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. |
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I'll read them as long as he doesn't say anything cruel about me!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Chris is irreverent and fearless - he will take anybody on, I think
Still happy to read though George - and I have tasked Steve with taking some action photos of me for my website so this will kill two birds with one stone :-0
Edited by member 10 Jun 2015 at 21:53
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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good to read your company Dr is giving you the support that has been lacking for a long time, look after yourself and hubby and enjoy
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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Hi Alison,
Am sorry to read about John and his not so nice experiences!
Really hope operation on the 4th Feb goes well, will be thinking of you.
To work or not to work!!! They both have positives and negatIves. I had a couple of months off work and found it so beneficial to be with bob and recoup some of my energies. I was very worried about my return and did a phased return with some support. Don't get me wrong it's still hard but the benefits I've found have been my colleagues have sort of been my councillors. It has helped bob in the fact that he has tried to do a few more domestic jobs around house so keeping him a little more active and giving him a daily sense of purpose.
Hope you find what suits you best, good luck with your descion.
Lesley xx
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You look after yourselves and yes stuff the housework. I am resting too so I declare this
a PCa communal rest day.
requirements:
do nothing,
keep comfortable,
watch rubbish on TV,
forget anything you think you ought to do it will be there tomorrow
Take drugs if in pain,
Relax and sleep when needed
This should be come an annual event, maybe held in a big marquee where we can simply just be and let the world go by.
Allison and John enjoy your rest day. I know I will!
User
Ah well, another infection, more antibiotics, the low doese ones haven't been scripted yet, so thank goodness for the out of hours doctor service. Lots of pain this time, although I did gently kick him when he was telling the doctor he was ok (he really isn't).
I must admit, infected urine stinks to high heaven, one sniff was enough for me today, straight on the phone, no messing this time.
No wonder he's been under the weather (ie bed bound) for the last couple of days. Only to be expected from what people here have said.
Cheers all
Devonmaid (I've stopped using my name as I noticed I'm easily found on the Internet and prefer not to be so visible) xx
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At least you know what you're looking for now and can respond quickly. I hope it settles soon. I know what you mean about names - I have avoided using my real name for the same reason.
best wishes
Rosy
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Hi all
Just an update, I've got a big birthday coming up this September so was looking forward to a small celebration. Hmmm, an Open Ureterovesical reimplantation on the 6th to prevent kidney failure will put a stop to that! Ah well, I'm not a huge fan of celebrations as I prefer doing something quiet, just as well really.
Off to get bloods done shortly, hospice nurse came round yesterday and recommended steroids for a couple of weeks to give John some energy, he's utterly knocked out by the RT, anyway she called our GP surgery with the list of symptoms and they said, no, they wanted to do a full blood work up. They suspect that he's anaemic (well we know he is but how much is the question) and he's got a lot of itching which could indicate kidney or liver issues. So sensible approach by the GP, managed to get an appointment for the bloods today but the joke is that no appointment is available for the doc to review for three further weeks. Of course I won't leave it at that but it made me laugh as it was the doc that requested that I drag him down there.
Fun and games down in Swindon.
Lots of love
Devonmaid xxx
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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
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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
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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
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Similar to my thoughts George considering what happens sometimes on HT but I wasn't brave enough to say so!
Arthur
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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
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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
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Allison,
That's fantastic news!
Really pleased for you both.
Mondays will become your favourite day of the week.
Don't forget me if you win that lottery, you're on a roll.
Steve x
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What wonderful news for you both, long may it continue
Arthur
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My Goodness, well I'll go the foot of our stairs or what was that about the front gate, WHAT !!!!! I had to read this twice Alison and John SOOOOOOOOOOOOOOOOOOOOOOO Happy for you Guys. What ever is working stick with it . Maybe it's Granparentism wonderful news. I have to say it again.
WAY TO GO X
What a start to the week.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Allison
I am so very happy for you and John, whatever it is doing the trick meds, being a grand daddy or just a minor miracle enjoy the heck out of it.
xxx
Mo
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Lovely news my friend; although you know that I get nervous around miraculous drops, you are so well-tuned into J that you will spot any problems quickly I think
Enjoy your beautiful family during the gorgeous weather that we are supposed to be getting :-) xxxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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After reading my messages following my appointment and feeling a bit down I got such a great lift from your news. John's news often seems to parallel mine so it was such wonderful news to hear your progress. Maybe I should stop casodex for sillesbril? So pleased for you both, long may the resistance continue. I feel better already!
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thats really good news on my first post read of the day
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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Brill news for you both. Keep kicking it's butt
Bri
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What a lovely start to a new month, excellent news.
Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
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Brilliant news for you, so very glad, long may it continue !
Fiona x
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Hi Alison
This is fantastic news, was lovely to read your post. Hope Jon is feeling well in himself. Bob is still responding well to stilbestrol also despite a few other minor problems(must update my own thread soon).
Hope you have some nice summer holiday plans to enjoy.
Lesley xx
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Lovely news, Alison, so pleased to hear, love Janet, x
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I was thinking today I wonder why Stillbestrill isn't used more often. It's been very effective in John's case and has kept the tool kit full of options. May be it isn't a very sexy drug, what with all the new ones coming on.
I must admit we are starting to wonder if the PSA result was accurate and not an error. Just to be sure we will take a further test in a month or so. If he hadn't had recent RT I would be concerned about the drop (as Lyn gently pointed out it doesn't always auger well) but we really need to be sure it was 2.8 and not 12.8.
One thing we didn't get cleared up was a nasty pain in the side that is getting more insistent. No one has taken it seriously and although it doesn't bother John all the time, it can be severe. Urological symptoms are starting to appear too, but we've been so lucky to have avoided them for so long, the specialist nurse said a rebore might be needed. Sounds unpleasant to say the least but we'll hold off on that until it's necessary.
Cheers all
Devonmaid xx
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Allison, John,
Fabulous news! Out of the blue! Wonderful. So pleased for you both. I am lost for words.... when Di told me, i thought the PSA had gone down by 2.8, not down to 2.8!
Fingers crossed for the next test, and look forward to seeing you both soon!
Love to you both,
Peter
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Dear Allison and John,
What incredible news! The best I've seen on here in a while.
In fact, 'incredible' is an understatement.
Lynn and I are delighted for you both. So sorry you can't celebrate with us all on 20th June, but please enjoy the family wedding and we'll see you at The Mill next year without a doubt!
Now who will read Chris Boothby's naught verses THIS YEAR?
Your reading of it last time round was unforgettable!
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You think he would dare???!!!
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Would Chris write anything cruel about you, Lyn?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
Nah, but he would definitely try to embarrass you, and we all know that's impossible.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
Lord knows what ditties he has in store about us all.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
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Now Lyn
If you do it don't forget to pause at just the right moment and look slightly coy from time to time! You know you can xxxx
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YES!!
You'll be perfect Lyn.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
A 'master class' from Allison.
Who can forget those coy looks as she read out such verses as 'George and his Virgin troubles' and worse.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
Mind you, I could swear she blushed from time to time!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
We're all looking forward to this!
See you soon,
George
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Lyn this naked thing is becoming of interest, I know I suggested you go to Whitehall naked to get the attention of government officials who could sleep through Natalie Portman pole dancing, but at the B2PCa gig Mmmmmm
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Would like to wish you good luck for Monday.Hope this is just a blip on this long road
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Even though I have just done my daft and silly post ( I hope it has made you smile) life with our men at the sharp end is pretty tough. Not for the same reasons but we spent so many months with T having breathing problems and I totally understand how that impacts on everyday life. We so often talk about Q.O.L on here and being breathless is awful, I am sending so much love to you and John .
