Leo Robot spares some nerves

Another 3 months have elapsed, but not a lot has changed. My blood was extracted in the tent outside my GP's surgery by the same nurse wearing the same "Darth Vader" mask.

A week later I received another phone call from the Clinical Nurse Specialist telling me not to bother turning up to my pre booked appointment with my consultant. My PSA is unchanged at 0.1, so once again nothing is to be done other than another PSA test in 3 months time.

By way of a change I was also informed that since Treliske already had a sample of my blood I had been randomly selected to receive the added bonus of a Covid-19 antibody test. That was negative.

Which reminds me that I've been waiting for an appointment for a CT scan at Derriford for 3 months or more. By way of another change that's for my heart and lungs rather than potential mets.

Hi Lyn,

My fingers and other appendages are currently all firmly crossed, in the hope that your "new normal" theory is correct.

I've also finally received my appointment for a CT scan at Derriford Hospital in Plymouth at the end of the month. Chest not lower abdomen!

Jim

Hi Jim,

Well, by the time the quacks had performed a zillion scans and still couldn't find any mets to explain my initially sky high PSA reading I was suffering from lymph node involvement and perineural invasion. Leo managed to remove several nodes whilst sparing my main nerves but despite his best efforts I was left with a positive margin of 1.6 mm.

Currently my regime seems to be keeping my opponent at bay, and I like to think that the solution to the problem is at least as much "mental" as "physical".

Paraphrasing only slightly, please don't let the b****** grind you down! 

The other Jim

P.S. I seem to have fallen foul of the PCUK rude word police. My apologies!

Edited by member 01 Aug 2020 at 10:26  | Reason: Not specified

Hear, hear Lyn!

I was on the point of pinging the PCUK powers that be.

Except I don't know how!

Jim

oh dear!!! To all people on this site.

My heart goes out to each and everyone of you and anyone else who has had to go through the awful journey cancer takes us on.

Maybe I am passionate about spreading my uncles and my whole family's story (as cancer pulls us all in, does it not?), and maybe my approach was wrong. But it was and always will be from a good place.

We went from hopeless to hopeful to a miracle and I will never play down our experience as a family.

If someone had not been brave enough to suggest something to my Uncle which may not have been what's considered the 'Norm', my Uncle would not be here today and that is a fact.

Your messages will always get thru and I feel it's important for people to be able to discuss especially such a painful topic that is responsible for taking beautiful people from us way before their time.

I am NOT selling ANYTHING, neither am I a spammer.

I am a normal person trying to be a good husband, father, friend, definitely Nephew etc and I care immensely about this subject and what information is out there for people like me to be able to research and share with people like you.

Whether we agree or not, surely is not important. Is not sharing our experiences the way forward? Does it matter that we have different experiences? If you had a good experience, would you not want to share it with other people that may also be suffering?

Considering that cancer is rifer now than ever (1 in 2 male or female currently as we all know) is it not our duty to be doing our own research to try and help other people including the amazing people in the medical community, or do we like sheep keep our heads in the sand and our fingers crossed that it does not happen to us?

It did happen to us and we did have our heads in the sand and had never bothered to educate ourselves on what is quickly becoming the biggest killer.

We now as a family have self-funded our own research into cancer prevention and cure, we realized that we have access to all the same information that the professionals do. It's in the public domain. There are literally thousands of people across the world that are doing the same and we have been privileged to connect with many like-minded people. 

I will again apologise for my approach, my wife always says I am like a bull in a china shop.

But I stand by everything I say as I can back it up and have done for the last few years on a regular basis.

Whether you believe me or not I genuinely care about people in general and all of you that may have or currently are gone/going through awful times with this horrendous disease. My heart and positive energy go out to all of you.

I would say this, if I did not have thick skin I would have been driven away from this platform by now.

Having different opinions is what makes people, people. 

I assure you I am as loving, as caring as empathetic as you are.

I want the same outcome as everyone here which is to help fight cancer.

Love to you all x

I'm definitely a Hammer but never been a spammer.

I'm also definitely guilty of not reading the rules of the site, didn't even think to.

I went straight in with what I believe in and believe to be true as this is the approach I appreciate.I don't beat around bushes but I appreciate that may have been insensitive.

So again I apologise to all.

My information stands true however and the more of this back n forth the better as someone will have a look into the three amazing people I have referred to (even if it's only initially to debunk what I have said. Or what these incredibly knowledgeable people have said for years and have a plethora of evidence to support their claims) then I will have succeeded. 

If there is anyone reading this who wants to know the names of the 3 people I referred to in previous messages I am sorry but this site apparently does not let you mention respected professional medical people who specialise in this area.One of the 3 is recognised as being responsible for, and accepted by the main stream medical governing bodies across the world for introducing the Endocannabinoid system. He has been nominated for 25  awards for his specialist research and work in thid area and won many of them. He is an Israeli Gentleman and if you type ask Google who introduced the Endocannabinoid system to the world you'll find him. What you'll find (in my opinion) could not be more relevant to what this site is surely all about.

As always, sending loads of love your way!!!!

Sharing information is Caring information

Good Night hope you have a good sleep.

Other Jim

Tell you what Jim,

Why don't you go and expand at length about your thoughts/feelings/theories on a "personal story" thread of your very own rather than filling mine up with irrelevant verbiage that is of no interest to me?

Thanks in anticipation

I don't know about you Jayman, but I'm going to be hunched over my keyboard for the next couple of days preparing a bid for some of our glorious Government's alleged "Covid-19 recovery" R&D funding.

