Well I never

User

Posted 20 May 2016 at 22:11

Lyn is still on the M25. With a not happy face.😄

NEVER LAUGH AT A LIVE DRAGON

User

Posted 20 May 2016 at 22:12

Yay are we there yet..🤗

NEVER LAUGH AT A LIVE DRAGON

User

Posted 21 May 2016 at 07:45

Hope the RT treatment all goes well, and enjoy your drives, do you have to negotiate the magic roundabout. Who is Wilmot ?

Thanks Chris

User

Posted 21 May 2016 at 19:16

Ha the magic roundabout is negotiated regularly by me and doesn't scare me, oh no!

We will drive up the 419 and then the dreaded 420 to get to Oxford.

Ah Wilmot, he was DM (danger mouse)'s studious little friend.

User

Posted 21 May 2016 at 22:18

Hi devonmaid/DM!!

I've never known somebody change their name so often my friend!! Lol.

You mentioned earlier about RT not often given to prostate area palliatively. Bob had RT to prostate area following his TUBR, he only suffered minimal side effects of tiredness and some gut ache during course. Folloeing the course it successfully helped improve his urine flow and lower his psa.

All the best again with treatment, hope roads are free of traffic and road works for you.

Lesley x

User

Posted 26 May 2016 at 22:43

That's good to know Lesley, we had the first of five sessions today and they did say it was unusual but we were pleased to have the opportunity.

He already has a bloated tummy and its sore to pee but he has his SPC so can avoid that bit at least.

Lots of love

devonmaid, DM, Allison, mum, nana, Ally etc etc

User

Posted 01 Jun 2016 at 16:55

Well RT finished today, very tiring but side effects not too bad at the moment, some pain in the original site where he had RT last year but otherwise just the usual aches and pains.

Got great news about my brother today, he's clear of all cancer and he does only have blood clots. A few weeks ago that was a terrible thing, today just blood clots looks fantastic!

Cheers

Devonmaid

User

Posted 01 Jun 2016 at 16:59

Very glad to hear the good news! Long may it last.

Best wishes

Rosy

User

Posted 01 Jun 2016 at 17:33

Really pleased that you have had some good news to report today.

Hope everything else continues to go well for you too.

Best wishes ,

John

User

Posted 01 Jun 2016 at 19:46

Glad to hear the good news Allison

Barry

User

Posted 01 Jun 2016 at 20:26

Pleased to hear things are progressing well and I am sure the news about your brother was a relief.

Thanks Chris

User

Posted 01 Jun 2016 at 22:16

Yay thank heavens for blood clots🤗 What is life like when we are thankful for blood clots. That is surely not normal but hey live our lives DM and yes that is good news. Crazy , crazy, crazy .

Keeping fingers and toes crossed that J feels better after his a RT no more travelling for the moment means more time to cuddle your gorgeous D. She is a little diamond.😚

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 02 Jun 2016 at 01:10

Hi,

Wonderful news, hope things continue to go well.

Steve x

User

Posted 13 Jun 2016 at 22:08

Evening all

So, 10 days after RT we've had a terrible urine infection, blood and gawd knows what coming out, possibly even bits of tumour. We had a week of constipation, 2 enemas, 20 odd sachets of Laxido, etc, etc plus two catheter blockages. It's been a lot of fun, especially for John who has been stuck in the bedroom for a week or more.

We missed our oncology review today because he's too unwell to go out, oncologist was meant to phone but didn't. Thank goodness for the district nurses, who have been here rather a lot this week one way or another. Nice people, very busy, they know nothing about you except what they came for but do a great job.

I'm hoping that the rest of this week is a little more settled, we could do with a break from the constant infections and troubles.

Where's the comfort blanket?

Love Devonmaid

User

Posted 13 Jun 2016 at 22:18

How awful for you both. I do hope things will improve soon. I think constipation was one of the things that made David feel more miserable than nearly anything else that came his way.

Not sure who's got the comfort blanket now but if they let me retire soon I'll knit you another one.