Thinking of you both .
BFN
Julie x
NEVER LAUGH AT A LIVE DRAGON |
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Hi Allison
its tough to watch our loved ones with the breathing problems.
Just wanted to send you both my best wishes for Monday.
Carol x
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Allison
I will be thinking of you as always, this has been a long and winding road for you ,John and your family.
Many dark days but thank God some truly amazing days as well.
I will be down around 22nd through to 28 or 29th. So will call you before then so we can get together for a catch up and big hugs.
All my best wishes for the Onco review
Xxxx
Mo
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Thinking of you both Allison and sending as many positive thoughts as I can for the Monday appointment.
My very best wishes to both of you
Sandra
We can't control the winds - but we can adjust our sails |
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Also sending much love to you and John. It's easy to forget that even if there isnt a regular update, the symptoms and side effects of PCa make life hard going at times. Thinking of you both,
Fiona.
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Hi Allison,
Lovely to see your update though am very saddened to see your husband is suffering. Often wonder how things are with you as you are at similar stage of journey to us.
Quite concerned that he is struggling with his breathing. Forgive me if I am stating the obvious but has gp checked his chest, maybe there is a simpler solution. I know it is very easy to consider the worst when at this stage of the journey and await oncologists plan.Am hoping gp may be able to prescibe something to alleviate symptoms.
I will be thinking of you Monday and hoping Oncologist comes up with an effective longer term plan.
Sending you a big hug.
Lesley xx
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Hi Allison,
Really sorry to hear John has had an uncomfortable time.
I hope that Monday's appointment will provide a few answers for you both.
Thinking of you.
Steve x
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Thanks for the support my friends, it really helps. Julie I laughed my head off at your last post on your thread, thank goodness for humour eh?
The breathing issue has been reviewed by the GP and it's been put down to the anaemia. I think it probably is the reason. Mind you I think we have another chest infection brewing by the sound of the coughing, sigh. He had the Zoladex jab today and it hurt like hell and had blood taken in preparation for Monday. So a typical day in the life of a long term met patient.
I must admit to feeling pretty down myself, I think the years of being on edge have taken their toll on me and although on the surface I am the same, I know I am not. I am a very lucky person, I know that, I've been married to my love for 39 years, have two wonderful daughters and now a beautiful granddaughter. And we have survived five years of metastatic disease and we didn't expect that. I'm not sure why I don't feel like jumping for joy these days but I am so weary of it all. That's the reason I don't post much anymore. There's really no alternative but to just get on with it. We do enjoy our lives so it's not all bad but I do wish this disease would do one! I have no doubt we all feel the same.
Lots of love
Allison xxx
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Hi Alison
I know how utterly washed out we both are after nearly 15 months of this , so I have nothing but utter admiration for you both getting through 5 years. We can only hope and wish the very best to you , especially over xmas
Chris and Elaine x
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Maybe it is the sense of time ticking on Allison - being blessed to have had 5 years that you maybe didn't expect to begin with does not trump the sadness of wondering when the luck will run out or the exhaustion of constantly being on your guard. You have said this to others plenty of times so I will remind you ..... sometimes the one looking after forgets to look after themselves.
Keep on being strong, my friend, although I have to be a little selfish and admit I miss your posts on here.
Love you loads xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Why not
Best wishs Allison
Barry
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Allison, though you won't know me, my first thoughts on reading your latest post was...RESULT....and a real sense of karma, so go and do the things that you want to do rather than the things you have to do....
D
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To hold down a job and look after your OH in the way you'd like is an impossible task. Your doctor has done absolutely the right thing for the 2 of you. Taking better care of yourself will enable you to care for John with more energy, and most importantly proper rest.
It seems unbelievable the comments that have come from work. In this day and age, target driven management has a lot to answer for. It seems some people just don't have an understanding bone in their bodies. It was Richard Branson, I think, who said the company that best looks after its employees is the one that will achieve the best customer satisfaction. It is a maxim that needs to be followed more often.
Best wishes to you both.
Paul
Stay Calm And Carry On. |
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Allison, so glad you wont have the stress of working, it amazes me how people manage to carry on and have a loved one they are caring for., I would have gone crazy if that was the case when Neil was ill. Hard to do, but hope you get some time for yourself, even if only a distraction. I know how this whole thing eats away at our physical and mental resources. Hope you have a bit more time to post here, I often think about you and how John is getting on. My love and thoughts with you,
Fiona. x
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Allison my lovely friend, your support was invaluable to me and now I hope I can give a fraction of that back.
I am so happy you can be off work ad infinitum. It is so what you need, seeing how well you were last time when you had the 6 month sabbatical.
Your John needs you and you need to be there for him and your family.
I have never said this on the forum but just one year of looking after Mick was an enormous strain on me mentally and physically. I think living with metastatic disease for 5 years must be devastating. I know how much you love John , he certainly does love you and I am sure he would never have made it this far without you and your family.
I will call next week to arrange a girlie lunch when I am in Swindon over Xmas. If John feels up to it we can all hit the pub for dinner one evening too.
Biggest love, hugs and respect
Xxxxxxxxxxxxxxxxxxxxxxx
Mo
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Hi Allison
I so so empathise with you.As yourself, I understand 5 years of dealing with a loved one with metastatic disease trully takes its toll. Constantly trying to keep the family organised and in good spirits. Maintaining a positive attitude when deep inside the negative thoughts battle to the forefront of our complex brains. And then throwing a stressful job into the equation where it's so difficult for colleagues to really appreciate our stressful situations.
I have had a recent change in work departnments and change of work colleagues. It quite unsettled me and i had to take some time off to recharge my batteries and discuss a plan of support. I have been very lucky that my new work colleagues are most understanding of our circumstances. I am still counting down 4 years till I can retire at age 55, though I too have the option of 6 months full sick pay if needed.
Allison I am so shocked at some of the comments you have had to deal with from your work. So glad to hear you have a good option to step away from work. Hope you can recoup some energies to enjoy valuable happy times with your family.
Take care.
Lesley xx
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Hi Allison
I'm sorry to hear that John has been in pain. Fingers and everything crossed that things get sorted
Really glad to hear you've had an understanding Dr who has resolved the work issue.
Take care
Bri x
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Hi, Alison,
Your words have struck such a cord with me, the stress and exhaustion of living with our sort of diagnosis is mentally ,physically and emotionally so draining.. Yes so grateful for the extra time but the cancer is always just over your shoulder. We can,t run from it and we can,t hide it is the extra member in our life.
So glad about your work situation people don,t realise how hard it is too be pulled in so many different directions you can now focus on John. Stay Strong.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Alison,
Not been on for a few days so just picking up your news. It feels like your workplace has woken up to your needs at long last and whatever problems you have had you can now put some distance from them. In the early stages of my journey I was bullied at work and did not have the strength to deal with it. Luckily, it was not planned, my centre was moved and I was able to move away from the problem. I was able, to forget that problem and move on and you can do that now, keep focused on that.
I feel for John too, having had a similar year myself with pain and then relief but pain just under the surface. As you may have read I am looking to retire next April and am already taking more rest. I know like you and John do that the future is always uncertain and it will make the journey constantly difficult and unpredictable. I am sure that being at home more will help me as it now does John with you at home. I know you will still have many ups and too many downs but your friends are all here to support you as your strength will be exactly what John needs in his camp.
