Jump to content
Sign in to follow this  
TR5tar

Your Car or Your Health!

Recommended Posts

1 hour ago, MilesA said:

Even in the much-vaunted NHS, in my experience one often has to push, challenge and cajole to get the appropriate service/treatment.

Don't be afraid to do so - your body, your health.

Miles

What's your definition of "appropriate", Miles?    Your opinion, or that of the ten years-trained, up to thirty years experienced clinician, who reads peer-reviewed journals and takes part in continuing medical education, and is telling you you don't need whatever it is that you think you need ?   Obviously, Im biased!  But there are lots of things, from antibiotics to MRI scans that people think they need, and others that doctors used to think they needed, all of which have been shown to be ineffective, but which people still think they need.

One of the NHS's problem is that it is so short of cash and staff, which means time, and while given time any doctor will be glad to explain their reasoning, when you have forty patients to see in a morning, it has to be, "Next!"    But it will often have explanatory web pages online, eg https://www.nhs.uk/conditions/

John

Share this post


Link to post
Share on other sites

With all due respect John, what a young person with advancing cancer needs is action.  Not delay.  Delay in such a case is surely inexcusable by any measure?

What we have learned as a family is that gaps in a diagnosis or treatment path are rarely for clinical reasons, but result from process/administration inertia in what is a pretty huge and complex system.  We have found that if things "go quiet" (and there is a degree of context here as to what an acceptable gap might be) it pays to give the system a prod.  Consultants secretary usually a good bet.  Having family "in the trade" is very useful, but the information is there for anyone who knows enough to look/ask.

Personally, in my various dealings with the NHS in recent years I have had no need for this as the system has worked very efficiently (apart from notable gaps in the interface between public and private).  My father however...… not so much.  And he refuses to chase as "Doctor knows best".  A strategy that has cost him dear.

As for the changing fashions in diagnosis and treatment paths - I do take your point, but as there doesn't appear to be a lot agreement and consistency in approach between even neighboring hospitals, in some cases it could actually be that a well motivated and thoroughly researched patient might have a better idea of what is going on in the field than some of the specialists he sees...…  You may scoff but in the PCa field at least, there is no shortage of examples.

Share this post


Link to post
Share on other sites

John

I should perhaps not have included the word 'treatment' in that line, although I am not sure it merited quite such a robust response.

I would not presume to assert a contrary opinion regarding treatment proposed by a doctor just as a  solicitor I would hope that clients would have regard to my many years of experience and expertise. I would however, engage with a doctor to better understand his / her conclusions regarding diagnosis, treatment options, timescales, etc., on a serious matter and would have no problem with a client engaging with me likewise.

NIck has better articulated what I was intending to convey briefly, namely that our friend in New Zealand should not be shy of seeking action and a fuller understanding given his circumstances. I am very aware of the pressures on the NHS. It is because like Nick's father I have been a victim of the consequences, again in relation to a material delay in advising of a cancer diagnosis, that I offered the advice and support that I did. 

Miles

Share this post


Link to post
Share on other sites

My sympathy, Miles!   And maybe I was to hard on you!

It is, IMHO, the pressure and case load that makes NHS doctors, and nurses, appear abrupt and unwilling to spend time with patinets, to explian their treatment and ally their fears.   But it is possible to overcome that.   

I was fortunate recently to undergo a 'procedure', cardiac ablation.    I think I've posted about it, but to repeat, It was exemplary.    I saw a Pre-Assessment nurse, a cardiac specialist nurse, in outpatients beforehand.    On admission the same nurse came to see me, followed by a clinician who introduced himself as the person who would do my ablation, followed by the Boss and entourage.   All were affable, unhurried and keen to ask me to ask questions, which I did - I'm no cardiologist!      Not just the cardiac team but the ward staff too - the next morning I wanted a newspaper, and a nurse assistant, who Sister asked if she had completed her tasks, was deputed to guide me through the hospital to the shop and back!   I've been for post-procedure review since, and saw the same specialist nurse.

I could not have had better person handling, let alone treatment, in the finest private hospital.   This was the Blackpool Victoria Hospital Cardiac Centre, and Dr.Gall's firm.    I have written to him, to the ward and to the Hospital adminstration in praise of them all.

If you or anyone else is not so fortunate, yes persevere in seeking explanation, if necessary, asking for an extra appointment.

 

Nick,

The NHS has time limits within which 'urgent' cases should be dealt with.   Of course anyone, young or old wants diagnosis and treatment ASAP,  and when cancer is suspected, "The maximum waiting time for suspected cancer is 2 weeks from the day your appointment is booked through the NHS e-Referral Service, or when the hospital or service receives your referral letter."   https://www.nhs.uk/using-the-nhs/nhs-services/hospitals/guide-to-nhs-waiting-times-in-england/    Your GP is the best person to discuss this with, as they will know what other waiting times exist and will send patients to the hospital with the shortest, within other constraints, like distance. 