Take care

Rosy x

User

Posted 13 Jun 2016 at 22:41

Sorry to hear about all Johns problems. I have the comfort blanket but I am now sending it to you as I can't keep it forever when I know others need it as much. You really have had an awful week or so. Tim is continuing to go downhill and now just about manages to get downstairs and spend the day in a chair and I have found a lot of comfort having the blanket so I hope you will now. I hope things will improve for John soon.

Linda

User

Posted 13 Jun 2016 at 23:48

Oh dear DM,

I am really sad to read this I had no idea how difficult a time you were having, life on this roller coaster is so very hard at times . I have so many what I would call life long friends , some I have known since school days but when the chips are down it is here on the forum that I turn too because we all truly understand, we have walked in each other's shoes and walked the same path.

Keep your chin up and wrap yourself in that blanket take strength from it .

Really hope that J feels better soon.

Lots of love

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Jun 2016 at 23:59

So sorry to hear the latest saga. John really is having a terrible time. UTIs Re so demoralising and so I do sympathise. I have had a UTI this past week but mercifully it's been mild so nothing compared to John's current woes. Thinking of you both.

User

Posted 14 Jun 2016 at 00:07

Terrible news - how quickly can they fit you in for a new date to see onco? This has been going on for too long and John can only be getting weakened by it so I hope you get to see someone asap.

Lots of love and hugs to you, lovely xxx

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

User

Posted 14 Jun 2016 at 05:26

hi DM let me help wrap you in the comfort blanket, with some hugs also

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 14 Jun 2016 at 10:28

Thinking of you DM.

If that comfort blanket has a little bit of each of us in it (which it surely does - given that it contains hugs from everyone) it must be huge. Thank God it's virtual otherwise whoever is passing it on would have an enormous postage cost.

Perhaps we could divide it in two !!

Hope you get help for your John asap.

( XX )

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

User

Posted 14 Jun 2016 at 15:07

Sorry to hear of J's on going problems, it is so annoying when people do not phone, we know how busy these consultants are but a quick call can give alot of comfort and reassurance.

Thanks Chris

User

Posted 14 Jun 2016 at 16:49

Fantastic news!! Keep doing whatever you're doing it's definitely working. Feel so happy for you both.

Debbie X

User

Posted 14 Jun 2016 at 19:12

I read your posts with sadness. Nothing seems to go right for you both at the moment. I wish I could send support somehow :-((.
Best wishes
Chris

User

Posted 14 Jun 2016 at 19:25

Hi DM,

I don't know where the CB is, but if there is anything I can do "practically" to help or ease any other concerning issues, blocked drain, loose light fittings, lawn needs cutting, dirty dishes on the draining board need a scrub, please ask?

Dave

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 14 Jun 2016 at 20:30

What a lovely lot you are. I'm not really downhearted, I guess I'm more fed up for John really. One good thing, Mafeking has been relieved. Apparently 8 laxido in a couple of pint of water works wonders. He's still very weak but he's surely going to improve now. I just keep thinking, he's had RT to the primary tumour, surely that's excellent news for him, I feel sure it is. We will get over this hump, I can only thank heavens that I am officially on long term sick leave from work, I'd never cope if I had to keep up with work.

I feel that I am basking in the warmth of a freshly laundered, lovely smelling (is that lavender Lindy?) comfort blanket, all infiltrated with the love and good wishes of fellow travellers, thank you all.

Still no call from the oncologist. I'll call the urology specialist nurse tomorrow and make sure we get a new appointment. Our oncology team live over in Oxford Churchill hospital and come to Swindon to deliver their services, I don't know why. It means that they are not about very much.

Anyway, he's come downstairs to watch Game of Thrones, Daenaryis (don't know how to spell that) seems to have perked him up no end, can't think why.....

Love to everyone

Devonmaid xxx

User

Posted 14 Jun 2016 at 22:24

DM, my friend

i know Lindy is going to send you THE comfort blanket that all of us have used extensively, but I am sending you a virtual onesie it is all soft and fluffy and a nice neutral seal colour. On the front it says "love you loads" and on the back it says "loads love you"

Such a hard time for you both I will be thinking of you especially this weekend at MOTS when Mr Hardy has stitched me up to read the Chris B poem ...coaching welcomed !