Take care of yourself Alison, take care of John and let the disease do its worst, you will face this together and that it all you can do, but what a great combination!
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Evening all
Just an update from us. PSA remains low and stable. We continue on with Stillbestrill (that's from Sept 13!) at least for two months, which is our next oncology appointment. In the meantime they've booked a new bone scan to see what's happening as John has been having pain in the back ribs and left side. On that point, he also had a kidney scan today and they said right away that he needs a stent, his flow is very poor and the prostate is clearly blocking the ureter. We aren't sure when that will happen. But it can't come soon enough. We've always thought the left side pain was his kidney and feel relieved that the stent will relieve some of the worst and most annoying symptoms (at least I hope it will, I've no experience of this). I must admit the horrible period before an oncology appointment has been getting me wound up recently, and now I'm not looking over my shoulder at work tasks, I feel I may be able to cope better, who knows though!
The Dexa scan he had a few weeks ago has revealed some significant osteoporosis, especially in the legs and hips, and they are working out how to deal with it, possible a weekly biphosphonate, calcium and Vit D supplements we think.
So all in all a good report, much better than we thought, though the doctor did say the March RT is probably still doing its job. I do believe I married a walking miracle.
Having said all that I did read in Keith Cass's link to a new Site for advanced PCA sufferers that some G10s do live for 10 years or more and there were some things in the report that were consistent with John's diagnosis. Low PSA on diagnosis (25), few mets (5 or 6), little pain (this has generally applied to John). So he's now been given a challenge by me, he's done well for 5 years, here's to the next 5.
Love to you all, I can't tell you how much your support means to me,
Allison
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Great news and still on the same regime, exactly what the doctor ordered (and hope they do the same for me in two weeks time) John,s review gives so much hope to people like me with such a similar prognosis. Let,s hope the pain can be eased and you can enjoy a wonderfully relaxing Christmas together.
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Oh Allison, I can't tell you how relieved I am for you both. Here's to the next 5 years, indeed xxxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Allison,
Neil had to have stents for each kidney due to the disease affecting the ureters. The main reason for this was, in his case, to prevent kidney failiure. At one of the meetings I had with hospital managers, one of the urologists said they had recently evaluated some research in the South west which concluded that if stents were needed, having one inserted was as effective as two, and saved the trauma of both ureters being fitted with the stents. It is usually a fairly minor procedure, but they do need to be fitted properly and checked as they can come out through the penis as happened to Neil. Also, depending on what type of stent, some are only temporary, I think up to six months before they need replacing so the situation needs monitoring and a plan for the longer term discussed. I think there are also permanent stents which can stay in indefinately, so all considerations to find out from your urologist. Hopefully they will do the procedure sooner rather than later for John,
Best wishes, Fiona x
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Hi Allison,
So happy to read your positive post. Relieved to see that you can continue stilbestrol and only a minor operation of having a sent fitted can help alleviate some of jons pains- hope you haven't got to wait too long for that to happen.
Have a wonderful xmas with your trully beloved walking miracle.
We've just had next lot of scans today, to be reviewed beginning of Jan. Fingers crossed I'm married to a walking miracle also!
Love Lesley xx
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Hi Devonmaid,
I see from FB that there is a problem and J is in hospital - I just wanted to let you know I am thinking of you and all the family xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Allison
you are perfectly entitled to let off steam here, I know how worried you were when we met last week. I just wish I had realsied how bad things were, I would have stayed to give you some moral support.
To make John wait for such a long time when there was a known retention problem, moreover one that was worseining and causing so many unacceptbale issues. The discomfort, pain, sleepless nights for John and the worry and anxiety for you is just terrible.
What followed is simply not acceptable, I know you will take this forward but there is no rush, it can wait while you gather your thoughts together and whilst you get John more settled and stable. That has to be the first priority. In the quieter moments, jot down all the things that happened and what was said and done by whom. If you can recall names include them in your jottings. Try and create a timeline but Don't worry if it is all out of order, just commit it to paper whilst you can. If John is up to it ask for his input too.
If you want to pursue a complaint then write a short note to PALS to tell them you will be lodging an official complaint in the coming weeks.
Once you feel able to, then you can put a formal complaint together. Is there anyone in your medical team that can help you and provide you with some support in doing this?
I know you are probably in an emotional turmoil, fear, anxiety, anger and to some extent a feeling of being helpless. However you are one amazingly capable and resilient Lady. You have had so many things to deal with, including your situation with work, it is hardly surprising you need to get some of it off your chest.
So in the coming days, try and get John as comfortable as you can, if anything looks to be going wrong then call the specialist team, if they do not respond quickly call your Consultant. Your company have indicated that John should be covered on your private medical cover, so if necessary use that to speed reactions up.
I really feel for you Allison, seeing your Man so unwell and getting so little help is unbearable. If there is anything at all I can do to help please message me.
You are very much in my thoughts. Jackie has been asking after you every day and sends her and Alan's best wishes as well
xxxxx
Mo
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I'm so sorry that you've had to go all through this Allison.
I hope your John can get a bit more comfortable and get some rest. You too.
What a joke the NHS in all this, and not a funny one at that.
Best wishes
Sandra
We can't control the winds - but we can adjust our sails |
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Devonmaid
That is quite a horror story and of course totally unacceptable on the part of the NHS.
I had a SPC fitted within minutes of going into retention during an operation. The medical staff were in what I would describe as a controlled panic.
Bit confused about the folded bag. I had a normal leg bag and at night attached a night bag to the leg bag. I then attached the night bag pipe to a catheter strap around my ankle to save anything getting pulled. I also wore pyjama bottoms to keep it all in place.
Hope things start to improve soon.
Thanks Chris
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I'm so sorry you have both been through all this over christmas. Chris's story ( above ) made me wince , but this takes the biscuit. Your man is made of steel and he couldn't hope for better than you by his side. I so hope things improve quickly.
Chris
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Allison,
I am so angry to read this. Neil and I went through numerous similar scenarios with our local urology service, I had absolutely no trust in them at all, you get to dread the prospect of a loved one needing admission, it simply shouldnt be like that. Do message me if there is anything at all I can do but in the meantime, as ever, I send my love,
Fiona. xx
User
Dear Alison and John,
My heart goes out to you both Mo has given some brilliant advice but it should not happen in this day and and age but we hear it so often when the system fails and patients are treated so badly. I have witnessed it my self on many occasions.
I hope that John is more comfortable and you can rest . Do what you need to do but get your strength back first.
Lots of love
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Dear God! All that and they didn't even give you a night stand!!!!
I was so angry for you this evening, I emailed David Cameron to express my disgust - didn't actually name you, obviously :-0
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Allison what a terrible time you and John have had. I do hope he is now, belatedly, getting some relief. One query I wondered whether they suggested self catherisation at all which would have helped to relieve the pressure. Thinking of you both!
