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User
Posted 21 July 2016 22:34:43(UTC)

Aaaaaaaggggghhh - three weeks to get an appointment is just ridiculous - but at least we know that the NHS would work if someone had a serious illness.

Oh, wait ......

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


User
Posted 22 July 2016 22:22:02(UTC)
Come on damn you, turn the page!!!
User
Posted 22 July 2016 23:18:49(UTC)
Mrs D what are you doing still up at this time of night 🌛 I have a feeling I may be up all night it looks like more puppies could be on the way I wish they would take pity on me and give me a day time delivery, life never quite works out how you want it to does it.
I have fingers crossed that J gets his results sooner than the 3 week wait but then I suppose that will only happen if the results are worrying 🤔
I have a good feeling that I could be the page flip that you are waiting for.
X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 July 2016 21:08:57(UTC)
Any news on the latest deliveries Julie? Thanks for the flip, don't know why it takes so much effort! Xxxxx
Thanked 1 time
User
Posted 26 July 2016 00:03:02(UTC)

It's always the waiting for results that gets the mind working overtime.

Julie, Most of your litters seem to be at night!

Girls,
Still thinking of you all and your other halves.

XxxxxX

Thanked 1 time
User
Posted 11 August 2016 21:46:50(UTC)
Hello all
Just an update. John is improving every day at the moment and finally we have decided that we will go on our holiday to Devon on Saturday, it was touch and go last week but he's much better than he was, so it's all systems go.

We saw our oncologist this week, he said John's bloods are all "normal for him" and there's nothing worrying there, PSA remains stable at less than 3. He has agreed that John should have this operation called ureterovesical reimplantation and that will happen on Sept 6th. This should remove the immediate qnd ongoing risk of kidney failure, obviously it can not reverse what's there not will it change the bladder situation so the SPC stays, but the prevention of kidney failure will be a relief. He said (and I agree) far better to do this as an elective rather than as an emergency when he's not so well. He's still getting a lot of excruciating bladder spasms but he's even getting used to that.

So Devon here we come, weather is looking pretty decent so I will be able to show our granddaughter the sea in my beloved home county and make sand castles etc. John will be keeping out of all that, doesn't go down well with an SPC but a nice relaxing week should prepare him well for the surgery ahead.

I would definitely advise anyone with worries like we had to contact their hospice. Ours sent the nurse out to look at John and she was instrumental in getting him mobile again, just chatting to him and encouraging him in a way that GPs don't have time for, worked miracles


Lots of love
Devonmaid xxx
Thanked 1 time
User
Posted 12 August 2016 07:27:42(UTC)

Enjoy your holiday DM. You both deserve it.

*******

We can't control the winds - but we can adjust our sails
User
Posted 12 August 2016 08:13:37(UTC)
Wonderful news DM
I have got lovely pictures in my mind of you and baby D building sand castles on the beach while John relaxes . Just what I could do with 😉
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 August 2016 11:34:21(UTC)

Dear A & J,

 

That's the best, most cheering post I've seen from you in such a long time.

It uplifts us all, and I couldn't be happier for you both.

I hope you have a wonderful holiday together and come back refreshed and ready for anything!

Your words about hospice involvement are so important to everyone too.

My local hospice does outpatient appointments and about four years ago I decided to ask for a referral.

My thinking was, at the 7yr stage, and things were getting a bit dodgy, I'd better get my name on their books while I felt OK rather than having to try for it further along the line.

It was a really good move, The benefits of a monthly 20 min appointment were excellent.

The consultant there was the most helpful guy I've met. He could get me results such as MRI within a few days, rather than have me waiting and worrying, and he even diagnosed a serious condition on my very first visit. He had notice me limping badly, and immediately went for a stethoscope. He found I probably had femoral artery blockage and referred me immediately to a vascular consultant.

Incidentally, just the day before, after months of visits to the GP, that GP had referred me for physio.

Thank God my hospice consultant was so good at his job. Femoral artery and Ileac disease were confirmed by the vascular surgeon, and I was put on corrective meds immediately.

So, I do hope that anyone here reading your note about the hospice nurse will re-think the hospice option. It's never too early to have a referral, and it could save your life, as well as making you feel more confident about the days ahead when (or if) more care is needed.

