Well, what a deeply unpleasant week this has been.
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Re: Well, what a deeply unpleasant week this has been.
How is it different?
Re: Well, what a deeply unpleasant week this has been.
The treatment? It uses antibodies directly rather than T-cells. Beyond that I don't know--it's obviously not as effective as CAR-T, because the NHS wouldn't have spent hundreds of thousands on that if this other treatment was better!
Re: Well, what a deeply unpleasant week this has been.
Hope the treatment in October reacts positively and you have a net gain. In my thoughts.
Re: Well, what a deeply unpleasant week this has been.
What is it with Christie and communication? Just came in for what I thought was a regular bloods appointment and was told by the doctor that he'd planned to bring me in for an actual stay--3 days 2 nights. Which I immediately shut down, because not only was I not going in on such short notice, I had no intention of going back in *at all* after having been there for three months! So it's going to be redone as an outpatient thing, which is what I always thought it was supposed to be in the first place. Only problem is I'm now stuck in the waiting room waiting for them to check dates and also order me some co-codamol from the pharmacy to supplement the paracetamol I already have, becausse that's not really cutting it anymore so far as pain relief is concerned.
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Re: Well, what a deeply unpleasant week this has been.
It's not just there, but all over the NHS if you ask me. I have a hernia, was referred to a surgeon, who did not explain the risks properly at all of the operation, ( they are pretty dreadful, ) did not give me any option of a local anaesthetic, which he is supposed to, worse of all, whilst he is a consultant general surgeon, he specializes in breast surgery! Am I letting him near my groin with a scalpel? Not a chance! He even flatly refused to answer my questions, after I found out elsewhere about the risks. His junior associate eventually did answer them, when pressed on the phone. Without a private clinic and the internet, I would have been ignorant of the risks. I am probably going to attempt to go private in London.pjknibbs wrote: ↑Mon, 26. Sep 22, 12:12What is it with Christie and communication? Just came in for what I thought was a regular bloods appointment and was told by the doctor that he'd planned to bring me in for an actual stay--3 days 2 nights. Which I immediately shut down, because not only was I not going in on such short notice, I had no intention of going back in *at all* after having been there for three months! So it's going to be redone as an outpatient thing, which is what I always thought it was supposed to be in the first place. Only problem is I'm now stuck in the waiting room waiting for them to check dates and also order me some co-codamol from the pharmacy to supplement the paracetamol I already have, becausse that's not really cutting it anymore so far as pain relief is concerned.
As for co-codamol and pain, be careful because I am well aware of that drug and how ineffective even that is. It also contains paracetamol, so taking with ordinary paracetamol is a big no no. You do not want paracetamol poisoning on top of everything else! Also, I doubt they will tell you, but it will make you constipated, which they should tell you, but they didn't me and the constipation can be truly dreadful.
Have you had any contact with Marie Curie or Macmillan? If not it may be worth a try for the pain relief at the very least. You should not have to put up with that. They were very good for my father.
Do not let them fob you off about the pain, because in my experience, the ordinary NHS will.
Pray that there's intelligent life somewhere up in space
'Cause there's bugger all down here on Earth
'Cause there's bugger all down here on Earth
Re: Well, what a deeply unpleasant week this has been.
Fully aware it's got paracetamol in it, and if it doesn't work I assure you I'll be asking for liquid morphine. It's not that the doctor is withholding information from me, it's that the communication outside actually talking to him is terrible--for example, when I got home after this session I found the letter on my doormat telling me I'd been booked in for inpatient ward 2 this morning! It's like the admin staff there believe that mail magically teleports to its destination with no delay, or something.
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Re: Well, what a deeply unpleasant week this has been.
I did guess you would know, it would be a bad doctor/pharmacist who did not make you aware. I just wanted to be sure. According to my pharmacist, ( and my senior nurse sister, ) it is shocking how many people are not aware of its presence. Even when aware, it is shocking they say, how many ignore the advice. Though then again, maybe not, as pain is a terrible driver.
I wish all doctors were open and forthcoming, but they are most certainly not in my experience. I have also found admin in the NHS to be generally poor. From missing files to messed up appointments.
There are pain management departments, in case you have not been made aware of them. The Walton Centre has one for starters. Marie Currie/Macmillan nurses are also excellent, for all things surrounding cancer and pain.
