Bad news today, feeling sick and teary.

[BonApp]

My dad might be ill. I don't want to go into details but some further tests will reveal things properly in the coming weeks.

He was in tears when he told me today. I live abroad so we were chatting over Skype. I am going home in a few weeks thankfully so don't need to rush back, but I do feel bad for living elsewhere. And in fact I posted recently about this being one of my fears (parents health declining whilst I am in a different country). My sibling lives abroad too, much further than me.

My head is racing with thoughts of the short/medium/long-term. I know it's futile to speculate or worry until we know what we're dealing with but I've felt sick all day.

This is my dad. My hero. He's driven me up the wall as he's got older but I love him so much. We were supposed to be planning his 70th birthday celebrations but now nothing looks certain.

I knew the time would come when my parents would become elderly or experience poor-health but I'm not ready yet. And my dad isn't either.

Not sure why I'm posting really.

Dad ended up having a bad day on Saturday and was crying a lot in the morning. He slept badly for a couple of nights in a row and I think he just felt really fed up with being in pain and thinking about what is to come. He was saying he couldn't stop thinking about saying goodbye to the kids (ie my children and his grandchildren) at my brother's wedding and how that could be the last time he'll ever see them and that he wasn't sure if he'd make it until Christmas.

Personally I think he will still be here. And whilst I had all the visits home planned in, I guess I'd forgotten that there would be a goodbye each time and that it will get harder and harder. It's his 70th birthday in January so it would be good if he can make that. Though I also don't want him to be in pain etc for a long time. So many conflicting emotions.

He's started on some new medicine and might be put forward for a trial but tonight I just feel so bloody sad about it all. My poor old dad with all these problems - be it pain, or side-effects, or being sad/scared/worried himself.

I just wish it would all go away. I don't want him to go anywhere.

Oh bon it's heartbreaking.
Dad had spoken to the vicar a few days before he died and the vicar told us that dad wasn't afraid of dying but didn't want to leave us behind
When dad was diagnosed he was so worried about mum being on her own and kept wanting reassurance from me that she would be OK! So I promised him I would look after her... .
That's good that they are talking about a trial for your dad. Dad's consultant spoke of a trial at the Royal Marsden. What is the drug they have given your dad? I hope it gives your dad some positivity

Just checking in. Dad seems ok, quite spritely over Skype during the week and much better now he's not messing around with his drugs, though he's still not convinced on their effectiveness for the nerve pain (he's on gabapentin and back on co-codamol instead of morphine which he prefers and his appetite seems to be back). However, he's been assigned a palliative nurse now who seems to be a good support and will be checking in on him frequently to make sure he's got what he needs.

No news on the trial yet, they literally know nothing about it. I don't know how I feel about it really. It's nice to help with research and maybe it will make a difference, but there's not much "hope" to be had from anything really...

However, my stepmum has had a fall and broken a bone. She's ok and they are laughing about it, but I know they will both be worrying about something like that happening once she's on her own.

Hope you've all managed to have as good a weekend as possible.

I still think of you all lots and wishing you well through the power on MN.

bonapp how awful for your stepmum.
Good that your dad feels 'ok' my dad hated morphine. It made him feel much worse with not a lot of benefit. It's good that your dad has an appetite, that really helps.
Also dad's pc nurse was brilliant, she couldn't do enough. In his last few weeks I phoned her a lot and she always had a solution. She sent me a lovely message when dad died.
I'm not sure about trials, I know one of my neighbours is on a trial in a London hospital and goes there by coach quite frequently. He says it's very tiring but he's willing to try anything
I'm feeling a bit down these last few days, work had been a struggle as we have new things to learn and it seems like as we go into another new month I miss dad more.
⚘⚘to all.

Hi Jools, honestly the passing of time is the worst thing for me at the moment. I've always been someone who's looking for the next thing/phase/project/plan and now I can't bear to think forward. A good lesson on focusing on the current day but every time someone mentions January or The New Year or Next Spring I feel a sense of despair.

I don't know if dad has heard anymore re the trial. I think he would just be doing it for something vaguely productive rather than any hope of it working. I dunno.

The pc nurse seems to be a huge reassurance for them both. Just someone to call, ask, talk to. So that they feel supported.

How is your mum doing jools? Take it easy at work, do you have people there you can talk to? Sending love to you.

Thanks bonapp
Work have been brilliant actually. It's just that we have a new IT system that I missed the training on and I'm too old for all that! I'm not really in the right frame of mind to learn at the moment either!
Mum is doing well really. I'm proud of her. I'm sure she has some dark days but she's being really brave. She has a photo of dad that she talks too which is nice.
We are still having support from the mesothelioma charity group.
Take each day as it comes ⚘⚘

Glad work is supportive for you and I'm sure you'll get to grips with the new system soon. Difficult when it's not a priority and your head and heart are clogged with other stuff. Hang in there...

