Well I never

User

Posted 01 Jun 2016 at 19:26

DM

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 21:16

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 00:10

Hi,

Wonderful news, hope things continue to go well.

Steve x

User

Posted 13 Jun 2016 at 21:08

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 21:18

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 21:41

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 22:48

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 22:59

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 13 Jun 2016 at 23:07

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 04:26

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 09:28

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 14:07

DM

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 15:49

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 18:12

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

If life gives you lemons , then make lemonade

User

Posted 14 Jun 2016 at 18:25

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

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

User

Posted 14 Jun 2016 at 19:30

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 21:24

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
Mo

User

Posted 15 Jun 2016 at 21:04

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 17:18

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 17:23

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

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