User
If he has a supra pubic catheter and the bladder, ureters, urethra, etc., have been traumatised by procedures, various degrees of bleeding can be ongoing. Neil's urine was always dark, it just became the norm. He coped well with managing the leg bags and the night bag which rested in a bucket at the side of the bed so any leakage would be contained. Found this much better than a night stand which we eventually got. I used to empty the bags into a urine bottle then into the toilet then disinfect the whole lot with wipes. The other thing was hygiene round the wound, keeping it clean and preventing infection. Definately get the district nurse involved, ours were very good and we needed to be on their radar in case of emergencies. They and the GP were best for getting catheter supplies except the hospital sent a huge parcel of supplies, most totally useless, what a waste of NHS money. The other thing is to watch the whole thing doesnt block and retain urine which can happen. Most definately needs time to settle down, moving around can also cause bleeding at this stage. You are right, no one tells you anything. Hope you both get some well needed rest right now,
Fiona. xx
User
Hi Alison
It's so disheartening to read that this is still happening in this day and age. John should not have had to suffer like that. I think a complaint does need to be made in good time so systems/procedures can be changed.
I have a bladder neck stenosis (restricted opening) that they could not get the camera through so unlikely they will get a catheter in. The consultant I saw said to me if I were to go into.retention I wasn't to let any tom, dick or Harry near me with a cathetar (not sure tom, dick or Harry would listen to me like)...He said that a urologist would be able to draw the urine off with a syringe until.appropriate intervention could take place. I'm obviously hoping none of this has to take place. My point being why oh why could they not do this for John....
Actually that reminds me the consultant was supposed to send a follow up.appointment about a year ago....its bloody maddening isn't it
Take care and really hope John gets this all sorted ASAP
Bri x
User
Hi Allison,
I can believe what you John has gone through with poor attempts by nurses/doctors at trying to push a catheter up a mans penis when he was in retention, they need to have a size 16 french shoved up their uretha they would soon be asking for some sort of painkillers
A chap called David [flyboy] who has not posted for a while has got a superpubic catheter fitted he might be on to ask advice from, I know he has had some bloody affairs with his,
Best wishs to you and John
Regards Barry
Edited by member 02 Jan 2016 at 10:06
| Reason: Not specified
User
After all the disappointment of not getting VR, it seems there was a greater force at play - someone somewhere knew you would need that private health cover :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Never thought we would say that, eh??? Stay strong lovely xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Alison,
My Ex hubby was Ex military so I so understand where you are coming from re the stoical comment . So glad that John is feeling more comfortable . Keep your chin up .
Lots of love as always.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Good evening my friends
Just an update, we saw the consultant this evening (private of course). John is booked in for a TURP on 2nd Feb. The consultant feels he has three problems, the prostate enlargement due to the cancer (hence the TURP), a damage kidney (possibly needing removal or a stent if still working to some extent, but that would be for a later date) and a need for a circumcision (possibly something to do with repeated, untreated infections. Anyway, the hope is that the TURP and circumcision will allow normal emptying and the supra pubic catheter may be removed. Obviously subject to success in the op but he feels that worth doing for the potential benefits. John is still very weak, though recovering well and not so yellow now the build up of toxins re being excreted. He is a tad concerned but whilst the supra Pubic is great (after what he's been through), we can't deny that it has many drawbacks, not least catching the damn thing in your clothes.
So, hopefully this operation will ultimately see John back to reasonable health. If that does work out this way then I'm going to see if I can manage to go back to work, albeit at a reduced workload. As wonderful as it is to be free of work stress, I would rather leave the consequences of long term sick leave until I really need it.
So oncology on Feb 8th, results of the latest scans and the possibility of a better year ahead. Phew,
Love to everyone
Allison xxx
User
I don't know whether to be happy or worried for you and I guess I am just picking up your mixed feelings. Will the circumcision be done at the same time as the TURP to avoid two lots of GA? The TURP will hopefully bring some immediate relief and eventually some normality back.
Returning to work is why I worry for you - but with reduced hours or flexible working it might be really good for you to maintain some outside activity .... and to keep the private health cover ticking along. But oh, to be at work and missing time with baby D - that will be tough :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Little bit like lyn I am picking up mixed vibes from you Alison. Stay at home versus back to work only you can make that call I so wish as wives iwe didn't have to face these decisions but sometimes we have to. Whatever way you go remember to make time for yourself.
Thinking of you and John as always
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Alison
Just wanted to wish you and John mine and Elaine's best wishes for what's ahead. We both kind of believe in fate too -- everything has a habit of sorting itself out !! Thinking of you
Chris
User
Hope John recovers well and that it all goes according to plan. Take care of yourself too.
We can't control the winds - but we can adjust our sails |
User
Hi Allison,
Hope they get John home soon and things improve quickly, sending you all our best wishes
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Allison
being home in his own bed with you there will help him so much.
Biggest hugs and best wishes for the TWOC in about 2 weeks time. I will be down your way in March so will make sure we get together.
xxx
Mo
User
Wishing him a speedy relief Alison.
As far as jobs to do are concerned, well they'll still be there for another day. Just do the bits you can see and that will fret you and leave what you can.
Plenty of vitamin C for you perhaps?
We can't control the winds - but we can adjust our sails |
User
I am so sorry - this has been a trying few months for you both. And even time with D will not be much comfort in these next fews days as John will be frightened of cuddles pulling on his catheter. I hope everything settles down soon my friend xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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D
I know we all different and cope with things in our own way. Has he got his leg / thigh straps on correctly ? just moving about did not pull on my catheter. I found the urethral catheter irritating and slight uncomfortable but not painful,same with the SPC, yes if you pull on it at the entry point it does hurt for a short time. On one occasion one of my ward nurses fitted my straps and did not have a clue, fortunately I knew how they should have been fitted. I wore elasticated short type underpants tight enough to keep it all in place but not to tight to cause discomfort. I imagine the trauma in his urethra was worse than mine was, I did pass some clots between the urethra and the catheter that wad painful made worse by a doctor pulling the clot out. I also had urine leaking into the soft tissue of the penis that was painful and made the penis swell.Is he draining from both catheters ? I have never had much trouble with the twoc and I have done five so far, just need to relax and not get anxious. Drink the water the way you are told by the staff. The first urine did sting a little but it soon passed.
Hope it all starts to improve soon.
Thanks Chris
User
All the best and good luck to him on the 17th.
User
Chris and Lesley
Thanks so much for your advice. We have an oncology appointment today so will discuss with the consultant. I'm not able to go with hubby today as I've got a dreadful cold and cough and can't justify taking germs into a place where immune compromised people are, so will send himself in with a list of questions. Lots of pain today. I feel a bit concerned that no one is looking at it until the 17th to be honest. I'll probably call our nurse and ask for someone to review the wound, if they don't look at it today at oncology.
Thank goodness for this forum and the generous members.
Lots of love
Allison
User
Well oncology was good, all remains under control and no change of treatment needed, which is fantastic news, especially after them telling us that the cancer had spread to the kidney and then fifteen minutes later told us, oh nothing to worry about, it's nephohydrosis!
Both catheters blocked yesterday and guess what? Yep, same again today, we are currently waiting for the night shift district nurse service to come out. I must admit the SPC wasn't any trouble compared to this.
Allison
User
Thanks for the offer of a cuddly blanket, tea and Valium, I'll happily take all three! We are staying in bed today, I'm still feeling rough with this nasty bug so it's stuff the housework and recuperate day.
Chris, we managed to get some flow by dislodging a blood clot and the district nurse turned up at halfpast midnight to flush the bladder out, which was painless and worked well. The consultant rang this morning and advised not to use the valves anymore because it's using them that causes the spasm that stops the flow and gradually causes a blockage. Thank you for asking.
Apparently there are only Westerns on the telly today, so I'm having an enforced bout of cowboy movies, which is great for dozing off to.
