Living with cancer (and madwullie memorial thread)

[welshbairn]

1 hour ago, Thistle_do_nicely said:

Fiancee has been in a&e with pleural effusions. Never heard of them before this, mum has and talked to me about pleurosis and realistically to brace myself - which im not remotely judging her for, mrs has lost 3kg+ inlast two weeks, isnt eating, getting worse.

If im reading it right (arguably a bad idea, im no doctor) if its not malignant its treatable, if its malignant we're in paliative care territory. Edit: she was in aen last week and they let her out. Symptoms didnt improve, back in aande. Im bricking it, not enough lung fluid to drain last time. There is now, if theres cancer cells in the lungs i think im right theres no treatment options left.

Either way chemo isnt seeming to have much impact. Im absolutely gutted, and bracing for the worst tbh, for all the good that does.

Edit: my mum said marie curie are AMAZING. she phoned them greeting and they were so good at dealing in being matter of fact, brought up a tonne of support thats available to us.

Really sorry about what you and your fiancee are going through, and haven't much to offer other than that sometimes cancers can be treated successfully and it's sometimes better to hope for the best and let the worst take care of itself.  Wishing you and your fiancee every bit of respite and better news as you struggle through this. 

Edited September 9, 2022 by welshbairn

[Hard Graft]

On 30/08/2022 at 03:37, Raidernation said:

I have an appointment with a neurologist later this month to determine the cause of my inconsistent but increasingly prevalent tremor.
Possibilities:
1. I’ve always had a bit of a tremor(runs in my family) was diagnosed years ago in Scotland as “non-specific tremor”
2. A result of the years of alcoholism. Was always a symptom of withdrawal, often so extreme I couldn’t hold a glass/cup more tha 1/3 full.
3. Parkinson’s/Alzheimer’s/MS or stroke damage.

I’m a wee bit concerned.

Mate, 65 yrs,  has a very bad hand tremor, been to doctor and confirmed it was not caused by stroke of Parkinsons. They have had him on epilepsy medication gradually taking him up to the maximum dose. During this time he was not allowed to drink alcohol. Had no effect on him and they have carried out scans etc.  Have stated that they could do a deep brain operation but he does not fancy this and would rather live with the shake than take the chance of the op. As a result he is now off epilepsy medication and waiting to see if they can offer him something else.

Strangely he does not shake when he is asleep and if he holds the shaking hand then his arm starts to shake. Doctor has decided it is hereditary but has now noticed that his other hand is getting a slight tremor as well.

At times you do not know how well off you are in comparison with others

Good luck with your diagnosis.

[Jacksgranda]

13 hours ago, Thistle_do_nicely said:

Fiancee has been in a&e with pleural effusions. Never heard of them before this, mum has and talked to me about pleurosis and realistically to brace myself - which im not remotely judging her for, mrs has lost 3kg+ inlast two weeks, isnt eating, getting worse.

If im reading it right (arguably a bad idea, im no doctor) if its not malignant its treatable, if its malignant we're in paliative care territory. Edit: she was in aen last week and they let her out. Symptoms didnt improve, back in aande. Im bricking it, not enough lung fluid to drain last time. There is now, if theres cancer cells in the lungs i think im right theres no treatment options left.

Either way chemo isnt seeming to have much impact. Im absolutely gutted, and bracing for the worst tbh, for all the good that does.

Edit: my mum said marie curie are AMAZING. she phoned them greeting and they were so good at dealing in being matter of fact, brought up a tonne of support thats available to us.

My heart goes out to you, T_d_n

[Raidernation]

Yay, saw doc last night. Either "essential tremor" or damage from years of alcohol abuse (no way to 100% diagnose which). Nothing more sinister than that .

[welshbairn]

21 hours ago, Raidernation said:

Yay, saw doc last night. Either "essential tremor" or damage from years of alcohol abuse (no way to 100% diagnose which). Nothing more sinister than that .

Given the alternatives I think congratulations are in order!

