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User
Posted 01 May 2020 at 04:10

Why can I not post here. What is admin doing. Why has this site become so user UNfriendly. Should we all leave and form a new one which works?

Edited by member 01 May 2020 at 10:09  | Reason: Not specified

User
Posted 02 May 2020 at 12:07
As you well know, some doctors are all doom and gloom while others gloss over things and are unrealistically positive.

You just keep on doing what you are doing in your usual style.

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

User
Posted 02 May 2020 at 12:22
Keep fighting Barry. However forgive me if this comes across wrong. But I don’t think it’s reasonable to compare the medical staff who are treating you to people who were responsible for the holocaust. I’m pretty sure those staff are pretty stressed out at the moment due to Covid-19 as are our NHS staff

Take care

Bri

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User
Posted 01 May 2020 at 10:54

No, I send new posts for approval and they do not get posted. I received ACCESS DENIED messages,

so, here is what I intended to send as this seems to be working. Admin, get your arse in gear please, I don’t have time for delays and want to help people as much as I can which is the whole bloody point of this forum.

 

A close shave with death

Years ago, Sunday afternoons used to be a time of sheer relaxation and enjoyment for me. Fast forward to my middling years and they, or rather one Sunday in particular was a hair-raising dance with death. Let me explain.

Picture the scene. I wake with serious and I mean the most serious pain in my left bottom rib. It’s not for any other reason than my cancer, probably bone metastasis but it also could be swollen lymph nodes. Anyway, throughout the day, hot water bottles, my usual efficient TENS machine and a frequently increasing frequency and dosage of Morphine were failing to address the pain. On a pain scale of out of ten, I can honestly say hand on heart that these regular waves of pain were approaching 20 out of ten. Intense, ouch, just doesn’t cut it.

We both went upstairs around 3.30pm to watch TV on the PC to take my mind off of things but no amount of distraction would alleviate the pain. By 5pm, in agony and with a scale of 30/10, I asked my darling wife to take me into the local emergency room of the Claude Bernard Hospital, Albi.

The previous experience there had not been a pleasant one and so I was on guard from the moment we arrived. A scan was done which advised that both my kidneys were failing, the creatinine  levels were rocketing skywards around 40 and a normal human body was unable to deal with these - so it was decided to send me to my usual urological hospital again in Albi named Toulouse Lautrec by ambulance.

The handover was deeply traumatic for me because of the language issue and also because due to the Covid 19 no visitors were allowed, under ANY circumstances. Luckily, I’d brought my phone and was able to spend (in the entirety of my stay) £77 on phone data credit to allow me to while away the what would eventually be the next five days watching British TV.

The care in T Lautrec hospital is peerless. Sadly, despite its reputation and France’s for producing knock out food, the manger there was dire. Indeed it was shite. Right, let’s get back to the kidneys. Told that both of mine were failing, the left one had a JJ stent in it placed there last October which had now become defective. To me, it was most probably the cause of the high creatinine levels. The right kidney had swollen in size, cause unknown but I was told that a stent in that kidney was out the question due to the urethra and swelling. Option 1 and all was a replacement stent for the left and time out on the right kidney. Decision made, I went straight down to theatre where a anaesthetist who more than resembled Heinrich Himmler and who had the real name of Dr Allemand (Germany) attended to my anaesthetisation. Dr Germany walked, nay shuffled slower than a penguin on Mogadon. In fact he looked so old, he could well have been Himmler in a surgical gown! It was most off putting.

Frightened to the hilt, German man firmly placed the mask over my nose and mouth and knowing I was English and couldn’t speak a word of French, gave explicit instructions in French of what I should do next. I had to guess so started breathing deep and counted down from ten. Having reached six, I was under and in about an hour, found myself in recovery which I have to say was a much more pleasant experience.