Lots of love
Allison xx
User
Oh Alison,
Sorry I can't offer advice on twearks , tweets or twocks but what I can say is that my heart is with you in volumes.
Stay under the duvet X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Alison,
Really sorry to hear things are difficult for you both. Just wanted to say you are in my thoughts. I hope everything improves so that you can enjoy those few days away.
Steve x
User
So disappointing for you but I know you will pick yourselves up and carry on because according to FB you are a woman of courage x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Sorry to hear things haven't gone as hoped but I'm glad you are able to plan a few days away so you can 'regroup'. I can empathise with the different episodes - sometimes things change and you then just get used to a different sort of 'normal'. It intrigues me how we are able to normalise the difficult situations many of us are going through. If anyone told us ahead what we would be dealing with I'm sure we wouldn't think we could cope - but we do because we have to.
Enjoy your break - I can't think of anything better than watching the sea with a drink in hand.
Rosy
User
D
Sorry to hear his and your problems continue,as regards the bladder working again, it is now just over three months since all my catheters were removed following 90 days of catheterisation, yesterday I leaked three ml.Frequency and flow are a bit iffy at times.Sometimes I go right through the night without getting up last night it was three times but only leaked one ml. So stay postive and hopefully things will improve.
Take care and enjoy your break.
Thanks Chris
User
Hi Allison
Sorry to hear that things haven't been as successful as you had hoped.
On the positive side I'm glad t see SPC is still draining and you can get out and about. Hope you have a lovely few days by the sea. This in itself has got to be good therapy for you both.
Lesley xx
User
Hi Allison,
Hopefully the pain will ease as the days pass,
sometimes life seems to be a struggle but you know we are all with you and John
Barry
User
Poor you - I hope he responds to the antibiotics soon. As an NHS employee I have to agree with you about there being no sense to some of the systems. Good old fashioned common sense doesn't fit in with the business model. It's worth complaining as 'customer satisfaction' is a major target. I know the Trust I work for does respond well to complaints and reviews the systems in place.
All the best
Rosy
User
D
Not good news, you have been having a rough time. I remember that pungent smell you speak of, so does my GP she took the top off the sample bottle and it nearly blew her head off. I had a recurring UTI post RP so when I rang the GP would tell them there was also a yellow discharge, which there frequently was, this always seemed to get the urine dipped and sent off to the lab to be cultivated of whatever the correct terminology is.
I know we have this postcode lottery of care but our hospital is very good we now have a single point of contact at Urology who you can phone for help, not sure if your Urology department is the same. My consultant/surgeon also arranged for me to have open access back onto the ward if I was has having problems following my subsequent ops and fitting of the Super pubic.
Take care of yourselves.
Thanks Chris
User
Allison,
I really feel for you and John. When Neil had a SPC fitted no one seemed to take any responsibility for it afterwards and we, too were shunted from District nurse, etc and twice Neil had to be admitted to a urology ward with all the stress of going via A and E as they were the only ones who would sort the blockage. There really should be much better after care and systems of getting help, as you say, I cant imagine what it's like if someone is their own. Amazed they were so dismissive about the prospect of an infection, with all that meddling to the bladder and associated areas, the risk of infection is inevitably higher. Next time we have a urology representative at next PCa Support Group I must remember to ask about all this !
Fiona. x
User
Hi Allison what a terrible run around. I can tell you too what it is like as someone on my own to have constant UTIs. I was very ill four years ago with a constant UTI which was never adequately dealt with until I was hospitalised. What I learnt was the importance of tackling it early. I did three things.
So I purchased (off amazon if I remember correctly) the dip sticks used at the GPs. Whenever I suspect a UTI and I now have a good appreciation from colour changes, to cloudiness in the pee to the pain in the penis, it varies, I immediately test. If there are nitrates present I know I have a UTI.
Secondly I start taking the anti biotics immediately. I always have at least two courses of the anti biotic which it was determined four years ago deals with my type of UTI. It then takes about seven or eight days to clear.
Thirdly because I was still getting them frequently (a problem from self catherisation makes it more prevalent) I now take a prophylactic dose every day of the anti biotic. There are differences of view about this amongst the medics but it has worked well for me and lengthened the time between attacks,
I suppose a fourth stage is I contact either urology or my GP to confirm what I have had and if I remember to take some urine in a bottle before I start the anti biotics they can then test it to confirm.
Over time the medics have trusted my judgment on this and though I have not eliminated UTIs I get at them very quickly before they get hold and thus minimise the impact.
I have to take control as I am on my own and cannot risk becoming too ill before action can be taken.
I cannot speak for John but I now kinda know when a UTI is starting. I always carry around the dip sticks and the course of treatment if I am away so treatment starts instantly.
Hope that helps and hope the anti biotic deals with it and John gets relief.
User
Poor old NHS, born the same year as me and also feeling the years. What a run around you've been given
Sometimes Allison, we have to take charge of our other halves, especially in your case with a husband on the Stoic side.
I think Paul's way of keeping up with it (ie the dip sticks) is very good.
My poor sister had all of this with her husband. Nobody was interested, there was no cohesive care.
The district nurse doubled as the Macmillan but was most inefficient. When she finally called in, after frantic, then angry calls from my sister, they would find that she either hadn't brought the right bits of they were the wrong size.
Because my sister then became (rightly) a little stroppy at the lack of care and foresight, they became even more unhelpful.
I hope you can get something sorted
We can't control the winds - but we can adjust our sails |
User
Hi Allison,
What a terrible situation for you and John.
UTIs can be painful, very dangerous, long lasting, and finding the right antibiotics which will actually work is so difficult.
Generally, it's only by trial and error that you find the right combination.
For instance, the likes of Amoxycillin are of no use at all.
I have to say, Paul's posting was spot on. Self testing is the answer, along with finding the antibiotics which will help John's particular type of UTI.
You just can't beat being pro-active at all times.
I do hope that you can now get on top of this and prevent such unnecessary suffering in the future,
Warmest wishes,
George
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User
Hi Alison,
So glad to hear that John is improving, I totally emphasise with what it is like battling the powers that be to get things sorted, or maybe that should be the powers that don't. It just makes life so much harder (especially when it is hard enough already).
Moaning certainly not my friend.
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON |
User
DM
Thanks for the reply, I was wondering if he had an allergic reaction to the leg bag straps or even the SPC.
Having even a small pee is at least a step in the right direction.
Hope things start to improve soon.
Take care of yourselves.
Thanks Chris
User
It might not be the anti-depressants love - just your head protecting your heart. Next week seems like forever but will arrive regardless - let us know.
Good news about J though x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Devonmaid
I am sending you the comfort blanket as it sounds like you need it.
Of course you are not heartless - as Lyn says you can only deal with so much at one time. Throughout David's illness we have had another serious issue (not illness) to deal with, and I have been very aware of the separate boxes in my head which I have only been able to open one at a time. I have felt that I must look as though I'm being very hard at times but it was the only way I could cope.
I am here in the middle of the night because I am now having to open 2 boxes at once and woke up with these thoughts banging around in my head. So my advice is compartmentalising the issues as you are, for as long as you can.
Lots of love
Rosy
Edited by member 27 Mar 2016 at 03:12
| Reason: Not specified
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DM
what a beautiful post from Rosy with great advice too.
You are not heartless at all, nothing could be further from the truth. You have been through so much more than many people know.
I am thinking of you
xx
Mo
User
That comfort blanket has been on some journeys, its been here twice and its such a comfort.
