Not knowing what to expect - Mesothelioma the final stages

Hi Helyn, I know it is hell watching your dad like this. I did the same last year. from my experience and i can't say it will be the same for your dad, but my dad was poorly quite a few times being sick and dehydrated and not able to eat and sleeping for hours on end and he rallied round. So it is very hard to say. but most people would say that yes the pain does become stronger and the drs have to increase the pain killers and give them more regularly and give tables or injections for agitation to calm them down and then they find it impossible to swallow the tablets or food and the drs suggest that a syringe driver is used to administer the pain drugs etc and then usually this makes them sleep and sleep and they go into a very deep sleep that they don't wake up from. Thankfully most people have said that their loved ones have fallen a sleep and looked not to be in pain and slip away quietly I can't say it happens in all cases . but alot do. So just spend as much time holding his hand and talking to him even if he is sleeping , they say hearing is the last thing to go . It is heart breaking to watch and live with after wards but I am sure you will find the inner strength to be there for your dad.
Sending you a hug from One daughter to another

xxxxxhugsxxxx
Clare

Hi Helyn and Angie,

Like Clare, I lost my dad to this last year.

I have to be careful not to give you false hope, but I think, with hindsight, I sometimes feared the end was closer than it really was, because I didn't understand quite how bad things could get.

Yes, the pain does tend to get worse, but I don't think that on its own was the main or only indication.

I think strength and activity levels were the biggest clue. When he was first diagnosed, my dad could still walk three miles, or swim 40 lengths. Near the end, he could barely speak, stand, or hold a cup of tea, so the contrast was dramatic, but all of this happened quite gradually.

I do not remember him being sick, except from the chemo. I don't think he was sick from the mesothelioma itself. But I do remember he found it increasingly difficult to swallow, and he got more-and-more picky about his food, and the list of potential reasons for rejecting it got longer: it might be too wet, too dry, too hot, or too cold. We just had to keep trying with different things, hoping to chance on one he might be able to manage.

I can't really remember all the drugs he was on, or the doses - there were so many. He did have it all typed out somewhere, but I expect Mum has thrown it away as it was too distressing. It's a shame: I should have kept it, as it might have been some reassurance for others that they are not yet on the highest dose. There is not really an upper limit when it comes to morphine. Dad was on doses that would kill, if taken by anyone who wasn't used to it, but as long as they are only increased gradually, the body will adjust to it. He was on methadone and several other things as well.

I'm sorry, this really isn't a very nice thing to talk about is it, but I do appreciate your frankness in asking, so I've tried to answer frankly as well.

I hope your dad may have some time still to go yet, but of course, I can't guarantee that. Hope for the best, but prepare for the worst, is my motto. One thing I would say, if you're not afraid to, is do ask the staff who are looking after him. I was very lucky that the hospice staff knew, and could tell the signs: they told my mum when she needed to call me. Of course, I went immediately. I got there on the Tuesday night, and he was relatively lucid - he definitely knew me, and it was the last "proper" conversation I had with him. The next day, he was getting agitated, and drifting in and out of consciousness. He was aware of us, but there weren't really any meaningful exchanges any more. He just kept wanting to pull all his wires out and get out of bed - which of course he couldn't, but he didn't really understand that, I don't think. He eventually died on the Friday morning, so the staff had been very accurate in what they said, and made sure the family was summoned at the right time, for which I was grateful.

I'm sorry anyone else is having to go through this. Nine months on, I am still here to tell the story, so life does continue on, for the rest of us. You can't imagine how it will, at the time, but it has to and it does. When the time comes, you will be stronger than you think.

Best wishes,

Candice

Hi Countrygirlblues and Candice, thanks for taking the time to reply it really does help.As Angie says its hard not knowing the timelines i guess because you want to know how much you can enjoy now and when to prepare for the worst. Luckily dad is still walking twice a day, eating albeit small amounts, he drinks plenty fluids, is very constipated and is always sick just before he relieves his bowels which is strange but could be the amount of toxins building up. He is cold but i put his down to the meds or maybe the meso. I feel for my sister its so difficult for her being all that way. I have read a sign of deteriation is not eating and drinking, sleeping more, changes in breathing. For now we are so lucky and our daily lifes are good because dad is good. However, we know all that could change at a click of a finger. He was diagnosed in April but started getting poorly in the Feb. We have read mixed reports on timelines and again yes everyone is different for some its months and other a few years. Im sorry to both of you for your losses myheart goes out to you. If you can offer any other advice it is much appreciated. Helyn xx

Hi again Helyn,

Yes, my dad, like yours, did have symptoms a couple of months (at least) before he was diagnosed. He thought he had pulled a muscle gardening, or maybe that he had a chest infection. But I think, at the back of his mind, he knew it might be something more serious, because he knew he had breathed asbestos.

The course of the disease was described to me once as like a staircase. Unfortunately, it is always down, but only a step at a time. There are some landings on the staircase, where things may seem relatively steady for a time. Or even appear to go up a little bit, before carrying on down.

As you say, everyone's different, but I think, looking back, the first year for us was not too bad. There was no getting away from it Dad was ill, but he still managed to see and do things, and maintain a fairly good quality of life: we had a couple of foreign holidays. He got tired more easily, of course, and didn't have the appetite or stamina he used to, but most days he was coping, more-or-less. Deterioration does seem to speed up more, as time progresses, but is never "sudden" - or wasn't for us.

