Well, what a deeply unpleasant week this has been.

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Bernd
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Re: Well, what a deeply unpleasant week this has been.

Post by Bernd » Fri, 5. Nov 21, 23:54

pjknibbs wrote:
Wed, 3. Nov 21, 05:17
Thanks, Bernd.

Update, by the way: had a PET scan on Monday to figure out how much (if any) of the cancer is left and thus what the next steps are. Those sure are weird--it's when you get injected with the marker stuff from a distance of four feet so the radiographer isn't anywhere near you that you start to realise they take seriously all those warnings about not coming into contact with anyone under 18 or who might be pregnant because you're going to be radioactive for some time! Has to be said the actual procedure wasn't particularly unpleasant, I was basically just lying in the CAT scanner for about 20 minutes as they gradually scanned my entire body.
Wow... Did not know this exists even though my cousin works in radiology. All the best wishes for these results!

-Bernd

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Re: Well, what a deeply unpleasant week this has been.

Post by Gavrushka » Sat, 13. Nov 21, 08:11

Just concluding the story of mum's journey through cancer on this thread.

Mum was moved into St Teresa's Hospice in Darlington on Tuesday and passed away on Thursday. The hospice called at 3:00am to let me know her condition had deteriorated, and I drove through and sat with her until she drifted away with such serenity just after 9:00am. She had a gentle smile on her face when she went. She'd loved the hospice ever since a single day's visit when she had breast cancer the first time around, 20 years earlier. It's where she'd wanted to be.
“Man, my poor head is battered,” Ed said.

“That explains its unusual shape,” Styanar said, grinning openly now. “Although it does little to illuminate just why your jowls are so flaccid or why you have quite so many chins.”

“I…” Had she just called him fat? “I am just a different species, that’s all.”

“Well nature sure does have a sense of humour then,” Styanar said. “Shall we go inside? It’d not be a good idea for me to be spotted by others.”

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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Sat, 13. Nov 21, 09:25

Gavrushka wrote:
Sat, 13. Nov 21, 08:11
Mum was moved into St Teresa's Hospice in Darlington on Tuesday and passed away on Thursday.
That was such a short time, but at least she passed away painlessly and at peace. I hope you're holding up yourself?

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Re: Well, what a deeply unpleasant week this has been.

Post by BaronVerde » Sat, 13. Nov 21, 11:07

My sincere sympathy.

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Re: Well, what a deeply unpleasant week this has been.

Post by Gavrushka » Sat, 13. Nov 21, 22:07

pjknibbs wrote:
Sat, 13. Nov 21, 09:25
Gavrushka wrote:
Sat, 13. Nov 21, 08:11
Mum was moved into St Teresa's Hospice in Darlington on Tuesday and passed away on Thursday.
That was such a short time, but at least she passed away painlessly and at peace. I hope you're holding up yourself?

Mum had been in hospital for a week and a half prior, and the MacMillan nurses based there had been trying to get her a hospice place for most of that time. Tuesday was the first time a room came free. It gave one of my sisters a chance to spend a little time with her as the hospital would only allow one nominated visitor.

I think, as a fulltime carer for her, grieving started when I realised that there could be no further treatment, so it did make it more bearable. Still, losing your mum is always going to be the hardest thing most of us will ever go through, exacerbated in my case as caring for her was all I did. - I could never do that again, and I don't know how the caring profession copes, especially those in palliative roles.
“Man, my poor head is battered,” Ed said.

“That explains its unusual shape,” Styanar said, grinning openly now. “Although it does little to illuminate just why your jowls are so flaccid or why you have quite so many chins.”

“I…” Had she just called him fat? “I am just a different species, that’s all.”

“Well nature sure does have a sense of humour then,” Styanar said. “Shall we go inside? It’d not be a good idea for me to be spotted by others.”

