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User

Posted 10 Sep 2016 at 13:43

Been away on another short camping break and have come back to your lovely news. So pleased for you both.

Have a very "special" special birthday, even if it can't be a real knees up one just yet. Let's face it, you've already had your "special" birthday present eh!

Long may your John continue to improve.

Best Wishes

Sandra

******

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

User

Posted 10 Sep 2016 at 20:33

And today's good news is that I have him home. Plan is to remove the many staples in two weeks, stents in maybe six weeks, along with a possible trial without catheter. Obviously, he's not on the best of form and still unable to stomach any food (this is not unexpected with handling of the bowel) but it's early days and they do kick you out really quickly these days, even in a private ward. Hoping that he continues to get better of course and I'm sure he will.

I do think being in his own home, with home comforts will really help.

Wish us luck.

Lots of love

Devonmaid xxx

User

Posted 11 Sep 2016 at 13:14

Hi Devonmaid, lovely news I'm sure being at home and with you caring for him, he will soon be feeling better. Take care jxx

User

Posted 28 Sep 2016 at 23:45

Hi everyone

Just an update form me, which is more of a way of documenting what's happening than anything else. The three weeks since John's op have been pretty awful for him, lots of blockages (kidney sludge, yuck) and terrible, terrible bladder spasms, on a par with a late stage birth contraction without a doubt. Anyway, we've got through it and he had his 41 staples removed tonight (phew), it was his first trip outside for three weeks.

The plan now is to do a scan using a dye to check that the kidneys are ok and the bladder is not leaking, that's going to be in mid October and followed by a general anaesthetic to remove the stents and do a dilation, with an over night stay and the removal of the urinary catheter. It may not function at first especially as it will have been eleven months since it was last used, but fingers crossed. I've no doubt there will be a rehabilitation period if it does work. The SPC will remain in place for some time as he must not go back into retention.

It's been a lucky escape as both his kidneys were blocked and at least now, even if he has to keep the SPC, his kidneys shouldn't fail.

I must admit this last year has been very trying for both of us and I have been having a gentle meltdown in the last week. I guess hitting 60 and not being able to work plus nearly 6 years of this damnable disease is bound to take its toll occasionally. Of course I am immensely grateful to have my lovely hubby to keep me company and the consultant mentioned again this evening, how amazing that despite having a Gleason 10 disease he is still with us. I think the MDT found this pretty inspiring at their recent meeting from all accounts.

Anyway, that's where we are now. Hoping the stent removal goes well as it is a vital stage in his recovery.

Lots of love

Devonmaid xxx

User

Posted 29 Sep 2016 at 09:02

Lovely update DM.

Not surprising you're having a trying time, what with the 6 years you've already had.

I sincerely hope that the next lot of scans and op does the trick for him and that quality of life improves for both of you.

********

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

User

Posted 29 Sep 2016 at 09:19

Hello my lovely friend.

I am not surprised you had a meltdown it's been a long time coming and actually proves how resilient you really are. Your mind and body waited until John was through the major surgery, back home and looking as though he is improving daily.

Now you must do what you often advise others to, take some time for yourself and I don't mean a day playing with your adorable grand daughter, I mean for you. Go to the spa or have a spoil me day at the salon, go and buy nice clothes, drink a glass or two of prosecco, eat cake.

Any or all of the above please !!

You have both been through so many ups and downs, 6 years of dealing with advanced and incurable PCa with a host of complications, yet you still both smile and stay positive and you continue to support and think of others.

As for working ...forget it are you kidding me? You "work" more hours than most workaholics. If it is not helping John then it is providing care for little D , your Girls and their husbands. Looking after your home, the car, the garden, the dog, being nice to your neighbours and still posting on here.

As for being 60 well... I will join you very shortly in that "golden girls" decade. I'm rather hoping to start behaving badly!

Thinking of you both, I hope to be down there in October so maybe we can have a little time to behave badly together!!!

All my love

Xxx

User

Posted 29 Sep 2016 at 15:59

Great advice already been given by Mo, spot on. Look after yourself as John slowly but surely improves. It's been a long haul but he is getting there and you need to keep your sanity and health to enjoy that. Thinking of you both.

Edited by member 29 Sep 2016 at 16:01 | Reason: Not specified

User

Posted 29 Sep 2016 at 21:35

Why just a gentle meltdown?? Surely you must have earned yourself a full on mega meltdown by now!

