Well I never

User

Posted 05 Apr 2016 at 12:42

Page 5 - ta-daaaa

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

User

Posted 05 Apr 2016 at 14:02

a huge relief to hear about your brother, I bet that has also lifted J's spirits.

Im sorry he is still feeling unwell but the traumas of the last 3 months or so will take a while for him to get back from. Any improvements now will be such welcome milestones.

Thinking of you my friend.

PS I see Lyn has taken to page bumping too that page not found message is relly annoying.

User

Posted 05 Apr 2016 at 17:44

Hi devonmaid

Lovely to hear your brother has medical problem that is manageable, thank goodness it was diagnosed early. Agree it could have been fatal.

Sorry to see hubby not so well. I support your thoughts on encouraging him to use catheter following passing urine urethraly, particularly if urethral urine total is reduced. Am sure you are putting your urine dip sticks to good use.

Take care

Lesley xx

User

Posted 05 Apr 2016 at 19:34

Well better news for your brother and hope the treatment goes well. JOhn still having a difficult time, I hope he begins to improve, it's about time eh and you had some good news.

User

Posted 05 Apr 2016 at 20:29

Hi Devonmaid,

So pleased with the news on your Brother thank goodness the clot was found and in time this must be a huge worry from your shoulders. You have had such a rough time lately.

I so no that feeling of what next and thinking that I wouldn't be able to cope, some how we do though no matter how tough life is we get through it. I am not sure how but we do.

I have fingers and toes crossed that the new Aunty B regime for J makes an impact and you can see an improvement.

Lots of Love

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Apr 2016 at 21:14

Hi Alison,

I don't usually answer just "good news threads", don't tend to empathy, leave it to others, but did try to make an exception for you as you have been there for so many so often and so consistently over the years. But all I got was "page not found". Bess this new site!!

I was going to pm you, but settled for sending you subliminal best wishes, which you have no doubt received by now?

If we never meet I would buy you a virtual coffee, with cream lovey. X

oh, and biscuit

atb

dave

Edited by member 05 Apr 2016 at 21:16 | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 05 Apr 2016 at 21:32

Thanks everyone. One nasty surprise for my brother. The consultant rang him on his mobile today and said he needs to go to his GP as his "prostate levels" are too high. I'm very confused about this as I can only wonder why on earth they would have done a PSA test. They didn't say any specific number, told him to wait two weeks and go back to his GP to discuss to allow the hospital notes to become available. I know they did liver tests and told him to reduce the alcohol (he likes his pint), I assume the liver function tests showed that but my worry button has been pressed as to whether he has a high ALP, you can know too much after all. Nothing to do but wait as ever. He's 49 and otherwise healthy (apart from 3 blood clots in his lung).

Eek!

Fingers crossed that this is nothing to worry about. Enough already and all that.

Chris, the ankles are swollen again and nighttime output is close to 2 litres. He's now on a some water tablet but it's made little difference.

User

Posted 05 Apr 2016 at 22:18

Have you had your blood pressure checked recently??? I should think it's off the scale with all these ups and downs! I do hope everything settles down with both hubby and brother soon.

In the meantime I think I would get into bed and pull the covers over my head for as long as it takes (perhaps with a bottle of your favourite tipple).

Take care

Rosy

User

Posted 06 Apr 2016 at 17:08

Hi Allison, I was so pleased to hear about your brother's results.

Rosy's right about your BP though. Is the NHS trying to scare you to death?

Get under that duvet till the dust settles!

Big Hug,

George

B2PCa

User

Posted 12 Apr 2016 at 21:18

Just an update on my brother re the prostate tests. His PSA was 5.4 at age 49 hence the worry. A week later it's 3.1. He will have another test to be sure but it's felt that this is related to the blood clot somehow. Phew"

User

Posted 12 Apr 2016 at 21:33

Pleased to hear you have had some good news. How is OH ?

Thanks Chris

User

Posted 12 Apr 2016 at 23:20

Phew indeed - lots of love xxx

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

User

Posted 13 Apr 2016 at 10:19

Good news, one less worry for you!

Lesley xx

User

Posted 13 Apr 2016 at 13:56

Double phew DM, you and yours need a break from the whirl wind of emotions from the last few months.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Apr 2016 at 21:42

Hi Chris

Up and down is how hubby is, poorly the last couple of days, urine cloudy with debris, despite the low dose antibiotics. Seems to have started to right itself though today. Lots of pains in various places, we have a CT scan coming up in early May followed by Onco a few days later, I think reassurance is needed. In the meantime on we plod.

