Well, what a deeply unpleasant week this has been.

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

Post by Gavrushka » Sun, 12. Sep 21, 20:12

Yeah, the district nurses did warn me that mum will get far more tired as she moves deeper into the first course of the treatment, with treatment 7 of 28 due in 2 1/2 hours. - Being contrary, one of the main side effects of the treatment is supposed to be epic diarrhoea, but mum has chosen to be constipated... - What's really unsettling at the minute is just how intense the pain is wherever there's cancer. - There was a little area of cancer in her RHS ribs, and that is really giving her grief at the minute. - She does understand that wherever cancer is attacked by the treatment, because so much is just below her skin where the nerves are most prevalent, it's gonna sting big style.

I really hope your scan on the 22nd does show a massive improvement for you, and I think in an earlier post you suggested that's what doctors expect. - The 22nd is when mum next sees Doctor Haney, which is just at the end of this first course of treatment, and we're just coming to terms with why mum didn't get this more invasive treatment 3 years ago, shortly after she was first diagnosed:

Mum saw Doctor Haney soon after seeing the surgeon, Mr Corner, who suggested mum might be suitable for an 'alternative treatment,' but after that meeting it was decided she wasn't suitable. - We found out why last week. - Mum walks with a rollator, and the Doctor has assumed that was because of the heart failure diagnosis from years ago, but never mentioned at the time - never mentioned until chemotherapy became the only viable option last month. - The reason she uses it is because she'd had a fall when outside, and couldn't get back up, indeed became severely agoraphobic and had to have counselling sessions which eventually involved going outside to the place of the fall with a rollator. It's an understandable mistake, but very frustrating at the same time. - There's no blame, no anger, just disappointment at the early missed opportunity.

If it'd been a 7:30am appointment for mum on the 22nd, I'd have reminder the good doctor of the Hippocratic Oath she took... :D
“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 » Sun, 12. Sep 21, 22:11

Gavrushka wrote:
Sun, 12. Sep 21, 20:12
Being contrary, one of the main side effects of the treatment is supposed to be epic diarrhoea, but mum has chosen to be constipated...

Mum walks with a rollator, and the Doctor has assumed that was because of the heart failure diagnosis from years ago, but never mentioned at the time - never mentioned until chemotherapy became the only viable option last month. - The reason she uses it is because she'd had a fall when outside, and couldn't get back up
Weird, I have entirely the opposite issue--they keep telling me how this stuff causes constipation and I just get constant diarrhoea!

That is a bloody weird assumption for a doctor to make. My mother also uses a rolling doohickey to walk, but that's because she fell and broke her hip a couple of years ago, it has nothing to do with her heart attack from some years previous to that!

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

Post by Gavrushka » Tue, 14. Sep 21, 09:49

pjknibbs wrote:
Sun, 12. Sep 21, 22:11

Weird, I have entirely the opposite issue--they keep telling me how this stuff causes constipation and I just get constant diarrhoea!

That is a bloody weird assumption for a doctor to make. My mother also uses a rolling doohickey to walk, but that's because she fell and broke her hip a couple of years ago, it has nothing to do with her heart attack from some years previous to that!
Sounds like they've swapped your treatment with mum's! :shock:

Yeah, I think the first 'diagnosis' the doctor made was around selecting candidates for a trial, and Dr Haney would have seen the last major medical episode, prior to the cancer diagnosis, was heart failure. *IF* it had been brought up, we could have explained, but I think it was more check boxes than a detailed discussion. The doctor is exceptional, and there are no ill-feelings whatsoever. Rollators are awesome. Mum's has a built in seat, and it gives her the confidence to go places that would otherwise be too remote / too scary.

Although mum is mentally struggling (pain and addiction to morphine...) she remains fairly strong as she gets closer to the halfway point of the treatment. - One extra sign is the 'smell' of cancer (god, it was awful) is much less now. - I never realised surface cancer could give off such an unpleasant odour. - Nurses were going to start using charcoal in the dressings, but that may no longer be necessary.
“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.”

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

Post by Gavrushka » Sat, 2. Oct 21, 07:33

Medical science is truly incredible. In latish August, I'm sat numb to my core as the nurse practitioner is giving the end-of-life care talk to mum, and 6 weeks later she's starting her second round of chemotherapy after seeing Dr Haney who has confirmed that the first treatment is 'drying out the cancer.' - Mum has no discernible side effects other than tiredness, coupled with ouchy-stings for the first few days of treatment as the cancer once again gets its backside kicked. - It's still likely that the cancer or the chemo will end her life, but it feels freakingly awesome to live with hope rather than just waiting for the inevitable. - She's even walking now with her stick on occasion, but I'm always nearby with the 'rotavator.'