But seriously I do hope that things continue on the right track and that you take the advice given on having some proper time out for yourself.

Best wishes

Rosy x

User

Posted 29 Sep 2016 at 22:27

Well I'm taking Mo's advice and am off on a bra-making course this weekend (yes I did say that) up in Leicester. The girls are on sentry duty and have the number of the district nurse service, which we use every day or so for the inevitable catheter blockage. I've learnt to clear it myself but I can't expect my girls to do it. Embarrassing for all concerned.

Mo, let's go down the pub in October I've had enough coffee!

Thanks for the words of support, I think my equilibrium is back. Well more or less anyway.

Love

Devonmaid xxx

User

Posted 29 Sep 2016 at 23:23

You deserve a break it's been a long hard slog for you both. Not nice about the SPC, but sounds like you have that under control, 41 staples ? Ouch !

Thanks Chris

User

Posted 30 Sep 2016 at 16:15

Originally Posted by: Online Community Member

Mo, let's go down the pub in October I've had enough coffee!

Thanks for the words of support, I think my equilibrium is back. Well more or less anyway.

Love

Devonmaid xxx

A bra making course, Well I never ( ooops sorry that's your line!) Please can you see if you can make one with straps that don't constantly slip down, one where the underwires (if fitted) don't come out in the wash, escape the special bra bag and bugxxr the washing machine up. One with a better fastening system than hooks and eyes which attach themselves to anything other than each other (sorry gents I know there are probably many of you that have mastered the art of one handed unfastening who would be sorry to see these go!) Also one that really works as a sports bra without looking like an over shoulder boulder holder.

Once you have done that then I will buy you several glasses of our favourite tipple down the pub in October. actually I am looking forward to that already

xxxxx

User

Posted 30 Sep 2016 at 20:17

Please could you make a bra where the straps adjust from the front instead of the stupid "modern" way where you have to be a contortionist to heave 'em up !!

(Sorry fellas - not s pretty thought I know !!)

*****

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

User

Posted 01 Oct 2016 at 02:38

Hi,

Not sure if I should be reading the recent posts but DM, I hope you have a nice relaxing weekend and enjoy the time you have to youself.

I know you will never stop worrying about your OH but you need to look after yourself too. A break away helps recharge the batteries.

Have a great weekend.

Steve

User

Posted 01 Oct 2016 at 13:27

Errrmmm, Allison, I wonder if I'll be the first guy here brave enough to ask 'Can you design a macho one for men?'http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Bloody HT (as Simon would say)!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

B2PCa

User

Posted 01 Oct 2016 at 14:36

Similar to my thoughts George considering what happens sometimes on HT but I wasn't brave enough to say so!

Arthur

User

Posted 01 Oct 2016 at 14:47

Hi,

I wanted to ask the same question, but I have to be very careful what I write on this site because, even though it seems harmless to many, it can be taken the wrong way.

Steve

Edited by member 01 Oct 2016 at 14:49 | Reason: Not specified

User

Posted 01 Oct 2016 at 20:36

Haha you guys won't know how I managed to keep my big gob shut about that today, thinking of my poor dear love and the fact that his are a bit more in need of support than my own!

I just needed something different to do and one thing this has shown me in full technicolor is my complete inability to retain information. From my usual position of first to finish I got last position and managed two holes in the fabric too. Hells teeth, I'm not used to coming in last. Still believe it not sample no 1 does fit so woo hoo for me. It's been hard to be away, especially as the nurses had to be called again and I wasn't there to tidy up..... being away and sleeping soundlessly in the premier Inn (Mo those beds are spot on) makes me realise how awful day to day life has become.

Next week, the work "nurse" is visiting to see if I'm still unfit for work. Well I think I'm not fit after coming,last, that's so not me!

I heard today that the Govt is going to change the rules on sickness benefit for long term sick, please let that extend to DLA/PIP. It's such an awful thing to have to cope with three years.

Can't wait to drink those slightly alcoholic drinks Mo xx

Signing out from Leicester Fosse Park.

Ttfn

Devonmaid xxxx

User

Posted 03 Oct 2016 at 15:43

Just another note to say that John was admitted this morning for a total bladder washout and was diagnosed with an infection, home now, resting after such an ordeal but hopefully the antibiotics will help.