I have a persistent cough, and following NHS guidance (three weeks, although its more like nine) I saw my GP.     Even though he knows my background he could not help himself saying, "Antibiotiocs probably won't help!" as so many people think they need them!   It's a defensive reflex!

John

Share this post


Link to post
Share on other sites

GP...... yeah. Right. In these parts it’s a 3 week wait for a phone consultation and pretty much impossible to get a non-urgent consultation in person. Urgent appointment involves telephone lottery on the morning, so start dialing at 8.29 and keep hitting redial until you get through. If you are not through by 8.40 you’ve blown it..... try again tomorrow. If you do get through you may still get triaged out. And they wonder about rising  A & E traffic; really, it isn’t rocket science!

My GP (a notional concept, it’s whomever the locum is on the day) had no involvement with my PCa journey whatever. My original referral to urology was for something else and followed telephone consultation.

Not a poke at GPs as such - it’s the system which is completely broken, and we have successive governments to thank for that.

Share this post


Link to post
Share on other sites

John

Thanks for your response. 

Bit of thread drift here. We all have a clutch of experiences of NHS and views on the causes and solutions. If folk wish to continue that debate perhaps a separate thread could be established and this thread continue to focus on advice and support for chaps experiencing health challenges. 
 

Just a thought. 
 

Miles

Share this post


Link to post
Share on other sites

Nick, anyone,

Yes, GP surgeries have an avalanche of calls every morning.      Visit the practice and you are guaranteed to speak to a receptionist, who are not dragons, IMHO and experience.

Most surgeries are open out of normal working hours.   My appointment to see my GP about my cough was at 1910, yes ten past seven in the evening!      Less convenient than a phone call, but if you have, or think you have, an 'urgent' reason, surely worth the inconvenience?

Share this post


Link to post
Share on other sites

I thought I'd post an update on my situation and then read Rustbuckit's story.  I'm really sorry to here this and good luck with any treatment.  It certainly put's my case into perspective, there is always someone worse off than yourself.

for the record...…………..

Since the original PSA test, I've had another blood test (a month apart) and this came back with a slightly lower reading, down by 0.6

I've also seen a Consultant Urologist who had a rummage and agreed that my prostate is about 50% (volume) larger than 'normal' but felt ok other than that.  Next date is for an MRI scan on Monday to see if there are any 'areas of interest'.

I'll post another update when I have the MRI result and once again, appreciate your comments and support.

Cheers

Chris

 

 

Share this post


Link to post
Share on other sites

Hi Chris,

 when you are in the MRI machine don;t have the head phones with music. Go for the head phones with no music and listen to the machine.

Do Not start tapping your feet.  It is quite amazing.

 

Roger

Share this post


Link to post
Share on other sites

Chris and Roger, how are you getting on? I hope everyone on here is doing their damned hardest to keep away and safe from Covid- keep up the good work!

An update for you all- apologies- it's very long! 

I am laying in bed recovering after my third round of AC chemotherapy. These are essentially a breast cancer drugs, and after my fourth round I will move on to Taxol - which is another. 

A few things have happened since my last post,

First off, this is a much more unusual form of cancer than initially thought. The PET showed something in my left breast -Id like to say pectoral here chaps, but I am a dad and possess the body which naturally comes with that! 

I was sent to The National Womens Breast Clinic which is aptly named if you are indeed a woman, but humbling if otherwise. There I was mammogramed and, eventually at a later date, biopsied and ultrasound.ed.

The thinking is, breast cancer in men is rare- but it is less rare than parotid gland cancer to the degree that it is, in someone my age. So definitely worth checking out as that is where the major advances in treatment have been made. It may mean that my survival rate is very low comparative to the parotid cancer (we are talking 8% against 30% or something equally as disconcerting) but the funding, drugs and specialists are all on your side. Our population does not show salivary gland cancer cases very often- my Onc. has see 5 patients in his career. All very different cases to mine. Offputting isnt it?

The results of all that testing were inconclusive. The spread is fairly significant- and the team of oncologists here are still disputing exactly what the primary location is. Now me, I am in no doubt that it parotid gland cancer. It is perhaps the rarest of all forms of it, and I am again no oncologist- but the travel down through the lymphatic drainage system just makes sense- why the hell would it travel up that against the flow of liquid?

Because the oncologists cant determine the exact primary cancer type- they cannot say it is terminal. So in a very odd way, that makes me quite lucky!