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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Sun, 14. Nov 21, 09:34

Gavrushka wrote:
Sat, 13. Nov 21, 22:07
Still, losing your mum is always going to be the hardest thing most of us will ever go through
I lost my father 30 years ago now, I have a fear of what things will be like when my mother dies as well. Glad to hear you're more or less handling things, though.

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Re: Well, what a deeply unpleasant week this has been.

Post by Chips » Sun, 14. Nov 21, 19:00

Condolences, must be comforting at least that it was peaceful and in an environment she was comfortable with, with you beside her.

I think it's a day we all dread and I have no comprehension over how to handle it.

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Re: Well, what a deeply unpleasant week this has been.

Post by Redvers Ganderpoke » Sun, 14. Nov 21, 20:01

Gavrushka wrote:
Sat, 13. Nov 21, 08:11
Just concluding the story of mum's journey through cancer on this thread.
My condolences, even when you know it's coming it's still a shock and unpleasant.
My Mum passed in February (aided by covid) but had not been well for several years (chronic heart failure and vascular dementia).
A flower?

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Re: Well, what a deeply unpleasant week this has been.

Post by greypanther » Mon, 15. Nov 21, 14:00

My sincere sympathies Gavrushka. I know where you are at, my mum died from cancer in 2006, aged just 68, my dad, from cancer too, in 2000, aged just 66, cancer is horrible and it is quite worrying that one in two of us will get it...

You are right about carers too. I care for my wife full time, 24/7, doing things I really shouldn't have to for my wife. My mother in law used to work in a hospice too, which was for very, very stressful for her. She almost had a breakdown and staff turnover was high, but the last straw came when someone told her that she was just an unskilled worker ( glorified cleaner! ) and should just keep quiet. She left.

Being a carer is in fact a highly skilled and stressful job, if they are any good. There is a programme on BBC 2 tonight at 9pm about the proffesion. I am afraid it is the second of two, with Ed Balls, but the first was interesting.

What I have taken away from it all, is that life is way too short and so many of us take way too much for granted, until it is too late. :(
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Re: Well, what a deeply unpleasant week this has been.

Post by BaronVerde » Mon, 15. Nov 21, 14:44

Eyes on the carers. You're awesome !

Not sure if I could.

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Re: Well, what a deeply unpleasant week this has been.

Post by Gavrushka » Mon, 15. Nov 21, 17:04

greypanther wrote:
Mon, 15. Nov 21, 14:00
My sincere sympathies Gavrushka. I know where you are at, my mum died from cancer in 2006, aged just 68, my dad, from cancer too, in 2000, aged just 66, cancer is horrible and it is quite worrying that one in two of us will get it...

You are right about carers too. I care for my wife full time, 24/7, doing things I really shouldn't have to for my wife. My mother in law used to work in a hospice too, which was for very, very stressful for her. She almost had a breakdown and staff turnover was high, but the last straw came when someone told her that she was just an unskilled worker ( glorified cleaner! ) and should just keep quiet. She left.

Being a carer is in fact a highly skilled and stressful job, if they are any good. There is a programme on BBC 2 tonight at 9pm about the proffesion. I am afraid it is the second of two, with Ed Balls, but the first was interesting.

What I have taken away from it all, is that life is way too short and so many of us take way too much for granted, until it is too late. :(
Thank you for your kind words, and yes I can see you've twice stood in my shoes. - What a horrid disease it is, and all the more so because I can't help but think that there simply isn't enough being done to rid the world of the scourge for once and for all. - As you say, something like 3 to 4 billion people alive now are going to experience cancer firsthand in their lives. Imagine a world where every country worked together, pooling resources to consign cancer to history for once and for all.

Yes, the life of a carer is one of constant devotion, and I don't think anyone on the outside can appreciate what it means to be 'on duty' every day, every hour, with no annual holiday or weekends off. - Some carers do get a little respite, but many more feel guilty at the prospect of not being the carer, even for one day.

