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My husbands recent diagnosis of advanced prostate cancer

User
Posted 07 Jan 2022 at 17:14

I intend to keep drinking 3 litres of water a day  for the foreseeable future and actually started doing so at the time (last June) that I was officially diagnosed with prostate cancer. It does not have to be just water, but can include low-fat milk and unsweetened drinks.  Most people do not drink enough fluids,  which are needed to flush the toxins out of the system.

 

Ivan

User
Posted 09 Jan 2022 at 00:17

Hi Ivan,

Yes I’ve told him he has to keep drinking lots, I’d rather him have an accident than an infection. He will definitely get started back on PFE’s when catheter out and hopefully recovery will be good. Will keep you posted. Hope you are continuing in the right direction 👍🏽

User
Posted 09 Jan 2022 at 00:23

Originally Posted by: Online Community Member

My work involved stopping in hotels a couple of nights a week. I was paranoid about wetting the bed. I put a pad in my snug pants, wore a pair of tena pants over the top had one of the hospital type water proof squares on the bed and also slept on a towel. As it turned out I never leaked.

I assume you can still book trains seats to be near a toilet. Don't forget some nappy sacks for the wet pads]

 

This is all really great advice Chris thank you. Will definitely do all of this as I was worried about the hotel bed 🤦🏻‍♀️ I took everything to London with me in preparation as it thought catheter would be coming out…but with us getting the train this time I will be restricted with how much luggage! I got him loads of pads and pants and also puppy pads which someone else advised so will take them with us.

I did request a seat near toilets, but I always request him a forward facing seat which he never gets so won’t hold my breath ha! 

User
Posted 09 Jan 2022 at 00:25

I can’t seem to get the hang of posting on this site still 🤦🏻‍♀️ figured out the ‘quote’ but still hasn’t posted as I wanted 🙄😂

User
Posted 09 Jan 2022 at 00:36
You click on quote and then when the section appears in the text box, you move your cursor to the line below the final "quote" wording so that your own words show after the italics.

I.e., when quoting Chris, his last word was 'pads' snd in your text box, there would have appeared some brackets and quote after the word 'pads'. You needed to start typing after that.

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

User
Posted 09 Jan 2022 at 00:57

Originally Posted by: Online Community Member
You click on quote and then when the section appears in the text box, you move your cursor to the line below the final "quote" wording so that your own words show after the italics.  


Thanks so much Lyn. Just testing it out and seeing if its worked this time 🤦🏻‍♀️😂

User
Posted 20 Jan 2022 at 13:42

TWOC finally completed yesterday and although took a while….successful 👍🏽
Stayed in a hotel last night and now just on the train home. 
Early days of course but the night went well. We were brave enough to go out for food last night and he was fine. He’s getting the urge to go for a wee which I think is positive and he seems to be making it before dribbling. Flow wasn’t great yesterday, I bought the bottle that someone suggested last week and he’s found it better weeing into that first (it’s also helping us keep an idea of quantity). He got up a couple of times in the night to wee and flow seemed stronger. We were fully prepared with pants, pads and puppy pads on the bed but all dry this morning. He is getting some leakage when moving about, coughing etc but if we stay on a similar path we will be delighted. (Not getting complacent though) All in all feeling really good, really positive about the future and ready to get on with our life’s. What a different story to 6 months ago.

Thanks so much to everyone on here for all of your help over these months…not sure we would have got through it all quite as well without all of the support and advice xx

User
Posted 20 Jan 2022 at 13:48

Great , Elaine, that everything has gone well and that your OH is mostly continent. Leakage when moving around and when coughing etc is to be expected and should improve over time. Still need to do pelvic floor muscle exercises and drink  a good amount of water each day.

 

Ivan

User
Posted 20 Jan 2022 at 15:03

Great news Elaine onwards and upwards 👍

User
Posted 20 Jan 2022 at 15:54

Thank you Ivan & Gaz.

They said not to start pelvic floors again straight away, not sure if that’s because of 4 weeks with the catheter in 🤷🏻‍♀️will start again from next week though 👍🏽

User
Posted 20 Jan 2022 at 16:50

Elaine,

Pleased all went well, another hurdle out of the way. Take it easy, no marathons just yet.