I ended up telling my boss' boss today during a random chat by the coffee machine. He was very nice about it all, but now I'm questioning whether it was the right thing and now whether he'll think I'm not focused enough on work. Gah. I'm probably overthinking it tbh (awful habit of mine).

Glad to hear your mum is doing ok too. I'm sure some days will be easier than others. That's so cute that she's talking to the photo of your dad. Bless her.

We haven't sought any additional support. I think I'm leaving that to dad and maybe we'll see if it's needed "after".

I have been thinking about writing a letter to my dad, to talk through all the lovely memories I have of him and me and telling him how much he means to me. I feel strangely grateful to have this opportunity - I don't think I would've done this if he wasn't ill.

The each day approach is a good one. Dreading buying the kids advent calendars.

bonapp I think the letter is a lovely idea. I felt privileged to be with my dad in his last hours and be able to tell him I loved him and what an amazing dad he'd been. I hope he heard me.
I think it can only be a good thing that you told your boss. People walk around with no clue to what is going on in other people's lives. I found out yesterday that a colleague has cancer. I had no idea!
My mum insisted on buying advent calendars for the grandchildren today, like her and dad did every year (youngest is 18!!)
I know I've said it before but I'm dreading xmas

Back home.

Dad's good. Which is lovely. But it's still so hard for everyone. We're so so grateful for the time, but that doesn't make it any easier.

Sometimes I wonder if we're making a big old fuss when I think about others who have had to go through this (or worse). But it feels so monumental - how is this 'just part of life'?

All of the people who are hurting, geez, so many.

bonapp you are not making a big old fuss at all! It's your dad ffs and it's bloody tough!! It's great that he's feeling OK at the moment. Just live in that moment and try not to think ahead too much. In some ways it's an advantage that you are aware of his illness. We knew dad was ill but we thought he had a few years left. I had no clue that last year was his last Xmas. But it's also very hard for you and your dad to be aware that this may be his last one, that's so so hard to take in.I'm not sure my dad could have coped with knowing that
There are so so many people going through this shit but it doesn't make your suffering any easier.
A friend found out this week that her dad has lung cancer, they also suspect mesothelioma although not confirmed yet and my dd''s friends mum has just died from liver cancer, aged 52!
One day, in years to come cancer will just be an inconvenience like the common cold and nobody will die from it. Sadly too late for us but one day hopefully a cure will be found for this bastard disease.
Sorry I'm rambling......hugs to all⚘

jools you always say such lovely things. Thank you.

It is hard knowing what is to come. Dad has struggled emotionally recently, but physically there is still no change when really we all thought he'd have detoriated by now. Clearly it's great that he hasn't but the uncertainty of everything is tough.

I still can't get over how many people have to do this. I spoke to 3 friends of friends who'd lost parents in the last couple of years and whilst it's reassuring that they are doing ok, you can see the hurt in their eyes and I am scared of that hurt never really going and don't want it in the first place.

My brother's wedding is coming up. It will be lovely, I am really looking forward to it. But the reasons why it's now are so bittersweet and everyone there will know it. It's going to be an emotional day I think.

jools i'd never even heard of mesothelioma until a few months ago, now it seems to be everywhere. I know it's supposed to peak around now but still...

My friends are trying to arrange a xmas get together and the thought of it made me cry. I don't really know why. I guess because it feels strange that there are people out there looking forward to xmas when it's going to be such a tough one (in fact every xmas is going to be tough from now on) for us.

I still really really wish this wasn't happening.

Bless you Bonapp I wish it wasn't happening either , the thought of so many people watching a parent die from cancer is heart breaking.
I'm sure you will enjoy the wedding but of course it will be bittersweet. But it will be great that your dad can be there and will give you all some lovely memories.
My best friends dad is really ill now, she is going through hell watching his deterioration in hospital.
I found some texts yesterday I sent to her in my dad's last days, it really upset me reading them back but I can't bring myself to delete them I was struggling again yesterday.
I think I was tired and all the Xmas stuff gets to me.
It still occasionally suddenly hits me like a blow to the heart that dad has gone.I'm happy and laughing but inside is a constant pain which I guess will never go away.

Hello,

Firstly I'm so sorry you are all in such pain on this thread and having to show such immense strength and bravery, when it's so hard to just keep going

Secondly, would you mind if I joined you? Sadly, after 10 weeks of investigations and after being told my dad's prostate cancer was contained, we learned yesterday that it's spread and is very aggressive. I just don't know what to do

Dad continues to do well, he’s put weight on and is feeling good. We all thought he would’ve deteriorated by now so it’s great that he hasn’t. However, he’ll start chemo as part of a trial soon. I’m a bit apprehensive as it’ll mean he’ll then become a real cancer patient with appointments, scans, poking, prodding, and not to mention any potential chemo side effects. He’s up for it though so I’m happy to support his decision.