You are absolutely right about the degree of skill involved in caring. You become an 'expert' on the one you care for, and are often required to liaise with medical personnel, even guiding them in some instances. - I have to say, the hospice where mum stayed was amazing. I'd have floored anyone who tried to criticise the staff. - Often relatives who've done nothing to look after their terminally ill family member try and project their own guilt onto the ones who *are* doing the caring.

I will watch the episodes you've mentioned, on iPlayer, but I'm not in the right place to do it at the minute. Thanks for the heads up.

Life is too short, you're right, and other than right now could well be too late. I always made sure mum had something that made her laugh, every single day. She would often say her 'heart was full,' and her gentle smile was always there, even when she was wracked by pain. It makes me so angry when family members hold grudges against each other, often over something so trivial they forget what it was, but don't speak to each other regardless. - I think the fragility of life, and the total absence of any form of guarantee on how much time any of us have left has changed me massively.
“Man, my poor head is battered,” Ed said.

“That explains its unusual shape,” Styanar said, grinning openly now. “Although it does little to illuminate just why your jowls are so flaccid or why you have quite so many chins.”

“I…” Had she just called him fat? “I am just a different species, that’s all.”

“Well nature sure does have a sense of humour then,” Styanar said. “Shall we go inside? It’d not be a good idea for me to be spotted by others.”

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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Mon, 15. Nov 21, 21:13

Seems if I didn't have crappy luck I'd have no luck at all--think I've caught Covid. Racing heart, high temperature, cough, nausea. Have sent off for a PCR test, will see what the results of that are, although means I can't leave my house until I get the all-clear.

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Re: Well, what a deeply unpleasant week this has been.

Post by greypanther » Mon, 15. Nov 21, 21:34

Gavrushka wrote:
Mon, 15. Nov 21, 17:04
Yes, the life of a carer is one of constant devotion, and I don't think anyone on the outside can appreciate what it means to be 'on duty' every day, every hour, with no annual holiday or weekends off. - Some carers do get a little respite, but many more feel guilty at the prospect of not being the carer, even for one day.
.......
Life is too short, you're right, and other than right now could well be too late. I always made sure mum had something that made her laugh, every single day. She would often say her 'heart was full,' and her gentle smile was always there, even when she was wracked by pain. It makes me so angry when family members hold grudges against each other, often over something so trivial they forget what it was, but don't speak to each other regardless. - I think the fragility of life, and the total absence of any form of guarantee on how much time any of us have left has changed me massively.
You are so right about the guilt. I need an operation, not urgently, I suppose, but it will put me out of action for at least six weeks. At first I was offered a week of respite care, which was just not good enough, but pushing, ( particularly from my surgeon, ) got longer respite offered. Problem is it will be awful for my wife, with both the effects of Covid and the terrible state of many care homes. Never mind that the respite could be miles away from me and she would have to isolate for the first two weeks, then limited visiting after that. I am not willing to put her through that. I can cope without the operation, if I am careful, but have had to put emergency plans at the ready. Not helped either by the lack of support from my in laws, which was the only reason for moving to this shithole we live in, all talk, little action. ( Lots of petty falling out though! )

I fully understand you not watching Ed Balls, not sure I will watching tonight, as to be honest it is a little too close to home. Sorry for dumping this on you, also not helping.

Be well Gavrushka.

I hope you do not have Covid pjknibbs, not good in your position, you be well too...
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Re: Well, what a deeply unpleasant week this has been.

Post by Gavrushka » Tue, 16. Nov 21, 07:47

pjknibbs wrote:
Mon, 15. Nov 21, 21:13
Seems if I didn't have crappy luck I'd have no luck at all--think I've caught Covid. Racing heart, high temperature, cough, nausea. Have sent off for a PCR test, will see what the results of that are, although means I can't leave my house until I get the all-clear.
Lord, I hope it isn't, but I'd also be very cautious about waiting for a test kit to arrive. - It could also be an infection, and that could need speedy medical intervention with your weakened immune system. - Have you access to a blood oximeter?

If you're feeling worse this morning, for the love of god take medical advice immediately.
“Man, my poor head is battered,” Ed said.