@PJKnibbs, how did your CAT scan go? Mum asked last week, but I'm pretty sure it'll all have been positive. - One thing that makes us both nervous is having to see the oncologist before each cycle of treatment starts, it feeling like the Doctor is deciding whether the benefits still outweigh the risks, and it felt quite unsettling when she said 'I'm happy for you to carry on with the next round of treatment...' I guess it's essential to do a risk assessment, and review it regularly.

Mum now gets carers visit twice a day too, and one of them, Safi, brought up something that really had me thinking; - She suggested if we'd treated cancer with the same urgency as we did Covid-19, we'd likely have a whole new range of fast-tracked treatments which would improve life for the 100s of millions who are going to face it at some point during their lives. - I don't know if what she says is true, but it's hard to deny that the world seems to be able to move mountains when it's deemed 'essential.'

Hoping you're well on the road to 'cancer-free.'
“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, 2. Oct 21, 09:15

Barring anything urgent I'm not expecting them to give me the CAT scan results until my next regular oncologist appointment on Friday (before my final chemo session Monday week, yay!). I don't have a problem with the oncologist visit, because in my case I know what it's for--since I have lymphoma the chemo pretty directly attacks my immune system, and they need to be sure it's recovered before going onto the next cycle. Sure, that might mean they delay a session, but it doesn't mean they'll stop treatment entirely.

Glad to hear your mother is doing OK, may that continue!

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

Post by BaronVerde » Sat, 2. Oct 21, 13:09

Crossing fingers that the results show substantial improvement !

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

Post by Apothos » Tue, 5. Oct 21, 21:35

Sorry to hear about this, @pjknibbs, hope things go well for you with your treatments.

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

Post by Steel » Thu, 7. Oct 21, 13:08

Just saw this. Sorry to hear about this Paul. My thoughts are with you for a speedy recovery.

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

Post by pjknibbs » Thu, 7. Oct 21, 17:28

Steel wrote:
Thu, 7. Oct 21, 13:08
Just saw this. Sorry to hear about this Paul. My thoughts are with you for a speedy recovery.
Thank you! (And Apothos as well, don't want you to feel left out :) )

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

Post by Gavrushka » Sat, 9. Oct 21, 08:41

pjknibbs wrote:
Sat, 2. Oct 21, 09:15
Barring anything urgent I'm not expecting them to give me the CAT scan results until my next regular oncologist appointment on Friday (before my final chemo session Monday week, yay!). I don't have a problem with the oncologist visit, because in my case I know what it's for--since I have lymphoma the chemo pretty directly attacks my immune system, and they need to be sure it's recovered before going onto the next cycle. Sure, that might mean they delay a session, but it doesn't mean they'll stop treatment entirely.

Glad to hear your mother is doing OK, may that continue!
I hope (and expect) the meeting with the oncologist went well yesterday. Has the tumour fully gone now?

I guess your 'bottled' chemotherapy will be a lot more potent than the 8 tablets a day mum takes, so the goal of yours is to destroy the cancerous tumour, whereas the goal of mum's treatment is to simply do battle with it. - I do need to hear the tumour has been well and truly smited, and there's a brass band booked to play as they slap a canular in your arm for the last time.

Here, it's midway through day 9 of cycle 2 of mum's Capecitabine, and the cancer continues to dry out. - She's now on a small dose of pregabalin (for nerve pain) as the process of cancerous skin being chemo'd has gone from slightly ouchy to a fair bit more stingy. It's a process, and the hope is now building that the drug could be taken long enough to get rid of the cancer before it becomes too toxic for her to take further. (That will be many, many cycles away.)
“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, 9. Oct 21, 13:08

Gavrushka wrote:
Sat, 9. Oct 21, 08:41
I hope (and expect) the meeting with the oncologist went well yesterday. Has the tumour fully gone now?
No, which was a bit disappointing. They said the largest node left is about 3cm, so it's certainly a heck of a lot smaller than it was, but I'd be surprised if the one remaining chemo session Monday was sufficient to get rid of it entirely. However, they obviously need to do a proper PET scan once chemo is done with to get a better idea of exactly what's left, a regular CAT scan doesn't show enough.

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

Post by Gavrushka » Sat, 9. Oct 21, 23:29

pjknibbs wrote:
Sat, 9. Oct 21, 13:08
Gavrushka wrote:
Sat, 9. Oct 21, 08:41
I hope (and expect) the meeting with the oncologist went well yesterday. Has the tumour fully gone now?
No, which was a bit disappointing. They said the largest node left is about 3cm, so it's certainly a heck of a lot smaller than it was, but I'd be surprised if the one remaining chemo session Monday was sufficient to get rid of it entirely. However, they obviously need to do a proper PET scan once chemo is done with to get a better idea of exactly what's left, a regular CAT scan doesn't show enough.
I guess, with chemotherapy being such a powerful drug, they must gauge the course to do it's job over the full course of the treatment, and it does sound like that will be the case. If I recall without checking back on the thread, it was nigh on a foot long when you started, so I'd not be too disappointed. - The oncologist never mentioned the likely need for a further treatment after your intended final chemo session, did they?