 

Incidentally I don't go monthly now, as I'm stable again, but at least I know I have my name on their patient list and can get any advice I need by phone.

 

Wishing you the holiday of a lifetime,  you both deserve it!

 

Warmest wishes,

 

 

George

User
Posted 12 August 2016 11:37:45(UTC)

That's great news and enjoy your hols too

Viv X

The only time you should look back is to see how far you have come
User
Posted 12 August 2016 11:46:44(UTC)

So good to hear Allison. I do hope you and John have a great break and can approach the surgery in good spirits. Great to sense a bit of optimism in your post, it's been a long haul for John to make progress so long may it continue.

User
Posted 12 August 2016 22:01:56(UTC)

Fantastic news! Have a lovely holiday - a pity you can't post pictures of the sandcastles!!

User
Posted 13 August 2016 02:14:24(UTC)
Hi Allison,

Hope you have a wonderful holiday, fingers crossed that all goes well with the op in September.

Steve x
User
Posted 13 August 2016 06:35:43(UTC)
DM

Have a nice holiday.

Thanks Chris
User
Posted 14 August 2016 08:58:42(UTC)
DM
hoorah,best news from you in a long while. I did think the recent photo of John on FB with little D showed just how much better he is looking. You too are looking well and so much less anxious.

As George has so eloquently put it there is never a "too soon" for an incurable patient to get involvement of the local hospice. The help and support they can give to the Men and their families is amazing.
Enjoy your very much needed holiday in Devon, don't eat too many cream teas (oh what the... eat as many as you want! one every day if it takes your fancy)

see you for coffee soon it seems ages since we were able to get together.

Thinking of you and just so relieved things are getting better
xxxx
Mo
User
Posted 15 August 2016 12:13:45(UTC)

Great news, so pleased for you both !

 

Fiona. xx

User
Posted 15 August 2016 13:22:58(UTC)

From what I have seen on fb, John is enjoying his holiday while Devonmaid needs an afternoon nap to keep up!!! Lots of love to you both xxx

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


User
Posted 15 August 2016 19:00:43(UTC)

Nice to hear good news 

Barry

User
Posted 19 August 2016 22:01:31(UTC)
Well my Facebook friends know we had a fabulous holiday in Devon, lucky with the weather and such a joy to be with our granddaughter every day, sheer bliss. While we were away our consultant rang and said he wants to do another procedure while John is under the anaesthetic to try to see if the SPC can be removed. It would be an absolute miracle if this went well and the SPC could be removed, I can't tell you how awful the bladder spasms are that it causes, not to mention the other consequences on the bowel.

So we are now home, relaxing having made some fantastic memories and now hopefully we will have a quiet few weeks until the Operation.

Bye for now, back home in Swindon but longing to be back in my home county.

Lots of love
Devonmaid xxxx
User
Posted 19 August 2016 22:12:36(UTC)

Very glad to hear you had such a good break and the possibility of losing the SPC. You've had such a rough time so it's really good to hear things are going well for you both. Did you make lots of sandcastles??

User
Posted 19 August 2016 23:16:22(UTC)

Hi DM,

Glad you're home safely and had a great time (and great weather). 

I've really enjoyed the FB pictures, brings back memories of our holidays in the past.  Thank you for sharing them.

Really hope things go well for John in the coming months.

Steve xxx

 

User
Posted 20 August 2016 14:36:07(UTC)

Dear A & J,

 

It's obvious from your post that you've had a perfect holiday. Actually, the happiness shines through!

This is absolutely uplifting to hear. You both really needed the time away, and I'm glad everything went so well, even the weather.

Now I am waiting to read here that your miracle will happen and the SPC will be removed successfully.

It's not much to ask of him upstairs, is it?

 

Stay well, (both of you!),

Warmest wishes always,

 

 

George

 

User
Posted 20 August 2016 17:40:23(UTC)
D

Hope oh does manage lose the SPC, intrigued to know what the surgeon is going to do.