“That explains its unusual shape,” Styanar said, grinning openly now. “Although it does little to illuminate just why your jowls are so flaccid or why you have quite so many chins.”

“I…” Had she just called him fat? “I am just a different species, that’s all.”

“Well nature sure does have a sense of humour then,” Styanar said. “Shall we go inside? It’d not be a good idea for me to be spotted by others.”

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Re: Well, what a deeply unpleasant week this has been.

Post by Gavrushka » Tue, 16. Nov 21, 08:00

greypanther wrote:
Mon, 15. Nov 21, 21:34

You are so right about the guilt. I need an operation, not urgently, I suppose, but it will put me out of action for at least six weeks. At first I was offered a week of respite care, which was just not good enough, but pushing, ( particularly from my surgeon, ) got longer respite offered. Problem is it will be awful for my wife, with both the effects of Covid and the terrible state of many care homes. Never mind that the respite could be miles away from me and she would have to isolate for the first two weeks, then limited visiting after that. I am not willing to put her through that. I can cope without the operation, if I am careful, but have had to put emergency plans at the ready. Not helped either by the lack of support from my in laws, which was the only reason for moving to this shithole we live in, all talk, little action. ( Lots of petty falling out though! )

I fully understand you not watching Ed Balls, not sure I will watching tonight, as to be honest it is a little too close to home. Sorry for dumping this on you, also not helping.

Be well Gavrushka.

I hope you do not have Covid pjknibbs, not good in your position, you be well too...
One of the things the district nurses used to pummel me with every day when they came to change mum's dressings was I had to look after myself to be able to look after mum. - That guilty feeling can cause more harm than good, and given the length of waiting times for operations, it would be 'healthy' for you both to set the ball rolling now, including forward planning care for your wife while you're incapacitated. - There must be options other than care homes, but if not then planning now rather than seeing it arranged when your operation becomes an emergency will mean the standard of care your wife receives will be the highest possible, likely in a preferred location.

And I do know that feeling of isolation, with no one else prepared to hold the baton short-term. It's hard not to feel angry at them, but it's also not healthy for you.

Are you registered with your local council's caring community? They will often help, including arranging respite care while you recover.

But please, make sure you make arrangements now rather than rely on those emergency plans. - If it's just a week or two, that may also give the option of private care, perhaps mitigated massively by official funding for such things. - Again, speak to your local authority carer support.
“Man, my poor head is battered,” Ed said.

“That explains its unusual shape,” Styanar said, grinning openly now. “Although it does little to illuminate just why your jowls are so flaccid or why you have quite so many chins.”

“I…” Had she just called him fat? “I am just a different species, that’s all.”

“Well nature sure does have a sense of humour then,” Styanar said. “Shall we go inside? It’d not be a good idea for me to be spotted by others.”

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Re: Well, what a deeply unpleasant week this has been.

Post by greypanther » Tue, 16. Nov 21, 11:29

Gavrushka wrote:
Tue, 16. Nov 21, 08:00
One of the things the district nurses used to pummel me with every day when they came to change mum's dressings was I had to look after myself to be able to look after mum. - That guilty feeling can cause more harm than good, and given the length of waiting times for operations, it would be 'healthy' for you both to set the ball rolling now, including forward planning care for your wife while you're incapacitated. - There must be options other than care homes, but if not then planning now rather than seeing it arranged when your operation becomes an emergency will mean the standard of care your wife receives will be the highest possible, likely in a preferred location.

And I do know that feeling of isolation, with no one else prepared to hold the baton short-term. It's hard not to feel angry at them, but it's also not healthy for you.

Are you registered with your local council's caring community? They will often help, including arranging respite care while you recover.

But please, make sure you make arrangements now rather than rely on those emergency plans. - If it's just a week or two, that may also give the option of private care, perhaps mitigated massively by official funding for such things. - Again, speak to your local authority carer support.
I know, I cannot argue with anything there. I did write out quite a long answer, explaining things more, but then thought it would help no one, so deleted it. Thank you for your concern, especially considering your situation, but it will all work itself out fine in the end, I am sure. :)
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Re: Well, what a deeply unpleasant week this has been.

