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.

jools I'd love to say try not to worry/panic but i know that's just not doable. It's exhausting though so I hope you can look after yourself too.

I feel horribly guilty at the moment for being able to plod on a bit when dad is at home living it whilst I tune in and tune out as and when work/children let me. Dad and I have been texting every day over random stuff - books, films etc which has been lovely but I really hate that there is something sinister hanging in the air.

In my head the oncology appt tomorrow will provide answers, a schedule or timeline and give us the means to plan on how to 'do' the next few months. However I imagine the reality is more waiting for tests, or sorting out treatment or just taking it day by day. All feels like a wait and a waste of what little time we may have left with dad. We need to pack in fun and love whilst we can can. I don't want to base everything on tests and treatment and waiting and and seeing. And the inevitable decline is such a horrible horrible thought.

I read once about parallel planning - planning for life and planning for death at the same time. It's too heartbreaking to think about really.

Sorry, I'm not sure I'm being very comforting right now.

hot waiting is awful, all we do is plod from one thing to another, it's agony! I sometimes think I'm too close to dad, which seems ridiculous to say but I see him every day, which is my choice. At the moment he's constantly on my mind.
My sibling on the other hand lives 4 hrs drive away and has seen dad twice in the past 5 months.obviously sibling is also worried but is not living in dad's pocket like me.
Please let me know how the appointment goes tomorrow xx

I think I would find it harder if I was closer. Somehow the distance makes it easier to compartmentalise. Though then I feel guilty and I wish I could be there to do something, anything.

I'm sure your dad appreciates you seeing him a lot. I think it's normal to find this all-consuming, doesn't make it any easier though. Are you still off work?

Thank you re tomorrow....

I spoke to my GP today and it was agreed that I be signed off for another week. In a way I'm glad as it's a stressful job (NHS) with long hours, but I feel guilty and think the longer I'm off the harder it will be to go back I wish I could stop feeling so panicked.

@BonApp hope the appointment gives you all some answers tomorrow. @MyGuideJools time off work is good, you need to look after yourself too Dad's illness all happened while I was off work (I only work term time) so I had to look after my children and juggle spending time with Dad. Spoke to Dad's doctor who was very open and honest about everything - CT scan results and illness, he said Dad had more than likely had it for years and just never known, it's slow growing and not that common. The CT scan report had shocked him, he said, although it was very unusual for him to decline so fast with the type he had. Dr was visiting him every day and saw him at 5pm the night he died and didn't expect it. Dad died at 11:50. Very fast. We had no answers from the hospital, felt like a whirlwind there, but I feel I do have some now, and understand why they couldn't have done anything. The doctor also told me without me asking that it wasn't genetic, Which obviously is a relief.
Thinking of you all xxx

jools only you know if being back at work would provide a distraction or whether it would stress you out. I'm glad you have a supportive GP though, so if you need the time off, you should take it.

hot I don't know whether a quicker (ie less suffering) or longer (ie more time) decline is better but I'm glad you feel like you've had some answers. How are you holding up anyway? How is your bump?

I feel like there's no news that could be worse now, and that whatever comes now is just information per se. I wonder if I'll still feel like that after to talking to dad later!

bon I will take each day as it comes work wise, it's nice to not think about it for a bit.
I know what you mean about no more bad news. I keep thinking we should be due some good news but I don't think that's coming any time soon! I don't actually think dad has a clue about prognosis. I think he believes he will be 'cured' like he was with his other (less serious) cancer.
I'm actually dreading what oncology are going to say to him next week tbh.
He's so,so weak and on oxygen a lot of the time. I don't know how much more he can take. Mentally tho he's 100%
I hope you get positive news from your dad later

hot I'm glad you have some answers, however tough that may be to face. I hope you are looking after yourself and bump

So I think today was just a general onc intro meeting. They talked about chemo but said it might be quite gruelling for very little or no benefit. They talked about dad seeing xmas and ny but that much past that will be a bonus.

I don't know why but I thought I'd feel better after today. I really don't.

BonApp

bon that's crap, I'm so sorry
I think we will get exactly the same talk next week. Don't say if you would rather not talk about it but did your dad ask for a time scale or did they just tell him?
I really don't want them to tell my dad, I think it will make things worse for him as he's already quite down.

I don't know how they talked about timescales really, not sure how it came up I'm afraid. I guess it would've been whilst they were talking about chemo not doing much etc.

Could you get in touch with your dad's nurse and talk to her about it? I hope you have better news jools

I still can't believe this is happening really. On the surface my dad is fine.

