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Worry about meeting the consultant on Monday

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User
Posted 19 Mar 2022 at 11:22

No, when getting anything new: medicine, TV, car, electric drill... Open box, use item. Leave instructions in box or unopened on table. In six months time find button or feature and say "I never knew it did that".

Dave

User
Posted 21 Mar 2022 at 09:32
I have read in one of the threats that the gent in question recons the current available treatments are bearable.

I know that is a very English reaction, but it is the wrong reaction. Why would anybody want to make improvements to the available treatments if the patients are happy with the current standard?

There is only one way to get improvements, complain, complain and complain again. And then complain some more.

Think about this - would you be happy for your son/grandson to go through the current available treatments?

User
Posted 21 Mar 2022 at 10:49
You are not being reasonable. It isn't possible for all cancer treatments to be pleasant.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Mar 2022 at 10:50

Originally Posted by: Online Community Member
Think about this - would you be happy for your son/grandson to go through the current available treatments?


Yes, entirely happy. I'm not just pretending that it was all very tolerable; it really was!

What good would complaining do? It's not going to change anything, and is unfair to the hard-working medical staff who are doing their very best to treat you. 

Cheers,

Chris

 

User
Posted 21 Mar 2022 at 11:11

Originally Posted by: Online Community Member
... Why would anybody want to make improvements to the available treatments if the patients are happy with the current standard?

There is only one way to get improvements, complain, complain and complain again. And then complain some more...

Well they are improving the treatments certainly in effectiveness if not primarily in tolerability. So the system is working currently.

Dave

User
Posted 21 Mar 2022 at 11:33
Hello DW. I’m not sure what you are expecting. As a cancer survivor myself, the treatment is doable. Not pleasant at times, but far better than the alternative. The cancer pathway in the NHS is Gold standard. If I was you I would start to look at the positives rather than the negatives. Your husband has options to treat his cancer. Some don’t.
User
Posted 21 Mar 2022 at 12:48

So who should we complain to - God, for allowing cancer? The government? The NHS? Drugs companies? The hospital providing treatment? The consultant? The GP?

And what should we complain about? The fact that radical prostatectomy (which counts as major surgery, keyhole or not) has certain unpleasant and unwanted side effects? That hormone therapy using powerful drugs has side effects? All drugs have side effects. That electron beam therapy can cause some unpleasant after-effects? Hitting a part of the body repeatedly with high-energy tightly focused  X rays will do that!

This forum exists to provide information, advice  and support from those suffering from prostate cancer, or being investigated for it, and for their relatives. How does your most recent post do that? 

Hermit.

User
Posted 21 Mar 2022 at 13:03

I agree fantastic work by all at our nhs hospitals keeping us all here off course not pleasant at times need to be ruthless at times to try to cure but my weekly visits to the cemetery  a reminder how greatful we should be off the tenacity and the fantastic care provided by our nhs I for one is truly greatful 👍

User
Posted 21 Mar 2022 at 13:41

I know that not all cancer treatment is comfortable, but if we encourage the researchers to come up with better ways and NICE to approve the better ways and drugs that keep people alive then our sons might have more pleasant forms of treatment to look forward too

 

User
Posted 21 Mar 2022 at 13:43

not complaining about the hard working medical staff, just letting them know as without people telling them they cannot pass the information upwards etc.  you cannot expect them to read your mind. 

User
Posted 21 Mar 2022 at 13:45

Hi JaneyP, how can the medical staff know if there is any problem if we/you do not let them know?  They are doing their best, but we need to help them by giving them all the information

User
Posted 21 Mar 2022 at 13:48

Dear Hermit,  as I said before, we need to let the medical people know how anybody feels as they cannot be expected to read minds.  If something hurts, tell them.  If something is bothersome, tell them.  They then can either alleviate the problem or pass it on until somebody comes up with a solution.  