Edited September 10, 2022 by welshbairn

[Brother Blades]

On 09/09/2022 at 01:24, Thistle_do_nicely said:

Fiancee has been in a&e with pleural effusions. Never heard of them before this, mum has and talked to me about pleurosis and realistically to brace myself - which im not remotely judging her for, mrs has lost 3kg+ inlast two weeks, isnt eating, getting worse.

If im reading it right (arguably a bad idea, im no doctor) if its not malignant its treatable, if its malignant we're in paliative care territory. Edit: she was in aen last week and they let her out. Symptoms didnt improve, back in aande. Im bricking it, not enough lung fluid to drain last time. There is now, if theres cancer cells in the lungs i think im right theres no treatment options left.

Either way chemo isnt seeming to have much impact. Im absolutely gutted, and bracing for the worst tbh, for all the good that does.

Edit: my mum said marie curie are AMAZING. she phoned them greeting and they were so good at dealing in being matter of fact, brought up a tonne of support thats available to us.

Not a nice thing to deal with, hoping that things turn out for the better. I guess there’s not much can be said other than try to stay strong. 

[Honest Saints Fan]

On 09/09/2022 at 01:24, Thistle_do_nicely said:

Fiancee has been in a&e with pleural effusions. Never heard of them before this, mum has and talked to me about pleurosis and realistically to brace myself - which im not remotely judging her for, mrs has lost 3kg+ inlast two weeks, isnt eating, getting worse.

If im reading it right (arguably a bad idea, im no doctor) if its not malignant its treatable, if its malignant we're in paliative care territory. Edit: she was in aen last week and they let her out. Symptoms didnt improve, back in aande. Im bricking it, not enough lung fluid to drain last time. There is now, if theres cancer cells in the lungs i think im right theres no treatment options left.

Either way chemo isnt seeming to have much impact. Im absolutely gutted, and bracing for the worst tbh, for all the good that does.

Edit: my mum said marie curie are AMAZING. she phoned them greeting and they were so good at dealing in being matter of fact, brought up a tonne of support thats available to us.

Sending best wishes to your fiancee. 

[House Bartender]

That's a truely sh1tty situation @Thistle_do_nicely and, like everyone else I wish your fiancee, you and all around well. Welshbairn has nailed it.

[Jacksgranda]

On 09/09/2022 at 20:06, Raidernation said:

Yay, saw doc last night. Either "essential tremor" or damage from years of alcohol abuse (no way to 100% diagnose which). Nothing more sinister than that .

That's good.

[Thistle_do_nicely]

Sad to do this but yeah, fiancee (Amanda, happy enough to put her first name on here) died recently.

There's a lot that stings; the worst part im finding is that there'll never be any more text or call to/from her ever again. That feels... odd, I know it myself, and theres more that hurts too; i think its just the not having her around at the house anymore and ordinarily i *should* be able to still get a hold of her, like its as if shes at the beatson or her grans or somewhere, and she'd get in touch or call me back or SOMETHING, but she's gone. Seeing her name flash up on my phone isn't going to happen, and thats hurting more than it perhaps should. Things like her calling on my lunch break etc.

Lots of regret too, not spending more time with her through the years and doing stupid bullshit instead. Her asking me for games of Scrabble and me refusing. Why did I do that?

The flip side is there've been plenty of nice dinners out and nights out too. My mum reminded me of us going to see the new top gun and getting a chippy. That was a good night. I wish more than anything that there could still be more of those.

Her asking for help in her last few days was gut wrenching, just worse every day. My Dad made a fair point as she was peaceful once the meds were all upped; she went peacefully enough in the end, and theres worse ways to go. She wasnt even 40 though, which feels like a farce.

Marie Curie were outstanding, as were the district nurses. Cordia were... hit and miss, but really thats down to time constraints/training more than them being deliberately poor. They're probably fine with, say, elderly care, but im not keen on them with palliative services. Thats for another thread, perhaps.

I'll miss her horribly. I'll not forget her.

[alta-pete]

That’s heartbreaking. 