I did chuckle at the juxtaposition of the acronyms 'PET' scan and 'CAT' scan. PET sounds like it should be the generic, and the CAT scan only for when you're feline better.

Sorry... :D
“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 » Sun, 10. Oct 21, 07:33

Gavrushka wrote:
Sat, 9. Oct 21, 23:29
I did chuckle at the juxtaposition of the acronyms 'PET' scan and 'CAT' scan. PET sounds like it should be the generic, and the CAT scan only for when you're feline better.

Sorry... :D
That pun was far more painful than anything the chemo has put me through so far. :D

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

Post by Oldman » Tue, 12. Oct 21, 17:10

pjknibbs wrote:
Sun, 10. Oct 21, 07:33
Gavrushka wrote:
Sat, 9. Oct 21, 23:29
I did chuckle at the juxtaposition of the acronyms 'PET' scan and 'CAT' scan. PET sounds like it should be the generic, and the CAT scan only for when you're feline better.

Sorry... :D
That pun was far more painful than anything the chemo has put me through so far. :D

That also made me smile. :)
Glad to read that you're getting better Paul, I pop into the forum now and again to keep up with what's going on here an' stuff. :wink:

Oldman :)

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

Post by pjknibbs » Mon, 18. Oct 21, 12:01

Wow, I feel absolutely miserable today. Went to bed at 6pm last night shivering, and didn't get up until 5:30am. This is by far and away the worst chemo down I've had.

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

Post by BaronVerde » Mon, 18. Oct 21, 12:21

I hope you're feeling better soon !

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

Post by Gavrushka » Mon, 18. Oct 21, 15:28

pjknibbs wrote:
Mon, 18. Oct 21, 12:01
Wow, I feel absolutely miserable today. Went to bed at 6pm last night shivering, and didn't get up until 5:30am. This is by far and away the worst chemo down I've had.
But it was hopefully the last you'll have to endure. Could be the chemo has snaffled the last of the cancer, and for an encore decided to give you a farewell punch in the guts.

Here's to feeling better soon!
“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.”

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

Post by Gavrushka » Fri, 22. Oct 21, 11:04

pjknibbs wrote:
Mon, 18. Oct 21, 12:01
Wow, I feel absolutely miserable today. Went to bed at 6pm last night shivering, and didn't get up until 5:30am. This is by far and away the worst chemo down I've had.
Paul, considering the content of your last post, I really do hope you're recovering and your silence is nothing more than real life distractions. As a carer for someone going through cancer, I do appreciate it can be as much a mental rollercoaster as a physical one.

Post an update when you feel able.
“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, 22. Oct 21, 12:01

I ATEN'T DEAD...

I think part of the reason this has been a particularly miserable week for me is that my idiot doctor didn't put in the prescription renewal for my vitamin B12 tablets when I asked them to several weeks ago, with the result I ran out early this week and have only just got the replacement tablets. Chemo trough coupled to B12 deficiency is not a good combo, especially since both cause reduced red blood cell count. I mean, my doctor wants me to e-mail for prescription renewals so I don't have to come into the practice, but they don't acknowledge receipt of the e-mails and I only discovered the problem when I picked up a different prescription and asked the pharmacy what the progress was on the B12...

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

Post by Gavrushka » Fri, 22. Oct 21, 15:09

Hallelujah! :D

A doctor forgetting such a prescription, considering your circumstances, is unforgivable. - Over the last few months, I've had to spend several hundred pounds buying dressings because the prescriptions (Boots) don't arrive on time, or a breakdown in communication between district nurses, surgery and pharmacy has meant they never got ordered in the first place. - There is something seriously, seriously wrong when either the systems don't work or mistakes are being made with such frequency in the medical profession. - I never deal with doctors for my mum's medications, instead it's a combination of nurse practitioners at the surgery and MacMillan nurses (also nurse practitioners.) Dressings is down to me (thank you Amazon) and the district nurses.

And it's not as if automated repeat prescription routines are new. - In the late 1980s, I helped a surgery in Middlesbrough get their Ciba-Geigy Sponsored Practice Management system get up and running, and that automated repeat prescription generation, 30+ years ago! (Drug companies would install the systems either for free, or at a massive discount, but in return were able to collect data on what had been prescribed each day, but not to whom.)

Here's to your swift recovery, both from cancer and the drugs that knocked the stuffing out of you over the last few months.
“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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