Well, what a deeply unpleasant week this has been.

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greypanther
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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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Star_Raider15
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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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pjknibbs
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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.

Gavrushka
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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.”

pjknibbs
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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!

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

Post by Gavrushka » Fri, 19. Nov 21, 20:27

Ah, sorry, yes - I understand. I really do wish you all the best, and hope whatever treatment you start on next eradicates the remainder of the tumour.

Please, if you can, keep us all updated on this thread.
“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.”

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

Post by greypanther » Sat, 20. Nov 21, 00:27

pjknibbs wrote:
Fri, 19. Nov 21, 13:58
it's still far more gut-wrenching to hear it in person than to imagine it.
Oh boy yes. It is so the case about so much in this life. Please try to stay positive, difficult as it is, as to my mind, state of your mind is so important. I too wish you well. :)
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Chips
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Re: Well, what a deeply unpleasant week this has been.

Post by Chips » Sat, 20. Nov 21, 18:24

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.
Sorry to hear that, it's not the sort of news you want to hear. However, the positive is that there remains treatment options by the sounds of it, so here's hoping.

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

Post by pjknibbs » Wed, 24. Nov 21, 18:30

Been to see the new doctor about the new chemo. The basics seem fairly simple--two chemo sessions 3 weeks apart, then a PET scan to determine how well I'm responding to the treatment. Next comes the fun part. If the PET scan shows I've responded well then I have to have a *FIVE WEEK* hospital visit during which they extract stem cells from my blood, give me an intensive 5-day chemo session, then put the stem cells back in to speed up the recovery of blood and bone marrow. Really, really not looking forward to that! I guess I really need to get a better laptop that I can actually do a bit of gaming on else I'll be climbing the walls by the end of the first week...

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

Post by Gavrushka » Wed, 24. Nov 21, 19:15

pjknibbs wrote:
Wed, 24. Nov 21, 18:30
Been to see the new doctor about the new chemo. The basics seem fairly simple--two chemo sessions 3 weeks apart, then a PET scan to determine how well I'm responding to the treatment. Next comes the fun part. If the PET scan shows I've responded well then I have to have a *FIVE WEEK* hospital visit during which they extract stem cells from my blood, give me an intensive 5-day chemo session, then put the stem cells back in to speed up the recovery of blood and bone marrow. Really, really not looking forward to that! I guess I really need to get a better laptop that I can actually do a bit of gaming on else I'll be climbing the walls by the end of the first week...
Firstly, I hope everything goes as well as possible, which I am sure it will.

Sounds like it's some potent stuff you're gonna be getting, and five weeks in hospital (I think that's what you're saying) is a bargain price to pay in my mind.

Wishing you all the best, and if you get fed up of gaming, I'm happy to offer up some book recommendations! :)
“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 Mailo » Sat, 27. Nov 21, 13:02

Also from me my condolences, Gavrushka. I am so sorry. I know how hard it is to have to stand next to a loved one fighting this battle, yet being unable to help in a significant way aside from caring for them.

And keep fighting, pjknibbs! As long as there are options, there is hope. Even fighting it to a standstill can help, as there are new options being developed all the time (the treatment that helped my wife did not exist 5 years ago).
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pjknibbs
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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Fri, 3. Dec 21, 21:32

Well, slightly unwelcome news...I'm due to have my first session of this "super-chemo" on Monday, and I was expecting that to be a regular outpatient appointment, but I've been told today that I'll have to stay in hospital at the very least overnight and maybe for 2-3 days, depending how my kidneys respond to the vast quantity of byproducts that will get dumped into my bloodstream as the tumour cells get killed by the chemo.

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

Post by greypanther » Fri, 3. Dec 21, 22:21

Oh that is daunting, I bet...

At least there is not to long a wait for you to sit further in anticipation. I would also see it as a positive that they are prepared for the worst, after all: Plan/ prepare for the worst, then whatever else happens is a doddle! Isn't it? I hope you at least have reading material ready, because it is very short notice to get a decent laptop. Have you been for a Covid test today? I ask because my wife's uncle is going into Aintree hospital on Monday, always presuming he passes the Covid test he had today!

Anyway, good luck for Monday and try to stay calm and as ever: Be well. :)
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Gavrushka
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Re: Well, what a deeply unpleasant week this has been.

Post by Gavrushka » Sat, 4. Dec 21, 07:54

Best of luck for Monday. Yeah, the doctors won't want to take any chances with your kidneys. Dialysis isn't a lot of fun.
“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.”

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

Post by pjknibbs » Sat, 4. Dec 21, 08:26

greypanther wrote:
Fri, 3. Dec 21, 22:21
Have you been for a Covid test today?
They gave me a test just before I left the hospital today, presumably they'll let me know before Monday if there's a problem.

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

Post by Redvers Ganderpoke » Sat, 4. Dec 21, 10:47

pjknibbs wrote:
Sat, 4. Dec 21, 08:26
greypanther wrote:
Fri, 3. Dec 21, 22:21
Have you been for a Covid test today?
They gave me a test just before I left the hospital today, presumably they'll let me know before Monday if there's a problem.
Good luck Paul.
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Re: Well, what a deeply unpleasant week this has been.

Post by burger1 » Sat, 4. Dec 21, 17:27

The hospital might have some sort of free wifi. There might be tricks to getting it to work. Might be a website to tell you how or the nurses can tell you. Might have to download stuff like netflix, disney, prime video vs streaming it due to wifi quality. Maybe download some stuff prior to the hospital. Some internet sites might be blocked like netflix, etc...? Hopefully someone can bring you some food since hospital food can be bland/unappetizing. If you don't feel like eating theres meal replacement drinks that might be easier to stomach. Also shared room vs private room - headphones? Might also have an iv needle stuck in your hand all the time.

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

Post by pjknibbs » Sat, 4. Dec 21, 18:45

They do have free Wi-Fi, I've used it when I've been in there before. If this treatment all goes well then they're saying they'll have to have me in for five weeks sometime early next year, though...seriously considering buying a better laptop so I can play slightly more modern games, the CPU in my best machine is 8 years old and using Intel integrated graphics!

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

Post by Gavrushka » Sat, 4. Dec 21, 21:54

WiFi in the hospital is pretty good, and I've streamed Sky Go in there (Darlington) on occasion. Can you not just use that Nvidia remote play app to temporarily 'upgrade' your laptops graphic capabilities for the duration of your stay? Seems extreme to invest a lot of money in a laptop for such short term use.

If you're going in for an extended stay, make sure you tell the person you'd like visiting to register with the ward clerk on the day you're admitted. Unless the rules have changed, there was only one visitor allowed per patient, and once nominated, they could not be changed.
“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.”

burger1
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Re: Well, what a deeply unpleasant week this has been.

Post by burger1 » Sat, 4. Dec 21, 22:24

Might also need an extension cord. 6 ft minimum. Might not be long enough if they have lots of machines plugged in. It might create a larger trip hazard if its too short or thick.

Slippers that are slip resistant also. Walking around in socks or bare feet might not be the most comfortable.

You can try Geforce Now but I think there will be too much lag. Theres also Amazon Luna, Stadia, PS Now and Xbox Cloud. Each with its own caveats.

Intel cpus have worse graphics than amd. Amd cpus tend to be buggier.

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