Love and hugs to John too

xxx

User

Posted 15 Jun 2016 at 22:04

Hi Devonmaid

Sorry to hear Jon has suffered few side effects from the radiotherapy.Although I know he is going through the mill which is pretty crapp I'm hoping that constipation and uti's will only be short term manageable problems for him. Also maybe once the inflammation from the radiotherapy reduces, things will improve. It's wonderful to hear he's felt up to coming downstairs to watch tv.

Take care,

Lesley xx

User

Posted 18 Jun 2016 at 18:18

So we've had a quite a week, infection is still present and new antibiotics started today. John has been in terrible pain from bladder spasms and we are currently waiting for a doctor to call, district nurse has been in to change the catheter again as its been running very slow, if at all and it's been flushed a lot of times this week already. She wasn't pleased with the gunk that came out when she changed it and the pain John is in, so she called the doctor, she said she was staying with the patient. The answer was she would get a call back in two hours. That's the district nurse, not us, how appalling. Eventually she had to leave and we are still waiting more then three hours later. I'm afraid that horrendous pus is coming out of the penis as well as clots and gunk into the catheter bag. No wonder he's in pain. I've no idea what the next step will be but we are back to how things were before the supra pubic catheter was installed, toilet visits every 30 minutes (desperate visits, with small amounts of urine being passed per urethra). I know that's confusing but since the TURP some can be evacuated via the urethra and it makes John feel more normal that way, the catheter is used to actually empty the bladder.

I can't tell you how tedious it is waiting in for medics or for call backs. I'll update as and when I know what is coming next. John says he would never have had the RT if he'd had a clue this would be the result.

Love you lots gang

Devonmaid

User

Posted 18 Jun 2016 at 18:23

This is awful for you both. I don't know what to say. Would it be better for John to be taken into hospital to get things sorted?

I really am thinking of you both

Rosy x

User

Posted 18 Jun 2016 at 18:44

Sorry to hear things are not getting any better. I never quite understood how the SPC could properly empty the bladder, I do not see how it can be in the correct position to drain everything. I found it drained better when I was laying on my side. If alot of stagnant urine is in there no doubt it will be infected. Could J tolerate doing self catheterisation to help drain more urine out of the bladder.

Hope you get something sorted soon.

Thanks Chris

User

Posted 18 Jun 2016 at 18:58

I admire you both. John has immense resolve and you patience and understanding. I don't think I would be coping well at all with all you have been through recently. I agree maybe hospital is the way forward , even though that seems a step backwards.
Best wishes
Chris

User

Posted 18 Jun 2016 at 18:59

DM I really feel for you both.

I hope you get some help soon XX

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

User

Posted 18 Jun 2016 at 20:19

Hi DM

This sounds such an awful situation for you both. I must admit I would be inclined to think Jon needs to be in hospital, at least they can monitor output (irigate to maintain flow), start treating infection with iv antibiotics and give him adequate pain relief. I know I cannot see how poorly Jon looks but I might even consider a 999 call.

Thinking of you, hope he has a settled night tonight whatever the plan is.

Take care

Lesley xx

User

Posted 18 Jun 2016 at 22:57

This is dreadful - take no prisoners DM in getting John the proper medical care. Keep us all in the loop, you are on my mind xxx

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

User

Posted 19 Jun 2016 at 01:39

Hi,

I'm so sorry this is happening to John, it's just not fair. My heart goes out to you both, it's not easy looking after someone who is in pain and feeling that you can't do anything to take that pain away.

I hope they manage to help John soon and provide the medical care he deserves.

Steve x

User

Posted 19 Jun 2016 at 09:19

I hope things have improved this morning. You both shouldnt have to go through this. The NHS is great but its when you hear things like this that you realise its no where near perfect

Thinking of you both

Bri x

User

Posted 19 Jun 2016 at 17:04

Just looked in and seen your post DM, I really do hope that things have settled a little bit if not then I agree a swift 999 call maybe what is needed. When ourr NHS is working well it is fantastic and when it's not it is downright deplorable.

