had suppositories to try and get things moving but it hasn't worked. We are now waiting til tomorrow to hear from the doctor whether there's anything else they are wanting to try (fingers crossed still that there is), but surgery is apparently the last option they will consider, especially since he's unwell and weak. He has a pain relief pump, which shows the amount of pain he must be in as he's never been given one of those before.

If he never came home from this I wouldn't be surprised. He seems poorlier than he's ever been so far. :(

We are back to the horrible grind of hospital visits, taking other family members with us because they don't drive and won't pay for taxis or bother to learn to drive in the last year since this all started due to whatever the excuse of the week is . It's ok while we are on half term, but when I go back to work next week it will be more stressful.

When he's poorly it's stressful seeing him like that.
When he's starting to feel better then he is embarrassed about needing the support and care.
And when he's nearly ready to go home then he's frustrated and grumpy about being stuck there.

But it's just what we have to do, so we do it.

(And cry in private afterwards.)

(That was a bit longer and self-pitying than I intended it to be, sorry).

Oh Charley, I am so sorry to hear that your Dad has had such a turn for the worse I hope that you have some better news today xx

Thanks, groove. (Always makes me think of the Hoobs, that I used to watch with now 14yo dd1 when I see your name).

They've found an infection and are treating it. They're trying an enema now as the suppositories failed. He's a bit out of it with the infection, which will probably save him from the worst of the embarrassment that he would otherwise feel. Still waiting on the results of the CT scans.

I know that a blockage could be the result of a few different reasons - but am not googling as have already scared myself silly reading about high calcium and its link to cancer - but I still think they will come back and tell us that the disease has progressed there.

Others have visited today and I was to go in the hospital in the evening, but we are staying away so he can rest and have his treatment undisturbed by visitors. I will visit tomorrow and hope that he will be showing some signs of improvement by then.

I'm grateful for the support that being able to unload on this thread allows.

Today is officially a Bad Day.

Dad's in hospital still. The doctors took us to the relative's room to talk to us. Apparently, they aren't 100% sure whether he's got a blockage, but there's definitely tissue showing up that could be pressing on his gut and causing it to narrow/block. They weren't clear as to whether it was the primary tumour being very large and pressing on his gut or whether it could be a secondary.

And he has a massive infection that is also in his bloodstream. Very serious.

The upshot is he is quite confused because of the infection and because he has high calcium in his bones. He's in pain because of his infection, his tumour and his stomach being blocked. He is completely nil by mouth, so he is pleading for a drink and it's hard to tell him no, he can't have one.

It's a bit like torture, visiting him when he's in such a poor state, and leaving him knowing that he's so poorly.

They were clear that there's no chance of an op to sort the blockage and that there might be an improvement with the anti biotics (and said that there had been a slight improvement since yesterday in the infection, but not the blockage) but did also start to ask about DNR and said that he might pull through it, but they might also have to start thinking about just making him as comfortable as possible.

A very sad day as things have moved on again. His cancer is affecting him in more serious ways and he's really poorly. :(

Oh Charley I am so sorry to read this. It must be so frightening to hear the word blockage without the follow up as to what they're going to do to fix it.

I know that I know that cancer will kill my dad but the actual way that it might do that is a nasty mystery. And then again this particular thing might not be it after all, just another unwelcome progression. And on we go. . .

Take care all of you

Hope everyone is ok, how is your Dad Charley?

Things have taken a turn for the worse here as well, having spoken to my Mum today.

The district nurses who do my Dads chest drains have expressed concern about how much pain he is during the procedure, yesterday the nurse could not carry on with the drain as he was in too much pain. They did want to take him straight into hospital but my Dad refused, apparently burst into tears at the thought He is going in for a review on Monday so will see what happens then.

The district nurse has prepared my Mum for the worse, weeks not months, but I am hoping he can bounce back a bit. They did say this before, when they were concerned about a rapid decline but he did manage to rally back from that. It is just bloody scary how you can go from thinking things are fairly good considering and then this.