User
Posted 21 Mar 2022 at 14:02

Do you imagine that men being treated for prostate cancer do not talk to the medical staff? Do you think that we 'do not give them all the information ...? Do you suppose that the medical staff (from the nurses all the way up to the consultants) don't ask questions of their patients, and act on the responses? When I was having bowel problems after radio therapy I 'complained' (well, actually I told the consultant) and was prescribed a cortico-steroid foam which helped to solve the problem. In some case, though, there is no 'solution'. Hormone therapy can make you very emotional. Radio therapy makes you tired. Prostatectomy brings incontinence, at least initially. You live with it. In my experience, staff will do all they can to help answer questions and resolve problems. In my case, the senior nurse practitioner on the team called me unexpectedly on Christmas Eve for no other reason than to ask how I was getting along. That's what I call caring ...

Hermit

Edited by member 21 Mar 2022 at 14:16  | Reason: Not specified

User
Posted 21 Mar 2022 at 14:04

Originally Posted by: Online Community Member

Hi JaneyP, how can the medical staff know if there is any problem if we/you do not let them know?  They are doing their best, but we need to help them by giving them all the information

You are at the very start of your journey but just to reassure you, when men see their urologist, oncologist or clinical nurse specialist (if they have one), most go through the PCa quality of life questionnaire (FACT-P) on a regular basis. That is how BAUS is able to publish the data on likelihood of side effects from the different treatments. 

https://bmjopen.bmj.com/content/6/12/e013555

 

https://www.england.nhs.uk/wp-content/uploads/2021/11/Cancer-quality-of-life-survey-summary-report-first-data-release.pdf 

Edited by member 21 Mar 2022 at 14:10  | Reason: to activate hyperlinks

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Mar 2022 at 18:15

Hermit, I am glad to hear that you are able to talk to nurses and consultants and that they are looking after you properly.  Hopefully that applies to everybody having to deal with this horrible disease.

User
Posted 21 Mar 2022 at 18:30

Hi LynnEyre, OH has last seen the urologist when he was given the official diagnosis 21st Feb, he had an appointment with the onco 1st April, that has been moved back to the 8th of April, he has not got a clinical nurse specialist, it is a team and he cannot just ring them, can only (if lucky and the phone is not off the hook) leave a message and they ring back eventually.  This will not change once treatment starts, if he has a problem not covered by the book we will have 2 options - 111 or 999 if it is really urgent.  The nearest he got to a QoL question is when he saw the surgeon  and got told that if he was incontinent several weeks after the OP he would be referred to a nurse and if after taking Viagra for 3 month without success he would be referred as well.  

 

User
Posted 21 Mar 2022 at 19:47
You seem very angry; perhaps a bit understandable but isn't going to help in the medium to long term. The FACT-P questionnaire is used with men who have had treatment, obviously that doesn't apply to your OH yet.

It is a team at the moment because OH hasn't chosen his treatment. Once he has decided which treatment he is going for, you will know whether to contact the urologist's secretary or oncology team with any problems.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Mar 2022 at 19:56

Not 'nurses'. I have one who contacts me routinely to (e.g.) tell me my latest PSA score. She is the one who called Christmas Eve. Not 'consultants'. I am under the care of one (named) consultant urologist, although I have been seen by others on his team. If I have a question or a problem, I call the nurse practitioner or the consultant's secretary. Both are busy people - so I just leave a message and they get back to me.  I expect that is how it will be for your husband, once he has chosen which treatment route he wants to follow. Don't start to worry about 'what if ...'. Just deal with things as they arise. And prostate cancer isn't the sort of thing which would ever lead to a 111 or 999 phone call.

Edited by member 21 Mar 2022 at 20:02  | Reason: Not specified

User
Posted 21 Mar 2022 at 23:34
I have an absolutely brilliant cancer nurse who I can leave a message for at any time and she calls me back within a few hours. Really couldn't have asked for better treatment or kinder or more considerate medical staff. Previous posters are spot on about communication. When I was having my RT the nurses asked me every day how I was feeling and if there was anything I needed to talk about.

I honestly would wait until husband starts whatever treatment it is he decides on before forming judgments about quality of care. I am 100% satisfied with the care I received.

Cheers,

Chris

User
Posted 22 Mar 2022 at 00:12

Yes, I would of course use the words bearable and tolerable, but that's because we have cancer and any treatment needs to be aggressive, it has to kill the cancer but not kill the patient. But the staff do a good job they ask questions, etc. and if you read my posts you will often see me praising the food at the Christie, in fact the Key Lime Cheesecake is positively to die for.

Dave

 
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