Due to the time it was taking to get anywhere with treatment I put up my hand at any that were offered to me first. Hence this breast cancer treatment. Is it better than nothing? Well, no. 

In the time that it has taken, and even in the weeks that I have been on chemo cycle, the other side of my jaw is begun to flair, and the nodes down that side of my neck and under my arm. So bugger. That tells me this chemo isnt working. It should halt any new spread pretty quickly.

This Covid outbreak is also a bit of quite unfortunate timing. I can still go in to receive chemo, but oncologist- and any other- appointments are carried out electronically, obviously with no physical exam. So the oncologist really has no record of how the tumors are reacting to treatment- only I do. There is a previous PET scan, but it was done some time ahead of my first round of chemo and this appears to be a very, very fast mover so I am dubious at how accurately it will show the spread over the treatment time. 

Some quite good things have happened- it's not all doom and gloom. A good friend of mine started a givealittle page to fund my treatment. Now, I am just a truly terrible reciever. I cant have a friend buy me lunch without feeling sort measure of great discomfort. I love to give, buy rounds, treat dinners- often to the utter dismay of my wife who is much more worried about bank balances. And I wouldn't have - and didnt- allow a page to be set up. But then of course it's not really about me- its about my kids and my wife. So after considering that I was holding back to protect the state of my ego, I thought to hell with it. I had all but  completely hidden my illness- only a few close friends and family know- and you guys. I gave my permission to set up the page, and the outpouring of support and love I recieved- frankly- even as I write this sentence- still makes my eyes well with tears.  

The letters of kindness and ongoing support were really the best thing that anyone could have given me. It is that level of ongoing support that gives me the reassurance that if I dont make it, my family will be looked after- and the feeling that accompanies that- that is indescribable. 

That page has generated enough money for me to look at persuing other opinions and treatment options. 

I have requested another PET scan, scheduled for next week. On the results of this, chemotherapy may halt. My blood is in for genetic testing- if this finds the BRCA gene, which is likely due to family history, my treatment plan changes dramatically. 

I have also sought, and await to receive, a second opinion on diagnosis and treatment from the leading parotid gland cancer oncologist at the mayo clinic in the states. Due to covid I will be unable to go there for treatment, but the hope is to implement it here as much as possible.

But it doesn't stop there-

Another friend works in journalism. She has quite a large influence in what goes to print in one of our leading papers, and organised for my story to be featured. I was not particularly cool with this at all. I work as an actor in real life- but I hate the limelight. And I really cant stand posed photos etc. They are something of a necessary evil in my line of work so I have had to grin and bare- literally. TV and film work I can live with as long as I figure it is the character they are filming- not me. But generally my private life is private. I find flaunting my mortality about cringe inducing- again, the ego.

So my friend had the story angled towards my wife- I didn't have to have anything to do with it- which is very satisfactory.  It made the front page in the Sunday paper. I am under no illusion that with all media attention on Covid, people are hungry to read anything that is about something- anything- else. Again, the outpouring of support from complete strangers is truly astonishing. People really are wonderful!

Beyond this, an Australian news channel is interested in doing a story, which in terms of reaching oncologists there that may be able to help is fabulous.

Also, early this evening I received a call from the head oncologist of a number of departments at Auckland hospital. He had read my story in the paper. He specializes in brain and lung cancers- so his immediate field of knowledge is not in line with being able to attend to my case. But he has asked all the relevant oncologists in other departments, a team of his own, and the genetics team to look over my case in the hope they may be able to offer decisive diagnosis and treatment options as quickly as possible. He has come up with a good hit in an Australian oncologist now working in NZ who specializes in parotid gland cancers. He is calling next week to ask initial questions and set up a appointment to see me after this isolation finishes. Should his treatment plan look promising, there is the option of seeking treatment in Australia where the surgeons etc, would have seen more cases due simply to the larger population base. This is looking promising indeed! 

I'll point out- these oncologists are point blank refusing my offer to pay for their time. Their opinions and help are all offered gratis. I'm blown away, truly, utterly blown away at their kindness. 

Well, that was a slog. I told you it was long! 

Share this post


Link to post
Share on other sites

Sounds like action has well and truly arrived.... really hope it leads somewhere good!

Share this post


Link to post
Share on other sites

Gosh, rustbuckit, thanks for bring us up to date on your story.   Your problems make ours insignificant.

I an not, never was, involved in oncology, but a member of my family was found to have a similarly unusual, but otherwise completely different, tumour.      Something like less than a hundred ever known.    His team called in opinions and advice from all around the world, including world famous scientists, all given freely as they wanted to help.    Because that's the way they work.

I'm glad to say my relative made a full recovery, and I wish you the same.