Cheers

Devonmaid

User

Posted 15 Apr 2016 at 21:48

Have you still got the comfort blanket? You sound like you're still having a rough time. Thinking of you and fingers crossed for the scan result

Love and hugs

Rosy x

User

Posted 13 May 2016 at 20:32

Hi all

We went to see the oncologist yesterday after having had a CT scan last week. He started with the ominous "well there's good news and bad news" heart sinking we waited. PSA stable, bloods stable, so far so good. However, it is looking like the cancer has invaded the kidneys, neither of which seems to be working properly, despite the bloods being ok. Long story short, he's recommended a short course of RT to the prostate itself to try to reduce the tumour size and possibly improve the situation. If that doesn't work then it's a kidney drain and stents on both kidneys. The concern is renal failure apparently.

Actually we feel OK as we spent a whole hour with the oncologist and he was very thorough. He did say that it was good luck we had the CT scan because going by PSA and bloods they wouldn't have spotted it.

So we are waiting for the Churchill to phone to book him in for a planning session, followed by an unknown number of sessions but no more than two or three weeks as he wants to see us in five weeks and wanted to wait for post RT swelling to go down. He has already had 20 grays (I think) to his hip so obviously that needs to be taken into account.

Hubby has a second chest infection (possibly the same one), the oncologist gave me the distinct impression that chemo is not a good idea due to hubby's SPC and recurrent infections. Oh well that's one bridge we will face when we come to it.

Devonmaid

User

Posted 13 May 2016 at 22:08

Allison,

not much I can say other than I think of you both ever day, what a bloody rollercoaster.

xxx

User

Posted 13 May 2016 at 22:32

Thinking of you too Allison. X

We can't control the winds - but we can adjust our sails

User

Posted 13 May 2016 at 23:23

Never sure if putting a thanks on a post is enough, I cannot offer any advice but like others have said, you are both in our thoughts.

Thanks Chris

User

Posted 14 May 2016 at 01:02

Not a lot I can say either other than I'm also thinking of you both.

Paul

User

Posted 14 May 2016 at 02:03

Bloody chest infections :-( Hopefully, the zaps to the hips were far enough away from the prostate not to limit how much he can have this time. Fingers crossed and loads of love xxx

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

User

Posted 14 May 2016 at 05:06

hi fingers x for the RT to do its job

regards nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 14 May 2016 at 07:04

Hoping you can keep strong for each other. You've been through so much

User

Posted 14 May 2016 at 07:30

Hi Allison,

Thanks for the update,
Always thinking of you and hubby, lots of ups and downs hope the
infections go away

Barry

User

Posted 14 May 2016 at 07:43

Hope everything goes well for for you both with the next stage for treatment.

Thinking of you ,

John

User

Posted 14 May 2016 at 08:45

Hi D,

I can feel that awful sinking feeling in your post, let's hope that if J does need the op then it goes smoothly as you know we also have the issue with chemo. Life on this roller coaster is exhausting isn't it.

Thinking of you as always, lots of love.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 May 2016 at 09:26

Sorry to hear it wasnt only good news. Damn disease...thankfully they did a scan so at least you and they know what needs to be done.
Thinking of you both

Bri xx

User

Posted 14 May 2016 at 18:28

Also thinking of you. Such a sod to have kidney complications, you feel there is nothing this damn disease doesnt compromise. Send my love as always,

Fiona. xx

User

Posted 14 May 2016 at 18:35

Sending you a big hug devonmaid, really hope the radiotherapy has good effect for hubby.

Not sure how active hubby is at present but maybe this would be an appropriate time (pre radiotherapy) for a short get away to the seaside. A bit of sea air and sunshine would be great therapy.

Wishing you all the best with next treatment plan.

Take care,

Lesley xx

User

Posted 15 May 2016 at 03:05

A big hug from me too. I do hope the radiotherapy helps and also that the chest infection clears. If he's well enough for some sea air that sounds like a good idea from Lesley. I've just had some and even a bit of a paddle which felt good (and not even that cold)!

Take care

Rosy x

User

Posted 15 May 2016 at 11:49

Always there is change! When you think things are stable something comes along to remind us we are on a journey. I hope the RT can give the necessary relief and if not you have a second option, albeit not one you would wish to go down. Thinking of you and John as always!

User

Posted 15 May 2016 at 12:42

I realise that this may sound a bit forward as we don't actually know each other but I notice from your profile that I am not far away from you. I finish my sessions at the Churchill on 23rd June and from 25th May my appoinments settle down at 1.30p.m. When you get your appointments at the Churchill if you think that I can be of any help to you with transport at any time, then do not be afraid to contact me and I will do anything I can to help.