Post by Star_Raider15 » Thu, 18. Nov 21, 11:05

Girlfriend got fired this week. Her company was bought out and she was literally the last person they hired and the first person they fired as a form of "restructuring". It sucks because she finally managed to break into the gaming industry as a 3D designer and had it all taken away in 2 months. It's rough man since she poured her heart in it.

On the flipside, I have found a new artisanal beer brand in my home country named after Goibniu, an Irish Celtic beer god, that is pretty awesome, so I guess that's going well...
Last edited by Star_Raider15 on Tue, 5. Jul 22, 07:46, edited 2 times in total.
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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Fri, 19. Nov 21, 13:58

I return to the thread with both good and bad news. First, the good: the PCR test came back negative and the cough seems to be easing somewhat, so I apparently don't have Covid.

The bad: I had my booked video call with my oncologist. Headline news is: the chemo hasn't done the job. It made everything much smaller, but seems there's some resistant bits of the tumour in there. So, next step is to have a different type of chemo (guess I can wave goodbye to the small amount of hair I'd managed to regrow), followed up with a stem cell transplant to aggressively target the recalcitrant bits of tumour. She wants me to have at least one session of this new chemo before Christmas, so they're moving fast on this.

To say I'm disappointed would be an understatement...while I kind of expected this because of stuff I've noticed since chemo ended, it's still far more gut-wrenching to hear it in person than to imagine it.

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Re: Well, what a deeply unpleasant week this has been.

Post by Gavrushka » Fri, 19. Nov 21, 16:15

pjknibbs wrote:
Fri, 19. Nov 21, 13:58
I return to the thread with both good and bad news. First, the good: the PCR test came back negative and the cough seems to be easing somewhat, so I apparently don't have Covid.

The bad: I had my booked video call with my oncologist. Headline news is: the chemo hasn't done the job. It made everything much smaller, but seems there's some resistant bits of the tumour in there. So, next step is to have a different type of chemo (guess I can wave goodbye to the small amount of hair I'd managed to regrow), followed up with a stem cell transplant to aggressively target the recalcitrant bits of tumour. She wants me to have at least one session of this new chemo before Christmas, so they're moving fast on this.

To say I'm disappointed would be an understatement...while I kind of expected this because of stuff I've noticed since chemo ended, it's still far more gut-wrenching to hear it in person than to imagine it.
Paul, I'm really sorry to hear the last bit is being stubborn, but the previous treatment has had a major impact on reducing its size. Is the oncologist suggesting there is a second type of cancer cell there which needs a different treatment or is it a case of diminishing returns from continuing the same treatment? - The reason I'm sensitised to that is because mum had a secondary kind of cancer, and yet the biopsy wasn't done soon enough to identify this in time to save her. - Thing is, I can see they're leaping on this really quick with you, and I don't doubt the new treatment will get rid of it for once and for all. Losing your hair is a trivial price to pay, I'm sure you'll agree.

I can understand you must be disappointed, but the oncologists aren't saying anything other than the journey to cancer-free is a little bit longer than you would like. Wishing you all the best.
“Man, my poor head is battered,” Ed said.

“That explains its unusual shape,” Styanar said, grinning openly now. “Although it does little to illuminate just why your jowls are so flaccid or why you have quite so many chins.”

“I…” Had she just called him fat? “I am just a different species, that’s all.”

“Well nature sure does have a sense of humour then,” Styanar said. “Shall we go inside? It’d not be a good idea for me to be spotted by others.”

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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Fri, 19. Nov 21, 17:50

The implication is that these cells are resistant to the treatment, but even if that were not the case, I can't continue with R-CHOP as I have been--that includes a drug called Doxorubicin, aka the Red Devil, which is damaging to the heart over time. No point in saving me from cancer to then kill me with heart failure!

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