I hope the news on your brother is the best it could possibly be.
Love to you both
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Difficult times but if anyone can cope it is you A. Let's hope the news you get is better than you are thinking but whatever happens you will continue to give the support you have done for John. Thinking of you all!
User
Hi devonmaid
You deserve kind words. You are doing a wonderful job looking after your husband, glad to hear he is recovering from his uti.
Sorry to hear you have more worries with concerns for your brother. I too dont believe you are heartless, far from it!! Whatever way you deal with what life throws at you is right for you at that particular moment in time. I wouldn't be concerned about not shedding tears. And if anti depressants are helping you, keep taking them.
Take care.
Lesley xx
User
DM
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.
xx
Mo
PS I see Lyn has taken to page bumping too that page not found message is relly annoying.
User
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
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
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
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
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
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User
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
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
Allison,
not much I can say other than I think of you both ever day, what a bloody rollercoaster.
xxx
Mo
User
Thinking of you too Allison. X
We can't control the winds - but we can adjust our sails |
User
D
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
Not a lot I can say either other than I'm also thinking of you both.
Paul
User
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
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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
Hoping you can keep strong for each other. You've been through so much
User
Hi Allison,
Thanks for the update,
Always thinking of you and hubby, lots of ups and downs hope the
infections go away
Barry
User
Hope everything goes well for for you both with the next stage for treatment.
Thinking of you ,
John
User
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
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
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
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
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
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
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
Hi Allison,
Thinking of you both. Hope the RT works it's magic.
Take care.
Steve x
User
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
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
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User
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
Very glad to hear the good news! Long may it last.
Best wishes
Rosy
User
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
Glad to hear the good news Allison
Barry
User
DM
Pleased to hear things are progressing well and I am sure the news about your brother was a relief.
Thanks Chris
User
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
Hi,
Wonderful news, hope things continue to go well.
Steve x
User
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
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
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
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
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
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
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
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
D
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
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
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
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
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
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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
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
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
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
User
DM what a ride this roller coaster is sending you on I am glad that J is in hospital and fingers toes and everything crossed that the infection can be brought under contro soon. . Sometimes it seems that our lives give us more than we can cope with, but Famous for my Buts we somehow do cope because we don't have a choice we just have to do the best with what life has dealt us. Cuddle little D and draw strength from her .
Thinking of you
Lots of love and a huge comfort blanket cuddle.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi,
I hope this helps to improve things for him.
Take care of yourself too. It doesn't matter if certain jobs get left for another day. Use your time for what really matters.
Steve x
User
Shocking - I am thinking about you both xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Our poor NHS, our poor patients.
When you complain about the poor dementia patients on the same ward the staff will point out that there isn't anywhere else for them.
Been there twice.
One poor old lady was fed chocolates all afternoon to bribe her to be quiet. Come the evening/night she couldn't understand why she couldn't still have her choccies and cried and screamed all night for them. Horrible for everyone.
Your husband may feel more contented at home now he has some relief, although I know that it puts extra strain on you.
Thinking of you
Edited by member 22 Jun 2016 at 13:25
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi all
The latest situation is that I emailed the consultant again yesterday and he phoned John and did ask him if he wanted to go back into hospital, which he refused. So the plan is to see him on Tuesday at the hospital and possibly admit him then (gives me time to arrange it through BUPA if necessary as I'm still a member through work). He did say he had discussed John's case with colleagues and has some ideas he'd speak with us about on Tuesday. We are scheduled to see the oncologist ion Monday, it's been put back twice already as John hasn't been well enough so we will try to go.
He's still the same, can't stay up long, feet and legs filling up with water, bags getting blocked occasionally and bladder spasms. I've bought him a few nightshirts so that he can be decent, he's asking for a nightcap and candle, cheeky beggar.
The infection has been identified at the GP but I don't know if the hospital are aware, I'll check on Monday. The gunk hasn't been swabbed, probably that is needed.
Lyn, I asked if I could ring the hospice nurse and was told yes then no (by John) As we are seeing doctors next week I'm prepared to leave it for now, but I think we do need some support.
Our visitors are here and at least they made him smile. Lucky me, I live close to an M&S so we will be living in prepared food and takeaways as I have no interest at all in cooking at the moment. They have helped to tidy the kitchen and that's the main thing I worry about. I'm sure they'd run the Hoover round if I asked but they are popping to Bristol for the weekend so we have a couple of days of rest.
Thanks for the kind words everyone, it really helps.
Love Devonmaid xxxx
Edited to clarify who said no to the hospice nurse
Edited by member 01 Jul 2016 at 22:21
| Reason: Not specified
User
Well it's good to hear John's still got a sense of humour despite everything. I couldn't help laughing at the thought of him in his nightgown, cap and carrying a candle!
I do hope the BUPA option works out. At least then he could be admitted and be properly sorted out without the trauma of disturbances from other patients.
Have they come up with any drugs to relieve the bladder spasms? I used to work with children who were bedwetters and they sometimes used drugs such as oxybutanin for 'sensitive' bladders. I don't know if it would be appropriate for John. I'm surprised they haven't done a swab - this has been going on for ages - surely that's just common sense? I'm also curious (nosy) to know who said you can't phone the hospice nurse. I asked our GP to refer us long before the hospital ever mentioned it and I used them as a sounding board. I know they communicated with the hospital once they were involved, but in my mind it was an independent service and we used it as such.
It's good to know the visitors are proving useful. Use them as much as you can - they can go to M&S and get the food while you put your feet up. Or you can go and then sit in the coffee shop while they sit with John. Do take care of yourself though. You'll be no good to John if your exhausted.
Thinking of you
Rosy x
User
Hi Allison
Sorry to hear what you and John are going through, I hope things improve next week
Barry
User
hi DM
the nightcap and candle made me laugh and think of Scrooge, good you had a couple of visitors and Tuesday we hope will bring some fresh treatment
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Hi Alison
Sorry to hear that things are not improving, sometimes this bloody disease does my head in, there is no rhyme or reason, all the people on here that have had mets and not two have responded the same.
I hope the visitors get stuck in to take some of the pressure of you.
We all send our love to you and John.
Si & the gang xx
Don't deny the diagnosis; try to defy the verdict |
User
Hi DM
Hang on in there DM. I admire all you are doing for jon. Gp should be able to change antibiotics if necessary on Monday. Good to see your visitors made Jon smile and they do sound pleasingly quite practical.
Hoping Jon will be feeling better soon.
Take care
Lesley xx
User
Hi DM
Wishing you and your husband all the best for his upcoming appointments. I hope he finally gets some answers as to what this awful infection is and get on the right treatment.
Sending love and positive vibes to you xx
User
Nothing much happened today Lyn, it didn't surprise me as really we need the urology people to share their plan with us and that's tomorrow. Onco said he thought that the RT could be causing some symptoms for up to six weeks, so John felt a little better at that. We have to go back in 5 weeks by which time it should be clearer whether the RT has worked. It was a struggle to get John there today but he seems cheerier tonight, so that's a good thing. Will update after our evening appointment tomorrow. If he does get admitted I've cleared it with Bupa that it will be in the private wing. I might as well use my company's private health care while I've got the option.
Love
DM xxx
User
Many congratulations, and many more to come
Best wishes,
Arthur
User
Congratulations to both of you for yesterday. 40 Years is a great achievement. The time just goes so fast doesn't it. We got married in 1969 so a bit ahead of you.