I realise that you possibly already have support in place but I am more than happy to let you have my mobile number should you need it.

I hope that all will go well.

Kind regards,

Kevan

User

Posted 15 May 2016 at 13:45

Thanks for your support everyone. John isn't moving much at the moment in so far as he's been very breathless and can't manage for long without having to stop. That said I took my girls away for the night to go on the Harry Potter tour (birthday surprise for my 33 year old) and he was ok on his own, though we have plenty of local back up if needed. It was a nice break for us and John loved time to watch wall to wall Westerns with the dog at his feet. I'd love to take him away to the seaside and I hope we will once we get the RT sorted. When we went up for his hip RT last year we rather enjoyed the daily trips, the RT department is a nice place with lovely people and we treated it as days out. The oncologist did say that this might not be as pleasant an experience due to the location of the RT and of course they need to do calculations on what's possible.

The chest infection is clearing up thank goodness, the sun has come out. We feel very lucky that someone ordered a CT scan, otherwise we might be in a very different position.

Devonmaid xxxx

User

Posted 15 May 2016 at 14:09

Hi Allison,

Thinking of you both. Hope the RT works it's magic.

Take care.

Steve x

User

Posted 16 May 2016 at 22:55

So glad you some time away , it just recharges you batteries some times and from one old timer to another a recharge is just what we need.

Being breathless is probably one of the worst things that Trevor has to deal with so I can totally emphasise with how J is feeling.

Keep your chin up chook

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 May 2016 at 23:31

Well we saw the urologist tonight and he showed us pictures of how the prostate had invaded the bladder leading to the blockages in the ureters and urethra. He was (as always, he's such a nice man) very reassuring about the possibility of renal failure and told us if he thinks John needs stents it will be done right away as an emergency with no waiting. He told us what to look for, chest pain (surprisingly) etc. He to,d us that the RT is palliative only to help with symptoms and wouldn't make any difference to the kidney issue, which did surprise us. Still, we start the RT process tomorrow with the planning session. I do actually feel happy that John is getting RT to the prostate as it doesn't seem common and that's where the cancer is concentrated and very active. I assume the RT will be scheduled for next week or the week after as we already have out next Onco appointment for 13th June.

User

Posted 19 May 2016 at 01:48

Hi,

Hope all goes well with the planning session and the treatment follows soon.

Steve x

User

Posted 19 May 2016 at 06:53

Best wishes to you both Alison. You're both so brave and have been through so much recently.
Here,s to another drink by the seaside soon !
Chris

User

Posted 19 May 2016 at 07:16

Good Luck DM. Hope it all goes according to plan.

We can't control the winds - but we can adjust our sails

User

Posted 19 May 2016 at 07:30

Wish you all the best for the treatment and hope it goes well. Is there any sign of the SPC being removed or that semi permanent.

Take care of yourselves.

Thanks Chris

User

Posted 19 May 2016 at 07:45

hi thanks for the update, we are all willing the RT to do a good job

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 19 May 2016 at 12:38

Hope all goes well today, are they going to put stents in after RT?

Im hoping I will be down your way over the BH weekend, depending on my on/off/on house move?!! I will message you nearer the time to see if we can meet up for coffee

xxx

thinking of you as always

User

Posted 19 May 2016 at 13:08

Thinking of you and J today I hope everything goes smoothly .

Big Hugs my friend .

BFN

Julie Xx

NEVER LAUGH AT A LIVE DRAGON

User

Posted 19 May 2016 at 17:04

How did today go love?

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

User

Posted 20 May 2016 at 18:52

Hi Alison

Hope everything is going as well as possible

If anyone deserves some good news it's you and john

Lots of love to you both

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 20 May 2016 at 20:33

Hi all

We had the planning meeting and will be off to Oxford next week (Thursday, Friday and Monday Tuesday and Wednesday the following week), 5 sessions to the prostate. We saw the urologist on Wednesday and he said he wanted to avoid another operation and quality of life is everything (which we agree with). They are all hoping the RT will improve the bladder/kidney symptoms. We quite enjoyed the last lot, driving to Oxford from Swindon is quite pleasant outside of rush hour so it's not too bad.

Lots of love

DM (I'm loving this new acronym does anyone else hear Wilmot's voice in their head) xxx

User

Posted 20 May 2016 at 22:00

In my experience, driving anywhere from anywhere is unpleasant these days .... weirdo x

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

User

Posted 20 May 2016 at 22:07

sounds good DM

posting to try and push you to next page as you are coming up page not found again....

grrrr

User

Posted 20 May 2016 at 22:08

needs lyns magic touch I think

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