Back to a private room, yes the French do do healthcare in style, I awoke and watched TV all night on my phone. In the morning, I had my bloods taken. In spite of my hopes that the defective stent being replaced would mean a much lower creatinine count, I wS shell shocked to note it had gone up, considerably, to 65! At this rate, I would be dead soon. In my little room in France with limited view over industrial rooftops and without the hand or love of my wife to wish me on my way because Covid does this to people, I started to panic.

My surgeon, realising that something had to be done ordered an immediate échographie (I don’t know the English equivalent) and it was suggested that although they still didn’t know the cause why it had swollen, unless cancer had infiltrated it, I should try and reduce the swelling by nephrostomy. I knew this would mean an external bag but if it meant more time with my wife, I didn’t care. Prepared for theatre again by a couple of specialist nurses (French hospitals have a nurse for this and a nurse for that) I was whisked down to theatre again, this time by a fluent English speaking nurse called Dominic. It was sheer bliss being able to communicate what I wanted and all my fears and queries as he was able to articulate these back to the other staff involved in the op. Sadly, despite this, all my surgeon’s bedside manner consisted of was to do in answer to my question, “what if my creatinine levels do not fall), make a knife across the throat gesture and say “Mort!” It was so sickeningly off putting, I nearly got up before Heinrich Himmler slammed the oxygen mask over my face again!

You see, in France, surgeons, doctors are very different to the UK. Often heavy smokers, they dress completely casually for work - jeans, T shirt and do not like being questioned by patients. In France, patients have no right to kindness or service and the surgeon knows all. Ask about your own care and they see it as an affront to their professionalism. Still, I didn’t have no options so put up and shut up.

The long and the short of it was that after surgery, my creatinine fell but only a few points, my surgeon explained to my French speaking translator friend that I had days left (this was subsequently changed to weeks then possibly months - and I left hospital after two operations and  five day stay. To say that holding my wife again and sleeping in my own bed was amazing would be an understatement. So, post op care will be a GP visit on Sunday at home, home nurse on Monday, bloods every week and in three weeks, I will return to hospital for a scan to see whether the right kidney has shrunk sufficiently to negate having to use a nephrostomy bag. I don’t care, I just want to be alive.

My queries to those with experience of kidney failure is how the prostate disease spread works in the failure of kidneys, what it does, treatments that may work (the surgeon has said dialysis is out of the question so is transplant (this is France after all). Why, despite my urine being clear, me processing lots of fluid a day and having a healthy urine output, is my creatinine is not falling substantially. Answers on a postcard would be very gratefully receive .

Thank you

Bazza - Barry

 

 

 

 

 

 

User
Posted 01 May 2020 at 17:31

My goodness Bazza. That all sounds scary to say the least. Thanks for posting. Hope you are in much less pain now.

Glad you are home with your wife.

Ido4

User
Posted 01 May 2020 at 19:41

Bazza

Sorry it can't answer your question, I do have CKD3 but have never had kidney issues. Sorry to hear where you are at but glad you have still got a sense of humour.

Take care and keep going.

Thanks Chris.

User
Posted 01 May 2020 at 22:51
Kidney failure can be caused by the treatments you have had, by PCa spread to the kidneys, by calcium deposits caused by bone mets, by too much uric acid in the kidneys caused by the chemicals produced in cancer cells or, more commonly for prostate cancer patients, by the inability to empty the bladder properly as the tumours grow in that area and block the urethra. Your odema could be putting increased pressure on the kidneys, or the kidney failure could be causing the odema - it's hard to tell from what you have said.

Even if you were in the UK, you would be unlikely to be suitable for dialysis or transplant because neither would treat the underlying cause, which is your advancing cancer.

Fingers crossed that the scan in 3 weeks shows some improvement, and very pleased that you have managed to get home in the meantime. Lots of love to you both, Lyn xxx

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

User
Posted 02 May 2020 at 09:14

Thanks Lyn

i simply refuse to believe that I have days or even weeks left. I feel ok. Weak, thin but ok and with much more energy since the nephrostomy. I will not be cow towed by these effing surgeons!

User
Posted 02 May 2020 at 12:07
As you well know, some doctors are all doom and gloom while others gloss over things and are unrealistically positive.