Take care all

That sounds hard, groove. I hope they have some positive news on Monday. My dad feared going into hospital and started today's visit by stating 'I'm getting out of here'. Is it only pain that is making them concerned? It must be hard for them to be talking as though things have progressed without any other clear symptoms or signs.

There were some improvements today. But only tiny ones.

He was less distressed today.
The macmillan nurse has made recommendations - twice - that Dad be allowed to have sips of water as he is just too distressed to be denied it. He was asking for lemon squash today, not tea and we found a bottle of lemon flavoured still water in the fridge in the hospital shop and let him have just a few sips of it. It really helped him feel less neglected and seem less distressed.

He's not being allowed to eat or drink 'to give his gut a chance to recover' in the words of the macmillan nurse. But basically, nothing in there is going anywhere because of the blockage (which is the disease progressing) so he just can't put anything more into his system. If he did eat or drink properly it might start pressing on his lungs. I dread to think just how large his tumour is now. It was described as 'sizeable' back in Jan and the chemo didn't have any effect on it and it's been growing and growing.

He is still confused, which could be down to the infection, or could be down to high calcium, or some other reason we don't know about yet, but he was a little clearer. Just a tiny bit.

He's also in a lot of severe pain with his stomach, which growls and rumbles so loudly you'd think there was a thunderstorm outside the window. He has a push button pain pump thing, but it's hard to press and he's not with it enough to know to press it for pain relief.

So they are talking about fitting him with a syringe driver, which I have read is part of end-of-life care which makes things all seem very real.

I took a photo of him in his hospital bed today as I needed to. He's not looking desperately ill, so it's not a sad photo, but it could be the last photo I have of him, so I did.

all. And thanks for reading my ever so long messages. xx

Oh heck, I really must change my name back before posting!

Oh charleydavidson my heart goes out to you and the awful situation you are in.I am glad you took that photo.Groovejet im thinking of you too.What heartbreaking posts.I popped on here to update about my dad now it seems trite.
He only left the house for blood tests the last 10 days.Dad was always doing things and would put most younger people to shame dashing around.I dropped in sat before work and he admitted he had bad pelvic and leg pain too bad to walk to town.He wants to get a blue badge but i dont think he should drive,:( Mum is trying to get a wheelchair like she had when her cancer was bad so at least he can get out of the house.the gradual loss of things through cancer is so cruel.I will check back later on here to see how things are going for you both.Sending you strength to get through today x

Sending love to you and your family Charley xx

Whatis I hope your Mum can sort out a wheelchair for your Dad so he can get out, it may still be worth getting blue badge for him if anyone else drives him, my Mum has one for my Dad

The pain is the main reason that have concerned my dads nurses, the drains are supposed to provide some sort of relief for him which isn't happening. He has been on a rapid decline over the past 2 weeks. I don't know what the next step will be they are not feeling comfortable doing the drains but my Dad does not want to be admitted. We always knew when he was diagnosed that it would be months but nothing really prepares you.

Thanks all.

Sorry to here of the pain that your Dads are in whatis and groove. I hate seeing my Dad in pain and knowing there's very little you can do about it.

Can macmillan/district nurses etc help get hold of a wheelchair? They sorted Dad out with a commode, a stool for in the kitchen etc as well as his hospital bed and a hospital table.

No change here today. Which is good and bad. I've done a bit of reading and if the rest they are giving to his GI system by not eating or drinking doesn't help the blockage, then we are most likely talking weeks, not months. I don't want to wish his time away, but I don't want him to suffer for any time either.

A horrible place to be.

Update on my Dad. He is back home the hospital have suggested that the nurses try doing his drains once a week, given the pain and how agitated he is about them they think it is worth seeing if managing once a week is a preferable option.

He has been given a lot more medication including sedatives, which is both good and worrying.

Will be reviewed again in 2 weeks so just got to see if these changes help pick him up a bit.

Hope you are ok Charley and everyone else