I do remember the heat of '76 though. We must have been one of the few families that raging hot summer that got washed out when camping. So wet, inside and out of the tent, that we had to go home very early !!
Story of our lives that is.
Again, congratulations and hopefully many more to come ( whisper - I think another 40 is a little optimistic given our ages - but we can hope eh!!)
*********
Edited by member 18 Jul 2016 at 06:26
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Many congratulations to you both.
I remember that summer - it was when David and I met. I was also working on a burns ward wearing a gown and mask on top of an old style nurse's uniform, starched collar and apron etc! The sister allowed us a single glass of squash during our shift as it was so hot. So the NHS has moved on!
As you say 40 years is a major achievement and I wish you much more happiness to come (but as Sandra says maybe another 40 is pushing it)
Much love xxx
User
Hi DM
Wow! 40yrs married, that is a great acievement in this day and age. Congratulations to you both.
If i'd have realised you were drinking on line last night I could of had an excuse to join you, then you would not of been drinking alone! Hope you haven't had too much of a hang over this morning
Lesley xx
User
Ah! Doctor's surgeries and their appointments eh. At my daughter's surgery, you are not allowed to make appointments in advance, you have to ring on the day and if they've run out then you have to ring next day!
As for special birthdays and celebrations, well what about celebrating it a bit earlier if your other half is up to it.
Let's face it though. It's just another year isn't it. Every day is a celebration
*******
We can't control the winds - but we can adjust our sails |
User
How about having a treat a day throughout September? I'm sure everyone here agrees you deserve a bit of pampering!
Re the blood results surely the doctor will be contacting you once they come in (unless of course they are perfectly normal)
User
Any news on the latest deliveries Julie? Thanks for the flip, don't know why it takes so much effort! Xxxxx
User
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
User
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
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DM
Thanks for the reply I hope all goes well, you certainly deserve a good outcome.
Thanks Chris
User
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
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I still love jumping waves!
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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
User
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 |
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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
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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
User
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
User
Chuffed for you both. Hope recovery is rapid. Best wishes
User
Good news at last. Hope John makes a speedy recovery
Bri x
User
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.
User
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
User
Ooooh, a notable birthday?????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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DM
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
Mo
User
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
DM
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
Originally Posted by: Online Community MemberWell 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
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
Mo
User
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
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
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 |
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Allison,
That's fantastic news!
Really pleased for you both.
Mondays will become your favourite day of the week.
Don't forget me if you win that lottery, you're on a roll.
Steve x
User
What wonderful news for you both, long may it continue
Arthur
User
My Goodness, well I'll go the foot of our stairs or what was that about the front gate, WHAT !!!!! I had to read this twice Alison and John SOOOOOOOOOOOOOOOOOOOOOOO Happy for you Guys. What ever is working stick with it . Maybe it's Granparentism wonderful news. I have to say it again.
WAY TO GO X
What a start to the week.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Allison
I am so very happy for you and John, whatever it is doing the trick meds, being a grand daddy or just a minor miracle enjoy the heck out of it.
xxx
Mo
User
Lovely news my friend; although you know that I get nervous around miraculous drops, you are so well-tuned into J that you will spot any problems quickly I think
Enjoy your beautiful family during the gorgeous weather that we are supposed to be getting :-) xxxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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After reading my messages following my appointment and feeling a bit down I got such a great lift from your news. John's news often seems to parallel mine so it was such wonderful news to hear your progress. Maybe I should stop casodex for sillesbril? So pleased for you both, long may the resistance continue. I feel better already!
User
thats really good news on my first post read of the day
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Brill news for you both. Keep kicking it's butt
Bri
User
What a lovely start to a new month, excellent news.
Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
User
Brilliant news for you, so very glad, long may it continue !
Fiona x
User
So so pleased for you both Devonmaid.
The sort of news that's boosts ones belief that there is some light at the end of the tunnel. Long may it continue to work for you.
We can't control the winds - but we can adjust our sails |
User
Hi Allison,
What great news, i remember you mentioning that Chemo was on the cards soon, it seems like a lifetime ago.
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
Hello Allison
what lovely news you have and long may it continue.
Your news also gives me so much more belief as I start a similar journey.
Paul
User
Hi Alison
This is fantastic news, was lovely to read your post. Hope Jon is feeling well in himself. Bob is still responding well to stilbestrol also despite a few other minor problems(must update my own thread soon).
Hope you have some nice summer holiday plans to enjoy.
Lesley xx
User
Lovely news, Alison, so pleased to hear, love Janet, x
User
Good news for a change Allison, keep it up!
Chris
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Always great to hear good news. Hope you enjoy your summertime weather. Cheers Georgina
User
I was thinking today I wonder why Stillbestrill isn't used more often. It's been very effective in John's case and has kept the tool kit full of options. May be it isn't a very sexy drug, what with all the new ones coming on.
I must admit we are starting to wonder if the PSA result was accurate and not an error. Just to be sure we will take a further test in a month or so. If he hadn't had recent RT I would be concerned about the drop (as Lyn gently pointed out it doesn't always auger well) but we really need to be sure it was 2.8 and not 12.8.
One thing we didn't get cleared up was a nasty pain in the side that is getting more insistent. No one has taken it seriously and although it doesn't bother John all the time, it can be severe. Urological symptoms are starting to appear too, but we've been so lucky to have avoided them for so long, the specialist nurse said a rebore might be needed. Sounds unpleasant to say the least but we'll hold off on that until it's necessary.
Cheers all
Devonmaid xx
User
I did ask about stillbestrill when I had my meeting with T, and she said simply they did not use it any more. She recalled it was used early in her career but had been superseded! Interesting!
The pains are worrying and partly because what causes them is so unclear. I think that is why I have been concerned about my leg pain, I just want to be sure what the cause is. But sometimes they simply don't seem to know and it becomes hard to push for answers. Hopefully John will get some and hope the PSA was not a rogue one!
User
Allison, John,
Fabulous news! Out of the blue! Wonderful. So pleased for you both. I am lost for words.... when Di told me, i thought the PSA had gone down by 2.8, not down to 2.8!
Fingers crossed for the next test, and look forward to seeing you both soon!
Love to you both,
Peter
User
Dear Allison and John,
What incredible news! The best I've seen on here in a while.
In fact, 'incredible' is an understatement.
Lynn and I are delighted for you both. So sorry you can't celebrate with us all on 20th June, but please enjoy the family wedding and we'll see you at The Mill next year without a doubt!
Now who will read Chris Boothby's naught verses THIS YEAR?
Your reading of it last time round was unforgettable!
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I'll read them as long as he doesn't say anything cruel about me!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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You think he would dare???!!!
User
Would Chris write anything cruel about you, Lyn?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
Nah, but he would definitely try to embarrass you, and we all know that's impossible.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
Lord knows what ditties he has in store about us all.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
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Chris is irreverent and fearless - he will take anybody on, I think
Still happy to read though George - and I have tasked Steve with taking some action photos of me for my website so this will kill two birds with one stone :-0
Edited by member 10 Jun 2015 at 21:53
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Now Lyn
If you do it don't forget to pause at just the right moment and look slightly coy from time to time! You know you can xxxx
User
YES!!
You'll be perfect Lyn.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
A 'master class' from Allison.
Who can forget those coy looks as she read out such verses as 'George and his Virgin troubles' and worse.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
Mind you, I could swear she blushed from time to time!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
We're all looking forward to this!