Maybe with a bit of luck I'll be able to cool off in the North Atlantic later in the week though?

Namaste,

Jim

Plus ca change. My latest PSA reading is 0.1 yet again. My oncologist says that she has no plans for any further treatment(s) at the moment. If the next reading is no higher I'll be moved on to 4 monthly testing.

In other news, whilst discussing the latest news with my GP I discovered that she had received a letter with detailed results of my CT angiogram at the end of July that I had not. As a consequence of that conversation I am typing this in a ward at Derriford Hospital in Plymouth. I'm expecting a triple or quadruple CABG in a week or so if I'm lucky. I'm told I can change my mind right up to the point when I fall unconscious on the operating table.

I've already had two Covid 19 tests, plus one "scare". A chap in our room with an ominous continuous cough was moved, presumably into a room of his own. The rest of us were "locked down" until his swab test came back negative.

Jim

Re the liver function tests, I assume you were tested for Covid and got the all clear?

I have asked since but his doctors are still saying it definitely wasn't coronavirus. I have my doubts

The oncologist reckons my strange liver function results are not prostate related, and suggested doing a scan to the GP. He's booking me in for an ultrasound investigation.

My oncologist is going to give me a call on March 24th.

Personally my money is still on the pills. I Googled "Gamma Glutamyl Transferase" only to discover that:

"GGT elevation has also been occasionally reported following nonsteroidal anti-inflammatory drugs (including aspirin)"

https://en.wikipedia.org/wiki/Gamma-glutamyltransferase

According to the leaflets both Atorvastatin and Ramipril can behave similarly.

Jim

Well, my dearly beloved and I were both flat on our backs in bed next to each other in North Cornwall between Xmas and New Year 2019 with the symptoms of Covid-19.

Perhaps it was merely "the flu"? My eldest son is a delivery driver and had a bad case of that a few days before.

Jim

Obviously I wasn't very clear last night Lyn!

I meant that my own symptoms might have been caused by "a bad case of the flu", but in my own head it's far more likely to have been Covid. Perhaps my son delivered a parcel to somebody recently returned from China? Or Italy?

Alternatively one of my neighbours is in the Marines:

https://uk.usembassy.gov/peace-through-sports-at-the-2019-military-world-games/

I didn't have any liver problems that I'm aware of, but in March I had a chest X-ray that discovered "emphysema & COPD". I have never smoked and never worked down a tin mine.

Jim

I've just returned from my abdominal ultrasound scan in Liskeard, where the operator assured me that nothing abnormal had been revealed.

Needless to say I am still waiting for my PSMA PET scan appointment, although I am already booked in for another chat with my oncologist in a months time. The gap between my PSA tests is reducing rather than increasing.

Jim

P.S. I've just had a call from a very nice lady who booked me in for my next PET scan at Derriford Hospital in Plymouth one week from today.

Edited by member 14 May 2021 at 15:06  | Reason: Not specified

Another 3 months have elapsed, so I turned up at my GP's surgery on Wednesday for a pre-arranged set of blood tests. Lipids, liver and PSA. All but the last one were cancelled due to a nationwide shortage of blood test vials.

My PSA reading turned out to be 0.25, which is less than last time. I guess that counts as good news? My consultant has departed for pastures new, so I have a telephone appointment with the new one booked for the week after next.

Jim

Thanks Gaz,

For more on the nationwide vial shortage see for example this from the BBC on August 26th:

https://www.bbc.co.uk/news/business-58324108

"NHS England has admitted that a shortage of vials used for blood tests will worsen over the next few weeks and will last until mid-September.

It said supplies remain constrained and are forecast "to become even more constrained over the coming weeks".

While the NHS expects the position to improve by the middle of next month, "overall supply is likely to remain challenging for a significant period."

Doctors had been told to stagger some blood tests due to the shortage.

They are warning that patient care will suffer due to delays."

It seems my previous oncologist has retired rather than "moved to pastures new". It also seems that the new chap doesn't care so much for the personal touch, so I was called by one of his underlings. The new team like to do things "by the book". PSA > 0.2 = SRT. They want to "get cracking ASAP". No hormones. 55 Gy in 20 fractions.

My recent PSMA scan revealed nothing of note. This is allegedly good news because a lack of visible metastases suggests that I am merely suffering from "microscopic" recurrence in the prostate bed. Another scan, as suggested by my previous consultant, is not necessary. However I am still not wild about the idea of being zapped at (apparently) random. I am assured that if I wait until something becomes visible, perhaps when PSA = 0.5, it may well be "too late".

I have negotiated a month to consider my options. Another chat on October 14th preceded by a PSA test. Always assuming that there are some more vials in the GP's cupboard by then.

Jim

Hi Chris,

Thanks very much for your good wishes, and your extremely detailed log.

"A second Hem-o-lok clip" - Jeez H. C. on a bike

"33 salvage RT sessions". How many Gy each, since a mere 20 fractions seems to be the order of the day down here in deepest, darkest Kernow?

Jim

Jim 

2 Gy per session 66gy total  according to my hospital letter. Don't we all get a similar total amount, sure the scholars will know ?

Hope all goes well for you.

Thanks

If you are being recommended for 2.75Gy that is either because it is salvage treatment or they think you don't need the higher amount. Perhaps they are aiming at quite a small area or it is going to be a bit close to your bowel or something.