Sorry if you already know all this, just trying to help, not annoy.
I wish all doctors were open and forthcoming, but they are most certainly not in my experience. I have also found admin in the NHS to be generally poor. From missing files to messed up appointments.
There are pain management departments, in case you have not been made aware of them. The Walton Centre has one for starters. Marie Currie/Macmillan nurses are also excellent, for all things surrounding cancer and pain.
Sorry if you already know all this, just trying to help, not annoy.
Pray that there's intelligent life somewhere up in space
'Cause there's bugger all down here on Earth
'Cause there's bugger all down here on Earth
Re: Well, what a deeply unpleasant week this has been.
I'll second this from personal experience. MacMillan are amazing.greypanther wrote: ↑Mon, 26. Sep 22, 20:45...
There are pain management departments, in case you have not been made aware of them. The Walton Centre has one for starters. Marie Currie/Macmillan nurses are also excellent, for all things surrounding cancer and pain.
...
What I really am surprised at, Paul, is you haven't been given access to Oramorph as 'rescue' relief. I think the simple truth is you have to be quite vocal.
And, yeah, I agree with no more admissions unless they really are unavoidable. But please don't put off arrangements for the time ahead where you may be potentially unable to cope without more help than a carer/ regular nurse visits can manage. - Again, personal experience speaking. - I did (for mum) and it's the one thing I regret.
“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.”
“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.”
Re: Well, what a deeply unpleasant week this has been.
I've had my first dose of the co-codamol and I've actually found it extremely effective--took it around 8pm and have slept for nearly 5 hours straight, which is by far and away the best sleep I've had in over a week. I don't intend to take more than one dose a day because obviously there's the addiction risk, though.
Re: Well, what a deeply unpleasant week this has been.
Made me chuckle
Glad its effective for you. I once took it and after 2 days I was physically sick, so it doesn't agree with me and stopped.
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Re: Well, what a deeply unpleasant week this has been.
I don't know whether to laugh or cry. Maybe both. I mean, in the circumstances...
I can't breathe.
- George Floyd, 25th May 2020
- George Floyd, 25th May 2020
Re: Well, what a deeply unpleasant week this has been.
I should have said in case its not a familiar to other readers - appreciation of "good old dark humour"
Also that taking the min until otherwise required may well avoid side effects *if* you're susceptible to them.
Hope you're managing to get do things you would like to - and speak up if something you'd like but currently can't. I mean costs nothing to say, and who knows.
I ended up watching Fred Astaire's back catalogue with my father. Simple things but we both enjoyed immensely
Also that taking the min until otherwise required may well avoid side effects *if* you're susceptible to them.
Hope you're managing to get do things you would like to - and speak up if something you'd like but currently can't. I mean costs nothing to say, and who knows.
I ended up watching Fred Astaire's back catalogue with my father. Simple things but we both enjoyed immensely
Re: Well, what a deeply unpleasant week this has been.
Well, latest round of unpleasantness. I was supposed to be having chemo today (second dose of the palliative chemo they're trying), but turns out the ulcer in my groin on top of the tumour has become infected and so they have to deal with that first--which involves taking me into hospital. Again. Spent over three months in this place already this year, really don't want more. And I'm currently stuck on a particularly hideously uncomfortable seat in the AACU unit waiting for a bed in a proper ward...
Re: Well, what a deeply unpleasant week this has been.
Hopefully it doesn't take days to get a bed. They can't just call you and you get a cab to the hospital? And hopefully you brought your tech and they have charging areas or wall plugs available. They give you an ETA on when a bed might be free?
Re: Well, what a deeply unpleasant week this has been.
I can only hope and pray they get the infection under control quickly and you're now on a ward as I write this, but only for as short a time as possible as is medically possible.
“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.”
“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.”
Re: Well, what a deeply unpleasant week this has been.
I was already in the hospital, chemo? And I have tech with me but no chargers, so will have to get someone to bring those in for me if this lasts more than a day or so.
On a ward now, just awaiting breakfast.
[EDIT] Being sent home with a round of antibiotic tablets, thankfully, just got to wait for the pharmacy to dispense them. Probably won't leave here much before 6pm, but I've been dozing most of the day (not enough battery on the laptop to make good use, 19% and dropping!) so won't need a particularly early night.