The constipation is almost certainly caused by the morphine: it is a known side-effect. Dad had a laxative called Movicol to help with this. I won't say it was ever 100% effective, as he used to find it difficult to get the dose right. Not enough, and there would be no effect, but just a fraction too much, and he'd suddenly have diarrhoea. I suppose it was difficult too because his morphine dose kept changing, so the amount of Movicol needed to compensate kept changing as well. Certainly worth asking the doctor, though, as your dad should be getting something to ease the constipation (don't go out and buy stuff yourself, when you can get it all on the NHS).

Hope this helps. I've accepted your friend request by the way, so you can contact me privately if there's anything you don't want to ask on open forum.

Candice

HI Candice thanks for that hun and im sorry you went through the nightmare of losing your dad and yes you are right we have to continue. HOw long did your dad have from diagnosis? Did he have chemo? My dad has refused chemo. He is still active although looks unsteady on his feet, he walks to the pape shop (20 min round trip) and then has been taking himself on a 10 min walk in the afternoons. He is not eating that great. His hands are cold as is his face (he has always been a warm person). He gets very constipatedbut has tablets to help with tihs. He takes liquid morph when he needs it. Mum and dad are dealing with it on the basis of someone living 20 years with it so that is their hope. I have to accept the reality of it and would say ive seen more stories on epople living under 12 months than those living longer. Everyone is different that is for sure so thats what makes this even more hard to wrk out. Timelines are our biggest issue when do u do the good things before its too late. If mum and dad think they got years they may never get round to doing wht they want because if it isnt years and months. Dad sweats quite a bit and his skin is yellowish. If you can think of any signs to watch for detrioation thatwould be great. The specialists all keep saying one day at a time adn wont say anything more than that! AGain im so sorry for your loss, ur dad will be watching and be proud that u are helping other people xx

Hi again Helyn,

Hope you and your dad have had a reasonable day today?

All I can say about when to do the good things is NOW. Don't wait!

It's true that statistics are only an indication: they can't predict the future for individuals, and there will be exceptions - at both ends of the spectrum. I guess 20 years is not impossible, but I have to say it's very much the exception, not the rule. My dad lived about 19 months from when he was first diagnosed, and I suppose nearly 2 years from when he first began getting symptoms, although it's difficult to tell exactly, because I don't know how long he might have had symptoms before, without suspecting anything.

Looking back, I think he complained of shoulder pain quite a lot, which might have been related, but he was such an active man that it was easy to write it off as he'd just been overdoing things a bit, or spending too much time hunched over the computer.

If your dad is still getting out and about by himself, I think and hope nothing is going to happen just yet. I remember being in the situation you're in, and I wish somebody had told me: "Look, it's NOT like a heart-attack". It's relentless, but it isn't sudden. You just notice they struggle more and more to do ordinary things. I used to be scared if Dad fell asleep, in case that was it, but it's not really like that. I think the flight of stairs description is a good one: it's like going down a long flight of stairs, and you can tell when you're getting near the bottom, but it's not like falling off a cliff.

I don't know about the feeling cold, because Dad mostly used to have the opposite problem, of feeling hot all the time! He needed doors and windows open everywhere, and we were all putting on three jumpers to compensate. But it could be two sides of the same coin, as mesothelioma seems to muck up the body's thermostat somehow.

The bad skin colour is pretty typical. It may be partly the drugs, as they can impair liver or kidney function. It may also be because your dad's reduced lung function means he can't get as much oxygen to the blood. Oxygen is what gives it the bright red colour, so somebody with a serious lung condition normally won't look as pink.

Dad did have the chemo. It did achieve some success at first (shrank the tumour), but that was only shortlived, and the treatment made him so dreadfully ill that I'm not sure it was worth it. I don't blame your dad at all for deciding he won't have it. In our case, the best we can say is well, at least we tried it, and maybe it will help the research, but I don't think it did much good really.

I do appreciate your kind words, and yes, I would love to think Dad is looking down and watching. Unfortunately, I've never really sensed that, but I do know he wouldn't have hesitated to share any information or experience that might help somebody. He never spoke to other sufferers personally - I think he was too scared of what he might see - but he knew I was in touch with other families who've been affected, and he appreciated that, I think. I know he didn't mind me talking about it.

Anyway, it's getting late, and I have rambled on enough.

Hope you get a peaceful night, and a decent day tomorrow.

Candice

Hi Becky
Thank you so much for posting because I didn't realises that mesothelioma can cause anaemia! I know that the chemo can make you anaemic but I didn't realise the actual disease itself could do that so thanks for that information.

Hi Helyn
How's things?

Hi Candice
Noticed your postings from time to time. All the best to you.

Take care one and all xx

Hi Stardust, Bigbird and Candice

Thanks for all your advice and best wishes, this site really does have some wonderful people who are going or have been through something awful.

Dad is doing really good at the moment he is taking walks twice daily now this could be steriods doing this or just his sheer positivity. My dad amazes me I would be a jittery wreck but not my dad he keeps going and isnt phased by this at all. We dont cry in front of him he doesnt like it - never seen him cry yet! We even had a family holiday in scotland which wsa filmed by my brother in law who put some wonderful songs to the video ( icant bring myself to watch it just yet) but everyone who has watched has cried their eyes out but not my dad. Im struggling inside to cope, im tired all the time, feel moody, feel like a light inside has gone out and today for the first time really did not want to go to work but i did and i feel much better for doing so.

Dad is having problem with bowel movements tomorrow it will be 7days with no movement and he is on quite a strong laxative especially for terminal ill people but that doesnt seem to be doing anything. Worried in case of blockage?

Bigbird what signs u think I need to look out for? What dosage of morphine was your dad on? Maybe I will email you privately if you are ok to answer me.

Hope you all have a lovely evening xxxx