You just keep on doing what you are doing in your usual style.

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

User
Posted 02 May 2020 at 12:22
Keep fighting Barry. However forgive me if this comes across wrong. But I don’t think it’s reasonable to compare the medical staff who are treating you to people who were responsible for the holocaust. I’m pretty sure those staff are pretty stressed out at the moment due to Covid-19 as are our NHS staff

Take care

Bri

User
Posted 02 May 2020 at 12:55

Lighten up Bri. It was a humorous interpretation of a man who genuinely resembled Mr Himmler and who genuinely had the name Dr German. As one who has been once married to a Jewish wife for 34 years, I can tell you there isn’t an ounce of anti semitism in my bones, if that was the thrust of your reply. I have for ten years on this forum always spoke my mind and always spoken the truth. I will continue to do so. 

User
Posted 02 May 2020 at 14:54

Hi Barry

Sorry to hear about the horrendous and frightening experience you have been through. What a nightmare, with the Covid situation and language barrier an added stress in your situation.

Good to know you are now home with your wife and still fighting.

Good luck with your scan and very best wishes to you both.

Angex

User
Posted 02 May 2020 at 17:42
I just pray you have loads more time with your beautiful wife and relish every second. Ten years with our prognosis is good and you’ve lived every second of it and gone with your gut. Best wishes
User
Posted 02 May 2020 at 19:03

Hi Bazza

Tony has CKD5 his creatine level at the moment is at the moment 560 mmol/1, he is not yet on dialysis. I have looked up normal levels and they are between 60 and 120. according to the kidney site (UK official one) less than 60 is a very small person or a child. Tony cannot have a transplant as he has active cancer  his egfr is 8 and he has been told they will start dialysis when he is at 7% . I do not know if thy measure it differently in France but if it is the same as England you are at a normal level. Hope this helps.

 

Barbara x

User
Posted 03 May 2020 at 07:55

Sorry to read of your latest rubbish situation. No idea how I will cope with whatever gets thrown at me when it dies but your posts have made me realise I need to make sure I go downhill in England when it’s time.

rooting fo you,Kev 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 03 May 2020 at 12:39
On the Continent Creatine is measured in mg/dL and the normal range is between 0.67 and 1.17.
User
Posted 03 May 2020 at 13:26

So you can see why a count of 65mg/dL might worry doctors!

User
Posted 03 May 2020 at 14:55
Hi Again Bazza not sure how to convert that to the way Tonys is measured I no the highest his has been is 659mmol/1, think I have just managed to do it and yes yours is very high if I have done it right I make it 5746 wow.

hope you get it sorted good luck and stay strong.

regards Barbara

User
Posted 03 May 2020 at 15:11

No, before leaving hosp it went down to 59 mg/dL

User
Posted 03 May 2020 at 16:37
Hi Bazza,

I’ve had a kidney stone blocking my left urethra tube since December, they had 3 goes at bombarding it via ultrasonics in January, unsuccessfully. They then decided on a laser op to break it up. I was supposed to have this op at the beginning of March, but the closure of the hospital to only Covid-19 cases put a stop to that.

I’m pleased to say that during the past few months my Creatinine level has been between 0.73 and 0.88 mg/dL. which has been pretty normal for me going back years. I’ve been having a blood test every 3 weeks due to being on chemo. Fortunately the hospital continued to treat chemo cases. Lucky for me.

The thought of going through what you have been through gives me the willies. I just can’t imagine the pain.

Sorry I can’t offer any advice.

Cheers Stu

User
Posted 04 May 2020 at 08:16

Hi Bazza,

Please can I ask that you ensure you choose a topic and confirm the topic BEFORE you try and post your new message.

Please let me know if the access denied problem persists for you even if you have chosen and confirmed your message topic.

Best wishes,

Carol

Digital Manager
Prostate Cancer UK

 

 

User
Posted 04 May 2020 at 16:10

Yes, still the same

 
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