[SweeperDee]

Sad to do this but yeah, fiancee (Amanda, happy enough to put her first name on here) died recently.
There's a lot that stings; the worst part im finding is that there'll never be any more text or call to/from her ever again. That feels... odd, I know it myself, and theres more that hurts too; i think its just the not having her around at the house anymore and ordinarily i *should* be able to still get a hold of her, like its as if shes at the beatson or her grans or somewhere, and she'd get in touch or call me back or SOMETHING, but she's gone. Seeing her name flash up on my phone isn't going to happen, and thats hurting more than it perhaps should. Things like her calling on my lunch break etc.
Lots of regret too, not spending more time with her through the years and doing stupid bullshit instead. Her asking me for games of Scrabble and me refusing. Why did I do that?
The flip side is there've been plenty of nice dinners out and nights out too. My mum reminded me of us going to see the new top gun and getting a chippy. That was a good night. I wish more than anything that there could still be more of those.
Her asking for help in her last few days was gut wrenching, just worse every day. My Dad made a fair point as she was peaceful once the meds were all upped; she went peacefully enough in the end, and theres worse ways to go. She wasnt even 40 though, which feels like a farce.
Marie Curie were outstanding, as were the district nurses. Cordia were... hit and miss, but really thats down to time constraints/training more than them being deliberately poor. They're probably fine with, say, elderly care, but im not keen on them with palliative services. Thats for another thread, perhaps.
I'll miss her horribly. I'll not forget her.

I’m really sorry to hear this. I know it’s easy for me to say but don’t guilt, torment, or otherwise blame yourself for anything that happened. You did everything you could. You loved her, and she loved you. Cherish the good times. The small reminders will hurt so badly at times, it never goes away, just gets a bit easier. All so cliche I know, but please believe me.

[RH33]

7 hours ago, Thistle_do_nicely said:

Sad to do this but yeah, fiancee (Amanda, happy enough to put her first name on here) died recently.

There's a lot that stings; the worst part im finding is that there'll never be any more text or call to/from her ever again. That feels... odd, I know it myself, and theres more that hurts too; i think its just the not having her around at the house anymore and ordinarily i *should* be able to still get a hold of her, like its as if shes at the beatson or her grans or somewhere, and she'd get in touch or call me back or SOMETHING, but she's gone. Seeing her name flash up on my phone isn't going to happen, and thats hurting more than it perhaps should. Things like her calling on my lunch break etc.

Lots of regret too, not spending more time with her through the years and doing stupid bullshit instead. Her asking me for games of Scrabble and me refusing. Why did I do that?

The flip side is there've been plenty of nice dinners out and nights out too. My mum reminded me of us going to see the new top gun and getting a chippy. That was a good night. I wish more than anything that there could still be more of those.

Her asking for help in her last few days was gut wrenching, just worse every day. My Dad made a fair point as she was peaceful once the meds were all upped; she went peacefully enough in the end, and theres worse ways to go. She wasnt even 40 though, which feels like a farce.

Marie Curie were outstanding, as were the district nurses. Cordia were... hit and miss, but really thats down to time constraints/training more than them being deliberately poor. They're probably fine with, say, elderly care, but im not keen on them with palliative services. Thats for another thread, perhaps.

I'll miss her horribly. I'll not forget her.

I'm so sorry to read this. Pull those close to you closer for support. And the motley bunch on here are good at times to vent to.

[Jacksgranda]

Sorry to hear this

[Brother Blades]

10 hours ago, Thistle_do_nicely said:

Sad to do this but yeah, fiancee (Amanda, happy enough to put her first name on here) died recently.

There's a lot that stings; the worst part im finding is that there'll never be any more text or call to/from her ever again. That feels... odd, I know it myself, and theres more that hurts too; i think its just the not having her around at the house anymore and ordinarily i *should* be able to still get a hold of her, like its as if shes at the beatson or her grans or somewhere, and she'd get in touch or call me back or SOMETHING, but she's gone. Seeing her name flash up on my phone isn't going to happen, and thats hurting more than it perhaps should. Things like her calling on my lunch break etc.

Lots of regret too, not spending more time with her through the years and doing stupid bullshit instead. Her asking me for games of Scrabble and me refusing. Why did I do that?

The flip side is there've been plenty of nice dinners out and nights out too. My mum reminded me of us going to see the new top gun and getting a chippy. That was a good night. I wish more than anything that there could still be more of those.