Thanks Chris
User
Posted 20 August 2016 20:50:50(UTC)
Chris
He is going to reroute the ureters (apparently they take a circuitous route) and reimplant them into the bladder. Then he is going to do the rebore thing and a urethral catheter again while John is under, he believes that with the previous TURP and the RT it could be a good time to do it. I'm not sure if he will be giving the prostate a further shave, I'll find out soon enough. Funnily enough, the last couple of days urine has been passing out through the penis again, only a little bit but an exit is there now. We don't know why this is happening (it's very painful actually) but we are wondering of the RT is continuing its job and is reducing the prostate size further. Either way it increases our hope. I have to say that the SPC (though much needed) is a nightmare, the leg bags drag him down (the weight of them) and are always uncomfortable. How people cope won't them forever I don't really know. Still it's better than the alternative as we say here.

Rosy, we did make sand castles and we played jumping the waves and a nice man made lovely puddles by digging for cockles, Dakota wore her Nanny out jumping form one to another all along the beach. Who needs the gym!

Lots of love
DM xxx
Thanked 2 times
User
Posted 20 August 2016 21:49:27(UTC)
DM

Thanks for the reply I hope all goes well, you certainly deserve a good outcome.

Thanks Chris
Thanked 1 time
User
Posted 21 August 2016 21:08:48(UTC)
Hi DM
Just caught up with your thread as we have been away too.
So glad you got to go away, you both so deserved the break. Wonderful therapy for uplifting your spirits. Hope you also managed to have a few glasses of wine!
Sounds like your surgeon has a good plan of action for John, hope all goes well for him.
Take care
Lesley xx
Thanked 1 time
User
Posted 21 August 2016 22:08:40(UTC)

I still love jumping waves!

Thanked 1 time
User
Posted 22 August 2016 07:48:06(UTC)
Hi Devonmaid just catching up really glad you had a lovely holiday and your grandaughter kept you busy sounds like you burnt off any calories gained with cream teas 😊 hope all goes well with the operation, take care both. Jayne x
Thanked 1 time
User
Posted 06 September 2016 22:05:32(UTC)
Evening all
Well the deed is done and the operation is now over. It was pretty traumatic, lasted over four hours and included a nice little incident where John vomitted on the operating table. Thankfully we had an alert anaesthetist, who prevented inhalation of the stomach contents. The operation itself looks like it will have been successful with the ureters now implanted at the top of the bladder instead of further down. The consultant said it was a very tough op, inside was much worse than had been expected, thank goodness it was an open procedure. He said we were close to a catastrophic state with the kidneys and all with no pain as usual with John. So he's got two,catheters, stents and is feeling very rough, but it is hoped that in a few weeks, he might be down to self catheterisation rather than an SPC and two healthy kidneys. The urethra was apparently in surprisingly good order, with just one stricture. John will be in hospital for a week or so, stents out two weeks later then, with luck a trial without catheter again.

None of this would have been possible if it hadn't been for our wonderful urologist and the fact that this operation is done commonly in Eygpt where he is from ( blinking foreigners coming over here making our people better using their amazing skills!). He is a fantastic person, he really believes in John and wanted to make his quality of life better. We are so lucky.

Lots of love
A very shattered but hopeful, Devonmaid xxx
Thanked 2 times
User
Posted 06 September 2016 22:23:44(UTC)
Brilliant news DM, have been waiting all day for news so at last the op is done and you can breathe. Gentle thoughts for J to make a full recovery and be home soon with lots of love and warmth plus a huge cuddle from little D.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 06 September 2016 22:36:49(UTC)

I think we have all been holding our breath - I am relieved for you that it is now over. Major surgery - he is in hospital for longer than he would have been for RP!!!!

Try to get some rest DV xxx

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


Thanked 1 time
User
Posted 07 September 2016 00:25:31(UTC)

Hi DM,

Really pleased that things went well for John with his operation.  You must be very relieved.

Please pass on my good wishes.

Steve

Thanked 1 time
User
Posted 07 September 2016 01:25:19(UTC)

So pleased to hear all went well despite the 'glitches'. Take care, make sure you get some rest and I hope J's feeling better soon x

Thanked 1 time
User
Posted 07 September 2016 05:19:44(UTC)

Chuffed for you both. Hope recovery is rapid. Best wishes




If life gives you lemons , then make lemonade
Thanked 1 time
User
Posted 07 September 2016 06:48:07(UTC)

Good news at last. Hope John makes a speedy recovery

Bri x

Thanked 1 time
User
Posted 07 September 2016 06:50:30(UTC)
DM

Pleased to hear it all went relatively well and hope he quickly recovers. I would say have a rest while J is in hospital but I think the visitor gets the rough end of the deal.