I love him so much. He was the first person to hold me when I was born as my mum had me via c-section under a GA. He talked about during his FOB speech at our wedding.

Oh bon I find it hard to comprehend how they can predict that timescale for your dad if he's not even showing signs of being ill. Has he any symptoms at all? What took him to the Dr in the first place?

Sorry, I'm firing questions at you!! Please don't feel u need to answer them, I'm just curious.
They thought my dad had pulmonary fibrosis when he first became really breathless. One Dr even told him it's not cancer. It's taken months to get this diagnosis.

Well he's on some blood pressure medication and one of the side effects was a cough and they'd recently changed the dose, plus he was getting over a cold. They went on holiday in May and he got breathless walking up and down hills but just thought he was unfit. Went to the GP when he got home to talk about the other medication and tweak the dose again and he only really mentioned the cough by chance as he did a small cough whilst at the GP. GP listened to his chest and referred him for an X-ray, which showed shadows, and plaques indicating asbestos exposure, which led to a scan. This led to the talc pleuradesis / fluid drain / biopsy in late July.

He lost some weight waiting for the procedure which I know is a symptom of cancer but this seems to be due to stress (and he went right off drinking) and after the procedure he got his appetite back and his weight seems to have stabilized.

Now his chest is tender but they seem to think that's because of the procedure and can take 3 months before it's not sore.

He'll have another scan in the next week or so and at his next appt they'll look st whether the cancer has changed. Apparently it's only on the lung lining on one side and hasn't spread elsewhere.

It is the more aggressive of the three mesothelioma types (sarcomatoid).

I saw something whilst googling last night about clinical trials having a bit more success than other chemo. Whether dad would be interested or not I don't know. That's at Barts in London which is about 1-1.5hr drive away. I'll look into it more and share it with dad. I don't think he'll want to be prodded and poked about if it's not going to benefit much. And how much extra time do you class as a benefit? I dunno. Mixed feeling on the trials - as in I don't want to pressure dad, but if there is something that could help (and what if it gives him another year??) it feels worth at least considering, though I'd understand totally if he doesn't want to.

I don't know. Struggling at the mo to think about it all. My friends knew there was an appt yesterday and sent good luck wishes during the day. I can't face telling them, don't really know why.

That sounds just like dad's story really. What I don't understand and I haven't asked anyone yet is if it's in the lining and not spread why is the timescale so short??
I saw that clinical trials are carried out at the Royal Marsden too but like you say, it's not up to us.
I just feel so hopeless as I'm sure you do too. I understand what you mean about not telling friends yet. You need to get your head around it first.

Just want to send massive hugs to everyone on this thread bon, hot and Jools in particular

I sadly have experience of mesothelioma - my lovely granddad had it, and a very close friend's dad did too. I won't post more than that, but I understand what a nasty little so and so that particular form of cancer is :(

Thanks lollipop

I think it's just aggressive jools. Not having answers is really tough-going, especially as I'm guessing you've had all the stress about the diagnosis. Maybe try your dad's nurse, perhaps she could offer some insights. Do you know what kind of meso your dad has?

I wish they'd told dad that they'd have a better idea of the prognosis once the next scan results were through. Or maybe they just know that once it's there it ramps up quickly. Bastard thing that it is.

Thanks lollipop, it sadly seems to strike lots of people. Sorry it's touched you and your friend too.

I just want, with all my might, for this to not be happening.

Dear BonApp,

I am so sorry to hear this. Look after yourself and each other. My thoughts are with you.

Bels

Thanks Lollipop x
This is the thing about timescales.... no one could give us one for Dad.... he had no biopsy as the scan showed extensive spread so not needed to put him through that. There was nothing they could have done to save him... after seeing the scan report I completely understand this, but I didn't until then. Sometimes they just really don't know, but if it's only in the lining and not spread, I think I would be asking questions?? Maybe contact Macmillan and talk to them? Thinking of you xxx

I'm in a right state today. Dad is so fed up, says it's hell as all he can do is sit in his chair all day. Him and mum are bickering and I've just burst into tears in front of them which then upset them.
I've also burst into tears in sainsburys and I'm now at home crying again. It really is a living nightmare.

bon we've not been told what type it is, just that it's in the lining on one side.

My friend's dad had mesothilioma in one lung and I never understood why they did not remove his lung at that point before it spread.

Things are bad right now dad's breathing is so laboured. He's in hospital on a lot of oxygen. It's bloody awful to watch him gasping for breath. I can't stand the thought of him all alone in hospital struggling to breathe my lovely dad.

Oh no @MyGuideJools Xxx
Thinking of you xx