A colleague told me today she lost her 30 year old brother a few years ago after he’d had cancer on and off for 8 years. How do you cope with all that uncertainty and pain for all that time? More evidence that so many people have gone through, are going through or will go through so much hurt. I was so naive before that life was good and fine and happy, and ok in parts it still is, but it’s unbelievably sad for lots of people.

millie hello and do so sorry you are going through similar with your dad. The utter despair is horrible.

millie so sorry you have had to.join us

bonapp so glad your Dad is doing well, just take each day as it comes and enjoy dads health with him. The doctor at my dad's inquest said mesothelioma can go either way. Sometimes, like with my dad it suddenly takes hold and you have weeks. But he also sees cases of people lasting 2-3 year's after diagnosis.
A work colleagues dad has recently been diagnosed with the same thing. Before dad is never heard of it

How are you @myguidejools? I've been thinking about you...

@Millie2013 hope you and your DF are ok.

@hotpinkangel19 - I think of you often too.

I'm back in the UK. Dad is suffering from pain at night and not sleeping well. He's quite spritely in the day though I can hear he is more breathless. He's definitely enjoying the simple pleasures in life which is lovely to see - disappearing into his office to mess around with his computer with a bottle of red and the music up loud seems to be a current fave activity!

He will have another scan and is now in touch with a pain consultant who he says is really lovely. He's decided not to do the trial, so no chemo, and we all (inc him) feel relieved about that.

And in terms of how he might deteriorate, it seems it's likely that it might be a cold or infection that would make him weaker and that he might not have enough strength to recover fully, or at all.

As you say jools I'd never heard of mesothelioma before and now it seems to be popping up everywhere sadly. I understand there are 3 types - typical that my dad gets the aggressive one. But I guess the "silver lining" is that we don't have a couple of years with treatment, results, uncertainty hanging over everything, though we would have more time I suppose. we just have the shitness of knowing he might not see the spring

Sending love to anyone who needs it

bonapp thanks for thinking about me. I think about you and hotpinkangel too.
It's hard to believe your Dad has the aggressive type as it sounds like he's doing well at this moment in time. Long may it continue.
Funnily (or Not really funny atall) my dad didn't suffer from any pain, The coroner concluded that dad was killed by pneumonia that was caused by mesothelioma.

I guess it might not feel like it jools but that’s really good that he wasn’t in pain. I think my dad would prefer to go that way rather than being in pain, or getting to the point where he can’t breath and is gasping for breath. Doesn’t bear thinking about really.

I think dad thinks it’s all manageable and then some nights it’s not so it brings it right back that this is serious stuff. The pain consultant sorted some new stuff today which seems better so that was good, and quick..

That's true bonapp I'm glad dad wasn't in pain. The struggling to breathe was enough to cope with. It's a horrible crappy disease, I wouldn't wish it on anybody.
I'm glad your dads pain consultant seems on the ball, That's reassuring

Dad woke up all woozy/dopey/giggly from his new drugs. But I think once it wore off he must’ve crashed a bit as he was grumpy, sulky and snappy with us all day and night. He made a fuss over everything he possibly could. I’m sure he was just feeling down or frustrated or whatever but it’s been quite a tough day.

I leave in the morning to go home but hopefully he’ll snap out of it and have a brighter day tomorrow.

bonapp hope you had a safe journey back home. How was your Dad when you left? It must be tough for him. My dad used to get so frustrated and fed up. I used to feel for mums sanity as it was hard, both mentally and physically for her too

As expected dads latest scan shows the cancer has spread but that in itself seems to count for pretty little as docs think he’s doing fine. He’s had some new advice re the drugs so hopefully that will settle things down a bit.

I’m hoping he won’t be moody over Xmas.

I’m a bit lost in terms of buying presents this year. It feels so random/trite. In fact I’ve seen a couple of bits I’ll order for dad but what the hell do I get for my step-mum? She doesn’t want a candle/scarf/book/perfume ffs.

Oh bonapp it sucks doesn't it
I don't know what to suggest re Xmas presents. Like you say, it's all so trite. What on earth can you buy?! Would a nice meal out be Ok next time you visit? Is your Dad eating Ok?
Incidentally, my neighbour who is in his 70's has had cancer for years. They keep scanning him and it keeps spreading but he's fine! He does his gardening, goes shopping, drives, walks to the shop etc. He has radiotherapy every so often but hes amazing really.
Missing my dad this week, we've had a few family birthdays and his absence was so obvious. I've been sort of numb really. Mums being brave, but she hates the evenings. I hate to think of her being lonely

Thank you both for thinking about me, I often think of you both, but worry about posting in case I upset you by talking about it all. Just want you both to know I'm here if you ever need to talk  Sorry you're on here too @Millie2013 this thread has been some of the best support I've had and I'm really grateful to you all xx