Just started back on the ISD again and found one part of the urethra uncomfortable to pass the catheter, but tried a catheter called a Q tip or IQ and it goes in like a dream.

Hope all starts to improve from here.

Thanks Chris.
Thanked 1 time
User
Posted 07 September 2016 07:21:31(UTC)
My friend now breathe and try to get a little bit of you time whilst John is in such good hands.

I have everything crossed that all of this makes a massive improvement in J's quality of life indeed for all of you.

I hope to see you again soon but please do give John a gentle hug from me and your self a great big one.

All the very best
Xxx
Mo
Thanked 1 time
User
Posted 07 September 2016 11:45:15(UTC)
Good to hear that you're in such good hands with the specialist you describe and one you can trust and put your faith in.

Wishing for speedy but a timely recovery for John

Arthur
User
Posted 07 September 2016 12:17:51(UTC)

Allison, this is such encouraging news at last.

 

It sounds like John's care has been excellent.

 

I hope you can both breathe more easily now and able to relax and recharge those batteries.

 

And isn't this good news arriving just in time for your 'notable  birthday' coming up soon?

 

Very best wishes to you both,

 

 

 

George, Lynn & Katrina

User
Posted 07 September 2016 12:32:58(UTC)

Ooooh, a notable birthday?????

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


Thanked 1 time
User
Posted 07 September 2016 16:02:29(UTC)

So pleased to hear this news.

 

Fiona. xx

 

User
Posted 07 September 2016 18:49:34(UTC)

Hi Allison,

So pleased to hear the good news

May it long continue

 

Barry

User
Posted 07 September 2016 20:15:12(UTC)
Good news DM...

Here's to a speedy recovery for John.

KRO...
User
Posted 07 September 2016 20:24:48(UTC)
I wasn't expecting much today but John does look awful, he passed out when they tried to get him out of bed. It seems his blood pressure is low for some reason. Chatting to the urologist emphasised how lucky we've been. John's bloods have consistently been fine for creatinine and yet his kidneys were about to give out and since the RT, he has had no pain there. He is a conundrum.

Yes Lyn, a significant birthday is coming up on the 13th, Dakota will be two and her Nanny will be 60. Don't say it too loud though, I don't want to frighten the horses. I suspect that John will be home but celebrations will be mute but some things are more important. It's only a day really and I'm lucky to be able to share it with my love.

Fingers crossed he'll be a little better tomorrow. Thank you for all your lovely support.

Lots of love
Devonmaid xx
User
Posted 07 September 2016 22:48:34(UTC)

I didn't realise Sai's mum was that old! Hee hee hee

Worried for you lovey, I hope tomorrow brings better news xxx

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


User
Posted 08 September 2016 12:40:08(UTC)
Hi Devonmaid hope hubby is feeling a bit better today and that you are taking care of yourself. As for 13th it can be made special 😊 kaybe x
User
Posted 08 September 2016 19:54:45(UTC)

It will take a few days. This was a major op and building up his strength will take time. He will get there and then you can celebrate together!

User
Posted 09 September 2016 21:32:20(UTC)
Well I must admit I am amazed at my dear hubby, he looked a different man today, free of drains and drips, just the two catheters left (it will be a while before they are removed as the kidney stents will be removed via the urinary catheter so it must stay in place until then and the SPC will remain as insurance for the time being. His bloods are good and on this performance will be home in time for our daughter's birthday on Sunday, let alone mine and Dakota's on Tuesday. He really is a walking wonder. Anyway, let's see what the weekend brings. Feeling very happy today. I have been saying to John for some time that his kidney issues could be why he feels so drained all the time, I feel I might have been right.

There are challenges ahead but we do not have to worry about kidney failure any more. Life is looking good right this minute xxx
User
Posted 09 September 2016 21:41:40(UTC)

So pleased to hear things are going well. Wishing you all very happy birthdays! x

 

User
Posted 10 September 2016 05:41:02(UTC)
DM

Pleased to hear things are improving it has been a long slog and happy birthday for next week.

Perhaps the programmers at PCUK might fix your page not found as a birthday present.

Thanks Chris
 
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