 

Share this post


Link to post
Share on other sites

Hi Rustbuckit,

Thanks for the update, your case certainly helps us keep things in perspective, as John says.  It sounds encouraging that so many specialists are taking an interest.

My situation is very much 'on hold' for the moment as the result of the MRI was inconclusive.  They give the result a score where 1 -2 is nothing to worry about, 4- 5 is best do a Biopsy.  I'm a 3!!!.  As it happens it wouldn't have mattered what the score was because there are no elective procedures happening at the moment.  So it's another blood test in three months time and see how it goes.

Ironically, the results of my MRI scan were delayed because my specialist caught CV-19.  He is the only person I know who has definitely had it.

Share this post


Link to post
Share on other sites

Hi Folks,

had a surprise phone call middle of last week. It was the young registrar from Charring Cross hospital to tell me that they were starting up their surgery list and wanted

short notice victims.   'When'?  was my immediate question. How about next Friday (15th).

So, Thursday of last week and every day this week I have been running back and forth to the hospital (at least there is no traffic to slow me down) to get this and do that.

So, I go in tomorrow at 7am, operation apprx 9.30am (apprx 4 hours duration) Recover through the PM and then if all is well home on Saturday (probably PM)

I wonder if thy will put it in a pickle jar and present it to me when I go home.

 

Roger 

Share this post


Link to post
Share on other sites

Hi Roger

That's great news (I hope).

If my experience is typical,  you will be very unsure on your feet still by Saturday PM. 

Do not be tempted to eat anything solid for a while; you will be pretty 'bunged up' so don't make things worse (ask me how I know!). Hopefully they will give you something for that in addition to something to minimise blood clots.

Even if they had a spare pickle jar, I think you would just get a lot of thin slices and in any event, they should biopsy all the sections again. Perhaps you will get a DVD instead!

Again, if my experience is typical, you will be very knackered. I found walking every day (starting with a few laps of the hall) and a little further each day (outside) was the way forward.

Best wishes - Miles

Share this post


Link to post
Share on other sites

Robotic surgery? If all goes well you “should“ be in fair shape by Sat PM.

+1 on the laxatives. Some places advise these and even supply a few. Others not. I have even heard of advice against..... Sadistic bastards is my comment on that!

You may also find a “pile cushion” useful for a few days when sitting.

I don’t have it in a pickle jar. It got sectioned.....

Very Best wishes for tomorrow!

Nick

Share this post


Link to post
Share on other sites

That's super news Roger.

Best wishes for tomorrow and a prompt recovery afterwards.

Rod and Diana

Share this post


Link to post
Share on other sites

Thanks chaps.

 

laxatives were mentioned :blink: 

I'm hoping that the robot  manipulator will produce less problems and help with  recovery

 

Roger

Share this post


Link to post
Share on other sites
Posted (edited)

I n general, no one will be presented with the specimen that they were operated on for.    Even if they aren't chopped up for microscopy, the preservatives that can stop a specimen rotting in the jar are toxic!    I learnt jthis at an early age, when I asked if I might have my appendix to take home.     The war sister, with a perfectly straight face, said that a pidgeon had eaten it.

Edited by JohnD

Share this post


Link to post
Share on other sites

All the best, Roger.  Hope it goes according to plan.

Paul

Share this post


Link to post
Share on other sites
3 hours ago, RogerH said:

Thanks chaps.

 

laxatives were mentioned :blink: 

I'm hoping that the robot  manipulator will produce less problems and help with  recovery

 

Roger

From memory (difficult to find them now) 6 little incisions about 1cm each. Way less invasive than the traditional approach.

Nevertheless, its a 4 hour op and its that which knackers you. 

Just take it slow but steady in the 2 - 4 weeks after, and  you will be fine!

Miles

Share this post


Link to post
Share on other sites

Hi Folks,

just come of the phone form the hospital.   I had a CT scan of my lungs to check for covid-19 and the specialists have found something that may cause the general anesthetic to go crackers.

So the op has been cancelled until i have had speaks with the Oncologists.

 

Annoyingly it is only the Covid that required the CT scan. Otherwise i=the ct scan would not have been done and the op would have gone ahead.

 

Bugger

 

Roger

Share this post


Link to post
Share on other sites

Sorry to hear that the op has been postponed Roger. Hope it'll be back on track soon. 

Best wishes, Darren

Share this post


Link to post
Share on other sites

What a disappointment, Roger!    But better now nthan on the day - that's what 'pre-op. assessment' is about.

Best wishes,

John

Share this post


Link to post
Share on other sites

What a shame, that must have made the day a bit of an emotional rollercoaster I would imagine.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×
×
  • Create New...