Thinking of you X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 21 Jun 2016 at 00:12

Hi my friends

Well John is in hospital getting IV antibiotics, fluids (he was dehydrated despite drinking loads) and a good clear out in the bottom department. I contacted the consultant by email yesterday morning and he rang me straight back. After a chat he said he thought John needed to be in hospital but I couldn't get him to go in on a Sunday, not after the New Year debacle. Not only that I would have needed an ambulance as he was so weak. Anyway, long story short, the plan was to take him to the surgical assessment unit today at eleven to see the urology registrar. As it happens the lovely consultant came down to see him too and said that if his bloods are deranged (I love that word) he will go ahead and arrange to fit a stent, but otherwise just aim to get him over this hump and do minimal invasive stuff. Despite all of that it took 7.5 hours of sitting around in a hideously hot, airless room with other sick people, to get a bed. Mustn't moan, he did finally get a side room and is comfortable now in hospital. Thanks for all your support, I knew he needed some proper medical help and he's getting it. Bless him, he has suffered a great deal this year and is pretty weak. My main concerns were that he improves a bit after antibiotics but goes downhill rapidly once they finish, each time being left weaker and the impact on his damaged kidneys. Thank goodness the consultant gave me his email and phone number (he feels very bad about what happened at New Year) and I was able to speak to him directly.

I'm sure that things will start to improve greatly now that he is getting the attention he needs.

Lots of love to all of my friends here, I really do appreciate everyone of you.

Devonmaid xxxx

User

Posted 21 Jun 2016 at 06:21

DM,

You both seem to be going through so much at the moment. I really wish you well and hope that the current position improves for you.

John

User

Posted 21 Jun 2016 at 07:00

Thank goodness John's now getting the treatment he needs. I do hope he starts to feel better soon and in the meantime you get some well deserved rest.

Rosy x

User

Posted 21 Jun 2016 at 07:07

Hi DM, what a journey! It's good that John is having the treatment that he needs and that you could contact the consultant directly. Hopefully he will get better now that he is in hospital and get some strength back.

My thoughts are with you both

Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 21 Jun 2016 at 08:18

Glad you finally got it sorted. It's no less than your John deserves.

I like the humanity of the Consultant. They aren't all living in ivory towers then.

Best wishes for a speedy improvement

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

User

Posted 21 Jun 2016 at 08:53

Good to hear J is getting the right attention and good of the consultant to give you his contract details.

Hopefully things will start to improve soon.

Thanks Chris

User

Posted 21 Jun 2016 at 09:06

So relieved to read Jon is getting some good care and attention. Hope he continues to steadily improve.

You take good care of yourself also DM, nows your time to catch up on some rest.

Lesley xx

User

Posted 21 Jun 2016 at 09:39

Morning

I've spoken to my lovely man this morning , he's still on Iv antibiotics and fluids, he's got to go back on Tamsulosin, which is fine. He sounded much better, his voice was strong rather than the high pitched weedy sound that was coming from him. Absolutely no doubt he needed this treatment and I thank goodness he is being sorted out. I was very worried as you all know. In our case it's often been the side effects of treatment, rather than the cancer that have proved hard to handle, but the alternative is much worse!

Lots of love

Devonmaid xxx

User

Posted 21 Jun 2016 at 11:02

Turning your page for you DM.

Mines showing page 7 but then it's not found !!

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

User

Posted 21 Jun 2016 at 17:41

Hi DM

Just caught up with your posts, what a terrible time you have had, poor John , hope things are improving.

Will keep you both in our thoughts

Take care

Debbie

User

Posted 21 Jun 2016 at 17:46

I am glad John is sounding better, that must be a good sign. Hope he continues to improve and will be home soon and feeling much better.

User

Posted 21 Jun 2016 at 20:12

This might flip your page, stupid bug.

I am so sad to read all the bad things you are experiencing. Sadly reminiscent of the hardest times with Mick.

At last admitted for better and more comprehensive treatment. Take this opportunity to charge your own batteries and pamper yourself a bit.

Big hugs

Xxxxx

Notification

Join the online community now.