Thanks Chris

User
Posted 20 Jan 2022 at 17:19

Thanks Chris. And no definitely no marathons yet…or ever as far as he will be concerned 🤣

User
Posted 22 Jan 2022 at 16:21
Below was posted by Lyn on a different thread, replying to a question I asked with regards to lymph node spread. I have copied it onto my thread so I will always be able to find it.


Posted 22 Jan 2022 at 14:49

 

I think it is because we imagine the cancer growing inside the prostate and then bursting out of the covering to then climb across to a lymph node or a bone. It doesn't work like that.

 

The cancer can burst out of the gland and invade other things close by, such as the bladder, bowel or pelvic muscles. Or it can stay in the prostate and look quite small but blood and lymphatic fluid both travel through the prostate and it is possible for the flowing liquid to pick up cancer cells and then carry them away. If the lymphatic fluid picks up some cancer cells, these will usually be collected in the nearest lymph nodes (which act like a sieve, I suppose) - this may be what has happened in your case. Or the nearest lymph nodes can't collect it all and the cancer cells are then travelling all around the body - this is N1 in a diagnostic report and the genie is out of the bottle, the whole lymphatic system cannot be treated curatively. Or the lymph nodes do their job well but the blood carries cancer cells around the body, including to the bone marrow where cells settle and then metastasise. Again, the genie is out of the bottle and generally speaking, although one or two bone mets can be zapped, there is a high chance that the cancer cells are already settled in bone marrow elsewhere around the body.

 

What is interesting is that for most men with PCa, the prostate cancer cells travel around the blood or lymphatic system but are never able to take hold / metastasise. I think PCUK was funding some research at one point to try to identify why some bodies can clean up the travelling cells and some can't.

 

I don't suppose there is any way for you or the surgeon to know whether those cells had all been caught in the sieve of the nearest lymph node (in which case, he should have a lovely undetectable PSA for the rest of his life) or whether the cancer was already settling in other nodes around his body. It is a waiting game and, if you are lucky, it will be a very long wait - my dad had his recurrence 13 years post-op although obviously those tiny micromets had been sitting there all that time. 

User
Posted 22 Jan 2022 at 18:50
No problem - just keep in mind that this was a simplistic or visual explanation - in reality, lymphocytes are produced in the bone marrow and then carried to the lymphatic system ready for action so cancer cells could be moving in and out of marrow. It's a bit like the central heating system isn't it - water goes through the boiler and is then sent to the taps - if you want hot water, it is diverted through the heating element on the way. The radiators are heated from the same boiler - goes through the same heating element and then flows off around the house. The radiators are supposed to collect all the sludge at the bottom and you hope it never gets into the boiler.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jan 2022 at 14:00

I think because we were initially told his PCa was incurable and surgery wasn’t an option, to now having had surgery and with a slight possibility he might not need further treatment, I was just struggling to get my head around it all (obviously amazing news for us). Three pages of histology sends your mind into overdrive too trying to unravel it all and usually failing ha! I suppose I feel like we’re now in a similar position to most with this disease, that we just have to assume all ok until a PSA test tells us otherwise. It just helps to hear things in a more simplistic way so really appreciate it x

User
Posted 16 Feb 2022 at 17:45

Well back to London this week. Bloods yesterday and just had appointment with consultant. First post op PSA <0.03 very happy with that. Will still have HT in his system so I guess this PSA was to be expected but I still started to worry a bit as it got closer! Relaxing for 3 months now until the next one 🤦🏻‍♀️ X

User
Posted 16 Feb 2022 at 17:58

Great news Elaine

 

Wasn't tempted to stay in London to remind you of old times?

 

Ivan

User
Posted 16 Feb 2022 at 18:13

Excellent Elaine  long may it continue  👍

User
Posted 16 Feb 2022 at 18:47

Thanks guys. And yes Ivan had the 2 nights here. Just on our way out to celebrate….which isn’t the best for continence 🤦🏻‍♀️😂 

User
Posted 21 Feb 2022 at 15:41

Great news Elaine. Long may it continue like that. I have my next 3 monther next week so getting a bit nervous as always.

 
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