See you soon,
George
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Do I have to do it naked like Alison did - or can I wear some clothes? The weather forecast isn't great :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Lyn this naked thing is becoming of interest, I know I suggested you go to Whitehall naked to get the attention of government officials who could sleep through Natalie Portman pole dancing, but at the B2PCa gig Mmmmmm
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Gosh - when did Natalie Portman pole dance for MPs?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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(guys, THIS is how those rumours in the media begin ..... )
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Argh!
How drunk was I? I didn't even know I was as naked as a jay bird doing my reading. That'll teach me to drink with the once legendary Pierre le Broque. No wonder I was blushing George, I had nowhere to hide the script!
Enjoy the weekend at MOS, I'm so sorry that I have to attend this family wedding and cannot be with you, I'll sorely miss you all. mind you my liver might just be glad (the wedding will be genteel and I shall be on my best behaviour, well,I'll try anyway.
Lots of love
Allison xxxx
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Going to miss you Allison but should get to see you soon when I am in Swindon xxx
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It's been a while since I updated our journey, it's been a tale of two halves really, first part of the year was pretty awful pain wise then RT and pain all gone and PSA dropped like a stone, but of course these things don't last in our situation and it has been steadily rising (not big numbers yet but concerning all the same). Well we'll find out on Monday at the oncology appointment exactly what's happening on that front. We do believe that it will have continued to rise as the symptoms of pain have been coming back. Anyway we don't know yet so no point in worrying about it.
Urology problems have been the main issue to deal with and we are back under the urologist for that. The usual stuff really, severe urgency with accidents, pain, bladder not emptying etc. We saw the urologist this morning and another bladder scan has been ordered urgently (that means 10th Dec of course). This is causing issues with being able to go out, which is a bit demoralising.
Second order (I suppose) is the cancer, constant pain is being felt in the side and back ribs and spine, who knows what's causing it but I guess the PSA rise will give the Onco and us, some clues. The most difficult thing is severe breathlessness, probably caused by anaemia, blood count is 10.8" not too serious but it's dropping and that's a concern.
So generally, we are a bit worried but presumably Momday will reveal more.
Best wishes
Devonmaid
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Would like to wish you good luck for Monday.Hope this is just a blip on this long road
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Even though I have just done my daft and silly post ( I hope it has made you smile) life with our men at the sharp end is pretty tough. Not for the same reasons but we spent so many months with T having breathing problems and I totally understand how that impacts on everyday life. We so often talk about Q.O.L on here and being breathless is awful, I am sending so much love to you and John .
Thinking of you both .
BFN
Julie x
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Hi Allison
its tough to watch our loved ones with the breathing problems.
Just wanted to send you both my best wishes for Monday.
Carol x
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Allison
I will be thinking of you as always, this has been a long and winding road for you ,John and your family.
Many dark days but thank God some truly amazing days as well.
I will be down around 22nd through to 28 or 29th. So will call you before then so we can get together for a catch up and big hugs.
All my best wishes for the Onco review
Xxxx
Mo
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Thinking of you both Allison and sending as many positive thoughts as I can for the Monday appointment.
My very best wishes to both of you
Sandra
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Also sending much love to you and John. It's easy to forget that even if there isnt a regular update, the symptoms and side effects of PCa make life hard going at times. Thinking of you both,
Fiona.
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Hi Allison,
Lovely to see your update though am very saddened to see your husband is suffering. Often wonder how things are with you as you are at similar stage of journey to us.
Quite concerned that he is struggling with his breathing. Forgive me if I am stating the obvious but has gp checked his chest, maybe there is a simpler solution. I know it is very easy to consider the worst when at this stage of the journey and await oncologists plan.Am hoping gp may be able to prescibe something to alleviate symptoms.
I will be thinking of you Monday and hoping Oncologist comes up with an effective longer term plan.
Sending you a big hug.
Lesley xx
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Hi Allison,
Really sorry to hear John has had an uncomfortable time.
I hope that Monday's appointment will provide a few answers for you both.
Thinking of you.
Steve x
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Thanks for the support my friends, it really helps. Julie I laughed my head off at your last post on your thread, thank goodness for humour eh?
The breathing issue has been reviewed by the GP and it's been put down to the anaemia. I think it probably is the reason. Mind you I think we have another chest infection brewing by the sound of the coughing, sigh. He had the Zoladex jab today and it hurt like hell and had blood taken in preparation for Monday. So a typical day in the life of a long term met patient.
I must admit to feeling pretty down myself, I think the years of being on edge have taken their toll on me and although on the surface I am the same, I know I am not. I am a very lucky person, I know that, I've been married to my love for 39 years, have two wonderful daughters and now a beautiful granddaughter. And we have survived five years of metastatic disease and we didn't expect that. I'm not sure why I don't feel like jumping for joy these days but I am so weary of it all. That's the reason I don't post much anymore. There's really no alternative but to just get on with it. We do enjoy our lives so it's not all bad but I do wish this disease would do one! I have no doubt we all feel the same.
Lots of love
Allison xxx
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Hi Alison
I know how utterly washed out we both are after nearly 15 months of this , so I have nothing but utter admiration for you both getting through 5 years. We can only hope and wish the very best to you , especially over xmas
Chris and Elaine x
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Maybe it is the sense of time ticking on Allison - being blessed to have had 5 years that you maybe didn't expect to begin with does not trump the sadness of wondering when the luck will run out or the exhaustion of constantly being on your guard. You have said this to others plenty of times so I will remind you ..... sometimes the one looking after forgets to look after themselves.
Keep on being strong, my friend, although I have to be a little selfish and admit I miss your posts on here.
Love you loads xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks Lyn
That's exactly it. Well now for some better news. I saw our company doctor yesterday as I haven't been able to face work for the last month. Some of the reasons are;
A boss who has told me on several occasions not to be emotional
A senior leader who stopped me travelling to Poland for the company (I'd fixed up care for John) as he thought it was "rewarding" me
Same man who said to a colleague (who told me) this home situation has been going on too long.
As you can imagine, I was mortified to hear this stuff, particularly as I often feel as though I have to apologise for John surviving this long.
Anyway, long story short, doc said he doubted I could ever return to work as I'm suffering from severe stress so I am once again on six months sick leave paid and then will be on half pay for six months and then most probably I will fall into the company sickness insurance scheme which gives 75% pay until I'm better or retirement. I feel utterly relieved, my job is complex and tricky and I felt I couldn't go on. Now I don't have to and I feel much better as a result. I hadn't realised how much tension it was all causing me. Thank heavens for a kind doctor who saw quickly that I genuinely couldn't carry on.
Now I can concentrate on my beloved hubby.
Lots of love
Allison xxxx
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Why not
Best wishs Allison
Barry
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Allison, though you won't know me, my first thoughts on reading your latest post was...RESULT....and a real sense of karma, so go and do the things that you want to do rather than the things you have to do....
D
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To hold down a job and look after your OH in the way you'd like is an impossible task. Your doctor has done absolutely the right thing for the 2 of you. Taking better care of yourself will enable you to care for John with more energy, and most importantly proper rest.
It seems unbelievable the comments that have come from work. In this day and age, target driven management has a lot to answer for. It seems some people just don't have an understanding bone in their bodies. It was Richard Branson, I think, who said the company that best looks after its employees is the one that will achieve the best customer satisfaction. It is a maxim that needs to be followed more often.
Best wishes to you both.
Paul
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