Her asking for help in her last few days was gut wrenching, just worse every day. My Dad made a fair point as she was peaceful once the meds were all upped; she went peacefully enough in the end, and theres worse ways to go. She wasnt even 40 though, which feels like a farce.

Marie Curie were outstanding, as were the district nurses. Cordia were... hit and miss, but really thats down to time constraints/training more than them being deliberately poor. They're probably fine with, say, elderly care, but im not keen on them with palliative services. Thats for another thread, perhaps.

I'll miss her horribly. I'll not forget her.

Very sorry to hear of your loss. 

[eindhovendee]

13 hours ago, Thistle_do_nicely said:

I'll miss her horribly. I'll not forget her.

Christ that was a hard read.

All the best mate.

RIP Amanda.

[Honest Saints Fan]

So sorry for your loss TDN 

[Benjamin_Nevis]

16 hours ago, Thistle_do_nicely said:

Sad to do this but yeah, fiancee (Amanda, happy enough to put her first name on here) died recently.

There's a lot that stings; the worst part im finding is that there'll never be any more text or call to/from her ever again. That feels... odd, I know it myself, and theres more that hurts too; i think its just the not having her around at the house anymore and ordinarily i *should* be able to still get a hold of her, like its as if shes at the beatson or her grans or somewhere, and she'd get in touch or call me back or SOMETHING, but she's gone. Seeing her name flash up on my phone isn't going to happen, and thats hurting more than it perhaps should. Things like her calling on my lunch break etc.

Lots of regret too, not spending more time with her through the years and doing stupid bullshit instead. Her asking me for games of Scrabble and me refusing. Why did I do that?

The flip side is there've been plenty of nice dinners out and nights out too. My mum reminded me of us going to see the new top gun and getting a chippy. That was a good night. I wish more than anything that there could still be more of those.

Her asking for help in her last few days was gut wrenching, just worse every day. My Dad made a fair point as she was peaceful once the meds were all upped; she went peacefully enough in the end, and theres worse ways to go. She wasnt even 40 though, which feels like a farce.

Marie Curie were outstanding, as were the district nurses. Cordia were... hit and miss, but really thats down to time constraints/training more than them being deliberately poor. They're probably fine with, say, elderly care, but im not keen on them with palliative services. Thats for another thread, perhaps.

I'll miss her horribly. I'll not forget her.

That was a tough read so i can't even begin to imagine what you're going through. Genuinely sorry for your loss. 

Re the regrets, I think our minds always do this to us. Instead of letting you think about all the cool and nice stuff you'd have done together, it makes you think about absolutely tiny things like not playing scrabble. She probably stopped giving a shit about that about 30 seconds after you'd said no. However the Top Gun/Chippy/ Nights out are the kinds of things which truly stick.

The next while is going to be pretty tough, but you'll get through it with the help of friends, family, your memories and even the fuckin' dafties on P&B. 

All the best man. 

[Archie McSquackle]

So sorry to hear about your loss and for those others close to Amanda - may she rest in peace.

[Bairnardo]

That was a tough read so i can't even begin to imagine what you're going through. Genuinely sorry for your loss. 
Re the regrets, I think our minds always do this to us. Instead of letting you think about all the cool and nice stuff you'd have done together, it makes you think about absolutely tiny things like not playing scrabble. She probably stopped giving a shit about that about 30 seconds after you'd said no. However the Top Gun/Chippy/ Nights out are the kinds of things which truly stick.
The next while is going to be pretty tough, but you'll get through it with the help of friends, family, your memories and even the fuckin' dafties on P&B. 
All the best man. 

Yeah.... I had typed something like this earlier and deleted it as I felt it missed the mark a wee bit but it was by and large what you are saying. Hindsight tortures us with what-ifs.

It's the easiest thing in the world to assume you could have done more at the time, but at that time when you were sure you were doing enough, you could never know how long was left.

Anyway, can only echo what everyone else has said.... Really sorry to hear your story TDN, very very sad. Don't be afraid to use the crutches folk offer you. The folk that are offering to be there for you want to be there for you.

All the best.