I don't think I can go away again, when I got home he said "I'm so happy to have you home"

Love Devonmaid xxx

User

Posted 03 Oct 2016 at 15:57

Ah Bless him and you. What a pair you are.

John obviously feels more comfortable and secure when you are there which is understandable when he is in pain.

I hope the antibiotics kick in soon and do the trick.
******

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

User

Posted 03 Oct 2016 at 16:21

So sorry to hear about this latest ordeal for John.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Like Sandra, I hope the antibiotics kick in - and fast.

I know what you mean about probably not being to go away again. I can only pray that you can get away together, and that you at least enjoyed the sleep you got in that Premier Inn.

Those beds really ARE the best!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

Wishing you both calmer days ahead.

George

B2PCa

User

Posted 03 Oct 2016 at 16:51

Hopefully the SPC made the wash out easier and more effective, may have missed it but is J passing any urine naturally yet.

Fingers crossed for you both.

Thanks Chris

User

Posted 03 Oct 2016 at 21:42

Oh no! Poor you and poor John (although I wait with bated breath for pictures of you modelling the bra on FB) - you did it, you had that brief respite and both survived to a point, my guess is that you won't need or want to go far from him again. I hope the infection is under control soon x

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

User

Posted 03 Oct 2016 at 23:24

Oh no - you two just don't get a break from it all! I do hope the antibiotics help quickly and that your night away has given you a bit of a boost ( and if it didn't maybe the bra will). I love the beds in Premier Inns too!

User

Posted 04 Oct 2016 at 01:49

Hi DM,

So sorry John had further problems. Hope he feels better soon.

I'm glad you were able to have a bit of a break this weekend and a couple of restful nights sleep. I stayed in a Premier Inn at the Olympic Park when I was doing photographic duties for PCUK and found it was very comfortable too. It was a shame I had to miss out on the breakfast due to an early start.

John's very lucky to have such a loving, caring wife to look after him.

I hope things improve for you both soon.

Steve

User

Posted 04 Oct 2016 at 05:17

hi DM
you wives, partners, girlfriends or boyfriends whatever are like guardian angels, how you cope amazes me, and its great to read all the support answers

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 04 Oct 2016 at 13:46

Hi devonmaid was sorry to hear that your hubby has been through the mill again hope he is feeling better now. Take care Jayne x p.s. Travel lodge have fab beds too 😊

User

Posted 04 Oct 2016 at 19:47

What can I say Bras and Booze a lethal combination I have got myself in many a situation in the past I won't elaborate because Lyn will ruin another laptop.😂

Glad that you managed to get away DM I so understand the need to do that . I really hope that John improves quickly with the Aunty Bs this has been one rough ride this year for you.

Take care with that Bra and mind Johns eye😉

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Oct 2016 at 22:22

Thanks all, this infection is taking some time to recover from and having two legs bags (i.e. Both catheters running) is hard to cope with. John is still feeling ill and is losing a fair bit of weight, which worries me but he has a low push appetite.

On another front, the company insurance sent a nurse to see me today to check if I'm still unfit for work. As I don't talk much about what's happening (only to you guys and one online friend, and that's write not talk), so I spent the whole hour in floods of tears talking about the things that have happened in the last twelve months. I am making an assumption that I'm still not fit for work, frankly it's the last thing I could do.

Next hurdle is the cystoscan on the 17th to check all the connections and after that more surgery to remove the stents and another dilation on Nov 1st. After that the urethral catheter will be removed and a trial will commence to see if urine can be passed the natural way. Since it's been ten months I think this will be a challenge. Anyway, one worth trying.

Lots of love

Devonmaid

User

Posted 05 Oct 2016 at 23:11

so much to deal with makes the bra challenge seem a lifetime ago I suspect?

Lots more hurdles in this race yet but you and John seem to take most of them in your stride I think you are both amazing!

If your work people cannot see the stress and strain you are under right now then they need to go to specsavers ...really?

Looking forward to wizzing you of to the pub soon

xxx

User

Posted 06 Oct 2016 at 00:21

But was the nurse kind, and did you feel better afterwards (if a little dehydrated)?

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

User

Posted 06 Oct 2016 at 05:59

I'm sure the nurse would understand your situation. Here's hoping the cystoscan and further treatments go well

Bri x

User

Posted 23 Jan 2018 at 08:25

Is this the one ?

Thanks Chris

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